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?

march-25th-is-like-and-share-cerebral-palsy-awareness-day

*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:

keep-calm-its-only-cerebral-palsy

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.

speechlessabc_fanpodcast_v02

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.

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.

Unliked Questions With Disappointing Answers

I don’t like being asked two questions:
”What does having CP mean to you?”
”How does CP effect you?”

I don’t mind being asked them, if that’s how you feel you can best verbalize yourself. It’s just difficult to answer. I, like most people don’t like talking about myself, but blogging works somehow.

The first question sounds like I should be in the middle of the interview portion of a special needs beauty pageant. I really want to respond “world peace,” because doesn’t someone use that answer at least once in pageants?

I don’t subscribe to the school of thought that says, “I may have CP, but CP does not have me.” For a very complicated reason, that I won’t get into now, that kind of response leaves a bad taste in my mouth.

But my actual answer to, “What does having CP mean to you?”
It’s part of who I am. Not who I am.

Now on to,” How does CP effect you?”
This is the most generic question you can ask.
Sounds like the best way to leave the door open for sharing right?

Here’s the problem.
Expectations come with the question.
The “asker” has an agenda, usually looking for commonality.

Parents want to know what older CP people were like at their kid’s age; to see the light at the end of the tunnel now. As much as I can understand the need for it I don’t think there’s much thought behind the motivation for asking. CP is vast and varied, I’m wary of what I tell people, especially at first interaction, because I don’t want my successes (or failures) to dictate another kid’s life, and I try to make the point to keep the door open for many possibilities.

I was born in the 80s. SDR was becoming common. There was PT, OT, ST, and a few other things. There was no Botox, Baclofen pumps, Anat Baniel, Feldenkrais, Conductive Education, ABR and CME, (if there was it certainly wasn’t popular) and that’s just the short list I’m guessing.

I should also take the time to mention that my parents made stuff up as they went along, because there were few or no options. My father made my first set of crutches, toe clips for my tricycle, weighted my push toys so when I used them to stand up they wouldn’t land on me, and made adjustments to my AFOs in the kitchen with a blowtorch.  (In his defense, as much as mine, he’s an engineer). My first “official” crutches were pink, because they only came in pink, blue, and silver.

There are more options now. For that reason alone you can’t really compare my experience to a child today, although there are parallels. We’ve come along way!

When I answer the “effects” question I’m happier when I happen to discover the family first, usually though blogging since I’m a big lurker. I get context that helps me give answers.

I could give a standard rundown of “me” but it would probably be my GMFCS level, surgical history, list of current medications, GPAs though school, SAT scores, extra curriculars, highest level of education, current job, future career goals, and a 5 year plan.

But that doesn’t tell you how CP affects me. More importantly, it’s not me. I’m not facts, figures, and statistics. I’m a person. I want to tell you about me, and who your child, any child, can become. Leave the facts and figures for the medical pros

Parents aren’t the only ones at fault either. Recently I’ve formed a friendship with another girl with CP (I don’t say CPer, another thing that leaves a bad taste) and during our first conversation she asked, “How does CP effect you?” I had to be honest with her, as another person with CP; I never know how to answer the question. She then shared the same sentiment. So as much as the question isn’t preferred we often fall into the same trap.

Make no mistake. I don’t mind answering questions, within reason of course. I know I’m a rarity, particularly when it comes to blogging. If I don’t take on the responsibility, there are very few people that will. Ask what’s really on your mind. I don’t mind, and if I do, I will tell you.

Now that I’ve gotten off my soapbox, are there any questions?

*A similar version of this post was written on December 1, 2011

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.

Why I: Am A Reluctant Advocate

I talk about advocacy a lot but it tends to be a weird experience each time. It’s not that I don’t like talking about it. It’s kind of like talking in the third person when it doesn’t exactly fit the situation.

Why am I an advocate?
-Because there’s a void and someone needed to fill it (or in my case try to fill it).

Do I like being an advocate?
-It depends on the day.

Did I set out to be an advocate?
-No. In fact I’ve done everything in my power to avoid it for years.

But here I am anyway.

Here’s what nobody tells you about advocacy, there are no rules.

Normally I really go for the “only rule is no rules” idea but advocacy one of those extenuating circumstances.

When you put yourself out there as an advocate you open yourself up to a lot. You’re trying to make a difference, and hopefully make the world a better place. However it’s not always a fun and positive experience. There’s always going to be someone(s) out there who wants to tear you down.

The best of intentions can also be dissolved in a heartbeat.

One of the biggest downsides of digital communication is inability to decipher tone. It creates a problem when sarcasm is one of your best traits. Have you ever been told to not use sarcasm in email? The same goes for blogging (or any other online medium) for the most part.
But it’s not the only downside.

It’s hard to put yourself out there as an expert when you feel like anything but. It’s even harder when people see you as an expert. There’s pressure to get it “right.” I don’t want to mislead people.

I’m an advocate, not an expert. Most advocates are in the same boat. But the lines can, and do, get blurred, and that’s really where things get tricky. If things don’t go as you “promised” then there’s backlash. Backlash hurts, and it hurts a lot of people.

There are lots of downsides to advocacy (but there are lots of upsides too).

Will I stop my advocacy pursuits?
-Hell no, but I wouldn’t turn down any supporters.

I never wanted to be an advocate and I don’t want to be even today. But someone needs to stand up (even if it’s sometimes figurative) and say what needs to be said, no matter how reluctant you are.

Are you a reluctant advocate?

*A similar version of this post was written on May 1, 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.