In the hospital complex, I sit in a room with a woman who plans to teach me how to swallow. Or, to re-teach me. I came into the world knowing how, born with the universal instinct to suckle and feed. I knew how to swallow just as I knew how to breathe. It’s just that, somewhere along the way, my body’s muscles have forgotten.
The physical therapist holds a stethoscope to my throat and listens to me sip ice water. Some time later, we move to applesauce, then to a dry and crumbling cracker. She makes notes on a clipboard, studies them.
On the other side of the plate-glass window of the physical therapy room, hang gliders swoop down from the pine-covered mountainside. Their sails are the bright neon of 1990s fashion, and it’s impossible to miss the daredevils with their spectacular, spandexed bodies. I wonder whether the location of the window is intended to be inspirational: a call to the possibilities of good health, a motivation to perform one’s exercises well and get back out there. I have an impulse to drop the blinds over the window. I’d like to occlude the mountain.
I used to grade student papers in waiting rooms, but my red pen and a sheaf of student essays invited too many comments from others—where did I teach, what grade level, did I enjoy my work. On occasions like this, I prefer to keep my own counsel. I have developed the habit of pulling out my smart phone and flipping mindlessly through applications, dissolving the minutes ahead of my appointments for which I always seem to arrive early.
I open an application called Pinterest. It’s a perfectly innocuous, time-wasting service that shows me photos of things that my friends enjoy. I scroll through images of dogs lolling on grass, of craft projects that no one I know has the time or skill to complete, of aspirational home renovation schemes. My thumb whisks the world by at a clip or a crawl; I am all-powerful on this tiniest of screens.
Scrolling through this array of images, I know I run the risk of seeing it. I know that I should stop while my mind is full of photos of captioned housecats and decorated cookies, but I scroll on. And there it is, a photo of a gorgeous, well-fed, hourglass-figured girl stepping from the ocean in a bandeau bikini. The caption that hovers below her, as though emerging from the sand, reads: “being healthy and fit is so much more important than being skinny.”
The physical therapist lifts her head from her notes to tell me that she cannot assign me any exercises. They’re very effective for most people, she says. Science has the data to prove it. Yet it’s the nature of my condition, she reminds me, that with attempts at repeated movement, my body will rush antibodies to the site where nerve meets muscle, the immune system blocking the neurotransmitters. Repeated flexing will only make my muscles weaker. We are going to focus instead, she says, on “technique.”
She shows me how to tuck my chin to my chest as I swallow. This will keep me from aspirating my food, and from sucking water down my windpipe and into my lungs. On a paper handout that has been photocopied many times over, its text grown fuzzy over time, she shows me a cross-section of the human chest, points to where food particles can land in the bronchial tree, and explains that pneumonia flourishes on their half-chewed surfaces.
She then demonstrates how to hold my head at an angle as I chew, as though I were casually glancing over my shoulder as I masticate another cracker. This posture is meant to block the weaker side of my throat and keep me from choking. It’s hard to imagine doing this at home on a regular basis, much less making a go of this chin-tuck and shoulder-glance attitude at a nice restaurant (what’s that woman looking at?) but I do as she asks.
The most important thing, she tells me, is that I don’t quit eating. Sometimes, people just give up, she says. She looks at my chart again, and asks how much weight I’ve lost in the past few months.
The product of a generation of girls who grew up with the specter of anorexia stalking our friends and siblings, I was told that “real women have curves” as though it were a mantra.
Our elders were trying. They wanted to flip the arbitrary concept of thin-body beauty on its ear. They wanted us to find self-acceptance, but when they tried to scare us with photos of undernourished bodies and with cautionary tales of the dangers of disordered eating, we learned that being skinny was one more way in which we could fail—one more way our bodies could be repellant.
With the onset of a progressive neuromuscular disease several years ago, my body’s relationship with solid food became a complicated one. I was never a curvy woman to begin with, but with each of the more feminine attributes I’ve lost, I’ve become, I am given to understand, less and less of a real woman.
I wonder at what point I will become unreal altogether.
At first, it was easy enough to cover for some of the effects of my illness under the guise of sheer clumsiness. I dropped things, I stumbled, and sometimes I garbled my words, but I was never an elegant, balletic woman. Known for knocking over glasses of water or tripping over the smallest of cracks in the sidewalk, I was happy enough to chalk my bungled movements up idiosyncrasy. For a couple of years, I could pass for a real woman.
Progressive diseases, by their nature, worsen over time. I stopped breathing now and then. Chewing was a hit-and-miss proposition. Sipping water became, at times, more trouble than it was worth; to a weakened arm, a bottle of spring water is as hard to raise as a dumbbell.
I began to lack reality. I took to baggy tops and A-line silhouettes to hide my poking collarbone, my meatless hips. I took up as much space as I could in bulky sweaters. I compensated for my diminishing reality by covering over my negative space.
As I sit in the therapy room, waiting while the therapist gathers papers, pamphlets, and documents of all sorts from the hospital’s cavernous hall, I take to my phone and scroll. I scroll almost compulsively, as if distraction with images of lovely shoes and frosted cakes and gamboling baby ducklings were the same thing as comfort.
I scroll and I see another picture, one of a woman with a muscle-bound, thong-clad butt. The caption above her grayscale image tells me what I already suspect to be true: “strong is the new sexy.”
The name of my disease translates directly from the Greek and Latin to “grave weakness.”
When the therapist is back behind her desk and I across from her, she fills the space between us with charts, and with more diagrams of the human esophagus in various states of distress and relaxation. She handwrites recommendations on jaunty yellow paper, warns me against the use of straws for sipping.
I listen to her, ask questions, nod at appropriate times.
In the window behind her, the hang gliders seem to grow as parallax plays its tricks on their gliding bodies. Their forms become more substantial as they loom closer, cresting on the wind that flows down from the mountain. They swoop close enough that I can see the distinct curves of their muscles against the pale fall sunlight.
I don’t look away. I have to admit that they are beautiful.
Rumpus original art by Mark Armstrong.