Cerebral Palsy & Aging In Community

This is probably going to be more like a “patchwork post” so bear with me this could end up going anywhere.

Having Cerebral Palsy can be a lonely experience, especially if you don’t have any friends with CP or know anyone older than you who has CP. Things have changed thanks to social media but there are times when that’s not enough.

I didn’t have any serious friendships with people with CP until my 20s but I knew of people with CP so that was enough for me, until I got older. I’m not sure what changed but something tells me it has to do with post college life (and it seems like it doesn’t matter what your ability/disability is).

I had a great group of friends in college, especially during the second try, but they were always down the hall, in class, or in the same social circle. The majority of them are/were able-bodied and the fact that I had CP wasn’t really high on the list of topics.

But as our careers as undergrads were coming to an end we were warned, and I should have listened, like even a little.

Once I graduated my bubble was gone, I had to look for my community. I couldn’t just wander down the hall or into the dining hall and interact with people who I knew and knew me. I had to work for it (and I still do), add in introversion and it’s a tall order.

Life after college is where things really started to be different, almost all of my able-bodied friends found “a place to land” whether it be grad school, full time jobs, or ministry. But I moved back home, the last place I wanted to be, and tried to start my life after college.

I never thought of networking my way through college, like some do, and didn’t even consider how being disabled would factor into my future and how networking may have helped (and in all honestly, I don’t think anyone else ever brought it up either).

So, I would sit in front of my computer for hours on end seeking out community (and a job). I did this for two reasons, 1) social media was picking up steam and 2) I didn’t actually want to put forth the effort to go out and meet people face to face, again introvert.

I found a community I had been ignoring because of the internet but I’ve still lost the immediacy of community that I had in college (and by extension my 20s). It’s a “six of one, half dozen of the other” situation, but it doesn’t have to be that way for everyone.

I don’t regret anything I’ve done (or not done) in my life but if I had to give any advice to someone else who can identify with some portion of my life, I have to say I agree with the advice that got my wheels turning when I thought to write about this.

You have to put more effort into what you want to maintain once your environment changes, social bubbles are great, but they don’t last forever; lay the groundwork when and where you can before it all poofs away.

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Growing Up Disabled

Some people don’t like to admit it but there’s a difference between how people treat people who were born disabled verses those who became disabled as a result of injury, age, luck, etc. (I won’t go into the differences. I just wanted to point it out for further context).

Since people are born with Cerebral Palsy it can create an interesting set of challenges. One being that people we grew up around get so used to us that it’s almost like they forget that we’re not able-bodied.

Because Cerebral Palsy is a brain injury that effects movement and coordination it also effects the day to day lives for those who live with it. It’s not something most people who have Cerebral Palsy consider on a daily basis, or even on an occasional basis, because it’s not like we’ve lived a previous life that we can compare our current one too.

I was the one who knew how long it took me to get to every one of my classes in college. If I left somewhere 2 minutes late to get to class, I knew I had a higher likelihood of being late than my classmates. Because I can’t “just walk faster,” to make up for lost time.

I’m the person that lays out their outfit for the next day (or longer) because I can’t just throw my clothes on and walk out the door. I’ve often gotten trapped in a pant leg or sleeve because of one wrong move. And the faster I move the more likely I am to get slowed down by the most basic thing.

And then there’s shoes, if you wear AFOs (or even just one) it’s not that easy to get your foot into a shoe. It’s something you get used to, to the point where you don’t really consider how long it takes you, unless you compare yourself to someone else’s ability to do the same task.

Then there are the times when friends are waiting for you, for what feels like forever, and you know that they’re waiting for just you.  Or even worse encourage you to “hurry up” because they’re excited to embark on your plans. Do I really have to explain (again) that I can’t “hurry up”?

Growing up disabled is an ongoing process, especially if you have Cerebral Palsy (or any other disability typically associated with children). It’s not just something you have to come to accept but your family and friends have to go through a similar process as well.

The Return Of The Envelope

I was standing at the admissions desk as NRH filling out paperwork before my first ever PT session as an adult. I wasn’t freaked out about the PT. I’ve done that enough to have an odd comfort level. The paperwork was annoying, but typical, until I got to the “emergency contact” portion. That’s when I freaked out.

