With fists, with words, with kindness
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Eleven years ago I woke up to find the room spinning. In the soft blue-gray light of morning, the walls folded and slid and picked up speed. I pressed my body hard against the mattress, frantically searching for something to hold on to, but everything was moving with me.
When I’d gone to bed the previous night, I’d felt fine. I had not been drinking. Nothing like this had ever happened to me before.
I pushed the covers off slowly and dropped to all fours next to the bed. My only thought was that maybe I could crawl away from the vertigo. The carpet rippled beneath me like the surface of the ocean.
I’d just left a life I loved in Alaska to enroll in a two-year graduate creative-writing program in Colorado. My boyfriend had come along to help with the move. I was supposed to drive him to the bus station in Denver that morning so he could begin the 2,500-mile trek back north without me. Now I wasn’t sure I could.
I made it to the bathroom by sliding my shoulder along the wall. I thought if I could just brush my teeth, maybe have some coffee, things would right themselves. I was so wrong.
My boyfriend drove us to the bus station while I sat gripping the seat with one hand, the other splayed out against the passenger door, every muscle tensed. I felt as if I were on a roller coaster after having shotgunned seven beers. I remained at the station long after my boyfriend had thrown his duffel over his shoulder and disappeared into the bus. I stared at the waxed orange-tile floor, watched it start to spin, and tried to figure out how I was going to drive home. Because there was no other option, I slid into the driver’s seat, stayed below the speed limit, and somehow didn’t puke until I got to my apartment.
Later that day, the first doctor looked in my ears, checked me all over, and declared me healthier than most thirty-one-year-olds. Meanwhile I clung to the exam table and tried not to move my eyes. I’d told her about the recent changes in my life. “Too much stress,” she said.
Three months earlier I had been trapped in the elbow of a slow-moving Alaskan river by a seven-hundred-pound brown bear and her three cubs, the banks on either side too steep for me to climb. I had spent forty-five minutes keeping the mother bear in the sight of my rifle — finger on the trigger, safety off — as she’d snapped her jaws, paced, and false charged. Not even a tinge of dizziness that day.
“I’m pretty sure it’s not just stress,” I said.
The second doctor was an ENT — an ear-nose-and-throat specialist. He cleaned the wax out of my ears and referred me to the third, a physical therapist who specialized in the vestibular system, which controls balance and stabilizes eye movements. The therapist made me lie down, whipped my head to the right and left, and had me roll onto my side for ninety seconds and then sit up quickly. When that made me worse, she did it again.
I had not sustained a blow to the head. It wasn’t the altitude; I had lived in Colorado before with no dizziness.
An all-day seasickness had taken hold, with intermittent periods in which the world would whirl at blurring speed, forcing me into a fetal position on my bed, on the floor at Costco, on the sidewalk next to a busy street. A dense fog moved into my brain, making it hard to think. Words slid around on the page, as did cars in their lanes. Computer screens made me sick. So did rocking chairs and people who gesticulated while talking. I was dizzy in my dreams.
I had to wait three weeks to get in to see the fourth doctor, another ENT. She spent fifteen minutes with me, then sent me on my way with a quick “Nothing is wrong with your inner ear.”
The dizziness was constant, and the brain fog grew worse. No one knew how to help or even had a name for what was happening. I struggled through every assignment, every class, every day. By the four-month mark I’d dropped down to one class and was hanging tight to the shreds of my original plan.
The fifth doctor told me to stop eating dairy.
The sixth was a neurologist not covered by my insurance. An appointment cost $250, with two fifteen-minute follow-up phone consultations at $50 each and a prescription that cost $400 and kicked me into depression. “Oh, yeah,” the doctor said on a third $50 phone call, “depression is a common side effect.”
I had to find a full-time job: I needed better insurance and more money to pay for doctors and prescriptions and rent and food, although I was too nauseated to eat much. When interviewing for a job at a lab, I held as still as possible in the chair, hands clasped tightly in my lap, and hoped the interviewer wouldn’t notice how I swayed in a wind that wasn’t there.
The lab hired me and gave me insurance. Six months into my illness I dropped out of school. Each day I went to work, came home, and slept until I had to get up and do it all over again. I paid endless co-pays, covered all the specialists and tests that my insurance didn’t, filled prescriptions, and ate as much as I could keep down. My weight continued to drop until the thickest part of my arm was the elbow. People commented that I looked great. They wished they could get dizzy and drop some unwanted pounds.
