Over a year ago, I wrote a piece here called “Old Friend,” examining the longest relationship of my adult life—with multiple sclerosis. Having just passed our 28th anniversary together, I’m beginning to understand the ways in which MS has gradually, silently eroded my friendships with people I hold dear.
I am no longer a good friend; no longer do I have what it takes. If you lean on me, I just might fall. Literally and figuratively...
People who don’t read poetry often avoid it because it’s “inaccessible,” confusing, compressed, and in need of very focused attention. They want to figure out the puzzle, rather than let the poem wash over them, ask it questions, and read it again. To me, poetry is far more accessible than many novels; of course, it’s what I do and what I’ve studied, but poetry also provides the reader with a burst of self-sustaining energy so powerful that it blows me away. Poetry is immediate. Cognitively, I can pay attention to it without getting lost or forgetting plot points.
Poetry is also easier to read for me, physically, than prose. My eye doesn’t need to move as much in order to keep up. What is inaccessible to most readers offers me access to the world of words, to my world, where poetic lines serve as a form of automatic doors, or elevators, or accessible parking spaces, ramps, lowered countertops. It invites me to experience it without discomfort. Poetry shapes itself around my needs, unless the page is bright white or the print is incredibly small, or the pages so thin that the letters swirl together, backwards and forwards.
The line I stagger, the line many people with relapsing-remitting multiple sclerosis (RRMS) stagger, walk, or straddle, wavers over time, from time to time. It jumps, rolls. It scribbles.Line 1
In the exam room, we walk the line, heel-toe, if we can. When we can. The line does not reveal itself, nor does it reveal the effort exerted to trace its trajectory. We imagine the line there before us, a tightrope. Someone is usually there to catch us, white sleeved safety net, in case we stumble...
When the man I love moved from England in order to marry me in the US, it was our Plan B. Plan A was for me to get into University of East Anglia’s selective PhD program in creative writing (which I did), and to move to England (which I didn’t). I couldn’t afford the tuition. My father faced a similar situation after college. He wanted to study acting at the University of Bristol, but neither he nor his parents could afford it. Plan B happened, and he met my mother, and then a couple years later, I happened, happily.
Plan B—or C, or D—is often the silver lining of Plan A’s dark cloud; adaptation and flexibility supply the plan’s sheen. I’ve been marveling lately at how sheen is captured in art, precisely which layers of color work together to create a mirror finish, because I’ve been trying to capture it, too. For the past year until it closed down, I was drawing nearly every day on DrawQuest, a fabulous iPad app that provided members with daily drawing prompts to spur creativity. Interpreting DrawQuest prompts gave me a sense of calm and focused attention that a million brain games were not accomplishing; I noticed other aspects of my cognition improve, such as problem solving—and I felt less bewildered by life’s scattering rush...
In my college-level Medicine and Society classes I like to introduce my students to the ways language can alter our perception of illness and disability, how terms like “suffering” or “struggling” or “despite/ battling an illness” characterize diseases in ways that make them seem unbearable, not worth living through. After 27 years living with multiple sclerosis, I can safely say just how unproductive that kind of thinking is. There is a lot more living to do.
To demonstrate the tight weave of language with common, cultural perceptions of affliction, I divide the class in half and give each group a different written interpretation of Saint Lydwina of Schiedam, patron saint of invalids and figure skaters, and quite possibly the first recorded case of multiple sclerosis. She lived in Holland between 1380 and 1433. Her MS-like symptoms began shortly after a skating accident when she was a teenager. One account of her story comes from her hagiography in Butler’s Lives of the Saints. The other comes from a study conducted in 1979 by neurologist R. Medaer, originally published in Acta Neurol Scandinav. In my class exercise, each group of students reads one account of Lydwina’s life, discusses it, and then sends someone up to the dry-erase board to draw a picture of Lydwina based upon the description they read. One drawing is usually far more plain than the other, which sometimes necessitates the addition of a red marker to show blood...
I’ll admit it: Contrary to my usual positive, inquisitive approach to multiple sclerosis, I cried last December when my MS symptoms flared. I cried long and hard.
I remember returning home from work, my left leg stiff and weak, stride slowed, with nobody home but the dog and a very demanding cat, and it just poured out of me, the kind of sobbing thrust from the gut, deep and low. It kept coming and coming. I let it. I cried because nobody could hear me. I cried because I felt I hadn’t appreciated walking enough when I had the ability. I cried because I felt responsible for all of it.
“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.
I’ve been thinking a lot lately about my Auntie Rose. She owned a small, second-hand clothing store in Laguna Beach, where my mother shopped and worked part-time. I would get off the school bus early, walk down the hill to the shop, and stay there until closing time, when sometimes I was allowed to push around the fascinating, self-propelled Hoover. We went there often to visit with Rose. She and my mother would sit and chat, look at the new arrivals. At the age of ten I drew up adoption papers, illustrated and sealed with gold stars, to let Rose know that I was hereby adopting her as my aunt. She accepted.
We moved away when I was thirteen, returning to Laguna for monthly medical or orthodontic check-ups. Before heading back home, we’d cap off the day in Rose’s shop. While the adults chatted I would investigate the “Funky Closet,” a wardrobe bursting with lavish or eccentric clothes, feather boas, hats, ludicrously high heeled shoes and funky boots. On one occasion Aunt Rose held back a beaded sweater for me. I was fourteen and quite smitten with vintage clothing. On a knit field of navy blue, reflective and luminous strawberries were arranged in clusters, attached to yellow ribbon stems. Yellow ribbon trimmed the cuffs and collar, and the buttons were tight balls of rhinestone. Rose said I could keep it, no charge.
“I feel pain when I see young people in wheelchairs.”
This statement appeared on an empathy test given to medical students, the Balanced Emotional Empathy Scale (BEES), presented at a Medicine and Writing conference I attended last year. The test-taker was to assign each statement with a number on a scale from +4 (highly agree) to -4 (highly disagree). This was presented as a reliable assessment of empathy.
I wrote -4 next to the statement. I do not feel pain when I see young people in wheelchairs. Nor do I feel pain when I see one using a cane or a walker/rollator. I feel a sense of kinship, compassion, respect; I have been using a cane off and on since my mid-20s, and I know how helpful it can be. I know wheelchairs aren’t objects to which people are bound; they offer freedom when legs won’t carry people where they need to go.
Shortly after my initial diagnosis at 17, I received two cards: a glossy membership to the National Multiple Sclerosis Society with my name printed on it, and a yellow card with no gloss, no lamination, printed on card stock one step above construction paper. Temporary, like some insurance cards, but for a lifelong illness.
In small black letters it proclaimed that the bearer of the card had multiple sclerosis, a disease which can manifest itself in a number of forms: slurred speech, unsteady balance, erratic gait when walking, and slowed motor coordination. These were not to be confused, the card instructed, with intoxication. There was a space on the card to fill in my name, and another for the doctor's signature. His office had typed his name, floating loose in yellow space. I was to carry the card with me at all times from that day forward.