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.

Sunday Selfie

I’m not a fan of selfies. I prefer to be behind a camera taking pictures or have someone else that I trust behind it. I’m a fan of getting the right angle. Since the weather is getting cold I thought I’d post one of my favorite warm weather selfies.

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3,000 Words

They say a picture is worth 1,000 words, so this post will be 3,000+ words.

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Why do these pictures illustrate my health focus? Because there are still numerous unnecessary obstacles for persons with disabilities but there are countless people trying to change that, including myself.

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.

Motivation Monday

I admire people who can live by one motto for most of, if not their entire lives. Mainly because I am not one of them. I’m the person who had seemingly random quotes posted around their dorm room, and sometimes down the hallway of their apartment.

My motto has changed, and changed often, but there’s one I keep coming back to in the last year and some.

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I like this motto for a few reasons. The first is that it’s simple, at least in understanding.

The execution can be as simple or as complicated as you want it to be.

In a way, it implies that although you can have a bad day it can be a singular thing.

There’s acknowledgement of history but greater hope for what can come.

It can be applied to short and/or long term goals.

There’s the implication that there’s just as much to be gained from the journey to reach a goal as well as the goal itself.

It reminds me that my best days are ahead of me if I want them to be and work for that ideal, no matter what others may say or think.

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.

One Foot

went in front of the other, and then repeated the process.

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1 year, 1 month & 1 day after I took my last steps.

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I haven’t stopped since.

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*A similar version of this post was written on October 11, 2011