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

A “Fit” ting Realization

I’ve made a few changes in my fitness routine. I won’t go into the details because I don’t know how much of the new will “stick” and how much of the “old” return, or if at all. It’s also more complicated than just feeling the need to change things up; although that was part of it.

In the midst of all of the change and transition I’ve realized something about myself.

I would make the worst workout partner on earth, possibly the universe.

Exhibit A: I’m on an elliptical next to someone else on an elliptical. I’m barely able to keep the machine going under my own power. That someone else inches from me is going close to 100 rpms (or whatever) while texting full conversations and listening to an iPod, like it’s no big deal.

I realize we look like an exercise infomercial, and he has no clue what he’s doing (and how his actions may be effecting the self-image of others.

I resist the urge to push him off the elliptical, mostly due to my personal safety (balance) than any other repercussions.

Exhibit B: I’ve just finished up a few minutes on the recumbent bike. A feat that would have been laughable not that long ago but now I can keep a steady (albeit painfully slow). The seat also has to be “just right,” pretty much the ultimate short people setting but not quite. I hear a lady behind me say she hates the bike (can’t say I blame her) because she’s too short (she’s actually a little taller than me). I think, she’s going to be pretty surprised when she realizes she’s going to have better luck today.

I watch her out of the corner of my eye and she peddles twice (or maybe it was four times) and quits.

I resist the urge to give her a five minute lecture on how it took me years to do what she just did and she gives in, because she probably surrounds herself with people who allow her to throw in the towel far too soon.

Exhibit C: I get to the pool 5 minutes “late” (5 minutes after opening) so all the official lap lanes are taken. I “trudge” down the pool ramp wishing it was deep enough that I could roll my wheelchair to the edge of the pool and “jump” in.

The lady in the lane next to me is doing “the old lady dog paddle.” She shouts to my mother (who has to bring me to the pool because of a lack of automatic door openers) that she forgot to close the door (the door closed by the time she got back to it). She does 2 more laps before getting out of the pool. She uses the ladder (which happens to be in my lane), she almost kicks me in the head in the process.

I stop myself from wanting to shout at her about noticing an opening a barely open door yards away but she can’t manage to keep her heals within striking distance of my eye.

Exhibit D: I’m using the upper-arm bike trying to keep a pace in the 50s rpm range. I realize I’m actually keeping steady in the mid-60s without much difficulty. Someone is using the upper-arm bike next to me.

It doesn’t take me long to realize I’m trying to out due them, without knowing how far they’re going or who they are. But I did get to 70 rpms.

Exhibit E: Lest we forget why I spend the extra money (which I don’t really have), because I’m not the best person to be left to their own devices. For all intents and purposes I need a “babysitter,” because if you tell me to do 3 sets of 10 of anything and walk away I’ll just make it look like I’ve done 3 sets of 10 & then lie to you about it.

But at least I’m honest about my dishonesty, within reason.

Exhibit F: Even when I win (a board game, cards, anything) I don’t consider it a real win unless it’s by a fairly large margin.

My name is Sarah, and I think I have a problem.

*A similar version of this post was written on October 15, 2014

 

CP See, CP Do

“Breaststroke, drill, 6 count glide.”

My coach says at some point during practice, somewhere between warm up and the time when I wish I was in bed sleeping.

I love breaststroke, even though my stroke is 100% pull and 0% kick, so just hearing the word “Breaststroke” makes me happy (or slightly less unhappy depending on the previous set).

But hearing the words, “Breaststroke, drill, 6 count glide,” at this point makes me roll my eyes (thank goodness for darkened goggle lenses).

Although it’s my favorite stroke the drills are killer.

Why?

I have no back end to speak of, literally I’m working with half of what everyone else has at their disposal, especially in Breaststroke. I’m well aware of this, at this point almost everyone else is too, but that doesn’t get me out of doing drill work, and on the rare occasion it does I’ve at least tried the drill.

But this time is different. I know I’ve done this drill, my brain just can’t pull it up. So, I turn to my teammate, “It’s pull, 1-2-3-4-5-6, pull, 1-2-3-4-5-6, pull. Right?”

She puts her arms in front of her and does the drill using every verbal cue to match the visual cues. My teammates (and coach) also know I do better with visual cues and having verbal cues doesn’t hurt.

