Creeps in a Honda

I have a fear of the Wildwood boardwalk.  It’s not the carnival rides that would surely kill someone with my condition to go on them, or the sticky clusters of inconsiderate beachfolk that will not get out of my way with their stares.  It’s not the tram car, which sadistically operates on the same track people must use in walkers and wheelchairs to travel along the rickety dock-smoothly.  The automated voice “Watch the tram car please” is really just saying “Get out of the way cripple, so that people who are fully able to walk but just don’t feel like it can get transported across the boardwalk without having to run into the likes of you.”  I play chicken in my walker with them, getting out of the mechanical artery path at the last possible moment then staring down at the diapered humanity as they slowly chug by.  My fear is not from the amount of money an average capitalist servant spends there in a day, which is more than what I make on SSI in a month.  It’s not the sunburns, or the crowdburns, or the seagull shit rainstorms.  It’s the memories, and the fear that I will run into them again there.

Jesse had an enchanted childhood in the Wildwood.  His entire family would rent a beach-house together, and him and his cousins would commemorate it with breaking out laughter from broken chairs.  These saltwater-taffy moments were sweet and stretched across time with his fondness for them.  He was getting two days off from work, and suggested that we spend them at the tourist crab-trap known as the Wildwood beach.  I was more than apprehensive about it.  I trepidaciously told him about my emotional allergies to the place.  He understood, and asked if I would rather go to Ocean City instead.  I wasn’t going to let it get me like that.  I told him we would go anyway, for it would be an empty, uncrowded Monday.  Monday becomes you’re favorite day when you are disabled and cannot work, and somehow bitter at the world that has to.

Sunday night we packed up our nouns: bathing suits, beachtowels, our laptop, his guitar, my pink ukulele, and my walker.  We drove the spotless ladybug, a little hybrid Volkswagen wannabe painted orange-red that is almost too small for Jesse’s identity to fit in the driver’s seat.  He’s been borrowing it from my parents while his busted Crown-Vic antiquities itself in the showroom of his mother’s front lawn.  It’s a new car, but it never had that illustrious fragrance of a new car smell.  It just smelled like plastic.  Now that it’s reeked over with the residual aromas of smoke and dominant scented cover-up sprays, I like it much better.

We took the highway to go down.  I once made a drawing of the garden state parkway sign into “The Garden-Gnome Parkway” for my old roommate, who for who knows what reasons collected those diminutive humanoid novelties.  Exit 51 was the one for the house that I used to rent during my sophomore year of college.  “The golden days”; alchemized with the fondness of absence.  I’ve told Jesse, but there is no better way of telling than to show.  I asked if we could take a small detour and go by the old place.  We had nothing else to do, so we might as well go sight seeing in my savage wilderness of memories.  He made the turn and I straightened out my thoughts. It had been over three years since I’d been to the Mystic Islands shore-house, I didn’t even know if I could even remember how to get there.  I called upon the sagacious wisdom of Tucan Sam and followed my nose through the familiar sights.  Everything around was exactly the same, the restaurants and shops had not moved, and even the people in them seem to have not gone anywhere in all those years.  The same community children were outside irritating the same community sidewalks.  The bait and tackle-men were out with their customers and crab cages.   The “Shop N’ Bag” grocery store was there with all of it’s sign letters lit,  (although I remember when they had burned out to say “Ho bag”). The pseudo-wawa called “Hometown Market” was at the end of where my old bicycle route used to be.   It smelled like seawater and sentimentality; even the sun shone down the same.  The only things different were me and Jesse.   

I dug up from my head: “Mathistown to Radio Rd, Radio to Bayview-”.  At the corner of Bayview Rd was a watch-tower.  It had watched me many times.  I was pointing out sights and describing moments at them, when I got to the parking area in front of the tower-

“That’s where-“

I paused for a moment and thought of how to collect the words

“That’s where we used to park the car and hang out.”

I directed Jesse to drive up further and turn onto “S. Spinnaker”, the little forgotten back-road that my Mystic Shack had been located on.  I really expected to see the place torn down.  It was infested with termites and deteriorated when I had lived there.  The walls and windows were eaten away in many places so badly even that in my one roomate’s room you could actually stick your hand out the wall underneath of the windowsill and wave to the neighbors outside.  In the wintertime I purchased some Home-Depot insolation marshmallow-fluff caulk, and filled all the holes up like a hostess cake to keep the house isothermal.  We had a lawn of little stones like the bottom of a fishbowl, and a backyard of lagoon water.  To my discredited surprise the house was still standing in one piece.  I got out to look at it, and Jesse got out to smoke a cigarette.  He knows not to smoke with me in the car; my lungs are made of tissue paper.  He came around my side and helped me out and up into a standing position.

From out the sunny abyss a familiar figure approached us.  A middle-aged stout friendly Italian family-man, that I recognized to be my old landlord.  He did not recognize me, but he recognized the opportunity of out-of-towners he could try to sell his condemned property to.   I broke his hello with

“Hi- I’m not sure if you remember me, but I used to rent this house from you with my friends for college a few years ago.”

Of course I knew he remembered me

“Yes, weren’t you gothic back then- the all black one?”

He looked at Jesse, and I knew what he was thinking.  I’m glad he didn’t ask about it.  He asked me about college, I told him I was working for a magazine as a writer now, I did not mention that I had been forced to drop out or that I was now disabled with a progressive neurological condition.  I leaned against the car so he could not see my impaired balance, and kept my cane in the car. 

