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.

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Free The Feet (part II)

I’ve readjusted to life with an AFO, I guess. I’ve found a few positives to it too. Like having “walking shoes” and “sitting shoes.”

It may seem like every shoe loves dream but it took a little accepting from me. I hate having shoes everywhere so the fewer shoes to have around the better.

When my friend was ordained a few months ago I knew I needed to buy shoes, because I literally had nothing (and when a friend is getting ordained you make exceptions for them).

I found a pair of shoes I actual liked and didn’t worry about whether or not I could balance in them. I just made sure they fit my feet and I could get them off quickly if I did have to get someone in the event of an emergency.

They aren’t the perfect fit but they did the job and with any luck they’ll continue to do the job on future occasions (which is another requirement for me when it comes to footwear).

A common topic you’ll find around the internet is CP & footwear; in fact, there are blog devoted to it.

There are many other factors to consider besides, “do they have my size?” or “these are a nice color.”

In fact, those are often the two things at the bottom of the list of requirements.

Can I afford to buy two pairs of shoes? (Because sometimes bracing requires a bigger shoe, or your feet are literally 2 different sizes).

Can I manage to fit into one pair of shoes? (See above reasoning)

Can I modify them as much (or as little) as I need to without extra cost?

Can they last me more than 5 minutes?

Can I walk in them comfortably?

Can bracing fit in them without much added time or damage?

Can I wear them safely without added support? (Because sneakers aren’t exactly dress wear)

Do they have any potential for creating pressure wounds?

And on and on, and on……

While I may never have a “Cinderella moment” with any form of footwear I’ve learned to appreciate the “little victories” when I can get them.

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.

Kilimanjaro

I love mountains.

I love looking at them. I love wondering how many people are climbing them at that very moment. I love thinking about how many people have climbed them. I love thinking about how many people will be repeat climbers (or hikers).

Even so I have healthy limits.

I know portions of Rainier are attainable as are Olympus.

Kilimanjaro is off limits.

Really cool, but off limits.

I hate treadmills.

From the first time I was ever put on a treadmill I’ve hated them. For some reason it became the first step to attempting to transition a patient from PT to a self driven exercise program, kind of hard when no one could come up with anything other than a walk on a treadmill.

When the treadmill first came up while at the gym, because we usually discuss to some extent before do, I divulged my hatred for the machine, it bores me to death. I need to be entertained to some extent while on a treadmill.

If I could pull an Oprah and play scrabble on my iPad while walking that could work.

But that would require an iPad.

And the ability to spell.

Maybe that wouldn’t work so well.

So the treadmill is used sparingly, because the word, “bored” is right up there with “can’t” or “no.”

Even so every few weeks or so I get on the treadmill (with the trainer or exercise physiologist standing by because I will get off) because it’s one of the few ways my glute muscles will actually get going (or “fire.” “Firing” muscles are always a good thing, so I’m told)

What is done on the treadmill is usually left for when I’m actually on the treadmill, and most of the time it’s for very good reason:

“I call this Kilimanjaro.”

(I clutched the treadmill to override the urge to jump off of it)

Apparently “Kilimanjaro” means for every minute on the treadmill you increase the incline by one. Then you do it again.

(I think, I deliberately wasn’t watching the settings change. I just walked.)

It takes about 20 minutes.

(The longest I’ve EVER been on a treadmill. EVER)

Do you want to know the most shocking part?

I didn’t die. I didn’t even want to die by the end of it.

I just wanted to be done for the day.

(Which didn’t happen)

I’ve done my Kilimanjaro. What’s yours? Have you done it yet?

*A similar version of this post was written on January 28, 2011

Cerebral Palsy: The Review

Another Cerebral Palsy Awareness month has come to a close. In year’s past I’ve come up with some kind of “wrap up,” this year I have nothing. The tank is empty.

Note to self: do a better job organizing posts to avoid blogging in circles.

Another note to self: Make plans.

Additional note to self: keep a file of topics and questions.

Here’s A Complete Listing Of This Year’s Posts:
End The Word
What Is Cerebral Palsy
The Matter Of Privacy
Athleticism + CP = ?
Things That Make You Say Ow
BYOC
Life Without An Off Switch
Hide & Seek
CP is a Finger Print
Is This Thing On?
Of Ice & Pies
Gifts Of CP
It’s Not Easy Being Green
CP See, CP Do
Brain Matter(s)
Confessions From A CP Adult
An Ode To Sweet Caroline
Cerebral Palsy Awareness Day
Is Disability A Choice Or A Destiny?
Acknowledging Your Personal Puzzle
A Deck Of Cards
PwDs Are People Too

Lists of posts from years past:
What Is Cerebral Palsy Anyway: Review
March = Cerebral Palsy Awareness Month + Review
HAWMC Recap

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

Brain Matter(s)

I remember my 1st meeting with my physiatrist. I didn’t want to be there. I had already seen a physiatrist I liked. I was only there because she wanted me to consider having him take me as a patient instead, but he was on time (not doctor time, actual people time) and he seemed to wanted to be interested in all of me, not just parts.

