Parkinson’s: Identity Crisis? Who? Me?

Preamble

I recently published a fairly blunt article, “Why I think  Parkinson’s is a Soul Sucking Disease.”  That article has had well in excess of 1,000 hits since December 1, 2017. I have also received numerous comments, mostly favourable, although some believe that I take an overly negative approach.  I am currently working on a follow up post tentatively entitled, “How I Live with Parkinson’s, a Soul Sucking Disease.”

In the course of researching this next post, it became evident to me once again that Persons with Parkinson’s (PwP) must come to grips with their relationship to Parkinson’s if we are to face the challenges effectively.  Do we accept it? Do we deny it? Is there some middle ground where our identity is not integrally related to Parkinson’s one way or the other?  On October 7, 2013 I considered these very questions in a post called, Parkinson’s: Identity Crisis? Who? Me? 

More than four years have passed and I remain so very much in sync with my thinking at that time that I re-post the article below as background reading for my forthcoming article, “How I Live with Parkinson’s, a  Soul Sucking Disease.”  

Encore post: Parkinson’s: Identity Crisis? Who? Me?  (originally published October 7, 2013)

Not surprisingly, upon discovering that I have Parkinson’s, I began a process of reassessing who I am.  Some might say I was having an identity crisis but I prefer to say that I was searching for the answer – with apologies to The Killers  http://www.youtube.com/watch?v=RIZdjT1472Y who sing

Are we human or are we dancer?

My sign is vital and my hands are cold

And I’m on my knees looking for the answer

Are we human or are we dancer?

This song has been bouncing around in my brain for some time. It is funny what you think about when you are gardening. Only I was singing (badly out loud, but perfectly in my head) alternately:  “Am I Parkinson’s or am I gardener?” Or “Am I human or am I Parkinson’s?” The third possibility, “Am I human or am I gardener?” was never really an option. Parkinson’s is part of the equation no matter how you look at it.

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Who fills those shoes under the hat? Photo: S. Marshall

I am not sure how far to proceed down this road as I see a huge warning sign that says “CAUTION: Sharp Turns, Philosophy ahead!”  So I will try to steer clear of homespun philosophy as much as I can (philosophers would delight in picking holes in my logic anyway,) and stick to the conundrum that Parkinson’s presented for my self-image. Oh oh, warning sign: “CAUTION: Foggy Patches, Sociology Ahead!”   

Like many others I suspect, I kept my diagnosis of Parkinson’s secret from most of my work colleagues, and most of the rest of the world. I told only a very few trusted colleagues, some close friends, and my family of course. I was not yet prepared to face life with the label “Person with Parkinson’s (PwP)” stamped on my forehead. At least that was how I perceived people would perceive me. [Why am I thinking of Charles Horton Cooley’s Looking Glass Self?] Anyway, this was probably moot as, in retrospect, my tremours were certainly noticeable to anyone who was half paying attention. Still, I felt that if I admitted to having Parkinson’s it would negatively affect work relationships and cast doubt upon my capabilities and capacity to do my job.

It wasn’t until I had formally announced my retirement with a firm date, that I began to process that I really do have Parkinson’s and it would (and will continue to) influence my self-identity. By the time of my retirement dinner, I didn’t really care if anyone knew and I began to speak more openly about it, and word began to slowly “leak out.” It was neither controlled nor orderly. I lost track of who knew and who didn’t. But my self-image and identity were in a state of anomie [Damn, what is Emile Durkheim doing in here?] Who was I? And what were the expectations?

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Does this False Spirea have an identity crisis? Photo: S.Marshall

I realize that we go through life playing many parts. Oh oh, “CAUTION: Overacting Possible, English Literature ahead!” Shakespeare penned this famous monologue in As You Like it around the turn of the 17th Century.

All the world’s a stage, And all the men and women merely players: They have their exits and their entrances; And one man in his time plays many parts …

Of course I have had many roles in my life – son, brother, husband, father, uncle, academic, teacher, colleague, activist, boss, to name only a very few.  The expectations for each role had to be learned and I performed some better than others.  As each role unfolds, it brings me closer to the grand finale. As Shakespeare concludes

… That ends this strange eventful history, Is second childishness and mere oblivion, sans teeth, sans eyes, sans taste, sans everything.

Wow!  That seems much too serious to contemplate at the moment. There can be no doubt that I will die – sometime – but I need to know the essence of my identity, and what informs that identity as I shuffle along that path.

Once my work persona began to recede and the inevitability of being a retiree crystalized in my brain, the realization that I am a PwP also took up permanent residence.  At this point I actually wanted to tell everyone I met, no matter how well I knew him or her, that I have Parkinson’s. “Hello, my name is Stan and I have Parkinson’s.” Or, “Hi Sarah, haven’t seen you for awhile. You know I have Parkinson’s eh?  I had to forbid myself deliberately from making it the initial and primary topic of conversation. It was taking over my consciousness while it was attempting to take over my body.

Strangely, it is a bit like your first love when you want to tell the whole world that you are in love – shout it from the rooftops as they say. Only, you can’t be in love with Parkinson’s, can you?  But, when it is such an integral part of your self, a part you cannot shed (at least not at the present time,) do you have no choice but to accept that you are Parkinson’s, and to love that reality? It is the only reality you have. (Whoa, I promised there would be no homespun philosophy here.)

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A beautiful rose for your lover. Rosa Morden Centennial (H.H. Marshall) Photo: S.Marshall

Many PwP perform heroic feats of human and physical endurance, or continue with productive and creative careers. They continue with a preexisting reality or create a new alternate reality. They are to be greatly admired as they raise awareness to Parkinson’s in ways that few others can. I often wonder if their self-identity is more closely tied to their pursuits or to Parkinson’s?  A question for another day as I cannot answer it.

For most of us, our expectations and goals are modest but vital to the condition of our existence. We know that physical exercise and proper nutrition are correlated to well being in a Parkinson’s body.  Making our bodies move in some way each day is a goal in and of itself, as is ensuring that we have proper nutrition. Maintaining an optimistic outlook, taking advantage of support groups within the Parkinson’s community, and seeking advice and treatment from an integrated team (ideally) of health and social services providers are all vital to our being able to slow the progression of this relentless disease and alleviate its symptoms. We do this ourselves, with our families and with our caregivers. It is a difficult road for most of us and we must be ‘comfortable within our own skins’ to meet the challenges.

OK, let’s cut to the chase.  And I truly believe what I am about to say. Without human complicity, Parkinson’s does not diminish the human soul; it does not diminish the joys or exacerbate the sorrows that we all feel in life; and it does not break the human spirit. In short, Parkinson’s is only greater than us when we let it be greater than us. But rest assured, it is ever a part of us.

For me this means I am human (although some may question this assertion.) I am Parkinson’s, as Parkinson’s is a condition of being human. And I am gardener, mostly by choice and environment, but a case could be made, given my family history, that there is a genetic component. (You know, the apple not falling far from the tree – OK, OK, that is resorting to cliché to make a point.)

So, why did it take so many words to get to this point? Because that is precisely how many words, no more and no less, it takes to reach this conclusion.

Or

As my father would say before he became “sans everything,” ”you get better results in the garden if you fertilize liberally with manure at the right times.

You decide.

Afterword

Just be thankful that I spared you a convoluted exegesis on ‘life’ as thesis, ‘Parkinson’s’ as antithesis and ‘living with Parkinson’s’ as synthesis, with apologies to Karl Marx. I also considered an examination of Id, Ego and Super ego with apologies to Sigmund Freud. Perhaps another time, eh?

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These monster sunflowers didn’t need any manure to grow out of control. Photo: S. Marshall

 

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

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)  

Parkinson’s, Old Men and Close Shaves or Lessons from the Barbershop

Having Parkinson’s disease has made me an “old man” before my time, I am afraid. [And I really am afraid but that is a topic for another time.] Bradykinesia has slowed my stride, altered my gait, and when Parkinson’s is in full attack, makes it painful for anyone to watch me execute even the most simple of movements. I recall being at a breakfast meeting a few years ago, well before any official (or even unofficial) diagnosis of PD, and I was struggling to locate and pull the tab on a small packet of peanut butter when the person sitting beside me (a colleague and a friend) reached over and said brusquely, “Oh for God’s sake, I can’t stand it, just give it to me. I’ll open it.” And she did. I was not offended as I really wanted the peanut butter and it was increasingly looking like I would not be successful in achieving that goal. Other simple things such as the act of pulling on one’s pants (trying to do that easily without losing your balance) are common challenges for us Parkies. I recall hurrying to pull on my tuxedo pants as we were getting ready for my retirement party, stumbling and pulling a hamstring severely enough to cause bruising. I spent most of the party limping around, trying not to admit that I hurt myself dressing! Strangely, getting one’s pants off does not seem to be an issue for me, for some reason. The old saying that “everyone puts their pants on one leg at a time” is meant to equalize the playing field i.e., we all equal at a basic level – except for Parkies, because we often put our pants on “no legs at a time” or “one leg forever at a time.”

