Sunday, July 20, 2014

Pennies and Cups, Highways, Pride, and Asking for Help


I'll admit: sometimes I relish those few moments when I first meet someone new. If I'm sitting, they can't tell that I have CP. Every now and then, they'll ask me if I'm on any sports teams, which catches me completely off guard because anyone who knows me would know not to ask that question, but to be honest? It feels good. Normal. 

"Nope," I say. "Sports aren't really my thing!" 
               
And then—when I stand, their eyes flash to my stiff legs and I can tell they regret asking that question. I've always kind of wondered why they had that "deer in headlights" look in their eyes, but even I'm uncomfortable with my disability sometimes...and if I'm not comfortable with it, how can I expect them to feel at ease?

I've been trying to rid myself of the embarrassment, but it often creeps up when I least expect it. 

At the beginning of last semester, for example, I had to schedule a last-minute meeting with a professor. Her office is a little bit off-campus, so in the past, we've agreed to meet in an area that was more easily accessible for me. I felt really awkward asking for that accommodation, though—at the end of our first meeting, she said something along the lines of, "You should really come to my office sometime...it's pretty cozy!" and stupid me, I thought she was hinting that it was too much trouble for her to meet me somewhere else, when she was probably just trying to be friendly. So this time, I didn't mention anything at all about meeting her somewhere else...we set up a time through email and I said I'd be there.  

I was aware of her office's general location. I was not aware, however, that getting there required walking down a steep, icy hill, across a busy highway, down a set of cement steps, and up three flights of a very narrow, rickety staircase. 
 
Do you know that sinking feeling you get when you're halfway into something and it suddenly occurs to you that it was a stupid idea? You guys, I pressed the pedestrian button to cross the highway, but it changed before I was all the way across. Please don't kill me, please don't kill me, please don't kill me. (Spoiler alert: I lived.) Thirty minutes later, I finally found myself standing in my professor's doorway, and when she saw me, her expression was one of shock.

"How did you get here?" she asked."Ohmygosh I didn't realize it was you who'd scheduled a meeting...why didn't you ask me to meet you on campus? I can't believe you walked all the way here, the day after a snowstorm." And then, after our meeting, she called over her shoulder: "Please be careful walking back! Some kids got hit a few years ago crossing the highway even after they pressed the pedestrian button." You don't say?!
 
After that experience, I realized that I probably should have just womanned up and asked her to meet me on campus. It's not worth risking my life and well-being for the sake of my pride.
                
But this wasn't an isolated event...oftentimes I find myself unreasonably uncomfortable about situations that arise as a result of my disability, and I'm not quite sure why.

A few months later, my best friend and I were in our psychology class, and we had to perform a simple experiment on each other. One of us—the experimenter—would have to hold a penny about a foot above a plastic cup and move it back and forth, left to right so that it passed over the cup every few seconds. The other—the test subject—would try to get the penny to land in the cup by telling the experimenter to drop it at the appropriate time. The test subject would perform this first with both eyes open and then with one eye covered.

This task was supposed to test depth perception.
               
"Would you like to be the experimenter or the test subject?" my friend asked.
               
Instantly, I felt the warmth flood to my face. "I, um...I don't have good depth perception." As a result of my CP, my brain can't process depth very well and my eyes don't work together as they should. People are usually surprised when they discover this fact about me, as I manage pretty well. I scan surfaces for shadows (depth cues) and discretely slide my heel against steps to test their steepness. So it's usually something that I forget about because I can judge depth pretty well from other cues; I can walk up and down stairs with relative ease, and I can drive a car, although parking took some extra practice. But in this experiment, there were no objects nearby for comparison, and there were no shadows.

"Oh, okay! I guess you'll have to be the experimenter, then!" my friend said, completely unfazed.
                 
I cringe just thinking about this, but as we soon found out, even being the experimenter required some degree of depth perception; the cup was in the middle of the table, and for the life of me I couldn't figure out how to position the penny over it.
               
I must have looked so freaking ridiculous...I mean, who can't position a penny over a cup and oscillate it in a straight line?!
                
I was mortified.
                
"Don't apologize," my friend said. "It's no big deal."

