Public Introspection, I’m sorry I have abandoned you for so
long. I’ve had many things to tell
about, so many that I haven’t had the time to write them down. I don’t know where I left off…well…I left off
in a Walmart checkout isle with a vitamin water and a few cans of black
spraypaint. But that’s another story.
I got a new haircut.
I haven’t gone to a hair salon in over four years, since the
decompression surgery in 2009. Up until now, I’ve let my brain surgeons also
function as my barbers. For each surgery
they’ve only needed to shave the back part of my scalp, so I’ve kept each
time’s length as layers, like dendrochronological datings, using rings of a
tree to show time. Because the back of my skull is missing, I’m afraid to have
that area shampooed by anyone, including myself. When I massage it too rough in the shower, my
pupil’s dialate and I become dizzy. Also with the titanium fusion hardware
keeping my head in place, it’s impossible to lean back into the salon
sinks. I called the lady beforehand and
warned her in question form
“Have you ever worked with someone without the back of their
skull and their head fused in place?”
She said no, but that she liked a challenge.
It took three women at Micheal Anthony’s Salon in BellMawr
NJ to shampoo my hair. One to hold my
head sideways above the sink, another to do the actual shampooing, and a third
to hold a plastic tarp to keep the water from spraying everywhere at the angle
they needed to have the faucet to reach my head. It was even more difficult for them, because
I hadn’t brushed my lobsided tina-turner birdsnest in over a month. I’d just been released from Moss rehab
center, and before that the hospital at North Shore. Unfortunately life-sustaining processes like hair
maintenance just don’t get enough attention when you’re hyperfocused on tedious
bullshit like reclaiming the use of your arms or legs and being able to urinate
regularly. I wanted my new dew to be a
cross of Uma Thermin in Pulp fiction, Catherine Zeta Jones in Chicago, Bettie Page,
Bettie Boop, and Bettie Rubble. Short, black, easy to
maintain, and still conformable with my non-conformist arty brainshape.
I got a new spinal cord cut.
I wish there was a magazine I could have picked the style out, I would
have pointed to the photo of the girl doing parkour dives off a Mountain Dew
truck, and said “That one.” One of the
effects of my Ehlers Danlos Syndrome is a condition known as “Occult tethered
cord”. I always write it as “Tethered
Chord”, cause I’m a musician and we hate the correct spelling of
akneething. All of the connective
tissues in the body of someone with EDS are defective, including those of and
around the spinal cord. While those in
the joints are hypermobile, and bubblegummed, the ones of the spinal cord are
like gum after its been soaked in ice to get it out of your hair, tight and
totally unmaliable. That extra tightness
creates pulling and tension on the brainstem, causing stretching of the nerves
and all sorts of neurological chaos as an individual is moving, especially when
bending and lifting the legs. I did not
know I had this problem, and neither did my MRI. It wasn’t until kicking around in the pool
during aqua-therapy caused my legs to go numb and my bladder to release that I
knew something was weird.
I had the surgery to release my captive spinal chord with my
barbers in in Great Neck. The surgery
went well, by making a minor incision on the muscles around my chord, Dr.
Bolognese was able to get my elongated brainstem to spring up two full
inches. But when I came home to begin
the healing process, I entered hell the moment I hit the floor; I fell on my
way to the bathroom in the middle of the night.
A laminectomy had been performed on my bottom lumbar vertebrae to access
the area, leaving me unstable and succeptable for banana peel moments. The MRI
afterward showed a tear at the surgical site, and a pocket of spinal fluid that
had leaked out going up six vertebrates.
I could not move my arms or legs, and my head pounded like a God f*cking
Gaia mother Goddess of all God f*ckers.
I was admitted to Moss Rehab Center, where I regained motion but not
strength in my limbs. I was released two
weeks later in a manual wheelchair I can not push myself on carpets or on
inclines, so to this very now I am trapped to the spot like Dr. Scott Medusa-ed
in the end of Rocky Horror. In any
carpeted room such as the bedroom I am typing this in, I can’t help but
thinking
“My vheels! My God I
can’t move my vheels!!!”
And because of a 1
inch wooden floor lip, I’m unable to access the bathroom without help.
The doctors at Moss refused to send me home with an electric
powerchair, because I was able to move a few feet on flat tile floors. They also notified the DMV, telling them that
I was no longer suitable to drive, so I had my license revoked. This was a huge casualty, not only did I have
to surrender the lisence, but I had to get a new photo taken for an identification
card, being very fond of the old one, Niecey Entity/Neon blood-Telsa will be
missed. I had applied to and been accepted at Temple University, for their neuroscience program with a scholarship and financial aid from Vocational Rehabilitation. Because of this medical setback I was forced to decline my admission, and lost funding services because OVR has concluded that I am no longer "fit for employment". I was also unable to return to the apartment I’d been living in in
North Philadelphia, for I was no longer able to get up the stairs without major
amounts of gorilla assistance. So now I
am living back at my boyfriend’s mothers house in BellMawr NJ, and
coincidentally back with my boyfriend.
Me and Jesse had broken up for a while because we didn’t know how to
deal with my disability, or if he even could.
I believe that tragedy tests us, we don’t know what we WOULD do, only
what we’re doing, and maybe what we should and shouldn’t have done. Maybe I shouldn’t have left him because he
wanted a family and a normal life, and maybe he shouldn’t have let me move away
to Philly when I was angry and frustrated that he was ignoring my disability
and life challenges. His words that
finally sent me off were
“If I didn’t believe that you’d someday get better, I’d
never have let myself fall for you in the first place.”
He’s always reminded me of Beast from Beauty and the Beast;
angry all the time, and he eats with his hands.
I’ve noticed that he looks at me very differently after all this messness. Yes, I’m in a wheelchair right now, so he
does have to look down, but it’s not a look of pity or regret or guilt or
surprise. It’s a look of love, and full,
honest attention. I look back up at him
and think
“There’s something there that wasn’t there before.”
And I know there is.
Because we now do stuff together. Not just the easy stuff
like organizing a major music project or wild whimsical adventures to Virgina
for hairless guinea pigs for our breeding service, and seminal desecration of
foam recreations of world wonders, and surprise hornets’ nests. But the hard stuff. Like grocery shopping.
And because his words that brought me back were
“We’re gonna make the best of this. No matter what.”
We’re getting our band Great Neck back together, and will be
doing shows again as soon as November. I
can’t stand right now, but standing’s not necessary to rock and roll (and to
make stupid pun jokes). Music will heal
me, so long as I stay out of the moshpits.
Look forward to everything (and not just because my heads
fixed that way…ooh I’m getting good at this cornish pun-villainy.)
<3 The 4 dimensional personification of Bettie Rubble.
And o hey- we have hairless guinea pig babies for sale now!
www.guineapunks.com
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