Thursday, October 22, 2015

Presuming (In)competence

When I was in sixth grade, I received in-school physical therapy when the rest of my peers attended gym class.

"Hel-lo there! How...was...your...week...end?"

The therapist's words were slow and measured, punctuated with several moments of silence between each syllable, and her voice was about two octaves higher than normal. I hated the way she avoided my eyes when she looked at me, staring through me as if I wasn't an actual person. I hated the way she made me strap weights to my ankles and walk through the crowd of my classmates as they participated in gym class, my face burning with humiliation as they watched me. And most of all, I hated the way she spoke to me as if I was half my age.

I endured her with forced politeness for weeks until one day, after I waited through her routine and painfully slow weekend inquiry, the words just bubbled out of me.

"Stop speaking to me like that! I understand what you're saying! Every. Single. Word. You don't need to speak so slowly! My weekend was great, and how was yours?"

That last part sounds polite when I write it here, but unfortunately I couldn't quite manage to keep the sharpness out of my voice, so she just stared at me with her mouth open, completely lost for words. I never went to in-school PT again after that.

I think she saw "cerebral palsy" in my chart and assumed, like so many others, that I was incompetent, incapable of understanding. And it's people like her that have made me hesitant to disclose my cerebral palsy to my teachers and professors.

Recently, I emailed a professor about fundraising walks he was hosting for Alzheimer's disease and autism; as part of his neuroscience class, we were expected to attend these walks. I explained that I had CP so it would be challenging for me to participate in the walks themselves, but I asked if it would be okay if I just donated to the causes, as they meant a lot to me.

His reply was gracious, and at the end of his email, he asked if I would be comfortable meeting with him sometime to discuss my CP in greater detail.

Yes, I wrote back. Of course.

But deep down, I was hesitant. Deep down, I was conflicted. Deep down, I wasn't really sure how I felt about having this conversation.

And then I talked to a friend about it.
"If you don't feel comfortable talking to him about it, then don't. You shouldn't have to talk about anything personal to a professor," she said. "But if you do talk to him about it, make sure he realizes that it's not who you are. It's just a part of you. There's a difference."


I don't want my professors to see my crooked legs before they see my potential. I don't want them to dock ten points off--or add ten points to--my essays and exams because I am "that girl with the damaged brain." I want to approach them about my disability but sometimes I'm not sure how.

I am not perfect, I want to say. But neither are you.

I have a disability, I want to say. But I am able.

I am different, I want to say. But so are you.

My disability isn't who I am. It's just a part of me. There's a difference.

Saturday, September 12, 2015

The trip I forgot to update you guys on, leaning on friends, 1am milkshakes, and the little act of kindness that made my day

It's strange to think that when I started this blog nearly three years ago, I was just barely a freshman in college and just barely comfortable writing about my cerebral palsy. I feel as though I am in a much more confident place now, and I owe much of that to YOU guys, my incredible readers and supporters. Thank you for your encouragements throughout all of these years...they mean so much, and it's been such a privilege to have your support as I navigate through my college years!

I feel like I owe you guys an update, and I'm going to make more of an effort to post more often again. First, thank you to everyone who commented on my last post, in which I was trying to decide whether to go on that trip with my friends. I WENT, in large part because of your encouragements...and I'm so glad I did.

I had such an amazing week with them. We spent a couple days shopping around in the nearby tourist town, went on a boat ride, swam in the lake, played card games, watched movies, stayed up late into the night, and visited a historical museum (my favorite part!).

My CP complicated matters a little bit, but it didn't impact the trip nearly as much as I had anticipated...partly because I have such amazing friends! They didn't make fun of my Crocs when we went to the lake ;) (flip flops don't stay on my feet), they matched my pace when we were out walking, and they waited for me when I lagged a little behind. Getting to the lake was a challenge for sure because there was a lot of uneven pavement and TONS OF STAIRS, but it was manageable. In the lake, I just swam in areas that weren't much over my head, and I asked one of my friends to take my hand for balance when we waded through the waves (which was a Big Deal for me...but I shouldn't have been nervous to ask! She took my hand with a smile and it was No Big Deal after all. :) ).

At one point, they wanted to walk out onto a narrow dock that didn't have any rails on the side. I laughed and said something like, "You guys go ahead, but I think I'll just sit on the side of the dock. I can just see myself losing my balance and falling in." One of my friends took my hand just then and said, "Let's just sit here, then. This is the perfect spot." So we sat on the edge of the dock together, and as we watched the sun setting in the sky, I felt so lucky to be surrounded by such amazing people, people who accept me just as I am.

