Normal Is Nice

Fall means a season of follow ups, and usually a mix of emotions.

The emotions are still there, but I’ll get to that later, or not.

The follow ups are still there, and they will be for the foreseeable future, but they’re different.

I was sitting in an exam room waiting, actually I was staring at the sink, when I thought of a poem.

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Yes, I was waiting a long time. Yes, I do get philosophical the longer I wait.

I remembered waiting to be told I had healed enough that I could stand up, and then feeling pain shoot up my legs as they took on my body weight. It was pain, the very reason why I put myself though all of this, but it was different pain, and I was happy about it.

As the weeks of rehab turned into months my feelings towards standing went from happiness to anger, as happened in every stage of my recovery process.

Every follow up I’d wait, and wish someone would find something that would make me better, a more improved version, faster.

That never happened, at least not yet. And no one ever declared me “recovered,” not officially, that came with some self-acceptance.

I sat in the exam room, again, but with a different expectation.

The expectation of normal.

“Normal is nice,” I kept thinking.

And it was, the follow up went as I expected, and I wasn’t upset or overly happy over it.

It was normal, and it felt nice, to be OK with this (not so) new phase of my life.

Regardless of how you feel about standing, normal is a nice place to be.

Defining normal, that’s the hard part.

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“She’s A Really Good Swimmer”

Two cousins gave me my first swim lessons, basically by letting me fend for myself & pulling me up for air occasionally. Summers were spent in the pool so that’s where I wanted to be. It didn’t matter how I got in there. I’ve never been the biggest fan of lifejackets so I learned to swim early and often.

“Did you hear that Michael Phelps has wicked ADHD & the only way he could focus was under water because he couldn’t hear anything.”

Whether that’s true or not for Michael Phelps I can tell you it is true for some. Go jump in a pool, stay fully submerged, and then look around. What can you hear? Not much. Swimming is as simple as it is complicated, swim to the “X” at the other end. It’s pretty close to perfect as far as focal points go, especially if you’re looking for ways to block people out.

I don’t talk about it often but I was bullied in school, most notably grades 5-8. I was the new girl in the world’s smallest class, I’m also different from your average person, and girls can be relentless. I could hear people whispering and I knew it was about me so I did what I always did. I pretended I couldn’t hear them.

”She’s a really good swimmer”

I had met two of my classmates the summer before school started in the pool of the club our parents belonged to. I had hoped we’d become friends once school started, no such luck, but they acknowledged I was good at something.

I was around 11 by the time swim lessons involved swimming full laps. My first lesson was pretty exhausting but by the end of the swimming “term” I was able to keep up with the class. It was breaking through a glass ceiling for me. I was finally able to swim full laps, the catch is, in my mind that meant being “old enough.”

As soon as I could swim full laps I had a friend teach me how to do a flip turn and practiced it endlessly. We’d turn on the flood lights & go swimming at midnight in my aunt’s pool when we couldn’t sleep. I wore one piece racing suits & swim caps. I was ecstatic when my aunt agreed to buy me my 1st pair of mirrored goggles. I was just as heartbroken when I lost them over the winter.

I hated the words “adult swim” because the adults were allowed to swim laps only, and that’s all I wanted it do. I watched the swim team from afar every year wishing I could wear the same blue racing suit.

I read Andi’s love/hate relationship with her daughter being on the swim team.

It stirred up some feeling, mixed ones at that.

One summer I asked my mom to ask “Coach” if I could try out for the swim team (I was too intimidated by him to do it on my own), maybe practice with them a few times if he thought I wasn’t ready. I knew I probably wasn’t as ready as he would’ve liked but I knew he could work with me.

He had said “No.”

He knew he wasn’t going to let me join the team no matter how well the tryout went so he didn’t see the point in my trying.

I was crushed. If he didn’t even want me to try out I guessed I wasn’t a swimmer at all.

“Coach is a jerk. You wouldn’t have had a good time on the swim team anyway.”

It took a wise all-knowing high school aged babysitter to help me get past it, because when you’re in middle school high schoolers know more than your parents. She had also known “Coach” longer than I had and had friends survive life on the swim team. She was also the one who helped me survive the girl-piranhas. Her opinions were more than valued in my house.

I get where Andi’s coming from.

It’s hard to watch someone come in last. I often watch World Championships & even Olympics where someone comes in not just last, but painfully so. I use to wonder why someone would allow such an embarrassment for their country. One day while watching a race it hit me, like a ton of bricks.

