How Love Conquered Fear After My Husband’s ALS Diagnosis

ALS is notoriously relentless on the human body. But it can be equally brutal on our emotions, and for my late husband and me, this was especially true when he was diagnosed.

When people ask about the process of Jeff’s ALS diagnosis, I usually recount the chronological story of his medical tests and results at a series of appointments in the fall of 2018. I talk about his physical symptoms and how fortunate we were to have access to good medical care. It’s a story full of information and facts.

But I don’t often describe how it felt. I don’t talk about the feeling of dread that settled on us that fall. I don’t usually share how our fear increased with the slow realization that Jeff likely had ALS, or the exhausting torrent of test results that left us, in turns, hopeful and despairing. And I don’t talk about how good it felt to emerge from that dark time and get on with the absolute joy of living, but I’m so glad we found our way there.

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The appointment that changed everything

I first believed Jeff had ALS when he came home from a routine spine doctor appointment. We’d been so unconcerned I hadn’t even gone along. Yet when he told me the specialist had mentioned ALS as an unlikely possibility, something to be ruled out, my heart sank. I just knew.

This gut feeling made no sense. Outside of the Ice Bucket Challenge, I knew nothing about ALS and had no reason to suspect it. Yet I still remember the moment, standing in our dining room, somehow aware.

It was the last medical appointment of his that I ever missed.

More symptoms lead to more testing

Jeff had been hit by a car while bicycling in August 2010 and lived with chronic hip and lower back pain as a result. That had always been our bigger medical concern, as it interfered with his sleep and, often, his comfort.

So when he developed a seemingly minor foot issue in the spring of 2018, it was only a source of annoyance and, unbelievably now, bemusement. He complained about it occasionally. “It’s weird,” he said. “I can’t lift my toes up.” He couldn’t keep his favorite leather flip-flops on his feet.

The spine doctor was compassionate and circumspect when I joined Jeff for a follow-up appointment, suggesting a course of tests through a local neurologist.

The follow-up electromyography, or EMG, was promising, and afterward, we jubilantly ditched town for a weekend in Manhattan, where we saw Bruce Springsteen’s Broadway show. Over Jeff’s first and only salon pedicure, we debated the merits of adopting a brindle-colored puppy who’d climbed all over us at an adoption event we’d discovered in Midtown. We were heady with relief, possibility, and a future.

Once back home, though, Jeff’s symptoms escalated quickly. The neurologist, concerned, scheduled a repeat EMG, a spinal tap, blood tests, and a swallow study, the latter to address newly slurred speech and choking concerns. On his own time, the neurologist researched obscure tropical diseases after learning of a business trip Jeff had recently taken overseas.

The emotional impact of an ALS diagnosis

Once Jeff’s ALS diagnosis was confirmed, and then confirmed again, there were no more tests to take, no results to breathlessly await and to hinge our every decision upon.

I went every day to Quiet Waters Park in Annapolis, Maryland, alone or with my friend Liz. I felt safe there to walk and cry. I took our dog, Rudder, each time. My best friend for 10 years already at that point, he didn’t know what to do with this despondent version of me, and he walked quietly at my side.

During these weeks, Jeff spent time alone, too, sitting by the water with his cigar. We each needed to process our shock and fear, coming back together later each day with our game faces on, so as not to upset the other.

Reflection worked, and over the weeks ahead, love overtook fear for the first of many times during our journey with ALS.

One Sunday morning during this time, we got married at home with four dogs and eight people in attendance. We’d discussed the idea for years. I wore a simple dress and ordered flowers from Whole Foods, and that afternoon we turned on football. It was our first joyful day in many weeks, but it was the first of many joyful days and moments in our marriage.

In the weeks that followed, the foundation for a new kind of future emerged. It wasn’t the one we’d planned, but it was still full of happiness and gratitude, perhaps even more so because we’d seen firsthand that love can, at times, overcome fear.

Juliet Taylor, Jeff, and Rudder on their wedding day in 2018. (Courtesy of Juliet Taylor)

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