“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.
I’ll have to squint. Bright light pains my eyes. Its effect is so total and swift that I can virtually feel the developing burn.
As the blood-red light at the periphery of the blinds deepened to purple, my father’s hand tightened on mine.
I looked down, saw that his eyes were open, and tried to tell him all that was in my heart.
“I know,” he whispered.
When I was unable to stop saying what didn’t need to be said, Dad found an unexpected reserve of strength and squeezed my hand so hard that I halted in my speech.
Into my shaky silence, he said, “Remember…”
I could barely hear him. I leaned over the bed railing to put my left ear close to his lips.
Faintly, yet projecting a resolve that resonated with anger and defiance, he gave me his final words of guidance: “Fear nothing, Chris. Fear nothing.”
Then he was gone. The luminous tracery of the electrocardiogram skipped, skipped again, and went flatline.
The only moving lights were the candle flames, dancing on the black wicks.
I could not immediately let go of his slack hand. I kissed his forehead, his rough cheek.
No light any longer leaked past the edges of the blinds. The world had rotated into the darkness that welcomed me.
The door opened. Again, they had extinguished the nearest banks of fluorescent panels, and the only light in the corridor came from other rooms along its length.
Nearly as tall as the doorway, Dr. Cleveland entered the room and came gravely to the foot of the bed.
With sandpiper-quick steps, Angela Ferryman followed him, one sharp-knuckled fist held to her breast. Her shoulders were hunched, her posture defensive, as if her patient’s death were a physical blow.
The EKG machine beside the bed was equipped with a telemetry device that sent Dad’s heartbeat to a monitor at the nurses’ station down the hall. They had known the moment that he slipped away.
They didn’t come with syringes full of epinephrine or with a portable defibrillator to shock his heart back into action. As Dad had wanted, there would be no heroic measures.
Dr. Cleveland’s features were not designed for solemn occasions. He resembled a beardless Santa Claus with merry eyes and plump rosy cheeks. He strove for a dour expression of grief and sympathy, but he managed only to look puzzled.
His feelings were evident, however, in his soft voice. “Are you okay, Chris?”
“Hanging in there,” I said.
4
From the hospital room, I telephoned Sandy Kirk at Kirk’s Funeral Home, with whom my father himself had made arrangements weeks ago. In accordance with Dad’s wishes, he was to be cremated.
Two orderlies, young men with chopped hair and feeble mustaches, arrived to move the body to a cold-holding room in the basement.
They asked if I wanted to wait down there with it until the mortician’s van arrived. I said that I didn’t.
This was not my father, only his body. My father had gone elsewhere.
I opted not to pull the sheet back for one last look at Dad’s sallow face. This wasn’t how I wanted to remember him.
The orderlies moved the body onto a gurney. They seemed awkward in the conduct of their business, at which they ought to have been practiced, and they glanced at me surreptitiously while they worked, as if they felt inexplicably guilty about what they were doing.
Maybe those who transport the dead never become entirely easy with their work. How reassuring it would be to believe as much, for such awkwardness might mean that people are not as indifferent to the fate of others as they sometimes seem to be.
More likely, these two were merely curious, sneaking glances at me. I am, after all, the only citizen of Moonlight Bay to have been featured in a major article in Time magazine.
And I am the one who lives by night and shrinks from the sight of the sun. Vampire! Ghoul! Filthy wacko pervert! Hide your children!
To be fair, the vast majority of people are understanding and kind. A poisonous minority, however, are rumormongers who believe anything about me that they hear—and who embellish all gossip with the self-righteousness of spectators at a Salem witch trial.
If these two young men were of the latter type, they must have been disappointed to see that I looked remarkably normal. No grave-pale face. No blood-red eyes. No fangs. I wasn’t even having a snack of spiders and worms. How boring of me.
The wheels on the gurney creaked as the orderlies departed with the body. Even after the door swung shut, I could hear the receding squeak-squeak-squeak.
