Some Notes On My Own
Disfigurement

by Jake Brand Heldberg

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I wish someone could have told me, while still in the womb, how it would go. I wish someone could have prepared me before I was born. So I could get ready. What they told me might have gone something like this:

You will be born with a deformed right hand and not because of Thalidomide. Your fingers will be twisted, almost unrecognizable. The nurse in the hospital will ask your mother if she wants your hand covered. Your mother will say No. Leave it as it is.

At the Mayo Clinic in Rochester two small fingers were removed from my right hand to give the remaining fingers more mobility. A bone from one of my toes was inserted into my middle finger, to straighten it. Deep under the gas I believed the doctors and nurse were aliens, that the hospital, with its brightly lighted halls, was on another planet. Skin from where my legs meet my torso was grafted to my hand, so that heavy scarring will mark me for life. When I was an infant I had stomach surgery, too, and as I aged that scar moved up to my chest.

I discovered my hand was different in first grade when classmates nicknamed me "Twinklefingers," twisting the fingers of their own hands in imitation of mine. One afternoon I told my mother about this intimidation as we sat together on the living room couch. She held me as I cried. I'll remember this always because it was the last time she held and comforted me this way.

When girls ran from the sight of me in grade school I would run after them, waving my hand at them. On the school bus kids asked if my hand hurt. Instead of answering I would demonstrate how freakily I could bend back my "thumb."

I stopped doing these things when they were no longer fun.

I should tell you I was also born without a pectoral muscle on my right side. From shoulder down the entire muscle is absent. My ribcage has shifted to create a better balance and one shoulder is less broad than the other. Even in junior high the difference in my chest was apparent. During basketball practice I refused to take off my shirt. The classmate who was my main tormentor drew a caricature of me and passed it around, snickering.

At my grandparentsí house I tried to explain how it was for me at school. At least they listened, even if they told me that my classmates teased me because they liked me. I knew better. I knew that those classmates who thought of me at all believed I was stupid, halfway to being mentally retarded. For a time I almost believed it myself. I knew that some people felt sorry for me; as I grew older I worried I was so freakish no one would ever want me.

Walking shirtless to the lake in summer I was afraid that some girls might turn to see who was coming by. I could relax only when covered by the water. Hidden, I didn'tít want to come out again when it was time to leave.

When shaking hands I shake left and will do so my whole life. This was especially difficult in church when people congratulated the confirmation graduates. Once when a visiting pastor was shaking hands I gave him my right hand for some reason; he was startled. My driving instructor advised me to get a special tool for shifting gears. I did not need it. Though pull-ups in phys. ed. gave me trouble, I found my own way to lift things. My right arm will always be slimmer than my left, no matter how many pushups I do. I began to shave the skin grafts on my hand, something I will need to do every day for the rest of my life.

The summer after high school I saw a shirtless kid at a sports meet. Like me he had just one pectoral muscle. I wondered what his future would be like.

Nineteen, fresh off the farm and excited about being away from home, I made plenty of friends at college. AIDS was still far off and being young and cute it was easy for me to get laid. Still, I found that some men were uncomfortable with me.

I moved to the big city. I met a guy at a party who took my right hand and kissed it. I nearly jumped. He'll be my friend for the rest of my life. A co-worker told me her mom thinks someone with a hand like mine might be psychic, or have some unusual spiritual link or connection. I liked that. I was comfortable in New Wave and Punk. I read about freaks in history. I identified with monsters, aliens, and animals.

When Iím alone I never think about my right hand but I remember it instantly if someone else is there to see it. In my pocket it is protected from the stares of others. Iíll often carry something, even if it's just a rolled-up section of newspaper, to make my hand look useful. In winter I stuff the fingers of my right glove with tissue to help it look more natural.

In my twenties, while working in a sandwich shop, people sometimes gasped at the sight of my hand. Because I feel awkward about taking hands, shaking hands with new people, I once thought Iíd be more comfortable around people who knew me.

I began to wear loose-fitting shirts that mask the difference in my chest. When I see other men remove their shirts in public I wish I could do the same. I want to be free to feel the sun on my body. Alone one night in a park I dared to take off my shirt. The cool breeze on my skin was thrilling.