Rolling over in bed is still another matter. Most Parkies have difficulty rolling over in bed. I know I did, and still do, so that is why I train and practice this skill in my sessions with my physiotherapists. I kid you not. Not being able to “skooch over” in bed used to drive me crazy and I would regularly complain to Anne, my wife, that I couldn’t believe I was getting so old that I was not able to roll over to get out of bed. At the time, we didn’t know that I had Parkinson’s and it is testament to her patience and understanding (and, I believe, her love for me) that she never actually threw me out of bed during those years. I have heard of other Parkies using silk sheets in order to make it easier to slide along in bed. Having never tried silk sheets, I am not sure if it works, and every time I raise it, Anne just rolls her eyes and says no. Is there some other connotation that I missing here? In any case, I have noticed that when I wear a t-shirt to bed it is much more difficult to roll over and/or reposition myself. Friction holding me back? Sleeping au naturel seems to be the solution, [OK, maybe that is too much information.]

I think I will dedicate a future post to delineating and elaborating on many of these early indicators of my Parkinson’s … but for now, I will only add that rigidity, inflexibility, and coordination challenges have made me less likely to move smoothly or to bend down gracefully to pick up any object from the floor or ground, and a loss of balance has made me walk more unsteadily than I have in the past. That, plus the indisputable fact that I actually am getting older, is culminating in my new persona of “old man.” Note: I hasten to add that my physiotherapists are working very diligently to delay this onset of “old age” and the progression of Parkinson’s, somewhat successfully I believe. I shall write about their heroic efforts in a later blog but for now suffice to say that “old age” is sometimes more of a title than it is a condition.

To illustrate, one of my daughters told me about 15 years ago that the kids on our street call me “old man Marshall,” bestowing upon me, at the then grand old age of 50, the same moniker that children in our village had bestowed on my own father when he was about 40 years old. Further, his initials were R. B. and he used them always, and specifically, to identify himself in any letter or official document. This struck others as unnecessary or maybe pretentious and so, consistent with the dictates of small town humour, he was equally referred to as “Rubber Boot” to elongate the R.B. to a full extension.

My father passed away a few years ago and among his effects were several straight razors, some barber’s scissors and a razor strap, carefully set aside for me by my sisters on the correct assumption that I would most likely want them more than they did. They had been stored at my sister’s place a few thousand kilometres from where I live. I had considered bringing them home with me when I visited a few years’ ago but figured it was not likely that I would be able to take five straight razors as carry-on baggage at the airport. And of course, I have had a full beard since 1969 so I wasn’t really desperate to put them into immediate use.

Some of my father's barbering tools  Photo: S. Marshall

Some of my father’s barbering tools Photo: S. Marshall

But these straight razors triggered a series of memories about shaving from my youth. No, these are not memories of me shaving but memories from long before I hit puberty. These memories include observing my maternal grandfather Bill and my father shave, both using straight razors. It was a fascinating experience for a 4 – or 5-year-old boy. Using a brush with brown and white bristles, grandfather would lather the shaving cream until it stood with stiff peaks like meringue my mother would make. Unfailingly he would plop a big daub on the end of my nose and I would laugh and wipe my nose furiously. Sometimes he would use the brush and apply cream to my soft, fuzzy plump cheeks using the dull side of the razor “to shave” my face. The whole process was both intriguing and spellbinding. Who needed television? … We didn’t have one anyway.

Our father worked for many years as a barber and “faced” a lot of bristles on the heads of many “old men” from our village and the surrounding farming community. And you haven’t lived until you have watched a barber’s scissors deftly enter the nostril of an 80-year-old farmer to trim a 2-inch (no metric in those days) long nose hair that has been waving with each heavy breath through a bulbous nose. By that measure then, I guess I have lived. My father’s fingers spread that nostril wide to ensure clean access to the hair without nipping nostril walls that resembled hillsides of clear-cut stumps.  As I was only four or five years old I had the perfect angle from the foot of the barber’s hydraulic chair to see clean up both nostrils. And, thank goodness, the nostrils were usually clean except for one or two long remaining fibres.

Snip – the harvest was complete – and the farmer’s lips formed a pucker reaching almost to the tip of his nose before giving way to the quivering walls of his nostrils and, at the same time, engaging the whole of his throat in a massive, loud, reflexive and reverberating response to the tickle of the withdrawal of the scissors. I learned to always jump back to avoid any wet fallout from this ticklish operation or any inadvertent kick from those manure-caked boots. [Hey look, sometimes they cleaned them, and sometimes they didn’t.]

A similar operation was performed on the ears, consigning any long protruding aerial hairs and accompanying shrubbery to the barber shop floor. The sunburned ears with their red veined road maps echoed those on the nose, and both shone in their newfound cleanliness and exposure. A quick trim of the eyebrows and part one of the Saturday night ritual was completed with a flap of the apron sending a cloud of hair and whiskers flying in every direction, and I scrambled to avoid being covered in icky itchiness.

With the hair, nose and ear jobs complete, my father would reattach the apron tightly around the farmer’s neck with a clip, lather up a brush on a cake of shaving soap in cup of warm water and proceed to cover the nape of the patron’s neck and his face with a thick coat of wet foam, being careful not to put too much under the nose to avoid having it sucked up into that enormous cavern. In retrospect I doubt whether anything white had ever been snorted up that nose … but I digress.  I note with interest that the extra-clean feel of a straight razor shave of the nape of the neck is a specific hot selling point in modern-day barbershops, and a straight razor shave of the beard is billed as superior tonsorial sensual splendour.

With lightning and frightening speed my father “stropped” the straight razor to an equally frightening sharpness before carefully pulling the skin to the correct tautness that begged to be shaved. My father gripped the razor in a seemingly awkward manner and proceeded to draw it across the skin on the left side of the farmer’s face, removing both shaving cream and whiskers, producing a distinctive “rasp” sound as the still wiry whiskers were cut as close to being under the skin as was physically possible. This was repeated on the right side of the face but with my father now gripping the razor in such a manner as to use an equally awkward-looking “back-handed” stroke until every square inch of the face and neck was harvested of hairs. The denouement included my father taking the farmer’s fleshy nose firmly between the thumb and forefinger of his left hand, squeezing it to close the air passages, and pulling it up into the snooty position deftly pulled the straight razor with his right hand down over the philtrum or infranasal depression – that little hollow leading down from the nose to the lip, risking calamity with each gentle stroke. Amazingly, the crevices and crevasses of the leathery face were now visible, free of any unwanted foliage. A hot, steamy towel was retrieved from a heated chrome and glass container and placed over the face, eliciting a sigh of relief from both the farmer … and my dad. A final splash of after shave was applied and the farmer was fit to return to active duty with his wife and family if he had them, and if not, then to the general two-legged and four-legged public with whom he customarily consorted.

Occasionally, the razor did not navigate the folds of the face and neck so cleanly and a spot of blood would appear after the razor’s pass. The bleeding was quickly staunched with a little rub of yellowish astringent powder kept in a small packet on a ledge underneath the mirror behind the chair. With any kind of luck the astringent was all that was necessary as the cut was not a slice but a “nick” in my father’s words. He was embarrassed when such events happened and it showed on his face especially as he turned the patron around in the chair and held a mirror behind so that the full 360-degree effect of the haircut, shave and ear/nose/eyebrow trimming could be viewed. Any little pieces of tissue stuck to the skin to staunch the flow of blood certainly detracted from the professionalism of the job. I recall this happening only two or three times in all the hours of my childhood watching. Still, I watched this work with the same fascination with which people watch reality TV today – hoping for a major mistake.

At the end of these ablutions, the old farmer fished 75 cents out of his rubber squeeze change purse, gave it to my father and thanked him, before rubbing my head with his strong earthy hands and heading out into the cool summer night air. This transaction was my very first exposure to commerce. The old saw “shave and a haircut, two bits” had already been supplanted by “shave and a haircut, six bits” due to inflation, I guess. Individually, the haircut was 45 cents and the shave was 30 cents. Children could get their haircut for 25 cents. This was my first exposure to commerce; and it was, I believe, also my first exposure to “price fixing.”

Have you ever wondered who cuts the barber’s hair in a one-horse town? The answer is: a barber from another one-horse town, of course. In this case, there were three one-horse towns lined up along Highway 23, each with its own barber. Ralph cut hair in Miami (no, not Florida) ‘Bose was the barber in Somerset (no, not England), and my dad barbered in Altamont (no, not California.) In the early years, and in line with all stereotypes, they each ran poolrooms in conjunction with the barbershop. On several occasions, I went with dad to see Ralph or ‘Bose whereupon they cut each other’s hair. Fair trade. However, on one occasion all three were present. Who cut whose hair I don’t recall, but there was discussion about the fair going rate for haircuts. In the car on the way home I learned that in my father’s shop a haircut had gone up in price from 40 cents to 45 cents and a shave had also risen by 5 cents to 35 cents. I have reason to believe that prices in neighbouring communities also increased accordingly, necessitated by changes in the economy and undoubtedly implemented by the “invisible hand of the market.”

