This is determinism, predestination and fate on a scale of which Calvin never dreamed. …The age at which the madness will appear depends strictly and implacably on the number of CAG [Cytosine-Adenine-Guanine] repetitions…in one place in one gene. If you have thirty-nine, you have a ninety percent probability of dementia by the age of seventy-five and will on average get the first symptoms at sixty-six; if forty, on average you will succumb at fifty-nine; if forty-one, at fifty-four; if forty-two, at thirty-seven; and so on until those who have fifty repetitions of the 'word' will lose their minds at roughly twenty-seven years of age. …No prophet in the Old Testament…ever pretended to tell people exactly when their lives would fall apart, let alone got it right.
—Matt Ridley, Genome: The Autobiography of a Species in 23 Chapters
The symptoms of HD are sometimes described as having ALS, Parkinson's and Alzheimer's – simultaneously.
—The Huntington's Disease Society of America
Miguel, Meet Charlotte
If a physician of high standing, and one's own husband…
—Charlotte Perkins Gilman, "The Yellow Wallpaper"
Let's say Don Quixote is less
about chivalric romance
than physical and
psychological disability.
Let's say windmills are less
giants in need of vanquishing
than ordinary people
at odds with themselves.
Their limbs, like amateur magicians,
chase rabbits in the air.
Let's say the hero
went to med school—
his idealism, in the end,
little more than fatalistic pity,
an advent calendar of despair
(every symptom, a window;
every twitch, a tell).
Poorly paid nursing assistant,
Sancho Panza mutters,
"Why can't we help
these people to live?"
Here comes the bride,
the gale, and talk
of institutions…
Your sister has full-blown
Huntington's, and you may, too.
As your husband,
I promise you this:
I will never put yellow
wallpaper in the bedroom
and you may creep
(or turn) wherever you wish.
Gothic misogyny be damned.
How telling that for doctors affection
once meant "an abnormal
condition of body or mind."
Forest
A woman who cuts her hair is about to change her life.
—Coco Chanel
You've never had your hair this long before.
Nine months into the pandemic,
and you're Rapunzel,
stuck in a double helix of uncertainty.
I'd say you were singing, but you don't sing;
I'd say I was coming to get you,
but the helix, the tower,
has no stairs, spiral or otherwise.
DNA: a thoroughly modern sorceress.
Though you approve of how
I cut our son's hair and though
I wield only professional equipment,
you won't let me near you.
An inch! Just an inch off the back!
No bangs, no feathering,
no Dorothy Hamill wedge-cut, I promise.
In the fairy tale, Rapunzel's
blossoming stomach betrays the prince.
The sorceress hacks off all her hair,
which the lovers used as a ladder,
and then banishes her.
The prince leaps from the tower
into a thorn bush and blinds himself.
(Fairy tales and disability!)
So, it's the wicked crone's buzz-cut
or my little trim; you decide.
Years ago—let's not say how many—I declared
rather stiltedly, "I care for you."
Please help me to get ready.
We've spent so much time creating a life
for our son that we've forgotten each other.
No matter what happens, I will
find you in the forest.
Lucky
A friend called me "lucky,"
and I wanted to punch him in the face.
He could find the bright side
of an Argentinian moon
"disappeared" during an eclipse.
Pollyanna is a downer compared to him.
"Think if you had had your own
"children," he said.
"And think if you were missing
some teeth."
In my mind, I pictured throwing the upright
piano of his smile off a cliff.
The keys as they tumbled—
what music they could make!
Note to the world: when you try to cheer
someone up, it's not about you
or your sloppy ideas.
My wife and I chose to make a family
in a different way.
Who needs the hydroelectric plant
of intercourse when the river
in town will send you
a little Moses?
It's called the Department of Children and Families—
the Pharaoh couldn't be more merciless.
Our son delivered us no doubt,
but not from blood.
My friend's reasoning applies to autism, too.
Eugenics is like the stamen in a flower:
it promises.
Tax Cut
Diaper backward spells repaid.
—Marshall McLuhan
You'd look good in diapers. I did.
After I had that hole in my
colon, I bled for a week.
It was as if I were grading the floor
or bed sheets. Everything had
red ink on it. If doctors
were undergraduates, we'd have
to turn that mighty river
of correction green.
Red makes students feel bad;
red makes them faint,
as it did me during
our pre-marital exam. Two rather
large city officials had to hold
me down to slip
the needle in. "You do want to get
married, don't you?" one of
them said… So, you
went and bought some Depends.
Except there weren't any
for men. At first, I was
pissed. Those little flowers—
so purple, so yellow—
taunted me. And
the crotch, well, I felt like Joseph
being told, "No room at
the inn." There was
plenty at the out. I needed hips
to keep the damn things up.
I needed hips the way
a bird needs wings. "It's spring
on your bottom," you joked,
and it was, and I went
with it. (Binaries shouldn't ever
be bricks, as mortar will
beg for its homonym.
Nothing says "Incoming!" the way
a diaper does.) The rhetoric
of pee and poo—it's
like a tax cut on shame. You
get to keep more of your
hard-earned loathing
for yourself. Huntington's caregivers
want us to understand how
difficult their lives
are, how smelly, how stained.
Listen up: you can wipe
someone's ass
without leaving them behind.
While I lay bleeding, men
worked, I remember,
to replace our roof. A storm had
come through town. Above,
I heard footsteps and
the loud pop-pop of the nail guns.
We could always go out like
Butch Cassidy and
the Sundance Kid. Remember
them? Bandits, Bolivia,
a hail of urine…
Punch
Freud said there were only two kinds
of railway passengers:
those who thought the train would crash
at every moment
and those who enjoyed the scenery.
The former traded
never being surprised for constant
vigilance, a rose's aroma
for its patented prick. Beware is a birthday.
Beware is a bud.
With Huntington's we've been asked
to enjoy the scenery
while the train is crashing.
"No," you say,
"the train is crashing for everyone.
There's absolutely
no need to worry. Read your book.
Have a sandwich.
Maybe we'll be delayed. Just don't let
the conductor,
who plays an MD in real life, take
your soul.
He'll do everything he can
to punch it."
