How unbroken family bonds became my pillars of strength

On my first date with my late husband, Jeff, he rhapsodized about his family. He was the middle child of seven, and it was clear from the start that his brothers and sisters were a central part of his life. They’d grown up together in a home in Wyandotte, Michigan, that Jeff’s grandfather had moved into in 1910, after arriving from Poland.

Jeff never missed a chance to drive me by the 5th Street house on our visits home. He’d point out the dusty lot by the railroad tracks where they played baseball and the sites of their various teenage adventures. As I grew to know his siblings, I cherished their importance in his life and, eventually, my own. I earned my own family nickname, and my own quirks and idiosyncrasies became fair game for teasing. I loved it all.

When Jeff was diagnosed with ALS in the fall of 2018, his family was shocked and heartbroken. He and I lived in Maryland at the time, but we made an immediate beeline for Michigan, where a couple dozen of us gathered for Thanksgiving. Jeff, whose voice was already faltering early in his diagnosis, proclaimed that we were going to deal with ALS by living. It was an edict, it turns out, that we obeyed. It was easy to be upbeat in those early days of his illness, because his symptoms were mild and his mobility was unimpaired.

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As Jeff’s ALS rapidly progressed, his siblings rallied. They’d caravan to Maryland and take over our house with efficiency and laughter, administering his tube feedings, emptying suctioning and cough-assist machines, changing sheets, and cleaning out the fridge. When they were back home, they’d answer the phone when I called in the middle of the night from 500 miles away, frustrated or scared while caring for their brother.

When he died at home in May 2020, they were with us, holding his hands. They stayed with me for days after. We were equally in shock, equally despondent, but together. They cleared the house of every trace of ALS, which is what I’d wanted. I missed Jeff, but I did not miss ALS.

They also made Jeff a promise, though I didn’t know it at the time. They said they’d look after me, and what a gift that has been.

Sometimes that has meant tough love, like making sure I took care of myself when it was far easier — almost preferable — not to. Other times, they imparted laughter and belonging, which is what his family has always meant to me.

I’m writing this column from a cottage on Green Lake in northern Michigan. It’s remote, quiet, and secluded here, and the shoreline is mostly trees interspersed with summer homes. On summer days, the lake is spotted with pontoon and fishing boats, though not many. It’s what I think of when the word idyllic comes to mind. And it’s become one of the most important places in my life.

A recent early morning view of Green Lake’s shoreline in Interlochen, Michigan. Columnist Juliet Taylor still visits here each summer with the family of Jeff, her late husband. (Photo by Juliet Taylor)

The importance of togetherness

Jeff first brought me here when we were dating. I understood the significance of this gesture, as it was a place he and his brothers had found together and visited for a week every summer, fishing all day, telling stories in the evenings, and, by his account, collapsing from exhaustion and laughter at night.

A few months after Jeff died, his siblings and I came to the lake together for a week. Our wounds from his loss were raw, and while there wasn’t much joy, there was togetherness. We made campfires each night, watched the dogs play on the sandy beach, and slept hard from sorrow and exhaustion.

It’s a tradition we’ve upheld, coming back to Green Lake for a week each summer to be together and remember Jeff. We boat, read, nap, play cards, and tease one another. We enjoy exquisite homemade meals each night. Each year has become a little happier, a little more healing. In the intervening months, we show up for one another, too — for illnesses and broken limbs and surgeries, for baby showers and graduations and weddings.

Life with — and after — ALS is never idyllic. There’s no wrapping up the story with a pretty bow. We are forever changed. The disease seeks to make bodies weaker, taking away movement and speech and breathing. But there are things that ALS can make stronger if we let them: love, time together, empathy, family bonds. In fairness, it can divide these things, too, through circumstances, misunderstandings, and fear.

I’m grateful to Jeff’s family, who have become my family, too, for keeping me close, not just during his illness but also after. They’ve added a layer of love to my life that I never expected, and it’s propelled me forward on my worst days and given me some of my best.

Juliet Taylor and her family share an afternoon on Green Lake in Interlochen, Michigan. (Courtesy of Juliet Taylor)

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.