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 through
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