Writing Hard

Came across a great collection of thoughts on writing the other day on punkplanet.com and wanted to add to the mix of comments by bashing my own sloth-like writing ways. Emailing a friend I said

The process of writing is like untangling a string of Christmas tree lights. Thoughts come to me in brightly tangled bunches that must be unraveled and arranged into intelligible sentences.

A bad day at work can tighten the kinks, though I do my best to work through it. Some things are more important than angst.

I hate living in a segregated workforce where all anyone ever wants to talk about is America's Top Model and celebrity couples whose combined names would make a good title for a Godzilla flick.

And there I am again, staring at a mound of forest green knots. My brain's like the storage closets at Martha Stewart Living- an overly-sensitive writer just happens to live here.

I had a second job interview on Monday with a local service provider for developmentally disabled adults with vision impairments (shhh, don't tell my boss). It's usually refreshing to be interviewed by another blind person. I like not having to worry so much about making eye contact and playing the part of the hyper- intent/ engaging job applicant as my natural expression is sort of deadpan and aloof. It's not the professional drag I mind so much as maintaining that cheerful exuberance bordering on megolamania that reportedly makes people want to invite you into their offices and give you money.

There's generally less explaining to do with a disabled interviewer since nine times out of ten they will be familiar with the technology I use to do my work. No one would consider the task of explaining how screenreaders work the stuff of airy banter. I get so burned out on "educating" people about my disability that its kind of a thrill to get a respite from this tedious recitation.

I ran into an interesting conundrum concerning the interviewer's guide dog, however, who happened to be off- harness. Imagine trying to conduct an interview with a lumberingly affectionate boxer drooling in your lap. That sentence begs at least one dirty joke I'm sure, but stay with me. The interview was punctuated by the dog repeatedly nudging a slobbery toy into my clenched fist. Mentioning it to the interviewer didn't do much good as he just encouraged me to ignore him.

I thought that was kind of rude- seeing as how his dog was affecting my performance during the interview. Following the interview the dog resisted being put on harness, going limp as a sockmonkey on the office floor. "I think I hurt his feelings," I said.

Whatever, I have a third interview next week. Looks like I passed the Saliva Desensitization Test. Wish me luck.

Glass Helmet

A few weeks ago I was riding home on the bus when someone threw a brick through the front windshield. It made a loud popping sound not unlike a bullet- for a moment no one was sure what had happened to send all the night's debris scurrying down the aisle. Luckily, no one was injured, but, sitting by a window, I had the distinct impression that my own skull was made out of glass. Now I know how the Visible Woman feels.

I've had this sensation before- standing at the edge of the South Rim of the Grand Canyon, walking home from the Loop the morning of the 9/11 attacks and sometimes on airplanes.

My first dramatic encounter with this sensation of extreme physical vulnerability occured during high school when I woke up in an ICU ward for head trauma patients. At some dim moment I noticed three people standing by the bed, the faces of my parents and best friend swam before me like scared goldfish as I was pushed beneath an opaque fog. I later noticed two objects occupying the hospital bed- a framed photo of my friend and a teddy bear dressed like Father Christmas. There was the aural memory of my dad's voice rising in alarm as someone instructed him to tilt my head to one side to prevent me from choking on my own puke, though now it's like it never happened. My sense memory is so detached from any physical discomfort.

I thought I must be dying. I wasn't supposed to be dying. I'd expected to wake up in a general recovery unit, before heading home with my parents, such was our routine, having by this time spent a couple of school holidays recuperating from procedures to correct a cleft palette and under bite. My dad was a doctor. I'd practically grown up in the small rural hospital where he worked. We ate lunch in the hospital cafeteria every Sunday, not the questionable substances found in larger medical facilities. Our hospital served fried chicken and homemade blueberry pie (to us anyway, not the patients). To this day I feel ridiculously at home in hospitals, though the cafeterias are generally a huge disappointment.

The next time I woke I was strong enough to gesture for a pen and a peace of paper to find out what was going on. My jaw was wired shut- that much was supposed to happen, and, as anticipated, I'd discovered I couldn't open my mouth.

