Why the hell do I always have to act positive?

This morning I just need to let the rain out of my head.  I feel so trapped, and unhappy.  I can’t handle living like this much longer, this is not living.  This is waiting, crushed under a broken system, to be rescued by a blow to the skull so hard I’ll never have to wake up in this f*cked world again.

Here’s what I WOULD do if I could just get out of the house today:

1.     Get my best friend a birthday present.  Unfortunately I have absolutely no money left it my bank account from SSI. I had to put my groceries back at ShopRite.  I should be getting food stamps so that cost doesn’t keep taking up all my income, but I’m currently still listed as “dependent” to my parents, who I cannot live with because they have an inaccessible house. Hahaha.  At least it keeps me safe on their insurance policy, because without that NONE of my surgeries or medical expenses would have been covered on just the SSI Medicaid alone.

2.     Breath Air

3.     See some other human being/ have a real conversation.

4.     Exist

Here’s what I will be doing today instead

1.     Going through more free trials of screen reader programs that don’t work well, but that I require to view the computer that is all I have to stare at for twelve or so hours. 

2.     Wishing I had groceries and human contact

3.     Raining from my eyeballs

4.     Trying to still exist

F*ck it. I’m taking Valium and I’m sleeping the rest of the day.  Perhaps I can go grocery shopping in my dreams:)

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

Flying horses can't fall.

I did something really stupid last night.  I was sitting in the kitchen in my wheelchair listening to Patti Smith “Horses”, and started to feel funny.  I would have been listening to it in my bed room, but I can only be in there for a few hours during the day because I’m allergic to the guinea pig’s hay. Currently with the living situation Jesse and I have, we have no where else to put them.  I don’t want to deprive them of nutrients, or the digestive benefits of hay, so for now I’m taking allergy meds and staying out of the room as much as possible with an air purifier on.  I also have no where to put my stuff, other than clothes, most of my things are being stored in the basement where handicapped, I do not have access to them.  Jesse had work from four to midnight last night, so during that time I thought I’d try to get some work of my own done.  Without the website up, there’s not much I can do for Sick and Sexy yet, and without the funding, there’s even less.  I don’t feel like a failure, but I feel like am failing everyone in our group.   I created this project to help us all handle the destruction of life we’re going through. But I’m disorganized, broke, financially, and physically, and sometimes I just don’t feel like enough of a person left to pull this off.  I don’t need to be able to walk, but I need to be able to get transported to places on my own schedule, connections, and funding.  I’m just stuck in place right now.  I trying not to dwell on how still my life is running, but sometimes the moment moves me.  And I get possessed by horses,

horses, horses…

And I find myself sprinting across the kitchen floor full speed holding hard onto my walker and dear pseudolife without the ability to feel my legs or lift them.  The world whirls and burning eels swim up my back. It’s hurts so much to feel free.  I collapse onto the seat, and relax as my heart palpitates violently.  I have a cup of coffee and some soy sauce packets so I don’t pass out.  Then I go to bed singing an old song I know in Spanish:

“Un mejor dia vendra.”

…A better day will come.

Dinosaurs and Vampires.

Yesterday was the first time I was able to make it over to my best friends house to hangout since the summer.  Because of my new mobility issues, there are very few friends I can visit easily.  For those that have steps entering their house, I require lifting and assistance, and for those who have carpets, I require pushing. Fortunately, Panda’s house is completely accessible.  But unfortunately it’s because she has muscular dystrophy and is also in a wheelchair.

It’s difficult for us to spend quality time alone together.  Both being disabled, if something falls on the floor…and is too heavy to pick up with our grabbers, we just call it “the vortex”, and pretend it doesn’t exist anymore. It dangerous for us to try to get around without the chairs, because if either falls, we can’t catch or help the other back up.  I remember one time watching her fall down while walking down a ramp.  We were leaving a bar that we’d shooting our on mini-documentary about DUI charged given to intoxicated people in power-chairs. Since we had my boyfriend Jesse and her guy friend from Shoprite there with us to assist, we had gone in without walkers or wheelchairs.  Jesse was helping me down into the parking lot, but her friend had taken off with a girl he’d just met at the bar and was trying to pick up.  The ramp didn’t look that steep, so she figured she could manage it on her own.  At the bottom of the ramp I turned around just in time to see her red licorice rope figure flop.  She tumbled; she flew back, and her head cracked hard against a metal railing.  I was within running reach of her.  But I couldn’t run, nor could I reach.  If only I could have caught her with the wrenching motion of my heart. I just lowered myself on the rail and sat on the ground beside her and tried to smile and look brave.  I didn’t know if she was seriously injured, it looked like it could have been serious.  Her smiling back did not reassure me; she could still smile even if she was shot in the back.  I asked her questions to test for a concussion; thankfully she was all right.  I then did all I could for her; I found her friend, and I screamed at him until he understood that if my hands had the strength he would have been strangled.

Panda and I never watch movies together.  It isn’t because we don’t like movies, we just like our time to be spent doing things; not observing them. We can talk marathons.  I never run out of things to say, because even on old subjects, we’re constantly having different perspectives and opinions. That is the definition of aging; and I am proud to be growing “old” with her.  Our conditions themselves are not fatal, but they are progressive. We’ll be there for each other at every level.  She’s one of the only people I can visit when I’m dizzy and in too much pain to stand, because I don’t feel weird spending the entire time laying in bed next to her talk-traveling our way around the world.

Yesterday we talked a lot about tomorrows.  Where we want to go; how we’re gonna get there.  She has a great girlfriend now, who not so coincidentally is one of my closest friends from highschool. She finally approves of Jesse, because he’s finally showing his understanding of my disability, and responsibilities as the man in my life.  At my room in Moss rehab Center, she came in to visit me while he was there too.  It turned into a sit down “couples counseling”, where the counselor did most of the talking.  Panda told him right there that if he’s going to live with me there’s things he needs to understand and be patient with.  She was referring to my emotions more than my physical needs.  Panda knows that that’s the support that counts most, and since she can’t be around me 24/7, that there needs to be someone else who can handle the job too.  I call her “Panda”, because I drunkenly discovered way back in our college days how well that rhymed with Amanda.