In the Parkinson’s Garden: Ruminations on Love, Intimacy and Sex

In the Parkinson’s Garden: Ruminations on Love, Intimacy and Sex

Preface

It has been quite some time since my last post. I assure you that I have not been idle, just facing a number of challenges which have required close and careful attention. I have been relearning how to walk after losing this capacity quite suddenly over a period of 4 – 5 days in January 2016. As part of this challenge I had a total replacement of my left knee in late August. I am now a little over two months post surgery and have completed my knee rehabilitation physiotherapy program. I have some things to say about the surgery and the rehab as well as the frustration of losing all capacity to walk and not finding a suitable explanation as to why this should happen. However these are topics for future posts.

The biggest reason for the delay, or should I say hesitancy in making my thoughts public, is the sensitive and tricky nature of the subject matter. While the topic has been bouncing around in my mind for quite some time, personal thoughts about sex, love and intimacy are not something that spills onto the page without some considerable thought – especially because my wife and lover will read it with a most critical eye, and rightfully so (see Note 1.)

OK, you might well ask: “Who in their right mind wants to read a blog post on love, sex, and intimacy through the lens of a 67-year-old male Person with Parkinson’s (PwP.) Already I can hear bleats of protest, if not indignation and outrage, ranging from: “Oh God, No!” “Cover your eyes and ears,” “Spare us!” Yikes!” “Lock up your children,” ”Gross,” “You deviant,” “You pervert” and worse. If these represent the tenor of the thoughts going through your mind, then I sincerely hope that I do not live up (more precisely, down) to your expectations.

To be honest, I do have some reservations about embarking on this journey, mostly because my thoughts on intimacy, sex and love have a much greater probability of being misunderstood than my thoughts on many other topics. Still, I tell myself that I am being honest in my approach and it has never been my intention to write a “tell all story” or an exposé on the sex life of a PwP. Those of you who are expecting a titillating account of sexual encounters (creepy, romantic, or both) or have a prurient interest in the sexual appetites, activities and proclivities of those who suffer from chronic, debilitating disease and find ways to overcome obstacles to intimacy and sexual satisfaction, can look elsewhere.

When I started this post, I wanted to write about how sex, love and intimacy are just as important to Persons with Parkinson’s as they are for so-called “normal” people. More precisely, I wanted to write about a “normal guy with Parkinson’s” who

  • Has dopamine deprivation such that his physiological and the neurological systems are not playing well together;
  • Has so many motor and non-motor symptoms of Parkinson’s that his personality, his essential self, disappears into the visual busyness that is Parkinson’s;
  • Has difficulty making his views heard and understood outside of a very small circle of friends and family;
  • Desperately wants to deny that the disease is not only advancing but will eventually render him incapable of activities of daily living and totally dependent on others for care;
  • Wants to live and feel that complex of human feelings and behaviours we have come to associate with intimacy, love and sex.

Let’s be clear. I am quite sure that any talents I possess as a writer or a story teller will not be adequate to the task of explaining the permutations and combinations of love, sex and intimacy along with the almost infinite number of accompanying human emotions. Nevertheless, I shall do my best to begin this conversation in the only way I know how – using a blend of personal experience, critical self-reflection, knowledge (lived and acquired) , and informed awareness of the issues.

[Please note that I have not included any analyses of the tremendous love and support I receive from my family and friends as it is of a different order of love and intimacy.  If anything they should feel relieved by this omission rather than slighted.]

Two particular unrelated events, one hundred years apart, have been instrumental in the formation of my views on intimacy, love and sex, and on my decision to voice them in a public forum.

So, let’s get started shall we?

Eloping: Guns Blazing?

 [Love was smouldering in the gardens and orchards ….]

What better place to begin a search for true love than with a story about true love. The time is 1915; the place is Deerwood – a small Manitoba farming community on the rail line between Altamont and Miami; and the key protagonists are my paternal grandmother, the auburn-haired Maud Moorhouse, her father Henry Moorhouse, and my grandfather, Robert Egerton Marshall, neighbouring farmer and “ne’er do well.”

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Map showing the proximity of the Marshall and Moorhouse farms

I do not recall my grandparents being wildly in love but obviously there was something smouldering on November 23, 1915 when they evaded the pursuit of the bride’s father to elope and marry in Winnipeg, Manitoba. The story of the elopement has always been told in our family with a certain amount of humour – a story about how Maud (20 years old) and “Old” Bob (15 years her senior) had outfoxed Maud’s father and run off to Winnipeg together. It was pretty racy stuff for rural Manitoba in 1915.

In an undated and unpublished manuscript, Not Because of Beginnings, Dr. H. H. Marshall, the first-born child of the eloping couple outlines the facts of the matter.

“On November 23, 1915, Bob drove his horses the long roundabout way to approach the Moorhouse farm from the Deerwood side, which was mostly hidden from view from the house. A deep ravine crossed the south part of the Moorhouse farm and between the Marshall farm and Deerwood. There were no approaches for three miles to the east but the west approaches could all be seen. While her father’s attention was diverted, Maud walked down through the wooded ravine pasture to meet Bob. They then drove to the railway station at Deerwood, where he had bought tickets earlier. The train was on time and they were on it. Father [Henry Moorhouse] was furious when he learned what was happening but he had been delayed some. He took his good team of horses and a shotgun to follow the elopers but he arrived at the station after the train had left. He tried to follow but was left far behind. Bob and Maud traveled to Winnipeg to be married by Rev. Ridd, a minister who had served at Miami. Henry was forced to accept the situation, although he certainly would have fumed and stormed for some time.”

The story has been told and retold many times over the years (and will continue to be) and each telling will be as understated or as overstated as the teller wishes it to be. Undoubtedly, many of the accounts will contain embellishment in keeping with the storyteller’s character and his/her skills at weaving a good tale. The fun may have been in outsmarting father Moorhouse who would be painted as a gruff old bugger with no love for an underachieving neighbouring farmer almost as old as himself. It could be accompanied with appropriate narrative describing the farming economy of the day and Marshall’s poor prospects coinciding with his decidedly very poor agricultural land, barely suitable for pasture, as the backdrop to Marshall’s desire to spend most of his time on horticulture and fruit growing rather than traditional farming. I have heard some say that he was a “damn poor farmer.” The punch line would be that Marshall’s inclinations were correct and his observations that this land would produce excellent produce led him and Maud to some notoriety as innovators in fruit and vegetable growing and other horticultural pursuits. Not to mention that their genes and the environment they created produced their first-born son Henry who would blaze his own path as an innovator in horticulture. The irony would not be missed in the fact that Henry Marshall was named after his maternal grandfather, and young Henry would soften the gruff old man and become Moorhouse’s (only) favourite among the five grandsons Bob and Maud gave him.

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Maud and Bob Marshall with a selection of their produce. Photo: unknown

Or the storyteller might chose to elaborate on the secretive courtship, the ruse, the deception, the chase and the sweet victory of true love in Winnipeg. The collusion and collaboration by those in the know to ensure that the lovers were able to escape the disapproving father required some intricate maneuvering given the communications of the day. The lovers would be trying to leave unobtrusively. Upon learning of the plan Old Moorhouse would run his horses to the sweat trying to beat the lovers to the train, falling just short; guns blazing as the train sped out of sight.

The best stories are ones that are true for the most part but leave the storyteller some leeway to work magic at the edges of the veracity. What is the real story behind the elopement of Bob Marshall and Maud Moorhouse? Who pursued whom before old man Moorhouse pursued them both? Was Maud’s sister, Ethel, a co-conspirator seeing this as her way to avenge her father’s firm  refusal to approve her own potential marriage? Who knows for certain?  I hope I have the opportunity someday to return to these events so important to my family’s history.

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Henry Moorhouse and daughter Ethel c. 1927. Photo courtesy of Western Canadian  Pictorial Index, University of Winnipeg Archives

For now, I can only say with some certainty that there was love smouldering in my family’s gardens and orchards in those years and that realization is part of the impetus for me to reflect on love, sex and intimacy from the warmth and love generated within the confines of our present day Parkinson’s garden.

Okay, that is the first reason for writing this particular blog posting. As always, it is best not to charge ahead too quickly without understanding all of the antecedent reasons for proceeding.

Wife/Caregiver Takes a Lover

[The honourable thing may be to face the music and end the charade; just don’t expect accolades or applause.]

Some months ago I read an article that I can’t seem to get out of my mind. In Australia the wife of a Person with Parkinson’s, revealed through a Christmas missive to friends and family in 2015 that she had taken a lover while still living with, and caring for, her husband.

The Australian Broadcasting Corporation (ABC.net.au 2016) aired a documentary called The Three of Us: Carer, Husband and Lover which is about … well … about the three of them. The short story is this: Damian, Elaine’s husband, has early onset Parkinson’s and frontotemporal lobe dementia; Elaine, Damian’s wife and ‘carer,’ takes a lover, Trevor; Trevor becomes Damian’s friend, and lives a few blocks away from Elaine and Damian. Elaine and Trevor, it seems, are fine with this arrangement and she reveals all to the world in a Christmas letter – a commonly accepted vehicle for disseminating information – joyful and sorrowful – throughout the Christian world. This function continues even as social media gallops ahead of the Christmas letter curve primarily because the Christmas letter can disguise itself and hitchhike within the links and attachments of social media.

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Christmas letters bring joy and sorrow

I am not sure what to say about Elaine’s letter. Is it a joyful one because Elaine has found happiness and a new love? Is it sorrowful because the marriage between Elaine and Damian has broken down and Elaine has moved intimacy and “romantic love” out … and into another relationship? Is it sorrowful because Parkinson’s and dementia have robbed Elaine and Damian of the opportunity to maintain a ‘real’ marriage (“‘til death do us part”,) with long-term physical and emotional commitment including sex and intimacy? Is it joyful because Elaine has found the wherewithal to carry on as a ‘carer’ fulfilling another commitment in the marriage vows (”in sickness and health”) by providing tender loving care? Is it joyful that Damian and Trevor have established a friendship? Is it joyful for children and/or others in the family who are now freed from the worries of how to provide care for Damian? Or is that sad too?

Interestingly, the hit Netflix series Grace and Frankie has weighed in on the same issue using Alzheimer’s as the disruptive scenario. It is not surprising that mainstream entertainment is latching onto these moral issues as important topics for viewers. After all, millions of people worldwide face this dilemma every day. Grace meets a boyfriend (Phil) from her past. They each have a desire for this relationship to be rekindled when Grace discovers that Phil is still married to Elaine (ironically) who suffers from Alzheimer’s and drifts in and out of reality. Of course, this immediately raises the moral question of whether Grace should date and become a lover to a man still married to, and is caregiver for, his wife – albeit a wife who no longer has her full faculties. Spoiler alert: Grace decides initially that she cannot continue on a path to reunite with the old flame under these circumstances. In a later episode she reconsiders and the relationship continues with a steamy hotel meeting that is interrupted by a call notifying Phil that Elaine is missing. The realities of life with someone with Alzheimer’s hits home and the moral question lays there like ‘a turd on the rug’ as a former colleague of mine used to say. The last I remember Grace is calling the whole thing off … or not.

Wait! The Patient Has a View Too

[Hey! I am inside here, you know.]

Let’s return to the Australian Broadcast Corporation documentary for a minute. Journalist Kirsti Melville takes great care to say that she didn’t expect the husband, Damian, to have a coherent and cogent opinion about the relationship between Elaine and Trevor. However, as the making of the documentary progresses she realized that she was wrong on this score and that she should ask Damian for his views, as he deserved that much respect at least. I personally think that it should have been more than an afterthought but I am relieved that she came to see Damian as a human being affected both by the process and the decision. Quite eloquently, the youngest son expressed his wish that his dad not be “reduced to a list of symptoms,” and Melville seems to have taken that request to heart.

For his part, Damian does seem aware that his relationship with Elaine has changed and that he and Elaine each have a different relationship with Trevor. Damian seems to accept this reality with equanimity in the same way he accepts that his health is deteriorating, that he needs assistance and that life is now better under this new reality than it was previously. Do I sense a hint of relief on everyone’s part here? What if Damian had rejected the new arrangement? Melville concludes the documentary by saying that this is a “gorgeous story.”

As a sentient human being myself, albeit one that has Parkinson’s, the enormity of the sadness I feel whenever I consider the possibility that Anne (my wife and lover) and I would have a relationship other than the one we currently enjoy is so massive that it sends cold turbulence through my emotional self; an icy chill freezes all rational perspective; a numbness deadens sensation in my lips, fingers and hands; and a deafening silence fills a space previously filled with words unnecessary to be said aloud.

It is to be unthinkable, yet it is almost a certainty that Parkinson’s, Lewy Body dementia, old age and worn out body parts, or some combination of those conditions, will upset the apple cart. I am not in the least suggesting infidelity. Rather, I am admitting that changes in physical and mental health bring with them some new rules, and even if a relationship remains emotionally true and intact, it does not remain identical through each moment of time as each year unsympathetically exposes more warts and frailties.

Am I allowed to be sad about these eventualities creeping ever closer into our foreseeable future? Yes, of course. Is Anne allowed to be sad? Yes, of course. But let’s be clear; being sad about the probability of something happening in the indeterminate future is a poor way to live everyday life. It is far better to rejoice in the pleasure of the moment. Uh, oh. Is that too hedonistic? Not for this PwP. I have a pretty good idea about my long-term prognosis and I happily accept any burden hedonism might impose in the short term.

I apologize but unwittingly, I have strayed a little from the main point. Whether we are allowed to be, or should be, sad is not the question. The question is: Are we allowed to move on when (if) a significant change occurs in the conditions within which a relationship lives? That question is not so easy to answer.

On the basis of what you have read so far I wouldn’t blame you for concluding that I think Elaine in Australia is wrong to have taken a lover while caring for her Parkinson’s husband. But to be truthful, I am not sure. What I do know is that I am not qualified to make that judgement. However what I am qualified to do is to ensure that the voice of the person being cared for (the patient, PwP, disabled, person with dementia) is heard and not dismissed as being something other than compos mentis.

No Fighter, Including Muhammad Ali, Ever Went into the Ring Unprepared

[Is thinking too much about bad things a bad thing, or is it just that thinking too much is a bad thing?]

The longer you live with Parkinson’s the more you accept that it is a progressively degenerative disease. It will advance in a predictably unpredictable manner through stages – sometimes slowly and sometimes quickly.  You will feel each new symptom, or worsening of old ones, at the very moment that it occurs. You will choose either to ignore or deny the change but no matter how much you put your head in the sand it will wear you down until you accept the change as the “new normal.”  You are forced to admit grudgingly that Parkinson’s marches on as inevitably and steadfastly as life itself.  You come to understand that Parkinson’s travels incognito for years before it merges with the final steps of life’s journey to reach death, a destination it could not locate on its own.

Oh, there will be “cheerleaders” exhorting you to fight on, to resist, to beat the odds, to delay (or defeat) the advance of Parkinson’s. We all need encouragement to keep active – exercise, cycle, walk, run, swim, box, dance, do physiotherapy, do Pilates, do yoga, sing, play music, write, paint, garden, or do any other activity to keep our minds sharp and our bodies in fine fettle. In combination with diet, medical devices, pharmaceuticals (old and new) medical procedures and surgeries such as DBS (deep brain stimulation) or duodopa intestinal pumps and transdermal delivery systems, physical activity gains a better quality of life for us, over a longer period of time. The problem is: I know that, at the present time at least, I cannot outlive Parkinson’s anymore than I can outlive death, no matter how many cheerleaders there are on the sidelines.

There is a maxim, “We do not die from Parkinson’s but we will die with it” which implies that Parkinson’s is not a cause of death.  While it is largely true, it is not the whole of the matter. There are many symptoms of Parkinson’s which appear to aid and abet death at the very least. For example, The Michael J. Fox Foundation claims “the leading cause of death in Parkinson’s is aspiration pneumonia due to swallowing disorders.”  In addition to dysphagia we could add depression and loss of balance as other factors leading to death. You may have died of a brain injury when your head hit the ground, but the ‘real’ cause of death was that you lost your balance and fell because you have Parkinson’s.

Why does the maxim “We do not die from Parkinson’s but we will die with it” bother me? Aside from the fact that there is a question as to its veracity, it effectively minimizes the onerous path that Parkinson’s can take you along before you die. There is no cure for Parkinson’s, just as there is no cure for death, and I can expect that my body and/or mind will decline significantly along the way because my symptoms will intensify and multiply. Having Parkinson’s places your life at a point closer to death than it would be otherwise. In other words, you have a  shorter life expectancy if you have Parkinson’s.

Many of you will feel that I am being defeatist or depressing (if not depressed.) You would be wrong. If you want to give it the good fight you have to know what you are up against. No fighter, including Muhammad Ali, ever went into the ring unprepared. I am telling you though, that the mental preparation necessary to face the probability of altered personal and intimate relationships is the toughest preparation I have ever had to do, maybe even tougher than facing the physical demands of Parkinson’s itself. The energy and focus it has taken to write this blog post is but a small part of this preparation. There are no blueprints or manuals. The challenges are different for each individual and vary according to stage of disease development.

Of course, many PwP turn to clerics armed with Faith and religious texts or counsellors armed with knowledge from social – psychological studies to provide the  strength to buttress yourself against the physical, social, mental and spiritual turmoil you will face. Choose the approach (or more than one) with which you will be most comfortable as you travel on your journey: Yoga, meditation, Pilates, faith, spirituality, religion, love of family, exercise, or any other of dozens of choices, will give you peace and serenity.

I suspect that only the strongest of relationships are long-term survivors of a Parkinson’s diagnosis. After diagnosis it is not long before work colleagues and other friends drift away but they may well have done so anyway, after the workplace connection is broken by long term disability or retirement.   Outside of personal intimate relationships, the toughest loss to deal with is the loss of “close” friends who will exclude you because … I am not sure why. Perhaps, your interests and/or lifestyles diverge or they may buy into the belief that Parkinson’s is associated with cognitive decline. In the wake of such losses, I comfort myself with the knowledge that very few people keep good friends for a lifetime even in the most ideal circumstances. Still, these are not the relationships with which I am primarily concerned as my thoughts are focussed on relationships involving love, sex and intimacy.

What Does Baseball Have To Do With It?

[Whatever gave me the notion that people would continue to play fair when they fell “out of love” is beyond me.]

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The Major leagues were a long way from our little ball field. Photo: S. Marshall 2015

It might seem trivial at first but when I was a lad of about eight years old, Roy Campanella, star catcher of Major League Baseball’s Brooklyn Dodgers (1948 -1958) was one of my heroes. Campanella broke into the major leagues in 1948, one year after Jackie Robinson broke the colour barrier. Unfortunately, Campanella’s career was cut short by an automobile accident that left him a paraplegic. I thirsted for knowledge about Campanella back in those days but we did not own a television and radio reporting was sporadic in rural areas, although my little transistor radio could pick up faraway ball games on crisp late summer and early autumn evenings after local stations reduced their wattage. Moreover, there was no library in Altamont, Manitoba so my father arranged that I could have borrowing privileges with the University of Manitoba Extension Library from which I could order books to be sent by mail. I recall devouring The Roy Campanella Story by Milton J. Shapiro (1958).

Then about a decade ago I read something about the breakdown of Campanella’s relationship with his second wife that profoundly saddened me. The exact sentence is still fresh in my mind. “Campanella’s wife Ruthie, unable to cope with the loss of physical intimacy imposed by the accident, left him” (see Note 2.)  In other accounts I read that she would leave their home in the evenings flauntingly seeking male companionship. For some reason this repulsed me greatly and even though I knew that Campanella had his own share of infidelities over the years, I had great sympathy for him. I am not going to go into a long discourse on this matter other than to say that I was repulsed by what I perceived as a deliberate and flagrant desire on Ruthie’s part to hurt Campanella, a man who could neither fend for himself nor defend himself. I guess this is a variation of the old idiom “don’t kick someone when they are down” and appeals to some sense of “fair play” – that people should not play “dirty.” Is this an accurate interpretation? Probably not and it probably doesn’t really matter to most people, but that is how I felt when my brain first processed this information.

And Then Ruby’s Feelings Must Be Considered

[this song will not end with Ruby and her man getting back together.]

The perils of love, intimacy and sex as experienced by Ruthie and Roy Campanella was brought sharply back to my memory in the song, Ruby Don’t Take Your Love to Town written by Mel Tillis and originally recorded by Johnny Darrell in 1967. Waylon Jennings, Roger Miller, George Jones and many others have covered the song but it is Kenny Rogers’ release in 1969 that is accepted as the best version and a blockbuster hit. The original lyrics were about a veteran of the Korean War and his wife, but in the late 1960s people widely believed it to be about the Vietnam War and Rogers’ release of the song was very controversial at the time.

I personally don’t associate the song with either Korea or Vietnam but when I hear those mournful lyrics

It’s hard to love a man whose
Legs are bent and paralyzed
And the wants and the needs of
A woman your age, Ruby, I realize

I cannot help but think of Roy Campanella. Of course Tillis’ lyrics, written for public entertainment and mass consumption, are among the best in a long tradition of ‘hurtin’ country and western music, a mixture of everything good and bad about love and deception. In the end, even the murder of the offending wife is contemplated but that deed cannot be fulfilled leaving … what? … a disabled man helpless; Ruby free to do what she pleases; and a clear indication that this song will not end with Ruby and her man getting back together.

And if I could move, I’d get my gun
And put her in the ground
Oh, Ruby, don’t take your love to town
….
Oh, Ruby, for God’s sake, turn around

In any case, about a year ago I heard Ruby Don’t Take Your Love to Town and I remarked to some friends that I thought it was a terribly sad song. I relayed my understanding of the situation faced by Ruthie Campanella when Roy was left paralyzed and how she couldn’t cope with the loss of intimacy and sought to fulfill those desires elsewhere. Perhaps I have been too quick to criticize Ruthie (and Ruby in the song) because my comments were met with a sharp retort from a female friend, “For God’s sake, get over it! Why shouldn’t she find someone else?”

OK then. There we have it. Or, do we?

Romantic Love

[Unlikely as you may think it to be, some lads hunger for a tender kiss.]

When and where do boys first become aware of romantic love? I doubt if it is when they begin to read the sports pages or gossip columnist stories about sports heroes such as Roy Campanella or in the top 10 pop hits list of the entertainment section. I am convinced it happens much earlier but be relieved that I am not going to go into a psychological exegesis about memories of being birthed or suckling at my mother’s breast as my first formative moment(s). [I am not sure that I did suckle at her breast for any extended time, as breastfeeding was not in vogue during the 1940s and 1950s in Canada.]

But if birthing and breastfeeding were defining moments, I don’t recall it that way – in fact, I don’t recall that part at all. Rather, my first memory of such a thing called love between two humans – a love that was not a familial love but a love that encompassed intimacy – was the love my Uncle Henry and Aunt Eva had for each other, at least as I witnessed it as a child. Yes, this is the same Henry, first-born child of Robert and Maud Marshall after they eloped in 1915. In retrospect I am convinced that my aunt and uncle had a tenderness and a tangible common understanding of commitment that exceeded the norm for most other relationships – I say this confidently as I reflect on my own 60 plus years of study as a participant observer of human behaviour (non-scientific I grant you but observational data points nonetheless.)

As this is not a “tell all” blog post (it is hardly even a “tell something” post) don’t expect me to go into great intimate detail of my uncle’s and aunt’s lives spent in love, other than to say that there is something about a chance observation of a noon hour kiss on the lips, a genuine tender kiss, neither a peck nor a slobbering, groping tonguing, that left this small boy entranced, longing to know the secret to such an uninhibited demonstration of love. I witnessed this portrayal of affection many times in my formative years when my uncle would arrive home for lunch, having spent the morning in the gardens and greenhouses of the Brandon Experimental Farm. On occasion they were a little more demonstrative and disappeared into their bedroom for some cuddle time. I spent a few weeks each summer at the Experimental Farm with my cousins and the expression of genuine affection between my aunt and uncle never changed over that time. Low key, long term, lasting, love. What I witnessed was neither titillating nor tawdry but it was a powerful introduction to what I believe is the most powerful of human feelings.

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Henry and Eva Marshall Photo credit: unknown

It seems that my remembrances of my aunt’s full bodied gentleness, my uncle’s strong gardening hands, and their lips caressing in a short soft noon time kiss create the ideal segue for me to talk about love in our present day garden.

My Love Affair With Roses

[Thorny as they may be, it is impossible to plant a rose without giving it a hug. See Note 3]

Some might say that the men (and some of the women) in my family loved their gardens and orchards more than they loved their women (or men.) I like to think, somewhat selfishly I suppose, that the quantum of love is equal in each case and this is perfectly in order as long as the love for your human lover is of a magnitude required to sustain the relationship over a lifetime.

This history of love for gardens and orchards in my family may go some distance to explaining why I seem to be having a love affair with roses this past year. It is not entirely surprising that roses should seduce me now. Oh, we have always grown a few roses, mainly those developed by my uncle, Henry Marshall, who was instrumental in developing the Parkland series of roses at the Morden Research Station (see Note 4) but to say that I was crazy in love with roses before this year would be incorrect.

There is no doubt about it; this year is different. I now have a full-blown infatuation, or dare I say, fixation, or maybe obsession, with some specific species and varieties. Under normal circumstances one might interpret such a state of mind as being one of great joy but in the sanctuary of my garden, alone with my innermost reflective thoughts, the joy of being so intimately close to a beautiful rose that her love bites are evident in the sanguineous contrails on my arms, is often tinged with the sadness of knowing that my desires are partly the last ditch efforts of this gardener (the PD Gardener) to experience as completely as possible one of the most sought after perfections of love – roses – before he is no longer capable of the husbandry required for them to flourish and the mental acuity required to bask in the romance and intimacy that they proffer.

Not surprisingly I guess, I have been reflecting mightily upon life and love, especially life and love in a world with Parkinson’s disease, my constant and most abusive companion.   I have come to look to the rose, iconic as it is of love, to override the ravages of Parkinson’s, to perfume the ether for lovers whose wings take them to those lofty heights, to provide the beauty that is in the eye of the beholder. I desire desperately to be in that select category of “lovers” known only to poets, song writers and composers – you know those romantics who make you want to hurl your stomach contents into the shrubbery and who, at the very same time, make your insides come alive with butterflies of anticipation as you sense the presence of a new lover. [The difference between literary excellence and soap opera cheesiness gets a little muddied sometimes.]

It is small wonder then that this is the year of my love affair with roses. For this year I crave reassurance in all matters of love, especially as the staccato ‘rat-a-tat-tat” and “thrum thrum” of the advancing drums of Parkinson’s often obscures mellow intimate tones, and may even cause them to flee. The Parkinson’s drum corps is relentless in exhorting the destruction of the final few neurons capable of dopamine production. It has been a difficult year with many health challenges nipping at my heels at a time when I maybe won’t be kicking up my heels quite so much in the near future. I desperately hope this prediction is not the case and that The PD Gardener has many more years of flirtation with flora of all species.

In my sanctuary, in my garden, I stay the course, gather my strength and turn a deaf ear to Parkinson’s heartless beat. The garden works a therapeutic magic, magic so strong as to suppress temporarily the tide of muscle movement disorder and non-motor symptoms. It grants me peaceful interludes to reflect on my family and good fortune.  In the garden I am mostly a labourer, often a gardener, sometimes a landscaper, occasionally a naturist, once in a blue moon a horticulturalist, frequently a social historian, and always an amateur philosopher.  I know deep in my heart that each role cannot save me, individually or collectively, from Parkinson’s. But these roles, individually and collectively, provide vehicles through which flora in general and roses in particular (at least this year) seduce me into accepting that, even outside the garden, I am loved as much or more than I love.

Having a new desire, a new focus for your attention, is an important part of the seduction.  There are many new roses on the market making a trip to the nursery even more exciting than usual. I find myself hanging around the rose sections of various garden centres, surfing the Internet for new information and photographs, and being distracted anytime I come near a rose. I have relentlessly pursued some varieties, unsuccessfully as it turns out, until my children hooked me up on blind dates.

To be clear, my affections run strictly to shrub and rugosa roses. I have little interest in tea roses or other roses that I consider high maintenance and finicky. And if it is not hardy to our climate (zone 3 or possibly 4 in some isolated micro- environments in our garden,) I don’t have much use for it either. I am not a protective kind of guy when it comes to roses in winter and I leave them to fend for themselves no matter how severe the weather during those months. They live or they die. If they die I am sad of course but I accept no blame – winter is winter and largely beyond our control. Oddly, I do become more protective when it comes to hot weather or arid conditions. I do want the roses to survive heat waves (and we seem to be having more of these periods as the planet heats up.) I will water roses to keep them healthy and to ensure that they bloom profusely.

It is not easy to describe my love affair with roses but let me try by describing some romantic interludes with several “Rosa.”

Rosa x ‘Oscar Peterson’

I had my eye on several young roses but it was Rosa x ‘Oscar Peterson’ who lured me into a tantalizing, thorny and crazy love affair. This newest rose in the Canadian Artists Series is named in honour of jazz great, Oscar Peterson. I know, Oscar Peterson is male and I am not gay so what is the attraction? In my world, roses are always referred to as being female but in fact, roses are hermaphrodite plants i.e., they have both male stamen and female stigma on the same flower. Monoecious plants have separate male and female flowers on the same plant, and Dioecious plants have only one flower, either male or female, on each plant. Consequently feel free to refer to roses as female or male as is your desire.

Rosa x ‘Oscar Peterson’ is not shapely but is an almost compact square at 1.5 meters x 1.5 meters.  Its buds emerge with the colour of Creamsicles (one of my favourite childhood treats) before maturing into pure white blooms with yellow stamens – no less inviting.

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Rosa x Oscar Peterson  Photo: S. Marshall 2016

Oscar Peterson’s developers were clear in their evaluation of the rose that it met the standards of excellence exemplified by Oscar Peterson as a musician and they encapsulated those thoughts as follows:

“Oscar Peterson’s music was seamless, as if it flowed from his fingers like a spring of clear water. Those who understand music know that such perfection is the result of hard work and endless practice.”

“It is fitting that the new ‘Oscar Peterson’ rose has attributes of perfection. Its flawless, deep green foliage acts as a perfect foil for blossoms that appear as if from a never ending floral spring. These glossy leaves are the result of the hard work and patience of generations of breeders who have worked to create roses with superb hardiness, disease resistance and great beauty.”

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“The semi-double flowers begin life in a shade of softest yellow cream, especially in cooler weather. Often the tips of the petals are lightly touched by red. Soon cream turns to glistening bright white and a contrasting boss of golden yellow stamens. The flowers are arranged in sprays, and, like a musician who finishes his set with style, the petals drop cleanly away once the show is over.”

Far be it for me to attempt to wax more poetic than the above passage to explain why this white rose should be named for a Canadian black musician whose music captivates our minds and captures our hearts, rendering us defenseless to resist its charms. The subtlety and simplicity of the melody cavorting with the complexity of the phrasing plays delicately upon our emotions equally as much as it plays with our emotions, lifting us to the very height of hopefulness, far away from the din of despair. Don’t believe me? Listen to Night Train (released in 1962) the landmark album of the Oscar Peterson Trio (Peterson, Ray Brown and Ed Thigpen.) https://www.youtube.com/watch?v=Dyip9jykZ7o

For me, this is enough said. However, others who are more closely attuned to the sociological phenomena of race, culture and inequality have voiced their view that it is appropriate that the rose named for Peterson is white as it fits his blend of jazz – ‘White’ and not ‘Black.’ Others attribute this white rose faux pas as yet more evidence of a white culture’s ignorance of the racial dynamic.  I fear this horticultural and socio-cultural debate will have to await another occasion – perhaps when another of my favourites, Erroll Garner’s Concert by the Sea, can be introduced into evidence.

Rosa x ‘Emily Carr’

I really must apologize as I intentionally told you a little “white” lie in the previous section – Rosa x ‘Oscar Peterson’ was not my first dalliance in the Canadian Artists series. About three years ago we came upon Rosa x ‘Emily Carr’ with her clusters of deep red blooms calling out for your attention at all hours of the day … and night for that matter. While she is advertised as being wider than she is tall, in our garden she sends up canes 8 feet tall (almost like a climber) on which she proudly displays clusters of  gorgeous blooms continually through the hot and steamy summer.  Surprisingly though she does not rest until a hard frost halts her in her tracks.