I'm not going to say that her words made me get over all of my self-conscious feelings about my disability, because that would be a lie. There are times that I still feel uncomfortable about the situations that my CP gets me into, and I'm sure that will always be the case to some degree. But she's right—there's no need for me to feel embarrassed about what I'm not able to do. I'm guessing that's the first and only time I'll ever have to swing a penny over a plastic cup, and in the grand scheme of life, this is no big deal. After all, my lack of depth perception doesn't mean that I lack depth as a person.

I feel as though I'm coming to terms with my disability more and more as I get older, and I owe much of that to the blogosphere, to the people who have shown me that we are more than the sum of our challenges. Ultimately, I'm realizing that it's okay to ask for help, that I don't have to take on the world by myself. I still feel awkward asking, though—I can't help but think that I'm inconveniencing people. 

Do you guys ever feel that way when you ask for help? Do you ever find yourself embarrassed by situations caused by circumstances beyond your control? I'd love to hear what you think in the comments!

Wednesday, July 9, 2014

Not Alone


I wonder if we get to decide whether we want to be here. I heard someone speculate once that only the bravest souls are here, that most people decide to stay up in heaven and watch, as spectators to this crazy world of ours. (Not sure how true that is....sometimes I'm afraid to look out the window at night for fear that an ax-murderer will be staring back at me! ;-) )

I wonder if we know about the pain that we will inevitably encounter while we're here...if not our own pain, someone else's. 

I wonder if God, if there is someone "in charge," justifies it. "It won't be so bad because you won't be alone. You'll all be in this together."

Or maybe, like my mom believes, we experience pain in order to grow. Maybe everyone comes here with a challenge, or two, or sixty, or a million. 

My mom, who is a teacher in more than one sense of the word, told me a story a few weeks ago. She was making Mother's Day presents with her students when she noticed that one little girl, Abby, was sobbing. 

"I don't have a mom," she said.

My mom knelt by her desk. "I know," she said. "But you live with your grandmother, right? You can give her something for Mother's Day." Then she paused. "We all come here with challenges. My daughter has cerebral palsy, which means that she didn't get enough oxygen, and now it's hard for her to move her legs. She used to cry sometimes, too, because she wasn't able to do everything that the other kids could do, but I always told her that her disability was her challenge in life. And this is yours."

That's all it took for her tears to stop and a smile to spread across her face—a simple affirmation that she wasn't alone.  

Monday, June 16, 2014

In which I eat six pints of ice cream, do math for fun, and reunite with an inanimate object


Wow, it's been a while. I guess I kind of took an unannounced break from blogging. It's been such a relaxing month...At the end of the semester, I had $35 left to spend of campus center money, and it would have disappeared if I didn't use it....so I bought six pints of Ben and Jerry's and gave a seventh pint to the man who was working there. Probably the best use of $35 ever! 

I know I write a lot about disability here, but there's another side of my life too, a side that is remarkably ordinary! I tend not to write about it here because I don't know if anyone would care to read about it, but in case you're interested...

 I've had a lot of movie nights with my friends, and I rediscovered the magic of a library so I have been spending a ridiculous amount of time catching up on books. One of my friends has been begging me to read the Divergent series for a while, and I was a little hesitant because I don't usually read young adult novels, but I decided to give these books a try, and they've been taking over my life in the way that only a book can!

Along with reading, I've been doing some more writing! My writing professor extended the deadline for our essays, so I seized the opportunity to work on another one, and it's CP-related, so I'm toying with the idea of posting it here for you guys to read as well! 

I've been playing a lot of piano, too...I missed my piano at school, so it was an awesome reunion. I've resurrected a lot of my older pieces--pretty sure my family is tired of hearing Fur Elise, though they're too nice to admit it!

I've also started going to the gym again! Maybe that makes up for the six pints of ice cream...I've been so excited because my legs actually have been getting sore after my workouts!!! Most people probably wouldn't see this as a cause for celebration, but since I was a child, my therapists have been trying to get me to feel my legs after exercise...finallyfinallyfinally. I seriously almost cried!
And I've been tutoring like crazy—sometimes it seems like every weeknight! I was pleasantly surprised to find that I still remember most of eighth-grade math, even though I was homebound for most of eighth-grade.

