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.

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!!!!!!