the ice water/ice bucket challenge

First, let me say that I’m very pleased that this “ice bucket” or “ice water” “challenge” is bringing awareness to amyotrophic lateral sclerosis, otherwise known as ALS or even Lou Gehrig’s disease.

I refer to it as Beth Jenkins’ disease, because I never knew Lou Gehrig. I did, however, know Beth Jenkins.

Beth was my cousin, maybe even my favorite cousin. She was the youngest child of my mother’s oldest brother, and pretty close to me in age, just a few years older actually. Beth was a kind, sweet person every time, all the time. Even when she was in the middle of a divorce from a worthless son of a bitch of a husband, instead of trashing that asshole, she would say things like “well, I’ll just have to find somebody better” and “his loss.”  Both of these things were true, and she accomplished the first while living the latter.

Beth’s journey through ALS was simply fucking horrifying, and that’s all there is to it.  It started very subtly, so much so that it was probably a couple of years before she or anybody else thought anything was really going wrong with her.  She started getting clumsy – tripping on things and dropping things.  We all do that sometimes, so she wasn’t worried.  When it became chronic, somebody finally thought to do the special blood tests and electrodiagnostic tests that allow doctors to figure out that a person actually has ALS and not some other neurological disease.

So if you’ve done or are considering doing this ice bucket challenge, I want you to hear (read) one thing and please, try to fully understand it.

A diagnosis of ALS is a death sentence.  Period.  There is no cure.  It is not a matter of IF you will die, it is a matter of WHEN you will die.  About 50% of people diagnosed with ALS are dead within three years.  The other 50% live another 2 to 4 years, usually, with some outliers living up to 10 years after diagnosis.  Beth was pretty much an outlier – she didn’t live 10 years after diagnosis, but she sure gave it her best effort.

So, to recap:  ALS diagnosis = knowing you will die, and soon.

Beth (and her parents and even my mom) started doing things she’d always wanted to do, the things that she wouldn’t be able to do for much longer. The big thing I remember was going to Wimbledon to watch world-famous athletes play. Those are the photos I remember the most, of Beth and her mom (my Aunt Franny) and my mom in England, enjoying the sun and tennis and, just for a little while, forgetting she was busy dying a little every day.

Some time before Beth died, she moved in with my mother and stepfather. Her parents simply couldn’t take care of her by themselves any more, and they reached out to family for help. We were there, right there with her, as she continued to fight ALS.

Beth took a shine to my younger daughter early on, and once she got her ALS diagnosis, that shine took on a special meaning for both of them. Beth started passing along to my daughter some of her favorite children’s books. While Beth could still read, my daughter was very young, and when she visited or we visited, Beth would read books to my daughter and usually give her a few of them at the end of the visit.

One of the things I’ll never forget was walking into Beth’s room, maybe six or eight months before she died. She couldn’t turn book pages any more, nor really even hold a book very well. I walked into her room; Beth’s propped up on her bed, and my daughter is sitting next to her, reading one of the books Beth had given her out loud. I couldn’t do much more than stand in the doorway, watching and crying. My daughter was so young still that she barely remembers this happening, but I make sure to tell her the story every time Beth comes up in conversation, so she’ll never forget such a special moment.

The true cruelty of ALS is that it doesn’t kill your brain. It kills your body, one nerve connection at a time, but it leaves your intelligence, your cognitive abilities, alone. You know exactly what is going on and there isn’t a goddam thing you can do about it. It’s like being trapped in a coffin, albeit one you have to try to keep feeding.

The day Beth died, my daughter and I were on our way to go visit her. We’d seen her a week or so earlier, but we all knew she was going to die soon, so we were trying to spend as much time with her as possible. I was driving inappropriately, no doubt about that, because my mother had called that morning and said “you’d better hurry.”  I was hurrying, but I wasn’t hurrying enough.  Another call from my mother removed our sense of urgency; once I knew Beth had gone, I could slow down.

I missed getting to say goodbye to my lovely cousin by a stinking half an hour, maybe less. The last time I talked to her (and at that point, she couldn’t talk at all), I just sat with her, watching Jeopardy! on TV and trying to pretend the end wasn’t near.

Getting back around to this ice bucket challenge, then, and why I started writing this in the first place.

I’m sure most people have good intentions in doing this, but frankly, the trend distresses me a bit. It started as a thing among some pro athletes – baseball players, if I remember correctly – who were dumping ice water on themselves as a way to get out of making a donation to the ALS Association or some related charity. The deal was one of your buddies would issue the challenge, and you could either donate a small sum ($100) or dump ice water on yourself, but you had to provide verifiable proof of the dumping or you were on the hook for the money.