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Emily Carr Photo: S. Marshall 2016

“You come into the world alone and you go out of the world alone yet it seems to me you are more alone while living than even going and coming.” ~ Emily Carr

Such a bleak picture to paint. Being alone is a complete package from birth to death and in between. It can be a sad thing but it need not necessarily be so and we often choose to be alone at various times in our lives. Indeed, we are often happy to be alone at those times. Being lonely though is a different matter and is by definition sad as it means the soul is not being nourished. I am not a religious person so I will resist the temptation to speak of faith in a Supreme Being as nourishment, but I know for a fact that the “quiet nothingness” of a loving relationship with another sentient being is indeed nourishment for my soul. [I will elaborate more on “quiet nothingness” later.]

 “Be careful that you do not write or paint anything that is not your own, that you don’t know in your own soul.” ~ Emily Carr

This is a most difficult stricture to follow but I have to say that, even as a want-to-be author, when I do know something in my soul, the words fly off my fingers as if by ordinance finding their place on the page even before meaning, context or content is fully fleshed. Conception and birth occur in one singular flash and there is no room to be alone in that moment of spontaneous combustion, that instance of chemical reaction, that indefinable electrical spark giving life to foggy neurological pulses within our brains.

However, if you have been fortunate enough to know that “quiet nothingness” of love “in your own soul,” you will spend your lifetime searching for ways to express it. I have no intention of competing with Elizabeth Barrett Browning’s straight to the point question in Sonnet 43 How do I love thee? (see Appendix A.) Let me count the ways, of course. But that is exactly what knowing love in one’s soul should be. While the letters may fly off my fingers, I still search for words, phrases and punctuation to convey the perfect image for love. I invariably fail as my talents as a writer are woefully inadequate to meet the task. I do not possess otherworldly attributes necessary to paint the page with words that would liberate love from the constraints of a Parkinson’s world where one’s soul, no matter how willing it is to being a host for love, is rarely sought out for that purpose.

Rosa x ‘Hope for Humanity’

It was in a previous quest for a rose to represent Jean Madill, a centenarian from Altamont, Manitoba, that I began to explore the depths of the new roses. “Hope for Humanity” attracted my eye not only for its beauty but for the political statement that she makes – it is uncommon for the names of roses to be overtly political but Dr. H. H. Marshall did not shy away from politics when he named one of his roses, Adelaide Hoodless, an early suffragette and feminist with both conservative and progressive tendencies which was not uncommon for women of her time.

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Rosa x Hope for Humanity   Photo: S. Marshall 2016

Oh, There Were Others, I Confess

[… and they are all named Rosa ….]

I am afraid that there were others on whom I showered my affections and with whom I spent more than a few afternoons cavorting in the dappled shade of the garden; a few mornings frolicking with my toes moist with dew; hypnotized in cold early October by silvery ‘pre-crystalline’ raindrops on leafy vestments; hungering in early summer for the sweet nectar enjoyed by their rotund Apis mellifera lovers but forbidden to me; caressing the softness of their blooms whilst striving (unsuccessfully) to avoid the bloodthirsty thorns protecting their bodies; being intoxicatingly dizzy from the fragrance of forbidden love in the dusk of the day (or perhaps it is intoxicated by their dusky fragrance at any time of the day.) I say this unashamedly as I now admit openly that I have succumbed to their big city, sophisticated, hybridized ways.

Should I name names? I am not going to go into great detail about the attributes of all of these loves, all named Rosa, as it will be too time consuming, but there are several that deserve more attention. See Appendix B for still others.

Rosa x ‘Campfire’

‘Campfire,’ named after a famous painting by renowned Canadian artist Tom Thomson, was released in 2014. The description on the Canadian Artists series website pretty much says it all.

Campfire, the painting , shows a fire burning in front of a tent lit inside by a brilliant yellow light. It is a masterpiece of design and colour. The rose ‘Campfire’ is afire with the same smouldering blend of yellows and reds.

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Rosa x Campfire Photo: S. Marshall 2016

Rosa x ‘Campfire’ shows a profusion of blooms with colours that are both bedazzling and mesmerizing. Of course I am drawn back to my childhood and the many times I stared into the flames of a campfire while camping, at a family “wiener roast” or at the teenage triple X rated (for offensive language, drunkenness, overt attempts at sexual activity however inept, and outright teenage stupidity) version of a wiener roast. No matter the context, you cannot help but be drawn into Campfire’s flames where your desires, excited by the heat, race through your arteries in a desperate attempt to carry oxygen to the “smouldering” coals, freeing any inhibitions. If you place ‘Campfire’ within the context of sex, love and intimacy, its mass of blooms might very well conjure up the word “orgy.”

Rosa x ‘Bill Reid’

Rosa x ‘Bill Reid’ is a rose I longed to acquire because we had no surviving yellow or gold roses in our garden. A small yellow tea rose did not survive the winter a few years ago leaving us without the sunny spectrum. ‘Bill Reid’ is named for a legendary broadcaster, writer, poet, storyteller and communicator who introduced much of the world to the art traditions of the indigenous people of the Northwest Coast.

“His legacies include infusing that tradition with modern ideas and forms of expression, influencing emerging artists, and building lasting bridges between First Nations and other peoples.”

“He combined European jewellery techniques with the Haida art tradition. His passion for Haida art was kindled by a visit to Haida Gwaii in 1954 when he saw a pair of bracelets masterfully engraved by the great master carver and his great-uncle, Charles Edenshaw, after which, to use his own words, “the world was not the same”. For the next 50 years Reid embraced many art forms. His many powerful sculptural masterpieces include The Raven and the First Men, the Haida creation story, and The Spirit of Haida Gwaii, showcased at the Canadian Embassy in Washington, D.C. and at the Vancouver International Airport.”

“The Bill Reid rose is reminiscent of the medium the artist Bill Reid often used: gold. The rose itself has a vibrant golden hue, which it retains even under the strong rays of the summer sun. The colour denotes energy, warmth and vitality. And much like the artist, the Bill Reid rose flowers prolifically, more so than other yellow roses. In true Canadian fashion, this rose is hardy to zone 3.”

Needless to say I was thrilled to come across Bill Reid, quite by accident, at the garden centre. In fact, it was early one Monday shortly after opening, and I was at the cash when a supplier for the nursery was unloading a small wagon load of roses. There was Bill Reid, tucked in the back of the wagon, in full golden glory highlighted by the early morning sun. I asked if it was for sale and was told yes but it hadn’t been priced yet. I was unconcerned about the cost as I was smitten with it from first sight and after the business dealings were completed I whistled my way home excited by the knowledge that I would soon hug Bill Reid and position him in a suitable sunny spot.

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Rosa x Bill Reid      Photo S. Marshall

Every once in awhile there are love affairs that remind you that the course of young love does not always run smoothly and that you should be cautious, especially in the early stages. So it was with Bill Reid. It was not long before I noticed some vile critters inhabiting Bill’s foliage and blooms. They looked very much like the Japanese beetles that have a voracious appetite for soft rose petals. Immediately I began the ugly process of picking the beetles off and depositing them in a solution of detergent and water. As I write this, I have quite a horrific soupy mess in that container. My objective is to contain the invasion although I have discovered that the beetles also love Canna leaves and Lythrum flowers. After several days my picking finally slowed down but I am realistic enough to know that an infestation will be avoided only if my neighbours are as diligent as I am in harvesting the little buggers (a word my father would definitely use in this circumstance.) To make matters worse the Japanese beetles dine on some 200 different species of plants. I will make every effort to avoid using pesticides.

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Japanese Beetle   Photo: Wikipedia

The meeting and courtship of Bill Reid was quick, easy and intense. However, as is often the case, inattention to certain health matters may strain the relationship in the short term if not in the long term.

Rosa x ‘Marshall’s Peace Garden’

Rosa x ‘Marshall’s Peace Garden’ is a ‘sport’ of the popular Morden Blush, bred by Dr. H. H. Marshall and a favourite of ours for many years. I am counting on Marshall’s Peace Garden to capture my heart and make me blush with its abundant creamy white flowers and glossy foliage on a tiny 2 ft. x 2 ft. frame. I am told that it has a wonderful fragrance but as I have Parkinson’s most of my sense of smell disappeared long ago. Listed as hardy to zone 2 there should be no winter-kill problems in our area.

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Rosa x Marshall’s Peace Garden          Photo: S. Marshall 2016

My particular affinity for Peace Garden stems from the fact that it is named in honour of my uncle Henry who was a member of the Board and Horticultural Planning Committee of the International Peace Garden (see Note 6.) Peace Garden was propagated by Terry Roszko, Canada, circa 2000 and introduced commercially in Canada by Jeffries Nurseries Ltd. in 2012 as Marshall’s Peace Garden Rose. In fact, the specimen that I planted just this morning was a gift from my daughter and her partner who made a side trip to Jeffries Nurseries while visiting family in Manitoba, carefully bringing Peace Garden’s spiky fullness as carry on luggage on their flight home. I had been trying to source Peace Garden locally without success. When my daughter and her partner surprised me by introducing Peace Garden on a blind date if you will, the excitement of meeting this unexpected and beautiful rose was palpable.

Sex, Love and Intimacy

[Put sex, love and intimacy together in one human relationship and ....]

OK, enough with the roses. Back to the main topic. Many people are too shy, inhibited or embarrassed to talk openly about sex, love and intimacy, preferring to keep such information close to their vests or perhaps close to their hearts? Others succumb to a commonly held societal belief that these emotions and thoughts are “dirty” and not to be discussed “in polite company.” Still others would allow that only researchers with a PhD in psychology and a specialization in sexuality be permitted to explore these basic elements of human instinct, analyzing and discussing it in ‘academic – speak.’ Heaven forbid we should actually feel something.

Sex, love, and intimacy are three of the most important words in the language of relationships but I suspect that they are three words often shunted to the sidelines because, when spoken aloud, these words cause us to be awkward and self-conscious about what we perceive to be personal and private matters. Yet, love, intimacy and sex make sense only in the context of a relationship between at least two individuals so absolute privacy is automatically abandoned upon the necessary formation of a single dyad (sounds like an oxymoron.) In other words, by definition, there is always someone else who has inside information on your love life, your comfort level with intimacy, and your sexual proclivities. So, let’s not get too hung up on an argument that personal and private matters are … well… personal and private, belonging only to ourselves as individuals.

It is also the case that love, intimacy, sex are often compartmentalized and treated each unto itself as a separate concept, with separate meanings and a separate set of feelings … and sometimes they are distinct. Language, being the primary vehicle for discourse among humans, must possess a certain precision that enhances understanding. But surely that does not mean that we must always drill down in a reductionist way to the most infinitesimal element. Having said that, while it is true that a convincing argument can be made that love, intimacy and sex can be defined individually, it is only when these three powerful human emotions and behaviours are put together in a ‘mash up,’ as younger folk say these days, that the truth is revealed. They are really individual recognizable segments of something that is greater than the sum of its parts. Regular readers will recognize this as a recurring theme in my posts – society is greater than the sum of its parts. I blame it on Emile Durkheim and my training in sociological theory.

Let’s complicate things just a little more by adding that in today’s world much emphasis is placed on the use of “clear language” in an attempt to cut away the superfluous, to enhance communication so that ideas can be discussed with equal precision among all participants irrespective of class and other social or economic divisions. I understand the necessity for clear language in many situations but I don’t subscribe to the “clear language is always better” approach. I believe that it takes many levels of discourse to understand the complexities of life. Oh sure, sometimes language is frustratingly complex, unnecessarily obtuse, and gratuitously verbose but a living language will evolve both to smooth out the rough edges of precision and to give precision to the softness of fuzzy articulation. The aggregation of several meanings into one concept or construct is one such smoothing technique which allows language to reach precision through a higher level of discourse.

Let me illustrate it this way: put love, intimacy and sexuality together in one package in the entertainment industry and you have a blockbuster hit rocketing to the top of the charts – “number one with a bullet” as DeeJays used to say. It will hit the jackpot, be a winner, a jewel, and ‘toadilly awesome.’ It will also, most likely, be fiction. But put love, intimacy and sex together in one human relationship and … well … (thinking … thinking … thinking)… there are no words …. and it (the love, the intimacy and the sex, individually and collectively) will inevitably be real –  often sought, rarely realized.

I know, you are thinking, “The PD Gardener is off on one of his tangents again, spouting off about things of which he knows nothing.”  Hmmmm … maybe, maybe not.   Stay with me to find out if I can tie up this seeming stream of consciousness with a pretty bow.

Love is “Quiet Nothingness”

[ … a life free of drama …]

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Image from Wikipedia

Obviously I am not the first to have contemplated the complexity of sex, love and intimacy and the importance it plays in our lives. Cheryl Saban has a series of short posts on the topic that are worthwhile reading. I am not going to summarize her thoughts but I will draw your attention to a couple of specific observations. The first of which is that she is writing from a woman’s perspective when she observes that a female’s sex drive is more than just survival instinct.

“As a species, our sex drive is a survival instinct. But as a female, your sex drive is obviously more than an instinctual need; it’s wrapped up in feelings of comfort, love, companionship, excitement, naughtiness and hope.”

Well, I have news for you; these feelings are not reserved for females alone. Still, I suspect that in my early, more macho male life, my desires and emotions were not anchored in this approach. I had a process of maturing to go through, including a divorce and a somewhat painful but finally fruitful search for my – Gawd, I can’t believe I am going to say this – “soulmate.” As much as it pains me, I will leave the forgoing sentence in tact as “soulmate” does have meaning in romantic discourse to most people and that is that common understanding I wish to convey here. But there is more. In fact, what I was searching for and what I found was a relationship where love, intimacy and sexuality are in a state of ‘quiet nothingness.’ [Okay, I am counting on you not to shout “drivel” and hit the escape key to exit this nonsense. Please bear with me.]

Do not take this literally to mean that sex, love and intimacy are nothing because it is impossible to conceive of “nothing” unless we also acknowledge the existence of “something.” Put differently, we can approach a state of “nothing” but we cannot achieve a state of “nothing”.  To approach “nothing,” “something” is minimized or simplified to its most basic ‘somethingness’. I like to think of it as an expensive sound system with a complicated soundboard where all the elements of great sound are captured but everything is turned to its minimal reading. We hear nothing but the lights are lit and flashing. Intimacy, love and sex are in “quiet nothingness,” simmering, occasionally showing energy genuine to each element but always at the ready to arouse positive emotion. The simplification and minimization means that the relationship is held in tact with little work. Achieving this state of “quiet nothingness” is to achieve a state of togetherness of two minds and bodies, perhaps analogous to Zen. A key descriptive phrase for me is “free of drama.” I have been truly fortunate in that I know first-hand what that state of mind and body feels like … but it can be fleeting if one is not careful.

It is no secret that the soundboard controls the eruption of displays of energy from time to time.  When such energy is incorporated into the structure of the music for example – as a bridge, a chorus, refrain, verse, coda (or in any other creative way)  – the music and the sound can approach such perfection that only a highly trained ear can detect the subtleties defining it as otherwise. It is the same with the “quiet nothingness” of love … flying low in stealth mode beneath the radar … lethal in its efforts to target and destroy thoughts and behaviours that inhibit intimacy, and … complicit in bringing to life a sexuality  which would be declared illegal by those who have not experienced “quiet nothingness.”

Parkinson’s is a Troubled Dance of Rationality and Irrationality

[“The only thing we have to fear is fear itself ….”]

Parkinson’s is such a complex of motor and non-motor symptoms that in its early stages we often overlook symptoms related to our psychological well being e.g., it increases anxiety and stress, plays with our emotions and leads us towards feelings of depression and sometimes despair. So we begin a troubled dance between rational and irrational thought especially when it comes to love and intimacy.

I reason (rationally and correctly I believe) that the further I travel along the Parkinson’s road, the greater the probability that the usual nasty features of Parkinson’s including Lewy Body dementia will compromise my ability to sustain an intimate relationship.  How tragic that would be! But let me be clear: as I write this there is no tragedy in my life and each day is replete with reaffirmation of my love for Anne and her love for me. Still, even the most serene individuals have anxieties and are susceptible to irrational thinking from time to time. Parkinson’s provides sustenance for those anxieties, keeping them on a slow burn until fear and insecurity blows them out of proportion.

Fortunately most anxieties are relatively minor and can be handled effectively with planning and successful experience e.g., anxiety about how Parkinson’s will behave when traveling or when attending a special event. Other fears are more serious e.g., a fear that your Parkinson’s creates an unbearable burden for your spouse, partner and/or lover leading to a tragic end to an intimate loving relationship. In matters of the heart the emotional roller coaster of Parkinson’s can entice you into jumping too quickly and erroneously to that conclusion. In fact, insecurities may spawn unacceptable jealous behaviours that put enormous strain on intimate relationships, perhaps to the point of breakdown.

You might ask the question: Why would a PwP want to destroy happiness and contentment and replace it with a tragic heartbreaking ending?  Rationally, there are no compelling reasons to do so but when you are trapped in the world of irrationality where Parkie lives, fear can become an almost crippling burden, and if we are not careful, it can become a self- fulfilling prophecy.

Perhaps Sir Francis Bacon was correct when he wrote “Nothing is terrible except fear itself”) or maybe we should attribute it to Franklin D. Roosevelt, the 32nd President of the United States, who said in his first inauguration address on Saturday, March 4, 1933

“… let me assert my firm belief that the only thing we have to fear is … fear itself — nameless, unreasoning, unjustified terror which paralyzes needed efforts to convert retreat into advance.”

Parkinson’s disease is a fearsome thing. It can strip you of every dignity at a moment’s notice if you are not attentive to your medical, pharmaceutical, psychological. dietary and physical regimes. It is not stretching it to say that Parkinson’s plays a wicked game of chicken with you in your social relationships. It dares you to consider that it has not diminished you. Maintaining your mental strength in the face of such a challenge is extremely difficult because you notice and feel any newly acquired Parkinson’s symptoms so acutely that you are certain the unreasonable demands of your Parkinson’s are denying your spouse, lover, partner a full and complete life. The threat to the viability of your relationship is real and you take full ownership of that ‘failure’ because it is your Parkinson’s disease that is responsible.

Not only is the PwP responsible for the burden but the onus and indeed the impetus is on that same PwP to “free” her/his lover so that s/he may leave the relationship (or any part thereof) to pursue a full and more complete life elsewhere, maybe with someone else. Voilà, guilt free extraction from a life of burden for which you ‘did not sign up.’ Okay, maybe there is some guilt but it is ameliorated by a complex of rationale and justifications. These fears and insecurities are real to a PwP … well, they are real to me anyway.

Facing a life with Parkinson’s alone is extremely difficult. Facing those travails as a couple in an intimate relationship or as a family can make the journey more tolerable but it also means that the path may grow bumpy if one of more of those individuals go outside the understandings of the others. If the commitment is love and the understanding is that love is sexual, intimate and forever, and one individual no longer accepts this commitment, the whole deal goes sour – sometimes very quickly.

I am in a loving relationship and I would never say that my lover should end it because I have Parkinson’s. Why would I be so foolish? We have a love that is exquisitely painted, as if the muse was in full control; a love with great swaths of colour and texture like fields of lupins strewn in purposeful abandonment by Mother Nature; a love brushed into place with the precision of computer technology and the creativity of the Group of Seven.

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Mother Nature’s portrait of a field of Lupins   Photo: S. Marshall 2014

It is true that Anne does provide care for me … but she does not identify herself as my caregiver nor do I want to reflect her role back to her as that of being a caregiver. Anne is my wife and lover. It is also true that I thank her every day for her support … but I am most thankful that we share a love that is not rooted in caregiving. My greatest task is to return her love by projecting myself as her husband, lover, friend and not as her patient or worse, as her burden. Maintaining and strengthening relationships is much easier if one can avoid using pathos as the glue that holds the relationship together.

Relationships and Adversity

Okay, so far so good, but the bad news is that “quiet nothingness” is not impermeable and there are many threats to its fabric e.g., a diagnosis of a terminal or chronic disease not only changes how you perceive yourself but how others perceive you. This certainly has been my experience after a diagnosis of Parkinson’s disease – a progressive neuro-degenerative disease for which there is no cure. Oh, there are medical, pharmaceutical, physiotherapeutic, psychological, and exercise/movement programs designed to enhance quality of life but inevitably your life will take a path that you would not choose if you had a choice. The rules of the game for relationships may change and the potential for increased tension and stress increases along with a concomitant likelihood that “drama” will result.

When a relationship is under stress you might think that the survival instinct would kick in to override any “soft” emotional feelings, but that is not what happened to me. By the time of my diagnosis of Parkinson’s, I was in my mid – 60s and procreation was far behind me. I already had four perfect daughters in a perfectly blended family.

When I attempt to isolate the key factors contributing to my emotional well being, I am hard pressed to come up with any that are more important than feelings of self-worth. You see, Parkinson’s robs you of your sense of self-worth; it diminishes you. Like a thief in the night it silently robs you of your ability to be the strong one in a relationship. Ironically and wickedly, that same attack on self – worth robs you, as a person in need, of the ability to accept assistance and care, and you can lash out at those who care the most; those who love us; those with whom we have intimate relationships.

If you do have an illness though, life and relationships can change drastically. Karl Robb sums it up this way,

“Realize that an illness can either help bring you and your partner closer together or push you further apart, depending upon how well you are able to cope with challenges and the strength of your bond, prior to illness.”

I am not as charitable as Robb in that I don’t think that Parkinson’s brings many people closer together, at least not in the long term. There is no cure.  It is progressively degenerative and it will advance in both the number and severity of the symptoms.  No matter what some people say, you cannot delay its onslaught forever. It will catch up to you, one way or another.

Indeed, my perception is that if you and your partner didn’t get along well before your diagnosis, it is a good bet you won’t get along any better after diagnosis and certainly not after nasty symptoms or side effects of the drugs begin to rear their ugly heads – dementia, dyskinesia (exaggerated involuntary muscle movements which are often the side effect of the drugs,) cramping, difficulty swallowing, loss of balance resulting in falls with injuries, incontinence, constipation, rigidity, Bradykinesia (slowness), decreased sexual desire and increased sexual dysfunction, hallucinations, violent lashing out during vivid dreams, and loss of the ability to conduct activities of daily living, to name but a few. None of these symptoms are known to increase the likelihood of developing an intimate relationship if there is no prior history of such a relationship between individuals. Parkinson’s works against you every step of the way.

The Importance of Intimacy

[As we slide closer to each other, my lover whispers provocatively, “… and she felt the gardener’s work roughened hands on her skin …”]

When Parkinson’s destroys intimacy in a relationship, it wins. You slip from being lovers to being caregiver and patient, a misstep (in my view) that changes how each person perceives the other person and in the end destroys any sense of self-worth a PwP has remaining. Once the non-PwP in the relationship believes that intimacy, love, sex (and sexuality) are no longer important in the relationship, the gig is up. I hasten to point out however that the same is true if a PwP is no longer is invested in maintaining an intimate relationship with her/his partner.

Cheryl Saban describes succinctly just how important romantic intimacy is.

“Romantic intimacy and the idyll of two people bonded in love, that most sacrosanct of emotional states, is something most of us desire and in fact, need. Love is a crucial part of our lives, connected as it is to our sense of well-being and worth. The blend of love and sex requires commitment, a special type of chemistry between the two of you, and an ability to build intimacy.”

Intimacy is a word that is both innocuous and intimidating. At first glance, it seems to be something less than ‘love’ but upon closer examination it is a keystone in the foundation of close relationships. Being intimate with someone, while not the same as being in love, is something we are likely to experience with very few others in a lifetime … if we are so fortunate.

Jonathan Lenbuck in “How does sex differ from intimacy,” defines sex and intimacy in ways that I find very helpful to understand the role Parkinson’s plays in relationships.

“Intimacy is at the heart of a strong relationship. Intimacy is about knowing someone deeply and being able to be completely free in that person’s presence. It is an emotional state that is often reserved for just one person.”

“Being intimate with your partner requires you to be open and honest with him or her, and it is from this state of intimacy that great sex grows. This can sometimes be a hurdle in a relationship.”

Undoubtedly, young onset PwP are at a time in their lives when dating and sexual relationships occupy proportionally greater space in day-to-day relationships compared to those of us who are diagnosed in our 60s and heading into our 70s. A reduction in the amount of time, effort, money, etc. put into a sexual relationships is likely for those 60 years of age and older, but don’t ever fall into the trap of believing that it occupies no space in those relationships. On the contrary, love, intimacy and sex may be more central to living a healthy life with Parkinson’s (is that an oxymoron?) than we think. Hopefully some of us have found a relationship that satisfies our physical and emotional selves. I was going to say that some are patiently waiting for such a relationship but it is more likely that they have given up the quest, giving in to impatience rather than patience, resigning themselves to never finding this nirvana. Some are living in relationships devoid of love and intimacy (and probably sex) but do not take measures to change. Some of us live a bittersweet existence with memories of the ecstasy of being in love and the heartache of a life gone too soon.

Pay Attention

[Be careful, the rules can change…]

Parkinson’s changes the rules of intimacy. The inability to show emotion (particularly laughter) through facial expression, (the “mask “associated with Parkinson’s) can change the dynamic of a relationship which relies upon knowing and almost invisible facial cues and eye contact. Involuntary muscle movements can make even simple loving actions such as hand holding or cuddling impossible or so difficult as to be frustrating for both you and your partner. The excitement of close sexual contact – so thrilling and rewarding in the prime of your life – is often turned cruelly against you, as if your Adrenalin has been turned on to hyper speed, increasing debilitating involuntary muscle movements and rendering both intimacy and sexual gratification unattainable. Such frustration can exacerbate issues of erectile and sexual dysfunction already prevalent in Parkinson’s.

Changes in self-perception and how others see you can spark a destructive mutually reinforcing downward spiral (the more your self-worth is diminished the more you engage in behaviours that reinforce that self-image and the more you project a picture of low self-esteem to others which in turn contributes to others behaving differently towards you and on … and on.)

No matter the stage of the progression of Parkinson’s, any couple in an intimate relationship will face the almost ever-changing challenge of maintaining a relationship that provides food for the emotional self. The European Parkinson’s Disease Foundation (EPDF) has an excellent article on intimacy, sex and sensuality.

“If you are in an intimate relationship then you will both probably experience some difficulties regarding intimacy, sex and sensuality. These can be associated with anatomical, physiological, biological, medical and psychological factors, all of which can impact on self-esteem, quality of life, mood and relationships.”

In no uncertain terms, the EPDF alerts us to potential dangers and urges us to pay attention to intimacy, sex and love because they impact on our sense of self – worth and our ability to combat Parkinson’s, to the extent that we can combat it.

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It may appear beautiful but it is quite frozen and dead  Photo: S.Marshall

Some may argue that intimacy can be based on caregiving. Perhaps, but that intimacy is of a different nature – in fact, it is nurture. Nurturing can be intimate but it is not the whole of an intimate relationship – the “quiet nothingness.” The step from sexual intimacy to caregiving intimacy is a large one. Once one stops desiring a partner sexually, perceptions on both sides of the relationship equation are turned – probably irrevocably forever. At this point it matters not whether your mother/father, your sister/brother, your wife/husband, or a paid caregiver from a public not-for-profit or a private for-profit agency is caring for you. The intimacy is gone – and you just can’t get it back.

Conclusion

[We carry these desires with us to death, illness or not]

If you think that Persons with Parkinson’s (PwP) are not sentient, sexual, sensual human beings then disabuse yourself of that notion immediately, especially if you are the significant other of such a person. I am entering the “early elderly” – a stage of life where I do not wish others to deny my right to desire love and intimacy. If you think that we don’t have such desires, you diminish us as human beings.

If you have accepted “cargiving” as the only meaningful relationship that you share with your PwP partner, then at least understand what that means for each of you. As a PwP, I would be grateful for the care, but I would saddened immensely more by the loss of love and intimacy – you see, that loss transforms care giving into an obligation and therefore a burden.  It is likely that by the time this transformation took place, I would be incapable of doing anything about it, other than to look quite pathetic and therefore even more expendable in emotional terms, making the situation all the more catastrophic and tragic.

Finally, I may have Parkinson’s disease but I am not looking for a caregiver, I am looking for love.

AFTERWORD

[You never promised me a rose garden …”]

This has been a story of family, love, sex, intimacy, fidelity, roses, Parkinson’s (the rational and the irrational) and its ravages, self-worth and relationship survival. I hope it has provided some insight into what a PwP … well this one at least, thinks about these matters.

Ever since I began my affair with the roses this past summer, my lover is fond of saying, “ you never promised me a rose garden but I should have known better because I am married to The PD Gardener.” My comment is that The PD Gardener (both the gardener and the Parkinson’s disease) was residing within me when we met, courted and married but Parkinson’s only stepped out of the shadows recently. The rose garden though is a family characteristic. In many ways it is a family heirloom. It came with me but I did not create it.  Roses are my link to the past, my anchor in the present, and my guide to the future with the additional benefit of being an iconic gift to my lover.

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The PD Gardener and his lover 2015

I sometimes joke that the irrational thinking arising from Parkinson’s gives me only one fundamental concern. Anne has a brother and a sister and each of them has been married three times. This is the second marriage for both Anne and me.  My concern is that Anne may wish to marry a third time to catch up to the family average (it’s a joke remember.) Of course, there is every likelihood that Anne will outlive me and she may well marry again after I have left this mortal coil. Let it be known that with whatever ego that Parkinson’s has not stripped from me, I do fantasize that I am her one and only great love … but I know that our “quiet nothingness” does not include unreasonable strictures that exceed the bounds of my lifetime.

My most fervent desire is that our relationship continues on in “quiet nothingness” – love, intimacy, sex, all with no drama. However, if there is to be drama let it be with my caregiver and not with my lover.

The path through this blog has been circuitous as usual: from the elopement of my grandparents to a PwP’s wife taking on a lover; from baseball to country and western hurtin’ music; from love affairs with roses to the many ruminations of a PwP on love, sex, and intimacy; from fear to insecurity to trouble to “quiet nothingness;” and much more.  I began this journey with ruminations on love, sex and intimacy. It ends as a love letter, a love letter that reveals my deepest fears and codifies my unwavering love and commitment to provide nourishment for an intimacy my lover and I will share over our years together.

