7 Questions: A Few Years Later

A few years ago, in my 20s, I did an interview on another blog. I thought it would be a good idea to update my answers. Plus, I’m running out of topics.

Tell everyone a little bit about yourself.

I’m in my 30s. I have a master’s degree in theology. I work full time as a speaker and writer. I also contribute to medical education and improvement of medical care for people with complex and chronic health conditions. I also have a few part time positions. I live on the East Coast and still prefer to keep things low key. I have fully embraced my introversion and often don’t get out of my PJs to get work done.

Can you share a little bit about your CP, and what kind of therapy was most helpful for you growing up?

I have Spastic Diplegia. I’m a GMFCS level 2 (last time I checked). I had PT at least twice a week from roughly 1-15 years old. I can’t say how helpful was or not because I didn’t have the opportunity to try anything else. These days I swim (on my own and with a coach) and go to the gym (with a trainer) 1-3 times a week, depending on my schedule.

How has having CP affected your life, do you think?

It’s still hard to say how CP affected my life growing up but I do think it affects my life more now than it did even a few years ago. Part of it is by choice, because I make a living by talking about the fact that I have Cerebral Palsy. The other reason is that although CP doesn’t get worse it does make aging more interesting. I have more difficult days with joint pain, spasms, etc than I used to have (I think). I’m doing more to manage my CP than I had been, just to keep myself in the best shape possible.

What’s been your greatest success?

I still think I’m waiting for my biggest success but getting a post grad degree was a big success. Also being able to use my live with CP to improve the lives of others with CP means a lot to me.

And what’s been your biggest challenge?

My biggest challenge depends on the day, if I’m in a lot of pain my biggest challenge can be getting out of bed, other days it’s trying to figure out the best way to get to a speaking engagement, sometimes it’s the metal challenge of getting through a swim practice or workout. Luckily my schedule is flexible enough that I can make adjustments when needed.

What’s your biggest aspiration?

My biggest aspiration is to have a career where I can sustain myself with as little assistance as possible. I really like being involved in medical research and education from a patient prospective, so I’d like to stay involved in that in some aspect. I also may teach at some point in the future, what I’ll teach is still a work in progress, but it’ll happen.

What advice would you have for parents raising kids with CP?

They probably don’t realize they’re disabled as much as you do so treat them like a normal kid as much as possible. Don’t lower your expectations just because they have CP. Don’t take what other people, like doctors, as gospel truth. There’s a lot going on in terms of care and treatment for people with disabilities and chronic medical conditions so what you were told five years ago may not be true five years from now. Seek out multiple opinions and do what’s best for your child don’t be sold on the “in thing” to do.

So, there you go, some of my answers are different, some are mostly the same. I’ve learned a lot more about myself and about Cerebral Palsy in the last few years. Oh, to be in my 20s again, or not, sometimes being young and stupid can double edged sword.

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Difference Is OK

Each case of Cerebral Palsy is different but there always seems to be “fads” that go around, as with anything; whether it be SDR or some other surgical option to Baclofen and Botox.

I’m going to say something that’s not that popular.

What works for one child may not work for your child and that’s OK.

It’s not some kind of medical competition to see who gets the most out of whatever treatment. I know it can feel like it, because it doesn’t stop once your child grows up.

I’ll give you an example, I was late to the party when it came to Botox injections. I didn’t like the idea that I’d have to keep getting them every 6-ish months or so. Everyone tried to talk me into getting them, so much so that my expectations were high, but manageable. Botox doesn’t work for me in the traditional sense, which is both good and bad.

I’m not on any type of regular schedule for Botox injections like most people with Cerebral Palsy who get them, but I get them at least once a year when my muscles get so tight, I don’t have any other options. It’s not the magic bullet that it can be for some people, but it does help me get back to my normal.

Another example is Baclofen, it’s one of the worst medications I’ve ever been on, in my opinion. I did a basic 2-week trial on the lowest dose possible and it ended up being one of the longest periods of my life. Granted it isn’t nearly as bad as some other have had it, but it was an experience I kind of wish I never had. Like the Botox, it didn’t work the way we had hoped.