Apparently, “old style” or “traditional” barbershops and the straight razor are making a return. I recently saw a local news report highlighting the delights of the close, clean shave of the straight razor, and the soothing, relaxing pampering of hot towels drawing every last bit of tension from your rediscovered baby bottom smooth cheeks. Of course, the cost to achieve this state of nirvana is much higher these days than it was in the mid-1950s. According to the price list of one establishment, a barber cut costs $22 (more if you have long hair.) If you want the full treatment the price increases exponentially: shampoo $8, traditional shave $37, neck shave $10, for a total cost of $77 plus tip. The rate of inflation in Canada from 1950 to 2015 is approximately 785%, or put more succinctly, an eighty-cent shave and a haircut in 1955 would cost $7.11 in 2015 if one considers the effect of inflation alone. I guess the remaining $70 represents value added improvement in technique, atmosphere and attentiveness – the so called “art and science” of the barbering experience. Price fixing or not, our father could never hope to earn a living barbering in the 1950s and 1960s, even as only one of a host of jobs he was doing simultaneously. He left the profession to pursue a more proletarian life as a stationery engineer in a pulp and paper mill.

My father would sometimes make house calls providing tonsorial services to several older gentlemen and ladies in and around the village. Before I was in school [school for us started only in Grade 1 as there was no such thing as kindergarten and I cannot help but think that I have suffered greatly over the years from that significant disadvantage,] I would sometimes accompany him on these visits usually made on Thursday afternoons when our village shops and businesses came to a halt, closed for a half-day’s rest. In many other communities, closing day was Monday but the merchants and business owners along Highway 23 had reached an agreement that a respite on Thursday afternoon was all that was necessary to ensure quality of life for themselves and their families. Of course, no one was open on Sundays as it was the Sabbath, the Lord’s Day of Prayer, and a day of rest to spend with family. But I digress and I shall post some observations on the historical underpinnings of the decline of the Sabbath in small towns at a future time.

While my father rarely violated the strictures of no work on Sundays except perhaps to work in our extensive vegetable gardens or to putter amongst the flower beds, he did allow that he could break the commercial standard on a Thursday afternoon to make a house call to provide a cooling haircut and/or soothing shave to an ailing gentleman who was no longer mobile enough to make the trek to the shop, or to make a senior lady feel more presentable, if not beautiful, by cutting her hair, providing a style or perhaps even a “perm.”

I enjoyed accompanying my father on these calls because not only did I get to see my father’s skill with the scissors and razor, but I got to see the inside of many houses where I would not otherwise be permitted to enter. I won’t bore you here with details of every visit I ever went on (I reserve the right to do that in a later post) but I will take this occasion to talk about one memorable one.

About one-half mile west of our village there was an abandoned farmhouse, probably one of the original homesteads in the area dating back to the 1890s. It looked like its occupants had either left in a hurry or left without means to take their belongings with them. As children, we would walk a gravel road to the point where we turned to tramp across a wheat field and into what was once a farmyard. The three requisite identifiers of any prairie farmyard were present – an out of control crowd of lilac shrubs, a patch of rhubarb and a row of daylilies (common ditch lilies.) Undoubtedly, it was a good house and home when it was built but now it was ramshackle to say the least and we entered gingerly not knowing what might befall us as we entered or, more precisely, what might fall on us as we entered. It had been a two-storey house but much of the second floor had now unceremoniously sagged and slipped onto the first floor. We poked at the hanging bits that looked most precarious to ascertain their structural integrity. Once a path had been determined, and once we convinced ourselves that there were no critters in residence, we entered into a time warp, into history, into the halcyon hay days of the1920s and then beyond, into the soul destroying dust of the “dirty thirties.” We were in amongst the old horsehair furniture – couches and chaise lounges with the leather now badly worn, torn, flea-eaten and weather-beaten. Successive seasons of sun, rain and snow had done its nasty handiwork and the grand times and comfort in those pieces of furniture had long since fled. We felt no urge to rest upon them.

"Lilies"  original painting by Anne F Marshall '95

“Lilies” original pastel by Anne F Marshall ’95

I suspect that anything of antique value, or heading in that direction, had long since been taken by remaining family members or antique scavengers who saw it as their right to enter any property that appeared abandoned and was not locked, to swiftly and silently carry away pieces as surely as crows or magpies scoop up shiny things never to be found again. In the kitchen we discovered that they had not yet realized the future value of old mason jars and there were many shelves … well many broken shelves, with mason jars of preserves still intact. I recall we often wondered whether said contents were edible, daring each other to have a taste. Thank goodness we all had sufficient brains (and cowardice) to resist such foolhardy taunts and not succumb to deadly bravado.

One summer afternoon, I accompanied my father out that way but we were not interested in this old house, surprisingly. Instead, dad turned the Austin Healy off the road a short distance to the east of it and travelled what I can only describe as a footpath – one that was not all that well travelled suggesting that few footfalls ever reached even this short distance from the highway, and even fewer vehicles left impressions of tire treads in the dirt. We proceeded, the grass brushing against the bottom of the car, until it’s sound sounded unsound – if you know what I mean. I was standing on the seat (no seat belts in those days remember) straining to see our destination as the car slowed to a halt. I peered through the windscreen and the dust (grass pollen, spores, dirt) and insects that our car had set flying and fleeing. It was a warm day, cicadas stinging the air, invisible in the trees. At first, my eyes could not adjust to the sharp contrast between light and shade in the sun’s glare, but my father pointed to a small shack, lurking in the deep shadows of the bush, with its distinctive weathered gray siding and shingles so typical of rural poverty. Its front door … well the only door … opened out of the shrubbery and onto the clearing. That was our destination. But who were we to see and why?

My father fetched a small hard – sided black box from the trunk of the car and I knew that a haircut and possibly a shave were in the offing. A sharp rap on the shack door brought the hairy mountain man out into the open. Without a doubt he had heard us approaching as a dog barked on the other side of the door, but he had chosen not to open the door until we summoned. This was the man that we all knew to be Dick Mussell, and I am certain that he was, indeed, Dick Mussell.

The Mussells were among the first settlers in the area and the first local Post Office was located at Mussellboro or Mussellborough in the very early days. According to “The High Mountain: A History of the Altamont, Manitoba District” written by Ms. Beula Swain, and dated September 1973, Mr. Henry Mussell was appointed postmaster at Mussellborough in 1884 and the Post Office was located in his house. I believe that Mussellborough was situated a mile of so east and about a half mile south of the present town site of Altamont. According to Ms. Swain, the Northern Pacific and Manitoba Railroad, built in 1889, cut through the hills just to the north of Mussellborough to Altamont where a water tower and a coal shed were built to provide sustenance for the steam locomotives, and a turning wye made it possible for the locomotives to be at the head of the train going each direction. Commerce, no doubt, shifted to Altamont to be close to the railroad, and the rest of Mussellborough went with it. Sadly, I don’t believe there is any marker, plaque or cairn to mark this historic now disappeared village.

Altamont train station circa 1953      Photo: unknown

Altamont train station circa 1953 Photo: unknown

The firemen on the steam locomotives quickly learned that their work was cut out for them as they pitched coal and wood into the boilers powering the locomotives up the steady grade from Morris to present day Miami, Manitoba and then up and over the two escarpments known as the Manitoba Escarpment (or Pembina Hills to some), the remnants of the shores of glacial Lake Agassiz. They would achieve the pinnacle, the highest point of land between Morris and Virden, approximately two miles west of Mussellborough, and upon cresting that ridge the trains began an easier downhill run to the western terminus at Virden, Manitoba.

The return trip east to Morris was easier but required great skill from the engineers to keep the cars from spilling their contents in a derailment if speed levels were not controlled. There were a few rail accidents when I was a child and crews would arrive and stay in Altamont, usually in bunk cars parked on the spur lines running past the grain elevators.   The section foreman who lived just on the eastern edge of town in a CNR-owned house, would be in charge of the clean up.

I do recall one incident that could have ended very badly, but didn’t. It was, however, an incident that exemplifies the truth that it was all-downhill from there, so to speak. Some empty grain cars were sitting on a spur line near the siding of Deerwood just east of Altamont.  The grade from Deerwood east was quite steep through the escarpments and it seems that a howling west wind was responsible for assisting two of these cars to begin journeys independent of any locomotion or human guidance. Perhaps the cars’ brakes were not applied properly through either human error or mechanical failure, and/or the time honoured tradition and requirement that a piece of wood be jammed under the leading edge wheels to prohibit forward movement was ignored, and/or the spur line had inadvertently remained connected to the mainline at the switch. The fact of the matter is that more than one of these possibilities had to be true for the cars to escape custody. [Given present-day rail “accidents”, I sometimes think that while the technology and the magnitude of rail traffic may have changed, not much has really changed in the internal logic of rail movement.] In any case, the two cars, aided by that strong west wind, began a slow creep down the grade. At some point a half-mile or so separated them, doubling the danger quotient of their movement. Slowly they gained momentum passing silently through farmland, before reaching speeds that sent them whistling through level crossings without the required blast of the train whistle, careening perilously around long corners of track snaking through the hills, passing unnoticed through the villages of Miami, Rosebank and Jordan before coasting to a stop somewhere on the other side of Roland, Manitoba.

