Lake Therapy

Last week, my iMac crashed. I took it to the Apple Store, to the young people in blue tee shirts designated “geniuses” who are charged with helping the technologically dismayed and uncertain. My genius informed me that my hard drive was too old and could not be resuscitated. A new hard drive was installed and I spent yesterday transferring data to my blank, but apparently fresh and capable new hard drive. A process that entailed several hours on the phone saying “what? what?” to various disembodied voices.  My hearing is not what it used to be.  Nor are phone connections. The more complex the system, the more liable some part of it is to fray, sputter, misalign, conk out.  Computers are like rigid brains, prone to strokes.  I tell myself that I should go back to a legal pad, and leave behind this all-too-fallible, profit-driven, bound-to-crash machine.  But even if I wrote everything out longhand, I’d have to type it into a computer to get anyone to read it. 

After much effort, I have recovered a great deal, although everything from the past six months is gone, and I find myself in a time warp.  Instead of the proposal I was working on, smack in the middle of my desktop appear words that I wrote about Felix two years ago, when we were deep in the misery the electrical mayhem in his brain can cause him:

We strap on his mitts, so his fisted hands will not bloody his still soft skin.  His face is not yet whiskered, on the cusp, beautiful, even with his self-slapped eyes, his nose as swollen as a boxer’s, his ears scabbed and rusty.  The mitts just came, not the oven mitts fastened with clothesline we’d been using, but medically approved, thirty five dollar, double security Posey mitts used at the finest hospitals for patients who yank at the tubes and IVs, determined to get off their beds and walk, crawl, roll away from the infernal blinking and beeping and record keeping.  Mitts that are allowed on the school bus, that pass muster with the Child Service agents with their thin lips and badges and impossible jobs.

I met a boy who was once like Felix, who moved through the world with no words, no language, who bashed his own head until it bruised and bled. At seven he learned to speak.  Now he no longer hits himself, only says, I want to die.  

Words that bring me back to the time when Jason and I realized that love was not enough, that helping Felix required more energy, more people, more space, more opportunity for renewal than we could muster. 

Right after my computer crashed, I left the broken machine on my desk, packed the girls in the van and drove up to visit Felix at his program in New Hampshire. His school abuts a pine tree lined lake, with a sandy beach made wheelchair accessible by ramps that go right down to the shore. The life guard looked after my daughters so that I could help Felix from his chair. He is so big now, more than 120 pounds. We wobbled, laughing at his weight, and stumbled into the water. The lake bottom was mucky and oozed through our toes.  He yelled, outraged at the cold, then calmed down.  The water held him up; he only needed my hands to steady himself against the uneven bottom. His eyes shimmered.  I spun him around and his laughter rippled over the lake.   

I think about this now, back home, trying to install photoshop.  Without Felix here, I feel diminished, fretting about deadlines that don’t really matter, yelling at the girls for crushing crackers on the floor. How lovely to have patterns of memory that can dilute the power of my desk, allowing me to glimpse his splashed face, his yellowish teeth, his enormous smile, the game way he ducked down to lap up water whenever my attention slipped.  

Broken & Woken

Thanks to Felix and EK & C, I get to meet an unexpected, often delightful group of people, many of
whom I can’t help but fall in love with. There’s my favorite plumber-turned-para-olympic athlete-turned

Felix Applauding Rosanne Cash

NYC Commissioner, my favorite famous poet couple, my favorite speechless child who chants with the haunting beauty of a Gregorian monk. I’d like to use this blog to interview the people I come across, to discuss their current projects and ideas and explore how their experience with disability has affected their thinking, working, moving, loving, being, etc. All this to say, I do not want Woken & Broken to focus only on EK & C, but to extend outwards, spotlighting people who are making the intersection of culture & disability flower, ferment, and bubble over.

That said, I am starting local with a completely objective account of EK & C’s May Soiree, held last week at Littlefield. From a scientific perspective, this was the best gala ever. There

Fabulousness

were three best things:

Best thing #1: The first ever Felix Awards, EK & C’s humble alternative to the Oscars, intended to honor writers, artists and thinkers whose work teases the line between “disabled” and “abled,” tweaking, deepening and challenging the public perception of disability. What a thrill to see Karen

Andrew Solomon

Pittman present the Felix in Art to Jill Mullin, the editor of Drawing Autism, an electrifying collection of art by an international array of artists on the autism spectrum. And I got to meet the incomparable Rosanne Cash! Who graciously gave the Felix in Writing to Andrew Solomon for his thoughtful, in-depth, and analytical study of the difficulties and beauties of raising children with disabilities, among others, in Far From the Tree. I’m still reeling from the moving speech he gave us all.

Best Thing #2: The party!!! I got to wear my sequined rainbow shirt, dance to Miss Ida Blue, hug old friends and meet new ones. There were so many people! Over two hundred. Best of all, I did not organize it. Board members Micaela Walker and Vanessa Connelly dreamed up the circus theme and brought in all those stilted, fire-throwing, balancing, juggling, sword-swallowing wonders. Vanessa’s husband, the filmmaker and

father extraordinaire Zachary Raines made that beautiful movie. The staff at Extreme Kids and our trusty volunteers glued the whole thing together with their consummate flair. Which brings us to...

Best Thing #3: The number of people involved and the roiling, creative energy of those people

The scene...

indicates how we’ve grown as a community. If we can put on a show like that, our barn-raising can’t be so far away...

Broken & Woken

Broken is continuous, a bit of heart break, a knee-twinge, a flaw in mind or memory.  I spend hours throughout the week looking for my keys.  I know that I am supposed to leave them in the same place, but in spite of earnest resolution, I fail to do this over and over again.

Ever since I realized that Felix’s life would be laced with disability, I’ve been mulling over the definition of term.  What is disability but an inability or enormous difficulty doing something that most people can do without much work?  Cannot most people remember where they left their keys?  Why can’t I? Keys. They are so damn symbolic.  Imagine how powerful, not

to mention on time I might be if I always could find the keys.

I got off easy, compared to Felix.  From a medical perspective his body is broken, big blotches of white matter killed off, language centers of the brain mangled, movement severely hampered. And yet there are times, many, when this broken body brings him and those around him unfettered joy.  His laughter arrests conversations, lights up faces, draws strangers to him.  He affects people more deeply than I, notwithstanding my fancy education and highly ranked cognition.

Woken.  Woken in the middle of the night by his whoops.  Woken by his mystery, his silence, his unknowability. The glory of remembering how little I know, about him, about me, nothing really, not even what knowledge is.  Even if I could stay in this broken, woken state, I’d have to leave.  I’ve got work to do. And yet to be here is marvelous.  I thank him for bringing me here as often as he does.  Miranda, his sister, thinks that he can speak with the trees.