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)

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.

Know me where it hurts: sex, kink & Cerebral Palsy

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."

A-Fucking-Men!

My Life With Cerebral Palsy Pt. 7 Surgery – Later Years

In my previous post I talked a little about my experiences with CP and surgeries.   They’ve been a part of my life and while the optimist in me hopes that’s a part that’s past me, the realist in me says otherwise.

Ordinarily you would expect that a kid with CP who had muscle lengthening surgery at 11 wouldn’t make it to 28 without having to have another one, but I managed it.  There are reasons for that, mainly judicious stretching and being an extremely active kid who played sports all the time.  Perhaps I should have had another, perhaps not.  The goal of any good orthopaedic surgeon is to avoid major surgery whenever possible.

So by now you’re probably thinking, if he didn’t have another muscle lengthening surgery, when what the hell is this post about?  Well the effects of rapid growth and muscle  and tendon rigidity on your body and on bones and joints is different for everyone.

In my case the cumulative impact of years of toe walking left me with a mangled , arthritic big right toe, a big bunion, and some ankle problems.  By senior year of high school this had thrown off my stride just enough that I was getting bad knee tendonitis early in cross country season and terrible hip pain.  despite the pain I ran in every single race senior year, but I couldn’t practice.  The entire season was a wash.  I didn’t run a personal best the entire year.  I’d run a race and for the next few days it hurt to walk, hurt to stand in the shower in the mornings, and the coach would forbid me from practicing.

I waited until the end of my Freshman year of college before having bunion surgery to deal with the pain I was having.  Ladies, having experienced the pain that comes with bunions and the corrective surgery I don’t know why you bother with high heels.  A crappy surgeon will just lop off the protruding bunion but what really needs to be done is to fix the toe joints, straighten out the toe and lop off the protruding bunion.  They will often times fuse some of the big toe joints as well.  Another thing that will happen is that as the big toe turns in it puts pressure on the joints of the toe next to it.  I never did have surgery on that toe, but I do have bad arthritis in it now.

I know they did something else in addition to a bunionectomy and fusing my big toe joints, and I have a smaller, second scar on my right calf to prove it, but I can’t remember what the surgeons did.  I’m sure they cut some muscle or tendon somewhere that needed spasticity relieved.  I’ll be honest, these leg surgeries kind of all meld together in my mind and I’d be shocked if I didn’t muddle up details a bit.

I honestly don’t recall all that much from this surgery, which more than likely means it was relatively easy as far as surgeries go.  I can remember having a huge, below the knee walking cast on my right leg, and a piece of metal in my right big toe that, funny enough, looked to me like I had a large paper clip sticking out the end of my toe. 

I still have hip pain, and yes, that damn toe still hurts some times.  I’m also, slowly but surely growing another bunion on it, but like before, I had a problem and I got it fixed.  Easy peasy.  If at some point in the future this foot needs another surgery, then I’ll tackle that.

Somewhere around the time I had the toe surgery, maybe even the year after the bunionectomy I also had surgery to pull some old hardware out of my right foot and ankle that had been put in their during my 1996 surgery.  I had been having issues with my ankle joint popping, snapping, and completely locking up on me.  So the summer before another year of college I decided to go under the knife, have them yank out the hardware, and send me on my way.  Simple right?  I was in my late teens and this was the only surgery I’d ever had done by someone other than Dr. Miller.  I don’t know who the guy was, but whoever he was he decided to give me something like  100 oxycodone for what was a cakewalk of a surgery.  He also gave me the nastiest scar anywhere on my body, and at the end of it all my ankle was exactly the same.  It’s no better now than it was then, and still locks up on me.  Oh well, these surgeries are a bit of a guessing game anyway, and no one bats 100.00

  I’ll never forget a few years ago, I’m sprin ting down the beach with Zack, there are some attractive young ladies walking our way, and just as they’re passing by my ankle locks, I pull up, awkwardly try catch myself, and instead faceplant at full sprint speed into the sand, and the dog looks back at me like “Dude, really?!”  To this day It amuses me, because shit, if I can’t laugh at myself, then who the hell can?