This is the biggest stage anyone can compete on, ever. No matter what happens they made it this far. That in itself is an honor & deserves to be respected. Sometimes “just showing up” does make a difference. And just like someone has to come in first someone has to come in last. It’s one of the not so fun aspects of life.

I understand Sarah Kate all too well.

She’s having fun with her friends, and probably making a few new ones. She’s not she-who-has-cerebral-palsy is having fun with her able-bodied friends. She’s having fun with her friends.

That’s enough. In fact, that’s plenty.

Coming from a girl who wasn’t even allowed a tryout

Just knowing Sarah Kate is allowed to compete makes my loss not feel like one any longer, it’s a sign of progress.

Although it would be nice to find that coach after all these years and show him what I’m made of.

*A similar version of this post was written on August 9, 2012

Acknowledging Your Personal Puzzle

There are a fair number of analogies of what it’s like to live with a disability, I find some more accurate than others, but countless people disagree with me, which is why there are so many analogies.

There’s also something to be said for basic language around disability, person first, identity first, whatever.

There’s so much to be said about so many topics that divide the disability community but I think I’m starting to find a common thread in all of them.

The path to self-acceptance or one’s own disability.

While I sometimes forget I have Cerebral Palsy, it took me a while to accept the fact that I had Cerebral Palsy, and that it did in fact inform every aspect of my life.

Once I figured that out I thought my life would get easier, at least somewhat, mentally, but it’s not really like that. It can actually be hard to be conscious of how your disability is integrated into your everyday life, especially if you find yourself thrust into the world of activism.

At what point do you highlight your disability, especially if it isn’t visually obvious?

How do you identify as disabled?

To what extent do you bring attention to your disability?

The Cerebral Palsy community is an interesting one, for various reasons, but not limited to how much a person allows CP to be part of their life. It’s always a piece of the puzzle, but the size of the piece is the question.

Some get to make the choice, others don’t, to some extent.

Making the conscious decision to embrace it, and all the opportunities that come your way because of it is a completely personal decision.

As someone who didn’t embrace their disability until their 20s I wonder just way I waited so long. I’ve gone back in my head wondering what and/or when I would’ve done something differently multiple times and I can’t come up with and I can’t come up with something, anything, that I would willingly change.

I guess that’s one of the pieces of my own puzzle.

Cerebral Palsy Awareness Day

I’ve made no secret that I’m not the biggest fan of awareness days, yet I feel obligated to participate in them. Tomorrow is National Cerebral Palsy Awareness Day in the US, not to be confused with World CP Day which occurs during the fall.

Last year there was (finally) a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

I’m not one to keep up the daily goings on of the senate, or any other governing body, so I don’t usually read official documents, but I read the resolution to see what it entails.

S.Res. 400 is a bit of a disappointment, unless I’m misunderstanding the purpose of senate resolutions, and if that’s the case someone please feel free to explain it to me.

All it says is what we already know, or information that can readily be found during a basic internet search.

I was hoping for something more, even just a little bit more.

I know the government is deeply divided but if this has become standard operating procedure in order to get our elected officials to agree to known facts than maybe we need to reexamine how things are run and who we are electing to run things.

So the government needs to agree that a condition that’s been around for 100s of years before agreeing that it needs recognition. Does this not sit well with anyone else, or is it just me?

We have a resolution that says tomorrow is National Cerebral Palsy Awareness Day. But what does that really mean? More importantly, what comes next?

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*A similar version of this post was written on March 25, 2016

Owning It

After all my thinking I’ve come to a realization.

I think.

And it wasn’t even a result of all the thinking.

Instead a statement from the oddest of places.

“I can’t believe I get to live in this body”

You could practically hear my brain scream “THAT’S IT.”

I can’t believe I get to live in this body.

Not

I can’t believe I have to live in this body.

Which is pretty common statement when you have CP, because if your body doesn’t always do what you want it to do it’s not always your favorite thing and you resent it every once and a while. It’s a part of poor body image that no one ever considers; your image is poor because your body is often at times, well, poor.

Anyway.

It’s not that I had a poor self-image, other than the teenage years and whose self-image is great at that time anyway, but there were times I wished things were different. Mainly why I wasn’t naturally gifted at most things that interested me. I didn’t want to work as hard as I had to to do anything, which included working out.

