Friday, 4 December 2015

Not An Open Letter To Mauril Bélanger

I would like to write an open letter to Mauril Bélanger, the Ottawa-Vanier MP and candidate for Speaker of the House, who was recently diagnosed with ALS. I would like to tell him what to expect and what he can do, both as an individual and as a public figure, in dealing with this horrible disease. I would like to offer him guidance and comfort, words of wisdom and counsel. I would like to tell him how to deal with his illness, his family, his life with ALS. I can do none of those things.

ALS is a horrible disease. One of the worst horrors of this illness is its unpredictability, the randomness of it all, the way it strikes one person one way, and another person a different way. For Mauril, this scourge has started with his speech. There is an awful irony in a politician first losing his ability to speak. Bulbar ALS, the kind he seems to have, typically moves faster, takes more at a time. His path will be difficult.

Mr. Bélanger is a month older than I am, right in the typical age range for this illness. He is at the peak of his career, also typical for people who get ALS. He is an active, outgoing man; a man with a family, children, grandchildren. He will need all of his strength, all of his family's strength, all of his community's strength as he deals with his diagnosis, and his disease. As an MP with 20 years in the house, he is entitled to, and will receive plenty of financial support, plenty of physical support. It's the emotional support which will be most important, for him, for his family, for his community.

There are only two pieces of advice I would give to Mauril Bélanger. The first would be a repeat of the advice my neurologist gave to me; if there is anything you want to do, do it sooner rather than later.

The second piece would be my own, albeit derived from something my brother Peter once said; you're going to live until you die, make sure that you live before you die. Take every opportunity to tell someone you love them. Grasp every chance you have to live your life. Find the joy, humour and happiness where ever you can. Live, with ALS.

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