That’s it, those two simple surgeries were my last “leg” surgeries.  This is actually highly unusual for someone with CP, given the spasticity issues we encounter.  Dr. Miller was always a huge proponent of my doing anything and everything I could to delay surgeries.  I have my own suspicions as to why I was so lucky as to not ever need another major muscle lengthening surgery on my legs, but that could be encompassed in another CP post entirely.  As it turns out, I would have one more major surgery that I don’t think Dr. Miller, myself, or my family ever saw as a potential issue.

As I talked about in earlier posts, both bone and muscle growth are impacted by the spasticity inherent in having CP, and around age 18 my body had one last little growth spurt.  One of the places it decided to grow was in my lower jaw bones.  I ended up with an underbite that I could stick a portion of my tongue through.  Yep, you guessed it, it was time for another surgery.

First I had a set of braces put on which did not correct the problem, and then went to see a maxillofacial surgeon.  I can still remember standing there with my father, as the Dr. was holding a skeleton all of the cuts he would make in the upper jaw to realign my bite correctly and the titanium plates and screws that would need to be installed.  I was standing there going “this sounds pretty cool, lets fix me up” and my dad is cringing and continually asking me “are you sure you want to do this?”

January 16, 2006.  That was the day I went under the knife.  I remember because  my sister was in labor with my her first kid, my nephew Jake.  He was born right about the time I woke up from anesthesia. I look at my jaw surgery as kind of a jigsaw puzzle.  They slice up the bones in my upper jaw, move all the pieces forward, line everything back up and then bolt you all back together again, like humpty dumpty.  I also opted to have polyurethane  cheek implants put in based on the surgeons advice.  He explained that without them my face may look sunken in after everything had been moved its new spot.  So I had plastic surgery while they were in there, if you want to call it that.

My understanding is that they are extremely rough with your face during this kind of surgery.  There’s a saw involved, hammering and chiseling  as well as a good deal of brute force.  The surgeon makes incisions at the very top of the inside of your gums and…..folds your skin up off your face so he has room to work. Apparently it showed, because I can remember a few folks who came to visit me crying when they saw me.  Oh, and people didn’t want to let me look at my face.  I must have looked like I got hit by a bus, which is to say, still significantly more handsome than Mayor Bloomberg.

I’ll always remember getting wheeled out of the hospital.  My dad was waiting at the curb and I didn’t want him to see me wheeled out to the car, so I had them wheel me near the entrance and then I walked out to his car and hopped in the front seat.  Dad, who hadn’t seen me at all post-surgery, just kept looking at me, shaking his head, and saying “oh my god” over and over again while admonishing me not to talk when I’d mumble that I’d be fine.  It’s odd the things you remember and the things you don’t.  I don’t remember much of my hospital stay after jaw surgery (this is good, means it went smoothly I guess) but I remember Dad picking me up and the exchange we had.

I would say I made the right decision.  My bite, while not perfect, is far better than it was, and looking at me you’d never know I had major reconstructive surgery on my face, nor is it obvious that I have cheek implants.  Aside from my right foot being turned too far in during one surgery, I don’t regret a single one of my surgeries.  They taught me a lot about life, about taking things one step at a time, and pushing through pain and frustration even when sometimes all I wanted to do was give up.  You learn that no matter how bad shit gets, wounds heal.  Things get better, so be resilient.  Deal with what needs to be dealt with, push through it and get better, so you can get back to kicking ass.

Besides, one thing I’ve learned during my life with cerebral palsy is that the surgeries are the easy part.  It’s the post surgery recovery where the big dude in the sky really tests you.  If you’re wondering what the next post(s) in this series might be, well the sentence preceding this might give you a clue.  I think that’ll be less dry and technical than this post as well.

I am sitting here, about to hit publish on this long languishing post, and my surgically repaired toe is throbbing.  This must be some kind of karmic justice for daring to write a post about my surgeries.  Heh.

Have a wonderful Memorial Day Weekend everyone.

Getting Older, Getting Smarter

In this post I referenced an instance at our Holiday Luncheon for work, where I stubbornly tried to carry the case of beer I got as a gift down a flight of stairs, fell, and very nearly broke all the beer.

At this years Christmas luncheon my boss also gave me a case of Dogfish Head 60 minute, and I at least had the good sense to suck up my pride and say "I need help"

Still, even though I know I can't do it without help, I still feel like a schmuck handing a case of beer to a woman 20 years my senior because I can't carry it down a total of 10 steps.

