Friday, December 17, 2010

Cerebral Palsy: It's Not as Sexy as it Sounds

I have Cerebral Palsy.  I know I've mentioned it in various posts (like this one, that one, or yep, that one), but I realized today over coffee with one of my close friends, as she was asking me about my experience with it, that I've never explained it in my blog...

[Take a second to read the info on the Mayo Clinic page, if you want. I like that site because it lays things out very clearly and concisely.]

If you're wondering which things apply to me, here's a short list:
  • Variations in muscle tone-stiffness/weakness
  • Stiff muscles and exaggerated reflexes (spasticity)
  • Lack of muscle coordination (ataxia)
  • Tremors or involuntary movements
  • Slow, writhing movements (athetosis)
  • Delays in reaching motor skills milestones (as an infant) , such as pushing up on arms, sitting up alone or crawling
  • Favoring one side of the body, such as reaching with only one hand or dragging a leg while crawling-My right side is my weak side and my arm will hang and/or my leg will drag, especially when I'm tired or in pain.
  • Difficulty walking, such as walking on toes, a crouched gait, a scissors-like gait with knees crossing or a wide gait-Before my surgery, I was on my toes and crouched...nearly impossible to walk that way.
  • Difficulty with precise motions, such as picking up a crayon or spoon-Or holding a pencil, handling scissors, typing, buttoning/zipping/snapping etc. As a kid I went thru a lot of PT to learn how to do those things, and I still get frustrated while doing it from time-to-time...particularly when you add a squirming toddler to the equation.

The lack of explanation is partly because it's a difficult disorder to explain, affecting each of us that has it a bit differently, partly because I don't even fully understand it, and mostly because that is not how I want people to "see" me.

 A brief history of Me and CP:
I was born about 3 months early.
I was 2 lbs. 6oz.
I needed surgery right away (and lived in a incubator for the first few months)...My heart and lungs were underdeveloped.
They told my mother that I wouldn't live through the night.
When I did, then they said I wouldn't last the week.
As I proved I was going to be around awhile, then it turned into:
She'll be mentally handicapped, she won't talk, she won't walk. and so on....

I talked very early. And from what I was saying, it was clear that I was very smart.

But I didn't walk. I didn't move very well at all.

When I was 2 and a half, they diagnosed me with Cerebral Palsy.

Along with that was more of what I wouldn't do...and leg-braces and walkers and wheelchairs and the mine-field that is the school-yard  playground.

When I was 7 years old, a surgeon decided that I would be a candidate for this experimental surgery.  It was risky, but it was free. It in my childhood mind, offered the possibility of being normal.
Yeah, it could backfire, and I could never walk again or DIE, but WHAT-EVER.   
Sign me UP!

The recovery from surgery was hell. It was long and excruciating and exhausting. Add in the less-than picturesque environment that was my home life, and I wasn't sure I was going to make it.

It took about 2 -3 years to get to the place I now (more or less)  find myself physically. I had to relearn to sit, crawl, walk, the whole shebang.  but the first day I went to school without a walker or braces or orthopedic shoes was one of the best days of my life.


I spent most of my childhood as the "handicapped" girl. The "retarded" girl. The "girl who walks funny" girl.

And I was bitter. I still was in pain. I still had tremors and a limp (among other things).
I still was never going to be an Olympic gymnast/ballerina/high-heel wearing supermodel.

I was never going to climb a tree. Or ride a bike.

People looked at me with that "Ohhh, she's special" look of pity on their faces...

It pissed me off royally.  You mean I went through all of that for NOTHING?

(Being told that I was worthless at home really wasn't helping either)

Fuck me.

But then I pulled my head out of my ass and realized that the only way I was going to have a life is if I got the hell outta dodge and ignored all the voices said:

NO You Can't.

So I fought it. Lied about it even....I didn't have Cerebral Palsy, I just had been in a car accident. People seemed to accept and deal with that easier than CP.  I did my best to hide my symptoms, and always tried to act like I was fine. If I was hurting, I tried not to show it. If I needed help, I would have rather injured myself than ask for it*. I avoided situations where my condition would be glaringly apparent.

I refused to apply for a handicapped  placard. To me, that was like pinning a big scarlet H to my blouse. Hell to the no.**

I pushed myself  and did things that I probably shouldn't have, but I was so desperate to just be like everyone else. To prove to myself that I wasn't trapped by my disability.

There are times that I did feel trapped. That I felt sorry for myself. I still do, occasionally.

But I know that I am so very lucky.
That it could have been so much worse.

Sure, I need help putting on socks and shoes, and it's hard for me to do certain things that most people take for granted, but at least I can feed myself. At least I can breathe on my own...there are those with CP that can't.

I do fear the future, what getting old will be like for me. For my husband and children. I worry that my son will miss out on things because of his mother's limitations, I worry that my husband will too,  for that matter.

Sometimes, my fears overwhelm me, and I feel defeated. But I constantly remind myself that I so lucky...To have overcome so much. To have been able to live the life I wanted. To have amazing friends. To have a loving husband and beautiful son.

