Tuesday, June 25, 2013

Waiting in a Thunderstorm

Last night, I went out for dinner and shopping with a couple of friends. I'm really enjoying my summer so far, and last night in particular reminded me that I have truly amazing friends.

After we left one store, it started to torrential downpour. I now know where the term "buckets of rain" comes from. We stood under the shelter of an awning, watching the rain fall and trying to wish it away. Maybe if we stare at it long enough, we thought, it will just disappear. That didn't work. If anything, it seemed that the rain fell even harder.

Eventually, we decided we should just go for it, so we counted to three and ran as fast as we could to the safety of the car.

Except I can't run. Even my fast walk is slower than the pace of an average individual. But that didn't matter to my friends. We walked alongside each other, laughing as raindrops pelted our faces, clouded our vision, and fell with such force that they made our skin tingle.

And when my friends got to the car and I was still a few steps behind them, they waited. They stood outside in the middle of a thunderstorm to wait for me.

As I reviewed my post from last week and read over the comments that I received, I realize that the girl who left me in the dust, the girl who made assumptions about me, the girl who laughed at the way I walked — she is not a true friend. 

True friends will wait for you, even in the middle of a thunderstorm.

Monday, June 17, 2013

Forgiving Ignorance?

We are walking back to our dorms together, not quite side-by-side. She takes quick steps, and I am a few paces behind her.

"You don't have to wait for me," I say, slightly breathless from trying to keep up. Maybe it's not quite fair, but when she replies, "Okay, see you later," and leaves me in the dust, there's a part of me that thinks she's not a real friend. You see, my best friends understand the distinction...they don't have to wait for me, but they wait anyway. They wait because they want to.

I stop for a moment, watch as she disappears in the distance, and I know she doesn't understand.

~

Then, about a month later, she breaks her leg. I truly feel bad for her; I do whatever I can to make her life easier, because I know how it feels to deal with a disability. I carry a cooler full of ice to her room for her, deliver heavy packages to her room; I even slow my pace when we head back from class so she won't have to walk alone.

But then, after her cast comes off and her leg heals, I sprain my foot. I limp off to class and slump into a chair.

"How has your day been so far?" she asks.

"Not so great, actually," I say. "I think I sprained my foot because I barely made it here!"

"You don't have a right to complain," she replies. "I broke my leg."

I hold my tongue, but my insides burn with fire. It takes all of my self-restraint to keep from dumping my life story on her. I could tell her about my cerebral palsy, a lifelong condition that can't be cured with a cast and crutches. I could tell her about the surgeries and the hours I spent at PT. I could tell her about the time I broke my leg, about the emergency surgery, about the three months I spent in a wheelchair and the years after that I spent trying to regain my strength. I could tell her that I was warned by doctors and therapists, not once, but twice, that I might never walk independently.

I could, but I don't. Instead, I swallow my words and stare at the wall so intently that I wonder if my eyes will burn a hole into it.

The second time I bring up my sprained foot, she says something similar, and this time, I allude to the difficulties I have endured in the past. She apologizes, sort of, but I see it in her eyes that she still doesn't understand.
~

"You don't know how lucky you are," she says. "It's been a few months since I broke my leg, but I still can only run a mile!"

I'm not sure whether I should laugh or get up and leave the table.
I can't run at all.

~


We're eating lunch together when she says something to the effect of, "If I was so-and-so [another student with CP who is awesome!], I wouldn't get so many rides from campus safety!"

I set down my fork, stare.

Are you for real? I want to say.

Instead, I force a smile -- which is probably more than she deserves --  and say something like, "Some of us don't have the luxury of making that choice. You're only seeing the situation from your perspective." If she could walk to class, don't you think she would?

~

I look down, see that my phone is buzzing. A text. From her. Somehow I can't bring myself to respond to her message, a simple How is your summer?

Because I am tired. I don't want to deal with her anymore. I don't want to try to make her understand anymore. But then there's that little voice in my head that says, "Doesn't she at least deserve a reply?"

So for now, it sits in my inbox. I'm not sure what to do. There's a part of me that wants to forgive her ignorance, because I know she's a good person at heart and maybe she simply doesn't realize that she's being insensitive. And yet, at the same time, I don't really feel like giving her any more chances. There's a part of me that wishes I could leave her in the dust like she left me so many months ago.

Monday, June 10, 2013

On Talking About My Past

I learned how to write when I was about five years old, and I haven't stopped since. Even as a first grader, I would retreat to my room after school with a pencil and a stack of paper. Most of the time, my words were cheerful, imaginative, lighthearted. Other times, however, I would sit at my desk and let my pain spill out onto the page. Writing became my confidant; I used words to express thoughts that I couldn't say out loud.

