Thanks For The Icy Buckets

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?

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10 thoughts on “Thanks For The Icy Buckets

  1. Pingback: Thanks For The Icy Buckets | Ellie's Random Blog (<3)

  2. Kate Beatty says:

    Beautiful thoughts!! So glad that ALS has had a wonderful spotlight and awareness this week although it affects “only” 30k Americans every day. Those 30k Americans matter and I hope and pray that this Ice Bucket Challenge will result in awareness and hope and successful research into finding a cure!!

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  3. I have MS too & my thoughts on seeing the ALS ice bucket challenge videos were very similar to yours. You said it better. Only thing I would add is for those of us with MS, for whom heat often makes symptoms worse, if the ice bucket challenge might actually have helped at the time had someone actually challenged me. They didn’t because I’m not a celebrity so I just donated because Stephen Hawking has always been a hero of mine. But I was in relapse during that part of summer & wondered if maybe the cold water would’ve helped my neurons make their connections so I could balance better & fumble &; stumble less until the steroids kicked in.

    Or maybe not. But I admire the grace & dignity with which you hold yourself& your constant sense of humor- no matter the MS! & I know just what it costs to maintain what is at times an illusion of functionality & “I’m fine” when your body is betraying you.

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  4. Aino S. says:

    I have an invisible illness, and I struggle daily with chronic pain, but also people’s opinions on my body. I, too, feel very alone, especially with my able-bodied friends, who haven’t seen me when I’m very sick, and just don’t get it.

    So things like this are making the invisible visible for a moment.

    And that is so hugely important- to have that experience of being seen, acknowledged. I have one friend who understands the struggle that a body can be, and talking to her about my experiences, and feeling the recognition of emotion and experience in her, is very powerful.

    The experience of being seen has made me cry for hours. I am not alone.

    Thank you for your writing, it is very eloquent.

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  5. Dear Rachel,

    Whenever I see you comment on yourself that you are different, in a way that makes you abnormal makes me cry because yes you are different, but not in a way that puts you below others. Every post you put, every answer you give to people shines with such love and generosity that is hard to find in most people. You lead with kindness and spirit and even when things are at their hardest you still have hope and determination -it’s something I admire greatly.

    I have aspergers and dyspraxia, mild cerebal palsy, stress related seizures and a bunch of mental illnesses that used to make me feel like I was shoved in a box labeled ‘freak’. I could never socialize or act like everyone else and it used to make me wish that I was normal. But now, years later, I look at all the things I’ve done with my life and what I do today and I realize that being ‘normal’ doesn’t mean being alive -what good is someone’s approval of you if you’re not being true to yourself and living your dreams?

    I know I’m just a fan, but it’s been your positivity and spirit that has helped me change my attitude. Once I was a girl who just wanted to be like everyone else but now I’m a girl who is going to live every day to the fullest and go for my dreams despite what illnesses and conditions I have. If I fall down or I’m in pain one day then that’s fine, I’ll just try again the next day. If I struggle to communicate verbally with people and they struggle to understand me then that’s fine, I don’t need public approval to be okay.

    You have MS, but you’re also Rachel. Rachel Miner is beautiful and funny, talented and kind, loving and smiley. You care and that means everything.

    Stay strong if you ever have bad days and know that we always love you and you’re never alone.

    Love from Lucy xxx

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