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.


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 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 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!

Wednesday, March 26, 2014

When Unfair Becomes Dangerous

When we first met, she apologized for saying hello to me when I was in the presence of my other friends. I told her that she IS my friend, that she never has to apologize for saying hello.
Meanwhile, my heart was breaking.

Because we live in a world where people feel as though their disabilities make them inferior, unworthy of friendship, less of a human being.
Because I see the way that people avoid meeting her eyes when she looks at them.
Because one day, as I was walking back to my dorm after one of our conversations, I overheard her say, "Wow! Somebody actually acknowledged me!"

She has autism, but she is so, so much more than that. I just wish more people would take the time to talk to her. I won't share the details of her personal life on here, but I will say that she has a beautiful heart. She works at my dining hall, so I see her often, and she always greets me with hugs and smiles. Before I leave, she reminds me to be careful in the ice and the snow.

"You are a like a sister to me," she said. "I'll always look out for you."

I look out for her, too.

Recently, she came up to me with sadness in her eyes and said that she was scared for her health -- because she has asthma and she's not allowed to carry her inhaler with her. I asked her if she had easy access to one if there was ever an emergency, and she said no, that they don't even allow her to keep it in the vicinity of where she works. And then she said that she was upset because they [the people in charge?] accompany her to her doctors' appointments even when she feels uncomfortable with them listening in, that they don't give her time alone with the doctor to ask personal questions about her health.

"Speak up for yourself," I said, "because that's not right at all. For your own safety, you should always have access to an inhaler if you need it, and you should be able to feel comfortable asking your doctor questions."

I don't know all of the details of the situation, but it seems to me that she's being taken advantage of. Maybe the people in charge are simply ignorant, or maybe they think that because she has autism, she won't voice her concerns. I told her that she needs to talk to them about these situations, and if they don't listen, to mention her concerns to both her mom and her doctor. I realize that maybe she's not allowed to administer her own medicine, but the people in charge of taking care of her should at least have an inhaler on hand if it's documented that she has asthma.

I don't know about the logistics, but I do know this: she shouldn't be fearing for her life.  

Monday, March 17, 2014

Still here!

I can't believe that it's been almost a month since I've last written.

I guess that's not exactly true . . . I have written. Light-hearted letters to friends with inside jokes in the margins, script alternating between loopy print and scrawling cursive and peppered with hearts and smiley faces. Essays about my life for my narrative nonfiction class filled with heaviness and sealed with tears, typed out in stretches of double-spaced sentences, proof that Word documents can contain parts of your soul.

You know when you're walking with a heavy backpack and it weighs you down and makes your back ache and slows your steps? And then you swing it off your shoulders and suddenly the heaviness has disappeared and you feel as though your heart is feather-light? That's how I feel when I write, when I let the words spill out onto a page.

  And yet, when I've spent hours typing into a Word document for my writing class, it's almost as if I'm afraid to come to my blog and write more, because if I take that backpack off too suddenly, I might just fly away from all of the lightness. ;-) Sometimes I feel as though the words that I don't feel obligated to share serve to keep me grounded . . .

Lately some of my friends from outside my writing class have been asking to see my pieces, and I'm not sure what to do. A lot of my writing is about my disability (though not all of it) and I almost never discuss my CP in spoken words, so it feels strange to share this side of me. And then there's a part of me that's afraid it will change things, change the lightness of our friendships. Sometimes when I tell people my story, they look at me differently. I can see it in their eyes and I'm not quite sure what it is, exactly, but suddenly I'm no longer a college kid. And then part of me wonders if I'm being selfish by not letting them see this part of me.

It's hard to share. I need to share. There's something beautiful about sharing words with someone else, and yet there's something equally wonderful about holding those words close to your heart, tucking them inside of yourself.

Anyway, I guess that's enough rambling for now. I miss you guys and I really felt as though I needed to write something here today. xoxoxo

Monday, February 24, 2014

Deafening Whispers: The Moments that Stay

"You can't play with us," they said, "because you can't jump. Only people who can jump can play hopscotch."

"Cripple," she murmured under her breath, her voice dripping with malice.

"WHY. ARE. YOU. SO. SLOW?" she screamed in my face, each measured syllable like a knife.

"What's wrong with you?"

"You walk like a drunk person."

"Maybe God is punishing you for something."

"If you went to the gym more often, you'd be just like everyone else."
"Such a shame, such a shame..."

