HEY! I CAN DANCE!?

HEY! I CAN DANCE!?

A strange thing happened to me on the way to dance class 

Once a week Anne and I meet other Persons with Parkinson’s (PwP or Parkies), their lovers, spouses, partners, and/or caregivers to take a dance class. It is one of those regular, don’t miss it, kind of dates – but nothing salacious; after all we do meet in the early afternoon.

Today, I am going to tell you a little about the relationship between Parkinson’s disease and dance, as well as a few of the challenges that I faced on my journey to the dance studio.

If you have been following the research literature and the popular news reports about Parkinson’s disease, you will know that dance and other forms of coordinated, patterned movement e.g., Tai Chi, boxing, etc. are touted as the way to delay and/or obviate many of the symptoms of this pernicious disease.

The School of Dance

The School of Dance under its Artistic Director, Merrilee Hodgins, has long been front and centre in taking dance to the community in Ottawa and environs with special “Outreach” programs e.g., for learners with Down’s syndrome and for seniors and others in continuing care settings. It seemed to be a natural step for The School of Dance to expand this commitment to community by meeting the demand for dance classes for PwP. The School secured funding from the Ontario government to provide their “Connecting with Dance: Designed for People with Parkinson’s” program and at no charge to participants!

School of Dance Parkinsons Notice 2018 1

Our dance instructor, Maria Shepertycki, has impressive credentials in the world of Ukrainian dancing as a teacher, performer, and administrator – she is co-director of the Ottawa School of Ukrainian Dance. Maria also has formal training in ballet, which she has coupled with introductory and advanced training in both Toronto and New York with the Mark Morris Dance Group and the Brooklyn Parkinson Group. Even better, Maria has formal university training in human kinetics and has worked extensively with PwP in both clinical and home settings utilizing a wide variety of both traditional and new therapies. It is wonderful to have a dance instructor with such knowledge, training, and experience in delivering therapies to PwP.

Musician Nenad Duplancic provides live music on the piano or keyboard in a valiant effort to ensure we Parkies don’t lose the beat. Anne has always emphasized the importance of live music as a tool the instructor and, by extension, PwP can use to refine our movements. The best part is that Nenaud makes our hour-long session more enjoyable with his on-the-spot changes to the beat and melodies, assisting us to dance our best. The time flies by.

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Nenad Duplancic at Keyboard, Marie Shepertycki kneeling at his left, and the troupe practising with scarves (The School of Dance).  Photo: S. Marshall 2017

Connecting Dance and Parkinson’s

The truth of the matter is that I must dance because I have Parkinson’s disease (PD). No, PD itself does not transform me miraculously into a dancer or motivate me to dance, even though that may appear to be the case as I weave and bob and sway, my body responding either to the tremour and involuntary muscle movements that provide the most common stereotypical characteristic of the disease, or the dyskinesia of the side effects of my medication, or both.

You may get the impression that dance is a relatively new alternative to traditional exercises or therapies for Parkinson’s but it was being studied and implemented at least a decade ago and the movement (no pun intended) has been growing ever since.

Research indicates that dance is beneficial as a therapy for Parkinson’s and there are many dance programs pioneering this strategy in their own parts of the planet. I am not going to attempt to reference all programs but certainly special mention should go to the Mark Morris Dance Group Dance for their PD® program in New York and Dancing with Parkinson’s http://www.dancingwithparkinsons.com lead by Sarah Robichaud in Toronto. Canada’s National Ballet School (NBS) has developed a program for PD called “Sharing Dance”. Working with researchers from York and Ryerson Universities, the NBS program is part of a study of how dance affects the brain in those who have Parkinson’s. In the UK the “Dance for Parkinson’s Project” led by Dr. Sara Huston and Ashley McGill at The University of Roehampton

… investigates the experience of dancing with Parkinson’s: how people engage socially and artistically, how dance may affect functional mobility, how experiences of dancing may affect everyday lives, what motivates people to dance and keep dancing.   Commissioned by English National Ballet  English National Ballet in 2010, the study (2010-2011 and 2011-2014) has tracked the company’s Dance for Parkinson’s programme in London, and its regional classes in Oxford and Liverpool. The research is unique in using a broad array of research methods to examine dance for people with this degenerative neurological condition.

Through the use of participant observation, one-on-one multiple interviews, focus groups, participant diaries and film footage, we have been investigating over a four-year period how the dance program affects people socially, within their everyday lives, what motivates them to dance and keep dancing and how participants engage artistically and technically with movement.

The evidence to date shows that if a Person with Parkinson’s (PwP) dances, s/he can alleviate some symptoms, live with them more effectively, and improve quality of life. In short, dancing is good for PwP. More specifically, dancing improves gait, balance, coordination, flexibility, and may assist in overcoming some persistent problems for PwP e.g., freezing. Dance improves cognitive performance through learning the patterns of the steps and movements as well as keeping time to the music.

Dance helps us meet the challenge of cognitive impairment head on (so to speak) as well. All of us in the baby boom generation are rightfully concerned about cognitive performance as we age, but Parkies are particularly mindful, as we don’t wear cognitive impairment as well as those who can claim a little “forgetfulness” from old age.

There is more and more research and evidence that there is “brain plasticity” or “neuroplasticity” i.e., the brain has the ability to recover after being damaged. In the case of Parkinson’s that damage is done when the dopamine producing neurons in the substantia nigra area of the brain die. What causes them to die? We do not know but it is likely that over 70% of those neurons in my substantia nigra were dead by the time I was diagnosed. The death of these neurons plays havoc with our neuropathways, the chain of neurons transmitting signals to and from the brain, such that even simple movements that most people do without thinking e.g., walking, get screwed up. Parkies are very familiar with the “Parkie shuffle” that is symptomatic of Parkinson’s.

It is important to remember that if the brain is plastic we can work to regenerate some of those pathways. Learning new dance steps and keeping time to the music not only strengthens existing neuropathways but develops new neuropathways as well.

Do Parkies Dance to the Beat of a Different Drum?

What makes PwP unique as dancers is that we each have very different abilities and are at different stages of advancement in the course of the disease itself. Even though the movements of the dance are patterned and choreographed by our instructor for our class, and we execute them in common, PwP cannot help but overlay shuffles, shakes, and sways peculiar to the inner rhythms (or arrhythmia) of each individual dancer. Only a Parkie or someone very close to a Parkie can truly appreciate that the related muscle movement disorders sometimes are out of body experience. This uniqueness does not mean that we should just go with our own movements. To the contrary, we dance to overcome those Parkinson’s signals and involuntary muscle movements; to develop a dancer who is precise, purposive and purposeful, in time with the music and faithful to the choreography.

Parkinson’s may want us to dance to the beat of a different drum but that dance provides us with false hope and then, no hope. Maybe it is ironic that Linda Ronstadt and the Stone Poneys had a big hit with “Different Drum” in 1967 as Ronstadt was subsequently diagnosed with Parkinson’s in 2013. She had retired from performing in 2009. I know the song is not about Parkinson’s but the line that sticks with me is “we’ll both live a lot longer if you live without me.” I dance to shed the cloying, clinging Parkinson lover who refuses to release me.

Parkies really are social people, you know; It just doesn’t seem like it some times

One of the symptoms of Parkinson’s is slowness in the facial muscles resulting in delayed facial expressions such as smiles or frowns. They may also look off into the distance or not blink for long periods of time. This makes PwP seem aloof or perhaps “not all with it”. As Parkinson’s advances, we may develop a “mask” where the muscles in the face no longer work properly such that your face does not reveal any expression or emotion. So, if you tell a really great joke to a Parkie who has this symptom, it will not be evident that they have understood the joke or find it funny. It is disconcerting at first because in everyday social interaction we rely extensively on facial expression for feedback and cues for further interaction. Until people understand this condition they may think you are a “stick in the mud”, unsociable, or simply don’t like them. It is a pain in the ass, to say the least, to be constantly apologizing or explaining.

When you have Parkinson’s, you tend to carefully pick and choose your times and occasions to socialize. I know that I am reluctant to make a commitment to go to dinner, see a ballet, visit with friends or any number of things only to find that Parkinson’s has changed its schedule and I am hit with a full blown case of Parkie with uncontrollable involuntary muscle movements, tremor, Bradykinesia (slowness), rigidity, or even difficulty speaking or swallowing, or any number of other motor and non-motor symptoms. Sometimes the medication kicks in and sometimes it doesn’t. I like to say that Parkinson’s is predictably unpredictable on occasion. Nevertheless, it is not completely random either and I have begun to understand how to make adaptations, accommodations, and compromises.

Once Parkinson’s has advanced to a point where you can no longer hide its symptoms, you begin to curb the number and types of social activities where you meet people other than family. Why? Let me list some of the reasons:

  • Whether we like it or not there is a certain stigma to Parkinson’s and when people are told you have this disease, they often assume that you have cognitive impairment or even dementia.
  • Dementia is associated with Parkinson’s but it is not the norm. Estimates are that 24% to 31% of PwP have dementia and 3% to 4% of all dementia in the population is due to PD. The prevalence of Parkinson’s related dementia in the general population aged 65 and over is 0.2% to 0.5%.
  • Parkinson’s changes everything and you no longer have complete control of motor and non- motor functions. You sense that everyone is aware of these changes and you are embarrassed by the fact that you are not the same person you used to be. Of almost equal weight is your perception that you embarrass others.
  • Parkinson’s may cause you to walk or move in a manner that leads people to think you are drunk. This can result in less than satisfactory interaction with those around you at a social event where not everyone knows you personally.

As Parkinson’s advances I look for “safe places” to do whatever I have to do. I do not like to disrupt or disturb others and I don’t want to be constantly defending or explaining my behaviour nor apologizing for it. Of course, such “carefulness” results in a tendency to isolate oneself from your community. The more you do that the more likely it is you will succumb to depression. Approximately 30% of PwP do develop feelings of apathy, which can be a symptom of depression. We need to get out more, not less, but so many things seem to conspire against us that the goal is elusive some times.

Rarely do PwP gather with other PwP. We do have support groups for PwP and our significant others, organized by Parkinson Canada each month. They serve as places where we can obtain information from experts and learn from each other. But we need more than these occasions.

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Marie Shepertycki (left) and Connecting with Dance Designed for Persons with Parkinson’s class (The School of Dance) 2017

Dance class is a safe place

Dance class designed for People with Parkinson’s is another of those “safe places”, this time meeting with other PwP in a setting that is not so focussed on the detail of the disease. The objective is to learn the moves and choreography, and integrate the beat and the music into our movements such that new neuropathways are developed, existing neuropathways are strengthened, and lost neuropathways are recovered. And we can do all of this without ever knowing, or needing to know, what the heck a neuropathway is. Dance class is dance class and because we are in a safe mental and physical environment with other Parkies, we don’t have to apologize for the way we move, how we look, or how we feel. Feelings of guilt seldom come into play, as it is a safe place for our lovers, spouses, partners, and caregivers to express their particular ‘dance’.

Dance class can be more … and will be more

The dance date I have each week with Anne is partly a social affair. We have fun. We meet new people and form new friends. We connect with some others we have known for a while, get to appreciate their talents and to know them and their families better. The School of Dance program includes time at the end of class which allows us to share ideas about Parkinson’s therapies, recommend neurologists, physiotherapists and other professionals and catch up on what is happening in the community.

For me, dance class is therapy for Parkinson’s and assists me to meet the challenges Parkinson’s presents each and every day. The world of dance, with which Anne identifies, knows class as fundamental practice and instruction on an ongoing basis. As such, maintaining, honing, and fulfilling “the dancer” within is the motivation to attend, and class becomes part of daily routine. These two approaches to “ class” are not far apart.

In fact, what we are doing in Parkie dance is to practice the basic movements (the syllabus.) It is here that smart instructors like Maria sneak in some movements from ground breaking therapies such as LSVT Big. Then we learn and perfect a set pattern of steps over the weeks. This approach is much the same as it is in performance dance – fairly far removed from those hoe downs in the hayloft on Saturday night – but we are not planning a performance. Thank goodness.

Tango Argentina

While it is true we will never perform the Tango like these professionals in Buenos Aires, Argentina, Nenad does play tango music and Maria incorporates a few moves into our choreography.  Photo: S. Marshall 2004

Back Story: I was a sk8ter boy: she did ballet (with apologies to Avril Lavigne)  

Journalists often talk about “the back story”, the historical context that gives rise to the feature story on which they are reporting. In this case, the back-story could be simply the fact that I have Parkinson’s disease and likely had it for some 10 years before my diagnosis 5 years ago. Parkinson’s is one of those diseases that gets progressively worse as time passes until it jumps up and demands to be recognized for what it is: an unforgiving, soul sucking disease. Well, I could go on and probably will in a later post and while there are many back-stories to this feature on dance and Parkinson’s, I will detail just this one very important story for me.

Perception of self is forged at a very early age and shaped mostly by family, teachers, and our play friends. What you need to know for today’s story is that my perception of self going back to my most early memories is that I am uncoordinated, born without rhythm and therefore can’t dance. For the past 60 plus years I have gone through life believing that I [choose one]: a) Cannot dance; b) Do not dance; c) Will not dance; d) Should not dance; e) Must not dance; or f) All of the above.

For all these years I believed that the correct answer is “all of the above”.

This view was reinforced at every turn throughout my life even though I was coordinated enough to be a pretty decent hockey player and good at most sports requiring foot work and good hand – eye coordination. I was an ice hockey kid – I lived and died for hockey. I did manage to play at the Junior ‘A’ level but that is a story to be told another day. I was a superior skater playing defence with great north – south and east – west agility on both sides in combination with good stickhandling ability and an eye for the net. Still, dance did not rest easily in my body and rested even less easily in my brain. In fact, I was (and remain) very inhibited about dancing to say the least.

Early in my life I accepted the fact that somehow musicality, beat, and rhythm had not found a receptive home in my soul. Its absence manifest itself in a body that is too stiff and in a brain that is equally rigid, resistant and incapable of providing neurological guidance to my muscles such that I feel I do not move gracefully through space. Except when I was playing hockey – a game where my movements were embedded in existing neuropathways such that my muscles moved without forethought and new neuropathways could be learned in the matter milliseconds by a brain hungry to transpose received information into the neurological code necessary to execute specific muscle movements.

By the way, I have met many other people (mostly men) of my age who were subject to this same criticism resulting in an ongoing reticence to dance, no matter what the occasion. Of course, the way out of this particular problem was to excel at something that required elements of those very characteristics that made one shine on the dance floor e.g., sports. Sports were a kind of ‘get out of dance free card’. If you were good at sports, it was OK that you couldn’t or didn’t dance. You would always be respected (by men mostly) as having the talent and skills to be an athlete of some repute.

Anne’s definition of a ‘dancer’ is someone who is able to move through space (on the ground or in the air) to music in a manner that defies true description and has the audience holding their breath or uttering spontaneous epithets of disbelief i.e., true dancers move through space better than other people that dance, and all dancers move through space better than those of us who move as if we are dancing to the tune of the periodic table in chemistry.

Anne has always been a dancer. From the time we first met over 20 years ago she would do an allegro across the kitchen floor and pirouette in the hallway. I can assure you that this joyfulness had nothing to do with having met me; she just LOVES ballet in particular and most other dance styles in general. She was inculcated into that world at a very young age and continued to attend ballet or modern dance classes for most of her life. There were a few years off to attend to having children and for her body (knees and feet) to mend because her brain did not comprehend that her body could no longer take the rigours of four or more full out dance classes a week.

Anne is happiest when on the floor or at the barre, or in this day and age watching a particularly inspiring dance performance clip from the Internet on her iPad and all I hear is “… holy sh–“ when the performance or the performer truly astounds her. I was going to say that Anne is an “aficionado” of dance but that would be too soft as a descriptor. Anne is a strident and critical analyst when it comes to evaluation of choreography and the execution of both technical and artistic elements of a performance. She is a bit of a “fanatic” on these matters. During live performances she has been known to voice such excitement and approval softly but audibly and the surrounding patrons of the dance appear not to be offended, as I suspect they agree with her and are thinking “ I wish I had said that.”

Fortunately for me, the dance of life and love does not always have predictable choreography or outcomes and she chose to be with me even though my “dance rating” was a colossal “fail”.   Thankfully, she saw that I had other qualities and that I was capable of appreciating dance from angles to which I had never paid much attention previously.

Anne and I never expected that I would be diagnosed with Parkinson’s but that is what happened and … surprise, surprise, … the breaking news is that I can dance! And I must dance! The silver lining in the diagnosis is that we now spend some time in a dance class where I can appreciate the importance of developing the dancer within – something Anne has known all her life.

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Anne and Stan Marshall (aka The PD Gardener) Photo by Maria Shepertycki 2017

Isn’t it ironic, don’t you think? (With apologies to Alanis Morissette)

Is there a grand finale to this dance? I assume there is but I am quite uncertain as to the choreography. Parkinson’s disease can make my body dance independently of any commands sent by my conscious brain. Maria, our dance instructor, and Nenaud, our musician, along with Anne, my dance partner are doing their level best to coerce my brain and body to respond to an inner metronome cancelling out Parkinson muscle ‘mis-movements’, replacing them with a body and spirit that flows effortlessly through space. Still, I perceive that I don’t seem to have one miserable neuron in my body capable of consistently exciting muscles to dance in such reverie that it that can transport your mind to a unique place or state of being – but I am reminded often that “the benefit is in the work” so I just keep on dancing, my friend.

Finally I find it truly ironic that I now face my inhibitions about dancing and my inherent awkwardness by pursuing learned, patterned dance movements to obviate the involuntary dance forced upon me by my dopamine-deprived brain

Resources and References

Alanis Morisette, Ironic, 1996

https://www.youtube.com/watch?v=Jne9t8sHpUc

Avril Lavigne, Sk8ter Boi, 2002

https://www.youtube.com/watch?v=TIy3n2b7V9k

Dance for PD

http://markmorrisdancegroup.org/community/Dance-for-PD/Dance-for-PD

Dance for Parkinson’s Project

http://roehamptondance.com/parkinsons/

Dancing with Parkinson’s

http://www.dancingwithparkinsons.com

Earhart, G. M., “Dance as therapy for individuals with Parkinson disease,“ European Journal of Physical and Rehabilitation Medicine 2009 June; 45(2): 231-38

English National Ballet Dance for Parkinson’s

https://www.ballet.org.uk

Linda Ronstadt and the Stone Poneys, Different Drum, 1967

https://www.youtube.com/watch?v=TGZznJXY1Xc

National Ballet School

http://www.nbs-enb.ca/Sharing-Dance

Parkinson Canada

http://www.parkinson.ca

The School of Dance

http://www.theschoolofdance.ca

© Stan Marshall (The PD Gardener)

 

 

A Celebration of the Life of John R. Mills, Farrier, Renaissance Man, and Man’s Man

Preface

Celebrating the Life of John R. Mills was, and continues to be, an intensely personal affair and while I am making my insider view public by writing this blog post, I ask you to be respectful should you decide to respond, comment or question.

