#ILoveMyDisability

There was a time when I’d spend my nights reading blogs, but these days I’m more likely to read threads of hashtags.

#SayTheWord & #StopAbleism2015 are two that kept me up late at night scrolling though people’s thoughts. #ILoveMyDisability is just the latest one.

I thought I’d share a few of my favorites, in no particular order, for no particular reason:

 

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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.

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.

To Successfully Succeed

Confession: I can’t believe I haven’t written about this before. If I have and someone knows where the post is, would you be kind enough to post the link in the comments section. I’m not that great at virtual organizing so even if I did write something I can’t find it.

 Katy asked,
“How do you define success?”

 My answer to this question has very little to do with the fact that I have Cerebral Palsy, but I’m sure it colors my answer to some extent. I hope my answer gives you more insight into the fact that people with Cerebral Palsy are more like those without Cerebral Palsy than they are different.

This is question that’s like, “Describe your ideal summer vacation,” the answer changes depending on where you are in life. At 5 your ideal summer vacation is going to D!sney World. At 25 you’re just hoping you’ll be able to afford a summer vacation (we won’t go into how I feel about summer vacations these days).

If you asked the pre-college me & new college student me I would define success as being famous and having everything that goes along with it, or at least all the good parts you can think of (not the bad parts).

If you asked my recent college graduate self what my goals were she’d tell you she just wanted to finish the final projects and graduate. I never wanted college to end but I wanted to workload to end. I guess I’ve been a sucker for community longer than I thought.

These days my definition of success has changed a lot. I don’t want to be rich or famous. Nor will I feel unsuccessful if neither of those things happens, especially since that’s not how I chose to define myself anymore.

These days success comes in a variety of different packages.

A work day that involves minimal paperwork and I’ve reached daily goals I’ve set for myself as well as reaching the staff wide goals? Success. Making positive strides to live my word for 2013? Success. Networking to further my business? Success. Being able to pay my bills and have my insurance pay what they’ve promised? Success.

Things seem simpler now, not to mention more depressing now that I’ve written it, but it’s not really. My priorities have changed. It happens with most people, I’m guessing. It would be awesome to be able to travel more or take more “time off” but it’s not in the cards, at least in the recent future.

In terms of concrete things that I would like to be successful at, I would love for my business to do well enough that I’d be able to quit my day job and still be able to support myself. It would be nice to be able to be in a healthy relationship and maybe have a family, but right now I’m not planning anything other than being able to take care of myself. I’d really like to be one of the few small business success stories out there (Inquire if you dare!)

On the first day of classes every semester at least one of my friends would write, “I will do my best to successfully succeed,” it’s been something of a manta ever since. There are days when success is smaller than others, but it’s still success. What I really want is to succeed successfully throughout my life, meaning I want to do well without causing harm to anyone else, self-included.

*A similar version of this post was written on March 20, 2013

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.  

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.

There is a senate resolution officially designating March 25th as National Cerebral Palsy Awareness Day.

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

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

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

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

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

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

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

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

Not Rare, Nor Diseased

Rare Disease Day is the last day of February. Around that day a few people sent me messages wishing me a “Happy Rare Disease Day,” I appreciate the sentiment, but it’s uncalled for.

Although the media, even credible news outlets can mess it up.

Cerebral Palsy is not a disease.

It is a neuromuscular disability that effects movement, like motor skills.

It can also affect senses, like hearing and/or vision.

It is permanent, but symptoms can change.

It effects each individual that has it differently.

There are 4 main types of CP.

It can affect anywhere from 1-4 limbs.

There are treatments, but no known cure.

It is not rare.

The prevalence of CP is 1 in 323 U.S. children, and over 17,000,000 people worldwide.

It is the most common childhood disability.

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It Takes A Village

I’m pretty sure almost everyone’s heard the saying “It takes a village to raise a child,” at least once in their lifetime.

Earlier this month I had to make a phone call. This wasn’t any typical call and it was meant to be anything but social.

Ever since Botox hit it big as a medical treatment (non cosmetic) it’s been circling my head like a bird. For the past two years the Botox discussion has becoming more frequent topic of my appointments. I’ll admit I was the first one to bring up the subject when it became an option, or I thought, now that someone else has been bringing it up I’ve been doing my homework on the subject and I’m more skeptical about it than ever before. I wanted to attempt to put the Botox question to rest once and for all so I made a phone call.

