A month ago my life was seemingly stable. Despite my symptoms I could manage in my
power chair, take short walks and do physical therapy, with enough life left in
me to perform in my band and commit to my studies for college at Temple for
Media and Business. I’m not sure what happened, but I know when it happened. My
band had performed a set at The Smokin Gun revue. It was a burlesque showcase featuring the
talents of women dancing the art of feminine seduction. It differs from stripping because that dance
form is designed by the male audience, where as burlesque is designed by the
female performers. Submitting vs. Controlling, Expression vs. Exploitation. I’d
always wanted to be a dancer, and having a medical condition, I’m no stranger
to having to get nude in front of people.
My favorite part of Burlesque is the costumes; many are handmade and
personally designed. So much hard work
is put into something people just want to see taken off and thrown to the
floor. We finished our set with “Dr.
Verma.”, and being it a burlesque night, I let Jesse take of my top underneath
of which I had our band stickers on as pasties.
There’s no better billboard than the female body. If companies really wanted to make profit,
they should pay swimsuit models to get tattoos of their logos. I wiggled a
little in my walker, not enough to cause a fall or strain though. The night ended, and I went home to my
apartment to rest. I woke up to another
fire, they’ve been happening every two weeks or so here because PHA is too poor
to afford security cameras to identify the arsons. A while back I took up Buddhism and
meditation to train myself mentally to stay calm and not pass out while having
to exert myself in evacuation. Although
I was mentally in the right place, physically I was not. I took a wrong step somewhere and I think
something shifted in my back. Even
though I made it out safe, nothing has been the same since.
The first thing was headaches and extreme fatigue. I slept for almost three days straight, and
couldn’t sit up without the feeling that all the blood was out of my head and had
severe pounding. I went to the hospital at
UPenn with a blood pressure of 65/30, and stayed there for a week till it went
up to at least 85/40. I had blood work
and head to toe MRI’s that were all read to be fine, so I was released with
them telling me it was just a strain and would get better. Even with rest and drastically reduced
activity, my issues seemed to worsen. It
became very difficult to move my arms, one day I could not move them at all and
had to have a friend work my power chair buttons to get around Market Street.
I’ve had the weakness in my legs since the tethered cord surgery, but arms as
well makes it hard and dangerous to do just about anything. I have attendant care coming in to help me
with everyday tasks, but they cannot help me with the mental fog and lack of
concentration and energy I am currently feeling. Just writing this blog is almost wiping me
out, and I’m supposed to be reading 30-60 pages a day and writing papers for
classes. The pain is agonizing, but I
can’t take meds for it because then I cannot access my mind at all. I had to cancel two upcoming gigs for Great
Neck because of this, one of which was Disability Pride New Jersey, an event
that meant a lot to me as well as many people I care about. I had to stay back and not join my friends in
the ADAPT National’s trip, a civil protest in Washington DC for disability
rights. I had even bought a bondage
outfit costume to wear while we all handcuffed ourselves to the capitol fence.
I wanted to paint on myself “Disability: The Ultimate Bondage experience.” I learned a woman’s car had crashed into that
fence after a police chase ended up in open fire shooting at the exact spot
hours after my friends had been removed and detained for fighting for our
rights. I wish I could say I was there
that day.
The only event I did not cancel was one that I had agreed to
be a part of “Carnivolution”, a traveling burlesque sideshow event that I was
feeling crazy enough to need to go to. My
friend Erik, who goes by the performance name of “Velvet Crayon” asked if I
could play a part in a storyline he’d written for the show. Erik has osteogenisis imperfect; he is the
perfect tiny monster wheeling around in a koala mask with an electric
guitar. In his story he was the
President who needed the help of his five ex wives to save the son of David
Bowie from Satan in a tutu. I was to
play the first lady wife who commanded the army of cripples in a concentration
camp, a place that teaches them to literally concentrate. I sang a musical duet number with him,
something he’d written that we had never practiced before the show except
briefly in his van together as he drove me there. Being my ride made him 15 minutes late, but
he did not seem to mind.
When I got to the venue I was helped in by Jelly boy the
clown. The stage was outdoors, but there
was an indoor house like area with couches and pot smoking. I saw one of my heroes Bunny Savage there. I told him before I named my kitten after
him, he was flattered, and relieved when I told him I wasn’t going to press for
child support. He looked different
tonight then when I’d seen him around at the other shows in Philadelphia. He told me and the others in the room that
he’d lost a good friend, and on top of that his bassist suddenly died. No one ever really knows what to say in those
situations, but after which he mentioned that he hadn’t slept in days and the
girl next to him responded
“O I know what you mean, that happens to me all the time.”
