On the Sunday night after my overdose, when I was certain no one would be there to answer, I called my internist’s office. I styled my voice to sound casual and perky, evoking a 1950s receptionist. “Just to let you know, I had a seizure.” I told him I was taking myself off the medications he’d recently prescribed, the combination that had caused the overdose, then hung up.
Dr. T. and his nurses phoned my home and office every day for the next week, leaving messages that increased in their urgency but varied little in their content: “Call our office immediately.” Lawsuit was the unspoken subtext. The tone, however, was commanding, as if I were the impossible patient and he the earnest doc. I doodled on a nearby memo pad, satisfied, while I listened to these daily messages. I would wait and make them wait. I would talk to them when I pleased, calmly and confidently. I’d been a dutiful patient too long.
My lungs had troubled me since birth, wheezing to slow me down or seizing up to send me to the emergency room. When I was an adolescent, adult doses of certain bronchodilators had left me anxious and paranoid. For a year I was convinced I had lice. I would scrape my scalp, pull out my hair strand by strand for examination, and compel my mother to check me repeatedly, even waking her in the night to do so. After one emergency room visit and a fresh batch of prescriptions, I began to hallucinate. Worms corkscrewed out of my flesh, walls melted, and just beyond my reach purple and pink spots squirmed like paramecia under a microscope. No one then—or ever—had suggested I should stop taking a prescribed medicine, and I hadn’t.
But as a recent college graduate with my first unshared apartment and a real job, I was alone in dealing with medical professionals. As if the seizure had shaken me out of a mute complacency about my condition, I decided to begin defying doctors. It seemed a fresh, original idea. It would also take practice.
Dr. T. was my father’s age. He was all but bald, he mumbled, and he loved golf. On the bookshelf behind his desk sat a photograph of his daughter, taken in the mid-seventies. She wore thick, plastic-rimmed glasses and a necklace dangling a gold heart, nearly the same glasses and necklace that appeared in my own 4th-grade picture. Nearby was a recent photo of her grown up; now she sported the same hairstyle as mine and wore the same type of soft sweater.
Though harried, Dr. T. always fit me in on short notice, like the day, six weeks before the seizure, when I realized I was in trouble. Blue-tinged fingernails didn’t strike me as odd, but I was alarmed when I couldn’t walk the ten steps from bed to bathroom in my efficiency apartment without gasping and stopping to catch my breath. Chronic asthmatics adjust to lower oxygen levels, to sipping and conserving air—don’t laugh, don’t shout, don’t sing, don’t run. And herein lies the conundrum of speaking up: Is saving your breath self-censorship or self-preservation? Often I remained silent not because I felt acquiescent or content, but because the matter wasn’t important enough to warrant the necessary expense of oxygen and the heaving of lungs and diaphragm. On a “worth the breath,” scale, for example, complaining about a mistaken order at a restaurant was a zero, as was asking doctors follow-up questions. But I couldn’t tell what marked the upper bound. What could possibly justify the effort of angry rebuttal?
I shuffled the three blocks between my office and Dr. T’s, staying close to the buildings, pausing to lean against the concrete. The nurse took blood from the artery in my wrist and then analyzed its oxygen saturation. Normal adults experience nearly 99% saturation, while asthmatics are often closer to 90%. Mine was 54%. Or this is what I remember Dr. T. telling me as he flashed the printout, which resembled a dimestore receipt, so I could see the numbers for myself.
“I’m calling an ambulance,” he said.
I followed him to the hospital and followed his orders, despite being confined for a week, because of overcrowding, to a room in the terminal ward with moaning, deeply suffering patients. (A doctor on evening rotations told me cheerfully, “You’re my only non-AIDS patient!”) When I was released, jubilant to be free, I was taking more than my usual multiple medications, jotting dosage times and amounts on the backs of envelopes, carrying loose capsules in my coat and jeans pockets, and occasionally forgetting what I last took and when. Disorganized perhaps, but still dutiful.
A month afterward, on St. Patrick’s Day, 1990, I was visiting friends in Chicago, the city all new to me—the green river, the parade with the mayor in a Leprechaun’s hat (was he?), waving, police lining the route on a cool, damp Saturday. My friends were drunk and determined to get drunker, so we walked to a bar and ordered a round. When they wandered off to cruise the dark corners I quickly abandoned my rum and its chemical taste. I felt queasy and irritable; I couldn’t trust my senses. A young man next to me struck up a conversation. All I remember of him is the jet-fuel stench of his leather jacket, though this might have been my brain’s creation. Had I felt better I might have taunted the boy with something feminist and tough, but instead I barely spoke, barely looked him in the eye.
