What's Wrong with Me?

I know enough to catch rest where I can get it. I curl up in a ball. The banging of construction workers and the rusty engine rumbling outside roll over me. I want to be in a warm bed with pale blue sheets, with rain hitting the windows and splashing in t he gutters.

But I am at Johns Hopkins Bayview Medical Center, waiting to be told, once again, that they can't find anything. Not after six years and dozens of attacks where I fall down hard, can't speak or respond, followed by hours and days of garbled language, scrambled memory and a limp. Not after the right side of my face was paralyzed, and my entire right side weakened.

I try not to let it bother me. I know what this physician will probably say.

Still, there is a jelly bean of hope down in my gut. This neurologist rides horses. She noticed we had the same gold watch. Her first name, Constance, sounds calm and true. I want her to be the one.

When Dr. Johnson walks in, I struggle to sit up, to right my hair, to snap my saggy face and dead eyes to life. She sits at the desk and begins to pore over pages of jagged lines. Layers of delicate markings that tell the story of my brain. I see her pause at one page, tracing one line with her finger.

I look away, trying to focus on the old concrete walls, the maroon and brown tiled floor.

"This is suspicious," she says, pointing to a wide zag, one of hundreds of miniature mountain peaks that have registered the electrical activity in my head. On page 107, there it is in black ink. That whole row didn't match the ones before or after it. She circles it in green marker. I am trying to breathe. Then she circles another one.

I get down from the table and sit beside her, clenching my fists in my pockets, wishing, hoping, praying, scolding myself -- no, this will not be it.

For years, I had wanted the name so badly, the label, the excuse. It would be my own personal handicap license plate, something to silence murmurings that maybe my illness was imagined. That I worked too hard, or couldn't handle the stress. That's what people needed to believe when doctor after doctor, test after test, came up empty.

No one wanted to accept that problems can't be addressed and bundled up all neat and mailed off to some faraway place. No one wanted to hear about a medical condition that didn't get tested, identified and treated.

So many people believe that if they were in my position, they could conquer it. Maybe even cure it. They'd find the best doctors. They'd go to world-renowned medical centers. They'd try vitamins, massage, meditation. They'd drastically change their lives, if that's what it took. They'd quit their high-stress jobs, move to the beach and waitress in a margarita joint.

I tried almost every one of those options. But laughter can't rewire your brain. No one wants to accept the truth, except those of us it is forced upon: that the causes of many health conditions are elusive, and that they last forever. Despite all the books and advice, you can't always heal yourself.

And no amount of sleep, medicine or yoga will ever bring back the self you lost.

For so long, I thought I could.

The morning it started, Dec. 28, 1990, was like so many winter days in Northern California, chilly, foggy and gray. But from the moment I wrested myself out of an unusually deep sleep, I knew something was off. My face felt numb, my entire body felt heavy and slow. I tried to shake it off and headed to the police station. I was a cop reporter at The Sacramento Bee.

I had to force everything: my eyes to focus on the reports, my hands to hold the blue Bic pen, my mouth to form the words to talk on the phone to my editor.

Then it got easy. My body fell hard against the cool tile of the lobby. I couldn't squeeze the medic's hand. I couldn't lift my eyelids to see the detectives gathered on the nearby staircase. I mumbled a few answers, trying to give an emphatic no when the medic asked if I was pregnant, sending a ripple of speculation through the crowd.

The ammonia from the smelling salts assaulted my nasal passages but couldn't rouse my body. The medic's hand, slapping against my cheek, stung. They called my name, loud and slow.

"Diana, Diana. I need you to look at me. I need you to stay with me."

But I was floating, limp, loose, going somewhere else. I had no conception of how far I would go. I was 25 and in the intensive care unit. The diagnosis was stroke.

When that was ruled out, I was swept into a whirlpool of tests, doctors, disease and doubt. During the next several weeks, I faced a parade of neurologists, cardiologists and infectious disease specialists.

The first neurologist said she didn't know why my face was paralyzed, and couldn't find anything else. When I collapsed in her office, she quickly checked me, then stepped over me to go to an Alzheimer's conference.

Next came the infectious disease specialist. Sitting in a leather chair behind his mahogany desk, he explained that I had antibodies -- or had been exposed -- to three diseases: Lyme disease, an acute inflammatory disease I could have acquired from a tick while hiking in wooded areas; sarcoidosis, a chronic disease of unknown origin that primarily afflicts African-Americans; and Epstein-Barr, a virus to which many people carry antibodies, but about which little is known. I am a white woman who doesn't hike. But I pursued a specialist in Lyme disease. He confirmed I had it and gave me a prescription, something I naively thought could take care of everything. Elated, I found the first pay phone and called my mother. I was also treated for a complicated migraine disorder and a heart arrhythmia.