The sixth doctor ordered an MRI and extensive blood work and mentioned that it might be a brain tumor or possibly multiple sclerosis, but we wouldn’t know until the test results came in.
After several weeks of elevated stress, and therefore elevated dizziness, the results came back negative.
The seventh doctor was an ENT who specialized in dizziness, which seemed promising — except for the framed optical illusions hanging in the hallway outside his office. He answered a text from his wife during the ten-minute intake interview and then ran a test that involved shooting water and air alternately into my ear, which left me too dizzy to function for several days.
The eighth, an ophthalmologist, decided it was a problem with my vision and prescribed eye exercises.
The ninth referred me to the tenth, who was more than an hour late and then was in a hurry.
I took pills and suffered side effects that only 1 percent of people get — most often a lightheaded dizziness on top of my seasick dizziness (there’s a difference), a weird tingling in my arms, shortness of breath, exhaustion, depression, and irritability. I had more blood work, another MRI, and a CAT scan. I had tests done again, just in case they’d missed something the first time. I passed every one. Nothing amiss. A master’s degree in writing, my half-written novel, my plans to return to Alaska, and the boyfriend all slipped away, one after the other.
As my former classmates began their second year of graduate school, I began my second year of illness. I was referred to a psychologist who had a sandbox in her office and seemed in worse shape than I was, but she at least offered me access to the library for the blind.
“I’m going to learn Braille?” I asked.
“They have audiobooks.”
Before the dizziness I’d read one or two novels a week and always had a pile by my bed. Now I couldn’t make it through two lines before the nausea took over. I longed to escape into a good story and resented everyone I saw engrossed in a book.
Doctors eleven through fourteen were chiropractors. Such violence in their hands.
A man named Dennis answered the phone at the library for the blind. I had a two-page list of novels I wanted.
“Yep, we have that one,” he said each time I gave him a title. I heard his fingers tapping keys as he looked up book after book.
“How many can I have at once?” I asked.
“There’s no limit.”
Everything else had a limit: the number of minutes I could look at a computer screen (four), the number of times a day I could navigate the stairs at home (two), the number of chores I could do in a row (one).
Dennis mailed me an eight-pound audio player and every book on tape I’d asked for. When I pushed the extra-large PLAY button, though, it wasn’t the same. I hated it. I wanted to read.
The fifteenth doctor, a primary-care physician who brought her dog to work, told me I should just get used to it.
The sixteenth, a spine doctor, asked if in all my years of competitive gymnastics I had ever landed on my head. He ordered extensive X-rays and then sent in his assistant to tell me I was fine.
A dull headache came on that lasted a year.
The students I’d started graduate school with graduated. The boyfriend bought a commercial-fishing boat and got engaged to someone else.
Doctor seventeen said, “If sixteen other doctors have not been able to figure out what’s wrong with you, then I won’t be able to either.”
Doctors eighteen through twenty-six were all the same: a long drive, a long wait, bad magazines, a scale, a nurse, another wait, a doctor focusing on my problem for five or six minutes, and then that nothing-is-coming-to-me look, that I-have-a-lot-of-people-waiting-for-me look, maybe followed by a prescription or two, then one more visit to say the pills hadn’t worked, and eventually a slow shake of the head that meant Don’t come back.
When I talked to my brother and my mother on the phone, I heard worry in their voices, and I saw it on the face of the attractive fireman who had asked me out a few times.
Conceding that I would be a person who listened to books instead of reading them, I pulled the audio player out from under the bed and pushed PLAY.
Doctor twenty-seven ordered another MRI.
Doctor twenty-eight, an acupuncturist, said the wind in my body was blowing in the wrong direction.
I waited an hour and a half to see doctor twenty-nine, an ENT who stayed in the room exactly seven minutes before hitting a button on the wall that summoned her assistant, who whisked in to schedule my next appointment as the doctor whisked out. But I forgave doctor twenty-nine all this because she also said she would not give up on me.
Doctor twenty-nine prescribed a medication that made me dramatically more dizzy, and then another medication that made me pass out and puke, and then another medication that took the edge off the dizziness. Verapamil: the first thing that had helped. I could still barely think through the fog, but the dizziness was decidedly better.
