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

Speechless For Now, Or For Good

I recently wrapped my 1st stint as a podcaster. It was an interesting experience to say the least. It wasn’t something I ever envisioned doing but I didn’t want to turn down the opportunity.  It was a new challenge. And in all honesty, it was one I wasn’t always up for.

Now that the season is over I’m taking time to evaluate whether I want to do another season. If you listen to the season finale episode you’ll hear me joke about whether you’ll hear me on Special Chronicles in the future.

Honestly, I haven’t made any decision either way at this point.

There’s a lot to consider, now that I know what podcasting really involves.

-I have other projects I’d like to work on.
-Do I have the time for everything?
-Do I have the energy for everything?
-Can I produce enough quality content?
-Do I want to produce more content than I’m already producing?
-Do I have anything left to say that someone hasn’t said or can’t say?
-I went into this venture thinking it would be a temporary gig, although it lasted longer than I thought, that doesn’t mean it wasn’t still meant to be temporary.

And that’s just the short list of thoughts.

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When does one truly know when to step back, move on, or carry on?

I guess we’ll all find out the answer in the fall, at least in this case.

Lifeguards Do More Than Save Lives

I always found it odd when people said I was “more than up for the challenge” while I was growing up, especially when I really wasn’t given a choice in the matter. However, those types of voices get fewer as you get older, and I’ve discovered that I really do like a challenge.

One day while leaving the pool I noticed that there would be a swim challenge. After looking at the flyer, and checking my unreasonable expectations at the curb, I signed up.

I’m not the biggest fan of lifeguards, especially ones I see all the time and they act like they can’t be bothered by anything. So, my least favorite part of the swim challenge was that a lifeguard had the sign off on the number of laps I swam each day.

There were a few problems with this:

  1. No one other than the swimmer was counting the laps.
  2. Most of the lifeguards were clueless about this challenge so asking them to sign off came as a surprise.
  3. Keeping the record sheet dry was difficult, to say the least.

I had a feeling from the beginning that I wouldn’t reach the end point of the virtual swim but I still held out hope that I just might make it anyway. At some point, I realized there were few days left and I wasn’t even going to make it to the half way mark. I was really thinking I would make it at least that far.

Feeling defeated I thought about taking my foot off the gas and taking a few intentional rest days, but I also wanted to see just how far I would get by the end date. On one of the last days I got out of the pool and approached the lifeguard after writing in my laps.

Swim Challenge 16 Close Up

I didn’t reach my goal but that lifeguard refueled me, which people need once and a while.  It took some of the sting out of not reaching my goal and encouraged me to try if the opportunity ever comes around again.

Lifeguards are on deck in case a life (or more) needs to be saved but sometimes they don’t just do that, and that’s just as important.

The Gift Of GIFs

Graduate school has officially taken over my brain. I can’t formulate my own thoughts without consulting some set of instructions and analyzing them to death before doing anything.

readingtakesprecedence

And even then, nothing makes sense.

giphy

I embark on the assignment anyway praying I’m on the right track furiously texting classmates under the theory that, “if most of us do the same thing, we’re not wrong.”

giphy1

I still lose my mind the second someone says something that I consider to be criticism.

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Then I question every decision I’ve ever made in my entire life.

tenor

And then I swear it isn’t worth it.

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In the end I get up the next morning & do it all again.

0a5pkc

 

Why I: Survived Bullies

I’ve been called an old soul a few times, as most recently as a few weeks ago. This makes me laugh because I am nothing of the sort, at least I don’t feel like it.

It’s true I use to play At@ri, jumped on the St@wberry Shortcake/C@re Bear bandwagon before my peers, and I counted down until the premiere of the new D@llas series because I’ve watched nearly all the episodes of the 80s series; but I think that hardly qualifies me as an “old soul.”

I’m my parents’ only child; however they come from big families themselves so my extended family is vast, yet fairly close.

My aunt grew up taking care of my dad, because that’s what kids in big families do. Their birthdays are a day apart (and a few years), which just adds to their closeness.

