Every family has stories they tell again and again. These stories change each time in the telling, depending on who is telling them, what they happen to remember, the details they select, and what they want you to believe.
In late 2014 I attended a meeting at the Eunice Kennedy Shriver National Institute of Child Health and Human Development. I was there to take notes, and was dutifully transcribing the speaker's comments on various programs the Institute had funded. My mind had just begun to wander when I heard her say, "...and robotic cars for babies."
That got my attention. I wrote down everything she said and looked it up as soon as I got home. The robotic cars in question were products of the pediatric physical therapy lab at the University of Delaware. In the time since receiving their grant, I learned, researchers in the lab had gone beyond robotic baby cars. They'd started a movement.
Just under two years later, I'm very happy to share my story on the GoBabyGo! program, which was published this week on the Popular Mechanics website:
The poet last summer at Earl Mosley's Hearts of Men dance program
My siblings are the greatest. They're smart, funny, and kind, and they're constantly making me proud. I wanted to share a poem from my brother Michael, a fellow crafter, baker, and dancer who will be starting high school in the fall.
At a time when his peers are doing all they can to conform, Michael has remained a beacon of individuality and courage. Here he is talking about his experience with a life-changing summer dance program for men.
And here's a poem he wrote toward the end of the school year:
by Michael Horowitz
Style is in the eye of the beholder?
All I get is the cold shoulder
You call my shoes insane
Maybe yours are too plain
You call the way I talk abnormal
Maybe you talk way too formal
Because of you I’m afraid to be who I am
Making me think my looks are a scam
What defines me, what defines you?
Is it being false over true?
Looks are deceiving
And personalities can be misleading
All of your insecurities, are just like your impurities
Trying to cover up who you are, instead of shining like a star
So next time don’t follow the crowd
Try to be a little out loud
Because you have nothing to lose because you choose, how
In December I learned about attachment theory, and it blew my mind. (Not familiar with attachment theory? Do yourself a favor and read the book. It's less cheesy and more evidence-based than it looks.)
In March, I went to see Zootopia.
I came home with visions of oil and water dancing behind my eyes. Judy Hopps and Nick Wilde are individuals, yes, and talking animals at that, but they are also textbook examples of anxious and avoidant attachment styles.
I thought about patterns, and the way we consider some dysfunctional behaviors strong or noble while others are viewed as weaknesses. I thought about grasping rabbits and flight-risk foxes I have known. I wrote a poem.
The Destination by Jane Hirshfield
I wanted something, I wanted. I could not have it.
Irremediable rock of refusal, this world thick with bird song,
tender with starfish and apples.
How calming to say, "Turn right at the second corner,"
and be understood,
and see things arrive as they should at their own destination.
Yet we speak in riddles—
"Turn back at the silence." "Pass me the mountain."
To the end we each nod, pretending to understand.
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.
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.