Tutoring someone in math is one thing, but I seriously began to question my sanity when I found myself doing math for fun. I don't even like math, but one of my friends likes making secret codes for me to solve and she sent me one with math terms! I wasn't even going to do it, but my curiosity got the best of me, and I caved!
Somehow this was fun??

I also shadowed a school-based speech therapist and an occupational therapist the other day...what an awesome experience! I'm not sure what I want to do with my life yet, but I can definitely see myself working in one of those areas. I feel as though I understand a lot of those kids because I've dealt with a lot of challenges of my own! The kids were awesome...and I guess I attract the younger men ;-) because one of the kindergartners made me a painting and kept telling me that I was beautiful. Melted my heart! (:
The best cupcake on the face of the universe. 

Oh -- and I had the best cupcake on the face of the universe! I swear I eat more than just cupcakes and ice cream...I also started making some really good smoothies (strawberries, Greek yogurt, and oatmeal), but let's be honest..... they just don't compare to cupcakes and ice cream! I brought a cupcake home for my mom too, since we've unanimously agreed that they are the best cupcakes ever! I've included a picture for your viewing pleasure...mine was chocolate sea-salt caramel, and my friend's was banana Nutella!

That's it for now! I hope you didn't mind that this post was a little bit all over the place, and I can't wait to catch up on reading your blogs! I hope to post more regularly this summer because I've missed you guys! xoxo

Monday, May 19, 2014

NO, I'M NOT DRUNK. (Stop asking!)

The first time it happened, I laughed all the way to class.
I had just passed a stranger when she looked over her shoulder, and, being totally serious, she asked if I had been drinking.
I stared blankly at her, too surprised to speak.

First of all, who are you? And who gets drunk at 8:30 a.m. on a Monday morning? I kept walking.

For the sake of humanity, I'm certainly glad that she wasn't drunk, because I can't even begin to imagine what she's like with even fewer inhibitions.

When I got to class, I set my bag down next to one of my friends and recounted what had just happened.

"WHAT IS WRONG WITH HUMANITY?" she asked, and we laughed. Because it is funny.

Except when it isn't. Except when it hurts.

A few days after that happened, my college had its annual spring festival. I spent most of the day indoors because I had a huge test to study for, and loud music + crowds + alcohol isn't exactly my thing. Part of that is due to my cerebral palsy. Crowds make me nervous because even a small shove can send me to my knees, and as far as alcohol goes...well, I'll just quote my dad on this one: "Imagine what you'd be like if you were drunk." (Thanks, Dad.) I guess he sort of does have a point; I have enough problems staying upright when I'm sober that the thought of being intoxicated doesn't exactly appeal to me.

Anyway, I knew that the spring festival wasn't my thing because of the music and drunken crowds, but I couldn't shake the feeling that there was some other reason why I was dreading it so much.

As soon as I stepped outside to walk to dinner, I remembered.

The spring festival is like judgment day on steroids.

By the looks I got, you'd have thought I committed a crime. Nobody explicitly asked if I was drunk this time, but they didn't need to. The question was all over their faces. I saw it in the eyes of one of the dining hall staff members when she shook her head in dismay and refused to look at me. I saw it in the expressions of other students, who stared at my legs and immediately jumped to conclusions.

And my friends saw it too. One of them turned to me and whispered, "Now I see why you don't come to the festival."

I don't mean to complain but sometimes it's just hard. Sometimes it hurts to be pegged as irresponsible for something that isn't my fault. And to top it it all off, as I was walking back to my dorm (and trying to ignore the dirty looks as I crossed the street), I came across a poster that said:

"If you want to be successful, first you have to walk gracefully in heels!" 

I know it was meant to be lighthearted but I just couldn't deal with this day anymore. I don't need a pair of six-inch heels to feel fulfilled. I am going to be a walking contradiction to that poster, a walking contradiction to a world full of people who place so much emphasis on walking in a straight line and being graceful that they fail to live their own lives with grace and understanding.

