Monday, December 17, 2012

The Day That Changed Everything: Part 2



Before I begin, I want to say that my thoughts and prayers are with the people of Newtown. May God bless the victims and their families. There are no words.

I realize that it's been weeks since I've last written; I'm sorry it's taken me so long to write this post. These last few days have turned my world upside down; I had final exams to study for and a sudden funeral to attend, so I'm only now sitting down to write this.


Part 1 of this story is here.

 xxx

I'm sitting in the back of the car as my mom drives me to the pediatrician's office, and each time there's a slight bump in the road, the pain in my leg is excruciating. Up until this point, it didn't hurt too badly, but now, each and every jolt makes it spasm violently and uncontrollably, blurring my thoughts into nothingness. 


The pediatrician's office says they're on their lunch break so they refuse to take me, refuse to even look at my leg. "Go home and rest it for a few days and take some Tylenol. It's probably just a sprain," they suggest. 


Just a sprain.


We head over to the walk-in clinic instead, where they examine me immediately. There's no bruise on my leg, an ominous sign. It seems like we're there for hours, and maybe we were; I'm not sure. The spasms seem to  calm down a bit now that my leg isn't being bumped around. They take X-Rays and I watch as they whisper amongst each other. At this point, I have no idea what's going on or what's wrong with my leg, and for some reason I'm not even terribly concerned.


They decide to call an ambulance to take me to the Children's Hospital. The ride there actually isn't too bad. It's almost fun. The EMTs secure my leg so well that it barely hurts the entire way there, and I remember thinking how interesting it was to be able to look out the rear window of the ambulance, watching the cars drive by. 


Once I'm in the ER, the spasms begin again in full force, and the pain is unimaginable. A nurse tries to give me an IV, but even an IV isn't simple with me. My veins are smaller than normal, so it seems like she's poking me with the needle over and over and over. I HATE needles, so I just try to tell myself to focus on the ceiling, focus on anything but the sharp pains in my hand and my leg. 


Then, one poke sends blood spurting out of my hand like a fountain, and I hear my mom's voice dimly in the background: "Don't look, don't look. Keep looking at the ceiling."


I don't look, but I get the impression that blood is spraying all over the nurse's white coat, and she shouts for assistance. Somehow they get the bleeding under control and I finally get a successful IV. 


A doctor looks at my leg and declares that it's broken. Apparently the spasms are a protective mechanism, but my CP greatly exaggerates them so that they are more painful and more pronounced than they would normally be. 


"When was the last time you've eaten?" he asks.

I think of the Pringle that I was unable to bring myself to eat, and I respond that I hadn't eaten anything since breakfast. 


"Good," he says, "because the blood supply to your leg has been disrupted, so we need to do emergency surgery NOW." 


I think back to the morning, when my day was ordinary and routine, and that seems like forever ago. 

I barely have time to comprehend what's going on before they administer the anesthesia and the whole world goes black. 

Little did I know that this was only the beginning of my journey.

Part 3 will hopefully be coming soon.

Thursday, December 6, 2012

The Day That Changed Everything: Part 1

We all have days that change our lives forever; sometimes we know they are coming and can plan for them, and other times, they occur so suddenly that we don't know what hit us. 

Five years ago today, I climbed out of bed to confront a day that, unbeknownst to me, would forever change my life.

Exactly five years ago, on December 6, 2007, I fell. I fall a lot, and it's usually not such a big deal...I stand up, brush myself off, and assure the concerned bystanders that "I'm okay!" But this time, I couldn't get up.

The day started out like any other, normal enough. My mom dropped me off at school and as she said goodbye, she reminded me that the two of us were going to head to the gym after school to work out.We never made it there.

When I got to class, I realized I couldn't find my library book. I told myself that it was okay, I'd just look for it when I got home. But I didn't go home that day.

Besides for that, my morning was going pretty smoothly. Science class had just ended, and I scooped up my binders and waved to my friend. 

"I'll see you at lunch in a minute!" I said to her. But I never made it to the cafeteria.