NOTES

  1. Geez, two paragraphs into a posting about love, sex, intimacy and Parkinson’s and I am already bringing down the mood with a “Note.” Sorry about that but I find it necessary to provide some context and juxtaposition for these concepts and to advise that these words are always presented “in no particular order” throughout this text.  Sex is the “hard” word in the triumvirate and intimacy and love are the “soft” words. Sex can be reduced to the enactment of basal instinct while intimacy and love rest in the innermost niches of our secure selves (when all is right.) Love is virtually impossible to measure – according to MarsBands.com there are over 97 million love songs in the world. Intimacy is often secretive and may be intimidating. Sex can be either a dominant feature or a silent partner and sometimes masquerades as “sexuality,” a seductress embodying desire and lust. In any case, rarely are all three found in perfect harmony within a single human soul. Such harmony is contingent upon the degree of equilibrium (and disequilibrium) created by these three powerful human forces as they sing together – either in harmony or discordantly as the moment commands. Mastering the harmony, the contentment, and the equilibrium is one of our greatest challenges to ensuring that a soul is at peace.When communication between two individuals is sufficiently advanced to articulate such contentment, [I bet you are thinking that I will say “two souls become one” but nope – too sappy, done at too many times at too many weddings] then tranquillity and quietude subsumes all tempests in human emotion, whether in a teapot or on stormy, high seas. There is no need for these souls to be lashed to the mast; they are free yet secure against the buffeting of dark forces within our psyche and free of any temptation to follow the song of the Sirens (female and male.)
  2. Encyclopedia.com, Notable Sports Figures | 2004 | Belfiore, Michael copyright 2004 The Gale Group, Inc.
  3. It is impossible (for me at least) to plant a rose without giving it a hug. As I lower the root ball into the already watered hole, I reach around her to ensure that she has the proper orientation and that I can reach the excavated dirt on all sides in order to scoop in handfuls around the rose’s roots. I hand tamp it firmly into place and placing my hands on top of the soil near the base of the union, I give it a final firm caress and press the soil snugly around her. In the summertime, I am most often in the garden in a short sleeve T-shirt.   The result is predictable. I look down at my arms to discover (once again as I never seem  to learn) that my rose has decided to object to the cuddling, if not the coddling, and has bitten me in several places, severe enough to draw blood, running down my arms in streams, drying and sticking to my hair as it as it flows, giving it crime scene worthiness as an image. More than once I have emerged from the rose garden to shouts of “Don’t you get mud and blood all over the house!” And later I am treated to sighs of resignation as my lover states the obvious, “I am married to the PD Gardener. What did I expect?” For my part, I continue to hug my roses as necessary throughout their existence and my arms get punctured and leak blood occasionally. [Did I mention that I hate long sleeve heavy work shirts?]
  4. The Winnipeg Free Press notes that “Marshall, cross-breeding with wild roses he dug out of ditches, oversaw the introduction of over 40 new rose varieties, including the Parkland series.” The rose development program of the Morden Research Station was privatized in 2008 and is now operated by the Canadian Landscape Nursery Association.
  5. Creamsicles were one of my favourite treats when I was a child. Vanilla ice cream on a flat stick with flavoured ice on the outside. My favourite flavour was orange and for a long time I believed there was only one flavour but there are others including blue raspberry, lime, grape, cherry and blueberry. Nevertheless, I still think there should only be orange.
  6. The International Peace Garden was dedicated on July 14, 1932 in front of some 50,000 persons.  A cairn is inscribed with a “promise of peace:”

cairn-peace-garden

“To God in His Glory

We two nations dedicate this garden and pledge ourselves that as long as men shall live we will not take up arms against one another.”

7. “Robin Williams’ Widow Pens Emotional Essay About the Comedian’s Final Days – ABC News – abcn.ws/2di34WH via @ABC

APPENDICES

Appendix A

How do I love thee (Sonnet 43)

How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of Being and ideal Grace.
I love thee to the level of every day’s
Most quiet need, by sun and candlelight.
I love thee freely, as men strive for Right;
I love thee purely, as they turn from Praise.
I love with a passion put to use
In my old griefs, and with my childhood’s faith.
I love thee with a love I seemed to lose
With my lost saints, — I love thee with the breath,
Smiles, tears, of all my life! — and, if God choose,
I shall but love thee better after death.

~Elizabeth Barrette Browning

Appendix B

Here are some more “Rosa” who have captured my eye over the years. They are scattered throughout our garden. I am afraid I will have to wait for a later post to wax poetic about their qualities.

fireglow

Morden Fireglow  Photo: S. Marshall

prairie-joy-img_7160

Prairie Joy  Photo: S. Marshall

blush

Morden Blush  Photo: S. Marshall

belle

Morden Belle  Photo: S. Marshall

centennial

Morden Centennial  Photo:   S. Marshall

img_6135

Morden Amorette  Photo: S.Marshall

REFERENCES AND RESOURCES

Anapol, Deborah, Ph.D. “What Is Love, and What Isn’t?” from Love Without Limits Psychology Today https://www.psychologytoday.com/blog/love-without-limits/201111/what-is-love-and-what-isnt

Australian Broadcasting Corporation http://www.abc.net.au/radionational/programs/earshot/the-three-of-u­­­s-carer-husband-and-lover/7566610

Birth Psychology https://birthpsychology.com/journals/volume-2-issue-4/significance-birth-memories

Canadian Artists Roses http://www.canadianartistsroses.com/en/roses.html

Canadian Geographic http://www.canadiangeographic.com/wildlife-nature/?path=english/species/honeybee

Deeth Williams Wall http://www.dww.com/articles/canadian-designs-morden-%E2%80%9Cparkland%E2%80%9D-roses

Encyclopedia.com http://www.encyclopedia.com/topic/Roy_Campanella.aspx

European Parkinson’s Disease Foundation, “Intimacy, Sex and Sensuality,” updated June 2015. http://www.epda.eu.com/sl/pd-info/living-well/intimacy-sex-and-sensuality/

Gardening.about.com http://gardening.about.com/od/gardenproblems/a/Japanese_Beetle.htm

http://www.greekmythology.com/Myths/Creatures/Sirens/sirens.html

International Peace Garden http://www.peacegarden.com/index.html

Lenbuck, Jonathan, “How does sex differ from intimacy,” World Psychology http://psychcentral.com/blog/archives/2013/04/26/how-does-sex-differ-from-intimacy/

http://lyrics.wikia.co/wiki/Johnny_Darrell:Ruby,_Don’t_Take_Your_Love_To_Town

Manitoba Agriculture Hall of Fame biography of H.H. Marshall http://www.dirtytshirt.net/ahof/ahofmember/marshall-henry-heard/

Mars Bands.com http://www.marsbands.com/2011/10/97-million-and-counting/

Marshall, H. H. Not Because of Beginnings, undated and unpublished manuscript

Michael J. Fox Foundation, FoxFeed Blog, “Swallowing and Parkinson’s Disease,” posted by Michelle Ciucci, November 05, 2013. https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease

Oak Leaf Gardening http://www.oakleafgardening.com/glossary-terms/hermaphrodite-monoecious-dioecious/

Pembina Today http://www.pembinatoday.ca/2010/08/09/famed-rose-program-leaving-morden

Poets.org https://www.poets.org/poetsorg/poet/elizabeth-barrett-browning

Robb, Karl “In sickness and in health: Intimacy and Parkinson’s,” National Parkinson Foundation, http://www.parkinson.org/understanding-parkinsons/newly-diagnosed/intimacy-and-parkinsons

Saban, Cheryl, “Sex, Love, Intimacy: Understanding and Enjoying Your Sexuality,” http://www.care2.com/greenliving/sex-love-intimacy-understanding-and-enjoying-your-sexuality.html

Shapiro, Miton J. The Roy Campanella Story, New York: Messner 1958

Sing Out.org http://singout.org/2016/04/11/ruby-dont-take-your-love-to-town/

The Honey Bee Conservancy http://thehoneybeeconservancy.org/2015/09/13/enemies-to-bees-pesticides-and-hybridized-plants/

The Old Farmers’ Almanac http://www.almanac.com/pest/japanese-beetles

Turtle Mountain Star, Newspaper Archive, Rolla North Dakota, May 2, 2011 http://tur.stparchive.com/Archive/TUR/TUR05022011p009.php

Winnipeg Free Press http://www.winnipegfreepress.com/arts-and-life/life/bloom-off-rose-for-morden-breeding-program-100178814.html

© Stan Marshall (The PD Gardener) 2016

LEARNING TO WALK AGAIN … OR … READING BETWEEN THE LINES

Learning To Walk Again … Or … Reading Between The Lines

Author’s foreword

Readers of this blog know that I have been accused of (and admit to) writing extremely long blog posts with content that takes many twists and turns before finally arriving at some evident, or not so evident, conclusion. Now, I am aware that many people neither like, nor read, lengthy posts and they have articulate reasons for their inaction and inattention.

Equally, I am aware that there is a long and honourable tradition among those who love newspapers (and especially among those who impress upon others that they read their broadsheet newspapers from cover to cover,) to read the headline, a few of the sub-heads and first sentence and then move on to the next article. Naturally, they look at the photos – in a kind of reverse approach to how many men say they read Playboy or Penthouse. 

Today, I acquiesce to this reading style by writing in a form to match i.e., this post will consist of one headline with five sub-heads and respective opening sentences mimicking the content many readers would actually read even if the article were thousands of words longer.  I approach this project fearfully as it is a major departure from my usual style and so many words will have to die in the editing process. Read on to see how this works out.

PERSON WITH PARKINSON’S RENDERED IMMOBILE

The PD Gardener, having walked and cycled almost all of his life was understandably shocked at becoming almost completely immobile i.e., not able to walk without assistance, over a very short time span (4 – 5 days.)

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The PD Gardener doing what he does. Photo: Anne Marshall 2014

Looking for answers (in all the wrong places?) 

“Doctor, Doctor, Mister M.D. Can you tell me what’s ailing me? “ (Endnote 1)

and

Knee bone connected to the thigh bone

Thigh bone connected to the hip bone

Hip bone connected to the back bone (Endnote 2)

The above lyrics sing to me as I struggle to understand the crisis that currently engulfs my body and brain but unfortunately the answer seems locked forever in a “song that never ends.” (Endnote 3)

‘Advance’ and ‘progress’ are positive words, aren’t they?

It is a sobering moment when you realize you are ticking off the progress of your new and/or worsening Parkinson’s symptoms on a mental score card of scientifically established, empirical milestones signifying the intractable advance of Parkinson’s.

Symptoms defy explanation say medical specialists

“Appointments with various physicians, surgeons and other health professionals have left us confused and frustrated.”

The new normal 

Physiotherapy, Pilates and exercise show definite promise to lead the way back to a new normal … but why does the new normal feel like walking on bubble wrap?

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Better take provisions if the journey is 1,000 miles like this first mile.  Photo: The PD Gardener 2015

Next step
“It is often said that ‘a journey of 1,000 miles starts with a single step’ (end note 4) … but the importance of finding the start line and the correct direction should not be underestimated,” the PD Gardener notes sardonically.

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Perhaps the answer is just around the corner and down the hill…. Photo: The PD Gardener, 2015

End Notes

  1. “Good Lovin’ “ lyrics by Rudy Clark and Arthur Resnick. Number hit for The Young Rascals 1966.
  1. “Dem Bones” is a spiritual written by James Weldon Johnson circa 1920.
  1. Origin of “This is the song that never ends” or “This is the song that doesn’t end” is unknown but seems to have been made popular by Shari Lewis and Lamp Chop.
  1. Attributed to Lao Tzu, a contemporary of Confucius and a major figure in Chinese philosophy.

© Stan Marshall (The PD Gardener) 2016

From Aliases and Handles to Sobriquets and Zambonis: Nicknames, Parkinson’s, Gardens and More

From Aliases and Handles to Sobriquets and Zambonis: Nicknames, Parkinson’s, Gardens and More

Caution: This blog post is rated 18A suitable for viewing by persons 18 years of age and older. May contain coarse language and mature themes.

Caveat: As always, this blog is based on real situations with real people. Be aware though that some accounts herein may be altered or embellished for effect and names changed to maintain confidentiality.

Introduction

For some time now and for some odd reason unbeknownst (a word I rarely use) to me, I have been thinking about nicknames. Nicknames are inherently interesting as they often have a humorous side or hold a hidden meaning that lets you in on something private or personal about that individual’s character or upbringing, or perhaps something about their social, economic or cultural class. Anyway, the more I thought about nicknames, the more I wanted to write about nicknames. But the more I wanted to put my thoughts into words the more I realized that I have too many thoughts about nicknames – much like Antonio Salieri’s criticism that Wolfgang Amadeus Mozart’s operas had “too many notes.” Nonsense of course, but it does mean that I have to organize my thoughts in some logical, if not pleasing, manner such that it makes sense. I can’t promise you the masterful equivalent of an opera such as Mozart (or Salieri for that matter) would have produced, but I do promise you a ramble through the world of nicknames – with a few detours of course to explore themes and thoughts about Parkinson’s, gardening and human nature.

I sometimes think nicknames are the tumbleweeds of nomenclature – they are odd things, very common but often misunderstood, rarely cultivated purposefully or hybridized, and they are quite seedy and prolific. There are cases where exuberant fathers bestow a nickname on a son (in particular) at birth in a vain attempt (or desperate hope) that the little boy will emulate, and become, a sports hero, or perhaps a child prodigy in classical music. But mostly nicknames grow up around you, not very pretty, and seemingly unnoticed until loosed to the wind by a voice or pen, freeing dried stalks to stumble, bumble and tumble across the cultural landscape until social relations provides a barrier with the right conditions for a nickname to germinate and stick in the collective mind of any given community.

Before I go much further, I have to say that getting started on a blog about nicknames has been quite fun but surprisingly, it has also presented its challenges. It should be pretty straightforward, right?  Well, wrong. I have lived long enough to know that I shouldn’t proceed to the writing stage of a project without doing some background research so that I don’t make a total fool of myself. [Note: I have long since given up the goal of not making a “fool” of myself but I draw the line at “total fool” which, as a category, encompasses both the completeness of one’s failure and the ‘laughability’ quotient associated with one’s name.]

What exactly is a nickname?

Most definitions of ‘nickname’ encompass the following: an informal, perhaps humourous, name given to a person in addition to his/her real name. OK, so far, so good but hilariously I think that definition is succinct only in the broadest possible way! When additional sharpness is applied to the focus we can see that nicknames often are descriptive of a person’s physical characteristics, personality, skills, talents, or abilities. It may include specificity of geographical location, or at least some hint of it. There may be an event or events (humourous or serious) behind its genesis. The nickname may be widely known and public or it may be held secretively and privately within specific groups or among small numbers of individuals. Nicknames may endure for a lifetime or may exist only fleetingly. Individuals may have more than one nickname over a lifetime and may have more than one nickname at the same time. Some individuals may have had none – but I suspect they are lying.

Superstan IMG_5437

Is this my nickname or my alter ago?  Graphics by CUPE Communications

Most people want to be called by their first name given at birth. Put another way, I believe that most people don’t respond well to someone yelling, “Hey you, get over here! Or, “You, in the black coat, you’re next.” Of course, generally speaking they will also accept to be called by their more officious last names with appropriate modifier e.g., “Ms. Mills, how much is that painting?” Ms., Mrs. and Mr. are commonly used with last names in such cases, and the use of a last name without one of these titles is decidedly less formal e.g., “Mr. Marshall, you are next” as compared to ”Marshall, you are next” unless of course, your first name is Marshall.

As a young lad I sometimes heard the words “I saw that Marshall kid there” when adults were discussing some trouble-making involving children in our small town. Trust me, they were not saying this out of formality and respect. My red hair usually singled me out in any group and I was more likely to hear, “I saw Carrot Top (or Red) there,” establishing my earliest memories of nicknames applied to me. I recall these words one day when I was caught, along with several friends, as we threw stones at the topmost window of a grain elevator. It as a long way up for a 7 or 8 year old but we were rewarded with the sound of tinkling glass, signalling “success.” The whack of my father’s razor strap (I have referred to this dreaded instrument in previous posts) across my behind later that day signaled the “failure” part of my action. Still, I remember feeling some pride (and my father obviously also felt this same sense of pride although misplaced perhaps) as I heard father talking with other fathers about how impressive it was that I had an arm strong enough to reach that window, never mind still have enough velocity on the throw to break the glass at that height. This was an early lesson that there is often bitter with the better, or not all is what it seems, or sometimes compliments come from the craziest of angles.

I also believe that, for the most part, people are happy with their names. I guess we have to be as, ordinarily, we have no control over what we are called. And to change a name requires special dispensation from the state. A name is given to us even before we can speak or think beyond a baby’s thought and is inscribed formally to meet the legal requirements of the responsible political entity within which you live. Informally, we often have a name attributed to us to describe a character trait or some other defining feature. Nicknames fall into this category. At some point(s) a name someone gives to us sticks and is forever contained with quotation marks within our given names, e.g., Herman “Babe” Ruth in baseball or Maurice ”Rocket” Richard in hockey, or Rex “Sexy Rexy” Harrington in Canadian ballet.

Lord knows, communities where I grew up were, and are, populated by people with nicknames like “Skull,” “Boog,” “Weasel,” “Pokey,” “Spud,” “Graser,” “Gruesome,” “Scotty,” “The Old Gardener,” “Jughead” or “Jug,” “Big Bill,” “Jake,” “Red,” “Carrot Top,” “Chuckles McGurk,” “Buster” ”Rubber Boot,” “Aunt ‘Mime,” “Birdie,“ “Helena but my friends call me Helen”and many, many others. Still, when I read local histories and accounts, people in those communities are hardly ever referred to by their nicknames even though many would have responded to those names each and every day. Why is that? Maybe historians are just too formal when they put pencil to paper or when their brain waves are translated into digital pulses. But storytellers shouldn’t be reticent to name nicknames, should they? In fact, it is much better if they aren’t. I am a storyteller first and foremost, and a firsthand observer of the myriad processes of life (that just means I am alive and cogent.) Storytelling is simply my way of packaging life in an understandable and hopefully entertaining form. I don’t have space today to weave in all the humanness contained in the nicknames above, or in the many others referenced elsewhere in this post, but rest assured that these informal monikers have stories to tell and tell them they will in future posts. But for today, here is what I have to offer about nicknames and some of the people who have them.

How nicknames happen

As a teenager I played hockey with a fellow named Neil who was from Wawota, Saskatchewan. Not surprisingly I guess, we called him “Wawota” … that is until he was goofing around one day just before practice while the ice resurfacing machine was finishing up the final flood. Chasing an errant puck he ran smack into its side causing the rest of us to crack up in riotous hoots of uncontrolled laughter, sticks smacking in approval on the ice, while a few of us acted out a series of impromptu on-ice copycat performances of the “move” complete with our best imitation of former Montreal Canadiens’ great broadcaster, Danny Gallivan, doing the play by play, to wit; “Wawota takes the Zamboni into the corner without an iota of trepidation.”

Zamboni IMG_5457

“Zamboni”

Neil was unhurt but in that single moment his nickname changed immediately and spontaneously to “Zamboni,” after the iconic ice-resurfacing machine. I have no recollection as to whether it was an actual brand name Zamboni but Neil’s new nickname was sealed for the remainder of that hockey season. Did the nickname stick? I have no idea as I never saw nor heard from him after that one year. It doesn’t really matter though as this is a perfect example of, not just a nickname, but also one process through which nicknames are assigned. [Of course, the most important outcome of this event was that we were prohibited absolutely from being on the ice at the same time as the Zamboni proving once again that humans, especially teenage boys, need to be protected from themselves.]

What is not a nickname?

Sometimes we can understand a concept or idea better if we look at it in the negative. What is it not? For me, a nickname most definitely is not a shortened form of your given name e.g., Stan is not a nickname for Stanley and Flo is not a nickname for Florence. On the other hand, some short forms are tantalizingly close to being the real deal e.g., Stosh as a nickname for Stan and Flossie as a nickname for Florence. Do they pass a threshold that imbues qualitatively new information? Does it really matter, you ask? Good question. Yes, I think it does matter because nicknames not only identify us to others but we ourselves are influenced in our self-identification and self-perception by our nicknames, especially those that we carry for long periods of our lives. This theory is reinforced by fairly convincing research on the impact of nicknames on learning success among children. I am not going to attempt to detail it here but positive nicknames are associated with positive self-image and success, and negative nicknames are associated more negatively in these aspects.

Let’s return though to the question of Stosh and Flossie. I think that “Stosh” in the North American context is a nickname especially if your given name is not ‘Stanislav’, which locates your ancestry firmly in Eastern Europe. By the same token, Flossie is really just a diminutive of Florence and not a nickname. Feel free to disagree as a few debates in this literature would liven it up a bit.

Stage names or legal name changes are not nicknames surely. In my view these new names replace wholly and completely the original name or are sufficient to disguise or obscure both public and private eyes to the legal name of an individual in order to render their birth name inoperative. The world of entertainment is filled with individuals who are not known by their original legal names e.g. (with birth names in parentheses) Marilyn Munroe (Norma Jean Mortensen,) Cary Grant (Archibald Alexander Leach,) Stevie Wonder (Steveland Judkins,) Anne Rice (Howard Allen O’Brien,) Shania Twain (Eileen Regina Edwards,) Fred Astaire (Frederick Austerlitz,) Ginger Rogers (Virginia Katherine McMath,) Truman Capote (Truman Streckfus Persons,) Judy Garland (Frances Gumm,) Rock Hudson (Leroy Harold Scherer, Jr.,) Meg Ryan (Margaret Mary Emily Anne Hyra,) and Woody Allen (Allen Konigsberg.)

Pet names of affection also, I believe, do not qualify as nicknames either so “Honeybuns,” “Snookum”, “Pumpkin,” “Ma Petite Choux,” “Cookie,” “Biscuit,” “Sweet Pea” and a myriad of others are all on the illegitimate list primarily because their intimate private nature means that only one person ever calls the other by that name. That means that context is everything in pet names of affection. By the same token, mean (nasty or bad) pet names or “terms of endearment” should not be classified as nicknames either, right? Or should they? I understand that Sally Struthers was a rather chubby young girl and family members called her “Packy,” short for “Pachyderm.” Apparently Richard Burton called Elizabeth Taylor “Fats” when they were lovers. I can imagine it did not always go over well with the glamorous star of the silver screen.   Are these nicknames? I guess you could make the case for Struthers, more so than Elizabeth Taylor, as more than one person in Struthers’ family called her by that name. However, I doubt that anyone other than Sir Richard Burton ever called Elizabeth Taylor ‘Fats.’  On the other hand, let’s face it, there will always be some grey areas or areas of confusion where context may be everything. I admit that these types of names and the social interactions that spawn them intrigue me greatly and are worthy of someone’s studious attention.

Nicknames and Parkinson’s

Let’s consider Persons with Parkinson’s (PwP) for a moment. Given that the majority of PwP are diagnosed after the age of 60, if they have lasting nicknames at all, these names are likely to have been forged and well cemented long before diagnosis and are unlikely to stem from the disease itself. For those with early onset Parkinson’s there is a greater possibility that nicknames are connected in some way to Parkinson’s but the probability of that happening is unknown, and pre-existing nicknames are likely to prevail.

Still, it makes some logical sense that some PwP will have nicknames related to this insidious disease i.e., a name that is a variation of Parkinson’s or describes one of its distinctive characteristics to wit “Shaky,” “Parkie,” “Parky,” “Parkyman,” “Parky lady,” “Parky woman.” I follow a friend on Twitter whose husband has Parkinson’s and she is known in the Twitterverse as “Parkywife.” When you think about it, “Parkinson’s” should be a natural root from which a nickname would sprout and a natural hook on which a nickname would hang. But to be quite honest with you, I haven’t come across very many PwP who have such nicknames. The reason may well be that Parkinson’s is such a negative force that we do not much wish to be identified with it, or to be identified by it – and that is what nicknames do.

One problem with pre-existing nicknames for PwP is that they actually may be antithetical, inconsistent or incongruent with a new life with Parkinson’s e.g., it is difficult to reconcile the old “Swifty” MacMillan with his new Parkinson’s gait or “Steady Eddie” Olsen with his soup spilling hand tremor at the dinner table. Although it is not always the case, it is often a sign of disrespect, especially to elders, to assign a negative nickname to someone who is disabled or suffering obviously from a debilitating disease. Would it ever be the case that “Swifty” would have his nickname changed to “Shuffles” or “Steady Eddie” to have his nickname changed to “Sloppy Eddie,” or perhaps, if he is a father he could be “Sloppy Poppy?” In the world I live in, such changes are not likely. Still, depending on the cultural, economic, political, demographic or ideological grouping to which you belong, degrees of affection or meanness can vary considerably and nicknames are susceptible to these forces.

Inappropriate and hurtful nicknames

I have to admit that I survived childhood and my foolhardy teenage years relatively unscathed in all aspects of my being, due more to good fortune than to good sense. Youthful eyes and ears are often ignorant about what they see and hear and when that information is transmitted to a youthful brain, it can sometimes spill out in unfortunate ways. Of course, there are worse nicknames than “Shuffles” or “Sloppy,” for a person with Parkinson’s, but the point is that if it is born of meanness or maliciousness, the PwP should be spared that slight, and accorded respect. At the very least (or should it be most?) you should not be defined in the eyes of others by a disability or illness especially with a derogatory or demeaning nickname. Believe me, you do lose some respect when people learn you have Parkinson’s or watch you struggle with your Parky body and brain. By the way, losing respect for those people in return does not even the matter up but this is a topic for another time. Here’s a little story to illustrate the meanness factor in some nicknames.

When I was a child there was a retired farmer and his wife in my community and they were ‘the salt of the earth’ as the saying goes. To my knowledge they harmed no one, were caring and loving parents and grandparents, were friends to everyone, participated to the betterment of everyone in community, church and social affairs, were unselfish in watching over the children of their neighbours. They deserved to be treated with respect – the kind of respect that is not undermined by behind the back uncharitable comments.  It was determined by persons unknown that the wife was not very good looking and, for as far back as I can reach into my childhood memory, she was called derisively, behind her, her husband’s and her family’s collective backs, by the epithet: “Beaut” or sometimes “Ol’ Beaut.” Please recall that the ignorance of youth is not only a blessing at times, it is also a curse and as children we did not know the meaning of the word “epithet“ and we accepted that “Ol’ Beaut” or “Beaut” was indeed the name we should use when referring to her. The tragedy of course is that we ended up using that nickname in front of her, her husband, her children and her grandchildren who were about my age at the time. The children’s rhyme of “Sticks and stones may break my bones/But names will never hurt me” comes to mind as the first line of defense we used to ward off name-calling. The problem is that, as we discussed earlier, nicknames are more than school yard name-calling, they are identifiers in life i.e., calling someone “scuzzy” is one thing but naming them “Scuzzy” is quite another. In the world of psychological hurt, this difference is meaningful.

But the story does not end there. The farmer and his wife had a daughter who married a fellow from a neighbouring district. For better or for worse as they say, they eked out a living on a small parcel of farmland for many years. But rural life was changing. The small quarter section family farm was giving way to agribusiness. Corporate family farms and Hutterite Colonies began buying up the land of farmers who could not adapt to changing grain, animal and produce markets. While this development was not sudden and stretched over a couple of decades, it was nonetheless inexorable in its march. Many farmers were blind to the inevitable as they viewed their futures through the prisms of whiskey and beer bottle bottoms and in the confines of the ‘still safe from intruding women’ men-only hotels that typified small towns across the prairies. The daughter did her level best to farm the conjugal farmland but it was a losing battle. Her husband succumbed to alcoholism and became more and more a hindrance than a help. Somewhere along this path (I am not sure that it really matters when) he acquired the nickname “Wacker.” I am uncertain as to the genesis of this name but it is the name that we children called him to his face and to others – including in front of the farmer and his wife (the aforementioned “Ol’ Beaut”) whose daughter married “Wacker.” As you can see, layers of insensitivity and subtle meanness can pile up over generations. It wasn’t until years later that I learned his real name. Perhaps, as children, we could be excused from such a continuous display of disrespect, but we cannot be excused if we persist in such behaviour well after we should know better. My words here are not intended as an apologia but rather as a supplicatus that no one, child or adult, should find such malicious nicknaming acceptable

Sometimes the default setting is defective

This brings to mind another occasion when I was embarrassed and betrayed by both my mouth and brain – my brain for not remembering and my mouth for engaging before my brain sent the signal to keep closed. Let’s be clear these failures cannot be placed at the feet of my usual whipping boy, Parkinson’s. If it had been due to Parkinson’s my mouth would have engaged several moments after my brain deemed it appropriate and in fact, the point of the conversation would have moved on long before the mouth uttered a word. No, in this case my mouth was clearly ahead of my brain and my brain was not loaded with the correct data.

In my early 20s I was hanging out one day with a young lad from my hometown at a friend’s place in Winnipeg. I was five or six years older and at that age, five or six years, while not quite a generational gap, is a considerable difference. On top of that, I had not been living at home for a couple of years. Suffice it to say that I barely knew this fellow and knew even less about his life and his likes or dislikes. I really have no recollection as to the primary reason for our being together on this particular day – maybe there was no reason other than the cosmic forces teaching me another life lesson, albeit a minor one – or, come to think about it, maybe not that minor as I remember it these 45 years later like it was yesterday.

Someone came to the door and it was necessary for me to make introductions. I know most of us have been in this situation – we have to introduce someone and we cannot for the life of us remember her/his name. Your mind is a total blank, either scrolling pointlessly and finding no memory of anything resembling a name, or freezing with the cursor stuck, unresponsive to any prodding. Either way, a familiar panic sets in – you are caught out. This day my brain opted for the default – not a good default, but a default nonetheless, put there by a programmer who didn’t fully understand social niceties. Thinking back, it could have worked, it might have worked, but it didn’t work. My brain says to my mouth, “You know his nickname, call him that.”

“… And this is …. um … Gruesome,” I say with some relief. Relief though immediately turns to regret – both are five-letter words but not anywhere close in meaning. I see the young lad’s face fall in disappointment. Clearly this name was not one that he had chosen for himself, and it may well have been bestowed upon him in a mean spirited way. To his credit and showing great maturity, he says calmly, “Actually, It’s Danny, and I am pleased to meet you.”

Shaping your identity

Now, there are worse nicknames than Gruesome, but no matter, the lesson is the same. You should make it a point to know those around you, not just because it is the polite thing to do, but because in that moment of introduction you have a responsibility in a real life process of perception and self-perception, and the formation and perpetuation of identity. In some senses, our self-perception is shaped by how others see us, the looking glass self.   I have no way of knowing for certain but I greatly doubt if Danny was harmed significantly by my inappropriate and awkward introduction and it may well be that I was impacted to a larger degree, given that it has been burned into my memory bank. Still, make no mistake; nicknames are a weird wild card in this process of identity creation.

Social Media

In this era of ‘social media’ (Facebook, Twitter, Instagram, etc.) we are always giving ourselves names that are not the ones we were given at birth. I reference many of these social media names in other sections of this blog. For example, the alter ego writing this blog is “The PD Gardener.” I wager that if not for social media and the practice of selecting one’s own ‘handle,’ no one would have ever in a million years called me “The PD Gardener” as a nickname. In fact, “The PD Gardener” is more so a ‘nom de plume,’ a pen name, pseudonym, or an alias, creating a vague cloak of anonymity without being truly anonymous, than it is a nickname. Pen names of course are not unusual and were often adopted for good reason. Mary Ann Evans wrote as George Eliot to ensure her work was taken seriously and Samuel Langhorne Clemens used Mark Twain as an alias. There is a richness to pen names that needs to be explored but that is not for me, at least not today.

To get a better handle (pun intended) on the development of nicknames, we have to understand that these names and the naming conventions on which they are based are not solely creatures of today’s social media. Rather, they are built on both established traditions and evolving practices in communications and maybe even an indication of the democratization of communications. [Uh, oh I feel like I am in a Sociology of Communications class.]

Shortwave Radio

Shortwave radio surged in importance in the early 1900s, replacing long distance communication using transoceanic cables and long wave transmission. Amateur radio took off as a recreational pastime with each operator having an individual ‘call sign.’ Prior to 1913 only the initials of the radio operator were required for a licence but a series of international protocols since then have evolved into the current standardized call signs. Most call signs in Canada are assigned by Industry Canada and start with the letter “V” followed by various digits indicating the province or territory. You often see these call signs on personalized licence plates of Ham radio operators. While there is some leeway for individuals to select call signs from those available, the signs themselves are formulated under strict government regulation. I am not going to go into detail but if you are interested you can visit the Industry Canada website at http://www.ic.gc.ca/eic/site/smt-gst.nsf/eng/h_sf01709.html

CB Radio (Breaker, Breaker)

If you had a CB radio in the 1950s and 1960s the chances are you heard something like this: “Breaker one-niner, Come in Thermos Bottle” (request for the driver of a chemical tanker to communicate on channel 19) or “Breaker one-niner, Kojak with a Kodak, I-10 Taco Town,” (communicating a warning on channel 19 that there is a radar speed trap on I-10 near San Antonio, Texas.)

This language is a cultural marker of a major development in communications in the mid – 1940s, the widespread use of CB radios especially in the trucking industry. Truckers selected their own “handles” and their ability to tailor their names was unlimited. “Papa Smurf,” “Billy The Kid,” “The Southern Shaker,” ”Bandit,” “Bedroom Bandit,” “Lead Foot Lady of Interstate 80” are legendary ‘handles’ and there are tens of thousands of others from the last 50 years that were popular and recognizable especially in the continental United States, Canada and Mexico. Police were called “Smokeys” and truckers were forever passing on information over their CB radios as to the locations of speed traps or load limit spot checks and how to avoid them. By the way, this function of the CB radio is now largely obsolete with the development of modern interactive GPS apps through which drivers can submit information on speed traps and red light cameras at intersections. In fact, I have such an app on my cell phone.

