On his birthday, I remember the person who taught me to live fully
Six years after he died, Jeff still affects how I approach each day of my life
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Today is my late husband’s 66th birthday. ALS took Jeff from our family just five days after he turned 60, and only 19 months after his diagnosis.
Hearing the words, “This is ALS,” in the fall of 2018 was shocking and unbelievable. The early weeks and months after his diagnosis were a blur of processing anew each day what couldn’t be true: Jeff had a disease that arrived with such benign slowness — a mysterious, painless foot drop — and now was going to take his life, along with the happy one we’d created together. It was, and still is, impossible to comprehend.
I credit Jeff fully with the vigor and zest with which we lived after his diagnosis. He was a decisive man, and had built a career in law enforcement based on being competent, reassuring, and steadfast in a crisis. He applied those attributes to his own illness and the manner in which he approached it. Even after he could no longer speak, he was reassuring to family and friends. He brought purpose and direction in how he wanted to spend his remaining time.
Jeff managed his illness just as he’d managed the many crises he’d handled in his career, and people looked to him for leadership.
Embracing each day
One could argue that this is an unfair burden to place on someone living with ALS. But in Jeff’s case, it was both his natural inclination and his way of being after 30 years with the Bureau of Alcohol, Tobacco, Firearms, and Explosives. His bravery helped me summon my own courage for what lay ahead, both as his caregiver and, eventually, as his widow.
At the same time, despite his outward strength, I know he had many moments of despair and fear, though he wasn’t often inclined to share them.
Jeff fervently wanted to live — not in the sense of months, although we wanted that, too — but in terms of embracing each day and all that it might offer. He wanted to travel, spend time with loved ones, care for the wildlife that visited our patio, and enjoy a peaceful cigar on our front porch on warm evenings. Jeff was a master at prioritizing what was important and at making time for it. It was one of the things I cherished most about our relationship and marriage, and I learned from it.
Jeff’s only ask of me after his life with ALS was that I “be OK.” We never talked about what that would look like, I think by mutual choice. It was impossible to conceive of a life without him. And it still feels impossible, six years on, to comprehend that he is no longer physically here. While his loss left me, and others who loved him, reeling, how present he has remained in my life is comforting.
What my husband taught me about living
Before his death, I had never experienced life-altering grief. I live with it now every day, joining the legions of others who have had to learn to somehow exist without the person they love most in the world.
Jeff Sarnacki competes in a bike race before he was diagnosed with ALS. (Courtesy of Juliet Taylor)
My favorite quote about grief — if you can have a favorite anything about grief — is: “Be the things you love most about the person who is gone.”
I find solace in this, because there was, and still is, so much to love about Jeff. I feel connected to him when I’m out on the water, or caring for my pets, or sleeping in our bed. I feel connected to him in the mobility-friendly home we bought together, which I didn’t expect to stay in after he died, and now wouldn’t dream of leaving. I feel connected to him in both epic adventures and mundane moments, like enjoying ice cream, his favorite food.
As a former caregiver, I have no one-size-fits-all advice to offer our community, as everyone’s journey is different. I have only deep gratitude for the chance to share my memories and thoughts via this column, which is a healing lifeline and has connected me with so many wonderful people.
Six years after his death, Jeff is deeply interwoven into the fabric of my day, every day, and in the way I think about and approach my life. I learned so much from him, and I try to live each day in a way that honors him. There are plenty of days — still — when I don’t feel like getting out of bed, and on these days I ask his indulgence and hope he would understand how deeply he is missed.
Happy heavenly birthday to Jeff, the person who taught me the most about living. I will see you again.
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Cherie Villano
Thank you for this beautiful essay and tribute, it is heartwarming.
Don Mikush
Just beautiful.