And here at college, I am still surrounded with amazing people. Just the other day, I was walking back from class in a torrential downpour, and I was absolutely SOAKED. I didn't mind too much, because I was so wet that I was past the point of caring (do you ever get to that point? haha), but as I was making my way back to my dorm, I passed a boy walking in the opposite direction with a giant stack of boxes in one arm and an umbrella in the other. A few moments later, he had turned around and was shielding me with his umbrella.

"You live in that dorm over there, right?" he said, gesturing with his armful of packages. "Let me walk you back to your room."

It was such a simple gesture, but his kindness made my day.

Speaking of amazing people, I spent the day yesterday with my incredible cousin, who is just one year older than I am, and who was diagnosed with late-stage brain cancer when she was in eighth grade. After a battle with surgery, chemo, and radiation, she went into remission, and she has been cancer-free for a number of years now. I won't go into details because her story isn't mine to tell, but we had such an awesome day together...and she brought chocolate cookies! :)

And then last night, I went to my first horror movie in theaters with a group of really good friends. We had such an awesome time, and then we went to a rundown old diner at 1 in the morning and ordered milkshakes and enjoyed the fact that it was (finally!) Friday. I know it sounds silly, but I am just getting comfortable enough to ask my friends for help up and down curbs—they helped me with several yesterday and it wasn't awkward at all. :)

I would love to write more (I have so much more to write about!!), but I have hundreds of neuroanatomy terms to memorize (how I wish that was an exaggeration...), so I'd better get to work. I'd love to hear what my readers have been up to, though – it would mean a lot to me if you'd leave a comment! I'll try to make time this week to catch up on the blogs on my sidebar too. I've missed you guys so much, and I will never be able to thank you enough for being such an awesome support system. xoxo

Monday, July 13, 2015

CP and the struggle between being realistic and living life to the fullest...

It was such a good day at the beach—every breath of air was sweet and salty, not like chocolate pretzels sweet and salty but the kind of sweet and salty that you can only find by the ocean...and the water was a little chilly, but not so cold that it ached with every step.

And yet, as I watched the other beachgoers moving so carelessly and effortlessly as they threw themselves at the ocean and bounced through the waves, I couldn't help but ache. I wanted to join them so badly, to run past the shoreline until the waves climbed above my waist, to duck my head under and feel the saltwater sting my eyes. I knew that I could have asked my brother or my parents to take my hand and they would have, but I didn't want to inconvenience them, and so I just pretended that I just wanted to go in up to my ankles anyway.

It all sounds so trivial now, but it's just so hard, especially at this stage in my life. My friends and my brothers are traveling, exploring the world and going on trips and being 21-year-olds and sometimes it feels like all I can do is sit back and watch because of my CP.

A few weeks ago, my two best friends went on a week-long trip to Europe and they asked me to join them. I've never been out of the US before and oh, how I wanted to go with them...but the reality is, with my disability, I can't just make spontaneous plans. I have to consider whether I will be able to manage the airport, my bags, walking long distances...I have to consider whether I will be able to manage the curbs and the steps, and whether my friends have their hearts set on a tourist attraction that wouldn't be practical or possible for me. And so I had to say that I couldn't go, and I blamed it on the fact that I have an internship this summer—which, to be fair, was a major complicating factor and a perfectly valid excuse. But I couldn't help wondering whether I would have been able to go on that trip if my life had turned out differently and I was born without CP.

Now those same friends are planning a road trip in a week or two, and they are begging me to join them. I am sitting here in tears because I don't know what to my heart, I want to go. I don't want my CP to limit me, to hold me back. But I also don't want to hold them back. I know that if I told them this, they would assure me that it wasn't an issue, and for sure they wouldn't leave me out—they're the kind of friends that head for the flattened part of a curb automatically, and they do an amazing job of being sensitive to my needs while also not focusing on my CP. But I want them to be able to hike and swim without reservation, without worrying about whether I can safely join them.

And I have to consider my own personal well-being as well...what if the lake is too deep for me to safely swim? I'm not a bad swimmer but my balance issues mean that I have to be more careful.

Sometimes I just wish I could participate in life as fully and as freely as everyone else seems to be able to, without having to worry about any of these "extras." I'm really struggling with finding that balance between living my life to the fullest without letting CP dictate what I can and cannot do and being realistic and responsible about my limitations.

