I Can See (It’s Not A Miracle)

I put my goggles on the same way each time, or at least I try to, it’s part habit, part superstition. So, when someone asks me about my goggles, like my coach did in the fall, it sometimes catches me off guard.

“Are those prescription goggles?”

I look down at my rainbow-colored goggles that clearly don’t have prescription lenses.

“You should get some, they’ll change your life.”

I’ve worn glasses since I was in preschool but I’ve always made do in the water; the back line was always wide enough and black enough to see, and after a few laps I can judge my approach pretty well, I know what numbers look like all blurred so I wouldn’t get into the wrong lane, or so I thought.

I looked up prescription goggles online and they aren’t any more expensive than the non-prescription ones, but I still put it off, for some of the seemingly irrational reasons available.

Like, not knowing what my prescription actually was. Honestly, until this process of goggle buying I did not know anything about my glasses. I have a guy who knows and I’m more than cool with that. After I called him and sought his advice I made a reluctant purchase, because they weren’t going to be my ideal goggles.

When they arrived, I looked at them with displeasure; they looked like the goggles most people wear (and now I know why). I spent money on something I didn’t really want and now I was just going to lose them, it was only a matter of time.

I wore them to practice, and I could actually see. I could see the clock, the lane numbers, I could see the walls from further away, and it turns out that black line wasn’t so clear before after all.

(It reminded me of Shelly’s post about her son’s experience with goggles)

I can even see the board after a race, which I always wanted to be able to see, but I really have mixed feelings about it.

But things still weren’t perfect. I still wanted my old goggles for one reason, they’re mirrored.

I’ve worn mirrored goggles since their invention, or close enough. It’s what I like best, and it turns out they do have added functional benefit, like keeping lighting glare out of my eyes. So, I bought another pair of goggles.

They still aren’t what I want but they’ve made things so much clearer for me, literally, so I really shouldn’t complain about it. Truth be told I’d probably still be wearing the same rainbow-colored goggles if my coach hadn’t noticed such a seemingly tiny detail.

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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.  

Don’t Swear

I’ve always been the kind of person who swears a lot of things, “I swear I won’t.” “I swear I didn’t.” “I swear I’ll never.”……

You get the idea.

For as long as I can remember I’ve known people with 2 jobs, even in classmates in school (so if you counted school as a “job” they had 3 jobs). I never understood it. I understood that they needed the money but that’s about it. How can you balance such a life?

I swore I would never work 2 jobs.

Then I became someone who works two jobs.

I just covered it up by calling one a career & the other a job.

And although that’s what it feels like most of the time, they’re both still jobs.

The main reason why I haven’t written in 2 weeks is because I was having trouble balancing my life; between those two jobs.

And there was the 4th of July holiday, or as I call it “the day I watch ‘Independence Day’ and wouldn’t be caught dead outside.”

Oh and after the first week it was kind of fun to take a “blog-cation” and work on my office, which now has an actual desk! (It’s a pocket tray, but still).

In a roundabout way what I’m telling you is, don’t swear. I’m not talking about the 4 letter word swears, because I’d be the biggest hypocrite on planet earth (and quite frankly I enjoy those swears a little too much to give them up).

I’m telling you to steer away from the other type of swearing:

* I could never….
* I would ever…..
* I won’t……
* I’ll never…..
* I didn’t…
* I couldn’t….

I’m giving you this little piece of advice because if you’re anything like me swearing something is basically like daring God (or whatever you believe in) to “allow” it to happen (if you believe that’s possible).

And if you’re anything like me God likes to have a good laugh at my expense, I’d swear to it (almost).

*A similar version of this post was written on July 16, 2013

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.

Grad School: The Endless Spring

This is a hard post to write because the spring semester doesn’t feel over just yet, even though we are well into summer at this point. This was going to be my longest stretch of classes since going back to school. I knew that right off the bat.

That didn’t make it any less overwhelming, in fact it may have made it more overwhelming.

Rather than give you a full rundown or the last 5, yes, I said 5 instead of the typical 4, I’m just going to give you bullet points

-Not taking a 1 credit class between semesters last year ended up being one of the best decisions I’ve made in my post grad career. If I hadn’t I wouldn’t have had a single break in almost 4 years.

-Being Catholic is vastly easier than becoming Catholic.

-The Church is full of technicalities that must be given attention and remembered.

-The Church is full of semantics that don’t make sense but you should still follow them.

-If you can’t find the answer you can find someone who either knows it or can find it.

-Support comes in many forms, sometimes in multiple forms at once.

-Ministry isn’t all peace and smooth roads, learning the more technical side of it is like walking barefoot on broken glass

-No one is right 100% of the time, even professors and/or priests.

