About The PD Gardener

I am retired and living with Parkinson's disease. Aside from family, my loves are gardening, writing and telling stories - some true, some not. My Front Page blog posts are unapologeticaly lengthy but they are about real life with real people (mostly) and often reference a small Manitoba village named Altamont. I have an inner page called "Short, Pithy and/or Pissy Posts" in which I cover the subject matter in 750 words or less. Look for it in About. I live with my wife, Anne, and two cats, Imani and Tumelo, in Ottawa, Ontario, Canada .

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!

The School of Dance Parkinsons program Jan 2018Our 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)

 

 

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Short, Pithy and/or Pissy Post No. 4: Which Underground?

Short, Pithy and/or Pissy Post No. 4: Which Underground?

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In winter the intersection of Empress Ave., Scoles Rd., Hwy 27 N and Heritage St. in Altamont, Manitoba is as bone-chillingly cold as the infamous corner of Portage and Main in Winnipeg – before they forced pedestrians underground to avoid frostbite and injury from the beastly wind howling through the city core. Just another example of how humans try to conquer Mother Nature… if the tax base will permit.

There will be no pedestrian underpass in Altamont because… well, because Altamont is an unincorporated community within the Rural Municipality of Lorne (population 3,041 according to the 2016 census.) Statistics Canada does not deign to recognize Altamont itself as having any official population. In fact, some bureaucrat had a delightful sense of irony when s/he classified Altamont (estimated 1910 population: 100 and 2016 population: 50) as a “Local Urban District.”

I doubt that the municipal councillor in Altamont has ever felt political pressure to dig an underpass to conquer the nasty north wind at any intersection. The suggestion just begs the question, “What if they built an underpass, and nobody came?”

But there is another reason there is no underpass.  The intersection is almost famous for its Time and Space Warp (see SPPP no. 2) and the Warp is largely ineffective when operated below ground. This shortcoming was driven home to me many years ago while having a beer with a retired farmer named “Abe” in the iconic Altamont Hotel. Abe told me that Mr. Somerville, the stationmaster after the Northern Pacific and Manitoba Railroad reached Altamont in 1899, was fond of saying, “You cain’t see nuthin’ if yer six foot under.” I have no reason to believe that someone named “Abe” would lie – especially about something so germane to life and death.

When you look at the roads of egress from Altamont, the future certainly seems bleak. However, the Warp uses highly sophisticated socio – cultural geographic modeling along with temporal/spatial analysis methodology to ascertain the influence (positive and negative) of Altamont on the success and failure rates of its emigrants by analyzing the future futures, the present futures and the past futures of literally hundreds of individuals who will pass, are passing and have passed through Altamont – stopping to live a year or two, or ten, or twenty – or a lifetime. You will find that the accomplishments of those women and men are impressive and lead to the four corners of the earth and beyond.

[In technical terms the sum of such individual interactions is the Cumulative Overall Influence (COI); the downstream impact on the outside world over future generations is the Impact on Outside World (IOW); therefore, COI + IOW = Magnitude of Influence (MOI.)]

At any given time the road out looks bleak but the potential for success is great.  If you remain, you risk clogging up a system that depends on people leaving. Perversely, the success of a small town depends on its failure to thrive – forcing out-migration, which ironically contributes to its Magnitude of Influence.

Under such imperatives some residents establish strong bonds with small towns; bonds which neither distance nor death can break.  If these allegiances prevailed, there would be a steady stream of souls returning “home” each and every day. In Mr. Bishop’s words,

“Altamont was my birthplace.

Altamont was my home until I was 28 years of age.

Altamont has always been my home even now when I have been away for 43 years.

The hill east of Altamont will be my final resting place. From here I will view in all directions the beauty of all the seasons and play and laugh with those of my friends that are with me.”  

~ Lisgar Bishop in Memories of Altamont, 1884 – 1984

As for me, my family home was in Altamont for close to 17 years. I was married there … for the first time. For the next 30 years I lived and worked far away; visited infrequently; became estranged socially, politically and ideologically from the town folk; children arrived; divorce; new marriage, new family; diagnosis of Parkinson’s. Altamont became a place I used to live … but a place to which I am still contributing to its Magnitude of Influence (MOI.)

While I admit I have a fascination with Altamont’s history and the stories of those who call it home, love and gardens are beckoning my soul to a place other than the Altamont Cemetery when the time comes.

Besides, “You cain’t see nuthin’ if yer six foot under.”

(743 words)

© Stan Marshall (The PD Gardener) 2017

Short, Pithy and/or Pissy Posts No. 3 : My Answers

Short, Pithy and/or Pissy Post No. 3: My Answers

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A reader called me the old fashioned way the other day, on the telephone, to tell me that I must answer the questions I left dangling in SPPP No. 2. I hate that because it is a lot easier to ask questions than to answer them. Well, here are my answers.

Question: Are there any songs about bleak towns?

Answer: Yes, but my two favourites are both by Bruce Springsteen, My Hometown and Death to my Hometown with its compelling Celtic rhythm and lyrics accusing and convicting corporate power of bringing certain death to his hometown without the use of guns or bombs and without penalty. Released in 2012 Death to my Hometown updates My Hometown, which presciently paints a poverty-stricken future from the vantage of 1984 economic and trade policies. Together these song-writing gems form a powerful political analysis spanning four decades. The analysis is bleak and is no longer “the future” but “the present” for many towns in Canada and the USA.

Question: My future’s so bleak I have to wear [fill In blank.]

Answer: [A SAD light.] Seasonal Affective Disorder (SAD) is a problem for many who live in northern climates. Long dark winters can cause general depression (winter blues) in some individuals. I believe my mother’s circadian rhythm was sensitive to changes in natural light living as she did in northern Manitoba where the average hours of sunlight decrease from 280 in June to 85 in December and in central Saskatchewan where the decrease from an average of 375 hours in June to 75 hours in December is even more striking. SAD lights are an attempt to mimic natural sunlight alleviating symptoms for suffers.

As a slogan or hook, “I have to wear a SAD light” is an utter failure as it fails to tickle whimsy or to stir the body and mind to overcome adversity. Perhaps manufacturers and retailers of SAD lights will be happy but I just don’t see the marketing attraction myself. The bleakness in Springsteen’s passionate lyrics and music can be overcome only by changing the balance of class power as intersected by the politics of the struggle for fundamental human rights.

Question: Did I choose the path with Parkinson’s or did it choose me?

Answer: No one in his or her right mind would take an oath of fealty to Parkinson’s disease if s/he had even half an idea of what that would entail. Parkinson’s is an insidious disease that slowly and surely sucks life and independence from you and does not have the decency to kill you. I am but one of over 100,000 Persons living with Parkinson’s (PwP) in Canada and while I have suffered from the predictable decline in health for a relatively short period of time compared to many others, I assure you that I am not being overly dramatic about its effects. Walk one day in my shoes ….

Question: What happened anyway?

Answer: An interconnected series of expected events and experiences that were to be my life were nudged off course and shunted to the sidelines by an unexpected series of events and experiences that became my life. It is a happy story except that Parkinson’s threatens to write a difficult ending.

Question: Maybe it’s a Town Without Pity (Gene Pitney 1961)

Answer: In 1961 Gene Pitney’s Town Without Pity was riding a wave of middle class economic prosperity. Love and the politics of the Vietnam War were at the centre of teenage angst. The hollowing out of the American industrial heartland that spawned Springsteen’s two ‘hometown’ songs was not yet upon us. That is not to say that Town Without Pity was shallow but it is to say that the dialectic between capital and labour was not manifest as class politics in the 1960s and frankly has been barely on the radar since then. US President Trump’s election unearthed an irreverent populism with ad hoc nationalist and dictatorial tendencies. In Canada we have emerged from a decade of right wing politics to embrace once again the soft middle. If we are honest, the political mood in both countries is closer to Town Without Pity than it is to Bruce Springsteen and Death to my Hometown.

Another reason I like Springsteen: he has made 11 “surprise” appearances at the main concert of the Light of Day Foundation, which has raised more than $4 million for Parkinson’s research over the 17 years of their winter festival in Asbury Park. See also Light of Day Canada.

(749 words)

© Stan Marshall (The PD Gardener) 2017

Short, Pithy and/or Pissy Post #2: Song Titles

Short, Pithy and/or Pissy Post #2: Song Titles” is now available.

“My lover thinks I have been sitting around wasting time listening to music from the last 7 decades. … It all started with an innocent thought about the geo–cultural origins of song titles.” Read more at https://wordpress.com/page/thepdgardener.wordpress.com/10598

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Short, Pithy and/or Pissy Posts: A new feature

Short, Pithy and/or Pissy Posts is a new feature on this site devoted to well … “Short, Pithy and/or Pissy Posts” about Parkinson’s, gardening or anything really … but uncharacteristically for me, I have to say it in 750 words or less!  It is all explained in the first post which you can find here:  Short, Pithy, and/or Pissy Posts

Have a great weekend!