On another note, I've noticed of late that if I try to stand on my weak leg and balance I can actually do it for at least long enough to start counting.  Back when I was getting physical therapy from the students at UD I honestly couldn't stand on my right leg for more than 2-3 seconds before I'd fall over.

My Life With Cerebral Palsy - Part 6 - Hooray Balls!!

In this post in my CP series I said this,

"I know there was a funny pic of me covered in bulky electronics and a bunch of shiny balls during a gait analysis (on a polaroid nonetheless) but I can't find the scan of it."

Well I ran across the pic and it was in fact, a polaroid!

Basically, every so often growing up I'd go to the gait analysis room at AI hospital, they'd put me in these super goofy hospital shorts, hike em' way up, shave me and then cover me with a bunch of electrodes and shiny, sticky balls.  The purpose was to analyze my gait (har har! :P)  I look at this now and think "Wow!  Look at how bulky the electronics are!"  Then, once that was all setup they'd have me walk, filming me from the left side, then right, then from the front and from the back as I walked.  Then we'd do the same thing only running.  God I remember it was always freezing cold in there!

I always found watching the videos to be quite interesting, since you really don't realize just how poorly you walk until you see yourself on video. I was thinking about my gait analysis last night while running at the gym.  When I run on the treadmill at the gym I'm in front of the mirror and it's odd to be able to look at my running stride.  I pronate like crazy, knee turns in, my right foot slaps and turns so far in it looks like it has a mind of it's own and is trying to trip the other foot.  Basically, it's the least biomechanically correct stride imaginable.  No wonder I wear all kinds of odd angles into the soles of my shoes!


I used to have a specially made orthotic that the guys in the cast room made for me in High School when I was running cross country.  It was meant to help with shock absorption and most importantly to keep my right foot in line so it wouldn't turn in quite so much.  I really should see if I can get something like that made again.

Despite the title no Red Stripe was consumed during the writing of this post.

My Life With Cerebral Palsy Pt. 5 - The Word "Can't"

I'm 27 years old now, and I can honestly say I haven't spent a great deal of time thinking about the things I couldn't do.  In fact, the word "can't" wasn't used much, either by myself or by friends and family growing up.  There were things that were difficult, lord knows there were things that were frustrating, and of course things on the "probably not a good idea" list, but very little use of the word "can't."

Why do I bring this up now?  Because while out at a Firm luncheon a while back I had a minor incident that made me think about such things.  One of the attorneys gave me a case of Dogfish Head 60 Minute IPA as a gift.  So, here I am at the end of lunch, standing at the front door trying to figure out how I"m going to get down the steps with a heavy case of beer.  I initially tried and nearly wound up tumbling down the steps and wasting all of that beer.  Thank god I didn't, because the only thing more embarrassing than having to suck up my pride and ask for help would've been tumbling down a flight of steps in front of everyone I work with.  I've tumbled down plenty of stairs before, but this was one that would've been hugely embarrasing.

Pride is a weird emotion.  Anyone reading this who has a "disability" knows that asking for help is one of the last things you want to do.  In my case, well, I went years at The Firm without telling anyone I have CP and anyone who did notice my limp or other oddities likely just dismissed it or chalked it up to an old sports injury / bum knee and never said anything. I certainly wasn't going to say anything.  Why would I?  Prior to my panic attack in April of 09' almost no one knew about it.  (I figured it was a medically relevant thing to tell the EMT's as they wheeled me out of the office.)  Hell, until recently (I.E. starting this blog) I almost never talked about my CP unless prompted to do so.

This past weekend at the beach I was stretching with my brother and 8 year old nephew, preparing to go for a run into town.  He laughed and asked what I was doing, because compared to him my stretching looked odd.  So here I am explaining CP and tight muscles to an 8 year old, realizing that I've never used the words "cerebral palsy" with any of my nephews or neice.

It sounds so cliche' to say you just want to be seen as "normal" because no one's really normal.  Look around you.  People are fucking weird.  That said, the desire to be seen as "normal" with respect to not needing help from others can be a bit ridiculous when you have any kind of physical disability.  You develop an overinflated sense of "I don't need help" even when you clearly do.

