Free The Feet

One of the interesting things about rebranding a blog is that you have something of a stockpile of posts to pull from, whether it be for memories, new ideas, or even reposting. I wrote the following 7 years ago, almost to the day:

-I don’t like shoes.

-I don’t like feet more than I don’t like shoes.

-My dislike for feet has nothing to do with how unattractive my feet actually are.

-My college campus was the land of flip flops, even more than most schools.

-I have a friend who promises his children won’t wear shoes until they’re at least 5, and even then not in the home.

-More than one of my friends gave up wearing shoes for Lent, and no one was fazed by it.

-I use to know someone who never wore shoes, even in the dead of winter.

-I can only wear sneakers.

-Only on rare occasions can I wear shoes that are not sneakers.

-I use to require getting a new pair of sneakers each month.

-My current shoes have lasted over 6 months surprising my exercise physiologist and new physiatrist, but for different reasons.

-My friends use to declare “free the feet” days during college.

During my last post-op visit I had several things on my mind. I’ll spare you the nitty gritty but having met with my physiatrist the day before & having opinions from the exercise physiologist weighed heavily on my mind. One of the biggest reasons I moved my Orthopedic care to Boston was that things are more comprehensive and having to coordinate my own care for the last few years had become exhausting and seemingly unnecessary. But I still have trouble letting go and not hand delivering mounds of paperwork to each doctor and/or specialist during each visit (I have printable files I regularly update as well as the “official” stuff) or putting my two cents in here and there in the form of, “Well ___________ said that_________________________ and it makes sense to me so……….”

I’m a rare crossbreed of nosy, self-controlling, snitch-of-a-sponge. But 9 times out of 10 I will deny this fact.

At my first post-op appointment, I was given a prescription for a new AFO, a “downgrade” for the one I had been wearing for the last few years. I wasn’t happy about it because (1) I actually liked the AFO I had and felt it only needed an adjustment or two (because I’m a professional after all) to be able to carry on, (2) I REALLY didn’t want a new AFO after all the work I had done. But I relented with the understanding that within a year I’d hopefully be able to rid myself of AFO(s) altogether.

“Can I stop wearing the AFO at least sometimes because….(I’ll spare you the pleading)”

“Well let’s see.” (I hop off the table take barely 2 steps) “Yeah, you’re fine. But after the Botox you’ll want to put it back on…… (tra la la)”

So I went out and bought new shoes, because an AFO can stretch out a shoe like nobody’s business. They aren’t my favorite looking but the fact that I’m wearing them AFO-less puts them at the top of the list by default.

Not really remembering that I’ve worn an AFO for years meant I was grossly under prepared in the sock department. I think I have 3 pairs that don’t come up to my knees. No matter how many I actually have it’s not nearly enough. Lucky for me my mother has an abundance of socks. Well not really, but she has a good number she doesn’t wear so I’ve become the proud owner of them, again by default.

I’ve adjusted to life without an AFO pretty easily & rather well I might add, but that all ends on Monday when I get injected with Botox.
I’m hoping going back to the AFO is only a short term deal, or else these last few weeks have been a major tease.

At least I’m not going back to lock-up. That was an experiment that I will never repeat for as long as I live, and neither will my orthotists.
For now I’ll be eagerly anticipating my next “Free The Feet” day.

*A similar version of this post was written on July 16, 2010

I Pulled My Armpit?

I’ve been having issues with my right arm for months. I figured it was just lingering from my unfortunate encounter with a chair a few months ago. It would get better for a while and then not, and then get better and then not, and you get the idea.

I’m sure it’s not that big of a deal for most people but when your legs aren’t normal on a good day and your arm is sub-par you’re basically down to one fully functional limb on any given day.

I’m normally sore for a while after a trip too.

So, I just waited it out.

Until I thought maybe I should stop waiting.

I mentioned it to my trainer and he found a fairly large trigger point in the region of my scapula.

I texted a friend with a rehab background after my session to find out what she knew about it.

“Um, serratus anterior?……Basically the muscle on your side below your armpit.”

Awesome.

Wanting to know more about what I’ve gotten myself into I came home and looked it up for myself.

serratus-anterior

How someone can find an injury within this mess without the aid of additional studies is beyond me but I’m glad it’s possible, especially so early in the “Medical New Year” when I avoid any doctor related anything like the plague.

Being a swimmer with CP I’m realizing I have to be a different kind of careful when it comes to my upper body.  

Being A Human Pincushion (part II)

 Once upon a time I said I probably wouldn’t mind being a human pincushion for a day, for a second time, if all the right ducks were in the right row. That almost happened this year, almost, when my PM&R’s office called needing to reschedule my appointment.

