“She’s A Really Good Swimmer” Redemption

When I first told you about my time on the swim team, or rather clear lack thereof, I felt like something was missing. Although I made my point, or at least I believe I did, I was left with negative feelings.

I need to make something clear to you.

I know I’m a good swimmer. I haven’t hit the pool in some time & I probably won’t ever be able to call myself an Olympian (or Paralympian). Regardless, I’m a swimmer.

My father is an Eagle Scout & being his only child scouting was a nonnegotiable. A good portion of your camp day involves water safety also known as swim lessons (grouped with the help of the Red Cr0ss). My 2nd year of camp I was in the “swimmers” unit. The unit that got more pool time in order to put on a water show at the end of the session. It was pretty awesome being able to have such likeminded friends. Plus I really progressed as a swimmer

My next year at camp I chose a different unit & was actually pretty excited about it, until the first day of camp came around & all of my friends from my old unit were in another unit, together. I figured I’d get use to it & see them quite frequently, until I found out where our units were located.

The next day I asked to switch units. It was pretty obvious that I wanted to be with my friends. Everyone in the office knew it, including the camp nurse (a friend’s mom) who probably told everyone before I arrived with my request. However, “I want to be with ALL of my friends” does not count as a legitimate reason. So, I came up with another reason.

“The unit I’m in is so far from the flagpole”
(Which is considered the center of camp)

It wasn’t the most far-fetched reason. My unit was in the furthest possible location, from everything. A portion of camp is located on a mountain, which is where my unit was. It wasn’t that bad really. I had been to that unit location before, years before when I was younger than & not as able as I was making my case. But no one who could O.K. my unit switch knew that.

I used my disability to my advantage. I admit it. But it was one of those times when a girl just needs to pull out the heavy artillery.

I moved to my “new” unit the next day.

We weren’t “the swimmers” unit our second year together but we were very much the same unit, except that our assistant leader was now our leader, and we now had an overlook to our old unit location, and there were maybe 3 new girls.

Typically, each year someone attends camp they have the opportunity to take the swim test to move up to the next level. I was “still” at level 3 at the beginning of my third year (I had started at 2, like most). No one had approached me to test at the end of the previous year so I took matters into my own hands & asked to take the level 4 test.

I had even asked my friend, whose mom was the nurse, if she thought I could pass the test, since she was the best swimmer in camp (councilors, lifeguards & her own mother included). I knew I could pass the test, but assurance is always nice. I was so sure I would pass I threw my swim cap into the trash. I was getting that yellow cap.

The next day I jumped in the pool with the level 4 group. Something just didn’t feel right to me, but I gave it my all hoping what I was feeling didn’t show.

It turned out the night before they changed the chemicals they used to treat the pool and I had a small leak in my goggles, which didn’t help matters.

I was handed a new white cap and told to go back to the level 3 group the next day; on top of an eye infection that developed the next day from the change in chlorine.

It felt like the first day of camp all over again, the day everyone gets checked for lice.

I didn’t understand it. I was ready. I was willing to work hard. Most importantly, I was able.

The only comfort I had in this situation, if you can call it that, was that my friends felt the same way. They knew I didn’t belong where I was. In fact they encouraged me to ask to take the test again at the end of camp, if I wasn’t offered the opportunity.

During the last days of camp, it was announced that there would be camp Olympics (since it was an Olympic year) and many events were to take place at the pool. The former “swimmers” unit was ready for it all.

Someone suggested I be on the relay team.

Me? The girl who less than 2 weeks before failed her swim test. Swim the relay?

I (unknowingly) achieved the dream for every special needs/disability parent out there.

”Her first year of swim team, I think she was an inspiration to her teammates. The past two years, though – and especially this year – I think she’s just another kid to most of them”

I agreed, and swam the first leg. I didn’t want to be the reason for our unit to lose. I’m also no idiot. Everyone knows swimming the anchor leg is an honor, one reserved for your best swimmer.

We weren’t the runaway winners at the “swimlympics” that year, but we put on a good fight when we needed to. I don’t even remember how we placed. What I do remember was that we had the best show of unit pride and teamwork at the pool.

