Anyway, hopefully this is just the first of many and it’s picked up by more news outlets:

That, for the most part, they were not incompetent dehumanized assholes. But rather good people trying to do the best they could to serve their country. Today I learned otherwise.

I got word today that I lost my case against MediCAL. The state has decided that I don’t need 24 hour nursing. That, despite being dependent on a ventilator and eating through a tube in my stomach, I only need 12 hours of nursing a day and it’s up to my family to take care of me the rest of the time. If I don’t like this arrangement, I can choose to go in a nursing home. Which, by the way, is terribly understaffed and underfunded.

I was always told that America was the land of the free. Everyone had a chance to make something of themselves. My family moved here because there was better healthcare and more opportunities for the disabled. But today, that is longer the case.

See, they don’t expect people in my situation to do anything with their lives. They’re gonna give you just enough help for you to exist, but not really enough to live. They don’t really expect you to want to make something of your life. They want you live a, hopefully for them, short life and hurry up and die because you’re taking money from the system. They don’t really care about helping you out if the numbers don’t look good.

I don’t know how it got like this. The intentions were good, certainly. But somewhere along the way, the government went from an entity by the people for the people into a large faceless blob of paper pushing bureaucrats completely disconnected from the very people it’s supposed to serve.

I don’t know how I’m gonna do it, or even where to start, but I will fight with every ounce of my being, every drop of blood and every bead of sweat to get the care not only that I need, but thousands of others in my position need. I will fight for thousands of others that can’t fight for themselves and I will show them just what I’m capable of.

I will not stop.

I will not give up.

And I will not let them get away with this.

Check back tomorrow for a new story.

All my life I’ve always managed to find flaws in other people, in whole groups. They’re too dumb, too annoying, too boring, too douchey, always too something. It doesn’t matter that they’re not my friends because I’m too good for them anyway. Did you hear that joke that guy just told? Everyone is laughing … it was a stupid joke, they’re stupid. But they don’t know I’m there. At least that’s how most of them act. And I understand they’re not trying to be malicious, they probably feel as awkward as I do. But I’d be lying if there isn’t some part of me that resents all of them for making me feel so left out. Obviously it’s not their fault. It’s not like everyone got together and decided to ostracize me. It’s just people’s fear of the unknown and, the way I figure it, there’s only one way to fix it.

There’s two kinds of… differents: The special and the “special”. The special people that drop out of Harvard and create billion dollar websites. And the people that are somehow handicapped, either mentally or physically. The difference between the two groups is that one is admired while the other is pitied. However, they’re not mutually exclusive.

That’s what I’ve been working towards all my life. To be someone that people look up to. Not because I’ve “overcome adversity” or some bullshit like that, everyone does that at some point in their life. But because my accomplishments are remarkable even without the added obstacles. And then, maybe then, people won’t be afraid to come up to me and say, “Hi” Maybe then they’ll include me in their group. And maybe then I won’t feel like such a lonely freak.

I remember back in middle school, before the ventilator and feeding tube, me and my friends would walk home from school everyday. It was a short walk, a little more than 15 minutes. We would joke and make fun of fun each other and say words our parents would never let us say. There used to be a mailbox that was put right in the middle of the sidewalk. In order for me to get past it, I had to get dangerously close to the edge. One of my friends would always have to stand next to me to make sure I didn’t drive off the sidewalk. Nevertheless, it was always the highlight of my day; Because, for that brief period of time, I actually felt like a normal kid.

One day, I got annoyed with my friends because they were taking too long. So I, being the cautious individual that I am, decided to walk home by myself. It seemed like a good idea at the time and, for about 15 minutes, it was. I felt empowered and independent. I was alone for the first time in my life, and it made feel more normal than ever. And then I saw it, the mailbox. It stood there in the middle of the sidewalk, taunting me. I knew I could make it through, but there was also a chance that I’d end up face first on the pavement with no around to help. So I had a choice: Go back to my friends or challenge the mailbox. It wasn’t a hard choice in my mind, I was never one to let obstacles stand in my way. I took a deep breath, clenched my joystick and pressed forward. I imagined myself lying on the street, helpless, with cars whizzing by my head. I was afraid, but the thought of running back to my friends scared me more. I got dangerously close to the edge, but managed to make it through. I smiled triumphantly and made it home safely.

I’ve always wanted to be like everyone else. Or at least to be as successful. I’ve fought all my life to be as independent as possible and to have a chance at a normal life. It hasn’t been easy. There’s always been mailboxes in front of me, but I’ve prided myself on meeting and tackling them with everything I have. I want to be independent, but I need 24 hour care in order for me to do that. I don’t want to rely on my parents for the rest of my life. I don’t want to be forced into a nursing home because that’s where people go to die and, with all due respect your honor, I’ve only begun living. Please your honor, give me the chance to be successful and I promise you that you won’t be disappointed.

If any of you know anyone that might be able to help me get this story out there, I’d appreciate it if you linked them to this and have them email me.