But with the sports medicine specialist away for most of the month (it’s conference season after all) it just wasn’t going to happen.

Instead I ended up going to Boston twice in a small window of time, without much time to spare, naturally.

On the plus side both appointments were resident free so that was pretty great, considering.

Although the appointments were over a week apart I still felt like a human pincushion, and not in a practical way that benefits me in the best way possible.

But it’s done, I’m hoping to get at least 6 months out of this round, although a year would be more ideal.

Never again would be magical. However, I know not to do that to myself.

So, I’ve set my sights on the 6-month mark.

The bruising and soreness has disappeared and I’ve returned to my regular activities, and then some.

I’ve made the appointments, just in case, but hope to be able to reschedule them for a later date.

Being a human pincushion isn’t an ideal situation but I think I’m beginning to come to terms with it and all that it entails, like scheduling appointments in a timely manner, rather than waiting until I’m “past due” and begging to be put on the schedule.

Although I’ve been a “professional patient” for decades I’m still learning the tricks of the trade.

“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

Speechless For Now, Or For Good

I recently wrapped my 1st stint as a podcaster. It was an interesting experience to say the least. It wasn’t something I ever envisioned doing but I didn’t want to turn down the opportunity.  It was a new challenge. And in all honesty, it was one I wasn’t always up for.

Now that the season is over I’m taking time to evaluate whether I want to do another season. If you listen to the season finale episode you’ll hear me joke about whether you’ll hear me on Special Chronicles in the future.

Honestly, I haven’t made any decision either way at this point.

There’s a lot to consider, now that I know what podcasting really involves.

-I have other projects I’d like to work on.
-Do I have the time for everything?
-Do I have the energy for everything?
-Can I produce enough quality content?
-Do I want to produce more content than I’m already producing?
-Do I have anything left to say that someone hasn’t said or can’t say?
-I went into this venture thinking it would be a temporary gig, although it lasted longer than I thought, that doesn’t mean it wasn’t still meant to be temporary.

And that’s just the short list of thoughts.

speechless-abc-tv-series-key-art-logo-740x416

When does one truly know when to step back, move on, or carry on?

I guess we’ll all find out the answer in the fall, at least in this case.

Cerebral Palsy: The Review

Another Cerebral Palsy Awareness month has come to a close. In year’s past I’ve come up with some kind of “wrap up,” this year I have nothing. The tank is empty.

Note to self: do a better job organizing posts to avoid blogging in circles.

Another note to self: Make plans.

Additional note to self: keep a file of topics and questions.

Here’s A Complete Listing Of This Year’s Posts:
End The Word
What Is Cerebral Palsy
The Matter Of Privacy
Athleticism + CP = ?
Things That Make You Say Ow
BYOC
Life Without An Off Switch
Hide & Seek
CP is a Finger Print
Is This Thing On?
Of Ice & Pies
Gifts Of CP
It’s Not Easy Being Green
CP See, CP Do
Brain Matter(s)
Confessions From A CP Adult
An Ode To Sweet Caroline
Cerebral Palsy Awareness Day
Is Disability A Choice Or A Destiny?
Acknowledging Your Personal Puzzle
A Deck Of Cards
PwDs Are People Too

Lists of posts from years past:
What Is Cerebral Palsy Anyway: Review
March = Cerebral Palsy Awareness Month + Review
HAWMC Recap

PwDs Are People Too

For some reason people with disabilities (PwDs) are often seen as less than human or in some way super human, and this is just one of the many binaries we get put into. It’s frustrating, but at the same time a fact of life that we have to deal with, no matter the disability.

Just because I have CP doesn’t mean I don’t deal with the same things “normal” people do.

I get up and I go to work every day, just like everyone else.

I go to work and I make a life for myself, just like everyone else.

I’m making a life for myself, it may not look like I thought it would but I make it work, just like everyone else.

I’m making it work, sometimes because I don’t have any other choice, just like everyone else.

I make choices every day to get one step closer to my dreams and goals, just like everyone else.

I redirect my focus when my choices don’t get me one step closer to my dreams and goals, just like everyone else.

I make plans for what I think my life will look like in 5, or 10, or 15, years, just like everyone else.

I get mad when things don’t go according to the plan I had in my head, just like everyone else.

I lay in bed almost every night and think through my day, just like everyone else.

As I think though my day I think about tomorrow, and the tomorrow after that, just like everyone else.

As I think about my tomorrows I fill them with my dreams and hope that one day they will become reality, just like everyone else.

Next time you think a person with a disability is just so much different than you are think about what you think about every day. There’s a good chance that person with a disability is having at least half of the same thoughts you are that very same day.

 

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

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.