Angels in the Ghetto

I gave my consent to live in my apartment in the projects without ever actually seeing the apartment unit.  The Philadelphia housing authority has a waiting list that can take up to years to get one.  It is the only way to for someone who is independent and on SSI to have a place to live that they can afford; many disabled individuals are stuck waiting with their families before the chance becomes available to them.  Pulling strings through the independent living center I participated in youth groups for, I was able to get pushed through the system to an availability.  It was in the ghetto, but it was a place that I could get in and out of myself in a power wheelchair; way more freedom than I’d had in years. A chance to work, to go back to school, to live my own life again the way I really wanted to. Calling the shots and in control.  No more being trapped in others people’s lives. No more self-suppression or psychotic caretakers. 

My father told me I was crazy. 

“Don’t be calling home when you want anything…we’re not coming there.  You’re gonna hear screams at night…and gun shots…and you’re gonna be sorry.”

He was a probation officer for folks in Camden.  40 years on the force had traumatized him.

My parents have not been closely involved in my life since the age of 7.  It was ideal…until I became disabled.  Most people I meet have the complaint that their parents shelter them and don’t let them do anything on their own.  I guess that I’m lucky.  My parents do not want me live with them, not because they do not love me, but because they know they can’t meet any of my physical or emotional needs.  They have trouble enough keeping their own lives together, and a two story house with a ton of steps.  They are old and disabled as well, but they support me however they can.  My dad built me a special shower chair using the legs off an old walker that was the perfect height for a standing transfer in my new bathroom.  Because I can’t afford it myself, he pays for my monthly life-alert services so I can feel safe when I go out.  My mother is always the first person I call when I’m stressed out and need to get my head back on strait (pun intended).  She was worried about me moving to the projects too, but still drove me out to make the housing deposit.

The building attendant told us

“You can have a cat.  No Dogs.  Utilities are included in the monthly bill; it’s 20% of your income.  The handicapped units are floors 1-6. In case of a fire, go out on the porch and the fire trucks will come and rescue you.  These are the papers, sign here.”  My apartment was on the 6^th floor, I was happy to be the highest up, because it was the farthest from stray bullets. 

I hear gunshots every night.  My friend says that when you hear them in a row it’s a good sign because no one is fighting, it’s just people marking their territory.  I’m not afraid of the people around here.  Everyone is very polite and helpful.  When there’s a group of people in the lobby usually 2 or 3 of them will all go to hold the doors open when they see me come out of the elevator.  There isn’t a single time I leave without a “Have a good day” or “God Bless you Honey.”  It’s made me really hate white people though (I’m one out of about three in this building.) When I go out into center city I have to ask at least a few folks for help until someone even notices me.  They stand still on the corners chatting with their cluster of friends, while the pushy people going places butthole around them, and the polite people in wheelchairs wait behind as they block the curb cuts. 

I like being independent, but I don’t like living alone.  I’m still in the process of setting up with attendant care, but I’m also in the grey area of what I can get approved for.  I can feed and dress myself fine. I can manage my needs, but only dangerously.  I am a fall risk from the vertigo and blackout occasionally from the POTS.  I have my life-alert, and my therapy cat.  Sunday night I brought Schrodinger over to the new apartment to stay with me.  It was his first night in a new place, and I wanted to make the change as easy for him as possible.  With cans of tuna and cuddles he was settling in just nicely.  I fell asleep with him beside me after setting my alarm clock for work the next morning.  Yes, I am finally in a place where I can work a job.  It has taken four years, but I am becoming a real person again.  The position I now have is as a Youth Transition Coordinator, basically someone who helps others with disabilities get through all the things I am going though now.   

We woke up to the fire alarm.  It was 3am.  I knew it wasn’t a drill; they had been running drills for months, but never at 3am.  The alarm and flashing lights frightened Schrodie; he leapt up and hid under the bed.  I was on the 6^th floor, if this was a real fire, then waiting to be rescued out on the balcony would have been waiting to burn up.  Acting fast I stumbled out into the hallway.  Two of my neighbors, a man and a woman, were on their way over to the stairwell.  I was panicking; my voice was loud but shaky

“Please could you help me get my cat, please.”