One can only imagine the consternation of a grain elevator agent discovering that two grain cars had gone AWOL. What to do? Get on the phone, have the telephone operator issue a distress signal (one long continuous ring) on the party lines, calling on everyone to be on the lookout for strange rail cars sailing through their communities. Send a telegram to the CNR to let them know that it would not be wise to deploy any rolling stock on the main line until the rogue cars were back in captivity. Then, proceed along the track, from the uphill side (having learned the principle of gravity from your earliest experiences as a boy trying to pee uphill.) At some point you would catch up.

Today, Twitter, Facebook and other social media would not only have located the cars before the agent had noticed they were missing, but segments of video documenting their ‘hilarious’ ride through the escarpments and a cobbled together compilation would go viral within a few hours. Like storm chasers with cell phones on hands – free, crazy people would monitor sighting reports and speed across the prairie on dusty and rarely travelled back roads hoping to capture that one moment that would make them famous – that moment when they were able to warn someone in imminent danger just in time to save their lives – or, sadly, but maybe better still for fame and notoriety, that moment when several tonnes of rail rolling stock crashes into a busload of corporate sales representatives on a tour organized by a major chemical company showcasing fields treated with 2-4-D or DDT.

In truth, and gladly, the end result was newsworthy only for being uneventful and for the fact that the cars had escaped at all. For me, it was yet further proof of just how sparse the population is across that part of the prairie, and proof that Altamont really was on higher ground. You see, settlers in this area were known to have settled on “The Mountain” and there is documentation that mail was actually addressed to them with that locator. It all seems rather amusing now as, if you know that area of Manitoba, mountains are a creature of “relativity” at best and if you had ever seen the Rockies or even the Laurentians, the idea that there was a mountain anywhere close to Altamont would seem ludicrous. Be that as it may, Altamont was so named because of its location on the mountain.

It is only fitting then that the “high mountain” should have a “mountain man” and Dick Mussell was larger than life to me and seemed to fit that bill. I can only assume that Dick was part of the Mussellborough Mussell lineage and at some point in his life had opted for an alternative lifestyle. On the day dad and I went to visit he sported a long beard with turbulent rivers of gray and white, and the hair on his head was matted like an unshorn sheep. His attire was early coveralls, not the height of fashion.

Dick would venture into town every few weeks on a Saturday to purchase supplies including a sack of flour, some bacon and beans, a few hard candies, and to imbibe some refreshment at the local hotel. It was a men’s only hotel in those days, as women had not yet attained that exalted status of patron of the bar. Without fail a rifle of some sort accompanied Dick. It may have been a .22 calibre but I believe it was often a .30-30 or perhaps a .30 – 06 (thirty ought six as my father would say.) If I proceed with any further descriptions, someone more knowledgeable will cringe and call me to task. Suffice to say that it makes an impression on a small boy when a mountain man complete with a rifle moves into his orbit. I don’t think I had ever seen a rifle before, or a mountain man for that matter.

Even today, I know nothing of guns, as we never had any in our house, although my uncle on the farm had several and knew how to use them. I have personally witnessed the shotgun deaths of several magpies, largely seen as unwanted pests on farms. Other than that, Chuck Connors and The Rifleman is my main frame of reference and, when I was a boy, I could only watch him occasionally on Orville’s TV – the only one in town.

After a few hours in the hotel at the opposite end of town from his shack, Dick would make his way back along the row of stores collecting his purchases along the way. He would then set out on his horse, Queen, who was able to navigate the way back to Dick’s shack no matter the condition of its rider. Things were not always smooth for Dick. Sometimes the older boys would taunt and tease him. He largely ignored them or shot them a frightening caries filled smile. I remember just trying to stay out of the way but also trying to observe everything I possibly could from some safe haven – perhaps from behind the cattle salt blocks in one of the two general stores … we never resisted having a salty lick or two while we were there.

On one Sunday morning, I awoke to an animated conversation between my parents about how there was blood on the sidewalk in front of the restaurant that my parent’s owned. Later I checked and sure enough, there was enough blood to be noticeable but not enough to make anyone overly alarmed. How did it come to be there? And what did it mean? I guess it could have been blood from a kid falling off a bicycle and landing on his/her head precipitating a scalp wound, bleeding “like a stuck pig” as we used to say. But the tenor of the conversation between my parents gave the lie to that notion. Apparently, it was human blood and something nefarious had happened.

When I asked my dad about it, he allowed that there likely had been a botched attempt at robbery. (There were many other robberies in our town in later years and I will deal with them in due course in future posts.) Apparently, one of the teen boys (girls don’t do this stuff,) let’s call him JBG, attempted to bushwhack Dick in highwayman fashion as he was making his way to his shack, believing that Dick was too drunk to defend himself or to know what was happening. I am not sure why JBG thought he could, or should, steal from a mountain man with a gun but for some reason he hadn’t counted on the fact that Dick had a rifle, knew how to use it and use it he did. At a half mile from town, in the late evening, a gunshot would not have registered on anyone’s ears as being trouble.

My father and I in front of restaurant, barbershop and poollhall circa 1953   Photo: unknown

My father and me in front of restaurant, barbershop and pool hall circa 1953                  Photo: unknown

Late Saturday evening just before closing, JBG showed up at our restaurant asking for a bandage to dress a wound to his lower leg and shin – a wound which JBG claimed was self-inflicted, the result of a screwdriver slipping as he attempted to repair an old car. It was serious enough for blood to form a small puddle on the sidewalk. From the way my father was talking to my mother, it was clear that he did not believe JBG’s story but assisted him with immediate necessary first aid, and advised him to seek further medical treatment. I am not in a position to know if JBG did, or if he didn’t, seek that assistance. As the nearest doctor was 8 miles away and the nearest hospital was 13 miles away, I tend to think he did not.

As for Dick, he had no advantage to be gained from reporting this incident to the police. It is likely he just wanted to keep his solitary existence … well … solitary. I doubt if there was an RCMP investigation (they patrolled rural areas in the province) but how would I know for sure? I was far too young to have been questioned as a suspect and I had witnessed nothing first hand.

For as long as I can remember there was speculation that the old bachelor “gentlemen” in town had thousands of dollars hidden in their shacks – for they all lived in shacks – under the floor boards, in tobacco cans, wrapped in wax paper, buried in dirt cellars, or even sunk into the human excrement under their one- or two-hole outhouses located behind their premises. [The concept of a three-hole outhouse is just hilarious but I have seen a few in my lifetime.] So maybe it is not surprising that Dick became a target.

But let’s return to the particular visit my dad and I made to Dick’s cabin. There had always been lots of rumours about Dick and how he lived. As is often the case there is a kernel of truth in most rumours, but not the whole truth in any of them. There was no well near the shack and no running water save for a small creek flowing a few hundred yards to the downhill side. While the inside of the shack was tidy enough at first glance, the methodology for such tidiness would not have found favour in any book of etiquette or in the Ladies’ Home Journal so popular at the time.

A cast iron skillet, a tin plate and a couple of eating utensils were neatly tucked up on the far side of a small potbellied stove – a perfect spot for the resident dog to lick scraps and grease until the skillet and plate shone ‘clean.’ My father made specific mention of this dishwashing method as we walked back to the car. As I think back on it, the dog did seem to be partial to a spot on the floor where his nose was not too distant from that skillet and plate.

It was rumoured that Dick never bathed. I did not see anything in that one room shack that resembled a bathtub or a place where even a sponge bath could be taken. Now, to be fair, at that time, our own house in town did not have running water but we always had a space where there was a tub that would be filled with water heated on the stove. Dick did not look or smell like he had bathed recently. Perhaps, he washed in the creek? A second part of this particular rumour was that Dick never took off his underwear and that his body hair grew right through the cloth forming a complex knitted interlacing of protection from the severe cold of the winter. It was accepted as fact that once when Dick had to be admitted to hospital for some emergency surgery, his clothes had to be cut from his body for that very reason.  But this was early summer. Surely, he would take off his clothes now. But the logic of rumours is often … well … not logical. I had heard others, not just children but adults as well, say that he never ever took off his clothes and made sure that he had his “long John’s” on 24/7 as he believed that “if it keeps the cold out in the winter, it keeps the heat out in the summer.” If one thinks about insulation, one might concede that there could be a kernel of truth in this logic. I am just not sure that the experience of wearing several layers of clothing, all day, every day, such that it became part of your skin, was one that the human psyche could tolerate and resist the natural temptation to rip it off and run free, naked and clean!

Dick did come into town one time wearing full white long john underwear on top of his other clothes. The explanation at the time was that it was hunting season and he didn’t want some city slicker or other idiot (note the logic here: not all idiots were city slickers but all city slickers were idiots) mistaking him for a deer and taking a pot shot at him. He reasoned that white would make him very visible. I know that blaze orange is the current regulatory requirement for hunter camouflage but I am unsure as to whether that was always the case. Perhaps, it used to be white?