P.S. I know this isn’t the post you guys want. I’m still working on it.

I mean, obviously you can’t ever tell the future with certainty. But, up until now, I’ve always had somewhat of an idea. I always knew that I’d wake up in my room. Maybe I’d go to school or do something like go to the beach, but that’s about as exciting as it got for me. Now, I’m gonna be waking up in a completely foreign place, surrounded by thousands of foreign people my age. I’ll be forced to get over my lack of social skills pretty quickly. Which, I mean, isn’t a bad thing; Just extremely scary. I can’t count the number of times some stranger has approached me and I froze and/or blushed from embarrassment. I think it’s the fact that I’m so self conscious about my voice and how I sound. It’s kind of a very nasally Mickey Mouse and takes a little while to understand Hell, my own mother has trouble understanding me a lot of the time. People often have to translate for me when I’m talking to new people, it makes for very awkward first encounters. I’ve spent my whole life avoiding those encounters, and now I’ll be having them pretty much every day. It’s terrifying.

This whole thing is terrifying, and not just because of the social aspect. So many things have to go right. I have to hope that I get competent nurses that won’t kill me, hope that mediCAL won’t take away about $100,000 worth of coverage when I turn 21 (Yeah, apparently I turn 21 and need less nursing hours. If anyone knows of a good lawyer for this kinda thing please email me.) and I have to hope that I get all the right doctors.

It’s all so uncertain, I’m not used to that. It all used to be so easy and predictable and safe. I had a routine. I went to school in the morning, came home and took a nap, fucked around on the internet and then did homework until bed. I knew all the nurses and they knew me, but most importantly, I knew that I could count on them in an emergency situation. I won’t have that when I get there. Not at first anyway.

I’m gonna have to build another life over there with new friends, routines and memories. I know people do this all the time, start new lives in completely different environments, but no one ever said it’d be this scary. I guess that’s how life is, I’ve just been so sheltered all my life that I’ve never really experienced it. Obviously my circumstances are a tad different for me, but the funny thing is that I’m feeling many of the same emotions my normal peers are feeling, they’re just a little… amplified.

I have to go now. It’s 10 pm and I still have to do some stuff before bed. Next time I post it’ll be from my dorm room. Catch you guys on the other side.

Now, what follows next is very gross. If you’re eating, recently ate or have a weak stomach you should not look at these pictures. They’re of my gnarly infected toenail that they had to remove. If, like me, you have a morbid curiosity about gross things then scroll down. If not, you’ve been warned.

Without further ado, welcome to Toejam 2010:

This is before the surgery.

I call it Bob

Right after they injected it with anesthesia

Doctor working on it.

The part of the nail they took out.

And this is five days later.

I have a feeling it’s not supposed to look like that. This probably isn’t over.

We have posted admission decisions on our website. You can view our decision at [url].

Sincerely,

UCLA Admissions

That email made my heart race. I was suddenly scared to know. I’d been aiming for UCLA ever since I started community college.. I figured it was the right mix of challenging and fun. It was also just far enough from home that I could stand on my own. Now that the day was finally here, all I could think was, “That’s how they let you know? One of the defining moments in my life and they don’t have the decency to tell me in the email?” I stared at the log in button wondering what was on the other side. Even if they rejected me, I still had four other acceptance letters from four decent schools. But none of them represented what UCLA. If I got in, it would prove to myself that I could accomplish anything I wanted to. And I wanted to live in the dorms at UCLA. There’d be people my own age that I’d be forced to interact with. And yeah, it’d be like that at all the other colleges, but there was something about that school that drew me in. Whenever someone would ask me what my plans were I’d say UCLA. And they’d always get this look. Like they thought I was aiming too high or something. Getting in would prove all the doubters wrong. And now all I had to do was click a button.

Click

All I saw was a banner that said congratulations. I didn’t feel happiness as much as a sense of huge relief. The only way I can explain it is that feeling you get when you pee after you’ve been holding it for three hours. You no longer have to worry about pissing your pants anymore and you can finally relax. I didn’t cry or squeal or anything of the sort, I just relaxed. Then I told my parents. My mom screamed and jumped, my dad tousled my hair and told me I did a good job. My mom told everyone she knew.

It never really sank in for me, though. It still hasn’t in a way. I don’t think it really will until I’m completely moved out. I still don’t completely believe it myself. I’ve lived here all my life, this house is all I’ve really known. Living somewhere else, on my own, doesn’t even register in my mind. I haven’t even slept over at a friends house since I was 12. The only time I’ve slept anywhere else has been one or two weeks vacations every year, all of them with my family. And I’m really really scared, but I have to do it.

My family has been supportive the whole time. I always told them what my plan was and, while they always expressed skepticism, it was always implied that they would support me financially. I even remember a time I expressed concern at how I was gonna pay for all the costs to my dad. He responded by telling me not to worry because he had some money saved up for my education. It was a pleasant surprise, since I expected to be buried in debt. I think his exact words where “Don’t worry about the money, I’ve got that covered.” I operated under that assumption for the rest of the time in community college.

