Losing bounce.

In high school I played volleyball. Our team was good, though I wasn’t any good at setting or spiking. (I spiked us out of bounds to end our BC Provincial Championship run during the semi-finals.)

Since Grade 6, OTOH, I'd been great at the Bump (my coach called it the "McGovern Flick"; a carefully controlled reception of the ball coming from any direction, sent to our setter for someone else to spike).

And I was particularly good at serving. Those tennis lessons in short white skirts and frilly white underwear had paid off in my overhead volleyball serve which almost always glanced over the net before curving unexpectedly, leaving the other team's defense scrambling, usually unsuccessfully, to return the ball. Games could march on, one trickster serve after another, until I hit the net.

After 10 or so years without, I took up playing "recreational" volleyball with some friends. They hadn't been volleyball players but were super competitive sports people (even at croquet!) so expectations were high. But I'd lost my serve. No matter how hard I tried: to concentrate, to not think, to rediscover the zone; I never did.

At the time, losing my volleyball serve seemed like such a big deal.

Saint Louis du Senegal is a small city but with a rich cultural heritage. Nov. 29th to Dec. 1st was no exception with the Festival Métissons - a hybridization of French and African, white and black, music. 

The opening night concert was by far the closest one gets to diversity in this society:

- a dapper older white man in burnt sienna linen jacket and avocado pants, photographing the scene while remaining a part of it;

- intervals of older Senegalese men owning the dance floor;

- loads of local Boytown hipsters (check-down pants off their butts) and even some girls (besides the usual white-man hunting lycra-dressed young ladies);

- three white girls with their hair in prim buns: American visiting University students, straight from the Bible Belt chattering in American with Peace Corp volunteers (with their enviable fluency in local languages);

- a clique of resident parents with their stunning mixed race kids;

- dreads and traditional tresses checkered on black and white heads;

- a couple of French Cougars, each with her mari d'hiver

- a middle aged Senegalese woman in traditional "wax" print cotton boubou smoking a cigarette (a true indicator of an exceptionally liberal vibe);

- a Belgian girl who seems gloriously happy every time I see her at a concert;

- a class of restless Choir boys on stage; Koranic school talibés at the curb, waiting...

The following night, the Senegalese group Takeifa (rising stars of African music scene, with their family harmonies, swingable, jumpable beats, and intelligent lyrics in Wolof, French and English) took the stage.

For the first time in 8 years here I can say that the sound system was not loud enough and had too much bass. Like Senegalese TV watching, people talked over the music. The place to be present was the dance floor.

It is well known that dance is central in African cultures: social, symbolic, ceremonial, mystic, healing, joyful. I'd always loved to dance. Years of ballet and contemporary dance lesson paid off, with or without the pink toutous.

In my Montreal party days I could dance for hours, euphoric; my own little planet in a constellation of beautiful, sexy energy. Our orbits were led by DJs like Andy Williams (not the old guy of my parents' days) 'til dawn.

That night only my imaginary dancer moved. It was all I could do to lift my wine glass without splashing. The joy of blending myself to kindred spirits lost.

And I'd thought losing volleyball was hard...

There are times when I am brave and make the best of much altered circumstances. But it is not easy and doesn't always work. Little by little this disease removes bits and pieces of my identity: some big, some small, some to be replaced by other, new pieces, others lost forever and ever.

As visions of volleyball and dance tumbled (nearly on tempo) around in my head, my husband turned to me and said: "For once you're not complaining". In his defence he was tired, not his usual supportive self, exaggerating with his "for once".

And we used to be able to read each other’s minds...

***

Then the last night, we went to 2 fantastic festival concerts (with Metzo Djatah and Wato). Neither was really dance music so at moments, without the nostalgic expectation to dance, I was able to release my grip, allowing my tremor to oscillate with the beat.

It wasn't so hard after all.

Adaptive Accessories, Coping Part II, The Jelly Bum.

I never did have great circulation; always the Princess feeling the Pea. With Parkinson’s it is worse. The chairs that don’t cut off blood to my left leg and foot make for a very short list. To compensate, I have The Jelly Bum: an orthopaedic gel seat.

I’m sitting on it now!

I use it at my Vancouver desk

 and at my desk in Saint Louis.

It goes everywhere with me thanks to a jazzy African print carry bag we had made for it in Saint Louis.

Abdoukhadre gets to make it work with his wardrobe if we’re together…

I take it on the bus in Vancouver

 Handling it on a crowded bus requires a technical routine of hold/movement patterns – like a baton twirler – never varying the holding position (tucked under my left arm so I can use my right for bus-entering business) nor the standard swing into place movement (so that it lands predictably right side up in the right direction in the right place for me to sit on it before the bus lurches forward).

and in the taxi in Saint Louis du Sénégal.

I take it to my doctors’ offices

(where if my hand is shaking too much, the doctor takes the photo…)

and to the chiro’s.

I take it on holiday: to Whistler

in the lobby of Nita Lake Lodge

and on the Whistler Gondola

where there’s nothing but a narrow ledge for sitting during the 25 minute ride so I brought my own chair too.

The Jelly Bum is essential to every phase of our trip Vancouver – Dakar: in the airports; on the wheel chairs; and in the bucket seats of Air France Premium Voyageur Class. To avoid the appearance of yet another carry-on bag, the jazzy African print carry bag is replaced with a simple, white, fitted shopping bag that leaves no doubt as to the orthopedic purpose of the object in question.

(Aéroport Paris CDG: our encampment between flights)

I take it out for dinner - to Baan Wasana Thai Restaurant in Vancouver

 and for drinks at the Harmattan Bar in Saint Louis.

I took it to see the demolition of our family’s home of 50+ years

and to our construction site in Saint Louis.

 It too was a victim of our Burglar who stripped the Jelly Bum down to reach into its fleshy innards looking for cash…

The Jelly Bum is so essential, so precious, so unavailable in Sénégal, that I sent a backup one with our furniture arriving by container ship any day now….

Fright: Fight, Flight or Freeze. (The Burglar Night)

Before.

I never thought I'd scream. Too West (WASP) Side Vancouver; family drives and Sunday dinners. I'd been taught which fork to use and when.

But then the first time I was really threatened (a would-be rapist at midnight in the Youth Hostel bathroom in Vézelay France) I did. Although I knew that in Europe the lights are often on timers, when that light went out, I was quite sure that bathroom lights were not. Trouble, I recognized. Only way to know what kind was to leave the stall and face it. My flaccid assailant grabbed me and shoved me up against the wall.

I screamed and screamed.

No one came. People thought it was just another kid yelling; one of a rambunctious group who wouldn't settle for the night.

He OTOH understood my screaming and rushed off unfulfilled.

Just months before Vézelay I’d cycled alone from Vancouver to Terrace in northern BC, camping my way up the Sunshine Coast, then Vancouver Island before taking the boat up the Inside Passage. Completely alone one night in a very isolated camp site my imagination ran wild. Each leaf falling was magnified into the footfalls of a homicidal maniac. Although I fled the next empty stretch by bus (there was nothing on that road but a logging camp, with loggers, male loggers…) I learned an important lesson in reigning in my imagination: best to approach fear with a clear rational head and to stop making up stories when it was nothing but a falling leaf.

When I was young I always wanted an opportunity to prove how brave I was. On BC Ferries sailings to Vancouver Island I imagined some little kid falling overboard and me jumping to the rescue before anyone else. For the record, it was at least 50 feet down to the water and it never happened.

During that horrible first year in Senegal we (my evil ex and I) had an even more evil landlord (he'd lost his whole family in a plane crash and had never been right in the head since). One month our rent was a week late. Late rent here is more the norm than an exception.

Heading out one 7am, the landlord blocked me at the front door and he began screaming at me. He screamed and screamed, getting closer to me as I got closer to the wall. Inches apart, I froze, my eyes downcast,


“After having survived threat by appearing as if dead in a frozen state, wild animals are documented as subsequently trembling, which even may extend to grand mal seizures. This trembling or shaking seems to accomplish the unfulfilled intention of fleeing, thus re-establishing the animal’s balance of functions.” -  The Body Bears the Burden: Trauma, Dissociation, and Disease by Robert C Scaer, MD:

Prey before my aggressor, I did not scream or run or fight.

Eventually a neighbour distracted him. Then I ran up to our apartment. A few days later (rent still late) I came home to find our sparsely furnished apartment filled completely up with random furniture belonging to our landlord. I moved out.

Some years later, in a decidedly better Senegalese life situation, a friend and I were drinking wine in Abdoukhadre's and my apartment when out in the hallway in front of our door a commotion arose. Our neighbour, a fit 30-something carpenter was standing over his 10 year old niece, his hand and leather belt, brass buckle, raised over her prone body. I stepped between them, in his face, my feet intertwined with hers. He lunged at me. Eyes in eyes, I stared him down. I brought Sali into our apartment until her uncle settled down. There was nothing else to do. No one to denounce him to. Fighting rage lingered within me.