I stay behind as everyone else heads to the other side of the pool. I’m sure I know what I’m doing but I want to be really sure. I scan across the lanes and pick someone to watch.

“The goal isn’t to go fast. Make it clean,” my coach says standing behind me. This isn’t new either. Although I took up swimming a few years ago, drills are still new. My brain is used to stop or go, not maximize what you have to use less energy. She’s now used to giving me a single focus, spelling it out before I completely tire myself out trying to do what I think I’m supposed to be doing.

“Don’t go fast. Make it clean,” I say outload and scan across the lanes one more time before I push off.

Pull.

1-2-3-4-5-6.

Pull.

1-2-3-4-5-6.

Pull.

I’m saying everything in my head while I’m doing it. Keeping my neck long and straight with my head down all while my arms wobble erratically in an effort to keep my body balanced. My chest is starting to burn and I can feel my heart beating lightly in my ears. This doesn’t feel like what I see anyone else doing.

I forgot to breathe. When am I supposed to breathe? Oh, yeah. 5-6.

Pull, breathe.

1-2-3-4-5-6.

Pull, breathe.

It’s better but still awkward. Eventually, pretty much an eternity, later, I touch the wall.

“That was a really nice Butterfly pull at the beginning of that last one,” my teammate says with a smile on her face. She knows I messed up & I didn’t realize it. I didn’t do a Breaststroke pull until my 2nd pull.

I’m mad, but at myself. I can’t even do things I like right, never mind well.

I remind myself why I’m here & why I’ve stayed with this group. A few months ago, I would’ve finished out practice and kicked myself until the next day, at least, over it. Now I know no one really cares how I do the fact that I try to do it is enough.

I’m lucky that I’m with a group of people who care about how I do but help me keep my personal expectations in check. I want to do things perfectly the 1st time every time. No one can do that. When someone laughs, they aren’t always laughing at me, they’re trying to get me to laugh at myself, because they’ve been where I am.

I’ve even luckier that I have a group of people I can watch. I can see it before I do it rather than just thinking I know what I’m supposed to do. I have a good idea of who to watch depending on the stroke, distance, and/or drill, and it really does help.

I sometimes joke that my team is a motor planning think-tank because sometimes it’s how I can get the most out of practice.

  • See it.
  • Plan it.
  • Do it.
  • Make needed changes.

Athleticism + CP = ?

Personal note: The timing of this post and the events in my personal life are in the realm of “God laughs at me, all of the time.”

Growing up people always seemed interested in whether or not I had athletic aspirations, conversations which never seemed to go how you would expect. I was always picked last in gym class and never could try out for a team. I was somewhat relieved when I went to a high school that didn’t offer team sports, then my answer could be “my school doesn’t have sports” without further questions. But that didn’t mean that I didn’t have athletic aspirations.

I didn’t think I’d ever become an athlete but now I can’t help but call myself one, if asked. Although I do get more quizzical looks now than I probably would have way back when people would ask about my interest in sports.

People think I swim as part of rehabilitation, that’s how it started but that’s not what it is now. Are their rehabilitative aspects of it, sure, but that’s not the primary goal these days.

I’ve made the mental shift from recreation and rehabilitation to athletic pursuits and then the physical shift followed.

As I spent more time in the pool I realized I needed to spend more time in the gym. The more time I spent at the gym has meant, among other things, that I’ve needed to spend less time picking myself up off the floor after a fall.

The more time I spend at the pool and in the gym the more I ate, and the more attention I paid to what I ate. I can’t just eat whatever I want and expect it to sustain me through a 2 hour swim, just one 25 yard sprint makes that point really fast.

Never mind the fact that people with CP burn calories at a faster rate than able bodied individuals, and that certain foods seem to have adverse effects on muscles prone to spasticity.

If I don’t have the fuel I can’t workout. If I don’t have the right fuel I can’t get the most out of my workouts.

Not everyone can be an athlete, but having a disability doesn’t automatically exclude you from becoming one.

People with CP can be athletes. I know, because I am one.

Owning It

After all my thinking I’ve come to a realization.

I think.

And it wasn’t even a result of all the thinking.

Instead a statement from the oddest of places.

