I won’t name names and titles, but my brief depression over having Parkinson’s was caused by a book. I waited for two weeks for a book to arrive from Amazon.com, one of those Everything You Wanted to Know But Were Afraid to Ask things, written by a layperson just like me, someone who had the disease and wanted to share personal experience. I tore into the book with my usual flair and enthusiasm. True, I’d just been diagnosed with an incurable, degenerative disease, but I had goals. I always wanted to be a professional writer, so as the disease took its toll, I reasoned, I’d have more and more time to write. I’d focus myself on that novel that never quite got completed, or on that half-written project from years ago.
The book told about the disease and its symptoms. It mentioned the stages and how it progressed. I began to understand the subtleties of the disease.
But then the writer said something like this: You had goals before. Now you have to give up and let them go.
Granted, the writer was trying to encourage the patient to find a new focus in life, but still. I couldn’t accomplish the goals I’d set out to reach from the time I was five? I read on. I felt despair for the first time.
The writer told about advanced Parkinson’s. Told me to expect to be bedridden.
Forget work. Forget writing. That I’d lose the ability to do everything, from buttoning my shirt to eating my food.
Then the writer said the nastiest thing I’d heard yet. The writer’s doctor gave a timetable. About five to ten good years, the doctor said.
After that? Kerflewie.
I was shocked. I went onto the Early Onset Parkinson’s Message Board and asked. There was general grumbling about the question, but nobody denied it. Someone emailed directly to the account and said that was about right.
I barely had enough money in my checking account to pay this month’s rent. What would happen when I couldn’t work anymore in—gulp—five to ten years????
And then the writer said the worst thing of all: If you have something you want to do or someplace you want to go, you’d better do it now, while you still can.
After nearly three months of depression over these nasty words, I got up the courage to ask my neurologist, who said the whole idea was ludicrous. “There is no time table,” she said. “It’s different for everyone. Live.”
And so I realized my new mission in life. I’m not going to find a cure for Parkinson’s. I can’t beat it by myself. I can’t turn back the clock, and I cannot go back and escape contracting it.
But I can change my attitude, and consequently the attitudes of others. And so, here is an open place for any patient with any disease, from Parkinson’s to Lou Gehrig’s to MS to HIV to cancer. We’re all in this together. Share with me the elements of your experience and what we can learn and do together to help somebody else.
Note: Today’s comments were partially used in my stage play, Shaken, which had a highly successful premiere at San Jacinto lege Central in Pasadena, Texas. If you would like to buy a copy of the text or purchase the rights to do a production, please contact me, the author, at this address.