Three days ago in Saint-Louis, Senegal, shortly after Abdoukhadre left for Dakar, I was asleep. And then, half awake, I perceived an unusual play of lights, but slept. Then I woke up completely to see a silhouetted man, flash light in hand, at our bedroom door.

I didn't scream: Voleur! Thief! - which is the most effective way to rustle up community support. (Theft is taken most seriously. An accused thief in a market can be mob-beaten, police standing by to prevent murder). I stated simply, unnecessarily,: Est-ce qu'il y a quelqu'un là? Obviously someone was there; I could see him. While I slept, he'd been in the apartment for minutes; panning through our belongings, looking, unsuccessfully, for money.

Panning not packing

Standing shaking wrapped in a towel and phoning Abdoukhadre's brother for help, I was very lucky; the burglar had walked out barefoot, taking only minimal loot, our front door open wide.

Before PD I thrived on challenge (to face it, to be brave); even conflict (I fought with certain teachers, seeking to outwit them, or to be the settler of conflict, the diplomat between adversaries). The adrenaline made me high. I felt strong and wise.

Now with PD, the fear from the Burglar night and all its physical manifestations still reverberates painfully throughout my left, symptomatic half.

Like a small furry wild animal, I'm still shaking it off.

Travel vs Apathy: Bucket seats and prawns

One common symptom of PD is apathy. It is now understood to be a symptom of PD rather than a psychological consequence of the disease. And more common with left side onset of PD motor dysfunction. It is different from depression, another common symptom.

"Apathy refers to a constellation of behavioural, emotional, and motivational features including a reduced interest and participation in normal purposeful behaviour, lack of initiative with problems in initiation or sustaining an activity to completion, lack of concern or indifference, and a flattening of affect." - Apathy in Parkinson’s Disease Journal of Neurology, Neurosurgery and Psychiatry - http://jnnp.bmj.com/content/73/6/636.long

”Apathy is a neurologically based decrease in motivated behavior. It is organic rather than situational in nature. The causes are complex and not well understood but suffice to say it appears to be part of the same change in dopamine activity that brings on PD.” - http://theparkinsonscoach.com/2012/01/24/parkinsons-apathy-dont-care-or-cant-care/

For me, one highly effective anti-dote to apathy is our semi-annual migration: Vancouver - Saint Louis, Senegal. The disruption of routine, the planning, the organizing, and the necessity of constant decision making preclude apathy.

True I could just give up and not do it. However, by nature I am more compulsive/determined than apathetic. And besides, having set things up this way financially, I don't really have a choice!

So off we go.

After the usual struggles;

- Abdoukhadre wrangling our excessive carry-on baggage through security while wearing a belt and shoes he has to remove,

-  me wrenching Taxi out of her cat cage at security (the security agent kindly offering me a seat while waiting for her cage to go through the x-ray. I told him Taxi is afraid of the security process. He said: "are you nervous?" I was in full body tremor. "No, she is. I have Parkinson’s."),

- surrendering control and responsibility for getting to the plane on time to the Air France agent pushing the wheel chair (his fat belly flapping between my shoulder blades),

- once in the plane, finding somewhere to do yoga stretches. (Inexplicably our regular fare tickets put us in Premium Voyageur Class where the scaled down Business Class bucket seats could not save my toes from cramping into the prawn pose),

and after recovering from the 24 hour marathon of symptom-inducing conditions, we arrived, in Saint Louis, safe and sound.

to Saint Louis du Sénégal

Time : to travel

I have so much I want to blog about but it’ll have to wait… we are preparing to leave Vancouver for Sénégal…

First – off to l’aéroport Paris Charles de Gaulle

To Saint Louis, to see family

To find cats at the beach

 And goats by the river

To resume our house building, starting with building a stair case so the architect, me, can go up stairs

With breaks for cocktails and night life

 And although there are moments when Saint Louis resembles Vancouver, it is not at all the same

FOUR: My Hysterical Arm (those other explanations)

From - Psychogenic Movement Disorders:
Neurology and Neuropsychiatry by Mark Hallett

My father died when I was 32. Losing him, my quiet champion, was terribly painful.

     Can’t yet find the words to speak the burial
     Though I didn’t die – gasping –
     for you and faith receding – 
     down these oft-dreamt stairs.
     The Dali Lama’s Mother
     Brittle    light    reverent     still
     upon my upturned palm

Five months earlier he had been diagnosed with a brain tumour. I flew back from Montreal to Vancouver and found him standing at his hospital bedside cradling his left arm with his strong right hand, his wedding ring on a chain around his neck for safe-keeping.