To this day I have trouble asking for help, and it's clearly a product of childhood. (It's also genetic, we're all stubborn as hell) My parents went to great lengths to make sure I was independent, mom moreso than dad.  My older sister would step in to help me do things, mom would stop her.  There were all kinds of day to day things I had trouble with, and so, so many people who were all too eager to jump in and help at the drop of a hat.  I can remember zippers and snaps on winter coats being especially frustrating.

Frankly, I'm glad my parents made me do everything by myself, and really didn't try to stop me from doing anything because of my CP.  My father did try and keep me from joining the basketball team as a kid because he was worried I'd get hurt.  (incidentally, you couldn't keep me off a basketball court and both of my concussions occurred in schoolyard pickup games) It's funny, growing up dad was definitely more of a hardass, yet he was always the worrier, while Mom was the "Ah, he'll be fine!" type.

My parents didn't coddle me and shield me from life, adversity and challenges and for that I am forever grateful.    I can only think of very few times where I pulled the "I have CP card" to try and get a leg up.  One was in typing class.  I didn't want the class to negatively impact my good grades and was understandably worried because of my right hand.  The school told me I didn't have to take it if I didn't want to.  I took it, got a "B" and can now type just fine. Once was to get a date with a very nice girl who insisted on helping me off the university bus. The only other instance was when I got a handicapped placard after surgery in college, to reduce the amount of walking I'd have to do all over campus.  This really was a necessity, and even with it I way, way overdid it. Yes, I even tried playing basketball in a leg cast.  After the placard expired I never could bring myself to renew it, even though I do qualify.

I can't tell you the number of times I did something foolhearted because "I don't need any help."  When I moved out of my dorm room senior year two of my "friends' ditched on me, so I decided to do it myself.  I took a tumble down an entire flight of concrete stairs while trying to carry my fridge out. I laid there for a while and It was sheer luck I wasn't seriously hurt.

I do it with non-physical things as well, because I've developed this stubborn belief that I should be able to figure things out on my own.  I had to write a legal memo for class last semester.  I had everything I needed, knew it inside and out, and my only hangup was that I didn't know how to format / structure it, seeing as I'd never done this before.  I had the same issue writing pleadings for my civil procedure class.  10-20 minutes of just sitting down with a lawyer, bouncing ideas off of them and going "Am I on the right track / doing this right?" is all it took, yet I refused to use the resources at my disposal to my advantage.  As my dad said to me "The problem you're having is the same problem I had when I first started law school.  It's normal."

I guess you could say there's a fine line between wanting to be autonomous and admitting that, yes, you DO need help with certain things, and furthermore, that it's OK to ask for help. Growing up I remember having winter jackets with snaps because zippers were more difficult for me.  I remember for years flipping my backpack up over my head because I couldn't put it on the normal way. Even now I have days where I have trouble with my tie and the buttons on my shirt.  Days where my hands just don't want to work well.  I'd rather spend 10 minutes with the one damn top button or button on my collar I can't get than ask my roommate to get it.  Just like I'd rather beat my head against a way forever trying to figure something out for class than ask for 15 minutes of help.

It's literally taken me years to get to the point where I'll at least sometimes ask for help, favors that I view as imposing, or say "yeah, with my CP I think doing that would be a really bad idea without help" I can't say how many times I've fallen, even in my 20's, because I was doing something ill advised that involved height and balance. I know I struggled through some things in the mid 2000's that Laura would've beat me over had she known about them at the time.

There are times where it's OK to take a step back, realize you don't have to prove yourself to everyone all the time, and either ask for assistance or refrain from doing certain things.  It's taken me all this time to realize that doing so doesn't necessarily mean you're wimping out or not pushing yourself.  It means you're getting older and maybe, just maybe, a little smarter.  Still, even though I now realize this it's really quite hard for me to actually do it.

My Life With Cerebral Palsy - Part 4 - This Is Not a CP Post

In leiu of writing a long CP post here I thought I'd post a few pictures.  These are from 1996.  Maybe I'll actually get a post written that I think is half decent at some point, maybe not.

