Late one November night in 2000, I drove myself to the ER at the UW Medical Center. I had left my twelve-year-old son sleeping at home. Still a single mother, I had called my boyfriend to come over and stay while I was gone. My legs had been tingling and getting progressively benumbed over the past week. The numbness started in my toes and now reached my butt and groin region, plus my toes were turning blue. I had no idea what was wrong. The weekend before I had run up the 2,400-foot Mount Constitution on an island in the Puget Sound. It had been cold on the mountain, but I hadn’t fallen or gotten frostbite. I was forty and in decent shape, was rarely ever sick, and had no primary care doctor. I worked as a nurse practitioner at a nearby community health clinic; I was used to diagnosing and treating other people’s health problems, but not my own.
“Take off all your clothes except your underwear and put them in this bag. And tie the gown in the back,” the ER nurse said, as she handed me a cotton gown and white plastic bag marked ‘University of Washington Medical Center: Patient Belongings’ in purple. Why did I wear black thong underwear to the ER? I thought, as I gazed down at my mottled blue toes.
My personal mantra at the time was, I can do this; I can do anything! I didn’t see the danger in that saying. I worked three jobs, trying to pay off school debts and save for a down payment on a house, as well as for my son’s future college education. I had been running on the tenure track, applying for and getting research grant after research grant, publishing a string of papers, collecting teaching and peer evaluations. The faculty had recently met to decide whether or not to grant me tenure. I didn’t yet know the outcome. If I did not get tenure, I would lose my main job. So there in the ER I did as I was told, stripped to my underwear, donned the gown smelling strongly of bleach, and then endured a series of tests and examinations. At some point, although I don’t remember when, a plastic hospital ID band was strapped to my left wrist over the spot where my silver bracelets had been.
Covered by a white sheet up to my chin, I was now lying flat on my back on a black plastic-encased gurney, perhaps one that has recently delivered a dead body downstairs to the morgue. Can I feel my legs? Are they still there or have they been amputated? Or is it just that they are frozen, because I’m so cold? What time is it and why are we going through all these hallways?
The air around me was cold—refrigerated morgue cold—and filled with the low murmuring of disembodied voices, accompanied by white noise whooshing of the building’s ventilation system. Overhead, flashing, blindingly bright rectangles of fluorescent ceiling lights marched along in single file. I began counting them, memorizing the pathway so I could find my way back out again. Lines of closed doors whirred past on either side. No windows. No wall clocks. I can’t feel my legs. What time is it? I tried to lift my head up off the thin pillow to look at my legs, to look for a clock, but I was too tired. Have they given me medication to knock me out?
A burly male orderly was behind my head, pushing my body on the gurney through the hallways. I could see long nose hairs in his cavernous nostrils and smell occasional wafts of stale coffee breath. He didn’t speak. As we passed people in the hallways, white-coated and blue scrub-wearing staff members, they all stopped briefly, turned sideways, backs against the walls, in order to let us pass. They furtively glanced down at my face, but their eyes always flitted away, never making eye contact.
I thought of Kafka’s Metamorphosis’ as I lay flat on that hospital gurney being wheeled through numerous hallways, then wheeled into an extra-wide elevator lined with rubber bumpers, and then upstairs to the neurology floor of the hospital and checked in by a sweet young nurse who greeted me as Dr. Ensign and I realized she had been one of my students in a health systems course taught the previous spring in a large auditorium I think I was rolled past on this gurney on my way up here—but that can’t be right. I had started thinking in run-on sentences. This young nurse, my student, handed me a tiny plastic cup filled with lilac-colored liquid. I looked at her, trying to remember if she was the sort of student I could trust to give me the right medication. Then, I swallowed the sick-sweet syrup with a metallic aftertaste. I awoke in a darkened room with a spotlight directed at my right arm, some young man thumping my veins and then drawing tube after tube of dark red blood.