“You guys wanna take a look back there- go ahead.”  He verbally took down the invisible fence of illegal trespassing for us.  I thanked him then held onto Jesse as we made our way as a stable-unit around to the backyard.  I showed him the oceanic garden.  I told him about the time superbowl came around and my roommate and his friends lost a bet on which team would win, so they defeatedly had to jump in the January water completely nude and 4 ft taller than it.  One guy hit a pipeline then proceeded to come inside and dance around our kitchen naked, dripping with blood and lagoon water.  I told him about the afternoons coming home from class and blowing giant soap bubbles with Lauren and Owen off the dock-of-a-deck.   I remembered the time Frank ate a completely raw burger off the grill.  I remembered painting the lamps that we never used other than to hang Lauren’s Viking-lady tinfoil costume she’d worn to frighten the pizza man.  Owen’s room was always lit red from a tinted novelty light bulb we’d swapped in there when we needed his regular one for the kitchen.   The sun was beginning to set, and the color of the sky started to remind me of that, and the time he had drunkenly passed out on the patio with a pipe and a plastic Darth-Vador helmet. Every crab we ever caught back there we named “Thomas”, or an extension of that: “Thomasina”, “Giganthomas”, and “Samoht” the backwards crab.  I remembered the look on Frank’s face when he came home to the surprise birthday party I threw for him.  It was almost like that scene in the Patch Adam’s movie, but I didn’t recite Elizabeth Browning poetry, and the whole house filled with only green and yellow balloons, for he was a green-bay packers fan.  I remembered what it was like coming home to this place, and I told Jesse it was time to leave.  As we made our way back to the car I pointed out that all of my caulk-spots were still there, especially the one underneath the windowsill.

Exit 44 of the parkway was the one for the house I had stayed in the following junior year.  Really there was no junior year of college for me, but my three roommates spent it there while I took leave for my sudden onset of a medical condition.  I wanted to show Jesse everything, so I asked him to take us there as well.  He was curious to see it, but the sun was setting and the dusk irritated his eyes.  I persuaded him anyway with the opportunity to grab another cigarette.  The lady-bug made a right of the parkway, and I wondered if it was wrong for me wanting it to.  We arrived at “Sturbridge Manor” at twilight.  It was a one-story house in the deep woods that Lauren had euphemized that for a Halloween party we never ended up having.  The sky was a sedating into a blue-grey, and the house only appeared as a shadowy silhouette with the lights peering out the windows like eyes of a jack-o-lantern.  I did not want to alarm the new tenants by lurking at the end of their driveway, so I made my verbalized window-tour brief and to the point:

“That is where I died.  That room over there with the window at the bottom, it was so low that you’d have to sit on the floor to look out it.  That was my room.  I only spent two nights in there, the first night was right before we moved in, before there was a bed, and after I had been poisoned with antibiotics to the point of my brain herniating. The local hospitals released me without knowing what to do, so I had to spend days in there on the floor with towels over my overly sensitive eyes from the photophobia without any idea of what was going on with me.  My suffering stabilized, and it became purgatory for me.”

Jesse was rubbing his eyes.  They were dry, and it was bothering him immensely.

“A bed was put in there eventually, but I never used it.  The next night I spent in that room was after I had moved my stuff out.  I could not sleep with Frank in his room the night he told me it was finally over.  So I slept in mine, again on the floor with towels over my overly sensitive emotions.  This is where I was born.”

Jesse told me that he desperately needed eye-drops and a cigarette, so I suggested that we pull up to the end of the street and put the hazards on so he could get out and do so. 

We parked at the stop sign at the corner.  Jesse got out, and the hazard flashers lit up the red octagon like a futile warning.  It was more rhythmic than my pulse.  I read it on beat, and synchronized it’s flickering presence with the Platters “twilight time” that was playing through the car speakers on my I-pod. I had listened to that song before undergoing anesthesia for my first brain and spine surgery, and after kissing my ex goodbye and telling him that I loved him.  The music came on right after the last “I love you too” that he ever said to me and really meant.  The four letters flashed like a sedated strobe against my raving thoughts.  I remembered those moments after the night fell.  In the living room- where I came home half dead, disfigured, and traumatized- where Lauren told me it was going to be ok, and I smiled and stopped crying although I knew that it really wasn’t.  I remember becoming strangers with her and Owen, losing all topics of friendly topical conversations. We grew apart like Galapagos finches, I had evolved from the tragedy and truth of life.  I remembered waiting on the floor at that window, waiting for Frank to come home from class, and wall-flowering a world I was no longer a part of.  I remembered the hours I spent locked up in the bathroom scrutinizing my disfigurement, obsessing over the obscenity of what the surgeons had done to me.  There was a tri-mirrored medicine cabinet overtop the sink, and the two side cabinets swung out so that the right positioning could allow the reflection of a reflection…the endlessness of a single appearance.  I watched an infinity of remorse in the paper-chain echo of my swollen neck and tilted-down skull, and felt the same excruciating neurological symptoms that I had sacrificed my human form to get relief of.   The damage was done, I could never be myself again.  I remembered the backyard right after it had snowed that January.  I remembered lying down in it to get away from all of the pain.  I remember Frank coming home early enough to stop me, and throwing me in the hot shower while screaming out of his mind “This house is for sane people, THIS HOUSE IS FOR SANE PEOPLE ONLY!”  I remembered the day he left for the military.  It was August, right before what would have been our senior year, but couldn’t even wait to finish his last year of school and get the degree he had slave-driven his brain for.  He had to get away from me, even after I told him that I was going to hang on through this just so that we could be together.  He said that my medical problems had gotten too much for him to handle, and abandoned them for an easier life of self-sacrifice and arduous obstacles in the National Guard.  I remembered him saying “This wasn’t supposed to happen to us, this is supposed to only happen to people when they are old.”

