How ALS Weakness Made My Husband Stronger

If you asked my late husband, Jeff, what he’d lost while living with ALS, he might have told you via text-to-speech technology that he missed his voice. His dry wit, irreverence, and affinity for gentle teasing relied, in some part, on his ability to speak.

Or he might have shared his frustration with how spoken conversation went on around him and without him. By the time he’d typed out what he wanted to say, the discussion had moved on.

But most likely he’d have told you that he missed “being strong.” ALS causes weakness as motor neurons stop communicating with muscles, rendering them paralyzed. Physical strength was my husband’s defining characteristic. A retired Bureau of Alcohol, Tobacco, Firearms and Explosives agent and competitive bicyclist, Jeff spent his life using his body.

Mostly, though, he counted on strength to do thoughtful things for people he loved.

Years of helping his dad with projects around the yard and house had honed his carpentry skills to the point of artistry. Jeff used those talents to design and build a treehouse for his best friend’s kids. For other friends, he crafted a stone retaining wall that spanned the length of their sloping driveway. For his daughter, he built a headboard from an old fence that lined their backyard. And while we were dating, he’d covered my kitchen island with reclaimed wood from the old tobacco barn where my horse lived. He used the leftover wood to frame a picture of us.

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So when ALS started robbing Jeff of his physical abilities, he resisted. He mowed our lawn, then he mowed the neighbor’s lawn. He replaced missing dock boards on our pier. He hand-painted a set of Michigan-shaped Adirondack chairs that I’d bought us as a housewarming gift one year.

This resistance I understood. Losing his physical strength meant losing an important piece of his identity, and I admired his desire to keep going, even if seeing him on a stepladder changing a lightbulb was scary.

But here’s what he didn’t see. While living with ALS, my husband’s real strengths — the ones that serve us best in a crisis, the ones that define our character rather than our cardio — grew. As his body failed him, his mind and heart took the lead.

In Jeff’s professional career, he’d been a first responder at some heartbreaking national disasters and frequently stayed on for weeks or months as part of the response team. When he shared these stories with me, I was struck not only by the expertise he brought to the crisis, but also by his composure, calm, and leadership. Even before ALS, he was someone I’d follow into battle.

So it wasn’t surprising when I saw these values kick into high gear on the day of our own disaster — the day his ALS was confirmed. Even expecting the news, we weren’t prepared to hear the neurologist say, “You have ALS.”

It was a gut punch.

It was also too early for brave faces. We held hands as we walked out of the ALS clinic. I can’t remember who drove, but I know it was Jeff who decided we were going for milkshakes before we even left Baltimore. Later, at home, he was quiet while savoring a cigar as we sat together on the front porch.

Then he said to me, “We’re going to live.”

Jeff didn’t mean, in that moment, that he was going to survive ALS. What he meant was, we’re going to live. We’re going to eat guacamole and rent powerboats and go see our friends’ kids play football. We’re going to have breakfast at Denny’s and play ball with the dog and drink coffee in bed.

Deciding to live fully and joyfully in the face of an ALS diagnosis takes far more strength than training for a bicycle race. Getting married not knowing whether ALS will end your marriage in two months, two years, or two decades takes more strength than fixing a pier. Responding to a terminal diagnosis by saying, “I’m going to live anyway, and I want you to do it with me” — that’s strength.

Jeff and I had this conversation often toward the end of his life. It troubled him to need so much physical help, as it reminded him that he’d lost his once-strong body.

“There’s nothing you can’t do,” I would tell him, truthfully, as he made something broken better than new. “You are the strongest person I have ever known.”

Jeff drives a powerboat in the Chesapeake Bay, 10 months after his ALS diagnosis. (Photo by Juliet Taylor)

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