I never officially “made” the swim team (or officially got that yellow cap) but the Pips girls were my team when I needed one.

(I still wish I could make that coach eat his words though)

*A similar version of this post was written on August 28, 2012

“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

Why I: Survived Bullies

I’ve been called an old soul a few times, as most recently as a few weeks ago. This makes me laugh because I am nothing of the sort, at least I don’t feel like it.

It’s true I use to play At@ri, jumped on the St@wberry Shortcake/C@re Bear bandwagon before my peers, and I counted down until the premiere of the new D@llas series because I’ve watched nearly all the episodes of the 80s series; but I think that hardly qualifies me as an “old soul.”

I’m my parents’ only child; however they come from big families themselves so my extended family is vast, yet fairly close.

My aunt grew up taking care of my dad, because that’s what kids in big families do. Their birthdays are a day apart (and a few years), which just adds to their closeness.

My childhood was filled with family events and play dates of every type, shape, and size available.

For the most part I was around boys my own age or people who were older (& I won’t be saying how much in case some of those people ever find this blog). Plus only children are pretty much “grown up” by 7 since they spend so much time around adults, or so I’ve heard.

It’s all ingredients for an interesting childhood. As Opr@h says, “It’s what I know for sure.”

(This also explains why the first time I lived with girls I was almost 20, and had a really hard time with it all. And the first time I moved into a house with people I barely knew I was not-that-secretly happy that one was a dude. It’s an absolute myth that girls are cleaner, at least when it comes to bathrooms…..especially when it comes to bathrooms)

I’ve been more or less “at the end of the line” when it comes to development (CP aside). When everyone’s babies became kids, I was the baby. When the kids became teenagers, I was the kid. When everyone had school years in the rearview mirror I was looking at colleges.

Let’s not forget I was the little kid for all the big kids to practice parent, and just flat out have fun with. Although there was one time during the flood of “how are things going at school” emails and calls when an older cousin was having something of a midlife crisis and decided to share it with me, when I was 18 and trying to not flunk out of school.

The funny thing is, if you want to call it that, was that I don’t ever remember telling anyone I was bullied (except for begging my parents to let me transfer schools). My all knowing babysitter knew, but her younger sisters went to the same school and had classrooms on the same floor, so she had an exclusive to my preteen/teen torture.

If I ever said anything no one ever made a big deal out of it. It would’ve made matters worse anyway. Instead I was almost always given advice that didn’t pertain to the moment, it was lifelong advice. It would’ve been nice to have someone go in an “have a talk” with one of the bullies but what I got instead ended up being exactly what I needed.

Proof that there’s a light at the end of the tunnel.

And some pretty great people I get to call my family.

I survived being bullied because I knew the “b!tchy girl phase” doesn’t live in everyone forever. I saw enough of it in my home life to look past it in my school life, and when I couldn’t someone managed to get some sense into me one way or another.

*A similar version of this post was written on September 26, 2012

Why I: Am Not Meant To Be A Catholic Blogger

I’ve had this post in mind since Benedict’s resignation. I don’t think I’m able to write it better now than a few months ago, but if I wait any longer I’m going to forget it altogether.

I found my first Catholic blog by accident. It wasn’t long before I thought I would be a good Catholic blogger too. At the time there weren’t many known Catholic bloggers, in fact many young adult Catholics were being told to stay away from internet Catholicism.

I thought I could be a voice for young adult Catholics like myself. It made perfect sense. The internet didn’t scare me & I had plenty of resources at my disposal (at least then).

However it didn’t take me very long to figure out that I wouldn’t be good at it. I did compare myself to other Catholic bloggers, but that was only part of it. I just wouldn’t be good at it. I’m not meant to be a Jennifer, Arleen, or Chelsea.

I don’t find God in church.

There was a time when I never went to mass at all. It wasn’t doing anything for me, except for filling me with rage & anger. Then there was a time when I went to mass daily. I have to do what works for me when it works for me. I can’t go to mass if I’m not feeling inspired to do so. Mass is a piece of the puzzle that makes up my faith life; it’s not the be all end all.

