Remembering Helps Me Be More ‘OK’ on Tough Days

Some last wishes are fulfilled in ways different from how they were envisioned

Juliet Taylor avatar

by Juliet Taylor |

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I’m writing this column on a tough and emotional day — the anniversary of the 2018 ALS diagnosis for my late husband, Jeff.

For the day I might have planned, I’d be hiking up Old Rag Mountain in Virginia, perhaps sharing the pretty view on social media, suggesting a bit of positivity on my journey living with loss.

Some days, the mountain hiking happens, whether literally or figuratively. Those days are triumphant and healing and tinged with bittersweet progress toward rebuilding a life. They make me feel happy and alive, and they happen more often than they did soon after Jeff died in May 2020.

Today, however, I’m home with a head cold, lying on the couch under an old sleeping bag and spending far too much time scrolling idly on my phone, sad and unmotivated. These days, too, are common.

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Being ‘OK’

Jeff’s wishes for my life after his death were clear, but nonspecific: He wanted me to “be OK.”

He stacked the deck, bringing a second rescue dog into the family to join our much-loved senior dog, Rudder, and insisting that I find a new horse to help fill my days with activity and friendship, be it human, canine, or equine. These were incredibly selfless gestures that may not have been practical for us while living with ALS, but were prescient in their effectiveness. My life today would be far diminished without these pets at my side.

What neither Jeff nor I realized, though — him in asking me to be OK, and me in promising that I would try — is that being OK without your spouse looks very different. There’s no going back to what was — there is only building a “new OK.” Only too late did I find this loophole in his request, something that would’ve changed the conversation.

Last wishes

Late this summer, I lost a radiant friend who felt like a sister to me. She was, without exaggeration or hyperbole, the most vibrant human being I’ve ever known. Living with the late stages of ALS, she was generous and funny, and devoured life and all it has to offer.

When visiting, I’d climb into her bed, rest my head near her shoulder, and we’d talk. Her computer had dozens of tabs open, all music or books she’d discovered, quotes she liked, emails she was writing to lobby for change in ALS treatment that would benefit people living with the disease in the future.

On one instance, lying there together, I remember her saying, I don’t want to be forgotten.

It was a serious conversation, and I felt the weight of her question, but I wanted to gasp aloud at the idea. How could she imagine ever being forgotten? How could she not know how much she meant to so many, that her memory would remain a north star for hundreds, maybe thousands of people?

I think about my friend and that conversation every day. And today, I’m thinking about it as I think about Jeff.

I reflect on Jeff’s wish for me to be OK now. Neither of us knew that being OK wouldn’t be me going back to life before his ALS diagnosis. That path is no longer available, replaced by something far more crooked, though occasionally offering an incredible, hard-won view. My new OK absorbs into it the memories and presence of Jeff, all the many ways he irrevocably and beautifully changed my life, and the sadness that he’s not physically here to experience the impact that he had on me and so many others.

Still under the sleeping bag, I look around the room.

I see one couch Jeff and I bought years ago. It’s the couch on which I later slept beside his hospital bed. The other couch I bought a few weeks ago to accommodate a growing number of guests that I happily host.

Rudder’s collars and inked paw print are on display, now that he’s no longer here, but so is a recent photo of my new dog, Sailor, playing outside.

A beautiful wooden clock that Jeff’s brother Mark handcrafted for me sits front and center on the bookcase. Jeff never saw this clock, yet looking at it every day reminds me of him, and of his family, our family, which I’m still fortunate to have.

I realize now that most days, I feel something different than OK. I feel overwhelming gratitude for having shared a life with Jeff, for all the beauty that remains in my world and all that’s entered it since he died. This beauty is everywhere — in nature, in moments, in friendships, in time with his granddaughter, whose birthday we celebrated last weekend.

Jeff is physically gone, but he shaped the remaining trajectory of my life. Any version of OK will always incorporate him.

We see Jeff's head and shoulders and Juliet's head with a boat motor behind them. They're in a body of water, and some land with greenery and trees is on one side in the distance. Jeff wears a gray hat, glasses, and a vest over a pinkish-purple shirt. Juliet is smiling and wears earrings.

Jeff and Juliet boating in Michigan before his ALS diagnosis. (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.

Comments

Bill Wade avatar

Bill Wade

How moving Juliet. Thank you. WW

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Lisa Patten avatar

Lisa Patten

Juliet, thank you so much for sharing your story. I am so sorry for your loss -- I did not know. Time has a way of slipping by as you have noted. When you are next up in the DC area, please do look me up, would love to reconnect. Until then, please know you are remembered and I am praying you are more than okay. Peace. Lisa

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