Summary of Essential Elements of a Nickname

What does this brief history of names in different modes of communication tell us about nicknames? I think there are three specific things to note: (1) ham radio handles are not nicknames but are alphanumeric codes under government regulation signifying province or territory. (2) CB radio ‘handles’ are analogous to nicknames on the one hand in that they are ascribed to an individual in place of a legal name(s) but, on the other hand, they do not meet a key test of a nickname in that they are conferred upon one’s own self and not ascribed by a third party or parties. Even if the ‘handle’ is descriptive of a specific characteristic of the individual it cannot be a true nickname unless conferred by a third party. (3) Handles in social media such as Twitter, Facebook, and email accounts, etc. are not nicknames but are self-ascribed names in an attempt to ensure some anonymity or secretiveness. But, as always, there may be exceptions or gray areas. Let’s follow up on that later shall we?

The number of nicknames is prodigious

As I was kicking around my initial ideas about nicknames, I became obsessed with asking people about nicknames and I began to assemble a list (a very, very long list.) Just think of the number of people with nicknames that you know personally and then add all those who are public and newsworthy figures. The numbers add up very quickly. Sports personalities alone occupy a massive amount of storage space in human memory banks. How many gigabytes or terabytes? No one really knows for certain but historic and current sports figures are immortalized there with names like “Shoeless” Joe Jackson the disgraced outfielder for the infamous scandal plagued 1919 Chicago White Sox (a team interestingly enough with its own nickname, the “Black Sox;”) or Rusty “Le Grand Orange” Staub of the now defunct Montreal Expos (still my favourite baseball team;) Maurice “Rocket” Richard and his younger brother Henri “Pocket Rocket” Richard of the Montreal Canadiens in hockey; Michael “Air” Jordan or Wilt “The Stilt” Chamberlain in basketball; Jack “The Golden Bear” Nicklaus or “Slammin’” Sammy Snead in golf; and Ricardo Alonso “Pancho” Gonzalez or John “The Brat” McEnroe in tennis, to name only a very few.

The sheer volume of nicknames in sports is prodigious – so prodigious in fact that I was sent scrambling to the dictionary to find out just how prodigious prodigious can be. Fittingly, prodigious is elastic and can expand to any size depending on the parameters set. In other words, the number of nicknames for sports personalities is prodigious now but can, and will, expand to an even greater prodigious size in the future. I see no end to it. The capacity for nicknames for athletes is infinitely prodigious.  In fact, as if to underscore the point, some athletes have the dubious honour of having more than one nickname active at any given time. Patrick Kane, star right winger of the Chicago Blackhawks has at least 11 nicknames including: “Kaner,” “Jonny’s boy,” “The Doctor,” “Peekaboo,” “20-Cent,” “Lil’ Peekaboo,” “Peeks,” “Dr. Kane,” “Showtime,” “Pattycakes,” and “He Came He Saw He Kanequered.” Arguably some of these are stretches as legitimate everyday nicknames, but undoubtedly some do meet the strict test I have set for the legitimacy of a nickname – describing character of the individual as accorded and used by a third party.

Nicknames for women in a gendered world

Okay fair enough you say, but are there any limiting parameters? The keen observer will have noticed long before now that most of my examples have been from the male world. I have done this purposefully as I perceive that there are significant gender differences in the world of nicknames. It seems to be true generally that women don’t engage in public rituals to confer a nickname on someone; don’t use nicknames in conversation with others; and they are not favourable towards having their nicknames, should they have one, publicly displayed. Still women do have nicknames. Let’s have a brief look at some names (nick or not) given to some famous women.

In the world of entertainment Jennifer Lopez is “J. Lo,” Katherine Hepburn was also known as “First Lady of Cinema,” “Kate,” and “The Great Kate;” Bette Midler is the “Divine Miss M.” Comedian Mary Walsh is a pioneer in hard-hitting Canadian political comedy and satire to the point where her alter ego ”Marg Delahunty: Warrior Princess” may well be her nickname.

Many female political figures also have nicknames. Time Magazine’s 2015 Person of the Year is German Chancellor, Angela “Mutti” Merkel, who is widely accepted as the most powerful woman in the world and the de facto leader of the European Union. “Mutti” is German for Mommy, Mama, or Mom. Not surprisingly, other strong women in politics have also been accorded significant nicknames e.g., Golda Meir was known as the “Iron Lady of Israeli Politics” long before Margaret Thatcher acquired the “Iron Lady” label in the UK. [Note: I am not passing judgment upon their politics here. I may well do that in future blog posts as I do have some strong views.]

First Ladies in the United States have often had nicknames. “Lady Bird” Johnson used this name allegedly given to her as a baby by a nursemaid. Mary Geneva Eisenhower was nicknamed “Maimie.” Dorothea Madison was called “Dolley” by all but there has been some discussion about whether this was an official name, and Helen Herron Taft was nicknamed “Nellie.” Lucy Webb Hayes, wife of President Rutherford Hayes was widely known as “Lemonade Lucy” as she was a supporter of the Temperance movement and served non-alcoholic drinks at the White House.

In Canada our first and only female Prime Minister, Avril Phædra Douglas Campbell nicknamed herself “Kim” as a teenager. And the nickname stuck perhaps making this an exception to my general rule that a nickname must be accorded by a third party or parties. You would be hard pressed to find anyone in Canada who would be able to identify Kim Campbell correctly by her real name. Famous Canadian political activist and suffragette Nellie “Windy Nellie” McClung lived a short 13 or so miles away from where I grew up and earned her nickname because she was a fiery orator and never at a loss for words. And the “Lady with the Lamp,” Florence Nightingale, forever changed the course of health care setting professional standards and practices for nurses and nursing care.

Nicknames in male Culture

I wager that men have more nicknames than women and are responsible for the act of nicknaming more than women are. Mind you, I have not conducted a scientific meta-analysis of existing peer reviewed and published studies within the esoteric literature of anthroponomastics or anthroponymy (the study of names of human beings including nicknames) although I admit that of all academic endeavours this does seem like a very pleasant diversion from the usual academic stuffiness if one were inclined to be part of the academe.

Nevertheless, I don’t think I am wrong on this one. Males are forever engaged in nicknaming everything and everyone they can. I am not inclined to engage in gratuitous descriptions about the male culture of naming body parts or assigning nicknames based on characteristics of sexual prowess. However, I do not feel it appropriate to skirt this issue without at least making a token foray into male cultural practices by citing two examples from my hockey playing days, for illustrative purposes only.

In this first case, let’s just say that the nickname “Poppycock” is not a reference to a fondness for the famous sweet mixture of candied popcorn, peanuts, pecans, cashews, and chocolate. In fact, I don’t even know if “Poppy” liked sweets but his nickname was more the measure of the man so to speak. Nevertheless, jockstrap size aside, he was short and sturdy and could skate like the wind. He didn’t always know where he was going but he tried to get there quickly. Coach Eddie would quip, “Poppy, you have million dollar legs and a 10 cent head.” There were also suggestions that perhaps the greater part of his hockey brain was housed within the head inside his jock strap rather than the one on his shoulders. [Competitive hockey was not then, nor is now, a game for sensitive souls. I shall blog about this more at a later time.] The Oakland Seals selected Poppy in the amateur draft portion of the 1967 NHL expansion to 12 teams from the original six. It was quite an accomplishment for Poppy. However, he never played in the NHL and kicked around in the minor professional leagues for seven years before hanging them up.

In this second example, the nickname “Job” is not a Biblical reference or a euphemism for a player who was hard working and gets the job done. Not surprisingly, as we are referring to a male cultural environment, it refers to an act of oral sex and the original formulation was “Blow Job” or “BJ,” a variant of this player’s name and initials, and it should come as no surprise that there were several iterations in existence at the same time. I recall his girlfriend being quite puzzled by the nickname and was forever asking him why we called him “Job.” You have to understand that Job was (and probably still is) one of the quietest, unassuming guys I have ever met. The word “nice” just didn’t do justice to his character back then. His shy smile could disarm even the hardest of hearts but on the ice he was a tenacious checker and ruthless in his drive to the net to score. Don’t confuse “quiet and unassuming” with a lack of motivation to succeed and he was a scoring dynamo in his Junior A hockey career. But alas, Job was on the small side at 5’9” and a charitable, even soaking wet, 180 pounds.  Scouts were looking for big and while he had all the tools as a skater, checker, goal scorer, Job was in a tough battle against other expansion draft behemoths of the day. For all but a five game “look see” near the end of his career with the NHL St. Louis Blues in the mid-1970s, he played in the minor leagues.

I hasten to say that there was absolutely nothing that either of these players could have done to avoid being saddled with these monikers. It was more or less spontaneous and as soon as the names hit the dressing room floor, the die was cast and the names stuck – at least within the team for a few seasons. I cannot say whether there was any longevity to the practice but I suspect the nicknames did not have much currency outside of the locker room and died after a short time, unless one or more contemporaries accompanied Job and Poppycock to other playing assignments. Ironically, contemporaries are nasty that way – they bring history with them! I also want to emphasize that, to my knowledge, neither one of them was a “player” in sexual relations with women. Of course, there were many other players whose teenage hormones raged and played the field of available girls to the limit.

While I do feel an almost uncontrollable urge to divulge other nicknames and information from those years of my life, I will leave that for another day as surely the main point to be made here is that male culture produces nicknames formed through the filter of that culture. If that is the dominant culture, then the mass and/or volume of nicknames in that society will reflect that reality. [I am certain there is a PhD thesis here but I am not going to do it.]

Perhaps, it is this dominance of the male culture that sent my family and some friends into paroxysms of laughter at the nickname “Shrimpy,” when I asked them at a family dinner over the Holidays, quite spontaneously and without warning, about nicknames. In fact, “Shrimpy” is a perfectly good example of a nickname and a character in Downton Abby is so named. Nevertheless, it seems that male culture often prevails. I apologize to anyone nicknamed “Shrimpy” for any embarrassment that my family so uncouthly attempts to foist upon him.

The points that need to be underscored from my vantage point are that males are more likely to have a nickname, more likely to address others using a nickname, more likely to attempt to hang a nickname on someone else and more likely to give himself a nickname. I am quite certain that there are equivalencies found in certain elements of female culture, but the probability and the generality of nicknames being more important for men than for women should hold true – according to ‘conventional wisdom’ at least

Critical thinking can make all the difference

Uh, oh, I feel a caveat involving ‘conventional wisdom’ coming on and I must deviate slightly from the main topic in order to explain my thinking and, of course, to absolve myself if I am wrong about any factual statements I make or conclusions I may draw.

The words “conventional wisdom” always remind me of a story told by one of my high school teachers. The message of the story resonated with me at the time and has continued to do so over the last 50 plus years. In fact, when I was teaching at universities or involved in adult education in the community or with workers, I always told this story as a way to underscore the importance of “critical thinking” in almost every aspect of life. Unfortunately, some people have taken “critical thinking” to mean that you criticize or attack other views and opinions to destroy them. My personal experience is that “critical thinking” is a positive activity that clarifies argument and paves the way for progress.

The story goes somewhat like this: A father was telling his daughter that she had things rather easy compared to his own childhood experience. I am sure that we have all heard variations of this story from our own parents and elders. You know, I used to walk six miles to school against the wind, through snow six feet deep, and other such embellishments. The father punctuated this particular assertion by saying, “When I was your age, I had to get up in the morning, do my chores in the barn and then I would go down to the lake, take off my clothes and swim across the lake three times.”

Lake Kawawaymog mist IMG_4543

Early morning pre-swim mist on Lake Kawawaymog   Photo: The PD Gardener 2015

The daughter thought for a few seconds about this latest attempt by her father to impress upon her that she was privileged in her life compared to those in earlier times, and responded very gracefully, “ Father, I am impressed with your work ethic in doing the chores early in the morning. Your parents must have been so grateful for your assistance. And your commitment to exercise by swimming across the lake three times is truly admirable, especially in a time when physical fitness was not as valued or as well organized as it today. You must have been a true role model. But respectfully father, I think it would have been better for you and, probably for everyone else, if you had gone to the lake, taken off your clothes and swum across the lake either two or four times so that you would be back on the same side as your clothes.”

This is a ‘cautionary tale’ and the very simple lesson is that we should never take anything at face value. Always listen carefully to what is being said. Sometimes, we are too quick to accept ideas or things we are told as truth before examining them for factual inadequacies, half – truths and mistakes, or indeed testing the consistency of the internal logic. This caution is for you to be on your toes and to not let me get away with anything. In return I shall do my utmost, as all storytellers do, to portray life events and their meanings accurately while at the same time avoiding detection when I am stretching truth and logic to the limits.

My personal experience with nicknames

Most of us have several nicknames over a lifetime. I had red hair so I was often called “Red” or “Carrot Top” as a child but they didn’t stick with me even into my teen years. “Sidney” was the first nickname I ever had that irritated me. It was bestowed upon me unintentionally in Grade One by Ms. Bennett, a young woman doing her teaching practicum in our small school in Altamont, Manitoba. Undoubtedly the seating chart listed me with my proper first name, Stanley, but when she called upon me, she always said “Sidney” instead of Stanley. This moniker stuck with me for several years, used somewhat derogatorily by a few local children who were not exactly good friends. It’s a funny thing but often nicknames are not short pithy descriptors. Sometimes they evolve into long form substitute names of considerable creativity. Consequently, “Sidney” for some odd reason (by the way, it doesn’t take much of a reason) morphed into “Sidney Slump” and then my status was devalued even more when I became “Sidney Slump from the City Dump.” Today, I am not known as “Sidney” or any of its elongations and thankfully, Sidney “Sid the Kid” Crosby, star center for the Pittsburgh Penguins, has transformed “Sidney” from ignominy into the desirable limelight within my age group.

My wife Anne, the person who knows and understands me best, often (but not always) refers to me by my nom de plume, “The PD Gardener.” As discussed earlier, I believe that a necessary criterion in the definition of a nickname is that it must be ascribed to your person by a third party or parties in place of your birth name. “The PD Gardener” identifies two major elements in my life – Parkinson’s and gardening. It is not the whole of my being it is true, but nicknames never provide a complete identification. In fact, some of them are remarkably devoid of any obvious identifying content e.g., Eldrick “Tiger” Woods while others provide clear clues as to character e.g., Gen. George S. “Ol’ Blood ‘n Guts” Patton. Both serve as nicknames though.

Rebranding T

Sometimes people try to create a nickname because … well just because it is better to have a nickname than not to have one, right? A childhood friend (let’s call him “T”) wanted to be known as “Tiger.” Keep in mind that this was around 1960, well before Eldrick “Tiger” Woods was born (December 30, 1975) and before Dave “Tiger” Williams debuted with the Toronto Maple Leafs in the National Hockey League in 1974. Perhaps, it was a nod to that iconic “Tony the Tiger”(Tastes Grrrreeeaaaattt!) of Kellogg’s Sugar Frosted Flakes fame. [Note that “sugar” was still an acceptable modifier in those days.]  I sometimes think that I learned to spell watching Kellogg’s commercials in the 1950s and 1960s – “K-E-double L – O – Double Good Good – Kellogg’s best to you.”

Whatever … let’s get back to our attempt to give T the nickname “Tiger.” Our strategy was to call T “Tiger” at every opportunity, as often as we could, in as many places as we could until others began calling him “Tiger” as well. My recollection is that the strategy was a complete failure. At first, some of us  were too aggressive and every sentence began and ended with the word “Tiger” and it became an endangered species due to overkill.  Some of us did not follow up on our commitment because we mostly forgot to call him Tiger. Some of us wondered who “Tiger” was when it came up.  We were young kids but we could have been old men!  I now recognize this experience as a clear lesson: just repeating something over and over again, does make it true, nor does it mean that everyone will accept it as “real.” And some people will forget anyway. It seems that many politicians, policy makers, communications gurus, and marketing firms have not learned this lesson. The long and the short of it is that “Tiger” did not stick even for the shortest of times.

Perhaps, part of the problem was that we, at the age of 9 or 10, didn’t understand the complexities of “rebranding.” Clearly, our small rural grade school education was quite deficient in teaching us skills we would need to know later in life. As I think about it, I don’t think people ever saw T as a Tiger and we gave them no reason to think of him as a Tiger. If you are going to change the name (or give someone a name) you have to highlight whatever it is that connects the body to the new name, or give the new name some value.  T did not perceive himself to be a tiger in any particular way e.g., personality. He just liked the name. Others did not make that connection either so they did not reflect that image back to him. If they didn’t think of him as a tiger then it was unlikely that he would adopt a self-perception necessary for the nickname to be viable. And T just did not look enough like Tony the Tiger on TV! In the end, T never really had a nickname that I can remember. Maybe he acquired one later in life.

More nicknames for me? Great….

My given name, Stan, was a name that begged to have “The Man” attached to it. I certainly didn’t mind it as it not only rhymed but it embedded seriousness in my existence, eclipsing the “City Dump” assignation. Even in those days, the concept of “You da Man!” was present in the sense that others thought you were more than capable of getting the job done. I was often called “Stan the Man” by my peers as well as by my parent’s generation especially when playing sports. Two particular professional athletes figured largely in the “Stan the Man” phenomenon. In baseball “Stan the Man” Musial played 22 seasons (1941 – 1963) for the St. Louis Cardinals amassing 3,630 hits, 475 home runs and a stunning .331 batting average.

Stanislav “Stan the Man” Mikita was a second influence. Mikita played his entire illustrious 21-year career with the Chicago Blackhawks, debuting in 1958 and leading the Hawks to a Stanley Cup in 1961. I was 12 years old and a huge Chicago fan living vicariously through my heroes, some with interesting nicknames e.g., Bobby “The Golden Jet” Hull, Stan “The Man” or “Stosh” Mikita, Glen “Mr. Goalie” Hall, Al ”Radar” Arbour, Elmer “Moose” Vasko, Kenny “Whip” Wharram, Pierre “The Bantam Bouncer” Pilote, Eddie “Litz” Litzenberger, Eric “Elbows” Nesterenko, Earl “Spider” Balfour, Doug “Diesel” Mohns.] It was the Hawks’ first Stanley Cup since 1938 (23 years) and the next win wasn’t until 2010 (29 years later.) Mikita played in 1,394 games, scoring 1,467 points including 541 goals. He won the Art Ross trophy as Most Valuable Player four times among many other honours.

Sadly, Mikita was diagnosed with Lewy Body Dementia (LBD) in 2015. Al Arbour, Mikita’s teammate from the 1961 Stanley Cup winning Blackhawks, was diagnosed with Parkinson’s and dementia a few years prior to Mikita’s diagnosis. Medically, if dementia occurs prior to, or within, one year of a diagnosis of Parkinson’s symptoms, then it is classified as LBD. If dementia is diagnosed after one year of a diagnosis of Parkinson’s it is classified as Parkinson’s dementia. Lewy bodies are structurally composed of misfolded alpha – synuclein a protein that forms clumps (Lewy bodies) in the brain and contribute to that person developing Parkinson’s. Research is ongoing and there is no clear scientific explanation yet as to how this happens. Still, it is my understanding that all PwP, when autopsied after death, show evidence of Lewy bodies in their brains..

“Stan the Man” came and went as my nickname a few times over the years but in total it did not stick with me for long. Still, it is humbling to share even briefly this name with such legends as Stan Musial and Stan Mikita, although I would rather that neither Mikita nor myself (nor Al Arbour) had Parkinson’s or Lewy Body Dementia.

Coincidentally, Stan Mikita was born in 1940 in Sokolce, Czechoslovakia to Slovak parents as Stanislav Guoth. Stanislav is a common name for Slovaks, Poles (Stanislaw,) Ukrainians, Russians, Bulgarians and others in Eastern Europe.   In my early 20s, I lived and worked in Winnipeg, which has significant Polish and Ukrainian populations in its north end and I was often called, and answered to, the nickname “Stanislav” or its diminutives “Stach”, “Stosh,” “Stasio” or “Stasiu.” I am not entirely certain how this name game got started but I worked in various places near the north end e.g., the CPR Weston Shops and the Anthes Western Foundry where many Poles and Ukrainians worked. Earlier, I observed that nicknames sometimes outgrow their diminutive stature.   This happened to me when my new nickname was elongated to Stosiu Mendowski – a relatively uncommon family name with Polish roots. In my case, this name is a completely fictional one foisted upon me by my pub-crawling, drinking buddies who were, ironically, largely of Mennonite heritage. I believe that there are people in Winnipeg who never knew my legal name and are convinced that I was, indeed, Stosiu Mendowski. While I did nothing to promote my nickname overtly, neither did I do anything to disabuse anyone of its veracity. It just seemed that under the circumstances of too many beers, too much whiskey and occasionally sketchy company in north end hotels, the idea to stay relatively anonymous was not a bad strategy.

Don’t get me wrong, there were not a lot of really bad things going on, it is just that often times we were riding the edge of misadventure. I don’t say this proudly but just as a statement of fact. I can spare you the effort of Googling it though; you won’t find Stosiu Mendowski in the long list of aliases attributed to “bad guys” in history. Stosiu was not a crook, thief, murderer, forger, bank robber, white-collar criminal, corrupt politician or senator, mobster, gangster, hood or drug lord. Gangs have been around forever but my “Stosiu period” was mostly in the early 1970s well before the musical and cultural phenomenon known as “gangsta’ rap” was unleashed on an impressionable youth in the early to mid-1980s – so let’s not get confused here!

Fingers Finnegan

Speaking of ‘bad guys’ is there any grouping in society that has more colourful nicknames than gangsters? Names like Al “Scarface” Capone; “Bugsy” Malone; Leonard “Needles” Gianolla; Lester “Baby Face Nelson,” Gillis; Stephanie “Queenie” St. Clair; Opal “Mack Truck” Long; “Ma” Barker; Evelyn “Billie” Frechette; Virginia “The Flamingo” or “Queen of the Gangster Molls” Hill; Gertrude “The Bahama Queen” Lythgoe; Rafela “Miconia” or “The Big Female Kitten” D’Alterio; ” Maria “The Boss of Bosses” or “The Godmother” Licciardi; Sandra Ávila “The Queen of the Pacific” Beltrán;” Jemeker “Queen Pin” Thompson to name a few. Note that nickname notoriety is not reserved for men in gangland, as women are infamous in their own right.

My nicknames never really had that gangster quality and I never associated, at least not knowingly, with mobsters or even small time “hoods.” But that does not mean I did not know some unsavoury types.   Think of a less savoury illegal occupation, one that even hoods and gangsters would look down upon as not having any honour, and you come closer to describing some characters who operated on the periphery of the loose social grouping of friends, acquaintances and accidental encounters with whom I hung out. If the words, “petty thief” came to your mind you are a winner! Petty thieves engage in illegal activity that is more serious than a peccadillo but less serious than a felony and is marked by a certain creepiness that offends.

To illustrate, let’s give this petty thief a fitting but fictitious name: “Fingers” sounds about right; “Fingers” Finnegan. I want to say in advance that I did not witness first hand any of the following events or actions and never benefited from the ‘rewards.’ Nevertheless, Fingers relished telling the stories in a boastful manner that highlighted rather than diminished the sliminess of it all, and made us realize what a warped sense of pride he possessed. Don’t ever mistake ‘hubris’ for ‘bravery’ or ‘blind stupid luck’ for ‘intelligence.” [Hmmm … I hope that he has reformed … or is still a petty thief, because if he is a gangster … or a lawyer … he might come looking for me to exact some compensation (physical or fiscal) for libel or defamation of character. I shall trust that statutory limitations accorded by time and forgetfulness is on my side.]

What follows is an enactment of a typical Finnegan petty crime based on my recollection of stories told by Finnegan himself.   [Apologies for the coarse language but, in fact, his expletives were usually more flagrant than I recount here. He was particularly fond of interspersing the word “fuckin’” in between syllables or words such that “the international unions” became ”the fuckin’ inter fuckin’ national fuckin’ unions.”]

Fingers Finnegan bursts through the door into the kitchen of the main floor apartment in an old, possibly heritage but not yet designated, house on Furby Ave in Winnipeg. It is mid- January 1971 and the air rushes in mimicking its parental cold front that was sweeping down from the Yukon through Cold Lake, Alberta and across the prairies in search of Winnipeg’s infamous Portage and Main. With the temperature falling through the floor at minus 25 F (minus 30 C,) a foggy swirl of ice crystals creates a vacuum leaving Fingers gasping for breath – but cradling a plastic grocery bag across his chest, he was breathless for a reason other than it was a stereotypical winter Winnipeg moment, and the fact that he looked truly frozen wearing only a thin windbreaker hardly worthy of the name. His hands were shaky and fingers numb, unprotected as they were by any form of gloves or mitts. It is a strange thing to treat your major “asset,” the reason for your nickname, with such disregard. His feet fared no better as his “patent” vinyl soled slippery city shoes did their level best to turn his feet into ice blocks. He tries to place the grocery bag carefully on the kitchen table but it lands with a frozen “thunk.” Perhaps out of habit, or because of some misconceived notion of the thermal capacity of cold beer, or because he needs to fortify himself after the evening’s excitement, Fingers grabs a beer from a two-four on the kitchen counter, sticks the top in his mouth and pops the cap off with his teeth. [How the heck do they do that without chipping teeth, I’ll never know.]

A TV is playing in the next room and there are voices of other male occupants.

Two guys sitting in the kitchen, simultaneously: “Close the fuckin’ door, you asshole!”

Finnegan: “Fuuuuccccckkk! That’s what I’m telling you, man, the door didn’t close!”

Finnegan: [Yelling at two guys in the other room]: “Hey! Listen up you freaks! This is the best yet!”

Finnegan continues: “You should have seen it man! She was this close to me!” [He indicates a distance of about 3 feet with his arms.]

Finnegan [now holding court with all occupants:] “I was in the back porch when she came out. Shit, I was so fucking lucky to be behind the door! I just held my breath and door stuck open on the floor. If that door had closed behind her, I would have been fuckin’ face to face with her. Christ, I was soooo luuuuccckkkky! She went over to a freezer, got something out and went back into the house pulling the door behind her. I don’t know how she didn’t see me! I could see her eyes as she walked past and I could smell her perfume. I thought I was fuckin’ dead.” [Emphasis on last two words]

[There is short period of silence as the others take a moment to process Finnegan’s words.]

Finnegan: “I could hear her walking around on the squeaky floor in the kitchen, making supper, I guess. I could hear the TV in the front room and a man yell from upstairs for her to help him with his suit. I wasn’t sure if there was anyone else in the house. I didn’t hear anyone else talking though so I was pretty sure they were alone. I was across the street at the corner store when I saw her get off the bus, knock on the front door and this little weasel opens it and lets her in.”

[Fingers pauses as if for effect. In reality he is just taking a swig from his beer, and chowing down on some unidentified left over food]

Finnegan continues: “Then I heard her going up the stairs. I listened but I didn’t hear anyone else. I opened the back door to the kitchen leaving it stuck open on the porch floor. I needed a quick exit. The fuckin’ wind howled outside but the porch was a good windbreak. My car was running in the back lane.”

[Again Fingers pauses to take a bite and wash it down with beer. It seemed like it might have been the only food he had eaten for awhile. He was skinny as a rail with a pasty white complexion that might have been confused with frostbite given the bitter cold … but it wasn’t. His hair was long, stringy and greasy – and getting greasier each time as he ran his food fingers through it to keep it out of his eyes.]    

Finnegan: “So I went in, looked around, not much to steal, so I looked in the ‘fridge, grabbed a grocery bag and got the fuck out of there. I don’t even remember if I closed the door. Holy shit! My adrenaline was pumpin’ as I skated to the back lane and hightailed it to Arlington.” (Fingers made a point of not stealing in his own neighbourhood.)

Other Guy No. 1 (as if stating a fact): “You’re nuts.”

Other Guy No. 2 (suspiciously): Hey, what’re you eating?

Finnegan (proudly): Turkey! Great, eh? Look….

[Finnegan reaches into the bag on the table and pulls out a large China platter laden with turkey pieces. It seems the platter was responsible for the “thunk” when the grocery bag hit the table and it now sits incongruously among greasy Gondola Pizza boxes, Kentucky Fried Chicken buckets, and Golden Dragon Chinese food containers with beer bottles, half-eaten pizza crusts, and chicken bones strewn about on the floor as if a time traveling feast of Henry VIII and his court had just passed.]

Other Guy No. 3: “You know, you really are fuckin’ nuts!”

Finnegan (as if notching his belt signifying a new kill): “Holy geez, first time I ever stole food right out of the kitchen when people were home!”

Other Guy No. 2: “What if that guy chased you?”

Finnegan: “Oh, I wasn’t fuckin’ worried about that weasel once I reached my car. You see, I stole the fuckin’ battery out of the asshole’s car before I went into the house.”

(Finnegan chuckles a short heh, heh,heh and blows imaginary gun smoke from the end of his right index finger)

Finnegan: That’s why they call me “Fingers.”

Several other guys (simultaneously with same intent but slightly differing words:) “Get that fucking guy outta here!”

I am not sure how to end this digression except to say that while the turkey may have been savoury, the crime was far from it – in fact ‘unsavoury’ may well be an integral descriptor in the definition of petty thief.

Rules for nicknames and legal names

“Rules? In a knife fight? No rules.“ This line from Butch Cassidy and the Sundance Kid (nice nicknames, eh?) is delivered by Paul Newman’s larger, stronger opponent just before Newman in return, delivers a swift kick to his tender parts. As we have already discovered, the game of nicknaming seems to have a similar set of rules.

It should be obvious when you think of the wide variety and nicknames that are out there that nicknames are not registered with any regulatory authority ensuring codified provenance and ancestry. However, It seems that naming your children is regulated fairly closely in some jurisdictions but less so in others.   In Ontario Canada where I live the only restrictions on parents seem to be that you cannot give them a symbol e.g., @ or a numeral e.g., 8 as a name. However, before we begin to think that this provides complete free rein to parents, the courts can rule on children’s names “in the best interests of the child” when requested to do so.   Nicknames, informal as they are, are not subject to any restrictions.

They regulate dogs’ names, don’t they?

Naming dogs though is regulated, as is the case for most animals where purebred pedigree is important.  The Canadian Kennel Club specifies that a purebred dog’s registered name can only be up a maximum of 30 letters including spaces. The first name must be the name of the kennel into which the puppy is born and the second name usually has some association with the sire or the dam of the litter. Any further name is at the discretion of the owner. Of course the owners seldom call their dogs by any of these names and give them pet names or “nicknames” in addition to the registered name.

With my ex-wife I once co-owned a Tibetan Terrier which we registered as “Harrowdene’s Shah Chiubacca.” His nickname was “Chiui” although I am quite sure that he was unaware of the cleverness of both his registered name and the spelling of his nickname. Keep in mind this was around the time of the original release of Star Wars. No matter, while he wasn’t a particularly smart dog he did live a good long life (18 years) and demonstrated before he left this earth that he had a soul worthy of respect. On the evening he died, a Sunday as I recall, he was being boarded at a kennel. About 9 pm, Anne suddenly told me to call the kennel. I knew this kennel and said that they would not be open and they did not answer the phone after hours.  So I didn’t phone. The next day we learned that Chiui passed away (peacefully in his sleep) overnight. In order to keep myself sane, I tell myself that there was nothing that could have been done to avoid his death. Anne does seem to have a connection with the animal world that few others have and she is one of very few individuals who could ever receive such a communication. I believe his call out to her was simply a farewell to our collective family for the care and love he received over the years.

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Harrowdene’s Shah Chiubacca “Chiui”   Photo: Stan Marshall

Gardens and nicknames

Gardeners know nicknames (and not just Cassandra “Mrs. Greenthumbs” Danz either) as gardens are filled with both scientific rigour and common names. The binomial system of taxonomy for plants uses one Latin name to indicate the genus of the plant and another to indicate the specific name or epithet. For example, Rudbeckia hirta is the Latin scientific name for Black-eyed Susans, which is the common name (or nickname.) There are many nicknames in the garden as gardening is an activity in which all sorts of folks are engaged. You don’t need to know Latin to garden and it is a good thing too because learning the formal Latin scientific names is a challenge for most of us I think – I can remember some but draw a total blank on others. Of course learning the scientific names is a great mental exercise in the ongoing efforts of Parkies and the elderly in general to ward off dementia. (I hate Sudoku and crosswords.) Be careful though, as with humans, there are often many different common names for the same plant and as we shall see, different names for virtual triplets.