Three years.  Three years of sharing a life, sharing a love, sharing a bed.  I remembered how easy it was for him to forget them.  A few weeks later he moved onto another girlfriend he met in training and stopped contacting me.  In that same few weeks I underwent my cranio-cervical fusion-revision surgery that involved the shattering of my skull and spine to reset it with different titanium hardware in a new fixed position that would allow me to at least be able to fully open my mouth again.  The procedure was so severe and high risk that only one place in the country was willing to even do it.  On record it is the most invasive procedure ever to be done at The Chari Institute, whose surgeons have operated on over 3,000 people. It took 19 hours, and 30 hours of anesthesia, for I was so swollen that if they had woken me up any earlier and taken the intubation tube out my airway would have surely closed up.  Afterward I refused all morphine and analgesic medications, and I used the pain to fill up my hollowed out heart.  The stop sign was still flashing in front of our car.  It was time to head it. 

Jesse finished his smoke and got back in the car.  He could tell I had been transmogrified into my thoughts again.  Tear tracks are impossible to tread around when you’re wearing liquid eyeliner.  I expected him to ask me about it.  Instead he complained about his damn eyes still being dry.  So I complained about his complaining:

“Right now there’s electric lightening striking my cranial nerves, the pain is intense, and the vertigo makes this car ride into a carnival ride…but all I’m not thinking about that….I’m thinking about how much this trip means to me.”

He looked at me through irritated ocular balls of crystal wisdom.

“I don’t mean to come off as an insensitive asshole, I’m just worried about driving us there safely, that’s all.”

He saw that I still looked sad.

”I love you.”

I smiled sincerely at him.

“I know you do, otherwise you wouldn’t have driven me all the way out here.”

He understood everything without the words.

Wildwood was where I had spent every summer with Frank.  It was his hometown, and he took me around like a native guiding a shipwrecked foreigner, lost in his land and in his love.  He taught me survival in South Jersey, with the cheapest pizza places, and who was being friendly and who was just on drugs.  He took me everywhere in his town and in his story.  Love is a journey through another person.  The boardwalk was a few mile stretch of escape for him from a broken life and a fractured childhood.  We rode the Ferris wheel together, even though he was terribly afraid of heights.  He once won me a sleepy-moon Care-bear plush that I named “Val-yum” and lost the next day.  We would go broke into the bookstore and use it like the library.  We would talk with every step, every foot forward we would go a little deeper.  We discovered each other through the cracks between the planks. 

When Jesse and I arrived the next day, I found that the boardwalk had been entirely remodeled.  Due to failing business from the economical recession, none of the stores had stayed the same, not even the T-Shirt shop that my best friend Amanda had worked and essentially lived out of.   It was a different place, and I could enjoy it that way.  We played skeeball- and Jesse stationed himself behind me to help me get the momentum and balance needed to throw the ball. Taste testing the difference, he made me very jealous that I didn’t get the pina colada flavor of polish water ice.  He walked and I walkered down the boardwalk talking about Pollack curses and T-shirts he had stolen from the stores back in the delinquent phase of his youth.  I told him that if I bought a hermit crab I would paint a portrait of Emily Dickenson on it’s shell.  He didn’t get it at first, but then he laughed at himself for the delayed comprehension.  We talked about the hypothetical couples T-shirts we would have made for eachother…his for me would say “Poop comes from here”  and mine for him would say “Capitalism’s Bitch”. He cared more than I did that everyone was staring at me.

The ocean water was too cold to swim in, at least for myself to.  Instead I took pictures of Jesse backyard wrestling the waves with his bull-shark body as I built a small igloo in the sand.  Igloos are much easier than castles to build when you lack the tools and juvenile energy.   Jesse came out of the salty green froth, and helped me build a snowman in the sand.  There’s a reason snowmen are made in snow, sand is heavy and dries fast.  After two Babylonian collapses we decided to downsize to just making a snow-fetus instead.  We gave it a Mohawk of seashell shards and a Gene-Simmons tongue from a strip of seaweed.  Our backs were burned into on the areas I had missed with the sunblock.  My fingerprint streaks were branded across Jesse’s back.  He liked the way it looked.

I thought that my thought’s would all be “What if he’s here, what if he can see us?”.  My ex currently lives in Wildwood, we even had to go by the street his place is on to get to the boardwalk.  I thought that I would thinking about him, but my only thoughts were about how difficult it must be for people in wheelchairs to get onto the beach, how much the red freckles surfacing in the sun on Jesse’s face brought out his clear blue pool-water eyes, and how sea snails must be made of a different substance than regular snails because the saltwater doesn’t dissolve them.  I then thought about how I was cured, even if it still hurt just as much.  The day was not about remembering those old times, and neither is this life.  It’s about making new times, and beating your best score.

