Editor’s note: Our IBD columnist, Judy Walters, will have a new book out Tuesday in which the central character has multiple sclerosis (MS). Here, she recalls how MS affected her own family during her childhood.
I was only 10 when my grandmother died, but I remember so much about her. I remember that our family had dinner every Sunday at my grandparents’ house. I recall she used a wheelchair to get around, and that the seat was flimsy and even I, as a young child, made it jiggle as I sat down on it, trying to make it go. (I was not successful.)
She couldn’t talk, but she laughed silently at my father’s corny jokes. I remember that she looked just like my mother and, because I look just like my mother, I looked just like my grandmother, too. We had the same fine, jet black hair. She wore hers back with a headband. My mother kept mine short so as not to have to worry about style.
Starting when I was about 8, my grandmother was more in the hospital than out. We ate McDonald’s on the nights my mother was at the hospital with her, and I found that exciting, because otherwise we never ate out.
Soon she could no longer come to the dinner table on those Sunday nights, even though the rest of us still did. She could no longer sit up. She stayed on the couch, the only place I ever saw her anymore, practically the only place I’d seen her my entire life.
My mother tried to get the four of us kids to sit next to her on the couch so she could take a picture. I remember that I was scared of my grandmother, who had no voice, who laughed silently, who couldn’t hold me like other kids’ grandparents, and so I hid my face and turned away from the camera. And then one January day, my mother got the call that my grandmother had died at the age of 64.
My grandmother had MS. She got sick when my mother was 10 and died when I was 10. There is some symmetry to that, as though we could bookend the experience and make it whole.
But you can’t do that with MS. With any chronic illness. My mother was only 33 when her mother died, and she’d spent most of her teen years and early 20s taking care of her. It was the 1950s and ’60s, and there were no treatments. MS was seen as a path toward death. Something inevitable. It was just a matter of how long it would take.
Fast forward 22 years later. I was spending a lot of time in doctors’ offices with a set of symptoms different than, but a strange reminder of, my grandmother’s. I was losing weight, unable to eat a lot, in pain. I was raising two young daughters. They were 6 and 3 and didn’t understand why Mommy was in bed a lot.
I was diagnosed with Crohn’s disease, which, like MS, is an autoimmune condition. It upends your world, making you weak and tired, unable to eat, too sick to do anything. In fact, there is some belief in the medical world that MS and Crohn’s disease could be related. So, in a sense, I inherited so much from my grandmother: the jet black hair, of course, and the autoimmune disease that would change our lives, and the course of our children’s lives, forever.
It’s been 16 years since my diagnosis, and Crohn’s has changed everything. I try to work around it, but sometimes it’s impossible. People understand so little about chronic disease. I want them to understand.
So. I wrote a novel about it. “A Million Ordinary Days” is the story of Allison Wheeler, a 53-year-old mother of two, with a demanding career, an ex-husband, and a new love interest. She happens to have MS. And she doesn’t want anyone to see it. So, she works hard to put it aside. But she can’t, not really. In my novel, you’ll find a woman full of determination and guts and strength. But you’ll also find a vulnerable woman, a woman wanting what’s best for herself and her family. Like my grandmother did. Like I do. Like we all do.
“A Million Ordinary Days” by Judy Mollen Walters is available starting March 14 on Amazon, paperback $14.99, Kindle edition $4.99.
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