Turtleheads (Chelone glabra) are also known as balmony, bitter herb, codhead, fish mouth, shellflower, snakehead, snake mouth, and turtle bloom. It is part of the Figwort family (Scrophulariacea.) In Greek mythology, there was a nymph named Chelone who insulted the gods; in punishment, she was turned into a turtle. The flowers of this plant are said to look like the heads of turtles. Glabra is from the Latin word meaning smooth because of the lack of hairs or texture on the stems and leaves. (Source: US Department of Agriculture Forest Service)

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Turtleheads in boggy part of our garden  Photo: The PD Gardener

Monkshood (Aconitine napellus) of the family Ranunculaceae has many alternate common names including Aconite, Napel, Blue Aconite, Blue Rocket, Casque-de-Jupiter (Cap of Jupiter), Goatsbane, Wolfsbane, Helm, Hex, Odins Hut, Ra-dug-gam’dzim-pa (Tibetan), Thora Quasi Phtora Interitus (Latin, ‘doom’), Trollhat (Nordic.) Source: www.entheology.com. All parts of the Monkshood plant, especially the roots, are poisonous and gloves are advised when handling it. Fortunately, it has a very bitter taste (or so I am told as, not surprisingly, I have never tried it) that alerts one to not ingest it. Monkshood prefers woodland conditions and it grows reasonably well in deep shade under a very old apple tree at the foot of our gardens. It blooms in late fall and we can count on it being in flower on Hallowe’en – a suitably scary time for a scary poisonous plant.

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Monkshood: Handle with Extreme Caution  Photo: The PD Gardener

Orange Daylily (Hemerocallis fulva,) is from the family Xanthorrhoeaceae and is also known widely as Tiger Daylily, Ditch Lily, July Lily, Tawny Daylily, Railroad Daylily, Roadside Daylily, Outhouse Daylily, or Wash House Daylily among others. As they are so common in so many settings that are not formally cultivated, these lilies masquerade as native plants but they are originally from Asia and introduced into North America in the early 1900s. You can always spot an old farmyard long after the house and barn are gone by the colourful patches of “Tiger Daylilies,” a patch of rhubarb, and some lilac shrubs – three organic monuments to the bygone era of homesteading. As you undoubtedly have already noticed, many of their common names are indicative of that history. Today, many consider these Ditch Lilies to be invasive plants threatening the native environment. They do spread quickly through root rhizomes and it is imperative to maintain their boundaries regularly. However, the term invasive is one that is open to interpretation. For an interesting challenge to the dominant view see Ken Thompson, Where Do Camels Belong? Why invasive species aren’t all bad, Greystone Books, 2014.

The Ditch Lilies in our garden serve to remind us of our youth and the flower and vegetable gardens tended by farming wives (primarily) and working folk in cities. In Ontario, they bloom reliably on July 1 and on a daily basis until the end of the month. In some vain attempt to break free of that heritage we do have several hybridized day lilies adding an entirely different dimension to daily daylily life blooming later in the summer. It may be heresy to some but our gardens are a melange of native, non-native, hybridized, and, yes, invasive, varieties of many different plants.

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Common Ditch Lilies or July Lilies   Photo: The PD Gardener

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Fancy Hybrid Daylily 1  Photo: The PD Gardener 2015

 

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Fancy Hybrid Daylily 2  Photo: The PD Gardener 2015

 

 

 

 

 

 

 

Brown-eyed Susans (Rudbeckia triloba,) Black-eyed Susans (Rudbeckia hirta,) and (huh?) Brown-eyed Susans (Rudbeckia fulgida var. Goldstrum) are of the family asteraceae (aster.) These are three of the some 25 species of Rudbeckia in North America. Most people are not going to see many differences in these three plants and they refer to them indiscriminately as Brown-eyed or Black-eyed Susans. Of course, if they were human, triplets might object to being called the identical nickname, wouldn’t they? And if we anthropomorphize (wicked word eh?) a little more, I prefer to call them Brown – eyed Susans as Black – eyed Susans sounds kind of abusive.

Why should we pay attention to differences? Well for one thing, it does assist in designing the type of “look” or “image” you want your garden to project, and the way your garden reproduces itself. I confess that I don’t usually pay much attention to differences in the Rudbeckia as I am mostly concerned with assisting the garden to grow according to its natural plan, intervening as little as possible but intervening nonetheless to ensure that the garden is not choked out with other noxious plants. In other words, I am not trying to recreate an identical garden year after year as much as I am trying to permit natural tendencies in a controlled way. Undoubtedly, this statement will drive the native plant purists to distraction and will endlessly irritate the formal horticulturists because gardens of this type may appear a little “unkempt,” but it is an accurate description of how I garden.

Rudbeckia hirta is commonly called Black-eyed Susan or sometimes gloriosa daisy and is usually grown as an annual, biennial or short-live perennial. It is relatively short (24 inches) and some varieties may be hardy to zone 3 but often it is grown as an annual in northern climes. It is a common native wildflower in many U.S. states. A coarse, hairy, almost weedy plant, it has daisy-like flowers with bright yellow to orange-yellow rays and a dark chocolate-brown center.

Rudbeckia fulgida var. sullivantii ‘Goldsturm’ was the 1999 Perennial Plant of the Year growing to a height of 18 to 30 inches – a bit shorter than the species Rudbeckia fulgida that grows to 36 inches. It is also commonly called “Brown-eyed Susan” or sometimes “Orange Coneflower” even though its petals are usually yellow and is hardy down to zone 3.

Rudbeckia triloba (Brown-eyed Susans) have a more profuse bloom of smaller on e- two inch flowers and usually have fewer rays per flower as the basal leaves are often three leaflets, and sometimes each of the three also divided (hence the Latin triloba.) Their centres may begin as black and fade to brown. It is a short-lived perennial and hardy to zone 4 and possibly zone 3 under the right growing conditions. .

As I said earlier, I prefer to call them Brown-eyed Susans because Black-eyed Susans seems rather violent, but let’s not get carried away with garden political correctness. Brown-eyed or Black-eyed is good enough for most people. Their golden yellow petals arrayed around a dark centre can lift the darkest of spirits when viewed en masse from a short distance. They are prolific self-seeders so we always have several clumps migrating around the garden from year to year.

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Brown-eyed and Black-eyed Susans migrate around our garden  Photo: The PD Gardener

 

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Rubeckia fulgida “Goldstrumen masse     Photo: The PD Gardener

Common Mullein (Verbascum thapsus)  is considered to be a weed by most people and would meet a hasty demise at its first sighting in most urban and suburban perennial or vegetable gardens. It is usually found in waste spaces, ditches, roadsides, along railroad rights of way, in gravel soil near, but not too near, swamps and sloughs. It is considered to be a pioneer plant, one of the first to pop up in regeneration after a forest fire for example. It likes direct sunlight and abhors shade. It can grow up to 10 feet tall but in our garden, which has a fair bit of shade, it grows only to 3 – 6 feet at best. Most people think it is an ugly weed with its large furry leaves and a tall spike for a flower head. But unlike Lupins, the small, pretty, yellow florets open only five or six at a time for one day at a time, giving it a decidedly unfinished look, or a look that promises to be something spectacular, but never is.

The mullein is native to most continents but is non-native and considered a weed in North America, New Zealand and Australia . Nevertheless, it is used in a variety of herbal medicines, particularly as an astringent and emollient.  It is categorized as invasive, competing with native plants, but it is far from aggressive. It likes open scrabble gravel soil so it is rarely competition for tended gardens that are far too luxurious and crowded. Still, this biennial will pop up from time to time if the seeds, which require winter dormancy to germinate, find adequate infertile conditions.

The mullein has a wide variety of quite descriptive nicknames (over 40 in English alone by some accounts) including: “cowboy toilet paper,” “Indian rag weed”, “bullicks lungwort”, “Adams-rod”, “hare’s-beard”, “ice-leaf” “woolly mullein”, “velvet mullein”, “blanket mullein”, “beggar’s blanket”, “Moses’ blanket”, “poor man’s blanket”, “Our Lady’s blanket”, “old man’s blanket”, “feltwort” and “flannel”.

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The Common Mullein shows up uninvited once in a while  Photo:  The PD Gardener 2013

Whatever you call it, I don’t mind if one or two show up for a garden party at our place. They arrive uninvited to be sure but they are interesting company and make for great conversation as they mingle with other more high brow guests.   Keep in mind that for the mullein to grow at all in your garden depends on you recognizing the seedlings so that they are not weeded out in any rush to spring clean your garden of weeds. Resist the “tsk, tsk” of the neighbourhood garden purist who sprays and pulls his/her garden and lawn to within an inch of its life. As a matter of principle and in solidarity with all native and non-native plants, I stand in opposition to fanatical or harsh over weeding. Some good friends are lost in that process.

Are sobriquets bouquets of flowers?

I just can’t end this section on gardens without talking about “sobriquets” which just means a descriptive name or epithet – a nickname in other words. However, for the life of me I can’t get it out of my mind that a sobriquet should be a bouquet of flowers for non-drinkers.  Perhaps, “Lemonade Lucy” would have several “sobriquets” on the tables when she served tea at the White House.

However, as I begin this fanciful digression, it occurs to me that “sobriety” has two slightly different but complementary meanings i.e., not being drunk and seriousness. After a cursory review and due consideration of the many features of this particular blog post, I have determined that there are two flowering plants (Azalea and tulips) ideally suited to represent my (incorrect) interpretation:

1) In Victorian times the Azalea was a symbol of temperance.  In fact, even today some flower shops carry an arrangement specifically named “Symbol of Sobriety” and I have seen Alcoholics Anonymous Chapter pins incorporate flowers into their distinctive circle and triangle design. There are many other modern day meanings for the Azalea but I couldn’t let the history re: struggles for sobriety and the connection to the Temperance Movement pass unnoticed in my search for my version of a “sobriquet.”

2) The tulip seems to have been adopted as a symbol of sobriety in its second meaning of seriousness as well. Not surprisingly, it has a connection to the Netherlands (What tulip doesn’t?) but, unexpectedly, it also is central to understanding the “seriousness.”

Tulips w Cherry Blossoms IMG_1647

Tulips with Cherry Blossoms Photo: The PD Gardener

In 1636 – 1637 “tulipmania” struck the Netherlands. It is widely described as the world’s first financial bubble and subsequent crash as speculators drove tulip bulb contract prices (really a futures market) to incredible heights only to have the markets crash sinking the economy into crisis. I won’t go into details but until that point the Dutch economy was booming and Amsterdam was one of the richest cities in the world. Most analyses are that Dutch society, built on a religious and cultural foundation of Calvinism, reverted to its religious roots to recover from this Golden Age of extravagance and the shock of the tulip crash. In other words, it returned to ‘societal sobriety.’  [There are alternate analyses that suggest that the crisis was not really “mania” driven but a rational response to the government’s intended intervention in the economy where firm contracts would be cancelled, converting them into “options” instead. I leave it to the economists out there to explore or elucidate further.]

This diversion of course isn’t really a diversion. It is merely taking an alternate “scenic route” leading us back to Parkinson’s disease.  In 1981, J.W.S. Van der Wereld, a Dutch horticulturist with Parkinson’s disease, developed a distinctive tulip, red with white-feathered edges on the petals. Van der Wereld named his prized cultivar, the ‘Doctor James Parkinson’ tulip, (Tulipa Doctor James Parkinson) to honour the man who first described this medical condition and to honour the International Year of the Disabled. The Parkinson Disease Foundation (PDF) has been using the tulip as a symbol since the early 1980s. In April 2005 the red tulip was launched as the Worldwide Symbol of Parkinson’s disease at the 9th World Parkinson’s Disease Day Conference in Luxembourg. Parkinson Society Canada, its provincial and regional partners, and many other Parkinson’s organizations worldwide have adopted this prized tulip and it has become their most recognizable symbol whether depicted in realist or stylized form.

PD Symbol IMG_5431

Stylized tulip of Parkinson Canada Pin

Red tulips are normally associated with true love and they have that image for me as well – even though my lover prefers burnt orange. But I also recognize the red with white-feathered petals of the Doctor James Parkinson Tulip as a symbol promoting awareness of PD, the seriousness of PD and the hope we hold for a cure and/or a major medical breakthrough such that PwP have a vastly improved quality of life.

Parkinson’s disease is a very sobering disease and I believe that other than the Grim Reaper himself, or the Devil if you believe in the Devil as my Baptist friend does, it is the most formidable opponent I will face in my lifetime. [I realize that there are other horrific diseases such as ALS, Huntington’s and terminal cancers. I am not in any way diminishing their severity here.]  Parkinson’s is a petty thief much like “Fingers” Finnegan who creeps unknown into your kitchen, bathroom, living room and bedroom, stealing your life in small measures that are not, in and of themselves, felony crimes. Before you realize what is happening, it has become firmly entrenched in your brain, nerves and muscles and will shape the remaining years of your life. Our mission is to delay the petty thief, using all the tools we have at our disposal.  Parkinson’s rarely commits the final act of murder, preferring instead to aid and abet Death in our final days, but is guilty as an accomplice nonetheless.

It is fitting then that my mis-labelled, mis-interpreted, and mal-defined “sobriquet’ should be a bouquet of Doctor James Parkinson roses and a bouquet of Azaleas, together symbolizing a clear head and a serious determination of will to survive.

Conclusion

I have had great fun and amusement romping through fields of nicknames and re-living (for me) a few stories that might be called tangential but I don’t believe they were ever dead ends. Given the rather strict parameters I have placed on the definition of nickname, I regrettably must accept that “The PD Gardener” is not truly a nickname for me as it has not been legitimately ascribed by a third party or parties. But perhaps, with a little more time and more use by others, it will evolve into one. To tell the truth, Anne has called me “Mr. Marshall,” for years. I don’t object to this name as it really is my name with a formal title, but in my mind, “Mr. Marshall” is reserved for my paternal grandfather as my grandmother, for as long as I knew her, referred to him as “Mr. Marshall.”

I hasten to point out that there is no admission of defeat or submission to Parkinson’s in my desired identification as “The PD Gardener.” Parkinson’s does not own me. “The PD Gardener” merely describes my principle characteristics at this time of my life and, wouldn’t you agree, it is infinitely more accurate and appropriate as a nickname than “Sidney Slump from the City Dump?”

Post Script

Arrrrggghh! The nicknames just keep on coming – from everywhere, including drug lords, wrestlers from my youth, cricket players and besieged Canadian Senators: – JoaquinEl Chapo” Guzmán (drug lord,) “Haystacks” Calhoun (wrestling,) “Whipper Billy” Watson (wrestling,) Maurice “Mad Dog” Vachon (wrestling,) Lawrence “Larry” Shreve aka “Abdullah the Butcher”(wrestling,) Bret “Hitman” Hart (wrestling,) Shoaib “Rawalpindi Express” Akhtar (cricket,) Edward “Lumpy” Stevens (cricket,) Michael “Pup” Clarke (cricket.)   In Canada, Senator Mike Duffy is on trial for 31 charges of fraud, breach of trust, bribery, and frauds on the government related to inappropriate Senate expenses. The larger than life Senator is often called, somewhat derisively, “Puffy Duffy” by ordinary Canadians although the media hardly ever refers to him that way.

Is there enough storage in my brain to process nicknames ad infinitum? We will need to break psychological barriers to the human understanding of the meaning of “elasticity” in order to fully contemplate the “prodigious” volume of nicknames being created and disseminated each day in a wired and WiFi world.  I am certain I will return to this fertile ground in future blogs.

In the meantime, have look at some of my favourite nicknames in the appendices below

Appendix A: Nicknames (?) and Parkinson’s

These are some names that are commonly used by the Parkinson community in social media. Most are collective nouns, aliases, or nom de plume,

  1. “Parkie” – General nickname for someone with Parkinson’s
  2. “Shaking palsy” – a nickname for Parkinson’s
  3. PWP or PwP – Person with Parkinson’s
    PLwP –Person Living with Parkinson’s
    PD’er – Person with Parkinson’s disease
    YOPI – Young Onset Parkinson’s Individual
    Parkinson’s Peeps
    YOPD – Young Onset Parkinson’s disease
    Parkie D’s
  4. “Perky Parkie” @perkyparkie Alison Smith, Twitter and blogger
  5. “Parky wife” @parkinsonsdis Twitter
  6. “Parkinson’s Humour” @YumaBev Twitter, blogger, author
  7. “The PD Gardener” @pdgardener Twitter, blogger

Appendix B: A Few Lists of my All Time Favourite Nicknames

I have created four lists of my personal favourite nicknames: male and female for sports and non-sports personalities. I have limited myself to ten names in each list. This restriction makes it an extremely difficult exercise. Try it sometime.

My Top 10 All Time Favourite Sports Nicknames (Male)

  1. George Alexander ”Twinkletoes” Selkirk (baseball)
  2. Colin “Mrs. Doubtfire” Montgomery (golf)
  3. Andrew “#Hamburglar” Hammond (hockey)
  4. “Chucky Three Sticks” Charles Howell III (golf)
  5. Willie “Hit’em where they ain’t” Keeler (baseball)
  6. Darryl “Chocolate Thunder” Dawkins (basketball)
  7. Max “Dipsy Doodle Dandy” Bentley (hockey)
  8. Bernard “The Executioner” Hopkins (boxing)
  9. Harold “Red” “The Galloping Ghost” Grange (football)
  10. Marvin “The Human Eraser” Webster (basketball)

My Top 10 All Time Favourite Sports Nicknames (Female)

  1. Michelle “The Big Wiesy” Wie (golf)
  2. Steffi “Fräulein Forehand” Graf (Tennis)
  3. Hayley “Chicken” Wickenheiser – altered from original “Chickenheiser” (hockey)
  4. Paula “The Pink Panther” Creamer (golf)
  5. “Can’t miss Swiss” Martina Hingis (Tennis)
  6. Anastasia “Nastia” Liukin (gymnastics)
  7. Chris “Ice Maiden” Evert (Tennis)
  8. Cristiane “Cyborg” Justino Venancio (mixed martial arts)
  9. Jeanette “The Black Widow” Lee (billiards)
  10. Mildred “Babe” Didrikson Zaharias (basketball, baseball, golf, track & field)

My Top 10 All Time Favourite Non-Sports Nicknames (Male)

  1. Charles “The Great Asparagus” De Gaulle
  2. Manfred “The Red Baron,” von Richthofen
  3. George S. “Ol’ Blood and Guts” Patton
  4. Admiral Harold M. “Beauty” Martin USN
  5. Lester “Baby Face Nelson” Gillis
  6. Erwin “The Desert Fox” Rommel
  7. Calvin “Snoop Doggy Dog” Broadus,
  8. David “The Tiny Perfect Mayor” Crombie
  9. “Brangelina” Brad Pitt and Angelina Jolie
  10. Abraham “Honest Abe” Lincoln

My Top 10 All Time favourite Non-Sports Nicknames (female)

  1. Opal “Mack Truck” Long
  2. “Lemonade Lucy” Webb Hayes, wife of President Rutherford Hayes.
  3. “Windy Nellie” McClung
  4. Iva Toguri “Tokyo Rose” D’Aquino
  5. Florence “Lady with the Lamp,” Nightingale
  6. Melanie “Scary Spice” Brown
  7. Margaret “The Iron Lady” Thatcher
  8. Virginia “The Flamingo” or “Queen of the Gangster Molls” Hill
  9. Rafela “Miconia” or “The Big Female Kitten” D’Alterio
  10. Emma “Red Emma” Goldman

© Stan Marshall (The PD Gardener)

 

 

Death, Souls, Parkinson’s and other Strangeness

Death, Souls, Parkinson’s and other Strangeness

Preface

I am writing about death today, which means that this post veers wildly and widely across a spectrum of fact, truth, myth, and mystery. What follows is a grab bag of stories and memories along with some scientific and philosophical musings about the very thing we do not want to remember, think about, or recount. Throw in some scientific “facts” and a few life experiences about Parkinson’s and you have a complexity that cannot be dealt with as concisely as you might think. In other words, this is a long piece so make yourself some tea or coffee, a salad and/or a sandwich and set aside some time for a journey that may prove to be funny, enlightening, frustrating or all three. I guarantee it will at least make you think.

Can Parkies talk about death? 

Some time ago my friend, Anne, asked me what I was thinking about covering next in my blog. I hesitated before answering because I was thinking of writing about “death” and usually there is no way for a Person with Parkinson’s (PwP) to broach this topic without at least some inferences being drawn. But I hesitated for another reason as well. Anne’s husband Tom Jokinen wrote a very informative and wonderfully humorous book on the funeral industry from a perspective as inside as it can get without it actually coming from inside the casket, the crematorium or the ‘great beyond.’ The title Curtains pretty much says it all, capturing finality but leaving room for a curtain call and perhaps…. an encore?

In any case, part of my hesitation to reveal my thoughts was out of respect for both Anne and Tom who must have had a torrid and intimate relationship with death and dying from the moment Curtains was conceived until it was launched. They had undoubtedly explored death to depths that I cannot fathom. I do not want to convey the impression that I understand death. I don’t and I am concerned that my ignorance may diminish the very concept of death for readers who are far more erudite on the matter than I am. That said, I press on unbidden.

The first thing I need to do is to get one major inference out of the way. We have all thought about death. It is part of life and we have all had death in our lives. It can be painful, physically and emotionally. It can also be a release, or a relief, when death is a vehicle that transports pain and suffering to another plane. It is often assumed that PwP, wracked with the pain and psychological battering that a progressively neurodegenerative disease places on our bodies and psyches, wish to hasten the arrival of death. Ergo any mention of “death,” at any time after diagnosis, sends our loved ones and friends scurrying to find counsellors (psychologists and psychiatrists primarily) to divert us from death’s door. They are always on the alert for early warning signs. We PwP have to love them for their concern, but sometimes “a good cigar is just a good cigar” or “it is what it is.” Discussing death does not mean we crave it. And PwP can be as serious, or as flippant, about death as anyone else. We have that right.

In fact, Scottish comedian and entertainer Billy Connelly recently commented about his own diagnosis of Parkinson’s and the diagnosis and subsequent suicide of his good friend Robin Williams by saying that he is not afraid of dying, “It has never crossed my mind that I am gonna die. What is dying anyway? It is just a light going out?”

What I find most interesting about Connelly’s comment is not that he is unafraid of death but that there is a question mark at the end of the sentence about dying being like a light going out. Well, is it? Is it just like a light going out? And does this imply that it has gone out forever or is it like electricity and can be switched on again? Before I started writing this piece, I was adamant that extinguishing a Life Force is permanent and a Life Force cannot be re-established in its previous material form. When you are dead, you are dead. Seems self-evident. Unless of course, you are a young lad playing “cowboys and Indians” [yes, political incorrectness ran rampant in my youth] or the more politically correct “cops and robbers.” You could be shot dead many times and always experience a miraculous re-birth in your previous body and identity by counting to 20 (or ten if you weren’t old enough to count to 20) or by shouting loudly for all to hear, “you only grazed me!” And the game continued.

It is likely not the best idea in the world to use popular culture as a philosophical foundation to carry you through life, but let’s assume for a crazy minute that you wanted to do that. In 1986 The Smiths song, There is a Light that Never Goes Out, describes being broadsided by a double decker bus as “such a heavenly way to die” and that if a ten-ton truck killed us both then, “To die by your side / Well the pleasure, the privilege is mine” culminating with the final line repeating “There is a light and it never goes out.” So, is there a light or not a light? Does it go out or does it stay on?

But let’s back up a few years before The Smiths to the mid-1960s when the notion of an integral relationship between death and birth was reinforced intentionally or unintentionally by Laura Nyro’s lyrics to And When I Die originally released in 1966 by Peter, Paul and Mary and recorded by Nyro herself in 1967.   But it was the cover by Blood, Sweat and Tears that made this song wildly popular when they rode it to Number 2 in the charts in 1969. The opening line professed that “I’m not scared of dying” as preparatory reassurance that all will be well, and the chorus provided comfort that the human race would survive in perpetuity albeit with no population growth. We are replaced when we die although not necessarily in identical materiality or spirituality.

And when I die, and when I’m gone
There’ll be, one child born
In this world
To carry on, to carry on

What more could we ask for?  As it turns out, we have already asked for a lot more. It seems that humans have spent inordinate amounts of time and energy trying to understand and explain life and death, and what it means to us. In popular culture there are literally tens of thousands of songs, books, plays, and poems written about death. The one song that hits the top of most lists about death is ‘(Don’t Fear) The Reaper’ by Blue Oyster Cult 1976. If we include television programs and social media then the total is pushed nearly to the limits of human comprehension. It is almost too terrifying to think about systematically analyzing death, as it seems to be massively overexposed, overrated and …. misunderstood.

But this brings us back to my friend Anne’s question of what I would write about in this blog and my tentative answer, “death.”   Because Anne is a thoughtful and generous person and because of the nature of Tom’s book, not to mention the fact that they were moving and needed to ditch cargo, she offered to drop off a box of books on death and dying. True to her word she arrived a week or so later with a selection of titles I could hardly wait to peruse. Mortality, Immortality and Other Life Strategies instantly made me laugh out loud and was included on my list of books to take to the cottage. I have to confess though that it is quite stodgy and academic. Searching for immortality doesn’t seem to be half as much fun as it could be. I am resisting for the moment the temptation to write a parody.

A book of scripts for the Marx Brothers movies: Monkey Business, Duck Soup, and A Day at the Races, probably met the death criterion on the basis of the introductory note by Ken French which addresses comedy and suicide in Woody Allan as well as the likelihood that the famous Marx Brothers provided comic relief for those suffering the ravages of the Great Depression. Or perhaps it is in the grouping because of this exchange between Mrs. Teasdale and Firefly (Groucho) in Duck Soup:

Firefly: Not that I care but where is your husband?

Mrs. Teasdale: (mournful) Why, he’s dead.

Firefly: I’ll bet he’s just using that as an excuse.

Mrs. Teasdale: (proudly) I was with him to the very end.

Firefly: Huh, no wonder he passed away.

Mrs. Teasdale: (dramatically) I held him in my arms and kissed him.

Firefly: Oh, I see. Then it was murder. Will you marry me? Did he leave you any money? Answer the second question first.

So, maybe there are some funny bits in there but I have never been a huge fan of the Marx Brothers and there was not much here to make me want to not forget the Marx Brothers. [Interesting double negative, eh?]

Cottage Reading 2015 Photo: S. Marshall

Cottage Reading 2015 Photo: S. Marshall

Perhaps, I am just not in the mood for slapstick comedy because as I write this, we are mourning the death of Sharon Pickle, a member of my Parkinson’s support group. She passed away suddenly from natural causes, shocking us all, because she was fanatical about looking after herself. She was a wonderful role model who has left us far too soon leaving a huge hole in many communities. Among other things, she was a yogi, a cook, a daycare activist, an outdoors adventurer and a person living with Parkinson’s. I am sure her husband and family are devastated.

It is at times like this when it is so very difficult to have a conversation about life and death that is free of caveats and assurances as to one’s own sanity. But that does not constitute sufficient reason to stay silent. In fact, I feel it would be dishonest if I did not write about death in a blog about living with Parkinson’s disease. I am certain that there are very few PwP who have not considered death in a slightly different light post-diagnosis than they did pre-diagnosis. Doctor assisted death/suicide is now part of our lexicon and when spoken aloud draws nods of affirmation from those in the know. At some point I will blog more specifically about this topic but today is not the day.

Death is creepy generally speaking and we come to it (or it comes to us) in various ways, usually unplanned and unexpected. The fact is that over 70 percent of the dopamine producing neurons in the area of my brain known as the substantia nigra had already died by the time I was diagnosed with Parkinson’s disease. The death of these cells happened quietly and without fanfare until my brain began to send mysterious and wrong signals to muscles, and muscles began to send wrong responses back to the brain. Whoa! What’s happening to me? I thought: I must be getting old as my gait slowed to the point where a lady in her 70s with a knee brace passed me on my daily walk; I couldn’t smell my favourite foods or detect when the gas burner on the stove was on but not lit [dangerous!]; I had incontinence and constipation issues; I started to shuffle, stumble and lurch when I walked; I felt kind of low more often; I had trouble with simple movements like rolling over in bed;  I developed weird muscle cramps where my toes want to curl up or down, or move independently of any conscious direction from my brain; and pain and peripheral neuropathy became, and remain, my constant companion. There are many other symptoms but the list is already too long and I am sure you get the idea. To be direct: loss of dopamine leads to muscle movement disorders with accompanying non-motor complications.

The fact is that cells in our body are dying all the time but they are replaced constantly for the most part. Not so in the substantia nigra. Death of dopamine producing neurons means we must ply the remaining cells with ever-greater amounts of the gold standard treatment, levodopa that is converted into dopamine in the brain. There are other treatments such as deep brain stimulation (DBS) in which electrodes inserted into the brain provide stimuli to block abnormal nerve signals which cause tremor and other Parkinson’s symptoms;  the use of “agonists” such as Azilect taken orally or Rotigotine delivered through a skin patch to bypass the blood brain barrier more effectively – both fool the brain into thinking it has more dopamine than it really has and mitigate fluctuations in wearing off; and a new delivery system called the duodopa pump where dopamine in the form of a gel is pumped directly into the duodenum minimizing “off” periods and dyskinesia. Others are in development.  Each of these treatments attempts to mitigate or minimize symptoms of Parkinson’s. None of the treatments are cures or can reverse the progressive degeneration of Parkinson’s. More on this sad fact later.

An important thing to remember is that “death,” is most often thought of, if not actually defined, in the negative i.e., as not life, and for the purposes of the general population, this absence of life is easy to detect mostly because the individual has been officially pronounced as dead by a medical practitioner who is trained to detect and measure signs of life. Mistakes in identifying death in animals are unusual but mistakes in declaring death for the plant kingdom are far more common than for humans. Conversely, we don’t tend to think of “life” as being “not death.” Life has its own positive signs aside from being not dead. I tend to think that life and death are not strictly polar opposites.

Of course this begs the question: if death is to exist, must it be defined in the positive, as something other than “not life?” And, if that is the case, does it reside in the same space life resided e.g., does death just replace life in the human body? Is death “evil?” And finally, is there a Soul? I want to know the answers to these questions but I don’t think that my life’s experiences have provided an adequate foundation to understand death. But, just as there are no two PwP who are identical in their manifestations of Parkinson’s, there are no two individuals who have identical experiences with death. Death is a very broad concept and can range from death of brain cells as in Parkinson’s to the death of pets and plants to the death of friends and loved ones – all multiplied by some factor that captures the combinations and permutations of all living interactions? Crazy? Maybe, but let me explain what probably lights up in a scan of my brain when I think about death.

Do young boys know about death, dying and such things?

As a boy playing in and around the small prairie village of Altamont, Manitoba, I was no stranger to suffering, dying and death. Many a spider lost one or more legs to the merciless and senseless torture of small hands, before being put to death (mercifully?) by a well-placed brick, a solid stomp from a worn no name brand running shoe (black canvas uppers, white rubber soles – no Air Jordans, Nike, Reebok, or New Balance,) or the intense insect frying heat generated by a magnifying glass made of a broken shard from the bottom of an old Coke bottle. Rodents – mostly mice or gophers – were dispatched with somewhat more difficulty in traps designed to maim at the very least and optimally to kill. Delivering the final blow to a gopher might involve such skill and technical expertise as dropping a stone on its head such that one or both of its eyes bugged out of the sockets. Images like this stay with one for a lifetime.

Oh man, am I ever digging myself in deep here! Now I am placing myself in with a class of merciless killers – boys, but killers nonetheless. Whatever happened to those words we so joyfully sang in Sunday school?

All things bright and beautiful,

All creatures’ great and small.

All things wise and wonderful,

The Lord God made them all.

