No Post

Posted August 11, 2011 by hotwheelzrc
Categories: Uncategorized

No post this week. Check back next Thursday.

Pick Up Chicks

Posted August 4, 2011 by hotwheelzrc
Categories: Uncategorized

Being disabled has it’s advantages: good parking spaces, free drinks at bars, having people do everything for you,. But it also has drawbacks and the most bothersome are not always obvious. For example, it’s gotten harder to talk as time has gone on. My voice has gotten softer, some letters are harder to enunciate… just little things that make it harder to communicate.

What bothers me most about this is how much it messes with my game. Do you have any idea how hard it is to flirt with girls that can’t hear or understand you? I hate it when I have the perfect line for a girl and I can’t quite deliver it.

Like this one time when I was downtown walking back to the car. There was this incredibly cute girl walking with two friends. Normally I wouldn’t know what to say, but I had the perfect in with this girl. She was wearing a walking boot and noticeably limping. I had the perfect line for her. I’d drive up to her side and say, “Hey sweetheart, need a ride?”” It was perfect. I could see myself delivering it perfectly and slowly rolling away in victory with her phone number in hand. I’d be Mr. PimpWheelz.

But that didn’t happen. It didn’t happen because I couldn’t talk loud enough and I couldn’t catch up to her. It makes me wonder how often I might have talked to or befriended someone but couldn’t. How much easier it would be if I could just talk to people and they could understand me without needing someone to translate everything I say. How the hell am I supposed to tell a girl that she should get on my lap and ride me like a crippled Sea Biscuit? People get all uppity about it, “Oh I’m not gonna say that!”. That’s the thing about it: I could get away with some ridiculous shit with girls. The waste of potential makes me angry.

I’m okay with not walking, not breathing and needing to wear fucking Depends. I’m not okay with having to struggle to communicate with people. Why can’t I have this one tiny fucking thing? It’s just the hand I was dealt, I guess. Still, I wish it wasn’t. I wish that one day, I’ll see a cute girl in public and she’ll be reading something like Slaughterhouse Five all by herself. Then I’ll go up to her and I’ll say, “Hi” and she’ll understand everything I say. Maybe she’ll like me or maybe she won’t. It won’t matter. It won’t matter because, for that second, I’ll be normal.

UCLA Part 8 — The End

Posted July 28, 2011 by hotwheelzrc
Categories: Stories

The agency never did find someone to work that one weekend shift, so Corie worked it. She wasn’t happy about it, but she had volunteered. Everything went fine that night, we thought. But apparently not because the last time we heard from her was Monday morning when she called to say she was gonna be late because her car broke down. She never showed up again and, to this day, we have no idea what happened to her.

Since Amber was flying home that day. we had to ask my mom to come up the night before my last final This didn’t help my case at all. “See? You need me. This is why you need to move back!” I just bit my tongue. We decided to drive home after my final. As we drove away I couldn’t shake this fear that I wouldn’t come back.

I knew it was going to be a tough month. Everyone was going to pressure me to stay home and I needed stay focused.


There was a lot of tension in the house and we would fight a lot. UCLA was always in the back of our minds and it hung over every conversation we had. I decided to talk to my mom to try to clear the air

“Okay mom, I need to know how much you can help me. Not how much you’re want to help me, because I know you want to help me with everything, but how much you can help me.”

She took a big sigh and composed herself, “Nothing, I can’t help you anymore. I can’t keep driving up there every time a nurse calls in or Amber needs a break. I just can’t do it anymore.”

“Okay.” Obviously that was going to make it harder, but that’s the answer I expected.

“I’m sorry, but I just can’t. Your brother needs me too. He’s in so much pain and he’s in such a bad place. The doctors don’t know what’s wrong and he’s just given up. The other day I laid with him crying because he told he can’t go on anymore, he wants to die. And you know what? I want to die with him. Every night I lay down and ask God to just kill me. I pray for a heart attack just so I can have peace.”