“What does that mean I have?” I asked.
“I have no idea,” the doctor said. “Verapamil affects many systems in the body.” She referred me to doctors thirty through thirty-two, all vestibular physical therapists, with the understanding that I could come back if none of them had any answers. I was made to stare at a whirling disco ball and stand on an unstable surface for unbearable minutes at a time. The therapists sought to show my brain how to deal with its new baseline. I would learn how to be dizzy in the world.
Another year passed. I taught myself how to hide the dizziness; how to walk down hallways without weaving; how to run my hand along furniture and walls to stay upright in the dark; how to squint one eye just enough to keep the corners of rooms in place. It wasn’t possible for me to curl up and quit. I had to keep my job to keep my insurance. Because I could not get fired due to an inability to function, I functioned.
When the fireman got down on one knee, I said, “I can’t. I’m too dizzy.”
Because I hated the look of pity that people gave me when I mentioned the dizziness, I stopped talking about it altogether.
In the 1980s I had been a competitive gymnast. My coach could be mean, but I got better because of it. He would push me, and in response I would push myself beyond what I thought I could do. Dealing with this illness was no different. I ducked my head and pressed on because there did not seem to be any alternative. I acted normal enough that most people didn’t notice. This wasn’t new either. When my dad had dropped dead of a heart attack when I was seventeen, I’d learned how to make other people feel OK about it before I’d ever learned how to make myself feel OK about it.
Doctor twenty-nine did not give up on me exactly, but she did retire and move someplace warm.
Doctor thirty-three was fresh from residency training and had taken doctor twenty-nine’s place in the practice. He decided I had a vestibular migraine and told me there wasn’t anything more to do for it besides take Verapamil, which I was already doing. Then he shrugged, pushed away from me on his rolling stool, and started tapping something into his computer. I decided I did not have a vestibular migraine because, if I did, and this was the best it got, my life was basically over.
That night I suffered my first-ever panic attack.
A few weeks later a physical therapist saw me crying while I was doing the disco-ball exercises, and she suggested doctor thirty-four, an allergist who’d had some luck with chronically dizzy patients. Doctor thirty-four noted my lifelong allergies and thought perhaps elevated histamines were causing swelling in my inner ear.
I took the small white pills he prescribed. Within days, walls stopped shimmying like curtains in the wind. Floors stopped rippling like water. The headache diminished. I did everything else he suggested: I ran the HVAC system in my house on fan only in the middle of summer. I vacuumed and sent a bag of dust to Johns Hopkins. I filled three more prescriptions and bought a weekly pill container so I would not miss a single dose.
I invited doctor thirty-four to Christmas dinner.
Whole days passed in which I was consumed by how lovely it was to grocery-shop without nausea, how nice to drive at night with the windows down past fields of still horses, how good to be able to tip my head back in laughter and not worry that it would leave me reeling with dizziness. I saw relief on the faces of my brother, who had moved to Denver, and the fireman, who had not been scared off.
Three months later the walls began to shimmer ever so slightly. The headache returned, and I was shoved back onto the tossing sea that no one else seemed to know existed. It was worse now, all of it — the dizziness, the fear, the isolation — because I’d had a small taste of freedom. Doctor thirty-four was stumped. The pill combination he had used to fight the dizziness had been overcome by some unknown force. He worked on my case intently for another year while I perfected Achieving Anyway: a state of complete disconnect between how I felt and how I acted.
Because I still dreamed of becoming an author, I had all my textbooks converted to audio and took one class at a time until I finished graduate school. I worked on my novel by memorizing each paragraph and then writing it by hand over and over with my eyes closed until the words were exactly how I wanted them. One paragraph a day. On good days, two. Because the fireman still would not give up on me, we began to plan a wedding. Because I did not want to work in a lab for the rest of my life, I started teaching a writing class here and there.
Doctor thirty-four referred me to an ice cube of a doctor who ordered another MRI, got my hopes up about an unusual surgery on my inner ear that could possibly cure me, but eventually told me there was nothing to do and stared at me with the don’t-come-back look.
I sat on the floor in the hallway outside his office and cried. Once I’d composed myself enough to drive home, I noticed a migraine clinic run by a neurologist across the hall. The only diagnosis that had not been completely disproven was vestibular migraine, so I walked in and made an appointment.