This account of the day’s activities is neither exhaustive nor inclusive and does not follow the precise chronological order in which events occurred. I have also taken some liberties in my role as amateur reporter to interject commentary, interpretation and analysis which, I believe, is consistent with the intent the day and enhances the readers’ understanding of both the Celebration itself and the life of a beloved Kentucky farrier

Finally, please note that I am Canadian and ‘writing Canadian’ means that some words are spelled differently e.g., I love the colour orange.

Two irrefutable facts

Today, I am a little at a loss as to how and where to begin so I shall begin starkly and painfully with the first irrefutable fact. John R. Mills is dead. [See obituary in Appendix.]

The second irrefutable fact is that John R. Mills is alive. “Film at 11” as the newscasters of early television used to say.

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John R. Mills

Reportage (is not an equestrian sport)

I am neither a trained nor accredited journalist but today I shall engage in a little reportage of the funeral … no, service … no, ceremony … no, commemoration … no, celebration … no, party … no, event …. oh what the hell, let’s just call it for what it was – a migration of anyone who was anyone in the life of John R. Mills, Farrier and Blacksmith, to a gathering at Woodgate Farm just outside Louisville, Kentucky to pay homage through prayer, poetry, song, music, storytelling and many a glass with a “wee dram” of scotch or a ‘fizz’ of champagne raised in toasts to this humble yet “deeply intelligent, quirky and feisty” man.

John’s death came as no great surprise to anyone in the know for he had been suffering from some form of pernicious lung disease for several years. I am not going to go into the medical diagnosis and jargon here but the inside word was that John was already entering the second decade of a prognosis which had him dying half way through the previous decade. In this respect, John was a fighter and an inspiration to many, including myself, as he clung to life “for dear life.”

Stereotypes, electric bikes, full body kayak rolls and farewell tours

It is well known that farriers and blacksmiths are muscular – strong and powerful as they wield hammer against red hot metal. And no matter the season they were drenched in perspiration as they tended their forges, the little fires of hell that live in their shops and accompanies them on their trucks. Farriers are equally at home filing the teeth or clipping and shoeing the hooves of animals that can weigh a tonne (2,200 lbs) and have a propensity to kick and bite. Handling these animals requires strength, skill, tact and patience. And of course you must also possess a personality that can handle the owners of these animals, no small task.

 

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A nosy horse on Woodgate Farm Photo: Stan Marshall

 

John, the handsome and muscular young farrier and blacksmith was a stellar example of the ideal. He still exists in youthful form in photographs and lives on in the memories of those who knew him. However, the physical manifestation of that particular farrier had long fled the scene before his passing. John’s physical presence was greatly diminished in the wake of a disease and illness that slowly stole strength from his powerful frame and inevitably had a wearing effect on his psyche but not on his agile brain.

Yet, John persevered and extended his time on this earth for as long as his incredible constitution would permit. There is no doubt that these last few years were difficult ones for John, for his family and for his close friends. As you walk ever closer to the end of life, you reflect on your frailty and vulnerability and try to recapture the strength of your past. So it was with John as he began a modified ”farewell tour” about two years ago, but not just by visiting places and people from his past but by engaging in fun creative pursuits e.g., building an electric bicycle, or attempting feats which he was able to accomplish with a younger, stronger body e.g., doing a full body roll in a kayak. Just for the record, he built the electric bicycle but was not able to accomplish the body roll. No shame there as far as I am concerned. I was never able to do a body roll in a kayak and quite frankly, I doubt that I could build a satisfactory electric bicycle.

The story always begins when you meet John

I first met John when I was dating his sister, Anne, who I subsequently married with John’s approval, I believe. John and I always got along well, as we are close in age, have similar backgrounds and had similar experiences through our teenage years. Neither of us took a straight-line route to our final career destinations but we were diligent individuals (and John was intelligent) with good work ethics and somehow it turned out all right for each of us – except for the health issues of course. At age 69 John passed far too soon and I struggle with Parkinson’s disease. I shall refrain from elaborating on my condition any further except to say that our respective maladies presented us with similar real challenges and consequences that brought us closer together in these latter years.

Accounts of the exploits of John R. Mills and of his acumen as a storyteller have been circulating for years and his death serves now to detonate another explosion of tales – some well known, some dredged from almost dormant memory banks, and some newly uncovered and never before spoken about in public. Most of the stories are true and some are … well … mostly true.

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A few family and friends remembering John R. Mills  Photo: Stan Marshall

On the day of the gathering the stories fly fast and furiously. I overheard several different categories of stories. Some were intensely personal, almost private and whispered in hushed and reverent tones. Other stories are clearly part of the commons already and their telling marks just another occasion to be regaled to the point of belly laughs, all the while enhancing the details for the next telling. Still other conversations are ‘fact finding’ missions, gathering information and threads of details that will become stories in the future – or perhaps these conversational groupings are the crucible within which the narrative of the life of John R. Mills is being re-created, re-invented, or re-envisioned – spiced up or sanitized as necessary.

A ‘pop – up’ museum

The gathering to honour John R. Mills is well attended. Let me set the scene for you.

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Parking is at a premium at Woodgate Farm for the Celebration of John’s life  Photo: Stan Marshall

Your first footsteps onto Woodgate Farm take you to a greeting spot where a hammer and anvil await along with an invitation.

“Please take John’s hammer and send out a ring on his anvil. In the traditional farewell to Farriers and Blacksmiths, let the anvil’s peel [sic] carry your memories to him on his next adventure.”

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The added and unstated bonus is that the ring of the anvil alerts the bartender at the chuck wagon (built by John himself and pictured at the top of this post) that a Bloody Mary should be mixed and at the ready for the new arrival.

The house and garden at Woodgate Farm has been transformed into a small museum of John’s inventions, creations and activities – all artfully positioned such that the formal main event of the “ceremony/service/celebration” could take place unencumbered and the informal gathering with a veritable feast could be consumed with equal ease and comfort.

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The hammer and anvil beckons  Photo: Stan Marshall

John the Farrier had many clients (some two legged, some four legged and almost all had shoes) and his skills were in high demand. This was his business and while he was a master at it, and passionate about it, it was not his great passion. The real John the Farrier and Blacksmith loved to invent and build things – especially things that are useful, novel and fun.