As I was walking out of the classroom and making my way over to lunch, I slipped. I fell almost in slow-motion. . .as I went down, I remember grabbing desperately for the water fountain that was right next to me, but I couldn't grasp it quickly enough and I kept falling. I fell so slowly, in fact, that I remember making a conscious decision to avoid taking the impact on my elbows because I hate, hate, hate scraping my elbows (something I had too much experience with throughout elementary school). So I landed on my left side, meaning that my leg crashed into the cement floor, taking almost the entire force of the fall.

I sat there in a heap, and one of my friends rushed over and asked if I was okay. I think I said yes, reflexively, but I wasn't okay. Somehow the nurse had realized what had happened - probably someone had called her, I don't know - and she rushed over. I tried to stand up but my leg collapsed under me. It didn't hurt, but it felt strange and wobbly when I tried to put weight on it. 

The nurse brought over a wheelchair and I felt hot tears begin to course down my face as I pleaded with her. I didn't want to sit in the wheelchair. I just wanted her to help me to try and stand up again so I could head to lunch, where I knew my friends were probably wondering why I hadn't arrived yet.

Eventually I conceded, and with my friend by my side (the friend who had witnessed the accident), I went to the nurse's office. She gave me an ice pack and told me to try to eat some of my lunch, but I wasn't hungry. I remember trying to force myself to eat a Pringle, but I just couldn't. And looking back on that day, as I'll explain later, it's a good thing that I didn't eat my lunch!

Part 2 will come soon! It's a long story though, so I think I need to split it up into multiple posts.

Wednesday, December 5, 2012

Five Awkward Things People Have Said to Me

"It's a shame a beautiful girl like you has to walk like that."

"Oh my gosh, you are so lucky that you get to sign up for classes early! I should break both my legs so I'm in a wheelchair and that way, I'll get to do that too!"


Teacher: "Wow, you're actually very smart!" (I caught that "actually!")


"Wouldn't it be awful to be a handicapped person?"


"You're always so cheerful all the time, and it's really inspiring. I wouldn't be that happy if I were in your situation!" 

Yet another reason to think before you speak. ;-)

Thursday, November 29, 2012

Cripple

Oh, how I hate this word! I hear it tossed around haphazardly all the time. Somebody laughs and points to their friend who is using crutches because of a temporary injury, and says, "Be nice to the cripple," or, "Hey cripple, can I try out your crutches?" And the person on crutches laughs.

Because to them, it's funny. To them, "cripple" is a temporary, transitory label, one that they'll only have to endure for a few weeks at the most. But to me,"cripple" is a label that people will forever be able to apply to me, because my disability isn't going to go away, and it suggests that people who have difficulty walking are somehow inferior to others, like we're damaged goods. So this word catches my breath for a moment as if I have jumped into a pool of ice water.

I remember one afternoon in particular in seventh grade. . .one girl was jealous that I got to ride the elevator, a "privilege" afforded to just a few individuals. One day as we passed each other, she murmured something just loud enough for me to hear: "Cripple."

Whoever said that sticks and stones can break your bones but words can never hurt you was sorely mistaken.

That one word, barely perceived by my ears, sliced me like a knife and embedded itself in my mind, echoing over and over and over, "cripple, cripple, cripple." That one word made me feel worthless. Later, in the privacy of my room, that one word sent me to my knees. That one word buried my face in my pillow, left me sobbing and asking God over and over that age-old question, "Why me?"

Words are power. Use them wisely. 


Stumbo Family Story

Sunday, November 25, 2012

I Am Lucky

I am lucky.

Sometimes, in the back of my mind, a little nagging voice creeps up,
a voice that asks, "Why me?"
"Why do I have to deal with this?"
"Why do I have CP?"
I listen to people complain about running, about gym class, about how their sports practice takes up all their time, and sometimes I wish I could just tell them, "You're lucky."
But then I remember: I am lucky, too.

I can write. I can walk. I can talk. I graduated from high school. I am at an awesome college. I have incredible friends and an amazing family. And because of my CP, I constantly remind myself to remember the little things in life that other people take for granted.

