Sunday, January 17, 2010

Wigs Are Itchy!: A Cerebral Palsy FAQ




Y'know, readers, every time Martin Luther King Jr. Day rolls around, it gets me thinking. It gets me thinking about where we were, where we are, and where we've yet to go. We, as a nation, have come so far with our acceptance of other races, genders, cultures, and religions, and although there's certainly progress to be made on those fronts, we've come a long way, and those groups can generally sleep peacefully knowing that they'll wake up in a close-to-perfect society that accepts them. That being said, at least one group of people still have a long road to acceptance. I'm talking about disabled people.
In my day-to-day life, being physically disabled, I've come across a lot of ignorance about what disabilities like the one I have (cerebral palsy) really mean. Now, I don't blame these people for not knowing about disabilities, as most of them aren't trying to be mean. It's incredibly easy, in this day in age, to set out to honestly learn about people with disabilities, and come back either confused, misinformed, or, worst of all, empty handed. I know how hard it is to approach somebody with a disability and ask them about stuff. I've asked certain people about their disabilities, and the only thing I can think of is "will I offend them?" or "is it okay to ask them things?" or "what if I sound like an idiot?". That's why I'm doing this post, a frequently asked questions post about my specific disability (cerebral palsy). That way, you can learn what it's really like to be disabled, and not have to be embarrassed about asking somebody.

OK, I've bored you enough. Let's jump right into some questions.


1. What is Cerebral Palsy?
No, before you ask it's not the subtitle for the next Call of Duty. Cerebral Palsy, or CP, is a muscular disorder caused by lack of oxygen to the brain, usually caused by being born before you were fully developed. This lack of oxygen causes parts of the brain to be damaged, including a tiny part of your upper right brain called the cerebellum.


2. Okay, enough with the fancy words. What does this do to you, then?
Y'see, here's where it gets a bit crazy. Depending on the person, different parts of the brain gets damaged, causing different things to happen to them. Some can walk. Some can't. Some can talk. Some can't. Some can control their bladder and bowels. Some can't. It all depends on which part of the brain gets damaged.


Personally, I feel lucky. I can stand, for a while, if somebody helps me (this is hard to do, though, so I use an electric wheelchair.). I can talk. I can control my bladder and bowels.


One thing that's common among people with CP, though, is tight muscles. The best way I can describe it is like this:


You know how when you watch a scary movie and Jason leaps out from behind the door with a chainsaw and decapitates some poor guy? You jump, right? When you jump, your muscles get all tight for a few seconds, and it takes you a bit to relax. Well, imagine that that happened every day, without warning, and it took you a few minutes to calm down every time? That's CP for you. It actually doesn't hurt much, and you learn to relax yourself quickly. It's annoying, but it's not awful.


So to recap: tighy muscles, in a wheelchair, otherwise normal.


3. Do you ever wish you weren't in a wheelchair?


I'd be lying if I said I don't feel bad about it from time to time. But, y'know, it's something you learn to live with and embrace. You can't change it, so why get all sad about it? This is the way I am, so I'm going to be happy with it. I'm not Edward Cullen. I don't want to spend forever moping around about being a vampire, when I could be, like, actually doing stuff. This is probably the thing most people get wrong about disabilities. People with disabilities aren't depressed goth-emo-vampire-pity-mongers who think their lives are crap. We've got friends and family and stuff to do.


4. Do you sleep in your chair?

I always get asked this one, and I have no idea why. Nope. I sleep in a normal bed, although it's modified to raise in lower to help people lift me into it. For reference, I'm a stomach-sleeper. :)


5. Wait, for people to lift you into it?
Mmm-hmm. One of my parents usually lifts me into various places, like my bed. I'm working with a physical therapist on how to transfer by myself, though. We do have a mechanical lift on our ceiling, but that's mainly used to get onto the toilet.


6. Speaking of, how do you go to the bathroom?

We've got two bathrooms in our house. One has a bunch of wheelchair equipment, like hand-rails and a roll in shower. One's a normal one. Usually, I tell one of my parents that I have to go and we do what's called a stand-pivot transfer. That's a fancy word for lifting somebod up, pulling their pants down, and setting them onto the toilet. In case you're wondering, yes, they leave the room while I'm doing the things that one gets onto a toilet for.


7. How do you shower?

Somebody usually helps me, erm, get stuff off, and then I get into the lift. The lift lifts me onto a seperate shower chair, obviously not electric. Water, soap, etc. proceeds.


8. Ask and answer the weirdest question you've been asked about CP?
All people offended by certain vulgar things should skip the next two sentences.

Q: Do you have a penis?

A: *after recovering from shock and akwardness* Yep. Do you?


------------------

Good, you're back.


9. Have you had any surgeries?

9, to be exact, 6 of which were when I was a baby. #7 was to loosen my hamstrings and heel cord, that if left unloosened would've curved on themselves.
Grossed out people, skip this part.
#8 was "down there". Keeping in mind that I was born early, I didn't get enough hormones, and so while "things" were there, one of those "things" didn't drop.

You're back again!

#9 was a complicated spinal surgery that is too complicated to explain in a timely manner. If somebody really wants to know the minute details, ask i comments and I'll answer.


10. Any advice for people with disabilities?

Wigs are itchy, so be who you are.
I hope this FAQ has opened up your eyes to what CP really is. If you've got any questions, feel free to ask them in comments, even if they're as weird as the aforemention weird question. I'll answer every one in comments. Remember, you can comment anonomously! Even if you don't have questions, make sure to spread this post around by clicking on the little envelope icon beneath this post.
(Also, for those of you new readers who know me personally, don't use my real name in comments. Use Tomato.)
Thanks,
Tomato

3 comments:

  1. Thanks for the info. I'm one of those people who believes that the more you know, the better, and this is something I knew nothing about. So now I know.

    I do not have a question, as those 10 summed up things pretty nicely.

    ReplyDelete
  2. I enjoyed reading your post, Tomato! You gave alot of good information and in a humorous way (you make me laugh). I have a couple of questions:

    Is there anything that you can't do, because of your cerebral palsy, that you really wish you could do?

    What is the most difficult thing you have to deal with day-to-day, that other people who don't have cerebral palsy don't have to deal with?

    If there was some new treatment out there that doctors thought could help people with cerebral palsy to walk, would you do it?

    When you are starring in your own dreams, do you walk or do you use a wheelchair?

    Thanks!
    Your favorite relative

    ReplyDelete
  3. Nice blog tomato if people would just look at others with their hearts and not theirs eyes it would be a much better world. Yes eyes that work prefect can be blind! There are alot of caring people in this world, I guess we can't let the few blind people that can see spoil life for the rest of us

    ReplyDelete

If you're having problems commenting, please e-mail me (silvertomatoproductions@gmail.com) with a description of your problem. I've contacted Blogger about the issue, and it should be resolved soon,

Sorry,
Tomato