Those drunken steps you see? Those are steps that my doctors warned my parents I might never take. I caught your eye as you watched my knees knock together; I heard your unspoken questions, saw the judgment in your expression. But before you judge, take a moment to walk in my shoes. I wish you could see the six-year-old me as I practiced walking up and down stairs with my wobbly legs, my knuckles white from gripping the railing. I wish you could see the eight-year-old me as I watched my reflection in a store window, painfully aware of my differences. I wish you could see the fourteen-year-old me as I sat in the doctors' office listening to my surgeon tell me that I would never walk independently again. 

I wish you could look at the shaky steps I take today and see what I see: success.

Thursday, April 24, 2014

Wrecked Shoes Made Me Smile

It's 7am and my alarm clock jolts me from my dreams. I open one eye and tell myself my daily lie: If you get up now, you can take a nap later! 

I don't even take naps, but somehow I believe that lie. Every. Single. Day. , the empty promise of a nap gets me out of bed in the morning. 

I sit up in bed and my eyes fall on the two posters in my dorm room. The first one says KEEP CALM AND CARRY ON. Facing that, on the opposite wall, is another one, a Christmas gift from my brother: NOW PANIC AND FREAK OUT.

That about sums up the past two weeks. Nothing major, no crazy health scares or anything, but academics were starting to explode my to-do list. Is that even a valid excuse? I should make more of an effort to keep up with my posts (I can't believe it's been almost two weeks! oops) but I guess I should also make more of an effort to clean my room, put away my laundry, make my bed, eat my vegetables, and go to bed at a normal hour.

Anywayyyy...here's a post for you guys. Would love to hear your thoughts so I know if anyone still comes here even after my two week epic-fail of no blog posts!

 ~

CP is such a visible, all-encompassing part of my life, but sometimes it hits me that if a stranger was to walk into my dorm room, they would find almost no evidence of the challenges I deal with every day. If they searched through my drawers, they'd find blister bandaids, athletic tape, and injury wraps, and they might actually assume I'm an athlete.

At least until they found my shoes.

Earlier in the year, I was talking to my mom on the phone when I paused for a moment, took a deep breath and said, "You know the new sneakers I got just before school started? I kind of wrecked them."

My right shoe, especially, was ruined. My right side is worse than my left, and my unusual gait pattern takes a toll on my footwear (and my feet, but that's a story for a different day!). They're worn down in all the wrong places.

My mom was silent for a moment, and then....

"Good!"

I waited to ensure I'd heard her correctly, shocked. "I don't think you heard me. I wrecked my shoes. Like wore-a-hole-into-them kind of wrecked."

"I heard you. Congratulations."

Thoroughly confused now, I checked my connection...maybe I was in a dead zone or something, and "I wrecked my shoes" was being transmitted as "I got an A+ on my chemistry exam" (which, for the record, is impossible).

"Mom," I said, slowly and clearly this time. "I wrecked my shoes. My new shoes."

"I know!" she said.
"And those doctors said you might never walk! You go girl!" 

Monday, April 7, 2014

Standing Alone: Going to College with CP

College Orientation was a nightmare.

I arrived on campus in August 2012 full of self-doubt, my stomach doing backflips. I had never been away from home for more than a few days at a time, and sleepovers with my friends didn't really count.

I knew nobody, and yet it seemed like everyone else had found a best friend within ten minutes of arrival.

It was easy to feel inadequate. We had to follow an orientation schedule designed specifically to help us feel more comfortable with our new surroundings, but I couldn't have felt any more alone.

First. Pavement everywhere. A nightmare for someone with CP. I was terrified that I was going to fall.

Second. Going from place to place was like a giant game of "Follow the Leader." Except the leader walked REALLY fast. Really, really fast. I felt like I had to jog to keep up, and yet even though I felt as though I was running, I was still much slower than everyone else.

At one point, I got caught in the middle of the group, and someone behind me piped up, "Why are we going so SLOW?"

I shut my eyes and willed myself to keep it together, but inside I was breaking.

Third. My sense of direction is pretty much non-existent. Despite my best efforts, I was occasionally unable to keep pace with the group, and then I would get lost. Let me tell you, friends...there's nothing quite like being literally lost and metaphorically lost at the same time.