I struggle with modesty.

 It was a long standing debate between friends and me whether I was dressing modestly. In the end we decided that it was best to agree to disagree. I find wearing a dress to be incredibly uncomfortable, in fact I didn’t own anything that wasn’t pants for a long time. I don’t understand the obsession that modesty automatically means dress & immodest equals wearing a tank top. In wind a dress can blow & expose everything, pants don’t move. Tank tops are more complicated so let’s just leave it at I like to have all my bits and pieces covered.

The Church (or rather churches) isn’t accessible.

It’s true that it’s not accessible for people intellectually but that’s not the type of access I’m talking about here, although all types of access shouldn’t be ignored. Many people with disabilities can’t even get into a church to celebrate mass. It’s true that many churches have a handicapped row at the front of the church and it does provide a great deal of access for those who choose to use it. I however find a downside to it. I jokingly call it the “crippled and lame” section. Everyone wants to feel a part of the community. Putting people upfront, because it’s the only place there’s space, can make them feel like objects on display instead of being part of something. There’s also the issue of ramps & elevators…..

The pro-life movement.

I consider myself to be pro-life personally but on a global stage pro-choice. I think the pro-life movement overshadows many of the other issues the Church should also be taking a stand on. I also feel like there’s a piece of the pro-life puzzle that’s missing. We shouldn’t be ignoring other issues for the sake of one.

A feeling of lack of understanding.

I’m guilty of this as well, so I’m going to attempt to treat lightly. One of the biggest reasons I turned my back on the Church was the lack of understanding (and even the desire to try to understand). People were too focused on trying to heal me and tell me I needed to be a better person. People are different and share and express their faith in different forms, even among Catholics

I don’t know the Rosary.

At one point I’m sure I knew it, but not anymore. Even more shameful, at least to some of you, every time I try to learn I miscount my Hail Marys and/or fall asleep in the process.

I can’t be a good leader if I’m not a good follower.

I can’t tell people how to be a Catholic if I’m figuring it out for myself.

*A similar version of this post was written on May 10, 2013

Why I: Joined A Discernment Group

Ten years ago I was looking to make a fresh start after a near crash and burn of my academic career & a list of personal issues. (Side note: The fact that I started college more than a decade ago makes me feel kind of old.)

Here’s what’s awesome about going to a university with an active campus ministry:

There’s always something going on.

It’s almost kind of ridiculous how much stuff you can be involved in (or not).

At the time I wasn’t a practicing Catholic, in fact I was still in the recovery from Atheism phase of things, because that kind of journey practically requires a recovery period. I called myself a Christian but I wasn’t ready to “drink the Catholic k00l aid” just yet.

I steered clear of any organized group outside of the theatre department my freshman year and I was reconsidering that plan for sophomore year. The definition of insanity is doing the same thing and expecting different results, so I didn’t want to do the same thing.

There are always plenty of things to do in a theatre/drama department as well. There are always “other duties as assigned” (to put it one way) or a friend is working on some sort of project at all hours so if you want to see them it’s best to go to them (and then you end up helping on the same project, somehow). But I didn’t want to be a “drama kid,” at least not exclusively.

At some point during orientation, sometime after neighborhood orientation, I huddled into the campus ministry office with other new students to hear their “sales pitch”. This was some place I wanted to be involved. I knew that from visiting a friend earlier in the year. The how was the part that needed to be determined.

I’m not a try everything once type of girl but that’s pretty much what ended up happening. The first few weeks the only thing I had second thoughts on was solemn adoration; anything labeled solemn or somber means I’ll laugh uncontrollably. I needed to be better versed at adoration before the sound was turned off.

The first group I showed up for (I think) was women’s group. I loved that group. In fact many of the ladies I met thanks to that group I’m still friends with today (maybe I’ll tell you about that someday).

The next night discernment group would be meeting. I had no idea what “discernment” was but I figured it would be similar to women’s group so I showed up.

I probably should’ve looked up what discernment was before I decided to go to the group. But if I did I probably wouldn’t have gone.

