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Ice Buckets, ALS, and the Right to Die

I’d been avoiding viewing these ice bucket videos on Facebook until a coworker last week informed me it was all about support for ALS.

“I had no idea,” I said. “ALS. That’s Lou Gehrig’s disease, right?”

“Yeah,” she said. We couldn’t remember what the acronym stood for. Amyotrophic lateral sclerosis, we learned.

“That’s a nasty one. Have you read Tony Judt’s account of it?”

“Who’s Tony Judt?”

That same day, my 16-year-old niece nominated me for the ice bucket challenge, the viral social media trend that has already helped raise over $70.2 million for the ALS Association as of Sunday, August 24. I’m proud of her for taking the challenge and nominating her uncles to do the same. I realized I had 24 hours to respond to her challenge, which I thought to sidestep and just donate, and publish this blog article.

The rockstar success of the Icebucket Challenge has reached the likes of Bill Gates and others, and that’s awesome. And I am now avoiding all the hubbub for and against the challenge. What I want to do is talk about ALS itself, those who have experienced its paralytic takeover, and the ethical issue of assisted suicide in relation to condition. First, a bit about someone I admire.

Judt, Hawking, and Lou Gehrig’s Disease

The first firsthand account I read about Lou Gehrig’s disease was from Tony Judt, an acclaimed historian and essayist (author of Postwar). Diagnosed with ALS in 2008, Judt did not let the disease stop him from his work, including an account of his life with the condition in the candid and painfully, minutely detailed Night, published in the New York Review of Books. He was amazingly active and lucid until he died in 2010 at the age of 62.

When his hands were no longer functioning, he dictated. He used an ancient Greek/Roman mnemonic memory technique to pull and piece together details of his life in The Memory Chalet. The guy let nothing stop him, imprisoned as he was within a body that was gradually shutting down while his mind was perfectly active.

Good writers wrestle with dark truths and come back to us with light. They engage because that’s the heart of all that matters: a linking of our lonelinesses, a full breath free of individual suffering to let others know we’re not alone. Judt’s detailing of his struggle with ALS inspires me to embrace life with every capacity I have.

Stephen Hawking, one the best-known physicists in the world, is probably the best-known person living with ALS. Diagnosed at the age of 21, he was told he had 2-3 years to live. As it turns out, he’s lived 51 years past that diagnosis. He’s one of 4 percent of ALS patients who survive longer than 10 years (overall mean survival is 3.6 years; median, 3.25 years).

Judt’s and Hawking’s different experiences with ALS hints at the variability of the condition. Fulfilling lives like theirs are lived, and might be reason enough for many to support research to mitigate and cure ALS and to oppose assisted suicide, as the ALS Association does. But the fact remains that, judging from the study above, you are likely to die within a few years if you have ALS. And so I support the legalization of assisted suicide for those with ALS in large part because of the unique horror of the disease and its relative quick killing power. I say we beat that clock, allow patients to coordinate their deaths with their loved ones, and mitigate suffering before the inevitable strikes.

ALS and Assisted Suicide

It is the philosophical right of the mentally competent, terminally ill to choose the manner and the timing of their death, and for those physicians facilitating the procedure not be prosecuted.

Hawking, notably, came out in favor of assisted suicide in 2013 stating something akin to my clumsily phrased position. “We don’t let animals suffer, so why humans?” he said in The Guardian interview.

When I think of Lou Gehrig’s disease, physician-assisted suicide naturally comes to mind. It is such a devastating disease that I consider ALS one of the top reasons that voluntary euthanasia should be legal in all 50 states. Yet, I imagine that if others read about its devastation–say, from this Toronto lawyer who chose assisted suicide because of ALS–the topic might become a bit less polarized. Still, there won’t be a bucket challenge in favor of donating to Death with Dignity, or Compassion and Choices, anytime soon.

I don’t mean to distract from ALS research. I just think that until we find a cure, and one that is truly affordable (and stem cell therapy alone is in the tens of thousands of dollars, as you can read from the Toronto lawyer’s letter at the link above), people should be able to determine their death, and have others assist them safely, without fear of criminal prosecution of any of the parties involved.

So here’s how I’ve spoken with donations: I’ve just donated to the ALS Association and Death with Dignity as I’m writing this article. Both the research on ALS and the advocacy for humane assisted suicide go hand in hand, to my thinking. We should challenge moral assumptions in the name of compassion.

And that might seem like something easy to say for someone who hasn’t believed in God for 17 years, and has taken David Hume’s side of the issue since late high school.

But it’s not.

I have a loved one with late-stage brain cancer, and my father has a neurodegenerative disorder. I don’t like to speak that personally in my posts, but I write that because I want to be honest that the very fact of having someone close to me with a terminal illness nearly prevents me from speaking about assisted suicide. I simply don’t want to come off as suggesting that IF one has a terminal illness, one OUGHT to seek out assisted suicide. In fact, I worry about that with any readers who might disagree with me on what they want, or what their loved ones have wanted. To that I say, “That’s fine. I still want that freedom for others and myself.” In fact, even as I am ready to publish this, I hope that no one in my family actually reads this article. It’s all too close to home.

Well-financed research is critical; so are humane options. I want to live in a country where the name Jack Kevorkian inspires the same respect as the name Jonas Salk. Also, I’d like a country where the majority know who both of these guys are. I have my doubts.

Anyway, back to the ice buckets. Thank you all for your participation. Thoughts, challenges?