Everyone Cries

"Untitled," by Jan F.

"I'll take care of it," the doctor said. And he took control. He had me touch my forefinger to my nose, walk a straight line and extend my hands. He delicately tapped my knees and ankles, producing uncontrollable jerks.

I was bled and photographed. Wires were fastened to my skull. Narrow sensors were placed inside my nose. My body was placed in a padded capsule, my head locked into place to obtain pictures of my brain. I didn't get to see any of the results.

"Good news," my doctor said when I reported back. "It's not a tumor."

"Oh," I said.

"What we have looks like idiopathic adult onset seizure disorder. Not uncommon," he said. "We have a number of approaches for controlling the seizures."

"Oh," I said.

The doctor prescribed pills. One the first day, two the next, three, then four. He would monitor the side effects. The tired feeling, nausea, and dizziness would pass. "Get blood drawn and call in three months," he said, showing me out of the office.

The reality of the diagnosis rattled my settled life like an earthquake. Everything shifted. Impregnability was breached, control lost. Travel, jobs, friends, hobbies, sports, dreams – everything needed to be re-examined.

For the most part, I denied everything. As I stumbled through my drugged days, I pretended that I was still perched on bedrock. The doctor will take care of it was my mantra. I wobbled and spun, always tired or dizzy or nauseated. And I counted the days until I could report back to the doctor.

When I did, I would first surrender my arm, breathing deeply as the vacuum sucked my blood into tubes, sliding my eyes away from the diagnosis being written on each form. Trying to look normal.

"Things look good," the doctor said. "Your bloods are almost to the therapeutic level. Come back in three months."

Meanwhile, I worried whether each spell of indigestion or dizziness was the flu, or the medicine, or a seizure. I called the doctor for reassurance. After I'd called a few times he sounded annoyed. I even felt foolish when I called to report another seizure. He was brusque and replied, "We can take care of that."

I tried to believe his reassurance. I needed to believe his reassurance.

When I returned to his office, I had a chart plump with blood tests – stick figures with pluses and minuses over different areas – and reports of how electricity traveled through my brain.

"The bloods look good," he said. "We'll leave things as they are. Call me if you have another seizure."

My body continued to slip, losing its sense of harmony, until its only certitude was my ability to touch my nose and walk a straight line with my eyes shut. I gave up responding to unusual feelings, tried not to notice them, and certainly didn't bother the doctor.

I spent the next office visit crying over my losses. "It's normal," he said. "Everyone cries." But I was cautious in my tears, not wanting to say anything that would bring disapproval. And I didn't have the words for what the tears were really about.

When I started to cry during my next visit, he said: "More than once is unusual. Perhaps a psychiatrist?" and we returned silently to our ritual. Nose, reflexes, walk the line. Because I wanted to be normal in my abnormality, I locked the tears inside. And eventually I didn't feel them anymore.

I no longer owned my sleep, or my appetites. I felt my wit dull and my perceptions slow. Conversations seemed labored. I started rooting around in old diaries and picture albums. I wanted to find the real me from these snippets of the past, and then successfully rappel to the present, identity in hand.

I was unsuccessful. I couldn't separate age and change from disease. I felt lost.

However, I remained a compliant patient. Three month visits widened to six month phone calls. The side effects of the medicine were accepted, as was the occasional seizure.

My chart was filed under S for success. My bloods were correct, my neurological markers were normal, and I seemed emotionally stable. The doctor had taken care of it, as he said he would.

*   *   *   *   *

Hearing a Patient's Story: A Commentary on "Untitled"

When Jan F. was diagnosed with epilepsy in 1976, her physician must have thought her the ideal patient. In the beginning, as "good" patients do, she let the doctor take control. She kept her appointments, took her medications, and tried to appear "normal" even when she "wobbled and spun, always tired or dizzy" from the drug side effects. But at some point, she stopped going to her doctor.

Jan F. wrote "Untitled" years ago, when she initially stopped seeing her physician. In her writing, Jan reveals exactly why she turned away from traditional medical care. She tells us what the initiation into the world of illness was like for her – a story we caregivers rarely hear.

What really happens when a patient receives a life-altering diagnosis? What happens when her acceptance of that illness doesn't jive with the medical community's expectations? What happens when, in spite of her diagnosis, she has things to do, but can't talk to her care providers about how best to get on with her life?

In order to feel present, rather than ablated by her illness, she experimented with her medication dose and drank large amounts of caffeine. She became a psychiatric nurse and then a psychotherapist, often hiding her diagnosis from family, friends, and coworkers. She cleared trails for the Sierra Club, hiked at high altitudes, taught aerobics to seniors, and wrote poetry – seeming to have more energy, her sister told me, than anyone else her age. Jan F. lived her life fully until, on August 2, 2002, she suffered an epileptic seizure during the night and died. She was 61.

Reading this essay, I felt, viscerally, how difficult it was for Jan to be, suddenly, someone who must submit to testing, prodding, labeling. Her recording of conversations with her physician reveal the distance between them: His proclamation of "good news" and "It's not a tumor" didn't allow for the possibility that, to her, the diagnosis of epilepsy was bad news. The juxtaposition of her struggle with fatigue, nausea, and dizziness with the physician's comment, "Things look good," underline their disparate points of view: hers of a life forever limited; his of therapeutic blood levels.

When the specter of impending seizures hovers over "each spell of indigestion or dizziness," Jan seeks reassurance. When her doctor sounds annoyed, she feels foolish. When she cries, she's told, "That's normal." Eventually she locks her tears "inside" where they remained invisible to her provider. And when she at last assumes the mask she will present to caregivers for the rest of her life, her language becomes impersonal.

In order to survive within the medical system, she had to step back, out of herself. She seemed compliant, appearing to swallow both her medicine and her diagnosis. Her chart was "filed under S for success."

Though the focus of Jan's story is what the doctor did not do for her, for a variety of reasons, all of us may be similarly guilty. We are too busy to take time to listen to a patient; we don't feel comfortable dealing with a patient's emotional needs; we aren't qualified to deal with a patient's emotional needs. But what would happen, I wonder, if all patients wrote stories of their illnesses, and we had – and took – the time to read them?

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