A year after seeing him this way I was toodling along rue Sherbrooke ouest near boulevard St-Laurent when for no apparent reason I fell of my bike and broke my left arm at the elbow. As removable slings rather than casts are used for these breaks, I often found myself cradling my left arm…

I couldn’t help but sense his presence in my fall.

An elbow’s ache unhinged –
Reaching out for your right hemisphere –
I fell…

And later, in Sénégal, I found all sorts of good and bad things. 

The manipulative and cruel man who one day knocked me down (amongst too many other oppressions) being of the latter. An X-ray of my left elbow indicated no broken bones.

Sticks and stones may break my bones but names will never hurt me?

I find that that rather depends on the context. Being called a bitch isn’t such a big deal unlike being called by a name other than your own for his purpose of perpetuating a fraud against a school girl with whom he is having an affair in order to benefit from the resources of her family…

I’d only ever had nice boyfriends – I broke up with him or he with me. No evil.

A terrible vulnerability (engendered by the betrayal of our collective cause at my most interesting job followed immediately by my bio-mother’s rejection) had left me prey: frozen and powerless.

Once again, cradling my left arm.

Then with the beginning of the symptoms that eventually led to my PD diagnosis, my left arm was not only cold (and wrapped in an arm-warmer), it was also weak…

And there I was, once again, cradling my left arm.

hys•ter•i•a (h-str-, -stîr-)

n.

1. A psychiatric disorder characterized by the presentation of a physical ailment without an organic cause.

2. Excessive or uncontrollable emotion, such as fear.

hys•teric (h-strk), hys•teri•cal (h-str-kl) adj.

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. 

 A Psychogenic disease is one that originates from the mind instead of another physical organ, i.e. the effect is psychological (non organic) rather than physiological (organic). It is brought on by emotional trauma. The body bears the burden…

The science of trauma is highly complex and as yet unmastered by specialists. I can therefore only speak from my limited and subjective understanding.

My left arm, which contracted “hysterically” and ultimately began to tremor, bears the burden of my traumas – losing my father, abuse where there should have been love and respect and, by association, the betrayals that left me vulnerable to that abuser – traumas embodied in the cradling of my left arm.

Before the PET scan I believed my disease was psychogenic because there were so many precipitating events and because of the symbolism of my cradled (hysterical) left arm.

Also, my symptoms weren’t initially so typical of PD. The tremor was not at rest but with effort, movement. In PD it’s usually the other way around – Michael J Fox wrote how when acting, if he felt a tremor coming on while he was not moving, he would incorporate it into some unscripted comedic gesture.


The onset was quite rapid – first symptoms to functional difficulty in a few months. Symptoms could be supressed, and still can be, by distraction. Unlike with PD, the frequency of my tremor varied in rhythmicity and in direction of oscillation.

However, patients normally resist the diagnosis of a psychiatric illness. Why would you prefer to have a psychiatric illness? Well in my case, because Psychogenic Parkinsonism is curable, Parkinson’s is not.

Maybe I was in denial. Maybe there is more to the story than depletion of dopamine-producing cells in my substantia nigra. Even if unanswerable, there is always a Why?

Heights: August 17th 2012 - our 2xLeo Birthday

PD generated gaffes aside, I experienced one of my most embarrassing moments in Grade 9 English. Our assignment was to write a short story around the theme of a surprising experience. I’m not sure that it wasn’t pure malice that led the teacher to pick mine to be read out loud by another student – my surprise situation was so lame. Especially so as it followed a brilliant story by another girl in which the listener gradually discovers that the adventuresome protagonist is a young child climbing up the slide for her first time and looking down to where she would so very soon be transported.

The thrill of Heights.

One of my pre-Parkinson’s physical triumphs was standing tip-toe on the very top of a 10 foot ladder in the near dark reaching to the very high gallery ceiling to change a light bulb. And not falling.

Another was cycling very fast down the hill of Avenue du Parc in Montréal. The key to the joy was crossing with the pedestrian light across from the Sir George Étienne Cartier angel statue in Parc Mont Royal (scene of summer Sunday Tam Tam beats).

The cross walk

Tam Tams

3 lanes of North bound traffic clogged the uphill side of the avenue as I had all 3 South bound lanes to myself. Provided I maintained speeds of 50km/h or more I could slice down the middle of those 3 lanes and veer off onto a side street and plunge, bike courier like, into downtown traffic so high on adrenaline no obstacle (car, pedestrian, curb) was insurmountable. I never hit anyone or anything and always remained polite (unlike certain bike couriers).

The thrill of Heights.

My days of taking those kinds of risks were most effectively ended by PD. But I miss the thrill.

So, to celebrate Abdoukhadre’s and my mutual birthday on August 17th, we went up a mountain.