DIRECTIONS PART II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

DIRECTIONS PART II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

Prior to my last post, DIRECTIONS PART I: Stay werr you’re to, ‘til I comes werr you’re at, B’y!, which is the first in a planned series, it had been over four months between posts. My instinct, even though I wasn’t raised in a family with a strong religious tradition, is to confess my sins i.e., apologize for my tardiness and seek your forgiveness. However, as I was reflecting on what words would be suitably contrite, I realized that this same lax religious upbringing permits me to conclude not only that I have no obligation to confess but equally I have no reason to apologize. I have done nothing untoward. Rest assured that I say none of this out of any disrespect for you, dear reader.

In November 2016, I wrote a piece that is truthfully a “Last Post” in that it was my reportage on the Celebration of Life for John R. Mills, a man who warranted the many accolades that were thrown his way at the best wake I have ever attended.  I know that learned intellectuals and professionals studying death and dying within all types of societies have researched, interpreted, analyzed and written about the grieving process identifying its stages and concomitant behaviors of the mourners. For the last four months I have been trying to come to grips with the reality that the strikes of the hammer on the anvil were hailing the blacksmith and farrier, beloved by all, to come home.

John’s death affected me in ways that I did not anticipate. He and I shared some quite personal moments in the months (even years) before he left us – moments that gave me insights into his life and his person; moments that give me the strength to face my own future with Parkinson’s, a progressively degenerative neurological disease; moments that help me better understand my own person; and moments that bring calmness to my spiritual self. Most of those moments will remain private and confidential but there are one or two that I feel I can share.

Sometimes there is no ‘option’ in option

During the last months of John’s life, there were many decisions to be made, difficult decisions; decisions no man or woman should have to face. He had sage and respected advice from physicians, health professionals, family and friends so he did not face the decisions or their consequences alone. Still, the final burden was disproportionately his to bear.

What turbulence is created in your intellectual and spiritual self when too much ‘hard’ medical data competes unfairly with too little ‘real’ time?  Some are tempted to call this problem a “quandary,” a ”puzzle,” or a “dilemma” for which there is no correct answer. Others see it as a kind of cost – benefit analysis where the positives and negatives (upsides and downsides) are totaled and offset to inform the decision – making process. Characterizing the problem as having a binary answer (yes/no) disguises the fact that the options under consideration are most often ‘options’ in name only and each option could be equally unthinkable e.g., living longer with a medically assisted but vastly diminished quality of life or dying more immediately from the ravages of your disease on your body and mind.

Here lies W. C. Fields. I would rather be living in Philadelphia”

The language of “options” also implies that we have a say in the matter; that there is ‘free will’ and we can, not change the course of history but, choose the course of history. The heading above is the epitaph (several slightly different versions are often quoted) that W.C. Fields proposed for himself in an article in Vanity Fair (June 1925.) I guess if Fields had the final say he would be alive in Philadelphia rather than in a grave beneath a headstone in Glendale, California.  Wouldn’t we all?  More likely, he would still be in a grave but in Philadelphia rather than California.

I do not deny the existence of free will for many actions we take, or do not take, in the course of life, but does free will always exist for life and death actions/inactions? If free will does exist are we fortunate or are we fortunate if it doesn’t? If there is no higher power than you, then to whom are you accountable? What if you, as the highest power, do not wish to die but your body and spirit can no longer sustain life? What if, at the very end of life, at that moment when our Soul is to be released from its material casing, we have no choice? How does that happen; who makes that decision? What if we do not have a Soul? The list of questions is interminably long.

Living with the dying and dying with the living sucks, doesn’t it? Or does it suck only if dying has greater importance or gravitas than life? The problem is that ‘not dead’ means ‘alive’ and ‘not alive’ means ‘dead.’ In relational terms each condition should be equal; each dependent upon the other being not present. As I only know and experience “aliveness,” that is the only condition about which I can speak and it turns out that I don’t know very much about it at all.

On the positive side, I know nothing about “deadness” and I am not even certain I ever will. This is not to imply that I will live forever but that there may be no consciousness for me after death. It is all very confusing and is very much a “black hole” into which the secret code of life is absorbed after death, never to be relinquished. Perhaps, being prepared to live and to “not live” (rather than “to die”) is the best we can do.

“Tell me a story”

What could I possibly say to John that would be at all helpful? The mind often boggles at times like this but John took the lead and on two occasions he lifted one hand slightly off the hospital bed to signal that he wanted to “say” something and although he was unable to speak without great effort, he signaled that everyone except me should leave. The first time was very private and personal and shall remain that way. The second time he wanted me to tell him a story. I had been sending John copies of my blog for quite some time and I knew that the stories resonated with his own experiences and that he appreciated the humour and context. So I stood by John’s bedside and spun a few stories that had been tumbling around in my brain but hadn’t yet made it into written and more polished form. Today, you are privy (pun intended, you’ll see) to some elements of those stories in a more organized form.

Nothing says Halloween like outhouses … and a potato?

I knew that John would appreciate the particular time period within which the stories are set as well as the many threads within the stories themselves. For me though, the significance of the stories lay in the telling and in the non-verbal responses they drew from John. In those brief few moments, I was thrilled that I was able to remind him of what it is like to be an eight year old boy – a boy who plugged Bob Lang’s sump pump hose with a potato on Halloween night, causing a minor flood in his basement which thankfully was unfinished and unfurnished.

I am sure those of you with sump pumps would like to take that boy and wring his neck, as water in the basement is not what any homeowner wants and a plugged drain pipe could overheat the sump pump motor and blow a fuse or trip a breaker. (See note 2) I suppose it could also start a fire if there was no thermal relay switch. My recollection is that the potato plug in Bob Lang’s sump pump hose caused only minor flooding. I heard no talk of fire or other damage.

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Who plugged the sump pump hose with a potato anyway? Photo: S. Marshall 2017

It is well known that boys over the age of nine, teenagers and immature adults look forward to playing the “trick or treat” game on Halloween night. The idea is simple; if a residence or business did not give you a treat then they could expect a trick to be played on them. Sometimes the older tricksters did not even give the “treat” part a chance; they just went directly to the trick. Tricks came in a wide variety of forms: soaping windows was quick and easy to do but slow and labourious to remove; throwing hay or straw bales on a roof top required the strength of young men; anything that wasn’t tied down and was smaller than a car got moved; but the most common trick was to tip over the outhouse. Almost every house in Altamont had at least one outhouse; likely a “two-holer” but there are many with only one hole. I remember seeing a three-hole outhouse on my grandparents’ farm when I was a kid. I thought it was hilariously funny but you never know, perhaps the number of holes is determined by the size of family … or some other social or economic variable. I am sure someone has done an analysis and with power of Google I could find out but this not the time to wander too far from the subject matter.

Cottage outhouse

A “one-holer” outhouse was common for a residence  Photo: S. Marshall

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A typical outhouse for a business with separate entrances for “Men” and “Ladies”   Photo: S. Marshall

Humour and Horror in the ”honey pit”?

Halloween is not all Hollywood, horror movies and Freddie Krueger. The horror of the “honey pit” predates the Nightmare on Elm Street movies and seems to have persisted over time. One recurring story is that a specific someone e.g., Ed Bulmer, Oz Jackson or Bob Hetherington, was in his outhouse when it was tipped over on its front, blocking the door. These images produced roars of laughter at each telling. Whether it is true or not is hardly the point. Strangely, I do not recall any women being named as someone, pants down, struggling to get out of an outhouse lying on its door in front of its “honey pit.” In fact, there are very few visual sightings of women entering or leaving the outhouses at any time and certainly none at Halloween no matter how strong the call of nature might be.

Sometimes the perpetrators got their comeuppance and one or more of those (no names will be provided here) tipping the outhouse inadvertently found himself (it was always a male) in the “honey pit,” having slipped during the deed. Even though I had been present at a few tipping events when I was young, I never witnessed such misfortunes – and it certainly never happened to me!  Still, it could not have been that hard for someone to nose out the truth after you have fallen into a pit of human excrement and piss, but perhaps like a cat that failed in its leap onto a precarious perch, you just preen for a second or two after falling and walk away nonchalantly as if nothing happened.

It is a safe bet that at least once in the last 130 years someone in Altamont was in the outhouse when it was tipped over and at least once a trickster did fall into the pit after giving the outhouse that one last mighty shove to break the centre of gravity.

The origins of Halloween go back thousands of years and bear resemblance to traditions of the Celtic harvest festivals. Interestingly, in the 1880s and 1890s many Irish immigrants passed through the Ottawa Valley (Merrickville, Carp) and other parts of southern Ontario (Lucan) on their way to settle in southern Manitoba around Musselborough which was founded in 1884 and later renamed Altamont. Undoubtedly, their Irish humour was fertile ground for tricks at Halloween and they relished the opportunity to regale one another with tales of forays on this night when the authorities turned a blind eye to minor infractions. It is not hard to see how stories of falling into the “honey pit” or of being in the outhouse when it was tipped over on its door, the only exit being over or through the foul smelling and disgusting looking pit, would become standard fare whenever they gathered.