About a week after I accepted UCLA’s offer, I got a call from my dad.

“We need to talk.” he said.

“Uh… okay. What’s up?”

“I’ll talk to you this weekend.”

“But what about?”

“You can’t go to UCLA. I got to go, talk to you later.”

I just shrugged it off. It wasn’t really his choice and I would ease any fears he had. But I forgot how impossible it is to get through to him. He didn’t really talk to me as much as he lectured me.

“If you stay here and go to UCSD I’ll buy you a car and help you pay for everything. We’ll get you nurses and you can live in the dorms. But it’s not fair to us if you go to UCLA. We would have to drive there all the time to train nurses.”

“I’m not asking you to and I don’t expect you to.”

“But we want to. We’re not gonna leave you there to die. What happens if there’s an emergency and you go to the hospital? We can’t leave your brother to go to the hospital with you.”

“Then don’t.”

“We’re not just gonna leave you there in the hospital. We take care of our own. How many times has a dumb nurse almost killed you there? We can’t leave you. That’s why you have to stay at UCSD. If you go to UCLA, don’t expect any help from me. No money, no car. If you need help in any way, don’t count on me for it.”

I didn’t push the issue any further at that point. There wasn’t gonna be a nurse that day and I needed to keep things civil. But I was baffled by his contradiction. He doesn’t want to leave me, but he’ll cut me off if I don’t do what he wants? It does not compute. The worse part is that he sealed the deal right there. If I was gonna stay it had to be because I wanted to. Not because I wanted to appease my parents or was strong armed into it. I’d resent my parents for it and hate myself for taking the easy way out.

So I sat down with both of them later that week. I explained my reasons and said that my choice was made.

“I don’t agree with it.” said my dad, “I’m not supporting it in any form.”

“Okay.” I said with tears in my eyes. And that was that. My mom said she’d do what she could, but my dad is the one with the money. All those times he told me I had his unconditional support, bullshit. Intellectually, I knew there’s no such thing as unconditional anything, really. But I never thought my parents would ever have a good reason to and I certainly never thought either of my parents would do it. Any last bit of hero worship I had for him died at that moment. The times when he held me up and dragged me around the living room playing soccer with my brother. Going on all those dangerous roller coasters he took me on. Taking me to game 4 of the 1998 world series on my birthday and getting an autographed Greg Vaughn baseball. All those memories I have of him were completely overshadowed by him basically disowning me. It didn’t matter how many times he told me he still loved me, I wanted to jump him.

All my life I’d seen him as dad. Dad is superhuman. And despite any problems we had with each other, there was still a part of me that saw him that way. That went away when he acted the way he did. Revoking his support when he knew I needed the most was the opposite of what a parent would do.

I cried and listened to sad music the whole day. I thought about how the hell I was gonna pay for all the student loans. If I didn’t need nurses and medicine and medical equipment and I could do manual labor between semesters and… if there wasn’t so many ifs. It didn’t matter, I’d told myself that I was gonna do everything I could to get to UCLA.

So I proceeded on under the assumption that I wouldn’t have his help in anyway. I kind of emotionally checked out of the relationship even though he said he still loved me. I talked to him normal like I always do, but just to keep the peace. He wouldn’t sign my FAFSA or any document that would help me financially. So I started to get in touch with the financial aid department to explain my situation. I called about five times in two weeks, but never was able to get ahold of anyone.

Fees started piling up. Housing, orientation, ID card. I took it out of my bank account. I would have to come up with $4,000 by October, and that was after I payed a $400 housing deposit. I mentioned the piling expenses to my mom.

“Ask your dad to pay for it.” She said, nonchalantly. I wondered if she remembered the situation.

“But… he won’t.” I said, confused.

“Have you asked him?”

“Well, no, but he kinda said…”

“Send him an email and tell that you heard that he changed his mind.” I was puzzled, had she talked him into it? Apparently she had. I sent him an email asking him if he had changed his mind. He never responded to the email. I asked him about it and he said he never got it. I was too proud and too afraid of what he would say to ask him in person. And I think he was too proud to say he changed his mind. But when I asked him if he could fill out a form he said okay. I don’t know what my mom told him or how she did it. Maybe he realized that his threats weren’t going to stop me.

It’s kind of hard to check back in to the relationship. What he did and how he acted really cut me deep. I was never naïve enough to think that everyone who said they believed in me did, but I thought to that if anyone did, it’d be my parents. What he did felt like a huge betrayal and it’s going to take some time for me to get over it. If I felt like I could talk to him I would. But he’s so hard headed that it’s nearly impossible to have a rational conversation with him. For now, I have to keep the peace. Any snarky remark he makes, I have to hold my tongue. If he does something I don’t like, I have to let it slide. It’s not exactly a healthy relationship, but it’s how it has to be right now. Maybe, if I play the game well enough, I’ll get where I need to go.