All Things Bright and Beautiful, 1884 lyrics by Cecil Frances Alexander

And what is a small boy to do when he follows the direction of a respected adult elder to perform a mercy killing of a deformed newborn in the litter of a captive pet animal where that newborn was unlikely to survive; that it would not be able to fend for itself to live, or defend itself from predators to avoid death; that it would likely face bullying and harassment, maybe even resulting in death from its own litter mates or a parent? At least that is what we are told.

Experience with death and dying is an intensely private and personal matter of great complexity. Unpacking it is akin to unraveling a very bad snarl in a fishing line caused by a careless cast of the lure without placing the soft but controlling pressure of the thumb on the reel to keep the line from forming a chaotic mess of nylon as it issued forth. Freeing the gnarl might take a seeming eternity and might not be possible without the aid of a trusty jackknife to cut and discard the offending section and then reattach the remainder of the line to the leader, solving the immediate problem but shortening the line by some immeasurable length. The ease with which the knot could be cast aside and the speed at which the task at hand (fishing) could be resumed was so tempting that the remedy requiring patience was seldom followed, especially by young boys.

So, life and death for young boys was often gnarly, knotted and tangled in a mess of confusing hormones and societal expectations. With little or no concern for consequences, we careened carelessly through nature, wreaking havoc on sub-species. It seemed intuitive that the tangle we created could always be excised and set adrift to float outside our orbit, but doing so also limited our ability to deal with each successive instance.

We most often associate death with the elderly dying. As such, it is something sad, maybe tragic, but part of the natural life cycle. It is when it is unexpected or is encompassed in a disguised form that death frightens us. And we learn to be frightened very early in life – it is germane to our survival. But what frightened me most as a child was that dead was dead. We would be no more. I couldn’t have cared less about a possible afterlife in Hell with the Devil or an afterlife of bliss in Heaven. Maybe my Sunday School and religious upbringing failed me, or I failed it more likely, but what I feared was deadness. Truth be told, as children we didn’t know what it would be like to be dead, and we don’t know that now. What we did know was that we didn’t want to be dead, nor do I now.

Am I making any headway in understanding anything here? Read on if you are inclined to wander through the foggy reaches of my past and the pockmarked surfaces of my memory banks, and find out.

The Old Fisherman

The first time I ever saw a dead human body was at the funeral of Mr. Chas. (Charlie) Simpson. To me he was an old man (in his seventies), a retired farmer who lived with his wife, Edna (fondly known as “Simmie” to all the neighbourhood children,) across the back lane and at the end of the block. He was a kindly gentleman and he was my fishing buddy in a kind of Jake and the Kid sort of way when I was a lad of seven or eight. On many weekend mornings in the Spring (fishing was always better in the Spring before the waters of the Pembina River turned murky, dark and dank in the summer heat and the Jackfish – Northern Pike to the pretentious – turned sluggish and lurked listlessly in a few of the deeper recesses of the river, their flesh soft and unappetizing,) I would rise at dawn to make my way across the lane, lunch bucket filled with peanut butter and banana sandwiches, with my dad’s tackle box and my very own rod and reel at the ready to catch “our limit.” We never ever did catch our limit (8) but there were several occasions when I out fished the old fisherman and returned home proudly to display the catch to my mother. Mother was always suitably effusive in her praise but I knew that secretly she hoped I would be shut out so that she would not have to see the fish, much less filet them. As it turned out, my father always filleted any fish I caught until I was old enough, and skilled enough, to handle the sharp filet knife. The photo below shows me with my first big fish caught off the bridge on Hwy 34 south of the “Four Corners” near Swan Lake.  Ever since this time, I am amused by how many people fish from bridges that have signs that say “Do Not Fish From Bridge.” Even my father, ever mindful of the law, ignored the sign because if the best place to fish is off the bridge then you should fish off the bridge!

First Big Fish Photo: R.B. (Bert) Marshall circa 1957

First Big Fish Photo: R.B. (Bert) Marshall circa 1957

As I said, Charlie Simpson’s  body was the first dead human body I ever saw. I was about nine or ten years old when my father told me that Charlie had died or “passed away,” as is the common euphemism for this event. I don’t remember exactly how it transpired but I recall going to the United Church on the day of Charlie’s funeral with my friend Wayne and slipping quietly into the back pew just before the service began. I believe I was there with my father’s permission if not my mother’s. She seemed a bit more concerned about the effect my attendance might have on me. At any rate, Wayne and I strained our necks to peer through the many mourners who crowded the small church, to glimpse the body of my fishing buddy. It was open casket. No one had warned me about this part of the service. I could just barely see the tip of Charlie’s nose that, from the perspective of a small boy, I had always thought to be uncommonly large. And I could sort of make out his fleshy lips – lips I most often saw caressing his pipe, carefully filled and tamped by tobacco stained fingers, lit with a wooden Eddy match sparked to life under his thumbnail, and capped with an old aluminum lid from a pepper shaker. I witnessed this lighting up ceremony hundreds of times.

However, I had never been witness to funereal rituals. My friend and I did not know what do as the service drew to an end. Without a word between us, in one spontaneous movement we decided to make a run for it out the entrance door. But some kindly and well meaning pallbearer (a farmer no doubt) cut us off in the aisle as he would a pair of skittish calves, arms extended out and down from his sides, hat in one hand, shooing us up the aisle toward Charlie, pasty as he was, in the open casket. One secret of herding cattle you need to know is that they head for daylight, and the only daylight to be seen was past the casket and to the right where a side door left the church. We galloped across in front of Charlie’s casket as fast as our hooves could carry us to the safety of the outdoors, but not before I stole one last, fast look at the fisherman. I saw him, or at least I saw his likeness, his visage … but I knew he wasn’t there. His Spirit, his Soul, his Being, his Life Force, whatever you want to call it, had departed the day he rose from the supper meal he shared with “Simmie”, went to relax on his sofa and passed away peacefully, leaving me only with memories of pleasant times on the river bank, the strike of a fish on a well-cast lure, and the dipping of the bobbin as a fish nibbled the bait. These experiences and occasional contextual remembrances were triggered mostly by the unlikely combination of peanut butter and banana sandwiches eaten with fishy fingers adorned with shiny fish scales.

The Hitchhiker

Fast-forward a few years to a time when I was hitchhiking from Winnipeg to Altamont. [Note: I do not condone hitchhiking now but that is what we did in those days.] In any case, one sunny morning, I was thumbing on Highway 3 just south of Carman, Manitoba, near the cemetery where my maternal grandparents now rest. A hearse from Doyle’s Funeral Chapel was approaching and I thought, what the heck, I will just leave my thumb out. The black Cadillac limousine passed without any indication that it might stop and I turned to trudge on my way. But after a devilishly longish moment, it slowed, coasted without braking to a halt on the gravel shoulder of the highway, and waited patiently for me to catch up.

I opened the front passenger door to speak to the driver dressed in his black formal funeral attire with white shirt and black tie. He let me know that he never stops for hitchhikers but he is making an exception just this one time. I was not sure whether to be encouraged by this declaration as I was at that point reconsidering this unexpected invitation for a ride in a hearse.

He asked me where I was going. I said “Altamont,” and he said, “Well son, this is your lucky day. That’s where I am heading.” It seemed like a good fit so I jumped into the front passenger seat. We exchanged a few pleasantries and I looked a little nervously over my left shoulder and asked if there was anyone riding with us in the back. He replied somewhat mischievously, “Would it make any difference if there was?” Never one to miss an opportunity to be a smart ass, I quipped, “Well, it seems I am riding in the front seat, so it doesn’t much matter to me then, does it?” At that point the driver knew he had me hook, line and sinker to use a well-worn fishing cliché and like any good fisherman, he proceeded to set the hook firmly. “Yes, there is someone riding along with us today” and he let several miles of road pass in silence. As we made the turn onto Highway 23 at Jordan, I couldn’t stand it any longer and I quietly inquired, “so who is in the back?”

“Mrs. Simpson,” he replied. Now, let it be known that Mrs. Simpson was her own person and has her own legacy in our village. My sisters knew her as “Simmie,” the neighbourhood babysitter, surrogate grandmother, baker of delicious cookies and other good things, and I knew her as the wife and then widow of my aforementioned fishing buddy, Charlie.

I sat in silence, slowly contemplating the magnitude of what was occurring. On her last ride, Simmie seemingly had just compelled the driver of this hearse, on official business with corpse in the casket, to ignore company policy and offer a seat to an unidentified, bearded and shaggy haired hitchhiker in the hearse transporting her remains to their shared village where a funeral service would be performed before her final Peace. I maybe should have felt privileged and honoured that “Simmie” was charitable enough to assist me in this small way on my travels, but, at the time, it was mostly a little creepy, and as young men often do, I later made light of the situation publicly rather than fess up to my ignorance on matters relating to life and death – or maybe more appropriately to matters relating to the Soul.

We were now past the small village of Rosebank and coming up upon the cemetery just east of Miami, Manitoba where the remains of my paternal grandparents lay in rest. There is a stone in that plot with my name on it – to commemorate the life of my uncle, my namesake, who was killed in World War II at Ortona, Italy where his life is also commemorated. I have to admit that even to this day it is a little unnerving to see a grave marker with your name on it, especially with such a close connection.

My name sliding under the earth into the grave Photo: R. Marshall 2015

That’s my name sliding into the grave   Photo: R. Marshall 2015

The driver again broke the silence by asking, “Did you know Mrs. Simpson well? As I said, I have never before stopped for anyone when I was carrying the dearly departed.”

I had no immediate answer. I was floating in a reverie created by the smooth ride of the Cadillac and my thoughts of an uncle I would never know – an uncle whose memory and death never failed to bring tears to my father’s eyes.

After another fairly long silence we were passing the corner to Deerwood near where Charlie and Simmie farmed for many years and (would you believe it?) actually rented the farm of my great grandfather Henry Moorhouse from 1928-1932. I summoned the wherewithal to break the reverie of the sumptuous ride to venture, “Yes, I knew her quite well as she lived across the back lane from us when I was a young lad.”

The last few miles flew by and we turned down the road east of Altamont taking us close to the peaceful cemetery where the ashes of my own parents now rest, before turning west to stop in front of the United Church. Just as I looked over to thank our driver (Simmie’s and mine) for the lift, he nodded, smiled and remarked wryly, “I wager that Mrs. Simpson was keeping an eye out for you.”   To this day, I am not sure whether the driver knew that her husband Charlie had one glass eye  – so they probably both had an eye out for me.

[OK, at this point I give you permission to groan at my most inept, and inappropriate, attempt to incorporate humour as a literary device to bring this anecdote to a conclusion … but it is not quite closed.]

I never saw the funeral driver again as pallbearers and friends of the Simpson family met the hearse at the church and I was distracted by those looking askance at me as I exited from the Cadillac’s passenger door and beat a hasty retreat along Main Street, disappearing into the Post Office building owned by my father. I don’t recall the conversation with my dad about this strange occurrence but I do know that I never went to the funeral service for Simmie even though it was happening at that very moment just a few short steps to the west. It was not out of disrespect that I did not attend, but I already had my moment with Simmie even though I was pretty certain she wasn’t in that shell of a body anyway. It was vacant. She had departed. But I did feel that her Soul was somewhere. But where was that?

Yeah, I know this sounds really hokey, but hokey or not, Mr. and Mrs. Chas. Simpson are playing a central role in my attempt to understand the ‘dead is dead’ philosophy of death. At the moment they are not supporting it.

Where is that Bert Guy Anyway?

I witnessed my own father’s death, his very last breath if that is how we measure end of life. My sister Colleen, my mother and I sat with dad at his hospital bed in Humboldt, Saskatchewan, as his breathing grew more and more shallow. My sister reports that earlier that day a little (and I mean “little” literally) nun appeared as if out of nowhere and sat with dad, rosary in her hands, softly singing, praying. It was calming and peaceful. Almost as quickly as she appeared the little nun disappeared and dad’s breathing continued on its soft downward spiral of shallowness. My sister, a former nurse, remarked that it would not be long. Hospital staff respected our privacy and my mother took one last opportunity to run her hands lovingly over the entirety of my father’s face, cheeks sunken but whiskered, and kissed his non-responsive lips as she whispered that she would next see him with her parents, Bill and Minnie, and her brother Jim (oh, how my mother longed to see her brother in an afterlife.) My parents had not shown a great deal of open, public affection for each other in their lifetimes, and I felt a bit like a voyeur as I witnessed this one last moment of intimacy, a moment that touched me greatly.

With my sister and mother on the left hand side of the bed and me at the foot, my father continued his slow demise until finally his mouth opened and with one last great final gulp of air, his breathing stopped. We spent a brief moment in silence before my sister took my mother to a grieving lounge close by. I stayed behind for a moment, and turned to say what I hoped would be some last, meaningful and profound words to my father. The few words I managed to utter disappeared, incomplete and without meaning, as if into a void, as I realized that I was alone in that hospital room, very alone, spookily alone, alone alone. He was gone. An empty vessel lay where his living body had been. Passed away. Passed on. Crossed over. Died. Dead. Departed. Popped off. Six feet under. Bought the farm. Checked out. Carried out feet first. Carried out in a pine box. Finito. Croaked. Pushing up daisies. Bit the dust. Kicked the bucket. No longer with us. Out of his misery. In a better place. A goner. Toes up. Tits up. Gone to his just reward. Gone to heaven. Deader than a door nail. Met his maker. Joined the heavenly choir. Shuffled off this mortal coil. And the list goes on. Death expressed through euphemism most certainly seems final. Perhaps, ‘dead is dead’ after all?

Years later I made some comment about my father, Bert, to my mother who was by then in the early stages of dementia, and she replied, “Where is that Bert guy anyway? I haven’t seen him around for awhile.” I knew exactly what she meant.

Trying to Google that 'Bert guy' on ipad. Photo: A. Marshall

Trying to Google that ‘Bert guy’ on ipad. Photo: A. Marshall

The Sentencing

In my early 20s I was living in a student’s Cooperative in a building called The Madison at 210 Evanson St. in Winnipeg. I shared a room with my friend R.W. in what was the old nurses’ residence of the Grace Hospital. Technically, you were supposed to be a student to be entitled to a room and meals – breakfast (make your own), bag lunch (pack your own), and a dinner/supper meal, usually hot and prepared by a cook. Food supplies were provided and left in the basement kitchen area for consumption in the adjoining dining hall. The cooperative was managed and operated by a collective, the structure of which I was not terribly interested in at the time and am only mildly interested in today. The occupancy rate was typically less than one hundred percent so accommodation was usually available to non-students.

The whole political and social environment was … well … quirky to say the least. A mixture of students with left leaning values; students who were still searching for any kind of values and changed them every hour, day or week; students who were students and wanted to be left alone; non-students both employed and unemployed with a similar wide range of values and political orientations; and draft dodgers escaping the reach of Uncle Sam’s army and bringing with them a strange ideological mix of pacifism, democracy, individualism and hippy peace loving into the collective environment of the cooperative.

Meetings of the membership, board and residents were eye openers for me – a young rube from the country. I had never witnessed such process and antics in my life to that point. However, regrettably I have since then, many times! The politics of cooperatives is not always compatible with Marxism, Marxist – Leninism, communism, socialism, social democracy, anarchism or humanitarianism to name but a few political and ideological factions. One thing was clear though: a major point of contention was the ongoing battle to keep the kitchen clean with dishes washed after meals. A weekly rota was posted delineating which floors had responsibilities for each day. The rota was regularly ignored and duties performed haphazardly, if at all. The kitchen area was often filthy but fell just short of rotten food and cockroaches thanks to the diligence of some residents who covered up for laggards by doing the work themselves. It was a classic individual solution to a collective problem, saving the collective from itself.

Let’s be clear here though. I am not saying cooperatives or collectives cannot work. I believe they do but it is not my intent here to convince you of their many merits. What I am saying though is that diversity of political values and lack of commitment to a common vision of a collective social order, coupled with questionable cleanliness habits of youth and others who never matured, spells trouble.

The resulting fireworks at residents’ meetings featured politics as a smokescreen behind which to hide deficiencies and inefficiencies. It was worthy of charging admission. What would start out as an argument about who was supposed to clean up the kitchen and dining area after breakfast often ended up as an argument about who was the most progressive politically. Many a discussion was shut down by such scintillating and scathing commentary as: “I was a socialist before your asshole was the size of a shirt button…. You asshole!” – playing the age/experience card if not the “big assholes are always better than small assholes” card.

Permit me an aside here: Don’t you think that digression is both my best and worst trait? I apologize but the segue into death in the cooperative is not easy as no death actually occurred within the Cooperative at the time that I lived there. However, astute readers will know that The Madison fell on harder times approximately 40 years later in 2007 when police shot and killed a resident who had fatally stabbed another resident and in 2008 a methamphetamine lab was discovered in one of the suites in the building. By that time it seems that a not-for-profit corporation providing low-cost room and board to seniors and people with mental and physical disabilities was running the complex. It had clearly fallen far from the more principled intentions of the Student’s Cooperative.

In my day, the most serious infraction at The Madison was that eggs and pancakes were left to adhere like glue to the frying pans and pots in the kitchen. Hardly enough aggravation to warrant a death sentence. Nevertheless, it was a death sentence indeed that provided the real connection to death – one that has never left me. Let me explain.

R.W. and I developed a routine during times when we were other than gainfully employed. My political, sociological and philosophical education was greatly enhanced during these times and I learned to deliver acerbic, barbed retorts in hot, beery debates in a variety of settings, legitimate and otherwise. Being a little short of cash we scouted out several breweries that provided one or two free beers to patrons who attended their “hospitality” lounges. Labatts, Molson, Carling, O’Keefe, and Pelessier were the major breweries vying for market share at the time. Readers will recognize that much rationalization in the corporate beer sector has taken place since then, and today craft breweries, non-existent in those days except as illegal private home made brew, have created their own market niche. Just a fraction of a percentage point difference in market share translated into $ millions then, just as it does today, and breweries tangled head to head for precious brand loyalty. Corporate representatives descended into many local “beer parlours” buying rounds for the house on crowded, but not too crowded, Saturday afternoons. The representatives were really only supposed to buy one or two rounds but occasionally they became embedded in the clientele along with a local or NHL old-timer hockey hero. In those cases beer flowed freely and frequently and patrons in that particular hotel, or at particular tables in that particular hotel, felt that they had hit the mother lode. Hospitality lounges at the site of the brewery were one of the other marketing ploys. The rooms were open to those who were taking tours of the brewery, businessmen (and they were all men) who had contracts with the brewery, long time employees and retirees who met to have a few draught and shoot the shit with their buddies, and to those of us in the general public who happened to uncover this little secret – a couple of free beers if you played your cards right.

But R.W. and I were never motivated solely by the promise of free beer. No, we were much more civic minded. We would head down to City Hall to catch magistrate’s court at 10:00 a.m. with it’s plethora of parking tickets, moving traffic violations, small claims, offences against property and persons, lawsuits of various types, and liquor and drugs offences. We became friendly with bailiffs so that we would know which magistrates were most likely to hear the most interesting cases, and which magistrate’s docket was not to be missed that morning. Justices Ian Dubienski, Isaac Rice, and Harold Gyles were all on the bench and each had his own way of dealing with not only the alleged offenders but also the lawyers who appeared in their courtrooms. For those who dared to represent themselves without benefit of legal counsel the first lesson usually was that Magistrates were to be addressed as “Your Worship” and not “Your Honour.” Remember this was long before the days when television discovered (some would say created) the attraction of watching reality court shows such as The People’s Court with Judge Joseph Wapner or Judge Judy with Judy Sheindlin. In the Winnipeg courtroom, live and in colour, Judges Dubienski, Gyles and Rice were our judicial role models and they never failed to provide added value to our education.

So it was that I was introduced to the protocols, traditions, and sometimes but not often, the niceties of criminal court, without being charged myself, appearing before the Magistrate in clothes stinking of booze and puke from the previous night. I had the privilege of observing class, race and gender at work in the courtroom pretty much as a ‘fly on the wall’ rather than an active participant, which I am ashamed to admit I could very well have been on many occasions. If I may be permitted a short (and probably bad) allegory to explain, sometimes the difference between being a ‘fly’ and being a ‘cockroach’ is infinitesimally small and separated only by good fortune rather than genetics or good bloodlines. I often reflect upon those courtroom dynamics as I try to understand how institutional and societal inequalities and discrimination are solidified and perpetuated, or sometimes overturned or nudged on a new course. The seemingly ad hoc, informal and somewhat voyeuristic approach R. W. and I took to entertainment shaped and heightened my awareness of social, political and economic relationships in a way that no amount of ‘book – learning’ could ever have done.

But back to free beer – look, while free beer may not have been the prime motivation for our self-directed program of education, it did play a close secondary role – and I recall that the Carling’s Brewery hospitality lounge was often open by 11:30 a.m. and was located at Redwood and Main not far from the City Courts building.  If magistrate’s court did not quench our thirst in our quest to understand the nexus of social, economic and political affairs, we hightailed it to Carling’s to plan the afternoon itinerary over a cold draught. We discussed various legal matters from the morning and reviewed any intelligence we had on the afternoon cases at the Court of Queen’s Bench on Broadway Avenue starting at 1:30 p.m. The Court of Queen’s Bench adjudicates the most serious of criminal and civil cases along with family court matters. Needless to say we weren’t ever permitted to observe family court matters and I don’t recall us ever wanting to witness those proceedings. We did however want to observe murder trials and other crimes of fraud or high finance and we scrutinized newspapers and court listings in the Law Courts building to finalize our plan.

If there was nothing of interest at Court of Queen’s Bench we knew there were hot political issues that would make Question Period at the Legislature, virtually across the street from Court of Queen’s Bench on Broadway a more exciting option at 2:00 p.m. In that case we were more likely to seek sustenance at the Labatt’s Brewery right across from the Legislature at Osborne and Broadway.  The newly elected Ed Schreyer New Democratic Party government guaranteed lively questions from the opposition to this first social democratic government in Manitoba. We followed provincial politics very closely, studying the machinations of the media and the parties alike. R.W. was ravenous in his desire to study and understand provincial politics. His working class and union background was the perfect breeding ground for political action and analysis. His influence on me in these matters was considerable and I respect and value his views and analysis to this day.

And the socio-political terrain of the time was rich (some would say rife) with politicking, maneuverings, and dissension. The NDP won a victory that was not well accepted by many Manitobans and the divide in the population seemed to run approximately on a diagonal line from the southeast corner of the province through the City of Winnipeg to the northwest corner with everything north of this line voting NDP and everything south voting Conservative or Liberal. But there was no unanimity within the NDP either. Some supporters felt the party was too conservative under Schreyer and that the working class agenda for change had been abandoned. I suppose this group felt their skepticism was warranted when Schreyer accepted to be Canada’s Governor General in 1978 upon the recommendation of then Prime Minister Pierre Elliot Trudeau. The Winnipeg-based socialist magazine Canadian Dimension published a cartoon that had Schreyer saying, “The working class can kiss my ass; I’ve got the Governor General’s job at last.” He later became Canadian High Commissioner to Australia before finishing his rather strange career with an electoral loss for the NDP in the 2006 federal election.

On the other side of the political spectrum within the NDP, Mel Watkins, James Laxer and Robert Laxer led the radical Waffle faction formed in 1969. The only member of this faction to actually hold a seat in the legislature, Cy Gonick, was a strong vocal supporter inside and outside of the Legislature. The normal flow of NDP policy conventions was disrupted as the Waffle caucused, effectively in some cases and not so effectively in others, to have policies calling for an independent socialist Canada adopted. I witnessed this as a delegate of the Fort Rouge NDP to the Convention in 1970 or thereabouts but I was too naïve (still the country bumpkin) to know what was afoot and what was at stake. However, I still recall with awe the moment federal NDP Leader Tommy Douglas entered the ballroom of the Fort Garry Hotel to address delegates. It was electric, and his speech was delivered extemporaneously with such passion that I could not understand how most of the electorate could not understand.

A few short years later, labour leaders led the charge to disband the Waffle and it ceased to exist in any meaningful way beyond 1974. I raise these matters not to argue or analyze either the contributions or the negative impacts of such a nationalist movement with the NDP but to point out that it was a turbulent time within the politics of the left in Manitoba. It gave R.W. and me much to digest, talk about and argue over. I have recently reconnected with R.W. after many years and I suspect we will pick up some of this discussion once again. In retrospect, it is no wonder that we sought out entertainment and enhanced our education in the gallery of the Manitoba legislature watching a political movement seeking its path in unchartered waters. [I will return to other personal stories about my ‘small p’ political life in a future post.]

I guess I had better get back to The Madison and why it has such a prominent place in both my recollection of events involving death and in my attempt to understand what happens to a person’s Soul when one dies.

Consider this: On June 26, 1970 (my 21st birthday coincidentally) a police officer, Detective Ron Houston, was killed near the Stradbrook Hotel in Winnipeg. It was a hotel I frequented often with my friends, as the aforementioned Students’ Cooperative in The Madison was not far away at 210 Evanson St. A certain Thomas (Tom) Shand was also a resident of The Madison and after several days as a fugitive Shand was arrested for the alleged stabbing and murder of Det. Ron Houston. [It was later revealed that a scuffle ensued in the initial attempt to apprehend Shand and Det. Houston’s revolver came free and was used by Shand to fire a shot at Det. Houston. It is not clear that the shot actually hit Det. Houston and the likely cause of death was the stab wounds from the knife that Shand carried to slit screens during his night time forays through residential neighbourhoods.] In the days immediately prior to his arrest, Shand sought refuge with friends who did not live at The Madison and after consultation with a lawyer he was convinced to turn himself in to the RCMP to avoid immediate, rough, retaliatory justice at the hands of the City of Winnipeg Police.

So Tom Shand was known to us – slightly – but known nonetheless, and of course, as soon as the news of his arrest broke, the hallways of The Madison were buzzing with chatter about who knew what? What had happened? And how close were you to Tom Shand? Social and gossip credibility value increased exponentially with frequency and intensity of contact with the alleged killer. One young woman took the prize, as she had been on a date with Shand a short time earlier. To paraphrase her when she learned the news, “Holy fuck, he was in my room!” How close they really were was never fully revealed and it matters not. What does matter is that these events lead to one specific moment in time that is indelibly etched upon my mind.

The death of Det. Houston, tragic though that was, is not the death that is germane to this story. Tom Shand, it was alleged, was skulking that night between two apartment buildings when he was approached by Det. Houston investigating a peeping Tom (yes, no kidding) who was also a rapist. Shand, in his defence, claimed that he had been involved in a poker game that had ended badly and he thought Det, Houston was one of the other players out to rob him of his poker winnings. Interestingly, many of the residents at the Cooperative were more disturbed by the fact that Shand was accused of being a peeping Tom and rapist than with the possibility that he killed a police officer.

The wheels of justice turned quite quickly after Shand’s arrest on June 29, 1970. He was committed to trial with the case to be heard October 5 -15, 1970, Court of Queen’s Bench, Justice John M. Hunt presiding. R.W. and I made a conscious decision to be in the spectator seats for as many trial dates as we could and we exercised much discipline to be there on time. Once or twice we did make eye contact with Shand and occasionally with other acquaintances in the courtroom. I don’t recall any conversation or discussion with any of those individuals.   Shand was found guilty and remanded for sentencing on October 10, 1970. Of course we decided we had to be in attendance at the sentencing.

I anticipated that sentencing would be routine and that I would not feel much of anything when it was completed. Boy, was I wrong! I don’t recall most of the preamble or reading of the charge but the words enunciated so clearly by Justice Hunt echo in my mind to this day. “Thomas Shand, you shall be taken from hence to the place from whence you came, and from thence to a place of execution, where you shall be hanged by the neck until you be dead. May God have mercy upon your Soul.” Concise, simple, clear direction that would end a man’s life. I had now witnessed first-hand the threat of death by the state as retribution for the killing of a police officer, a crime which carried the mandatory death sentence.

In finding Shand guilty the jury did not make any recommendation as to clemency and his initial date of execution was set for June 10, 1971, not quite a year from the day he murdered Det. Houston. Predictably, Shand appealed to the Supreme Court putting the execution momentarily on hold. The Supreme Court dismissed the appeal on November 30, 1971 and the execution date was rescheduled a second time to March 8, 1972. But Thomas Shand was not hanged as his neck was snatched out of the noose on February 24, 1972 by Order in Council of the government of Pierre Elliot Trudeau commuting his sentence to life imprisonment. Those who favour capital punishment will say that the wheels of justice stopped turning that day. I do not share that view nor do most Canadians. No hanging has occurred in Canada since December 11,1962 when Arthur Lucas and Ronald Turpin were hanged together at the Don Jail in Toronto. The debate on capital punishment in Canada today is not one that simmers or rages. It merely exists quietly without force or fury.

For his part, Thomas Shand served the mandatory part of his life sentence, was released from prison, and ended his life by hanging himself on November 7, 1985.

For my part, Shand’s sentencing in the hushed Winnipeg courtroom is seared forever in my audio memory as evidence of our capacity to execute (pardon the use of both ‘execute’ and ‘pardon’ in this sentence) unspeakable acts upon our peers. Not so far away from the actions I knew so intimately as a young boy. But no amount of childhood playing at cops and robbers, or desensitization to death by killing bugs or rodents, or watching farm animals being sent to the slaughter, or studying military battles and mourning war dead, prepared me for that moment when a man was sentenced to die, deliberately, purposefully, legally, by the very hand of another human. The sheer enormity of this decision, this threat, this action, overwhelmed me. I was neither friend nor family of Tom Shand. I barely knew him. But in that moment of sentencing both Shand and the State reeked equally of barbarism, and it startled me.

The rational part of my brain wants to reason that Shand had a Soul that was integral to his being until he committed suicide. Thereafter his material body existed only as momentary testimony to the fact that it had one day been inhabited by a Soul. But … there are always more questions than answers. Hadn’t Tom Shand’s Soul had been given an eviction notice when he was sentenced to hang? Or perhaps, arguably, such notice is illegitimate in that it was delivered by a Soulless state? If Tom Shand’s Soul persisted past the time of his death by suicide, where did it go? To rehabilitation perhaps?

Whew!  I think it is time to change gears and move on to something else – like – what – more murder?

Murder in the Garden

Death and gardens go hand in glove. Flowers adorn graves. Wreaths are laid against memorials and monuments. Masses of slimy annuals are cruel evidence of an untimely frost. Faces of daisies shine brilliantly until they beg to be deadheaded by the gardener. Early birds catch worms; insects provide fodder for chickadees, robins, nuthatches, woodpeckers, purple martins, and many other birds; and mice and voles are favourite meals for owls, hawks and falcons. In colder climates, tropical bougainvillea and mandevilla are sacrificed as annuals to provide showy colour until the very last second of good weather when they succumb to Jack Frost’s killer bite. Some gardeners go to great extremes to protect tender species of roses and fruit trees by laying them down and burying them under the earth, covered with straw, cheating Mother Nature by intervening in her genetic predetermination that they should die in a zone 3 climate. Plants die providing compost turned into rich humus and bountiful growth in subsequent years. If it is safe to do so, we are encouraged to leave dead trees standing (called a snag) as hosts for insects and dining rooms for woodpeckers. I haven’t counted but I am sure there are thousands of different ways to itemize and examine death in the garden. This does not particularly bother us and we let such events pass with little if any thought, never mind consternation.

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla sacrifice early October 2015 Photo: S.Marshall

Mandevilla sacrifice late October 2015    Photo: S.Marshall

I am now confessing that I, along with an unnamed accomplice, conspired to commit murder in the garden. It happened many years ago when our children were much younger and consequently much more impressionable than they are now. I worry about the effect that my actions have had upon them. You see, I was eating a grapefruit one day when I noticed the pip had a small greenish yellow growth emanating from it. I reflected upon my very first school scientific experiment conducted in Miss Mary Armitage’s Grade One class. [Yes, it was Miss and not Ms. in those days and there was no kindergarten – junior, senior or otherwise. I know, I have been greatly disadvantaged as a result.] The experiment was to have a bean germinate by placing it in a jar with a damp tissue. It matters not whether the jar is in light or dark. After a few days, white roots begin to emanate from the bean and a small green leaf emerges from the opposite side. Germination is complete and all we need to do is plant the geminated seed in soil and tend as normal. Since the first steps had already been completed I just shoved the grapefruit seed into some soil in a very small pot and placed it in the kitchen window, watering it occasionally. It grew a few inches that summer, lay dormant for the winter months and continued its upward growth trajectory the following spring.

