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.

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.

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

PwDs Are People Too

For some reason people with disabilities (PwDs) are often seen as less than human or in some way super human, and this is just one of the many binaries we get put into. It’s frustrating, but at the same time a fact of life that we have to deal with, no matter the disability.

Just because I have CP doesn’t mean I don’t deal with the same things “normal” people do.

I get up and I go to work every day, just like everyone else.

I go to work and I make a life for myself, just like everyone else.

I’m making a life for myself, it may not look like I thought it would but I make it work, just like everyone else.

I’m making it work, sometimes because I don’t have any other choice, just like everyone else.

I make choices every day to get one step closer to my dreams and goals, just like everyone else.

I redirect my focus when my choices don’t get me one step closer to my dreams and goals, just like everyone else.

I make plans for what I think my life will look like in 5, or 10, or 15, years, just like everyone else.

I get mad when things don’t go according to the plan I had in my head, just like everyone else.

I lay in bed almost every night and think through my day, just like everyone else.

As I think though my day I think about tomorrow, and the tomorrow after that, just like everyone else.

As I think about my tomorrows I fill them with my dreams and hope that one day they will become reality, just like everyone else.

Next time you think a person with a disability is just so much different than you are think about what you think about every day. There’s a good chance that person with a disability is having at least half of the same thoughts you are that very same day.

 

A Deck Of Cards

I was sitting in a prospective student orientation hearing school statistics. In an effort to create a diverse school environment administrators had percentages they tried to maintain. It didn’t take me long to figure out my admission would be a slam dunk.

And it was. I was admitted; attending was another story.

It’s my first memory of thinking that my “different-ness” could be an asset.

It took me a few years to realize that this was indeed a disturbing thought for a 4th grader to have. That doesn’t mean that there were/are situations where this fact holds true.

There are times when I’ve tried to use having a disability to my advantage. Once you let the genie out of the bottle there’s no getting it back in, so you have to be careful..

 Life consists not in holding good cards but in playing those you hold well.”–Josh Billings

 Some time during high school I realized that my life was like a deck of cards. Sometimes my disability can be my ace in the hole. Sometimes it’s a joke(r). Other times it’s just another card in the deck.

I’d like to say that most often it’s just another card in the deck. Honestly that’s what I’d prefer. However that’s not how the world works, at least not now, but maybe someday.

I don’t walk around highlighting the fact that I have Cerebral Palsy. Just uttering the words “Cerebral Palsy” leaves people dazed and confused. It does open the door for educational moments but most of the time I don’t have the time, or the energy.

When it comes to day to day living I keep things as general as possible, but it’s pretty obvious I’m in the “otherwise abled” category. I prefer to see myself as just another one of “the guys” for a lot of reasons; a big one being I don’t want to hold my disability over people’s heads.

Think of “The Boy Who Cried Wolf” story we’ve all heard. If I brought up having Cerebral Palsy all the time what would that do? It would raise awareness, but would that be for a greater good? I doubt it.

There have been times when I’ve been looking for employment when I wondered if full disclosure would actually work in my favor. I mean companies put disclosures at the end of applications for a reason (& I’m sure they have quotas to fill, just like that school).

There have been times when I really wanted “that” job so the thought of using my different-ness as an asset crossed my mind. But how does someone do that without the potential for backfire?

I’d rather be the best one for the job when compared to other candidates. Not the candidate that filled a quota. I really don’t want to be the person who can’t do a job that everyone knows was a pity hire. (I’d rather not have a job if that’s how I get them)

Having a disability does leave room for other abilities to develop. It’s one of the best reasons to have a disability, in my opinion. As tempting as it is to broadcast my disabilities/abilities for my own advantage, it’s more important to show what I can do and let the work speak for itself.

Life is a deck of cards. Play them well.

