Clayton's journey

Kamloops resident Clayton Smailes is a fighter. He suffers from debilitating ALS but those who know him say he'll never quit.

He can't hug his sons. He can't hold his wife's hand. He can't feed himself. In fact, there is almost nothing Clayton Smailes can do on his own anymore.

But there is one thing he can do and that's raise awareness about a disease that he doesn't want anyone else to get. So, at the request of the ALS Society of B.C., he wrote a story about what it's like for a young man to face a diagnosis of ALS and then live with it until it slowly saps everything except his mind from him.

Smailes says he's fortunate to be surrounded by a strong circle of friends and family. His wife, Colleen, has been his rock, caring for him at home for years until in March he decided it was time to move into Marjorie Willoughby Snowden Hospice House.

"I have a hard time accurately expressing how I feel about Colleen. She would never have chosen to be a nurse or caregiver as a profession, and yet she was thrust into that role. Nobody could have done as good a job as she has and for as long as she has," he writes.

On top of working, caring for him and being a mom, she was up every two hours in the night to turn him.

"She deserves better than the hand she has been dealt and I will never be able to thank her enough," Smaile said.

In return, Smailes' friends consider themselves lucky for knowing him.

"He is truly an inspiration," said Kent Simmonds, a colleague from TV-7.

"He chooses to live. He's not relinquishing anything, not his role as a father or as a husband or as a decision-maker. Any decision he and Colleen makes, he's right there."

Simmonds, who gets choked up thinking about his friend's strength, does as much as he can for Smailes, motivated strictly by "my love for him."

And, he said, he is not alone.

"He has an amazing circle of friends and family support. His nickname is Magnet. It has been since he was a kid. People are naturally drawn to him by his spirit and his spark."

One friend wired his room at the hospice house so Smailes can control his lights and television. He communicates through an Eye Gaze computer, offered by the society on a trial basis.

For Smailes, the computer has extended his independence and connection to the outside world.

Wendy Magee, ALS society executive director, said the society hopes to be able to add Eye Gaze to its equipment loan program as soon as funds are raised and the technology is adapted for ALS.

See today's (June 10) Kamloops Daily News for Clayton's story.

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