Ice Bucket Challenge and my Experiences with ALS

I’ve been challenged to respond to the ice bucket experience. Here’s what I’ve been thinking about: my ALS patients whom I met while I was employed as a Hospice chaplain. I met a LOT of ALS patients. Too many. But I learned from them, and so deeply appreciate their willingness to engage me in conversation.

Speaking of conversation, and ice water, even…those are some of the most difficult things for many ALS patients. Often, though not always, ALS affects their ability to swallow. Ice water, water especially, being one of the most difficult things to swallow. This is what I was thinking of in response to the ice bucket challenge.

I was thinking in particular of one of my early ALS patients. He–I’ll call him Joe– used a computer to speak for him; the computer actually did speak in mechanical voice. Joe could also print out what he wanted to say. But it was tedious for both of us. I learned NOT to ask open-ended questions despite my excellent pastoral care training. It just took too darn long. I also learned that I had to pay my dues and talk baseball before we could talk about much of anything else.

Joe had been an engineer, a very capable person. When I met him, he was in a wheelchair; he was always in his bedroom. He had an IV pole that enabled him to keep his head up through a headband and I think a rubber band.

I learned that folks with ALS often are “emotionally labile.” Besides not being able to control their muscles, their emotions would take turns. So, sure, we engage in meaningful conversation. The patient cries. Now, the patient is choking because tears get caught in their throat. They often have lost the ability to reach their face to wipe their own tears away; they can’t blow their own noses.

Well, I didn’t intend to drag everyone down with the sobering symptoms of ALS. It is a cruel, disrespectful, thief of a disease. It is well worth the attention this crazy fad has created.

What I most respect about the people and families I’d met was their dignity. Their spirits were very lively. They were such vibrant people. The thief that stole their muscles and nerve-responses did not steal them. They were very much there, and I got to know some people in precious ways as they lived with worsening symptoms.

Jesus tells the disciples in Gethsemane, “the spirit is willing but the flesh is weak.” This describes so very many of the people with ALS whom I’d met. Their spirits were indeed, willing, eager, lively. The flesh, though…was weak beyond imagining. Gethsemane seems a fitting metaphor for the bitter and awful struggle I’ve observed for ALS patients. Indeed, who wouldn’t ask that the cup be passed from them–to spare them such trial of body, mind, and spirit?

Most of the people with ALS whom I came to know demonstrated a way of beautiful surrender. This is not to glorify the disease, or to make heroes of folks, but to acknowledge their coming to terms with the thief, and with what remained. So many people I remember had a sharp wit; of course, they’d catch me off guard with their humor in the face of my trying to take them seriously. But their ability to surrender with humor and realism, a special grace of knowing they ever so much needed help doing pretty much everything. Gethsemane is also about surrender. Is there a redemption in surrender, even with ALS? That’s likely glorifying things a bit too much.

Time for a reality check. Or, if nothing else, a nice, icy bucket of water dumped over my head. Thanks for the challenge, April.

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