I didn’t say anything because… what the hell do you say that? I looked at her with pity and disgust. How dare she be so weak? I’d through hell for three months and was willing to go back and SHE was the one that wanted to die? And my brother… what the fuck is wrong with him. We have the same god forsaken disease and he wants to kill himself because of a little pain? I was risking my life trying to go after what I want and he’s sitting at home wallowing in self pity? It made me want to puke.They were both so weak, I had to help them.

I knew what I had to do and I hated them for it. I hated myself for not resisting. For feeling like I needed to come in and be fucking Superman. Maybe deep down I did want to stay. Maybe I was the one being weak. I’ve tried to answer that question for the past few months. Maybe I just used that as an excuse. I honestly don’t know anymore. All I know is that I failed myself.

I told her a few days later. She was so happy, she hugged and kissed me and said thank you. She told the family over Christmas dinner and they clapped and cheered. They all told me that I made right decision. Everyone was happy. Everyone except me.

Post Script:

I had to tell Amber. She understood , but was freaked out. I made sure she had time to find a place to live and enough money until she found a job. There wasn’t a grand good bye, I didn’t want one. I wanted to forget everything about UCLA, it hurt too much. But I couldn’t. I thought about it every day… I still do. It pops up in news articles, TV shows… I can’t escape it.

Sometimes I go to sleep at night thinking about it and I start to cry. I have dreams where I’m back there and I feel so happy. Everything is going right, I have friends and girls like me. Then I wake up in my room, sad and disappointed.

I don’t really have a good relationship with my mom. She tries to talk to me, but I don’t want to. I can hardly look her in the eye when she tells me she loves me. She wants to say it back, but I can’t. I don’t think I do. She says she feels like she doesn’t have a son anymore and I think she’s right. Her son died in December when she asked him to sacrifice his ambitions for the family. All that’s left is a broken and disillusioned soul.

I don’t think I’ll be able to forgive them until I find a way to forgive with myself. The only way that’ll happen is if I go back and finish what I started. I guess I’m back to square one.

UCLA Part 7 — Decision

Posted July 21, 2011 by hotwheelzrc
Categories: Stories

 Dear son, you have no idea how proud we are of you. We know that you’ve worked hard to get where you are. But sometimes we have to accept our limitations, I know that’s never easy for you. There’s no shame in moving back home. If you move back, we can help you. What if you lose your court case and they cut your hours? We can’t keep driving up there, especially with the condition your brother is in. He’s is in so much pain since his surgery. He’s depressed, he doesn’t do anything. The stress of you being there, the court case and him being this way is too much. Please think about coming home. It would be easier for all of us.

Love,
Mom

I showed Amber the email, “What are you gonna do?” She said.

“I don’t know. I have to think about it.”

“Should I look for another job?”

“I think so, just in case.”

I didn’t know anymore. Was I being selfish? At what point do I sacrifice everything I’ve wanted for someone else? It didn’t seem fair. I knew that if I did go home I would resent them forever. I’d hate them forever. I’d hate them for guilt tripping me and not being in my corner. But I knew that if something happened to my brother I’d never forgive myself for not trying to help. I was torn. I knew what the right decision was, but I didn’t know if I could deal with the consequences I thought about it day and night. I withdrew from everything and lived inside my head.

“Raul, have you decided yet? Because I need to know if I’m gonna have a place to live when I come back from Chicago.”


“Yeah, I have”

Dear Mom and Dad, I’ve given this a lot of thought. I want you to know it wasn’t an easy decision and you won’t understand it. But I have to stay at UCLA. It’s just something I have to do. I’ll try my best to make everything easier on everyone. I’ll hire a second person with my financial aid so you won’t have to come up anymore. I’ll do everything I can to stay here.

UCLA Part 6 — The Agency

Posted July 14, 2011 by hotwheelzrc
Categories: Stories

The day after we had confronted Kumba about sleeping, I got a call from the director of the agency, Michelle. I think I had just gotten out from some kind of midterm and was exhausted.