Today, this ‘pop – up museum’ showcases a chuck wagon, a hovercraft (one of two he built,) an electric bicycle, a dog sled, steel throwing knives and hatchets, various pieces of leather work in progress, among other items.

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One of several photo displays  Photo: Stan Marshall

Annalea joins the party

John R. Mills was not a man who kept pace with information technology, the Internet and social media. Oh, he knew about it but he just didn’t know how to work it very well … or perhaps he didn’t want to know how to work it. Either way, it doesn’t really matter. He was never going to read my blog on line so I sent him hard copies.

I am not sure whose idea it was but it was a brilliant idea. Perhaps Chris and Annalea, John’s son and daughter, collaborated to make it happen. You see, Annalea could not make the party as she had returned to her home in Antigua after visiting her father in Kentucky. The first I noticed Annalea at the party she was being escorted on (in?) an iPad by Chris. Chris held the iPad out carefully so as to not fall or bump into anyone or anything, talking animatedly to himself or so it seemed. However, his behaviour made sense once you grasped that Skype can be a great way to share both happy and sad moments.

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John R. Mills with son Christopher and daughter Annalea  Photo: John P. Mills Date: unknown

Annalea had cleared her day and stocked her larder with the necessary rations – a bottle of wine, a wheel of Brie, another bottle of wine, some other unidentifiable snacks which may have included one of her father’s favourite, cheesies, and perhaps another bottle of wine. I have not verified the precise menu in Antigua but I surmise that it approximates the list above.

What I do know for certain is that Annalea was with us for a good portion of the day listening to the formal tributes and to the many informal stories about her father. She also spoke personally to many friends who gathered at Woodgate Farm. I think she exhausted the batteries of a number of electronic devices in the process. I have no knowledge of how long she was able to maintain the Skype connection as the party went in camera (ironically) after the formal program closed – a tactic everyone now supports even though there was mild resistance at the time. Keeping the party going does not mean it needs to be recorded for all time. Some things are best forgotten and other things are best remembered through the filters of time and experience.

Suffice to say that Annalea’s presence was a most pleasant surprise and surely was close to a record for unbroken Skyping.

The hunt and the feast

John and his wife Maddy (Dr. Madelyn Jacobs) have had a long  association with the local Hunt Club – usually referred to simply as “The Hunt” and is accorded a status equivalent to “Family.” You need to know that members of The Hunt along with other friends and neighbours are very experienced and efficient at pulling together the essentials of any gathering (including a memorial service) on extremely short notice. We literally watched the feast materialize in front of our very eyes as if spirited to us from chefs working underground.

White cloths covered the banquet serving tables laden with all manner of foods, some home cooked and some purchased, but all suitable for the occasion. Bloody Marys continued to flow from the chuck wagon. Scotch, champagne, wine and beer shared a common status as they lay waiting in strategically placed coolers around the patio and gardens.

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The feast is arriving   Photo: Stan Marshall

On this day of tribute to John R. Mills, the efficiency of the food preparation and presentation to the hungry mourners was a tribute in and of itself to the internal organizational capacity of The Hunt. From beginning to end, it was impressive to witness.

The skirl of the pipes

There are to be many poignant moments on this day. The skirl of the lone piper’s call across the paddocks drew everyone to the house garden for the main event … or at least the part of the day that had a formal program. I shall do my best to capture the flavour of the program but I am afraid that my efforts will result only in a poor facsimile of the actual events. I ask you to be indulgent as I relay my impressions.

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A lone piper calls us together  Photo: Stan Marshall

The poet farrier

John the farrier and blacksmith was a teacher and mentor to several young men, some of whom would go on to become, not surprisingly, farriers and blacksmiths with superior skills both at the forge and in the delicate relationships with large animals and their owners.

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Tools of the trade Photo: Stan Marshall

Isn’t it often the case that those who are creative in one area often excel in artistic merit in other endeavours? It certainly is the case with the young protégé Kraig who composed an emotional tribute incorporating the unmistakable rhythm of the farrier’s hammer shaping steel on the anvil in an adjacent barn; the peal evocative of the working life of the Brotherhood of the Farrier, and of the good wishes each mourner personally sent to John with mighty swings of the hammer on the anvil as s/he entered the grounds earlier that afternoon.

The words to the poem written by Kraig Milam, read for the very first time in public by John’s brother-in-law Gerald Smith and accompanied by Kraig Milam on hammer and anvil at the Celebration of Life, have been printed in the American Farrier’s Journal, November 16, 2016 in an announcement of John Mills’ passing. (See https://www.americanfarriers.com/articles/8791-kentucky-farrier-john-mills-passes-away#sthash.c7lvrCra.dpuf .) The poem is as yet untitled.

The tires crunch in the snow as he backs up to the barn,
the sun not yet up, the first stop of the day.
Warm yellow light bending around the heavy stable door,
it rolls open at his touch, the light and smell of the hay fall out.

Mare in the cross ties, her head hangs low,
he rubs her neck and she gives a long sigh.
she’s a good mare, would have been great if not for that knee
he’s kept her sound now for five years .

He lights the forge, the smell of smoke mixes with the stalls,
the mare lifts her foot, she knows this game.
A thin shoe hits the floor, the knife flashes, the nippers snap
with a practiced eye the rasp grates the hoof to the floor.

At the anvil, the hammer shapes red iron
the ringing muffled by the hay.
The hands swings the hammer, the anvil hits the shoe
the hand, the hammer, the anvil, three parts of the whole

Just one horse ... just one barn ... just one day.
How many of each, the numbers blur.
Tomorrow another horse will need him,
And he’ll swing the hammer again.

One day he'll lay down that hammer.
The anvil no longer will ring
but the farrier will live on forever,
in the memories of horses he's touched.

A long moment passes before the peal of the hammer fades into the warm Kentucky sunshine and the mourners, already struggling with their composure, hear a second poem penned by the young protégé. It is equally beautiful, equally fitting, equally poignant. Our emotional mettle is being severely tested.