Read that again. Donate or dump, that was the origin.

I sincerely hope that most folks participating in this thing are doing both. Any amount of money donated helps, even if it’s just $10. I hope all these celebrities doing it are donating more than that.

If you want to do it, go ahead. The really great thing is that donations to the ALS Association are up something like 300% over this time last year, and this stunt has brought a lot of attention to a much-misunderstood disease.

For myself, I won’t be doing it – and I’m quite thankful nobody has “challenged” me yet. Maybe those close enough to feel comfortable doing so remember my cousin Beth, and that’s why they haven’t issued the challenge. I’m glad, too, because all I can think about every time I skip watching one of those videos is my cousin Beth and the long, horrifying process of watching her die.

Every day.

Now my family is dealing with the death of another of my cousins, Liza, of liver failure. Liza wasn’t much older than I am, either, and it doesn’t seem fair that she couldn’t get a liver transplant in time to save her life. I guess she wasn’t rich enough, or famous enough, or qualified enough to get the life-saving procedure she needed to be around for her husband and children. Even though I knew Liza was in poor health the last couple of years, I didn’t have to watch her die in such excruciating detail like I did with Beth. It seems petty to be grateful for not watching somebody die, but that’s how I feel, and even that hurts. I hadn’t talked to Liza in a long time, maybe three years or so, but I’ll still miss her.

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after two weeks of going light on Facebook

Since 1 August, I’ve made 6 posts to my Facebook page.

1 photo of my kid (uploaded via iOS)
1 thanking somebody for sending me a book
1 email from a student
1 photo for a friend
1 Kickstarter link
1 comment on Robin Williams’ death

I didn’t make any at all (I think) in the first week of my little Facebook sabbatical, and it wasn’t nearly as difficult as you might think it would be.

My plan is to keep this up for the rest of August. I still look at FB a couple times a day, comment on some friends’ posts, that kind of thing, but the obsessive looking-every-ten-minutes shit had to come to a screeching halt.

I’ve been trying to find a way to articulate why I’m doing this and what it’s doing for me. It’s hard to put into words, but I’ll try.

What it’s doing for me is giving me the opportunity to really read what my friends are posting. I’m far less concerned about what I’m going to put up, and more concerned with what I can tell my friends that will help, inform or amuse them. I love making people laugh – I’m not particularly good at it, I don’t think, but I sure love trying. What I’ve found is kind of like when you stop talking and start listening – you learn things about people, and quite often those things are interesting.

It’s also created a lot of “extra” time for me. Time, for instance, to really focus on a couple of work projects that I was slacking on. Time to rewrite all my syllabi for the fall semester, and really focus on them to update them instead of desperately just changing some dates at the last minute. Time to hang out with my kid. Getting to bed at a decent hour.

I think, though, and perhaps more importantly, what my FB sabbatical has done for me (and kind of my hope when I thought of it), is that I feel better about myself. Simply not reading everything – frankly, there’s no way I can keep up with everything posted by everybody if I’m not spending hours on FB – is improving my self-esteem.

I don’t feel like a rapist. I don’t feel like a racist. I don’t feel like a sexist. I don’t feel like I’m ignoring the moral implications of the riots in Ferguson. I don’t feel like I’m wrong for thinking Israel (or Gaza) is right (or wrong) in how they’re dealing with Gaza (or Israel). I don’t feel like a filthy xenophobe or an asshole homo-hater. I don’t feel like I’ve abandoned my faculties because I don’t support (or oppose) Obamacare or any of a hundred other hot-button semi- or pseudo-political ideas.

I like the way I feel when my Facebook feed isn’t telling me I’m a horrible person because I’m not doing enough about THIS ISSUE RIGHT HERE RIGHT NOW. I really do.

I can’t change the nature of Facebook, but I can certainly change how I interact with it. Instead of burying myself in FB, I’ve actually been talking to people. Instead of sending a FB message to my cousin, I called her. Instead of posting a photo of my kid on FB, I sent it to my mother just for her.

It’s freeing, and I feel like I’ve taken a big step towards controlling Facebook, rather than having it control me.

I suppose I’m lucky, in a sense, that I don’t have a particularly addictive personality. I never got involved with drugs or tobacco, and once upon a time when I felt like I was drinking too much, I just quit doing it that much. I’ve walked away from toxic friendships and even destructive family relationships. I was never one that pined away for years over lost loves. Caffeine? Well, that’s about as close as I think I get to anything resembling an addiction, and I periodically give that up for long periods of time, too.

Anyway, and I know this is getting long, there’s still two weeks to go. We’ll see how it all pans out. In the meantime, give me a call 🙂

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