Hey, Michelle.” I said wearily, a call from the office was never good. It was almost always because a nurse wasn’t coming or that a nurse was quitting. At that point, we had gone through about 13 nurses., so they knew me well.

Hey Raul, how are you? I heard that you fired Kumba last night.”

No, that’s not what happened. What happened was that we confronted her about sleeping and she didn’t like it. She asked me if I wanted her to leave and I said no, but she just kept asking over and over.

It was pretty clear she didn’t want to be there, so I finally said, okay fine. She put us in a really awkward position and it just wasn’t fair.”

Well, I’m sorry you had to go through that.”

I’m just wondering, what kind of repercussions are there for the nurses that fall asleep?” There was silence on the other end, I could hear her thinking.

Well… I can’t tell you because that’s covered under employee confidentiality.” I wanted to call her on her bullshit, but she kept talking, “I’m actually calling to tell you that we’re running out of resources to staff your case… we’re going have to get you another agency.”

Are you serious?” I was weary and already had enough shit on my plate, not to mention finals were coming up. I probably should have been more professional and not blurted that out.

Yes. We just can’t keep staffing weekend nights when you keep sending them away. “ I wanted to reach through the phone and punch her in her big fat face. To reach through and choke her incompetent ass.

Well, we keep sending them away because they fall asleep on the job.” There was more I wanted to say, but I still needed them.

That’s why I want to switch you to another company that has the resources to provide you with the care you need.”

She wasn’t leaving me much choice, “Okay… how would this work?”

Well, I’ve already been talking to another agency and they’re willing to take your case, so there would be no be no break in your case. “

What about the nurses I have right now?”

Well, they’d have to get hired by the agency.”

How long would that take?”

About two weeks, but they’ll provide nurses in the mean time.”

Okay, so you’re saying that with two weeks left in the semester, you want us to train all new nurses… during finals, but just for two weeks?” Clearly she had no idea what it takes to train someone new. That, at minimum, it takes a week for a nurse to get used to me and another week for me to trust them enough to go out with them. That means Amber going to school with us… and that wasn’t happening with both of us slammed with school.

No, we can’t do that.” There was silence on the other end, “Amber and I both have finals we can’t train temporary nurses “

Well, we just don’t know if we can staff you on the weekend nights.”

Okay look, we don’t need to cover this weekend because I’m going home for thanksgiving and then there’s one weekend after that and I go home for christmas. So if we can just find one nurse for that weekend, we’re set Then we can just switch companies over break.” She thought about this for a minute, “Okay, we can do that.” It was a small victory. They had fucked up so many times that we probably should have switched anyway. They still didn’t have my plan of care right, if I wasn’t able to communicate and the nurses followed the plan of care I’d be in huge trouble.

After the call Corie said that she would work that weekend if they couldn’t find anyone. so we were set. Now I just needed to worry about thanksgiving.

I wasn’t excited about going home. While my mom had been very supportive in terms of driving up whenever I needed her, she didn’t want me there and neither did anyone else. I knew that all I’d hear about was how I should come home after the semester finished. How I could go to UCSD and they’d help me live in the dorms there. Never mind that the deadline to transfer had passed. They wanted me close to them. Not as much for my safety, but for their own peace of mind.

And that was what exactly what thanksgiving was like. Constant comments about how wasn’t it much better at home? I didn’t say anything, but I did miss it. It was comfortable  and safe. I didn’t have to worry about incompetent nurses falling asleep. But I also knew that I had to move on to the next part of my life, home didn’t work for me anymore. But as soon as I was back in my dorm room that staying wouldn’t be easy. That my family wouldn’t make it easy, they’d try their damndest to get me home. I had to stay strong, but I wasn’t sure if I could.

UCLA Part 5 — Alone

Posted July 7, 2011 by hotwheelzrc
Categories: Stories

My mom has always been overprotective of me, understandably so. She ripped on anyone that she felt was mistreating her baby and she developed a reputation. A lot of people were afraid of her temper, including Amber. This fear makes people listen to her. No matter how much I’ve tried to tell her to back off, she can’t help herself. She wants to know her baby is okay.

