Learning To Repeat

My hand touches the wall for what feels like the 100th time. This time I got it right.

Then I hear a voice behind me, telling me what I’ve done wrong, well more specifically, what I could have done better.

I’m disappointed, but only for a second or two, because this is why I’m here.

Doing something once is easy, repeating it is the hard part, I remind myself. It’s a piece of advice I was given when I was relearning to walk but it applies here too.

To the untrained eye a swim practice looks like chaos, (and/or completely boring) even though everyone is following a line that runs the length of the pool countless times. It’s for this reason that people think swimming, or more specifically swimmers are insane.

“The definition of insanity is doing the same thing over and over and expecting different results.”

Here’s the thing, the majority of that definition doesn’t apply to swimmers, except maybe the insane part, but that’s not an all the time thing.

People think we’re doing the same thing, over and over expecting the same result.

In reality we’re making (probably small, seemingly unnoticeable) changes to achieve different results.

Then we have to repeat the process.

The hardest part, the repeat.

I’ve done this before, but never swimming, at least not in this way.

Is it frustrating? Yes.

Is it what I want to do? No.

I wish I had a brain that could compute things once and have my body follow, but I don’t have that kind of brain. Not only is it not part of my package, it’s not part of anyone’s package. But that’s not much comfort when your lungs are screaming for air, your muscles are burning, and you still managed to come up short in some way.

I’ve been here before. These feelings are not new. Oddly enough there is some comfort in this, as weird as it seems.

I’m not learning how to deal with new feelings in new situations. That’s a big plus, that my mental energy is pulled in one less direction.

It wasn’t that long ago that I was wondering if I’d ever feel “normal” like I was truly part of a group of people. So, in a way I’m happy to be frustrated because someone noticed that I could be better and wanted to help.

Learning to repeat isn’t easy and it’s not always fun, but when you finally achieve it it’s almost always worth it.

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World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

Review Session

I’ve been riffling through my past writings, for various reasons. I can’t say it’s been all fun rereading everything but it has been interesting.

——————————-

Two years ago I was pre-surgery*

One year ago I was post 1 round of Botox*

*I did indeed have to search the archives to remember this

This year the MDs & Ph.D.s are pretty much hands off.

Progress indeed.

Things aren’t prefect.

But a CP body isn’t your typical definition of perfect.

“It doesn’t get easier or harder. It just gets different.”

The idealistic picture I had in my mind two years ago is a distant memory. As in so distant I barely remember the picture, other than I had one.

The real picture is coming into focus.

I’m sure there are things that could use fixing. In fact I know there are. They’ve just been put in the “wait and see” category, and it looks like they’ll be staying there.

Do I want them fixed?
Of course.
But I don’t know how much difference it’ll make overall.

Plus I’m in pretty awesome physical shape.
Going in for more work would mean “tearing down” my hard work.

That’s the biggest negative for me.
Further improvement would come at a cost.

I’m not 100% with how things are.
I’ve made that pretty clear to a lot of people.

But who is really, truly, honestly happy with themselves 100%?

Even if I can still see room for improvement that doesn’t mean I have to bow to the surgical gods for it.

A big revelation for me I admit.

I can manage my own trajectory.
Modern medicine will always be there.

*A similar version of this post was written on September 2, 2011

On 2 Years

8 years ago my life was at a turning point in my life. I had been in pain for so long and I couldn’t take it anymore. I had to do something about it. 2 years out I wrote about the progress after the turn. I thought I would see my life more differently 8 years after than I would 2 years later, although there are a few things that are different now the general sentiment is pretty much the same.

——————————-

A lot of people see scars as defects, at least detection of defects.
I look down at my scars and see differently.

Improvement.
Teamwork.
Hard work.
Skill.
Courage.
Faith
Obedience.
Accomplishment.
Risk
Hope

Just to name a few.

It took a long time to even get to that point 2 years ago.
Lucky for me there are times I’m like a dog with a bone.
Although I did feel like quitting plenty of times.

All I wanted to do was be who I was.
Rewind the clock.
Not be in constant pain.

It didn’t even occur to me that a fixed body would mean possibility & ability to actually become better. Even when the idea was presented to me I had my doubts, actually I didn’t think it was possible, just someone being hopelessly optimistic.

To borrow a line from Soul Surfer, “I don’t want easy, just possible.”
Well someone did, it just wasn’t me.
I was just waiting until I felt back to normal.