After three days of hospital MRIs, X-rays, spinal taps, more blood draws, nerve-conduction tests on my legs, and totally annoying flashing light tests in my eyes, the grey-bearded senior attending neurologist appeared in my hospital room, accompanied by a fluttering group of neophyte short-white-coated medical students. He told me that the good news was that they had ruled out a spinal tumor, but that the bad news was that I had autoimmune transverse myelitis, meaning my body was allergic to itself and was causing a swelling of my lower spine.
“We’ll have to wait and see what it develops into. It can take a year or so before it progresses enough to make a definitive diagnosis,” the neurologist said, peering at me over his rectangular wire-framed glasses.
So I went home and waited. I desperately wanted a diagnosis, a unifying name for the bizarre collection of symptoms that kept sneaking up and sprouting into new signs—the concrete objective markers—and the symptoms—the soft subjective could be all in my head; could be just female hysteria. Symptoms such as my favorite: malaise, a general feeling of being unwell. Malaise, from the Old French mal= bad and aise= ease, space, elbowroom. I was in a bad space. I had not understood what it felt like to be in a body that betrayed me. I thought a diagnosis could bring me back into my body, bring me back into a good space.
The numbness slowly resolved, although my toes continued to turn blue, as did my fingers. Then, all of my joints began to swell. I spent the next year going to various specialists and sub-specialists, one of whom drew fourteen tubes of blood all in one visit, in order to run a panel of obscure and insanely expensive tests, of which the results were inconclusive. Another specialist drew my blood, extracted the serum and injected it into my forearm in order to measure my body’s allergic reaction—to myself. I tried complementary medicine and went to an acupuncturist who had been an internal medicine physician but had burned out on working within the medical system. He told me the story of his final days in medicine: “I told the administration that I wouldn’t take it anymore and I walked out,” he said. “Now don’t move because I’m going very close to your heart,” he added as he jammed a large needle into the middle of my sternum. A large purple bruise bloomed on my chest for weeks afterwards, taking my mind off my blue toes and swollen joints.
I was grateful for my university-sponsored health insurance, but was tired of all the medical encounters that seemed only to lead to more medical encounters. What I dubbed my ‘mystery illness’ morphed into a diagnosis of mixed connective tissue disorder (MCTD), which is really something that can’t make up its mind between being lupus, or rheumatoid arthritis, or the totally freaky-scary scleroderma, where your skin and internal organs thicken and petrify while you are still alive. MCTD is a rare autoimmune disorder that attacks the fibers providing the framework and support for the body. Rare, as in I’m special? Or as in I’m cursed? I thought, as a specialist explained my diagnosis, my dis-ease, my mal-aise. As he told me my diagnosis, my world closed in, like the bedroom doors closing on Kafka’s man-turned-beetle.
Today my medical chart still lists a diagnosis of MCTD, but none of the freaky-scary petrifying stuff has occurred. I no longer run the medical circuit in search of more tests, more tubes of blood, more diagnoses, more jabs to the heart, more promises of a cure. I live with it as you would live with a curmudgeonly, truth-telling friend. It tells me when I’m falling back into the inhuman I can do it; I can do anything! mindset. I listen to my body, even as it continues to get lost in the impossible hallways at work. Most of the time, I embrace the stalactites, the career limbo of nursing ambivalence, and the bewildering staircases. Recently, I cleaned out my university office and recycled all my papers, academic books, and grant reports. I prepared to slow down my tenure track conveyor belt, step into a sabbatical, search for that tranquil courtyard that doesn’t exist on any map.
I chose a soft, calming color for the walls of my office. Then, after the maintenance crew had re-painted the walls, I realized I had picked a version of hospital green. I’ve decided to live with it, and to see what fine details of life it reveals.
It is a year or so since I wrote this essay. My office at the University of Washington is painted the same hospital green. While on sabbatical last year I continued to search for that tranquil courtyard and I am happy to report that I found it—outside my own home. I have survived another (and last) academic conveyor belt bid and have been promoted to full professor. And it is based on this sort of ‘real’ (to me) writing, on public scholarship, on my work in health humanities and social justice. My UW office is now filled with shredded promotion material in preparation for making a paper mache academic mask that I will hang on my hospital green office wall. I firmly believe it is these sorts of things that are helping keep me sane and healthy.