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, six years ago, of Parkinson's disease, a degenerative brain disorder that leads to muscle rigidity, tremors and slowing of movement. Many people with advanced disease have impaired balance, shuffling gait and muffled speech. 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," the neurologist casually announced, 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 information in the hope that knowledge would empower me. Instead, it filled my mind with images of a future truncated by rapidly spiralling physical and mental deterioration. 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. At 63, my movements have become slow and deliberate and my fingers clumsy. My handwriting is illegible, even to me, and I scratch my head in bewilderment as I try to decipher what I've written.
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Taking charge of my couch-potato self, I hired a personal trainer. I lost weight and felt energized, and enthusiastically began to scour travel magazines for adventure-style vacations. But my formidable opponent sneaked in and within a short time tempered my newly acquired agility. I didn't feel confident that I could manage the physical challenges of such a trip.
So I joined a dance class devoted specifically to people with Parkinson's disease. For one hour each week my inhibitions take flight as I move with rapture and abandon, momentarily forgetting what brings me there. Until I look around at some of my fellow participants and catch a glimpse of my future.
I allow my imagination to run free as I weave stories about the people behind the expressionless masks and unblinking eyes that identify the individuals with more advanced Parkinson's. This one might have been a university professor, that one an aeronautical engineer, another a classical guitarist. The expression of dazed simplicity conceals their emotional and intellectual depth.
And the Parkinson's shuffle is still the most popular dance step among this crowd.
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Hoping to delay the inevitable for as long as possible, I ingest an impressive array of medications. I remember how I used to watch little old ladies fishing for their pillboxes in their crammed purses. I am now one of them - except I am neither little (unfortunately) nor old (though I hope to get there).
My greatest fear is the possibility of losing my intellect - but would I know? Even now, simple words elude me, so I describe what I am trying to say when I can't find the word. A cardinal becomes a "red bird" and a weeping willow "the tree that cries."
It helps to be able to laugh at myself. How else can I deal with being called "Sir" on the telephone because my voice has become deeper and softer - or being relegated to the male section of the choir? I use voice-activated software to type because my fingers move stiffly over the keyboard. The software insists my name is "Patel" not "Adele." My body moves slowly, like a movie stuck in slow motion, and sometimes I want to yell, "Hello! I'm still in here!"
I may be joyful, but I am also human. Feelings and fears 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 know the person I was. The anger I try to suppress each time my body betrays me. The shame I experience when passersby assume I'm stealing a handicapped parking spot. The embarrassment of holding up the line at the grocery store as I fumble in my wallet. And the terror of developing dementia.
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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 grandchildren guarantees unadulterated joy.
Until recently, I had shared very little of my inner world with my five 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 and uncomplaining.
But then I realized how this was preventing us from achieving the intimacy that emanates from openness and authenticity. And, to be fair, 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.
Adele Gould lives in Richmond Hill, Ont.
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