Fourth. Dances. I looked at the Orientation program and saw that a dance was scheduled for 10pm. And next to the time was a word that made my heart sink: MANDATORY. The current-day me would have totally disregarded that damn word. I would have stayed in my room for those two hours and I would have watched a movie and stuffed my face with popcorn, secretly rejoicing over the fact that I was skipping the stupid "mandatory" dance.

Dances are a form of slow torture. My entire body aches and my legs seem to turn into wood planks because I'm deathly afraid of being trampled. And I can hardly hear anything over the earsplitting music. But I went anyway. I shouted a few introductions over the music, clung for dear life to the wall, and prayed to God that it would end.

Eventually I found a group of people who seemed almost as miserable as I was to be there. We looked at each other and it dawned on us that we could just go back to our dorms and nobody would care. So we did. (Best decision of Orientation so far)

The next night was "Group games" -- mandatory AGAIN. They brought us all out into a field and had us all sit down while they discussed the instructions. But I was distracted.

There was girl in the middle of the crowd with forearm crutches literally standing alone. I watched her for a minute as she stood there by herself, and I wondered if anyone would stand with her. No one did.

The metaphor struck me hard.

Rapidly losing faith in humanity, I got to my feet and stumbled my way over to her. I just couldn't let her stand there alone.

"It's too much effort to sit with my crutches," she explained, and I nodded. I understood. I had the very same crutches just a few years earlier.

"Well, I'll stand with you," I said, and together we towered over our classmates.

We were the only two people with visible disabilities, and we were the only people standing up in a crowd of more than 500 students. We stood out, quite literally, but for the first time all week, I didn't feel alone.

xxx

Friday, March 28, 2014

Humanity Leaves Me Breathless

Over my spring break, I went to a pulmonologist for my breathing issues, and I received some breathing tests.

For the first part, I had to breathe normally. For the second part, they made me breathe in methacholine. This is a chemical that people are sensitive to if they're asthmatic...so basically, it's supposed to make it hard to breathe. Does that sound scary to anyone else? Because it totally freaked me out!

"Hey, breathe in this chemical and hold your breath so that it penetrates deep into your lungs." !!!

The tester, a respiratory therapist, increased the dose of methacholine incrementally, and the first few doses were fine, but by the fourth or fifth one, my chest hurt and I was short of breath.

I sorta-kinda knew that I failed because she grabbed an inhaler and said, "I know that you're usually only supposed to take two puffs at a time. . . but I need you to take six."

So I've since been diagnosed with asthma. I'm on a stronger medicine now, so it hasn't been too bad. Except when people smoke in the hallways. Which I'm pretty sure is illegal.

I don't know which of my neighbors is the culprit but somebody is getting the hallway all smoky and then covering it up with perfume...both of which make it hard for me to breathe. This happened last night and I didn't even realize it -- my door was closed, and I didn't smell any smoke or perfume, but suddenly I felt like it was hard to breathe. One of my friends heard me coughing and texted me, "Use your inhaler and stay in your room" because she had ventured out earlier and realized.

It's just frustrating that I have to deal with breathing problems because a couple of people decide that they want to smoke indoors.

Otherwise, my life is going pretty well. I'm settling back into the routine of school after spring break, and I'm enjoying catching up with friends. My classes are interesting, too (except chemistry!).

And the majority of people on my campus are amazing individuals. The other day, I was having another episode of breathing trouble -- nothing too major, but I couldn't manage to shake off someone who was smoking behind me...no matter how many times I stopped and waited for him to pass, he seemed to be right behind me! Barely anyone on my campus smokes, but it seems like I attract them or something. Sigh...Anyway, it wasn't a huge deal, but I ducked inside of a campus building and sat on the steps to catch my breath, and a girl whom I barely know approached to ask if I was okay. Later, she sent me a message on Facebook to make sure that everything was fine.

This is is far from the first time that my breathing troubles have shown me the wonderful side of humanity. In fact, it's happened so often that I'll probably write a post about it when my to-do list isn't running off the page. :-) There are so many amazing people at my school.

I guess the bottom line is this: for better or for worse, humanity leaves me breathless!