I wanted to say that too, but not about the sleep. Just about the life being a cold hard bitch
and leaving with anything you really care about. I didn’t want to mention that there’s
something very medically going wrong with me and maybe I’m going to drop dead
tonight. But I thought that too, cause
I’m a dreamer like that. Regardless of
what was gong on in my central nervous fuck the system, I was going to do
Burlesque. I talked it over with one of
the dancers, Miss Rose, who does costuming and burlesque shows around the
city. She was playing the part of one of
Satan’s maids, but for my song she was my “helper.” We discussed the different positions she
could help me in in my walker, and the dramatic ways we were going to go about
removing my clothes, such as her putting my hand to my mouth so I could bite
down on my gloves to remove them. The
song I was performing to was one that Erik helped me choose. It was “Old Fashioned Morphine”; the perfect
fit for my scene.
The acts went by quick and delightfully traumatic. Helios the fire twirler, Titano the strong
man, and Miss Molotov the acrobatic pregnant clown. People carrying men on their backs walking on
glass, human suspension from their flesh, snorting insanity peppers on women’s
stomachs, power drills up the nose. I was not freaked out; I was freaked in. Each act I imagined what it would feel like,
to be on fire, to roll in glass. In no
way could it cover the headaches and spinal nerve pain I am always
feeling. I wondered if it could cut it
away. Then I saw a guy performing with
Ehlers Danlos Syndrome, the condition that caused me all this splendor. He showed the audience the same flexible
poses I used to freak out my friends with (not as much now because the fusion
rods limit much of my supermobility powers), and dislocated his hands for their
amusement. I got to speak to him
afterwards, his fingers swollen, his smiling through the pain. He told me he was supposed to be in a
wheelchair at age 6, but has been able to work through the pain just by being
psychotic. I wonder if I had not gotten
the Chiari and Tethered Cord aspects of the syndrome if I would be doing the
same. They cause me to be in a
wheelchair most of the time now, so I do not experience the joint and body pain
most EDSers do. But I also do not
experience the life.
Although I was having a hard time keeping my body up in the
upright position, I felt for the first time totally stressless. Even though it
hurt to do anything or everything, here it was accepted to be tortured, to feel
fucked, to exist and accept how I really feel.
I find pleasure in the dark, sometimes the happiest thoughts in my head
are
“Don’t worry, you’ll die someday.”
Just so I can go on with this living.
Everyone wants me to be positive. Those who love me, those who look up to me,
my friends and all those who help me, the Buddhists and the good people in the
city. I feel judged a lot, and like a
lot is expected of me. I can not not be
relied on, I am not in charge. I’m not
driving this life, I’m just surviving. I
get 50-100 messages a day online that I do have the eye power to read almost
any of, young people with disabilities wanting advice or creepy old men wanting
a creepy new friendship. I have no
problem getting naked onstage for a theatrical performance of self sexpression,
but I have a problem with getting naked in front of a man just for money.
I felt healed in a way last night. When Miss Rose danced around with my floppy
ragdoll limbs, I felt more control of self than I’ve had in a long time. I would have been a dancer. I am still a singer. I can do all the things I would have, whether
I’m really here or not. If it hurts to
move, move more. The more it hurts, the
less you’ll even notice. Erik had a
fluke happen in his sideshow act of electrocuting a pickle which caused him to
get unintentionally electrocuted himself.
He could have died, but instead he was just paralyzed from the neck
down, in massive pain and unable to push his wheelchair. The guy with EDS put his swollen re-located
fingers on his shoulder and told him he needed to just take it. I was concerned for his life; he was
concerned that he now couldn’t give me a ride home. Miss Rose and another dancer took me home instead.
My life has become a sideshow, it makes sense that this is
the only place I feel like I fit. I
don’t fit in with the shells of society, that’s why I picked the name “Anomie”
in the first place. I find myself almost tearing up in class sometimes, when
the professor talks about making a place in the professional world and
preparing for life careers. The reality
is no one will hire someone with my level of disability, and even if they did I
would likely not be able to perform a job with any efficiency. I will be stuck in the Munchausen help of
Social Security for the rest of my life as my condition is progressing. If it were just my body I’d have a chance,
look at Steven Hawking, he is more able to live and discover than most able
bodied people. But it’s my mind too, the
cloudiness of thought, the fog, it’s becoming hard to remember things, and I
can only concentrate when I have not moved at all, otherwise the vertigo sets
in and the world spins too much to even think.
I’ve seen many neurologists about this, they are useless, only giving
medications that are CNS depressants that knock me out completely and make me
sleep all the time and mess with my blood pressure even more. Here in the sideshow, the less you think, the
better. Also mobility was not an issue,
I got to be carried around by Titano throughout the night. No one is shy to
suffering, or uncomfortable by the realities of pain, in fact, it is the
amusement.
It was a religious experience for me. Jesus was a woman with a fake beard stripping
down to a holy trinity thong with three hot dog dicks, and hell was the exit
out the end of the night. After I got
home I heard the devil, that voice in my head saying to me
“Ok you’ve had your fun time, now go back to school and help
the world become a better place.”
I really got to get my non-profit organization started.
