A smaller life
Cognitive decline from MS won’t keep me from writing.
by Diane Hammond
I have brain damage. It’s not something I talk about. It’s not something that comes up naturally in casual conversation. Few colleagues at my final PR job know it’s why I quit. I say I’m retired now, but it’s not true: A year ago, I qualified for disability.
In 1992, I was diagnosed with multiple sclerosis — the relapsing-remitting form, the one you want. The weird stuff comes, but more important, it also goes, often within six weeks. Although it was unnerving at first, this rarely rose above the level of inconvenience: serially, speech and swallowing difficulties, leg weakness, bladder overactivity, an inability to accurately sense heat and cold, head and hand tremors. None of this significantly changed the way I worked or lived or cherished my husband and raised our daughter. Or wrote.
When thinking about my MS, I always described myself as lucky. But about four years ago, my memory began to fail me.
I no longer recognized the faces of people I’d recently met and then, to my embarrassment, met again as though for the first time. I lost pieces of stories I was told — whose grown children lived in San Francisco now, who was born and raised in Iowa, whose husband worked at 3M or Target or as an IT guy at a local hospital. And I’d always been good at that, remembering elaborate biographies and complicated, up-to-the-minute dramas unfolding in real time.
I became increasingly disorganized. I lost track of what I was doing in the middle of doing it. I had trouble holding onto new information and skills. Switching between different graphics software programs became agonizing.
I could only handle one task at a time, couldn’t focus well enough to absorb complex reading material. I was physically clumsier. My attention span was shot.
Thankfully, at the time I lived in Minnesota, home of the renowned Mayo Clinic. I reported there for an intensive three-day neurological workup, including a four-hour neuropsychological evaluation I hope never to repeat. I’d had a couple of much less in-depth exams done in past years, so I was prepared for some of what I’d be asked to do. Unlike those times, I didn’t cry as I failed at task after task. Look at this picture. Now look at this one. What’s different? Recreate this drawing. Listen to this story and repeat it back. Here’s a list of words you’ll be asked to recall later. Put these pins into those holes. Take these shapes and assemble them to look like this shape. Define these words. Count backwards by sevens. And so on.
A day later, sitting in the coordinating neurologist’s office, my husband and I heard one side of a conversation that wasn’t promising: Evidently, the neuropsychologist was looking at preliminary results of my tests and was startled to find that I’d scored in the bottom fourth percentile for analytical and quantitative functionality, but in the 99th for verbal function. Well, our doctor said dryly, she is a writer.
From there, we detoured into the possibility that my cognitive decline was not a function of my MS at all, but early-onset Alzheimer’s disease, ruled out with merciful swiftness by a spinal tap that failed to find Alzheimer’s characteristic tau plaques. No, the good news — and by then, relatively speaking, it was good news — was that MS lesions in my brain were the culprits. A few weeks later, my detailed report arrived in the mail. To no one’s surprise, my overall scores were bad. I had mild brain atrophy. I had impaired fine motor skills and visual memory impairment. I had attention deficits, and so on. My intellect, however, was still intact.
What do you do with that, besides thank the gods? I don’t read as much as I used to. I write in narrative bites I can hold in my mind long enough to get them down — usually about our new puppy, Tansy, and the smaller life I live now. I love this new form, and I love our dogs, and I love my life with my husband, Nolan; enriched by my daughter, Kerry, and son-in-law, Dalton; by my sister, Laurie; by my mother, friends and neighbors.
Yes, there are times when I miss my old brain. I miss my ability to think continuous, complex thoughts; to multi-task and recognize the faces of people I don’t know well and to hold visual images in my mind. Each day, I solve an online jigsaw puzzle as an exercise to keep my brain limber and, hopefully, to forge new connections and strengthen old ones. I choose puzzles with interesting colors and textures, since I can’t retain the image that I’m trying to reassemble.
Unlike the old days, I no longer have relapsing-remitting MS, but have segued into the disease’s secondary progressive form, meaning any new disability is mine for good. I’m hopeful that, like the rest of my MS history, my progression continues to be slow and in ways I can compensate for.
I don’t know whether I’ll ever write another book-length manuscript. What I do know is that I’ll always write, and I’ll always take joy in it, whatever the form and no matter how narrow the subject. How many can say that? I am still among the lucky ones. I know I always will be.