The casts I had were always walking casts, because the docs needed me to at least try and get up out of bed, on my feet and walking as soon as possible.  I know there was a funny pic of me covered in bulky electronics and a bunch of shiny balls during a gait analysis (on a polaroid nonetheless) but I can't find the scan of it.

My Life With Cerebral Palsy - Pt. 3 - Surgeries - Early Years

When you grow up with CP, surgeries are just a way of life.  Surgery, recovery, physical therapy.  That's how the cycle goes.  You fix the problems as they crop up and you deal.  I realized recently that I'd never really written anything about my surgeries beyond a simple "hey, here's what I'm going into surgery for" and a "hey, I'm out, I'm still alive."  So, here's my attempt at chronologically documenting those experiences.  It might not end up being that interesting, but I'm writing this for me, not you.

As you'll recall, CP creates excess spasticity / rigidity of muscles.  As I grew up that meant surgery to relieve both the spasticity and other issues like bone deformities.  I believe the technical term is "muscle lengthening surgery."  In layman's terms, what the orthopaedic surgeon does is cut the muscle, stretch it out and then sew it back up.

Every few years as I grew up I had to have these surgeries.  I can't say how many surgeries I've had, because honestly I'm not that sure.  five or six maybe?  I know the first surgery happened when I was still a blue eyed, curly white blonde haired toddler in the 80's.  I don't remember anything from that surgery and I believe it was the only one in which my quadricep muscles were cut.  Those cuts are by far the worst two scars on my legs, and part of the reason I either didn't wear shorts, made sure they long growing up.

I think I had muscle lengthening surgery in 1992 but again, I don't recall much of anything from that surgery.  The only thing I can remember were the yellow and maroon casts.  If memory serves me right they would have done the muscle lengthening surgery on both sides of my groin muscle, both hamstrings and both calves.

The first surgery I do remember was in 1996.  This was, I think, my last major muscle lengthening surgery.  At the same time I had bones in my right foot and ankle cut and the foot turned inward to improve my gait.  If you look at me walk today you'll notice that my right foot turns inward quite a bit.  This is why.  It was turned in with the expectation that it would gradually straighten itself out.  That didn't end up happening, but then these surgeries are always a bit of a guessing game.

I remember quite a bit from my surgeries from 1996 onward, but the timeline and which events occurred when tends to be hazy, which is a large part of the reason why I've put this post off for so long.

1996 was, in my opinion my toughest surgery.  I'd had surgery on both my muscles and the bones in my right ankle, and they had to cut my right achilles tendon to relieve the spasticity.  To this day I have very little strength in that foot, can't push off much at all, have limited range of motion, and tend to slap that foot when I walk. My roommate and I are working on improving that in the gym, and I'm working on walking more correctly.  I can do it when I concentrate, as he consistenly reminds me.

That year, 1996 I'd gotten a $5 buzz cut on base because I thought that was "cool" and my favorite hockey team, the Colorado Avalanche had won the Stanley Cup.   Joe Sakic, Peter Forsberg, Patrick Roy.  If you watched hockey back then you remember.

I recall they made me drink this terrible stuff to calm my nerves.  It was supposed to be bubblegum flavored but it was awful, wretched crap.  It did however, make you not remember actually lying down on the operating table as the anasthesiologist put you under.

What I do remember was waking up.  I came to, leaned my head sideways and promptly threw up.  Nausea is normal, since they pump you full of as much morphine as your body can handle, but this wasn't morphine induced.  I had a bad reaction to the type of anasteisia used and probably wretched 30+ times.  This isn't good since every muscle in your body tenses up when you puke, including the ones you've just had surgery on.  I couldn't keep anything down until the anasteisia was completely out of my system.

For some reason when I think about the pain I remember alternating between the kind of searing pain you never forget and feeling completely numb from the waist down like my legs weren't really there even though I could see them.  Morphine, and that little red button, by the way, are amazing.  The ungodly itching is not so great. They pump you full of benadryl, but it's still terribly itchy.  Not being able to use anything from my waste down made for a very frustrating and embarrasing hospital stay.

One night I ran out of morphine.  I woke up in the middle of the night, hit the little red button and... nothing.  The nurse heard my screams, came running and we waited what felt like an eternity for a doctor to show up.  He shot a bolus of morphine into something attached directly to my lower back / spine and the pain subsided.  They say pain sears things into your memory, and they're right.  I've never forgotten that.

