Maybe I’m Not An Expert

With March coming to a close so goes my blogging blitz. It never ends up how I think it’s going to and this year was no exception.

I feel like this year was different than the others, for a few reasons, less facts, more stories, for one thing, or is that two?

There were topics I wanted to write about but never got around to or have already written about. When I came up short I dove into my archives, probably more than I wanted to, but it worked. I think?

I’ll get to more stories later on, possibly when the timing is better.

One thing that kept getting my attention this year was the focus on children and the desire to treat, if not cure Cerebral Palsy as soon as possible.

This isn’t new by any means, but it seems to be gaining more attention for whatever reason.

In a way my focus this past month has been more personal because it’s how I’ve grown into adulthood and the different phases of life that people, CP or no CP, find themselves in.

Not every aspect of life comes with statistics, and even those that do come with outliers.

So, for now, and probably in the future, I leave you with more stories than statistics because you can find statistics somewhere else.

Life as an adult with CP is an oddity, a misconception which I brush up against every day, so although Cerebral Palsy Awareness month is over that doesn’t mean my efforts are over, at least not completely.

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All Cerebral Palsy related posts

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Disability & Athleticism

At the beginning of December I was sitting on the edge of the warmup pool debating my cooldown, it’s something I don’t enjoy, if we’re being honest. The warmup/cooldown area at meets is worse than a highway during rush hour which makes my dislike even stronger. The internet memes don’t lie. I literally have to talk myself into the water and keep telling myself to stay in for the good of my body, especially after 1 relay, 4 individual events, and a long ride home.

Before I dropped into the water, my preferred method of entry, I struck up a conversation with another swimmer. I didn’t know her at all (and I still don’t) but our conversation will probably stick with me for a long time (and will make me think again about using the warm down area).

She congratulated the meet organizers on including swimmers like myself in the event, even after I pointed out that it was in the rules that “swimmers like myself” be included in such events, because one must be willing to be an educational moment at a moment’s notice. She then went on to compliment me on how brave I was for being willing to overcome my obstacles and compete regardless.

At that point I just smiled, smirked really, and dropped into the water. There was nothing more I could’ve said at that time to change her prospective (and I don’t think I wanted to put forth the effort at that point either).

Last month I watched a video of various Paralympians discussing various misconceptions about para-athletes and it reminded me of that day in the warm up area.

 

Having a disability, especially Cerebral Palsy in my case, does not mean someone cannot be an athlete.

I work just as hard as my teammates, sometimes harder (according to them anyway), to achieve my goals.

I may be a person with a disability, but I am also an athlete with a disability. Someday I’d like people, who I don’t know, to think of me as an athlete before thinking about my disability first.

 

Sports As Therapy

When I tell people that I’m a swimmer it’s not uncommon for them to think I swim as a form of physical therapy, even when I say that I’m part of a swim team.

While aquatic therapy can be beneficial, and I have taken part in the past that isn’t why I swim.

I swim as an athlete would swim. I show up to practice and swim, basically, the same workout as my able-bodied teammates. While I have gotten stronger, the goal is to make me a better athlete, unlike physical therapy which seeks to treat weaknesses.

I wasn’t involved in sports as a kid, for a few reasons, I wasn’t good in gym class, inclusion in sports wasn’t as popular or accepted as it is not, and I had physical therapy after school.

I don’t blame my parents for not putting me in sports, I wasn’t interested in what was available to me, so I wouldn’t have lasted long anyway. I also wasn’t a kid who could do something every day after school and not loose my mind. I tried it, it didn’t work. Plus, I wasn’t a good student, so I would’ve been kicked off any team based on that, even if I was allowed to be on one.

But times have changed, kids are allowed to at least try being on a team (if they meet the standards) regardless of their abilities/disabilities.

It’s a step, but I see a big drawback.

Parents are using sports as a substitute for physical therapy.

It’s not the case for everyone but that doesn’t mean it probably happens more than it should.

Physical Therapy offers something organized sports doesn’t and vice versa.

