Holding on to possibility while living with ALS
As we prepare for a new year, I find hope in uncertainty
I feel a sense of accomplishment as this year ends. We made it. My husband, Todd, has hung on, with much effort to keep his lungs clear and filled with air, and we’ve kept persevering even as his ALS keeps progressing.
Todd hasn’t had his breathing tested since December 2021, just before he got his noninvasive ventilator, and so we don’t know exactly what his forced vital capacity (FVC) score would be today. His lung function is too weak to even be tested, but if I had to estimate based on his prior progression, his FVC score would now be close to zero. But he’s still holding on, and he doesn’t struggle to breathe as long as he has his noninvasive ventilator on and his lungs aren’t congested.
It’s been a long road that may be nearing the end, or we may have miles to go. We are in the position of figuring out how to keep our “caregiving machine” going for potentially another year or two.
A sliver of possibility
It’s tough to manage this level of care with limited financial resources. Will we be able to find nighttime caregivers so I can sleep? Will people continue to donate to help pay for that care? It’s another uncertainty, along with all the other unknowns that accompany life with ALS.
As difficult as ALS life is, I can see good in the rearview mirror of 2025.
Our children are growing into independent young adults. We helped our daughter find her first car. Our son purchased an old snowmobile, and he’s been working on getting it running. I started a small business that has been a fun, creative outlet for both Todd and me. We’ve enjoyed visits with friends and family. We’ve found new and old shows to watch together in the evenings while I run on the elliptical in Todd’s office. These are good things in the midst of the hard.
For the last decade, Todd has made a photo memory book of the past year for my Christmas gift. I look forward to it every year. He starts working on it after Thanksgiving and orders it the first week of December so it arrives in time for Christmas. He was working on it last week while I attended my daughter’s college dance performance, and after the show, I texted Todd a few pictures from the event.
Todd replied, “I just ordered this year’s book. I’ll need to include these in next year’s book.”
Next year’s book. Will there be a next year’s book? I had to wonder.
I don’t know. Life is so uncertain, but somehow we got through this year. Todd defied the odds. So, is it possible? Maybe.
Hope doesn’t always look like confidence. Sometimes it’s just the sliver of not knowing, a space where possibility still lives.
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.
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