Ice buckets and Adrian Dessi

Adrian Dessi, 2013.

Adrian Dessi, 2013.

Everyone seems to be doing the ALS ice bucket challenge. George W. Bush. Dr. Dre. Tiger Woods. Justin Bieber. Demi Lovato. My nephew. On and on and on and on. And it’s been great—$31.5 million has been raised for the ALS Association, a staggering amount for a disease that seems to often go overlooked.

And yet, I must admit, there’s a part of me that feels, um, awkward about it. And there’s a reason why, even though the wife and I have made donations after being challenged, neither of us have dumped the ice water on our heads.

Actually, for me, two reasons:

1. I’m a pussy.

2. I … don’t know. This is hard to explain. But I’ll try. Last year, I drove up to Putnam County, N.Y. to visit with the father of Mark and Chris Dessi, my boyhood friends from Mahopac. Adrian Dessi is fighting ALS, and he agreed to sit across from me and answer questions for a Quaz. We sat for, oh, two hours or so, and it was amazing, wonderful, terrible, heartbreaking. Mr. Dessi is a strong and prideful man, one who has faced ALS with tremendous courage and strength. Yet, truth be told, ALS is destroying him. He is in a wheelchair. He needs help breathing and eating. He doesn’t move his limbs. He has a full-time aide. It is the worst of the worst of the worst. I’ve seen people decay from Alzheimer’s, and while it absolutely sucks, there’s some solace in lacking awareness toward the end. With ALS, you are 100 percent aware of the reality; you are trapped in a torture chamber, and the only escape (the only escape) is death. Here’s a link to the Q&A. I assure you, Adrian Dessi made it a worthwhile read.

Anyhow, when I see people laughing and chuckling and shivering beneath a suddenly empty bucket, a part of me can’t help but think, “What the fuck does this have to do with ALS?” And I know—I really, really know—that, logically, my thinking blows. If it’s raising funds, who gives a shit if there’s a connection? I get it. I truly do. But … still. It sorta kinda sorta kinda reminds me of the early 1990s, when tons of folks (and their mothers) wore X baseball caps for Malcolm X. Initially, the X hats were a statement. Support for Malcolm X’s message; for empowered blackness; for standing up for a cause. Before long, however, every half-wit celebrity wanna-be was sporting an X cap, until it lost all of its initial meaning. Why is it, in 2014, nobody wears X hats? Is it because Malcolm X’s teachings no longer hold weight? No. It’s because movements last, fads fade.

It feels a bit like that now, with ALS. Sooner than later, every celebrity who hasn’t dumped water on his head (Paging: Emmanuel Lewis. Mr. Emmanuel Lewis …) will dump water on his head. Everyone with an Instagram account will move on to the next 15-second clip. The Twitter universe will go crazy over photo of Miley Cyrus eating cat excrement. And the ALS ice bucket challenge will feel very 2014.

Meanwhile, men and women like Adrian Dessi will remain in their chairs.

And a bucket of water won’t mean shit.

 

4 thoughts on “Ice buckets and Adrian Dessi”

  1. well said Jeff.
    just donating the $ isn’t enough (if all of them are indeed giving money), all those people with the ice buckets have to make it about THEM.
    and then they have to post the video of THEM doing it.
    it’s not about the victims at all.

    John Wooden said “the true test of a man’s character is what he does when no one is watching.”
    many of the ice bucket people could never even fathom the idea of doing something UNLESS someone else would see it.
    and just to be safe, they’ll make SURE someone sees it.

  2. Jeff, though you are likely right it doesn’t matter -as long as it is helping to raise money. We should ask the folks at ALS.org if they care as the money is pouring in at levels they likely couldn’t have imagined.

    And next year, when they are back to normal giving levels and look at their year over year comparisons, I am figuring that though they see a dramatic drop they wouldn’t change anything.

    If one dollar raised by someone who just wanted to see themselves on the internet ends out being a dollar that gives even a minor breakthrough, or extra relief and/or care to one person with ALS, will it have been worth it?

    Keep up the blog, look forward to it every day

  3. Totally with you on this. Got challenged and chose donation as well. A friend of mine’s dad died from this disease. It dragged on for years and it was awful to watch. Something about this ice bucket thing in relation to the real disease makes me cringe.

  4. you kind of just said it, jeff. it’s raising funds and awareness. not every single person is going to purposefully find a reason to be morose about it. that’s just not in everyone’s DNA. i did, however, watch a video of a young man whose mother and grandmother have/had ALS, and he was recently diagnosed. his six minute video starts with him provocatively washing his car in ALS short-shorts, and turns into a heartbreaking conversation. there is awareness and money here. EVERYTHING fades. that can’t be a reason to condemn, for lack of a better term.

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