Thursday, August 28, 2014

The ALS Challenge and disease awareness

I spend a lot of time on Facebook (I wish this wasn't true, but it IS true,  so I'm just going to own it. Lookit me, owning stuff.  I must be growing. Or devolving.  It's hard to know?).  As such, I've seen (or, more accurately, scrolled past) lots of ice-bucket challenges.  I wasn't keen to jump on the bandwagon, because watching other people pour ice on their heads is about as much fun as watching other people's videos of their toddlers eating rocks.  Which is not to say, of course, that I haven't taken lots of videos of MY children eating rocks.  When it's your own children, or people you know and love, it's much different. So when some dear friends challenged us to dump buckets of ice-cold water on our heads, we  jumped on that icy bandwagon as a family and spent a giggly Sunday afternoon editing our video while our children jumped around shouting how it was going to go VIRAL FOR SURE!

(I'd upload the video for your enjoyment, but it's on my husband's phone, I'm too lazy to figure out how to get it from Facebook, and besides, do you REALLY want to watch it?  Yeah, I thought not.)

I've also read a lot about how ALSA.org doesn't really get the money to people who need it, that it's not the best organization to donate to, how we shouldn't be using perfectly good drinking water to make a point (thank you, Matt Damon), how giving money does nothing to really help, and how it's all just a big farce.

Honestly?  I'm okay with all of that.

Because HOLY CRAP there are lots of people out there who had never heard of ALS.  Despite Steven  Hawking and his appearances on The Big Bang Theory, despite Tuesdays with Morrie, despite Lou Gehrig, people don't know much about ALS.

And sometimes it's hard to be battling with something that NOBODY KNOWS ANYTHING ABOUT.

I interned at a hospital as a grad student, and we had an ALS education clinic once a week.  Folks with varying degrees of the disease came to consult with PTs, OTs, and STs to get advice on how to live with ALS.  I got thrown into it by my supervisor, and I'll confess I had no idea what to say or how to help any of these people.   One person already had an augmentative communication board in place, so I wasn't much help there, and another person had lost most of her speech but was able to use a rag to move her tongue around to communicate.  It wasn't pretty, but it was effective, far more effective than anything I would have come up with for her.  I learned more from them than they learned from me, that's for sure, and I wonder in retrospect if the point of the whole clinic was not really to hang out with professionals who can help with a disease (because let's face it, we weren't much help), but rather to hang out with other people who had the same challenges. 

There is something of a huge emotional release when you are around a group of people who don't need anything explained about your disease, who aren't making assumptions about your disease, who aren't trying to figure out what to say about your disease, and who aren't trying to tell you how to best manage your disease.  It's nice when people are just there, sharing the same space, understanding.  And it's also powerful to know that your challenges matter to other people, even if it is only for the 10 seconds before the ice water shoves every other coherent thought right out of that freezing skull.

So if you are really concerned that ALSA is not doing its job, or you want to make a point about clean water, or if you have made your entire living off of your fake boobs and yet are paradoxically obsessed with harmful medical research (thank you, Pamela Anderson), knock yourself out and put up your videos and make your voice heard.  Because it's all good stuff.  Raising awareness isn't only about the money.  It's also about making a space to share.


1 comment:

Nichole said...

Thank you! Thank you for saying this! Yes, it's silly. Yes, it's obnoxious. But it is WORKING. People are learning, and sharing. What a wonderful accomplishment for the ALS community. I also have PKD, and I have never met another person with it outside of a PKD Walk. It's hard to have a diagnosis that requires so much explanation all.the.time.