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

A Deck Of Cards

I was sitting in a prospective student orientation hearing school statistics. In an effort to create a diverse school environment administrators had percentages they tried to maintain. It didn’t take me long to figure out my admission would be a slam dunk.

And it was. I was admitted; attending was another story.

It’s my first memory of thinking that my “different-ness” could be an asset.

It took me a few years to realize that this was indeed a disturbing thought for a 4th grader to have. That doesn’t mean that there were/are situations where this fact holds true.

There are times when I’ve tried to use having a disability to my advantage. Once you let the genie out of the bottle there’s no getting it back in, so you have to be careful..

 Life consists not in holding good cards but in playing those you hold well.”–Josh Billings

 Some time during high school I realized that my life was like a deck of cards. Sometimes my disability can be my ace in the hole. Sometimes it’s a joke(r). Other times it’s just another card in the deck.

I’d like to say that most often it’s just another card in the deck. Honestly that’s what I’d prefer. However that’s not how the world works, at least not now, but maybe someday.

I don’t walk around highlighting the fact that I have Cerebral Palsy. Just uttering the words “Cerebral Palsy” leaves people dazed and confused. It does open the door for educational moments but most of the time I don’t have the time, or the energy.

When it comes to day to day living I keep things as general as possible, but it’s pretty obvious I’m in the “otherwise abled” category. I prefer to see myself as just another one of “the guys” for a lot of reasons; a big one being I don’t want to hold my disability over people’s heads.

Think of “The Boy Who Cried Wolf” story we’ve all heard. If I brought up having Cerebral Palsy all the time what would that do? It would raise awareness, but would that be for a greater good? I doubt it.

There have been times when I’ve been looking for employment when I wondered if full disclosure would actually work in my favor. I mean companies put disclosures at the end of applications for a reason (& I’m sure they have quotas to fill, just like that school).

There have been times when I really wanted “that” job so the thought of using my different-ness as an asset crossed my mind. But how does someone do that without the potential for backfire?

I’d rather be the best one for the job when compared to other candidates. Not the candidate that filled a quota. I really don’t want to be the person who can’t do a job that everyone knows was a pity hire. (I’d rather not have a job if that’s how I get them)

Having a disability does leave room for other abilities to develop. It’s one of the best reasons to have a disability, in my opinion. As tempting as it is to broadcast my disabilities/abilities for my own advantage, it’s more important to show what I can do and let the work speak for itself.

Life is a deck of cards. Play them well.

*A similar version of this post was written on March 6, 2013

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.

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.

One Word: 2017

Build. Chance. Providence. Transition.

What comes next?

Endurance

At least that seems to be calling me.

There are a few obvious reasons:

-Attempting to become more of a distance swimmer, because although a 50m doesn’t seem like a lot of work it can be just as hard as swimming a mile. I need the endurance, literally.

-Although I’ve made it through the bulk of my degree program I’m really just getting to the hard stuff. I won’t be pushed out of my comfort zone I’ll be blasted out of it, no matter how much I prepare.

The not so obvious reasons would be:

-Starting a search that would lead to an actual career.

-Basically become better at “adulating,” because I’m (hopefully) going to be an adult for a longer period of time than I was a kid.

-The older I get, even though I’m not that old, the more energy I need to get things done. I’m not just talking about physical energy but mental and emotional energy, probably even more so than the physical aspects.

-Developing endurance will give me the opportunity to have more time to devote to one thing at a time, hopefully.

“Do you not know that those who run in a race all run, but only one receives the prize? Run in such a way that you may win.”
-1 Corinthians 9:24

One Word: A Review

“I think this year will be easier to tackle if I just call it what it is from the get go, rather than being in denial for an unspecified period of time.”

When I wrote that last year I truly had no idea what I was getting into, other than I was being secretly overly optimistic.

Transition was my word for 2016.

And boy was it.

All the things I thought might happen did:

-I became one of the “older” students on campus.

-I’m now more an advisor than an advisee.

-My degree program has a new director, who has made me think more about my potential impact for the Church, and in the best way possible (I think, I hope).

-I’ve learned more about myself when it comes to achieving goals.

-I’ve tried to enjoy the steps along the way while keeping the end in mind, rather than let it become my sole focus.

And then some:

-I changed my schedule to better fit the life I want instead of worrying about what other people might say about my motivations.