Then began the strange dance. My head snapped to the right, to the right, to the right. “Oh God,” I tried to say, and I was aware of my mouth opening for the “Oh,” but likely nothing came out. Next my right arm also took up flailing, to the right, to the right. No force to stop it, within or without. I was as much surprised as frightened. I didn’t know my body could move so wildly without my consent. I felt no pain, just the opposite—a powerless relaxation, as if in freefall—and registered that this was remarkable. Then my body began lurching, forward and back, forward and back, a ball being tossed between giants. Forward, back—that’s the last I remembered.
I’ve constructed an image of myself on the floor in my black coat, continuing the seizure without consciousness, people moving aside to give me room and yelling for the bartender and my friends. One friend leapt, she later told me, to where I lay. She also said, “Don’t ever do that again,” but there ended our discussion about the incident, and I never asked. I didn’t want to own the image of a sick person—an asthmatic, especially. Asthma is the nuisance of the fat kid on the playground. As an adult I rarely mentioned it outside of doctors’ offices.
Next I heard sirens and thought, blandly, a city, someone’s been hurt. Then the all-white interior of an ambulance materialized.
“What’s going on?” I asked.
“You lost consciousness. We’re not sure what happened.”
“Where am I?”
“You’re in Chicago.”
“No I’m not. I live in Washington.”
“What’s your name?”
“I know my name,” I said with disgust.
“Who’s the president?”
“Don’t—” be ridiculous, You mean they really ask who’s president? I lacked the energy to say more.
An IV had been put in my arm. One of my friends sat facing me beyond the end of the stretcher. I smelled her cloud of alcohol and wanted to insist to the paramedics that I hadn’t drunk anything myself, but then I blanked out again.
I regained consciousness in the emergency room. My friends stood inside the thin curtain next to my bed.
“We need you to take your pants off,” a nurse said.
“To take your temperature.”
But no one does that anymore, I thought, and then did it anyway, uncomplaining. I was so accustomed to following the orders of medical professionals.
Lying on the narrow cot, I still couldn’t remember traveling to Chicago, nor the beginning of the seizure, but facts pointed to my not being at home in suburban Washington, D.C. If I kept quiet, I thought, I might fool them, or my memory might seep back.
Or had I already spoken? Without my knowledge, the emergency room professionals had assessed my condition—they’d taken blood, known I wasn’t drunk, and determined the cause for my seizure. My body had communicated in lieu of my brain.
“Your theophylline level was 28,” a man said in a hasty and resigned tone, as if he saw these cases every day, as if theophylline was being dealt on the seediest corners of the city, right after heroin.
Theophylline, a chemical that occurs naturally in chocolate, tea, and coffee, causes the bronchial muscles to relax. In concentrated pill form it has enjoyed popularity as an asthma treatment, though not recently. It’s one of those tricky meds that’s effective and non-lethal only within a certain range. Levels over 20 milligrams per liter in the blood cause adverse reactions—from nausea, anxiety, and tachycardia to seizures and even death. Theophylline levels can be augmented by other substances, including Ciproflaxin (Cipro). When I was in the hospital back home, my doctor had prescribed Cipro as a precaution against bronchial infection. It was a new antibiotic then, but its interactions were well known. I shouldn’t have been taking both drugs.
I was aware that medical treatments could go awry, but only in a theoretical sense, in the same way I knew that a person could drown in a bathtub. It rarely happened, and it certainly wouldn’t happen to me. But in fact, a report released in July 2006 by the Institute of Medicine concluded that medication errors harm or kill 1.5 million people each year in the United States. In 1999 the group reported that up to 98,000 people are killed each year as a result of medical errors—7,000 as a result of errors in prescribing medication. Things could have gone much worse for me. Still, until the seizure I had not imagined that a doctor I knew, a doctor writing my prescriptions, might prove patently wrong.
“You could be a millionaire,” a pharmaceutical company executive told me. “Sue the doctor. It’s a slam-dunk.”
But I didn’t want a court battle. I wanted to take charge of my health, even if I wasn’t sure what that meant or how to achieve it. I began with defiance; that would be worth my breath.