I woke up to Jesse that morning in a flamingo pink motel room. Captivated by the getaway novelty, I marveled at every one of his molecules.  His eyes were shut and crusty and his breath was hot and stale.  He was warmer than the blankets. The night before we had had a fight, made up, made a song, then made love (the fight had nothing to do with my ex or old memories, it was about which lyrics to use at the beginning of the song chorus.) I kissed the bristles of his face, and lovingly squeegeed him with my Roman-nose.  He was asleep on his back showcasing the calligraphy tattoo on his chest that reads out the pessimistic message of mortal truth:

“Life will never last”

I realized that if I had never died there I would not be here in this life with him.

 I took out my liquid eyeliner and graffiti-ed underneath it

“Love will”

Smiley face
drawn on to your grave
Darlin'
the drink is laced
with the cloth of whiter days

and it's all gone without a trace
draw it back free-handed

Creeps in a Honda
why are they pulling up to this house?
the twilight is fonder
of all of the thoughts we put to sleep
Saltwater deep

flowers on a motel blanket print
dry eyes
moisturize
lay in the bouquet
sites of where
we buried our visions
should we dig them up for old times sake?

Creeps in a Honda
why are they pulling up to this house?
the twilight is fonder
of all of the thoughts we put to sleep
Saltwater deep

http://www.youtube.com/greatneckband : "Creeps in a Honda"

(Note: We actually drive a Hyundai…but that doesn’t rhyme with anything other than Bonzai.)

Swimming in thoughts; Drowning in memories.

The aestival sky is new and blue, powdered with clouds suspended high in their avidity to watch the day.  I can look up to find the faces in them.  I do so, and smile back.  The in-ground pool is in the shape of a lima-bean; the water is cucumber green from the chlorination.  People are swimming in refreshment.  I do not know any of them, but I recognize the game they are playing.  A young lifeguard stands out at the warm concrete crusts, tossing pennies in the deep end like wishes in a well.  The others dive down to find them, to make them come true.  Turning to me with his glazed physique and whistle-charmed necklace, he throws a large handful of coins into the water beneath us.  Standing on the edge, he beckons me to go and follow them. He smiles as he blows the whistle.  I dive in too fast too notice.

The water hits like a head-on collision.  In a quick burst of light, like the segway to a flashback or a near death experience, I find myself smacked into another dimension of weightlessness and serenity.  The water is calm and clear; the sun at my back, warming the natatorial womb.  The pool floor is blank, freckled with the shining reflections of copper.  Twinkling they sink like falling stars.  Resting at the bottom in Cartesian order, they are perfectly plotted in symmetrical array.  I plot the coordinates I choose to take from.  I swim down for the one datum-centered at the origin. 

As I submerge toward the white, the water pressure constricts me like the stomach of a snake.  I am smothered by the surroundings, every inch down and the hold grows tighter.  My whole body is strangled as it heavily treads towards the benthic layer.  I try to hold the prize in my site, but my head is fixed solid with titanium in a forward position.  Because of this, I cannot see where I am going.  I can only feel the surmounting compression and the fluid filling my nostrils.  I’m not sure how much further it is to the floor, so I swim down with my arms out, like a blind man preying to an upside-down god. 

I yearn to feel the solid concrete at my fingertips.  I feel I must be close, for I’ve been swimming for so long. I’ve lost so much air already; my lungs are growing hungry. The veins in my head are condensing; I can feel each one like coral around my brain.  They clench up from the pressure.  Water fills the hollow back of my skull.  It barges into my head, like a tactless thief to steal my soul.  The sutchered doors of my skin burst open, and blood and hell pour out volcanically.  Bits of brain float around me like curdling milk in a sour acid.   The aquamarine color becomes a puncturing crimson; I watch as the blood washes through my eyes.  Pennies are falling up from what has become the bottom of my world.  As they levitate by, I reach my hands out to seize them.  They fall right into my eyes, and upon closing them I see white.

In most people’s nightmares they are chased by monsters, or pursued by elaborate fantasies of fear. In mine I am haunted by what I could once enjoy.

Pseudomeningocele: Bubble-bubble toil and trouble.

“Whatever you do, don’t have any more surgery done.”

“But I’m progressing, and rapidly losing my ability to balance and control my extremities.”

Dr. Mokri at the Mayo Clinic said that my MRI was fine, my vestibular nerve testing was fine, therefore I was fine, and recommended that I go to “Pain Camp”.  I wanted to hurt him. He also said that he believed there was a strong psychological component to my symptoms.  I wasn’t sure if his conclusions were based on the atypical presentation of my ailments, or because I had a pink ukulele dangling from my walker next to a handpuppet of a pheonix.  Crazy people get sick too.

All we had to go on was a bubble.  A bubble of mystery fluid that was hanging out behind my brain on an MRI.  Ever since my fusion was redone so that I could open my mouth again I had felt like there was a thumb pushing into my brain, like a hitchhiker trying to take a ride into my mind.  Always there….it pressed on my sanity.  Every step I took…push….push…push….every movement of my head….even when I wasn’t moving it was there pressing on my patience.  It hurt immensely, but not in the typical way we feel pain…it was that nails on a chalkboard sensation of “Dear god make it stop”.  I am an atheist, and it takes an awful lot to get one of us to cry that in our heads.

