Monday, January 12, 2015

Twenty-One

Once, when I was little and my mom was worrying over me, I said to her, "Don't worry, Mom. I'm not going to die until I'm twenty-three." The younger version of me thought this would be reassuring...twenty-three seemed so distant at the time, light-years away, so old! But my mom ducked out of the room and didn't come back for a very long time. And then when she did come back, she just stood there and watched me in silence, taking in every inch of me with her eyes.

In just a little over a week I'm going to be twenty-one years old, and goodness, I hope that younger version of me was wrong because I'm not nearly done with everything I want to do in this world! In some ways I feel like I can't possibly be twenty-one years old...when I close my eyes, sometimes I'm still that six-year-old girl with a red-checkered dress, perched on my dad's shoulders, exhilarated at being up so high and wondering if this is how it feels to be a grown-up.

And then in other ways, I feel so much older than twenty-one. I was conversing with my mom the other day and she paused suddenly, kind of looked at me funny, and then said, "Sometimes I have to remind myself that you're my daughter, not my sister."

Our cake :)
I don't know if my CP is part of it or if it's just how I would have been no matter what my circumstances were, but I've always connected more to people older than me. When I was little, I'd go over friends' houses for playdates and we'd play dolls and traipse through the house in princess dresses and plastic pearls and boas, and it was great fun-- but after a few hours, I'd make my way over the adults and join their conversation.

Last night, we had our birthday celebration, because we'll all be back at college on the day of our actual birthday...we went out to dinner and then my parents arranged twenty-one candles on our cake (chocolate cake, coffee frosting, and toffee candy spread throughout! amazing.). They proceeded to debate the order in which to sing Happy Birthday (only in my family!), and they settled on birth-order. So they lit the candles three times--first for my oldest brother, then for my second oldest, and then for me. I would tell you what I wished for, but then it might not come true! ;)

I have to tutor soon, so I'm going to end this post here for now, but it's been a wonderfully restful break so far. Besides tutoring, I've been doing a ton of reading (anyone read The Help? I'm almost done with it and I can't believe I haven't gotten around to reading it until now! I'm also reading Into Thin Air about a guy who climbed Mt. Everest and a biography on Helen Keller), some Netflixing (yes, I just made that into a verb! I've been watching House and Breaking Bad), and lots of catching up with friends!  


That's it for now! xo


Monday, December 29, 2014

Not Crying Over Spilled Ice Water



This is your challenge, my mom always used to say. Every now and again, when my legs collapse from under me or I find myself reaching down to rub the stiffness from my knees, her words echo in my head. And sometimes they help. But sometimes? Sometimes I wonder why my challenge seems so damn difficult when there are others whose challenges seem so simple in comparison. 

And I know – I know that not everything is as it appears on the surface, that maybe their perfect lives and first world problems are complicated in ways that I could never understand. But sometimes, sometimes it still hurts. Like on December 6th, the seventh anniversary of one of the most difficult days of my life, when the girl in front of me at the water dispenser stuck out her elbow and backed up, sending me crashing to the floor. I dropped my cup full of ice water and I could feel my face burning as people formed a circle, staring. One of the dining hall staff members handed me another cup of water, and I forced a smile, but somehow this falling thing never gets any easier. 

She barely even pushed you, I scolded myself as I walked over to the table where my friends were sitting.

And then it hit me. I was still walking. When I stood up, my leg didn't give out on me like it did seven years ago on this day. I didn't have to leave in a wheelchair or be rushed to the hospital in an ambulance, didn't have to stare at the ceiling of the emergency room as a flood of doctors tried to stop my hand from spurting blood after a botched IV, didn't have to undergo emergency surgery or years of rehabilitation and tears and self-doubt.  
No. Not this time. This time, I was lucky. 

I set down my cup of water and laughed at a joke that I didn't even hear because I was too busy counting my blessings, overcome with gratitude that I had fallen yet again, just as I had fallen seven years before, but this time...this time, it was different. 

This is my challenge. To be sure, it's not always easy. Sometimes it knocks me down. But one thing's for sure: it has made me grateful for the times when I can get up again, grateful for those moments in life when falling isn't so complicated, when it isn't so costly, when I only spill a cup of ice water and some dignity. 

