2000 Charles River Review: Instant Replays

Michael J. Fox, twitching from the side effects of medication, announces on the evening news that he's retiring from acting to spend more time with his family and to raise money for Parkinson's Disease--and it all comes back. I imagine him as I remember my father--slumped over in a chair, head bent forward, his body stiff and expressionless, his eyes glazed and not blinking. A crumpled, white handkerchief in his curled fingers, he tries to catch the colored dribbles that fall from his mouth--orange and green dribbles from the pills he can no longer swallow. The white shirt that he once wore to work has large, brown, teardrop-shaped stains on it, the remains of baby food fallen from his chin. His khaki pants hang low off his emaciated waist.

In a few seconds, I'm back to reality. There's no reason to get macabre; the two situations are different. Parkinson's research has moved forward in the last 50 years. New drugs reduce the symptoms and slow its progression. Brain surgery and fetal implants have slowed its course and lessened symptoms in some patients. New information about nutrition and physical therapy help improve the quality of life. Patients live longer if they follow medical advice. Michael J. Fox has the resources for the best medical and nursing care. My father went downhill quickly because few of the drugs, little of the information, and none of a movie star's money were available when he was sick. He stopped working when I was eight and died three years later.

I also think about their similarities. Bright, ambitious, clean-cut types, filled with vitality and promise, halted in midcareer. An irrevocable decline, an incurable illness. A carpenter by trade, my father had half-finished plans to build houses, buy apartment blocks, start a construction firm. Everyone thought he would be the first millionaire in the family. Like a car wreck or a shooting on the news, a fatal illness is something that only happens to other people until it happens to you. It can challenge your belief in God, make you question the purpose of life, reorder what matters to you, and suddenly give the word "time" greater meaning. It can devastate your family.

About a year after my father got sick, his brother, Louis, developed the same symptoms. It started with a mystifying loss of energy. Then a tremor started in one hand. A stiffness began in his limbs. A foot started to drag a little. Louis, the prodigal son, had cut himself off from the family as a young man and moved to Chicago. He returned home when he realized he was sick. The family was baffled and frightened; Parkinson's was not supposed to be genetic. Then a third brother, Ralph, developed the same symptoms, and the family was in shock. Ralph was a successful banker, a formal, dignified family man. He still wore a white shirt and tie when his fingers could barely manage either. After he got sick, everyone thought the unspeakable. My father had eight brothers.

Within four years, my grandmother buried three sons. We all lived in the same neighborhood, watched the same ugly declines, heard the same cries at the funerals. My grandmother wore black for the rest of her life. The family was overwhelmed. They couldn't deal with it, so they didn't. No one talked about it. "Life goes on," said my Aunt Marie after one of the funerals, "What can we do?"

Two years passed. I was in high school, worrying about other things, when someone noticed Aunt Marie dragging her left foot. Her face changed. The loving smile that she lavished on me and my cousins got stiffer and stiffer. Within a few years she was dead--and so were the living. This one broke our spirit. A family loaded with warm, energetic, sensitive personalities turned as cold and flat as the tombstones that marked the graves. It was as if none of it ever happened. Denial. The large, lively gatherings that I always associated with my grandmother's house were fewer and smaller. When you walked in, it felt as if someone had lowered the wattage of all the bulbs.

Finally, it stopped. The remaining six siblings lived through middle age. One of them, my Uncle Emil--a chronic alcoholic--developed Parkinson's in his seventies. The youngest, my Uncle Ben, a bachelor, is the sole survivor--alert and spry at 84. He resembles my father. I visit him whenever I can. It's a chance to see how my father might have aged.

Life did go on. The grandchildren went to college, married, and started having their own children. My grandmother lived to 94 and saw several great-grandchildren. Small children were one thing that always made her smile. She loved to pinch their cheeks and admire them. Many in the new generation didn't even know what Parkinson's Disease was. Then my sister Anne started getting tingling feelings in her right hand. A brilliant businesswoman who taught at Harvard, consulted on the Gemini and Apollo space programs, and was employed at a think tank in Palo Alto, she refused to believe what was happening to her. She scoured the country trying to find a neurologist who would tell her it wasn't Parkinson's Disease. It was. Two years later another sister, Mary Anne, with five children of her own and maybe the smartest of us all, started dragging her left foot. Both are dead now.

Parkinson's Disease is a movement disorder that results from a depletion of the neurotransmitter dopamine in the brain. Brain cells die off, and as a result muscles no longer get the message to move. Everything slowly grinds to a halt. You walk less, blink less, swallow less, until you breathe less and die. Often an infection or pneumonia sets in earlier and kills you. That's what happened to my father.

Medication can lessen the symptoms. Nothing stops it. There are a number of theories about what causes it, but most Parkinson's is idiopathic: cause unknown. In the last ten years, neurologists have discovered a number of multiple-member, three-generation Parkinson's families from around the world. Researchers have identified a Parkinson's gene. My family is at the center of the study. A search into our European roots has shown that it existed in previous generations also. We didn't know.

It's a sunny, cold January afternoon. I'm walking across the Mass Avenue bridge the day after I saw Michael J. Fox on the news. The night has left a fresh blanket of snow on the Charles. Suddenly, to the right, my eyes catch my shadow walking on the frozen white river. It gets bigger as I approach Cambridge. I scrutinize the black figure as he walks. Do his arms swing normally? Do his feet walk in unison? Is his head tilted forward too much? Is there anything unusual about his gait or balance?

Sometimes someone else notices your first symptom. They might ask if you've injured yourself or why you're limping. When you've grown up with it, you can spot it in the face, as I did with my sister Anne. She was less animated, less vivacious--the same stiffness I saw developing in Aunt Marie. It's the beginning of a rigidity that ultimately gives the face a mask-like quality, frozen like the river. To me it's become a death knell. I've seen it on Muhammad Ali, the Pope, Janet Reno. Instant replays. Spooks me every time.

My brother Anthony is less active than he used to be: that's how it started with my father. My sister Mildred complains about arthritis; I hope it's only arthritis. I get a prickling feeling in my hand one day. Is this the beginning? Once a friend asked if I'd hurt my leg, and I felt a quick anxious rush and a shortness of breath. Medical paranoia. Now I'm divorced. Who would take care of me if I grew disabled? Should I get better medical insurance? If my time with full capacities is going to be cut short, how do I want to spend it? What's important?