Who should be my emergency contact?

Typically it’s my mom, but I had second thoughts. She was 6 hours away if the traffic cooperated. If there was going to be a real emergency that required the informing of someone they should be closer than 6 hours away. I thought a pizza delivery “30 minutes of less” window would be ideal. So I put down my roommate. We barely knew each other at that point & couldn’t think of a single person who I knew would be O.K. with it, without asking first.

“When I was at NRH today I had to give an emergency contact. I listed you. If you’re not O.K. with it I can change it.”

“I’m fine with it. Just let me know where you keep your stuff. I keep an envelope of all my information right here.”

Well that was easy.

Now I just had to put together an envelope:
* Medical history
* Surgical History
* Important Phone Numbers
* Copy Of Insurance Card

I left it in my desk until I graduated. When I moved across the country I told my housemates where they could find my info, if needed, because I put down the house number as my contact (meaning there were at least 3 potential contacts).

Almost 2 months ago I went to urgent care in the worst pain of my life; because I needed another reason to put off having children, if at all. I sat in the waiting room while my mom filled out my forms trying not to gag & praying I’d blackout, since that seemed to be the only potential relief.

I was sent to the ER where I sat for the equivalent of forever, before I had to answer all their dumb questions AGAIN. I wish I had my envelope back, more than one actually.

“Can we hurry this up please?!?!?! I’m in a lot of pain here & I’m gonna barf.”

(Painfully unhelpful response I won’t repeat)

Twelve hours later I was being admitted to a medical unit because my test results were “inconclusive.” Guess what happens when you get admitted on a unit? You have to answer the same questions all over again, and this is after 24+ hours of no food, no sleep, a full day of tests, and lots of M0rphine & Z0fran. I was literally falling asleep when the attending came to do her new admission rounds, because at that point you really care what a hospitalist is/does.

The conclusion of all the “in-conclusion” was that I probably passed a kidney stone & it wasn’t my appendix. The evidence being one swollen kidney since no one was able to find the kidney stone or appendix.

My conclusion? Time to bring back the envelope.

I had a follow up with an urologist in order to attempt to put this whole thing to rest since my goal is to never repeat this experience. The first was to tell me that it does in fact look like I passed the stone & to give them more details about my time in the Big House. The second was to go through everything again with the urologist after an ultrasound.

I’m “back to normal.” No restrictions, since no one seems to be able to even guess how this all happened. It could happen again, or not. My appendix is still missing however.

*A similar version of this post was written on August 21, 2012

The Matter Of Discernment

The matter of discernment puzzles me.

I was 20 before I even heard the word discernment, and then I heard quite regularly at that. It didn’t take long before “discernment” sound like the magic word for some secret society. It annoyed me to no end for a long time.

I’m not much closer to discovering what discernment really means ten years later. Although I have been told on numerous occasions that it’s not a “get out of jail free card,” so I should really stop treating it like one.

Yeah, I’ll get right on that.

It’s one of those necessary evils of life, especially if you’re Catholic, if you ask me.

There seems to be an implication that one cannot possibly find their vocation without some sort of discernment.

While this is more or less true I don’t think it can be expressed in such a cut and dry fashion if people are really going to understand discernment.

I understand that there’s no definite “right” or “wrong” way to discern.

However I’m not sure I’ve ever done it “right,” or at least the best way for me.

I have, however, done what everyone else has done.

I’ve gotten up for the sunrise masses and before class rosaries (mostly).

Gone to prayer groups and Bible studies.

Rarely ever, and I mean ever, missed fellowship or adoration.

Made every retreat possible, even a yearlong SEEL retreat that included spiritual direction.

I even joined a discernment group (albeit for other reasons, at least initially).

And they’ve had great success, although a different definition of success than the secular.

I have the dubious distinction of being a religious sister’s prayer partner for a few months during our junior year (during her final pre-nun years). Just to give you an example. I like to tell people that I helped facilitate her discernment process, because that’s how things happened in my head.

It took me a while to really get that discernment has no timetable. Although it eats on my nerves when people say they’re discerning something and you know for a fact that they’ve been doing it for years. Talk about using discernment as a “get out of jail free” card.