That's not to say I don't remember good things about my surgeries.  I remember friends and family coming to visit, my sisters laying in bed with me for pictures, and us all driving remote control cars around my room and down the hallways.  I remember my sister's husband and my siblings "borrowing" my wheelchair and having races in the hospital.  I'm sure the hospital staff loooooooved us.....

Mostly though, surgeries just suck.  They are what they are, just a thing you've got to do, but the reality is they still suck.  I always had an independent streak as a kid. As an 11 year old who could now not get out of bed, nor even shit or piss without direct and uncomfortable "assistance" from nurses, the overwhelming feeling I had was one of frustration.  I think that was always the most difficult thing, not the pain.  Well....that and the post-surgery recovery. (which would probably be a more interesting post than this one)

I could talk about recovering from surgery, PT, Stretching, what school life was like with bright green leg braces and / or being confined to a wheelchair, but such things will have to wait for another post.  One memory that immediately comes to mind is the time after the 96' surgery where I was carried & dragged out of the house on a comforter to be driven to the ER in the middle of the night.  Fun times.

I would have 3 more surgeries in the 2000's, although only two of them were major. The other surgery wasn't even done by my regular surgeon, and all they did was put me under, cut me open, shave off some bone and yank some metal plates and screws out of me.

I'll talk about those in the next post.  Hopefully I'll get that up sometime soon unlike this one, and I suspect my memory of those surgeries will be far better.  This post has been sitting here far, far too long because it was unfinished and I was unhappy with it.  Oh well, I think it's time to finally hit "submit."  I mean, it's here, I may as well post it, right? :)

My life with Cerebral Palsy Pt. 2 - Working out

When I started my New Year's Resolution back in January one of the first things my roommate asked me was what limitations I had.  He seemed genuinely concerned that there'd be things I couldn't do or that I might get hurt.  You get this a lot when you've got any kind of physical disability.  I had to continually tell DP not to worry about it.  "Treat me like any other person, and we'll find a way to work around any issues that might pop up," I said.

I think it's basic human nature for most people to want to limit you from the start out of a genuine sense of caution and concern.  I'm really not the least bit offended by this unless they're persistent and / or rude about it.  Hell, I know I've been guilty of it myself with others.  I honestly think it's a result of the other person being somewhat uninformed about your particular disability and / or overly concerned with your well-being.  Had my father gotten his way I'd never have played organized basketball growing up because I might get hurt.  He wouldn't have had any luck keeping me off a basketball court, and ironically my two concussions were suffered in inpromptu pickup games.

I'm usually at the gym 4-5 times a week and if I happen to skip on a particular day I'll alternate several different triceps & biceps exercises with pushups (100 minimum - total) followed by abs.

Truth be told there have been some issues that have cropped up as things have progressed. Because of poor balance I have to be extra careful when picking up / putting down weight.  My bum right ankle gives me issues doing squats, and arthritis in my joints, particularly my knees, hands and wrists is a constant source of frustration.  Since my right side is tighter I have problems getting into the correct position or getting proper full extension with my right arm.  Grip strength in that hand remains an issue. In short, sometimes my muscles just won't do what I want them to do. I work through those issues and adapt, just like I've always had to do.

 That said, I'm in pain regularly as it is, only now at least I'm getting something out of the pain. There are some exercises that I haven't tried yet because I'd rather not get hurt and my CP makes that more likely. I don't do any free standing squats with weights for example, since given my balance issues that'd be a great way to injure myself.  For the most part though, I've been able to do whatever exercises we've tried provided they didn't require significant balance.

Two of the major components of CP are muscle fatigue and weakness.  I'm simply starting from a point where I'm weaker than I'd be if I were a completely able-bodied 25 year old man.  My muscles are also going to fatigue faster when I push them.  I can't help that, all I can do is push my body past the point where it gives up and cries "uncle."  If there's one thing I know well it's pain, so pain from kicking my own ass doesn't bother me.  Mind over matter, if you will.

