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:)