They called it a “pseudomeningocele”.  They said they were common after chiari surgery, and that nature would take its course and it would absorb within the year. A year and a half after its debut appearance on my MRI, the bubble was slightly bigger.  In that time I lost the ability to walk up stairs, bend down, balance without difficulty, open jars, or lift anything heavier than 3 lbs.  None of these were symptoms of a pseudomenigocele, nor were they symptoms of chiari, or even ehlers danlos syndrome for that matter.  They were however symptoms of a cerebral spinal fluid leak. Supposedly most CSF leaks heal on their own, so I was advised not to seek treatment for it, and refused diagnostic gadolinium testing by the Mayo Clinic.  The headaches had become debilitating, and pain medication was not successful in treating them.  Caffeine however had a pronounced analgesic effect, so I began to swallow espresso beans like pills to treat the pain, fatigue, and blood pressure irregularities.  The spinning was drilling me into the ground.  It felt like I was getting weaker by the week:

 http://www.youtube.com/greatneckband#p/u/8/6W9bPK6PNTY

“Common after most Chiari surgery maybe” Dr. Bolognese spoke in a thick Italian accent.  His name means “sauce” in Italian and in America sounds like the hybrid of bologna with mayonnaise.

“But I have never had a pseudomeningeoceole happen before with my surgeries…so this is…very disappointing.”

I smiled at him with the mouth he had given back to me

“Better luck next time”

He agreed to open up my brain exploratorily to see just what demons were hiding in there.  I knew what demons could be unleashed from such a thing.  He could find nothing, he could find something, he could make something worse, he could make it better, her could kill me, he could save my life.  Life is the ultimate thrill to gamble.

The night before the surgery I recorded a song with Jesse in our glitzy New York hotel room.  He held me as I cried, and sung me Freddie Mercury’s “Love of My Life”  until my nerves settled down into Nirvana.  Sedated and sublime, I then told him:

“You are not the love of my life, for I met you after it ended, but you are the love of my death, and all that is thereafter.”

http://www.youtube.com/greatneckband#p/u/1/HesVlGhrdmY  and that’s how that was made.  It’s a quick-slippery slop-job recording, because we were holding onto the belief we’d be able to re-record it better someday.  We would make it through.

Jesse had written an acoustic ballad called “Wake-up” that he wanted to play for me as soon as I came down off the anesthesia.  I told him I might not even remember the first day after brain surgery, so he had my mother videotape him playing it for me instead.  Unfortunately I do remember waking up, I was alone, and had a intubation tube in my mouth stealing away my voluntary breath.  My jaw was snakelike dislodged and I kept gagging on the plastic edges of the device.  I was like that for three hours, so that entire time I played his song in my head.  Finally a nurse realized that I was awake and told me to nod my head if I understood her (she did not know my head was fused solid into place.)  I tried to show her with my hands but they were strapped down to the bed (so you can’t pull the tube out yourself)  When they eventually pulled it out, I vomited mucus and smiled…sideways.

My head felt like Athena and Chuck Norris had sado-masochisticly fucked their way out of my skull.  My left leg was throbbing as well, and I wondered what kind of phantom nerve phenomenon that was from. I looked at the clock, it was 3 PM.  Either the surgery had lasted an hour, or it was the next day, and judging by my exploded head I concluded the latter.   Finally I saw a familiar face, I was almost as happy to see Doctor Bolognese. as I was my own mother.

“It was…complicated.  But anatomically…I’m happy now.”

I found out later that the bony “struts” they had put in to hold in my revised cranio-cervical fusion had overgrown…causing the fake bone to grow and calcify directly over and into my brain.  Taking a titanium hardware wire with it, about the size of a thumb, it was piercing into my cerebellum scratching at the surrounding dura and causing leak after leak to occur. Dr. Bolognese removed the frankenmess: scraped off my brain, drilled my skull from the inside out to reshape it correctly, and put on a new dura patch using a muscle-graft from my left thigh.  Thus the bubble was burst:  it was pooling spinal fluid from a tattered dura, caused by a fusion fix-it surgery, caused by a fusion fucked-job. BAD PUN ALERT…it had gone “totally haywire”.  The best part is- none of this EVER showed up on my MRI.  If I had listened to the experts at the Mayo Clinic, I’d would most certainly be facing inevitable paralysis and possible death.  Like my friend Steve said

“Mayo is for sandwiches, not for medical advice”

Currently I’m in recovery, my symptoms are still all present, but brains don’t heal as fast as we need them to.

Hurricane in my lap

Being physically disabled, I have a bitter distaste for professional sports.  Watching people show off their functioning physiology and genetic luck just scrubs me the wrong way sometimes.  It’s even worse when I consider that these professional athletes make more money then the doctors who treat their sport-related injuries. It sickens me to think that half a million dollars per week that could be used to push forward with cancer research or robotic limb replacement is instead going to a guy for running around in circles in an effort to make the average person look weak.  I recently moved to Philadelphia to live my boyfriend, Jesse.  We live in a small townhouse owned by our friend Rita, and although I love them both, they both love baseball.   A friend of a friend cannot be my enemy. So when Rita purchased tickets for the three of us to all go out to a Philadelphia Phillies game together, I reluctantly agreed to go.   At least I could take my camera and get candid shots of the fielders squatting down and wiping the dirt off their asses.