In the weeks before the appointment, I held tightly to the hope that a migraine specialist would know of some way to treat a vestibular migraine that doctor thirty-three, the fresh-from-residency-training ENT, hadn’t.
The neurologist was even colder than the ice cube. Because I did not see auras or have blinding, painful headaches, she did not think I had migraines. Mostly she was annoyed that I didn’t complete every day a long checklist in the headache journal she gave me. The instructions for filling in the boxes were confusing, and the pages swam before my eyes. The neurologist did not want to talk about how I felt; she wanted to pore over the data. When there was no data, there was apparently nothing to talk about.
She was skeptical of the idea that I had a vestibular migraine, but she had a pages-long list of drugs to try, and I transferred my hope to that list. The first few pills she prescribed decreased the dizziness — until the side effects (dizziness, usually) kicked in and made everything worse.
Over the next two years I got mildly better at filling out the daily checklist. I learned that the neurologist was a marathon runner and that patients were not allowed to touch the pamphlets in her exam rooms; if I wanted to look at one, I was to ask either her or the nurse. Every three months, after spending ten minutes with me, she prescribed different pills. Some made the dizziness slightly better, most made it worse, and all gave me side effects that almost no one else gets.
In those two years I mastered Achieving Anyway. Because I still held on to the belief that this problem would someday be solved, the fireman and I started a family. Because I lost more blood delivering our twins than anyone should — and because I couldn’t take a full dose of Verapamil while breast-feeding — I fell into a dizzy, exhausted haze that pushed me beyond every physical and mental limit I’d thought I had. Because I had not just one infant but two, I didn’t sleep much. Because we were broke (I’d stopped working at the lab), I started a teaching business. Because an agent picked up my novel and wanted me to rewrite it, I rewrote it.
My husband was at the firehouse the night one of our sons woke me up, unable to breathe. He has asthma and needed to get to the emergency room as soon as possible. I picked him up and immediately passed out due to a migraine drug I was taking. Both of us hit the hardwood floor together. I woke to find him struggling for breath, his head on my chest, his face blue. I had no idea how long I’d been out. I grabbed his brother and somehow drove all three of us to the hospital.
A few months later I woke up feeling as though someone had my heart in a vise. I ended up getting an EKG and being told I needed less stress in my life.
When the ten-minute neurologist stayed in the room only ninety seconds to tell me I most likely didn’t have migraines at all, but to take this next pill and come back in three months, I began to plan how to end it: The railroad tracks. Late at night. I stopped wearing my seat belt, hoping something would happen that wouldn’t be my fault. I pushed away everyone who cared about me. The ten-year mark was approaching, and I was done. It was all I could do to get through each day.
I picked doctor thirty-seven based on the fact that his migraine clinic was close to my house and he didn’t sound like a jackass on his website. I sat in his waiting room and stared at the headline “Jennifer Aniston Breaks It Off For Good.” Then I followed a medical assistant to a small room, waited some more with my eyes closed, and finally described to doctor thirty-seven my situation in one long, spoken-too-many-times, run-on paragraph. In the ensuing silence a cold fear spread in my chest. If he couldn’t help me, I was terrified of what I would do next.
Doctor thirty-seven didn’t wear a lab coat. He didn’t enter everything I said into a computer while half listening to me. He kept the lights low — which, when you think about it, is considerate when you’re treating people who have headaches. He sat still and listened and watched me closely.
“I think you have a vestibular migraine,” he finally said.
My vision began to tunnel. This was it. There was nothing anyone could do. This was going to be my life.
He went on to suggest two quick shots that he recommended all the time for vestibular migraine.
I tried to focus on him through the heavy fog of my dizziness and the way the room swayed around him. All the time? No one had given me a shot before.
“We can do it right now,” he said, “see what happens.”
I knew what was going to happen: the dizziness would get worse. I explained that I didn’t have a ride home.
He watched me: not in a calculating, mind-whirring, get-it-done-and-move-on-to-the-next-room kind of way, but in a human way. “I think it will help you. And if for some reason it makes you worse, we’ll make sure you get home.”
I was done caring what happened to me. Deciding I could sleep off the effects in my car until I was safe to drive, I agreed to the shots.
The medical assistant administered the injections: sumatriptan and Toradol. I paid the co-pay, made it down the stairs, and sat in my car.