But when I wasn’t paying attention I was getting better.

Climbing up stairs without pulling myself up or using a handrail
Stepping off a curb
Being able to dress myself without falling over
Jumping
Walking backwards & sideways
Stopping at a street corner before crossing
Finally learning to walk with my heals with some consistency

All things most people without much thought at all.

It took a lot to get this far:

1 failed Baclofen trial
10 hours of surgery
Months of PT
Months of Pilates
Self-motivated pool sessions
Weekly one on one gym sessions
2 rounds of Botox

But I did it.

Everyone kept telling me the hard part was going to come after. I have to say they were right, as I’ve said; two years ago, the hardest thing I had to do was take a 10 nap while everyone else either worked or waited on me.

“We’re done,” meant “Your turn kid.”

But like the getting better part, the hard part happened when I wasn’t looking.

As Hemmingway wrote in, The Sun Also Rises, “Gradually, then suddenly.”

If I did this, what else can I do?

*A similar version of this post was written on September 13, 2011

Free The Feet (part II)

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

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

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

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

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

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

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

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

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

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

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

Can they last me more than 5 minutes?

Can I walk in them comfortably?

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

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

Do they have any potential for creating pressure wounds?

And on and on, and on……

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

On The ADA Anniversary

I’ve often wondered if the ADA creates more problems than it solves for some, if not all, people with disabilities. It helps A LOT, but it also causes a lot of headaches.

I’ve come to realize however, that the ADA isn’t really for people with disabilities. It’s for the people who can’t even imagine what life is like to live with a disability.

Kind of like how birthday parties really aren’t for the people they’re thrown for but for the people that go to them.

Kinda.

Without knowing it I managed to grow up just as the ADA was finding its “sea legs,” which probably explains why so many aspects of my life have become, in a sense, easier even though my mobility had had an endless ebb and flow.

I once heard it said that, “those who don’t need the law are truly freed from the law,” or at least that’s the best my brain remembers it as.

The idea being (I think) that we wouldn’t need as many laws (or any) if everyone operated with the same level of moral decency.

As great of an idea as this is I doubt it will ever happen, ever. Sorry all of you who dream of world peace.

It would be nearly impossible for someone to be able to imagine what it’s like to live with a disability, unless they do in fact live with a disability themselves; besides the fact that imagining it and living it are two different things.

That’s why the ADA is so important.

It gives people a clue into what’s needed in order for people with disabilities. Although it should be pointed out that what’s deemed ADA compliant doesn’t mean it’s accessible for those who need it to be, but it’s better than nothing.

(So if you don’t know anything about the ADA feel free to read up)

As much as I (and countless others) benefit from the ADA there always seems to be something new to learn.

Such as how many loopholes there are.

Like the loopholes for already existing buildings and/or religious institutions.

As a Catholic who works in a building that’s been “grandfathered in” (multiple flights of stairs and no elevator) I curse such loopholes often.

It would be nice if there were less (or no) loopholes in the ADA but that’s only a short term dream. Someday I’d like it if the ADA was an afterthought, making it in a sense unnecessary because access for all is a natural thing.

It seems so wildly unrealistic, but I can hope right?

*A similar version of this post was written on July 22, 2014

Free The Feet

One of the interesting things about rebranding a blog is that you have something of a stockpile of posts to pull from, whether it be for memories, new ideas, or even reposting. I wrote the following 7 years ago, almost to the day:

-I don’t like shoes.

-I don’t like feet more than I don’t like shoes.

-My dislike for feet has nothing to do with how unattractive my feet actually are.

-My college campus was the land of flip flops, even more than most schools.

-I have a friend who promises his children won’t wear shoes until they’re at least 5, and even then not in the home.

-More than one of my friends gave up wearing shoes for Lent, and no one was fazed by it.

-I use to know someone who never wore shoes, even in the dead of winter.

-I can only wear sneakers.

-Only on rare occasions can I wear shoes that are not sneakers.

-I use to require getting a new pair of sneakers each month.

-My current shoes have lasted over 6 months surprising my exercise physiologist and new physiatrist, but for different reasons.

-My friends use to declare “free the feet” days during college.