My parents informed me that I'd received an emergency blood transfusion. I wasn't sure if I believed them, but I was still too drugged up to care. They said the doctor had "accidentally nicked" a blood vessel somewhere along my jaw line. Well, shit, I thought. But the exertion of being pissed off just made me want to go back to sleep.

During the pre- op exam, the surgeon had strived to convey what a stud he was at performing this particular procedure. In the process of boasting he had convinced himself to forgo the usual precaution of drawing blood from the patient prior to surgery. He'd also informed me that round faces are more attractive than long ones (such as my own). Not the bedside manner I'd been hoping for, but then most of my encounters with surgeons have elicited inappropriate comments. The way I feel about my disability is in many ways incompatible with their medical beliefs, for that is what they are, though a trained physician might scoff at the idea that her/ his practice is based on anything but scientific fact.

The next time I woke, the overhead lights of the ICU had been turned off. From somewhere beyond the bed a nurse told me I was going to be moved to a regular patient room. I could only turn my head slightly to take in the lifeless bodies in the surrounding beds, a sight that made me want to hasten my retreat any way I could. I tried to get the nurse's attention with a series of wild charades, hoping she would note the contrast of my kinesics to the inert forms of her other charges. Best not to confuse anyone. If I weren't dying, it was in my best interest to leave little room for ambiguity. Maybe I'd hallucinated the remark about moving to the general ward.

"Why don't you watch TV for awhile?" asked the nurse, impatiently plopping a remote in my hand.

I surfed around until I heard the disembodied voice of Alex Trebec, hosting an episode of Jeopardy. The first question, or answer, referred to the sequel to Gone with the Wind. Scarlet. That's easy, I thought. But the second clue sounded like the verbal equivalent of a fractal, a Tower of Babel showering me with abstract language that seemed to belong to some futuristic race of super humans, A new thought crossed my mind. What if I weren't dying but only brain damaged? I might not know all the answers to Jeopardy, but before that day, I could have at least understood the clues themselves. Suddenly petrified, I switched off the TV and attempted to do a cognitive assessment of my drug- washed brain.

When an attendant finally arrived to take me to my room, I realized that I'd fallen asleep yet again. So much for the mental exam. Still, sleep had become a reliable friend, for each time I woke I felt more like my usual self. My parents were waiting to welcome me to my new room but had to leave when Visiting Hours ended. After the constant fluorescent buzz of the ICU, I was happy to resume my 48 hour nap in a quiet single room. Each time, waking seemed to bring with it renewed strength and focus. It was late when bright hall lights streamed into the room and a man wearing scrubs entered. I recognized the eerily intense features of the attending physician. He'd attempted to proselytize to me as I was being prepared for anesthesia, offering to say a prayer. Giving someone the cold shoulder from the relative captivity of a hospital bed had proved a challenge but I'd managed it the first time around. He must have been present when I bled out during surgery; perhaps he thought I'd be more receptive to his Bible- thumping overtures following a brush with death. Asshole.

And what, you might ask, is a scared, sedated teenager with a wired jaw to do when a Jesus Freak masquerading as a doctor storms her hospital room in the middle of the night? Not much, though he's damn lucky I didn't have a loaded bed pan at my disposal. He proceeded to pray aloud over the bed while I pretended to be asleep, palpably repulsed and seething at this insane intrusion.

After all, I had not asked for this service and had no interest in reflecting on my mortality, having been spooked enough by my near near death experience without bringing God into the picture. I was quite certain that my spiritual beliefs bore no resemblance to his. I know many people find comfort in spiritual guidance in dire situations but my recent experiences had shown that Vikadin worked just as wel to restore inner peace.

The next morning I tried to convince my parents by way of furiously scribbled notes to have him fired or, at the very least, severely reprimanded. But because my story takes place in Alabama, everyone but me (that is, my parents and the nursing staff) thought it was "so nice" that an obvious lunatic had taken it upon himself to "pray with me" in the dead of night and I was in no condition to rat anyone out to Hospital Administration.