Doctors call it noncompliance, and understandably, it vexes them. Willfully or ignorantly, patients neglect to take their medicine, miss appointments, ignore their diets, keep smoking, forgo physical therapy, or never follow up on requested tests. By some current estimates half of all Americans treated for any illness or condition don’t take their prescribed medications properly, and half of all American asthma patients are, in general, non-compliant. In fact, noncompliance has reached such epidemic proportions that some health professionals propose making it a medical diagnosis, a disease in its own right. An industry of educational tools, researchers, and consultants has coalesced around the challenge of getting patients to conform to doctors’ orders. But in my case, the notion of noncompliance was empowering. I would no longer quietly obey “the experts.” After all, they had proven they weren’t experts.
In the two days following the seizure I slept greedily and deeply, and afterward, as if my brain had been plugged into a charger, I could piece together memories of the period I’d lost, beginning with my flight to Chicago. I recalled my seatmate, a nurse, saying she could tell from one look that I was taking corticosteroids. I recalled the parade, the bar, the beginning of the seizure, the emergency room. By the time I returned home I’d regained as much knowledge as I will ever have about that weekend, and that night I called Dr. T. to leave my message.
Eventually, we met. I expected a debriefing in which he would express regrets and I would question him about the best course of treatment going forward. But he never admitted that the Chicago emergency room’s diagnosis was valid. Instead he admonished me, claiming that the seizure might indicate something more serious. Epilepsy. A brain tumor.
“Oh, come on,” I said.
“We can’t rule it out. This is very unusual, and very serious. Do you understand?” He prescribed anti-seizure medication and referred me to a neurologist, a friend of his.
The neurologist was haughty and young and his waiting-room reading material consisted of nothing but medical journals, which were unintelligible. The art was Miro, poorly framed. After the first office visit, during which he questioned me and performed a number of simple tests, he recommended an EEG. When that came back fine, he prescribed a sleep-deprived EEG. When that came back fine, he prescribed an MRI.
I earned $13,500 per year in a job with the federal government. My health insurance paid 80% of medical expenses, but the remaining 20% of my hospital and doctor bills that year, before the seizure, had purged my savings, and new charges remained unpaid. My share of an MRI would cost hundreds of dollars.
“No,” I said. “I can’t afford it. And I don’t need it.”
Some alternative healers call asthma the disease of self-suffocation, a manifestation of the inability or unwillingness to express oneself, to speak up. I had never thought that was my problem (wasn’t I merely saving my breath out of self-preservation?), but then, I was shaking as I contradicted this neurologist.
He looked up from his desk, brow lifted. He stared for a moment. “What state do you live in?”
“You’ve had a seizure. Legally, I could have your driver’s license taken away.”
I stared back.
“What if you were driving a car when you had that seizure?” he demanded. “What if you were driving a car and hit another car? Huh? And what if, in that other car, there was a little baby? And what if you killed that little baby when you hit that car? Then what?”
I tell myself now that had I not felt so ill and weak, I would have laughed at his awful histrionics and walked out right then. But the truth is that I can still picture that imaginary car (a grey sedan), the curve section of road just north of my apartment, woods thick on either side, where the accident would occur, and the way the cars would strike and crumple on impact. I still picture the baby seat (navy blue, upholstered), too, though curiously, the seat has always been empty.
In a 1987 study published in Social Science Medicine, researcher Irena Heszen-Klemens wrote that in taped conversations between physicians and non-compliant patients, physicians relied most frequently on “authoritarian tactics” and “medical threats [to convey] the doctor’s point in an indulgent atmosphere.” She also found that not only were these tactics ineffective, but they actually reduced patient compliance. Yet in her study groups, she concluded, the doctors’ “ego-defensive tactics predominated.” In a similar study from that time doctors questioned admitted that at least 50% of the time they relied on authoritarian tactics to urge compliance.
Cooperative, concordant, coordinating, co-healing. These words have been suggested to replace “compliant,” which was introduced into the medical lexicon in the 1970s. Perhaps because of research such as Ms. Heszen-Klemens’, doctors are now educated in ways of gaining a patient’s trust, like honoring needs and lifestyles, taking time to answer questions, and explaining why a treatment is well-advised. All of which seems like plain common sense.
I did have the MRI, though I was in tears when I left the neurologist’s office, hating the doctor and agonizing over the cost. Results from the test showed nothing abnormal. Dr. T. never mentioned the seizure again. I stopped taking the anti-seizure medication, just as I stopped taking the anti-heartburn medication I’d required because of the anti-seizure medication, without asking permission or telling him what I’d done.