They were gold hearted, and the man came to help.  He followed me back into my apartment and tried to get Schrodie.  Schrodie backed up even further under the bed and clung in place, it took many attempts and moving the bed across the room to finally grab him.  He stiffened even more in the man's arms, as we raced out the door.  I almost fell over before I got to the doorway. I can walk but my balance is poor and limbs are weak from the Chiari.  I needed a cane or I wasn’t going to even make it to the stairwell, but there was no time to go back and grab mine.  Luckily there was an extra I kept close to the door entrance.  I never use it; I just keep it there for decoration and sentimental reasons.  I bought it for Jesse’s grandmother “Me-mom” for Christmas so she could have a decorative cheetah print cane (to match the one I had that she liked so much) so we could take walks together after she got out of the rehab center.  She passed away a few days later.  As I was going out the door with it, I thanked her in a quiet voice.

As we opened the door and made it into the hallway, I thought we were going into the fire itself.  The whole area had completely turned to thick black smoke, it was hot and there was little room to breath.  I could hear screaming everywhere.  I thought of my father’s words.  This was the first time in my building I had heard screams.  We ran to the stairwell, I wasn’t running, but running as in as fast as you can physically go.  I was running.  The man was walking and waiting for me.  With Schrodie in one arm he helped me down step for step with the other, making sure I didn’t fall as I wobbled and people were running down around us.  With every group that came down at least one person stayed at a side of me making sure I was balanced and steady.  I had a whole team at all sides of me…I was flying down the stairs…all six flights.  I could feel my heart rate machine-gunning in my throat, my vision was darkening, and the pressure in my head felt like my skull was going to burst. I was not the only disabled person on the steps, I saw my neighbor who has artificial legs go by, as well as wheelchairs being carried down because the elevators are shut off in the event of an emergency.  At the bottom the man carrying Schrodie had to go find his sister, so he gently placed him into my arms.  Anything more than 3lbs affect my symptoms, Schrodie weighs over three times that amount.  Mustering all the strength and adrenaline in me, I held him close to my chest and carried him out of the building.  I made it over to the railing outside, and leaning into it almost passed out.  A young girl of about 14 saw me, and came over to help, helping lift Schrodie out of my arms and getting me safely and seated.  EMTs were called, and the firefighters went by as the few gentleman who I always see hanging out in the lobby helped me into the community center room where it had been cleared safe to go.  One of them who helped me down into a chair looked me in the eye

“Don’t worry, I got you.  Just know that, I got you girl.”

These were the people of the projects that my family and friends were so worried for me from being around.

He put Schrodie onto my lap and stayed with me till the EMT’s arrived.  My vitals had stabilized by then.  It hurt like hell, but I was all right.  Everyone was so impressed at how calm and collected Schrodie was.  Despite all the chaos, He sat on my lap loving as always, as a few young kids came over to pet him.  I’ve wanted for a long time to get him a therapy animal license.  After concluding that I was stable, and that the fire had been successfully put out, the EMT’s helped Schrodie and me back up into my apartment.  I came back to a bedroom of residual lingering smoke…I do not have the strength to open windows.  I laid in bed and waited three hours for my alarm to go off for work. 

Though I felt like a bomb had gone off in my body, the last thing I wanted to do was to acknowledge it.  Just wanted to keep swimming.  Unfortunately when I left the apartment I was greeting by an elevator repairman,

“Sorry there was water and fire damage from last night, elevators are closed today”. 

I went back in my apartment and checked the news.  The report said it was a mild fire, no causalities, and only one person who had to be evaluated by EMTs.  Second time I’ve made the news this year.  The fire had started on the 17^th floor, but had spread through the trash chute.  The chute on my floor has a broken handle and is always open, that’s why the smoke had been so strong.  Aching in physical agony and thankful for life, I spent the morning in my room writing a song.

They told you not to run

Because you won’t be any fun

They said you gotta go

To the balcony show

But you really get the feeling

That there’s smoke above the ceiling

And you gotta get down somehow

Angels in the Ghetto

Flames grown in the meadow

Angles in the Ghetto

Bring me down

Bring me down

Bring me down

Tonight

Cast out from the box

We are locked inside domino blocks

And they push for us to fall

Out of this world

But we won’t go without a fight

With out doing what we know is right

Get the cat under the bed

Get all the chairs down the stairs

Angels in the Ghetto

Flames grown in the meadow

Angles in the Ghetto

Bring me down

Bring me down

Bring me down

Tonight

They wont tell you

All the danger

Do not come from the strangers

But from the words they say

When you follow their way

The heroes aren’t in blue

The system don’t want to save you

But the angels in pain

Will rescue a demon in distress

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.