Now, the one thing that makes my experience with Baclofen different than my experience with Botox is that it was more like a “let’s see what happens” venture. I was warned about the side effects and that it was going to be a process before it would actually work, if it did.

It did work, but too well, so in a sense it didn’t work either. My legs felt more “normal” but the rest of me was one big pile of mush. So that experiment ended quickly but the withdrawal was the worst part. Because yes you can go through withdrawal after just two weeks.

Now that I’ve given you two bad examples, I should give you a good example, trigger point injections work really well for me. Think of it like Botox injections without the Botox. I’m also partial to Myofascial Release. So, I try to get both of those as often as I can, because it’s cheaper than Botox and doesn’t always require insurance.

What am I trying to say with all of this?

Get as much information, both medical and personal about treatment options but manage your expectations. Just because it worked for another child (or adult) that doesn’t mean it will have the same outcome for your child (or you).

Cerebral Palsy is unique to the individual, the treatment(s) should be too.

Sports As Therapy

When I tell people that I’m a swimmer it’s not uncommon for them to think I swim as a form of physical therapy, even when I say that I’m part of a swim team.

While aquatic therapy can be beneficial, and I have taken part in the past that isn’t why I swim.

I swim as an athlete would swim. I show up to practice and swim, basically, the same workout as my able-bodied teammates. While I have gotten stronger, the goal is to make me a better athlete, unlike physical therapy which seeks to treat weaknesses.

I wasn’t involved in sports as a kid, for a few reasons, I wasn’t good in gym class, inclusion in sports wasn’t as popular or accepted as it is not, and I had physical therapy after school.

I don’t blame my parents for not putting me in sports, I wasn’t interested in what was available to me, so I wouldn’t have lasted long anyway. I also wasn’t a kid who could do something every day after school and not loose my mind. I tried it, it didn’t work. Plus, I wasn’t a good student, so I would’ve been kicked off any team based on that, even if I was allowed to be on one.

But times have changed, kids are allowed to at least try being on a team (if they meet the standards) regardless of their abilities/disabilities.

It’s a step, but I see a big drawback.

Parents are using sports as a substitute for physical therapy.

It’s not the case for everyone but that doesn’t mean it probably happens more than it should.

Physical Therapy offers something organized sports doesn’t and vice versa.

One is focused on the individual, increasing function, minimizing deficits, and reaching goals to please bureaucracy.

The other has some similar objectives but it’s more team based while the goals are determined by the individual to measure success.

Both require work, but one is more like a job and the other is more like a social activity (in my opinion).

They are not interchangeable, so they should not be treated as such.

If you treat sports as therapy rather than a fun activity then there’s a chance that a child will see any physical activity as therapy, an unwelcome activity that sets them apart from their peers, they should not be robbed of the opportunity to interact with their peers in a way that only athletics can provide.

Sports should not be seen as another form of therapy, rather they should be seen as what they are activities in which people can find their passions.  

When I Grew Up

I don’t think I can come up with the full list of things I wanted to be when I grew up. So obviously none of the have panned out. However, I’m still waiting to “feel grown up,” never mind actually be grown up, so something could pan out eventually.

There was that time that my high school guidance counselor assumed that I would become a nurse because my mother’s a nurse. My mother then asked the guidance counselor if she had ever even met me before this one meeting, because if she knew anything she knew I would never be a nurse.

Point: Mom

Then there was that one time I was reviewing my health history with a nurse practitioner when he jokingly asked why I never considered become a physical therapist, my answer was “because I wanted to learn something new,” obviously.

I think I’ve had similar goals for why I wanted to be whatever I wanted to be at any given time.

I wanted to make a difference in people’s lives and maybe help them see things a little differently.

It’s hard to say if I’ve achieved this goal but I’m working on it.

