It’s been quite a hiatus from writing. With 3 races in 6 weeks, the launch of our foundation, house hunting, and trips to Boston & DC, I guess it’s no wonder that I haven’t had the time or focus.
But it’s more than that. We had such incredible highs from the triathlon, reconnecting with our ALS TDI family at the gala, and seeing 60+ of our closest friends who came in to celebrate the Team Drea Foundation & run City of Oaks……and then the election.
I’ll spare you my political views, except to say that I was disgusted, deeply saddened, and that it sent me spiraling. I tried to write, but I had zero energy and even less patience. So I put it away, distracting myself with other projects, wondering if I would ever be inspired to come back.
Then I read President Obama’s interview in The New Yorker. Really read it, all 23-pages – absorbing his disbelief, teeth-clenching-for-the-sake-of-class, and above all, his view of the long game.
In discussing the election with his daughters, he reminded them that when you’re faced with a setback (in this case, flare-ups of racial bigotry):
“You don’t get into a fetal position about it. You don’t start worrying about apocalypse. You say, O.K., where are the places where I can push to keep it moving forward.”
But wait, Mr. President…you mean even if the world as you know it is turned upside down in a single day? Even if everything you’ve worked so hard to achieve for so many years goes up in smoke? Even if you’re reeling from the shock and filled with fear and despair for the future?
Huh. Turns out I know a little about how to handle that.
So now I’d like to introduce someone else who knows how to play the long game.
Eddy Lefrançois from Dubreuilville, ON, Canada has been living with ALS for 25 years. Yep, that’s right. We met via Twitter when he commented that he liked my tattoo and also had one on his forearm.
“What is it?” I asked.
“My expiration date,” he replied. April 1997. Five years after the date he was diagnosed — the date he was expected to be dead by, the way all of us with ALS are told to expect to die in 2-5 years.
And yet, here he is.
Eddy is an ALS Canada Ambassador and works to spread awareness about the disease. This year, his goal is to raise $25,000 for his 25th year surviving ALS. You can support his campaign here.
He’s accomplished many things on his bucket list: an NHL Stanley Cup Final game, traveling extensively (Italy, NYC, Las Vegas, the Bahamas, Mexico…not easy with ALS), and a bunch of other things.
As he says on his website, “I can do anything, I just do it in a different way… that’s all.”
In 1990 at the age of 21, Eddy began experiencing weakness in his left hand. He was diagnosed a month shy of his 23rd birthday. He SPEAKS, EATS, and BREATHES on his own, which is as head-shakingly unbelievable to me as the fact that he is alive at all.
Of course, I had to ask him what the secret is to gaining admission into that most exclusive of clubs – the 10% of people with ALS who live longer than 10 years.
“Drinking Kool-Aid every day,” he answered, “Orange and cherry :).” He was only half joking. Weight loss is the enemy for people with ALS – it’s hard to take in enough nutrition if you can’t feed yourself or rely on a feeding tube. There is also some evidence that heavier people tend to have slower progression. So he pads his healthy diet with chips, cookies, coke, and calorie supplements like Ensure Plus Calories and Resource 2.0.[For anyone wondering how I’m doing in this logic-and-American-culture-defying department, I guess I’m winning. I have gained 20+ lbs in 2 years, which is good except that none of my clothes fit :P]
“To be serious, I think it’s just luck on my side,” he continued. “Prior to my diagnosis, I was active in sports and in good physical condition. I would like to think that helped, but look at Lou Gehrig…I would say my positive thinking helped…I just love life and am living my life to be happy the best way I know how.”
His positive outlook is obvious, but I wondered if it was challenging/awkward/confusing to maintain that optimism when he’s witnessed so many friends and people with ALS pass away. For me, it feels like waiting for the other shoe to drop and my health to decline.
“I did feel that way. Did. Since April 14, 1997 it changed — as you know, that is my ‘Expiry Date’ I figured I was better off enjoying whatever life I had left and smile rather than be ticked off at my fate.
The death of friends with ALS (or any ALS death for that matter) are very difficult on me, I have to tell myself ‘Let’s Roll’ and tomorrow is a brand new day. For me, ‘Let’s Roll’ means not to quit no matter what happens, because someone somewhere out there is having a worse day.”
“Let’s Roll” is Eddy’s life motto. It was inspired by Todd Beamer, a passenger on Flight 93 on 9/11. He was on the phone describing the situation and said some of the passengers were going to jump the hijackers. His last audible words were “Are you guys ready? Let’s roll.”
Which is essentially what I think President Obama getting at.