“I can’t believe I get to live in this body”

You could practically hear my brain scream “THAT’S IT.”

I can’t believe I get to live in this body.

Not

I can’t believe I have to live in this body.

Which is pretty common statement when you have CP, because if your body doesn’t always do what you want it to do it’s not always your favorite thing and you resent it every once and a while. It’s a part of poor body image that no one ever considers; your image is poor because your body is often at times, well, poor.

Anyway.

It’s not that I had a poor self-image, other than the teenage years and whose self-image is great at that time anyway, but there were times I wished things were different. Mainly why I wasn’t naturally gifted at most things that interested me. I didn’t want to work as hard as I had to to do anything, which included working out.

I knew what I had to do to maintain function. I’d been told it countless times. I didn’t listen. I didn’t want to. I didn’t care. I wasn’t like all the other people I’d been told about. I was different.

I was in denial.
(Am I saying that I spend 20+ years denying that I have CP? Probably, yeah.)

Then I had my wake up call.

And rolled myself off to fix my mess.

Part one was surgeons.

Part two was all me.

And I thought I knew how it was all going to go.

I may talk a big game but I’m still in the early stages of figuring this all out.

I thought I’d recover from surgery, just like I have from all of my other surgeries, and return to some sort of status quo I’d been living with, and hope I’d have a good chunk of time before I had to repeat the pattern.

Because that’s how CP works.

WRONG.

I felt (and still do) so different with my new hips. I have my good (when I could tell my jeans wouldn’t fit) and bad days (when my jeans didn’t fit) with them. At first it was difficult to adjust to them. My brain recognized the correction but often couldn’t get it together to work with it. Even though it was/can still be frustrating it’s amazing.

I’ve come to a level of acceptance that makes every day fun in some aspect.
”Let’s see if I can do this.”

Some days I do.
Sometimes it takes more work.

It’s O.K.
It’s me.

I’m still in shock that this body is mine.

It’s really cool.

Work with what you have & own it.

Keep raising the bar.

You’ll keep surprising yourself.

*A similar version of this post first appeared on an old blog on February 25, 2011

Grad School: The 3nd Fall Semester

I’ve come to realize that I have no idea how engrossed I get in class until I sit down to write about it, without words that can be found in a Catholic encyclopedia.

This semester was up in the air for me up until the first day of classes, at least that’s how I felt about it.

This semester I finished fulfilling my required number of elective credits (I hope). I’d be lying if I didn’t say I still have some apprehension about it. There’s a level of “done but not done” I just haven’t gotten comfortable with.

The semester was fairly light in terms of workload since I was only taking one class, but other than that it was pretty challenging.

It was a small class, which I typically like. However, the make-up made it challenging for me, sometimes in a good way, sometimes not. I’ve gotten used to interacting with the same group of people in so many of my classes it was an adjustment just interacting with different people.

That alone made class hard.

You know how they say sarcasm should never be in an email? It’s kind of like that. If people don’t know you well, like at all.

I spend hours choosing the “right” words, and it turns out the “right words” and the “best words” aren’t always the same thing.

I can’t really tell you if I learned anything related to the topic of the course because most of my focus was on effective online communication (or at least trying to be better at it). I’m sure I learned something, the results will come with time, not unlike a lot of other topics I’ve studied in these last few years.

At the beginning of the semester I wish I could’ve taken more credits but now I can look back and see it as a nice break before heading into a heavy workload.

In all honesty, I’m glad things turned out the way they did, especially now that I don’t have to deal with it anymore, because it made me realize that I had become too comfortable in terms of how I conduct myself as a student.

I also read books that I actually enjoyed, a feat that’s hard to accomplish in graduate school.

Now onto the longest stretch of work I’ve ever had to do, and if I’m lucky at the end of that stretch will be the finish line (oh God please let it be the finish line).

Sunday Selfie

I’m not a fan of selfies. I prefer to be behind a camera taking pictures or have someone else that I trust behind it. I’m a fan of getting the right angle. Since the weather is getting cold I thought I’d post one of my favorite warm weather selfies.

imag0662

 

Changing The Healthcare Landscape

Asking a professional patient to name one thing they’d like to change about the current healthcare landscape can be like pulling the pin on one big grievance grenade.