I’ve realized I spent a lot of time (probably far too much) trying to be something I’m not. It wasn’t that obvious, it was certainly subtle from my prospective, but with each change I’ve made I feel like I’m getting closer to what I’m supposed to be as grown up.

The funny thing is, if you have a weird sense of humor, I feel like who I’m meant to be as a grownup has been following me around for quite a while just waiting for me to turn around and embrace it.

So, what did I want to be when I grew up?

If you can think of it it’s probably something I thought I wanted to do for at least 5 minutes. None of it has panned out as of yet, somewhat thankfully I admit.

And let’s get real for a minute, I have CP I can’t just have any job I wanted (actually that applies for everyone regardless of ability). So, there were countless things I wanted to be when I grew up that I knew would never happen, so let’s all be thankful I was never interested in Ballet, for example.

I did want to be an Olympian. That was one of the few things I convinced myself I could do, even with CP. I just figured I’d automatically be one of those heartwarming human-interest stories you see between events and commercials.

This was before being rejected from even trying out for the swim team & before I knew there was this thing called the Paralympics for athletes with a variety of disabilities. I don’t want to close the door on my dreams of Olympic glory, but it may be a little late to make a run for Rio (and I’ll probably be too old for Tokyo?)

When it comes down to it I wanted to make an impact on people’s lives. I wanted to make them see things differently or think of something they’ve never thought of before. I never wanted to be someone’s inspiration, but if that happened along the way who am I to disagree.

Now all I have to do is grow up

*A similar version of this post was published on November 21, 2014

Normal Is Nice

Fall means a season of follow ups, and usually a mix of emotions.

The emotions are still there, but I’ll get to that later, or not.

The follow ups are still there, and they will be for the foreseeable future, but they’re different.

I was sitting in an exam room waiting, actually I was staring at the sink, when I thought of a poem.

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Yes, I was waiting a long time. Yes, I do get philosophical the longer I wait.

I remembered waiting to be told I had healed enough that I could stand up, and then feeling pain shoot up my legs as they took on my body weight. It was pain, the very reason why I put myself though all of this, but it was different pain, and I was happy about it.

As the weeks of rehab turned into months my feelings towards standing went from happiness to anger, as happened in every stage of my recovery process.

Every follow up I’d wait, and wish someone would find something that would make me better, a more improved version, faster.

That never happened, at least not yet. And no one ever declared me “recovered,” not officially, that came with some self-acceptance.

I sat in the exam room, again, but with a different expectation.

The expectation of normal.

“Normal is nice,” I kept thinking.

And it was, the follow up went as I expected, and I wasn’t upset or overly happy over it.

It was normal, and it felt nice, to be OK with this (not so) new phase of my life.

Regardless of how you feel about standing, normal is a nice place to be.

Defining normal, that’s the hard part.

A “Fit” ting Realization

I’ve made a few changes in my fitness routine. I won’t go into the details because I don’t know how much of the new will “stick” and how much of the “old” return, or if at all. It’s also more complicated than just feeling the need to change things up; although that was part of it.

In the midst of all of the change and transition I’ve realized something about myself.

I would make the worst workout partner on earth, possibly the universe.

Exhibit A: I’m on an elliptical next to someone else on an elliptical. I’m barely able to keep the machine going under my own power. That someone else inches from me is going close to 100 rpms (or whatever) while texting full conversations and listening to an iPod, like it’s no big deal.

I realize we look like an exercise infomercial, and he has no clue what he’s doing (and how his actions may be effecting the self-image of others.

I resist the urge to push him off the elliptical, mostly due to my personal safety (balance) than any other repercussions.

Exhibit B: I’ve just finished up a few minutes on the recumbent bike. A feat that would have been laughable not that long ago but now I can keep a steady (albeit painfully slow). The seat also has to be “just right,” pretty much the ultimate short people setting but not quite. I hear a lady behind me say she hates the bike (can’t say I blame her) because she’s too short (she’s actually a little taller than me). I think, she’s going to be pretty surprised when she realizes she’s going to have better luck today.