~
I took a bit of an unintended hiatus!! I had a dream last night that I was updating my blog and that's when I realized that I've really been slacking lately in this department. I definitely plan on updating more often, and thank you, thank you, thank you if you've still come back to read my blog after I went more than a MONTH without posting anything! It was a tough semester, but the past couple of weeks have been amazing... filled with family, friends, cookie swaps, gingerbread-decorating contests, Ben & Jerry's ice cream (if you know me, you know that's my weakness!!!), fuzzy socks (another one of my weaknesses), wonderfully unproductive pastimes like watching cat videos on YouTube in my pajamas, audiobooks (my dad's weakness...and luckily for my brothers and me, the audiobook he chose this time wasn't about the financial and political state of Iceland.....), and fluffy little faces like this one asking for late-night snuggles:
xoxoxo Thanks for reading, as always.

Friday, November 21, 2014

Shoes and NMDA receptors (don't ask, I don't know) and downpours and evil radiators

Halfway through my biopsychology class, at 8:30 pm on a Wednesday night, I looked down at my shoes and I started to laugh. Somehow, I had managed to go the whole entire day wearing my sneakers on the wrong feet. How does that even happen??? I swear I made it into college legitimately......

Normally I can stay engaged with my lectures for a while without getting distracted, but at this point, the professor was talking about something...learning and memory and NMDA receptors and AMPA channels and he might as well have been speaking Finnish because I was just so. done. He is incapable of speaking above a whisper, so he wears a microphone that works pretty well to bring his voice to an audible level, except that whenever he laughs, it BOOMS. So I was sitting there, still wondering how I managed to wear my shoes on the wrong feet all day, tuning in every now and then to hear phrases like, "So remember, only that which your brain deems to be rewarding or otherwise significant will make it into your memory...and you have to be paying attention for information to make it into your conscious memory" (oops...at least now I'll know why I won't remember the second half of this lecture when I'm studying for the exam.....) and every now and then, he'd laugh and I'd jump out of my skin and be jolted back to the lecture for 0.86 seconds.

I feel bad for having not posted in a while -- and I have a bunch of things that I want to talk about -- but I've just been so busy that I can't even get my thoughts in order.

Earlier in the week, I was conducting a research study on auditory distraction; all of the participants were administered a proofreading task, but in some of the conditions, I had scheduled my cell phone to go off in order to see whether the noise would affect their abilities to perform the task. As I was walking to the building where I was holding the study, it started to torrential downpour. I can't exactly run, so by the time I arrived (~15 minutes later), I looked like I had just jumped into a swimming pool. Then, halfway through one of my sessions, I had to pick up everything and switch rooms because there was an unannounced class that was going to be happening in that room in two minutes. So I managed to find a new room -- nearly tripping over my own feet and falling flat on my face about five times in the process -- and I got settled and began another session, this time with the control group. The control group was supposed to have complete silence while they were working -- no auditory distractions at all -- but of course, the radiators picked this moment in time to be as LOUD AS THEY POSSIBLY COULD BE, thereby kinda sorta ruining my study.

I couldn't help but laugh; to be sure, I care a lot about my schoolwork, but my CP has shown me that there's a lot in life that we can't control, and we can either get upset about it or we can laugh it off. :)

I have a crazy amount of work to do, and probably will continue to be ridiculously busy until Christmas break, but there was one bright spot at the end of the week...yesterday at dinner, I opened a fortune cookie to find this:
Just what I needed to hear. :)

Friday, November 7, 2014

Advice please? What to do when you can't understand someone with speech difficulties

Earlier today, I was getting brunch at my college dining hall when I ran into one of the staff members. I've written before about some of the awesome people who work there, but this girl is new, so I've only seen her a few times.

Still, she always makes an effort to catch my eye and wave, and we've conversed a few times. Sometimes she saves me a spot, and today she took my arm and guided me to my table. As I set down my plate, I asked her about her day. She said something about a friend, but I didn't quite understand because she has some difficulties speaking.

"I'm sorry, I didn't quite catch that...what did you say?"

She tried again. I still didn't get it."Sorry...what was that? Something about a friend? Which friend?"

She smiled and pointed. "YOU. You are my friend!"

The feeling is mutual, and I told her so. :) I couldn't help but wonder though...is there a "right" way to ask someone for clarification if you can't understand their speech? I imagine that it will happen again in the future so I wanted to ask my readers' opinions.

Sometimes I just smile and nod, but I'd much prefer to try to understand if I can. At the same time, I don't want to ask for clarification too many times, because nothing's more annoying than having to repeat yourself six million times until someone finally gets what you're trying to say!

What do you do when you don't understand someone, particularly if that person has speech difficulties? Is it okay to "guess," as I did? As a person with a disability, I know firsthand how frustrating it can be when someone is insensitive, and I'd like to be as respectful as possible. :)

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

SLOW DOWN AND LISTEN!

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 breathe...it 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.