I remember September 21, 2011 remarkably well. I remember sitting in my dorm room, frantically refreshing Twitter to see whether or not, by some miracle, justice would be served, and a man would go home to his family.
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"How can you not remember," my sister asked, incredulously. The fact that my memories before age 13 seemed few and far between has become a running joke in my family, as we often reflect on our spectacular annual road trips across North America that I have little to no recollection of. But the fact that I had no memory of ever meeting my Uncle Mike seemed truly shocking to her. "That's really sad, actually. I always thought you and him would get along the best. You guys have the same sense of humor; you'd think he was hilarious."
A year before this conversation, I had won a free trip anywhere in North America or the Caribbean from my previous employer. At the last minute, I decided to skip the potential beach vacation and instead redeem it for a ticket to Vancouver, where my dad was headed to visit Mike and his family.
In the days leading up to it, my mom and sister had both pulled me aside to somehow prepare me for the trip. I was worried it would be awkward to meet my Uncle for the first time, when technically we had met before, and the current circumstances weren't going to help make for a smooth transition. My sister would share her memories of the last time our families visited, telling me what Uncle Mike was like. My mom, on the other hand, tried to explain in advance what Mike would look like and the struggles he would be having, to try to lesson the shock. Mostly, she reminded me that I had to be there for my dad after our visit, and worried about how he would cope with what we were going to see. Although their pep talks were a comfort, they also added a knot of nerves to my stomach as my imagination went wild thinking of how traumatic this trip could be.
Uncle Mike was diagnosed in 2011 with Amyotrophic lateral sclerosis (ALS), otherwise known as Lou Gehrig's disease. I don't remember who told me, or when, but I vividly remember many conversations in the days to follow. Above all else, I remember the blinding confusion as I tried to sort through the information I was given by family members that were equally as lost. I had no idea who Lou was, and even less of an idea what disease brought his name into my life. Over the years, as we've learned more and more about the disease, we've also learned more and more about what its like to be affected by something most people don't know exists.
In Layman's terms, ALS is a progressive disease that attacks voluntary muscles (muscles we consciously control), such as your arms and legs. ALS is non-discriminatory. Although some populations have higher recorded instances of ALS, any age, gender, or race can be diagnosed. There is no known cause, no risk factors, and it is not hereditary. It is, in short, a mystery. "Progressive" means that ALS is a derailed train, and with no cure, it just keeps going. It can begin in a lot of different ways; for Mike he noticed a slight twitch in his hand. ALS doesn't take its time. Most people with ALS only live 3-5 years before they lose the ability to breathe, and the disease becomes fatal. Just three years after his diagnosis, healthy, active Mike is almost completely paralyzed, has lost the ability to speak, and relies 100 percent on the constant physical and mental support of his wife and family.
When discussing the most imminent threats facing the impoverished populations of the world, Michael Harrington noted, "that the poor are invisible is one of the most important things about them. They are not simply neglected and forgotten...What is much worse, they are not seen." A similar sentiment can be made about thousands of diseases around the world that stalk from the shadows, going undiagnosed and untreated, and leave those affected stranded and without sufficient support.
Over the past few weeks, my family and I have watched happily as a social media phenomenon, of all things, brought ALS out of the shadows and into the vocabulary of millions. I've let my jaw drop as I read the donation updates - $1 million...$15 million...$50 million and rising?! It's hard to explain to people what something like this means to families of people living with ALS. It gives us hope that the resources needed to find a cure can be given to the researchers that need them.
It makes us cautiously optimistic that maybe, just maybe, they could even find it in time for our loved ones. But it isn't just about the money. ALS is torture for everyone involved. Those living with the disease are robbed of the ability to pass quickly and painlessly, and those on the sidelines have to watch helplessly as their husbands and wives, sisters and brothers, mothers and fathers, are slowly taken from them. We are there when they wonder why their hand is twitching. We are there when they can no longer walk for more than a few minutes at a time. We watch as they move to a wheelchair permanently, when they can't hug their family anymore, and when the life of the party can no longer verbalize their jokes. All of this pain is relived each time we're confronted with a "what's that," and have to explain to someone what plagues our loved one. The Ice Bucket Challenge not only gives us hope for a cure, but makes each day a bit easier, as we can watch each video, feeling like we're watching a personal dedication that welcomes people like Mike into millions of homes. It reminds us that we aren't as alone as ALS makes us think we are.
As I prepared for my trip two years ago, my mom reminded me that if it started to feel like too much, I didn't have to go. We hadn't paid for my flight, so it wouldn't matter if I decided to cancel. Except I couldn't cancel, not really. If I had learned one thing in my research of ALS, it was that you never know. You never know how it will start, how quickly it will progress, or when it will finally take you. Mike's health, in the weeks leading up to our visit, had taken a quick decline. We didn't know what stage of the illness he was at anymore, or what abilities he still had. I didn't know if this would be my only chance to meet my uncle, and I wasn't going to miss the opportunity just because I was scared.
I sent my mom an email after our visit.
"I'm glad I came. Dad and I both said how glad we are that he has Nadine. He can't really talk anymore, but every time he mumbled she knew exactly what he was saying, and delivered each of his punch lines just as well as he would have. At first it was scary to see him like that, but even though I don't remember what he was like before, I can tell he's still the same as he always was."
This post is dedicated to Uncle Mike, and all those living with ALS. Your courage, dignity, and unwavering sense of humour is an inspiration. To read more about Mike and his life with ALS, visit