As a former engineer raised in a household of sensible scientists, I have never believed in ghosts, apparitions, spirit guides, or voices that announce themselves sans human form. If someone told me he heard or saw anything of that sort, I would dismiss his experience as fantasy. Even if I heard or saw such a thing, I would dismiss it. Which is exactly what I had done when I heard the voice. Probably, I thought, it was the drugs. Or a lack of oxygen.
Nearly three months before the seizure, I was spending Christmas vacation at my parents’ house. My medications at the time—steroids, multiple bronchodilators, antihistamines, even a narcotic painkiller—had left me shaking yet stupefied, exhausted yet unable to sleep. In the middle of the night I drew a bath, then abandoned it after a minute’s soaking to pace the hallway, still wet, a white towel draped over my shoulders.
My mother woke and asked, “What’s wrong?”
I shook my head. “I’m dead to the world.”
Later, lying in bed, I wondered how to get back, to live. I’d been considering a change of environment. I lived in a mildewed basement apartment with old carpeting. My only window faced the pavement level of a parking lot where neighbors kept their cars running to warm them each morning, the tailpipes pointed my way. And the air in Washington was muggy, always pressing down, choking.
I might or might not have been falling asleep.
“Just go to Madison.”
Audible, deliberate, and calm. Distinctly a voice, without a human presence. In the room with me. Never before and never since have I heard such a thing.
But Madison? Wisconsin? I’d never been there, didn’t know anyone there, had no job prospects there. Although I had nothing against the place, I also didn’t have any reason to move to Madison. I dismissed the idea, along with the very idea of a voice, and returned to Washington at the end of December.
But after the seizure, after my first attempts at contradicting doctors, I remembered this voice, which of course, I’d never actually forgotten. I had little to lose. I quit my job and moved to Madison.
Speaking up, surviving. Both drew on and generated more self-empowerment, just as they drew on and generated more breath. My attempts before the move were timid beginnings, but now I was committed to healing myself. I just had to figure out how.
Any sufferer of chronic illness will attest that every acquaintance and stranger knows a surefire cure for her ailment. And no matter how crazy the cures sound, if there is a remote chance they’ll work, she will try them. Over the years I had experimented with chiropractic manipulation, creative visualization, acupuncture, massage therapy, hypnosis, homeopathic medicines, herbs, tinctures, teas, and special diets—all without positive results, and in some cases to the further detriment of my health. People on planes especially loved to give advice. One co-passenger said her son was completely cured from asthma through rigorous exercise. “You must exercise! Try running!” she cheered.
I nodded amiably.
Nor was moving to a different city a magical cure, of course. In Madison I still needed prescriptions. Breathing, I wrote in my journal of that time, felt like trying to row out of a vortex with my ribs as oars. Doctors tell us that with this disease, exhalation is the difficult part—the wheezing, constricted half of respiration. But experience told me in-breath and out-breath were equal struggles.
Luck brought me to Dr. O., a sharp allergist and a nationally recognized expert on indoor air quality and its effects on breathing. He was short and myopic, wistful when lauding Tommy Dorsey and goofy when he hustled between examining rooms. Upon meeting me he announced, “I don’t know what you do, but you’re hired. What a handshake!”
Dr. O. made no assumptions. He evaluated my allergy tests, family history, lung capacity tests, and chest x-rays, which revealed that my ribcage had stretched outward from so many years of the rowing, the fighting for air. He asked if my house had carpeting, a basement, pets, or mold—all potential allergen sources. He loaned me his favorite textbooks, their pages bookmarked and dog-eared, to take home. “Here, read this bit about eosinophils and leukotrienes,” he advised after giving a brief tutorial on the molecules that contributed to bronchoconstriction.
Then he said, “So. What do you think is causing the problem?”
“Uhhh.” I stalled. Here was my invitation to speak up, and yet I was dumbfounded by his question, by the very fact that a doctor had asked my advice.
It wasn’t that I hadn’t scrutinized my breathing every day, tried to correlate difficulties with particular environments, stressors, foods, exercise, or laughing fits, but that I couldn’t detect any causal relationships. Asthma had become the impossible, mercurial roommate whom it’s easier to avoid than try to analyze or appease.
“I have no idea. It never gets better, so how do I know what makes it worse?”
He nodded sagely, and I felt like I’d blown my chance. Again. Despite my resolve. Thankfully, though, he left the question open for me to return to, and I did.