*A similar version of this post was written on March 6, 2013

Acknowledging Your Personal Puzzle

There are a fair number of analogies of what it’s like to live with a disability, I find some more accurate than others, but countless people disagree with me, which is why there are so many analogies.

There’s also something to be said for basic language around disability, person first, identity first, whatever.

There’s so much to be said about so many topics that divide the disability community but I think I’m starting to find a common thread in all of them.

The path to self-acceptance or one’s own disability.

While I sometimes forget I have Cerebral Palsy, it took me a while to accept the fact that I had Cerebral Palsy, and that it did in fact inform every aspect of my life.

Once I figured that out I thought my life would get easier, at least somewhat, mentally, but it’s not really like that. It can actually be hard to be conscious of how your disability is integrated into your everyday life, especially if you find yourself thrust into the world of activism.

At what point do you highlight your disability, especially if it isn’t visually obvious?

How do you identify as disabled?

To what extent do you bring attention to your disability?

The Cerebral Palsy community is an interesting one, for various reasons, but not limited to how much a person allows CP to be part of their life. It’s always a piece of the puzzle, but the size of the piece is the question.

Some get to make the choice, others don’t, to some extent.

Making the conscious decision to embrace it, and all the opportunities that come your way because of it is a completely personal decision.

As someone who didn’t embrace their disability until their 20s I wonder just way I waited so long. I’ve gone back in my head wondering what and/or when I would’ve done something differently multiple times and I can’t come up with and I can’t come up with something, anything, that I would willingly change.

I guess that’s one of the pieces of my own puzzle.

Is Disability A Choice Or A Destiny?

Would you believe that sometimes I forget I have Cerebral Palsy, and that’s one of biggest things that makes me different from most people?

So sometimes it catches me off guard when someone makes a comment about it, not unlike this one:

 

Here’s the thing most people don’t get: from a disabled person’s point of view there isn’t another option, especially if their disability doesn’t come with a before & after, like Cerebral Palsy.

It’s only when we’re presented with a different point of view that you realize you’re different.

That there’s a chance you may not be able to do the same things in the same way as everyone else.

But that doesn’t really occur to you until someone points it out, and that your way is seemingly more difficult than the “normal way.”

You can think about it every time someone brings it to your attention but it’s easy to get dragged down that way, so if you’re me you try and avoid situations in which people might bring it up.

There’s also something to be said about making the conscious decision to not give yourself the option to do something, like letting your disability stop you from doing something, or anything.

It’s almost like when someone thanks you for responding favorably in a crisis. Sometimes there is no other option, at least not one that would end well for you (and probably other people too). Think of a first responder receiving an award and their response is, “I was just doing my job.”

Not “letting a disability stop you” when you have a disability is “part of the job.”

Because the only other option would be to stay in bed forever or kill yourself, and neither of those sounds more appealing to me.

Speaking for myself there are times when I do let the fact that I have Cerebral Palsy stop me from doing something I want to do (although I wish I had the choice with some “need to dos, if we’re being honest). But on the whole I don’t let it stop me.

I don’t let it stop me, because I don’t know any different, unless someone points it out.

I don’t let it stop me because there isn’t another choice.

Do You Want To Know A Secret?

So where was I?
Oh yeah, no one knows everything there is to know about me……

Shockingly I’m not shocked by this. You don’t accumulate close to (or over) 40 filled journals if you don’t have things you feel that you need to keep to yourself. I’ve never gone back and reread anything I’ve written in a journal. I have no desire to do so either. I’m almost positive there’s very little worth saving in any of them. I might have one journal’s worth of insights worth saving to reflect on at a later date. So why don’t I just throw them all out? Good question. The answer is I just can’t throw them out. It would free up a whole area in my already small closet but I just can’t throw them out. I feel sorry for the person who has to deal with all of them when I die. Out of respect for whoever that person might end up being I’ve come close to throwing a few of them out. But then I have a thought, throwing them out would be like ditching a friend.

When I can’t say it at least I can write it.
I can’t let that go that easily.

