An open letter of thanks to the ice-bucketed ones and my take for those who question the purpose of the gesture.
I don’t have ALS I have MS, a different acronym, a different set of letters to describe my obstinate body, and yet still, every time I see a silly video of someone dumping icy water on their head, I first smile and then cry–that cathartic kind of cry born from not really knowing that you were sad until the moment happiness sneaks up on you.
Firstly, that is a ridiculous thing to admit to. Secondly, I think that I respond this way because, though I don’t like to talk about it, I so often feel really different and really stupid. Because I go about my days around all of these “normal people” so I attempt to behave “normally” too, but much of the time all I am focussed on is trying not to fall or drop something, or break something as I am falling or dropping something. Because I, like most of us, hate sympathy, but find it hard to always come up with ways to make others laugh at the stumbles or get past the canes, walkers, wheels and speech synthesizers (that’s the cool way that Stephen Hawking speaks).
Now again, I don’t have ALS, but I do feel a kind of kinship with others in the failing motoneuron family. Added to that is the fact that I, like so many, have looked up to Stephen Hawking for my whole life and more recently have found that his being such a valuable participant in this world, even though he too can’t nimbly or gracefully maneuver a body, is a constant source of encouragement to keep fighting to accomplish something worthwhile.
So to the point, these short silly videos– not of crying or pleading for those “sad, sickly, victims of this horrible disease”, but of shared laughter, fun, silliness, perhaps a bit of uncomfortable chilliness and a “hey, I care and you should too” message– say something profoundly meaningful, they say that all these friends, colleagues, strangers, people we respect and look up to care about this thing too– this thing which we might mistakenly think no one else sees, this seemingly lonely struggle– and not only that, but all these people aren’t running away from, looking down on, criticizing, cringing or crying about it, they are in fact willing to look a little silly too just to show that they care.
So there it is, and as uncomfortable as voicing the personal bits are, I too am willing to deal with momentary shivers to express some much deserved gratitude to all those whose teeth chattered for the cause, cause I’m thinking that perhaps I am not alone in experiencing these feelings. Beyond all of that, isn’t it simply a beautiful thing to see a silly game, with a noble purpose participated in by so many? Isn’t it in brief moments like these that we see what makes humanity eternally lovable?