Finding the Words to Describe Our Relationship With ALS

I was struck by the wording in an advertisement in Quest magazine, a publication of the Muscular Dystrophy Association, that invited people “coping with amyotrophic lateral sclerosis (ALS)” to participate in an observational study. I think of “coping” as not only dealing with something difficult, but doing so effectively. How am I coping?

Some days, I cope with my husband Todd’s ALS better than others, depending on the disease’s progression. Did he hit a new low that we don’t know how to manage? Did I get solid sleep the previous night? My coping abilities are sometimes stretched to the limit due to the nature of the disease. Ongoing decline. Ongoing stress. Ongoing uncertainty. Ongoing grief.

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The advertisement made me ponder the various words we use to describe our relationship to ALS.

When Todd was diagnosed, his doctor told us there was no cure or treatment. Still, I searched the internet for alternative therapies Todd could try. There had to be something we could do. I told my counselor I wanted to fight the disease. He asked me, “If you are fighting, how do you define winning?”

I said, “We win if we don’t give up.”

After more than a decade of watching Todd’s slow but steady decline, I don’t feel like we are winning. We aren’t really fighting ALS anymore, either. Todd still takes a few supplements that seem to help with some symptoms, but nothing he’s tried has stopped ALS from taking away more and more of his function.

I wouldn’t describe Todd as surviving ALS, either, at least not in the way that sometimes describes other diseases. I’ve heard of instances where people who’ve been diagnosed with ALS experience long-lasting improvement, or the disease seems to stall out, but those situations are rare. The vast majority of people with ALS experience relentless decline no matter what they do, and there isn’t a feeling of victory over a disabling disease that keeps getting worse.

People have said Todd is suffering with ALS. That is absolutely true. A disease that takes away the abilities to walk, talk, eat, and breathe results in much suffering, but even this word doesn’t tell the whole story. In our memoir, Todd wrote, “There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.”

Years ago, when I spoke to a women’s group, someone introduced me and said my husband was dying from ALS. I thanked the group for having me and then clarified that my husband is actually living with ALS.

There will come a point when Todd is actively dying from this awful disease — and we’ve had a few scares when I thought that time might be imminent — but today is not that day.

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