How a brother’s laughter and love helped us live more fully with ALS

My late husband, Jeff, grew up in a family of seven kids. The oldest and youngest were girls, with five boys in between. Jeff was right in the middle, which, he liked to explain with a laugh, made him the most well-adjusted. While all the kids were close, Jeff’s best friend was always his younger brother Steve. They shared a birthday and a basement bedroom in their small, bustling home in Wyandotte, Michigan, as well as several overlapping years at Western Michigan University and as roommates afterward. Both Jeff and Steve had a penchant for finding good trouble, which led to epic stories that only improved with each retelling.

I met Steve and his wife, Diane, shortly after Jeff and I started dating, and I loved spending time with them. Diane and I would roll our eyes when Jeff and Steve were irreverent and hilarious with each other. They always had a witty repartee full of inside jokes. It felt good to spend so much time laughing in their presence.

Jeff’s ALS diagnosis in 2018 broke Steve’s heart. Jeff had called him with the news, and Steve remembers sitting on the stairs of his house afterward and “losing it,” in his words. ALS was the diagnosis we’d all been fearing, and it gutted Steve to think about life without his brother.

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A few weeks after Jeff’s diagnosis, we visited Michigan for Thanksgiving, where the entire family had gathered to observe the holiday and see Jeff. Before dinner, he gave a brief and sincere speech, sharing that he wanted to focus on living, not dying. He wanted normalcy, which in this family meant a sense of humor.

It can be very tough, though, to find moments of levity while living with ALS. Some days are routinely exhausting and terrifying. Caregiving for Jeff was rewarding in the sense that I was doing it for the person I most deeply loved, but it was also somber and scary. As a caregiver, I was caring and thoughtful, but also serious. I don’t think I brought the humor that sustained Jeff.

Steve was different, though. With Steve, Jeff could be a regular guy again. Steve visited frequently during the 19 months that Jeff lived with ALS, taking on caregiving tasks and bringing a sense of levity that our household desperately needed, particularly in the later months of Jeff’s disease. I could see the delight on Jeff’s face when Steve showed up, because he treated Jeff the same as he always had. It was so valuable for both of us.

To be clear, all of Jeff’s family was incredibly attentive and caring during his time living with ALS, and others stepped up just as much. It was a gift that I realize not every family has.

When it came to Jeff and Steve, caregiving had no playbook. Their antics often would leave Jeff slightly banged up (never injured, though) and both of them howling with laughter. They were ridiculous together. Steve pioneered an approach to administering beer through Jeff’s feeding tube when Jeff could no longer drink by mouth. He once put both of Jeff’s legs into one pajama pant leg. They both treated the Hoyer lift like a bumper car, careening around the bedroom in marked contrast to my painfully slow and deliberate use of it. Jeff hated the Hoyer lift, but he hated it a little less with Steve at the helm. Their joint motto became, “When helping hurts.”

Steve helped with everything, even the scariest stuff, which he made less scary for Jeff. Their mutual silliness took away some of the fear that no doubt each of them had.

I’m writing this column from Steve and Diane’s living room, where we celebrated an early Thanksgiving with other family members. While I didn’t know it at the time, Steve had promised Jeff that he’d look out for me after Jeff died, and he has. In the process, he and Diane have become some of my best friends. Happily, I am now the recipient of the same laughter and levity that helped Jeff live meaningfully with a terminal illness, and helped both of us deal with the fear and exhaustion that came with ALS. Sharing old stories and building new memories has been healing.

Jeff and Steve’s relationship inspired and taught me lessons that helped as a caregiver and as a person. Showing up for your people — just as you are — can assuage fear, build love, and make us feel less alone during the most challenging times of our lives. Their relationship reminded me, too, that ALS doesn’t always require doing things differently. Sometimes it’s most valuable when we do them exactly the same way.

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.