I speak to many people, famous and not, about my experiences living with ALS, to raise public awareness

The Inspirational Robert Michaud

If you were to ask me to describe myself, I would answer that I am the father of four wonderful kids, Philippe, Marie-Pier, Ann-Liese and Claudine, the husband of a lovely redhead from Saint-Ignace-de-Stanbridge, named Pierrette, the uncle of Jonathan  Duhamel (2010 WSOP world poker champion), and, soon, the grandfather of a baby boy, eagerly awaited in December. I am proud of my career at IBM, my service as town counsellor in Sainte-Sabine, and my involvement as a volunteer in local minor hockey and female hockey.

What’s more, I am living with Bulbar ALS. I was diagnosed last year, on September 22, the day after my 53rd birthday. After the initial shock bowled me over, I decided not to give up, but to take full advantage of the time I had left by getting involved in ALS Society activities, fighting to improve conditions for people living with the disease, living out my dreams with my family and loved ones, and pursuing my passions, even with this illness.

One of my passions is hockey. In fact, I spent the past 22 years as a coach, director and president of a minor hockey organization in Farnham and as president of the Farnham Novice Atom hockey tournament. At a certain point I started concentrating on female hockey, as two of my girls wanted to play. I was a coach and director of female hockey in the Eastern Townships, and I put together the first-ever all-female provincial championships. My girls still play, the youngest for the University of Montreal team, the Carabins.

For the past two years, I’ve pursued my second passion, making hand-crafted wooden pens. As an accountant, I’ve always had a weakness for nice pens. I was admiring a variety of fine pens during a visit to the ‘Foire du bois’ in Saint-Hyacinthe, when I stopped in front of one booth, thinking I recognized the artisan. It wasn’t until I read his business card, which read “Serge Guérin, of Iberville,” that I clued in. The man was my favourite hockey coach, whom I had not seen in 33 years.

We started to talk, and I found out he had not one but four forms of cancer, which he was fighting the same way he used to lead us to victory on the ice. I was quite moved by our meeting, and contacted his wife to see if we should organize a team supper. She thought he would enjoy that. I tracked down 17 of the 19 players from our old team, and we had that team supper, 33 years later. Serge has since passed away, but his passion for wooden pens still lives on, in me.

Ever since my diagnosis, I’ve been lucky. My voice has gotten noticeably weaker, but I still have the use of my legs, arms and hands. What’s more, my wife and kids and I have decided to live as if each day were our last. We went on a Caribbean cruise, and then another cruise to Alaska. Sure, we spent more time in our bathing suits in the Caribbean, but we managed to swim in Alaska, too. We were in the hot tub on the ship, with an incredible view of mountains and glaciers all around. It was totally sublime.

We also travelled to see the Grand Canyon. We flew on a helicopter to the bottom of the canyon, where we took a boat down the Colorado river, surrounded by the magnificent cliffs of the Grand Canyon.

And last April, Pierrette and I took the kids to see Céline Dion in Las Vegas. We even met with Céline and René before the show. It turns out that they are aware of ALS, as Mr. Angelil’s accountant, Mr. Delambre, had succumbed to the disease.  I took advantage of the meeting to present the stars with two of my wooden pens: Rene’s in ebony, and Celine’s in box elder burl.

I speak to many people, famous and not, about my experiences living with ALS, to raise public awareness as much as I can. I’ve taken the stage at several ALS Society of Quebec events, such as the Vincent Damphousse poker tournament and the golf tournament. Why? When you know that cancer affects one out of every three people, compared to seven in 100,000 for ALS, you can understand where most of the research money gets allocated. That’s why we have to work harder, and why each fundraiser is so important, so that we can find a cure for this terrible disease someday.

The fantastic and devoted people at ALS Quebec are not only supportive caregivers for patients and their families, but also work hard to raise money for equipment, activities and research, which is vital in the case of this disease. I support them as much as I can in return, by going all out for fundraising campaigns like the ‘Ride for ALS.’ My team of nine cyclists, called “Les Pédaleux de Bob Michaud,” raised more than three times the minimum amount. We worked really hard, but it was a lot of fun. At our team supper this October, we were even considering the idea of having two teams next year.

After the event, the Executive Director, Claudine Cook, asked me: “How on earth did you and your cycling team manage to raise $33,500?”  I told her, tongue in cheek, that it was just a question of wheeling them in: I knew all the players and, as Michel Bergeron would say, I gave them realistic objectives, like finishing in front of all the other teams!

Actually, I started by going to see everyone who had benefited financially from me during my life (my banks, the caisse populaire). I even paid a visit to the director of my local funeral parlour, and said to him (in my best Godfatherstyle voice): “You’re going to make money off of me, so wouldn’t you like to contribute part of that sum to the Ride for ALS?”

Then, I called upon all the donors who used to contribute when I worked for the Farnham Novice Atom hockey tournament, where incidentally I had the chance to meet Jacques Demers, Dany Dubé, Guy Lafleur and Réjean Houle, who served as honorary president of the tournament.

And now, I have three new goals in mind. I’d like to participate in media interviews to let more people know about ALS. I’m trying to develop an agreement with Apple to provide significant rebates for ALS patients on iPads with “Speak It!,” the text-to-speech application which helps us communicate much more easily, and develop similar subsidies with other corporations. And I have a lot of pens to make before Christmas!

As I tell my friends, this disease has no idea who it has taken on. I will give it a hell of a ride: be ready ALS.

Robert Michaud (passed away February 19, 2013 at the age of 55 years old)