Friday, June 5, 2015

Just Plain Capable

Her eyes were filled with the warmth of her smile as she reached out her hand in greeting. At first glance, I was just another student interviewing for an internship position, probably unremarkable from the countless others that she had seen. And then I stood up.

I watched as her eyes flashed to my legs and for a moment I was reminded of something that my biopsychology professor had said in class about six months prior...He said that our brains have something like a filter—to maximize efficiency, our cerebral cortex tends to ignore information that is consistent with our previous life experiences, and it takes notice of what conflicts with our expectations.

My legs conflict with expectations, and for better or for worse, I guess that means that I'm remembered. I am not ashamed of my disability, but sometimes—especially in interview situations—I wish that my CP wasn't as conspicuous. I want people to see that I possess skills and abilities without a qualifier. I am not incapable, and I am not capable in spite of my disability. I am capable.

I guess my interviewers decided to give me a chance because I am interning for both of them this summer as a research assistant. I can't really go into details as most of it is confidential (it's a children's psych and neuropsych hospital), but between both positions, I am currently working 5 days a week from 8:30 to 4:30. Then I come home and tutor from about 5:30 or 6 until 11 o'clock at's been a long week and I'm just now finally getting a chance to put on some pajamas, eat some chocolate, and take some time to relax!

I feel terrible that I've neglected this blog for two months (!!!), and I have so much to write about...I promise I will write more soon (and catch up on all of my blog friends!)...but for now, I'm going to SLEEP! Goodnight :) 

(P.S. If you're reading this....thank you for coming back even after all this time! xoxo)

Monday, April 6, 2015

The Act of Staying Upright

"I really want to do it," I said to my friend as we stared at flurries of snow.

It was 10 pm and she needed to head to one of the science labs in the middle of a snowstorm in order to work on a project. And for some inexplicable reason, I was dead-set on coming with her. I still don't know what compelled me to go. From a logical standpoint, I was being completely reckless and irrational... it was pitch black outside, and one stumble on a patch of freshly formed black ice could jeopardize all of the physical gains that I had worked so hard to achieve.

But I guess there really is a rebellious college kid that dwells somewhere inside of me. Getting drunk at a party holds no appeal for me whatsoever (in fact, although I recently turned the legal drinking age, I've never even had a sip of alcohol...This is partly for personal reasons but also because I'm afraid to see how clumsy I'd be if I were intoxicated!), but this was my own way of taking a risk, my own act of youthful defiance. I'm not even much of a risk-taker, but I guess when you have CP, venturing out into a snowstorm is its own kind of thrill.

"It'll be an adventure!" I pressed.

My friend smiled nervously. "I really, really want you to come, 'cause it'd be awesome to have your company in the lab, but I don't know...I think it seems like a bad idea. I really don't want you to get hurt."

Just then, someone came inside from the storm. He stared at us, eyes wide, and pulled the scarf down from his mouth. "Don't go out there," he whispered, his tone ominous.

We laughed and thanked him for his timely advice. Then, as soon as he left, my friend turned toward the door.

"Well," she sighed. "I guess that's settled."

"Yep!" I said. "I'm going!"

In the end, we agreed that I'd turn around if it got to be too much for me to handle...but there was just something inside of me that really wanted this chance. I really wanted to prove to myself that I wouldn't let my CP stop me, however stupid I was being.  

At one point, about halfway through our journey to the lab, my friend turned to me. "I wonder if...could I...could I hold your hand?" Then she burst out laughing at the expression on my face. "Never mind. I didn't think you'd go for that."

(Side note: I love that she offered!!!)

Overall, the trip was a success—I survived with everything intact, and we didn't inadvertently cause any explosions in the lab—but admittedly, the trip back was especially slippery and there were a few fleeting moments during which I was afraid I might fall. And then...then there was a fleeting moment during which it occurred to me that other people my age don't have to worry about stuff like this. For most of my classmates, braving a snowstorm is a nuisance but it's not really a risk. For them, it doesn't have to be an act of rebelliousness. 

For them, the act of staying upright is not a struggle.

At about 1:30 am, we stepped back into the safety of our dorm building. My friend turned to me as the tingling warmth rushed into our fingertips.

"Any regrets?" she said.

I stomped the snow from my boots.

For them, the act of staying upright is not a struggle.
For them, the act of staying upright is not a triumph.

I smiled. "No regrets."

Thursday, March 5, 2015

Pretty Amazing

I saw her kindness tucked behind the bins of canned soup in the pantry, in the form of five boxes of Saltine crackers.

