Tuesday, August 5, 2014

My Life With Cerebral Palsy - Pt. 8 - Quotes on Cerebral Palsy

A good friend of mine sent me this article and honestly, it's one of the best cerebral palsy related articles I've ever read.

Obviously I'm a straight man, not a woman who likes other women, and I don't think I'd enjoy bring tied up and my body covered in clothespins, but aside from that everything she wrote is just SO damn relatable.

I mean, I could quote the entire article, from her points about walking the line between able bodied and not, to people who constantly tell you you're "inspirational." God do I hate that.  Or where she talks of coddling "because you've had a tough life / been through a lot."  My brother told me that once, but I disagree. No. I haven't. I have awesome friends, a family that gives a shit, I can support myself and I am lucky enough to be blessed to live in the greatest country on earth.  I have challenges that I wouldn't have to deal with if I didn't have CP, but I am lucky, and unbelievably so. I try & keep that in mind even when I'm frustrated with my body and venting to someone, as I did this weekend (if you read this sorry for my complaining!)

And yes, her point about convincing yourself that your body is attractive / desirable is difficult.  It's a tough sell, at least in my experience.

The author talks about her lover being worried she'd hurt her.  This happens in every aspect of life for those who aren't totally able bodied, but guess what? Don't worry about it.  We've dealt with our bodies little idiosyncrasies forever, so chill.  We know our bodies pain messages better than anyone.  We'll tell you if you hurt us.

Heck.  I tried to do push-ups with a petite young woman sitting on my back this weekend. She didn't hurt me, but I failed. she proved to me I need to get stronger :)

I find that, since most folks don't know much about CP and what they know equals to either "wheelchair bound / cognitive disability" or both. They aren't sure how to deal with folks with mild CP like the girl who I'm quoting or myself. (Admittedly my CP is more mild than hers)  What you end up getting is often either pity or undeserved admiration.

As the piece says,

" At best, disability allows you to create a tenuous peace with your body, and anytime it decides to violate that mutual agreement can be terrifying. You take the time to figure it out — what it likes and dislikes, where it functions best — and stick to that routine, until New Pain reminds you that you’re never quite going to have this figured out."

Read the entire bit about pain and new pain vs old pain.  As someone with CP I couldn't explain it any better than that.

Sometimes, when you do something to ratchet the new pain up 5 notches, you want to scream and punch something. I rarely do.

I went camping recently and didn't realize that sleeping arrangements would turn my pain meter up way, way past my "normal" even with beer, Advil and DFH Honey Rum.  I tried my best to hide it but I was a goddamn grumpasauras come evenings.  Thankfully I have great friends and one graciously kneaded out my back each night, despite the fact that I felt like I was imposing asking for a massage / help.

One night at camp my legs felt like they were on fire most of the night & I tried not to make any noise.  That's the unexpected new pain that scares you. I'm getting older and New Pain is becoming more common.  I need to get a better handle on it and I need to be more preventative rather than just trying to "tough it out" without help. In case you didn't know I hate asking for help. Sigh.

One last point she makes worth mentioning is people looking past your disability.  I was nodding vigorously reading that part!  I spent far too much time trying to do that myself rather than accepting it.  The last thing I need is for family / friends / girlfriends to do the same.  I have CP.  I will always have CP. it's not a disease. It can't be cured, but at the same time it does no one any good to act as though it doesn't exist.  This is something my roommate does to me that irks me. The "just work your right side harder so it catches up" isn't how things work.  It's hard for folks who are 100% able bodied to understand that sometimes, for no particular reason you can pinpoint, you're going to come home limping even though you didn't do anything strenuous to warrant it, that basically, your body isn't going to cooperate.

This is why I do things like get a morning ab workout & push-ups in even on vacation.  I firmly believe that my body is like a car with worn parts, and if I work hard enough maybe the damn thing won't break down prematurely. I can't control other people's misguided assumptions, so I focus on what I can control, which getting this decrepit Dodge Omni of a body as strong as possible to compensate for the out of spec parts :D 

"The problem is not our bodies — it’s the misguided assumptions people project onto them. That we shouldn’t want them. That we don’t know how to use them. That they need to be cured. That’s what I want the people in my life — friends, family, girlfriends — to look past. I don’t want them to look past me. My disability is essential to my body."



Tikkidaddy said...

As both a disabled CP veteran of 50 yrs. and a gun owner, I wonder how many consider the idea that there are those of us who depend on our firearms as much for our safety as a wheelchair or pair of loft strand crutches? I mean, when you cannot run and hide, cannot fist or knife fight or use the old Louisville Slugger to persuade a home invader to exit stage left, what else to do? 911 is a great idea...but no one can be everywhere at once, and beaming up isn't an option

Tikkidaddy said...

Maybe I should've edited my previous comment, but I'll learn more as I go so forgive my ignorance please. CP changes with age, and so does ones tolerance for the "right and left" bickering over the 2A. I live in the south but I'm not one of those folks who think that a gun is the BEST way to solve any problem. CP CAUSES you to be on constant vigil to make sure right and left are working together for the most functional life possible. Spasticity is quite literally a pain in the rear for most of us, and every time someone in our society goes "spastic" and snaps, I feel my right to defend myself from the less enlightened and intelligent or uncaring slipping away. There needs to be a voice for disabled Americans who view the firearm as a traditional and necessary tool for target practice, hunting, shooting sports, and God forbid, self defense. Not JUST the NRA. Shooting is the only sport I am able to participate in and enjoy, as well as the other more important issues I have mentioned. Both my wife and myself are disabled, and she can outshoot me. I'm not embarrassed about that fact, as it tickles me all over better than anyplace else!! So why is it that when a disabled individual finds happiness, on a normal....lol...level that it seems everything one can imagine is determined to upset the peace, and make you surrender that too??