Jesse had work until five, so me and Rita had until then to estrogen out on outfit planning and lady-face painting.  She decided she was going to wear a colorful bikini bathing suit top under a thin white “wife-beater”, that contradictory to the name, was printed on with peace signs.  I was going to wear a black corset.  I pinned up what the brain surgeons had left of my hair into a 1980’s giga-queen bouffant.  Rita looked like a hygienic hippie in cowgirl boots.

“I’m gonna bring towels for us”

Rita was confusing sometimes. I inquired of her motives.

“Because we’re wearing mini-skirts, so we shouldn’t have our girl stuff touching up on the dirty seats.”

Rita was either a genius, or a paranoid hypochondriac.  I made fun of her for being both.  A costume chameleon, she quick-change modeled for me the outfits she had picked out and designed for characters in a movie that she’s been working on.  It’s an independent film about stalker lesbians.  I’m hoping to get some of our music in it.

Jesse came home grumpy as usual.  He’s tired of his job, and this summer heat has really been blistering up his anxiety.  He’s the only guy I know who’s fun to love even when he’s totally miserable.  He caught me in the kitchen making out with a pineapple popsicle.  We had a brief, intimate, three-some hello, and his mood instantly improved.  Stepping back to be a bystander of my outfit, he commented

“Wow, you look beautiful.”

Little words that mean so much. I’m not crippled or disfigured when I’m in his eyes.

The three of us plotted out our strategic game plan: Rita would drop off Jesse and me at the Citizens Bank stadium, he would assist me to our seats, she would park the car and meet us there, and all would be breezy-cheese and dandy-ligers.  As we arrived, we noticed the first problem: people.   Swarming around the stadium hive, these city-drones were not the type to be conscientious of someone with a mobility problem.  I lack balance, coordination, and nerve strength, as well as the back of a skull.  One bump in the wrong spot, or a single fall, and it could very well be the end of my life.  A photographer at the gate noticed us and took our picture for the phillies website.  With Jesse being a Golem-built mass of masculinity and tattooed temperament, and me, a smiling skeleton with fire-dyed hair- we tend to stand out in conventional places like a partially-severed bleeding thumb.  An attendant who saw how I was having to use Jesse for guided walking assistance asked if we were ok.  We were fine, until he explained to us that our seats were forth row from the very top of the stadium, and also that no elevators went up there.  As so began what would probably be the greatest fitness challenge of Jesse’s life, and the most precious one of mine. 

I wasn’t counting the number of flights, or the rate at which he was climbing them while holding me up. I was too focused on the speed of his breath, and looking down to watch the world shrink in size.  He had to stop at a few check points, and each time I felt like reassuring him like a wresling coach:

“C’mmon Babykillz, just a few more steps, you can take em’….just pretend they are the heads of pretentious wealthy hipsters.”

 We finally made it up to Olympus and I licked the salt off his lips.   Heights have an effect of my vertigo, but while it is noticeable, it is not uncomfortable.  It’s an amusement parking-lot….just taking a slow ride to nowhere.  We rocked in the sky.  Rita met us up there and we marveled at the flea circus below.

“I used to play softball as a kid.  I wasn’t any good at it…but I could run faster than anyone else on the team.  They used me to get runs in and set me up in the outfield where I would sit on the ground and make braided bracelets with the grass.”

I was normal bodied as a child, however I did not have a normal childhood.

“The teams were all named after sponsors, like “Dominoes Pizza” or “Ritas water Ice.”  Our team was “Orlando Chiropractic”; the name barely fit on the shirts and none of the girls could even pronounce it.  We were like 10 years old then; all we knew was that Orlando Florida was where Disney world was.”

Jesse played football as a kid, but watching baseball was still special for him. Growing up, his dad would take him out to a ball game once every year.  Something good to look forward to, that had become something great to look back on.  Rita liked looking up at the players on the big stat board screens to figure out which one she’d be most compatible with.  Chase Utley.  She would gladly run the bases with him.  He’s the reason her pet rabbit was named “Chase”, but not the reason that it humps her every chance its let out of the cage.

We observed the game like Physicists.  Listening to clanks of the bat, and quantitatively comparing those sounds with the visual moments of impact, it struck out my mind.  It’s high velocity action; I was glad to be sitting so far away that no foul balls could possibly be caught with my head.  My camera zoom was not powerful enough for game photos, so me and Rita took segmented set pictures of random body parts instead.  My favorite was a photo of our lady legs crossed in together with the captioned back of a woman’s shirt “CHOOCH”.  Jesse left to go get food.

The wind started to wind up.  I was taking blonde Pocahontas shots of Rita, when the sky turned completely bipolar.  I watched through the viewscreen of my camera as the ominous forces greyed their way across the sky on cumulonimbus dragons.  They growled at us with thunder. The knights of the field knew they had to delay the current tournament, and set their valiant efforts toward defending the diamond.  The majority of our pictures were taken of them wrestling the wind, tarping over the field with goliath’s garbage bag. Rain had not arrived yet, and we were hoping that she would stand us up.  There was no getting me back up those stairs, so we remained seated in our front row seating for the sky show.  Jesse came back with snacks and soda for us to enjoy. He made the comment:

“This is my dad getting back at me from the beyond for going to a game without him.”

I didn’t see it happen, but the way he explained it later is how I remember it.