After his “litany of questions” (which is really what he called it) he said something that caught me off guard.

“Now if I were to look at a CT scan of your brain I guess I would probably see……”

I never put much thought into what Cerebral Palsy had done to my brain, mainly because the focus had always been on my muscles & bones, I wasn’t diagnosed with a learning disability until my early 20s & even then I didn’t think it was CP related, learning disabilities are in my family so I saw it as something that made me more “alike” than different.”

Admitting that this postulating what my brain looked like was what sealed the deal in agreeing to be under his care would be a lie, but it did play a part in my decision.

I haven’t had many CT scans in my life, and only one of my head, but they were looking at my sinuses, not my brain. Intrigued I asked if he would be ordering a CT scan of my brain, adding that I wanted to see it for myself.

No

Why?

Well OK then.

For the record, I still want to see what my brain actually looks like.

It’s hard to understand a condition that you can’t always see the root cause of, never mind try explaining it to anyone else, no matter how educated you are on the subject.

People like to be able to see things, to touch them, hear them, anything tactile really.

Cerebral Palsy isn’t like that, instead it’s like trying to find the leak in a pipe. You have a puddle on the floor from the water dripping from the ceiling but you don’t really know where the water is coming from, except with CP you may never be able to actually see the true source of the leak.

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

Let’s Talk About Porn

Having a blog and a podcast is an interesting experience. Granted I didn’t think I’d be podcasting for that long. I thought it would be a sprint rather than a distance event, which this venture has now seemingly turned into.

I wanted to share our latest recording, and for a few reasons (1) it’s an important topic, (2) I didn’t feel the need to write down what I’ve already said, (3) I want your feedback on the topic.

I’ve talked about inspirational porn before but being able to have a mainstream TV show address it in a relatable way opened a door for me to be able to see the topic in a different way.

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Listen to H-E-R–HERO

How do you feel about inspirational porn?
Where or how do you think started inspirational porn?
Do you think inspiration porn started with Tiny Tim or someone else?
Did it start with the saints or maybe the life of Jesus Christ?
Do you think we’ll ever be able to get rid of inspirational porn altogether?

 

The Clichés Of CP

There a lot of crazy (and very untrue) things you hear when you have Cerebral Palsy. In fact it’s often hard to pick just one thing that’s the most untrue. It’s actually pretty funny now, but as a kid it gets really obnoxious. Clearly there are a lot of people out there who don’t know a lot about CP, or at least what they should know.

I wish I could divide comments by age and background; unfortunately they’ve come from all ages and professions (even doctors).

One of the most common things I get is that we’re all retarded. Yup, I’ve had someone come right out and ask, “So are you retarded?” right after I tell them I have Cerebral Palsy.

While it can be true that individuals with CP can also have cognitive issues it’s not true for everyone. Hence why I say individuals with CP, sometimes all people in the CP community have in common is having a diagnosis of CP.

I’ll just say one thing on the word retarded. If you use the word do yourself a favor and update your vocabulary. You’re not only insulting others, you’re insulting yourself. You may think you’re cool, in reality, you’re an idiot.

Another thing I get a lot is, “Are your legs broken?”  I’ve gotten this question (& even phrased as a statement) for longer than I can even remember.

According to my mother I once came close to beating up a boy over it, and I swear I don’t remember this at all. My legs are not broken. My body works differently than yours, which does not automatically mean “broken.”

“Where is your walker/wheelchair?” Not everyone with CP uses an assistive device. I do use a wheelchair on occasion but not on a daily basis. I’ve been out sharing a meal with someone and when I get up from the table they ask me if I need my walker.

Use your powers of observation. Look around. If you don’t see an assistive device nearby it’s probably safe to assume they do not need one (at least in that situation). The same goes for asking, “How do you walk?” if you don’t see an assistive device around, they walk just like you do.

“It’s amazing what you’re been able to accomplish.” I admit this is probably the newest most common statement and it takes me a while to realize what people are talking about. In fact I’ll often ask them what they mean by that; just because CP is seen primarily as a children’s condition that it goes away at 18. At the same time we’re not much different than our average peers, it was expected of me to go to college, graduate, and get a job, and support myself. It’s not amazing, it’s normal.

“You’re most likely to old to see any improvement.” This one comes primarily from medical professions, and it’s probably the most wrong. It’s true that there are no (or few) studies of individuals past the age of 18 but that doesn’t mean making gains doesn’t happen.

I learned to jump, climb stairs without assistance, and pulled socks off my feet standing up (among other things) in my 20s. It’s more a matter of practice and guided coordination than actual ability.

This is just the short list of things I’ve heard about my condition. I’m sure I missed a bunch. Feel free to include your own if you’d like.

*A similar version of this post was written on April 7, 2013

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.