Made in the Image of God?
A seeker finds the answer in a life marked by more than his "difference."
Under the cover of a harvest moon and quietly, I was born in the early morning of September 28, 1955: almost exactly 48 hours before James Dean crashed his Porsche Spyder and was violently evicted from this mortal coil.
A slap on the ass was my only fanfare and from a doctor who didn't know me well enough to justify such immediate familiarity. I imagined my mother shrieking, "My Lord! My son! What have you done with the rest of him?"
I must have been a sight: looking more like a plum that had withered to prune before its time rather than a little boy. Initially, there was a consideration of hydrocephalous. Achondroplastic dwarfs are born with larger, oblong craniums to give an impression of Mongoloidism, or "water on the brain." So with metal claws that otherwise might have been employed to tote blocks of ice, my head and my body were measured and measured again, from side to side and stem to stern, before any consensus about the disposition of my surprising physiology could be made.
Sonograms, amniocentesis, or any such Fetal Positioning Systems (FPS) meant to predetermine the sex or health of an unborn child were technologies foreign to the medical constabulary in 1955. Regardless, even if intrauterine tracking devices had been available, I suspect the layers of religious sediment binding my family circle would not have allowed them to be administered.
Childbirth was an offering from God. If the child emerged intact then the opinion was His will had been executed and you were being rewarded. However, if there was a glitch or a circuit misfire, then someone was somehow not "right with Jesus." Thus, the imperfect child was perceived as a penance to be embraced and raised in a lifelong agonizing attempt to please God. "You are one of God's special people." Woe is me the number of times I heard that one.
I was born during the postwar American promise, where families who played by the rules could expect a house with a white picket fence, a pair of Chevrolets, and the standard issue 2.5 children. I was the .5 child. The balance of 2.0 children was still to come.
In 1955, superstition surrounded dwarf-ism. Accordingly, there were no support groups, no open forum for my parents to talk about their fears and frustrations. They did the best they could, the best they knew how. No expense was spared to ensure my life was to be abnormally normal.
Once, as a child, I became angry because I couldn't run or swim or ride a bicycle as well as my friends. A relative — in a clumsily orchestrated effort to reassure me and carve me normal — reminded me of how I had been made in the image of God.
Quicker between the brain and mouth than I ever was between the starting line and the finish line, I queried legitimately, "Does that mean God is a dwarf too?"
"Is God a dwarf? Absolutely not! God is not a dwarf and you should be ashamed of yourself for asking such a question. Now go to your room."
I have learned some hard lessons in the journey to embrace the difference between who I am and what I am. The longest distances I have traveled were never to places like Sarajevo or Mogadishu as much as they were distances to link my heart to my mind and my fiction to my fact.
So it may come as a surprise that I am pro-choice. Many surmise that to be pro-choice is to be pro-abortion. This is not the case for me. It is just that after a lifetime of being prodded and poked, dissected and diverted by teachers, doctors, psychiatrists, and the retinue of impassioned interlopers with noble intentions who sought to "fix" what was wrong with me, I was beginning to sense how the world was killing what was right with me.
Therefore, I believe any woman who is of sound mind should have sole custody over the comportment of her own biology. Her womb is sacrosanct. Her decisions should not be legislated or regulated by political deliberation or by religious admonishment. A sound woman's right to choose is fundamental to any freedom by which we as a nation would dispatch a warrior to protect and to fight and die for.
I do not believe a woman who becomes pregnant via rape or incest should be legally or morally obliged to carry the fetus to term. Also, if in the first trimester, it is discovered that to carry the fetus to term would present harmful or even lethal complications to the mother, her decision whether to take the risk or not should be supported once all of the facts have been assembled and understood. I will even go so far to say, I would not seek to interfere with a woman's decision to abort her pregnancy if it is determined the child will be born with an insurmountable physical or mental defect. I know how cruel the world can be. After 20 years of making a life in Southern California, I have come to terms with how society defines beauty and success.