Let’s not even talk about the people who are so certain of their plan because they’ve discerned it within an inch of their lives and then after a day (or what feels like a day) they do a complete change of direction.

Because the mysteries of discernment go both ways, and every which way.

Discernment’s never been my thing, at least not in the same way swimming or encountering unpleasant people seem to be my things.

It would be awesome if God would just speak very loudly and very clearly after a period of prayer and self-reflection.

Unfortunately, discernment doesn’t work like that either, at least not for most people.

Discernment is important. It’s also becoming a lost art in some aspects. Just don’t ask me for advice on it, because I have no idea what I’m doing.

*A similar version of this post was written on August 6, 2014

Life In Boxes

Life likes to put people in boxes, sometimes multiple boxes at the same time. I tend to not fit in very many boxes easily and find it easier to live outside the box most often.

In my technical theatre course during college the professors (we had 4) constantly encouraged us to “think outside the box,” so much so that it became a running joke, to the point that during a group project we backed a presentation with a deconstructed pizza box (we weren’t planning that, but it went with the box motif).

I moved so often during college that I turned it into a game, how many boxes does it take to contain all my belongings, trying to use the least number of boxes possible. I pride myself on the fact that my friends who worked of the campus moving service called one of my moves, “the easiest ever.”

My course work is kept in boxes, which remain open or unopened depending on the circumstances of the semester, week, or day.

The majority of my swimming gear is kept in a box, made up of meet related essentials and back up equipment; old goggles and caps, extra suits, and racing gear. It’s kept in the closet, just in case I need to grab something quickly (caps rip at weird times). And it’s more convenient in terms of packing for a meet, because even a 4-hour meet involves more than you’d think.

I asked for a new tech suit for Christmas, hoping that I’d at least get one for my birthday. I wore a tech suit for all of my meets last year and learned all too well of the love/hate relationship swimmers have with them. Basically, they’re meant to be tight, too tight even, expensive, and tend to not last very long.

Knowing what I know now I set out to find a suitable option for my wish list, because my now old tech suit has been discontinued, I knew I couldn’t just go down a size or two and feel like I had done due diligence.

I decided to try and be as exact about this as possible, meaning this time look at actual size charts. It sounded easy enough, except it involved number conversions I wasn’t too familiar with (ahem, the metric system) which needed dealing with before I could continue.

Turns out I was wearing a tech suit that wasn’t just too big, it was almost 10 sizes too big, at least according to the sizing charts. I wasn’t going to go that small right off the bat, although I haven’t completely ruled it out eventually.

I found something close to what I was going for, within reason of course, and crossed my fingers.

I opened the box a few weeks later to try it on before my first meet of the calendar year.

The good news is it gets easier to put on a tech suit with practice, but it can still be a pain to do. The not so good news is it wasn’t as snug as I thought it would be, and for a while I thought maybe I had gotten used to wearing suits that are too tight.

I looked at the box (and rechecked my measurements).

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As it turns out that my actual size according to my measurements, as opposed to the size I wear, isn’t even on the box, which I had to laugh at.

It’s just another example of how some people aren’t meant to live within a box.

To Successfully Succeed

Confession: I can’t believe I haven’t written about this before. If I have and someone knows where the post is, would you be kind enough to post the link in the comments section. I’m not that great at virtual organizing so even if I did write something I can’t find it.

 Katy asked,
“How do you define success?”

 My answer to this question has very little to do with the fact that I have Cerebral Palsy, but I’m sure it colors my answer to some extent. I hope my answer gives you more insight into the fact that people with Cerebral Palsy are more like those without Cerebral Palsy than they are different.

This is question that’s like, “Describe your ideal summer vacation,” the answer changes depending on where you are in life. At 5 your ideal summer vacation is going to D!sney World. At 25 you’re just hoping you’ll be able to afford a summer vacation (we won’t go into how I feel about summer vacations these days).

If you asked the pre-college me & new college student me I would define success as being famous and having everything that goes along with it, or at least all the good parts you can think of (not the bad parts).

If you asked my recent college graduate self what my goals were she’d tell you she just wanted to finish the final projects and graduate. I never wanted college to end but I wanted to workload to end. I guess I’ve been a sucker for community longer than I thought.