During my last post-op visit I had several things on my mind. I’ll spare you the nitty gritty but having met with my physiatrist the day before & having opinions from the exercise physiologist weighed heavily on my mind. One of the biggest reasons I moved my Orthopedic care to Boston was that things are more comprehensive and having to coordinate my own care for the last few years had become exhausting and seemingly unnecessary. But I still have trouble letting go and not hand delivering mounds of paperwork to each doctor and/or specialist during each visit (I have printable files I regularly update as well as the “official” stuff) or putting my two cents in here and there in the form of, “Well ___________ said that_________________________ and it makes sense to me so……….”

I’m a rare crossbreed of nosy, self-controlling, snitch-of-a-sponge. But 9 times out of 10 I will deny this fact.

At my first post-op appointment, I was given a prescription for a new AFO, a “downgrade” for the one I had been wearing for the last few years. I wasn’t happy about it because (1) I actually liked the AFO I had and felt it only needed an adjustment or two (because I’m a professional after all) to be able to carry on, (2) I REALLY didn’t want a new AFO after all the work I had done. But I relented with the understanding that within a year I’d hopefully be able to rid myself of AFO(s) altogether.

“Can I stop wearing the AFO at least sometimes because….(I’ll spare you the pleading)”

“Well let’s see.” (I hop off the table take barely 2 steps) “Yeah, you’re fine. But after the Botox you’ll want to put it back on…… (tra la la)”

So I went out and bought new shoes, because an AFO can stretch out a shoe like nobody’s business. They aren’t my favorite looking but the fact that I’m wearing them AFO-less puts them at the top of the list by default.

Not really remembering that I’ve worn an AFO for years meant I was grossly under prepared in the sock department. I think I have 3 pairs that don’t come up to my knees. No matter how many I actually have it’s not nearly enough. Lucky for me my mother has an abundance of socks. Well not really, but she has a good number she doesn’t wear so I’ve become the proud owner of them, again by default.

I’ve adjusted to life without an AFO pretty easily & rather well I might add, but that all ends on Monday when I get injected with Botox.
I’m hoping going back to the AFO is only a short term deal, or else these last few weeks have been a major tease.

At least I’m not going back to lock-up. That was an experiment that I will never repeat for as long as I live, and neither will my orthotists.
For now I’ll be eagerly anticipating my next “Free The Feet” day.

*A similar version of this post was written on July 16, 2010

I Pulled My Armpit?

I’ve been having issues with my right arm for months. I figured it was just lingering from my unfortunate encounter with a chair a few months ago. It would get better for a while and then not, and then get better and then not, and you get the idea.

I’m sure it’s not that big of a deal for most people but when your legs aren’t normal on a good day and your arm is sub-par you’re basically down to one fully functional limb on any given day.

I’m normally sore for a while after a trip too.

So, I just waited it out.

Until I thought maybe I should stop waiting.

I mentioned it to my trainer and he found a fairly large trigger point in the region of my scapula.

I texted a friend with a rehab background after my session to find out what she knew about it.

“Um, serratus anterior?……Basically the muscle on your side below your armpit.”

Awesome.

Wanting to know more about what I’ve gotten myself into I came home and looked it up for myself.

serratus-anterior

How someone can find an injury within this mess without the aid of additional studies is beyond me but I’m glad it’s possible, especially so early in the “Medical New Year” when I avoid any doctor related anything like the plague.

Being a swimmer with CP I’m realizing I have to be a different kind of careful when it comes to my upper body.  

Being A Human Pincushion (part II)

 Once upon a time I said I probably wouldn’t mind being a human pincushion for a day, for a second time, if all the right ducks were in the right row. That almost happened this year, almost, when my PM&R’s office called needing to reschedule my appointment.

But with the sports medicine specialist away for most of the month (it’s conference season after all) it just wasn’t going to happen.

Instead I ended up going to Boston twice in a small window of time, without much time to spare, naturally.

On the plus side both appointments were resident free so that was pretty great, considering.

Although the appointments were over a week apart I still felt like a human pincushion, and not in a practical way that benefits me in the best way possible.

But it’s done, I’m hoping to get at least 6 months out of this round, although a year would be more ideal.

Never again would be magical. However, I know not to do that to myself.

So, I’ve set my sights on the 6-month mark.

The bruising and soreness has disappeared and I’ve returned to my regular activities, and then some.

I’ve made the appointments, just in case, but hope to be able to reschedule them for a later date.

Being a human pincushion isn’t an ideal situation but I think I’m beginning to come to terms with it and all that it entails, like scheduling appointments in a timely manner, rather than waiting until I’m “past due” and begging to be put on the schedule.