The tiny grapefruit tree enjoyed the next few years, repeating a cycle of joyful basking in the sun accompanied by new growth and vigour in the summer and a period of virtual dormancy in temperatures not far above freezing causing some of its leaves look slightly sickly.   I hasten to point out that we did not coddle the grapefruit. It mustered and stored enough strength in the summer to see it through the long Ottawa winters.

I am not certain as to how any years passed but the grapefruit continued to grow vigorously. It spent the warm weather summers out on our patio enjoying the natural rainwater in its roots and the wind blowing through its leaves. It forced us to free its root bound mass from its too small pot several times, transplanting it each time to a new pot larger than the last. The tree outgrew its spot in the bow window in the kitchen, graduating to a spot on a side table in the family room, before landing in on the floor of our family room next to my favourite easy chair. Each summer we wrestled the taller and leafier tree in a larger and heavier pot through a patio door that had suddenly become too small.

The grapefruit of course never flowered or bore fruit. We made no effort to see if it could, leaving it to its own devices. Nevertheless, there was one occasion when it appeared that it had fruit. I love kumquats and was relaxing in my easy chair enjoying each explosion of orangey tartness as I popped the expensive little fruits into my mouth. I thought it might be fun to stick a few kumquats on the spikes of the grapefruit tree. Yes, they have quite long almost lethal spikes that attacked me on more than one occasion as we ferried the tree to patio and back each year. The kumquats looked as if they belonged. I waited and it wasn’t long before a couple of children took the bait and excitedly announced that the grapefruit tree had baby grapefruit! Of course, it also wasn’t long before they reasoned, smart children as they are, that this was a small joke initiated by their father. They are smart children because they learned very early in life to question everything I said or did. They learned that I was not above stretching the truth or testing their credibility. True or not, I believe it is necessary in life to develop a critical point of view. Never accept anything at face value. It may not be what it seems. The little kumquat/grapefruit joke was one of those occasions. Some children still remember it, somewhat begrudgingly if not fondly.

One spring it became clear that the grapefruit tree had a strong desire to reach its genetically pre-determined height of 40 feet or more. It strained to push its way through the 10-foot ceilings of our family room. Its failure to push a hole in the ceiling resulted in the upper most branches bending back in an attempt to grow with its head upside down. Something had to be done. Cutting a hole in the ceiling was not an option. It was then that my accomplice (still unnamed) and I conspired to murder the grapefruit tree.

After the last chance of frost that spring we moved the grapefruit outside but instead of leaving it on the patio to sunbath, we freed its roots from the still too small pot and placed it in a hole dug situated specifically to ensure maximum sunlight.   To say the grapefruit flourished would be an understatement. It was now free to send its branches upwards and outwards as far as it could reach. It was now free to send its roots downwards and outwards as far as they could reach. Freedom is such a …well … freeing feeling. The grapefruit’s leaves were a healthy green not seen before and the branches seemed to wave a heartfelt thank you in the breezes. It was a glorious summer for grapefruit but we knew it would end, and it would not end well.

The grapefruit never really knew what hit it. Murder is often that way – sudden, unsuspected, brutal, and heartless. I watched from the kitchen window as the first hard frost sent the tree into shock. As the days passed, it grew colder and snow drifted through grapefruit’s canopy, its leaves stubbornly refusing to fall. Grapefruit trees are not genetically wired to survive our freezing, bitterly cold climate. I am not sure of the exact time of death for grapefruit but I suspect it was relatively sudden. While I do relish the fact that we were able to give grapefruit one last blast that summer, I feel a distinct sadness that it had to end the way it did – by premeditated cold-sapped murder in the garden by the gardener and his accomplice using the winter’s cold. I wonder if murder is always accompanied by remorse?

There is often one last blast of beauty before winter arrives Photo: S. Marshall

There is always one last blast of beauty before winter arrives Photo: S. Marshall

Is the Death of Parkinson’s too much to ask?

Parkies are fond of saying, “You don’t die from Parkinson’s but you will die with Parkinson’s.” I am not sure of the origin of this slogan, but It was always one with which I could identify as it helps me understand why Parkinson’s is so insidious. Others such as Kirk Gibson, former major league baseball hero and relatively recently diagnosed PwP, state “It’s (Parkinson’s) not a death sentence. It doesn’t have to be a death sentence. So you start looking at a course of action, and you have to implement it.” Interesting quote from Kirk. The first sentence says that it is not a death sentence. That seems rather definitive, doesn’t it? But then he immediately qualifies it by saying that it doesn’t have to be a death sentence. So it might be a death sentence some of the time but not every time? This may be confusing, or I may be confused, but when you think about Parkinson’s, it is consistent with its insidiousness. It is a long term, chronic (persistent) disease that gets progressively worse. You ought to die from its many symptoms and the increasing severity of those symptoms, but you don’t. Parkinson’s doesn’t even have the decency to kill you.

Don’t get me wrong; I am not saying that I wish Parkinson’s were a deadly disease. I am just saying that the struggle ahead of us is a long one requiring tonnes of willpower, commitment and support to delay the inevitable. But delay it we will with more and better drugs e.g., agonists; better delivery systems for the drugs e.g., duodopa pumps and rotigotine patches; better surgical interventions such as deep brain stimulation (DBS) or non-invasive ultrasound; better exercise and physiotherapy regimes to establish coordination, flexibility and mobility; better technical devices and tools to assist with our postural stability, balance and tremour issues; and continued research and development of neuroplasticity to repair or overcome damaged or forgotten brain – muscle pathways;   better therapies to overcome the all too many motor and non-motor symptoms and conditions of Parkinson’s including pain.

As death is the overall general theme of this blog, it may seem self-evident that defeating Parkinson’s necessarily means the death of whatever causes Parkinson’s. Oh, by the way, did I mention that we don’t really know what causes Parkinson’s disease? With that sad truth the road to defeat PD seems infinitely long with many unknown barriers. But there seems to be room for optimism.   Many scientists believe that the secret to finding a cure lies in misfolded protein called Prions that do not carry any genetic material. Huh? How can this be? Essentially, scientists believe that Prions can infect, multiply and kill and this is what happens when alpha-synuclein proteins misfold and form clumps of Lewy Bodies in the substantia nigra of the brain resulting in the death of dopamine producing neurons. The resulting dopamine deprived condition is Parkinson’s disease.

So all we have to do is to deal with those nasty misfolded alpha-synuclein proteins. Simple enough, you say? Wait, it seems that we don’t really know why these proteins misfold and after 50 years of research and debate, some scientists are still not convinced that such Prions even exist. Are we a whole lot further ahead? I suppose we are in that science is now focussed on developing a vaccine to kill the misfolded alpha-synuclein as part of a targeted immunotherapy. The Boston Globe, The Beginning of the end? The race for a Parkinson’s cure September 15, 2015 reports that this may be the breakthrough we need. But the most exciting part may be that science has finally turned the corner toward accepting that there are Prion-like diseases that infect, spread and kill. Therefore it should be possible to slow or stop the progress of both motor and non-motor symptoms of PD. This is about as close to saying we are on the road to a cure as damn is to swearing. But why has it taken over 50 years to get to this stage – a stage we think is monumentally ahead of where we were, but still monumentally far away from a cure?

The “stuff” of science is seldom done at breakneck speed. Science plods along for the most part, making small incremental gains that lay the groundwork for other small incremental gains, or sometimes lead to dead ends that are a waste of time and resources. Occasionally there is a breakthrough that sends us light years ahead. Let us hope that the science of Prions is at such a juncture and that the race for a vaccine, and any concomitant financial rewards for such a patent, is the ultimate impetus for success.

Scientific knowledge advances slowly not only because the work of science is most often pedantic and meticulous, but also because it is subject to the forces of politics, the economy, ideology, psychology, and social relations present within society and the scientific community of the time. To understand why Prion science has taken over 50 years to reach a state of “maybe”, read Jay Ingram, Fatal Flaws: How a Misfolded Protein Baffled Scientists and Changed the way we look at the Brain, Harper Collins, 2012. Ingram takes us through the science of Prions from Kuru disease to Creutzfeld-Jakob disease to bovine spongiform encephalopathy (BSE or mad cow disease) to chronic wasting disease to Alzheimer’s to amyotrophic lateral sclerosis (ALS) to Parkinson’s disease. This book could have just as aptly been entitled, While We Know a Lot, We Don’t Know Nuthin’ Yet.

Parky and books IMG_4764

What does the future hold? As Yogi Berra once said, “It is tough to make predictions, especially about the future.” He is also attributed to be the originator of the more popular truism, “It ain’t over ‘til it’s over.” Indeed, predicting the end of Parkinson’s disease is a bit of a mug’s game i.e., it is more likely to end in failure than success. Still, I know some who are adamant that the end is close because there has never been as much research on Parkinson’s in the works as there is now. True, but I fear that it is not the quantity of the research at any given time that is important, it is the capacity to isolate and direct a fatal surgical (or perhaps neuroplastic?) strike at the jugular of the disease.

It’s all about the ‘plasticity’, baby

While many millions of dollars are being expended each year in laboratories around the world to develop pharmaceutical therapies to prevent the development of Parkinson’s, to obviate the symptoms of Parkinson’s, to slow the progression of Parkinson’s, and ultimately to cure Parkinson’s, there is a second approach, neuroplasticity, that warrants discussion.

Norman Doidge’s book, The Brain’s Way of Healing, Viking Penguin 2015 has generated considerable excitement among those seeking non-invasive ways to change and/or heal the brain usually with the application of light, sound, vibration, motion, or electricity.

There are two chapters in this book that are of particular interest to me. The first is on pain and the second is about Parkinson’s disease. As it turns out, I have both. In the first case, a physician (Dr. Michael Moskowitz) uses brain maps of his pain to understand his chronic (persistent) pain. Initially, he focused on the pain in an effort to reduce it but the very processing of that focus resulted in an increase in the intensity of pain because the pain maps enlarge and pain signals are referred to and from other adjacent pain maps. In short, the more the neurons in your brain are activated or trained to fire the more sensitive they become and the more intense the pain becomes.   The result is a neuroplastic process called “windup pain” and is described as “plasticity gone wild.”

So, how does one decrease pain if attempts to unlearn pain fail? Ingeniously, he draws three pictures of the brain; the first depicts a brain in acute pain from a specific site on the body; the second drawing is a brain in chronic pain over a larger area; the third shows a brain not receiving any signals of pain and has the smallest area of the three. To make a long scientific story short, whenever he feels pain, he visualizes the three brain maps and determinedly, doggedly, relentlessly imagines the largest area of pain firing in the neurons as shrinking. He tries to “disconnect the network and shrink the map” through visualization techniques. The smaller the area devoted to pain, the less he feels the pain. Moskowitz claims that this is neither pain management nor placebo effect. Rather, it is truly a neuroplasticity technique that reduces pain perhaps to the point of elimination. Seems crazy eh? But, Dr. Maskowitz and others are adamant that it works.

In the Parkinson’s chapter, a South African man, John Pepper, purportedly beats Parkinson’s disease through purposeful or conscious walking. He was diagnosed as early onset and noticed both motor and non-motor symptoms (tremor, lack of coordination, rigidity, constipation, micrographia, freezing, slowness of gait, among others) as early as when he was 30 years old. In his efforts to “normalize” his gait, eliminate his stoop, maximize his arm swing, and lengthen his stride, he considers each movement in explicit detail and moves with concentrated and purposeful precision. He begins to realize that he is controlling his conscious walking with a different part of the brain from the part that controls automatic walking. Doidge postulates that Pepper was “unmasking existing brain circuits that had fallen into disuse” after depletion of dopamine in the substantia nigra rendered automatic movements inoperative, Pepper’s conscious walking technique activates other areas of the brain to bypass this blockage. In this way, old neuropathways that have fallen into disuse can be reactivated and new ones initiated, meaning that many aspects of Parkinson’s can be overcome.

Pepper’s claims were controversial in 2004 and remain controversial to this day. Much is made of whether Pepper’s Parkinson’s was typical or atypical, some sort of variant, etc. I will leave this point and others related to the science behind Pepper’s approach for others to debate. I agree with Doidge that the important instruction from Pepper is that exercise is beneficial in delaying or overcoming Parkinson’s symptoms. Recent studies are adding support to this statement. The big question that remains is whether Pepper’s concentrated, purposive, deliberate, conscious approach to walking constitutes an example of the healing power of a ‘plastic’ brain.

Accounts of brain plasticity, neuroplasticity, or the brain’s ability to heal itself and reject with finality neurodegenerative disease have me wondering if the death of Parkinson’s disease itself is now possible. Until now, research has focussed on finding the cause and developing a cure alongside pharmaceutical and technical means to alleviate and diminish symptoms and halt advancement. Will we be able to say that death applies to Parkinson’s as much as it apples to every other aspect of life i.e., death to Parkinson’s disease instead of dying with Parkinson’s disease?

If I were a betting man ….

Currently, if I were asked to wager on which approach would bring us closer to nailing the lid on the coffin of Parkinson’s disease, I would gamble that work in the lab with stem cells, Prions and misfolded alpha-synuclein protein has the best chance. Of course, while we may be closer now than we ever have been to that end in the lab, it has taken us over 50 years to reach this point and we are still not certain of the path. Consequently, I seriously doubt that it will happen in my lifetime and I am less certain that it will make a positive medical difference to me personally. Put bluntly, it is too late for me.

On the other hand, if the wager is on which approach will have a better and more immediate payoff for PwP, then I would bet on treatments involving neuroplasticity e.g., physiotherapy, in combination with the development of better drugs, better delivery systems for those drugs (patches, intestinal pumps) and the development of invasive and non-invasive surgical methods such as deep brain stimulation (DBS) and ultrasound. I perceive that these are more likely to have a direct, positive impact on my cohort of PwP and me personally.

What do I fervently wish for? My fondest dream is for science to render Parkinson’s dead through the development of the means to both prevent and cure this insidious disease – a disease that has no Soul but steals Souls with frightening regularity. When it comes to Parkinson’s, mortality is infinitely preferable to immortality. I just what to know what those other life strategies are? The book I rejected as cottage reading is floating back to the top.

Caveat

The stories recounted here are real and form part of my personal experience. My sole original purpose in telling them was to expose both the complexity and simplicity of death and dying. But wouldn’t you know it; death is funny in that you never know what is simple and what is complex. It is very similar to Parkinson’s disease in this respect.

 Any interpretations and observations as to the existence of a Soul, Life Force, Spirit, etc. are strictly my own. I cannot warrant the verity or accuracy of any philosophical or religious reflections that may, or may not, bear resemblance to any organized body of work or thought.

Post Script Script

This could be a Marx Brothers script:

Groucho: (working his eyebrows) Was that a caveat or a cadaver? Has anyone seen an organized body around here… or even a disorganized one?

Zeppo: (Toots his horn)

Groucho (Looking lasciviously at the nearest woman): And, what’s that you say, “Immortality?” I thought you said “immorality” and I am just your man – if I live long enough.

Yogi Berra (hey, how did he get in here?): If you live long enough, it will be “déjà vu all over again.”

Groucho (stealing Yogi’s line): Well then, the future ain’t what it used to be.

Zeppo: (Toots his horn.)

The PD Gardener (now this is getting weird): I never promised you a rose garden…. Wait a minute! I did!

(Groucho works his eyebrows vigorously)

The PD Gardener:  I apologize. Earlier, I promised to forget the Marx Brothers. But like bad clichés, they have a way of coming back, and like Parkinson’s they never really die.

(Fade to black)  

Vandals and Veggies; Pesticides and Parkinson’s

I am often asked whether we have a vegetable garden.  We don’t.  Our garden is largely perennial flowers with a few annuals interspersed here and there for colour, and a few plants ‘out of our climatic zone’ which we treat as annuals i.e., they either die with the frost or we dig up the tubers to store until the following spring.  A few kale are thriving presently because I had an impulse buy at the garden centre when I bought a selection for one of our daughters.

For several years, early in the existence of our current garden, we did have a few tomato plants but they did not thrive in partial shade and we didn’t deem them worthy to supplant more colourful masses of perennial flowers in the borders that were closer to full sun.  And I never seemed to find that perfect, sweet beefsteak tomato that I so fondly remember from my youth.  Or perhaps the slugs found it before I could get my hands on it?  The growing season always seemed to be too something – too hot, too cold, too wet, too dry – and the tomatoes grew too fast and split, or too slow and were little dry tasteless lumps.  In any case, I have the utmost admiration for those of you who have told me that you grow the most beautiful, “to die for” sweet tomatoes.  I just hope that I am not dying from them. (Much more on this thought later.)

Still, I have become increasingly intrigued by this question of why we have no vegetable garden, especially when many others we know are engaging in significant and well thought out projects of sustainable and organic produce gardening.  And my sister and husband in Saskatchewan have always had a substantial vegetable garden that was integral to their farm’s economic base i.e., they grew their own food – remarkable eh?   Their children in turn recognize the importance of such agricultural pursuits and assist with the garden on the home farm.  Vegetable gardens have been a way of life for generations on farms and in rural communities.  Why did I not carry this tradition into my urban existence?

As usual, I began my investigation into such questions by rummaging around in my memory banks for historical antecedents that might provide answers.  I had already been rummaging around in that murkiness anyway for clues as to why I now march unsteadily through life with Parkinson’s disease.  So it seems only natural to expand the scope a little. I have to say that I am a little surprised at what I am uncovering and it may take some time to assess, analyze and ferret out conclusions or patterns from my ever-diminishing memory banks.  This is a long way of saying that my thoughts will undoubtedly be spread out over many blog posts.  I apologize to those who are impatient and like to flip to the end of books to reveal the ending avoiding nuances in the plot.  And my apologies, of course, to those whose idea of a plot is being able to tweet an idea in exactly 140 characters.  They likely have already left the building.

For those who are remain, my musings on Parkinson’s and gardening will stretch far into the future – as I hope will my ability to engage in such activity.  While many people do claim to believe in the supernatural, I doubt very much that I will be communicating via Ouija board from the verdant and abundant Great Beyond, free from bindweed and ergot.  The best I will be able to do is to leave wisps of memories through which, it is my fondest hope, I will be remembered in the same manner that I am remembering those in my past – if that makes any sense.  In the meantime, I will just continue to throw my memories (and attendant feelings) about with reckless abandon as I wade (with the help of Google, I won’t lie here) through gazillions of megabytes of information.

In earlier posts I outlined our family’s lineage and passion for horticulture and perennial gardens.  While all of this is true, and there is much more to tell, I have neglected to admit to the details of a family which was also focused on the husbandry of vegetables and fruit as produce for use and sale.  I haven’t lied about anything. I just haven’t told you a whole lot of stuff that still needs to be told.  Also, I have discovered that it takes time to recall, tell and analyze the stories of a lifetime. In fact, if one did this precisely, it would take a lifetime plus the extra time required to review the “director’s commentary” so to speak.  I don’t know about you but I don’t have that much time so I shall endeavour to cut a few corners without, I hope, cheapening the product.

The fact of the matter is that our family always had substantial vegetable gardens.  In the village where we grew up (Altamont, Manitoba) we had a sizeable garden on the north side our house where we grew potatoes, corn, peas, carrots, beans, tomatoes, cucumbers, egg plant [which we did not really know how to cook in those days (1950s,) and no one called it “Aubergine,”] and always an experiment or two e.g., celery, which weren’t always successful.  The celery experiment wasn’t.  The one concession to flowers in that garden was a row of snapdragons planted along the front fence.  It entertained small children, girls and women all summer long as they pinched open the flowers’ yawning jaws and poked a finger gingerly inside with some merriment.  Boys and men deemed snapdragons to be not manly and instead did such things as kick puffball fungus (Calvatia gigantean) in the pastures for fun, spraying great clouds of spores.  And, in those days, we certainly never entertained any notion that this fungus could add an earthy, nutty flavour to fare on the dinner table.

A smaller flower garden on the south side of the house behind the rickety old garage was home to delphiniums, peonies, poppies as well as hollyhocks.  The hollyhocks, really a biennial plant, seemed to thrive in the scrabble of stoney soil and summer heat against the house.  These conditions produced a glorious row of beauty year after year.  How I envy those hollyhocks today!  Every year I make a valiant, but unsuccessful, attempt to reproduce the hollyhocks of my youth.  Thankfully, I have a lover, an artist, who has immortalized them for me on canvas.  I also covet the delphiniums but have been unsuccessful in our attempts to have them grace our spaces.  Other members of my immediate family can, and do, grow both hollyhocks and delphiniums, so the failure here is a “me” thing and not a generalized family trait.  I do so hope that it is the same for Parkinson’s disease.

 Anne F. Marshall "Hollyhocks"

Anne F. Marshall “Hollyhocks”

A second vegetable garden was located behind the store that my father owned and ran for many years.  The store was the Post Office, the barbershop, a small confectionery and magazine stand, the bus depot, the hub for my father’s small Rawleigh products distribution business, and the office from which my father sold Wawanesa Insurance policies on vehicles, homes, and crops to residents of Altamont and district.  Each of these short occupational identifiers contains many vignettes that I know will float to the surface in subsequent posts to this blog.  My mother worked in the Post Office for many years as my father was “on the road” peddling Rawleigh brand products ranging from bag balm to “Kool Aid” and pie filling.

If you were to apply a class analysis to our situation, you would say we were “petite bourgeois” or “middle class.”  The fact of the matter is that the vegetable gardens probably were the only thing that lifted our existence out of poverty for most of my childhood life.  In our home we had no running water and no sanitation.  We had a well that was located under our basement stairs and we used a hand pump at the top of the stairs from which we drank and filled our washbasin or pots to be heated on the stove.  We did have electricity so no wood stove in the kitchen.  Periodically, the well was cleaned to rid it of worms, and salamanders.  Our toilet was a “honey bucket” in the basement that I had the pleasure of emptying when I grew old enough (about 10).  It was dumped into a pit at the farthest edge of our property away from the house – a place where, my father believed, the water table and an underground stream did not flow towards our well but away from it.  A coal-burning furnace (initially burning bituminous and later adapted to anthracite) in the basement provided heat for the household.  An electric furnace later replaced it, mercifully.

Don’t get me wrong; I am not trying to give the impression that we lived in squalor.  We didn’t.  While it wasn’t an easy existence, our gardens and an orchard on my grandparent’s farm, contributed greatly to our economic base.  A gendered division of labour existed with my father tending the gardens and my mother working in the kitchen canning, blanching, and freezing produce.  It was hard work and I remember my mother hating some parts of it – especially working late into the evening over a hot stove covered with steaming pots.

My parents struggled to pull our family out of the worst parts of that existence.  Ironically, in the end, they accomplished that by throwing off the yoke of this so-called petite bourgeois existence to join the working class when my father retrained as a stationery engineer.  One might say we were truly “proletarianized” in Marxist terms; or lost some status in Weberian [Max Weber] terms; or alternatively perhaps, the increased income moved us a few rungs up on the ladder of social mobility according to Canadian sociologist John Porter.  This has always left me in a bit of a quandary.  Did we succeed or fail?  In any case, this story of class change will be the subject of a future bog post, one not yet written – at least not outside of my mind.

But as I was saying, the gardens continued behind this primitive conception of the urban mall – the Post Office.  Here we grew potatoes, rows and rows of them, and asparagus! Long rows of asparagus!  In my small village, very few people knew about this culinary delight and fewer still grew it purposefully.  Those who did revelled in its beauty through their taste buds.  At the most tender opportunity, my dad would cut the young spears with his pocket knife and they would be served up slathered with pepper and butter, a white sauce, or a cheese sauce.  I know, I know…. my mother was never a great cook, but this was about as good as it could get.  As a young lad I thoroughly enjoyed asparagus and continue to do so to this very day, although usually without the sauces.  Once the spears began to be too woody (about the time they put them out in the stores where I shop today) dad would let the plants grow to create a great long, green hedge of feathers and seeds.  Asparagus eating was over for another year.

Altamont Post Office 2014  Photo: C. Baumann

Former Altamont Post Office, 2014                                                            Photo: C. Baumann

Two large patches of rhubarb (one located disturbingly close to the “honey bucket” pit) provided us with rhubarb pies, crumble, and sauce for a good month or more in the spring before their stalks grew woody and became more bitter than tart.  Of course, rhubarb provided handy hats for children and we ran about the lawn with the inverted leaves on our heads, stalks sticking upward like giant antennae receiving signals from faraway galaxies – signals that caused our legs to run and jump in the joyous abandonment of a Celtic ritual, halted only when some child fell and cried.  Every house on the prairies had a patch of rhubarb.  Old homesteads in Manitoba, houses and families long departed, are usually marked by three things: a foundation where the original house stood providing shelter from unbearably cold winters; a patch of common day lilies or “ditch lilies” providing food for the eye in July, “brightening the place up a little”; and rhubarb, providing the perfect blend of tart and sweet in the form of a pie or crumble which, I swear, kept marriages and families together when under other circumstances, they would have crumbled.

In addition to these gardens, we always seemed to receive a share of a large crop of potatoes that spent the summer multiplying in a field at my grandfather’s farm.  On a crisp day in the fall, dad and our family, and two or three of his brothers and their families would gather at the farm to harvest the potatoes which had been somewhat gently turned out of the soil with a cultivator drawn by a tractor (and in the early days, a horse.)  All kids scattered out across the rows to toss potatoes, large and small, into “gunny sacks” or burlap bags.  The bags were then hoisted onto a hay rack drawn through the field by a horse with my Uncle Cecil at the reins.

As an aside, I recall two horses at the farm – one was a broken down racehorse that we children were never allowed to ride.  It was skittish and danced with anticipation when it was being prepared for a ride.  I only ever saw Uncle Cecil ride that horse and, broken down or not, it seemed to me that it could still fly like the wind.  The other horse was a sturdy plow horse – probably a Clydesdale named Major, I think.  I have observed that every farm with a plow horse of Clydesdale (particularly,) Belgian, or Percheron blood has, or had, at least one horse, and probably more, named Major.  In any case, we were allowed to ride Major and often did take him down into the orchard where he would spend most of his time reaching for apples, while we wrenched the reins trying to get him to go somewhere without apples.  Any modern day horse person (of any level of expertise) will cringe at the thought, but we didn’t know what we didn’t know, if you know what I mean. We had a hell of a good time.

But the vegetable gardens of my youth were not always fun and joy.  The fields did not require much hand weeding and other maintenance but the town gardens certainly did. We were often sent into the garden to weed every inch of soil that was not inhabited by productive foliage.  I remember having to hill the potatoes, a concept I grasped very early in life, as I was wielding a hoe about three feet longer than I was tall.  Perhaps, my skills with a hockey stick were initiated by this activity – although I am pretty sure that no one ever described my stick handling abilities as “like hoeing potatoes,” thank goodness.

Pernicious flora was not the only threats in the gardens.  Fauna played their nasty roles as well.  Potato bugs were common and I recall going up and down the rows, looking under potato leaves where those little black and yellow striped insects (Colorado potato bugs) would be munching away happily.  We had to pick them off with our fingers and put them in a tin can.  I am not sure what exactly happened to them after that, but I think they were doused with gasoline and set on fire, or sometimes doused with soapy water, a process that I deemed to be preferable but no less lethal.  As well, we were expected to crush with our fingers any masses of eggs we discovered under the leaves – a particularly squeamish duty but nevertheless one to which I became enured quickly.

Colorado Potato Beetle.   Photo by Z.

Colorado Potato Beetle.                                                                             Photo by Z.

Cutworms were also a problem and we dug around the base of the young plants to unearth the curled up larvae and place them in the can for disposal.  Our failure to tend to these duties properly became very evident in a day or so when the leaves would be reduced to stems or the plant was laying on the ground from cutworm damage.  These insects also attacked tomato, pepper and eggplants but we had far fewer of those to attend.

Presently, I understand that cutworms are a significant pest for Canola (rapeseed) crops.  Canola was not a big cash crop in my youth but it seems that the cutworms were clearly there, waiting for better times.  Chemical control for cutworms is made more difficult because of their nocturnal feeding habits and laying under the surface during the day. Insecticides need to make contact with the pest in order to be effective.  In addition, cutworms do not feed during molting making it difficult to time chemical application.   Consequently, I am uncertain as to whether insecticides were used extensively for cutworm control during my youth.  There are other non-chemical means of cutworm management e.g., summerfallowing and delayed seeding – and, of course, sending children into the garden to “harvest” them.

Our vegetable gardens were augmented by many kinds of fruit grown in the orchard and berry patches on my grandparents’ farm.  Baskets of apples (eating, baking, crab, jelly,) strawberries, raspberries, watermelon, “muskmelon” [what we call cantaloupe today,] not only reached our table but were sold to others in the community.  “You pick it” farms were not yet in vogue.  I was often pressed into service to assist my grandmother and my cousins to pick the ripe fruit which was sold by word of mouth to the first callers – some stopping by the farm “on spec” and others calling on the party line telephone which hung on the wall like the future museum piece it was to become, and jangled out the correct number of long and short rings.  My grandfather experimented with many fruits and did develop a type of apricot that was hardy enough to produce fruit in the short Manitoba growing season.  I remember savouring its somewhat foreign (to me at least) juicy flesh.

I will return to stories of the orchard in future posts.  They surface too often in my memories to remain hidden for long.  But for now, suffice it to say, that I am pretty certain that these orchards did not produce fruit that was “organically grown.”  But again, I do not have firm evidence of the type or extent of chemical use, so any possible impact on my life or that of others cannot be stated or even alleged.

In other posts, I have contemplated the environmental antecedents for my Parkinson’s.  I am not an environmental research scientist, and I have no conclusive evidence of environmental factors in my own case.  I was far too young to keep records of any kind, never mind accurate records, or to make observations, which would stand the test of scientific methodological rigour.  However, one has to wonder whether there is truth in oral history as much as in scientific data gathering.  These reflections always make me return to the pesticides (insecticides) in common use during my childhood.  DDT always jumps to mind.

Interestingly, a German student, Othmar Zeidler, first synthesized DDT (dichlorodiphenyltrichloroethane) in a purely scientific experiment in 1874.  But Zeidler had no idea of its commercial potential and it was not until 1939 when chemist, Dr. Paul Herman Mûller, an employee of the dye-manufacturing firm of J. R. Geigy, S.A of Basel, produced it for commercial use.  DDT was used extensively in controlling Colorado potato beetles before it was used for a whole host of other applications.  I know that by the late 1950s (I was born in 1949) my father was applying “potato dust” to control those self-same Colorado potato beetles.  Was it DDT? I have no conclusive evidence that it was but in all likelihood it was used at some point.  Oh, if my father were still alive, the questions I would ask him.  His passing predated my diagnosis with Parkinson’s and these questions were not as important to me then as they are now.

By the late 1950s another pesticide Carbaryl (1-naphthyl methylcarbamate) was developed by Union Carbide and touted as a broad-spectrum insecticide.  It was sold to American farmers under the chemical name Sevin and is still available today to kill a wide variety of insects.  Initially, it was touted as having few after effects and little residue.  As a kid in the 1960s I am pretty sure that I remember my Dad using Sevin dust on his potatoes and tomatoes.  It has been described as a pesticide and a neurotoxin “which in plain English means that they act on the nervous system of the insect [and humans presumably?].  In insects they scramble nerve impulses causing neurological misfires and ending in paralysis and death.”

If I had to describe my own experience with Parkinson’s and Dystonia, the words “neurological misfires and scrambled nerve impulses” would not be far from my mind. God, I may have to become a chemical engineer and an environmental scientist to sort out my own disease.

Altamont, Manitoba 1985  Photo: United Grain Growers

Altamont, Manitoba 1985                                                       Photo: United Grain Growers

As I write this post, I have some fleeting images of a particular episode in the garden – not one of our family’s gardens but some other gardens around the village.  I could not have been more than five or six years of age.  [It seems that in these last few posts I am regressing into childhood memories in search of … something … I am not sure what.] In any case, I had an accomplice – let’s call him “Z” [not his real initial] in order to protect the guilty, for he was surely guilty, as was I.