A few mornings ago, I woke up to my dog at the foot of my bed. I sat up, leaned over, and kissed the top of her head. She "laughed," her sleepy eyes sparkling, tipped her head back, and kissed me back, her wet nose pressed against my face.

Thank you God,
for I am lucky.

Tuesday, November 20, 2012

May I Ask You a Personal Question?: Talking About CP (Part 3)


I had the accommodation letters safely stowed in my backpack for weeks, waiting there for when I finally mustered up the courage to give them to my professors. I didn't want any accommodations. . . as much as I can, I try to accommodate to the world; I don't want the world to have to accommodate to me. But when I explained this to the disability coordinator, I felt a lecture coming on about how I need to look out for myself more, so I just shut up and signed the letters.

xxx

I fish for the letter in my backpack and walk shakily up to the teacher's desk.
"I'm sorry that it has taken me so long to get this to you," I mumble as I hand it to him.

I don't know why I'm feeling so embarrassed about these letters...I thought I had gotten past this whole "ashamed of having a disability" thing...I guess I just don't want my new professors to see me as the "handicapped girl," because sometimes it's hard for people to look past that label once it's been established.

He smiles at me, barely looks down at the letter as he shuffles it to the bottom of his pile of papers.

"That's okay, I don't think you needed to get this to me! I mean, it's obvious that you're doing just fine in class! You don't need accommodations," he says, smiling again, referencing the perfect scores that I had received on all of the tests thus far.

"Yeah well...," I force a smile. Deep breath, this is it. Why am I so nervous? "They aren't academic accommodations."


Understanding sweeps over his features. "Oh, yeah. What happened to your leg?"


Why do so many people assume that it's "my leg?" It's BOTH of my legs - does it look like only one of my legs is affected? Weird.


"I was born three months early," I say, hoping that will suffice.


He doesn't miss a beat. "Oh, so you got knocked around and stuff?" he says with a laugh, gesturing with his hands.


Well, that's one way of putting it. Way to be blunt. I want this conversation to be over!


"Well, it's actually neurologically-based...but I'm not cognitively affected."


"Obviously not," he responds, and the conversation, thank the Lord, shifts to math.
 

Well, at least CP keeps my life interesting!

Friday, November 16, 2012

May I Ask You a Personal Question?: Talking About CP (Part 2)

(Click here for part 1) 

My foot still hurts. That's life, I guess. I think I sprained my whole foot and not just my toe. I'm trying to stay off it as much as possible so I decided that while I'm lying in bed I might as well write part 2 of the post from two days ago!

Throughout high school, I volunteered as a tour guide at the Audubon Society. I wasn't aware of this at the time, but one of the dads I met while volunteering worked for the local newspaper. To my surprise, a few days later, my mom got a phone call from the newspaper. One of his colleagues wanted to interview me!

I was reluctant at first. I don't really like being in the spotlight. Even starting this blog was a challenge for me. But my mom urged me to do the interview, and when the interviewer found out that I was a triplet, she decided to interview my brothers as well. 

Before the interview, I ran through a bunch of the possible questions in my head and thought about my answers. I was prepared for questions like, "Why did you decide to volunteer at the Audubon Society?" and "What is your favorite part about volunteering there?" And I did get those questions. But I also got a question that I wasn't prepared for.

At one point towards the end of the interview, she said those dreaded words: "May I ask you a personal question?"

Oh. my. God. I don't know about you, but whenever somebody says that to me, my stomach drops and my heart rate quickens. I wanted to say "NO!" with every fiber of my being, but it's almost a rhetorical question, so I felt obligated to say "yes." I already knew what the question was going to be before she even asked it.

I don't remember her exact wording, but what she said was to the effect of, "I noticed you that you have trouble walking. Why is that?"

I stared at her in silence for a moment, saw her pen poised in the air ready to scribble down my answer. I didn't want her to share my personal life with everyone who reads the local paper, but what choice did I have? This was the question that I wasn't prepared for, and I don't know why it never crossed my mind. 

Quick, think fast! I told myself. And this is what I came up with after a moment of thought:
"I have cerebral palsy, but it doesn't really affect my life too much. I just won't be joining the cross-country team."