I never knew that whispers could be so loud, never knew that single moments could stick with us for a lifetime.  

But for every comment and action that sent me to my knees, there were many others that helped me up again...

The students in my fourth-grade class who took my hand and showed me that even if I can't jump, I can still jump rope. 

The boys and girls in my karate class who rooted for me as I stumbled through the obstacle course.

My entire fifth-grade class, whose cheers and congratulations filled my ears when I scored a point in our Friday afternoon kickball game. 

My best friend in elementary school, who helped me up and walked me to the nurse each time I fell, and who accompanied me outside of gym class whenever I couldn't participate. 

My middle-school friends, who threw me a surprise party for my fourteenth birthday when I was home-bound after my accident.

My five-year-old, soft-spoken brother, who hurried to my side and stood up for me when he heard the piercing words directed towards me in the kindergarten bus line. 

My amazing girlfriends, who waited for me as we waded through a thunderstorm. 

One of my college friends, who wrote on my whiteboard:
"You are an amazing person in every way."
and another, who wrote me a letter that said at the bottom:
"You are perfect just as you are, so don't ever stop being you... ever!"

If you're reading this post, I only ask that you take a few extra moments to consider your words and actions. Because those that hurt can create permanent scars...and those that help can give us strength that sustains us for decades.

If it hadn't been for the others, then perhaps I would have gone through my life thinking that that we live in a world where only those who can jump can play hopscotch. Perhaps I would have believed that we live in a world where I was defective and worthless and broken, and worse still, that I was being punished by God ever since I was a baby for a deed that I couldn't remember committing. Perhaps I would have viewed my disability as something that was my own fault, as something that I could wipe away if only I was a little more driven and a little more worthy. Perhaps I would have considered my own life to be something to be ashamed of, a mistake, a burden.

Thank God for the others.

I never knew that whispers could be so loud, never knew that single moments could stick with us for a lifetime. 

Saturday, February 15, 2014

Ignorance that Leaves Me Speechless

The other day, one of my college "friends" asked me if I could come to one of her events. We just had a snowstorm, so I mentioned that while I would like to go, I was nervous about safely walking through the snow and ice.

"Well," she said, "I think you need to stop being so worried about snow and ice. I walk in the snow and ice all the time and I'm fine, and I walk a lot farther than you do."

Um. WTF?!

I took a few moments of silence to recover, and then I said, "I don't think you understand."

I explained, briefly, about how if I fall and get hurt, it's not like I can just use crutches for a few weeks and then be all better. A bad fall could set me back for a lifetime. I told her that, years ago, I fell and broke my leg in a bad spot and I had to get emergency surgery and withdraw from school. I explained that my surgeon didn't think I'd ever be able to get rid of my crutches after that, and that six years later, I'm still recovering from that injury.

And then she looked at me and she saidI kid you not"Yeah, it was tough when I broke my foot. Sometimes I can't run as fast because of it. But you won't fall again. You should come to my event!"

I can't make this stuff up. She fractured her foot in October of 2012a year and a half agoand our situations are nowhere near the same. Sure, she wore a cast for a few weeks and I bet it was annoying. She couldn't run on the cross-country team while it healed. But there was never any doubt that it would heal, never any doubt that she would walk again. She didn't have to get emergency surgery and she could still go to school without worrying about her leg imploding. And it's hard for me to sympathize with the fact that "sometimes she can't run as fast," because I can't run AT ALL.

Sometimes I just want to shut my eyes and bury my head in a pillow and try to forget about all of the ignorance in the world. It's almost as if she's trying to make me feel bad for having a disability, and it seems that she's always trying to equate her own experiences with mine. I love when people can really and truly empathize, but having a broken foot for a few weeks is NOTHING like having a lifelong disability, and yet it seems as though she always tries to make it seem as though I'm being melodramatic.

As I'm writing this post, I'm trying not to let myself get upset, but for the love of all that's good in the world, sometimes it's so freaking hard NOT to get upset. Sometimes I want to sit in the corner of my room and put my head in between my knees and cry until I'm all out of tears. Because sometimes life's just hard. And I know that struggle is part of being human. I know that even the girl I'm discussing here has experienced that.

But somehow everything seems so much harder when someone dismisses your struggles. She thinks she knows what it's like to walk in my shoes, and yet she's never been told that she'll never walk again. She's never listened to her brother break down and sob next to her hospital bed as she wished with all her might that she could take the hurt away. She's never laid in an emergency room and seen the panic on a surgeon's face as he realized that immediate surgery was needed. She thinks she understands, but she doesn't. Not at all.

