Do me a favour, would you? Settle in somewhere comfortable, and set an alarm for, oh, five minutes or so. Now, for that five minutes, try not to move. Not your arms, legs, head, mouth, nothing. Not at all, only your eyes.
Phone buzzing? Can’t answer it. Itch? Can’t scratch it. Mosquito landing and feasting on your arm? Nope, you can’t move that either. Muscle spasm? Can’t stretch out the limb. Too cold? Too bad.
I’ll wait here.
Bet that five minutes felt a lot longer. Did you make it through? Well, that’s the road I’m going down, where eventually I won’t be able to do anything for myself, where nothing will be working but respiratory muscles (and they’ll eventually go to) and eyes.
Of course, by then, I expect the voices in my head to keep me entertained and distracted, they must be good for something after all these years…
That five minutes is just a little taste of an ALS fundraiser underway right now.
What Would You Give?, started by the incredible Sarah Coglianese will raise money for the ALS Therapy Development Institute, an American research organization founded solely to find treatments and a cure for ALS and whose slogan is “ALS is not an incurable disease, it is an underfunded one”. Folks form teams and decide what they will give up for the day, maybe speech, or the use of arms, or spending the day in a wheelchair.
(I should never have given the link for Sarah’s blog. If you like my blog you will LOVE hers, and never ever come back. She’s warm, witty, open, and inspirational-a rockstar.)
Now, for my Canadian friends, I’m not asking you to donate to ALS TDI, you have given quite generously to the various provincial ALS societies, and I’ve written previously about where that money goes.
But it’s interesting to put yourself in someone else’s shoes, even for a short time. I believe it builds empathy and understanding. And anything that raises awareness might lead to more funding, which is the key to a cure.
Speaking of Canadian fundraising: For this year’s Walk for ALS, there are groups registered in St. John’s, Halifax, Prince George and Victoria under the “Staying the Course with Liz” banner–truly coast-to-coast, sea-to-sea!
This is humbling, and rewarding, in so many ways. The walks have been walked out east, and in Prince George, but here in Victoria we roll out on Sunday September 17. It’s much more fun than you might imagine, and I’d love to see you there!
Now, go get that timer. I’ll wait.