Saturday, April 13, 2013

Acceptance: the truest form of strength.


It’s nights like last night that make me realize how far I’ve come with accepting the symptoms with a neurological condition.  I woke up at four am with the majority of my vision gone replaced by squiggling zigzag colored lines, flashing lights, and fizzling dot images.  I also had nausea, head pounding, and heart palpitations.

The disturbances rarely take over this much of my field of vision. A few years ago when they got this bad I would run around freaking out trying to shut my eyes only to see them brighter.   I can’t run anymore, so that’s a plus, but even if I could it does not affect me like it used to.  I got up and went to my computer and did online math problems through the little circle of reality I had left.    It’s all about doing what you can, and not worrying about what you cannot control.  If I felt the symptoms were posing a critical threat, I have phone numbers I can call and a life alert system.  My vision has returned to its normal levels of semi-psychedelic now.  My head is still womping, but it’s a duller pulse of pain that I am very used to by now.  I recognize it as the ouch-ouch heartbeat in my head.  If I did not feel it, I would think there was something wrong.

I’m not sure if I’m strong or just desensitized.  I think it’s neither, I think it’s just acceptance.  Everyone has agony.  Yours is unique, but not special.  The moment you focus into it is the moment you lose sight of everything.  Keep to the little circles, and remember those you love.

Monday, April 8, 2013

Never give up. Never try.


After four years of not physically being able to work at all, I thought my dream had come true when I found part time employment at a center for independent living for people with disabilities.  Here was an environment where it was not only okay to be disabled and have limitations, but it was respected.  My job was to be a “Youth Initiative Coordinator Assistant”, a fancy title for a position that meant helping kids get through college despite their disabilities.  I certainly had not been able to up until now.  I felt like I was dong my part, and finally integrating into the real world.

I got my own desk and a name tag.  I could not legally use “Anomie Fatale”, so when I was not among staff I would turn the tag around so I didn’t have to see the name on it.  It felt like wearing a dead persons underwear.  I got to go around to schools and give presentations on leadership and advocacy.  I told the kids my real name now, and the story of how it became that way. Anomie is a term in nihilism for one cut away from society, but recently I was feeling more connected to the world than ever. 

I got a letter in the mail from social security.  I am on SSI recieveing benefits of 710$ a month.  I had followed protocol and told them that I would be working part time and gave them a list of hours and income.  I knew that for every two dollars someone makes, that one dollar is reduced out of their SSI payments.  I did not know that “dollars you make” did not actually mean dollars made, it meant dollars you earned before taxes.  My income was around 1,000 a month, but in actuality was 760.  Nevertheless, 500 was taken out of my SSI payments. Because I’m on subsidized housing my rent was increased, and part time work had a dramatic negative effect on my food stamps, and the payment of OVR for my college in the fall.  I was being punished for trying.  Barely breaking even, losing all financial assistance and aid, and exerting my body with a chronic illness when I could have stayed home in bed and not been hurting, this was the reward for hard work and will to succeed. 

If I leave my job now, I will have to live on SSI payment of only 200$ a month for two months until my benefits are reset to the original 710.  The woman I met with told me it’s based on a two month system after the individual has ceased work as I broke down crying in her office.  This is not enough to cover any of my living expenses, if I did not have help from my family I would become homeless and starve. If I stay at my job, I might not be able to have college paid for by OVR in the fall, and whenever my job does stop, it will be the same story of 200$ a month and destitute poverty.

We are in a society where submission and sloth are celebrated.  Disabled people that can work part time can’t really because then they’ll be impoverished and totally screwed. This will change someday, and I will not stop working until it does.  I might have to leave this job, but there will be another someday for me, in a better system and a more just world.  Until then I do not mind being an Anomie, cause seriously, fuck you America. Fuck you fuck you fuck you!!!!!!

Tuesday, March 19, 2013

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 6th 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 6th 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 17th 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

Friday, October 26, 2012

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:)