An excerpt from Dizzy: A Memoir.
Two days later, in the nurse practitioner’s office, she said, “Here, take a look at the X-ray.” On the backlit screen, she hung up the butterfly image of my torso and I wanted to yank it down immediately. I had always been so strong, so independent, and here was proof that I was nothing but whispery, small bones, the rest of my body fading into nothing in the background. She pointed. “No irregularities in your backbone,” she explained. “All your blood work came back normal. You are actually one of the most healthy thirty-one year olds I’ve seen in a while.” She shook her head. The defeated angle of it set my teeth on edge.
“But there’s clearly something wrong.” I was pleading, trying to shove myself in the way of the door that seemed to be swinging shut between us. I needed a partner. One who believed I was sick. One who knew more than I did about medical solutions. Someone who would not give up on me.
She didn’t say anything, just sighed.
“What’s the next step?” I pushed.
She shrugged. “CoQ10 is a supplement that helps with a wide variety of things. You could try that. It’s expensive though.”
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She sat on the rolly thing but suddenly began stretching further and further away from me in my vision in some sort of Alice in Wonderland phenomenon. This hadn’t happened before. The dizziness was alive and growing new appendages, gaining new skills. I shut my eyes tight. She touched my knee and said gently, “I really think it’s just stress.” The door between us slammed shut.
Because I didn’t want to cry in front of her, I gathered up my things. I walked down the slanted funhouse hallway and out into the blaring sunshine. Because my car was the only quiet place in my life, I sat in it for a long time. I watched a younger, lighter version of myself walk by, hand in hand with her boyfriend as they crossed campus. I watched the way she tossed her head back in laughter, the easy set to her shoulders.
I was afraid to cry. Afraid that if I started, I would never stop.
I’d survived so much: the constant dull roar of poverty with no safety net, a shipwreck, Cuban pirates, a dynamite incident in Croatia, charging bears, bush planes diving toward the earth on stormy days. It wasn’t stress. It was a biological malfunction. I wasn’t imagining it. It wasn’t a matter of deep breathing and clear thinking to gain control over it. No amount of talking about my feelings to a therapist was going to stop the floors from sloshing. I needed pharmaceuticals. I needed answers. I needed to find someone who believed me.
I had stepped through the front door of the medical system without questioning that I would be guided toward a solution by smart, competent, caring people as long as I was a smart, competent, compliant patient. I had not imagined the shrugs, the platitudes, the desperate act of trying to convince them that there was actually something wrong with me. Where were the doctors who didn’t give up, who dug in and tried and tried and tried until whatever was wrong was no longer wrong? I had always assumed doctors were like pond ice in the dead of winter. Solid, able to hold the weight of a skater or a truck.
More clarity descended: To be this dizzy for much longer would lead to total collapse. If I couldn’t work, couldn’t support myself, then what? My car was paid off. The seats reclined nicely. I could live in it for a short period of time at least. I closed my eyes, tried to swallow the fear that clawed in my throat. I would find the doctor who was willing to make the long walk to the middle where we could compare notes. I would get better at reporting the intricacies of the sick world, him or her or them would bring their vast knowledge from the medical world, we would pull up chairs, put our heads together and find a solution. I just had to keep going until I found that doctor. Or, possibly, more simply, I just had to randomly land on the doctor who had seen what I had before without the help of a famous dad doctor with doctor buddies and without the cash to fly all around to the top institutions in the world.
Two months later, still waiting on the pre-existing condition clause to run out, the world was a hazy, hateful place. I hadn’t worked on my novel in months, had barely eaten and the dizziness continued to rage. My ears began to ring so loud it was often hard to hear. There had been no “hey, you OK?” check in from the Michigan neurologist. Obviously. That blade of hope that it might be vestibular migraine and Topomax would hand me myself back turned sharp and cut to the bone.
The $800 doctor was young, her hair bobbed. She looked me over as I perched on the edge of the exam table, white knuckling it. She turned her back in the usual way and began filling in narrow computer fields. I glanced at the screen and felt a burst of hatred for all things bright and flashy. I answered her questions about Grandma, Grandpa, Mom, Dad, the elbow surgery in 1985 in a monotone, trying to save my energy for the real conversation.
She took me out into the hallway and asked me to walk a straight line. She walked along beside me with a hand at my back, likely because it was already clear it wasn’t going to go well. She guided me back toward her just before I walked into the wall. She asked me to stand on one foot and caught me before I realized I was falling.
She led me back into the small exam room. “It’s not vestibular,” she said, helping me sit down again on the crinkly paper that now stuck to my sweaty hands. “It’s structural,” she added. I waited for her to tell me what to do next. She did not.
“Who do I see for that?”
She lifted one shoulder. “That’s outside my realm of expertise.”
“A chiropractor?” I pressed. “A spine doctor? There was nothing wrong with the X-ray of my spine.” I wondered suddenly if whoever read it, read it correctly. Are these people to be trusted? What if the X-ray reader had the end-all-be-all fight of his marriage right before getting to work and missed something minute? Perhaps an X-ray reader at a major hospital would catch some small abnormality that a student health center guy would miss? Was that a shitty thing to think?
“What do you think?” I asked the doctor.
She waggled her head noncommittally. “It’s not a problem with your ears.”
Wasn’t there some sort of overview in medical school? Some sort of flow chart: if it’s not this, it might be this. And besides, she was the one with the brain that worked. I took a deep breath. Tried so hard to say Please help. The words tunneling up from that deep dark place there seemed to be no way out of.
But I was too slow, the words buried under too much rubble. She was standing up, and I was too. I gathered up my coat and she followed me out into the hallway. She walked next to me, her hand on my lower back again as I headed to the front desk to hand my card over. To pay almost a thousand dollars for a shrug. I tried to feel grateful, she was obviously worried I’d walk into the wall again, but I couldn’t even look at her. She bent down to the receptionist and said something I couldn’t hear over the noise in my head.
The receptionist nodded, tapped twice at her computer, and held out her hand for my credit card. “That’ll be $100.”
The doctor straightened up and caught my eye. In her look, I saw that she had actually seen me. She had heard what I was not saying. That I was at the end of my rope in every way possible: physically, emotionally, financially.
I tried again to feel grateful that she had miraculously lowered her rate to something reasonable, but that shrug played over and over in my mind. I wanted to shrug back now that it was my turn. But I couldn’t. “Thank you,” I said, dropping my eyes, taking my place below her in the animal kingdom of the health care system: patient/doctor, broke/not broke, weak/powerful.
Rachel Weaver is a writer and a patient advocate.
