Public Perception of Parkinson’s Disease in the streets of Saint Louis du Sénégal (Part I)

As we were strolling down a quiet Quai Giraud around 11pm last night (near where the grilled meat man sells his evening brochettes – his mother-goat with her red collar and fawn colour fur, free by day to forage the nearby streets; in the late evenings spooning with her master the grilled meat man for warmth in the riverside chill), Abdoukhadre was addressed by a young woman standing in front of her family home, her chin flicking inquisitively in my direction: “Daffa ragal dox?”  Is she afraid to walk?

Multi-tasking

Multi-tasking Part I

Mask  - October 31 2013 (behind on posting…)

It has been Scientifically Proven that Women Multi-task Better than Men

This morning I let my gender down:

After 3 painful hours of non-stop packing/cleaning, I was unable to simultaneously slow melt a palate sized slab of chocolate (85% Cacao) and swallow pain killers

During my search for a method, my Parkinsonian hand tremored the water from the cup up into my nose and onto my glasses; morsels of chocolate and of Ibuprofen scattered or swallowed indiscriminately

Possibly the inspiration for a Halloween costume mask?

Multi-tasking Part II November 17, 2013

On October 31st 2013 I lamented on facebook my failure to uphold the Scientifically Proven 

Fact of Women’s Superiority over Men in Multi-tasking (due to my oral mismanagement of 

chocolate and Ibuprofen…). 

Yesterday Abdoukhadre, my husband, re-established that Fact. 

It began with a ceremonial frozen shrimp ring crown blessing dance (Fig. 1). 

(Fig. 1: Note shrimp ring on his head)

Then at the same time as he was defrosting said shrimp in the microwave, Kha decided to run next door for the Garlic Alfredo Sauce: late to migrate, our apartment already rented, we were juggling last minute renos chez nous, packing chez nos amis and sleeping where there was a free bed. (Fig. 2).

(Fig. 2 Princess and the Pea bed:

our tenant added his own Queen size even though the apt is rented as furnished…). 

While next door Kha decided to carry back a few other items including Greek Salad Dressing with Garlic and the scale for weighing our suitcases and something else I have since forgotten in the ensuing hilarity. Thus while defrosting the blessed shrimp and carrying multiple sources of garlic and other stuff, he decided to open our front door (Fig. 3)

( Fig. 3 Garlic at our front door)

So in the spirit of song quoting fb status updates (such as my high school friend Joanne Macnair’s uplifting nostalgic hits from “our days” or my wayward nephew Jason Juke McGovern's dark lyrics that provoke concerned comments from his fb friends who should know that lack of multiple meaningless typos indicate that said indicators of depression et al where NOT written by Jason… ):

“I am Woman Hear Me Roar!”

Readying to go again: Intersecting

Conversing compassion across the dopamine spectrum

we neared my Mother’s Ideal Life of Gin and Chocolate Without Dependants

(but for the missing white shag and leather)

Across decades -  from dress-up “Indians” in burlap and feather headdresses

leaping West side property hedges and barebacking Totem Park

to this.

I want to ask: how come?

“I could have danced all night! And still have begged for more…”

Well it was more like 10 or 15 minutes. No Fair Lady, I danced.

A happy coincidence of parkinsonian alchemy led me to discover that an hour or so after a dose of Prolopa, the mixture of sufficient nourishment, a glass or two of red wine, and the right music resulted in a window of functionality I hadn’t experienced for too long. The On-Off Phenomenon of Parkinson’s.

Like a lot of magic (think Cinderella) it didn’t last long before I turned back into a pumpkin. Or in this case into a turtle, if turtles had long hind legs on which to dance, back to a twitchy sitting voyeur.

  

And maybe it will be like the fleeting Ecstasy of a drug user’s first time that leaves them searching for that high that will never be the same again.

But for now, when I feel it, I dance, day or night for as long as it lasts. IIWII. It’s no use begging for more.

Feb. 2013 Hotel La Résidence, Saint Louis Sénégal.

Suicide: Day 4 April 18 2013

Years ago in art school I hammered straight sewing pins about the neck of a test tube to fix it to the wall for my mindmeld friend J.’s exhibition in the Concordia Univ VA Gallery. 

Parkinson’s Disease has taken the pins from my fingers and the hammer from my hand. It has compressed the tensile muscles, fusing the armature of bones and slowing the drumming blood, hollowing my body: a test tube of parasympathetic nerves and febrile Chi, nanosensitive to emotions within and without me.

I have wondered these few days, why I felt so much this tragedy. Others were closer, more frequent companions… ever since I met Christophe, I perceived a sensitivity to which I could relate, a vulnerability (in my case born of Parkinson’s) that he (it seemed to me) saw. We never spoke of this. When one has a physically apparent, degenerative disease, even the thickest skinned are subject to others’ reactions. Some people manage to communicate their compassion and give assistance with such subtlety that it flows over the pain and frustration without hurting. He did this.

April 15^th in Saint Louis du Sénégal, as the paramedics (les Sapeurs-Pompiers) ran up our apartment building stairs and his friends forced the door, I was brushing my teeth and thinking how I’ve kept meaning to share this blog with him, one of so few here who speak English well enough to wade through…

His suicide has rendered me the test tube.

Suicide: Day 3 April 17 2013

The first 2 mornings after, as I stepped out to warm up in the sun at the front door, I reflexively expected Christophe (our friend) whom I often met as he stepped out to do the same thing.

Two frileux (chilled white people in cardigans and linen scarves) seeking the African sun.

Instead I met his closed door, the plaster felled by his would-be rescuers, the psychosomatic smell of his unwashed blood in my Parkinson’s-diminished nose.

