Building a home amid the loss and uncertainty of ALS
We're still creating memories, 15 years after my husband's diagnosis
Last Sunday, on the morning of our 22nd wedding anniversary, as I was getting my husband, Todd, out of bed, he asked if I’d heard the song “To Build a Home.” I hadn’t.
“Alexa, play ‘To Build a Home‘ by the Cinematic Orchestra and Patrick Watson,” Todd said. Then his Echo Show device began playing the song, with Watson on the piano.
“I’ve been listening to this when I can’t sleep,” he continued, “and I’ve been thinking about our life.”
After the piano introduction, Watson sings in a hauntingly beautiful falsetto about a house built out of stone. Following the opening verse, he sings the chorus in his rich natural voice:
“And I built a home/ For you, for me/ Until it disappeared/ From me, from you/ And now, it’s time to leave/ And turn to dust.”
“This song almost makes me cry,” Todd, who has ALS, said. And then, with his dry humor, he added, “If I had any emotions, it would make me cry.”
After a short interlude with stringed instruments, Watson sings the second verse about climbing to the top of a tree in the garden to see the world.
“When the gusts came around to blow me down/ Held on as tightly as you held on to me.”
As we listened to Watson sing the final chorus, Todd said that the song reminded him of the home that we’d built together, and how his life is coming to an end.
“And now it’s time to leave/ And time to die.”
The song ended, and I cried.
Celebrating 22 years
We had our anniversary dinner the night before on our traditional weekly Saturday date, with pan-seared Alaskan wild salmon, shredded and fried white sweet potatoes, and yellow wax beans.
The meal was delicious.
We also exchanged gifts and watched a documentary.
With Todd’s ongoing breathing decline, it’s uncertain whether he’ll live to see anniversary No. 23. That reality hit me Sunday morning as I listened to the lyrics about love, home, and impermanence.
I wiped my eyes and tried to lighten the mood. “We’ll play this one at the funeral,” I joked.
“Maybe,” Todd said, without a hint of jest.
“You really don’t know if you’re close to the end,” I said. “We thought that five years ago after we found that song ‘Clouds.'”
“It was actually 11 years ago, because it was when I first got the accessible van,” Todd said.
We’d attended a concert that featured choirs from our local schools, in which our daughter sang with her school choir. Another school had performed “Clouds” by Zach Sobiech. After the concert, Todd found the song on iTunes and played it via Bluetooth on the van’s stereo.
Sobiech had written the song while he was dying of cancer. He writes about being down and losing his grip, but then going up in the clouds where the view’s a little nicer.
“When we get back on land/ Well I’ll never get my chance/ Be ready to live and it’ll be ripped/ Right out of my hands.”
I could see in the rearview mirror tears streaming down Todd’s cheeks.
“Clouds” was another song that resonated as we went through an earlier season of anticipatory grief. That was more than a decade ago, when Todd was just a few years post-diagnosis and we thought his death was imminent. I’d even imagined playing that song at his funeral then. Yet here we are, still building memories, even as the future is fragile and uncertain.
Todd again found a way to inject humor into the heaviness. He asked me to search the internet for a comedy bit by Kevin Nealon, who joked about throwing a goodbye party for a terminally ill friend who was given three months to live.
The party came and went, and three months later, his friend was still alive. Then it was five months, six months, seven months, eight months … “Now he’s ashamed that he’s still alive,” Nealon said as a laugh line.
“That’s how I feel,” Todd chuckled.
I laughed, too, because alongside the uncertainty and loss, laughter is part of the home we’ve built.
Todd and Kristin Neva celebrate a week before their 22nd wedding anniversary. (Courtesy of Kristin Neva)
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