It took me a long time to accept that I had Cerebral Palsy, (and as such, there would be complications/limitations-I was gonna have to tackle life in a different fashion than I'd hoped) and a long time to not try and hide it.

I now am very upfront about who I you may have noticed...ahem....perhaps...

I'm so happy that I finally let myself do that. It's made me a better person.

That being said...

The General Public can often be unkind to those who are disabled:
They often treat you like you're contagious, or that you somehow did this to yourself. Like you're not a whole person. They ask rude questions and make idiotic assumptions.

I had a guy who told me once: I really like you, but I could never date a cripple. I said: Well, I could never date an asshole, so no hard feelings.

My husband was once asked if he married me because he had a fetish for gimps. TRUE STORY.
(It's a miracle that individual remained alive....)

I don't mind if people ask  questions. If they want to know more about my condition-what it is, what causes it, etc., but a little tip? Don't lead into your queries with:
"What's wrong with you?" Or, "So, are you like,  retarded?" 

It will not end well. When asking questions, be respectful. Or I will make you sorry.

(In all seriousness, if you have any questions, feel free to ask! I'll do my best to answer them!)

*If I'm being honest, I fall into that pattern of behavior still now and then because I don't want to be a burden, or be seen as weak. It's something I continually work on. 

**I want to be very clear about something:
I have an enormous respect for the Disabled community. I was wrong to be ashamed of my disability. I was wrong to hide it/lie about it. No one should ever be ashamed of something like that.  I was frustrated and afraid. I was made to feel like a burden by the people who were supposed to be caring for me.  I just wanted to be treated like a person, and as a child/teenager, denying my CP was the only way I thought I could be.  I would never want a young person with any sort of disability to read this blog and think that they should do that too.  Be proud of who you are. Don't hide and don't lie.  Be honest with the world and yourself. That's a more fulfilling life that faking it could ever get you.


~Erica~ said...

Courtney (Gigi)

I have known you for the better part of 8 years and having never heard this story, I am glad I never did. I have always loved you on face value. I love who you are, what you are, and what makes you and CP has never been a part of that for me. I am proud of you for this post though, it's hard to be honest about something that you are pissed at. :) I love you and loved reading more about your journey.

--Bettie! ;)

kerry said...

I just know that when i first met you at vanguard, i wanted to know you . your personality, your humor, your friendship--that's all i saw.

thank you for sharing this part of your life, as i am humbled by your honesty.

you are loved!

he calls me wifey said...

So I read this last night and as much as I wanted to comment right away, we were on our way to a Christmas party and about to get outta the car, but I just want you to know that (and I know I've said this to you before) I admire you so much. Not only for all of the strength you have built due to all of the pain (physical and emotional) that you have experienced, but because you are so much more than your physicality.

You have always come across to me (and I'm sure to everyone else who knows you) as a strong individual who does not let her imperfections or set backs (physical and otherwise) hold her back from being the kind, hilarious, outgoing, witty, intelligent and wonderful person that you are.

You shine, Court. Seriously. I admire your adversity and perseverance to no end. You are truly an inspiration and a total gift to me!

I'm so blessed to know a woman such as yourself and to be continually amazed by your story and life.

I love you to pieces girlfriend!

Stephanie said...

youre so freaking awesome. i told you at coffee, sometimes i worry that i am a B bc i forget that its even something you struggle with everyday. (hurry UP courtney! hahaha)
thank you for being brave enough to allow me ask what im curious about and not creating an uncomfortable tension (like i should already know) YOU ARE AMAZING! AND I ADORE YOU! and am i so proud of you everyday and soooo happy for you that you have everything you were always you would not be able to have!

Lupie Mama said...

Amen to all of the above comments! You are such an incredible person Court. Loved your honesty in this blog, I think I just got inspiration for my Lupus blog that I haven't written in for a couple of months. Thank you for reminding me to be grateful within my own disability. Owen is going to be such an amazing kid because of the love he receives and learns about from his mommy and daddy. Love you sister! xoxoxo

Britt said...

You = Super duper really amazingly freakin' awesome. Just remember that on those hard days. You're a beacon of human accomplishment and spirit, and a gas to know. Yanno, like, laughing gas. You give the smiley giggles. Anywho, I heart you.

kristi said...

You're an amazing person and I'm thankful to have you in my life! I admire your that must be so hard, but I agree with what others have said here... your CP does not define you! You are an extremely caring, funny, loving and interesting person (and mama) and an inspiration to all those around you. xoxo

Sheila said...

My godbrother has CP and can't really walk. At first it was a little strange to me, but I got used to it, like I got used to his sister's crazy hair and his brother's attitude. So it shocks me now when people assume he's retarded. Um -- since when are all physically disabled people retarded? And what a rude thing to ask someone!

I admit to being a little bit awkward about others' disabilities sometimes. I'm afraid to call attention to them, but at the same time, I'm afraid of being inconsiderate by not knowing or remembering what they need. Thanks for this post; it helps.

JayneSees said...

@Sheila-I'm so glad it helped! If you have any other questions, email me at any time! Take care!