26 year old Anthony Carbajal, just recently diagnosed with ALS, pushes the cause well beyond the ice bucket challenge

What tends to get lost in all the fun of the ice bucket challenge is the fact that ALS is a truly horrific disease. As I mentioned a few days ago, in my post about this current fundraising and awareness campaign being waged by the ALS Association, my grandmother suffered from ALS. What I don’t think I mentioned in that post, though, is that she took her own life rather than see the illness through to its conclusion.

For those of you who might be unaware as to how the disease works, death by ALS, which is one of the more prevalent neurodegenerative diseases, is slow and painful. It typically takes years for a person suffering with ALS to die. Day by day, their muscles waste away until they’re no longer able to fill their lungs with air, at which point they suffocate. Early on, a person with the disease might lose the ability to twist open a jar of peanut butter, or turn the ignition of a car. Within a year, that same person may have lost their ability to walk without falling over. Ultimately, if you follow it through to its conclusion, you lose the ability to swallow food. And, after that, you lose the ability to inflate your lungs. That’s not the worst of it, though. The thing that makes it truly hideous, is that your mind stays sharp throughout, even as everything else slowly starts shutting down. Your brain stays active, as the rest of you withers around it. And it’s this fact, I suspect, more than the physical pain, or the thought that she would be a burden to those of us that she left behind, that led my grandmother to take her own life while she still had the strength to do so.

My grandmother, I’m almost certain, suffered from Obsessive Compulsive Disorder (OCD). I, of course, didn’t know what OCD was back then, years before I was diagnosed with it myself. But there were things about my grandmother that I knew were odd, and recognized in myself. We both suffered from irrational worry. We both hoarded items, worried that we may one day need them. We both did things that did’t make sense to those around us. At the time, I remember my parents telling me that her behavior was due to her having lived through the Depression. Years after her death, when I finally figured out what my issue was, though, her behavior started making sense, as did her decision to end her life.

We’ll never know what she was thinking at the time, but my sense is that the thought of being trapped inside her own body, with just her thoughts, and no way to lessen the anxiety by engaging in certain behaviors, was just too much for her. It’s difficult, I know, for people without OCD to understand, but the thought of being unable to do whatever it is that you do in order to keep the all-consuming anxiety at bay, is far worse than death. Let’s say, for instance, that someone had to check the lock on their front door several hundred times a day, for fear that something truly awful might happen if, by some chance, said door wasn’t properly locked. Now, what happens to that person when she can no longer act on that compulsion? What happens when, overcome by panic, you feel the overwhelming need to straighten a number of items on a shelf in front of you, but your arms no longer function? I know it may seem silly to many of you, but the pain is real. And, it’s for that reason that I don’t think there’s anything worse that could happen to a person with OCD than ALS. It truly is a fate worse than death. And I think that was illustrated in my grandmother’s decision to take her life.

Sorry for the tangent, but I felt compelled to share that after watching the following video by 26 year old Anthony Carbajal of California, who was diagnosed with ALS in January. It was one of the most heartbreaking things I’ve seen in a very long time.

That’s what the ALS challenge is all about. It’s not about the Foo Fighters being brilliant or 5o Cent using the platform to settle scores. It’s about real people, like Anthony and my grandmother, and their families. It’s about the frailty of human life, and the ability of motivated, kind-hearted people to come together to offer at least a glimmer of hope.

If you haven’t done so yet, and would like to, you can donate to the ALS Association by clicking here.

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10 Comments

  1. Posted August 21, 2014 at 10:25 pm | Permalink

    GladysFlorian2

  2. Posted August 21, 2014 at 10:27 pm | Permalink

    And that mischievous looking little girl is my grandmother, born Gladys Florian in 1917.

  3. vita
    Posted August 22, 2014 at 12:20 am | Permalink

    There are other videos on-line of him and his mom. I cried my fucking eyes out.

  4. Rats
    Posted August 22, 2014 at 5:59 am | Permalink

    What if having ice water dumped over your head causes ALS.

  5. 77
    Posted August 22, 2014 at 11:24 am | Permalink

    I hate the internet. I saw the video, got all emotional, and then it occurred to me that it could all be fake. I hate that the internet made me doubt his sincerity.

  6. Meta
    Posted August 22, 2014 at 11:51 am | Permalink

    Fantastic point from John Dingell on the subject of ALS research funding.

    Rep. John Dingell poured cold water on his House colleagues who enthusiastically jumped on the ALS Ice Bucket Challenge, pointing out that many in Congress dousing themselves for charity actually voted against government funding for ALS research.

    A little digging by the Huffington Post showed that 16 members of Congress who have publicized their part in the summer challenge were among those who voted to slash $1.55 billion in funding for the National Institutes of Health, in the Budget Control Act of 2011.

    The group included nine Democrats and seven Republicans, who are named here:

    http://m.nydailynews.com/news/politics/rep-john-dingell-calls-colleagues-hypocritical-ice-bucketing-article-1.1911814#bmb=1

  7. Meta
    Posted August 22, 2014 at 12:17 pm | Permalink

    Bush’s Ice Bucket Challenge.

    http://imgur.com/G70kA9Z

  8. Fran
    Posted August 22, 2014 at 5:10 pm | Permalink

    My favorite markmaynard post yet, and I’m uncool enough to admit it. Thank you. I don’t have OCD but I have a fear of not being in control of the script of the end with health issues. This post brought even more affirmation to my belief in personal control of end of life decisions. Thank you.

  9. grandma
    Posted August 22, 2014 at 10:23 pm | Permalink

    That’s a great picture of Mimmy Gladys as a little girl. However this challenge started, and who did the first one – it sure has brought ALS into the spotlight and raised a LOT of money for much needed research. That’s a very good thing!

  10. Posted August 24, 2014 at 10:45 pm | Permalink

    Thank you for the kind words, Fran. I appreciate it.

    As for the ice bucket challenge, I’ve just been made aware of the fact that I’ve been “nominated,” so now I guess I have to think of something.

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