Life In Boxes

Life likes to put people in boxes, sometimes multiple boxes at the same time. I tend to not fit in very many boxes easily and find it easier to live outside the box most often.

In my technical theatre course during college the professors (we had 4) constantly encouraged us to “think outside the box,” so much so that it became a running joke, to the point that during a group project we backed a presentation with a deconstructed pizza box (we weren’t planning that, but it went with the box motif).

I moved so often during college that I turned it into a game, how many boxes does it take to contain all my belongings, trying to use the least number of boxes possible. I pride myself on the fact that my friends who worked of the campus moving service called one of my moves, “the easiest ever.”

My course work is kept in boxes, which remain open or unopened depending on the circumstances of the semester, week, or day.

The majority of my swimming gear is kept in a box, made up of meet related essentials and back up equipment; old goggles and caps, extra suits, and racing gear. It’s kept in the closet, just in case I need to grab something quickly (caps rip at weird times). And it’s more convenient in terms of packing for a meet, because even a 4-hour meet involves more than you’d think.

I asked for a new tech suit for Christmas, hoping that I’d at least get one for my birthday. I wore a tech suit for all of my meets last year and learned all too well of the love/hate relationship swimmers have with them. Basically, they’re meant to be tight, too tight even, expensive, and tend to not last very long.

Knowing what I know now I set out to find a suitable option for my wish list, because my now old tech suit has been discontinued, I knew I couldn’t just go down a size or two and feel like I had done due diligence.

I decided to try and be as exact about this as possible, meaning this time look at actual size charts. It sounded easy enough, except it involved number conversions I wasn’t too familiar with (ahem, the metric system) which needed dealing with before I could continue.

Turns out I was wearing a tech suit that wasn’t just too big, it was almost 10 sizes too big, at least according to the sizing charts. I wasn’t going to go that small right off the bat, although I haven’t completely ruled it out eventually.

I found something close to what I was going for, within reason of course, and crossed my fingers.

I opened the box a few weeks later to try it on before my first meet of the calendar year.

The good news is it gets easier to put on a tech suit with practice, but it can still be a pain to do. The not so good news is it wasn’t as snug as I thought it would be, and for a while I thought maybe I had gotten used to wearing suits that are too tight.

I looked at the box (and rechecked my measurements).

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As it turns out that my actual size according to my measurements, as opposed to the size I wear, isn’t even on the box, which I had to laugh at.

It’s just another example of how some people aren’t meant to live within a box.

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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

Not All Pain Is The Same

Chronic Pain effects roughly 3 out of every 4 people with Cerebral Palsy. I’ve written about it before, because I am 1 of the 3 out of 4, and I get questions about it a lot.

I have a long relationship with pain, so long I’m not sure when it began. However, it’s changed over the last few years.

I’ve learned that not all pain is the same.

The pain I feel at the end of practice, a swim meet, or even just one race, is drastically different than chronic pain.

That pain, although usually more intense, fades away.

Chronic pain stays around for the long haul, it may fade, but it never goes away completely.

When I first started going to coached practices I was happy that my pain seemed to disappear as soon as I was focused enough on the task at hand, swimming, keeping my body afloat, while trying not to collide with another swimmer in the lane.

When I changed coaches and adapted a more intense training schedule I focused on the same task, especially since I was now sharing a lane with more than one person, and not wearing prescription goggles. But I also had to learn what a “real” workout involved.

Like, a good workout leaves you sore but able to function the next morning.

Some days it works out better than others, and there have been a few injuries along the way, both swimming and non-swimming related.

Chronic pain, still have the ability to leave me unable to function, but those days have been getting fewer and further between, thank goodness.

I’ve had people ask me if I was possibly worried that I would push myself too hard because I have chronic pain. To be honest I’m not sure what they think when they ask that question, but my answer has always been no.

I know what pain is, I can pretty much tell when I’ve had enough, and when I can’t my body tells me soon enough, a bruised scapula retaught me that lesson, and I won’t forget it anytime soon.

The truth is I take things too easily, at least at times, because the pain that I feel in the moment feels like it may be permanent, and I don’t want it to become permanent. It’s not until the discomfort subsides that I realize I could’ve done better, that I should’ve done better.

Sometimes I beat myself up about it, but most of the time I resolve to do better, or at least try to do better next time.

I may seem like an expert in dealing with chronic pain, but the truth is I’m still learning that not all pain is the same, even when most of it is chronic.

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.  

12 Days Of Christmas, Kinda

There are so many reasons why I hate the start of the Christmas season, at least the commercial version of it. I’m not sure when it started but I was ecstatic in college when I was given an Advent calendar that included the Christmas Octave.

My cousin says it’s because I know too much, that may be the case now, but back then I think it was just an annoyance.

I hate having to buy Halloween decorations in early September, that Christmas movies run 24/7 on some TV stations from October 1st through New Year’s, and the supposed “war on Christmas, among other things.

I look for anything for an escape, at least until Gaudete Sunday, so imagine how I felt when my coach told the group about the “12 sets of Christmas” challenge.