Instead of sitting in the lounge area we met in the prayer room. And instead of one of the campus ministers facilitating there were two nuns, from The Little Sisters of the Poor (an order I knew nothing about, but have come to love dearly).

At some point during the hour I realized I was in a room full of ladies who were considering becoming nuns. I was in the wrong place, but I didn’t want to get up and leave (for fear of embarrassment only).

I may have countless sisters these days, but back then I had only known two, and the impression they left wasn’t one of full warm & fuzzy memories.

I left that night thinking I probably wouldn’t go back (because I wasn’t even in the same hemisphere of that life path) but when Thursday rolled around again I did. I’m still not sure why. The funny thing is I kept going. I think I only missed a few meetings during the year, when being a drama kid had to take a front seat.

I even went the night when we’d be saying the Rosary most of the time. When I grasped even less of it than I do now & I had to borrow a Rosary from the spares that someone always seemed to have on hand.

For me it wasn’t about discernment, at least not at first, it was about meeting people who just might be like minded. When that didn’t work out so well it was about having concrete examples of what I might aspire to. Not to mention meeting some religious sisters who were not only nice, but they went out of their way to invest in others.

I will never ever forget that Sister Mary David told me it was perfectly fine to fall asleep during adoration “because the Lord knows you need your rest.”

Never mind that I had agreed to sit up with the blessed sacrament only to fall asleep face down on a futon that was in our makeshift retreat chapel.

My original intent couldn’t have been any more off. However I think I got a lot more out of it than I realize (yes, even now). I made a mistake in judgment but it was one of the best mistakes I could’ve ever made (especially given my history with mistakes).

Even if I have come to have a love/hate relationship with the discernment process.

*A similar version of this post was written on September 4, 2013

Kilimanjaro

I love mountains.

I love looking at them. I love wondering how many people are climbing them at that very moment. I love thinking about how many people have climbed them. I love thinking about how many people will be repeat climbers (or hikers).

Even so I have healthy limits.

I know portions of Rainier are attainable as are Olympus.

Kilimanjaro is off limits.

Really cool, but off limits.

I hate treadmills.

From the first time I was ever put on a treadmill I’ve hated them. For some reason it became the first step to attempting to transition a patient from PT to a self driven exercise program, kind of hard when no one could come up with anything other than a walk on a treadmill.

When the treadmill first came up while at the gym, because we usually discuss to some extent before do, I divulged my hatred for the machine, it bores me to death. I need to be entertained to some extent while on a treadmill.

If I could pull an Oprah and play scrabble on my iPad while walking that could work.

But that would require an iPad.

And the ability to spell.

Maybe that wouldn’t work so well.

So the treadmill is used sparingly, because the word, “bored” is right up there with “can’t” or “no.”

Even so every few weeks or so I get on the treadmill (with the trainer or exercise physiologist standing by because I will get off) because it’s one of the few ways my glute muscles will actually get going (or “fire.” “Firing” muscles are always a good thing, so I’m told)

What is done on the treadmill is usually left for when I’m actually on the treadmill, and most of the time it’s for very good reason:

“I call this Kilimanjaro.”

(I clutched the treadmill to override the urge to jump off of it)

Apparently “Kilimanjaro” means for every minute on the treadmill you increase the incline by one. Then you do it again.

(I think, I deliberately wasn’t watching the settings change. I just walked.)

It takes about 20 minutes.

(The longest I’ve EVER been on a treadmill. EVER)

Do you want to know the most shocking part?

I didn’t die. I didn’t even want to die by the end of it.

I just wanted to be done for the day.

(Which didn’t happen)

I’ve done my Kilimanjaro. What’s yours? Have you done it yet?

*A similar version of this post was written on January 28, 2011

A “Fit” ting Realization

I’ve made a few changes in my fitness routine. I won’t go into the details because I don’t know how much of the new will “stick” and how much of the “old” return, or if at all. It’s also more complicated than just feeling the need to change things up; although that was part of it.

In the midst of all of the change and transition I’ve realized something about myself.

I would make the worst workout partner on earth, possibly the universe.