I watch her out of the corner of my eye and she peddles twice (or maybe it was four times) and quits.

I resist the urge to give her a five minute lecture on how it took me years to do what she just did and she gives in, because she probably surrounds herself with people who allow her to throw in the towel far too soon.

Exhibit C: I get to the pool 5 minutes “late” (5 minutes after opening) so all the official lap lanes are taken. I “trudge” down the pool ramp wishing it was deep enough that I could roll my wheelchair to the edge of the pool and “jump” in.

The lady in the lane next to me is doing “the old lady dog paddle.” She shouts to my mother (who has to bring me to the pool because of a lack of automatic door openers) that she forgot to close the door (the door closed by the time she got back to it). She does 2 more laps before getting out of the pool. She uses the ladder (which happens to be in my lane), she almost kicks me in the head in the process.

I stop myself from wanting to shout at her about noticing an opening a barely open door yards away but she can’t manage to keep her heals within striking distance of my eye.

Exhibit D: I’m using the upper-arm bike trying to keep a pace in the 50s rpm range. I realize I’m actually keeping steady in the mid-60s without much difficulty. Someone is using the upper-arm bike next to me.

It doesn’t take me long to realize I’m trying to out due them, without knowing how far they’re going or who they are. But I did get to 70 rpms.

Exhibit E: Lest we forget why I spend the extra money (which I don’t really have), because I’m not the best person to be left to their own devices. For all intents and purposes I need a “babysitter,” because if you tell me to do 3 sets of 10 of anything and walk away I’ll just make it look like I’ve done 3 sets of 10 & then lie to you about it.

But at least I’m honest about my dishonesty, within reason.

Exhibit F: Even when I win (a board game, cards, anything) I don’t consider it a real win unless it’s by a fairly large margin.

My name is Sarah, and I think I have a problem.

*A similar version of this post was written on October 15, 2014

 

Things That Make You Say Ow

A few weeks ago, I woke up & I knew something was wrong. I laid still for a few seconds trying to gather up the courage to admit the truth.

My neck hurt.

I hurt my neck, to put it more accurately.

I could turn it slightly, but not without pain, so much pain I wondered if I’d throw up.

I thought back to the week before: what had I done?

Nothing came to mind.

I was hoping it would go away as quickly as it showed up.

I wasn’t that lucky, when I discovered the potential culprit of my injury I felt downright ridiculous.

I hurt myself by sitting in a chair.

No, I did not fall out of it, just the simple act of sitting in a chair caused this annoyance.

People think that ergonomic chairs are good for everyone, well that’s not exactly true.

Ergonomic chairs, just like normal chairs, are built for normal bodies.

A person who is 4’11” and has CP isn’t normal.

Therefore, my spine turned into a pretzel, more than usual, and my neck took the most punishment.

The first thing that came to mind was, How quick can I get this fixed, I have practice.

(Further proof that I have made the shift to athlete)

I hate missing practice, because even when it’s not fun something about it is fun & I need more opportunities to practice than people who don’t have CP.

Having an injury is also difficult when you have CP.

Because your muscles don’t necessarily have an “off switch” it’s harder to heal, much like getting a cold, the recovery time just takes longer.

And it sucks.

It’s also a delicate balance between giving yourself time to heal but not staying so still that spasticity begins to run amuck, making any injury harder to heal from as well.

It’s an easy cycle to get into but hard to get out of once you’re in it.

One of the most “fun” parts of being an athlete with Cerebral Palsy.

There you go, it’s possible to hurt yourself in any way possible when you have CP.

Then to add insult to injury, pun somewhat intended, it’s harder to recover from it.

Athleticism + CP = ?

Personal note: The timing of this post and the events in my personal life are in the realm of “God laughs at me, all of the time.”

Growing up people always seemed interested in whether or not I had athletic aspirations, conversations which never seemed to go how you would expect. I was always picked last in gym class and never could try out for a team. I was somewhat relieved when I went to a high school that didn’t offer team sports, then my answer could be “my school doesn’t have sports” without further questions. But that didn’t mean that I didn’t have athletic aspirations.