I’ve heard stories about swim practices during holiday breaks, “Grinch week” or “hell week” are common terms, although mostly in younger groups. Usually time around the holidays is devoted to fun games that happen to double as technique work or some sort of cross training, so I thought the sets would be like that.

No.

It was going to be unpleasant, to the point where I would probably hate it.

I tried making the argument that it was Advent and not Christmas, at least at the time. I threw out the “Catholic card,” knowing it wouldn’t get very far but it was worth a try. It wasn’t totally bailing on the challenge, just putting it off. Anything that would buy me a few more days without time trials makes for a better practice.

However, the “12 Sets of Christmas” was to be completed in December. Thus, covering both the Advent and Christmas seasons, more or less. So even if my argument had held up it wouldn’t have been for long.

It did get me to focus less on Christmas and more on what I was actually doing, which is a good thing, and an essential for a 400-yard Individual Medley, for time, among other things associated with swimming well, or at least well-ish.

I survived Advent and Christmas, and the associated swim sets, actually, I think the swim sets helped take the edge off the intensity of the holiday season.

Although I think it’s weird that the Valentines paraphernalia made an appearance during Advent.

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

Learning To Repeat

My hand touches the wall for what feels like the 100th time. This time I got it right.

Then I hear a voice behind me, telling me what I’ve done wrong, well more specifically, what I could have done better.

I’m disappointed, but only for a second or two, because this is why I’m here.

Doing something once is easy, repeating it is the hard part, I remind myself. It’s a piece of advice I was given when I was relearning to walk but it applies here too.

To the untrained eye a swim practice looks like chaos, (and/or completely boring) even though everyone is following a line that runs the length of the pool countless times. It’s for this reason that people think swimming, or more specifically swimmers are insane.

“The definition of insanity is doing the same thing over and over and expecting different results.”

Here’s the thing, the majority of that definition doesn’t apply to swimmers, except maybe the insane part, but that’s not an all the time thing.

People think we’re doing the same thing, over and over expecting the same result.

In reality we’re making (probably small, seemingly unnoticeable) changes to achieve different results.

Then we have to repeat the process.

The hardest part, the repeat.

I’ve done this before, but never swimming, at least not in this way.

Is it frustrating? Yes.

Is it what I want to do? No.

I wish I had a brain that could compute things once and have my body follow, but I don’t have that kind of brain. Not only is it not part of my package, it’s not part of anyone’s package. But that’s not much comfort when your lungs are screaming for air, your muscles are burning, and you still managed to come up short in some way.

I’ve been here before. These feelings are not new. Oddly enough there is some comfort in this, as weird as it seems.

I’m not learning how to deal with new feelings in new situations. That’s a big plus, that my mental energy is pulled in one less direction.

It wasn’t that long ago that I was wondering if I’d ever feel “normal” like I was truly part of a group of people. So, in a way I’m happy to be frustrated because someone noticed that I could be better and wanted to help.

Learning to repeat isn’t easy and it’s not always fun, but when you finally achieve it it’s almost always worth it.

I Can See (It’s Not A Miracle)

I put my goggles on the same way each time, or at least I try to, it’s part habit, part superstition. So, when someone asks me about my goggles, like my coach did in the fall, it sometimes catches me off guard.

“Are those prescription goggles?”

I look down at my rainbow-colored goggles that clearly don’t have prescription lenses.

“You should get some, they’ll change your life.”

I’ve worn glasses since I was in preschool but I’ve always made do in the water; the back line was always wide enough and black enough to see, and after a few laps I can judge my approach pretty well, I know what numbers look like all blurred so I wouldn’t get into the wrong lane, or so I thought.

I looked up prescription goggles online and they aren’t any more expensive than the non-prescription ones, but I still put it off, for some of the seemingly irrational reasons available.

Like, not knowing what my prescription actually was. Honestly, until this process of goggle buying I did not know anything about my glasses. I have a guy who knows and I’m more than cool with that. After I called him and sought his advice I made a reluctant purchase, because they weren’t going to be my ideal goggles.

When they arrived, I looked at them with displeasure; they looked like the goggles most people wear (and now I know why). I spent money on something I didn’t really want and now I was just going to lose them, it was only a matter of time.

I wore them to practice, and I could actually see. I could see the clock, the lane numbers, I could see the walls from further away, and it turns out that black line wasn’t so clear before after all.

(It reminded me of Shelly’s post about her son’s experience with goggles)

I can even see the board after a race, which I always wanted to be able to see, but I really have mixed feelings about it.

But things still weren’t perfect. I still wanted my old goggles for one reason, they’re mirrored.

I’ve worn mirrored goggles since their invention, or close enough. It’s what I like best, and it turns out they do have added functional benefit, like keeping lighting glare out of my eyes. So, I bought another pair of goggles.

They still aren’t what I want but they’ve made things so much clearer for me, literally, so I really shouldn’t complain about it. Truth be told I’d probably still be wearing the same rainbow-colored goggles if my coach hadn’t noticed such a seemingly tiny detail.

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.

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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.