‘IT SHOULD HAVE BEEN ME’
For former Montrealer Carol Skinner, ALS has been a devastating diagnosis. But it’s been devastating, too, for the father watching his daughter deteriorate before his eyes, writes
ALS kills 80 per cent of sufferers within two to five years, a terrifying statistic for Carol Skinner, on the eve of her fifth anniversary.
Today she uses a walker inside her small apartment — a wheelchair everywhere else — and doesn’t drive or work anymore, or even cut her own food, or wash her own hair. On a good day, she can write her name. On a bad day, there are things she can hardly speak of: “I’m scared to death.”
Peter Sharman would trade places with her in a heartbeat. It is what a father would do for his child.
Since Carol’s diagnosis in September 2013, Sharman, with his engineering brain, has been making notes about what it’s like to be the parent of a child with a terminal illness. The short version runs to 19 pages, parts of which make for a heartbreaking read.
“I remain frustrated that it wasn’t me that was diagnosed,” he writes. “I’d give a lot to take this away from Carol and so often feel regret that it should have been me, because I’ve lived a relatively long, busy and fulfilling life already.”
We’re on the 21st floor of a westend highrise, the windows giving way to a breathtaking view of the Ottawa River. It is beautiful outside, tidy and luxurious inside, where he stands relaxed in shorts and sock feet, a few sleeps before another Father’s Day.
Of course he would trade for his daughter’s suffering. It is what a parent does. To protect is to love.
We seldom focus on the parent’s agony in the face of terminal illness, a father’s helplessness. Dr. David Taylor, vice-president of research at ALS Canada, has seen it up close.
“It’s the pain,” he says, “and it’s a different, unimaginable pain. You see in their faces. They’re watching their child go through this and having to consider the notion of the child dying before they do.”
With a trace of an English accent, Sharman is retelling the story of how he and his wife, Louise, were told about Carol’s diagnosis. They were on a cruise on the Black Sea, just outside Istanbul, when a phone message arrived from Travis, Carol’s husband. There was shock, of course, and tears, the kind a stiff drink doesn’t take away. What, even, was ALS?
They abandoned the second half of the cruise and flew home immediately, despite the couple’s urging to finish the trip.
“I tell you how you compare it: Somebody just died. There’s no difference. Because to me, she had died, in that instant.”
Life was about to change, in ways he never imagined. Partway through Carol’s illness, her brother, Don, died suddenly on the Caribbean island of Saint Martin. Peter and Louise had now lost their oldest child at age 52.
Newly into retirement, his back, meanwhile, gave him loads of trouble, resulting in surgery. He had to give up golf, which he played four times a week, and a beloved sports car, which he couldn’t bend into. Her world was shrinking? “It really tore me apart understanding that she’d never walk again” — and so was his.
They sold the family home in Montreal and moved to an apartment in Ottawa, in large part to support Carol and Travis. Every day, she is on his mind. How could he help but not continually intrude?
“My personality went from type A to type L (for “lost”) — and I don’t feel I’m me anymore. I know others see that and understand a little bit,” he wrote. “But pity is the last thing we need.”
He is a charmer, with these playful eyebrows. Born in England, he survived the Blitz in London during the Second World War and arrived in Canada as a teenager, landing in tiny Ocean Falls, B.C., a beautiful but isolated mill town of maybe 2,000 souls.
“I lost my accent in three weeks.” School wasn’t for him — “I’m the only guy from England who failed English” — but he had a salesman’s touch and a driving ambition. He was soon working in the mill, learning all aspects of the pulp and paper trade.
In 1961, he was off to Vancouver, where he met and married Louise. Three children followed, then a move to Montreal to start an office for a pulp and paper giant. It would become home. Carol was born seven years after the boys, the best mistake, as they say, the couple ever made.
“She’s still so cheeky. Still the same. ALS, no ALS, she’s the same as she was at three years old.”
Her teenage years — when she babysat for Montreal Expos great Gary Carter — were a mystery to him. “Between the ages of 13 and 19, my daughter left the human race. She’d have all these friends over from school, university, at the pool. I never understood a word they said.”
Since her diagnosis, he’s dived into the ALS community. There is no effective treatment for the illness, made famous by baseball great Lou Gehrig. And he’s quite shocked by the lack of government support for research.
Look at the millions spent on heart and stroke, or cancer, or diabetes, he says.
ALS, he says, gets zero direct dollars.
There are some 3,500 Canadians living with ALS every year, a number he thinks is too small to spur big pharma to explore new medications.
“Is 3,500 lives a year not worth it? Not worth anything ? When you can spend $605 million on the security of Charlevoix?” he asks of this month’s G7 meeting.
Sharman accompanied his daughter to a recent meeting of the ALS caucus on Parliament Hill, a group of MPs formed in the wake of the death of Ottawa-Vanier MP Mauril Belanger of ALS. He brought the room to a standstill, his daughter says.
“I consider myself an assistant advocate to Carol.”
His mission now, and it is a big one, is to help create enough awareness of ALS that momentum builds for broader public understanding and more urgent scientific research.
“I guess that would be the best Father’s Day gift. Have a drug for her and let me go.”