I later learned that I was given two units of blood to restore what I'd lost during surgery. My parents said the ICU nurses were glad to have me on the ward because they knew I was a temporary case. I would get well, in spite of the months of fatigue that would follow, exacerbated by the loss of blood and not being able to eat solid food. Back home, I drank protein shakes by the gallon. I pureed Christmas treats in the blender, spent hours lounging on the couch watching holiday movies, quietly nursing a fresh hatred of religious fanaticism.

It would seem that there are quite a few vampires lurking about in hospitals. Just before my jaw surgery a pretty young nurse attempted to convert me while drawing blood (now that's what I call multi- tasking! Ann Rice would love this). I thought it would ease her mind to mention that I'd already been baptized, but I think she was a bit miffed that she hadn't gotten to me first.

Teenagers are among the most vulnerable patients in that they are less likely to speak out or take legal action in cases of hospital negligence, discrimination or breaches of policy. As a person with disabilities, learning how to advocate for myself restored much of my fearlessness. I have an extra reason to get tested regularly, though its been over ten years since the events of this story took place. My ambivalence towards the medical community has not diminished, though I'm trying to learn to hate the sin and not the sinner.

Years later a friend of mine told me of being en route to an OR for open heart surgery following a heart attack when he was accosted by researchers fishing for clinical drug trial participants.

I can only hope that my late night visitor one day finds himself in a nursing home at the hands of a Wicken orderly, that she may guide his palsied hand to sign petitions supporting the Freedom of Choice of Conjoined Twin Polygamist Lesbian Atheists.

This One's More of a Rambler

Traditional storytelling may not lend itself too readily to the Internet. You'll want to take these tales off line to get the full effect. Below are a couple of resources to help you get started. Where I found my snazzy "haunted grits" t shirt: At the Moonlit Road website you can hunt stories by region and teller, listen to free audio downloads or purchase gifts online. Full texts are also available in this archive.

Check this year's tour dates to hear Utah Phillips' fabulous tales of riding the rails, wry-witted Americana, native folklore and grassroots activism while you still can! Or check out one of his spellbinding collaborations with Ani Difranco on Righteous Babe Records.

Still longing for a form of entertainment that requires a computer screen? Why not indulge in some text-based game nostalgia, circa 1982. Back before the GUI takeover, computer games were played by typing a series of elaborate text commands that generated a scifi adventure narrative also known as Interactive Fiction. Legend has it that you can still find IF enthusiasts roaming the web today. I wonder what Utah would have to say about the role of myth in the digital age.

Walker Hall of Fame #2

Not only does George Sand make the Walker Hall of Fame, she also graces a seat at my Ultimate Hypothetical Dinner Party. Born Amandine- Lucile- Aurore Dupin, she broke many of the customs of her day, dressing in men's clothing in order to walk the Paris streets alone at a time when "noble" women were discouraged from independent travel. She left her husband and noble society to become a writer, taking the kids with, had a steamy affair with Chopin and Liszt, spent a winter or two in an abandonned monastery and was known to smoke a pipe.

Glass Helmet

A couple of weeks ago I was riding home on the bus when someone threw a brick through the front windshild. It made a loud popping sound not unlike a bullet- for a moment no one was sure what had happened to send all the night's debris scurrying down the aisle. Luckily, no one was injured, but, sitting by a window, I had the distinct impression that my own skull was made out of glass. Now I know how the Visible Woman feels.

I've had this sensation before- standing at the edge of the South Rim of the Grande Canyon, walking home from the Loop the morning of the 9/11 attacks and sometimes on airplanes.

My first dramatic encounter with this sensation of extreme physical vulnrability occured during high school when I woke up in an ICU ward for head trauma patients. At some dim moment I noticed three people standing by the bed, the faces of my parents and best friend swam before me like scared goldfish as I was pushed beneath an opaque fog. I later noticed two objects occupying the hospital bed- a framed photo of my friend and a teddy bear dressed like Father Christmas. There was the aural memory of my dad's voice rising in alarm as someone instructed him to tilt my head to one side to prevent me from choking on my own puke, though now it's like it never happened. My sense memory is so detached from any physical discomfort.

