Sunday, 10 June 2012

• I Have Asperger's Syndrome

  
  
  Blogging apparently helps my fiance feel better whenever she's feeling the need to vent or talk about something, so I figure I'll give it a shot, and maybe it will help me feel better.   

  Let's start at the beginning, shall we? I have Asperger's Syndrome, a form of high functioning autism. I have times where I get so overwhelmed by the thoughts of being out in public that I just don't leave. There was a time where I didn't leave the house for about a year. A whole year. Spent in my bedroom. Because of anxieties and fears of being out in public, around other people. Seeing all the lights and sounds of everyone and everything around me. Yes, I've gotten a little better at being out and amongst people and such, but at times, it becomes really difficult. Cortney has been a real help in that department. She's pushed me so far out of my comfort zone, that I've had to adapt to new things and feelings and surroundings. But I do all this because I love her. She is so amazing in this regards. She pushes me when I need to be pushed, and holds me when I just need to be held. But, she is not the reason of this post, and before this post completely digresses into an "I love Cortney she is the most amazing woman ever" post, I shall continue to the main point of this blog post. 

  I was diagnosed with Asperger's Syndrome in 2002, just 3 months shy of my 18th birthday. Shortly after my parents found out what was "wrong" with me for all my life, they started learning up on it. We found out that Asperger's and other Autism spectrum disorders were covered as a disability under Social Security. Which was a huge relief, because my sole work experience up to that point, was a terrible failed attempt at working at a Bob Evans' restaurant bussing tables when I was 16, in which the noises, smells, feeling of the food and water I had to put my hands into to grab the cloth for wiping down tables made me sob and not leave my room. I'd hide in my room or on the couch and make up excuses not to go to work. And not even call my managers. I worked three weeks. I was turning 18 in three months at that point. I had dropped out of high school because of the anxiety and stress of being there. And my parents were fretting over what I, and by extension them, would do about me once I turned 18. I had no prospects of gainful employment. No desire to leave the house to go to get a degree at college. I felt safe in my room, and that was where I was going to stay. After I turned 18, they applied, with me, for Social Security Disability Income. Because of my Asperger's, it was approved, and they breathed a sigh of relief. At least if I was going to be staying in my room for my whole life, there'd be a way for some income to come in to help pay for things like food and clothing for me. Things seemed to be better for them, I felt "happy." Or at least safe and secure in my room. I was in and out of college after that. In the fall of 2002, I tried to go back to high school, but I felt so awkward and out of place there, that I stopped going. I had to only go for 3 months, and I couldn't do that. I dropped out for the second time. But instead, this time, I got my GED. Armed with a GED, my parents forced me to at least take classes at the local community college.

  I didn't really want to be out in public, at all, but I did. Partly because I wanted to be a college graduate and not be a burden, but it was mostly to alleviate the fighting and pushing from my mother. I enrolled in the fall of 2003 at Sinclair Community College in Dayton. I decided to major in computer programming, since I had somewhat enjoyed it in high school. However, it did not hold my interest enough to overcome my anxieties and fears about being out in public. Though it was good in that it forced me to finally get my drivers' license. I had been driving with a temporary permit since I was 15, but had never taken the test. I took the test at 19 and got my full drivers' license because dad was unable to drive me to school and back every day. At the end of my first year at Sinclair, I visited a career fair and found out that nobody hired programmers with less than a bachelor's degree, and since I was going to be graduating with only an associate's degree, I decided to transfer to Wright State University. I was going to transfer to Wright State in the fall of 2004.

  It was arranged that I was going to move into the dorms at Wright State. This was going to be a huge step for me. And my mother was ecstatic. And then my appendix burst. We didn't know that at the time, but I was sick for a week. Finally, my mom said that if I was really as sick as I was acting, she'd come home and take me to the hospital. But I'd have to shower, which for me, is another one of my problems. The feeling of water on my skin just bugs the hell out of me. It literally makes my skin crawl. Not only was I feeling sick, and not wanting to be out of bed in the first place, but I had to shower as well. But I was feeling so sick that not only did I get out of bed, and shower, I went to a hospital. I get there, and the doctors told my mom that if I hadn't gotten there when I did, I probably would have died that night. I went into the hospital August 15, 2004, and got out the first week of November. I have no memories from August 15th until the middle of October. Whatsoever. I don't know if it's side effects of being so heavily sedated because of the pain and illness, but they weren't sure if I was going to live or die until about October. I went back to school at Wright State in January of 2005. In March of 2005, I had an interview with two doctors for Social Security, whose only job, I've come to realize, is to make sure that Social Security doesn't have to pay money. The first one was a doctor who examined my physical abilities, and since I wasn't there for a physical disability, I understand why I got a glowing review from him. The second, was a psychiatrist, who was there to examine my psychiatric problems. I went to his office. I spent 15 minutes with him. He was sitting behind a desk, about 10 feet away from me. Asking a whole slew of questions. I can't even remember all of them. Had me look at ink blots, and then I left. I don't get to see what he wrote or anything.

