We all breathe.
From our first incoherent cry to our last rasping breath, we breathe over twenty thousand times each day.
We breathe so often that we take it for granted, until the moments when our breath is taken away.
I thought I knew what it was to have my breath taken away. By love. By art. By exercise. But everything changed this year.
In June of 2020, Allison and I were visiting a friend on the Pennsylvania border when her mother invited her to a surprise lunch. I spent that day helping to homeschool two kids and occasionally losing my breath as I chased them repeatedly around the farmhouse, up the hill to the barn, and around through the winding paths of the nine acres up beyond the chicken yard.
I lost my breath again that afternoon when Allison got James and me onto a conference call to tell us that her father, who had been growing mysteriously weaker for a few months, had been diagnosed with ALS.
“We are moving to Maryland. I need to help take care of him. I want the kids to have memories of him,” she said. No, she insisted. Even as the numbers didn’t line up, jobs interfered, and COVID overshadowed everything, Allison remained steadfast that she needed to be with her parents and the kids needed time with her grandfather, so James and I did what we could to make it happen.
Which is how we came to live part time in The Mothership.
As the weather grew colder and Rich’s health declined, we found ourselves moving from the role of frequently visiting family members to full time caretakers. Allison, especially, did everything she could to lift the load from her mother, who was struggling under the dual roles of nurse and grieving wife. As time went on, I began to take on some of the care as well.
Feeding times. Medications. Breathing machines.
It was the breathing that was the hardest.
ALS destroys muscles and one of the most important muscles in the human body is the diaphragm. Twenty thousand plus times day this muscle pulls and pushes the lungs, forcing air in and out. For Rich, the diaphragm began to weaken within a few months of his diagnosis. Chest muscles. Diaphragm. Throat, tongue, and lips… all began to deteriorate.
When you can’t work your throat or push your lungs to cough, phlegm begins to build up. It burbles in the throat, oozes down into the lungs, and becomes lodged. We’ve all seen the labels on the side of five gallon buckets, warning that infants can drown in a couple inches of water. For the last few months, Rich fought a daily struggle against the tablespoons of mucous which threatened to drown him.
He needed to breathe.
We would try to help using a cough assist machine. If you’ve never seen a cough assist, simply imagine a little white box with a few buttons on the front and a face mask coming to the side on a long hose, not unlike a vacuum cleaner. Twiddle a few settings, press a button, and this hellish Dust Buster forces air down the trachea at sixty miles an hour, forcibly inflating the lungs for about five seconds before slamming into reverse. Then the cough assist literally sucks the air from the patient’s lungs, often pulling with it a wad of thick yellow mucous.
Repeat until they can’t take it anymore or you’ve done twenty breaths, whichever comes first.
Repeat again a few minutes or hours later, depending on how much drawing a breath feels like gargling.
By the end, Rich was using a BiPAP machine for much of the day, essentially treating it as an at-home ventilator. The machine whirred and clicked and hissed all day and night, breathing for him. It made him hard to understand, as every weakened syllable had to be forced from his lips through the storm of air which sustained him.
Eventually only Allison and I could make out what he meant most of the time, and that was just because she has experience talking with elderly folks who struggle to be heard and I have spent years trying to understand the discoherent rambles of adolescents. Still, he often used his few spare breaths to crack jokes. The last one I heard came a few days before the end, when he spent nearly ten minutes blinking and nodding and repeating short phrases as if conveying a terribly important message about his health, until it became clear that he was joking that, yes, he should sleep in his mobility chair so that his wife didn’t smother him with a hug in the middle of the night.
We all laughed, him included… but the thought that sleeping with one’s partner could turn from a joy to a danger was more than a joke.
He used every breath he had.
He fought for each and every one.
Until there was no more breathing to be done.
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[…] man I cared about a lot died from ALS on Sunday morning. I wrote about it as best I could over on the family blog, but even as I share this story I know that I’m edging around parts of the experience. […]