Alone in the room, by candlelight, I took Dad’s overnight bag from the narrow closet. It held only the clothes that he had been wearing when he’d checked into the hospital for the last time.
The top nightstand drawer contained his watch, his wallet, and four paperback books. I put them in the suitcase.
I pocketed the butane lighter but left the candles behind. I never wanted to smell bayberry again. The scent now had intolerable associations for me.
Because I gathered up Dad’s few belongings with such efficiency, I felt that I was admirably in control of myself.
In fact, the loss of him had left me numb. Snuffing the candles by pinching the flames between thumb and forefinger, I didn’t feel the heat or smell the charred wicks.
When I stepped into the corridor with the suitcase, a nurse switched off the overhead fluorescents once more. I walked directly to the stairs that I had climbed earlier.
Elevators were of no use to me because their ceiling lights couldn’t be turned off independently of their lift mechanisms. During the brief ride down from the third floor, my sunscreen lotion would be sufficient protection; however, I wasn’t prepared to risk getting stuck between floors for an extended period.
Without remembering to put on my sunglasses, I quickly descended the dimly lighted concrete stairs—and to my surprise, I didn’t stop at the ground floor. Driven by a compulsion that I didn’t immediately understand, moving faster than before, the suitcase thumping against my leg, I continued to the basement, where they had taken my father.
The numbness in my heart became a chill. Spiraling outward from that icy throb, a series of shudders worked through me.
Abruptly I was overcome by the conviction that I’d relinquished my father’s body without fulfilling some solemn duty, although I was not able to think what it was that I ought to have done.
My heart was pounding so hard that I could hear it—like the drumbeat of an approaching funeral cortege but in double time. My throat swelled half shut, and I could swallow my suddenly sour saliva only with effort.
At the bottom of the stairwell was a steel fire door under a red emergency-exit sign. In some confusion, I halted and hesitated with one hand on the push bar.
Then I remembered the obligation that I had almost failed to meet. Ever the romantic, Dad had wanted to be cremated with his favorite photograph of my mother, and he had charged me with making sure that it was sent with him to the mortuary.
The photo was in his wallet. The wallet was in the suitcase that I carried.
Impulsively I pushed open the door and stepped into a basement hallway. The concrete walls were painted glossy white. From silvery parabolic diffusers overhead, torrents of fluorescent light splashed the corridor.
I should have reeled backward across the threshold or, at least, searched for the light switch. Instead, I hurried recklessly forward, letting the heavy door sigh shut behind me, keeping my head down, counting on the sunscreen and my cap visor to protect my face.
I jammed my left hand into a jacket pocket. My right hand was clenched around the handle of the suitcase, exposed.
The amount of light bombarding me during a race along a hundred-foot corridor would not be sufficient, in itself, to trigger a raging skin cancer or tumors of the eyes. I was acutely aware, however, that the damage sustained by the DNA in my skin cells was cumulative because my body could not repair it. A measured minute of exposure each day for two months would have the same catastrophic effect as a one-hour burn sustained in a suicidal session of sun worship.
My parents had impressed upon me, from a young age, that the consequences of a single irresponsible act might appear negligible or even nonexistent but that inevitable horrors would ensue from habitual irresponsibility.
Even with my head tucked down and my cap visor blocking a direct view of the egg-crate fluorescent panels, I had to squint against the glare that ricocheted off the white walls. I should have put on my sunglasses, but I was only seconds from the end of the hallway.
The gray-and-red-marbled vinyl flooring looked like day-old raw meat. A mild dizziness overcame me, inspired by the vileness of the pattern in the tile and by the fearsome glare.
I passed storage and machinery rooms.
The basement appeared to be deserted.
The door at the farther end of the corridor became the door at the nearer end. I stepped into a small subterranean garage.
This was not the public parking lot, which lay above ground. Nearby were only a panel truck with the hospital name on the side and a paramedics’ van.