I found one page in a journal I kept when I was in second grade. In frustration I had scribbled over the words, but I could just make out the sentences, riddled with pain.

"There is something wrong with my legs, but not my brothers legs. I wish there wasnt. Sometimes I feel sad."


For seventeen years, I talked about my CP with literally nobody. That is, until I was required to submit my college entrance essay to my English teacher. What's more, we were expected to share it with our classmates.

My heart sunk. I had something written, but it was soul-achingly personal, painfully deep. I spoke to my teacher about my reservations, and she told me that I didn't have to read my essay to my peers.

Yet, the night before the essay was due, I sat in front of my computer screen in tears. I didn't want to share my words with anybody, not even my teacher. I tried to write a new essay about something trivial, but the words wouldn't come. In resignation, I hit the "Print" button, turned off the computer before I could change my mind, and climbed into bed.

The essay was returned to me a few days later with no edits; my teacher said that it moved her to tears and gave her chills.

I was encouraged by her comments, but I was still uncomfortable sharing details about my life with others, even my friends.

~

One evening, I was eating dinner with my best friend from college, and she asked me what I wrote about for my college entrance essay, that same essay that I struggled to submit to my senior year English teacher.

The question caught me totally off-guard. I was silent for a moment; then, "My life."

For many people my age, that question is innocent and simple. Perhaps they wrote about a family vacation gone wrong, their favorite hobby, or a track race that inspired them. But for me, that question was deeply personal, difficult to put into words. How could I sum up an essay that, in essence, is the core of an entire blog?

So in some ways, my answer was honest. My essay really was about my life, about how my disability has impacted everything I do. But in other ways, my reply was a cop-out, something I felt guilty about later. When she asked that question, we had only known each other for a few months, but was it fair to give her such a vague response, to offer her such little insight into my past? Didn't she deserve to know more, to see how I became the person I am today?

I knew she did, but I just couldn't. I couldn't share.

When I do have to allude to my CP, I make light of it in order to put people at ease. Once, one of my high school teachers asked me why I used crutches. I told her that I broke my leg because I didn't want her to pity me. This was true; I did break my leg, but it was only half of the truth. Another time, when I was being interviewed for a newspaper article, I told the reporter that my CP doesn't really affect my life. When I trip over nothing, I often laugh it off, saying, "I just wanted to make sure the floor was clean!" And when I am asked to do something that I know I am physically unable to do, I smile and say, "I'd better not do that because I have a feeling that it wouldn't turn out well, and I'm too young to die!"

~

One of my classes last semester required us to respond to the readings by drawing upon personal experiences. Many times, I wrote about my disability and explained how it has brought depth and understanding to my life.

My professor read my pieces and said, "Your writing is so profound; why don't you share more in class?"

The margins of my essays were peppered with, "SHARE, SHARE, SHARE!"

And sometimes I did, but other times I couldn't bring myself to speak about my personal experiences in front of twenty people I didn't know very well.

You might think that's silly; how can you write a blog, you might say, if you can't share in front of twenty people your own age? But it's different...I feel that the majority of my blogging audience comes from a similar place.

My blogging audience, for the most part, understands me. The outside world? Not so much.

Somehow as soon as I try to speak with any depth about my personal experiences, the words get caught in my throat and I find myself reaching for a pencil.

Because writing is there to explain what my voice cannot.

Thursday, June 6, 2013

Words That Hurt

"If you went to the gym more often, you'd be just like everyone else."
 
His words stung like acid on my skin, echoing in my mind long after they were said.

It seems so characteristically teenager-ish to say, "You don't understand!" but that's what I wanted to tell him.

You don't know what it's like to battle muscles that tense even when you want them to relax.

You don't know what it's like to try to move when your whole body locks up, leaving you rooted to the spot.


You don't know what it's like to deal with spasms and shakes, to work with a body that receives mixed up messages.


Truthfully, I should go to the gym more often. My life has been so busy lately that it's hard to find time to go, but I will make time. I know how important it is to stretch and exercise, and his words play on some of my insecurities. They make me feel guilty. I work so hard and have exceeded so many expectations, but what if I did more? How would my life be different?

With that said, I know that exercise will not take away my CP. No amount of exercise will make me "just like everyone else." CP is not something that I can control, it's not something that I will grow out of, and it's not something that can be cured.

Still, his words hurt. I wish that somehow I could make the whole world understand.