They're for my second-graders, she said. Some of their families can't afford to feed them breakfast in the morning, and they kept saying they were hungry.

 I saw her kindness in the pink nail polish she carefully painted onto my nails when I was nine years old, on the night that my dad and my brothers went roller skating. "Who needs roller skates when you have nail polish and ice cream sundaes?" she said.

I saw it in the tears of joy she cried for the little boy with a learning disability when he read his first book, as her entire class of students broke into unprompted applause for their classmate.

I saw it in the hours of time she spent after school tutoring a little girl whose native language wasn't English and who was struggling to understand math—a little girl who wasn't even in her class.

I saw it in the endless hours she spent helping ME with MY homework all throughout my elementary school years, in the crazy school projects that I definitely did not do all on my own.

I saw it in the letter she left on my pillow when I was having a difficult day.   

I saw it when she peeked her head into my room one day and said, "Let's get ice cream!" When I asked her why, she just smiled. "Does there have to be a reason to get ice cream?"

I saw it in her eyes when she took my brothers and me out to lunch for our eighth birthday and an elderly couple stopped by our table to comment on how well-mannered we were. "Thank you," she said. "They're pretty amazing." Thirteen years later, I couldn't tell you what I got for material presents that year but I tucked away those words and they remain the most memorable birthday gift that I've ever received.   

I saw it when a stranger accidentally locked her toddler in her car and the fire department had to be called, and my mom went up to the woman and embraced her, wiped her tears and reassured her that she was an amazing mom, that we don't have to be perfect.

And maybe "We don't have to be perfect" was the kindest sentiment that she ever instilled in me...when I came home from school crying because somebody had said something about my legs, and she looked me in the eye and said, "Yeah, you have tightness in your legs and I know it's hard and I know you want to cry sometimes and I know it doesn't seem fair. But you don't have to be perfect. You've overcome so much, and you're already incredible just the way you are."

Sometimes when I'm out and about, somebody will come up to me and say, "You remind me so much of your mom." Usually when someone says that, I laugh it off and change the subject. But next time? Next time it happens, I will think of her and everything she has done to make the world a better place. I will think of her and her quiet acts of kindness and I will smile.

"Thank you," I will say. "She's pretty amazing."

Monday, March 2, 2015

On Being a "Disabled Student"

Sometimes I wonder if I'll ever get used to being a person with a disability. Is that something that somebody can "get used to?"

A few months ago, I was relating a story to one of my friends about a situation that I had dealt with earlier in the day.

"I was halfway to orgo lab when I realized that I left my lab notebook in my room and I had to walk all the way back and get it! I ended up being ten minutes late to class but the lab professor still let me take the quiz!" [The policy is that if you're late to chemistry lab, you get a zero on the pre-lab quiz.]

My friend nodded, confused at my tone of surprise. "Well, yeah. I would have let you take it too."

"Really?" I was shocked.

She started to laugh, then motioned to my legs with her eyes. I followed her gaze and only then did I "get it."

"You can't really run across campus to get back to your dorm room. You had the perfect excuse for being late!"

I started laughing too, because it had never even crossed my mind that I had an excuse.

I remembered this story because of something that happened this morning. This has been one of the snowiest winters we've had in years, and as I was walking to class with one of my friends, I stumbled on the snowy pathway leading from my dorm. I caught myself in a snowbank and leaned on a mound of snow to help me keep my balance until we reached clean pavement. If it sounds awkward to you—yeah, it was—but I didn't think much of it because at this point, awkward is kind of my life. ;)

 "Sometimes I think my life should have some heroic music playing in the background, with a couple of slow-mo scenes thrown in," I joked to my friend as we continued on our way.

After my class (a genetics exam! It was a crazy day.), I opened up Yik Yak on my phone. (For those of you who don't know what Yik Yak is, it's a social media app in which people within a 10 mile radius from each other can anonymously read and post comments.) The top Yak was something along the lines of: "Get it together, [name of my college.] How about you shovel the pathways so the disabled students don't fall? I just saw a girl fall because of the lack of shoveled snow."

It took me a few moments to realize that this comment was specifically referring to ME. I wasn't offended by it (quite the contrary; I think this person was well-intentioned), but I don't think I'll ever get used to being a "disabled student." I simply don't think of myself as "disabled," and I don't know if I ever will.

As I find my place in this world, I'm discovering that the more I accept my disability as part of who I am, the more I realize just how ABLE I am.