Stepping Back From the Edge

By Bill Ventres 12/16/2011

  I can walk.

It’s not pretty. It’s not easy. It’s not without assistance. But I can walk.

Six weeks ago, I wasn’t able to walk. A few days before that, I’d begun a visit to the city of Antigua, in Guatemala, and was enjoying its colonial ambiance with friends.

Then, after a brief bout of sore throat, I contracted Guillain-Barre Syndrome, an autoimmune disorder that afflicts the peripheral nervous system. My body’s defense system, its antibodies triggered by the offending virus, had decided to attack the nerves in my arms, legs and trunk.

Upon awaking at 7:30 am on November 2, 2011, I could barely get out of bed. On rubbery legs, I made my way to the bedroom door to call for help. Six hours later, I was 99.9 percent paralyzed from the neck down.

In twenty-five years of practice as a family physician, I had never seen a case of Guillain-Barre. And in all honesty, I couldn’t remember any statistics associated with the illness, such as the fact that it affects about two in 100,000 people. I only remembered that it came on quickly and could have devastating effects, which I was experiencing already.

The consulting physician at Antigua’s small private hospital told me that there were no artificial respirators in town, and that I would need to be transferred to a place where one was available. After all, he noted, given how fast I was worsening, it was probable that sometime over the next twenty-four hours I’d be relying on such a machine to do my breathing for me.

With that information in mind, I decided to bypass Guatemala City’s hospitals and return to San Salvador, the capital of El Salvador, where for the better part of a year I’d been teaching master’s students in public health at the University of El Salvador.

Before making the trip, though, I needed to choose which hospital to go to. I considered San Salvador’s national public training hospital, but my employers at the Fulbright Commission sent an unequivocal message: I should go to the city’s one luxury hospital, favored by wealthy residents and the local American military and Embassy personnel. I could have asked to be airlifted back to the States, but knowing that my grown children were scattered across two other continents, and feeling my own strong bonds with my Salvadoran friends and adopted family, I felt that my life was here.

A seven-hour ambulance ride (with a physician and portable ventilator by my side) brought me to the hospital. I was met on arrival by an intensive-care physician who is also a colleague and friend.

In an effort to overwhelm my errant antibodies, he started me on high-dose immunoglobulin therapy. Unfortunately, this didn’t have the desired effect; the nerves supporting my diaphragm had been severely damaged by my body’s mistake, and within two days, besides being unable to move or swallow without difficulty, I was also laboring to breathe.

Ironically, my ordeal took place in amid supremely comfortable surroundings–a private room that featured a large-screen TV, room service, great food and a bed for my kids when they flew in to visit.

I am a lucky man. I managed to avoid being intubated, and six days after being admitted, I slowly began to regain my ability to inhale and exhale without a struggle.

Each day that followed brought some new return of function. Little had I known how much it would mean to be able to move my little finger, swallow without effort or sit up unassisted. Every new gain took on special significance, as a light along the way back to defining myself not as an illness but as a person, a survivor.

I don’t really know what triggered my improvement. Perhaps it was the immunological treatment; perhaps the illness simply ran its course, stopping short of completely shutting down my capacity to breathe. My adopted Salvadoran family believes that destiny played a part in both my succumbing to the illness and my recuperation. “Everything is written,” they said. “It is all part of God’s plan.”

For my part, I believe that two forces have played important roles in my recovery, which is still in progress.

First, I am convinced that a certain inner strength helped to buoy me when things looked bad. I’m not sure I can identify its source, but it comforted me when there was little I could do besides lie there and hope that I wouldn’t be among the nearly one in twenty people who die from Guillain-Barre. It calmed me when I felt anxious, hungry for oxygen. My prayer and mantra, between gasps, was “May I be strong.”

Second, I have felt the power of the kindness shown to me by others. The kindness of a resident physician who reached out to shake my motionless hand and continued to hold it as he asked about my medical history and condition. The kindness of a nurse who massaged my feet as she trimmed my toenails–a gesture of humble yet profound caring in the face of my devastating loss of control and power. The kindness of family and friends and colleagues from around the world who sent emails full of hope. I am embarrassed to say that, before now, I never knew how much they cared. I feel deeply grateful for their words of encouragement.

When I return to the clinical practice of medicine, whether here in Central America or back in the US, I will take these remembrances with me. And I will recollect the myriad thoughts and feelings that came to light during my incapacitation. Guillain-Barre affects only the peripheral nervous system; it leaves the mind free to explore fears and worries, joys and pleasures–a whole spectrum of ideas and emotions. I will recall the terror of imagining that my next breath would be my last, and the refuge of knowing that I am loved.

I’m fond of recalling the words of Octavio Paz, the Mexican poet and Nobel laureate, in his book The Labyrinth of Solitude. Love, he wrote, is “a perpetual discovery, an immersion into…waters of reality.”

I am experiencing such an immersion and discovery right now, as I go about building new foundations of strength and endurance.

I know that my recovery will take time, perhaps months or even years. Yet, having faced the acute challenges of catastrophic illness and felt the outpouring of love from others and from within myself, I feel Paz’s words ringing within me more poignantly and richly than ever before.

May I take them with me as I return to my own state of normalcy. May I hear them when I attend to others in their hour of need.

And the next time it is my turn to know suffering–the next time when, literally or metaphorically, I cannot walk–may I remember them, and find peace and contentment.

So may we all.

About the author:

Bill Ventres is a family physician and medical anthropologist. In late 2010 he left Portland, Oregon, for the city of San Salvador, in El Salvador, to teach in the University of El Salvador’s master’s in public health program as a visiting research professor, funded by the Fulbright Commission of the US Department of State. His favorite number is now fifty-three, given that in this, his fifty-third year of life, he has experienced a succession of life-changing experiences–living abroad in Latin America, returning to the US to care for his mother in a hospice program, becoming engaged to a wonderful Salvadoran woman and, of course, contracting Guillain-Barre Syndrome. These and other adventures have offered him new perspectives on joy, friendship and the deeper meanings of life. He is profoundly grateful.

This story was originally published in Pulse–voices from the heart of medicine.

Story editor:  Diane Guernsey