I thought I must be dying. I wasn't supposed to be dying. I'd expected to wake up in a general recovery unit, before heading home with my parents, such was our routine, having by this time spent a couple of school holidays recuperaing from procedures to correct a cleft palette and underbite. My dad was a doctor. I'd practically grown up in the small rural hospital where he worked. We ate lunch in the hospital cafeteria every Sunday, not the questionable substances found in larger medical facilities. Our hospital served fried chicken and homemade blueberry pie (to us anyway, not the patients). To this day I feel rediculously at home in hosptals, though the cafeterias are generally a huge disappointment.

The next time I woke I was strong enough to gesture for a pen and a peace of paper to find out what was going on. My jaw was wired shut- that much was supposed to happen, and, as anticipated, I'd discovered I couldn't open my mouth.

My parents informed me that I'd received an emergency blood transfusion. I wasn't sure if I believed them, but I was still too drugged up to care. They said the doctor had "accidentally nicked" a blood vessel somewhere along my jaw line. Well, shit, I thought. But the exertion of being pissed off just made me want to go back to sleep.

During the pre- op exam, the surgeon had strived to convey what a stud he was at performing this particular procedure. In the proces of boasting he had convinced himself to forego the usual precaution of drawing blood from the patient prior to surgery. He'd also informed me that round faces are more attractive than long ones (such as my own). Not the bedside manner I'd been hoping for, but then most of my encounters with surgeons have elicited inappropriate comments. The way I feel about my disability is in many ways incompatible with their medical beliefs, for that is what they are, though a trained physician might scoff at the idea that her/ his pratice is based on anything but scientific fact.

The next time I woke up in ICU, the overhead lights had been turned off. From somwhere beyond the bed a nurse told me I was going to be moved to a regular patient room. I could only turn my head slightly to take in the lifeless bodies in the surrounding beds, a sight that made me want to hasten my retreat any way I could. I tried to get the nurse's attention through a series of wild charades. I hoped she would take note of my alertness in contrast to her other charges. Best not to confuse anyone. If I weren't dying, it was in my best interest to leave little room for ambiguity. Maybe I'd hallucinated the remark about moving to the general ward.

"Why don't you watch tv for awhile?" asked the nurse impatiently, plopping a remote in my hand.

I surfed around untill I heard the disembodied voice of Alex Trebec, hosting an episode of Jeopardy. The first question, or answer, refered to the sequel to Gone with the Wind. Scarlet. That's easy, I thought. But the second clue sounded like the verbal equivalent of a fractal, a Tower of Babyl showering me with abstract language that seemed to belong to some futuristic race, A new thought crossed my mind. What if I weren't dying but only brain damaged? I might not know all the answers to Jeopardy, but before that day, I could have at least understood the clues themselves. Suddenly petrified, I switched off the tv and attempted to do a cognitive assessment of my drug- washed brain.

When an attendant finally arrived to take me to my room, I realized that I'd fallen asleep again. So much for the mental exam. Still, sleep had become a reliable friend, for each time I woke I felt more like my usual self. My parents were waiting to welcome me to my new room but had to leave when Visiting Hours ended. After the constant flourescent buzz of the ICU, I was happy to resume my 48 hour nap in a quiet single room because each time waking seemed to bring with it renewed strength and focus. It was late when the bright hall light streamed into the room and a man wearing scrubs entered. I recognized the eerily intense features of the attending physician. He'd attempted to propspelitize to me as I was being prepared for anesthesia offering to pray with me. Giving someone the cold shoulder from the relative captivity of a hospital bed had proved a challenge but I'd managed it the first time around.
He must have been present when I bled out during surgery; perhaps he thought I'd be more receptive to his religious quackery following a brush with death. Asshole.

And what, you might ask, is a scared, sedated teenager with a wired jaw to do when a Jesus Freak masquerading as a doctor storms her hospital room in the middle of the night? Not much, though he's damn lucky I didn't have a loaded bed pan at my disposal. He proceded to pray aloud over the bed while I pretended to be asleep, palpably repulsed and seething at this insane intrusion.

