Tuesday, September 30, 2014

My Life With Cerebral Palsy - Part 9 - What is "Normal?"

When you grow up with any kind of disability there's this overbearing need to be "normal" or at least to do what you can to appear that way to the able-bodied.  Society drills it into you, and your parents do too, in a well-meaning way, by telling you that you can accomplish all of the things that any "normal" kid can.

Here's the thing though, what's "normal?" and more importantly, does it even matter?

On particularly bad days at work, when I'm limping noticeably or someone catches me grimacing and asks what's wrong my first response is two-fold.  One, lie and say I'm fine because a 29 year old man shouldn't limp around the office. Two, feel ashamed because "fuck, I slipped up and didn't hide it well enough, and someone noticed." Three, lie about why I’m limping once I've been made, because I don't want most of my co-workers to even know I have CP.

You know what though?  Fuck that.  Why should I feel ashamed? Because I didn't hide the reality of what my body is enough for others to realize that it's not like theirs? Why?  As someone put it to me recently "It's not my job to make other people feel comfortable." How and why did I learn that kind of self-shaming behavior?  So I was limping.  I limp Every Single Day, only some days it's not bad enough that people notice or say anything.  I am in pain, Every Single Day.  That's my reality.

My roommate will sometimes happen to notice I'm limping and ask what's up, what happened etc. etc.  I guess I said something to him about my walking and he took it as I want to walk better, not slap my foot as much etc. and because he realizes that I can walk more "normal" sometimes he'll do this "are you thinking about it?" comment to me, to remind me to think about how I'm walking and walk more normal.  I understand that he's trying to help, but this is the difference between my perspective and that of someone able-bodied. I have CP.  I am never going to walk "normal" and that is ok. 
Just because I can force my body to do it for small stretches doesn't mean I can flip that switch on 100 % of the time.  It's exhausting to do even for small stretches.

Parents do the same thing, even though they’re well meaning.  Just the other day my father sees me doing pushups.  He tells me I shouldn’t do so many pushups, I shouldn’t work out so hard because “you might tear something.”  I understand trying to protect your kid, but if that kid gets hurt trying to do good things to better himself, then so be it.  He also tells me not to do pushups because my left side will take over and my muscular asymmetry will get worse.  He, and frankly lots of able-bodied people have told me over the years “just work you right side more, it’ll catch up.” That’s probably true for able-bodied folks, and I know I used to stubbornly fool myself into believing it. I would go work only my right arm. I'd do extra reps at the gym, yet I could never get that side to look normal. I mean, my right side doesn’t receive and interpret signals from my brain the same or as efficiently as my left side.  All the muscles on that side are in a perpetually different state, even at rest, than on my left, so no, it won’t “just catch up.”  I can get stronger yes, but the muscles will never behave the same.

I’ve always had a thing about my muscular asymmetry.  It’s bothered me most of my life, as part of that “not normal” thing.  But I’ve had people in my life get me to see of late that, honestly, it’s such a trivial thing to let bother me.  I don’t think it’s a stretch to say that physically I’m in the best shape of my life.  I think that perhaps, because it was always an issue for me and I always wanted to even myself out, that certain people feel they need to remind me that I’m mildly asymmetrical.

Here's the problem with trying so hard to appear "normal" and hide that there's anything wrong with you. It's exhausting, mentally and physically, even though you're doing it almost unconsciously. Even worse, when you inevitably fail to hide, you feel like you screwed up somehow.  My CP is very mild compared to a lot of people, and yet even I could not possibly hide it 100% of the time. When I read this article and saw how this complete stranger, a total asshole in a bar, was treating an amputee, I was appalled. I was appalled not just due to this creeps behavior, but also by the fact that the woman felt she had to in any way explain herself to him. Here's this asshole, a total stranger, basically treating her like she's some kind of circus freak, and she's being NICE to him.  You should never have to explain your disability to someone who’s being an ass, yet so often we feel like we’re obliged to, like not explaining is somehow rude.  It is not.

One thing that people tend to do almost without realizing it is to make comments like “you’d have been great “if.” Other times they'll proceed to say what would be otherwise be a compliment followed by “for someone with CP” without understanding how condescending that is from my perspective.  I can remember times where my dad would mention how great of an athlete I would have been had it not been for my having CP.  I remember in my early 20’s an old high school basketball teammate saw me out running.  I stopped and we got to talking and he mentioned how good I was back then followed by “you’d have been so much better if not for your CP.”  I never snap at folks or get angry at them, because it’s not something to get angry about, or hold against them, but from my perspective such comments have always felt condescending.  I mean would you walk up to a 3 ft. tall midget and say "you'd be gorgeous.....if you weren't a midget" and expect them to take that as a compliment?  Hell no.

