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, over ten years ago, 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 utterly devastated.
As the initial shock began to wear off I resolved to fight this strong adversary with every fiber of my being, and to uphold my joyful disposition, despite the challenges ahead.
Taking charge of my couch potato self I hired a personal trainer. Wonderful! I lost weight and felt energized, such that I enthusiastically began to scour travel magazines for adventure-style vacations. But my formidable opponent sneaked in and tempered my newly acquired agility.
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 individual 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 as the mask freezes their once-automatic facial expressiveness.
And the Parkinson’s Shuffle is still the most popular dance step amongst this crowd.
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 that I am neither little (unfortunately!); nor am I old (though I hope to get there!).
My movements have become slow and deliberate and my fingers clumsy. My handwriting is now illegible, even to me, and I scratch my head in bewilderment as I try to decipher what I’ve written.
But as the disease marches on, striving to gain victory over my body and mind, I have learned to see humour in unlikely places. I now use voice-activated software to type because my fingers move stiffly and slowly over the keyboard. The software insists that my name is ‘Patel’ not ‘Adele! My body moves slowly, like a movie stuck in slow motion … sometimes I want to yell out “Hellooo! I‘m still in here!”
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.’
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 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.
From time to time, when frustration builds and I need a good cry – but I have a loving husband and good friends whose open arms soothe my soul. 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 … 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.
Despite the many challenges in my path, I feel extremely fortunate that – after so many years – I am still able to pursue activities that I enjoy (albeit with some accommodations and within the boundaries imposed by this condition). I write, I do woodcarving and I volunteer at Hospice. And – always - a visit with my wonderful grandchildren guarantees unadulterated joy.
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.
For more information about Adele Gould visit her website: adelegould.com
