Recognizing and managing the fear that ALS triggers

A few weeks ago, I was driving out of my neighborhood when I noticed a sheriff’s car passing me slowly, headed in the direction I’d come from. Reflexively, I made a U-turn and began following the officer, dreading the bad news that I was sure he was headed to my house to impart.

I recognized how irrational this was even as I turned the car around, feeling shame at how a split-second fear was guiding me. Still, I continued. It was only after the sheriff’s car turned into another driveway — his own, I later realized — that I released my white-knuckled grip on the steering wheel and drove away.

This was a stark reminder, but certainly not the only one, of the heightened — perhaps constant — state of fear that ALS brought when my late husband, Jeff, was diagnosed in 2018. After years of living with Jeff’s ALS and its aftermath, the grip of this fear hasn’t released me.

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Keeping fear in perspective

When Jeff’s unusual physical symptoms began in the spring of 2018, neither of us were fearful. ALS symptoms can be insidious in their mildness, and can indicate a host of other minor issues. Plus, it was a particularly sweet summer for us; we’d just moved into a cheerful new home and were enjoying the pretty views and peaceful front porch. Jeff would delight in mowing the yard and relaxing afterward with a cigar. After leaving a stressful job, he was relaxed, and we were both happy.

As fear often does, it entered stealthily, alongside the slow realization that Jeff’s symptoms were getting worse. Originally experiencing foot drop and occasional calf cramps, by the end of that summer Jeff was slurring his speech and experiencing laryngospasms. The latter left us both deeply alarmed, our eyes catching each other’s with the unspoken understanding that something was seriously wrong.

Our fears morphed and twisted and turned quickly after that, from concern during his electromyography at the local neurologist’s office to despair and numbness when his ALS diagnosis was confirmed that fall. After that, the disease unlocked new fears seemingly daily, for Jeff in his new reality as an ALS patient and for me as his caregiver.

For his part, Jeff was more acquainted than I was with pushing through fear. He’d been a federal law enforcement agent — first with the FBI, then with the Bureau of Alcohol, Tobacco, Firearms and Explosives — for almost 30 years. For an entire career, Jeff had been among the first responders on site at bombings and active shootings. He’d purposefully run toward danger to keep others safe, a trait I deeply respected. Indeed, he’d always made those closest to him feel safe. It was easy to believe that nothing bad would happen in Jeff’s presence.

My experience was different, and I hated being fearful during Jeff’s illness. I’d been afraid of a lot of things as a child, most of them unrealistic, and I’d overcome these early worries to live a life that put my fears in balance with other normal human emotions like joy, confidence, anger, and heartache. Having fear return so prominently was unexpected and unwelcome, particularly when heaped upon the sadness of Jeff’s terminal diagnosis and my exhaustion from caregiving.

The aspect of fear that troubled me the most during Jeff’s ALS was its validity. As adults, we’re often told that 90% of the things we worry about don’t come to pass. In ALS, I found the opposite to be true. There is the initial terror of how this diagnosis can be real and possibly happen to our loved one. Then, caregiving brings its own frights — of not being capable, of causing injury, of our own physical and emotional limitations. And most of all, we experience fear for our loved one’s well-being, their own fright and feelings about progression and loss.

Jeff’s ALS brought fear that settled in me and, so far, four years after his death, hasn’t left. I fear the loss of people I love. I fear witnessing reckless driving because I know how senselessly life can be lost. I fear difficult health diagnoses for family, friends, and acquaintances. It is exhausting, but, I hope, human.

I recognize now that fear had a utility when Jeff was living with ALS. It was fear that created my obsessive checking of the electric chargers that powered the equipment we needed for him to live safely. It was fear that guided my painfully slow positioning of the Hoyer lift to get him out of bed each morning.

And I guess, in a similar way, fear has a utility now. My fear was gained from an impossibly hard-won perspective, and has the most pure and honest sources: concern, love, and caring for others, and also for myself. Keeping it in perspective is the work ahead.

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