A Renaissance man and a man’s man

In his opening remarks, neighbour and friend, Colonel Walter Herd (Retired,) emphatically referred to John R. Mills as a “Renaissance Man” citing his many and varied interests, talents, skills, abilities, and accomplishments, as well as his wide circle of friends drawn from across a wide spectrum of social and economic groupings. It should not surprise you that in true Renaissance fashion, John mentored Kraig (the “Poet Farrier” mentioned above,) and two other young apprentices, Albert and Brandon, in both the finer and coarser points of his chosen trade. He also helped set many others onto a better path in life, and enjoyed a special relationship with his “little brother,” Quinn.

And equally, Colonel Herd knew John to be a “man’s man.”  This designation might seem to be in contradiction to the Renaissance Man label but that is the reality – sometimes the Supreme Being doesn’t arrange character traits to be allocated in homogeneous bundles to individuals. So it was that John was at home with guns, knives,hatchets and axes. He forged and shaped serious throwing knives and axes – heavy ones that reinforced the feeling that you were holding something lethal in your hands. I doubt that there was a single grandchild, niece or nephew who ventured on the property who did not receive a lesson from John in throwing knives and axes.

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Target for throwing knives and axes Photo: Stan Marshall

It follows then that he also had no objection to hunting as a sport and he did make some forays into the hunting terrain beyond the fox hunt.

Colonel Herd also noted that John’s  experience in the mounted force of the Toronto Police Department demonstrated that John had the mental and physical toughness to face any adversarial situation.

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John doing what a man’s man does. Photo: unknown

 

Thoughts and memories

Whoever drafted the program for the Celebration of the Life of John R. Mills knew that each successive item on the program would raise the emotional quotient within the mourners exponentially, setting the stage for the final farewell.

Three members of the Mills’ and extended Mills’ family were given free rein to relay their thoughts on John’s passing and their memories of him through the years. I was privileged to join John’s son Christopher Mills and brother-in-law Gerald Smith (married to John’s sister, Wendy) to make some remarks. I found it a tough assignment to narrow my reflections to fit a tight schedule for the agenda and to give proper due to the man for whom we were all gathered. The following are my notes for trying to manage the impossible.

Notes on memories as delivered by Stan Marshall, brother-in-law

[Caveat: May not be exactly as delivered.]

It is an honour to say a few words on behalf of John’s sister Anne and our portion of the family (our daughters, Natalie, Sophie, Kristen, and Alexandra and their respective husbands and partners.)

John was Anne’s big brother and she tells me he was a pretty fine big brother … did the usual things that a big brother did with a little sister … rough housed and wrestled, teased, and told her stories … but did not throw knives as far as I am aware.

… And whenever she talks about him, it is clear to me that she witnessed the early development of an impishness and outright silliness that we all saw in the adult John R. Mills … later in life … and throughout his life.

Anne tells me that John read to her, told her stories and sang songs for her. This is not surprising. John loved a good story and he loved songs that told a story, like Big John, or maybe Stompin’ Tom Connors singing “Tillsonburg, Tillsonburg my back still aches when I hear that word” – in recognition of his tobacco picking days in Southern Ontario.

John loved a good re-hash of a true story especially one in which he was personally involved. But it had to stretch your imagination ….a story like one I just heard the other day …. And I am by no means recommending this action no matter how captivating the challenge may be …. A story about the early teenage John devising a plan to steal a steamroller and outrun the authorities….  Seems like a challenge. If you want to know how he was successful in doing exactly that, I am afraid you’ll have to find someone else to tell you the story … and the secret.

I think we all know that John was no fool. If something didn’t smell right in a story he had a way of wrinkling up his nose in a way that said “uh,uh” … and he scrunched up his face into a disbelieving look – that’s when you knew he was onto you and the gig was up.

He knew the essential difference between a story and a tale, but more importantly he knew when that difference, made a difference.

By the way, Anne has inherited that same skill and sometimes I see John’s scrunched up face of disbelief on Anne’s head, and that is when I know I am not fooling her or anyone.

Among our children Uncle John has long enjoyed legendary status as they recognized the qualities that made John R. Mills … well … John R. Mills. When asked to describe him in a word or two they use words like “silly, funny, jolly, happy, jovial, warm, creative, great personality.”

When pressed harder they volunteer, “Goofy in a way that is funny for kids and just as endearing now that I am an adult. “

One daughter says, “He reminded us that while being a grown up is hard, we can’t forget to have fun and try new things. “

I think John learned to be creative early in life and that it is hellishly fun to be creative – hellishly fun! You can see that as you look around this farmyard at the wide variety of “toys” he built using skill, knowledge, and problem solving abilities.

Both Anne and I are thrilled that their Uncle John with his personality and his creative vision has influenced our children in a positive way.

This influence was not always one of playing the “jokester.” One daughter says that she has “a cute memory” of a tender moment between John and the good Dr. Jacobs in the early days of their relationship …. a memory which our daughter now credits as instrumental to understanding that adults are permitted to show affection for one another. A good influence indeed!

However, I will leave it others to wax poetic about John in the role of “romantic lead.”

It is safe to say that the influence of John R. Mills on our collective children and indeed on Anne and me, ranges from the “goofy” e.g., hiding a rubber snake in their beds…. to the “fantastical,” the stories of his many adventures and escapades…. to the “creative,” his skills and talents as a craftsman, designer, draughtsman, artist … to the “socially adept,” his ability to connect with a wide range people from many different circumstances and stations in life … to the “sensitive and caring,” his underlying compassion for community, friends and family, no matter how thorny his exterior visage could be … to the romantic …. and back to the “silly” and “goofy” again.

I got to know John in a more in depth way at Wendy’s and Jerry’s cottage on Lake Kawawaymog in Ontario. We spent many an early morning looking out over the misty lake … ‘swapping a few lies.’ It is here that John provided inspiration to me – inspiration to hone the art of the raconteur, the storyteller – the art of knowing the small interstices within a story where the truth can be “massaged” or embellished for effect, or altered to ensure the lesson within the story is learned. I learned that I had to walk the edges of veracity carefully, because if I saw that “scrunched up disbelieving face” of John R. Mills, I had failed.

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The mist slowly lifts off Lake Kawawaymog in Ontario, Canada  Photo: Stan Marshall

It is also at Lake Kawawaymog that I began to understand John’s life and … why I fell in love with his sister … and her often scrunched up disbelieving face.

In part, it is because John and Anne share much of the same creativity and the same sense of whimsy.

Sometimes the simplest things say it all when it comes to silliness… clever silliness.