These days my definition of success has changed a lot. I don’t want to be rich or famous. Nor will I feel unsuccessful if neither of those things happens, especially since that’s not how I chose to define myself anymore.

These days success comes in a variety of different packages.

A work day that involves minimal paperwork and I’ve reached daily goals I’ve set for myself as well as reaching the staff wide goals? Success. Making positive strides to live my word for 2013? Success. Networking to further my business? Success. Being able to pay my bills and have my insurance pay what they’ve promised? Success.

Things seem simpler now, not to mention more depressing now that I’ve written it, but it’s not really. My priorities have changed. It happens with most people, I’m guessing. It would be awesome to be able to travel more or take more “time off” but it’s not in the cards, at least in the recent future.

In terms of concrete things that I would like to be successful at, I would love for my business to do well enough that I’d be able to quit my day job and still be able to support myself. It would be nice to be able to be in a healthy relationship and maybe have a family, but right now I’m not planning anything other than being able to take care of myself. I’d really like to be one of the few small business success stories out there (Inquire if you dare!)

On the first day of classes every semester at least one of my friends would write, “I will do my best to successfully succeed,” it’s been something of a manta ever since. There are days when success is smaller than others, but it’s still success. What I really want is to succeed successfully throughout my life, meaning I want to do well without causing harm to anyone else, self-included.

*A similar version of this post was written on March 20, 2013

Get A Job!

At the beginning of my last year of formal education I faced a similar predicament as most of my peers. I had determined pretty quickly that graduate school was not for me; the only post-graduation conclusion I came to faster was religious life was most certainly not for me. I had one choice left.

I needed a job.

A task I failed in such spectacular fashion that it’s only by the Grace of God that I can tell you that there’s hope (and a happy ending) for everybody.

I made the decision to put off applying for jobs until my final semester, something I don’t recommend as a general rule. I knew I was heading into a world of low paying jobs regardless, so why not live in ignorance for a little longer?

I had every intention of going into the entertainment industry, or arts ministry. Neither of which are areas in which your average college career services office can help you with. I think I set foot in career services twice.

Most arts related departments know that they have to fill in the gap. That’s why they have this thing called “lab” or “practicum.” a time when most of the department gets together and discusses work, what you’ve done, what you’re doing, how to do what you want to do. You also spend a lot of time doing seemingly self-centered things, like discussing head-shots and monologue choices (these things do have an actual purpose).

Fall semester of my senior year I had a full load of drama classes. I was also helping put together my classes answer to the Oscars. I was up to my ears in drama, with a capital D. It’s a drama major’s dream, until you’re actually living it.

Living your life at an eleven isn’t all it’s cracked up to be. (Spinal Tap, anyone?)

I decided to put off any auditions or arts related jobs for a while, so I focused on long term service applications, until I printed out a couple. I was finishing my passion project and putting together a production. This “job thing” could wait until after graduation.

Right?

Yes and no.

I think you should know your limits. If you can’t devote adequate time to something you need to let something go. I like having a full plate but I’m not a fan of getting a bigger plate when the one I have is full.

However, my putting things off until I had more time turned into an unintentional gap year; there’s nothing wrong with a gap year, but when you do nothing productive with it you’ve gone from having a full plate to being stuck in a big hole.

I should have taken the advice given to me. I should’ve taken the help that was offered as well. I should’ve taken advantage of the resources around me while I had them.

I should’ve (at the very least) made a resume!

That disability support services office I had a love/hate relationship with? I shouldn’t have had such an “I can do it myself” attitude (emphasis on attitude) when they inquired about my plans for the future.

I went into the job search process assuming everything would all work out, and eventually it did. But people should learn from my missteps.

I should probably also tell you that I’m not that great at interviewing (I’m even worse with auditions) so I could’ve used the extra practice. Yes, I’m saying I should’ve applied for job I didn’t want/didn’t think I’d get just for the interview experience.

Getting a job (& keeping a job) with a disability should be no different than the non-disabled population. Now that I’ve said that, that doesn’t mean that the process is the same.

There are “extras” to consider during the search & application process:
Can I get there?

-If you don’t drive don’t assume that there are transportation options, even if there are they may not be reliable.
Can I perform the duties asked of me with no (or minimal) accommodations? This Includes “other duties as assigned.”

