It was one of the proudest moments of my life: crossing the finish line of the Bike MS 150 after cycling 100 miles between Cherry Hill, NJ, and Ocean City, NJ, in less than a day. A fundraising ride for multiple sclerosis—in honor of my mother-in-law—may not be the Tour de France, but it's a miracle I could even get on a bike, much less complete a “century,” as it's known in cycling parlance.
Fifty-eight years ago, on a rainy day in October on my parents' 15th wedding anniversary, I came into the world. I wish I could say I made a grand entrance, but my birth was met with silence. Happiness and joy drained from the room. Something about me was terribly wrong: There was a large hole in my back, and my head was out of proportion to my tiny body. My oldest brother told me years later that a nurse baptized me in the delivery room “just in case.”
My parents were informed that I had spina bifida and hydrocephalus, conditions that leave many children physically and developmentally disabled. The doctor referred them to a pediatric neurosurgeon at Children's Hospital of Philadelphia. Within days of my birth, I underwent surgery to have the hole closed in my spine and a shunt implanted to drain the cerebrospinal fluid that builds up around the brain in hydrocephalus.
The operation was a success, but the surgeon cautioned that I would need crutches or a wheelchair to move around and might eventually end up in an institution. According to family legend, my mother said, “We're not putting Joey in an institution,” and took me home.
Despite the surgeon's warning, I hit all the major milestones—crawling, standing, and walking—in the typical time frames. I even began reading before kindergarten. Over the next 10 years or so, I underwent six more surgeries to lengthen the catheter running from the shunt to my stomach. When I was 13, the surgeon performed a final shunt revision.
I have since gone on to live an otherwise unremarkable life. I got good grades in school, went to college, and embarked on a career in journalism. I met my wife, Lori, in 2003, and we were married two years later. We live, love, and argue like any other couple.
When I read that the surgeon who performed all my operations had died, I felt an unexpected sense of nostalgia. My twice-yearly checkups had been daylong pilgrimages to his office with my parents. After my X-rays and EEG in the morning, we would wait to see the doctor in the late afternoon. He would lift me onto the exam table and review the X-rays with me, pointing out the L-shaped shunt in my head and the catheter snaking down the front of my ribs. I waited anxiously to hear if he would see me again in six months or if I needed another revision. I dreaded the hospital and the awful smell of the ether they used to put me under.
Recently, Lori and I visited Philadelphia's Mütter Museum, which houses a large collection of preserved anatomical specimens, models, and medical instruments. We were fascinated by the slices of Einstein's brain, the “Soap Lady” (a body exhumed in 1875, encased in a soapy substance), and scores of other medical artifacts.
But nothing prepared me for the shelf of jars containing the preserved bodies of fetuses from the early 20th century, their heads grossly inflated by hydrocephalus. The realization of how those childhood surgeries changed my life struck home in a way it never had before. I found myself sobbing on Lori's shoulder.
“That could have been me,” I finally said, wiping my face with my sleeve. Instead, by the grace of God and the skill of a surgeon whose invention has helped innumerable kids around the world—including me—I've been able to live a happy and perfectly ordinary life.
That beats finishing a century by a mile.
Joe Jalkiewicz lives in Marlton, NJ, where he makes his living as a freelance medical writer and editor.