Although I’ve been a “professional patient” for decades I’m still learning the tricks of the trade.

“She’s A Really Good Swimmer” Redemption

When I first told you about my time on the swim team, or rather clear lack thereof, I felt like something was missing. Although I made my point, or at least I believe I did, I was left with negative feelings.

I need to make something clear to you.

I know I’m a good swimmer. I haven’t hit the pool in some time & I probably won’t ever be able to call myself an Olympian (or Paralympian). Regardless, I’m a swimmer.

My father is an Eagle Scout & being his only child scouting was a nonnegotiable. A good portion of your camp day involves water safety also known as swim lessons (grouped with the help of the Red Cr0ss). My 2nd year of camp I was in the “swimmers” unit. The unit that got more pool time in order to put on a water show at the end of the session. It was pretty awesome being able to have such likeminded friends. Plus I really progressed as a swimmer

My next year at camp I chose a different unit & was actually pretty excited about it, until the first day of camp came around & all of my friends from my old unit were in another unit, together. I figured I’d get use to it & see them quite frequently, until I found out where our units were located.

The next day I asked to switch units. It was pretty obvious that I wanted to be with my friends. Everyone in the office knew it, including the camp nurse (a friend’s mom) who probably told everyone before I arrived with my request. However, “I want to be with ALL of my friends” does not count as a legitimate reason. So, I came up with another reason.

“The unit I’m in is so far from the flagpole”
(Which is considered the center of camp)

It wasn’t the most far-fetched reason. My unit was in the furthest possible location, from everything. A portion of camp is located on a mountain, which is where my unit was. It wasn’t that bad really. I had been to that unit location before, years before when I was younger than & not as able as I was making my case. But no one who could O.K. my unit switch knew that.

I used my disability to my advantage. I admit it. But it was one of those times when a girl just needs to pull out the heavy artillery.

I moved to my “new” unit the next day.

We weren’t “the swimmers” unit our second year together but we were very much the same unit, except that our assistant leader was now our leader, and we now had an overlook to our old unit location, and there were maybe 3 new girls.

Typically, each year someone attends camp they have the opportunity to take the swim test to move up to the next level. I was “still” at level 3 at the beginning of my third year (I had started at 2, like most). No one had approached me to test at the end of the previous year so I took matters into my own hands & asked to take the level 4 test.

I had even asked my friend, whose mom was the nurse, if she thought I could pass the test, since she was the best swimmer in camp (councilors, lifeguards & her own mother included). I knew I could pass the test, but assurance is always nice. I was so sure I would pass I threw my swim cap into the trash. I was getting that yellow cap.

The next day I jumped in the pool with the level 4 group. Something just didn’t feel right to me, but I gave it my all hoping what I was feeling didn’t show.

It turned out the night before they changed the chemicals they used to treat the pool and I had a small leak in my goggles, which didn’t help matters.

I was handed a new white cap and told to go back to the level 3 group the next day; on top of an eye infection that developed the next day from the change in chlorine.

It felt like the first day of camp all over again, the day everyone gets checked for lice.

I didn’t understand it. I was ready. I was willing to work hard. Most importantly, I was able.

The only comfort I had in this situation, if you can call it that, was that my friends felt the same way. They knew I didn’t belong where I was. In fact they encouraged me to ask to take the test again at the end of camp, if I wasn’t offered the opportunity.

During the last days of camp, it was announced that there would be camp Olympics (since it was an Olympic year) and many events were to take place at the pool. The former “swimmers” unit was ready for it all.

Someone suggested I be on the relay team.

Me? The girl who less than 2 weeks before failed her swim test. Swim the relay?

I (unknowingly) achieved the dream for every special needs/disability parent out there.

”Her first year of swim team, I think she was an inspiration to her teammates. The past two years, though – and especially this year – I think she’s just another kid to most of them”

I agreed, and swam the first leg. I didn’t want to be the reason for our unit to lose. I’m also no idiot. Everyone knows swimming the anchor leg is an honor, one reserved for your best swimmer.

We weren’t the runaway winners at the “swimlympics” that year, but we put on a good fight when we needed to. I don’t even remember how we placed. What I do remember was that we had the best show of unit pride and teamwork at the pool.

I never officially “made” the swim team (or officially got that yellow cap) but the Pips girls were my team when I needed one.

(I still wish I could make that coach eat his words though)

*A similar version of this post was written on August 28, 2012