Which brings me to another rumour about Dick – that he always was naked inside his shack. Surely this contradicts the first rumour that Dick never took his clothes off! I am not aware of any evidence that the nakedness rumour was… well … the naked truth. Besides, if you can’t be naked inside your own home, where can you be naked? And what is wrong with that? He was most certainly clothed when my father and I visited him but perhaps he was expecting us. In retrospect, there are often untrue rumours about people and situations that are out of the ordinary and Dick clearly had chosen a lifestyle that eschewed the conveniences of modern life, such as it was, in the mid-twentieth century. It may also be the case that the stories were carefully crafted and perpetuated by older generations to illustrate the folly of not following a good, clean, family (if not Christian) life. In other words, ‘bathe and change your underwear or you will end up like Dick Mussel.’ The stories may also have been a way to ensure that we children did not bother the mountain man avoiding any dangers or misunderstandings. The mere thought of seeing a naked Dick in his shack was a fearsome thing and enough to keep us well away. Hmmm … okay, I am taking too many liberties here. I apologize. Suffice to say, there is much sociology already written about the role of rumours in the social construction of reality in everyday life. [Maybe it is time for me to do some serious research and writing on this matter – but not right now.]

In order to properly carry out the required barbering duties, my father suggests that we take a chair outside for better light and asks Dick to heat some water on the stove. There was a small fire going already, making the shack feel a bit like a steamy sauna on an already quite warm early afternoon. Scissors, combs, brushes and razors were revealed upon opening the travel kit. I don’t really remember much about the haircut or the shave, other than a considerable amount of head and facial hair hit the ground revealing the countenance of a hitherto unseen man. There must have been some particular reason for his desire to approach being respectable in appearance but I don’t know what it was. Perhaps, it was merely an annual summer haircut and shave – whether he needed it or not, as my father always said. Funny, but I find myself repeating that saying each time Anne attacks my hair and I trim my beard after an extended period of tonsorial abstinence. Or perhaps there was a funeral to which Dick felt obliged to attend, putting his best face forward.

I have no reason to believe that the Dick Mussell that my father released from the forest of hair was ‘new and improved’ but I am certain that his appearance was drastically changed. Clean and tidy, he probably no longer carried the mysterious aura of a “mountain man.” But for some strange reason, I don’t really remember the details of his clean shaved face and neat haircut at all, nor any of his defining features. I can only surmise that his shorn persona blended into that mass of male respectability that I have known for the majority of my life. In short, while you would think that his new visage would be the one I remember the most vividly, it isn’t. Rather, I remember friendly eyes shining through the shock of hair that extended seamlessly, but wildly, around his head before his hair was cut.

Is there any kindness in these eyes?

He was supposed to be the mountain man, a frightening example of someone who not only lived an unconventional lifestyle, but one who also personified the words ‘dirty’ and ‘unkempt.’ The word amongst the boys of the village was that everything at Dick’s place smelled like … well … smelled like smells we seldom smelled … the pungency of a wet dog after rolling in fresh manure combined with the eye watering acridity of wood smoke … the appetite repelling stench of meat left too long out of refrigeration … the stomach churning fetor of an abattoir …. Interestingly, I don’t remember any of these smells. Perhaps, Parkinson’s had already seized the olfactory functions of my neurological system? Not likely.

What I do remember is that the furnishings of Dick’s shack were minimalist, rustic, made from available materials, but cosy nonetheless. There was some small talk between Dick and my father but I was focussed on the dog that seemed to be eyeing me warily as I approached. Dick muttered something that was unintelligible to me but caused the dog to settle noticeably as he and I climb on a horsehide throw and several rag quilts that cover what passes for Dick’s bed and living area. It was strangely comforting to be enveloped by the smells of horse, dog, and mountain man and, dare I say, human kindness. It was not an act of human kindness but the smell of human kindness. I am certain that my mother would never understand but in that moment I became less fearful of the fearsome.

Having said all of this, I have to confess that to this day I have little knowledge of the true character of Dick Mussell. What I have told you is as seen through the eyes, heard through the ears, smelled through the nose, and recorded in the brain of a five-year-old child. Dick may well have been a despicable character who deserves condemnation but I have no experience or evidence to suggest that to be true.

I have no recollection of dad ever returning to the shack again to cut Dick’s hair. Somewhat selfishly, I sometimes like to think that the reason for our visit was to impress upon me not to be too quick to judge those with whom I am not familiar; not to let rumour, innuendo and prejudice jaundice my views; to be receptive always to new information and experiences in the formulation of my opinions; and to be charitable in both thought and deed. Have I lived my life by these lessons? No, not always, but it is a good touchstone upon which to ground oneself.

As important as this lesson was, there is another, perhaps even more important practical lesson. Although there was some unintentional bloodletting in the barber chair from the occasional “nick” of the straight razor, I never witnessed anything more serious. But many times in my early childhood my father expounded upon the historical place of barbers in what passed as “medicine” in early days. He would wax on, almost as if he had personal experience, about various medical ‘procedures’ that barbers performed. The red and white barber pole was, after all, symbolic of blood and bandages in a procedure known as “bloodletting” performed by barbers to heal the sick. He often mentioned that barbers used leeches to draw “bad blood” from their clients. I still cringe at the thought of the leeches that used to cling to our legs, arms and torsos when we would swim in the Boyne River or in the pools of the creek at Babcock’s. (Note that leeches are still used in modern medicine to assist in healing wounds.) I wonder if my father didn’t secretly wish he lived in that era so that he could use his barbering implements to full effect. Or perhaps with different opportunities, he would have become a surgeon rather than a barber? Or maybe he would have become a quack doctor … or worse yet, a quack barber? Who knows?

I do know that straight razors are wickedly sharp, lethal, frightening and to be used with extreme caution only by those who are experienced and skilled in the tonsorial arts. I actually have never used one to shave myself nor have I had a straight razor shave of my facial hair. My closest experience is a shave of the nape of my neck that all the old style barbers in the 1970s included in the regular haircut package. Given that I have had a full beard almost continually since about 1970 when I was 21 years old, I have pretty much self-selected myself out of the enjoyment of the adrenalin rush precipitated by a blade so sharp that it shears your whiskers as near to being under the skin as possible such that your skin does not register its passing except as a cooling breeze.

Of course, I am quite certain that any notion that I should take up shaving with a straight razor is now out of the question, and will send ripples of dread up and down the collective spines of those who know me. I can’t think of anything more potentially chillingly calamitous than a Parkie honing a blade to terrifying sharpness with the intent to draw that blade across one’s face and neck just a skin’s width away from one’s jugular. Have no fear; it is not in my plan, straight razor or no, to shave … ever again.

Ooops!   Photo: S Marshall

Ooops! Photo: S Marshall

Parkinson’s and the Gardener’s Shadow

Every year about this time, I begin to look out at the frozen tundra of our garden and wimper, “everything’s dead ….”

 

"Everything's dead ..." Photo: S. Marshall

“Everything’s dead … ” Photo: S. Marshall

But the magic always returns in the spring with snowdrops and crocus shoots emerging even before the snow and ice have fully receded. I marvel at the resilience of the flora that survives in the Ottawa Valley.  In the gardening parlance of plant hardiness zones, we are mostly in zone 3 but plants hardy to zone 4 and 5 often survive in specific microclimates. 

I don’t know why I am surprised, because I grew up in the even harsher climate of the Manitoba prairie where zone 2 would be the order of the day with some zone 3 locations.  And my family in The Pas, Manitoba and Humboldt, Saskatchewan (in sub-arctic zones) would snort at any suggestion that the Ottawa climate is “harsh” compared to what they live through.  Nevertheless, they do try to rationalize their choice to continue living in such a climate by citing the old saw that theirs is a “dry” cold, and therefore they are not really that cold.  However, anyway you slice it, the mean annual temperature of The Pas – 0.3 C (31.5 F) compared to Ottawa 6 C (42.8 F) tells the story.  Ottawa is cold and The Pas is damn cold – ‘nuff said.

It is small wonder that humans have spent considerable effort to overcome their environment by developing a variety of shelter options and energy uses to provide protection from the cold, and heat in other parts of the world. Of course, there is considerable evidence that we have not been effective stewards of planet earth in our efforts to protect the very environment we are protecting ourselves from, so to speak. I will not address that issue today but, rest assured, it will return to these pages in the future. It is too important to ignore.

There are many who would avow that nature should always be allowed to take her own course without human intervention.  Of course, this idea, unfettered and taken at its extreme, cannot be achieved. It would mean that humans could never intervene in the course of nature in order to better the human condition, or indeed to survive. Humans have always sought to “tame” nature, to “overcome” nature, to “improve upon” nature, to “protect” them from nature’s wrath as well as to “benefit” from nature’s bounty. 

There are countless theses and dissertations written in disciplines as varied as engineering, philosophy, environmental science, sociology, psychology, architecture, and literature to name but a few, exploring the relationship that humans have with nature. I don’t plan to engage in an academic exercise of outlining all of the issues and conducting some sort of meta-analysis by formulating hypotheses and reaching conclusions – believe me, I am as thankful for this as you are. My observations are, as usual, anecdotal and unscientific but hopefully thought provoking.  

It is important to understand that the gardener always will tinker in the garden and always will intervene to alter the course of nature, sometimes for the better and sometimes for the worse. And sometimes just to show that we can. It was reported recently that a man in Chidham, West Sussex in the UK has successfully grafted 250 varieties of apples onto one tree over the course of some 24 years. Don’t believe me? Google it.  