-The ADA outlines reasonable accommodations but I’m leaning “reasonable is up to interpretation. Therefore, look for jobs that keep accommodations to a minimum, as close to none as possible.

Is the workplace accessible for me?

-My current workplace is not accessible for most people with disabilities. When I used a wheelchair full time post-op I had to rely on my coworkers for a lot. We had to set up a mini office downstairs for me to get any work done some days. There are still days when things aren’t accessible for me, but I make do.

Can I handle the workload?

-If you’re prone to fatigue this is something you have to consider. Can you still do your job after a bad night’s sleep? And all that goes along with it?

Is this a job you see yourself in for the long term or the short term?

-If this is a position you see yourself in for the short term don’t stop looking for the long term. That short term may end up being a long one.

Should I disclose my disability?

That’s up to you. There are situations where you should or shouldn’t (as in don’t need to). Don’t lie. Most importantly whatever decision you make don’t let it be motivated by fear.

The ADA has done a lot for people with disabilities but there’s still a long way to go. You may feel like you have to work twice as hard to get half as far as a coworker. That may be true but you’ll be making it easier for the next person who comes in the door.

A similar version of this post first appeared on an old blog on March 5, 2013

 

When Liturgical & Secular Collide

Last year (in particular) I had to juggle multiple schedules. The concept isn’t a foreign one, everyone does it every day, at least in the majority.

Although I doubt a liturgical calendar is one people rarely consult, unless they’re Catholic.

However, it’s one I had to basically live by, not counting the fact that the Church also lives by it.

There’s a certain amount of freedom that comes with not having to worry about commitments tied to a calendar (and then having them be graded) and I’d be lying if I didn’t say I was enjoying it, especially when the following post started appearing on social media:

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For those of you not familiar with Lent things can get complicated when the liturgical period overlaps with secular holidays, and even birthdays.

My birthday fell during Lent during college, my 21st birthday no less, my roommates planned a party for me (due in part because I was the only 1 of the 4 of us who had a birthday during the school year). It seemed like it was going to be a huge party, at least in terms of what I can handle for a big event, but it was during Lent.

Lent is a time when people tend to give something up (or do something enriching) for 40 days. My friends gave up drinking or sugar and/or took up a stricter practice of personal prayer, so the party ended up being more like an open house for all our friends. Whoever wanted to stop by did, and I took calls from friends apologizing for not coming by, but it was Lent, and they made a commitment.

I understood, some of them I envied in fact.

Why envy? Because some were making and keeping commitments I knew (and know) I wouldn’t be able to keep (even all these years later).

There’s often talk, and concern of what Catholics should consider a higher priority, the Catholic world or the secular world. I understand it and don’t at the same time. It’s an issue of balance, and that looks different for each person, not to mention personal values and priorities.

I, personally, like to see what happens when Liturgical and Secular collide. I like to see what others do, or not. It’s fun for me, albeit in a weird way, and it helps me figure out my own feelings, priorities, and whatnot.

12 Days Of Christmas, Kinda

There are so many reasons why I hate the start of the Christmas season, at least the commercial version of it. I’m not sure when it started but I was ecstatic in college when I was given an Advent calendar that included the Christmas Octave.

My cousin says it’s because I know too much, that may be the case now, but back then I think it was just an annoyance.

I hate having to buy Halloween decorations in early September, that Christmas movies run 24/7 on some TV stations from October 1st through New Year’s, and the supposed “war on Christmas, among other things.

I look for anything for an escape, at least until Gaudete Sunday, so imagine how I felt when my coach told the group about the “12 sets of Christmas” challenge.

I’ve heard stories about swim practices during holiday breaks, “Grinch week” or “hell week” are common terms, although mostly in younger groups. Usually time around the holidays is devoted to fun games that happen to double as technique work or some sort of cross training, so I thought the sets would be like that.

No.

It was going to be unpleasant, to the point where I would probably hate it.

I tried making the argument that it was Advent and not Christmas, at least at the time. I threw out the “Catholic card,” knowing it wouldn’t get very far but it was worth a try. It wasn’t totally bailing on the challenge, just putting it off. Anything that would buy me a few more days without time trials makes for a better practice.