The very first day in the dorm, she pulled Amber aside and, unbeknownst to me, told her that if anything to me she would come after her.if anything happened to me.

This made Amber scared, and she kept her informed of everything that was going on. I didn’t want to tell her how much the nurses sucked or how much it drained me. I didn’t answer her when she asked me how things were going because I knew she would worry. But she would just ask Amber and hear about from her.

She would hear about how Amber was more and more stressed. How I almost never went to class and barely went out. I was depressed and I missed home. I missed feeling safe with my nurses. I missed my family.

I remember getting a letter in the mail from my cousin. It was hand written and it said how much he missed me and how proud he was of me. I broke down and wept because I knew I couldn’t go back. I’d never forgive myself.

I felt like I’d worked so hard to get there that I just had to see it through. I couldn’t go back to the past. I knew I was romanticizing it, that I wasn’t happy at home. But it wasn’t easy

One morning, when Corie was late for the millionth time, Amber turned to me and said, “I can’t keep doing this. It needs to get better because this is just too much.”

“I know” I said. I knew she was close to her breaking point and I didn’t blame her.

Around the same time, my family started pressuring me to move back home. My mom would tell me how much it stressed her out, how my brother wasn’t doing well and was on heavy duty painkillers. My dad told me how much it hurt my mom, how the stress was making her sick. My sister told me how selfish I was being. That I needed to think about them and not me. That everyone had to make sacrifices.

I got so sick of it that I started to ignore them. I isolated myself in my room, I felt alone. I was alone and I was the only one looking out for what I wanted. I’d never felt that before. I knew intellectually that that’s how life is, but I’d never actually experienced it. And that feeling of complete isolation never went away.

I think that was when I grew up. When I finally realized that I was the only one looking out for myself. That everyone else were just pieces on a board, and that I was the only one that could decide the outcome of the game

UCLA Part 4- Bonus Video

Posted July 1, 2011 by hotwheelzrc
Categories: Uncategorized

Everyone meet Kumba:

UCLA Part 4 – Nurses Be Crazy

Posted June 30, 2011 by hotwheelzrc
Categories: Uncategorized

So do you have kids?” asked Amber. We were out with our new day nurse, Karen and she was trying to get to know her.

 

Yes.”

 

Oh cool, how many?”

 

Three.”

 

Boys or….?”

 

All Boys.” She said, quickly getting back to looking out the window and avoiding conversation. Me and Amber had been trying to talk to her all day, but she seemed angry at… something.

 

Maybe she was just having a bad day.” I said after she left.

 

Hopefully. Maybe she just doesn’t like you.”

 

Psh, everyone likes me.”

 

The thing I like about you is how humble you are.”

 

I know, right? I’m like Jesus.”

 

She rolled her eyes, “Anyway, we’ll give her another day to see if she’s any better.” So we did, but we just couldn’t turn that frown upside down. I think our breaking point came when we stopped at a KFC and she assumed that we were going to pay for her popcorn chicken. That was the only nurse that we just didn’t like. And I’m pretty sure she didn’t like us either.

 

Next up was Tanya. She was just filling in during the day until we found someone. She eventually moved over to weekend nights.

 

Weekend nights have always been problematic. It’s always hard to find people to work on the weekends because no one wants to work weekends and no one in their right mind want to work weekend nights..

 

Tanya seemed to know what she know she was doing. After all, she’d been a nurse for over twenty years and she’d worked for a lot of famous people before. She made sure to tell you all about it too. She would tell you all about the Beyonce’s grandma or Johnny Depp’s uncle. Not to the point where she was annoying, but just enough to make sure you knew about it..

 

The first confrontation between Tanya and Amber came when we were trying to watch Lost one Saturday night. Our room is set up in such a way that we have to move all kinds wires and stuff over the desk that the nurses use just to watch TV. So that’s what Amber started doing. Apparently she didn’t do this gently enough and moved all the wires over her laptop .