Also, people will use words like “inspiring” to describe everyday things that someone who isn’t 100% able bodied does.  Going to the gym, running, wearing shorts in public with a prosthetic limb.  A truly inspiring act is inspiring regardless of the person doing it, and it’s a word that should be used to describe acts that are in fact extraordinary.  Doing something fairly ordinary doesn’t suddenly become extraordinary just because I have CP.  I mean hell, I ran a 5K race this weekend, my first in 12 years.*  If someone there had somehow found out I have CP and had congratulated me and called me “inspiring” for finishing that would’ve bothered me.  I know they mean well, but it’s still mildly annoying.

My normal isn't the same as what's normal for someone without CP.  It’s not even normal for someone else with CP, given variability of the condition. With that in mind, I've realized how important it is to look at things from that perspective. I also realize how stupid and completely obvious that is now that I'm writing it. I suppose you could say it's a matter of denial vs. acceptance. Accepting that, Zoinks! I have cerebral palsy! Accepting that doesn't mean I'm giving up, or giving in, or being a bitch. Mentally, I think there's a difference between working to appear more "normal" within everyone else's frame of reference and working to better myself from my reality, where my "normal" isn't someone else's "normal."  The latter is a far healthier approach. Frankly, I’m glad I’ve known someone who has come to that same conclusion in their life who could aid me in coming to a similar epiphany.

As another example, for the better part of a year I've been working on trying to walk down steps without reflexively putting a deathgrip on the railing to steady myself. Then, one day recently, I busted my ass on the stairs and thought to myself "this is fucking stupid. I'm going to get myself hurt." I wanted to walk down steps not holding on, because, shit, I don't even know. Because "normal?" Because I was trying to fool myself into thinking I shouldn't have to?

 I tend to have a habit of working out hard, then getting discouraged because I'm not gaining weight, not gaining much muscle, or not seeing big gains. This is the first time where I've been able to sustain working out, and it's not because my body has suddenly changed. No, I've sustained working out because I'm trying not to measure my progress based upon where some able-bodied person tells me I should be. I'm not measuring progress how I expect a "normal" body to respond. Rather, I'm being realistic about how my body responds, accepting that, listening to it, and trying not to be frustrated by it. That means not measuring myself against what I consider "normal."  I feel like I have to work twice as hard to make half the gains. But hey, I can't change that. All I can do is accept that reality and work twice as hard. That means not giving up because I'm not making huge gains or weight gains, nor basing things on how I look. Do I feel better? Hurt less? Am I objectively getting stronger? If the answer is yes then I'm making progress, doing right by me, and measuring progress against nothing except where I was the month before. So far that mindset seems to be sticking and keeping me from throwing in the towel and saying "fuck this." and it has been working for a good while now. 

I'm learning to accept my "normal" and work within it, rather than looking at someone else's able-bodied "normal" and trying to attain that by the means they would use. That's a tough thing to do, but I'm getting there.

*Interestingly enough, I looked up my brother on the race website and found a 5K race he ran when he was 29.  I actually ran this 5K 57 seconds faster than my non-gimp older brother did at my age. Of course even now he could still pin me and beat me up easily :P

Also, since I think each of these CP posts should have photos.  Here's one of me in one of the only pictures I found of my neon green leg braces, also known as AFO's (ankle foot orthosis)


Bubblehead Les. said...

Mike, the only thing about you that I consider Abnormal about you is why you choose to carry .357 Sig.

As for the rest of it, as far as I'm concerned, you're just another Gun Nut like me.

But not as Handsome. ; )

Screw Normal.

NotClauswitz said...

You look like my buddy Baxter, only he has a seizure disorder and suddenly stumbles around in the middle of everything, except when he's on a bike - then everything work OK, really good in fact - he's stinking fast on a bike!
Anyhow I think the green braces are cool, and at least you don't carry .45GAP!

Practical Parsimony said...

My daughter, completely able-bodied, normal never used the bannister on stairs. One day, she caught her foot in the hem of the other leg of her pants and fell, severely hurting herself as she fell from the top step to the landing at the bottom. She frightened her children and limped away from the almost-disaster. Now, neither she nor her children will ascend or descend even a few steps without holding onto the bannister or any railing. As a klutz, I have always advocated for holding the railing. So, my advice to you is "hold onto the railing." There is nothing to be gained by letting go, whoever you are.