I knew what I had to do to maintain function. I’d been told it countless times. I didn’t listen. I didn’t want to. I didn’t care. I wasn’t like all the other people I’d been told about. I was different.

I was in denial.
(Am I saying that I spend 20+ years denying that I have CP? Probably, yeah.)

Then I had my wake up call.

And rolled myself off to fix my mess.

Part one was surgeons.

Part two was all me.

And I thought I knew how it was all going to go.

I may talk a big game but I’m still in the early stages of figuring this all out.

I thought I’d recover from surgery, just like I have from all of my other surgeries, and return to some sort of status quo I’d been living with, and hope I’d have a good chunk of time before I had to repeat the pattern.

Because that’s how CP works.

WRONG.

I felt (and still do) so different with my new hips. I have my good (when I could tell my jeans wouldn’t fit) and bad days (when my jeans didn’t fit) with them. At first it was difficult to adjust to them. My brain recognized the correction but often couldn’t get it together to work with it. Even though it was/can still be frustrating it’s amazing.

I’ve come to a level of acceptance that makes every day fun in some aspect.
”Let’s see if I can do this.”

Some days I do.
Sometimes it takes more work.

It’s O.K.
It’s me.

I’m still in shock that this body is mine.

It’s really cool.

Work with what you have & own it.

Keep raising the bar.

You’ll keep surprising yourself.

*A similar version of this post first appeared on an old blog on February 25, 2011

3,000 Words

They say a picture is worth 1,000 words, so this post will be 3,000+ words.

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Why do these pictures illustrate my health focus? Because there are still numerous unnecessary obstacles for persons with disabilities but there are countless people trying to change that, including myself.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

No Hope For A Cure

I don’t hope for a cure for Cerebral Palsy. I’m not saying that there is no hope, that one can’t/won’t be found. I don’t hope for a cure because I like who I am. Chances are there will be a cure found at some point, and probably sooner than we think. And that’s O.K, I guess.

I’ve always known I have Cerebral Palsy. I didn’t find out what that in fact means, for real, until a few years ago. I’ve always been uncomfortable with the idea of being healed or cured for as long as I can remember.

It always threw me off when teachers and other parents would call me a wonderful child and then they’d turn around and suggest to my parents that they should take me to some kind of healer. If I was so wonderful than why did I need to be healed? I understand that things aren’t so black and white now, but these were not conversations to be had in front of a child.

Do you know the story in the Bible when a man goes up to Jesus to be healed and people ask him, “How has he or his parents sinned for this to happen?” (That’s the story more or less). I’m not for defacing books, but I’ve always wanted to rip that story out and act like it was never there to begin with. I get the point of the parable; it just dances on my last nerve when I hear it.

God, or whatever you believe in or not, made me this way. God doesn’t make mistakes, right? So what’s to heal or cure?

There were difficult times in my life, probably more than most people have, if you add in all the medical stuff. Do most people feel bad that I had to go through it and I’ll probably continue to? Sure. But here’s what none of those individuals will ever understand, I wouldn’t change I thing for one simple reason.

I am who I am today and will continue to be because of how I’ve lived.

As Jack Morris once said, “Our human task, if you like, is to not flee from the ill-being but to transform it.”

Here’s an idea I’ve had recently that you may have never considered. I know what my shortcomings are, well most of them, without having to think about it too much. I have a disability called Cerebral Palsy therefore my balance isn’t awesome, anything requiring that I have great balance isn’t for me. Neither is anything that requires me to be on my feet eight plus hours a day (that’s a mistake you only make once).

This self-actualization extends to what I’m good at as well. Having shortcomings gives you the ability to develop other skills that make you stand out.

Some people spend most of their lives figuring out what they’re not good at and vice versa. So in this aspect I think I have a leg up on things.

Growing up I used to wish that I was more like the other kids, at first. But once I thought about it the idea scared me. I’ve known no other life. The unknowns of what my life could be scare me more than the struggling I know I’ll endure. I wonder if I’d settle for less if things came easier, something tells me I would have.

The only regret I do have, if I have to name one is not realizing I had a learning disability until I was almost a college graduate. I wish I had known it sooner so I could’ve learned coping skills for it earlier on. I can’t really attribute it to having Cerebral Palsy; although it is true that learning disabilities are more common in people with CP it’s not a hard and fast rule.

