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…
