Wednesday, October 29, 2014

Dear Readers,

October 25th was the two-year anniversary of my blog.

Sometimes I think back to the second-grader who scribbled about cerebral palsy in the pages of her diary, only to tear the pages out and rip them into a million little pieces....and I realize just how far I've come.

Three years ago, if you were to tell me that I'd start a blog about CP, I probably would have laughed. My disability was never mentioned in any of my writing assignments or reflections, and I went out of my way to avoid bringing it up.

This blog has helped me integrate it as part of who I am...and I don't mean that I've let it define me; rather, I've come to realize that this "brokenness" in my life has shaped me as a person in amazing ways.

Much of that is because of you. To those of you who leave comments: I cannot thank you enough. I have an amazing support system of family and non-blogger friends, but there's just a level of understanding within the blogosphere that words couldn't possibly convey .Thank you for being there for me when I sat at my computer in tears, feeling hopeless and lost and alone. Thank you for showing me that I was not -- that I am not -- alone at all. Thank you for your words of encouragement...for bringing me laughter when I needed a smile...for rejoicing with me and for offering advice and for reaching out to tell me when my writing has impacted you.

And even if you don't comment (which is fine! but I'd absolutely love to hear from you! :) ), thank you for being here, for reading this, even when I don't always post as often as I should.

I don't know what I expected when I started blogging, but never in a million years did I expect to find this...never did I expect to find you, this incredible community of support.  

Thank you for being my people.

Thursday, October 23, 2014

Somebody please explain Halloween costumes to me....

I miss the days when people would actually wear clothes on Halloween. Can somebody please explain to me why so many college-aged girls feel the need to walk around in public in 35-degree weather wearing nothing but a bikini? Are guys supposed to be "into that?" I guess a lot of them are, but I wouldn't want to attract that kind of person.

I think there's a lot to be said for modesty. Girls can still be beautiful without showing off their bodies. I'm not saying that people need to go out on Halloween wearing turtlenecks, but I miss the days when cat costumes actually resembled a cat and not a lingerie set. What kind of message are we sending people when so many of the Halloween costumes for teenagers and young adults are labeled as "sexy?"

As for me? Personally, I'm not going to dress up for Halloween at all because I don't believe in fun I have plans to put on my reindeer pajamas and watch Christmas movies with a friend.  Yes -- I'm one of those people -- the end of Halloween means that we've only got about a month until Thanksgiving, and Thanksgiving means that we've only got about a month until CHRISTMAS.

Monday, October 20, 2014


Sometimes I just have to laugh about the absurdity of my life.

I've been almost nonstop sick since the beginning of September. It started with the smoke in my dorm that was making it hard for me to seems like that's come to an end for now. But a week or so after that ended, I came down with a cold that went to my chest. And then -- two days after I got over that cold, I kid you not, I came down with yet another cold.

This cold has been pretty rough. A few days into it, I completely lost my voice. When my voice came back, I lost my hearing in one of my ears (it's coming back though, finally!).

I'm sure a lot of you guys can relate to this, but losing my voice was an eye-opening experience. I didn't realize how much I take speaking for granted until I wasn't able to do it.

Most people were extremely understanding...others, not so much. My chemistry recitation professor (side note: he's English, you guys, so he says things like "trolley" instead of "cart" and "marks" instead of "grade") -- well, he fell into the "not so much" category. In recitation, we have to answer questions in front of the class, and when I could barely whisper the answer, he leaned forward.

"Speak up," he said. "Can't you speak?"

Honestly? Not really. I tried again.

"I can't HEAR you. You're going to have to yell," he said.

I tried to explain about my voice, but it was no use. So I gave up. I fell silent. He turned away.

I'm not blaming my professor; he's usually a nice guy, and I'm sure he just didn't realize that I couldn't speak.

But that got me thinking about people for whom this isn't temporary. What about people with disabilities that make it difficult for them to articulate their thoughts? How many of them give up because other people turn away? How many of them cannot share their thoughts with the world because the world is unable -- or unwilling -- to slow down, to understand, to listen?