I tend to think there is a kernel of truth in most stories that persist over time and the rumours associated with outhouse tipping are no exception. As if to prove this very point, the following entry in the book of memories for the 100th anniversary of the founding of Altamont was written 33 years ago and speaks to the general nature of these outhouse capers at Halloween.

“Halloween was always an exciting time in Altamont, especially in the days before in-door plumbing. It could be a dangerous time too. You had to be careful where you walked. More than one in–a-hurry, prankster found himself the victim of a fate worse than death, having fallen into an uncovered toilet hole.”

“Those outhouses must have been built well to survive the annual “pushing over.” Sometimes they were hauled out into the road and used to block traffic.”

“The most famous back-house in Altamont was also the most fortified. In fact, it still exists today. Bob Lang secured his one-holer with barbed wire. Most years he was successful in keeping his out-house at home.”

“Just when the boys were making some progress in getting his toilet over, old Bob would come running from his house waving his hockey-stick cane in the air. Everyone would scatter only to try again later.” ~ Allan Dawson in Memories of Altamont, 1984 -1994, compiled by the Altamont Centennial Committee.

Yes, Mr. Dawson identifies the same Bob Lang I referenced earlier in the sump pump potato plug incident. Bob seemed to be a target for many on Halloween. Perhaps, it was the challenge of his fortified outhouse and, appropriately enough, the danger of being ‘slashed’ by that hockey stick cane.

Memories of Altamont 1884 -1984 cover

Fire??!!

John was a great fan of stories that had action and he loved it when the characters were hit quite literally over the head as part of the story line. It goes almost without saying that when I was fully engaged in the stories of the outhouse tipping shenanigans, John was more animated and his eyes were visible under their closed lids. I am not sure what he enjoyed the most: the idea of a general assault on outhouses at Halloween; the tipping and dragging of outhouses onto the street to block traffic; the possibility of someone actually being in the outhouse at the critical moment when its centre of gravity was breached; the irony of a perpetrator falling into a cesspool of piss and shit; or the idea, which I heard more than once during the outhouse raids, “Let’s set fire to the fucker.”

Fire was no stranger to Altamont and I am researching a number of fires over the 130 years of Altamont’s existence. As my research is incomplete at this stage I cannot delve into those events too deeply but let’s consider the following questions: What if the Halloween tricksters did set the outhouse on fire? What if the idea caught fire, so to speak? Would there be a conflagration of “shitters” the likes of which the world has never known? Not likely, but even though Altamont was small, setting fire to one or more outhouses in the community would make a statement far beyond the usual Halloween “pranks.” Flaming outhouses are sure to hit the news – even though cell phones were not yet in widespread existence and video of such events would be difficult to find. Rest assured the concept of mens rea would be applied and charges would be laid.

Environment, outhouses and Parkinson’s

In the 1950s and 1960s small villages and unincorporated Local Urban Districts (LUDs) such as Altamont did not have public utilities such as water and sewer. Only a few houses had septic fields and the “water utility” was an electric pump drawing water from a well on the property. But in truth most houses had no electric pump; no running water; no flush toilet; no septic field; and the waterworks was an old creaky hand pump drawing water from a well directly below.

Most people had outhouses where they went to “do their business” or “honey pits” into which they emptied a “honey bucket” from the house, a task I was given when I was about 8 years old, once a day, every day after my sisters had gone to bed. I can still recall the weight of the honey bucket in my hands, stink trailing behind me as I walked through the kitchen and back porch out into the back yard – the air fresh and clean until I passed through. The honey pit was located at the northwest corner of our lot beside our rhubarb and as far as possible from our well but still only a distance of 10 – 12 meters. Cleverly disguised as a squat wooden square box, the honey pit sat there innocuously and surprisingly stench free with a padlock securing the trap door entrance on its top. I always fumbled with the lock and opened it with trepidation as it was usually after dark and there were no lights in that corner of the yard. I don’t know, maybe I expected a monster with extremely foul breath and dripping with soggy toilet paper and excrement to jump out the moment I opened the hatch! I think dad must have tossed in copious amounts of lime to cut the smell and reduce fly and pathogen problems, as I was always surprised that the smell didn’t knock me over and there were few flies when I opened the door

Drinking water and water for bathing was drawn from wells that were dug only a few meters from the outhouses and honey pits. So how far should an outhouse be from a well? I thought this should be an easy question to answer. Turns out that it is not. At the one extreme, some municipalities in Canada prohibit outhouses outright. At the other extreme, unorganized townships have no restrictions or regulations whatsoever … build your outhouse wherever you want – and better yet, don’t tell anyone even if you do build one. It is the best thing about unorganized townships, ‘don’t cha know’ (facetiousness is dripping here). Other people argue that a “few feet” is OK as long as the pit is above the water table. I agree that deep wells accessing  underground aquifers far from the surface pits of outhouses would be quite safe.

Surely, the juxtaposition of drinking water sources and the storage and disposal of human waste does matter and close proximity does not make for a healthy environment. When I was first diagnosed with Parkinson’s disease, I wondered if sanitation issues and/or contaminated well water might be factors contributing to the development of Parkinson’s in an individual.

Well … what about the well?

The well in our house in Altamont was directly under the kitchen. It was a hole about five feet in diameter and about 15 feet deep. There was cribbing for the first five or six feet and the whole thing was covered by a large piece of 3/4 inch plywood forming a landing at the bottom of a set of stairs made from rough-hewn timber, leading to an unfinished basement. Occasionally my father would take the cover off to peer into the depths to determine the water table. About three feet to one side a separate hole about three feet deep housed an electric sump pump to keep the basement from flooding should the water table rise too high.

I have no idea how often a well should be cleaned if ever, or what should be used to clean it. I do recall one time my father cleaned our well. It happened one July when I was about 14 years old. It was a hot Saturday evening during haying season (it’s beginning to sound like a country and western song here) when I returned home from a long day of riding the hay rack behind a baler spitting out alfalfa bales in rapid succession. [Interestingly, the sway and rock of the hayrack across the field is not unlike the feeling that I currently experience with my Parkinson’s balance and peripheral neuropathy proprioception issues.]

I arrived home hot, sweaty and thirsty, thirsty, thirsty! I grabbed a tumbler out of the cupboard, went to our water pump in a small alcove just at the top of the stairs to the basement. I worked the pump handle up and down a few times to fill the tumbler with water that was not extremely cold but as cold as I was going to get. I tipped the tumbler up and let the water drain into my throat. About half way through the last gulp, a very big gulp I might add, I sensed that this glass of water was not all that it promised… or maybe it was more than it promised. I could feel something disturbing in my mouth. I suppressed the urge to swallow and I suppressed the urge to gag, although I don’t know how. Instead, I willed my self to spit the contents of my mouth out into the porcelain sink. A three to four inch long worm began wriggling across the slippery surface. I don’t know how I hadn’t spotted it before tipping the glass all the way to vertical but rest assured that I have pre-checked every glass of water I have ever had since then. It is something I will continue to do into the future. The worm in a glass of mezcal repels me and I can hardly look at it never mind have a sip!

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A word to the wise: always check the bottom half of your glass  Photo: S. Marshall

Of course, my mother was extremely distraught by my account of the worm in the drinking water. The very next day, dad and a neighbour took the cap off the well, pumped it dry and with a rope around his waist dad descended into the well with a brush and sponges. He scrubbed the walls and cleaned the intake on the pump. It seemed to make my mother much happier if nothing else.

I doubt that a worm or two in your well causes Parkinson’s but I do recall that dad was concerned about high levels of arsenic and other contaminants in well water in the area. Even so, I don’t remember our well water ever being tested although I do recall dinner table conversation that it should be. In the end analysis, I think we were too poor to pay the test fee plus the shipping cost to Winnipeg. Dad likely relied on the tests that others in the community had obtained as being indicative of the readings that our well would have. In any case, I don’t think the arsenic was much of a problem but I cannot say the same for the chemicals and/or metals the ground water may have contained, although studies are inconclusive as to the consequences.

We lived in an agricultural area and the 1940s, 1950s and 1960s were times of intensive usage of pesticides on farms, and I know that our father used these same practices in our gardens. (See Note 3.) As always there is considerable difficulty in obtaining reliable data for pesticide usage and funding for research on the health impact of pesticides on the population is relatively scarce. Still, since 2003 seven provinces including Manitoba have passed legislation banning the use of pesticides for cosmetic (non-essential) use. Saskatchewan, Alberta and British Columbia are the holdouts. The definition of “cosmetic use” ranges from use on lawns only to use in all elements of landscaping. Most provinces have some exceptions.

