How we’re living in the middle chapters of ALS
Life feels like being in the middle of a long story with no resolution
It’s hard to live in limbo with the slow but relentless progression of my husband Todd’s ALS.
A couple years after Todd was diagnosed, he went on permanent disability from his work. He could still speak and had the time, so he visited my great-uncle nearly every day in a long-term care facility to read to him.
Halfway through Herman Melville’s “Moby-Dick,” Uncle Carl passed away. Todd tried to plow through the rest of the whaling chapters but couldn’t finish the book. The middle was too boring. A few years later, after he lost his ability to walk and had even more time on his hands, he got the Kindle version and made another attempt to read it.
“I think that Melville went whaling and took a lot of notes,” Todd theorized, “and rather than using some of those notes to write a story, he fell in love with the words and included everything.”
Again, Todd couldn’t make it through the excruciating details in the long middle chapters, so he skipped to the end.
My own life feels like being in the middle of a long story with no resolution. For nearly 15 years, a cloud of my husband’s terminal illness has hung over my head, and we’ve dealt with ongoing losses of his progressive disability and missed out on life experiences that healthy friends share on social media. I’m exhausted both physically and mentally. I’m tired, and I don’t know how long we will be here in this space.
Perhaps that’s why many people who have been part of our support system move on with their lives; after months turn to years, those who want to stick around are few and far between.
The other day, I ran into a longtime acquaintance at the grocery store. We exchanged pleasantries and gave updates on our kids. And then came the other question I hear whenever I run into someone who hasn’t seen me in a while.
“How is Todd?”
“He’s still hanging in there,” I said.
The acquaintance asked if Todd’s condition was stable. I considered the question. “No,” I said. “The disease keeps progressing.”
Todd’s ALS has been slowly progressing, but it has never stopped.
I forget when exactly he began having trouble with his lungs filling with mucus, but we made a YouTube video showing me clearing his lungs with a manual-assist cough five years ago, so I know it’s been longer than that. That was when we began to feel like we were on the edge of death, with weekly life-threatening moments when I rush to clear his lungs so he can breathe. No, I wouldn’t describe his health as stable.
After surviving a recent respiratory illness, Todd’s lungs are even weaker, and the time he can be off his ventilator for meals is shorter, but his equipment is keeping him alive — for now.
The acquaintance sympathetically commented that we’re living in a really long season, to which I nodded. The middle chapters of our story are really long.
Psychologists talk about post-traumatic stress and post-traumatic growth, but there’s no “post” here yet. We live with ongoing traumatic stress.
I don’t want to skip to the end of this story, because barring a cure or a miracle, the end means I will have lost Todd. But staying in this undefined space is unsettling, too.
If the middle of “Moby-Dick” is so long and boring, I wondered what makes it a classic. I Googled it and found an article by Shoki Yashiro titled “Moby Dick Isn’t Boring. You Just Didn’t Get It.”
I shared Yashiro’s perspective with Todd. “This guy says that people who say the middle of ‘Moby-Dick’ is boring are missing the point.”
“What’s the point? That life is suffering?” Todd chuckled.
“He says there’s a depth to it,” I countered.
“Of course there is. They are in the middle of the ocean.”
Yashiro says that the “boring chapters” are the point of the book. “You read Moby Dick because it’s the magnum opus of one of the greatest writers this country has ever seen, and because it’s a funny, weird, subversive, cryptic, blasphemous examination of man’s relentless struggle to find (and, in Ahab’s case, to kill) God.”
So what about this middle that we are in? Sometimes I can find beauty in these mundane and difficult chapters of our life. Even when I don’t see the beauty, I suppose learning to live with uncertainty and suffering is part of the human experience.
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.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.