Gardens in Altamont hardly ever had fences around them, and when they did, they were often in poor repair and offered no resistance or barrier to anyone who wanted to to gain entry.  Such was the case with Mrs. X’s garden, and I believe it was also the case with Mr. X’s garden.  Mrs. X and Mr. X had the same name but were not married.  They may have been related but I do not believe that any familial relationship was entered into evidence at the time and therefore it is likely irrelevant to the outcome of this case.  While I am certain that Mrs. X and Mr. X are quite dead, and that the statute of limitations has long run out on the commission of any crime(s),  I have disguised the names of the victims in order to protect myself from any litigation and/or charges from their heirs and/or successors, should they still seek damages or allege slander.

The evidence placed before a panel of two judges (my father and Z’s father) was that a redheaded vandal and an accomplice were spotted wreaking havoc in at least two gardens, and possibly more, at various locations around the community.  The redhead and accomplice were observed pulling various vegetation (carrots, peas, corn,  cucumbers and potatoes in particular) up by the roots and were frolicking about the garden waving and throwing both vegetation and produce willy-nilly.  As I recall, no bite marks were entered into evidence and it did not appear that the perpetrators consumed any carrots, peas, corn, cucumbers or potatoes.  Shelled pea pods were indeed found on the ground near the legumes but that was not unusual in any garden in the community as everyone ate fresh peas right out of the pod.

My defense of “being under the influence” and “just having a good time” must have fallen on deaf ears. I also protested that no one identified me by name but only referred to the alleged perpetrator as “that redheaded boy.”  I was adamant that just because I was the only redheaded boy of age 5 or 6 in the village did not mean that one from a neighboring town or environs did not sneak into our village intent on destroying gardens, and in the process besmirching my good reputation.  It seems this line of defense was not persuasive.

Perhaps, if I had a better lawyer, I might have been able to plea bargain.   Maybe Z and I should have reflected on the honesty of George Washington and professed boldly that we could not tell a lie and that we did indeed rip through Mrs. X’s and Mr. X’s gardens like little lethal tornadoes (certainly a grade up from dust devil) wreaking havoc among the fall harvest.

But, as it turns out, Z and I did not stand a chance.  The evidence mounted against us at each turn.  They had the dirt on us so to speak.  The potatoes had eyes and the corn had ears.  They saw, they heard and someone told.  (I personally think it was the tomatoes who heard it through the grape tomato vine – okay, okay, these bad puns don’t help my case either.)

To make matters worse, it seems the two perpetrators decided that it was such a nice warm day, and if one was going to frolic, one might as well frolic in the manner that true frolicking was meant to be done.  So we doffed several items of clothing that were subsequently found at the first garden (Mrs. X’s) and one of the principal scenes of the crime.  There is no evidence as to how we got to the second garden, almost all the way across the village, without calls being made to the morality squad (our mothers.)  I also have no evidence that these ragamuffins doffed all of their clothing but one might assume that if the punishment is commensurate with the crime that at least one of us met the criterion of being “indecent.”

So, it was determined that Z and I were two peas in a pod, and found guilty with no right to appeal.  Sentencing was to be carried out in accordance with local custom where parents both determined and meted out the punishment.

I am about to say something now that is not easily understood in this age of sensitive parenting.  It certainly is not meant to vilify or diminish my father in any way (especially in the eyes of my immediate and extended family) or to approve of corporal punishment.  I loved my father dearly for reasons most will never know, even though we disagreed on many things over the course of the years we spent on this planet together.  He was my earliest and best role model teaching me values and principles I hold dear to this day, and which have guided me almost without fail to good decisions throughout my life.  I accept responsibility for any decisions that have failed to meet the standard, inasmuch as I deviated of my own accord from those principles.  But some, when they read the following paragraph, will jump to inaccurate conclusions.  Sometimes, you have to live a lifetime to be able to calculate the end product of that lifetime.  Don’t be too quick to judge.

My father was a barber (among many other occupations as you heard earlier) and when I stepped out of bounds too seriously, I received a few smacks across my behind (always clothed) with the strap he used to sharpen his razors – firmly embedded in my mind as the “razor strop.”  This was one of those occasions.  Z was “grounded” – whatever that meant for a 6 year old – and he was tied to the kitchen table for a few hours “to each him a lesson.”  I recall at the time that I thought that action was more barbaric than the few smacks of the strap on my behind after I received a very stern lecture on the value of property and the importance of gardens for sustenance and survival.  My father had a way of ensuring there was always a lesson to be learned – from the behaviour that spawned the punishment – if not from the punishment itself.   You can know of the basic laws of physics but if you don’t understand them, it will be a painful life.  [Newton’s third law of motion: In a system where no external forces are present, every action force is always opposed by an equal and opposite reaction force.]  Sometimes, such laws are parallels for understanding social behaviour.

So what am I to understand from my explorations of the murky depths of the cognitive reaches of my already dopamine deficient brain?

(1) We do not have a veggie garden and I really don’t understand why not.  Sorry.  The familial history and socialization to vegetable gardening was certainly present throughout my youth.  Perhaps, the fact that I would have much rather been playing hockey, baseball or any other sport interfered with the maturation of such ideas.  Leaving home when I was 16 to pursue some of those goals undoubtedly caused any thoughts of vegetable gardens to be suppressed.  These are all areas which I have not explored in this post and won’t as they are too complex and, remarkably, too sensitive even these 50 years later to lay bare at this time.   That time will come in due course.

(2) Perhaps I have a subliminal chemical addiction to vegetables carrying insecticides that attack my neurological system.  This addiction may have clouded my judgment such that I deny the purity of environmentally sustainable market garden crops and blindly rely on corporate farming practices to look out for the well being of consumers i.e., corporate farming can provide cheap, accessible food eliminating the need for family or community gardens.  If the phrase “sheer folly” were not already coined, surely it would have to be in order to describe these views.

(3) There do seem to be some other potentially mitigating environmental factors in my life re: Parkinson’s, including possible contamination of ground water from sewage [In a previous blog I mentioned my father’s concern about arsenic levels] and possible effects from the coal burning furnaces and the coal stored in our basement.  To be fair, I have never read anywhere that coal has any association with Parkinson’s, but you never know.

(4) And lastly, my regression into the past led me to that place where I found myself frolicking nearly naked through a cloud of insecticide infusing my neurological system with the potential to “misfold” the alpha-synuclein protein in such a manner as to promote “misfires and scrambled nerve impulses.”  Ah Parkinson’s, my constant companion and nemesis, may ultimately be the key to understanding my entire life.

After Note: “Z” and I were found guilty of vandalism and willful destruction of property but I cannot escape the feeling that we were not the only perpetrators in the veggie garden that fine day.  But there was not enough evidence to convict them, and they remain at large.

How Miss Myrna Got My Dollar Or I Hate Fundraising But Do It Anyway

I have a love/hate relationship with fundraising. No wait, let’s face it, I actually hate fundraising. But there are lots of people who are brilliant at it and thank God they are. Without them many worthy causes would not have sufficient funds to conduct research, or develop and deliver valuable services and programs.

I worked for years in an organization that received many requests each day to support a wide variety of causes. Each applicant carefully tailored their request to show why their work would benefit our organizational goals and were deserving of our financial support. I was charged with making recommendations on our allocations. Most causes were worthy and I hated to turn anyone away completely. Decisions revolved primarily around how to divide a finite amount of money among an ever growing group of applicants, keeping not only the applicants who were our allies happy but also keeping my superiors happy as they had preferences among the applicants.  Diplomacy combined with ruthlessness in appropriate measures was essential to divide the pie successfully. And success often meant you pleased no one, irrespective of the size of the pie.  I never felt entirely comfortable in this role.

Now I am on the other side of the equation, asking friends, relatives, former work colleagues, neighbours, Twitter buddies, and complete strangers to support a cause about which I have become passionate – Parkinson’s disease.  You see, I have PD. There is no cure. It is a degenerative neurological disease which, in all likelihood, will get worse over the course of my lifetime and ultimately will render me incapable of independent movement and decision-making. Nevertheless, my request for assistance is not made for narrow personal gain. Rather, it is a plea to support a multi-faceted approach focusing on cause, cure and care. We must find the cause of Parkinson’s in order to prevent future cases; we must find a cure for those already afflicted; and we must advocate for and establish conditions for care so that Persons with Parkinson’s (PwP), their families and caregivers can survive the many challenges of this debilitating disease.  No one should face a future of Parkinson’s disease without organizational support and resources.

Parkinson's SuperWalk, Ottawa, Lakeside Gardens September 6, 2014

Parkinson SuperWalk, Ottawa, Lakeside Gardens September 6, 2014

I am certain that there are many reasons why people give money to favourite charities and organizations. Undoubtedly understanding philanthropy and the use of various techniques, strategies and technologies to increase giving is a science. And we employ professional fundraisers to maximize our return on investment such that good works can be accomplished effectively and efficiently. The world of fundraising and charitable work is filled with noble causes populated with good souls of enormous talent and skill who guide organizations to ever greater heights with each passing year. And yet the need is ever greater with each passing year.  At this point, a pessimist would just pull the blanket up over her/his head in an attempt to shut out both light and sound.  An optimist would (and should) revel in the advances made in each passing year. While we have not found a cure for Parkinson’s, no one can say that we have not made significant advances which make living with Parkinson’s more tolerable for PwP and their families/caregivers. Yes, I know that these advances are not enough and there is still great suffering for those afflicted.

I suspect that charitable organizations in small communities are reliant upon (or are part of) local faith and not-for-profit philanthropic organizations primarily supported by good, solid upstanding citizens who can rightly be called philanthropists and give generously from their own good fortune to those more in need. Who gives and why they give is undoubtedly one of the most important questions addressed by those who study philanthropy.

As always, I am not an expert in what I am about to say and the usual caveats apply.  But I shall forge ahead, sometimes careening from one idea to another much like a Parkie bouncing off walls while walking through a narrow hallway when the meds have worn off. While I may not proceed with style, grace, alacrity, or certainty of direction, rest assured that I proceed with great purpose. Consider the following:

Fundraising in small towns in the 1950s took many forms. Charitable works were carried out in several ways: by faith groups (called “churches” in those days) and their respective auxiliaries; by not-for-profit organizations who held meetings in secret, with secret codes of conduct, secret handshakes and greetings, but raised money very publicly to support highly visible projects; by individuals who gave selflessly and generously to worthy causes eschewing any public recognition; by families who suffered great loss in the untimely deaths of loved ones and wished to spare others a similar fate; by those who adhered to the belief that community is greater than the sum of the individuals within it and was a place of shared responsibility for its overall health and well being; and by those who learned that love is a powerful motivator converting personal tragedy into positive energy extending the force of life of their loved ones long past their deaths through charitable foundations and events.

In the small rural Manitoba town where I grew up, entertainment was where you found it. I often tell my children that the only toy I ever had was a stick with a nail in it. This is closer to the truth than I usually care to admit.  In the days before HBO and Netflix, entertainment sometimes found us when small troupes of singers, magicians and storytellers with pet skunks would pass through, booking the local hall for an evening before moving on to the next lucky town – spiriting out as many precious dollars as they could from the community before anyone asked for their money back, leaving behind only detritus for the hall caretaker to clear away.

But sometimes community-minded organizations, churches, and local businesses would coordinate to host a talent show – a loosely formed excuse to raise money for charity and showcase local talent. The night’s lineup could include the likes of: poets and poetry readers, tap dancers, folk singers, country and western groups, the wanna be rock band making its first appearance outside of an old barn, the local choir, a humorous skit about an operating room performed behind a curtain in silhouette à la Groucho Marx, and an emcee with a suitable patter of corny but clean jokes and enough brainpower to engage in witty repartee with the hecklers in the audience. The winners were selected by a panel of three individuals representing, somehow simultaneously, both the diversity and the commonality of the community. In other words, no one could complain about the results … and, at the same time, everyone could complain about the results if they wanted to do so. Few ever did. Small monetary awards signified success for the top three acts. The show relied on voluntary labour and donated goods, and, after a few small expenses, the proceeds went to local charities, and the good will stayed within the community.

Canadian one dollar bill 1954. Every dollar counts

In 1959 the Canadian one dollar bill was equivalent to $8.19 in 2014. Every dollar counts.

When I was about 10 years old, I recall being given a whole dollar to attend one such show – many story tellers would say “a crisp new dollar bill”, but mine was neither crisp nor new.  It was decidedly limp, worn, and slightly torn with illegible writing on one side. This dollar had not lingered long in any one pocket and it was not to linger long in mine. The Canadian loonie was far off in the distant future and this particular rag dollar was to retain a visage more akin to a rag than something shiny and collectable. My dollar was to pay for my entry and treats for the evening. The cost of admission was pegged at whatever people felt comfortable to give, knowing proceeds were being distributed to charity.  The dollar bill was all I had, and the most I had ever had in my own pocket at one time.  Filled with anticipation and excitement, I went to the community hall. This shy redheaded boy hesitantly approached the door and opened it slowly to peer inside. It was not yet dark outside and I could only make out dark shapes as my pupils struggled to adjust and process the information to spur my forward advance.

OMG!  Well, this acronym wasn’t in use in 1959, but I think I thought something equivalent to that as my eyes landed on the person who was selling tickets at the table just inside. It was Miss Myrna! – the teenage daughter of the school principal, and she was, from my recollection, very beautiful and extremely intimidating, rendering me incapable of both speech and rational thought. Miss Myrna, gorgeous senior in high school and me, grade 5 introvert – hardly a fair match in any interaction.

Miss Myrna was beautiful and mysterious  Photo: S. Marshall

Miss Myrna was beautiful and mysterious                           Photo: S. Marshall

I edged forward, aided by a push from someone behind who was annoyed at my reticence to enter.  I slowly proffered my ratty dollar bill. Miss Myrna took the bill gingerly between thumb and forefinger and asked how much I would like to pay for my entry fee.  Little did I know that I would parallel Stephen Leacock’s classic story of My Financial Career when I stumbled over my words and muttered, almost beneath my breath, “one dollar”. Miss Myrna smiled at me oh so sweetly and the dollar bill was now being caressed in her hands with a newly found fondness – or at least I thought so.  She asked, “Are you sure? That is an awful lot of money.” Whatever neurons were firing in my brain at that moment were not sufficient to overturn the previous decision.  Dry mouthed, I nodded. The decision was now confirmed – my full and only dollar was committed to go to charity and my evening was to be celebrated without any treats from the concession.  But I did feel good – good that I sacrificed as much as I was able to sacrifice for those who needed the dollar more than I did.  My consolation was that maybe, just maybe, Miss Myrna would judge me as a worthwhile soul and not an irritating, stinky, grade 5 toad.

In truth, I do not know what Miss Myrna thought about those few moments of interaction, if she thought about them at all.  My own recollection is that she did smile at me sweetly if not approvingly, or maybe it was approvingly if not sweetly – it is hard for a ten year old to tell the difference – several times during the evening as the talent performed. Two old time fiddlers – one of French Canadian heritage and one of Irish Ottawa Valley background – fought it out for first and second places with a series of jigs, reels, waltzes and a schottische thrown in for good measure.  Each was brought back for an encore presentation and they wrapped it up with a friendly fiddle duet. The crowd lapped it up. Third place went to two young highland lassies deftly performing a sword dance, much to the irritation of the youngsters in the crowd who cheered raucously for the newly formed rock and roll barn band.  Older folks in the audience were quite disgusted by this youthful, rebellious exuberance.

Over the coming days, I basked in the memory of Miss Myrna’s warm smile and reflected upon the complexities of charitable giving. I sometimes still do. Did I only donate that dollar because I was a young tadpole incapable of any meaningful interaction with a member of the opposite sex; because I was under the spell of a beautiful older woman; because I knew deep within my value system that the dollar was far better off in the treasury of the charity than in my own pocket where it would soon be converted into candy with limited use as currency; or because all humans are born with some notion of altruism which can be nurtured and directed towards enhancing the greater good of any community. Perhaps, it need not matter. The important point was that the dollar was given and this transaction was worthy of the needs of all concerned.

In today’s world, should we give to anyone who comes knocking on our door, calling our phone, or contacting us via the internet? When we give, are we all just tricked by pretty voices, pretty faces, sad stories, bad choices, hopeful prayers, slick players, and fancy lines for fundraising times?  Of course not. Giving, done freely within one’s means, without expectation of immediate selfish return, often carries the potential to accomplish more than intended, unbeknownst to either the giver or recipient.

When Anne and I announced our intention to marry and issued invitations to our wedding (the second marriage for each of us) there were discussions about wedding gifts and whether we should accept any at all. Neither of us had any need for traditional wedding gifts involving household goods, and we certainly did not need money.  We also knew that most of our friends and relatives would not be comfortable in attending without some form of gift. That is just the way they are. We thought about donations to charities but discounted it as being too impersonal for most even if it would be the most altruistic.  Sorry to disappoint, but altruism does not always win out – in the short term at least.

To make a long story short, we decided that for those who felt compelled to bring a gift, a small gift certificate to a local garden centre or nursery would suffice. Many guests did avail themselves of that option and various “‘gardens’ within the garden” began to unfold. The photo below is one perspective on this garden which has brought great joy to our lives over the past 18 years, and will continue to do so for many more. One of our children opted to be married against this backdrop five years ago. All of our children and our closest friends understand how much this garden means to our overall health and well being – particularly mine as I make my way through life with Parkinson’s.  Anne revels in the sheer riotous and often ridiculous madness of the colours, and the unpredictable yet ultimately perfectly chosen juxtaposition of colour and form upon which Mother Nature has deemed it suitable to place her signature.  The garden is my classroom – for matters agricultural, horticultural, political, sociological, philosophical, and spiritual. The lessons, not always immediately apparent, do reveal themselves ultimately with enough tactile and cerebral prodding.  It is a classroom whose doors never close.

Many gardens make up the garden

Many gardens make up the garden.  August 2014      Photo: S. Marshall

These few gifts given to us on our wedding day have blossomed into a profusion of colours, shapes, scents [even if the Parkie doesn’t smell them so well any more] and memories which nurture and guide our souls through the rhythms and “stuff of life” as my father would say. Giving is most often like that. It has benefits far beyond any human capacity to calculate the permutations.

So, did Miss Myrna unfairly take advantage of a young lad who stayed pretty much a ” country bumpkin” most of his life?  I think not. The lad, even at such a young age, wanted to impress – not always a good quality but not the worst by any stretch. There was no firm expectation of quid pro quo on either side.  The money was given and received in good faith, and put towards good charitable works by the local faith groups. The lad discovered that basic human interactions often contain lessons for later, and greater, life decisions.

Since I began writing The PD Gardener Blog about one year ago, it has received over  1,200 views in 32 different countries.  No matter where you live, I ask that you exercise the altruistic tendency of basic human nature (even if it may be tinged a little bit by a desire to impress) and support Parkinson’s SuperWalk 2014 by clicking on the link below to donate and/or join my team, The PD Gardener.

Help sow seeds in the many gardens that must flourish in order to subdue Parkinson’s and to support research, advocacy, policy development, services and programs.  And remember, giving, like gardening, is always worth the effort.

http://donate.parkinson.ca/site/TR/SuperWalk2014/EO_superwalk?px=1017712&pg=personal&fr_id=1155

Thank you!

Stan Marshall aka The PD Gardener

 

Parkinson’s: Was it me, the pesticides or Diefenbaker?

You know, I didn’t plan much of my life. What I mean is that most of my life seems to have just happened to me.  I was there obviously, but it was as if I was swept along with the current and occasionally I would thrust an oar into the water to change direction – maybe out to sea, maybe into choppy waters, or maybe into a safe harbor.  In retrospect, maybe I wasn’t paying a whole lot of attention to what was happening. The question is: should I have been paying more attention and taken a more active role in setting the trajectory for my body and soul?

Would my life be different (better?) if I had formulated a grand plan or blueprint for living my life with measureable goals of achievement?  I have talked to many people who have such an orientation. Their life’s path and goals can be either detailed or general but they are never in doubt that when the final tally of their life’s work (existence) is counted, that it will be called a “success.”  Most argue that humans can control or shape their own destinies through their talents, skills, and abilities, and hard work, good judgment, and good decision-making can always be credited for success.  And conversely, if you are not a success, then you must not have the necessary skills or, more likely, you have screwed up somewhere along the way, by exercising bad judgment, bad decision-making or not working hard enough.

Curbside Tansy: Good planning, bad planning, no planning?  Photo: S. Marshall

Curbside Tansy: Good planning, bad planning, no planning? Photo: S. Marshall

I am not convinced that I can look back over my life with such certainty and proclaim that the trajectory I have followed has been purposeful to the point that I can claim to be its author either way. I certainly don’t feel as if I had a vision and worked successfully to realize that vision.  Undoubtedly, some would say that is a terribly sad thing to admit as the word “failure” carries such a heavy burden. Rest assured, I do not feel as if my life, in any respect, has been a failure.  It is just that I did not set the course alone and was not always aware of the destination.  But, as authors usually say, “I am indebted to all who made this work possible but any errors and omissions are my responsibilities alone….”  Very few say, “I took a laissez faire approach to this work and this is the way it turned out….”

I also do not think that I am a fatalist: someone who thinks that “fate” pre-determines life’s chances, direction and outcome.  This doesn’t really fit all that well with a previous post about the long shadow of the gardener where I outline the gardener’s role in intervening in the course of Nature and the role that humans play in successfully altering certain aspects of diseases and conditions affecting and afflicting the human condition.  While we do not have a cure for Parkinson’s, we most certainly do mitigate its symptoms through the use of pharmaceuticals and we alter its intensity through Deep Brain Stimulation and delay its progression through exercise. So, I am not a fatalist but neither am I in the camp where humans can absolutely control their own destiny.  Could it be that I am unknowingly floating along with one oar occasionally dipping into the water so that I am going in circles only sporadically rather than all the time?  Hmmm … that is an intriguing thought at least.

I can pretty much tell you with certainty that no one plans to have Parkinson’s Disease.  But I have it.  Does this mean that I have screwed up somewhere along the away?  Did I miss a cue where I could have jabbed my oar into the water more forcefully to change course?  Does it mean that I am a failure – perhaps weak of mind, weak of body, or that I used poor or bad judgment along the way? Is having Parkinson’s Disease an individual failing or weakness?  Is it similar to smoking and its relationship to lung cancer where we can point to the smoker and say self-righteously that they should not have smoked; they should have known better; and now they are paying the price.

Perhaps, I should have washed my fruits and vegetables more diligently over the course of my lifetime to ensure that I was not ingesting harmful chemicals used in agriculture. Perhaps, it goes back to my parents and grandparents as they grew many of those fruits and vegetables on the farm and in small town gardens using pesticides predominant in the 1950s and 1960s (and maybe unwittingly exposing themselves and their families to unnecessarily high levels.) These decades have been coined the “Golden Age of Pesticides” led by that miracle chemical DDT which gained credibility for its effectiveness in WWII.  A whole host of products were developed – pesticides, herbicides, insecticides, bactericides, miticides, rodenticides, nematicides, and fungicides – attacking pests, insects, fungus, weeds and other organisms which threatened the production of the world’s food resources. We know now that this was unhealthy but do we know that any of these chemicals cause (or caused) Parkinson’s?

Some nasty products inherited from previous owner.  Photo: S. Marshall

Some nasty products inherited from the previous owner of our house.   Photo: S. Marshall

While the relationship between pesticides and Parkinson’s is under greater and greater scrutiny, at the moment there is no scientific proof that the relationship is anything more than a correlation.  Interestingly, I did grow up in Manitoba where persons with Parkinson’s are overrepresented compared to the Canadian population.  One might surmise that Manitoba would be the ideal crucible for Parkinson’s with exposures to pesticides in the production of grains and market garden produce.  But I did not grow up on the Red River Valley flood plain, which had the highest concentration of pesticide use.  I grew up on the Manitoba escarpment formed by the shores of receding glacial Lake Agassiz.  A University of Manitoba research paper indicates that the incidence of Parkinson’s is higher along the escarpment than elsewhere in the province.  But, as usual, there are some complicating factors inasmuch as the area also has high levels of cadmium and arsenic compounds which places well water at risk of contamination through erosion and runoff.  I remember my father talking about possible arsenic contamination in our wells when I was a child in the 1950s.  Everyone in our rural location was on well water.

The present always links to the past of course, but the equation is never linear.  I guess there is no shortage of areas for me to research, contemplate and on which to opine.  I grow more like my father every day.

It is neither for personal gain nor ideological correctness that I encourage research on the relationship between Parkinson’s and pesticides.  I am sure that many would like to pin Parkinson’s on corporate greed, malicious actions of misinformation or withholding of information, and malfeasance in the application of these products.  There is litigation underway currently in at least one instance involving flight attendants on the matter of the use of pesticides on aircraft and the incidence of Parkinson’s among flight attendants.  Believe me, I am very supportive of these legal claims, but I am resigned to the fact that the most likely outcome of litigation is a settlement to those affected if the case meets what I call the “Erin Brockovich threshold” where the evidence is weighty enough to tip the corporations into a settlement.  It is true that settlements flowing from litigation provide a monetary marker that some level of justice has been reached, and a confirmation that pain and suffering has monetary value.  Indeed, some corporate behaviours will have been changed for the better in the process.  But the primary question of cause and effect remains unanswered.

The current thinking is that some genetic formations are responsive to an environmental trigger for Parkinson’s and pesticides may provide that environmental trigger in some, but not all, instances.  Still, while we are pretty certain that not all cases of PD are the consequence of exposure to pesticides, these findings provide encouragement that we may be closer to finding the cause and a cure.  I can only hope that is the case.

As much as I would like to shift the blame for my having Parkinson’s to pesticides or some other external factor, let’s return for a moment to the assumption that I have some control over my own destiny.  A slightly revised formulation of my question would be:  is Parkinson’s a consequence of having lived a “bad” life?

I am sure that you will excuse me if I approach this question in my usual unorthodox manner by asking:  Did the Right Honourable John G. Diefenbaker have anything to do with my having Parkinson’s?  John Diefenbaker was Prime Minister of Canada from June 21, 1957, to April 22, 1963.  I was 8 years old when Diefenbaker was elected Prime Minister and I remember vividly being enthralled with this character.  I would listen to his voice quavering through the radio (we didn’t have a television yet) and I could imagine his lips (which had the odd quality of being thin skinned but plump at the same time, with the lower lip often in the pouting position) on the verge of launching a spray of spittle as he castigated then opposition leader Lester B. Pearson of the Liberals on some matter of policy or perhaps, personal, difference.   Diefenbaker was always fodder for political cartoonists but it was particularly so in his later years when his jowls would hang down below his chin, shaking in indignation at his critics both within and outside the Conservative Party.

[I am not going to expound on Diefenbaker’s record as a politician, as it is not germane to any argument that I am going to make here, other than to make a personal observation that his achievements make him look like a freakin’ socialist compared to our current Conservative Prime Minister.  Sorry, I couldn’t resist.]

At any rate a corollary question has to be asked.  Did Diefenbaker himself have Parkinson’s Disease?  Remember, this was a time when there was little research and little medical thinking on the nature or prevalence of PD.  One biographer, Phillip Buckner, says that Diefenbaker had a “nervous habit of shaking his jowls which led to rumours that he was suffering from Parkinson’s disease….” Of course an accusation of PD was designed to discredit Diefenbaker and cast doubt on his ability to lead a government.  On June 7, 2001 (22 years after Diefenbaker’s death,) the University of Saskatchewan took an unusual step to issue a press release, announcing research concluding that Diefenbaker did not suffer from Parkinson’s but had “essential tremor,” thus protecting, posthumously, his intellectual integrity and mental capacity to lead a Canadian national government.

OK, so what is all this about Diefenbaker?  The majority of you (a) weren’t even born when Diefenbaker was prime minister; (b) aren’t interested in historical political figures; (c) are apolitical; (d) live in another country; and e) think I have gone off my rocker.  These facts would indicate that I have gone in this direction pretty much to satisfy myself.  Could it be that I am now just beginning to understand that my recipe for blogging is one part self-indulgence on behalf of the writer, one part indulgence from the reader, and one part curiosity from both the writer and the reader as to whether any worthwhile windows on the writer’s soul will be opened if we continue?  I am not sure if you like this recipe, but as with any recipe, you should try it at least once – preferably not half-baked.

In spite of my early fascination with Diefenbaker, I was never a convert to his political vision and for years I openly made light of – no, I openly made fun of the possibility that Diefenbaker had Parkinson’s.  I would impersonate his voice and try to form a shake of my jowls (hidden beneath my beard!) in the most exaggerated manner possible with my lips quivering wetly and indignantly, “Ppppparkinson’s? Rrrriiiidicuulousss!”  It might have fit the atmosphere and political flavor of the moment and I recall that others and I laughed uproariously (more or less, depending on the amount of libation already consumed) at this totally inappropriate and spurious ad hominem attack.

So, I am left sometimes wondering:  am I now paying the price for some pretty stupid things I said about John G. Diefenbaker?  This is not the only stupid thing I have ever done in my life (my children will be surprised that I admit this,) but maybe it is the one thing that has floated to the top of some pond of scum that constitutes the totality of my failings, and the life I now live is matched to the chemical characteristics of that signature scum.

Sometimes the path and destination are not entirely clear. Photo: S. Marshall

Sometimes the path and destination are not entirely clear. Photo: S. Marshall

I haven’t made a study of how people rationalize life’s existence and condition, nor do I plan to do so.  Nevertheless, I would very surprised if any of us who have Parkinson’s doesn’t ask the question: why me?  [I am sure this is common for those who have other debilitating or life threatening conditions.]  And we begin to assess our life in ways that would offer an explanation.  There are, of course, many answers and many paths to follow in the quest for an answer.  Genetics? Pesticides? Other environmental factors?  God’s will?  The answer that makes sense to us as individuals provides the sustenance for our survival.  We need to understand and rationalize our existence, the condition of our existence, and the conditions placed upon our existence.  Not easy stuff to think about and not easy stuff to live.  Hopefully, each of us will find a path and an answer that allows for loving and caring relationships in our families and in our communities. I am exceedingly fortunate to have found such unequivocal love with Anne and all of our children.  But we must also, in our external relationships, free ourselves of bitterness and animosity to those who find different paths with different answers – whether existential or spiritual.

As I review these thoughts,  I am reminded that in a previous post, we flew perilously close to a philosophical sun without melting our wings; today I have taken us perilously close to religious concepts where we might conceivably burn up totally.  I have steered purposefully away from using words, concepts or constructs such as Heaven and Hell, sin and salvation.  Those ideas are undoubtedly on the path for many and are already part of the answer for many.  Are they part of mine?  They haven’t been to date. This is as far as I am prepared to go on this subject at the moment as it is quite foreign terrain for me.  Undoubtedly, I will wander there in future posts.

The only thing I am willing to concede is that I don’t for a minute think that John G. Diefenbaker would assign Parkinson’s Disease in an act of retribution from the Beyond.  But then, have I been speaking “literally” or “figuratively?”  Is Diefenbaker the personification of God?  I bet that he’s never been called that!  Although Dalton Camp may have called him the Devil!  (I hope this statement sends at least some of you scrambling for your Canadian political history books….)

So, why me?  It is not Diefenbaker’s doing.  I don’t believe it is because I led a “bad” life. Is it not fruitless to add up the totalities of one’s failures and successes to pass judgment on your life’s worth?  Anyway, isn’t that someone else’s job?  The jury is still out on the role of pesticides. And who knows whether I could have taken decisive action during my lifetime to change the course of my personal history with Parkinson’s?

Maybe the best answers are really questions: a) who knows (shrug)?  b) if gardens were planned like lives, would we have invented pesticides? and c) if lives were planned like gardens, would we have invented pesticides?

Bad Judgment: Letting The PD Gardener have the camera when his meds have worn off. Phota: S. Marshall

Bad Judgment: Letting The PD Gardener have the camera when his meds have worn off.       Photo: S. Marshall