“It was like watching impending doom flung out at you so fast that you catch every moment of it getting closer.”  The sky tore open and thousands of liquid arrows launched down at us like in the last scene of the movie 300, archered by the high altitude hurricane like winds.  Their forces were so ferocious that we could not see or stand, something that I am quite used to by now, but for them it must’ve been absolutely terrifying.  There were screams all around from the great masses of attack victims.  Worried about the fresh incision wound on my head, Rita’s inner hero took the towel out from underneath her and threw it over me. I slid my damp lower half over to give her mine.  I was so sorry for making fun of her bringing those towels, we now were wearing them like armor.  Jesse valiantly protected the chicken fingers by storing them all safely in his mouth.

The sky stampede caused it to start hailing frantic bodies in search of an escape. Soaked red Phillies T-shirts rumbled around like boiling blood, nature can always bring out the true animal in people.  If it were survival of the fittest, I would have been totally fucked. Thankfully I had my Golem with me, my lovely human plow truck.  It was a double-decker moshpit for him, fending against the flailing bodies, as well as the insubordinate hail.  I was not afraid.  I laughed most of the way down encapsulated in his bombshelter arms.  He told me later he was having a panic attack the entire time.

We made it down the mountain of steps to the holy refuge of the women’s bathroom.  Leaving me and Rita to the sheltered safety of the convent,  Jesse went on to brave the perilous battlefields of the parking area.  We took more photos of ourselves looking sad and creepy.  Drenched wenches in a saloon of sewage.

The rain stopped and the game started back up the moment we got home.  We removed out waterlogged corsets and swim suits, and put on Phillies t-shirts and dry underwear.  Jesse dried off in the shower, and Rita and I, after making hot tea and cocoa, watched the game on TV.  Ironically enough, we got to see a lot more of the action that way. 

The Phillies evidentially lost, but I wasn’t aware of that as we went off to bed. Cuddling up to my Gargoyle, I told him,

“Jesse- if that WAS your dad tonight- then he must have wanted us all to have a really memorable time…. ‘cause I never thought it could happen, but I just had some of the greatest moments of my life at a fucking baseball game.”

http://www.facebook.com/media/set/?set=a.626964745920.2112002.45905211

Missionary Impossible

It’s unhappy what’s happening. Whenever a conversation gets awkward with the truth,  I always pull out with “But hey- at least it’ll all make a good book someday.”  I say this often, but I have never sat down to coagulate the story.  So I’m finally clotting up my conscience and conceiving an autobiography titled “The Ghosting Eye”.  Palinopsia, my first symptom, is also known as “ghosting”.  The chapters will be out of order, linear to my current thought processes.

Each chapter will be the criminally confessed explanation of a song, or a few songs all on the same area of impact.    It’ll cover the basics and the acidics.  Some names will be changed and exact events will be hypermobile, giving protection to those who deserve it, as well as those who don’t.   My lawyer of a mother says that using Dr. Verma’s actual name could dress us up in lawsuit.  I’d prefer to streak around entirely in naked truth, but if I have to apply euphemistic pasties such as “Dr. Vermin”, then so be it.   My ex Franks last name will be as silent and hidden as he currently is to me.  Ironically enough his name was how we ended up together in the first place,  I read his nametag at college orientation, and thinking it was ridiculous, forged it on a survey about on-campus living. I checked boxes saying that I drank all day and was not a US citizen. Unfortunately he found out and we started dating afterwards.

Our band’s previous guitarist, and my most fond regret, will finally be repented.  I am not sorry for my actions, but I’m sorry that their consequences caused him to get hurt. It bit the tube that feeds.  In this book I’ll refer to him as “Javier” the name he was born with before being adopted out of South America.  Javi was my personal caretaker and living assistance for almost two years, and my best friend for almost my entire life.

 

I could have told you it was fine

I couldn't hold you in the lies

plant a plastic garden in your mind

never dies

I wanted to make you the truth

I couldn't change my point of view

A pair of mismatch socks inside the shoes

never lose

I never meant to hurt you baby

I never meant to hit that well

I never meant to burn you baby

the heart is hot

when it's in hell

when it's in hell

You were I bridge I was glad to take

you were never a mistake

you held me through a universe-quake

kept me safe

You never meant to lose it baby

I gave you too much to lose

We were broken glasses baby

saw through the shards

to make it through

make it through

All of the demons we suppressed

asleep but really not at rest

Plant a plastic garden in your chest

make the best

I knew I wouldn't last forever

So I thought it wouldn't be too soon

I never meant to call you baby

But I meant it when I said

that I loved you

I loved you

Red lights telling us to go

take the bow for you at my last show

Plant a plastic garden in your soul

watch it grow

watch it grow

The songs mentioned will be recorded professionally and a CD of them will be released in cahoots with the book.  This should give me on days when my roommates are at work and I'm alone unassisted something to do instead of following nerve damage rainbow hallucinations and cracking what’s left of my skull open on the wall:)

Sick and Sexy

When I first saw my reflection after the cranio-cervical fusion surgery I cried inside my head "That's not me. THAT CANNOT BE ME!"  I would have cried those words aloud, but my head was fixed downwards into place in such a way that I was unable to open my mandible more than half an inch.  It had been explained that I would still have motion of my head after the surgery, but I had none.  Someone had lied.  Someone had blundered.  The orthopedic surgeon, Dr. Verma, was unaware of the effects of the surgical hardware he had implanted into me.  He was also unaware that a human head should go on straight.