This was it. I thought it was over.

But when the prescription ran out a month later, I was still ill. Intense fatigue persisted, along with the feeling that sickness had saturated every atom in my body. I couldn't make it down the hallway from my corner apartment to the elevator. My right leg dragged. My speech and memory often seemed frozen. I continued to have "episodes" or "spells," as some called them, in which my body just fell over. I got bruised. I had concussions. I couldn't work for four months, and only part-time for the next three.

I submitted to an array of almost medieval tests. My spinal column was tapped, my brain was scanned, my nerves were zapped by electric currents. I was a good reporter. I dug up information. I made calls, I questioned, I took notes. I tried to match my list with a disorder, a disease.

But my symptoms didn't fall into the neat thumbnail sketches that link people to a disease. If you're lucky, you have a typical presentation, and you fit the profile.

The only one I seemed to fit was single, young female with strange neurological problems. As some of the fatigue abated over the next five months, I managed to get up, take a shower, dress, drive to work, walk across the parking lot, ride the escalator and get to my desk in the newsroom.

By the time I reached that spot, I needed a rest. I wanted to put my head down on the desk so badly. But I held it up. I did some stories. And I kept searching, trying different doctors and treatments.

Each test, each physician, held the promise of that title, that diagnosis that would clarify everything once and for all. As time wore on, I realized I needed it, not to get treatment, but simply to function in this unforgiving world.

When no one can see the illness, where there is no cast or a cancer victim's bald head, no credit is issued. No explanations accepted. You're a spoilsport if you can't go out for a few beers. You're unfriendly if you're too sick to stand by a colleague's desk and chat. You're odd if you can't drink coffee.

Slowly, over several months, over the first few years of its presence in me, the disease, and the doctors, beat away my confidence. Eroded my belief that I knew what I was feeling. Made me wonder if I was a baby about the migraines that drilled into my skull one day, and took an ax to it the next.

I was haunted by my sisters' childhood taunts, calling me a weakling. When interns at an academic medical center looked up from a large medical encyclopedia and announced, "panic attacks," I actually tried to believe them, wracking my brain for what might be scaring me. I telephoned longtime friends. "Do you think I'm terrified of something and don't realize it?"

In my darkest place, I began to wonder if I had done this to myself, if I was to blame for losing so much.

I wanted to learn to paint watercolors, wanted to get back to developing my own photos. I considered saving for a piano so I could return to playing. I don't know if I would have done these things if I had been healthy, but the doubt will always linger. I won national prizes for my journalism, but couldn't help wondering how much better my work might have been.

For my illness, like a monster, had swallowed it all whole: my energy, enthusiasm, emotions. My 20s.

Most of my free time was spent on my couch, under an afghan even in the summertime. I felt like an 80-year-old woman. My body couldn't even take walks, much less jog. Getting to social functions became a lost cause. Throwing my own dinner parties seemed even more remote. Now, I had to make excuses; I had to be boring.

The milestones I had expected to hit by certain ages came and went. No marriage by 29 or 30. When I met the man I thought I would marry, I saw our future little girl, sometimes even seemed to feel her presence. I wanted to name her Grace. This summer I will turn 32, and she's not here.

So much of the time, I just felt too sick. I had lost the spark that lit me up from the inside. I almost hated what I had become.

I was desperate for new friends to know this wasn't the true me. I wanted a video, or some evidence, to show them who I was. The person who taught herself trombone one summer because the Villanova University pep band needed more brass. The person who pull ed all-nighters, one night to write papers, the next, to play.

The person who played Frisbee in the dark on a fellowship in St. Petersburg, who eluded singer James Brown's Dobermans on an assignment, who organized poker games at a small South Carolina newspaper, who splashed in the majestic fountain in front of California's Capitol without getting caught. The person who connected her bat with a softball so it sailed high and far, clear out into left field.

I lost her. I couldn't seem to get her back. And none of the experts could tell me why.

There seemed no other option but forcing myself to go on.

I dragged myself out of bed. I hung onto railings. I sat when other people stood. I lugged bottles of water everywhere to fight off the dry mouth caused by medication. I carried green apples and Lifesavers for moments when I was strangely starved, after eating just an hour before.