Exhibit A: I’m on an elliptical next to someone else on an elliptical. I’m barely able to keep the machine going under my own power. That someone else inches from me is going close to 100 rpms (or whatever) while texting full conversations and listening to an iPod, like it’s no big deal.

I realize we look like an exercise infomercial, and he has no clue what he’s doing (and how his actions may be effecting the self-image of others.

I resist the urge to push him off the elliptical, mostly due to my personal safety (balance) than any other repercussions.

Exhibit B: I’ve just finished up a few minutes on the recumbent bike. A feat that would have been laughable not that long ago but now I can keep a steady (albeit painfully slow). The seat also has to be “just right,” pretty much the ultimate short people setting but not quite. I hear a lady behind me say she hates the bike (can’t say I blame her) because she’s too short (she’s actually a little taller than me). I think, she’s going to be pretty surprised when she realizes she’s going to have better luck today.

I watch her out of the corner of my eye and she peddles twice (or maybe it was four times) and quits.

I resist the urge to give her a five minute lecture on how it took me years to do what she just did and she gives in, because she probably surrounds herself with people who allow her to throw in the towel far too soon.

Exhibit C: I get to the pool 5 minutes “late” (5 minutes after opening) so all the official lap lanes are taken. I “trudge” down the pool ramp wishing it was deep enough that I could roll my wheelchair to the edge of the pool and “jump” in.

The lady in the lane next to me is doing “the old lady dog paddle.” She shouts to my mother (who has to bring me to the pool because of a lack of automatic door openers) that she forgot to close the door (the door closed by the time she got back to it). She does 2 more laps before getting out of the pool. She uses the ladder (which happens to be in my lane), she almost kicks me in the head in the process.

I stop myself from wanting to shout at her about noticing an opening a barely open door yards away but she can’t manage to keep her heals within striking distance of my eye.

Exhibit D: I’m using the upper-arm bike trying to keep a pace in the 50s rpm range. I realize I’m actually keeping steady in the mid-60s without much difficulty. Someone is using the upper-arm bike next to me.

It doesn’t take me long to realize I’m trying to out due them, without knowing how far they’re going or who they are. But I did get to 70 rpms.

Exhibit E: Lest we forget why I spend the extra money (which I don’t really have), because I’m not the best person to be left to their own devices. For all intents and purposes I need a “babysitter,” because if you tell me to do 3 sets of 10 of anything and walk away I’ll just make it look like I’ve done 3 sets of 10 & then lie to you about it.

But at least I’m honest about my dishonesty, within reason.

Exhibit F: Even when I win (a board game, cards, anything) I don’t consider it a real win unless it’s by a fairly large margin.

My name is Sarah, and I think I have a problem.

*A similar version of this post was written on October 15, 2014

 

A Deck Of Cards

I was sitting in a prospective student orientation hearing school statistics. In an effort to create a diverse school environment administrators had percentages they tried to maintain. It didn’t take me long to figure out my admission would be a slam dunk.

And it was. I was admitted; attending was another story.

It’s my first memory of thinking that my “different-ness” could be an asset.

It took me a few years to realize that this was indeed a disturbing thought for a 4th grader to have. That doesn’t mean that there were/are situations where this fact holds true.

There are times when I’ve tried to use having a disability to my advantage. Once you let the genie out of the bottle there’s no getting it back in, so you have to be careful..

 Life consists not in holding good cards but in playing those you hold well.”–Josh Billings

 Some time during high school I realized that my life was like a deck of cards. Sometimes my disability can be my ace in the hole. Sometimes it’s a joke(r). Other times it’s just another card in the deck.

I’d like to say that most often it’s just another card in the deck. Honestly that’s what I’d prefer. However that’s not how the world works, at least not now, but maybe someday.

I don’t walk around highlighting the fact that I have Cerebral Palsy. Just uttering the words “Cerebral Palsy” leaves people dazed and confused. It does open the door for educational moments but most of the time I don’t have the time, or the energy.

When it comes to day to day living I keep things as general as possible, but it’s pretty obvious I’m in the “otherwise abled” category. I prefer to see myself as just another one of “the guys” for a lot of reasons; a big one being I don’t want to hold my disability over people’s heads.

