Life With ALS Is Hard, and Sometimes the Little Things Are Too Much
Sometimes little things push me over the edge.
One morning last week, I was already cranky because I had burnt the oatmeal. The smell followed me, lingering in my hair as I drove the kids to school. After I dropped them off, I stopped by a store on the way home, hoping to grab chicken and sage breakfast sausages for me and artisan sourdough bread for Todd.
In the parking lot, I put on my mask and walked toward the entrance, where employees were unloading a delivery truck. One of the men told me they were closed and wouldn’t open for several hours. It had been months since I had stopped by that early in the day, and I hadn’t remembered that the hours had changed. I didn’t have time to run to another store on the other side of town.
I got back in my car, and the tears flowed as I made my way up the hill toward home. I breathed in the smell of my burnt-oatmeal hair and sobbed. Crying turned to wailing, and I was aware that I wasn’t crying about my hair or the closed store. Those little things were just conduits to deeper pain.
I cried because my husband, Todd, has ALS. He’s paralyzed. His condition is worsening. His chest muscles continue to weaken, and he can’t clear mucus from his lungs. I cried because life with ALS is hard, and it only gets harder.
When I got home, I dried my tears. Todd called me to get him out of bed. His body ached from a long, restless night.
I washed him up and transferred him into his wheelchair. He followed me to the kitchen, and I made him coffee. Before it had finished brewing, he had fallen asleep with his head down.
While he napped, I left the burnt oatmeal pot to soak and cleaned the kitchen. I made breakfast, and I listened to “Everything Happens, A Podcast With Kate Bowler.”
Bowler, one of my favorite authors, interviewed Anne Lamott, another of my favorite authors. Both of these writers weave words with beauty that feeds my soul, and neither sugarcoats the hardness of life.
Lamott recounted how her best friend had lost her 23-year-old son. As her son was dying, the grieving mother told her Alcoholics Anonymous sponsor that she was terrified. “I’m afraid I can’t do this,” she said.
The sponsor replied, “Well, you’re doing it.”
That statement resonated with me, because often I think I don’t know how to do life with Todd’s ALS. There’s no manual about how to be an ALS spouse and caregiver. I don’t know how to help our kids deal with an uncertain future — or rather a future that is foreseeable, but difficult. I don’t know how to face such a disheartening future myself. But somehow I am doing it.
Somehow Todd and I have been living with this for more than a decade.
I don’t know why I think I should be able to handle this well, as if it’s a reasonable expectation I have of myself. How would I know how to deal with terminal illness and the impending death of my beloved husband? How could I possibly master suffering and conquer grief?
Life with ALS is hard. It’s sad and lonely, and the emotions will inevitably overwhelm me. So, I’m really not overreacting to minor inconveniences — I’m using them as invitations to take time to cry. I feel better when I do.
“There’s a reason God made tears,” my character Grandma Lou said in my novel “Snow Country.” She had lived with her husband’s progressive illness for years, so she knew. I guess I knew it, too, because I wrote the line after I had first heard it from my cousin, whose husband had Huntington’s disease. Last week, I had to learn the lesson again.
We live and we grieve. Sometimes we cry over little things, but we also appreciate the little things.
Todd woke from his nap. I poured his coffee, and between bites of my omelet, I fed him egg and ham on an English muffin.
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