The next morning I tried to convince my parents via furiously scribbled notes to have him fired or, at the very least, severely reprimanded. But because my story takes place in Alabama, everyone but me (that is, my parents and the nursing staff) thought it was "so nice" that an obvious lunatic had taken it upon himself to "pray with me" in the dead of night and I was in no condition to rat anyone out to Hospital Adminisration.

I later learned that I was given two units of blood to restore what had been lossed during surgery. My parents said the ICU nurses were glad to have me on the ward because they knew I was a temporary case. I would get well, in spite of the months of fatigue that would follow, exacerbated by the loss of blood and not being able to eat solid food. I drank protein shakes by the gallon. I pureed Christmass treats in the blender and nursed a fresh hatred of religious fanaticism.

It would seem that there are quite a few sick fucks lurking about in hospitals, and I'm not talking about the patients. Just before my jaw surgery a pretty young nurse attempted to convert me while drawing blood from my arm (now that's what I call multi- tasking! Ann Rice should be reading this). I thought it would ease her mind to tell her that I'd been baptized at nine, but I think she was a bit miffed that she hadn't gotten to me first.

And, years later a friend of mine told me of being accosted by researchers fishing for clinical drug trial participants- while en route to have open heart surgery for a heart attack.

Teenagers are among the most vulnerable patients in that they are less likely to speak out or take legal action in cases of negligence or breaches of policy. As a person with disabilities, learning how to advocate for myself restored much of my fearlessness. I have an extra reason to get tested regularly, though its been over ten years since the events of this story took place. My ambivalence towards the medical community has not diminished, though I'm trying to learn to hate the sin and not the sinner.

I can only hope that my late night visitor one day finds himself in a nursing home at the hands of a Wicken orderly, and that she will guide his palsied hand to sign petitions supporting the Freedom of Choice of Cojoined Twin Polygamist Lesbian Atheists.

Walker Hall of Fame #1

The best breakup story EVER Artists Marina Abromavic and Ulay walked the Great Wall of China, each journeying 2000 kilometers just to say goodbye.








More Marina!

Catching Up

You might have wondered why this blog was inactive for a few months. Naturally I thought that underemployment would allow this blog to flourish, but soul-crushing 30 hour work weeks spent slinging coffee served only to hasten creative atrophy.

Happily, things picked up in April with the Chicago debut of the first city-wide Disability Arts Festival. I was asked to participate in Humans Being, a group exhibition at the Chicago Cultural Center. Through this event, I had the indispensable opportunity to connect with many talented artists, including Sandy Yi, Madison Clell, Katherine Sherwood and Riva Lehrer. At Victory Gardens Theater I endured a hearty dose of schadenfreude, courtesy of British actor Mat Fraser. The film festival proved to be a true smorgasbord- I wish I could have made it to all the screenings.

I've learned a thing or two about web design at my new day job and made Sisyphean attempts at deciphering the No Child Left Behind teacher certification laws. I'm in the process of deciding which coast to move to and to which artist's residencies I want to apply. I'm planning a trip to Germany to visit a friend who recently moved to Heidelberg.

About a month ago I was adopted by a brown and white tabby kitten- she's a sweetheart.

I've started reading The Fire Next Time for like the third itme because my mind starts racing after only a page or two, thinking about our current retroactive politics. Activism can be a humbling experience.

Minutiae anyone?

Another interesting bit of minutiae from the weekend vaults- watched the documentary Blind Spot about Hitler's secretary during the final phases of WW II. At the end of the war, she was captured and raped as a Russian POW. According to the film's end notes, Traudl Junge had to stop working years after the war due to severe depression. The text goes on to say that she spent most of her subsequent free time "reading to blind people."

You'll never guess how I spent the weekend...

I spent all of Sunday afternoon designing snazzy sqare shotglasses for the semi- inaugural fundraisr of the Illinois Association of Blind Students. As a steadfast poponent of the Bad Jokes as Art movement, I was happy to help out with the look of this little item. Regardless of one's visual accuity, drinking yourself blind- or blinder as the case may be- has never looked/ felt so stylish. IABS will be selling these highly collectable items in all their poor taste glory for four bucks a pop starting in November.