I'll admit, I tend to get frustrated about not seeing results to the extent I expect.  I think sometimes I give myself unrealistic expectations. I've gained about 15 pounds so far, and while I wanted to gain 25-30 by now 15 is still a lot of weight for me. The fact of the matter is that muscle growth depends on the stretching / contracting and breakdown / rebuilding of muscle tissue.  Since CP directly impacts the ability of the muscles to do such things it makes gaining muscle more difficult.  Since my right side is impacted to a greater extent and is already behind it becomes a real challenge to try to even things out.

I suppose I just need to stop being so damn critical of myself and instead just work my ass off and let my body respond however it's going to respond.  My goals coming into this were to get stronger, feel better, and gain weight.  I've accomplished all three of those to at least some extent.  If my chest is a little uneven or my left calf is twice the size of my right then fuck it.  I'm probably hypercritical of myself anyway.

Hey, if I can go from concentration camp victim skinny to actually having muscles in the span of 5 months then so can you, so quit making excuses and start kicking your own ass today!  You'll feel better once you do.  Trust me!

*This is a series of posts.  See part 1 here.

My Life With Cerebral Palsy - Introduction

I've brought up the subject of my cerebral palsy less than a handful of times on this blog and perhaps as many times in three years of writing on Livejournal before that. It's not that I tried to hide it or was ashamed of it or anything of the sort, rather I just rarely felt the need to bring it up. This is true both in my writing and in my day-to-day life. 99% of the time it's just not relevant to anything and I see no reason to say a word about it unless someone asks. That said, here we are, I feel compelled to write about it, and this is my little corner of the internet, so here goes nothing.

Cerebral Palsy (abbreviated hereafter as "CP.") is not a disease, it is a musculoskeletal condition generally caused by brain injury of the fetus before, during or after birth. In my case it was a result of being born premature and weighing less than 4 pounds at birth. My lungs were underdeveloped , causing a lack of oxygen to my brain, brain damage, and wa lah, cerebral palsy. Yes folks, I technically have "brain damage" and yet I'm not an ardent anti-gunner. Wrap your heads around that one.

Because CP is caused by brain injury at birth or shortly thereafter it's effects and extent aren't usually known right away. Because different areas of the brain can be affected the types, subtypes and symptoms involved can vary greatly from person to person. People sometimes think of CP and think of someone in a wheelchair who needs constant care. While this certainly can be the case depending upon type and severity of the condition, it is not the norm.

I have a very mild case of the most common form, which is spastic diplegia. Essentially this means my lower body is primarily impacted while my upper body has hardly any extra spasticity at all. Additionally, my right side is affected more so than my left. Incidentally, I've tried pocket carrying the 432pd on my right side, but I just don't have the coordination and fine motor skills needed to safely draw and fire from my right pocket.

In layman's terms, what occurs with this type of CP is simple. The spasticity / rigidity of the affected muscle gets worse as one grows, since the rigidity increases as the bones attached to those muscles grow. Once I reached adulthood this was no longer an issue. however, the cumulative impact of that muscle rigidity during my younger years and the permanent rigidity I'll always have means that CP related symptoms and complications (hooray arthritis!) do get worse even though CP is not technically degenerative.

One of the more interesting things about CP is that no one really fits perfectly into one type of the condition, and as a result no two people have exactly the same symptoms. While my primary issue is the hypotonia characteristic of spastic diplegia, I also have secondary issues with balance, strength, coordination and fine motor skills. Trust me, all of that sounds far worse when I write it down than it is in reality. You adapt to your shortcomings, find intuitive ways around the little things that cause you issues, and when shit breaks you get your ass under the knife, work hard and get back up and running ASAP.

The things I've gone through in my life have always seemed far worse from a 3rd party perspective than they have from my own. I've noticed this even within my own family, with my big brother and I discussing my "tough life" a few years ago. I consider those life experiences a good thing, as they've shaped me into the person I am today. I've never quite understood that 3rd party perspective. Given what so many others less fortunate than myself have had to endure I'd say any hardships I had were trivial by comparison. I've been incredibly fortunate and my life has been anything but "tough." I guess that's a matter of perspective, just like everything else in life.

This post is intended to be the first in a series of posts. I realize that it's a bit dry and technical, however I felt like a discussion of what CP is was integral to posts going forward. Subsequent posts should be more interesting(or not, depending on your perspective) and more personal. Ultimately I'm writing about this topic because it interests me and it's my blog.