Most people would consider me a talker. O.K. EVERYONE who’s ever known me would call me a talker. It’s not something I’m really proud of believe it our not. Especially when someone says, “WOW you can talk a lot.” (By the way thanks to Bill for being the last person to point that out. I hate you and your stupid chicken hearts.) There’s a good reason why I’m “such a talker.”

It’s a major defense mechanism for me.
I’m sure you’ve heard, at least once, that talkers really have a lot to hide, although I prefer to say keep to myself. This is extremely true for me; especially with people I don’t know or feel I don’t know well. If I talk first, and keep talking you won’t have the chance to ask me anything too personal. You’d think it would be a good plan if you were the one doing the talking but honestly, I get to a point where I wish I would shut up. Yet I rarely will.

During my week in Portland I was mistaken as a major extravert, by several people. I had to laugh, to myself of course, when I heard this. No one knew that I sat in silence for almost a week before hand to prep myself for orientation. Very few people noticed that by Wednesday I keep finding ways to go back to my cabin just to have some quiet time. No one knows that I spent most of the trip to Spokane, which included a rather long detour, sleeping, or rather recovering from such a taxing week.

My “extroversion” is just covering up how introverted I am.

I come from a big family. (S)he who yells loudest might be heard. We have 6 different conversations with 6 people sitting at the table. Everyone easily goes into their own world while becoming part of other people’s worlds. We can have 6 conversations while playing a board game together, with one of us talking on the phone to someone else, while eating lunch, while swapping goods and discussing the remodeled bathroom. It really is a fun family dynamic, even if it does make an outsider want to run for the hills.
I have so much fun with my family sometimes that I do wish I could do it every day. Then I remember….
They exhaust the hell out of me.

I didn’t want to go to my prom. I wouldn’t have if certain people didn’t drag me. I did have a good time but I would’ve been just as happy sitting at home.

I went to the charity ball once in college, for all of the same reasons as my one middle school dance. I had a much better time than I did at the prom. Of course, appointing myself event photographer for my group certainly helped. It was one of the only times in recent memory that I didn’t think, “I could have just as much fun by myself.”

I went to only one dance in middle school. I only want because I thought I might regret not trying it at least once. I hated it. Going to the diner after was fun but I could’ve had the same meal any other day at the same diner. In fact, I have and had a much better time than I did after the dance.

Yes, I realize I just gave 3 very similar examples but not much differs in different situations. My point is I prefer to be around people I know. A small group of people I know. I knew most of the people at the charity ball and would call them friends (unlike the other 2 examples) but I still stayed with the group I arrived with. Small groups work best for me with people I know.

What about group projects you ask? No matter if I know my group members or not my philosophy is pretty much as follows, get out of my way, leave me alone, when I want or need any other input I’ll ask. Most importantly let me do the work I need to do,

I’m pretty sure if I didn’t think about the possibility of regretting something later on I’d never leave the house. I know if my desire to see different places wasn’t as strong as it is I would never leave.
But I wasn’t always this way.
So what changed?
I’m not really sure however the fact hadn’t changed that I’ve gone from being O.K. socially, maybe not perfect but I could get by, to being one step away from desiring to be a hermit.

Yes, the life of a hermit does have a certain appeal to me.

Everyone has secrets and things they want to keep to themselves. But there’s a group of people who let their secrets become bigger things. They let them grow into walls.

I’m one of those people that let their secrets become walls.
The walls became a fortress.
The fortress became the only place I can really be me.
But the fortress has a moat.
The moat doesn’t allow anyone else in, as reinforcement.
But here’s the thing about my fortress……
I want other people to know who I really am.
Too many people have let me down for me to do that easily.
If you hang in there you’ll see who I really am.
Hang around long enough to prove to me my walls can crumble.
You just might like who I really am, even more than you like who you think I am.

*A similar version of this post first appeared on an old blog on October 28, 2008