I didn’t think I’d ever become an athlete but now I can’t help but call myself one, if asked. Although I do get more quizzical looks now than I probably would have way back when people would ask about my interest in sports.

People think I swim as part of rehabilitation, that’s how it started but that’s not what it is now. Are their rehabilitative aspects of it, sure, but that’s not the primary goal these days.

I’ve made the mental shift from recreation and rehabilitation to athletic pursuits and then the physical shift followed.

As I spent more time in the pool I realized I needed to spend more time in the gym. The more time I spent at the gym has meant, among other things, that I’ve needed to spend less time picking myself up off the floor after a fall.

The more time I spend at the pool and in the gym the more I ate, and the more attention I paid to what I ate. I can’t just eat whatever I want and expect it to sustain me through a 2 hour swim, just one 25 yard sprint makes that point really fast.

Never mind the fact that people with CP burn calories at a faster rate than able bodied individuals, and that certain foods seem to have adverse effects on muscles prone to spasticity.

If I don’t have the fuel I can’t workout. If I don’t have the right fuel I can’t get the most out of my workouts.

Not everyone can be an athlete, but having a disability doesn’t automatically exclude you from becoming one.

People with CP can be athletes. I know, because I am one.

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.

Quotation Inspiration

Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.
– Saint Francis of Assisi

I noticed this quote in the signature of an email, probably because creative signatures are becoming a rarity.

It made me think of living with CP & working alongside medical professionals for effective care.

Start By Doing What’s Necessary.

My mother “likes”* to tell this story where other moms of kids in my peer group would invite me (and my mother) to their play group. My mother would say that although it would be nice to go to play group but that I had PT at that time (usually). The mother who had invited us to said play group would usually reply, “Can’t you just cancel that?”

My mother’s answer was “No.” Her answer was always “No.”

She’s often said that she didn’t want to sit around and make small talk with moms that didn’t understand why PT was important anyway. She didn’t want to sit around and listen to people brag about their kids either.

I don’t fault my mother for her response. I didn’t even know how frequently she had this conversation with people until a few years ago. If anything I’m glad she kept all of this from me, because I would’ve resented her when she said, “No,” so it all worked out for the best.

Socializing is important, but when you have a disability so is therapy. Therapy allows an individual to learn what they’re typical peers already know. It’s a necessary part of growing up, that is if you want to grow up and be able to keep up with your peers.

There are plenty of other examples that I could’ve used to illustrate the “necessaries” of CP, but PT seemed to be the obvious choice since I had a good story to go with it.

Then Do What’s Possible.

Doing what’s necessary enables you to better do what’s possible, and sometimes enables you to be able to do what’s possible, at all.

You may not be able to do something the same way as your peers but you can do it, and with style!

The cool thing about doing what’s possible is that the more you do the more you can do, even if you weren’t able to do it before.

The best thing about doing what’s possible is…….

Suddenly You Are Doing The Impossible.

This is a dead giveaway given the first 2 points, but I can prove to you that it’s true.

I never took care of myself physically. I did what was necessary, pretty much, but that’s it.

I never took care of myself, until I saw what taking care of myself actually meant.

The only reason I started going to the gym at all was because I had met my post-op PT goals yet I wasn’t able to do much else.  I could dress myself but unable to get clothes to dress myself with. I could get up and down a single stair safely, but only if I had to.

Going to the gym is different than going to PT. It isn’t any easier, but it does change things up a bit. Some goals took longer to achieve than anticipated but I got there. I had every intention of stopping once I was “better” but things didn’t exactly work out that way.

I’ve lost some ground recently BUT in the last few years I was able to do things I’d never been able to do before; I honestly thought some of them were impossible.

So, “Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible.”

*I say “likes” because this is something she doesn’t bring up at every opportunity but it’s one of those stories that I’ve heard enough times that rolling my eyes each time I hear it has become an automatic response.

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