ALS and the heavy burden of grief

It was six years ago last week that my late husband, Jeff, and I sat in a neurologist’s office in Maryland as the doctor said, “I believe that this is ALS.” Moments before, I’d been watching the doctor administer a second electromyography (EMG) on Jeff, who found the procedure painful. I’d been quite literally holding my breath in empathy.

After the procedure, Jeff rejoined me in a set of two side-by-side chairs in the windowless office. The doctor pulled his own chair near us. He was seated compassionately at our eye level, and I knew what was coming. Even though we were expecting the news, hearing those words was surreal and shocking.

I despaired for all three of us in the room. I wanted to comfort the young neurologist, who was clearly saddened. Just a month earlier, he’d given us the all-clear from ALS after an initial EMG in the same space, and the elation that Jeff and I felt was like a placebo effect that lasted the entire month.

To celebrate, we went to New York and saw Bruce Springsteen on Broadway, rented bikes and rode through Central Park, and went to a dog adoption event where we agreed that, once home, we’d add a second dog to our family.

During that carefree month, though, Jeff’s worrying physical symptoms continued progressing, the scariest of which was a laryngospasm in our kitchen that left him choking and both of us alarmed. We knew that something was seriously wrong, even if it wasn’t ALS. Without medical knowledge, we also knew intuitively that it was aggressive.

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Those early days six years ago were the start of a path that changed life forever for Jeff, me, and everyone who loved him. I recognize now that it was the advent of grief, an emotion from which I’d been largely and obliviously protected prior to that point.

In my experience, grief was, and is, the sorrowful byproduct of every aspect of living with ALS. For us it began in the neurologist’s office, where we had to begin processing the breathtaking reality of his terminal diagnosis and what it meant for the future we’d planned.

Grief settled into our home in the days and weeks following, where we cried both together and, more often, alone, neither wanting to upset the other. It accompanied every loss both large and small after that: Jeff’s relatively quick loss of speech; the inability to enjoy his beloved ice cream; the last time he was able to mow the lawn; the realization that he wouldn’t survive to meet his granddaughter, who was on the way during Jeff’s last months of life.

I don’t think there’s any way to prepare for the relentlessness and heartbreak of these losses and the sorrow that comes along with them. I don’t think there is any way to “do grief well.” There is only bearing it, and that’s an uneven and erratic road, even six years after Jeff’s diagnosis and four years after his death.

I’m grateful for resources like ALS clinics, therapy, hospice, and medication that can help us process our grief while living with ALS  and after we lose our loved ones. Jeff and I availed ourselves of all of these, and they all provided comfort.

As I’ve written in this column many times, we learned to live well with Jeff’s ALS, largely because of his attitude and courage. We had a meaningful and active life during his illness: We traveled, spent time with friends and family, made memories, and took thousands of pictures. We created happy moments, and more importantly, we learned to live in those moments, not dwelling on the past or worrying obsessively over a future we couldn’t predict. We experienced joy and contentment, laughter, and abundant love.

The time living with Jeff’s ALS was the most profoundly real time in my life, permanently changing how I live.

In my worst moments, ALS and its accompanying grief still give me nightmares, the most horrible of which is that Jeff is still here, but we’re no longer a couple and I can’t reach him. Those wake me up from sleep. I still question my abilities as his caregiver and whether I did everything I could for him. I’ve learned that’s common for caregivers after loss.

In the best moments, though, I believe that living in grief has made me more compassionate, aware, empathetic, and present, a different person if not a better one. My perspective on what matters in life has changed, and I’ve sought to align my life with those values. I don’t always get it right, and it isn’t always graceful, but I’m determined to learn and live the lessons gleaned from ALS, grief, and love.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.