My voice came back, but some people always need to speak in different ways.  It might take an extra moment, a little more effort and concentration to understand them, but that doesn't make their words invalid; that doesn't mean that they're not worth hearing.

So here's my PSA to the world: SLOW DOWN AND LISTEN.

Tuesday, October 7, 2014

Step Aside...Or Not?

This morning, I read a beautiful post by Ellen over at LoveThatMax in which she outlined the various forms of confidence that she wishes for her son to have in himself.

I loved the whole thing, and her words stuck with me all morning. But there was one point in particular that I couldn't shake: "I want him to feel confident about moving at his pace," she wrote.

This is still a struggle for me. Every morning to get to my chemistry class, we have to descend a couple flights of stairs. Almost automatically, if I hear someone behind me, my legs stiffen up and I feel pressured to move more quickly...paradoxically, making an effort to move quickly worsens my spasticity and increases the likelihood that I'll stumble. And the whole time, I can't stop that little voice in the back of my head: "You're making them late...they're probably so annoyed with you right now...hurry, hurry hurry!"

If I can, I almost always step to the side to allow them to pass instead of making them follow behind at my slower pace. Usually people thank me, but the reactions vary...some people seem as though they feel awkward about it, murmuring a quiet "Excuse me!" as they move past. Recently, one girl passed me but then waited at the bottom of the stairs. "You didn't have to do that, you know," she said with a smile as I finished climbing the steps. "People don't mind waiting an extra minute."

Her gentle comment brought a smile to my face and certainly made me wonder. How much do people really mind?

I hear it all the time...Offhanded, innocent comments that even I can relate to sometimes, like, "I got stuck behind a slow person on my way to class, and it was so annoying because I was running late!"

Sometimes comments like these just roll right off me...after all, I get it. We live in a fast-paced world, and we've all experienced the pressure of being six minutes late to an appointment and seemingly hitting every. possible. roadblock. And yet, there are other times when I can't deny that it hurts.

During my freshman orientation, when I got stuck in the middle of the group and someone shouted, "Why are we going so SLOW?," it stung. Because to me, it didn't feel like "slow" at all...I was walking as fast as I possibly could, and I was painfully aware that even my best wasn't good enough.

Or when I expressed worries about not being able to keep up with a large group of people on a tour, and someone in my family said that if I went to the gym more often, I'd be just like everyone else. Those words still haunt me, especially because they came from someone I trust. They made me feel as if my CP and my slow pace were entirely my fault.

And yet, I know deep down that it's not my fault. Ever since I was a young child, I knew that it wasn't. For as long as I can remember, I've heard people huff impatiently as they waited for an older person to cross the street or get out of their way. I remember being a young kid and feeling a strange connection with these older people, and I always used to remind my family and friends that it was beyond these people's control, that it might be a small annoyance for you, but imagine how much more difficult it must be for them.

"You're right," my family and friends said. "I'm sorry." They seemed to understand that I was speaking from experience, that I knew firsthand the pain of being the "slow" person, the target of those impatient sighs.

Sometimes these sighs come before people realize that I have a disability. "What's taking so long?" they'll say as I take an extra moment to move. And then they'll notice my obvious disability and horrified comprehension will dawn on their faces. "I'm sorry...I didn't mean...." and their voices will trail off as we both try to pretend that nothing happened.

I guess my emotions are complicated when it comes to this topic. As of now, I think I'm still going to step aside on the stairs to allow people to pass me, but I'd love to hear other people's opinions. I'd love to become more comfortable about my walking pace, and more and more I'm realizing that it might not be as much of an inconvenience for others as I make it out to be -- several of my friends often ask to walk to class with me, sometimes even in the rain, and it never ceases to amaze me. And yet, when I tell them that they can go ahead without me, that they don't have to wait, they seem to regard me with amused confusion. "Why would I go without you?" they say.

Just the other day, I had swung my backpack over my shoulder and was heading out the door, when I heard a voice call out behind me.

"Hey, wait up! I want to walk with you."

I couldn't help but smile.