 

“Excuse you, child!” she said indignantly


“Oh, I’m sorry. I have to move it so we can watch TV.”

 

All Amber got was an indignant stare back.

 

“Here, you can sit in this chair.” she brought a chair in.

“I don’t want to sit in this chair, it’s dirty.”

 

“What do you mean it’s dirty?”

“I mean, it’s DIRTY.” Amber tried to wipe it off with a cloth, but, apparently, the chair was covered with AIDS or something because she elected to sit on the floor. The floor was surely AIDS free. And the whole time we watched lost, she shook her head and muttered disapprovingly. But we chose to ignore it, much like you ignore a child throwing a tantrum.

 

It wasn’t until Amber turned off her light to go to sleep that she came up to me. She spoke just loud enough so Amber could hear.

 

“Child”, she told me, “Do you know how old I am?”

 

“Uh… 23?” I said, trying to soften her up.

 

“But no, I’m 40 years old. And I expect a certain level of respect. People these days have no manners. ”

 

They think that just because I work for them that that gives them the right to treat me however they want. But I don’t take anything from no one.”


“Um… Alright.” I said awkwardly.


“And I don’t appreciate it when people are rude to me.” I just nodded along, hoping that she wouldn’t cause a scene at 1 o’clock in the morning. Thankfully, she didn’t and the rest of the night went smoothly.

 

“Man, Tanya just won’t let something go will she?” Amber told me the next day.


“Yeah, she’s…”


“Stubborn? Hard headed? Sensitive? Should I go on?”

 

“No, I think you pretty much covered it.” I said, trying not to laugh.

 

“I think I’m just gonna go watch a movie when she gets here. I want to try and minimize the awkwardness.”


“Sounds like a good idea.”

 

“Hmm, your phone is dead.” she noted, “Have you seen your charger?”


“Umm… yeah… no.”


“That’s weird, it’s not in it’s usual spot.” The charger was nowhere to be found.After a while we stopped looking for it.


Tanya came, Amber left and it somehow came up that my charger was missing. Tanya did not like this.

 

She then made it her personal mission to find my charger. She looked in the drawers, in the little file folder next to my bed, under my bed, in the velcro pockets we hung on the door and had no luck. Finally, she spotted what looked like a charger on Amber’s dresser.

“Is that your charger?” she asked.

“Umm… maybe.” She went over and tried it with my phone. It worked!

“Hey Amber, guess what?” I asked excitedly as she came in.

“What?”

“We found my charger.”

“Where was it?”

“Over there on your dresser” replied Tanya.

“Okay, first of all, don’t touch my stuff.” said Amber.

“Second, that’s my charger.”

“Third, seriously, don’t touch my stuff. Don’t touch my stuff.” She repeated this about five times.

“Girl, you better calm down. I didn’t touch your stuff.” said Tanya.

“Oh my god! YES YOU DID. You just said you grabbed the charger from my dresser!”

 

“Girl, I know you’re used to being spoiled, but you better adjust. This is a very small space and I was looking for his charger.” I’m not gonna use all caps, but everything from this point on was yelled. Very loudly. At midnight in a dorm.

 

“I know you didn’t just call me spoiled.”

 

“Yes, I did. You’ve been nothing but rude to me. So you better step out and calm your ass down.”

“Excuse me? You are not telling me to get out of my own home!”

 

“You better calm down girl, telling me not to touch your stuff. You think just because I’m black that I’m a thief?!” She got real close to Amber.

“Oh my god, you did not just bring out the race card. Race has nothing to do this. And you need to back off”

 

“Why? You want to hit me?”


“What?”

 

“You want to hit me? Go ahead, hit me!.”

 

“I’m not hitting you. I’m done with this conversation.”

 

“Hey… um… Tanya why don’t you go outside and take a break?” I interjected.

“Alright alright.” She went outside.

 

I’m sorry Raul, I’m trying to move on, but she just won’t stop.” said Amber.

 

I know, I know.”

