Confessions From A CP Adult

I’ve started this post about half a dozen times. It doesn’t happen to me a lot, at best I reorganize but this is one of the few blank slates. Most of my CP related posts I don’t come up with on my own. They usually start with a tweet, a post, an email by someone else, or a conversation with someone.

Rather than do a full on post explaining every detail I can think of about one CP related topic I wanted to get real, as in the real me living with CP. This may hurt a little, just so you know.

* I use my wheelchair more often than I probably should. Sometimes I just find it to be more socially acceptable. I also like being able to board planes first & having active duty service members follow me, especially Marines (although I dislike when they call me ma’am).

* It’s easier to explain why you use a wheelchair than explain why you walk funny.

* I have CP. I don’t suffer from it. The only thing I suffer from is misunderstanding, misjudgment, and plain old idiocy……..of other people.

* Not everything a person with CP does should be labeled inspirational. “Milestones” like getting your license or graduating from high school (and at this point even college), getting a job should be considered expectations.

* We are no one’s hero just for being average. Average is the goal. Leave it at that.

* “The R word” doesn’t bother everyone (like myself). However it does bother a whole lot of other people so just take it off the table, along with every other word that makes people with disabilities look bad.

* Just because someone has a disability doesn’t mean they don’t have loads of abilities in which you lack. Think about that.

* It is in fact possible to take advantage of having a disability (see my first point). I don’t do it often. I feel its “bad for business,” so to speak, to do so, but that doesn’t stop me. Every membership must have some benefits after all.

* It’s typical to be asked questions (and/or stared at), even a few that are completely asinine, but it can get annoying. Most people don’t mind answering them, please be thoughtful, and don’t get mad if someone doesn’t want to answer your question(s). The internet is great for finding answers, if you haven’t heard about it.

* People with CP are individuals first, just like the “average” person. Therefore we do not all have the same job, living situation, or social circles. Suggesting a desk job for someone simply based on your perception of their limitations is like giving someone a life sentence for a lesser crime (bad analogy, I know, go with it).

* CP is one of the most common childhood disabilities; therefore it’s pretty common for adults too. A small group of people know this; it can feel like a smaller group of people actually care.

* It’s amazing how common CP is, yet how little people actually know about it.

* The last thing someone with CP wants to do when suffering with a non CP related health crisis is explain to everyone what CP is. Treat the crisis then have an educational moment.

* Sometimes I avoid situations because of the social pressure to be a role model when I just want to be myself.

* I’m a person first, please treat me like one.

* It’s possible to forget you have CP with nothing to compare it to you’re constantly living in a normal all your own. Sometimes it takes passing a mirror for my brain to actually get it so for low maintenance girls (like myself) I can go days without really seeing myself in a physical sense.

* Not everyone is into adaptive sports (or other activities). That’s O.K.

* Few people with CP have friends with CP. I have friends with other disabilities/medical conditions but they were not sought out. They came into my life. Some became fantastic friends, others I’ve wished well and gone on my way.

*A similar version of this post was written on October 2, 2012

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.

CP See, CP Do

“Breaststroke, drill, 6 count glide.”

My coach says at some point during practice, somewhere between warm up and the time when I wish I was in bed sleeping.

I love breaststroke, even though my stroke is 100% pull and 0% kick, so just hearing the word “Breaststroke” makes me happy (or slightly less unhappy depending on the previous set).

But hearing the words, “Breaststroke, drill, 6 count glide,” at this point makes me roll my eyes (thank goodness for darkened goggle lenses).

Although it’s my favorite stroke the drills are killer.

Why?

I have no back end to speak of, literally I’m working with half of what everyone else has at their disposal, especially in Breaststroke. I’m well aware of this, at this point almost everyone else is too, but that doesn’t get me out of doing drill work, and on the rare occasion it does I’ve at least tried the drill.

But this time is different. I know I’ve done this drill, my brain just can’t pull it up. So, I turn to my teammate, “It’s pull, 1-2-3-4-5-6, pull, 1-2-3-4-5-6, pull. Right?”

She puts her arms in front of her and does the drill using every verbal cue to match the visual cues. My teammates (and coach) also know I do better with visual cues and having verbal cues doesn’t hurt.

I stay behind as everyone else heads to the other side of the pool. I’m sure I know what I’m doing but I want to be really sure. I scan across the lanes and pick someone to watch.

“The goal isn’t to go fast. Make it clean,” my coach says standing behind me. This isn’t new either. Although I took up swimming a few years ago, drills are still new. My brain is used to stop or go, not maximize what you have to use less energy. She’s now used to giving me a single focus, spelling it out before I completely tire myself out trying to do what I think I’m supposed to be doing.

