What we can learn from living out loud with ALS

I’m writing this column while gazing out over a foggy Pacific Ocean, aboard a ship that’s taking a group of us from Vancouver, British Columbia, Canada, to the icy waters of Glacier Bay, Alaska, and back. Intermittently on this voyage, pods of porpoises come racing close by the ship, and humpback whales surface to exhale 6-foot plumes of breath into the air before diving again, showing their shimmering tail flukes as they do.

Because we’ve been close to the shore, we also saw a mother grizzly bear and her two playful cubs ambling along a rocky beach near the spectacular Margerie Glacier. This trip has renewed my sense of wonder about the natural world. It’s also inspired, once again, my sense of what’s possible in life, even amid challenges.

A sunset over Alaska’s Inside Passage, as seen from a cruise ship in August 2024. (Photo by Juliet Taylor)

When I travel, I’m always carrying memories of my late husband, Jeff, who died from ALS in 2020. Jeff was curious about the world, and his journeys for both business and pleasure took him to Japan, Australia, many countries in Europe, and the Caribbean. So it wasn’t surprising that after his ALS diagnosis, Jeff wanted simply and fervently to live.

He didn’t mean, at the time, that he wanted to physically survive ALS, although we both wanted that desperately. What he meant was that he wanted to create and embrace moments, have experiences, try new things, and savor already-known favorite things. He wanted to spend time with the people he loved and, in doing so, create new memories for all of us. And so, with great intention, he did.

Jeff’s time living with ALS was too brief, just 19 months from diagnosis until he died. But in those months, he took a gondola to the top of a mountain, rafted down a gentle Canadian river, and traveled the full length of the University of Michigan football field in light snow. He drove powerboats, went to bars with his buddies from the Bureau of Alcohol, Tobacco, Firearms, and Explosives, and went deep-sea fishing. For all of these adventures, he was using his wheelchair. He lived voraciously and vigorously.

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Focusing on what we can do

Juan and Meg Reyes share about their relationship during a cruise ship activity in Alaska in August 2024. (Photo by Juliet Taylor)

I’ve been thinking about Jeff a lot on this Alaska cruise because I’m traveling with a small group that includes my beloved friends Juan and Meg Reyes. Juan was diagnosed with ALS in 2015 and has been using a wheelchair full time since 2017. Each summer, Juan and Meg, who were high school sweethearts who’ve now been together for 40 years, travel the country in their recreational vehicle, Big Blue, visiting friends and members of the ALS community while blogging about it.

I love Juan for his ability to deliver the best one-liners (exclaiming, “Oh look, a dolphin,” when dinner conversation turns to politics), for his quiet powers of observation, and for the way he lights up when he talks about his kids. I love hearing the stories and perspective he gained from working as an Air Force medic in nearly every region of the world, delivering first-line primary and trauma care to hundreds of deployed troops. I love Meg, who’s never met a stranger, for her innate warmth, candor, and commitment to making sure she and Juan embrace every moment of life.

And it’s true, too, that I see some of Jeff’s resolve in Juan and Meg, and it makes me grateful that they share their experiences and talents with the world. Juan, for example, is on the board at I AM ALS and regularly mentors others living with the condition, both those newly diagnosed and further progressed.

A humpback whale spouts on the surface of Alaska’s Inside Passage. (Photo by Juliet Taylor)

So much of ALS is frustration, fear, and limitation. Jeff’s ALS was the single most frightening thing I’ve ever experienced, by orders of magnitude over anything else. Building awareness, educating others, and living with hope and intention are the only things many of us nonscientists can do to fight back. I think that’s a big part of why Juan and Meg have emerged as leaders in the ALS community. They show by example and compassion and heart how it’s possible to live well with ALS, helping others as they do.

I told Juan this week that I notice how he focuses on what he can do rather than on what he physically cannot. He nodded emphatically. On this ship, there’s been far more that he can do, and I suspect that he finds those opportunities more often than not. Jeff was the same — he couldn’t walk, but he could mow the lawn. He couldn’t speak, but he could tell me he loved me every day.

I’ll never make light of the losses that ALS brings. It’s relentless and painful and humbling each and every time our loved ones lose any ability. We defeat ALS every time we choose to focus on what we can do, and then do it while we can.

To follow Juan and Meg’s journey, please visit their website.

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.