After living over 26, yes you heard that right, 26 years with ALS, Eddy passed away yesterday from ALS after having complications with pneumonia.
Eddy was diagnosed at 21 years old. He was a formidable figure in the ALS world, tirelessly advocating for people like me. He was an ALS Canada Ambassador and an inspiration.
I first heard of Eddy upon my own diagnosis. My neurologist told me that he knew someone living with ALS for 19 years, I suppose to instill hope, however, that thought terrified me. How could anyone possibly want to live with this horribleness for that long?
And then I met Eddy.
I was fortunate to meet Eddy in person at the 2016 ALS Research Forum. Admittedly starstruck, I whispered to Travis, "Look that's Eddy!". You see to me, he was a superhero. Through social media, the ALS community and his own personal "Let's Roll" website, I knew of Eddy. Quite frankly, you could not be a part of the ALS community and not know Eddy. Gathering the courage to introduce myself, I expressed my thanks for all he does and confessed that he was a celebrity to me. Eddy said he felt the same way about me, what that did for my ego! Friendship ensued and we stayed in touch. He made me feel special. That was who he was. Eddy has tons of friends, those he has met in person and those he has not. He made everyone feel like they had a special relationship with him. With his cheeky sense of humour and light up a room smile, you could not possibly know Eddy and not be enamoured with him. Who of us could do the same while being paralyzed and unable to speak?
It takes more than a person. It takes a superhero.
Eddy never gave up on advocacy, 26 years of it! I can tell you that after 5 years of it I am exhausted and almost every day I feel like giving up. Not Eddy, he lifted me up, not just through social media but by personal texts and emails, and like I said, I'm not the only one. He gave us personal encouragement which translated to comfort, strength and perseverance.
I am proud to have Eddy as my partner on our MP letter-writing campaign. It began through a series of texts where we expressed our frustration at the lack of government funding. We thought, "how can people not be outraged" and "why doesn't our government care?". Eddy & I wanted to do something to hold our politicians accountable to their unanimous approval and passing of Motion-105, not just moan about it (be a doer not a talker as my father always says). Through collaboration (it takes a village), we were stoked when the number of emails sent exceeded 1000. Of course, immediately Eddy set the next goal at 1500. Let's help him reach, nay, surpass it. We have just under a week left before we close the campaign to ask our MP's to follow through on Motion-105 and put Capture-ALS in the next Federal Budget.
Please share the following link with your community:
Email your Member of Parliament Help Create a Future without ALS
Special hugs and condolences to your family Eddy. Their dedication to not just supporting you, but to all of us fighting ALS goes beyond what words can express.
I truly don't know how to continue the fight without you leading the way. I don't know if I can do this. However, in order to honour you, make you proud, and do my best in some tiny way to continue your legacy, I have to at least try.
Eddy, I will miss you my friend, you were one of a kind.