When I meet a guy who is interested in me Iíll make sure he notices my hand, but Iím afraid to let a sex partner get a good look at me naked. If he can get past my hand I feel the rest of me shouldn't be too much of a problem. I know that two of the men Iíve fallen in love with were in love with me. How that happened to a guy like me I cannot explain.

When I was younger I found that my good looks had fooled a few guys unintentionally; they felt that because of my right hand I ought to be less appealing, so they would know not to consider me as a potential date.

I remember the kid on the street who would not stop staring at my hand, looking over his shoulder as he walked away. It was a week after ďBatman ReturnsĒ premiered. Was he picturing the Penguin, born with flippers instead of hands?

Iíve been angry, lost, messed-up, and went through a phase when I enjoyed making other people uncomfortable.

I wanted to find others like me. When I returned to college at age thirty I saw a guy in a computer lab with a hand like mine but he gave me an unfriendly look when I said something about it. I introduced myself to another guy with a similar hand, a Frenchman who spoke with me a little. Later when I saw him in a coffeehouse he seemed to think I was a pest.

Through the years counselors have told me they just don't ďseeĒ my hand. This does not help. One insisted that disability doesn't matter, that Iím OK, but to me it does matter. Did they believe I was being unfair to myself somehow, or even that I was misrepresenting myself? Did I make them uncomfortable by claiming my hand as part of my identity?

I wrote an academic paper in my senior year about physical disfigurement.

The most ignorant question Iíve heard came from a lover for one night who, when he saw the scars in my crotch, asked if Iíd had a sex-change operation.

In the world of work (where Iíll never be eligible for most administrative jobs because I canít type more than forty words-per-minute) Iíve learned that itís my responsibility to make others feel at ease around me and my hand.

In New Mexico a lesbian couple, psychics and Tarot readers, told me that in my astral body my right hand is a different color. I like that.

If a redneck gives me a fag-baiting stare, I let him see my right hand. This has a diffusing effect. If panhandlers pester me too often I hold out my empty hands. Usually they leave me alone.

While visiting Toronto, a handsome new friend I became crazy about took hold of my hand and in a brotherly way told me I would be OK. This never happened where I live; gay men in Toronto seem more open to difference.

I admired the gay cowboys in the St. Patrick's Day parade, proud and handsome on their horses. Later, at Gay Pride, I was surprised at the sight of the cowboy booth. As a former farmboy, they made me proud; I felt we might have a few things in common. Their eyes went directly to my hand, though. I imagined they saw I could never measure up to the cowboy life. Once again I knew I could not belong and moved on. My best friend, who wasnít there, tells me Iím mistaken about this, but the feeling has stayed with me.

Is my mother in denial about my hand, because for her it means too much guilt? Back home Iím told that mentioning it means I feel sorry for myself. Others have it much worse, Iím told. I have no right to mourn, is the message.

At my 15th high school reunion a few classmates who had not seen me since graduation assumed that I live with my mother, that I need to be taken care ofóalthough others had told them that I live in Minneapolis.

I discovered biking on city trails and I love it. One morning with not many people around I dared to take off my shirt. I thought the difference wouldnít be obvious if I leaned over the handlebars but I could tell that the bikers who passed me noticed something different. I kept my shirt off anyhow and had a good time. Later I would proudly tell my best friend what Iíd done.

While looking at myself naked in a mirror I see what is missing, what is not symmetrical. I mourn still for what is lost. I want it back.

What if I had been born whole? Would I be more outgoing, less angry? I might be more stable emotionally, but I might be less imaginative as well. I know that my different body makes me nervous and often too quiet, but I also know that caution and introspection can be positive attributes. Although my uniqueness is something I value (things I try in life seem more daring), it has also led to loneliness. I canít say that I prefer my asymmetrical body to the perfect body I might have had, but I have learned to enjoy my own company, my one-of-a-kind self.

© 2006 Jake Brand Heldberg
Illustration: Marble statue of Aghias, Archaeological Museum of Delphi

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Jake Brand Heldberg has a B.A. in English, is employed in an art school, and believes that writing and making art are acts of magic.

 

 

BENT: A Journal of CripGay Voices/July 2006