Think of “The Boy Who Cried Wolf” story we’ve all heard. If I brought up having Cerebral Palsy all the time what would that do? It would raise awareness, but would that be for a greater good? I doubt it.

There have been times when I’ve been looking for employment when I wondered if full disclosure would actually work in my favor. I mean companies put disclosures at the end of applications for a reason (& I’m sure they have quotas to fill, just like that school).

There have been times when I really wanted “that” job so the thought of using my different-ness as an asset crossed my mind. But how does someone do that without the potential for backfire?

I’d rather be the best one for the job when compared to other candidates. Not the candidate that filled a quota. I really don’t want to be the person who can’t do a job that everyone knows was a pity hire. (I’d rather not have a job if that’s how I get them)

Having a disability does leave room for other abilities to develop. It’s one of the best reasons to have a disability, in my opinion. As tempting as it is to broadcast my disabilities/abilities for my own advantage, it’s more important to show what I can do and let the work speak for itself.

Life is a deck of cards. Play them well.

*A similar version of this post was written on March 6, 2013

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?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

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

Confessions From A CP Adult

I’ve started this post about half a dozen times. It doesn’t happen to me a lot, at best I reorganize but this is one of the few blank slates. Most of my CP related posts I don’t come up with on my own. They usually start with a tweet, a post, an email by someone else, or a conversation with someone.

Rather than do a full on post explaining every detail I can think of about one CP related topic I wanted to get real, as in the real me living with CP. This may hurt a little, just so you know.

* I use my wheelchair more often than I probably should. Sometimes I just find it to be more socially acceptable. I also like being able to board planes first & having active duty service members follow me, especially Marines (although I dislike when they call me ma’am).

* It’s easier to explain why you use a wheelchair than explain why you walk funny.

* I have CP. I don’t suffer from it. The only thing I suffer from is misunderstanding, misjudgment, and plain old idiocy……..of other people.

* Not everything a person with CP does should be labeled inspirational. “Milestones” like getting your license or graduating from high school (and at this point even college), getting a job should be considered expectations.

* We are no one’s hero just for being average. Average is the goal. Leave it at that.

* “The R word” doesn’t bother everyone (like myself). However it does bother a whole lot of other people so just take it off the table, along with every other word that makes people with disabilities look bad.

* Just because someone has a disability doesn’t mean they don’t have loads of abilities in which you lack. Think about that.

* It is in fact possible to take advantage of having a disability (see my first point). I don’t do it often. I feel its “bad for business,” so to speak, to do so, but that doesn’t stop me. Every membership must have some benefits after all.

* It’s typical to be asked questions (and/or stared at), even a few that are completely asinine, but it can get annoying. Most people don’t mind answering them, please be thoughtful, and don’t get mad if someone doesn’t want to answer your question(s). The internet is great for finding answers, if you haven’t heard about it.

* People with CP are individuals first, just like the “average” person. Therefore we do not all have the same job, living situation, or social circles. Suggesting a desk job for someone simply based on your perception of their limitations is like giving someone a life sentence for a lesser crime (bad analogy, I know, go with it).

* CP is one of the most common childhood disabilities; therefore it’s pretty common for adults too. A small group of people know this; it can feel like a smaller group of people actually care.

* It’s amazing how common CP is, yet how little people actually know about it.

* The last thing someone with CP wants to do when suffering with a non CP related health crisis is explain to everyone what CP is. Treat the crisis then have an educational moment.

* Sometimes I avoid situations because of the social pressure to be a role model when I just want to be myself.

* I’m a person first, please treat me like one.

* It’s possible to forget you have CP with nothing to compare it to you’re constantly living in a normal all your own. Sometimes it takes passing a mirror for my brain to actually get it so for low maintenance girls (like myself) I can go days without really seeing myself in a physical sense.

* Not everyone is into adaptive sports (or other activities). That’s O.K.

* Few people with CP have friends with CP. I have friends with other disabilities/medical conditions but they were not sought out. They came into my life. Some became fantastic friends, others I’ve wished well and gone on my way.

*A similar version of this post was written on October 2, 2012