Family Matters

Listening for Zebras

A mother learns to trust her animal instincts

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This article first appeared in the July/August 2004 issue.

There comes a moment in a parent’s life when you understand that raising a child is less an act of love than something much wilder, something that sniffs the wind and bares its fangs at intruders, implacable in its drive to keep its offspring safe. You may not know you have this beast in you; you may see yourself as essentially rational and peaceable. Then everything changes.

When my daughter first began to complain of headaches two years ago, I felt only sadness. I was almost sure that Darrah, then 16, had been ushered into the netherworld of migraines, a familial female curse I knew all too well. I gave her ibuprofen, pulled down the shades in her room. It encouraged me that after a nap, she often felt better.

But better never lasted. Finally, one afternoon, my daughter came home from school and stood directly in front of me, her face taut and pale. “Mom,” she pleaded, “how come I have headaches every day?”

Some wall within me crumbled. I called Darrah’s doctor for an emergency appointment.

“My headache feels like it’s boring straight into my skull,” my daughter told our pediatrician the following afternoon. Darrah then described her painful eyes and two brandnew symptoms–a sore neck and a bizarre sensation of fluid sloshing around in her head. The doctor peered into Darrah’s eyes with a tiny optical light, and checked her balance and reflexes. “It may just be sinuses,” she offered, putting away her instruments. “Call in two weeks if she still has headaches.”

We don’t have two weeks to wait, I thought as we stood to leave. I had no proof, not even a theory. Only a gathering fear.

Early the next morning, unbidden, a thought barreled into my consciousness. The medication. For the past several weeks, Darrah had been taking a new antibiotic for a tenacious skin problem. Pill bottle in hand, I logged onto the Internet.

Two hours later, I stood up from the computer, dizzy with disorientation. No, I kept repeating to myself. No, this can’t be happening.

I’d begun my hunt by logging onto Google, where I typed in “side effects” and “minocycline,” the generic name of Darrah’s medication. The first website I opened started out soothingly, describing side effects as “usually minor.” Then, scrolling downward, I read: “There are a few significant, but very rare side effects that develop in about one in 10,000 people. One is pseudotumor cerebri, which causes progressively worsening headaches and vision problems. . . .”

In a fury of mouse-clicks, I’d then landed at the website of the venerable North American Neuro-Ophthalmology Society. There I was introduced to pseudotumor cerebri, a neurological disease characterized by steadily increasing pressure within the brain and spinal column, just as would occur with a tumor. But in this case, the pressure is caused by excess cerebrospinal fluid, which can trigger lifelong, severe headaches and back pain. Then I read the worst: “The elevated pressure . . . can damage (possibly permanently) the optic nerve, producing decreased vision.”

It’s just one website, I told myself as I checked two more. The verdict was unanimous: Expect vision loss.

Suddenly, it was two summers ago, and I saw Darrah and me pedaling our bikes along a dust-choked rural road on Maryland’s Eastern Shore, where we’d gone, on a whim, during the hottest spell of the summer. As we pumped single-file past stunted cornfields in 98-degree heat, I began to wonder why I was subjecting my child to this ordeal when Darrah suddenly looked back at me, grinning, her face shimmery with sweat. “Mom,” she yelled, “I’m so happy!”

How would this exuberant, life-gulping kid of mine survive the future I saw reflected on my computer screen?

When Darrah arrived home from school that afternoon, I asked her to stop taking the antibiotic. Then I told her about the possibility of pseudotumor cerebri, carefully editing out worst-case scenarios. She looked into my face. “Am I going to be okay?” she asked fearfully. I have no idea, I thought. “We’re going to get good help for you,” I said finally. “I promise.”

The following day, we got an emergency appointment with Darrah’s dermatologist, the doctor who’d prescribed the offending antibiotic in the first place. After a quick exam, this physician assured us that Darrah couldn’t possibly have pseudotumor cerebri, because “she hasn’t lost any vision yet.” Nevertheless, he advised us to switch to a different antibiotic, for which she wrote out a prescription.

Gingerly, I took the piece of paper, as though it might burst into flames. Once home, I ran upstairs to the computer for a second opinion. Entering the name of this new antibiotic into Google, I scrolled down to “rare complications” and saw two words that, literally, made my jaw drop: Pseudotumor cerebri.