Those initiatives and laws are all well and good but the 60 years between 1940 and 2000 were pretty freewheeling when it comes to pesticide usage. The current legislative bans and regulations come far too late for those of us in our 50s and 60s who are just now being diagnosed with Parkinson’s as we could have been exposed to the pesticide as many as 50 years ago. Indeed, it is much more likely that we were impacted by pesticide use than by the proximity of outhouses and honey pits to well water.

There is also a possibility that some metals, oil and petroleum products seeped into the ground from nearby industry. Whether it (whatever “it” is) ever reached the water table in our case I cannot say as the details were buried forever when our house and the industrial buildings were torn down and the area redeveloped.  In other words, none of these possibilities can be verified, no conclusions can be drawn and all speculation will remain just that, speculation.

I suppose that every Person with Parkinson’s (PwP) has asked two questions: what causes Parkinson’s disease and why me? Do you know that this year, 2017, is the two hundred year anniversary of Dr. James Parkinson’s famous work, An Essay on the Shaking Palsy, which established the disease as a medical condition named after Dr. Parkinson. After 200 years of study the question as to what causes Parkinson’s has yet to be answered.  Scientists are coming ever closer as they research proteins such as alpha-synuclein that misfold and form Lewy bodies that are present in the brains of all those with Parkinson’s disease. Nevertheless there are gaps in the research indicating that perhaps they  are not isolating the precise genetic factor and protein or that the cause is more multifaceted than we care to believe e.g., other factors such as environmental exposures may be complicating or confounding features of the cause(s).

Is there a link between poor sanitation and Parkinson’s disease?

There are many references in the literature to the links between environmental factors and Parkinson’s disease. Could there be a link between poor sanitation and Parkinson’s disease?  I suppose that anything is possible given that a definitive cause of Parkinson’s has not been isolated, but it is not probable. I have not seen research reports showing a correlation between the presence of outhouses or “honey pits” and the incidence of Parkinson’s or other neurological diseases. I am certain that it is not desirable to have human waste “honey pits” in close proximity to wells providing drinking water as it increases the likelihood that insects can pass diseases back to the human population. Nevertheless, I don’t think such proximity was a contributor to my Parkinson’s.

Pesticides are a trigger

Researchers have long suspected a correlation between the incidence of Parkinson’s disease and the presence in the agricultural environment of pesticides. The authors of a newly released (April 2017) literature review and meta-analysis conclude

“ …there is now strong evidence that exposure to any pesticide involves a ≥50% increased risk for developing Parkinson’s disease.” (Gunnarsson and Bodin, 2017)

Let’s be clear though, most research and considered academic writing on this matter is careful to highlight that environmental exposure to these toxins is not sufficient in and of itself to develop Parkinson’s. In order to develop Parkinson’s a person must already possess a genetic marker for Parkinson’s that is then triggered by the environmental factor. Neither exposure to toxins nor possessing the genetic marker is sufficient to result in Parkinson’s but together they may result in Parkinson’s. Not very convincing is it? But, on the other hand it is encouraging that we at least have some leads.

“In conclusion, this meta-analysis provides evidence that pesticide exposure is significantly associated with the risk of PD and alterations in genes involved in PD pathogenesis.” – Ahmed, H. et al. in Biomed Pharmacother. 2017 Apr 13;90:638-649.

“As a neurogenetecist, I’m prejudiced to say that people have a certain proclivity that resides at the genetic level which predisposes them to environmental insults—whether they be pesticides, well water, living in rural areas, or trauma, possibly.” – Northwestern University neuroscientist Teepu Siddique as cited in The Atlantic, “The Brain of a Fighter” by James Hamblin, June 2016

There is also research, although not as strong as the chemical toxin research, that supports the conclusion that well water with high levels of iron, mercury, manganese, aluminum and other by-products of industry are linked to the increase in incidence of Parkinson’s disease. These metals leach into the water table or enter underground streams and aquifers to be drawn on through wells and consumed by the population as drinking water.

Summary offence (misdemeanor) or indictable offence (felony)?

Before I forget, we do need to return to the sump pump potato plug case to tie up a few loose ends. One of those loose ends is the question of whether the perpetrators of Halloween pranks were “mischievous” or “rotten to the core?” I prefer to think mischievous, as it was a different time then, a different morality. Pranks were expected on Halloween. Still, is a potato stuck in the sump pump hose a prank of a different order than an outhouse tipped or moved into the street to block traffic i.e., was the potato incident an “indictable offence” (felony) and the outhouse tipping a mere “summary offence (misdemeanour)?” I have bracketed the terms “felony” and “misdemeanour” even though those terms have been abolished in the Canadian legal system because they still evoke an intuitive understanding of the relative severity of the offence. I have my own view and when I asked John for his opinion his face brightened a little and I knew that he had experience on both sides of this question and there was a discussion to be had, if only he had the strength and ability to talk. I like to think that we wouldn’t be far apart in our interpretation.

Bob Lang's house front view 1982

Bob Lang’s house (front view) Photo: S. Marshall 1982

It seems that Bob Lang spoke to the parents of a different young boy (let’s call him “H”) accusing “H” (wrongly) of the prank. In keeping with their values of respect for elders and discipline for their children, the parents believed Bob and punished “H” accordingly despite his wailing and vigourous protestations that he was not guilty.

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Does this look like a kid who would plug your sump pump hose?

At this point I could tell by some slight movements of John’s mouth muscles and the gentle squeezes from his hand in mine that he could identify with the first young lad who was in truth guilty not only of the potato caper itself, but also guilty of not confessing to the deed (a mischievousness but cowardly act of omission) after his friend (“H”) was wrongly accused and subsequently punished. I knew that John empathized with “H” who was wrongly accused – although I know also that John would find the fact that the wrong boy was punished to be tremendously funny especially if he (John) was the true guilty party.

Bob Lang's house back view 1982

Bob Lang’s house (rear view) where the sump pump hose was located. Photo: S. Marshall 1982

Straw bales burn better than outhouses

To my knowledge no one ever acted on the suggestion to set fire to the outhouses in Altamont at Halloween. However, I do recall that a number of straw bales were set on fire about a half-mile south of the village. It is a strong memory for me, not because I actually saw the bales blazing, but because an RCMP Constable later interviewed me as to my whereabouts on Halloween and whether I could say for certainty that I was nowhere near the burning bales. I was sitting in the driver’s side backseat of the RCMP cruiser while the Constable sat in the passenger side front seat with his clipboard (no computers on those days.) We were well away from others and thankfully well away from my father and his failing hearing – hearing that could be cured with faith-healer-like speed if the conversation was interesting enough.

A second Constable was rounding up a few other local lads to be interviewed in the search for the straw bale pyromaniac. I had no problem in convincing the Constable I was not in the vicinity of the fire … as I was busy sticking a potato in Bob Lang’s sump pump hose. The Constable laughed and said he had no report on such an incident and that I shouldn’t do that sort of thing.  At that moment I knew the policing arm of the state, rightly or wrongly, ranked a potato in a sump pump hose at Halloween to be similar in severity to outhouses tipped on their sides, stinking up the neighbourhood. i.e., they were summary offences at worst and forgivable on Halloween with no charges laid. Fire and arson, on the other hand, were clearly matters of a higher order – indictable offences –  and the RCMP were looking to lay charges.

The Constable dismissed me from the cruiser and called the next kid in line to jump into the rear seat. As fate would have it the next kid was “H,” the very same kid who was punished by his parents for the Bob Lang sump pump hose potato plug caper even though he was innocent. It is a good thing that ”H” did not know who was actually guilty of “his” crime and it seems that the Constable never mentioned it to him.  Perhaps “H” has been searching for the real potato prankster for the past 60 years?

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This kid probably plugged the sump pump hose. He looks like a hood to me!

I never heard another word about the potato plug in the sump pump hose caper or the straw bales which “spontaneously combusted” in Fraser’s field. The petty pyromaniac pranksters (if alliteration for effect can be overdone, this is probably an example) were never found. If there are any outhouses remaining (and I believe there are many,) they continue to be “at risk” each Halloween. On the other hand, the risk of a potato in the sump pump hose attack is relatively low.

Is mischievousness only a children’s thing?

On Halloween nights there are acts of commission and acts of omission which fly beneath the radar of the legal system because they meet a reduced community standard on Halloween. The more that these actions bump against the outer edges of that community standard, the more humourous it is until there is a breaking point. Remember how your mother admonished you to stop waving that sharp stick because you will take someone’s eye out? It is exactly like that; it was all very much fun until Tommy lost an eye.

John R. Mills was a man who loved stories where the action is on the edges of acceptable community standards and/or legality – and the subject matter didn’t have to be as serious as murder either.  He had a keen sense of small-scale mischievousness and that mischievousness fuelled his ability not only to maintain a boy’s view of the world but also to engage in adolescent behavior from time to time during his adult life. I sense that we shared this connection.