Upon reading that account, I was reminded of my watching, as a young child, my paternal grandfather (Bob) grafting what seemed to me to be twigs onto various types of trees in his orchard.  He meticulously demonstrated how to prune the spear being grafted at a precise angle to be inserted into an incision in a branch of the receiving tree. It would be bound with twine or a piece of bark and covered with a type of rooting hormone and gum to cover the tender incision.  I am told he was successful in grafting more tender varieties of apples onto hardier rootstock and even produced some apricots in a climate not favourable to such tender fruits in southern Manitoba.

That is a fine memory indeed but do you know what I really remember?  I remember my grandfather’s hands as he manipulated his old pocketknife (sharpened on a foot powered treadle grinder in the farm shop) in a gentle but firm procedure. I remember his thick thumbs and fingers, seemingly incapable of such dexterity, being more than adequate to slip the young scion into the incision for the graft. Those fingers had often used that same pocketknife to cut a slice of apple, proffered to me with pride, from one of the many varieties grown in the orchard on his farm. And amazingly, even though Parkinson’s has diminished my sense of smell considerably, the crisp scent of that apple still tingles in my olfactory lobe. Tart and clean.

Not even sure what kind of apples these are.  Must get my pocket knife. Photo: S.Marshall

Not even sure what kind of apples these are. Must get my pocket knife. Photo: S.Marshall

But more than that, I remember those same thumbs and fingers on my father’s hands as he tended his flowers and vegetables in Manitoba and Saskatchewan. A short growing season, but loam rich soil and many hours of sunshine made for a fast transition from spring planting to fall harvest. Dad also had a pocketknife which he used to cut into various fruits and seeds in his efforts to provide an education on gardening (if not horticulture) to a mostly unreceptive teenager – me. I watched his hands grow old in the garden, in his workshop, and in his efforts to keep his mind sharp by filling out every crossword and Sudoku puzzle he could find, in pen. 

Today, I look down to see those same thumbs and fingers on my own hands as I deadhead spent flowers, root out troublesome weeds, and dig with an old spade to move, remove, or replace various perennials. But there is no pocketknife in my hands. The era of security checks at airports have diminished their numbers, although I am pretty sure that I have one or two tucked away in my ‘odds and sods’ drawers (yes, more than one drawer.) However, unlike my father’s or grandfather’s, my hands often shake and my fingers fumble to meet the task at hand. Parkinson’s is never far away if it is not immediately present.

But I am not disturbed by my inadequacies. Rather, I am heartened that I had the great fortune to witness those hands fly across three generations with a destiny to toil in a vocation (for my grandfather) and an avocation (for my father and me) to assist nature in creating beauty, joy and satisfaction.

Humans have long put their own stamp on ‘gardens,’ witness the many and varied formal and informal garden types neatly categorized within a nationalist typology: English, French, Japanese, Dutch, Korean, Spanish, Persian, Chinese, Italian, etc. All are created with plants and hardscape endemic to their namesake nations, if not to their immediate environs. But most have unmistakable human influences that, while artificial, are evidence of efforts to “improve” upon nature. I was reminded of this during a short walk we took recently in the Gatineau Hills north of Ottawa.

William Lyon Mackenzie King was Prime Minister of Canada for a remarkable 22 years in total during the years 1921 – 1948 and developed a country retreat at Kingsmere north of Ottawa in Quebec. He bequeathed that estate to the people of Canada and, among other things, the public is welcome to view his attempts at creating “ruins” on the property. He salvaged portions of buildings and landmarks being demolished in Ottawa and relocated them to Kingsmere. It is widely known that Mackenzie King was quirky to say the least, and some may think that these “ruins” are folly but most visitors would likely agree that they are creative enhancements to nature’s already established beauty.

Does this ruin the View? Photo: S. Marshall

Does this ruin the view? Photo: S. Marshall

Still, anyone who gardens knows that nature is not always beneficent and we sometimes intervene deliberately with the intention of altering the trajectory of a phenomenon that is harmful. On a very small scale, I am trying to root out some very invasive vinca minor (periwinkle) that is threatening to take over and choke an entire bed of hostas and other innocent victims. Periwinkle, in its place, is a very fine, hardy ground cover that can thrive in considerable shade and has a lovely, small flower (periwinkle of course.) Unchecked, it wants to take over the world.

Vinca minor (periwinkle) would like to take over the world. Photo: S. Marshall

Vinca minor (periwinkle) would like to take over the world. Photo: S. Marshall

Whether I like it or not, I have Parkinson’s Disease, a natural phenomenon with no known cure. It is neurologically invasive.  Many organizations are working diligently and relentlessly to fund and conduct scientific research to achieve a cure. Success would mean a monumental change in the course of history for millions of Persons with Parkinson’s (PwP) and their families, and for those who are at risk for Parkinson’s. I do not expect to benefit personally from this work. The time frame is too short; the disease is too advanced. No matter, it is critical to continue to pursue a cure. Scientists, Parkinson’s support groups, fundraising organizations, fundraisers, caregivers, family members of PwP, individuals and philanthropists are all in agreement that a cure is our primary goal. But there are at least three corollary ‘meantimes.’

In the first ‘meantime’, we continue to use the gold standard of levodopa along with an array of other pharmaceuticals to keep the disease in check and to help us remain upright in a never-ending struggle to defy the inevitable.  Chemical assistance works to a certain degree but there are long-term and short-term side effects, and drugs do wear off. 

In the second ‘meantime’ we pursue strategies to alter the functioning of the brain.  For example, Deep Brain Stimulation (DBS) is an invasive brain surgery that has brought relief to many PwP.  I am privileged to have met someone recently who had DBS although at the time of this writing he has yet to have the stimulus unit fine-tuned to its final settings. Nevertheless, it is a pleasure to witness the improvement in his tremor even without the full effect. It was also a pleasure to witness the genuine excitement and relief that he and his spouse exhibited throughout a lengthy process of being accepted, having the surgery, and in the immediate post-surgery period. I am confident that the next time we meet they will be wildly satisfied with the outcome.

There is also hope that a newer, less invasive ultrasound brain procedure will be as effective as DBS by focusing ultrasound waves on a specific part of the brain killing the cells causing the tremor. This procedure requires neither invasive surgery nor a general anesthetic and holds great promise to alleviate some symptoms and provide a much improved quality of life for PwP and their families. 

I am under no illusion that DBS or ultrasound is a “cure.” They are not. Some of the more problematic characteristics of Parkinson’s are decreased but not totally eliminated.  Most patients receiving the treatment still require drugs such as levodopa but usually in much reduced quantities. DBS or ultrasound is not for everyone. In my own case, I do have considerable tremour when the medication wears off but my major concern is cramping and pain in my legs and feet. I am not sure that these can be changed through these procedures.

Other research seeking to unlock the genetic code of PD is underway and may well lead to the discovery of ‘markers’ allowing for earlier identification and treatment. All scientific research must continue.

It would be an understatement to say that PwP, families and caregivers are praying that a cure can be found. Those of us in our mid-sixties or older know the likelihood of a cure within our lifetimes is exceedingly slim. Perhaps those with early onset Parkinson’s will see the development of a cure. Realistically, that would be my greatest wish and the best possible outcome.

In the third ‘meantime’, we must focus on other measures such as exercise to delay the progression of Parkinson’s and to alleviate some of its immediate effects.  The October 2013 World Parkinson’s Congress in Montreal brought together research scientists, physicians, PwP and their families, caregivers, therapists, health and social work professions, health policy analysts, fundraising organizations, advocates, and many others from around the world to inform, discuss, analyze and make recommendations.  I did not attend but followed the congress on various websites and Twitter postings.

At the time I did not know many PwP personally but still the excitement about the Congress was palpable, driven by a sense that all players in the Parkinson’s equation would meet on common ground to share critical information to make a quantum leap towards enhanced quality of life for PwP and their families, and a cure.

The concept of exercise – moving our bodies in some deliberate physical manner for at least 30 minutes each day – was pervasive at the Congress. It is beneficial to those facing a wide variety of physical and mental illnesses. Parkinson’s is one of those.  I am not fooling myself into thinking that exercise can cure any disease but it appears that its greatest benefit is to delay the progression of some of the most problematic symptoms e.g., rigidity, stiffness, slowing of gait, feelings of weakness, imbalance, etc.  As long as these can be delayed, changed, or improved, exercise is a good prescription. There is even a very good campaign in the UK to have physicians prescribe exercise as per guidance issued to the National Health Service by the UK National Institute of Health and Care Excellence. (See Exercise Works! http://www.exercise-works.org/.)

Exercise for PwP can take a wide variety of forms with walking, Nordic pole walking, cycling, running, x-country skiing, downhill skiing, snowshoeing, aerobic exercises, rowing, Pilates, yoga, dance, Tai Chi, and boxing being among the most popular.  The National Ballet School in Canada and the Mark Morris Dance Group for PD in New York have specific ballet and dance classes for PwP.  Each type of exercise has its adherents and specific selling points – cardiovascular, flexibility, balance, strength, concentration, etc.  Nevertheless, they are all in agreement, exercise is critical to physical and mental health in PD and to delaying the disease.  (Nevertheless, Anne and I do have a good chortle when we imagine me doing arabesques or pirouettes. Don’t underestimate the importance of laughter in the medicine cabinet.)

