ALS weakens body, but not spirit

I wanted to write his story and Serge agreed to share his journey with me.

I knew Serge Vaillancourt before Amyotrophic lateral sclerosis took its toll. I saw him at the odd city council meeting, on TV or in the newsroom – always spreading the word about the B.C. Transplant Society and the need for people to make the decision about organ donation. He had a strong, compelling voice and always spoke from the heart.

When my editor told me Serge was waiting in our meeting room to talk about a fundraiser, I had that picture of him in my mind. I nearly didn’t recognize the man standing in front of me. He was frail. Not even loose clothes could hide that. His voice was slurred and his fingers were bent and unco-operative. He leaned over a binder stuffed with old newspaper clippings of his advocacy work and struggled to grip and drag the zipper down.

“I’m sorry,” he told me as he put his entire elbow into the work. “I have ALS.”

Serge spent the next hour talking to me about his diagnosis and his new mission to bring awareness to ALS and the ALS Society of B.C.

It sounded like a devastating disease, so I know I gave him a shocked look when he said he counted himself fortunate. After all he’s survived, how could he not be angry?

“There are people in the world trapped in a burning building without any hope of getting out,” he told me. “I look at what’s good. I have a loving wife and a family who supports me.”

And that summed up his perspective on life. It was also the reason I didn’t want to just write a story about the fundraiser. I wanted to write his story and Serge agreed to share his journey with me. He’d bare his soul if it meant helping others, he once told me, and he hoped the exposure would help the ALS society and its patients.

I spent the last three months visiting him and his wife, Nicky, and I know it wasn’t easy for them. Nicky was not only grappling with the physical, mental and emotional exhaustion of seeing the man she loves slowly die, but setting aside time to explain those feelings to me. There were days she opened the door and I could see tired rings around her eyes. She’d give me a strained smile and wave me inside.

I was there at the hospital when he had a feeding tube put in his stomach. She wanted to go into the prep room to be with him a little longer before he went into surgery but she hung back, I found out later, because she thought it was too crowded with a reporter and photographer already there. She made sacrifices and she did it for him.

During my time with Serge, I saw the symptoms of disease advance. He has gone from walking independently to needing the help of a wheelchair, from eating food Nicky cut into pieces to struggling to swallow anything at all. I’ve seen it become difficult for him to speak, his voice become harder to understand. I listened to his concerns about getting a feeding tube and was there when he went into the operating room. We shared laughs when Serge showed off his new scooter, nearly running over our photographer when he hit the accelerator too hard. And there were tears. A lot of them.

I never saw Serge waver in his determination to find the silver lining in his daily struggles and he’d always take time to explain his symptoms and the equipment that helped maintain his quality of life. He’d have me touch his leg to feel the twitching muscles or show me the biPAP machine that helped him breathe at night. It was about giving me education in ALS that I could share with others, but I came away with a much larger lesson in life. I learned it’s not what you get, but how you deal with it that counts; that we should live each day to the fullest and that you don’t need a strong voice to be a strong advocate.

Thank you, Serge and Nicky, for sharing your story.