On Twitter
The devastation, the tumult, the stress and uncertainty of having a severe chronic illness that’s rendered you bedridden for years. What does one do? I routinely seek out connection online, particularly social media, due to the isolation of being alone in a room all day, which at times is intolerable.
On this particular day, I was on Twitter, responding to the accounts I found most interesting and amusing. American literary icon Joyce Carol Oates was on my radar. She’s prolific on Twitter. At eighty-six, she’s as sharp as a tack and very, very opinionated.
A small blue, yellow, and white painting of the finish line at a race by an unknown artist hangs on the wall above my bed. My mother got it at a flea market and thought it seemed fitting because of my journey. But whether the finish line symbolizes recovery from chronic illness or the end of a life is not for me to say.
Three plants sit in my room to give it flair — a large Dracaena gifted to me by a rich American friend in Sweden, and the other two, a snake plant and a small succulent, from my mother, who seems to have a present or home-cooked meal for me every time she visits.
I’d clicked on Joyce’s post containing a link to her flash-fiction piece called “Hospice/Honeymoon.” Eloquently written and vivid prose, the hallmark of Ms. Oates’ writing, the fictional story is about the final days of her late husband Charles Gross, a psychologist and neuroscientist, and the topic of caregiving.
I, of course, could relate to the experience since my wife is my caregiver. So I replied to her post:
“Great piece, Joyce,” I said. “My wife has been my caretaker for nine years of chronic illness, seven of them bedridden. And it is no honeymoon for her, or for me.”
“Well, it is,” Joyce replied. “Just an unexpected kind of honeymoon. But it is for both, it is not solitary.”
For those unfamiliar with Ms. Oates, she is considered by some to be America’s greatest living writer, having penned the novel “Blonde,” a fictionalized biography of Marilyn Monroe, which was turned into the 2022 eponymous Hollywood movie. But more famously, perhaps, she is known for her 1966 short story “Where Are You Going, Where Have You Been?”
At first, I dismissed the comment, thinking nothing of it. But then I let it sink in and eventually found Joyce’s words to be oddly comforting, even life-affirming. I would most certainly not want to be doing this alone.
My wife had decided a long time ago that she would stick with me through this ordeal. And though many times she has wanted to quit, she has always hung in there, providing me with so many emotional benefits, as I fight for my survival on some days.
Community, connection, leaning on the shoulders of the people you love — this is how one endures great, prolonged suffering, suffering that often feels meaningless.
I thank Joyce Carol Oates for giving me her perspective. I thank her for being thoughtful enough to offer me a few kind words. It made that moment in my day less painful, less ordinary.