Rather than ballet, I have been developing a regimen of cardiovascular training using a NordicTrack machine, some light weight training with free weights, along with aggressive gardening (attacking weeds and invasive plants with vigour.)  Coupled with good nutrition and eating habits, I lost over 35 pounds since January 2013 and I feel better. Or at least I did until recently when I seem to have developed some issues with sciatica and/or right hip. My neurologist is clear it is not PD related so I continue to explore the problem with other doctors. This new development, while somewhat painful, has me very much frustrated that I am not able to continue my regular exercise routine. I take this frustration to be further anecdotal proof of the thesis that exercise is beneficial as it has a negative consequence when withdrawn. I am currently awaiting results from x-rays and will be seeking further medical attention in the coming weeks.  Stay tuned.  

You know, I have always thought that I was ‘progressive’ but I didn’t really want to have progressive aging along with a progressive neurodegenerative disease – both incurable by the way.  In any case, it is sometimes difficult to discern which symptoms are related to PD and which are just related to getting older. PD itself is a series of ups and downs, good days and bad days. Growing old just adds to the fun! Ain’t life just peachy that way?

I once told a student that he should always write something to signal that his paper has a conclusion, or is coming to a conclusion. His next paper succinctly intoned: “Here comes the end.” So, take heart, the end (of this post only!) is near.

Today, we have drifted perilously close to some heated philosophical debates about humans and nature without having ventured so near as to melt our wings. We will need those wings for other flights into the worlds of Parkinson’s and gardens, as they do meet regularly but mysteriously.

Just as every gardener casts a long shadow and a watchful eye over the garden in the belief that we can improve on nature, every person touched by Parkinson’s tries to cast a shadow over this hated disease to alter its natural course.

I leave you with these questions: Can humans partner with Nature on an equal basis to create beauty? Can humans win the struggle with Nature to eradicate the ugly?

The gardener's shadow is omnipresent. Photo: S. Marshall

The gardener’s shadow is omnipresent. Photo: S. Marshall

 

Going Home with Parkinson’s: Always a few surprises

 

When I was a teenager, we had a silly saying that went as follows: So I said to myself, “Self, don’t go away. But I turned around and there I was, gone.” I make no claim as to its origin but it seems to demark some sense of searching for identity, or more appropriately, a sense that our identities were rapidly changing and no sooner had we latched onto the latest version than it was gone.  Gardens are a bit that way actually, ever changing over the seasons.

Please garden: don't go away Photo: S. Marshall

Please garden: don’t go away.   Photo: S. Marshall

My last post was largely about searching for an identity in a new Parkinson’s body and the saying would have been apt to describe that process. However, this post is largely about dealing with Parkinson’s on a day-to-day basis while revisiting an identity that I have been shedding for about ten months.  

I am a retired staff from the Canadian Union of Public Employees (CUPE). I will not bore you with all of my tasks and responsibilities, as I don’t believe they are germane to this post. Suffice it to say that I was employed in several senior positions for almost 24 years. It is impossible for the work, and more importantly, the people, to have not influenced almost every aspect of my persona.

This influence was brought into sharp relief recently when my wife, Anne, and I attended the 50th anniversary convention of CUPE in Quebec City.  CUPE has a wonderful practice of inviting those who retired after last convention to attend the next convention. This gracious gesture acknowledges the contributions of the recent retiree, permits the retiree to meet and greet colleagues both old and new, and allows the retiree to witness the formulation of new policy and practice as the union moves forward. Don’t worry; I will not bore you with policy decisions and debates, although I am sure they would be interesting to some, and infuriating to others.

Over 2500 delegates and staff. How many will have to deal with PD in future? Photo: S. Marshall

Over 2500 delegates and staff.  How many will have to deal with PD in their lifetimes?  Photo: S. Marshall

I didn’t know what to expect as we made our way to Quebec City. On the one hand, I was excited with eager anticipation to see members and staff who were so integral to the mission of the union.  I had worked closely with thousands of them. On the other hand, as the kilometers clicked away on the train, I had a sense of trepidation.  I would be meeting many people, for the first time, as a Person with Parkinsons (PwP). How would they react – hell, how would I react? I was not concerned about my own mental state as I indicated in my last post, I have largely come to grips with Parkinson’s and my identity. I was more concerned about how my Parkinson’s body would react? Would I be able to control my temours so that I didn’t look like my legs were going to fall out from underneath me?  Would the pain debilitate me at inappropriate times such that I would regret being in the presence of others? I did not want to appear frail and weak. Would I have the stamina required to do all of the things I wanted to do? I just didn’t know what would happen.

I was right to be concerned about the tremours, the pain and the fatigue. They did cause some problems throughout the five-day meeting. Because I am now in touch with the rhythms of my body in ways I had never been before, I tried to prepare ahead of time.  Foolishly, I did not consider the obvious: convention carries on all day and into the evenings with forums, rallies, and other events, as well as dinners out with friends. And Quebec City has such great restaurants with remarkable cuisine.  In short, convention is a 12 – 13 hour endeavor each and every day for those who want to absorb everything.  Non-PwP are thrilled by this prospect and often work and/or party late into the night, extending the hours even further. Ah, I remember my own staff days “fondly” where it was not unusual to work 18 hours each day during convention.

But this time, I made a personal commitment to engage in at least 30 minutes of cardiovascular exercise each day, and I found myself in unfamiliar territory as a PwP. The hotel had a gym and the first two days I hit the treadmill early so as to be at convention on time. However, I failed to consider that it takes about 1½ hours after waking for my L-dopa to kick in. This meant that those early gym dates were particularly tiring.  This was compounded by a departure from my strict adherence to nutrition that maximizes PwP performance of daily activities (a long way of saying that those restaurants are really fantastic with multi-course meals, wine and desserts.) I guess I shouldn’t have been surprised that fatigue caught up to me quickly and I couldn’t sustain the pace. To make a long story short, I opted to forgo evening sessions and late dinners for the last three days and I no longer went to the gym but I did walk on one other day. (Please note: I returned to a strict regimen of exercise and proper diet upon returning home.)

When fatigue catches up to me I walk slowly and with great effort. I am usually in pain and I have strange muscle and nerve sensations in my legs and feet, and have noticeable tremour in my left leg. Even in casual situations such as a dinner with friends, my left leg shakes and I have muscle cramping and pain. I used to think it was some form of stress that caused this but now I am convinced it is “stimulus” that is the trigger. Whenever my mental senses are heightened, the symptoms are exacerbated. It is important to note that this does not apply during physical exercise which seems to override the mental stimulus. Sorry, I seem to have lapsed into some musing on a subject about which I am not qualified to analyze.

It was at that point that the word “disabled” became real to me for the very first time. It has crossed my mind a few times since diagnosis, but not seriously as retirement tends to cast a different hue on the matter. At convention it hit me fully that it would be impossible for me to carry out the responsibilities of my previous position without considerable accommodation.  In Canada, PD is considered a disability. I have never really considered myself to be disabled but that reality is now upon me. It is not a word (or a condition) for me to hide behind nor should I. I want to pursue life in all its forms and will continue to do so. But I am also cognizant that as a PwP, I can no longer participate in society in a manner equal to my former self.  There is a longer discussion to be had on this point but it will have wait for another time. Those of you who have laboured through this text to this point are undoubtedly relieved.

So, what surprised me?

CUPE traditionally opens and closes convention with Solidarity Forever and Bread and Roses, performed in both English and French. Of course, this was not new to me having attended countless other conferences and conventions. But to my surprise, I was quite noticeably (to me anyway) emotional during the singing of Du Pain et des Roses – a feminist and labour anthem, and slogan that has its roots in the Lawrence, Massachusetts textile strike of 1912 and reprised in a revised form in the 1995 March of Women against Poverty.

Once you hear the uncomplicated clarity of the lyrics of Du Pain et des Roses, it’s refrain and demands are etched in your mind forever. Have a listen here to the group Break Syndical who performed it at convention.

http://www.youtube.com/watch?v=jsY0ODVIjCA

Over the course of the week many staff and members made their way to our seats in the convention hall to say hello and pass on their good wishes. And each walk through the convention centre and hotel was a walk through a gauntlet of handshakes and hugs. I really loved seeing everyone and exchanging a few words, if even only for a few moments. However, I was not prepared for my reaction after you left. I would lean over to Anne to say a few words about you and I would be unable to enunciate these words as the emotions welled up inside.

I am not certain exactly what was happening. Perhaps, it was the realization that I would never again have the opportunity to be in the presence of those who are so dedicated to making a positive difference in society. During convention, Tomson Highway, renowned Canadian playwright, novelist and musician, told delegates he has always seen trade unions as “the guardians of human dignity.” Perhaps, it was the realization that I no longer had a central role in policies and campaigns to continue that custodianship.

Or perhaps, some of it was Parkinson’s. About 15% of PwP do exhibit symptoms of a neurological phenomenon called involuntary emotional expression disorder (IEED.)  It is a “non-motor” symptom of PD that is not well understood.  In any case, those who experience it find themselves, for example, being tearful in a manner disproportionate to a particular event.  Over the past several years I had noticed a change in my “sensibilities” such that I would be close to tears during commercials on TV – and these were commercials about new cars and household products, not intended to be tearjerkers! Of course, this change could be attributable to personal weakness rather than to PD, and you realize that as a man, I am not prepared to admit such a thing openly.  Should I be embarrassed?  I am not really. I am just trying to figure out what is happening and trying to do so in a reasoned fashion. So, I am going to blame it on Parkinson’s.

