Despite being paralyzed by ALS, my husband doesn’t dwell on the disease
When we have company over, he prefers to discuss topics other than his health
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My husband, Todd, and I were having a discussion with a visitor in which our guest told us about his back pain and trouble sleeping. “You know what you should do?” Todd began. “Instead of getting out of bed, hire nighttime help, and they can roll you to your side and run a massage gun on your back until you fall back asleep.”
The absurdity of someone acquiring the intensive care my paralyzed husband needs as though it were a luxury hotel service made us all laugh.
“And you wouldn’t even need to get out of bed to go to the bathroom,” he added.
Turning and repositioning, using a massage gun on contracted muscles and tight joints, personal care, and help toileting are things Todd depends on now that he is completely paralyzed below the neck.
I previously wrote about how dark humor regarding his terminal illness helps us cope, but for the most part, Todd doesn’t dwell on his disease. He most enjoys company when we discuss topics other than his health, from their lives to current events or theology.
But it wasn’t always that way.
In our memoir “Heavy,” about our first year with ALS, Todd wrote about obsessing over his condition. He wrote about how when he had gotten LASIK surgery his eyes were not perfectly balanced. The doctor told him they were only slightly different and he was going to drive himself nuts by obsessing over it. He took the doctor’s advice to try to keep both eyes open all the time, or both closed. It worked and he quit thinking about his vision.
He then reflected on his recent ALS diagnosis. “Maybe that would work for some disabilities. But there will come a time when my disability will become so debilitating that I cannot imagine not thinking about it,” he wrote.
But 16 years later, that time of always thinking about it hasn’t come. One might think that with his level of disability, ALS would consume Todd’s thoughts. In reality, the disease caused him more emotional angst during that first year, when all he had was a weak arm.
Occasionally, Todd aspirates while eating, and we pause to turn his noninvasive ventilator to a stronger setting, tilt and recline his chair, and I press on his abdomen while he tries to expel food and phlegm from his windpipe.
He thanks me, I set him back up, and we pick up the conversation as if nothing happened.
Todd might go on to tell our son about a home maintenance or improvement project he’s been thinking about: “I’ve figured out what we need to do — and by we, I mean you,” he’ll add with a twinkle in his eye.
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