Living as Though We Have a Future

Our daughter, Sara, is working on several pieces for an upcoming choir festival. One selection is the song “My New Philosophy” from the musical “You’re a Good Man, Charlie Brown.” The other evening, as our family gathered for dinner, Sara sang the lyrics in which the character Sally tries out different catchphrases, such as, “We should live every day as if it were the last day of our life.”

“That’s a terrible philosophy,” my husband, Todd, said. He has lived under the cloud of a terminal disease for more than a decade, ever since he was diagnosed with ALS.

“What do you mean?” I asked. It’s such a common phrase in our culture that I hadn’t given it a second thought. “I’m surprised you feel so strongly about it.”

“I wouldn’t have been able to live this long with ALS if I thought every day was my last day. You have to live like you have a future.” He paused. “But you should love like it’s your last day.”

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I’ve been having a hard time finding my equilibrium since Todd’s close call with his breathing a couple weeks ago. I’m frequently weepy, thinking the end is imminent. We have gotten a few more things in order for the future, and we are saying “I love you” more.

I was up and down with Todd several times last Saturday morning after our night caregiver left at 5 a.m. I adjusted Todd’s arms, rolled him to his side, and suctioned his nose. At 7:30, he asked me to put him on his back and put on the noninvasive ventilator. I went back to sleep.

When I woke up naturally, I looked at the clock in disbelief. It was 10:30 a.m.! I hadn’t slept this late in years, and I hadn’t heard Todd call for me. I was worried. I went to check on him and was relieved to see the ventilator rhythmically filling his lungs with air.

I am trying to reconfigure my mind to absorb this new level of uncertainty. Life felt precarious with the ALS diagnosis, and even more so whenever Todd has had a cold the last few years. Now we are living with a new level of fragility.

But we still don’t know when the end will come. I know people whose ALS has progressed further than Todd’s, and they have gotten by for years using a noninvasive ventilator.

Todd is still living as though he has a future. He is planning to help our son build a computer in the coming months. They are figuring out what parts they need to order. I felt a sense of relief when they had a project in the works.

I looked at my calendar for next month when the kids have spring break and decided to be optimistic that life will be OK then. I asked Todd’s sister if she could come help take care of Todd so I could take the kids to a water park for a couple days. Plans for that future are tentative. If things don’t look stable then, we’ll cancel.

If I knew it was Todd’s last day, I wouldn’t do much. I’d sit by him and hold his hand, look at photo albums, and watch shows with him. But we can’t live like that for weeks, or months, or possibly years.

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