My life is a Halloween party. Dressing up in costumes, celebrating the
morbid and the macabre. It’s no wonder
that Halloween is my favorite season, it’s the only time the world around me
matches the cobwebs and skeletons in my mind.
I can’t eat candy anymore, I’m reactive hypoglycemic now. The problem started last Halloween, after a
bucket of lemon heads and gummy worms.
Initially I felt crackheaded high…like I had free-based on rock
candy. But a few hours later, my brain
and body fell into a zombied fog….I couldn’t experience a feeling of being
“awake” or “alert” for days afterward. I
could barely get out of bed. My pancreas
was overacting to the sugar intake….and putting out way too much insulin
lowering my sugar levels, even though the source of the spike had stopped. My system was so out of whack, that even eating
something like an apple would cause flushing sugar-high feelings, followed by a
worsening slugstruck drowsiness. Fortunately with time, and slowly absorbed
foods like nuts and hummus, I was able to set my system back straight. I’m not
sure if it’s from the Chiari Malformation, but the pancreas is regulated by a
place in the brain that I have damaged, so yeah, I believe it’s all related.
The support group I’m in for young adults with disabilities
at Liberty Resources in Philadelphia was having a Halloween party. The party was scheduled from 12-2. Jesse had work from 10 to 4. I have not been to group since early July,
before my tethered cord medical mess began.
Because I missed seeing my friends there more than I value practicality
and self-safety, I opted to have him drive me over there at 9:30, and just wait
in the lobby of the Liberty Building till it was time for the party, and the
staff would open up the meeting room for our group. The lobby there is entirely carpeted floors,
and with this medusa-menacing manual chair, I am unable to maneuver around on
them on my own. So until noon I sat
parked in place, making sure I sipped my coffee slowly so that I wouldn’t need
to urinate. It was a Halloween party, so
I figured costumes were to be worn. I
tried to draw as little attention to myself as possible while stuck on public
display there in the main lobby in a wonder woman costume with a doctor’s lab
coat and slippers made to look like two lion heads were chewing my feet
off. If anyone asked me what I was, I’d
simply respond,
“I’m bad ass.”
One gentlemen passing by in a walker smiled at me.
“People with imagination and creativity like you are so
blessed and wonderful, they have the ability to reach for the stars.”
I then made him laugh by touching the stars on my wonder
woman skirt. He asked me what my disability was,
“Well, it’s pretty hard to walk when my feet are being eaten
off by lions.”
I got another good laugh out of him.
There was a man in a seat across from me who I’m not certain
what was wrong with him, but I think he was either severly brain damaged or
schizophrenic. He was talking to
himself, but he was making references about things around the room. He looked at my coffee, then started shouting
at the empty space in front of him
“In some places coffee comes in a cup
In some places coffee is dark
I know; I hear,
In some places coffee comes in a cup”
He was short and small, with grey wiry hair, and a Cockatiel
voice. He reminded me of the mad hatter
from Alice and Wonderland, but without the hat.
I did not try to talk to him, but a part of me really wanted to try.
I was then surrounded by a group of Christian street
preachers. They were originally Muslims
who had reformed, because they could not believe that God would work through
hate. I did not tell them about my
scientific agnosticism, I just smiled and thanked them for conveying Jesus’s omni-eternal
love for me, and prayed in my head to just be able to roll away.
The first person who arrived from my group was Tina. She was dressed as Miss Muffet, but an evil
seductive version, that I tokened “Madame Muffet.” We concluded that we were
both the villainess versions of our female costume characters, and joined
forces to take over the world…or at least the group meeting room we entered
together. Tina’s mom always goes way out
for the group, she made homemade cupcakes with ginger bread knives sticking
into them. Even though I couldn’t eat
them, I still enjoyed attacking everyone with gingerbread knives, and my friend
Trevor enjoyed eating my murder weapon.
At first I thought Trevor didn’t bring a costume, but he assured me that
he was Barack O’Bama, and I couldn’t argue with that. You don’t argue with a
smooth talking black man. I think that Trevor
should be President of the United Stated instead.
Noralis showed up with her new boyfriend. Noralis has had many guys that have given me
many reasons to fear for her safety. The
first one she told me about was twice her age of 18, and proposing to marry
her/take her out of the country, after a week of them meeting…on an internet
dating site. Because of that dating
site, she’d had four different phone number changes just in the year I’ve known
her. She’s young, pretty, Puerto Rican, and
terribly in danger of being taken advantage of by the scumbaggery of the
webworld. I was apprehensive at first
when she told me about this new one, Jose, but after meeting him, I not only
saw more in him that any of her others, but I saw more in her as a maturing
female whose finally making better decisions for herself. She’ll always be the little sister of our
group, but it’s good to know she’s being looked out for now by a guy she’s
with, instead of harassed and endangered.