On the other hand, what if I read John’s non-verbal responses incorrectly? After all, as a young man he was a member of the mounted force of the Toronto constabulary and he was a superior horseman and rider all his life, winning cutting championships in Kentucky and Kansas. Perhaps he was imagining himself in the role of a mounted officer with the power of a trusty and fearless police horse snorting underneath him as he provided crowd control on Halloween night. In the end it matters not as John was not one-dimensional in any respect and I know he would have revelled equally in a detailed account of police horse vs prankster on Halloween.

A larger moral message?

As I looked at John’s face, eyes alert under the closed lids, a slight smile on his lips, I knew that I had transported him to a different place, free from the weight of medical evidence, medical procedures and medical consequences – all of which pointed to him becoming a medical and demographic statistic of the worst kind.

I sense that some of you may be looking for a more meaningful lesson in morality to emerge from these small town shenanigans and my telling of those stories to John. Sometimes in life there isn’t an obvious moral lesson. Sometimes, when the conditions of life warrant, it is just a matter that we, like John, deserve a few short moments away from the serious (sometimes life and death) decisions men and women have to make. We should be granted that respite.

I could end this post here except for the fact that the end is not here … for those who wish to argue over whether actus reus (the act) and mens rea (you meant the act to have the consequences it did) were both present in the potato plug sump pump case and that a “duty to act” was breached in the act of omission (not confessing) such that a crime was committed… but because I cannot “plead the Fifth” in Canada I am just going to mutter “mea culpa” under my breath and move on … and I would suggest you move on with me except that …. the questions about Parkinson’s go unanswered if we do.

Afterword

What causes Parkinson’s? It seems obvious to me that outhouses and poorly located “honey pits” are not high on the list of suspects. More and more the research data is leading us to the conclusion that pesticides, insecticides and fungicides are prime suspects as co-conspirators and should be investigated with increased vigour and resources. Think of it this way: the environmental violations of outhouses located too close to a water supply are summary offences or misdemeanors compared to the indictable offences or felonies that are negligence and misuse in the development and application of chemical toxins in the environment.

I am no lawyer but it seems we are closer to establishing that, at least for some portion of the Parkinson’s population, there is an actus reus but is there no agreement that there is mens rea by those who develop, manufacture, sell and use the toxins i.e., they did not intend that the chemicals to contribute to an increase in neurological diseases of which Parkinson’s disease is one. But should they have known? After all, they were developing chemicals that work by attacking the nervous systems of those pests they were trying to kill. Would that not twig someone to ask the question, what does this mean for human neurological systems? If it did, then did they find that it was without cause for concern? Did they downplay the consequences? Did they willfully ignore the signs? Is there an act of omission? Did someone breach a duty to act? Are we confident that there is no corporate interference with, and influence on, the research process?

There are so many questions, so little real time and so few resources. The weight of the evidence is beginning to accrue towards a conclusion that exposure to pesticides is related to Parkinson’s disease but don’t hold your breath for chemical corporations to step up and say, “mea culpa”;  to start making amends (reparations is probably too strong) through financial contributions to independent Parkinson’s research; and to defray the costs of pharmaceuticals and medical/therapeutic devices and programs which enhance quality of life for Persons living with Parkinson’s.  That would indeed be a radical change in direction.

NOTES

Note 1:

Definitions:  An “outhouse” is defined as a permanent private privy used as a toilet and situated on a permanent privy pit usually 3 to 6 feet (1 to 2 meters) deep within which human waste is kept, maybe forever. The outhouse is located on private property or at a private residence and serves the sanitation needs of the owner and/or tenants. For further clarity, an “outhouse” is not equivalent to a temporary, transportable, commercial “port-a-potty” used on construction sites and at outdoor entertainment sites and fairgrounds. Such port-a-potties as the name suggests are built to be transported and have an internal waste holding tank that is designed to be emptied at a sanitation facility.

Disclaimers: 

I do not advocate that outhouses be tipped at Halloween or any other occasion nor do I condone such action as serious injury and/or property damage may result.

I am aware through social media sources that port-a-potties are overturned as a prank from time to time. I do not condone such behaviour.

I do not condone the blocking of sump pump hoses in any manner. Serious property damage may result.

Note 2:  As I write this post we are experiencing very heavy rains in eastern Ontario and western Quebec. Many homes have been flooded and their residents evacuated. It is not my intention to diminish the severity of these events by making light of the consequences of the potato plug in the sump pump hose. The situation as described, in Altamont at Halloween of that particular year is not comparable.

Note 3: I follow the convention used in most of the research literature and government documents where “pesticides” is an overarching concept that includes insecticides (insects), herbicides (plants and weeds), and fungicides (fungi.)

APPENDIX: Outhouses are a serious measure of health and sanitation

WaterAid reports that in 2015 there were over 65,000 Canadians (0.2% of the population,) mostly in rural areas who do not have safe reliable access to toilets inside their homes. The UK has over 500,000 (0.8% of the population) citizens without proper inside toilets. Interestingly, WaterAid claims the USA is approaching 0% of pop with just slightly over 36,000 citizens without adequate toilets, bettering both Canada and the UK.

Only 17 countries in the world – including Australia, Japan, South Korea, Singapore and Saudi Arabia – have reported that just about every single household in the country has a safe, private toilet. (WaterAid 2015)

These numbers probably represent the best-case scenario and unfortunately we will never know the actual numbers as the question on indoor toilets is no longer asked routinely on census forms in Canada and other countries. The Washington Post puts the 2014 estimate as considerably higher at over 1.6 million households in the US without adequate indoor plumbing facilities i.e., they do not have one or more of the following: a toilet, a tub, a shower or running water. In any case, many thousands of outhouses are still in use as the primary toilet facility for households, and many more outhouses serve as secondary or back up facilities for use when the indoor toilet is otherwise occupied.

When my parents moved to an apartment in The Pas, Manitoba in the early 1970s after our father got a job at the pulp and paper mill there, I recall how excited my mother was that they were on town water and sewer. In fact, it was the very first time (ever!) that our mother had lived in a home with running water and a flush toilet. Needless to say, she was thrilled!

REFERENCES and RESOURCES

Ahmed H, Abushouk AI, Gabr M, Negida A, Abdel-Daim MM, “Parkinson’s disease and pesticides: A meta-analysis of disease connection and genetic alterations.” https://www.ncbi.nlm.nih.gov/pubmetd/28412655

Alberta Environment and Parks, http://aep.alberta.ca/water/programs-and-services/groundwater/documents/AlbertaWaterWellSurvey-Report-Dec2010.pdf

Backcountry Canada Travel, http://www.backcountrycanadatravel.com/outhouse-culture-canada/

Canadian Centre for Occupational Health and Safety, Fact Sheet on Pesticdes http://www.ccohs.ca/oshanswers/chemicals/pesticides/general.html

Canadian Journal of Neurological Science https://www.cambridge.org/core/journals/canadian-journal-of-neurological-sciences/article/geography-drinking-water-chemistry-pesticides-and-herbicides-and-the-etiology-of-parkinsons-disease/B8A09AAE44121012B905C358CCE9A8EF

Cosmetic Pesticide Ban Manitoba https://cosmeticpesticidebanmb.wordpress.com

Cottage Life http://cottagelife.com/environment/10-things-you-probably-didnt-know-about-outhouses

Grandpa Remembers: Tipping over Outhouses, July 25, 2010. http://grandpa-remembers.blogspot.ca/2010/07/tipping-over-outhouses.html

The Guardian, “Can you catch Parkinson’s?” https://www.theguardian.com/education/2002/apr/04/medicalscience.healthandwellbeing

Gunnarsson, Lars-Gunnar and Bodin, Lennart,“Parkinson’s disease and occupational exposures, A systematic literature review and meta-analysis,” Scandinavian Journal of Work, Health and Environment, online first, April 2017

Hamblin, James, “The Brain of a Fighter” in The Atlantic, June 8, 2016 https://www.theatlantic.com/health/archive/2016/06/ali-and-parkinsons/485798/

Kashatus, William C, “Outhouse has faded from region’s landscape,” in Standard Speaker, June 26, 2011 http://standardspeaker.com/outhouse-has-faded-from-region-s-landscape-1.1165644

Law Lessons, http://www.lawlessons.ca/lesson-plans/2.1.definition-and-principlesb

Mayo Clinic, http://www.mayoclinic.org/diseases-conditions/pinworm/basics/causes/con-20027072

Parkinson, Dr. James, Essay on the Shaking Palsy, originally published as a monograph by Sherwood, Neely, and Jones (London, 1817). Republished by J Neuropsychiatry Clin Neurosci 14:2, Spring 2002.

