"Keeping my Parkinson's secret meant that not only did I have to cope alone with the disease ... I also had to deal alone with the tension of trying to hide it."
To Tell or Not to Tell?
By Claire Berman
December 11, 2001 - the day that changed my life - was unseasonably mild. I had an appointment to see a renowned specialist in movement disorders to check out a slight tremor of my left hand. The streets around the medical center bustled with lunch-bound men and women edging past the halal food carts and outdoor vendors selling pashmina scarves, woolen mittens and African jewelry. Christmas was in the air.
I went inside, and located the designated office. The doctor was white-haired, a bit stooped, and looked his eighty-plus years. "When did you first notice the tremor?" he asked. In November, I told him. Any stiffness in my legs? No. Did I have trouble getting out of a chair? A car? Had my handwriting changed? No, and no again. He had me move my hands, legs, touch a finger to my nose, then led me to a narrow hallway, instructing me to walk to its end, turn and come back.
"You're in the early stages of Parkinson's disease," he said. "Drink a lot of water and exercise. See me in three months." And that - word for word - was that.
I managed to make my way outside. The scene before me was much the same as it had been when I arrived, but all I saw was a blur. In disbelief, I found myself walking thirty blocks downtown to Bloomingdale's, wanting to do something normal. Thoughts crowded my mind: what would this mean for me? How would I handle it? I bought a pair of gloves and came to a decision: I would share the diagnosis with my family, but with no one else. I swore them to secrecy.
"To tell or not to tell?" is a question that looms large for many people who are faced with a serious ailment. All I knew was that I needed time to learn about this illness. I needed privacy. More than anything, I feared being viewed by colleagues and friends as other, being treated with pity. I was concerned that the revelation might hurt my career as a writer. Would an editor take a chance on signing me to a book contract? Would people hire me to give a workshop? A keynote speech?
Keeping my Parkinson's secret meant that not only did I have to cope alone with the disease and its progression; I also had to deal alone with the tension of trying to hide it. At dinner with friends, I would keep my left hand hidden under the table. At the evening's close, I would turn to my husband and ask, "Do you think they noticed?"
Fact is, some did. The first disclosure came at dinner with a good friend. We were deep in conversation when she stopped in mid-sentence, her voice rising, to ask, "Claire, what is going on with your finger?" There it was - the fourth finger of my left hand, tapping away. Keeping a secret is not the same as lying, and I'd decided that I would not lie. "I have Parkinson's," I said ... and then swore her to secrecy.
I changed doctors. For a time, my medications were able to control the tremor. Still, I found every outing, every encounter fraught with tension: would a sudden jerk of an arm or movement of a leg give me away?
Over time, I found myself compartmentalizing people into those who "officially" knew and others whom I suspected of knowing by the coded language that lets us secret-keepers know that they know. "How are you?" when asked with a special intensity, is seen as a dead giveaway. "You're looking very well" is another.
Should I tell? Slowly, tentatively, I tested the waters. My fears were not unfounded. One day, I received a phone call from a woman at a renowned New England hospital where I'd given a talk that had been well received. "We want you back!" she said, offering to raise my fee. "Great," I said, and in a burst of candor added, "I should tell you that I have Parkinson's and sometimes my left hand trembles." "No problem," she said. "I'll get back to you with the date." But she never did.
Six or so years into the illness, I decided to tell all my friends, and found my candor met with their caring. Indeed, many confessed that they already knew - had known for some time, in fact - but they respected my choice to conceal it. Now they felt free to offer their love and support.
I've made new friends as well. Being "out" has enabled me to become active in the Parkinson's disease community, to advocate for research and better services for people with Parkinson's disease and their caregivers, to learn and to laugh with men and women who share my challenge ... and my hope.
Ms. Berman of New York, NY, is a member of PDF's People with Parkinson's Advisory Council (PPAC). She is the author of several books, including Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive. She also wrote PDF's booklet, Diagnosis Parkinson's Disease: You Are Not Alone.