One is focused on the individual, increasing function, minimizing deficits, and reaching goals to please bureaucracy.

The other has some similar objectives but it’s more team based while the goals are determined by the individual to measure success.

Both require work, but one is more like a job and the other is more like a social activity (in my opinion).

They are not interchangeable, so they should not be treated as such.

If you treat sports as therapy rather than a fun activity then there’s a chance that a child will see any physical activity as therapy, an unwelcome activity that sets them apart from their peers, they should not be robbed of the opportunity to interact with their peers in a way that only athletics can provide.

Sports should not be seen as another form of therapy, rather they should be seen as what they are activities in which people can find their passions.  

When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

“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

Life Goals Of A 10 Year Old

What’s one thing that my 10-year old self thought I would do?

I thought I’d be an Olympian. Seriously.

At 10 I thought I had a legitimate chance of making the Olympic Swim team, even though I had never been on a swim team (and haven’t been able to join one, ever). Not too long after that I thought I’d have a better shot at the Equestrian team so that became my goal for a while. Either way Olympian was still on the radar, and in the back of my mind it still is.

Can I still do it?

Olympian. No. That was probably a “no go” from the get go, but I didn’t know the Paralympics was a thing back then. Paralympian? Maybe there’s still a slim possibility, although doubtful. I’d probably have to find a sport with a wide age range since I’m not old, but I’m not exactly young either.

How would I approach it to make it happen?

Believe it or not I’ve actually looked into it. But it looks like I’d have to make some major life changes, like moving and such, and that isn’t really feasible right now (although if someone(s) would be willing to help me out I wouldn’t turn down the assistance at all).

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

Resolute

Resolute: having or showing a lot of determination

I hate getting up early.

I love to swim.

I’ve learned quickly that I have to do what I hate to get to do what I love (no, this wasn’t the 1st time I’ve ever learned this, for the record).

On days off from work (& days I usually have schoolwork due) I get up early and hit the pool. It’s not my idea of a prefect pool day but if I stay under water long enough its close enough. It gets even better if I decide on a longer swim and everyone gets out of the water leaving me all my by lonesome (& it’ll be even better when everyone gives up on their new year’s resolutions).

One of the best sounds in the world is a completely empty pool and all you can hear is the sound of your breathing and your limbs going through the water.

When I decided to take up swimming again I adopted a motto similar to the US Postal Service.

“Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds”

I wasn’t going to let the early hour or the cold be the only reasons keeping me from the water; which is easier said than done when temperatures are below zero and the parking lot isn’t plowed well.

This motto (if you want to call it that) has worked out well, so far. There are days when I don’t want to get out of bed but I change my mind as soon as I hit the water.

I tell myself I’ll “go easy” if it takes me a while to get into the grove so early in the morning but that changes pretty quickly. Sounds great, right?

It is, unless you have lifelong habits that are pretty bad and pretty unbreakable without supervision.

I was that kid in PT who would lie about how many sets of an exercise they’d done or whether they’d done the home program (honestly I was the same way as an adult until very recently). However in non PT situations (like swimming lessons & such) I tried to get away with “going the extra mile” and denied any possible fatigue (sometimes it worked, sometimes it didn’t).

The 1st time I swam 1,500 meters after getting back into the pool I felt great, then I got home and could barely get out of the car never mind walk into the house.

See what I mean about benefiting for supervision?

I’m not going to nonchalantly say that it’s OK that this kind of thing happens, because it’s not, but I do have CP so fatigue happens, and to varying degrees. But I wasn’t going to let one incident hold me back because I’m scared of it happening again (it’s going to on occasion no matter what I do or don’t do).

However a good workout does sometimes create a few post workout problems. Like not being able to get up the stairs to hang my suit to dry so I’ve had to improvise.

Suit On Chair

Turns out the back bar of a wheelchair frame is multi-purpose 🙂

I may not progress enough to swim in Rio or Tokyo but I’m making myself happier through hard work.

Although seriously if someone wants to help me (or knows someone who could help me) swim in Rio or Tokyo I wouldn’t turn down the opportunity.