Cover

‘THAT DISEASE IS AN INDIGNITY’

A son recalls how Parkinson's took away his father by degree, a little more of him lost every day

PEETER KOPVILLEM April 29 2002
Cover

‘THAT DISEASE IS AN INDIGNITY’

A son recalls how Parkinson's took away his father by degree, a little more of him lost every day

PEETER KOPVILLEM April 29 2002

‘THAT DISEASE IS AN INDIGNITY’

Cover

A son recalls how Parkinson's took away his father by degree, a little more of him lost every day

PEETER KOPVILLEM

My father died five years ago in July of complications arising from Parkinson’s disease. One complication was that he could no longer move. Another was that, in part because of his immobility, a chest infection set in while he lay hospitalized. Muscles that no longer functioned couldn’t clear his lungs. That’s what killed him. It was not an easy death. I remember the reaction of my kids’ pediatrician when I mentioned that my father had Parkinsons. It was the first time I had ever seen a doctor angry. “That disease is an indignity,” he hissed. Flow much of an indignity? My father was hospitalized after, one night, somehow managing to stand up and soil himself, then slipping and breaking his

hip. He died some six weeks later, age 70. He was diagnosed in the mid-1980s, after experiencing some weakness in his arms. Over the following years he went through a series of reactions: shock, belligerence (I’m going to fight this thing), anger and self-pity (how could this happen to me?), resignation. We, his family, went through a series of reactions: shock, belligerence (were going to fight this thing), anger and self-pity (how could this happen to us!), resignation. We never totally gave up—us trying to get through during his worst moments, him trying to battle back. The last time I saw him somewhat cognizant, he could no longer speak. But his eyes were open with that characteristic zombie-like look many Parkinsons patients get—seemingly staring right through you because eye muscles

no longer work. I told him to close his eyes and sleep, then watched him struggle with the command. With an effort of great will he finally closed ... his mouth. For the last weeks of his life, he was in a coma, lying in his bed at Joseph Brant Memorial Hospital in Burlington, Ont. We would stand around his bed during that lost July, weighed down by inevitability, watching as this man who had been musician, choirmaster, chemist and a member of the world’s small fraternity of asphalt experts, slipped away. Black humour helped; his dementia (some 27 per cent of Parkinson’s patients suffer from it) provided grist for the mill. My mother— she was the caregiver, and for her my father’s hospitalization was almost a relief— recalled how one day she had caught him with the front door pulled open as far as

the locked safety chain would allow, whispering to the outdoors, “Help, I’m being held prisoner by a witch.” On another day, as my sister and I kept vigil, his leg suddenly twitched. “Chasing rabbits,” I said. We both laughed, from the gut, for what seemed to be the first time in days. Insensitive? No, just coping. When he died I didn’t experience an explosion of grief. That may have been due in part to my being raised in a small ethnic community, more extended family than anything else, and having already buried men and women whom I cared for almost as deeply as my own parents. But another reason may have been the nature of Parkinson’s itself It takes your father, mother, husband, wife away from you in degrees, a little more of them lost to you every day. By the time the actual moment of death arrives,

you’ve already been mourning for years. I think of all this more these days, seeing Michael J. Fox on my TV screen. I wish him well, both personally and in his efforts

to raise consciousness and funds for the fight against the disease. A few nights ago, channel-surfing, I stumbled across Back to the Future, with Fox as the perpetual youngster he played for so many years. That’s my mind’s-eye picture of him. It’s much the same with my father. Thinking of him I inevitably remember a photo I have somewhere, one I know so well I don’t even have to pull it out. The two of us—me as a fouryear-old sitting on his shoulders, pretending to pull his hair as we both mug for the camera. He is healthy, a young man with a young family, glowing with vitality, on a summer day when the sunshine seems eternal and there is never any thought that your body might betray you. Eul Macleans Deputy Editor Peeter Kopvillem joined the magazine in 1984.