I felt a jolt of pure rage. At this point, two doctors had shrugged their shoulders at my daughter’s, apparently severe, neurological symptoms. On the other hand, who was I to diagnose a medical disorder–on the Internet, no less? I was a health dabbler at best, and a knee-jerk pessimist to boot. Plus, this is a rare disease, I reminded myself. Rare means hardly anybody gets it. Then another voice rose up, urgent, unbowed. But it means some people do.

I remembered reading somewhere that medical students are taught to diagnose disease according to the following principle: “When you hear hoofbeats, first think horses, not zebras.” Translation: First assume a common malady, not a rare one. When my daughter’s doctors assessed her symptoms, they heard horses. But I couldn’t help it: I was hearing zebras.

Maybe, it occurred to me later, this gets as close to the heart of parenthood as anything–the capacity to hear zebras when our children are at risk. It’s as though invisible antennae sprout and unfurl, equipping us with a capacity for sensing danger that we never knew we had. It no longer mattered to me what these doctors believed. I heard zebras. They were galloping closer. Soon, I knew, they’d thunder into view.

And that’s how, a week later, Darrah and I found ourselves at the neurology department of the hospital of the University of Pennsylvania. “Inside my head, it sounds like ‘The Telltale Heart,'” Darrah told Laura Balcer, the young neuroophthalmologist on our case. Dr. Balcer listened carefully, ran Darrah through a battery of neurological checks, then trained her tiny ophthalmoscope into my daughter’s eyes for what seemed like an eternity. Finally, she leaned back on her stool and gazed at us, her blue eyes sober.

“There is a rare condition,” she said, “known as pseudotumor cerebri.”

I looked quickly at Darrah. She waited, perfectly still.

“But,” continued Dr. Balcer, “it seems to be resolving on its own.”

“Yes!” burst out Darrah. I sat in stunned silence as this doctor explained that, sometimes, antibiotic-triggered pseudotumor cerebri simply reverses itself, especially if the patient gets off the toxic drug fast enough. Sweet visions of ordinary life flooded my brain–no lifelong headaches, no eye damage forever clouding my daughter’s world. In the weeks and months that followed, Darrah’s symptoms slowly subsided until, one day, they disappeared. As I write this, she’s in rural Georgia, spending her college spring break with a toolbelt slung from her hips, building a house for Habitat for Humanity.

Yet even now, I often think back to the day of our appointment with the neuroophthalmologist, after we’d heard the wondrous words: “It’s resolving on its own.” On that late winter afternoon, after dropping Darrah off at a friend’s, I walked into our darkening house and sat down at the dining room table, thinking maybe I’d open the mail. Instead, my shoulders suddenly hunched, and I was weeping.

As I sobbed into my fists, I couldn’t have named all the reasons I was finally crying. I understood only that there were plenty of reasons–for relief, for pent-up grief, for impossible good fortune. I cried because I’d let my child take a drug that could damage her, and because her body, miraculously, seemed to know how to knit itself back together. I cried because I loved my daughter so much I could hardly bear it, and simply because I’d gone so long without crying.

After most of the terror had leaked out of me, I sat at the table a little longer, wiping my eyes with a placemat. I could imagine a day when I’d wake up and wonder about nothing more momentous than my next writing deadline, or what I’d make for dinner that evening. Afterward, I’d badger Darrah to do the dishes; she’d sigh, smile, promise to do them later.

I got up from the table. That day would come. But for now, I’d stay on my watch, straining for whatever faint, wild sounds might stir the air. I’d listen, and pray for silence. 

Marian Sandmaier

Marian Sandmaier is the author of two nonfiction books, Original Kin: The Search for Connection Among Adult Sisters and Brothers (Dutton-Penguin) and The Invisible Alcoholics: Women and Alcohol Abuse in America (McGraw-Hill). She is Features Editor at Psychotherapy Networker and has written for the New York Times Book Review, the Washington Post, and other publications. Sandmaier has discussed her work on the Oprah Winfrey Show, the Today Show, and NPR’s “All Things Considered” and “Fresh Air.” On several occasions, she has received recognition from the American Society of Journalists and Authors for magazine articles on psychology and behavior. Most recently, she won the ASJA first-person essay award for her article “Hanging Out with Dick Van Dyke” on her inconvenient attack of shyness while interviewing. You can learn more about her work at www.mariansandmaier.net.