I was puking into a white Dixie cup -- the first thing I grabbed when my stomach began to lurch again. The doctor winced in distaste and informed me that he couldn't find anything wrong: "Seventy percent of my female patients are psychosomatic," he told me. As if it were perfectly normal for a 24-year-old to be unable to stop retching into a specimen cup in his office.
A few nights later I was hospitalized for vomiting so much I went into shock, but after being stabilized at emergency, I was released. Then I went back to pursue more answers.
I was really beginning to dislike this doctor, with his closed, smug face, and air of disdain. He had been highly recommended. But I feared that his fancy office in the swank area of Palisades in D.C. was better suited for people with run-of-the-mill issues. Whatever my problems were, they clearly weren't easily diagnosable. I'd run through various specialists and tests, mostly for stomach disorders.
"I need a CT scan. I have a brain tumor," I mumbled, my face close to the Dixie cup.
"What makes you think you have a brain tumor?"
I repeated again what I'd been reciting at every appointment: "It's obviously neurological. I have constant headaches. I'm losing my balance -- falling if I lean over, my handwriting is going; I'm having trouble walking..."
He cut me off: "You don't have a brain tumor. Will you go see a psychiatrist?"
"If I do, will you give me a CT scan?"
The session with the shrink was uneventful. As he watched me leave, weaving along the long mirrored hallway towards the front door, he called out, "Are you aware you're walking sideways?"
I turned back towards him, "Oh, yeah, I have for weeks now."
When I reached the house, I called my boss and told her I'd be taking a leave of absence until I could find out what was wrong. No doubt tired of seeing me stumble into the office every day for the past six months, wan, pale, and sweating, needing to rest in the ladies' lounge for most of the day, she readily agreed.
My usual routine was to drag myself to the Metro and then to work, drag myself home on the same train - walking many long city blocks each way - and then collapse into bed or onto the nearest couch or chair, where I would fall into a deep, dreamless sleep until waking to what felt like struggling through fathomless dark waters with yards of tightly wrapped cheesecloth around my torso.
My headaches had become dull and constant, so numbing that when anyone talked to me anymore I struggled to understand them, as my thinking grew fuzzier. At times my eyeballs seemed to rattle back and forth in their sockets and I felt a dizziness I could only describe as that of a cartoon character - remember how Sylvester the cat's eyes and face seemed to spin uncontrollably after Tweetie Bird pounded him on the head with a mallet?
One afternoon, however, something made me flop onto the couch and turn on the TV. Dark Victory with Bette Davis was on. I became engrossed in the story. Well, Damn! She had a brain tumor, and I had all the classic symptoms that were mentioned...without waiting to see how the movie turned out, I turned off the set and called for a taxi.
Noting my jogging suit, the driver asked if I'd be running through Rock Creek Park after I gave him general directions.
"No, I'm going to the emergency room at Georgetown Hospital. I have a brain tumor."
He didn't speak for the rest of the drive, but did wish me 'good luck,' when I climbed out of the cab.
"What's wrong with you?" said the nurse at reception.
When I told her, she looked at me like I was either prescient, or would shortly be escorted to the psych ward. An intern came down and looked into my eyes with a flashlight thingy. I finally got my CT scan.
As I was lying on a hospital bed several hours later, the intern came in and grabbed my hand. "You're right; you have a brain tumor."
I'd have the operation on Monday - this was Friday - and the chief of neurology would be performing it himself, he said. I would be in good hands. They would admit me right away and keep me over the weekend to stabilize me.
The news was vindication for the past 18 months I'd spent trying to convince different specialists I was ill; coworkers who mumbled under their breath that perhaps I was a hypochondriac; a boyfriend who said that living with me was "like living with an 80-year old;" and doctors who said "when they see hoof prints, they think of horses, not zebras."
I was relieved. I had secretly worried I had leukemia, which had killed my paternal grandfather as a young adult. I didn't consider this brain tumor life threatening. They'd take it out and I'd be okay. I didn't understand why my boyfriend broke down and started to cry, or why he wanted to call my parents.
"Let's wait and tell them after the operation, when I'm okay."
He thought this an absurd idea, and called them himself.
Horrified, they flew up the next day. My equal parts naiveté and strength served me well. I sailed through the operation. Because I couldn't be admitted without listing a primary doctor, I had put down the absolutely ineffectual doctor. So every day for four days after the surgery, he popped his head through the door of my room, calling out "How ya doing today? Feeling better?" I'd turn my head to the wall and ignore him. I was gratified to see my surgeon turn on his heel and brush his inquiries off, pushing past him as if avoiding a pesky panhandler.
Later I got a bill in the mail for $400 - he had charged $100 for every time he stuck his head in the room for less than a minute. I immediately called his office and said while I should report him for medical malpractice, I was tired and needed to concentrate on my recovery, and if I never heard from him again I wouldn't call the AMA. In retrospect I should have, though, as I have no doubt he's busily misdiagnosing people to this day.
It was nine years before I experienced the symptoms of another brain tumor. This time, when the neurologist in the new city where I was living said he'd "stake his medical profession on the fact I didn't have another brain tumor," I just looked at him like I couldn't believe anyone could be that obtuse. And told him to give me an MRI that afternoon.
Twenty-four years ago, I learned to take my intuition for granted and to listen to my inner voice. That I was the only one who knew what was 'normal' for me better than anyone else. I wish I could say that from that day on I have always acted on this knowledge. Unfortunately, it has taken a few more medical crises before I finally mastered the art of taking myself seriously.
Today when I meet a medical professional who dismisses me in any way, I quickly leave and find another who will work as a member of my medical team. When your life is on the line, you can't afford not to be vigilant and proactive. I've been walking the journey of a survivor of a rare cancer ever since -- having finally been diagnosed with von Hippel-Lindau disease, and having undergone 10 of the most difficult surgeries anyone could undertake.
But the day I trusted my instincts and resourcefulness, persevering to save myself, will forever stand out.
Amy and her husband "Excy" Johnston live on Wye Mt. outside of Little Rock, AR, where they run Wing Spur (www.wingspur.org), a nonprofit wild mustang sanctuary. Amy has written professionally more than 20 years, and has recently begun writing creative nonfiction and short stories, several of which have won awards and have been featured on the radio, internet, and published in anthologies. She can be contacted at firstname.lastname@example.org.