My childhood was filled with family events and play dates of every type, shape, and size available.

For the most part I was around boys my own age or people who were older (& I won’t be saying how much in case some of those people ever find this blog). Plus only children are pretty much “grown up” by 7 since they spend so much time around adults, or so I’ve heard.

It’s all ingredients for an interesting childhood. As Opr@h says, “It’s what I know for sure.”

(This also explains why the first time I lived with girls I was almost 20, and had a really hard time with it all. And the first time I moved into a house with people I barely knew I was not-that-secretly happy that one was a dude. It’s an absolute myth that girls are cleaner, at least when it comes to bathrooms…..especially when it comes to bathrooms)

I’ve been more or less “at the end of the line” when it comes to development (CP aside). When everyone’s babies became kids, I was the baby. When the kids became teenagers, I was the kid. When everyone had school years in the rearview mirror I was looking at colleges.

Let’s not forget I was the little kid for all the big kids to practice parent, and just flat out have fun with. Although there was one time during the flood of “how are things going at school” emails and calls when an older cousin was having something of a midlife crisis and decided to share it with me, when I was 18 and trying to not flunk out of school.

The funny thing is, if you want to call it that, was that I don’t ever remember telling anyone I was bullied (except for begging my parents to let me transfer schools). My all knowing babysitter knew, but her younger sisters went to the same school and had classrooms on the same floor, so she had an exclusive to my preteen/teen torture.

If I ever said anything no one ever made a big deal out of it. It would’ve made matters worse anyway. Instead I was almost always given advice that didn’t pertain to the moment, it was lifelong advice. It would’ve been nice to have someone go in an “have a talk” with one of the bullies but what I got instead ended up being exactly what I needed.

Proof that there’s a light at the end of the tunnel.

And some pretty great people I get to call my family.

I survived being bullied because I knew the “b!tchy girl phase” doesn’t live in everyone forever. I saw enough of it in my home life to look past it in my school life, and when I couldn’t someone managed to get some sense into me one way or another.

*A similar version of this post was written on September 26, 2012

BADD ’17: In Defense Of The Able-Bodied

I’ve wanted to write this post for a long time, but it’s one of those “tread lightly” things, and that’s not my best skill, so I’ve put it off, but I think today is the day.

I’ve written before on whether or not it’s possible for those with disabilities to be ableist towards others with disabilities. While it’s a divisive topic I think it’s an important one to acknowledge and discuss in certain situations.

As excited as I was to join a swim team I knew I wanted to continue when the season was over, which ended up not being in the cards for a few reasons. I also knew the season was really just a start and I needed to find the next step.

I asked people for advice, people who have been around and faced some of the same challenges, but I didn’t exactly go how I thought.

Before I even made a viable connection, people tried to talk me out of what I had in mind.

It didn’t make sense to me, if the end goal was to create a more inclusive environment what was so bad about my plan?

I showed up to my 1st masters swim practice with extreme caution. I wasn’t sure it was going to work, especially after watching the junior team practice, but I needed to give it a try. I had 1 private session with a coach a few months before and I was still reaping the benefits. If I backed out of a chance at team practices I would regret it.

It was a hard practice but everyone seemed welcoming. I’ve kept a list of goals since I started swimming again. I had been steadily chipped away at them but things stalled, until this practice. I ended up crossing off almost everything else on the list.

Then nearly everyone who encouraged me to seek out other opportunities tried to talk me out of it, even when I didn’t ask for their opinion.

It wasn’t good for me to leave people “who are like me” or “could understand someone like me,” at least according to them.

I understand their concern, at least usually, but what confused me was these comments were coming from people actively working towards more inclusive sports. So, why shouldn’t I join an able-bodied team? Especially if it’s a better fit, in almost every way.

I know there are those out there who feel that I’m betraying “my people” but if the ultimate goal is for people with disabilities to be seen as equals to the able-bodied community so we need to become part of the able-bodied community whenever an ideal situation presents itself.