-I’ve been trying to put school as the priority, which means devoting my mornings to coursework rather than feeling “awake” enough to do it.

-I joined a swim club, and although it’s been something of a culture shock it’s been overwhelmingly positive. There are still times when swimming sucks but that’s bound to happen no matter how ideal the situation is.

-I ventured into podcasting, thinking it would be a one-time thing but it’s becoming an actual venture.

-I’ve actively participated in most of the changes in my life this past year, rather than having the change still occur with resistance on my part.

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.

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.

Please Get Out Of My Kitchen

I was supposed to write an open letter to my worst (or best) healthcare provider but I’m going to do something a little different for two reasons (1) it’s been an interesting few weeks with my and various provider offices and (2) I can’t find the post I thought I had already written on the subject.

Instead I kept coming across a different post that expresses a similar sentiment but better than I could have done in letter form (at least that’s what I think).

I wrote this after yet another appointment that left me frustrated and defeated. I was also somewhat younger than I am now, yet I don’t think I would’ve done a thing differently if I was in the same situation now (although I don’t think I would’ve had the choice either).

I was still months away from one of the biggest days of my life (so far) after waiting months to just to get to the point where I was months away from one of the biggest days of my life. It wouldn’t be an understatement to say that the waiting had pretty much consumed my life.

Looking back on this, since I have a lot of it in writing, I can’t believe I actually lived through this, and I mean that literally. You know the saying, “when you get to the end of your rope tie a knot and hang on”? The knot was getting loose.
____________________________

Technically I’m still under the care of two surgeons and technically two will be performing my surgery, but I haven’t met that second guy yet. Although I do consider one mine and the other just an extra opinion, and no I won’t say who is who, mamma didn’t raise no dummy.

Plans for surgery are still full speed ahead, although not necessarily very quickly.

Even though the plan hasn’t changed I still have plenty of time to get more opinions on the subject, whether I like them or not.

I recently went back to the surgeon that wanted a lock strap put on my AFO because he thought it would help my crouch, just to see how I would like it (I hated it, and so did everyone else, except him). We had an interesting discussion. Now he says he would do surgery, but not to the extent I’m planning on. He told me it’s basically my decision, but he would only do surgery on my right side, because the left side doesn’t look bad to him (even though test/studies say otherwise).

He also expressed concern about my age (AGAIN!). In case any of you are wondering 25 in the CP world is pretty much the equivalent of retirement to a nursing home.

How the conversation usually goes:

“You’re not a kid anymore.”

“I know.”

How I’d like the conversation to go:

“You’re not a kid anymore.”

“I know I’m not a spring chicken, but can we please get past that.”

“Sure.”

Is that so hard?

At least Dr. who-I-hope-will-do-my-surgery-says, “You’re older than the oldest patients that have had this, but only a little.”

O.K. not the most positive thing, but still more positive than what I usually hear from other doctors. I’ve also heard, “I’d like to help you, but I don’t see anyone over fourteen,” of course this was after I’d been in his office for over an hour. Nice right?
(Although I do like the guy so if you’re in the area and need an orthopod for your kid let me know)

Dr. “You-know-you’re-not-a-kid” also expressed concern that it would be a long recovery and the surgery itself would be fun for him to do but rather painful for me. (Because I wouldn’t think of such things on my own, and I haven’t thought of that for months) He also said I’d be “stuck here” for a while so if I wanted to go away again that would be out of the question. Recovery would be twice as long, 12 months instead of 6. He finished with, “If you do this, this will probably be it for you.”

I don’t think I need to go into how much is wrong with those statements from my point of few, but I want to anyway.

1) I’m already in constant pain so intensifying it for a while is worth is if there’s even a chance I could be in less pain, or pain free, once recovered.

2) I’ve thought about how hard and painful recovery is going to be. I’m not stupid, Nor am I afraid of pain, surgery, or intensive PT. I’ve done it before and I can do it again. I retained my entire body to do things people take for granted at 3. I think I can handle it at 25.

3) I want to do this so I have a chance at going away again, and hopefully out of the country at that. I’d rather be “stuck here” for a while instead of “stuck in a wheelchair” in five years.

4) I feel so bad now there a good chance I’ll feel better sooner than a full recovery of 12 months. There’s a reason why it’s a projected 12 months and not a definite 12 months. He of all people should know since I recovered faster from my last surgery faster than he anticipated.

