Normal Is Nice

Fall means a season of follow ups, and usually a mix of emotions.

The emotions are still there, but I’ll get to that later, or not.

The follow ups are still there, and they will be for the foreseeable future, but they’re different.

I was sitting in an exam room waiting, actually I was staring at the sink, when I thought of a poem.

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Yes, I was waiting a long time. Yes, I do get philosophical the longer I wait.

I remembered waiting to be told I had healed enough that I could stand up, and then feeling pain shoot up my legs as they took on my body weight. It was pain, the very reason why I put myself though all of this, but it was different pain, and I was happy about it.

As the weeks of rehab turned into months my feelings towards standing went from happiness to anger, as happened in every stage of my recovery process.

Every follow up I’d wait, and wish someone would find something that would make me better, a more improved version, faster.

That never happened, at least not yet. And no one ever declared me “recovered,” not officially, that came with some self-acceptance.

I sat in the exam room, again, but with a different expectation.

The expectation of normal.

“Normal is nice,” I kept thinking.

And it was, the follow up went as I expected, and I wasn’t upset or overly happy over it.

It was normal, and it felt nice, to be OK with this (not so) new phase of my life.

Regardless of how you feel about standing, normal is a nice place to be.

Defining normal, that’s the hard part.

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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.  

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.

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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.

Lifeguards Do More Than Save Lives

I always found it odd when people said I was “more than up for the challenge” while I was growing up, especially when I really wasn’t given a choice in the matter. However, those types of voices get fewer as you get older, and I’ve discovered that I really do like a challenge.

One day while leaving the pool I noticed that there would be a swim challenge. After looking at the flyer, and checking my unreasonable expectations at the curb, I signed up.

I’m not the biggest fan of lifeguards, especially ones I see all the time and they act like they can’t be bothered by anything. So, my least favorite part of the swim challenge was that a lifeguard had the sign off on the number of laps I swam each day.

There were a few problems with this:

  1. No one other than the swimmer was counting the laps.
  2. Most of the lifeguards were clueless about this challenge so asking them to sign off came as a surprise.
  3. Keeping the record sheet dry was difficult, to say the least.

I had a feeling from the beginning that I wouldn’t reach the end point of the virtual swim but I still held out hope that I just might make it anyway. At some point, I realized there were few days left and I wasn’t even going to make it to the half way mark. I was really thinking I would make it at least that far.

Feeling defeated I thought about taking my foot off the gas and taking a few intentional rest days, but I also wanted to see just how far I would get by the end date. On one of the last days I got out of the pool and approached the lifeguard after writing in my laps.

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I didn’t reach my goal but that lifeguard refueled me, which people need once and a while.  It took some of the sting out of not reaching my goal and encouraged me to try if the opportunity ever comes around again.

Lifeguards are on deck in case a life (or more) needs to be saved but sometimes they don’t just do that, and that’s just as important.

The Gift Of GIFs

Graduate school has officially taken over my brain. I can’t formulate my own thoughts without consulting some set of instructions and analyzing them to death before doing anything.

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And even then, nothing makes sense.

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I embark on the assignment anyway praying I’m on the right track furiously texting classmates under the theory that, “if most of us do the same thing, we’re not wrong.”

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I still lose my mind the second someone says something that I consider to be criticism.

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Then I question every decision I’ve ever made in my entire life.

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And then I swear it isn’t worth it.

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In the end I get up the next morning & do it all again.

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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?

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

An Ode To Sweet Caroline

Almost a year ago I (finally) met my new comrade, named Caroline.

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Yes, my wheelchair has a name.

You honestly didn’t think I’d let a CP Awareness month go by without a post about wheelchairs, did you?

I came across a vlog recently that sums up some of how I feel about wheelchairs, and the choice to use them.

I don’t know why people have such strong feelings, that they feel need sharing, about something that should be a personal decision. For me, a wheelchair isn’t a hindrance. Instead its independence.  Part of the reason why I gave my chair a name is to make it (or should I say her?) more approachable. A wheelchair isn’t a symbol of loss, it’s a symbol of modification.

Life Without An Off Switch

There are a lot of analogies that can apply to what it’s like to live with Cerebral Palsy.

For a long time my muscles were like a phone dialing the wrong number.

Then I started telling people I was still working with dial up while they had Wi-Fi (thanks to John W. Quinn for that inspiration).

More recently I’ve referred to my muscles, or more accurately my nervous system, as not having an off switch.

All of these analogies can apply to my experience, and I tend to use them interchangeably. However, there are probably a few more that would apply too.

The only time all of my muscles are ever fully relaxed is during surgery, and possibly when I’m asleep but that’s a stretch.

There’s a sense of pride that comes along with being able to say that you’re “firing on all cylinders,” but there’s a downside to it that doesn’t get talked about as much as it should.

Always being “on” means it’s hard to get adequate rest, making you prone to injury (even weird ones) and making it harder to recover from injury.

There’s also the matter of fuel aka food.

If you use more energy you use more fuel to get that energy.

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I often joke with my teammates that although I don’t always swim the same distance they do I’m actually working at least twice as hard as they do, except I’m not always joking.

Asking my body to sprint is like asking a car to go from 0 to 60 with the parking brake on. I start off OK but I’m quickly left in the dust. Honestly if I can see the feet of someone in front of me than that’s a success, at least for me.

Is it frustrating? Sure. But I’ve made such a dramatic change in my training that I wouldn’t have even considered swimming with these people a year ago.

I’ve made so many changes in my life in the last year that being able to be within striking distance of someone else’s feet is really an accomplishment, if you’re looking at the bigger picture here.

Living without an “off switch” can be a challenge and it always seems to be a learning process but being able to put it in a context, for me that means within swimming, helps solidify it more than I ever thought possible.

What Is Cerebral Palsy?

For the past couple of years I’ve devoted my writing efforts during March to Cerebral Palsy.

Why?

Because despite being the most common disability among children very few people know what Cerebral Palsy is. Now for a medical condition that was first studied in the 1860s, (but probably first identified during the time of the Ancient Greeks) the fact that the everyday person probably doesn’t realize that they’ve probably at least seen 1 person with CP during their lifetime is, well, I don’t know what to call it.

Sad?

Disappointing?

Shocking?

Not surprising at all?

All of those, and then some more.

There are people who have heard of it but have more misconceptions than actual facts about what it is and what it isn’t.

And honestly, I wonder if it would be better if some of those people knew nothing at all, because their misconceptions run so deep and are so flawed that it might be better if they (or rather we) started from square one.

So here I go again.

What is Cerebral Palsy (CP) Anyway?

It’ll get into the technical aspects soon but I wanted to start with something simple for today:

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After I get into the basics I’ll get more personal, probably, because I can’t speak for everyone with CP; for two reasons (1) Cerebral Palsy effects each person that has it differently. No two cased of CP are exactly alike. (2) Also I don’t want to pretend I know everything so I can’t in good conscious speak for everyone who has CP. That just wouldn’t be fair to the CP community or everyone wanting to know about CP.

In previous years I’ve taken questions from readers and it’s been overwhelmingly positive so I’ll continue with that tradition, because if it ain’t broke….

If you have any questions, feel free to leave a comment or fill out the contact form. You can even send me an email if that works better for you.

Until then…….

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*A similar version of this post first appeared on an old blog on March 1, 2016

About Abandonment

One of my favorite posts from another health advocate comes from Jessica. Although the post deals with illness almost all of it can apply to living with a disability as well, probably because there’s a misconception that disability is similar to being sick.

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Read Jessica’s full post.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.