Hollywood exports fantasy, the same way Detroit exports automobiles and Milwaukee delivers beer. People die in cars and they die from drinking too much beer. However, the very fulcrum of our national sex appeal and confidence is identified by wheels and brews. People don't die by ingesting too much fantasy. They only die when they cannot separate the truth of a perfect life from the illusion of a perfect life.
James Dean, Elvis Presley, Judy Garland, and Marilyn Monroe did not die as movie stars or celebrities. They did not die gloriously or as an illusion. Their deaths were all human and they were all tragic. Still, people everywhere are anchored to a desire to be just like them. Why? Is it so impossible to be happy with a normal life? I am, and my life has been anything but.
Twenty-five years ago, my mother introduced me to a lovely woman whose husband had just abandoned her. It was not for infidelity or irreconcilable differences. He left her because their first-born child, a beautiful daughter, was a dwarf. He couldn't deal with it. He ran away from his life and he never returned. Yet I could see and feel how the woman found more joy in the love she had for her little girl than she found pain in her husband's desertion.
Six years ago on a flight from Mexico City to Brussels, I encountered a woman who confessed she was coerced into aborting her child when she and her husband were advised of an irreparable facial defect afflicting the baby. Her grief was forged like a dry riverbed across the contour of what was once a beautiful face. I saw how she had been crying tears of gin and was desperate for absolution. She even asked for my forgiveness, as if by what she had done to her own unborn child she had, in turn, also done to me.
Last May before I left California for the summer writing program at Yale University, I camped out with my best friend in Santa Barbara. This is when I met Teddy.
Teddy was in his mid-twenties and was quite mischievous. He had a great smile and clear eyes which seemed to absorb all of the beautiful colors offered to those who are lucky enough to find themselves nestled between the ocean and the mountains of Santa Barbara in the early springtime.
Teddy and I took to each other almost immediately. Maybe it was because I never saw or looked at him as anyone other than my friend. He didn't look at me any differently either. Teddy — a quadriplegic from birth — couldn't walk, couldn't talk, and couldn't breathe without assistance. His only independence was a little geriatric scooter to which his oxygen tank had been affixed. His breathing was labored and through a tube that was inserted into an opening in his trachea. He controlled the vehicle with his mouth.
Teddy took great joy in the cans he collected from the neighbors and recycled to buy candy bars at the drugstore. That's how we met for the first time. In my car there was a veritable cache of empty Red Bull cans. I had the mother lode of tin and he was ever so insistent I bequeath them to him. I did.
Teddy and I will always be friends. Yet his only real advocate was his mother. She did, and had to do, everything for Teddy. Every day around noon, a medical van would pick Teddy up to take him from one therapy session to another. His mother didn't go with him. She needed these hours to recharge.
Careful to neither impose on nor offend her, I dared to engage his mother in conversation. I was moved to tears when she told me she knew what was in store for Teddy before he was born. "It never crossed my mind to abort him or abandon him," she told me. "He is the love of my life, and my world is so much the better because of him." She was telling the truth.
This prompted me to wonder what my own mother would have done had she known at the time — and in those times — I was going to be born a dwarf. She, too, with candor and honesty assured me she would never have aborted or deserted me.
There have been many times, however, when I knew my mother's world was not made better by me. I know there were moments when she might have wished she had made a different decision. After many years of practice, I have come to understand how her life was not so much impacted by my dwarfism as it was by my jerk-ism. I was a huge pill to swallow and not because of my physical architecture, and I made her swallow this pill much more than I would ever care to recount.
I will not endeavor to plagiarize the romantic swagger of Sinatra when I suggest I do things my way, but my life is an adventure. It is a wonderful mixed bag of travel and experience. My life is woven into the threads of a colorful tapestry of disaster and exhilaration. I am among the lucky few.
Billie Holiday could have been singing about me, or about Teddy, or about any number of others out there living life in an image of God carved a bit differently when she sang, "God bless the child who's got his own." God bless the child like me. — For Teddy