James Clarke 

I was born inside out

For as long as he could remember, James Clarke had struggled with the physical and emotional scars of his childhood condition. Then he met the surgeon who had saved his life ...
  
  

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Photograph: David Levene Photograph: David Levene/Guardian

I was born inside out, with an unformed abdomen and my intestines in the open for all to see. "Inside out" was the retort mum and dad suggested if, and when, kids at school asked what had happened, which they usually did while we got ready for PE lessons in the damp, grimy changing rooms of our south London comprehensive. I used to love swimming, the feeling of being immersed, but sometimes I would imagine slamming into the water, making the greatest belly flop in history, smashing and splitting my stomach open, turning the blue pool red.

I lack that basic sign of being a person: a navel. Instead, I have a clumsy starburst of skin. And where some people talk about having a six-pack, I have an 11-pack, for that is the number of crumpled and contorted parcels of skin on my stomach. There are so many lines it looks as if someone has drawn the map of the London underground on me, just without the colours.

At birth I was "buckled", as my dad always said, by which he meant not quite right and needing to be fixed. As the first weeks and months of my life unfolded my nails fell off, my hair was shaved and the doctors fed me through my head, legs and hands. As well as my torso, my legs are topped and tailed with small, T-shaped scars. Our family albums hold no pictorial record of my first six months of life, spent alone in an incubator at Great Ormond Street, save a single photograph of me in a hospital cot.

I never had any of the experiences that newborn babies commonly have. No hugs, no breastfeeding. My mum and dad could touch my little toe and that was about it. It's something that has left me, 34 years later, with a muted sense of isolation and an occasional panic at the thought that I might be about to be abandoned. Had I entered the world in a less technologically and medically developed country in 1972, I would simply have been dumped in the sluice. I was told that recently by someone I had been waiting to meet for a long time.

Through childhood, at the kitchen table at tea time, getting ready to go swimming, or with mum sitting on the edge of the bath while I sat on the toilet, I would tease more of the story out of my parents as I stitched together a sense of who I was. This account of my beginning soon became my favourite story, and I was always asking to hear it again.

I think I was growing into a sense of myself. My story, the background I didn't recall, intensified and morphed endlessly with detail and anecdote. As the story was repeated and retold, there was always new information and detail: the illness, the surgery, the cardiac arrest, being baptised within hours of being born.

The circumstances of my birth began to exercise a powerful, imaginative force over me. Sometimes I would lie in bed wondering what would happen if my scars weakened and loosened, as though they were really held together by magic string. I would see them unravelling. My brother used to say that as I got older they would go up my body and end up on my face one day. I don't think I ever believed him.

But as I grew up I wasn't especially bothered about going out or belonging to any kind of peer group. In my teens I had friends but I saw little of them outside school. I didn't have girlfriends. I was often alone. Instead, my scar worked like a diagram for my consciousness and imagination. My bedroom became a sanctuary. I would rack up hours indoors, drawing, reading, writing, and wondering why it was that I had survived.

At university, my scar became a secret. Being scarred meant being scared, afraid of how a misunderstanding heart and mind might respond when confronted by my twisted skin. I felt self-conscious and embarrassed. As a child, I enjoyed walking along the edge of the pool with face after face drifting their gaze towards me for a moment. Now, as much as I wanted to, I never went swimming. My story was still on my mind, and, living away from home for the first time, it occurred to me that one of the reasons my parents had routinely revisited and recounted the experience was because they were themselves striving to untangle their own feelings that had underpinned my tortuous beginning. My mother, a nurse, and my father, an electrician, were newly married when I was born, and had feared I wouldn't live. It was, I came to believe, one of the biggest tests of their marriage.

I had always known the name of the surgeon who saved me as a baby. "Miss Kapila" - her name sounded so delicate and poetic - was a mythic presence in my life, a part of the story we were always telling each other, and the one character I had never actually met. Mum and dad would quote her verbatim, as if reciting lines from a film they had been in. I had always wanted to thank her for giving me my life back - and, I think, to make sure that she was real.

Eight years ago, quite by chance, my mother learned through colleagues at her hospital of Miss Kapila's whereabouts. I wrote a letter, and Miss Kapila wrote back. We became correspondents. Christmas cards were exchanged and when I had a book published in 2001, it seemed only right to include her in the dedication. Then on July 5 2004 I came full circle and we finally met. I had just turned 32 and this was the best present I could have hoped for.

I had my first sight of her as I approached the steps of the Royal College of Surgeons in London, where she was working. She stood under a sky tinged pink by the sunset, her lime-green sari billowing in the breeze. Her smile was wide and bright. When we hugged, it was a perfect-world moment. We joined a colleague of hers and went for dinner, and I asked her whether she thought the physical event of my birth would have had an impact on my emotional life. When she said yes, all the guilt I'd had over the years about feeling self-pity fell away. We parted company with a hug, and I felt a quiet elation that she had kept space in her mind for someone who had come and gone in her life. The first thing I did after we parted was to call my parents and tell them about my evening. I had spent my life listening to them telling my story, and now I felt I was bringing it to a close.

My scars have faded over the years, but sometimes I'll catch myself in the mirror and be surprised by how vivid they are. I don't go swimming much now, but that is due only to a lack of time and not self-consciousness. I need not have worried about that: my girlfriend doesn't give my scar a second thought. She says that what matters most is what the scar represents. As for Miss Kapila, we are still exchanging emails. If I ever get married, I'd like to invite her to the wedding.

· Do you have an extraordinary story about your life to tell in First Person? Write to my.story@ theguardian.com

 

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