It’s my nature to believe in miracles. So why not believe in this one?
I climbed on my bike and pedaled after the dog. He was swift and
certain, and to match his pace, I really had to make the drive chain
hum.
In block after block, only a few widely spaced security lamps glowed at
the back of the residential properties that we passed. By habit I
steered away from those radiant pools, along the darker side of the
alleyway, even though I could have sailed through each patch of
lamplight in less than a second or two, without significant risk to my
health.
Xeroderma pigmentosumxp for those who aren’t able to tie their tongues
in knots is an inherited genetic disorder that I share with an exclusive
club of only one thousand other Americans. One of us per 250, 000
citizens. XP renders me highly vulnerable to skin and eye cancers caused
by exposure to any ultraviolet radiation. Sunshine.
Incandescent or fluorescent bulbs. The shining, idiot face of a
television screen.
If I dared to spend just half an hour in summer sun, I would burn
severely, though a single searing wouldn’t kill me. The true horror of
XP, however, is that even minor exposure to ultraviolet radiation
shortens my life, because the effect is cumulative. Years of
imperceptible injuries accumulate until they manifest as visible lesions,
malignancies. Six hundred minutes of exposure, spread one by one over an
entire year, will have the same ultimate effect as ten continuous hours
on a beach in brightest July. The luminosity of a streetlamp is less
dangerous to me than the full ferocity of the sun, but it’s not entirely
safe.
Nothing is.
You, with your properly functioning genes, are able routinely to repair
the injury to your skin and eyes that you unknowingly suffer every day.
Your body, unlike mine, continuously produces enzymes that strip out the
damaged segments of nucleotide strands in your cells, replacing them
with undamaged DNA.
I must exist in shadows, while you live under exquisitely blue skies,
and yet I don’t hate you. I don’t resent you for the freedom that you
take for granted although I do envy you.
I don’t hate you because, after all, you are human, too, and therefore
have limitations of your own. Perhaps you are homely, slow-witted or too
smart for your own good, deaf or mute or blind, by nature given to
despair or to self-hatred, or perhaps you are unusually fearful of Death
himself. We all have burdens. On the other hand, if you are better
looking and smarter than I am, blessed with five sharp senses, even more
optimistic than I am, with plenty of self-esteem, and if you also share
my refusal to be humbled by the Reaper … well, then I could almost
hate you if I didn’t know that, like all of us in this imperfect world,
you also have a haunted heart and a mind troubled by grief, by loss, by
longing.
Rather than rage against XP, I regard it as a blessing. My passage
through life is unique.
For one thing, I have a singular familiarity with the night. I know the
world between dusk and dawn as no one else can know it, for I am a
brother to the owl and the bat and the badger. I am at home in the
darkness. This can be a greater advantage than you might think.
Of course, no number of advantages can compensate for the fact that
death before the age of consent is not uncommon for those with XP.
Survival far into adulthood isn’t a reasonable expectation at least not
without progressive neurological disorders such as tremors of the head
and hands, hearing loss, slurred speech, even mental impairment.
Thus far I have tweaked Death’s cold nose without retribution.
I’ve also been spared all the physical infirmities that my physicians
have long predicted.
I am twenty-eight years old.
To say that I am living on borrowed time would be not merely a cliche
but also an understatement. My entire life has been a heavily mortgaged
enterprise.
But so is yours. Eventual foreclosure awaits all of us. More likely than
not, I’ll receive my notice before you do, though yours, too, is in the