“Don’t go fast. Make it clean,” I say outload and scan across the lanes one more time before I push off.

Pull.

1-2-3-4-5-6.

Pull.

1-2-3-4-5-6.

Pull.

I’m saying everything in my head while I’m doing it. Keeping my neck long and straight with my head down all while my arms wobble erratically in an effort to keep my body balanced. My chest is starting to burn and I can feel my heart beating lightly in my ears. This doesn’t feel like what I see anyone else doing.

I forgot to breathe. When am I supposed to breathe? Oh, yeah. 5-6.

Pull, breathe.

1-2-3-4-5-6.

Pull, breathe.

It’s better but still awkward. Eventually, pretty much an eternity, later, I touch the wall.

“That was a really nice Butterfly pull at the beginning of that last one,” my teammate says with a smile on her face. She knows I messed up & I didn’t realize it. I didn’t do a Breaststroke pull until my 2nd pull.

I’m mad, but at myself. I can’t even do things I like right, never mind well.

I remind myself why I’m here & why I’ve stayed with this group. A few months ago, I would’ve finished out practice and kicked myself until the next day, at least, over it. Now I know no one really cares how I do the fact that I try to do it is enough.

I’m lucky that I’m with a group of people who care about how I do but help me keep my personal expectations in check. I want to do things perfectly the 1st time every time. No one can do that. When someone laughs, they aren’t always laughing at me, they’re trying to get me to laugh at myself, because they’ve been where I am.

I’ve even luckier that I have a group of people I can watch. I can see it before I do it rather than just thinking I know what I’m supposed to do. I have a good idea of who to watch depending on the stroke, distance, and/or drill, and it really does help.

I sometimes joke that my team is a motor planning think-tank because sometimes it’s how I can get the most out of practice.

  • See it.
  • Plan it.
  • Do it.
  • Make needed changes.

It’s Not Easy Being Green

When you think of March what color do you think of?

I’m guessing green since St. Patrick’s Day is in March & St. Patrick’s Day is all about green (at least the “rated G” version is).

Guess what color Cerebral Palsy awareness is?

Green.

I believe I have figured out one of the barriers of raising awareness for Cerebral Palsy.

Allow me to take you through my thought process.

October is breast cancer awareness month.

The color for breast cancer awareness is pink.

A color most associated with October is orange, due in large part to Halloween.

Would breast cancer awareness be as big as it is if February were its month?

Something tells me the answer is yes, but it’s still something worth considering (especially for the sake of this argument).

There are too many similarities in the basics of St. Patrick’s Day & CP awareness. There’s not enough curiosity of “check it out” factor to make awareness easier (but that’s just my opinion).

There’s also been talk of why green is the color for CP. Green happens to be one of my favorite colors so I have no problem with it, but I know not everyone is a fan.

I’m curious as to why March ended up being CP awareness month. Let us also remember that the r-word day and Down syndrome day are also in March.  It just seems kind of odd that a lot of disability related awareness is in one month. If this was on purpose then why isn’t March “Disability Awareness Month”, which is actually in October (or has that now been deemed “Disability Employment Month”).

Is the confusion part sinking in yet?

I’m not suggesting that we change CP awareness’ color or its month. It’s too “late” in the game for that. Changing any of those details now would just add to the confusion and just continue to feed into the attitude of “un-awareness”.

So what’s a community to do?

The answer is easy.

It’s the execution that’s more difficult.

The good thing about the CP community is that all its members are used to difficult. It’s practically in our DNA.

The solution?

Be the loudest group.

However, it’s not a “he who yells loudest wins” situation (although that would make things slightly easier).

The CP community needs to be the loudest but it also needs to be the smartest (as well as the stubbornest).

The odds are stacked against the CP community. They always have been, and for way too long.

I think Kermit the Frog said it best, “It’s not easy being green.”

*A similar version of this post was written on March 26, 2014, March 17, 2015, March 17, 2016

Gifts Of CP

People think that having CP I must be “less than” the average person; or more common, and even more inaccurate, that I feel as though I’m “less than.” So to prove the average person wrong here are some of the gifts of CP, and some reasons.

Life Outside The Box- Let’s just let the cat out of the bag here, a person with CP does not function like the average person. It’s impossible. You have to live life outside of the typical box your peers find themselves in. I know a lot of people get down about not being typical but I find a certain level of freedom in it.

Rebellion- People are always telling you what to do, or what they think you should do, or via versa. But a healthy sense of rebellion helps shut out the naysayers.

Faith- This may seem like a given, given my background but I’m not talking about faith in a god, just faith in something, especially yourself.

Creativity- Life outside the box certainly takes some creativity. Everyday tasks can sometimes be interesting, like navigating stairs or reaching into cabinets. Whatever works for you just go with it.