We put on a movie that no one watched; we were too engaged
in conversation. I hadn’t seen them in
eons, so it was like lost puppies finally reunited with each other. Trevor told me that his ex girlfriend, who
used to be part of the support group, but randomly vanished and stopped answering
her phone turned up out of the abyss when he ran/rolled into her at the Mall. No one had seen or heard from her in a year, we
we’re all extremely worried, especially Trevor, who she had never even said
goodbye to. We thought maybe her
sociopathic/abusive mother was keeping her captive in the house, and we’re even
trying to get the authorities involved.
As it turns out, this was not the case. She had just begun dating another
man, and didn’t know how to break it off with Trevor. She did what she thought
was right, and cut all connections from him and everyone they ever knew
together. This new beau was an able bodied
guy from Trinidad, who she now claims is taking care of her, and is going to
take her back to Trinidad with him and have her adopt his children. I
understand how hard it must be for two people in powerchairs with extremely
limited mobility to sustain a relationship together, and I understand the
extreme lengths one with such a severe disability would go to for freedom from
a hostile household. But if you’re going to end a relationship with someone who
fully loves you like a soulmate, then don’t do it without so much as a word to
them. She still has my sympathy, but has
lost much of my respect.
I know there will be a girl out there for Trevor, but just
like my friend Steve who has Duchenne’s Muscular Dystrophy, it’s so much harder
for guys to find girlfriends accepting of their disability than it is for disabled
girls to find boyfriends. This is not
only because of the intimate limitations, but also the social role of the man
to be dominant, protective, etc. Steve
and Trevor are some of the strongest, most badass guys I know, but I think they
require super strong women to match them.
There are many issues that people with disabilities are
facing that we try to touch base upon in group.
But since we are young adults, most of our conversations DO revolve
around relationships, romance, and intimacy, you know, the things NORMAL people
our age would talk about. We just have
very unique perspectives on it because we come from abnormal
circumstances. I’m lucky to have a
boyfriend who’s okay with having to make sure I don’t go paralyzed or lose
consciousness every time that we’re intimate together. I got Jesse to deliver the pizza for our
party, and it was great to see him early.
It was not great to find out later he gotten a ticket for parking
outside the building to come in and bring the pizza to us. He now has a hearing set up to fight it, but
the system is saying that even though he’s driving a service vehicle, he should
have not come in, and had us come out to the street to pick it up. In his defense, we’re all CRIPPLED! We would
not have been able to pick it up! He
went out of his way to come in for ten minutes, cut the pizza up and serve it to
people who don’t have control over their hands. Yes, definite criminal
activity.
When our party-time had run out, I wasn’t sure what to
do. I had foreseen two and a half more
hours of sitting in carpet limbo.
Fortunately Trevor and Noralis had plans on going to the mall down the
street, and since their nursing aids were with them, there were people to push
me. I learned a new word from Noralis’s
aid Amber, “Snife”. The meaning of which I am still not exactly certain, but
it’s something you really do not want to be.
I’d never been to the Gallery, which I now prefer to call “The
underground mall”, because “Gallery” misleads me into thinking it is somewhere
that displays art. Upon entry to the conglomerate dungeon, I realized how
really out of place I was. All of the
mall-folk were staring at me, not because I was in a wheelchair, but because I
was still dressed as Dr. Wonderwoman with lions eating her feet off.
One teenage waste-can who wouldn’t budge, stopping at the
sight of me, shouted
“WOAH- HOLY SHIT!”
I smiled and contorted back in his unnecessary volume level
“YEA, CRIPPLED CHICKS CELEBRATE HALLOWEEN TOO!”
Then I gave Amber permission to plow my chair through him.
I deemed humanity redeemable after the fortunate finding of
a similar sense of awesome. There was a guy in the mall who let me take a photo
of his arm in a sling he had punked out with studs and band patches. I wished I had one to give him for Great
Neck.
We made it to the food court where I unintentionally
dissected Taco Bell tacos with hardshells into a napkin of nachos. I watched Jose help Noralis consume her
mashed potatoes, one awwdorable spoonful at a time. I’m glad she has a good one. We had somehow lost Trevor for a while upon
entering the mall, but I was reunited with him in the demarcation of the Taco
Bell line.
“So you’ll never guess what.”
I decided to prove him wrong.
“What?”
Ha! And you thought
I’d never do that!
“I just saw my Ex again.
She’s outside selling things. She
looks homeless.”
“Do you want to invite her to come in and sit with us?”
I keep no foul eggs against people.
“Not really, she’s in a manual chair right now, and she
can’t push it herself.”
Hmmm…that situation
sounds familiar.
“She said she was waiting for her boyfriend to come pick her
up.”
I felt sorry for asking.
“Oooo….never mind then.”
“Yeah- and then she asked if I could pay her phone bill for
her.”
“So she can continue to not call you?.”
That bitch was snife.
It was cathartic and recharging for me to get out and into
the city. I can imagine a life where I have powermobility, and access to
transit, where I can be with my friends whenever, and we can go wherever is
accessible to us, which isn’t much, but its more that the few rooms of the
house I have now. Noralis and Trevor are
both in college, and I wish to join them someday…working on a degree…and having
a real life despite a major disability.
It will happen eventually, but until then I have the support to get me
through. Philadelphia, you will be mine
somedayJ