Stuck in Slow Motion

This is a story written 7 years ater i was diagnosed

with Parkinson’s, and the attempts I made to learn

about the disease and to cope with the changes I was.experiencing

This essay was published in the Globe &  Mail  in 2010 -

     I watch my children watching me as I tread cautiously down the stairs, holding tightly onto the banister. They walk in front of me in case I should fall, concern evident in their furtive backward glances. Slight unsteadiness has   gradually crept into my new reality, and I no longer remember how it felt to   scurry down the stairs.

     My future was carved out by the arrival of Parkinson’s disease, a degenerative brain disorder which leads to muscle rigidity, tremor and slowing of movement. Many people with advanced disease have  impaired balance, a stiff facial expression, shuffling gait, muffled speech, and small, cramped handwriting. Some experience memory loss, others struggle with disease-induced depression.

     My memories of D-Day (“Diagnosis Day”) remain vivid. “You have  garden-variety Parkinson’s Disease,” announced the neurologist casually,  leaving me fighting back tears as I tried to maintain a dignified front. “Garden  variety Parkinson’s disease?” I repeated to myself then, and for months after, as I tried in vain to deny my new reality. I devoured copious bits of information in the hope that knowledge would empower me. Instead, it filled my mind with  images of a future truncated by rapidly spiraling physical and mental deterioration. I was only 56 years old and I was utterly devastated.

     As the initial shock began to wear off I resolved to fight this strong   adversary with every fibre of my being, and to uphold my joyful disposition,  despite the challenges ahead.

     Taking charge of my couch potato self I hire a personal trainer.   Wonderful! I lose weight and feel energized, such that I enthusiastically begin to scour travel magazines for adventure-style vacations. But my formidable   opponent sneaks in and tempers my newly acquired agility.  

     My greatest fear is the possibility of losing my intellect - for me this would be the ultimate insult (but would I know?). Even now, simple words elude me, so I try to describe what I am trying to say when I can’t find the word. It’s there … on the tip of my tongue, but it doesn’t come to me until (if I’m lucky) someone else figures it out. So a cardinal becomes a ‘red bird’ and a weeping willow  ‘the tree that cries’.

     Hoping to delay the inevitable for as long as possible, I ingest an  impressive array of medications. Despite this my movements are now slow and deliberate, like a movie stuck in slow motion … sometimes I want to yell out  “Hellooo! I‘m still in here!”

    The rigidity in my fingers causes a myriad of challenges. My handwriting is now illegible, even for me, and I scratch my head in bewilderment as I try to decipher what I’ve written.

     Typing is an exercise in frustration, so I now use voice-activated software to type – which is both a blessing and a curse because it makes mistakes. I try to proof read correspondence before sending it but frequently miss errors and have sent many a letter with embarrassing mistakes. And the software absolutely insists that my name is  ‘Patel’ not ‘Adele!’

     I remember how I used to watch little old ladies painstakingly fishing for their pillboxes in their crammed purses. I am now one of them - except that I am neither little (unfortunately!); nor am I old (though I hope to get there!).

     As the disease marches on, striving to gain victory over my body and mind, I have learned to see humour in unlikely places How else can I deal with regularly being called “Sir” on the telephone because my voice has become deeper  … or being relegated to the male section of the choir?

     I may be joyful, but I am also human. There are feelings and fears that drift in and out of my psyche ... the trepidation that permeates my being when I picture myself with advanced disease … the sadness that pervades when I    remind myself that my beloved grandchildren will never remember the person I was … the anger I try to suppress each time my body betrays me … the shame I experience when passers-by assume that I’m stealing a handicapped parking spot … the embarrassment of holding up the line in the grocery store as I fumble in my wallet … and the terror I have of developing dementia.

When frustration builds and I need a good cry, I have a loving husband and good friends whose open arms soothe my soul. And always, a visit with my wonderful grandchildren guarantees unadulterated joy.

Until recently I had shared very little of my inner world with my children, despite the close relationships we enjoy. In part, I did not want to burden them, but a less altruistic reason was that I wanted to be viewed as strong … brave … uncomplaining. But then I realized how this was preventing us from achieving the intimacy that emanates from openness and authenticity. And  - to be honest - there was a part of me that wanted my children to know and  understand my experience.

And so we laugh together and cry together … and I quietly thank my lucky stars for the many wonderful people in my life who walk this road with me and give me every reason to be joyful.