The Ice Bucket Challenge Redux (Day 156)

(Photo credit: Mission Accomplished: ALS Ice Bucket Challenge by Anthony Quintano on flickr.com. https://creativecommons.org/licenses/by-sa/2.0/legalcode.)

I felt the heat of embarrassment rising up in me when my friend began to film me, last summer, when I set about doing the now famous ALS Ice Bucket Challenge.

Yes. I said embarrassment. I feel ashamed that I felt that but what’s a journal if not a place to reveal what’s really going on inside of me. Even if it doesn’t make me look particularly attractive.

I loved the idea of the challenge and was thrilled to be a part of spreading the word about supporting research for this horribly debilitating disease, but . . . cameras unnerve me. I’d much rather be behind one than in front of one.

Before posting my challenge, I watched my “performance,” and considered, briefly, deleting it and starting all over again. I didn’t like the way I looked. I didn’t like the way I sounded. I didn’t like the way I phrased my plea. But, I knew that it was likely I’d respond the same way if I filmed myself again. And I was doing it with a friend who seemed fine with what we’d done; I wasn’t going to admit to my childishness regarding showing myself in action, on tape, for all of my FB world to see.

A few nights ago, I was sitting on the porch of our yacht club (see my post here that addresses my feeling about yacht clubs), my house on the ocean (as my husband likes to refer to it), when I saw a young man in a highly sophisticated wheelchair, clearly in poor physical shape, being brought outside to sit with friends. I’d noticed this man a few times before when I’d been out on the porch this summer. The last time I’d seen him he was seated with people I know, so I asked somebody who was with me if they knew who he was and about his medical condition.

I’ve known of many people who have died from ALS, mostly parents of friends or friends of friends. Most recently, my mother lost a close friend of hers to the disease. Actually right around the time I did my ice-bucket challenge last year.

I’ve also seen pictures and videos of people in different stages of ALS and understood on some level the physical deterioration that comes with the disease.

Still, being a few feet away from this young man, and learning he was suffering from ALS, hit me with an unexpected force. He was so young (late 20s, early 30s) and had a wife and a baby. I had to do everything in my power not to lose it right then and right there.

It is one thing to know about this disease. It is another to see somebody deep in the throes of it, trying to live his life as normally as he could. It is another to learn that the man I had now noticed three or four times was the one for whom the Ice-Bucket Challenge was initiated: Peter Frates.

I’d seen photos of him last year and to see him now, in much worse shape than a year ago, was devastating. The reality of his situation, and that of so many others with ALS, left me feeling both uplifted, because he was here having a “normal” evening with friends but also ashamed of myself for my vanity, not just during the challenge last year but in general, in regard to my going out every single day.

I’m not a primper; I do not spend inordinate amounts of time nor money trying to make myself look beautiful, but I do care about how I look when I go out and see other people. I fix my hair, sometimes I put on makeup, I dress in clean clothes, which I hope have a touch of style.

When I don’t feel good about how I look, I still go wherever I’m going, but inside I feel embarrassed. I question my eating and exercise habits, get annoyed at my hair’s mind of it’s own, especially in the humidity, and think I should get regular manicures and pedicures despite the fact that I find sitting while somebody fusses over me to be one of the most excruciating of experiences.

Then I see Pete Frates and wonder about what kind of person I am. All of that wasted energy that could be spent enjoying my life, having fun with those I love, doing things that make a difference, that make our world a better place.

At home, the other night, I googled the ice bucket challenge and found that there is a push to make it an annual event, every August. The money earned last summer has done a lot to help those with ALS and those who will contract the disease in the future, but there is a lot more money needed to find a cure, and to continue to do the hard work the ALS Association began years ago and built upon this past year.

I know there are many charities in need of support, and there are those who say that it’s somebody else’s turn, but I’d rather see more people get involved and learn about where they can contribute than cut off one organization’s lifeline in order to support another.

August is only a few days away. I will do the Ice-Bucket Challenge again and will donate to the ALS Association. I hope you will join me. In the name of Peter Frates’ family and all of the other families struggling to support those they love stricken by ALS.

Sara

Sara

I write about daily life, arts & culture, food, books, nature, animals, parenting, relationships, self-discovery, & more.

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