She always seems to be trying to convince me that her fractured foot was so much worse than anything I've ever been through. The more I think about this, the less sense it makes.

There is no way she could walk a mile in my shoes . . . especially if it was icy outside.

Saturday, February 8, 2014

ANOTHER Friday Night in the ER

I swear this isn't how I like to spend my Friday nights, but it happened AGAIN last night. This post is kind of stream-of-consciousness, so apologies if my writing isn't up to par! I'm sorry if you're sick of reading about my breathing stuff -- I'm sick of it too, but it's just been such a major part of my life for the past few months...feel free to skip right over this post if you wish!

Anyway, right before dinner on Friday evening, I started coughing and it wasn't bad enough to use my inhaler, but my neighbor was worried because it was like 25 minutes of straight coughing.

It seemed to sort of resolve itself a little on its own, but halfway through dinner, it got worse again and I was wheezing, coughing, and feeling kind of dizzy. I don't like to cause a scene, so I just sort of withdrew from conversation and put my head between my knees in the hopes that it would resolve itself until I could get back to my room to use my inhaler.

I wasn't really listening to the conversations going on around me, just trying to focus on breathing, but apparently my friends were getting worried, and one of them grabbed my key and went to my room to look for my inhaler. She couldn't find it since it turns out I had put it in my coat pocket (I usually put it in my backpack). At this point, a couple of my friends wanted to call campus safety for me because my breathing just sounded whistly and choked up and just...not so good, but I ended up going back to my room and using my inhaler.

It seemed to work for a little while, but then the wheezing and the coughing came back with a vengeance! My chest was tight and painful, and I could inhale fairly well, but exhaling took a crazy amount of effort. I just felt like I couldn't get the air out.

I went to sit in the lobby outside my dorm because sometimes that seems to help (a lot of times, the hallway outside my room is full of smoke or perfume and that always exacerbates things!). A friend sat with me and we talked for a while and I used my inhaler over and over and over again...eventually things seemed to get a little better again -- not 100 percent, but I felt as though I could breathe okay.

I went back to my room to study for my chemistry exam (which is on Monday) and after about twenty minutes or so, I felt as though I was suffocating again. It was such an awful feeling, like drowning without water, and the inhaler wasn't helping as much as it usually does; it definitely helped, but breathing still felt like work.

I wanted to see if it could get better on its own, so I went back to the hallway to sit for a while. After about an hour, things still weren't improving, and two of my friends happened to pass by. They sat with me for a while while I tried to breathe and eventually we decided that maybe it was time to call campus safety.

An officer came, and he happened to have asthma, so he took one look at me and said that I needed to go to the ER because my wheezing was awful and it was clear that breathing was taking more and more effort as time went by.

It was MIDNIGHT at this point...and I just want to take a moment to be grateful for my amazing friends; they both came with me even though I said that I didn't mind going alone, and they sat with me in that emergency room for THREE HOURS. We didn't get back until after 3 AM. The ER trip wasn't fun by any stretch of the imagination, but they made it not so bad by cracking jokes to make me laugh and discussing life and taking my mind off the fact that I couldn't breathe very well.

Anyway, it was a lot of waiting around (I spent about an hour just lying there while my symptoms got worse!), but eventually the doctor listened to my lungs and gave me a nebulizer treatment because it sounded like an asthma attack. The nebulizer worked like a charm. He explained that sometimes with asthma attacks, the inhaler seems to work at first to a limited extent, and then things get worse again, which is what happened to me. Being able to breathe smoothly again felt like the best feeling in the world!

I got some MORE medicine to take on a daily basis because he said that the medicine I'm on now isn't strong enough to combat all of the triggers I'm encountering at school (cold air, secondhand smoke, etc.), and he listened to my lungs after the treatment and said that they sounded much better, so I was free to go.

It wasn't exactly how I envisioned spending a Friday night, and I'm hoping that I never have to visit the ER for this kind of emergency again (isn't twice enough?). The doctor said that the stronger medicine in combination with the Singulair should get rid of my symptoms to a point where my asthma (or, I guess it's still "suspected asthma" at this point, but he called it asthma) is under control. Fingers crossed that he's right because my chemistry exam is enough to deal with at this point without adding in breathing issues! (And yes, for those of you who were wondering: I did tell my mom! ;-) )