  I get a letter from Social Security 2 months later. They've determined that I am no longer disabled. That I've magically been cured of my incurable autism spectrum disorder. And that they're no longer going to pay money. I'm baffled, but on the back of the letter, they said that if I felt this was in error, I could appeal the decision. So my mother and I did. We were told that it would go to folks in Columbus, and they'd get back to us. So a year goes by. They're continuing to pay while the appeal is in process. After this time, I've dropped out of college after going through several changes in majors, failing English three times, not being able to advance in my scholastic endeavors, because of anxieties and fears and generally being unable to comprehend and understand what is being asked of me, especially in the vague English classes. We get a letter from Social Security in 2006. Appeal denied. 

  Again, I'm devastated, confused, angry. What the hell are they smoking at the Social Security Administration? We appeal it for the third and final time. This time it has to go to a Magistrate and his ruling will be binding. Fast forward to the magistrate. We finally get to look at the "evidence" that Social Security was basing their decisions on. I see their psychiatrist's file on me. No wonder they denied me. Not only was their psychiatrist so inept that he repeatedly failed to spell my disorder correctly. Not even a typo. It was spelled "Assburgers." But he had also somehow said that I liked to "garden" and could do other things outside of the house. Except for the fact that, I don't know, going outside terrifies me 90% of the time, even to go out into our own YARD. But apparently, I love gardening, and do that all the time. We go into the Magistrate's chambers for the hearing. It's clear from the beginning, that even though I'm not even together enough to stop crying and rocking in my chair, that he's already made up his mind that I'm not going to come out of this hearing in any sort of good position. They never explained to me, or my mother, that if she was there as my representative, that she cannot testify about my daily life. Which leaves me there, crying, incoherent, unable to answer a question except with a yes or no. They start rattling off all the jobs that I'd be qualified for. Folding clothes at a retail store. Unloading boxes off trucks. Call center jobs. Other menial work. Not that there's anything wrong with those jobs. But my mom asked the magistrate and the social worker or whatever her job was, how they expected me to get those jobs if I couldn't leave the house or interview at all for those jobs. The magistrate told her that that fact wasn't any of his concern. What the fuck dude? If I can't interview to get those jobs, or leave the house to perform those because of the anxieties of working, how am I supposed to do those jobs? So from 2006 until now. I have been getting the Social Security pay. Now the decision is completely final. I will not be getting a check on Friday like I was expecting. Instead, they want me to pay the $28k that I've gotten over the past four years back to the government. Where they expect me to come up with that, I don't know. Mom says not to worry about it. And I'm not worried about that. What I'm worried about is what this is going to do to me and Cortney.

  Cortney goes to school 2.5 hours away from me in Columbus. It's hard enough as it is only seeing her on the weekends. I know she loves me. And I know this is a terrible thought, and stupid, but I can't help but feel it. I'm not going to miss the $600 a month that I've been getting. Honestly, it's not the money that I'm going to miss. It's the ability to see Cortney. Now I don't know how I'm going to afford the gas money to see her. I hate that I'm 26 years old and am having to rely on my parents again. I'm scared that with me not being there as often as I can, she's going to find out I'm a loser and a failure, and that she deserves infinitely better. I'm worried that she's going to find someone better at Otterbein, and forget about me, and that I'm going to be alone again. I'm. Completely. Terrified. 

  I love her with all my heart, and I'm terrified that she's going to realize what a failure of a man she is with, and leave me. It's hard enough at times having Asperger's and smiling and laughing off my idiosyncrasies that everyone finds funny or cute. I just want to be normal. I really do. I'm weird as fuck, and not at all intentionally, but I just laugh it off and pretend like what I do is intentional when it's not. I know people aren't laughing at me to be hurtful, but there are times when it really does hurt, and I just laugh it off. There are days when I just want to hide in my room and never come out ever again, but I'm pushing through, cause now that Cortney is in my life, I can see a future outside of the little 10'x10' room of mine. And I'm pushing so hard just to get better, and now I feel like I've been punched in the gut. I feel like all of that is slipping away. And I'm scared. I don't know what I'm going to do. It's just so hard at times, and now that things are finally going well in my life, and I truly am happy, and not just feeling safe and secure in my room, to have this thrown in my face again. It hurts me so much, and I'm terrified. 

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