And she was satisfied. Some of my teachers at school who read the article came up to me later and said they were inspired by my words. But as I thought about it, I knew that what I had said to that reporter wasn't true. Just something I had told her spur-of-the-moment, given ten seconds to think of an answer to an awkward question.

CP does affect my life. Even though it is fairly mild, it impacts so many facets of my life. I have had surgeries and struggled to walk. I have been told by doctors and therapists that I "can't" do this, that I'll "never" be able to do that. I have been in physical therapy since I was a baby, and going up and down curbs is a triumph for me. I have been judged and stared at by people who don't know me. I have met so many incredible people, and I have learned so many incredible life lessons because of my CP. Whenever I can, I walk to my classes, simply because I CAN walk, and I never take that for granted.

So the next time somebody asked me that question, I said:
"I have CP, but it's been more of a positive force in my life than a negative one. I have learned so much from it, and the life lessons that it has taught me have helped me in all areas of my life."

And when I walked away, I knew that that was how I really felt about CP. Yes, my disability challenges me, and it can be frustrating, but the lessons that it has taught me and the amazing people that it has brought into my life make everything worth it.

Thursday, November 15, 2012

A Terrible, Horrible, No Good, Very Bad Day

Originally I planned to write part 2 of yesterday's post tonight, but that was before today happened.

I stayed up until about 1:30 am last night studying for a math test, thinking that I could sleep in until about 9 because my test didn't start until late morning. Not quite. My roommate's alarm clock woke me up early, and went off continuously every 5 minutes, so I didn't exactly get the restful night's sleep I had planned.

But wait, it gets worse.

I went down to the dining hall to get breakfast and I was about ready to leave when I noticed that one of the dining hall staff members looked upset. I asked her what was wrong and she gave me a hug and started to cry. She explained that she was having a really bad day because someone was angry at her. I tried to comfort her the best I could, and then I realized that I was running late for my math class. Once I was sure she was feeling better, I rushed off to class to take the test.

The test went fine, and I got there in the nick of time, but as I was leaving my class, I fell. One part of having CP is that little things can make you fall. It sounds ridiculous just writing it, but I fell because as I was crossing the street, my heavy books shifted in my backpack and threw me off balance.

I got up as usual and realized that my toe hurt. Really, really hurt. I think I sprained it because I can hardly walk. For most people, a sprained toe might not seem like a big deal, but because I already have problems walking, a sprained toe makes it so much more difficult.

So here I am, in my dorm room, hoping and praying that my toe gets better soon. :( I skipped dinner because I don't want to walk too much on it. I know I'm lucky because it could have been much, much worse (and I have experienced much worse than this...I think I'll save that story for another day!) but I'm just frustrated, hungry, tired, and in pain. Some days I wish I didn't have CP so stupid little things like books shifting around in my backpack wouldn't send me to the pavement.

I want this terrible, horrible, no good, very bad day to be over!

Wednesday, November 14, 2012

May I Ask You a Personal Question?: Talking About CP (Part 1)

"What happened to you?"
"Why do you walk like that?"
"Are you paralyzed?"
"What happened to your legs?"
"What's wrong with you?" 
"Why do/did you you use crutches?"
"Why can't you walk straight?"

As a person with a disability, I'm no stranger to questions like these. I've been fielding questions about my gait for as long as I can remember. In preschool, I distinctly remember replying that "I got hurt in my mommy's tummy," which probably isn't exactly true, but at that age, that was the extent to which I understood my disability, and my peers were usually satisfied with this answer.

In general, I was comfortable answering these questions, but as I got older, I felt more awkward answering them. They were almost never asked with malicious intent - just curious, innocent questions, but every time somebody asked them, I felt warmth spread to my face, and my muscles tensed.

Writing about my disability has helped me become more accustomed to speaking about it, but it's still something that I struggle with. I think some of my trepidation came about when I reached elementary school, because even as a young child, I remember being conscious of the fact that adults usually avoided the topic with me, almost like it was taboo. I think some of the awkwardness stemmed from my own feelings too, though, because I hated being tagged as "different." I wanted to be like everyone else.