At least that’s what I think.

I’m not going to say that the change has been seamless. It’s been full of adjustments, not so great practices, and at times downright culture shock.

But I can say without a doubt that I wouldn’t be where I am today if I hadn’t made the change.

And that’s made me think a lot more about inclusion.

When we see a chance for inclusion we should take it, we need to take it. It doesn’t always come with the betrayal of the disability community, and if we keep seeing it that way then we probably should change our approach.

Inclusion isn’t a one-sided issue, we can’t just stand around and wait for people to include us. We can’t just yell, and bitch, and moan about it either, there has to be some meaningful effort on our part, and it doesn’t have to be some grand gesture either.

Sometimes “just” showing up and seeing what could happen is enough.

Blogging Against Disablism Day, May 1st 2017

Why I: Am Not Meant To Be A Catholic Blogger

I’ve had this post in mind since Benedict’s resignation. I don’t think I’m able to write it better now than a few months ago, but if I wait any longer I’m going to forget it altogether.

I found my first Catholic blog by accident. It wasn’t long before I thought I would be a good Catholic blogger too. At the time there weren’t many known Catholic bloggers, in fact many young adult Catholics were being told to stay away from internet Catholicism.

I thought I could be a voice for young adult Catholics like myself. It made perfect sense. The internet didn’t scare me & I had plenty of resources at my disposal (at least then).

However it didn’t take me very long to figure out that I wouldn’t be good at it. I did compare myself to other Catholic bloggers, but that was only part of it. I just wouldn’t be good at it. I’m not meant to be a Jennifer, Arleen, or Chelsea.

I don’t find God in church.

There was a time when I never went to mass at all. It wasn’t doing anything for me, except for filling me with rage & anger. Then there was a time when I went to mass daily. I have to do what works for me when it works for me. I can’t go to mass if I’m not feeling inspired to do so. Mass is a piece of the puzzle that makes up my faith life; it’s not the be all end all.

I struggle with modesty.

 It was a long standing debate between friends and me whether I was dressing modestly. In the end we decided that it was best to agree to disagree. I find wearing a dress to be incredibly uncomfortable, in fact I didn’t own anything that wasn’t pants for a long time. I don’t understand the obsession that modesty automatically means dress & immodest equals wearing a tank top. In wind a dress can blow & expose everything, pants don’t move. Tank tops are more complicated so let’s just leave it at I like to have all my bits and pieces covered.

The Church (or rather churches) isn’t accessible.

It’s true that it’s not accessible for people intellectually but that’s not the type of access I’m talking about here, although all types of access shouldn’t be ignored. Many people with disabilities can’t even get into a church to celebrate mass. It’s true that many churches have a handicapped row at the front of the church and it does provide a great deal of access for those who choose to use it. I however find a downside to it. I jokingly call it the “crippled and lame” section. Everyone wants to feel a part of the community. Putting people upfront, because it’s the only place there’s space, can make them feel like objects on display instead of being part of something. There’s also the issue of ramps & elevators…..

The pro-life movement.

I consider myself to be pro-life personally but on a global stage pro-choice. I think the pro-life movement overshadows many of the other issues the Church should also be taking a stand on. I also feel like there’s a piece of the pro-life puzzle that’s missing. We shouldn’t be ignoring other issues for the sake of one.

A feeling of lack of understanding.

I’m guilty of this as well, so I’m going to attempt to treat lightly. One of the biggest reasons I turned my back on the Church was the lack of understanding (and even the desire to try to understand). People were too focused on trying to heal me and tell me I needed to be a better person. People are different and share and express their faith in different forms, even among Catholics

I don’t know the Rosary.

At one point I’m sure I knew it, but not anymore. Even more shameful, at least to some of you, every time I try to learn I miscount my Hail Marys and/or fall asleep in the process.

I can’t be a good leader if I’m not a good follower.

I can’t tell people how to be a Catholic if I’m figuring it out for myself.

*A similar version of this post was written on May 10, 2013