A VOICE FOR THOSE WHO DON’T HAVE ONE
Skinner, diagnosed with ALS, chooses to focus on what she can do
There are the things she can no longer do, like walk without assistance: When she goes out, it is in a wheelchair now. Her arms are growing weaker and she can’t hold anything for long. Her handwriting has grown messy. In December, she had to stop driving.
Three years ago this week, Carol Skinner learned that she has amyotrophic lateral sclerosis, a progressive degenerative disease that attacks nerve cells in the brain and the spinal cord; as the cells are destroyed, people lose the ability to walk and, eventually, to speak, swallow and breathe. There is no effective treatment for ALS, sometimes called Lou Gehrig’s disease, and its cause is unknown; it is often fatal within five years.
But Skinner, 44, has chosen to focus on what she can do, not on what she can’t — on what she has and not what she has lost. “I don’t want to waste the precious time I have left,” she said in an interview from her apartment in Ottawa, where the longtime Kirkland resident and McGill University art history graduate makes her home now with her husband, Travis Skinner. “I want to be a voice and an advocate on behalf of people who no longer have a voice.”
And so she has been sharing her story, speaking at ALS fundraisers and research forums, doing her part to raise awareness of a disease that was not much talked about until the ALS Ice Bucket Challenge, with people everywhere dousing with buckets of ice water, went viral in the summer of 2014 — and raised an astounding $115 million.
The symptoms began in early 2013, when her legs wouldn’t hold her up as she tried to skate on the Rideau Canal. At a family wedding in April, she tripped over her feet and fell repeatedly. She continued to lose her balance. With an electromyogram on Sept. 19, 2013, there was the devastating diagnosis.
She had to give up the work she loved, as an art therapist with the Canadian Mental Health Association. She and her husband were forced to sell their home, which had two levels.
Skinner speaks with a disarming directness. ALS “is terrifying to live with. You are watching your body give up on itself. Day by day, I discover activities I can no longer accomplish on my own,” she said. “At one point, I thought it had stolen the essence of who I am as I struggled to find meaning, purpose and a reason to live.”
She has found that meaning — in the decision to share her story. In addition to speaking publicly, she keeps an inspiring blog (livelovelaughwithcarol.com).
“Carol’s ability to articulate the hardships that come from ALS and still find very positive ways of communicating is so powerful,” said Tammy Moore, director of the ALS Society of Canada.
This summer Skinner was recognized for her advocacy work by the YMCA’s Camp Kanawana, where she spent five years. When she started at the St-Sauveur summer camp as a counsellor in the summer of 1990, Carol Sharman, as she was known then, was a self-described “shy girl.” But in the camp environment, she blossomed. She rose through the ranks to become supervisory staff.
“Camp made me into the woman I am today,” she said when we spoke. Through camp, she said, she became a leader.
Skinner is this year’s recipient of Kanawana’s Pip award, which recognizes the contributions of alumni who best exemplify the camp’s spirit as expressed in its motto: Non Nobis Solum — Latin for Not for Ourselves Alone.
“The purpose of this award is to recognize people who have taken the values they learned at Kanawana and applied them to the larger world,” said Andrew Caddell, who established the award as a memorial to his father, Philip “Pip” Caddell and to his son James Caddell, both alumni. For Skinner, he said, the award is an acknowledgement of her determination and dedication to fight against ALS and of her courage and grace in playing the cards life has dealt.
“What I’ve learned from this magical place — my skills, my confidence, my creativity — all leads back to non nobis solum, not for ourselves alone,” Skinner said when she received the Pip award in July at camp. “I can say I have had an amazing life. This is what the people and spirit of Kanawana have done for me.”
When news spread of her illness, “Kanawanians from all over the world sent me words of encouragement, helped me to fundraise, and showed up to events. They helped me to feel that I was never alone in my illness,” she said. The turnout of 140 at a wine-and-cheese reception honouring her at the camp’s family, alumni and friends weekend this month was the highest in the award’s nine-year history.
If asked to choose a word that best describes Sharmie, her nickname at camp, it would be “spirit,” said Bruce Netherwood, who was her camp director at Kanawana and who travelled from Massachusetts with his family to present the award to her during alumni weekend. “Carol has always had such a joyous, positive spirit.”
When Netherwood, himself a Pip Award-winner, left Kanawana to become director of the South Shore YMCA Camp Burgess & Hayward in Cape Cod, he hired Skinner: In her five years there, she became director of Hayward, the girls’ camp. “As during her time at Kanawana, her caring, thoughtful ways had a profound impact on the campers and staff there,” he said.
But it was only after her ALS diagnosis “that the rest of the country got to see and know this incredible woman. Carol has taken this exceedingly difficult situation and has used it to serve others.”
Skinner and her husband, Travis, will celebrate their seventh anniversary later this month — and she feels blessed to be as in love with him as she is. “We have always had that love,” she said. They talk about things that few couples their age do — things like death and wills and power of attorney. “But it is also a lesson about how you should appreciate love, how you should appreciate what you have in front of you now, because you could lose it in an instant.”
She and Travis are just back from a Baltic cruise, a Christmas gift from her parents and, as she prepares to celebrate her 45th birthday in October with a party, Skinner is grateful for friends and family and a husband she calls “amazing.”
“We just adapt. I have friends who help, a support worker who comes in and helps me get up and get ready in the morning. With help from others and determination, I can continue to live,” she said.
“I have good days and bad days. There are days I can’t button my pants — my thumbs stop working because I am cold or tired — and I always have to plan rest around activities.” There are days she cries — and then feels better for having let the sadness out.
“I want to focus on the positive ... I have been so lucky to have been given a time to appreciate how precious life is.”
In the time since her diagnosis, two colleagues have died. In March, the older of her two brothers died of a heart attack while boating with friends in the Caribbean. Don Sharman was 53. “It happened very fast,” she wrote on her blog. “I think to myself, ‘we should all be so lucky.’”
“I was seriously having some survivor’s guilt,” she told me. “And a good friend of mine said, ‘You’re not finished yet.’ That helped — and made me proud. Not to sound selfish, but maybe I can still do something to help others.”
We just adapt. I have friends who help, a support worker who comes in and helps me get up and get ready in the morning. With help from others and determination, I can continue to live.