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.

Monday, February 23, 2015

Hugs Scare Me

The world can be divided into two kinds of people: people who like hugs and people who don't.

If I hadn't been born with CP, maybe I would have fallen into that first group. But my fear all started years ago, when a single hug scarred me for life.

When I was younger, another girl went to hug me and she leaned into her hug just a little too much...I'm sure you can all see where this is going, but she ended up on top of me.

I cried.

Anyway, ever since then, when I see someone coming at me like this:

I panic a little.

Recently, one of my friends came to my room after a bad day and said, "I just need a hug."

Oh no. I can give advice, or you can sit on my bed and recount your day to me for as long as you need, and I will express sympathy for every little thing that went wrong, or I will pull out a bag of M&Ms and we can stuff our faces together. But hugs? Hugs scare me.

I've never been a graceful hugger. I still GIVE hugs if they're requested, or if another person initiates them, because it's the right thing to do. But I feel like I'm the most awkward hugger in the world, because the entire time I'm thinking to myself, "Please don't fall on me, please don't fall on me, PLEASE DON'T FALL ON ME" and I'm trying not to end up on the floor.

She picked up on my apprehension too, because we then proceeded to laugh at my awkward hugging...and then I explained about the little girl who ended up on top of me many years ago, and we laughed some more.


So if I ever see you in real life and you come at me for a hug and notice that an expression of vague panic crosses my face, I want you to know that it's not you....it's your hugs. Some people are afraid of heights, some people are afraid of spiders...and I'm afraid of hugs.

Saturday, February 7, 2015

PACS1 Awareness Day: For Bridget

Long before I stumbled across Kerri's blog, one of my favorite television shows was House, M.D. A scruffy, sarcastic, brilliant-minded doctor and his team work to discover the causes of their patients' mysterious medical conditions, and their first ten guesses are usually wrong. Invariably, though, they manage to correctly diagnose and treat their patients within the span of 45 minutes. All we have to do is sit back and watch.

But Housewith all of its fancy camera angles, witty one-liners, and carefully-practiced actorsdoesn't portray reality. I came to this realization when I found Kerri's blog, when my eyes fell on its title, stretched across my screen: Undiagnosed But Okay. As I read her story, I fell in love with Kerri and her family. We have never "met" in person, and yet Kerri is one of the most incredible people I have ever encountered...read her blog and see for yourself! :)

Bridget rocking her princess crown :) (used with permission)
Kerri's little girl, Bridget, has a variety of medical issues (as well as an amazing spirit, a beautiful smile, a crazy amount of tenacity, and gorgeous red curls!), and for the first four years of her life, she was undiagnosed. Her story isn't mine to tell (and I could never do it justice), but Bridget's family continued to search for answers, refusing to wait for "science to catch up." And then, this past summer, something amazing happened: Bridget was diagnosed with a rare genetic mutation called PACS1 syndrome.

PACS-what? you might say. I hadn't heard of it either, and the trouble is, neither have most doctors! In fact, it's so rare that Bridget is one of only 20 children in the world who have been diagnosed with PACS1. Kerri took her daughter to a private doctor, and exome sequencing was done, which revealed this genetic mutation. However, as Kerri has written on her blog, due to insurance and approval issues, the majority of parents cannot obtain exome sequencing for their children. This means that they cannot receive the answers that they so desperately need, that their children will continue to be undiagnosed for years and years...all because of a lack of awareness.

I am asking you, my readers, to please take a few moments to spread awareness of PACS1; every little bit helps! Share this post...share Kerri's post...share Ruchira's post...visit the PACS1 website...or "like" the PACS1 Facebook page. Our hope is that as PACS1 awareness spreads, more families will have access to the testing that their children require, and that parents will refuse to accept "I don't know" as a diagnosis. These children and their families deserve answers...surely there are more individuals with PACS1 who have simply been labeled as "medical mysteries," whose parents lie awake at night wondering about their children's futures. Maybe your "share" will be the one that leads another family like Bridget's to the answers that they need. Maybe your "share" is the answer to their prayers, the missing link that they have been searching for.


You might be just one click away from showing yet another family that they are not alone.

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. :)