5) Let’s let advances in medical science and I decide what’s “it” for me, thanks.

But it’s in my head now, should I just have surgery on my right side? The right needs more work anyway. I might just end up needing to have the same thing done on the left anyway. Should I take the risk of less?

My first instinct is to just have it all done at once and rebuild. It makes more sense and I’d rather do everything so we don’t need to go back and fix what we should have the first time. But now the other thought is there.

In addition to this new opinion, or rather changed opinion (?). I still have to get a second opinion, at the request of the surgeon who I’d like to perform my surgery. So I have one more opinion coming my way, at least.

I’m slowly coming to terms with the fact that my surgery is scheduled for fall. Actually I might even be starting to see this as the best thing. I realized I don’t want to be in the hospital in the summer, either type of hospital. I don’t want to be home on the couch without having the option to go out and enjoy the weather either. So if you remove the summer months from the calendar, that makes the time frame more manageable. Granted my thought process might chance in 5 minutes, as it usually done.

Have you ever heard the saying, “Too many cooks in the kitchen?” I’ve officially reached the point where I have too many cooks, and I’m the kitchen.

I have just one thing to say GET. OUT. & SHUT. UP.

*A similar version of this post was written on March 20, 2009

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.

The Other Kind Of D-Day

Here’s a thing about having Cerebral Palsy, most of us don’t remember our own personal “D-Day” (otherwise known as the day we received our diagnosis). CP is typically diagnosed in infancy or early childhood. Therefore, it’s rare anyone remembers their actual diagnosis.

Having CP (or a similar disability) it’s not D-Day that gets you, it’s the acceptance process, which has not clear beginning or end for most people. It can be a daily thing, or not.

Plus CP is unique to the individual so it’s pretty difficult, if not impossible, to predict what a person’s life will be like as they age with CP (plus there are very few studies that deal with people over the age of 18 with CP).

A few years ago, I was asked to write a letter to my younger self since the prompt for today was to write a letter to ourselves on “D-Day” I thought I’d look back on the first letter and see what still holds true to life with CP, even if it has more to do with acceptance & advice.

Dear Self,
You were not dreaming when you opened your report card first quarter of freshman year and realized that you FINALLY made the honor roll; just when you stopped trying and were going to a school that didn’t believe in the honor roll. Apparently, you’re going to take the “grades aren’t the end all and be all” approach right up to the line you promised yourself you’d never cross again. You should try harder, at least turn your assignments in (on time, or at all).

Pretty soon you’re going to have a conversation with your best friend that will make you laugh. What you really should’ve done is seized the opportunity for yourself. It’s not awesome when you know the administration is probably using you to help the school’s recruitment efforts without asking you first. But you shouldn’t have laughed it off so easily. Instead you should’ve looked for the potential opportunity in it. Who cares if you’ll only go to classes on average of 4 days a week your senior year?

You’ll carry the emotional scars from middle school with you forever, but you’ll continue to reconnect with grade school friends and realize you’re worth more than the girl piranhas gave you credit for. The good news is you’ll rarely ever see them again and when you do their lives look far from fantastic. Feel free to mentally gloat for a few minutes, you’ve earned it.

Also, you’re a little bit of a nerd. Own it. You’re with the free thinkers now, not the cookie cutter (alleged) “good Catholic girls.”

Having a gym locker once a year isn’t going to be as great as you think it’ll be. You’ll never get it open yourself. It’s not like you’ll have a lot of books to carry around anyway.

You’ve figured out by now that your mom went overboard requesting accommodations for you, and you’ve ditched them on your own. Luckily no one will press you on it since everyone (with the exception of the administration during open houses) sees you as typical and capable. Enjoy the feeling while you can, because it won’t last forever. In fact, your first year of college with feel like you’ve gone back to middle school.

Speaking of college, it won’t exactly turn out like you’re thinking but it will be even better. It’ll just have a rough start. You’ll just have to wait it out because you wouldn’t wish it to go any other way when you look back on it (speaking as your older self).

You’re already feeling the effects of “old age,” or so you think. It’s not normal to ice your knees every night when “all” you’ve done is go to school. I wish I could give you advice on how to change that sooner but I know you won’t listen either way. Luckily for you things turn around and you reap the benefits for years. So really things work out for the best in the end.

Finally, I’ll end with an old people line, “life is short, enjoy the ride.”

*A similar version of this post was written on April 28, 2014

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.