Parkinson’s Disease Foundation, http://www.pdf.org/environment_parkinsons_tanner

Parkinson’s Saskatchewan, http://www.parkinsonsaskatchewan.ca/pd/nd.html

Popular Mechanics, http://www.popularmechanics.com/home/how-to/a3896/4305543/

Small Cabin, http://www.small-cabin.com/forum/5_781_3.html

Summers, R. (2010). Alberta Water Well Survey. A report prepared for Alberta Environment. (University of Alberta: Edmonton, Canada).

Survivopedia, http://www.survivopedia.com/waste-disposal/

Warick, Jason, Canadian Broadcasting Corporation News, Saskatoon, “U of S, prof under fire for Monsanto ties,” May 17, 2017 http://www.cbc.ca/news/canada/saskatoon/u-of-s-prof-under-fire-for-monsanto-ties-1.4100399

Washington Post, https://www.washingtonpost.com/news/wonk/wp/2014/04/23/1-6-million-americans-dont-have-indoor-plumbing-heres-where-they-live/?utm_term=.42d2da15b8dd

WaterAid, IT’S NO JOKE: The State of the World’s Toilets 2015 Its_No_Joke_2015_the_state_of_the_worlds_toilets.pdf

Wikipedia, https://en.wikipedia.org/wiki/W._C._Fields

© Stan Marshall (The PD Gardener) 2017

 

LIST OF POSTS IN THIS SERIES

DIRECTIONS: Taking the Scenic Route to Parkinson’s and Beyond

DIRECTIONS Part I: “Stay where you’re at ’til I comes where you’re to, b’y“

DIRECTIONS Part II: Stories of Halloween, outhouses, potatoes, pesticides, Parkinson’s and mea culpa

COMING SOON!

DIRECTIONS Part III: (Working title) Detours and your GPS 

 

DIRECTIONS: A Series of Posts on Taking the Scenic Route to Parkinson’s and Beyond

DIRECTIONS: A Series of Posts on Taking the Scenic Route to Parkinson’s and Beyond

Foreword  

This post is the first in a series called Directions: Taking the scenic route to Parkinson’s and beyond. I explore some of the ‘things’ that have changed, are changing and will change the ‘direction’ of my life. I know, ‘things’ is a very imprecise word and is overused to refer to almost anything (well, there you go, eh?).

Do you know that delay and equivocation in decision-making is one of the many non-motor symptoms of Parkinson’s? I kid you not. I am not going to blame all my procrastination on Parkinson’s but the title of this post eluded me for a very long time. It did not come easily. It rarely does but this time it was doubly difficult. I kept delaying a final decision and even now I am not convinced I have hit the right chord. You see, words are tricky things – double entendre, multiple meanings, concepts nested within concepts, different levels of discourse with different intellectual and cultural origins. Sorry, but lately I just can’t help but be amazed by words and language. It is as if I have been near-sighted all my life and then thrown abruptly into a world where my micrographia, an early symptom of Parkinson’s disease, makes it impossible to read my own handwriting but is also, quite magically, a feature of enlightenment. It is all a matter of perspective.

At one point it occurred to me that perhaps I should follow journalistic practice and task someone else with the responsibility to decide on a title. I remember being amazed when I first learned that journalists don’t (at least in those days) write their own headlines. That explains why over the years I have noticed a few headlines that are out of sync with the text of the article. One of my favourites is an article reporting on the government of Sri Lanka sending a representative to an international meeting. The headline read, “Lanka plans to attend.” It is so nice to know that Ms. Lanka has sent in her RSVP.

Eventually, I settled on the title: Directions: A Series of Posts on Taking the Scenic Route to Parkinson’s and Beyond. Of course, that was some time ago as I went through further periods of procrastination and indecision about the content and order of publication for the first few posts. Stay tuned as this is still a work in progress.

The idea of exploring the many different directions of my life has been tumbling around in my brain for quite some time. It should be simple enough, don’t you think, to articulate how I got to be the person I am … at this moment…. in this place… with a traceable historical timeline complete with events and documents? You would think so but it is never that straight forward, is it?   My research and rough drafts started out smoothly enough but it soon became evident that the process of uncovering, analyzing, interpreting and communicating the direction of one’s life is a daunting task and, dare I say, disorienting, unless you have a reliable metaphorical gyroscope to stabilize the entire endeavor.

Unfortunately, the temptation is to write a chronological account and that turns out to be deadly boring and resembles an application for life insurance. I quickly scrapped this approach. I once worked for someone who would comment on my work by saying, “I don’t know what I wanted… but this isn’t it.” There was never a reason given as to why it didn’t meet the grade or what I should consider doing to correct the shortcoming. The lack of feedback meant that I had to become skilled at listening, guessing, extrapolation, and interpretation in order to survive. While these are very useful skills they are quite inefficient as tools. Am I being reduced once again to a guessing game, but this time it is trying to figure out the nuances of my own life so that I can understand myself? Whoa, that sounds like I should be booking some couch time with a professional. We’ll leave that for the moment.

Taking a small step back, I can safely say that a chronological “listing” or cataloguing of ‘things’ that I think are important is not my primary objective. Oh, there will be ‘things’ and ‘events’ but they must be accompanied be “the ‘stuff’ of life” i.e., by whatever makes the static, dynamic. My trusty thesaurus suggests that “stuff” is a synonym for ”things” but that is not how I see it. For me “stuff” is what gives “things” life but you should also know that: “stuff” can lay dormant for years and be resurrected with one fortuitous nudge or change in ‘direction’.

While I am at it I may as well clear up a few other potential ambiguities. When I say the “direction” of one’s life, I do not mean ‘achievements,’ ‘goals,’ ‘legacy,’ or ‘good deeds,’ which can sum up one’s worth on earth. Neither do I mean ‘destination,’ or ‘defining moments.’ I am not trying to reach nirvana, to go to Mecca, or even to see Altamont, Manitoba one more time. And if I wait until I win the Nobel Peace Prize or equivalent before I consider my life to be worthy enough to bring into the spotlight, I will be waiting a long time. That doesn’t mean I won’t go places or that I won’t live a full, useful and worthy life such that people will speak well of me after I am no longer physically present; it just means that in as much as these form part of the ‘direction’, they are not influencing agents with the ‘stuff’ necessary to alter course, those ‘things’ (positive and negative) that have ‘nudged’ the ‘trajectory’ of a life onto a slightly different ‘track.’

Marshall house  in Altamont Manitoba

The house of my youth – both are now gone Photo: S. Marshall 1982

Being astute readers as you are, you know that the word “direction” has many meanings and nuances. For the sake of clarity, I rarely use the word “directions” to mean “instructions” so I will not be issuing recipes for matrimonial cake; or shop instructions on how to build a three – story 15 unit wren house; or instructions on how to make a snowflake quilt. When it comes to matters of life, each of these approaches would be tantamount to telling you how to live your life. No matter how much I might want to tell you how to live your life, I won’t. Rather, in this series I am content enough to expose the vectors of my own life such they convey a more complete understanding to me … and to others whose eyes may pass over these words.

The ‘things’ and ‘stuff’ I find most intriguing and insightful are usually small and maybe insignificant to others. Why they are intriguing may not be evident immediately and might be revealed only upon focused reflection at a much later time, but know this, the consequences of ignoring a small error in measurement in carpentry can be monumental when you get to the corner or to the top of the wall. The old saw (no pun intended), “measure twice, cut once,” has broad metaphorical applicability to all areas of life.

In sum, life is not a curriculum vitae or a compendium of artifacts; it is a force inherent in every aspect of being, no matter how exciting or how dull and insignificant it appears. This force is integral to every life as it establishes the ‘tendencies’ within the ‘direction’ of life. Or put another way, “I didn’t know that the little ‘things’ would turn out to be so big and that so many ‘factors’ can influence and change the parameters of the original course.” We shall leave aside the question of how the original course is set in the first instance for the moment. Right now, my task is to illustrate ‘stuff’ in the comings and goings of everyday life.

Altamont MB gallery_128_2013_75075

Altamont, Manitoba 1985 Photo: United Grain Growers

There is a Buddhist saying, ”Happiness is a journey, not a destination.” It has been echoed by many others including Ralph Waldow Emerson, Aerosmith, theologian Lynn H. Hough substituting slightly different words for “Happiness” e.g., love, religion, success, etc. I believe we should indeed enjoy the journey as life has a rather inhospitable destination (dead is dead) for those who do not believe there is a Heaven.

I prefer to think of this post as a journey along the Red or Assiniboine Rivers in Manitoba, especially in the spring and summer. In spring they overflow their banks seeking to breach every dam and flood every unprotected low-lying land with free flowing and often-undefined waters that carry danger as well as richness. Once the flood subsides and summer arrives there is no need to spend the rest of the journey treading water just to keep our noses clear. The rivers are now within their channels and meander with a lazy habit and we have time to contemplate the rush of earlier times. I have found that one of the most important questions we have to ponder is whether the river has determined our destination or have we navigated the river?

