Love on Wheelz » FAQ

Wheelzinese

hotwheelzrc — Wed, 24 Sep 2008 14:58:30 +0000

Q. What have you not been able to do because of your disability that you regret not being able to do?

A. There’ve been a lot of things I missed out on. Prom, parties, school football games… Come to think of it, I didn’t have much of a social life or even very many friends in high school. I think that was more due more to my shy (read: pussy) nature and not necessarily because of my disability, though. I know it doesn’t seem like it, but I’m extremely shy at first. I’m deathly afraid of talking to people I don’t know. See, I have a very nasally, hard to understand voice that I’m very self conscious about. A lot of times people will look to whoever I’m with to translate, “What did he say?” they’ll ask, as if I’m speaking some strange foreign language. Wheelzinese.
Because of it, it’s very hard for me to make new friends. It’s not like when you were a little kid and the friend criteria consisted of both of you liking the green power ranger. In a way, I kind of yearn for those days. When I didn’t have a trache or feeding tube. When I could eat delicious chicken nuggets and play video games with my friends. When I was somewhat normal.
The truth is– and this is very hard to admit– the only friend I have right now is this guy. I know that it’s my fault. That I have to break out of my shell. But it’s so hard sometimes. I’ll decide to talk to that guy over there, and I’ll start to sweat and hyperventilate and think he’s gonna laugh at me. “LOOK AT THE CRIPPLE!” he’ll say, ” IT THINKS IT CAN BE NORMAL!” and everyone will laugh. And when I finally work up the courage for a, “Hi…”
“Hi.”
“How do you like this class?”
“What did he say?”
Fuck. Fuck it. I’ll go back in my shell. It’s easier, it’s warm, it’s comfortable. It’s… it’s lonely.

Heredity

hotwheelzrc — Fri, 13 Jun 2008 08:00:18 +0000

(Quick reminder: Feel free to submit questions via the contact page on the right hand side of your screen.)
Q. I’ve read that MD is a hereditary disease. Does it run in your family?
A. As far as I can tell, me and my younger brother are the only people in my immediate family who have it. When we were first diagnosed, the doctors made my parents go through their family trees. They only found a great great great aunt (or cousin, I’m not sure) who used a wheelchair. Since MD is recessive, I think it lay dormant until the stork combined my parents’ genes. (I refuse to believe they had sex.)

Birds of a Feather

hotwheelzrc — Tue, 10 Jun 2008 20:28:25 +0000

Q. Do you normally roll (no pun intended) with other handicapped/wheelchair kids, or with normal kids?
A. 99.99% of the time I hang out with normal kids.
There was this one kid in my old elementary school in Tijuana, we were in the same grade, same class even. He also had Duchenne MD. What are the odds? Two Duchenne MD kids in the same class? Especially in TJ, where health care blows.
We ran in the same circle, but never really got along. At the time, he could still walk but you could see the disease progressing. He stumbled a lot, had trouble getting up, and moved like a penguin. They were the exact same symptoms I had when I was a baby.
He always ripped on me for some reason. I think it was jealousy. I got better grades, I was cuter and, to be honest, friendlier. Not that he wasn’t exactly friendly; he was just bitter. You know what, though? I think the real reason he was jealous was because, since I was in a chair, people sympathized with me more than him. I guess the chair is more socially acceptable than walking funny.

There You Are Using Your Lungs Like Suckers

hotwheelzrc — Tue, 27 May 2008 01:11:42 +0000

Q. You mentioned some side effects of MD are problems with sitting and eating. Is there anything else?

Bedside Ventilator
Vent HeaterA. I use a ventilator 24/7 because I can’t breathe by myself. My bedside ventilator pumps the air through the tubes into my lungs via a trache tube. I don’t really know what all those numbers mean. The only difference between the bedside vent and the wheelchair vent is the heater.
It keeps the air warm and moist. Usually, when you breathe, your nose does this naturally. But since I don’t breathe through my nose, the heater does it. Without it, the air is cold and dry. It’s a big part of why I can’t stay in my chair too long.

Ambu BagThe last picture is the Ambu Bag. I take it with me wherever I go. It’s basically a manual ventilator. Should the vent decide it wants to stop working, you plug it in to the thrache and squeeze. I also use it for showers and if I get a mucus plug and the vent isn’t generating enough pressure to pump the air past the plug into my lungs. You can generate more pressure with the bag just by squeezing harder. The plugs happens happen often. The way it was explained to me was that the trache is a foreign object, so the body produces mucus to try and expel the object. Stupid body, you’d think it would have learned by now.
And yes, I am aware that the extension looks like a big floppy dick. And that it plugs into my throat. Shut up.

Fine Dining

hotwheelzrc — Tue, 13 May 2008 21:47:24 +0000

Sorry for the hiatus there. I was having some issues getting these pics, due to the fact I had no camera.
Q. How do you eat?

Syringe, tube, and feeding pump.
A. 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.

The Perks

hotwheelzrc — Thu, 27 Mar 2008 06:35:11 +0000

What’s the best thing about having MD and being confined to a wheelchair?
A. I tried really hard to think of something for this. I thought about the fact that people do everything for me, but that’s not as cool as it sounds. If I have an itch and everybody is busy, I have to wait. Then I have to tell them exactly where it itches, which is like leading a blind man across the freeway.
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

What It Feels Like

hotwheelzrc — Thu, 20 Mar 2008 06:33:23 +0000

Q. Does it hurt? What’s it feel like?
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.

MD and Me

hotwheelzrc — Thu, 13 Mar 2008 06:45:08 +0000

Q. What is your handicap?
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.

Meeting the Public

hotwheelzrc — Mon, 10 Mar 2008 06:00:23 +0000

Q. How are you really treated by the general public?
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).”