Anne remarked several times during the week that she felt as if she were accompanying a rock star, as everyone wanted to reach out and touch me. Her words, not mine. It was a bit like that.  But truth be known, I wanted to touch you as much or more. It was my opportunity to have tactile contact with some of the most dedicated individuals I have ever had the good fortune to encounter. And it would very likely be the last time – just a fact of life. I will leave multiple farewell tours to Kiss, Cher, The Rolling Stones and the Beach Boys.

There were many handshakes and hugs. Oh, there were a few (but very few) fake hugs as not everyone was a friend of mine within the union, and polite protocol prevailed. This is not surprising.  What was surprising to me was the genuine, warm, heartfelt reception I felt had from everyone I encountered. Rest assured, it was reciprocated.

I must offer a sincere apology to many of you though as I am afraid what you received was a very sweaty hug from a PwP.  In fact, sweating uncontrollably (hyperhidrosis) for no apparent reason is another symptom of PD and is often an early warning sign although it is not the same for everyone. PD affects the autonomic nervous system such that it loses its ability to regulate the body. Excessive perspiration may also be a consequence of PD drugs such as Levadopa that is critical to manage symptoms such as tremor. 

My first memorable encounter with this problem was when I was working on an election campaign for a candidate at a local polling station. I was literally dripping as I examined the voters’ list. I am certain workers at the poll were less than thrilled but I hope my candidate realized how much sweat I put into her campaign! At convention I am surprised that you didn’t back off and say: “Get away from me you great sweaty beast!” You are to be commended for your politeness, or perhaps you were a woman who was suffering through a hot flash and the feeling was mutual.

At the end of the week, I was happy as the kilometers clicked back up the tracks towards Ottawa. I had a great time overall. I was proud of the work that my former colleagues produced in order to make convention a huge success setting the path for another two years. But most of all, I was happy to be headed back to our garden – time to put it to bed for another year. Snow would be soon upon us and I had already begun the intellectual enterprise of plotting human intervention (for better of for worse) into Nature’s master plan to recreate another garden to stimulate and excite our senses, and challenge our abilities. Hmmm, sounds like the subject matter for another blog.

In the case of gardens, they definitely do not listen to my admonitions not to go away, and when I turn around they are gone. 

Still beautiful but almost gone (for the winter.) Photo: S. Marshall

Still beautiful but almost gone (for the winter.) Photo: S. Marshall

Parkinson’s: Identity Crisis? Who? Me?

Not surprisingly, upon discovering that I have Parkinson’s, I began a process of reassessing who I am.  Some might say I was having an identity crisis but I prefer to say that I was searching for the answer – with apologies to The Killers  http://www.youtube.com/watch?v=RIZdjT1472Y who sing

Are we human or are we dancer?

My sign is vital and my hands are cold

And I’m on my knees looking for the answer

Are we human or are we dancer?

This song has been bouncing around in my brain for some time. It is funny what you think about when you are gardening. Only I was singing (badly out loud, but perfectly in my head) alternately:  “Am I Parkinson’s or am I gardener?” Or “Am I human or am I Parkinson’s?” The third possibility, “Am I human or am I gardener?” was never really an option. Parkinson’s is part of the equation no matter how you look at it.

IMG_0608

Who fills those shoes under the hat? Photo: S. Marshall

I am not sure how far to proceed down this road as I see a huge warning sign that says “CAUTION: Sharp Turns, Philosophy ahead!”  So I will try to steer clear of homespun philosophy as much as I can (philosophers would delight in picking holes in my logic anyway,) and stick to the conundrum that Parkinson’s presented for my self-image. Oh oh, warning sign: “CAUTION: Foggy Patches, Sociology Ahead!”   

Like many others I suspect, I kept my diagnosis of Parkinson’s secret from most of my work colleagues, and most of the rest of the world. I told only a very few trusted colleagues, some close friends, and my family of course. I was not yet prepared to face life with the label “Person with Parkinson’s (PwP)” stamped on my forehead. At least that was how I perceived people would perceive me. [Why am I thinking of Charles Horton Cooley’s Looking Glass Self?] Anyway, this was probably moot as, in retrospect, my tremours were certainly noticeable to anyone who was half paying attention. Still, I felt that if I admitted to having Parkinson’s it would negatively affect work relationships and cast doubt upon my capabilities and capacity to do my job.

It wasn’t until I had formally announced my retirement with a firm date, that I began to process that I really do have Parkinson’s and it would (and will continue to) influence my self-identity. By the time of my retirement dinner, I didn’t really care if anyone knew and I began to speak more openly about it, and word began to slowly “leak out.” It was neither controlled nor orderly. I lost track of who knew and who didn’t. But my self-image and identity were in a state of anomie [Damn, what is Emile Durkheim doing in here?] Who was I? And what were the expectations?

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Does this False Spirea have an identity crisis? Photo: S.Marshall

I realize that we go through life playing many parts. Oh oh, “CAUTION: Overacting Possible, English Literature ahead!” Shakespeare penned this famous monologue in As You Like it around the turn of the 17th Century.

All the world’s a stage, And all the men and women merely players: They have their exits and their entrances; And one man in his time plays many parts …

Of course I have had many roles in my life – son, brother, husband, father, uncle, academic, teacher, colleague, activist, boss, to name only a very few.  The expectations for each role had to be learned and I performed some better than others.  As each role unfolds, it brings me closer to the grand finale. As Shakespeare concludes

… That ends this strange eventful history, Is second childishness and mere oblivion, sans teeth, sans eyes, sans taste, sans everything.

Wow!  That seems much too serious to contemplate at the moment. There can be no doubt that I will die – sometime – but I need to know the essence of my identity, and what informs that identity as I shuffle along that path.

Once my work persona began to recede and the inevitability of being a retiree crystalized in my brain, the realization that I am a PwP also took up permanent residence.  At this point I actually wanted to tell everyone I met, no matter how well I knew him or her, that I have Parkinson’s. “Hello, my name is Stan and I have Parkinson’s.” Or, “Hi Sarah, haven’t seen you for awhile. You know I have Parkinson’s eh?  I had to forbid myself deliberately from making it the initial and primary topic of conversation. It was taking over my consciousness while it was attempting to take over my body.

Strangely, it is a bit like your first love when you want to tell the whole world that you are in love – shout it from the rooftops as they say. Only, you can’t be in love with Parkinson’s, can you?  But, when it is such an integral part of your self, a part you cannot shed (at least not at the present time,) do you have no choice but to accept that you are Parkinson’s, and to love that reality? It is the only reality you have. (Whoa, I promised there would be no homespun philosophy here.)

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A beautiful rose for your lover. Rosa Morden Centennial (H.H. Marshall) Photo: S.Marshall

Many PwP perform heroic feats of human and physical endurance, or continue with productive and creative careers. They continue with a preexisting reality or create a new alternate reality. They are to be greatly admired as they raise awareness to Parkinson’s in ways that few others can. I often wonder if their self-identity is more closely tied to their pursuits or to Parkinson’s?  A question for another day as I cannot answer it.

For most of us, our expectations and goals are modest but vital to the condition of our existence. We know that physical exercise and proper nutrition are correlated to well being in a Parkinson’s body.  Making our bodies move in some way each day is a goal in and of itself, as is ensuring that we have proper nutrition. Maintaining an optimistic outlook, taking advantage of support groups within the Parkinson’s community, and seeking advice and treatment from an integrated team (ideally) of health and social services providers are all vital to our being able to slow the progression of this relentless disease and alleviate its symptoms. We do this ourselves, with our families and with our caregivers. It is a difficult road for most of us and we must be ‘comfortable within our own skins’ to meet the challenges.

OK, let’s cut to the chase.  And I truly believe what I am about to say. Without human complicity, Parkinson’s does not diminish the human soul; it does not diminish the joys or exacerbate the sorrows that we all feel in life; and it does not break the human spirit. In short, Parkinson’s is only greater than us when we let it be greater than us. But rest assured, it is ever a part of us.

For me this means I am human (although some may question this assertion.) I am Parkinson’s, as Parkinson’s is a condition of being human. And I am gardener, mostly by choice and environment, but a case could be made, given my family history, that there is a genetic component. (You know, the apple not falling far from the tree – OK, OK, that is resorting to cliché to make a point.)

So, why did it take so many words to get to this point? Because that is precisely how many words, no more and no less, it takes to reach this conclusion.

Or

As my father would say before he became “sans everything,” ”you get better results in the garden if you fertilize liberally with manure at the right times.

You decide.

Afterword

Just be thankful that I spared you a convoluted exegesis on ‘life’ as thesis, ‘Parkinson’s’ as antithesis and ‘living with Parkinson’s’ as synthesis, with apologies to Karl Marx. I also considered an examination of Id, Ego and Super ego with apologies to Sigmund Freud. Perhaps another time, eh?

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These monster sunflowers didn’t need any manure to grow out of control. Photo: S. Marshall