I don’t hope for a cure because I don’t need to be cured. I am who I am and that’s who I’m meant to be. It makes no sense to hope for something you don’t want. I have other dreams to hope for so I’ll stick to those.

*A similar version of this post first appeared on an old blog on March 27, 2013

Why You Shouldn’t Pray For Me

I believe in prayer. However public prayer tends to make me anxious, yes even during mass. Yes, me a budding Catholic theologian has issues with prayer (there’s a reason why I’m a “practicing” Catholic).

I’m pretty sure anyone with a disability, particularly a visible one, has had at least one uncomfortable public prayer experience that they’ll never forget, although they’d really really really like to.

Every time I hear or read about an awkward prayer encounter (much like the one below) I cringe, like Pavlov’s dog and that stupid bell.

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There are a few issues here. If someone says they don’t need help, they don’t need help so BACK OFF. It does not matter how well-meaning you are.

Now, to the actual issue I’d like to address here: Praying for people you don’t know in public. The sentiment is nice, and appreciated, but no (at least as a general rule).

If you feel the need to pray for someone out loud and in a public area, which I have no idea why you would do so, but anyway, ask the person you want to pray for if they wouldn’t mind.

Do not ask anyone else, even if the person cannot speak they can communicate, and will make their wishes known. If they say “no” respect that.

Not everyone shares the same faith and may find it offensive if you just go up to them and start praying for them (I am one of those people, just for the record).

If they say “yes” ask them if there’s anything they’d like your prayers for. I can almost guarantee that you’ll get an answer you weren’t expecting. Most people feel the need to pray for the full healing of a person with a disability. However it isn’t what we always want, especially if that person was born with their disability (like myself).

We are not broken. If you believe in God then why is it so unbelievable that God would create people “fearfully and wonderfully made” just as He made you?

So if you really feel compelled to pray for someone try to find some common ground.

But as a general rule I’m still going to say that you should not approach someone in public and pray for them, and keep your hands to yourself. You never know what potential damage you could be doing to another person, either physically, mentally, or both.

Please don’t pray for me but if you really have to, do it in private. I do not need to know you’re praying for me or why. I’m just going about my day, just like you are.

You Need Legs To Run

For some reason I’ve found myself in the company of runners (at least in the last decade and a half). Occasionally someone would make a comment about my ability (or lack of) to run and I’d brush it off with an accompanying reason, like, “I’m not interested enough to invest that kind of money in a track chair, especially since they’re not covered by insurance.” It wasn’t a lie, but it wasn’t exactly the truth either.

All of the questions/comments were innocent but not all were eloquent, for example, “Blind people run marathons,”

Because blindness and Cerebral Palsy are right next to each other on the wide spectrum of disabilities…..

“You need legs to run. That’s basically my weakest body part,” was the only remotely sensible thing I could think to say (but “ARE YOU OUT OF YOUR EVER LOVING MIND” almost came out instead)

Now I know you don’t really need legs to complete a marathon. Tatyana McFadden has proven that again and again and probably will again. But running using my legs were the context of the conversation so I went with it.

It’s the less than eloquent comments that make me think, am I doing too good of a job assimilating into able-bodied society? (I’m sure there’s a more eloquent way to state that, but I’m just going with my 1st instinct here).

I’ve always thought I wanted people to see past my disability, but do I really? Does seeing past disability mean that it doesn’t exist? If it does I don’t want what I always thought I wanted.

I used to think it was a compliment when someone told me they didn’t see my disability. These days I have 2nd thoughts.

I want to be seen as me “warts” and all; although I don’t see my disability as a “wart” (for the record).

Trying to not see someone’s disability, when it’s clearly visible, seems like a noble goal but it’s far from realistic.

If I’m going to go out with a group of friends “seeing past” my physical limitations can prove disastrous, both with and without my wheelchair.

The goal, for lack of a better word, for anyone and everyone is to be seen as who they are; not ignore or give any more attention to any part of themselves over another.

So are those with disabilities doing a bad job representing themselves if people forget that they have a disability? Is the able-bodied community overcompensating by telling people with disabilities that they don’t see their disabilities?

You may not need legs to run but you need to be seen as your whole authentic self in order to be successful.

On The ADA Anniversary

This week (this upcoming Sunday) is the anniversary of the Americans with Disabilities Act (ADA)

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re throne for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014