My dad, Bert, a few months after diagnosis. I can see the disease in how he holds his mouth, and the thinness of his arms.
It’s been a weird couple of weeks for me, since the ice bucket challenge really took off, because I’m an ALS survivor. If you know anything about this disease, you know that there is no cure. I’m using the term survivor because my dad died of amyotrophic lateral sclerosis 10 years ago. The only survivors of this disease are the family members and friends who offer care, love and support as best they can, advocate for their loved ones with doctors, nurses, bureaucrats and support workers, and watch and weep and wait for the inevitable, horrible death. Most people with ALS die within 2-5 years of their diagnosis, when they are no longer able to breathe or swallow.
The thing about ALS is that it’s a “hard sell” in the charity fundraising market. There are no inspiring survivors – there is no cure. There’s no multi-million dollar industry around it – not a pink ribbon or national school run day anywhere. Those who suffer with it often can’t speak, walk, feed or dress themselves – difficult conditions if you’re trying to advocate. And those conditions also mean that most people, quite naturally, don’t want to see what ALS looks like, as its victims fade away to a shadow of their former selves. 2-3 people die of ALS in Canada every day, according to ALS Canada, compared to much higher numbers for other diseases.
So, it’s a little strange, all of a sudden, to have a freaking hashtag about ALS, and to have people all over the world dumping ice on their heads and challenging others to do the same, to raise money for this disease a lot of people have never heard of. I’ve been trying to dig into why I’m ambivalent about it. I love the amount of money that’s going to ALS charities, and heaven knows we all needed a feel-good story this month, but I wish I was convinced that it meant people were actually learning, and talking, about ALS. A friend’s 9 year old daughter posted her own video after her dad did his, and challenged a few friends to do their own. It was adorable, but it also frustrated me, because the cynical side of me knows that those kids aren’t making donations, or hearing anything about ALS. It just becomes dumping water on our heads, which makes for entertaining video, but doesn’t help find a cause or cure for a disease we’ve been aware of for more than 100 years.
I read a Slate article that suggested that people being more aware of ALS does “precious little good to anybody”, and I would respectfully submit that that’s crap. If this challenge means that more people have an awareness of this disease, and fewer people living with it are laughed at as they try to manoeuvre food to their mouth in food courts or restaurants (as happened to my dad), and friends and family members might not have to do quite as much painful explanation or advocacy, I would be thrilled. Awareness does make a difference, and there is almost no way that I can explain the relief that would come when I told people what my dad was living with, and someone had a sense of what that meant. Someone understood that we were watching my brilliant,frustrating,athletic, impatient,Drama and English teacher dad lose his ability to bicycle, rant, tend his grapes, dance, share his opinions, eat the good food that he so loved, hold my kids, swim, sing…..it was a gift when someone understood that.
So, please, if you’re taking part in the challenge, take a minute to find out what the first part of that hashtag is all about. If you choose to make a donation, you might want to choose one (like ALS Canada) with a mandate to research, but also to provide care and increase awareness. It’ll help your donation keep making a difference when ALS, inevitably, gets bumped out of the social media spotlight.
Links to check out:
Bo Stern’s blog.: A family member’s perspective on living with ALS.
ALS Canada
Let the sparks fly.
Confessions of a sparkplug 