Suicide: Day 2 April 16 2013

3 thoughts for the day after suicide:

1. Watching too much violent American TV does not necessarily desensitize you to the sight of your friend’s blood on the floor

2. Knowing why does not always make it better: the rumoured explanation is just too tragically dumb.

3. Senegalese police should bring their own evidence bags rather than asking us for spare plastic bags! Blades, suicide note and laptop were removed from the scene in a white plastic Duty free bag from Paris CDG and an “aubergine” purple bag from Gala Fabrics, South Granville, Vancouver

April 15 2013

Our friend killed himself this morning.

Ambulance in the street

No hospital corners on his stretcher head first down the precarious steep stairs

Just the rumpled blanket from a sleepless bed.

I couldn’t see his face – covered? uncovered?

So I didn’t know

Then confirmation came and the Commisaire de la Police

So Paix Sur Lui, our friend, and his sad heart

un Work able

Dedicated to the honest case manager at Great West Life who recognized my inability to work as being true AND as not of my choosing.

When I was in my 20s my mother would lift her two hands to eyelevel, point her index fingers, and draw a rectangular box in the air. Aiming at my forehead, she’d lament: “if only you were a ____” (fill in the blank with Lawyer Doctor Architect Teacher, Wife of Lawyer Doctor Architect Teacher): A label with a Capital letter.

No wonder I am claustrophobic, if in a rather atypical manner… boxed in on a conceptual level.

My mother was a Call Centre Supervisor. Her father was an exiled* Irish Catholic intellectual educated at Trinity College Dublin teaching one-room school in the Saskatchewan Depression. Although he was paid in carrots and potatoes (he worked and was therefore not on the dole) and as a result my mother couldn’t go to the sponsored summer camp with the Relief kids, the bottom line is that he worked.

*He was not a convict shipped to the colonies but just a Catholic in a hungry country below the glass ceiling of religious affiliation.

She believed in Work.

So did my father. He was a pharmacist, though with the bedside manner of a country doctor. He once helped a little old rich lady (she’d arrive at the pharmacy in her chauffeured limousine) replace the battery in her lighted tweezers. At his funeral the church was jammed with people of his various communities. He was never wealthy but worked hard, with a compassionate engagement to those around him.

When I was 14 years old I worked Saturday mornings in the same pharmacy as he did. Not because the family needed the money but rather because work is part of life. I worked through high school and university. My most unlikely jobs:  as an undocumented-worker/chambermaid in an Israeli hotel (with a gang of similarly clandestine Africans) and as a home-baker of cakes for Café X in the Visual Arts building at Concordia Univ. (I delivered them on the back of my bike or by Metro in a clean cardboard pet carrying case… people smiled at the box with its kitten and puppy drawings on the sides until the smell of cakes threw them off). My favourite jobs: Programming Coordinator at Studioxx.org Montreal (a dynamic, creative environment; a grownup version of my childhood) and Dept. Head and Professor of Web Design at Africatic Dakar (I adored teaching, though the Director was obsessed with Napoleon – never again will I trust anyone obsessed with Napoleon; in particular short men from small island nations with colonial ties to France who are obsessed with Napoleon …)

My favourite TV shows are about workaholics: people for whom work is all; committed not to say obsessed, loyal, courageous: Homeland; Saving Grace – though not the ending; Grey’s Anatomy – someone has to have fun and sex in on-call rooms while being brilliant and working 80 hour weeks; even Prime Time formulaic Flashpoint – for the humanity behind their life and death discipline; Treme - where music is work is life is music.

Born on the cusp of the end of the Baby Boom and the beginning of Gen X, I have the work ethic of the Boomers but the interests of the gen-x-ers.

I only grew into the label of “Artist” in my 30s by which point my mother had had to get over my rejection of a marriage proposal from a soon-to-be Lawyer! She never did quite find a place in her label box for artist.

In 2006 I was working in tech support for Sage software. I liked it well enough (though it wasn’t really “me”) as after years of freelancing in a third world country, Sénégal, being paid regularly was hugely rewarding! As my symptoms developed I thought it was carpal tunnel syndrome… 6 weeks off then back to work. But things got worse, especially after a car accident in early 2007. Two years before my PD diagnosis I had to stop working. I continued to believe that the next specialist would figure it out and cure it and I’d be back working.

As a toast at Abdoukhadre’s and my wedding in May 2010 KJ, my lifelong friend (in our first photo we were funny looking babies plunked on our mothers’ Jackie Kennedy-esque laps) recalled how whenever I wanted something, I worked for it. This was 3 years after I’d had to stop working.

I even had to “work” for a diagnosis: researching specialists and asking my GP to refer me to them until my perseverance finally led me to the Pacific Parkinson’s Research Centre. I can’t disregard the work involved in convincing my insurance company that my Functional Capacity was insufficient for full time work. They know who they are: she who suggested I could be a Greeter at Walmart; she who said a change of attitude would cure me!

It is supposed to be a male thing – defining oneself by what one does for work. Job Title =Self. Nonetheless, my identity has always been described, circumscribed, encompassed by what I do: for work or as primary activity; including gainful employment, artistic production, travelling, even chambermaiding and cake baking, etc. Daughter, wife, non-mother, sister, friend: labels at best of only secondary descriptive importance.

Being unable to work at any of my previous occupations (in the sense of doing something that occupies, meaningfully, one’s time) or at any job considered “Gainful Employment” by my insurance company, I am afloat. I admire enormously people with PD who work. Admire? Envy. Perhaps their meds are more effective? Even my mother recognized I was a “Trouper” (high praise in her world). So it can’t be lack of will or courage or stamina. I just can’t.

So now, unable to work, it’s me who is seeking a label for myself…