Recently I've been having problems with my parents. They still think that they should be able to dictate what medications I should take, or the amount of water I should drink. I'd like to think I'm pretty in tune with my body. I'm always the first to know when something is wrong and I know what to do. So I don't think it's terribly unreasonable for me to decide what goes into my body. Especially now that I'm a legal adult. But what can I do when they decide they're going to give me a medicine? Swat it away? Run away? I'm reduced to screaming, "NONONONO!" Like a goddamn child. But they just push it in through the feeding tube. It's frustrating as fuck when you can't have any control over your life. And I guaran-fucking-tee this wouldn't happen if I could walk.

Q. How do you eat?

Syringe, tube, and feeding pump.
It depends. I can eat food by mouth when I get cravings, but not enough to be nutritious.

99% of the time, I use a feeding tube and syringe as shown. My nurses pour the food into the syringe and let gravity do the rest, which I love because I can feel it going in, and it gives me the feeling of being full.

When I use the pump, you turn it on and select the speed (displayed on the screen) you want the food to go, but at any speed it's slow as hell.

You hang a bag on the pole and put the long plastic tube in a slit in the right side, then the other end of my tube goes through my stomach. The speed depends on how I feel and how long I want it to take.

Neo in Spin Kick Mode.
The food itself is called Portagen. My cells can't burn fat, so apparently this does some fancy stuff that helps me with that. I'm not sure what it is, I just know it is good for me.

When the pump is done, it beeps, alerting Neo. At which point, he turns it off with a high-flying spin kick.

If Neo isn't in the mood (he's fickle) the nurse does it.

Then I thought about the parking. But that is so overdone it's gotten annoying. When you start seeing MySpace quotes and bumper stickers that say, "I'm in it for the parking," you know it's turned into a cliche. Seriously guys, it was mildly amusing for all of five seconds. Stop it. Besides, the spots aren't all that great anyway. The only reason I use them is because I need space for the ramp.

There's really nothing about my condition that I wouldn't gladly give up to be normal. Hell, I'd be happy with complete use of my arms.

So anyway, the best part? Not a damn fucking thing

"Remember guys, we're not supposed to be down there. If they catch us they will send us back here." I nodded at our floor.

"Where did you hear that bullshit rule?"

"Yeah, you're just making stuff up, Saul," Rodrigo added.

"Yeah, you're right." I rolled my eyes.

I held my breath, speed rolling through the casino floor. At one point, a security guard saw us. I looked him in the eye, smiled, gave him a friendly nod and kept going. I gave a sigh of relief as I wheeled through the casino doors. I looked around me, amazed at all neon lights, even though I had been there several times.

"Where do you guys want to go?" Rodrigo asked.

"I don't know. Caesars'?" Pedro had never been to Vegas. He only knew some of the hotels.

"Caesars' is for old people. Lets go to the Mirage. Remember Lety (my mom) said there was a cool nightclub there?" Rodrigo reminded him.

Great. These assholes choose the hotel five blocks from here in THIS fucking weather. It's 20 fucking degrees out here. I'm going to freeze to death, I thought.

As I wove through the maze of old Asian ladies, drunken people and stupid people, I started to feel a sharp pain on my driving hand. It was like a thousand needles stabbing me, but I ignored it thinking I could power through it. Then came the numbness. I looked down at my hand. It was turning purple. My limbs stiffen up in the cold, much like normal people; Except more pronounced. Doctors so far can't explain why this is.

"Hey, guys!"

"What?" They kept going.

"Wait!"

"What's wrong?"

"I can't drive anymore. My hand is too cold."

"Come on. We're almost there." Pedro pleaded with me, knowing what I was about to ask.

A. This is tough. The disease itself doesn't hurt, but the things it causes do. For example, Scoliosis is a common side effect of MD, so I'm in constant back pain while in my chair. I also get numb legs all the time, so I have to be repositioned regularly. I can only go about two hours in my chair without being in pain/discomfort. The only time I'm really comfortable is in bed, and even then I have to be in the perfect position, which differs from day to day.

Oh, and I often accidentally sit on my balls a lot, but I attribute that more to their size than to MD.

When we traveled to matches against other schools the coach never let me play. He would always make me the "referee." Even at eight years old I knew it was bullshit, since there was a real referee already. At one game, I kept asking him when I could go in. "Soon" he said, "Soon". I kept asking him, pestering him, until he broke down and said, "I can't let you play. Your chair covers the whole net. It's not fair to the other kids." I stopped "refereeing" after that.