As regular readers know, neither my process nor thinking is linear. In keeping with that approach, I often do not have a self-evident point of beginning but begin we must, so read on to Part I.

DIRECTIONS Part I: Stay werr you’re to, ‘til I comes werr you’re at, B’y!

“Stay werr you’re to, ’til I comes werr you’re at, B’y” is a saying that has almost become synonymous with Newfoundland and Labrador. [See Note 1) When you look at the words sitting rather alone and limply on the page, it doesn’t seem all that funny or profound. Still, when you catch it mid-monologue, swimming in a stream of consciousness and slang tripping off the tongue of a fast talking (not slick, just talking fast) descendent of the original Indigenous people and the Irish, French, Scots and English who came to the shores of “The Rock” in the early 16th century, the oratory is theatre, comedy, music and gospel with a smear of blasphemy and a nod to graffiti.

Near Cape St. Mary's

Near Cape St. Mary’s, Newfoundland and Labrador Photo: S. Marshall 2015

At my former workplace we employed highly trained and very skilled professional interpreters (English to/from French interpretation primarily) for our National Executive Board meetings. Occasionally the interpreters would apologize that they could not provide proper interpretation into French when Brother O’Leary from Newfoundland and Labrador was in a jocular mood and in full swing in English with his Newfoundland accent and slang. It had less to do with “salty” language than it had to do with Brother O’Leary’s version of the “English” language. Neither the interpreters nor the rest of us English-speakers could understand a word he was saying. We often joked that we needed a third interpreter for the English spoken in Canada’s youngest province. [See Note 2]

Now, the language and the accent on “The Rock” is such that some people recommend that you travel with an interpreter if you are a “Come from away” i.e., someone who is not local and therefore without a family heritage in Newfoundland and Labrador. However, my lover and I found the locals to be quite tolerant and accommodating and would switch to an understandable form of central Canadian English, especially if a commercial transaction was imminent.

Near Cape St. Mary's NL

Do sheep and sheep dogs understand the language of Newfoundland? Maybe they are smarter than I am …. Photo: S. Marshall

Maybe it is my inquisitive nature but I find that the instruction, “Stay werr you’re to ’til I comes where you’re at, B’y” is one that begs the question…. well, what was the original question that spawned this response? The question undoubtedly was, “Where am I and how do I friggin’ get out of here?” The Newfoundlander is kindly offering assistance by coming to get you. I hope so because if you have ever tried to follow directions given by a Newfoundlander, you might inadvertently go “out on da neck” instead of “down da arm” or “up da shore”… or is it up da arm and down da bay? …. Oh, never mind. [See Note 3]

Of course there may be extenuating circumstances. For example if you are “some stunned” or are recovering from a “Screech In,” you might be a little foggy on how you got to be where “you’re to” or exactly where “you’re at.”  I don’t consider myself to be particularly dense and I have always gotten along well with the sisters and brothers from Newfoundland and Labrador but the night that I was “Screeched In” is indeed a little foggy in places and I am at the mercy of anyone who has a better recollection of what transpired that night than I do.

Is the “Screech In” a rite de passage?

An argument can be made that from a cultural anthropological perspective the “Screech In” is the celebration of a “rite de passage” which confers a new status on selected candidates. How and why the candidate has been selected is of no great relevance except that the selection is not random i.e., each and every citizen does not have an equal probability of being selected. This means of course that if selection is not random then it must be determined in some manner. For example, in many societies age is a determining factor and these ceremonies mark important moments as a child becomes an adult and accepts responsibilities as an adult. In this case, it appears that the candidate must have already achieved the age of majority (19 years old) in Newfoundland and Labrador in order to fulfill the requirements of the ceremony. Another determining factor is that the candidate must be a “Come from away (CFA),” i.e., a resident of someplace, any place, other than Newfoundland and Labrador, and you must have wandered by design or by accident into the territory of the Newfoundlander, and been selected (or even self-selected) to be a participant in a Screech In.

The significance of the CFA designation cannot be overstated. Newfoundland and Labrador is similar to many other unique social groupings – it is very difficult to penetrate from the outside. Once a CFA, always a CFA or so the saying goes. Even if you lived on “the Rock” for 40 years, it is likely that you will be identified as a CFA. With any luck, your children will not carry the designation but they might. I am reminded of a woman who lived in Altamont, Manitoba for over 50 years. She initially moved to this small village as a schoolteacher and when she married a local farm boy, she stayed. Together she and her husband built a successful business and raised a family. In spite of the lengthy time spent living in and participating in community activities, she could never quite escape that somewhat derisive moniker, “city girl.” If her ways didn’t quite mesh with the locals or if she didn’t know how to do something, it could be explained by saying, “Oh, she’s a city girl, ya’ know.”

The “Screech In” carries the promise of a change in status from a pure “Come from away” to “Honourary Newfoundlander.” Cultural anthropologists tell us that there is a period of ambiguity or disorientation called “liminality” when the subject has moved on from her/his old status and has not yet accepted her/his new status i.e., s/he is on the “threshold.” Everyone who has been “Screeched In” reports that they experience this period of fogginess and disorientation as they shed the pure “Come from away” status and accept their new status as an “Honourary Newfoundlander” or a “Screeched In Newfoundlander.”

All that for an asterisk?

The problem is that the whole “Screech In” thing is bit of a fraud if you stack it up against the measure of a bona fide rite de passage. It seems that in the mid-1970s a St. John’s nightclub owner named Bill Walsh and a few of his cronies cooked up a fake tradition and called it “The Screech Club” to attract out of province business. It was pure genius because what better way to attract tourists than to give these “Come from Away” a chance to become something they desperately wanted to be but could never become – a member of a unique, quaint, welcoming society where its citizens carry a sense of humour 24/7 for 365 days a year.

“Lard-Tunderin’ Jeezus B’y!” The clubs on George Street in St. John’s are usually packed with tourists all too willing to be screeched in – all too willing to be called to the altar of cod in a rite de passage which confers honourary status but no actual rights. Funny thing that; the ceremony provides the candidate with a sense of inclusion in a culture that specifically excludes her/him. The “Screech In” rite de passage admits you into the “Royal Order of Screechers,” a club to which native Newfoundlanders would never belong … and can never belong. The “Screech In” leaves you almost exactly where you started – as a CFA with an asterisk for the official statistics (CFA*) – a “Come from away, Screeched In.”

Armed with your certificate attesting to your status as a “fake” Newfoundlander, you are now welcomed with generous and open arms in all ports and as an added bonus you can watch with a new appreciation the many fine comedians from “The Rock” who have dominated Canada’s comedy venues and television shows for decades. Andy Jones, Rick Mercer, Greg Malone, Cathy Jones, Mary Walsh, Tommy Sexton, Shaun Majumder, Mark Critch, Bob Joy, John Sheehan, Jonny Harris, Diane Olsen and many others have established Newfoundland – style comedy and political satire not just as entertainment for the masses but as mandatory education for the elite.

My God, there is no cod

I personally was “Screeched In” at an odd ceremony 20 years ago in Marystown in the Burin Peninsula late on the night of the “scoff n scuff” (dinner and dance) of the annual convention of our Newfoundland and Labrador Division. An “appointed” representative (a native Newfoundlander) of all that is good and wholesome in NL ushered us into the dance hall, accompanied by suitable music (“I’s da b’y wha builds da boat…”) and a huge outburst of hands clapping, boots stomping, and voices hollering and hooting. Those of us who were “Come from Away” were directed to form a circle holding hands as we did so. The Officiant, wearing the traditional yellow sou’wester and slicker, solemnly called the congregation to order and began the liturgy of the “Screech In.” I don’t recall everything about the service but some elements still wash through my memory banks at high tide.

Officiant (addressing all who are “Come from Away”): “Do ya want to become Newfoundlanders?”

“Come from Away” (collective response): “Yes B’y!”

At this point each “Come from Away” is called forward individually and his/her name clearly stated for the record. The Officiant proceeds to tell the assembled crowd a few amusing “lies” or stories that must have been true because no one could ever make up such ridiculousness, about that particular person (clearly, the Officiant had been briefed in advance.) At the time I was an Executive Assistant to our National Secretary Treasurer so there was much joking about how important it is to “follow the money” [little did they know how close this jesting was to the truth about some practices within the National Secretary Treasurer’s Office – more on this at another time perhaps.] Also, a few shots were taken at my “landlubber” and “mainlander” origins in Manitoba and the Canadian prairies.

Officiant (addressing each “Come from Away” by name): “Are ya a screecher?”

Come from Away: “ ‘Deed I is, me ol’ cock! And long may yer big jib draw!” [Translation: “Yes I am, my old friend, and may your sails always catch wind.”]

