Dwarf Learns To Stand Tall In A World Of Giants

(John Wolin is a sports editor at The Miami Herald. This story was written shortly before surgery that was performed to try to prevent paralysis of his arms.)

Doctors at Johns Hopkins Hospital in Baltimore are about to cut into my skull to get at my spine.

I am an achondroplastic dwarf. What you see is someone 4 feet 7 inches tall who walks as if he were drunk and bowlegged.

What you don't see is a spinal canal that is too small, a congenital defect that robs me of my mobility. My legs are very weak. I wear a brace on my right foot that prevents it from flapping. I fall down sometimes.

The operation will be the 11th of my life.

Dr. Sumio Uematsu, who will perform the surgery, also cut on me four years ago, beveling the spinal canal 13 inches, from my fanny up through the middle of my back. That time, doctors were trying to save my legs from a battle with paralysis. This time, they want to make sure I don't lose my arms to paralysis.

Each of my five back operations has seemed so important - the first one on Christmas Day 1968; the three most recent ones, all since my child was born almost eight years ago.

But this operation may be the most critical of all.

I have learned to get around on wobbly legs - I walk with a cane and own a wheelchair. But I do not want to learn how to get along without my arms.

For now my arms remain strong. I have been having pain at night much like the pain that lives in my legs, pain that sometimes overwhelms, pain that sometimes just grabs my attention and then backs away. Mostly my pain robs me of sleep, and then attacks with even greater strength the next day.

But this arm pain is different in that I can't really explain where it hurts; the doctor calls it diffused, and says it comes from pressure at the base of the skull.

Two diagnostic tests at Baptist Hospital told the doctors at Hopkins it was time to cut.

I earn my living as a journalist. Whatever skill I possess is expressed by fingers that can jump across a computer keyboard. I often work under great pressure that requires a harmony between my mind and hands. I could not do my job were my hands not able to keep up.

My work also allows me a sense of worth. And my friends at work are the best I have. If the strength in my arms is taken from me, then much else also will be stolen.

I do not know what I would do if I could not hold my wife and child in my arms. I know they will continue to love me no matter what happens. But I do not want to lose the ability to return their hugs.

As I sit on the floor of the shower each morning getting ready for work, I am also bathed by recollections of waking up in the recovery room, or being prepared for surgery, or trying to learn how to urinate again after being catheterized. There is no order to these intruders, only a common theme that reminds me that some difficult times lie ahead.

I believe I can honestly say I do not feel sorry for me. I have seen too many too hurt to believe that I am special or that my problems are significant outside the world formed by those who love or care for me.

I'm a guy who begs to blend in, but loves to be different. I've done a lot of things others haven't, have fought and won battles they may never imagine.

But I never picked up a woman at the coin laundry, never dunked a basketball or even really shot a lay-up. I have always had to use a ladder to adjust the shower head, and when I went to rent my tuxedo for my high-school prom, the tailor said I would have to find three friends who would also rent from him or he wouldn't take my business. (The hem on my pants came to my thigh, and he wanted a couple of easier customers to make the work worth his time.)

My friends say they've become blind to my height, but there are moments I focus on it as with tunnel vision. I understand the curiosity it spawns in children, though that understanding sometimes fails to dull the frustration of having a child unabashedly follow me around a department store.

I have an almost-8-year-old daughter, Lindsay, who is normal in every way except that she is uncommonly beautiful and kind. My wife, Glenda, does no less than give direction and meaning to my life. I aspire most to be the best husband and father I can be.

Being short and feeling hurt makes that hard. There's a great deal I cannot do, and sometimes that frustrates the hell out of me.

The doctors had warned me at the time of a back operation in 1987 that at some point, the narrowness of my upper spine could cause a problem.

Then several months ago, I began dropping things: my favorite mug at work. A couple of nights later, I dropped my keys, and when it took several tries to pick them up, I knew.

Medicine has been a big part of my life.

My parents sought out physicians from one coast to the other in an attempt to help me grow, but achondroplasia is a genetic malady with no known cure. When my parents and I first sought help, in fact, achondroplasia was mostly ignored. Those afflicted often found themselves either hidden away or in the circus.

During my adolescence, I was one of the first children to be treated with human growth hormone. My father helped found the Pituitary Foundation of America, which supplied physicians with glands from deceased donors, which were then processed to produce the hormone.

I spent most of my school vacations from the time I was 10 until I quit growing at about age 18 at the National Institutes of Health, outside Washington, D.C., and the University of California at San Francisco's Moffett Hospital.

My roommate my first summer at NIH was an older guy named Peter, who taught me dirty words and other wonderful things. He was 14 and had leukemia.

The hardest time we ever had came one spring when my father took us to Griffith Park to see the old Washington Senators open the season against the Boston Red Sox. This kid in front of us ate every single thing offered at the park, downing a hot dog, ice cream, popcorn, peanuts and a bunch of drinks. But we were on a special diet, and could only have distilled water.

Based on my projected height before I began treatment with human growth hormone, doctors believe I grew seven additional inches. For that, and for the experience itself, which helped prepare me for the future, I am grateful.