Later, in sixth grade, I was playing soccer in the backyard with my best friend at the time. My mom was dressing my brother, my sister was washing the dishes, and my dad was fixing something. I was going as fast as my motor could, weaving and spinning with the ball, at least in my mind, when I ran it over. I teeter-tottered on top of it for what seemed like forever and fell sideways with the chair, smacking my arm on the pavement..

"RAUUL!" my friend screamed. Upon hearing this, my sister ran out and screamed, "OH MY GOD RAUL TIPPED OVER! HEEEEELP!"

"YOUR BROTHER IS DEAD! HE'S DEAD. DEAD!" my mom yelled, which made my brother start bawling.

All while I shouted, "I'm fiiine. I'm fiiine."

My mom peeked out the window. "S-s-should I call 911?"

My dad ran toward me and, never being one to panic, asked me if my neck hurt.

"No," I said, "just my arm."

He put the chair right side up and took me to the ER.

I had never broken any bones prior to that. No significant bruises, cuts or anything that required x-rays or even stitches from playing outside, and it had always bothered me. So, when I found out that I had in fact broken my arm, my eyes lit up and I couldn't stop smiling the whole night. I rolled into class the next day proud of my pimpalicious cast.

A. I have Muscular Dystrophy (MD). It affects the muscles by making them progressively weaker. This means that I have minimal use of my arms and legs and I use a power wheelchair to get around.

In addition, I have a tracheostomy and use a ventilator to breathe, as the lungs are controlled by the diaphragm, another muscle. These machines basically keep me alive; one minute without the ventilator and I faint. My trache tube needs to be replaced with a new one every two weeks, since it's made of plastic and gets crusty, increasing the risk of infection. I also have a feeding tube because the muscles that I need to swallow are very weak. I can eat a little, but not enough to get proper nutrition.

As you can imagine, I always have to be with someone who can take care of me.

The doctors first thought I had Mitochondrial Myopathy, but discarded that after more tests. I may have a new type of MD and I'm thinking of naming it. Hearing, "Mr. Smith, I'm afraid you've contracted a condition called Superwalking," just before hearing, "which means you'll soon be learning to walk without the assistance of legs," would in some way soften the blow. I'm considerate like that.

"Imma buy underwear and chips and a game and one of those big bouncy rubber balls that bounce a lot. Those are AWESOME." I told them as we entered the store. I was free from my parents, if only for a couple of hours.

"You going on a spending spree, hmm?" my nurse asked.

"YEAH! SPENDING SPREE! WOOO!"

My sister looked at me like I had suddenly grown a large tumor on my forehead, "Uh, yeah... That's great. I'll be in the book section if you need me."

She disappeared around the corner and I went merrily on my way. I got to the underwear section and was happily perusing their fine selection when I noticed an old man looking at the casual wear. He was balding, with liver spots all over. He wore black dress pants up to his stomach and a white, striped polo shirt. He kept looking over at me and then quickly looking away. As if he was debating whether or not he should say something.

I'm used to this. Although it's usually from little kids. Most of them get caught looking at me by their parents and are scolded. They think they've offended me. God forbid you offend the poor cripple. The truth is, I don't mind. Kids will stare; it's something new and foreign. Hell, I often stare. It's human nature to be curious. Every so often a kid will tug on his parents' sleeve, discreetly--in his mind--point to me and whisper, "Mommy, what's wrong with him?" "I don't know," she'll say, "why don't you go ask him?" I'll pretend not hear this. He'll come up to me, look to the ground and say, "Excuse me, why can't you walk?" It's the cutest thing watching them squirm, thinking they are breaking some unspoken rule. Only to find out that's it's okay to ask questions. And I imagine that's one of the things this man was pondering. The other thing wasn't so obvious.

He finally worked up the courage and came over.

A. Most people just keep to themselves. But, occasionally, a person will come up to the person with me and start talking about me when I'm right there. It infuriates me to no end. I mean, I know I'm not the most handsome guy in the world, but am I so ugly that I look retarded?

Another thing I abhor is when people talk down to me. I know you mean well Mrs. SoccerMom, but cut that shit out.

Oh, and pity. Allow me to quote Tucker Max because he says it best, "...it's just it always seems like everyone is always so condescending and saccharine about cripples. I mean, yeah it sucks, but they are human. There is no reason to treat them like dolls or sacred goats (that, and they always get the best parking spaces and it enrages me)."

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