However, the “12 Sets of Christmas” was to be completed in December. Thus, covering both the Advent and Christmas seasons, more or less. So even if my argument had held up it wouldn’t have been for long.

It did get me to focus less on Christmas and more on what I was actually doing, which is a good thing, and an essential for a 400-yard Individual Medley, for time, among other things associated with swimming well, or at least well-ish.

I survived Advent and Christmas, and the associated swim sets, actually, I think the swim sets helped take the edge off the intensity of the holiday season.

Although I think it’s weird that the Valentines paraphernalia made an appearance during Advent.

Why I: Joined A Discernment Group

Ten years ago I was looking to make a fresh start after a near crash and burn of my academic career & a list of personal issues. (Side note: The fact that I started college more than a decade ago makes me feel kind of old.)

Here’s what’s awesome about going to a university with an active campus ministry:

There’s always something going on.

It’s almost kind of ridiculous how much stuff you can be involved in (or not).

At the time I wasn’t a practicing Catholic, in fact I was still in the recovery from Atheism phase of things, because that kind of journey practically requires a recovery period. I called myself a Christian but I wasn’t ready to “drink the Catholic k00l aid” just yet.

I steered clear of any organized group outside of the theatre department my freshman year and I was reconsidering that plan for sophomore year. The definition of insanity is doing the same thing and expecting different results, so I didn’t want to do the same thing.

There are always plenty of things to do in a theatre/drama department as well. There are always “other duties as assigned” (to put it one way) or a friend is working on some sort of project at all hours so if you want to see them it’s best to go to them (and then you end up helping on the same project, somehow). But I didn’t want to be a “drama kid,” at least not exclusively.

At some point during orientation, sometime after neighborhood orientation, I huddled into the campus ministry office with other new students to hear their “sales pitch”. This was some place I wanted to be involved. I knew that from visiting a friend earlier in the year. The how was the part that needed to be determined.

I’m not a try everything once type of girl but that’s pretty much what ended up happening. The first few weeks the only thing I had second thoughts on was solemn adoration; anything labeled solemn or somber means I’ll laugh uncontrollably. I needed to be better versed at adoration before the sound was turned off.

The first group I showed up for (I think) was women’s group. I loved that group. In fact many of the ladies I met thanks to that group I’m still friends with today (maybe I’ll tell you about that someday).

The next night discernment group would be meeting. I had no idea what “discernment” was but I figured it would be similar to women’s group so I showed up.

I probably should’ve looked up what discernment was before I decided to go to the group. But if I did I probably wouldn’t have gone.

Instead of sitting in the lounge area we met in the prayer room. And instead of one of the campus ministers facilitating there were two nuns, from The Little Sisters of the Poor (an order I knew nothing about, but have come to love dearly).

At some point during the hour I realized I was in a room full of ladies who were considering becoming nuns. I was in the wrong place, but I didn’t want to get up and leave (for fear of embarrassment only).

I may have countless sisters these days, but back then I had only known two, and the impression they left wasn’t one of full warm & fuzzy memories.

I left that night thinking I probably wouldn’t go back (because I wasn’t even in the same hemisphere of that life path) but when Thursday rolled around again I did. I’m still not sure why. The funny thing is I kept going. I think I only missed a few meetings during the year, when being a drama kid had to take a front seat.

I even went the night when we’d be saying the Rosary most of the time. When I grasped even less of it than I do now & I had to borrow a Rosary from the spares that someone always seemed to have on hand.

For me it wasn’t about discernment, at least not at first, it was about meeting people who just might be like minded. When that didn’t work out so well it was about having concrete examples of what I might aspire to. Not to mention meeting some religious sisters who were not only nice, but they went out of their way to invest in others.

I will never ever forget that Sister Mary David told me it was perfectly fine to fall asleep during adoration “because the Lord knows you need your rest.”

Never mind that I had agreed to sit up with the blessed sacrament only to fall asleep face down on a futon that was in our makeshift retreat chapel.

My original intent couldn’t have been any more off. However I think I got a lot more out of it than I realize (yes, even now). I made a mistake in judgment but it was one of the best mistakes I could’ve ever made (especially given my history with mistakes).

Even if I have come to have a love/hate relationship with the discernment process.

*A similar version of this post was written on September 4, 2013