Although I would like more of a community for people over the age of 18 with Cerebral Palsy I’m going to go with something more general and seemingly smaller, but it is one of my biggest frustrations.

Office staff.

There’s the Joint Commission for healthcare organizations.

There’s standards for doctors.

And nurses.

Why not office staff?

They make offices run. They’re invaluable people.

Some know this and use this to their advantage, others don’t seem to have a clue, or maybe they just don’t care.

I’m not saying I’ve left the care of a healthcare provider because of their office staff, but I have thought about it, more than once.

I think maybe there will be a time when that will happen, it just hasn’t happened yet.

If I could change one thing about the healthcare landscape right now, it would be to have some sort of organization that handles the oversight of the assistants of healthcare providers, because although they aren’t in themselves providers they do play a major part in patient care.

They aren’t just handling files and scheduling appointments. They’re handling a person’s life, especially if it’s someone who has a disability or chronic illness.

They aren’t just dealing with annoying people. They can be the lifeline between provider and patient.

I don’t need someone who gets over involved in my care, blurring the lines of professionalism but someone who at least attempt to acknowledge that I can’t just drop everything for an appointment.

Simply put, someone who reads all the information put in front of them before scheduling an appointment (for example).

When someone is rude, or downright mean or neglectful, I wish there was someone, someplace, to report them to. It isn’t a position with minimal consequences if mistakes are made. It can’t be “just a job,” when you’re working alongside people who hold the lives of others in their own hands.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Motivation Monday

I admire people who can live by one motto for most of, if not their entire lives. Mainly because I am not one of them. I’m the person who had seemingly random quotes posted around their dorm room, and sometimes down the hallway of their apartment.

My motto has changed, and changed often, but there’s one I keep coming back to in the last year and some.

11011092_10153313794244470_6275023184896421457_n

I like this motto for a few reasons. The first is that it’s simple, at least in understanding.

The execution can be as simple or as complicated as you want it to be.

In a way, it implies that although you can have a bad day it can be a singular thing.

There’s acknowledgement of history but greater hope for what can come.

It can be applied to short and/or long term goals.

There’s the implication that there’s just as much to be gained from the journey to reach a goal as well as the goal itself.

It reminds me that my best days are ahead of me if I want them to be and work for that ideal, no matter what others may say or think.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

The Manic Mondays Of A Professional Patient

There are a lot of things that can burn me out, especially lately.

One thing about being a professional patient that people tend to focus on is that you spend a lot of time depending on people.

What they don’t tell you, or maybe they just don’t know, is that you spend a lot of time trying to get to depend on people.

Let me explain:

A few weeks ago, I started to notice that I felt like I was walking with a rock in my shoe. Now I don’t have full sensation in either foot so the fact that I could feel something meant something. It’s not unusual to find a small rock in my shoe before feeling it in there first.

I pulled out the orthotic and inspected it and the shoe itself. Nothing. So, I shoved it back in my shoe and went on with life, but I still felt like I was walking with a rock in my shoe.

I called my orthotist for suggestions, and I’ve been playing phone tag ever since.

I don’t want to make the trip into the office if it’s an easy enough fix that I could handle it myself; because there have been times when I’ve made an appointment only to find out that I could get the same result with a phone call (and a trip to H0me Depot).

I don’t want to make the trip into the office if it requires a prescription either. I have a PM&R follow up in a few weeks so it doesn’t make sense to see the orthotist twice, well 3 times if I need something new.

In the meantime, I’ve been wearing my shoes as little as possible to avoid developing a sore of some kind.

However, that’s creating its own set of problems, my other foot is starting to hurt from compensating, for one thing. It’s not as bad as when I’m wearing my shoes but I think it’s only a matter of time.

I can’t just get a new pair of shoes, and I wouldn’t ether given my history with shopping for footwear, because it’s not the shoe that’s the problem (I don’t think).

It’s either the man made orthotic or my God made foot, either of which I can fix, at least not without the help of someone else.

There are times when being a professional patient feels like being part of a group project for a class. You do your part and then pray to God that everyone else does their part, and not mess the whole thing up.

I’ll make the phone calls and send the emails until I get a result of some sort. It’s just the kind of thing you have to do to make sure things get done.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.