Fear Nothing

further. His words slipped from his pale lips almost as silently as the liquid of an egg from a cracked shell. “The other inheritance… from your mother and me. The XP.”
        “Dad, no. You couldn't have known.”
        His eyes closed again. Words as thin and transparent as raw egg white: “I'm so sorry…”
        “You gave me life ,” I said.
        His hand had gone limp in mine.
        For an instant I thought that he was dead. My heart fell stone through-water in my chest.
        But the beat traced in green light by the electrocardiograph showed that he had merely lost consciousness again.
        “Dad, you gave me life,” I repeated, distraught that he couldn't hear me.
        

    * * *
        
        My dad and mom had each unknowingly carried a recessive gene that appears in only one in two hundred thousand people. The odds against two such people meeting, falling in love, and having children are millions to one. Even then, both must pass the gene to their offspring for calamity to strike, and there is only one chance in four that they will do so.
        With me, my folks hit the jackpot. I have xeroderma pigmentosum - XP for short - a rare and frequently fatal genetic disorder.
        XP victims are acutely vulnerable to cancers of the skin and eyes. Even brief exposure to sun-indeed, to any ultraviolet rays, including those from incandescent and fluorescent lights-could be disastrous for me.
        All human beings incur sunlight damage to the DNA - the genetic material - in their cells, inviting melanoma and other malignancies. Healthy people possess a natural repair system: enzymes that strip out the damaged segments of the nucleotide strands and replace them with undamaged DNA.
        In those with XP, however, the enzymes don't function; the repair is not made. Ultraviolet-induced cancers develop easily, quickly-and metastasize unchecked.
        The United States, with a population exceeding two hundred and seventy million, is home to more than eighty thousand dwarfs. Ninety thousand of our countrymen stand over seven feet tall. Our nation boasts four million millionaires, and ten thousand more will achieve that happy status during the current year. In any twelve months, perhaps a thousand of our citizens will be struck by lightning.
        Fewer than a thousand Americans have XP, and fewer than a hundred are born with it each year.
        The number is small in part because the affliction is so rare. The size of this XP population is also limited by the fact that many of us do not live long.
        Most physicians familiar with xeroderma pigmentosum would have expected me to die in childhood. Few would have bet that I could survive adolescence. None would have risked serious money on the proposition that I would still be thriving at twenty-eight.
        A handful of XPers (my word for us) are older than I am, a few significantly older, though most if not all of them have suffered progressive neurological problems associated with their disorder. Tremors of the head or the hands. Hearing loss. Slurred speech. Even mental impairment.
        Except for my need to guard against the light, I am as normal and whole as anyone. I am not an albino. My eyes have color. My skin is pigmented. Although certainly I am far paler than a California beach boy, I'm not ghost-white. In the candlelit rooms and the night world that I inhabit, I can even appear, curiously, to have a dusky complexion.
        Every day that I remain in my current condition is a precious gift, and I believe that I use my time as well and as fully as it can be used. I relish life. I find delight where anyone would expect it-but also where few would think to look.
        In 23 B.C., the poet Horace said, “Seize the day, put no trust in the morrow!”
        I seize the night and ride it as though it were a great black stallion.
        Most of my friends say that I am the happiest person they know. Happiness was mine to choose or reject, and I embraced it.
        Without my particular parents, however, I might not have been granted this choice. My mother and father radically altered their lives to shield me aggressively from damaging light, and until I was old enough to understand my predicament, they were required to be relentlessly, exhaustingly vigilant. Their selfless diligence contributed incalculably to my survival. Furthermore, they gave me the love-and the love of life-that made it