 

I’m just gonna go to bed and we’ll deal with this tomorrow.”

 

By the time Tanya came in Amber was already in bed and the light was off. It seemed like everything was over, but it wasn’t. When I sleep, I use a sensor on my finger that monitors my oxygen. If my oxygen gets low the machine alarms. Problem is, Tanya couldn’t find the cord for the machine.

 

Look in the velcro pockets on the door, that’s where it always is.” I told her.

 

She looked and couldn’t find it. Then she started ranting and raving about how my assistant needed to get up and help her look for it. Then it turned into how Amber was neglecting me and putting my life at risk. Finally, she decided she needed to go outside and call my social worker. Amber got up, looked in the velcro pockets and pulled out the cord for the monitor.

 

IT WAS RIGHT FUCKING THERE!” Amber yelled at Tanya as she came back as she crashed back into bed.

 

The next day we got a call from the agency, “Hey guys, Tanya wants to give it another shot to see if you can work things out.”

 

Amber looked at me with a panicked look in her eyes.

 

Yeah… I don’t think that’s a good idea.” I told them.

 

Thank you” Amber mouthed.

 

What followed after Tanya was a series of sleepers. It’s exactly what it sounds like: Nurses that sleep on the job and have no qualms about it. First there was Mufta, a lanky nigerian man with glasses and a pointy head. I liked to refer to him as Muffasa. Muffasa would fall asleep in the chair next to me while eating sunflower seeds. It didn’t matter how loud or for how I called his name, he never woke up. So I did what I felt was the safer option; I didn’t sleep. At some point, I decided I had had enough. My voice might not have been loud enough to wake him up, but I knew my phone was plenty loud. I also knew that, to the unsuspecting bystander, it can be quite startling. On the very first ring, he let out a high pitched scream and jumped out of his chair. I giggled and quickly hung up before it woke Amber up. I thought he would stayup for the rest of the night, but he fell asleep 15 minutes later. He didn’t wake up until 6:45 am, fifteen minutes before his shift ended.

 

He wasn’t the only one that did this; There was Pat, a lady so old that it hurt to see her. You expected her to turn to dust at any moment. She liked to tell me about her loose bowel movements and how she had to wear depends. She also demanded a 1 hour nap during her shift and took it even though we said no.

 

There was Kumba who showed up in pajamas and with blankets. She would wrap herself up in her blanket and nod off for hours at a time. She did it so brazenly that Amber and I decided to film her sleeping. When we confronted her about it she insisted on asking me if I wanted her to leave that I finally caved and said fine. We were left without a nurse that night and Amber and I didn’t sleep that night.


Finally, there was Peace who, despite multiple warnings, kept falling asleep and had the nerve to get mad at us when we told her that it couldn’t go on. We decided that she was fired at the end of the week, she didn’t show up on her last day.

 

In the end, there was Torie. God bless that woman, she not only didn’t fall asleep, but she knew what she was doing. She always came on time. We had finally found a good, reliable night nurse.


It wasn’t as hard to find a day nurse. Her name was Cori and she could lift me by herself. This was awesome because it meant that Amber didn’t have to be there to get me in and out of my chair. It gave both of us the freedom to do our own thing during the day. The only problem with Cori was that she was always late. Not 10 or 15 minutes late, I’m talking 45 minutes to two hours late. She was always stuck in traffic or having car trouble, but we put up with it because we knew what was out there and, hey, she was awesome when she was there. We had to learn that this was not the right attitude to have and we had to learn it the hard way.

 

 

On the TeeVee

Posted June 23, 2011 by hotwheelzrc
Categories: Blog

So through a little and some connections I was able to get on Telemundo and tell them about my fight against the state. The video is in spanish, so if anyone knows how to put english subtitles on it and is willing to do it it’d be greatly appreciated.

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

The Government: Fucking People Since Forever

Posted June 6, 2011 by hotwheelzrc
Categories: Blog

It used to be that I always gave the government the benefit of the doubt.


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.

 


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