One day at the cottage, John heaved himself off the couch with great effort, almost leaving his feet as he stood up, raised his arms fully to the sky in his best victory pose, announcing in his best sportscaster’s voice, “He really stuck that landing,” as if awaiting huge applause from the crowd.

Silly? Yes.

Clever? Yes.

Words that will be repeated in our home forever? Yes.

Each of us here today will have similar, simple memories which will forever form our own individual gateway into the complex life of a husband, father, brother, uncle, and friend – John R. Mills.

 He is loved and missed

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Canoes pass in the early morning mist on Lake Kawawaymog  Photo: Stan Marshall

Speech by Christopher Mills, Son of John R. Mills

Christopher (Chris) has a wide variety of memories of his father but the ones that stick with him are the ones which highlight John R’s sense of humour – the funny stories, the desire to do things that are a little off beat. In this respect the apple has not fallen far from the tree and Chris is funny in a quirky sort of way himself. I often refer to Chris as “the funniest man on the planet” and he replies immodestly, “you mean the funniest man in the universe.” Chris has been on the edges of some very funny and creative endeavours and for a while was in a band that toured extensively in Europe. He can be spotted from time to time as an extra in one of Canada’s favourite TV shows, Murdock Mysteries.

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John and Christopher all clear for a hover over Lake Kawawaymog  Photo: Stan Marshall

Chris understands that the imperative in breaking new ground in any field is to take some chances. This is not inconsistent with his father’s approach to life I believe it is this trait that led Chris to be quite provocative in his address to the gathered mourners – particularly about the human half of the clientele of his father’s farrier business. The safe thing would be to say something like, “My father’s recipe for success was one part skill, one part personality, and one part business acumen.” Of course mixing this cocktail is not as simple as pouring scotch over ice  and adding a splash of water – something John had also mastered. In any case, Chris did not do the safe thing, he just laid it out there by revealing that in the latter years, in order to be a client of his dad’s farrier business, the owner must be notable in some way, have a quirky personality, be intelligent and inquisitive, or be a reservoir of inside information. It is hard to say what characteristic would tip the scales in your favour but you most certainly could not be average or dull. In fact, if you were not a client then you were just “boring.”

There was laughter at this point – but was it genuine funny laughter? Nervous laughter? Snorts of indignation? Embarrassed chuckles? Small breathy wry smiles? Who knows, but Chris’ provocation did set people to remembering John in multi-dimensional terms.  There was nothing one-dimensional about John R. Mills and there is nothing one-dimensional about his son, Chris Mills.

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Just some of the animals in John’s clientele?  Photo: Stan Marshall

Chris’ comments got me thinking about the time I accompanied John on his rounds and I had a chance to observe John at work. I think that Chris has not only hit the gathered grievers over the head with his observation that if you were no longer interesting enough, John did not make any extra effort to keep you as client, but he has hit the nail on the head in understanding the role of farrier. You see, John in many ways was a ‘curmudgeon’, which is just an interesting word for an ill-tempered crusty old man. Oh, he wasn’t a curmudgeon all the time, just when he wanted to be and he cultivated his image as that of a “lovable curmudgeon.” Being both lovable and a curmudgeon allowed him to ferret out the most fascinating information about people and to relay that information in story form to others. OK, this may just be a fancy way to say that he was a ‘gossip.’ Oh my, ‘gossip’ is such an ugly word in this context and many take it to mean, “spreading untrue rumours” but this definition is not one that describes John. In John’s case it is more accurate to say that a ‘gossip’ is someone who likes to talk about the private lives of others.

Remember earlier I said that the safe thing for Chris to say would be that the recipe for John’s success as a farrier included one part business acumen. Well, the farrier is a natural communication conduit, carrying information from client to client as he makes his rounds. For John to be successful, he had to use his business acumen (ability to understand and reason) to decide what information to pass on, when to pass it on, and to whom he should pass it. This communication of vetted information from reliable sources, especially in the days before social media, provided a valuable service to the community and accorded the farrier a certain amount of power and influence. It is hardly surprising then that the more interesting and fascinating the private lives of the owners, the better it was for business and the more interesting and often powerful his position became. In other words, no one should be shocked that John chose his clients using criteria that had nothing to do with the animals. He was just taking care of business.

Speech by Gerald Smith, Brother-in-law and Elder Statesman

Gerald (Jerry) Smith is married to John’s sister, Wendy, and that means he is one of the favourite brothers-in-law. Jerry is known to be worldly, sophisticated, educated, articulate, and erudite not to mention politically astute, community conscious, a friend and patron of the arts, a loving husband, father (Kerri) and stepfather (John E.), and respected by all. By virtue of these qualities and the fact that on his next birthday he will turn the page on three-quarters of a century, Jerry is most deserving of the honourific title of “Elder Statesman of the Extended Mills’ Family” (ESEMF).

The following paragraphs are the notes from Jerry on his remarks.

Three themes:

Being first born and only son (you, me and Christopher) [includes John R. Mills, Gerald Smith, Stan Marshall and Christopher Mills] shaped us when it comes to responsibility, caring and nurturing, patience . . .

John R. was more into the hunt than the kill; notwithstanding the boar shot with bow/arrow, or the snake skin on the wall, it was more about solving problems, figuring things out – witness the 2 hovercraft, recumbent (electric) bicycle, dog sled; witness cottage projects including solar power, 5.0 hp pump to get water from the lake, hot water shower system, learning to execute Eskimo roll in kayak AND the 7 hour boat!

Finally, our favoured toast – after scotch and before a great meal – ” family, friends, food!”

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Rowboat built for Wendy. Photo: Stan Marshall

Jerry captured the moment succinctly as usual – although at peril of disagreeing with the Honourable Elder Statesman, I don’t believe that John R. successfully executed the kayak rolI – at least not in the last five years. But … that is probably a debate, a question, and a story that will be told and re-told, hashed and re-hashed in the coming years. I bet that at this very moment there are some who would be willing to place a small wager that they personally witnessed John R. coming up out of the water in full body roll pose with the kayak, his round face spluttering, but smiling! Do I have any takers?

The horn and the pipes

The Hunt Club acts as a large (functional) family on occasions like this one. They have the leadership and organizational skills to muster their membership to coordinate with family and friends to meet the needs of any member of this ‘Hunt family’. Food and drink appear on cue; memorabilia, artifacts and inventions are displayed to great effect in the house and around the farm yard; the agenda is put together with care and its execution is seamless with other parts of the day; and when it is all over and the night has swallowed the last of the revellers … er mourners, the visible components of the day have disappeared and if one looks carefully around the farm many things including the hovercraft can be seen back in their assigned storage places. All food, dishes, warming plates, and heaters have disappeared. It brings to mind the old adage “Everything has a place and everything in its place.”

