Guillain-Barré: How I Got Back on My Feet

Seven years ago, on a trip to Vietnam, I stepped into the warm water at Nha Trang beach, eager to relish my first swim in the South China Sea. But I didn't get very far: a knee-high wave—hardly a wave at all—instantly toppled me. As I tried to stand, my legs buckled, and my traveling partner had to help me up. Besides feeling off-kilter, I was perplexed. A devoted lap swimmer for 15 years, I had powerful legs that propelled me past many younger men at the pool. Now all my strength seemed drained away, washed out to sea by foreign currents.

As sand and foam swirled around me, I wondered if the rice wine mixed with turtle blood, served by my Vietnamese hosts the night before, had made me sick. Or was I merely overcome by a case of extreme travel fatigue? Reassured by my health-conscious regimen—lean diet, vigorous exercise and meditation—I dismissed thoughts of anything more serious. Both sides of my family boasted hardy long-lifers. My great-grandmother chopped wood until she was 85, then quit out of boredom. A year earlier, when I was 39, my doctor had given me a physical and declared, "You're still considered a young man."

But then I took another inexplicable spill in Vietnam. As I rose from my seat in a village café, my legs failed again. Out of stubbornness and denial, I didn't seek medical attention until returning to California, two weeks after my first fall at the beach.

Back at home, I could barely stand in the emergency room. My legs and hands were entirely numb. The ER doctor concluded that I'd contracted an exotic virus in Asia. "I'll have the infectious disease specialist call you," he said, signing my discharge papers. No one ever called. The next day I fell on my face when the lower half of my body seemed to evaporate without warning.

Using my weakened arms, I managed to push myself up from the floor. I called my friend Luci, whose twin sister Judi is a pediatrician. Luci took notes, relayed the information to her sister and called me back an hour later. "Judi says it might be Guillain-Barré syndrome," she said. "And if it is, it's serious." Luci had spelled out the unfamiliar words, which sounded, to me, like the name of a French-Canadian pop star. Ghee-yawn Bah-ray. I searched the Internet and found stories that mirrored my own: numb limbs, muscle weakness, decimated stamina and sudden falls. Guillain-Barré, I learned, was a rare disorder in which the body's immune system goes haywire and attacks the peripheral nerves, thwarting conductivity to and from the brain. Patients with the most severe cases suffer permanent paralysis or require respirators.

One online bulletin board contained tale after tale of misdiagnosis. In 2003 a team of immunologists published a retrospective diagnosis of Franklin Delano Roosevelt in the Journal of Medical Biography concluding that FDR probably had Guillain-Barré, not polio as previously thought.

With luck, I got an immediate appointment with another doctor. "I have Guillain-Barré!" I blurted out when the internist greeted me, but the doubt clearly registered on his face. "I've seen only one patient with that," he said. Like an ambitious med student, I recited a precise, methodical account of my symptoms. The stunned doctor then examined me. I had no reflexes, and I had to grip the table when he asked me to stand.

"Wait here," he said. "I'll be right back."

Minutes later he returned and ordered me to go upstairs to see a neurologist, who shocked my limbs with electricity and measured the response of my nerves and muscles. After a final 80-volt zap, she confirmed that I indeed had Guillain-Barré, which has no cure—except time, if you're lucky. The cause remains unclear. Though scientists have not isolated a cause, Guillain-Barré is often preceded by a viral or bacterial infection. Two weeks before traveling to Vietnam I received three vaccinations while recovering from a cold, a combination that might have caused my immune system to misfire.

For a time I regarded my condition as a twisted, hostile betrayal. Defying expectations, my body had embarked on a blundering, self-destructive path—a siege against the self. I could no longer rely on the energy and drive associated with my identity. One day I was helping run a Silicon Valley company and the next I couldn't open a package of cookies.

For a year my legs and hands remained numb and episodically paralyzed. I'd try to take a few steps, thinking that everything was fine, and then, like an infant learning to walk, I'd tip over. For days I lay on the couch, unable to move. I woke from 16 hours of sleep and felt as if I hadn't rested in weeks. Profound exhaustion prevented me from talking on the phone for more than five minutes. Unable to properly grasp a pen, I watched my handwriting regress to a young child's scrawl. It made my work life difficult. I was frequently too listless to be effective, so I would leave the office on my compromised legs and go home to sleep. Fortunately, my employer was sympathetic.

The recovery period for Guillain-Barré can be weeks or it can be years. In my case it was the latter. Over the next several years I eventually regained the full use of my legs and a portion of my stamina, although climbing the subway stairs in Manhattan, where I now live, wipes me out, and sometimes I stumble while getting out of a chair. But my friends take delight in noting that I'm once again a fast walker, even by New York standards.

When I started swimming again I couldn't finish one lap, and certainly not in a straight line. But while submerged in water—that vital, miraculous dimension—I felt liberated from my illness. In Vietnam a wave had knocked me to the ground, but now my leaden fatigue seemed to dissolve in the beautiful blue. I built up strength gradually and began to swim faster. Secretly I believed that speed would inject my body with its former powers.

These days I swim not to beat my personal best or to compete with the person gliding past me. Instead I dive into the pool to savor the simple, pure act of traveling through water, and to emerge 20 laps later, exhilarated by possibility.

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