-One person’s definition of “simple” is often another’s definition of “impossible.”

-It’s OK to lean on other people.

-Other people will need to lean on you.

-You will be on the verge of a nervous breakdown at any given point, so will someone else, that’s what group emails and texts are for.

-If you send a group email make sure everyone in the “to” field is actually in the class you are referring to, or else you will quite possibly be responsible for someone’s unnecessary nervous breakdown.

-Being on the receiving end of a “no” can be even more freeing than a “yes.”

-There is such a thing as too much communication between people.

-Being available to everyone in your life all of the time is impossible, not to mention impractical, don’t try to achieve it the collateral damage will be permanent.

-Very few people know what it means to really say yes to your vocation.

-Finding humor when and where you can can make your life choices worth it.

“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

“She’s A Really Good Swimmer”

Two cousins gave me my first swim lessons, basically by letting me fend for myself & pulling me up for air occasionally. Summers were spent in the pool so that’s where I wanted to be. It didn’t matter how I got in there. I’ve never been the biggest fan of lifejackets so I learned to swim early and often.

“Did you hear that Michael Phelps has wicked ADHD & the only way he could focus was under water because he couldn’t hear anything.”

Whether that’s true or not for Michael Phelps I can tell you it is true for some. Go jump in a pool, stay fully submerged, and then look around. What can you hear? Not much. Swimming is as simple as it is complicated, swim to the “X” at the other end. It’s pretty close to perfect as far as focal points go, especially if you’re looking for ways to block people out.

I don’t talk about it often but I was bullied in school, most notably grades 5-8. I was the new girl in the world’s smallest class, I’m also different from your average person, and girls can be relentless. I could hear people whispering and I knew it was about me so I did what I always did. I pretended I couldn’t hear them.

”She’s a really good swimmer”

I had met two of my classmates the summer before school started in the pool of the club our parents belonged to. I had hoped we’d become friends once school started, no such luck, but they acknowledged I was good at something.

I was around 11 by the time swim lessons involved swimming full laps. My first lesson was pretty exhausting but by the end of the swimming “term” I was able to keep up with the class. It was breaking through a glass ceiling for me. I was finally able to swim full laps, the catch is, in my mind that meant being “old enough.”

As soon as I could swim full laps I had a friend teach me how to do a flip turn and practiced it endlessly. We’d turn on the flood lights & go swimming at midnight in my aunt’s pool when we couldn’t sleep. I wore one piece racing suits & swim caps. I was ecstatic when my aunt agreed to buy me my 1st pair of mirrored goggles. I was just as heartbroken when I lost them over the winter.

I hated the words “adult swim” because the adults were allowed to swim laps only, and that’s all I wanted it do. I watched the swim team from afar every year wishing I could wear the same blue racing suit.

I read Andi’s love/hate relationship with her daughter being on the swim team.

It stirred up some feeling, mixed ones at that.

One summer I asked my mom to ask “Coach” if I could try out for the swim team (I was too intimidated by him to do it on my own), maybe practice with them a few times if he thought I wasn’t ready. I knew I probably wasn’t as ready as he would’ve liked but I knew he could work with me.

He had said “No.”

He knew he wasn’t going to let me join the team no matter how well the tryout went so he didn’t see the point in my trying.

I was crushed. If he didn’t even want me to try out I guessed I wasn’t a swimmer at all.

“Coach is a jerk. You wouldn’t have had a good time on the swim team anyway.”

It took a wise all-knowing high school aged babysitter to help me get past it, because when you’re in middle school high schoolers know more than your parents. She had also known “Coach” longer than I had and had friends survive life on the swim team. She was also the one who helped me survive the girl-piranhas. Her opinions were more than valued in my house.

I get where Andi’s coming from.

It’s hard to watch someone come in last. I often watch World Championships & even Olympics where someone comes in not just last, but painfully so. I use to wonder why someone would allow such an embarrassment for their country. One day while watching a race it hit me, like a ton of bricks.

This is the biggest stage anyone can compete on, ever. No matter what happens they made it this far. That in itself is an honor & deserves to be respected. Sometimes “just showing up” does make a difference. And just like someone has to come in first someone has to come in last. It’s one of the not so fun aspects of life.

I understand Sarah Kate all too well.

She’s having fun with her friends, and probably making a few new ones. She’s not she-who-has-cerebral-palsy is having fun with her able-bodied friends. She’s having fun with her friends.

That’s enough. In fact, that’s plenty.

Coming from a girl who wasn’t even allowed a tryout

Just knowing Sarah Kate is allowed to compete makes my loss not feel like one any longer, it’s a sign of progress.

Although it would be nice to find that coach after all these years and show him what I’m made of.

*A similar version of this post was written on August 9, 2012