Never Say Never

“I could never do that” is a phrase with which I have become closely acquainted, at times uttered by devoted friends and family in response to the limitations multiple sclerosis has placed on my activities and spaces—giving myself injections, receiving IV steroids, quitting reading, avoiding stairs, cutting back on work, avoiding heat . . . “I could never” is an unintended barb, like a burr that gets caught on a cat’s fur and burrows deeper. But when that burr nestles into my thoughts, prickling my mind when I least expect it, I turn it over and over, tangling everything. I come up with arguments against it, nobody listening but myself: MS is not a choice but something that happens in my body, so there is no way to live differently than to change the spaces I live in, the way I read, exercise and work.
If someone were to say to me, as people have, “I could never be a vegetarian,” which I am, I would understand. It’s a choice. The fact of MS, however, is not up to you. How you respond to it, though, is. My response has generally been to take my medicine and listen to my body, and to alter my life accordingly.
And here I go, turning the burr a little deeper.  
“You see, I could never do that. I love reading too much,” was a friend’s response when I told her how the optic neuritis (ON) I experienced at the end of my PhD coursework necessitated that I stop reading for a year. I couldn’t read most print, and even large print was challenging and caused pain.
During that rough period with ON, I listened to audio books and people read to me. I learned a different way of paying attention, by ear rather than by eye. I retrained my brain. To this day, reading a long book still wears my eye out to the point of pain, and I limit my reading to print that is larger than what you find in most trade paperbacks.
Like my friend, I loved reading, too, and still find pleasure in books, but not the same books, and not in the same way. I find richness in the use of language found in shorter works with larger print, and if a small-print book is available as an e-book, all the better. I adjusted.
“I could never live in a house without stairs,” my mother-in-law once said. “I no longer can,” was my immediate thought, in response. I held my tongue. She didn’t intend any harm, after all. My living space has descended over time. I slid from two-story to single-story dwelling over the course of 10 years. There are 4 steps to climb with a rail to reach my porch, and someday that may also be too much. Further adjustments. Before more damage is done.
In order to endure Houston’s heat with MS, I need central air conditioning and rarely go outdoors in summer. I find myself thinking, “I could never live in a house with stairs. I could never live in a house without central A/C. Another kind of never, out of perceived impossibility rather than preference.
Sometimes, mercifully, impossibility withers. This summer my husband and I traveled to England to visit with his family, staying with his mother in her two-story home. There is no air conditioning; England is rarely warm enough to require it.  While we were there it was exceptionally warm, and there were stairs to climb: my two nevers. How would I endure both heat and stairs? I worried my MS symptoms would worsen. To my surprise, I learned the pleasure of dry outdoor breezes. I opened windows and doors. I cooled off in the sea. And my bum leg grew stronger from my slow, careful stair climbing. 
13 Appreciate this

Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit