5.24.2016

May Is Ehlers-Danlos Syndrome Awareness Month

art by Lora Mathis


May Is Ehlers-Danlos Syndrome Awareness Month.

No other disease in the history of medicine has been neglected in such a way.
--Dr. Rodney Grahame

I cannot think of a single illness that needs more awareness than EDS. It is not taught in medical school; most doctors have never heard of it. 

EDS is a genetic disorder that causes defective connective tissue. I was born with it, and started showing what would later be recognized as symptoms very young. 

I was not diagnosed until just before my 30th birthday.

In the intervening time, I was blamed for my illness. I was told by an allergist that I was making it up, that I was "doing it for attention". I was told by an emergency room doctor that "women just have pain sometimes." I was told by a neurologist that I was "performing illness" to cope with some suppressed childhood trauma. I was told that what I was experiencing was not real. 

My experience is not uncommon. The average time to diagnosis for people with EDS is ten years. Most of those people are women.

For you and your loved ones--because you likely know somebody who has EDS and does not yet know--just learn the basics.

I've written a little about the experience of living with EDS and its comorbidities in Pacific Standard, Luna Luna, and Quail Bell magazines.

This website is for my writing. But at times, my illness makes it difficult and even impossible to write, and I wanted you to know why.

5.19.2016

Unrequited


Some more welcome news: two of my space poems will appear in the book Unrequited: An Anthology of Love Poems About Inanimate Objects. It's a terrific collection, and I'm really happy to be a part of it.

I'll be reading both poems at the book launch party on Friday, June 17 at 7 p.m. at Upshur Street Books in D.C. Come say hi, eat some snacks, and hear some poems. Maybe buy a book. If that's not a good way to spend a Friday night, I don't know what is.

More details are here.

5.01.2016

Time-Lapse


Time-Lapse
A rose
A bow
A star

A hand
A fist
A jaw

In pink
In red
In blue-violet, mauve

4.27.2016

New Essay in Luna Luna


I wrote about chronic illness, love, and The Fountain in Luna Luna magazine this week.

You can read the essay here: To the Man Who Would Save Me from My Own Life

4.04.2016

Astrape Undone




Astrape Undone
From a cold bath I walk into the storm,
Waiting for electric winds to blow 
my hair dry.
A dark dress whips around my thighs.
Branches rush from my arms.

Yes, I am powerful these days.
And alone. And lost.

Sparks flash in the corner
Of my eye. Men are hungry
before they look, burned
after.

One streetlamp extinguishes itself. Another explodes.
My stained lips twist like roots. 

The air and moon are with me now,
Empty-handed, a futile crowd:
Grandmother night herself 
Is no match for this grief.



photo by Peter Patau

more on Astrape here

3.25.2016

Darwin's Finches



“In regard to the wildness of birds towards man, there is no other way of accounting for it… many individuals… have been pursued and injured by man, but yet have not learned a salutary dread of him.” 
Charles Darwin, The Voyage of the Beagle



Darwin's Finches
All right, fine, the first few finches
Couldn't have seen it coming.
They caught only dark shapes: 
Large, branch-winged birds lumbering,
Tipped with tufts of down.
Of course they were curious.
Of course they trusted the dark shapes
Were benevolent.

And you’re right: once
Those first birds had been grabbed,
Necks twisted, no,
They could not go back
To warn the others.

But the finches
Just kept coming, bird by trusting bird,
And the men kept killing them,
And the flock kept thinning.

You might think at some point
One bird might say to another,
You know, there’s something strange
About that beach—
Birds who go
Do not come back

And maybe
One bird did say this,
And maybe
The warned bird went anyway.

I guess I understand.





photo by flickr user vtluvbug79

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