Because of the surgery I had to spend a month hospitalized, not in a rehabilitation setting, but in a psychiatric ward.  Completely depersonalized, I did not feel like myself, I did not even feel human.  I was a singer who now could not open her mouth, I was a lover who could not express intimacy in the way she had always done.  I was caged...from the inside out.  I became sick with insecurity.

Afraid of photographs, and haunted by mirrors, I developed post traumatic stress on top of body dysmorphic disorder.  For months I spent the majority of my time hiding in the bathroom, watching the strange creature staring back from my reflection.  I named her Anomie, or rather she named me Anomie.  She was a monster, and she was beautiful.  I could not feel human, but I still wanted to feel like a lady.  So one day I put on my best pair of stockings, my best lace-up corset, my best kit of makeup, my best spirit, and I took a set of photos posing confident and seductively.  I found myself in those photos.  And I became sexy with insecurity.

I developed a passion for medicinal photography, and modeling of the sick, disfigured, injured, and beautifully broken.  I started a project called "Sick and Sexy" that will become a non-profit organization dedicated to the purpose of saving the sense of self and sexuality from sickness and somatic tragedy.  I am working with my closest friend Amanda Detwiler, a vixen victim of Limb Girdle Muscular Dystrophy, on creating a website for our dreams to reek their sexy havoc.

Please visit our facebook page at: http://www.facebook.com/pages/Sick-and-Sexy/106131966090074?ref=ts

In 2010 I had a corrective surgery to re-angle the titanium skull-rods so that I could open my mouth again.  It was successful, until one of the wires dislodged and went directly into the back of my brain causing damage to the cerebellum and spinal chord.  At least I can open my mouth now, and have continued in my singing aspirations.  I have since written a very special song to thank Dr. Verma for his grand role in influencing my dreams...the lyrics are as such:

Dr. Verma do I concern you?
are you worried now?
Not about my condition
but how you will get out

Dr. Verma I’m gonna warn ya
you can’t circumvent
when my bones were turned to stone
you got sealed into the cement

There will be chaos on the charts
You‘ll cross them out, take them apart
you fuse their skulls, and break their hearts

I bet you wished that I forgot
and thought my thoughts would die and rot
The spine is stable- THE MIND IS NOT

Dr. Verma I’m gonna turn ya
into an honest man
Successfully did alchemy
made gold from titanium

Dr. Verma ready to learn now
what you really do?
you’re a salesman in a surgeon suit
a debonair devil in blue

For little girls will all succumb
to pearly teeth and silver tongues
and when you’re done
they won’t be young

They’ll awake in a world of fear and hate
where they can fornicate with fate
where they will scream
inside their dreams

Dr. Verma I’m gonna hurt ya
here with every note
that come out like a viral plight
I’m coughing out my throat

Dr. Verma I’m gonna burn ya
with fire in my soul
and cauterize you’re pretty lies
and make you pay for what you stole

For all the little girls you screw
will eventually come for you
and when they do
you’ll be screwed too

Wake in my world of fear and hate
where you’ll be raped by your own fate
and in my dreams
I’ll hear your screams

And in your dreams
you’ll hear me scream:
YOU MADE A MONSTER OUT OF ME!
YOU MADE A WOMAN OUT OF ME!

Blogarythm

Today I start my verbal dysentery of truth.  My name is Anomie Fatale, not really. but it is who I've become after the onset of a mysterious neurological condition, and the failed experimental surgeries that have been done since to treat and to understand it.  I was twenty years old when I was Kelianne Murray.  I was twenty years old when she died. She was a 4.0 biochemistry college student, with an aspirational interest in the field of medical research.  She dropped out and became medical research instead.

The Cast of Symptoms (in order of appearance)
Palinopsia- the persistance of visions/afterimages
Visual Vertigo- the visual warping of space
Vertigo- the sensation of that warping
(Basically/Enigmatically ALL of my perseptual reality is warping as if underwater)
Visual Disturbances/Distractions/Amusements:  Visual snow with intermittent zigzag light shows, rainbow nebulas, scintillating scotomas,  flashing lights, wave pools of light that are seen best when the eyes are closed.
Headquaking (chronic and constant)
Noodleness of limbs
Dizziness: intermittent vestibular carousel and spinning tea-cup-machine rides.
Blood pressure irregularities: Dysautonomia: Syncope (Fainting)
Post traumatic Stress
Cynicalism

The Diagnosis: Ehlers-Danlos Syndrome, causing spontaneous intracranial hypotension, causing Arnold Chiari Malformation.  There is a complication of the hydrodynamics of the cerebral spinal fluid around my brainstem resulting in abnormal pressure levels on certain nerves and tissues...causing them to malfunction.  I have undergone surgical experiments that have only had minimal success in treating some symptoms, and have made some much worse.  My brain has been cauterized, the back of my skull has been removed without a prosthetic replacement, and my head is fused solid in place on top of my spine with titanium like a bionic mannequin.

I am medicated with music, I am a singer-songwriter with a band named "Great Neck" , after the place where these surgeries have all been performed.  I fully commend, advocate, and admire the surgeons of The Chiari Institute, who are looked upon by stagnant western medicine as modern-Mengeles due to the questionable morality of their anatomical curiosities and invasive methods of their experimentations.   But all knowledge is a destination arrived at from of a journey of mistakes.  Through error as an answer to the question.  And if i can keep one head from breaking, then I shall not live in vain.

www.myspace.com/greatneckband
Facebook: Great Neck Band

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