I was 21 when I became crippled. The paralysis gained on me slowly in the weeks following a tackle football game.

I was playing nose tackle for a fraternity team. A keg and $50 rode on the game. New players soon learned that the dwarf lining up off the ball was no joke. My arms and legs were short, but strong. Without ever working at it, I could bench press 180 pounds. I used to win bets in bars by doing 100 push-ups in a minute. Drunks would throw half-dollars.

Inevitably there came a tackle that bent me like a bow. I got up slowly, the effort leaving me woozy.

I left the game but returned a few plays later until I began to feel very hurt. When I got home, I told my father, who long ago had forbidden me to play football, that I finally had learned my lesson and would give up the game.

In the next few weeks, I began having terrible pains in my lower back, but never imagined what was coming.

After the first operation, I remember looking up from the hospital bed and asking my brother, on whose face I could not even focus because of all the drugs in my body, to bring me some roach poison so I could kill myself.

As a youth, I had dreamed often of waking up one day a new man, 18 inches taller and able to play college football. Instead, my transformation had laid me flat. And I had to deal with the possibility that I might be paralyzed for life.

Several operations later, I met John Hardy.

In a sense, the doctors had completed their task - physically altering my spinal canal to take the pressure off the spinal cord. But a great deal of nerve damage had already been done.

As my physical therapist, Hardy would take over, helping me coax strength back into my legs. He would become the most important person in my life over the next couple of years.

Hardy and I meshed from the first day: I was willing to do anything he wanted, and he was full of tricks. Even before my braces were made, he would wrap my legs in old magazines and bandages and make me pull myself through the parallel bars.

I became a regular at Hardy's offices, eventually going six days a week from opening to closing.

Hardy worked with me for a few years until I graduated from college. A good friend of my father's gave me my first job on his newspaper in Junction City, Kan.

By that time, the brace on my left leg was gone; the one on the right remained, as it does today, though it reached only from foot to knee.

I continued to improve physically, and two years later I was hired by The Fort Lauderdale News. and then by The Miami Herald as its Broward sports editor in 1979.

When Glenda and I were married in 1978, many of our friends didn't realize the full extent of my disability. When my legs began to buckle as I stood during our wedding, the pastor, who knew what I had been through, simply "went to a faster service."

Our abbreviated vows came three months after our first date.

We had known each other from afar, having worked at different ends of the same newsroom for a little more than a year, but really met for the first time when a friend invited us over for dinner.

I still find this hard to explain and am not sure I ever will know how she did it, but Glenda became the first woman to make me feel I was good enough to be her partner.

Simply, Glenda has made me happy to be alive.

If it were not for her courage, first in accepting me as her husband, then in accepting the possibility of an abnormal child, we would never have had Lindsay.

I owe my size to a sudden genetic mutation. As far as we know, there had been no dwarf in my family until I came along. My brother, Greg, and sister, Melissa, were normal. Thus, I had mistakenly believed into adulthood that my affliction could not be passed on, that I was a freak of nature and not a continuing genetic danger.

Shortly after marrying Glenda, I wrote Dr. Roberto Escamilla, who had led the efforts to make me taller at the University of California. He wrote back that it was a 50-50 chance that I would have a child afflicted with achondroplasia. The question would be answered at the instant of conception. I remember weeping as I held the letter in my hand. I told Glenda she could leave me if she felt cheated.

On and off for two years, we counseled with a geneticist. We talked to my parents a thousand times; after all, they had raised a short child.

Some people might think that choosing to take the chance of having a short child was a selfish act. But for my part, deciding that it would be better for a child to not be born than to be born a dwarf would have been saying that my own life had not been worth living. And if Glenda could love me, why wouldn't we both love a child with the same problems?

We never had to test the downside of those agonizing questions. Sonograms revealed normal bone structure during Lindsay's gestation. She looked very right at birth.

One day, as Lindsay and I walked toward the gate at school, Alexander, a classmate, began to giggle, then bounced up and down as he pointed me out to his buddies. A forced smile no deeper than her lips came to Lindsay's face. We walked on toward the car.

"Do you know what happened just now?" I asked. It was a moment I had feared and anticipated for a long time.

"Yes," she answered, "Alexander made fun of you."

"How do you feel?"

"A little sad and a little angry."

I am different from the other daddies. I'm short, the kind of short that rarely goes unnoticed. My being 4 feet 7 inches tall is not something we have any way of hiding.

In the years to come, I suspect that just as my parents and I shared this burden many times, Lindsay and I will talk about why I am the way I am.

When I worry about her, it's because I don't know whether the teasing hurts as much when you are the daughter of a short person as when you are the person himself.

Lindsay says I am sharing my story "to show you can live being hurt as long as you are loved."

Maybe she's right.

John Wolin underwent nearly four hours of surgery and has been recovering the past week in his Miami home. Doctors exposed 15 vertebrae and the spot where his skull joins his spine in an effort to ease the pressure and avert paralysis to his arms. Wolin said the operation was a success and he expects to be back at work in six to eight weeks.