Ignorance- This is one of those qualities that rarely has a good application, but if you don’t know you can’t (or shouldn’t) do something why not go for it? Sometimes ignorance leads to bliss.

A Fresh Start- CP doesn’t get better or worse but how it effects a person changes throughout their lifetime. I’ve often told people I’m never sure which body I’ll wake up with from day to day. People usually take this to be a bad thing but what few think about is the opportunity to start over every day.

Humor- I feel like this one is pretty obvious, but I’ll try to explain it anyway. You find yourself in some pretty unbelievable circumstances & if you can’t find some humorous aspect of it you’re sure to go nuts.

Authenticity- I’ve often heard people complain that those with disabilities don’t seem to have as many friends as those who don’t have a disability. That isn’t always true but when it is the authenticity of friendships makes up for the lower number. Not to mention the fakers don’t typically stay around long, sometimes it’s their choice, sometimes not.

Self Reliance- Life ends up being what you make of it. You can’t rely on others to make you happy, even if you tried who would you look too? Not only do we have family & friends but often a team or doctors & other specialists too. You can ask for opinions but when it comes down to it you have to decide for yourself.

Determination- A lot of typical “growing up stuff” like riding a bike or learning to drive doesn’t come easily to those of us with balance and/or depth perception problems. But with enough time & sheer will power it happens.

Acceptance- This is one of those overused terms, but accepting you have CP is one of the best things a person can do for themselves. Although it is something that has to come with time that can’t be forced. Life gets easier once you’ve accepted that you have CP, but it doesn’t define who you are.

The Element Of Surprise- People often have misconceptions about what a person with CP looks like. A good thing about being classified under an umbrella condition is that the element of surprise is on your side.

Teamwork- Going along the lines of “it takes a village to raise a child” sometimes it takes a lot of people to help someone with CP. As with any group of people it takes a certain level of teamwork for things to go smoothly, or as close as you can get to it.

*A similar version of this post was written on March 15, 2012

Of Ice & Pies

I admire what the Ice Bucket Challenge has done to bring awareness to ALS. However, I was completely over seeing videos take over my feeds within a matter of minutes.

I’d don’t have objections to “fundraising stunts,” I really don’t. Anyone who has ever been involved in soliciting donations knows anything that can get money (and attention) is good, almost.

I know funds from ALS research are at an all-time high, even after the hype of the Ice Bucket Challenge has long died down. I’m not going to try and tell you that I have a problem with that, because I don’t (you’d have to be a certifiable loon to have a problem with raising money for underfunded research).

However, the whole thing seems so backwards to me.

The object is to NOT want to pour ice water over your head. Therefore, you donate money.

Your F@cebook feed SHOULDN’T have filled up with videos of people dumping ice all over themselves.

Right?

Well apparently not.

There’s also the issue of ALS awareness, as in, what ALS actually is.

It, like CP, is greatly misunderstood.

(What is it about neuro –muscular conditions? It feels like “misunderstanding” is part of the conditions themselves.)

While I’m not the biggest fan of disability simulations on the whole I think any fundraising “stunt” should bring awareness to the actual condition. ALS does not make you cold as ice/ice water. It does however rob a person of any and all muscle usage.

I should also tell you that the (F)JV that’s still alive and well inside me has a real problem with wasting water, especially when areas of the country are experiencing severe drought. It’s probably not as drastic as one of those “cutting off the nose to spite the face” deals, but I think you get where I’m going with this, if not just think about it for a while.

I have watched (and posted) few ice bucket challenge videos (or relevant posts) so I’m not entirely blame free here. So watch Father Kyle Sanders’ video & read Maria Johnson’s post if you want to know what I consider “cream of the crop” of all this mess.

I’ve heard rumblings of wanting to do “ice bucket challenges” for other illnesses/conditions, even now. While it’s tempting to “strike while the iron is hot” there’s also the danger of “fundraising fatigue,” not to mention lacking originality and creativity.

Speaking of striking while the iron is hot, there was another “fundraising stunt” going around the interwebs not long after the ice bucket challenge. I’m not that familiar with it so you’re going to have to cut me some slack if I get some of the details wrong.

It involves CP funding & pie.

As I understand it you’re “tagged” and you have to donate $10 to CP research and hit yourself in the face with a pie within 24 hours, if you don’t you donate $100.

It gets points for originality, thereby partially, avoiding “funding fatigue,” but I can’t say I’m all “gung ho” for this either.

(F)JV me isn’t too happy about the waiting of food thing. People in the world are starving, and you’re throwing food in your face? Not too cool.

I also come from a family who holds pie in the highest regard. My grandmother made apple pie that’s the stuff of legends, literally. She died when I was a toddler so I never got a chance to taste it for myself, or if I did I don’t remember it. I’m sure Grandma wouldn’t be too crazy about her favorite grandchild participating in any event that involves pie, unless you’re going to eat it.