Before our emotions had fully settled following the poems penned by Kraig the farrier, the sob filled silence was broken by a long and mournful tone blown on the hunting horn by Alf Caldwell (LRH Huntsman, MFH*.) At the end of the wail, Alf calls out with a catch in his voice “Gone hhh oo   mmme” – traditionally signifying disappointment at the end of a long day’s hunt, but today poignantly marking the passing of John R. Mills.

Tears, sobs and sniffles ensue.

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Children love to play on the dog sled   Photo: Stan Marshall

In a tree’s shadow, slightly off to the side of the gathering, a lone piper stands just behind three of John’s creations (the electric bicycle, the hovercraft, and the dog sled) silently filling her pipes’ bag with air in preparation for a rendition of Amazing Grace, the immensely popular Christian hymn written by John Newton 242 years ago!

Amazing Grace is almost the perfect complement to the readings and message delivered earlier by the Rev. Joey Pusatari. The hymn seems chosen deliberately for its message that “forgiveness and redemption are possible regardless of sins committed and that the soul can be delivered from despair through the mercy of God.” This message resonates with hundreds of millions of people worldwide and it is no less resonant in Kentucky. The promise that the soul of John R. Mills will live on forever as a result his good works and kind heart, and that John, not a known church-goer, may indeed be granted salvation at this late hour, is greeted with tears of joy, and the only dry eyes are those fixed steadfastly to blades of grass on the ground.

The piper expertly transitions into a rendition of My Old Kentucky Home ** which signals that the celebration of John R. Mills’ life and accomplishments is to continue. I confess that the rush to the bar for more champagne (or scotch in my case) distracted me from noticing whether the piper expertly uses the last of the air in the pipes’ bag without the drones continuing past the end. I assume nothing less.

Reportage ends

To my knowledge there is no reportage of any behaviour, word or deed, subsequent to this moment as the gathering goes “in camera” and reporters and journalists are banned.

There is nothing left but for the party (for it is truly a party now) to continue in earnest as the breadth and depth of grieving has affirmed the first irrefutable fact that John R. Mills is dead.

It is only fitting that there is already a rumour that some stories (embellished or not, who knows?) from the “in camera” party have already leaked out, confirming the second irrefutable fact that John R. Mills is alive.

Time has a way of preserving the richness of the past so that great storytellers may convey it in the future. The richness that is John R. Mills lives on.


*LRH stands for Long Run Hounds which is the the second oldest recognized hunt club in Kentucky established in 1961. MFH stands for Master of Fox Hounds and that individual is in command of the hunt in the fields and in the kennels. Joseph “Alf” Caldwell has been the MFH for LRH since 2011.

** John R. Mills was born in Toronto, Canada and he remained a Canadian all his life. Kentucky though was his adopted home for approximately 30 years. He carried a deep love for both.

APPENDIX

 Obituary

john

John Robert Mills
1947 – 2016

Born October 9, 1947 to John Porter and Joan Whyte (nee Ross) Mills in Toronto, Canada. Stepson of Frances Mills. John died at home on Tuesday, November 8, 2016 surrounded by his “guys”, just as he wished.

Survived by his beloved wife, Dr. Madelyn Jacobs (nee Jackson) and his two children; Christopher David of Toronto and Annalea Juliet (Chris Harris) of Antigua, and his grandson and the light of his life, Marlin Mills Harris.

Loved by his sisters, Wendy Joan Smith (Gerald) of Toronto and Anne Frances Marshall (Stanley) of Ottawa, Canada, as well as nephew John Descheneau and nieces, Natalie and Sophie Malek, Kerridwen Smith and Kristen and Alexandra Marshall and his extended family, colleagues and friends.

An avid member of the Long Run Hunt Club, he truly valued those hunting friendships and shared memories. He spoke so highly and lovingly of Jeff and Ellen and Grace, Walter and Anne, Lisa and Tim, Marilyn and Uri, Jim Marcucci, Bruce and Shawna and Karen and Bill and Toody and Bruce. Margaret and Quinn held a special place in his heart. He deeply missed his friends David and Carroll. He loved his time cruising in his hovercraft with Hover Dave and enjoyed seeing the rivers of Kentucky and the northern Ontario lakes. He was a skilled farrier and teacher and master problem solver. He took great pride in the skills of Kraig, Albert and Brandon. Deeply intelligent, quirky and feisty, he will be missed.

The family would like to thank Dr. Dale Haller for his outstanding care and the wonderful nursing provided by his trio of Brianna, Dawn and Faith.

In lieu of flowers, the family would appreciate donations in John’s name to Big Brothers Big Sisters of Kentuckiana [http://www.bgckyana.org/]

Published in The Courier-Journal on Nov. 13, 2016 http://www.legacy.com/guestbooks/louisville/john-robert-mills-condolences/182484454?cid=full

© Stan Marshall (The PD Gardener)

Death, Souls, Parkinson’s and other Strangeness

Death, Souls, Parkinson’s and other Strangeness

Preface

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

Can Parkies talk about death? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Firefly: Huh, no wonder he passed away.

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

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

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

Cottage Reading 2015 Photo: S. Marshall

Cottage Reading 2015 Photo: S. Marshall

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

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

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

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

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

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

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

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

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

All things bright and beautiful,

All creatures’ great and small.

All things wise and wonderful,

The Lord God made them all.

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

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

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

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

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

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

The Old Fisherman

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

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

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

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

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

The Hitchhiker

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Where is that Bert Guy Anyway?

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

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

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

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

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

The Sentencing

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Murder in the Garden

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

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla in early October Photo: S.Marshall 2015

Mandevilla sacrifice early October 2015 Photo: S.Marshall

Mandevilla sacrifice late October 2015    Photo: S.Marshall

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parky and books IMG_4764

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

It’s all about the ‘plasticity’, baby

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

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

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

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

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

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

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

If I were a betting man ….

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

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

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

Caveat

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

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

Post Script Script

This could be a Marx Brothers script:

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

Zeppo: (Toots his horn)

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

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

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

Zeppo: (Toots his horn.)

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

(Groucho works his eyebrows vigorously)

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

(Fade to black)