Discreetly, I pinched my cheeks to make my skin look human. In the stalls of bathrooms at work, I leaned my head down and rested it on the toilet paper rolls. I fantasized about having a wheelchair that could carry me. While taking notes for work, I stare d down at the words to see that my hand had switched tenses or substituted other letters. I scratched them out and wrote the words down again.

At stoplights, I envied other young women who appeared so healthy, so untouched. I kept believing that someday my body would just switch back to my old self. Sometimes I walked into bathrooms and didn't recognize myself in mirrors.

I drank up kindnesses like water.

The touch of my former executive editor, patting my hand, while I lay semiconscious on a cot at the newspaper after an attack. "You're going to be OK, kid," Gregory Favre used to say.

The time of a graduate student I met on a journalism fellowship, who sat by my bed and hooked me up to intravenous antibiotics every day for six weeks.

The love of a boyfriend, who stayed with me on particularly sick nights and didn't care if he didn't get much sleep. One night at 3 a.m., I leaned against the cold toilet, throwing up.

He popped in, his voice casual: "D, do you want an English muffin?"

I became a health reporter, one who knew the big secret: that despite all the fanfare about miracles, modern medicine has only tapped the surface -- broken bones, clogged arteries, organs that need replacements. Certain compartments in the body, like the heart, have been endlessly dissected. But the picture is incomplete.

We can hook up a new heart, but we can't explain why a woman can carry a developing baby. People want to believe all the mysteries are solved, yet so many illnesses are in the shadows. So much of the brain and its intricate interactions are still lost to us.

My illness seemed to fall in this area. I imagined a virus or an undetectable organism had invaded my head, setting off millions of reactions too subtle, too complex to be caught by the huge machine that takes a black-and-white picture of the brain.

Over the last few years, some of my symptoms faded. I adapted to or hid others. I got a job and moved to Baltimore, a place where few people realized I was sick. I pretended to be healthy. During a strange stretch of feeling better, I found myself taking steps two at a time, making to-do lists with a clear mind, working 10- and 12-hour days and then shooting pool with friends until 2 a.m. My eyes were bright again, and I savored it. But I knew that the indelible ink of illness had stained me. I was forever altered. I knew it would be with me forever, like a sick, old dog I would have to take care of. I also learned to keep it a secret.

Then, a few months ago, it happened again: the falling down, the thud, the nice, solid floor. Medics asking who was president and what day it was. Getting shipped off in the cold ambulance.

My new neurologist, Dr. Constance Johnson, instructed me to come in the next morning for an electroencephalogram. I had undergone this test before. I didn't think it was worth it. The EEGs almost always came back normal.

In the lab, I lay down on the exam table as the technician's long fingernails scratched at my skull, gluing 20 electrodes to my head. A long wire attached to each led back to the machine. The tech pulled down the blinds, spread a cotton blanket over me. I tried to close my eyes, but I could hear the tapping of the technician writing in grease pencil, the light etchings of my brain's electric currents being traced on the paper.

I was pure sick. The inside of my head felt charged, disturbed. I thought if this woman didn't catch it now, no one ever would.

That brought me to this moment in this latest exam room, to considering that Dr. Constance Johnson might actually be about to deliver an answer, the answer.

She looked up from the brain patterns and opened her mouth. I bent nearer, straining to hear her soft voice over the construction machine outside.

"This looks like a seizure," she said.

Mentally, I flipped through the book of all the conditions doctors thought I might have, from multiple sclerosis to secreting brain tumors. I asked if she was certain. But I could feel the click deep inside. I knew, somehow, she was right.

"All these years," she said, "you've been having seizures."

It boiled down to timing. Only one other neurologist had ordered the EEG within hours of an attack. And that time, it was considered borderline for a seizure. This time around, they found it.

Dr. Johnson asked me to go back for a longer EEG. I carried the precious thick book of my brain waves, my abnormal etchings, my proof.

In my mind's eye, images of the doctors flashed by, the ones who barely listened, the ones who put me in categories of their own making, the ones who dismissed epilepsy because my seizures weren't typical.

Walking to the lab through busy hallways, everything seemed strangely muffled, as if someone had turned the sound down. Nurses and patients I passed seemed like foreigners. Even the air felt different. I found myself outside the hospital's chapel, staring through the stained-glass door.

Only I wasn't angry, or upset. All the emotions were smoothed-out, like when my mother spreads a freshly washed sheet over a bed and straightens the wrinkles.

I hugged my test. I felt so quiet.

I was now in another country, a place where I would finally have a passport, a Medic Alert bracelet engraved with one word: EPILEPSY.

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