As wild mountain bikers careened down narrow rock and root strewn trails and flipped off; freeride mountain bike tricking in Crankworx @ Whistler, we rode the gondola up.

Crankworx

 At 436 metres above the valley floor, looking down from the Peak2Peak Gondola, the thrill was tame but still beating.

On the train back to Vancouver, hanging out the open window of the train to photograph the rapids in the Cheakamus Canyon way below wasn’t dangerous enough (except for the risk of dropping my camera into the abyss) and yet the tweak of the thrill of heights was roused again. 

It’s been said that before the disease, sufferers of PD weren’t risk takers. 

And that PD meds can make them so. 

I just know that certain fear is really joy. Bring it on.

Adaptive Accessories, Coping Part I, The Arm Warmer

In its rigidity, my left forearm is always cold. Since well before my diagnosis of PD, I have found ways to keep it warm…

At first it was a wrapped scarf

Virage Beach, Dakar, Sénégal Circa 2007

Then I bought leg warmers 

My Bday BBQ, Vancouver August 17th 2009

Test drive, Vancouver Summer 2010

Which had surprisingly come back in fashion and where thus available at The Bay

More recently I have opted for a more discrete black cut-off sleeve or cropped fleece mitten from Mountain Equipment

November 7th 2011 (Tabaski -
Aïd al Kebir, the Feast of Sacrifice -
Saint-Louis du Sénégal)

Only returning to the original scarf style for special occasions – such as this veil-like Ralph Lauren for our Black and White Wedding.

Black and White Wedding, our backyard, Vancouver

With Abdoukhadre, May 23 2010

THREE: High school and Hormones and starting all over again, again.

Sports Day, with my younger sister Jane

I was lucky in my childhood: loving adoptive parents, freedom kids don’t have today, creative and athletic activities galore and summers on Gambier and Vancouver islands. Camping; canoeing; hiding-seeking in urban corn fields; meteorite watching from our sleeping bags on the boathouse roof; fleeing bats down narrow night roads channelled by 150 foot trees; making our own radio shows; and calling our mothers the Beasties. It was a time, like for lots of lucky kids, of joy and self-discovery. It became me.

Then came high school and hormones and that self got lost, led astray by the bodily changes of puberty (not to mention the Peer Pressure).

My 20s and 30s were spent rediscovering and recreating the fertile terrain for the creation of an adult version of that kid self. Philosophy studies at UBC; bike trips (Vancouver to Montréal, solo up to northern BC, Europe, Israel, Turkey, Japan).

South of France 1986

In Istanbul, with a McDonald’s garbage 
bag full of Turkish carpets 1987

After 4 months working on Kibbutz Kinneret and a Negev Desert cycle with a rescued dog on the back of my dear friend Nikki’s bike, working as a Chambermaid in an Israeli hotel, where the work sucked but was made up for by the experience of living with a small group of African clandestine workers who’d had the good fortune to migrate 25 years ago before the desert and ocean crossings became today’s futile, often deadly desperation.

In the Negev Desert Israel with 
Nikki and Mags the dog 1987

Then going to art school (Concordia, Montréal) and becoming an artist (photography, found object and poetry installations).

Diana’s Quiver (1993)

Escarpolette and

Sword and Shield (part of FOLD) 1995

Hill Mantra – rue de la montagne (1993)

To Fall (1994)

Baptême (a book work, Galérie La Centrale, 1996)

And working in the Montréal art scene, most interestingly at Studio XX where in 1997 I created the international web art festival Maid in Cyberspace (now updated to Festival HTMlles).

An invitation from ISEA to be a monitor in West Africa’s 1st web art project in Dakar led me to Sénégal and all sorts of good and bad things: my husband and my cat being of the former. So too my art exhibition Toubaab! at the Canadian Embassy.  Toubaab! explored my integration as a visible minority immigrant into Senegalese life.

Toubaab! (2005) Entrance Hall, Canadian Embassy Dakar

My senegalo-canadian  flag

1 in a series of photos in Toubaab! (photos: Djibril Sy) 

One of the poems and proverb signs in the exhibition

The exhibition was preceded by freelance web design in Dakar and followed by a wonderfully challenging and rewarding job as a professor of web design and Department Head at a computer college in Dakar.

There was phosphorescence in my childhood and I had found it again.

And then my arm started to twitch. After sustaining 12 hour days of computer work suddenly I could barely type. Three years later I was diagnosed with Parkinson’s Disease.

As the shock, anger, denial, anger fade, the bodily changes of PD mean starting all over again, again. 

A new me. 

Which equals the old me minus just about everything I ever loved to do.