[Julie Steiner]

Marfan Syndrome Blues

“With careful management,” the pamphlet cheers,
“most Marfanoids now live past forty years.”
I’m forty-five. Just lucky, it appears.

One blissful hour ago, I had no clue
my death was half a decade overdue.
And now I know I’ve cursed my children, too.

A verse of Larkin’s writhes within my head,
throwing sparks, the way my wayward thread
of DNA will zap my daughters dead.

Lightning-strikes of stretch-marks brand them mine.
They’ve both received my thunderbolt of spine
(a back-and-forth-and-sideways serpentine),

the jaw I can dislocate like a snake,
and limbs so hyper-flexible, they make
the double-jointed do a double take.

I gave my girls my maloccluded grin;
my skeletal demeanor, long and thin;
arachnodactyly; transparent skin;

and now, I’ve learned, perhaps a fatal flaw
in the aorta. Even with my jaw
unhinged, the news is sticking in my craw.

Why has no one spotted this before?
Among the three of us, we’ve seen a score
of specialists. Today’s was just one more,

who’s broken what our camelbacks entail,
and said the woes we’d thought were weasel-scale
amount to something very like a whale.

~~~~~

When I throw a self-pity party, I do a thorough job, don't I?

Turns out we don't have Marfan Syndrome. It's Ehlers-Danlos Syndrome. Hooray for easily-disjointed limbs and for chronic, debilitating pain, rather than our aortas ripping at an inopportune moment and killing us within about four minutes. But I didn't know that when I wrote this seven years ago, shortly after my elder daughter's heart transplant (for a different set of genetic defects), when I finally had time to focus on my younger daughter's somewhat less catastrophic medical weirdnesses, some of which I seem to have given to both of them.

The poem alludes to Philip Larkin’s “This Be the Verse” (which begins, “They fuck you up, your mom and dad. / They do not mean to, but they do.”), and also to this passage of William Shakespeare’s Hamlet:

HAMLET: Do you see yonder cloud that’s almost in shape of a camel?
POLONIUS: By the mass, and ’tis like a camel.
HAMLET: Methinks it is like a weasel.
POLONIUS: It is backed like a weasel.
HAMLET: Or like a whale?
POLONIUS: Very like a whale.