Fear Nothing (3 page)

Removing my glasses at last and tucking them in my shirt pocket, I hurried along the wide corridor, past rooms where patients with all manner of maladies, in all stages of illness, either lay insensate or sat before bed trays that held their dinners. Those who saw the corridor lights go off were aware of the reason, and they paused in their eating to stare at me as I passed their open doors.

In Moonlight Bay, I am a reluctant celebrity. Of the twelve thousand full-time residents and the nearly three thousand students at Ashdon College, a private liberal-arts institution that sits on the highest land in town, I am perhaps the only one whose name is known to all. Because of my nocturnal life, however, not every one of my fellow townspeople has seen me.

As I moved along the hall, most of the nurses and nurses’ aides spoke my name or reached out to touch me.

I think they felt close to me not because there was anything especially winning about my personality, not because they loved my father—as, indeed, everyone who knew him loved him—but because they were devoted healers and because I was the ultimate object of their heartfelt desire to nurture and make well. I have been in need of healing all my life, but I am beyond their—or anyone’s—power to cure.

My father was in a semiprivate room. At the moment no patient occupied the second bed.

I hesitated on the threshold. Then with a deep breath that did not fortify me, I went inside, closing the door behind me.

The slats of the venetian blinds were tightly shut. At the periphery of each blind, the glossy white window casings glowed orange with the distilled sunlight of the day’s last half hour.

On the bed nearest the entrance, my father was a shadowy shape. I heard his shallow breathing. When I spoke, he didn’t answer.

He was monitored solely by an electrocardiograph. In order not to disturb him, the audio signal had been silenced; his heartbeat was traced only by a spiking green line of light on a cathode-ray tube.

His pulse was rapid and weak. As I watched, it went through a brief period of arrhythmia, alarming me, before stabilizing again.

In the lower of the two drawers in his nightstand were a butane lighter and a pair of three-inch-diameter bayberry candles in glass cups. The medical staff pretended to be unaware of the presence of these items.

I put the candles on the nightstand.

Because of my limitations, I am granted this dispensation from hospital rules. Otherwise, I would have to sit in utter darkness.

In violation of fire laws, I thumbed the lighter and touched the flame to one wick. Then to the other.

Perhaps my strange celebrity wins me license also. You cannot overestimate the power of celebrity in modern America.

In the flutter of soothing light, my father’s face resolved out of the darkness. His eyes were closed. He was breathing through his open mouth.

At his direction, no heroic efforts were being taken to sustain his life. His breathing was not even assisted by an inhalator.

I took off my jacket and the Mystery Train cap, putting them on a chair provided for visitors.

Standing at his bed, on the side more distant from the candles, I took one of his hands in one of mine. His skin was cool, as thin as parchment. Bony hands. His fingernails were yellow, cracked, as they had never been before.

His name was Steven Snow, and he was a great man. He had never won a war, never made a law, never composed a symphony, never written a famous novel as in his youth he had hoped to do, but he was greater than any general, politician, composer, or prize-winning novelist who had ever lived.

He was great because he was kind. He was great because he was humble, gentle, full of laughter. He had been married to my mother for thirty years, and during that long span of temptation, he had remained faithful to her. His love for her had been so luminous that our house, by necessity dimly lighted in most rooms, was bright in all the ways that mattered. A professor of literature at Ashdon—where Mom had been a professor in the science department—Dad was so beloved by his students that many remained in touch with him decades after leaving his classroom.

Although my affliction had severely circumscribed his life virtually from the day that I was born, when he himself was twenty-eight, he had never once made me feel that he regretted fathering me or that I was anything less than an unmitigated joy and a source of undiluted pride to him. He lived with dignity and without complaint, and he never failed to celebrate what was
right
with the world.

Once he had been robust and handsome. Now his body was shrunken and his face was haggard, gray. He looked much older than his fifty-six years. The cancer had spread from his liver to his lymphatic system, then to other organs, until he was riddled with it. In the struggle to survive, he had lost much of his thick white hair.

On the cardiac monitor, the green line began to spike and trough erratically. I watched it with dread.

Dad’s hand closed weakly on mine.

When I looked at him again, his sapphire-blue eyes were open and focused on me, as riveting as ever.

“Water?” I asked, because he was always thirsty lately, parched.

“No, I’m all right,” he replied, although he sounded dry. His voice was barely louder than a whisper.

I could think of nothing to say.

All my life, our house was filled with conversation. My dad and mom and I talked about novels, old movies, the follies of politicians, poetry, music, history, science, religion, art, and about owls and deer mice and raccoons and bats and fiddler crabs and other creatures that shared the night with me. Our discourse ranged from serious colloquies about the human condition to frothy gossip about neighbors. In the Snow family, no program of physical exercise, regardless of how strenuous, was considered to be adequate if it didn’t include a daily workout of the tongue.

Yet now, when I most desperately needed to open my heart to my father, I was speechless.

He smiled as if he understood my plight and appreciated the irony of it.

Then his smile faded. His drawn and sallow face grew even more gaunt. He was worn so thin, in fact, that when a draft guttered the candle flames, his face appeared to be hardly more substantial than a reflection floating on the surface of a pond.

As the flickery light stabilized, I thought that Dad seemed to be in agony, but when he spoke, his voice revealed sorrow and regret rather than pain: “I’m sorry, Chris. So damn sorry.”

“You’ve nothing to be sorry about,” I assured him, wondering if he was lucid or speaking through a haze of fever and drugs.

“Sorry about the inheritance, son.”

“I’ll be okay. I can take care of myself.”

“Not money. There’ll be enough of that,” he said, his whispery voice fading 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 impossible for me to choose depression, despair, and a reclusive existence.

My mother died suddenly. Although I know that she understood the profound depth of my feeling for her, I wish that I had been able to express it to her adequately on that last day of her life.

Sometimes, out in the night, on the dark beach, when the sky is clear and the vault of stars makes me feel simultaneously mortal and invincible, when the wind is still and even the sea is hushed as it breaks upon the shore, I tell my mother what she meant to me. But I don’t know that she hears.

Now my father—still with me, if only tenuously—did not hear me when I said, “You gave me life.” And I was afraid that he would take his leave before I could tell him all the things that I’d been given no last chance to tell my mother.

His hand remained cool and limp. I held it anyway, as if to anchor him to this world until I could say good-bye properly.

At the edges of the venetian blinds, the window frames and casings smoldered from orange to fiery red as the sun met the sea.

There is only one circumstance under which I will ever view a sunset directly. If I should develop cancer of the eyes, then before I succumb to it or go blind, I will one late afternoon go down to the sea and stand facing those distant Asian empires where I will never walk. On the brink of dusk, I’ll remove my sunglasses and watch the dying of the light.