I don’t usually bring up my surgical history on a simple phone call but this was one of the exceptions. I knew I wouldn’t talk to my doctor personally without it and I wanted, and needed to speak to him personally. Of course the day I call he’s in surgery all day. Why do I always call offices on surgery days? You’d think by now I’d know to make some kind of chart to keep these things straight. I hate calling on surgery days because there’s a lesser chance of getting a call back without some kind of hassle. Most of you may not find this to be true and I’m happy that you have not had to encounter this; however I have found this to be true. Just my luck I guess. So I was pretty close to shocked when I got a call back that night.

Now I have to take a minute to explain my relationship with this particular doctor and what this has to do with anything else in my life, particularly the title of this post.
I’ve known Dr. L for over 20 years, basically my entire life for those of you keeping track. I don’t see him often, but when the shit hits the fan I often consider his opinion, whether he’s called or not. He’s basically like “The Godfather” of my medical life, although I’m pretty sure he’d be uncomfortable being called that. He’s basically the person who’s had the biggest impact on my life as I know it, parents not included. So his opinion on things that everyone has varying opinions on really matter to me. Not to mention I don’t want to do something that would do more harm than good.

Once I have him on the phone I forget my entire bit and ramble a little too much. He probably didn’t mind, or even notice, but I was mentally kicking myself. So I explain the situation to the best of my ability, which at the moment wasn’t anything close to my typical level of articulation.

He didn’t tell me what I wanted to hear but he told me what I needed to hear, which is just as good. The Botox decision is purely mine. He did remind me that it is a temporary treatment. When I said I am always looking for something permanent, O.K. so I pretty much blurted it out in an effort to get a more definite answer, he said I should look for a surgeon.

So I kind of got the answer I wanted to hear….
It’s kind of nice that he considers me to be “adult enough” to make my own decisions.
(That may not be how he intended things to go but that’s how I’m choosing to take it)

With business out of the way we moved on to other things. It was mostly me, but he went along with it. I’ll spare you of all of the conversation because most of you reading this don’t know my medical history, so this could be somewhat shocking. Also, I don’t want to violate some kind of privacy boundary between him and me. If you want to know more of the story, leave me a comment and I’ll write about it at a later date.

The thing about knowing someone for most of your life, without them being considered part of your family is they still have memories of you with their own special twist. You wouldn’t think an “outsider” would have one such memory never mind a few.

As he was telling me a story about myself as a toddler, one that I’d never heard before I might add, I have a funny thought. “It takes a village.”

Anyone who’s ever spent any significant time around children; parents, teachers, nannies, etc, will tell you that it does take a village to raise a child, or some sort of communication and cooperation with everyone involved in the child’s development, at least. I hard to learn this first hand, I’ve sometimes called it “the hard way,” working in childcare. Whenever someone asks me what the hardest part of the job was I will, almost always, say the parents. The families I served were pretty amazing, but it wasn’t always easy building a relationship with them. It’s like friendships; some are easier to build than others.

I’ve always known that Dr. L played an important role in my life. I just didn’t realize how much until I talked to him again and he just happened to share something more personal, it really was a cute story and it would be just as cute even if it wasn’t about me. He’s part of the “village” that helped raise me and become who I am today. It’s sort of unreal to be able to admit that. A few times I’ve had the thought of what would have happened to me without him. It’s true we could’ve found someone else. But then would things turn out as well? How many people can point to one person and say they’ve probably had the biggest impact on their life? I don’t think the number is really that high, although some might disagree. I think I’m one of the true people that can point to one person and say that without them things would not be the same.

Realizing this connection gives me hope that I’ve had some kind of impact on the “My Kids.” I know I did, but it’s mostly due to the feedback I got from coworkers and parents. I wonder if they’ll remember me when they get to be my age, and I doubt I’m alone in this situation.

It’s really true what they say, you never know what kind of impact you’re going to leave on someone, especially a kid. It really is an amazing thing.

I’m so proud to be part of hundreds of “villages.” I hope I served them well.

*A similar version of this post was written on October 31, 2008