The Pain of Dwarfism Becomes a Catapult to Inner Joy

As I drew my first breath, the doctors and nurses held theirs. Mom was sweetly anesthetized when they labeled my condition defective. With the long Latin name of spondyloepiphyseal dyplasia, I would now be viewed under the microscope of doctors, bullies, and the wide-eyed world. But this same dwarfed body, complete with degenerative arthritis , would one day become my most noble teacher. Adversity is so fascinating that way.

By the time I was nine, arthritis had set into my joints leaving my hips and knees painful and stiff. My back became as curved as the question marks that defined my world. I was terrified I’d never get the good things in life, never be taken seriously, never find a safe place in the world.

My devoted parents took me for regular visits to the Center for Birth Defects to chart my progress. But one year, we attended a genetic research convention instead. That morning, as a doctor led me down the hospital hall, I felt my shame. I had something the specialists were trying hard to eradicate.

"We're going right in here," the doctor said, his toothy smile going first through the double-doors. There was so much noise in the room until the sea of white-coats saw me. Big smiles replaced the chatter. They wanted something.

Dr. Simon introduced himself to me and then turned to address the group. "One in a hundred thousand births are affected yearly by spondyloepiphyseal dysplasia, a congenital defect. Here we see the proportionate short-statured S.E.D. with short trunk and proportionate limbs."

Dr. Simon asked me to turn sideways and raise my arms. "Note the curvature of the spine, pelvic abnormalities, degenerative changes in hips and misaligned knees. There are irregular epiphyses and abnormal growth of the long bones." He paused for a second. “Julie, could we stand you on this table? We just want everyone to be able to see your pretty face."

I wanted to be good, even for the white-coats. On the inside I was screaming NO, but instead I answered yes. Then someone grabbed me under my armpits and lifted me into the air, up on display.

Dr. Simon continued, as another doctor turned and twisted my limbs. His hollow voice magnified my flaws. Clipboards bobbed. Face after face examined me, nodding as they scribbled notes. They looked so intently, but no one saw. I drifted away as the labels anchored inside. Abnormal, deformed, defect. The gods of medicine had made their decree.

We just want to look at your pretty face.

When they were done, I was brought back to my parents, a lost wallet whose contents had been impersonally scanned and then returned. My I.D., though, had been left behind. For years I never even knew it was missing.

I battled with sadness, rage and devastation as I madly searched for my worth in the eyes of others. But when I found no peace there, I began the journey inward. After screaming at the rain since my childhood, I realized that I needed to calm the storm inside. Maybe my happiness didn’t depend on my outer circumstances but on how I’d been interpreting them. As I began to ferret out my distorted views of myself, I realized that the most painful limitations had become self-imposed. I had been wearing my difficulties as armor, trying desperately to keep any further pain out. I just didn’t know I was keeping the love out, too. The only thing standing in the way of joy was my own disbelief. That was a habit I could change.

At twenty-nine, in the midst of great inner progress, my arthritic legs became so painful that I landed on crutches full-time. Although I’d been running from doctors for years, I had no where left to turn. Both hips and both knees were skillfully replaced over a three month period. Being thrown back into the medical world, where I felt like a defective specimen, unearthed the panic from my past. The emotional and physical pain was overwhelming. I swore I would never return.

But life has a funny way of bridging us back around to face ourselves and find peace . Since the age of twenty-three, I’d had a condition called Hemifacial Nerve Spasm (HFS). A compressed nerve at my brain stem had been causing a painful and uncontrollable jitterbug across my face. It contracted all the muscles on the left side of my head, from the top of my scalp down through my neck, and bolted my left eye closed. My face jerked into spasm every five minutes, subsided for five minutes, then repeated the cycle. All day, all night.

My nerves were short-circuited and on constant high alert. It was a mirror of how I’d been looking at myself -- a humiliated, defective, out-of-control freak. The inner work, though, helped me to recognize I had a choice. I could see the HFS as a curse or as an opportunity. My first realization was that, compared to the constant spasms, being a dwarf was a cake walk. It rarely bothered me at all any more. The HFS had turned me upside down, helped to empty out my insecurities and find what was real. Underneath there was love, compassion, and courage. The challenges were lighting my way.

I went online and discovered Microvascular decompression (MVD,) the surgery to correct HFS. I contacted Dr. Amin Kassam who had helped pioneer MVD. When he examined an MRI of my skull, he noticed something rare. An Arnold Chiari malformation (ACM) was putting slight pressure on the underside of my brain. The ACM was located in the neurosurgeon’s MVD work area, which is the size of the head of a tack. The ACM made that area even smaller. Dr. Kassam would have to remove a two inch by four inch chunk of bone from the base of my skull to improve the odds for a successful MVD.

Believe me, I never thought I’d choose two risky neural surgeries and I certainly never imagined that I’d trust the white-coats in one of the most dangerous areas of the brain: the cerebellopontine angle. The possible complications were facial paralysis, cerebral spinal fluid leak, hearing loss, vertigo, and stroke. As with all surgeries, there was the chance I wouldn't wake up. Yike.

In the sixteen years since the HFS began, I had found a wonderful husband and we now had a precious two-year-old son. Becoming a family was the most amazing and important journey we'd ever charted. Was I crazy to put my brain under a surgeon’s knife?

My moments of fear were short-lived, though, compared to the peace that had won me over. In changing my attitude , perceptions and choices, all dreams seemed possible. By forgiving my own weaknesses and finding my strengths, I saw myself, and the doctors, with new appreciation. I wasn’t bad and I wasn't being punished. I decided the universe wanted me to win.

After my first surgery, I had seventeen stitches down the back of my head. Dr. Kassam, my knight in a shining white-coat, had successfully corrected the ACM. Eight weeks later, I returned for the big hurdle. Microvascular Decompression. The cranial nerves would be padded with bits of teflon, therefore decompressing the brain. Put that way, it actually sounded kind of good.

After surgery, and two days in the ICU, my head felt like it had been pounded with nails. I had fifteen stitches behind my ear. But the twitching was GONE. I started smiling at everyone, everywhere. In the elevator and down the hall, I just beamed like a xenon headlight. What a wonder to be free!

A few months after the mind-boggling neural surgeries, I noticed a hospital bill. It read, “Suboccipital craniectomy with C1-2 laminectomy and duraplasty . . . repair skull defect.” I waited for the familiar ache. But there was none! I reread the word that had once defined me. Defect. But where a sad story once reigned, triumph now sat in its honor. All at once I felt like an honored guest in my own body.

These days I barely recognize my old self who drew big generalizations from little understanding. Somewhere along the way, I realized that being human is a handicap for everyone, whether our scars are visible or not. If we’re willing to let go of the masks and self doubt, we can find the beautiful spirit within.

The choice for inner joy helped me find purpose in my pain and turn troubles into treasures. Those I thought were my enemies became allies. Grief moved toward healing. Fear turned to joy. My bonsai body had not been in my way; it had shown me the way. Well what do you know.