It’s Important to Share Our ALS Stories on Rare Disease Day

I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our son was 9 months old. I grieved the loss of our dreams of adventures that we would have — family vacations to national parks and growing old together.

I searched online and found a grief group at a local church, but when I called to find out more information, the facilitator told me the group was for people who were grieving a death. I was glad I didn’t yet fit that criteria, but I was left feeling alone.

A few weeks later, our ALS clinic connected me with another wife-caregiver who was a few years old than me. Her husband was diagnosed when he was 36, and they also had a baby boy at the time. They were a decade into the disease, and that phone call from her felt like a lifeline.

“I’m hoping Todd’s disease progresses as slowly as your husband’s, but I don’t want to spend the next 10 years grieving,” I told her.

“You learn to compartmentalize it,” she replied.

I talked with her about my struggle with faith.

“My faith isn’t what it should be,” she said, “but I must be getting strength from somewhere.”

We later met the couple at an ALS support group where they were presenting. He was in a wheelchair, and his neck drooped to one side. His speech was slurred, so she interpreted for him. They provided helpful information, but it was hard to witness a decade of ALS progression — even slow progression.

His condition painted a difficult picture of where we were heading. Given that Todd only had a weak arm at the time, and it was already affecting his abilities, it was difficult to fathom how far Todd’s condition had yet to deteriorate. I was scared for our future, yet I saw a glimmer of hope in their upbeat dispositions.

Even in the midst of his severe disability, they were coping. They had come to the ALS support group from their son’s baseball game, and he was still in his team uniform. The man was sunbaked, showing he had spent much time outdoors. They seemed enthused to connect with other people with ALS and share their experience.

Because ALS is so rare, I feel a kinship with everyone who is dealing with it, no matter their age, but I feel the strongest connection with those who are middle-aged like us. Because ALS is rare, and it’s even rarer to be diagnosed before age 45, there aren’t many people at our life stage who are dealing with this. I value my connections with people in similar situations.

Feb. 28 is designated as Rare Disease Day. It’s important that we share our stories, so others will know they are not alone.

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