Although I have to confess, I wouldn’t mind if my social media feeds had a few “pie in the face videos,” if for no other reason than to be proven wrong.

As much as I hate seeing pie be wasted, I would love to see people trying to bring awareness and funds to CP; because as much as I don’t want to cure CP I can’t deny that treatments and assistance for those who need it just isn’t there (speaking from experience).

I  saw less than 5 pie videos appear on my feeds (I saw more than that, but indirectly, not through original posts or shares). I won’t lie; I wish CP would become the “next big thing” to support, even if it’s just for the day, because sometimes life gets lonely when people aren’t giving you the time of day (especially if you’re an adult).

Throwing a pie in your face doesn’t tell you anything about what it’s like to live with CP either. If you want to know what it’s like to have CP ask someone who has CP, while every case of CP is unique to the individual, you’ll get an idea.

So what’s the point of all of this seemingly senseless rambling?

Save your pie for dessert & your ice water and buckets for summertime fun, putting out actual fires, or gardening.

Get out the checkbook (or debit card) and give your money, or better yet your companionship

*A similar version of this post was written on September 19 & 24, 2014

Is This Thing On?

My of my biggest worries as a blogger is that I repeat myself. I’ve been at this for long enough now that I know it’s more likely to become a reality, therefore I have tried to be better about organizing my posts.

However, I almost wrote a post today that was going to be almost identical to a post I wrote last year, almost to the day.

Are you creeped out? Because I was, kinda.

I feel like I’ve blogged myself in a complete circle.

I may be on the verge of an existential bogging crisis.

I don’t want to keep reposting previous posts, although sometimes they do have their place, but what else do I have to say?

How much more can I write about Cerebral Palsy & what it’s like to live with it?

My brain can only crank out so much information before I’m just shouting into a void, regardless of what anyone else thinks.

The last time I felt this way I was told it was OK if I repeated myself because people needed to hear it again, but even that can only last so long before I sound like a raving looney tune.

Social networks have been great to me in this year’s undertaking. See a tweet. Have an idea. Write a post. Include tweet in post. Add post to retweeted tweet.

But I don’t feel like that can carry me though the rest of the month, or even through the next week.

I could get ideas from my podcasts but here’s the thing with that: as soon as we stop recording I forget everything I’ve said, which makes doing the show notes interesting (because I have no interest in listening to myself).

I know people are reading, sharing, and commenting.

Is there anything you’d like me to say, or try to say, that I haven’t already said?

I’m hesitant to promise an “ask me anything” type post but I’d be willing to give it a shot if people are open to hearing what I have to say (or not hearing anything if I deem something off limits, but I’ll disclose that).

CP Is A Fingerprint

There’s a nice thing that comes with having a blog, you can pretty much put your thoughts out there and let it go. But there are times when people want to engage with you, and it’s great, but also a challenge.

Having a blog about CP is no exception, especially when resources are limited and CP is such a broad diagnosis.

Even if two people with CP have the exact same diagnosis on paper it doesn’t mean that they’re effected the same way, in fact I can almost guarantee that they won’t be effected the same way.

So, when I get asked questions or get presented with other people’s opinion on my care, or the case of others, I ask everyone to take it with a grain of salt.

I don’t have all the answers, but no one else does either, but it’s hard to remember that when you so desperately want answers (or want to give advice).

It’s natural to want to be surrounded in a community of people you have something in common with but when it’s something like Cerebral Palsy it can be hard to find the common ground you’re looking for because at first someone may seem “like you” but when differences start to appear it can be hard to not compare & contrast (and then potentially get bitter).

We are a community, but it can be easy to forget that we’re individuals first.

Hide & Seek

Despite having Cerebral Palsy for 30+ years I’m still learning about it, it’s effects on me, and how it affects others.

 

I could go in-depth as to why I think that’s the case but that’s probably a topic for another day (before I put my foot in my mouth) but the short version is that there’s little research on people with CP over the age of 18.

Cerebral Palsy effects how the brain communicates with muscles so there’s a misconception that it’s a muscular disorder.

It’s easy to do when the majority of Cerebral Palsy related surgeries deal with bones and muscles.

But a lot of the largely unknown aspects of living with CP have to do with the nervous system.

There’s a startle reflex.

Chronic Pain.

Temporary, yet extreme pain, like a kidney stone.

Side effects from medications.

Trying to do two things at once that requires different areas of your brain, like getting dressed and holding a conversation.

If it has the potential to cause any neurological issues for a person with a normal nervous system there’s a pretty good chance that it’s going to cause issues for someone with CP.

 

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.