06/18/2026
"Sometime in my mid-40s, I wrote a list of goals I wanted to achieve before turning 50. I no longer have the list, but I remember a few things on it: Learn a second language. Complete one half-marathon each year. And my then-favorite, visit 50 countries by the time I turned 50.
At the time, those goals seemed attainable and were aligned with the kind of person I wanted to be — healthy, curious, and motivated. That was before my late husband, Jeff, was diagnosed with ALS when I was 48 and he was 58.
Jeff’s 2018 diagnosis instead stripped us both bare to the core of who we needed to be to get through each day. Our goals were no longer about bettering ourselves, but about surviving. Curiosity no longer meant travel, but clinical trials. Self-care wasn’t bike rides for him and mani-pedis for me, but sleep, which was a near-impossible commodity for both of us while living with his ALS.
Jeff and I had always been the people to accept every travel invitation, attend every concert or ballgame, and gleefully hop on a plane to visit loved ones. In life with ALS, though we still traveled and spent time with friends, our decisions around leaving home were governed by how accessible and affordable a destination was, and whether we both felt physically and emotionally up for it. And as Jeff’s ALS progressed, that answer increasingly became no." -Juliet Taylor
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