Fifteen minutes later I was staring at the doctor’s two-story office building. It held still. My head didn’t hurt. The heavy fog was lifting. I felt like an alien to myself. I had forgotten what normal was like. I had forgotten everything except how to survive, and I had been losing my grasp on that. I watched cars drive by and found that tracking their motion did not cause my head to spin. I didn’t move, because I was afraid if I did, it would come crashing back. I should cry, I thought. A normal person would have cried with relief, but I was too exhausted to do even that.
The parking lot was directly across the street from the office of a chiropractor I’d seen in year three: ninety dollars a visit twice a week for a full year. I had driven right past doctor thirty-seven and his two shots 208 times.
It’s now more than a year later. I still see Dr. Tanner — doctor thirty-seven — twice a week for at least half an hour each time, longer if I need it. We spend that time talking, trying to untangle the knots my malfunctioning nervous system has tied itself in for eleven years. He’s got it 80 percent untangled, thanks to Botox injections and twice-a-week sumatriptan and Toradol and a few other migraine drugs whose dosages he is constantly adjusting based on how I’m doing. I have come to understand that some migraines can present with no pain or auras, only dizziness. I have come to understand that migraines are exacerbated by histamines, which is why the allergist was able to make a dent in my symptoms.
I can now read a bedtime story to my boys, the three of us curled up on the couch together. The look in my husband’s eye is a little less worried as he watches me navigate my life. More and more people are taking my writing classes. My novel has been published.
There continue to be setbacks in my treatment plan, along with leaps forward — including an entire month in which I barely noticed any dizziness at all. Dr. Tanner steadily attempts to figure it out by not giving up, by not rushing, by asking questions and listening.
I know I’m supposed to say that some good has come of all this, that I appreciate each moment now in a way I didn’t before, but that’s not the case. Mostly I feel a hot, boiling anger: That the migraine specialist at a major hospital never tried either of the injections that Dr. Tanner gave me on my first visit. That the vast majority of doctors I saw showed no interest in helping me figure out what other avenues to explore when their particular specialty turned out to be a dead end. That I am not unusual; that other people get the same confusing, rushed, non-patient-centered care that I received. That, for many doctors, patients continue to be numbers, billable in seven-to-ten-minute blocks of time.
Dr. Tanner may still one day give me that I-have-no-idea-what-else-to-do look, but that’s OK. He’s only human, and so am I — a fact he recognized and acted on from the beginning, which has made all the difference.
Despite the challenge of reading Rachel Weaver’s “Dizzy” [July 2017] with an IV in each arm, I was touched by her essay, which echoed my own encounters with doctors who don’t know what is wrong with you.
The doctor administering my IV treatment is a naturopath. In my experience naturopaths, perhaps because they are less revered, are more willing to accept the limits of their knowledge and actually listen to their patients.
I don’t entirely blame medical doctors for their unwillingness to listen. I suspect we do MDs a disservice by subjecting them to grueling schedules as students and residents. The process is dehumanizing and often produces physicians with a great knowledge of the body but a limited capacity for empathy.
My primary-care physician treats three to four thousand patients. Like the specialists Rachel Weaver sees in her quest for diagnosis and relief [“Dizzy,” July 2017], my doctor has just a few minutes for each appointment, most of which she spends tapping out boilerplate assessments and advice on a computer. She rarely touches me or makes eye contact. She diligently answers my e-mails but doesn’t remember who I am.
When I can afford it, I see a holistic practitioner who is trained in chiropractic, cranio-sacral therapy, homeopathy, kinesiology, and nutrition. She spends ninety minutes listening, talking, and laughing with me, and also laying her hands on my body. When none of the physicians I consulted could diagnose a perplexing array of symptoms, she identified the underlying hormone problem and helped me find relief.
Healthcare is a misnomer for the impersonal medical-pharmaceutical-insurance complex our society has created. Until we find our way to a saner system, it hardly matters how well-intentioned our doctors are; they will be prevented from giving us true care.
In “Dizzy” [July 2017] Rachel Weaver recounts her struggle with an illness that wasn’t properly diagnosed until she’d visited thirty-six professionals. I have friends and family with similarly horrifying stories. When they are finally provided a treatment that works, I always suggest they send a note to the doctors who misdiagnosed them, letting the doctors know what the problem turned out to be and what treatment was successful. Sharing the outcome might prevent other patients from having to endure years of suffering.