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Only two or three years to live? What to do, right now.

12 June 2015

“My career was ripped from me, my home was ripped from me, my future. It was devastating.”

On Sept. 19, 2013, after a needle probed her wonky muscles, Carol Skinner was given the test results straight away: Her life was ending, soonish and cruelly.

ALS, or Lou Gehrig’s disease, the neurologist said. Count on two or three years, maybe five. And they will not be great ones — so ready yourself, travel, move houses, right now. She stopped working the very next day. Husband Travis called her parents, who were on a Mediterranean cruise — she could barely form words — and they jumped ship, flew home.

“My career was ripped from me, my home was ripped from me, my future. It was devastating.” She smiles keenly as she says this, a habit or defence she’s picked up, all the more to break your heart.

Montreal-born, the youngest of three, Skinner is 43. She walks with lower leg braces now and can manage short distances; otherwise there are manual and electric wheelchairs to get around. All in all, she is holding up fairly well, though she can feel the advance of the muscle disease, for which there is no cure.

Who ever thinks about time, whether we have bushels more, or just drops? The terminally ill do. And Carol Skinner wants to concentrate on the living part, not the dying part.

Skinner, a McGill graduate, is a natural leader. She was a longtime camp counsellor and, at the time of diagnosis, was an art therapist with the Canadian Mental Health Association, working with some of the city’s most vulnerable citizens in group settings.

So, sitting still was not to be. She agreed to be a lead walker and spokeswoman for ALS during the annual fundraising walk on Saturday that leaves the Canadian War Museum at 11 a.m. (www.walkforals.ca/ottawa for more info.).

Travel has always been a passion of hers so, with the financial help of family, she hit the road. You can see a great deal in two years: Thailand, Singapore, Hong Kong, Japan, San Francisco, Antigua, Mexico, Italy, the Mediterranean, bringing her life travel list to about 30 countries.

“Live your passion now,” she said Tuesday in her new Kanata apartment. “Don’t wait. Live for the now.”

She discovered she had the remarkable support of extended family. Travis, a chef, is originally from South Africa. His brother Dayne and Dayne’s wife Kate have actually moved to Ottawa from New Zealand for a year to lend a hand.

“Talk about heart? They gave up their whole life, moved across the world, rented their house, sold their car. How do you repay that?”

Carol also became an active blogger (livelovelaughwithcarol.com). One of the more insightful categories is called What Would You Do? — a reference to living under a deadline. There were some remarkable entries from family:

“I would give myself the right to be selfish.”

“Have babies that you will meet. Nothing would make me happier.”

“You know that if you have a job to do that takes a day, but get given a week, it takes you a week to complete. I’ve been taking a long time to do the JOB of Living.”

All of which to say this: Carol’s illness has spread a different kind of urgency through her circle of family and friends, a resetting of life priorities, be you sick or well.

“I can’t say that I’ve accepted it. I still break down. I still am angry but, at the same time, now I feel blessed,” she said of the outpouring of support. “I’m very lucky.”

ALS, or amyotrophic lateral sclerosis, is a disease that attacks the nerve cells and leaves muscles paralyzed. There is no cure and little treatment. The need for funding is great: it can cost the average patient $150,000 out of pocket.

Skinner said she first noticed something was wrong in 2013 when she began to trip unexpectedly from a “dropped foot” condition. An active person, she began to suffer fatigue and avoid stairs. She noticed her cup was shaking during tea breaks. She fell in Billings Bridge Shopping Centre.

There were tests and more tests, an eventual trip to neurology. After diagnosis, Carol and Travis put their Crystal Beach condo on the market because it had a second floor. They moved to an apartment in Kanata, then moved again when a unit came available with a walk-in shower. It will be like this to the end: Constant adaptation. The couple are grateful for the federal government’s expanded compassionate care leave, which they will need.

“My philosophy now is to just keep doing things until I can’t and not wonder about ‘what if’.”

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