During the next ten years I grew comfortable telling him not only what I thought was affecting my breathing, but also why I mistrusted doctors, which medications didn’t work, when I would stop taking a drug, and why I questioned new prescriptions. Meanwhile, he respected me, listened, summarized the latest research and urged me to try new therapies. My asthma was present, but well managed. I could walk—exercise, even—and my fingernails were rarely blue. Even better, perhaps, I’d progressed from unstudied defiance to an assured, concordant partnership with my doctor to save my breathing.
Then, in September 2002, on a trip to Europe, I forgot to take my three daily medicines. But unlike with past slip-ups, my breathing didn’t seem to suffer, neither in the subsequent hours nor the next day. Emboldened, I abandoned the prescriptions in my suitcase for the rest of the ten-day trip and then for weeks after I returned home. I was mysteriously fine.
For the following three years I forgot about my medications—and asthma. I felt not just well, but exuberantly healthy. Energetic and collected. Liberated. Quite literally, I was given a breather. Or had I taken it? Had the remission been a fluke, or had greater involvement in my own healthcare caused it to happen? I wasn’t sure.
Six months before the trip to Europe I’d moved to a new place with no carpeting or basement. I’d also adopted two new pursuits: breathing meditation and exercising with a trainer, pushing myself to an extreme at the gym, running when I could and lifting weights. One bit of recent asthma research suggests that chronic inflammation can alter the physiology of bronchial tubes, making them more constricted and sensitive ever after. If they’re malleable, does it also follow that they could be expanded? Might I have stretched and made my bronchi less sensitive through the hard breathing of exercise?
I suspect my relief was due to a combination of effort and environment, but I’ve learned that cures don’t come simply, swiftly, or even logically, and that despite our desire for definitive fixes, we must remain open to mystery.
Last year I moved to a tiny, rural town, where my habits of meditation and vigorous exercise gave way to a life overscheduled with new responsibilities and where I, reluctantly, rented a place with carpet and a basement. The asthma, my old ghost, my closest, constant companion, resurfaced. After a December week of sleepless nights and dizzy-headed days, I called a coworker whose husband is one of the few doctors in town. She gave me the other doctors’ numbers, but said about her husband, “You know, two of our kids have bad asthma, so he’s very experienced with it, personally as well as professionally.”
I liked him, but when he tried to give advice or help diagnose me I felt like an addict simply there for my fix.
“Yeah, I know,” I said, cutting him off as he began to explain how chronic asthmatics adjust to lower oxygen levels.
I only wanted the prescriptions, and I planned to take medication only as long as necessary until I could get back into my good habits, when the disease would surely retreat.
But my friend’s husband recognized a noncompliant. As he wrote four prescriptions he gazed at me shrewdly and said, “If you skip any medications don’t let it be the inhaled steroid. That’ll do you the most good.” And once again before I left the examination room: “Remember, if you decide to not fill all these prescriptions, make sure you at least fill this one.”
Speaking up in the interest of my health, it seemed, required being honest with him. I had told him about my history, and now I added that most likely I would fill only the inhaled steroid prescription. He nodded.
Asthma treatments have progressed dramatically in the sixteen years since my seizure. Theophylline is rarely prescribed. Inhaled steroids have become common, and their limited scope of side effects is a big improvement over that of the oral steroids I took for the better part of twenty years. Indeed, the inhaled steroid is the only medication I’ve used, and I use it sporadically. Many weeks pass when my breathing is perfect. Only occasionally does it get difficult, and never to the extreme that it did in my twenties. I realize the risks of my choice: the inhaled steroid is not fast-acting, but preventative and most effective if taken daily. Still, I’m content with my decision and my breathing.
Last week I went to our local drugstore to pick up a refill. The older ladies behind the pharmacy desk dawdled and giggled inexplicably. They happened to be laughing with each other as they answered the phone, they laughed when I gave them my prescription number and chuckled to themselves when they couldn’t find my bag in the plastic tub behind the counter. But when the clerk rang up the inhaled steroid refill she looked grim.
“Two-hundred-fifty-eight dollars. Oh my.”
“My insurance doesn’t cover it.” I shrugged.
She was required to call over the pharmacist—a stately, older man—to complete the transaction. He glanced at a sticker on the little white bag and then at me.
“You’re not taking it enough,” he said sternly. “You haven’t refilled this in three months. You are to use this twice a day and refill it each month.”
Two thoughts arose in quick succession. First: “You paternalistic fucking bastard, how dare you profess to know better than I do what my body needs!” and the second, which I voiced confidently while smiling: “Oh, I have a stockpile of samples from the doctor.”
The pharmacist eyed me. “Okay, then.”
“At that price, you almost have to,” the clerk said, and together we laughed.