MY DAD’S BEEN MY BIGGEST HERO MY WHOLE LIFE
The first time we met Carol Skinner in 2015, she was so relentlessly positive, so often smiling in the face of approaching death, the pair of us (writer and photographer) left the apartment holding back tears. (Strange. Was she not the ailing one?) Three years later, she’s very much alive — surprise, surprise — and still fighting the good fight against ALS.
“I was living as though I was dying,” she said of the early months with the terminal illness. “I got my affairs in order. I gave away things like my high school yearbook and my wedding dress.” Then got back to living. Last weekend, for instance, she returned to the annual ALS walk, where her teams have raised more than $26,000 during the past four years. Fortunately, Skinner has strong family support, as exemplified by her father, Peter, who has become “an assistant advocate.” She’s not surprised. “My dad’s been my biggest hero my whole life. He’s always, always told me I could do anything, my whole life.”
The only daughter in a middleclass Montreal household, Carol remembers her father being absent for big parts of her childhood as he travelled the world as a pulpand-paper executive.
“He always tested me on geography. He gave me my love of travel and other cultures. He would bring me dolls from all these foreign countries.”
Her father instilled a work ethic in the children, she said, which served her well in her career as an art therapist. She knows how difficult the illness has been on her parents, who had moved to Ottawa, partly to help her with errands and ongoing care and support, not to mention multiple holidays.
“Dad is a very sensitive guy on the inside. He comes across as a fun-loving, kind of sarcastic guy, but he’s a softie on the inside, and I know it’s breaking his heart.”
ALS is a neuromuscular disease that attacks, in layman’s terms, the body ’s central wiring system. Over time, the brain and its main muscles no longer communicate properly, making limbs hard to control. Eventually, speech, breathing and swallowing are affected.
Skinner can now only walk short distances with a walker, and otherwise relies on a wheelchair. She can’t load the dishwasher or lift her arms very high.
She now has daily nursing care. But her breathing and swallowing are normal and her spirits, many days, are good.
She continues to advocate for more research funding, pressing MPs to make good on a motion indicating support for ALS federal funds. All the while, she knows clinical trials and experimental drugs likely won’t help her, as she is too advanced with the illness to take part.
So, she’s planning a trip to Tuscany later in the year, ALS be damned. Life goes on.
“You have to be grateful for what you have instead of regret what you don’t have, because then you’ll never be happy.”