Photophobia
BY KATHLEEN COLE
I was born with a vitamin D deficiency. My father blamed it on my mother. I could see the logic behind this: my mother produced me and I was flawed. It was as if she was a clockmaker who’d made a watch that was perpetually ten minutes behind. My mother blamed my father who insisted I be fed with nutritious formula instead of being breastfed. It was the word “formula” that my mother inherently did not trust: babies were not equations and their problems could not be solved with a formula. My grandmother blamed God. While my mother was pregnant my grandmother blessed her belly with lime water and bay leaves and took extra care in her garden, believing if she could make a plant grow in the ground she could make me grow within my mother. I developed bowed femurs and a curvy posture. My grandmother took it personally.
Of course they tried to fix it. My mother—indignant and eager to prove her innocence in the matter—took me to doctor after doctor. One suggested a diet rich in mushrooms and fish but we were vegetarians and my mother, always sensitive to words, could not bring herself to feed me a fungus. They inquired about my time exposed to sunlight and my mother gave an appropriate answer: I’d never been burned by it but she’d taken me on picnics and to swimming pools, once I’d turned a year old and my skin had thickened.
Eventually someone determined that the only solution was that I must be kept in sunlight as near to constantly as was possible. The doctor who’d first suggested the diet could not accept this as a reasonable course of treatment. Medicine had taught him to place faith in cures, not extreme, inconvenient measures. He tried to extract vitamin D from milk and mushrooms and spoon feed it to me, but to no avail. My mother told him to drop it—she liked the outdoors, anyway. I believe it may have driven him crazy, though the argument could be made that he already was, before me. He eventually tried to capture sunlight in a syringe that he planned on injecting into me—he held a vial out the window of the top floor of the tallest building in the town at high noon and made a vacuuming noise, believing this would summon the sunlight down to him. When he appeared at our house on a sunny day clutching an empty syringe demanding to see me, my mother locked him out and called the police. I did not see him again.
In school I had to sit beside a window and at least hold an arm outside. Most of the time I stayed entirely outside, doing my assignments sitting Indian style on the grass, but teachers were afraid I’d cheat (I wasn’t sure entirely how. Perhaps they imagined I would sneak up to the school in the night and write answers on the bricks). Night and rainy days were problematic. Since there was no solid diagnosis, my new doctors pronounced me solar powered, and applying this analogy thought I could make it through approximately fifteen hours without sunlight, provided I’d had a full nine hours beforehand. After the fifteen hours I powered down like a calculator and slept until I could feel the light again.
There was a boy who used to go to school with me who had solar urticaria. He pronounced this perfectly at seven while missing teeth. He was allergic to sunlight, he told me, looking at my arm dangling out the window. His mother took him out of school after an incident in PE where the gym teacher told him he just didn’t want to go outside, there wasn’t anything wrong with him, and made him run laps with us. His skin burst into brilliant red spots and he stopped running and just watched himself changing.. It reminded me of mushrooms my mother wouldn’t let me eat and I thought he was beautiful.
I wanted to see him again now—see if his skin had turned back to its smooth white or if the red was still there, under the surface, like a bruise. Also I felt overly warmed, overcooked at seventeen, and worried about what I would feel at seventy. Though the doctor had never succeeded in injecting the sun into me I felt it there: a singing, sour yellow in my limbs, turning orange at my joints and finally just a burnt red in my stomach. I also wondered how one who had never known the light could know the darkness, my condition being such that I knew both and suffered in one. My mother, though she tried, could not make the sun shine around the clock for me but his could take it away forever for him with blackout curtains and locked doors.
I found him in his house, a cold white under calming blue sheets. There was a peephole in his bedroom door through which his mother watched me step lightly into the room. I had prepared: spent a solid Sunday in the background, splayed my limbs, used my body like a rain catcher. I was charged and from the way his mother eyed me I felt as if I trailed sparks in my wake.
In his bedroom it was cold. The temperature was level but I felt the small hairs on my arms and neck raising—there was no yellow, no orange, no red in all of the room. The closet door was open and his clothing was organized by color, but missing the beginning of the rainbow. The carpet was a cream color—I suspected so that he could not blend in—and the walls a deep green. He looked at me with wet eyes. He said he had heard what I was. He shrank visibly: pulled the blue sheets tighter around his waist, tensed his muscles, condensed. I felt the same instinct. He was a raw egg, perfect and full, and I was burnt: blackened, overly spicy, stuck. Cooking caused shrinkage, or so I believed. I stepped towards him, asked how long it had been since he’d been outside. He said he did not know, he did not care. And what about rainy days, cloud coverage, the night? He didn’t care. Why use what he didn’t need?
Then I touched him. I reached out my hand, spindly and dark, and circled it around his wrist. There were no sparks; we did not combust. Outside the door I could hear a faint shriek—his mother—but no one entered. I took hold of his other wrist. I was frozen, not from adrenaline but from the sheer cold of him: his limbs were icy, my blood suddenly felt cold, thin like water, racing up towards my heart. I could feel the progression and before it quite reached the center of me I let go. I said it had been nice to meet him. I said I would come again.