Newfoundland Screech

The bottle was full like this one when I started…. Photo: S. Marshall 2017

At this point the liturgy directs that the Come from Away must to kiss a cod. Sometimes the cod are not in plentiful supply so there are a few acceptable substitutions e.g.,“Newfy steak” (baloney,) the rear end of a rubber puffin, or any other ugly non-cod fish that can be found. In this particular case, a helpful Newfoundlander with a warped sense of humour had located a package of frozen capelin (a small fish that spawns on the shores of Newfoundland.)

Officiant (getting into the spirit of things): “I decree the capelin to be sacred for the purpose of this Screech In.”

Officiant (after a brief pause to consult with a group of locals acting as advisors): ”The absence of a proper “Host” (the Cod) and the sanctification of the capelin can only be granted if the “Come from Away” not only kisses the capelin but also bites its head off.”

There was uproarious laughter and hooting from the assembled throng. I suspect that alcohol was a major factor in this decision but as the Officiant decreed it, it must be done, and it was done.

One of the Officiant’s more thoughtful advisors provided a tin bucket into which the “Come from Away” could spit the head of the capelin if s/he chose not to swallow it. The bucket also proved to be a suitable vessel for depositing anything else that came up to accompany the head of the capelin.

To my knowledge not one “Come from Away” actually swallowed the capelin head but to our credit (I think) each of us did bite the head off. It should be noted that each “Come from Away” was given a shot of Screech, which s/he was required to down before kissing and then biting the head off the capelin. The Officiant’s advisors, being naturally helpful, were ready with a second shot of Screech so that the taste of the capelin could be washed from our sophisticated “Come from Away” palates immediately after spitting the capelin head into the bucket – and after we finished gagging of course. The bucket again proved to be handy for a few of the “Come from Away” group immediately after the second shot of screech hit her/his gullet.

Certificate of Screech In Stan Marshall 1997

Kept my certificate just in case ….

Officiant: “You have honoured the body and blood of our ancesters and the great God of the Cod so by the grace of the ghost of Joey Smallwood [the last founding Father of Confederation as he was premier of NL when they joined Canada in 1949] and the authority vested in me by the Province of Newfoundland and Labrador, you are hereby enrolled in the Fraternity [and Sorority] of Screeched In Newfoundlanders.”

Once you have received your certificate it is advised that you carry it with you whenever you return to Newfoundland and Labrador as proof of your “Screeched In” status. Failure to have your certificate on your person is equivalent to revoking your status and it is mandatory that you experience the “Screech In” ceremony once again to bring your status up to date.

If you are an astute critical thinker, and not too foggy, groggy or stunned, you will know that come the morning there are questions that will need to be answered – no, not the questions that I usually ask in sequence after a night of celebrating e.g., “Where are my glasses? Where is my wallet? Is there any money in my wallet? Where are the painkillers?  But first things first, before you go to sleep or fall down where you are, your most important task is to remember that there are important questions that need to asked. I enumerate only a few of them here to start the process because I find the more that I think about these questions, the more questions I have.

  • Does it really matter if a rite de passage originated as a crass marketing tactic to fill the pockets of nightclub owners and the distillers of Screech and other beverages?
  • Is it possible or even desirable to be a candidate in the same rite de passage more than once e.g., can you pass into adulthood twice?
  • Is it possible that the “Screeching In” ceremony is more for the amusement of the native Newfoundlanders than it is for the Come From Away (CFA)?
  • Does a steady stream of CFA celebrants kissing cod (or biting the heads off capelin), drinking screech, singing, dancing and otherwise being made to look the fool tickle the Newfoundlander’s funny bone (that place at the back of the elbow where the ulnar nerve rests against a prominence of the humerus.)
  • Can a “Come from away” ever learn the language of Newfoundland?

So many questions, so little time … for a chucklehead like me to learn a new language and hatch a plot to exact revenge by dressing up like a mummer at Christmas… wait I am getting carried away. One thing I know is certain; it is pointless to try to get the last word in with a Newfoundlander.

Still flappin’

The celebration of the “Screech In” for the newly minted Honourary Newfoundlanders in Marystown continued for at least another four hours. I recall the President of our NL Division (let’s call him Wayne because everyone else in NL does and they wouldn’t want us to stand on formality) dancing a little jig as he stepped to the Convention podium first thing the next morning, all bright eyed and bushy tailed with not a hair out of place while the rest of us were “all mops and brooms” and looking like we had been “hauled through a knot hole.”

Wayne addressed the assembled delegates at 9 a.m. sharp with an informal report on the dance the previous evening. He had supervised the entire event personally to ensure it was a huge success and to win a bet with the National President at the time (let’s call her “Judy” because everyone else does) that he could keep her dancing until the band “gave’er up” and that was at 4 a.m. Wayne relayed that he was glad he hadn’t taken his shoes off when he went to bed because when he woke up in the morning, he looked down and his feet were “still flappin’.” I dies at ‘im [translation: he is some funny guy.]

I didn’t know it at the time but Wayne’s professed experience of continuing the dance all night even after going to bed, was to be my future. I wake up often to find one or both of my feet “flappin’” as my medication has worn off.  These involuntary muscle movements are more than mere tremours which many of us identify as being Parkinson’s; they are strong, constant, persistent, repetitive and painful muscle contractions over which I have little or no control without pharmaceutical assistance. I sometimes use some meditative techniques but they are successful only to a limited degree in some speciifc instances.

Don’t get me wrong; Wayne’s little joke is still very funny in context but it is not quite as fun or funny if you consider what a Person with Parkinson’s (PwP) feels and faces upon waking with feet ‘flappin’.” Nothing is absolute, as they say, and thank goodness there is room for humour in many things that we may think to be sad, painful or grim. Sometimes flappin’ feet can be funny and fun and it makes us laugh when our two kittens think it is a game and pounce on my feet as I kick and wriggle under the covers.

As long as the arse isn’t outa ‘er

You know, the highly expressive language of the Newfoundlanders is exactly what I needed to help me identify, clarify and sum up my objective for this series of blogs. My goal is to begin to understand of how I got ‘here’ from ‘there.’ What happened along the way? Have I passed through the requisite rites de passages on my journey to my present status in society? How many of those events were real and how many were fake and does it matter if they were ‘meaningful?’ What kept me on course and what threw me off course?

Usually when a Newfoundlander says that the “arse is out of ‘er,” s/he is referring to the fact that the economy is in hard times and that things have gone wrong, very wrong and probably out of control. I hesitate to think of what that means when applied to the direction of a person’s life. I am counting on not hearing, “The arse is gone right clean outa ‘er,” when I continue my journey to explore the factors that hold my life together.

We’ll continue the quest in these and other questions in Directions Part II: No mea culpa here, coming soon to thepdgardener.wordpress.com.

NOTES

Note 1: On December 6, 2001 the Constitution of Canada was amended to change Newfoundland’s official name to Newfoundland and Labrador. In keeping with that change, I will use the full Newfoundland and Labrador assignation when referring to the political entity, the province. However, when I reference the cultural entity that is Newfoundland, I will use the short and original form, Newfoundland.

Note 2: It is nice to be referred to as young and I bask in this moment as Newfoundland came into Confederation as Newfoundland in 1949, the year in which I was born. It became Newfoundland and Labrador in 2001, see note 1 above. For those who are asking: Nunavut became Canada’s youngest Territory, not a province, when it separated from the Northwest Territories in 1999.

Note 3: Shaun Majumder is a comedian of note and a native Newfoundlander. He has a very funny bit on what happens when you ask for directions to a pharmacy in Newfoundland and Labrador. Be warned that this clip does contain mature language and explores some mature themes. It can be found at https://www.youtube.com/watch?v=vxR6YPW24X0

RESEARCH AND REFERENCES

Martin Connelly, ”Why I won’t be screeching” in The Morning News https://www.themorningnews.org/article/why-i-wont-be-screeching

Encounternewfoundland.com http://encounternewfoundland.com/newfinese-101-words-and-phrases-youre-likely-to-hear-on-the-rock/

en.wiktionary.org https://en.wiktionary.org/wiki/arse_is_gone_right_out_of_%27er

Explorenewfoundlandandlabrador.com http://www.explorenewfoundlandandlabrador.com/newfoundland-words-and-sayings.htm

Joebattsarm.ca http://www.joebattsarm.ca/Old_Sayings.html

Shaun Majumder, Newfie Directions, on YouTube.com https://www.youtube.com/watch?v=vxR6YPW24X0

newfoundlandlabrador.com http://www.newfoundlandlabrador.com/AboutThisPlace/PeopleCulture

© Stan Marshall (The PD Gardener) 2017

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LIST OF POSTS IN THIS SERIES 

DIRECTIONS:   Taking the Scenic Route to Parkinson’s and Beyond    

DIRECTIONS Part I: “Stay where you’re at ’til I comes where you’re to, b’y“    

COMING SOON!

DIRECTIONS Part II: Stories of Halloween, Outhouses, potatoes, pesticides, Parkinson’s and mea culpa