It's never too early for a Halloween party!

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