Once I reached middle school, the questions about my disability stopped almost entirely. Sometimes even the lack of questions bothered me (you never can win, can you? haha), because I knew people wondered about my gait but were too afraid to ask. In fact, some of my best friends didn't even know about my CP! Obviously they were aware that I walked differently, but they didn't know why. It's not that I was being secretive or anything, but it's not exactly the easiest conversation to bring up, and if they accept me for who I am regardless, why bother?

What's more, even when I did receive questions, rarely did I answer them by actually saying "cerebral palsy." It's just not a term that I usually say out loud. I've always wondered: does the general population even know what CP is?
 

Click here for part 2 of this post! :)

Sunday, November 11, 2012

CP and Friends

"Does your CP make it difficult for you to make friends?" she asked. 

I was talking to my seventh grade guidance counselor about I-don't-even-know-what, and somehow the end of the conversation turned to this. 

 No, it doesn't. Some people judge me and won't bother to get to know me because of it, but why would I want to be friends with them anyway?
  
I saw the pity cloud her eyes and I knew she didn't understand. But I said what I meant and I meant what I said. 

My friends are amazing. Amazing. Maybe I'm biased, but they are some of the nicest, most authentic people that I've ever met. They don't see me as different from them but they are aware of what I might have trouble with, and they're always willing to offer help if I need it. 

Isn't that what friends are for? :-)

I want to write a post sometime that outlines all of the perks of CP! This is definitely a huge one. . . I attract only non-judgmental people. ;-)

Tuesday, October 30, 2012

Choices

In life, we all have choices. Some of these choices are insignificant; others could change the course of our lives forever. I have made plenty of choices in my life, and like all of us, I regret some of them, and others impacted my life in incredible ways. But this post isn't about my choices. It's about the choices of my peers.

During one fourth grade gym class, we were supposed to be jumping rope. I can't jump rope, but my friends swung the rope slowly and I stumbled over it. They didn't make me feel different, inferior because I couldn't actually jump the rope. They didn't laugh at me, ignore me, or badger me with uncomfortable questions. They counted my steps over the rope, and I counted their jumps. And that little moment eight years ago, a moment which they have probably forgotten, will be forever etched in my mind.

Fifth grade kickball. Before my turn, my teacher looked me in the eye and asked me if I wanted to try to kick the ball. Yes, I said. I want to play. Heart pounding, I kicked that ball and ran. Ran in my own way, a stumbling fast walk, but I ran. I made it to first base. I heard a voice urge me to keep going, keep going. So I kept running, around all of the bases, back to home base. I scored a point in a Friday afternoon fifth grade kickball game. A game that my classmates probably don't remember, but one that will always be significant to me because I realized later that they let me score that point. And that is a beautiful thing.

Karate class. I had to be lifted over some of the obstacles in the obstacle course because I couldn't jump over them. At first I was embarrassed by this, embarrassed that I had to be carried through part of the obstacle course, but then I heard the cheering. Throughout the duration of the obstacle course at the end of each class, my peers cheered for me. They could have torn me down, whispered behind my back, but they didn't. They made me feel proud.

These kids had a choice. They could have teased me, ignored me, questioned me, but they didn't. They made an awesome choice. And for that, I thank them.
Stumbo Family Story

Friday, October 26, 2012

Lack of Acceptance: "Somebody Actually Acknowledged Me"

About a month and a half ago, I was eating breakfast in the dining hall, and I said hello to one of the women who works there. We talked for a while, and it became clear to me that she has autism. Autism or not, however, she is incredibly friendly and kind, funny, and interesting to talk to, and she's obviously no less of a person than anyone else, so why should she be treated differently than others?

After our conversation, what she said next broke my heart. Approaching a fellow cafeteria worker, she announced, "Guess what? Somebody actually acknowledged me!"

This hit me so. hard. I can't imagine going to work each day and feeling invisible, ignored, unacknowledged.

And then I saw her again yesterday. Our eyes met for a moment and she smiled and ran over.
"I love you like a sister," she said, and leaned in for a hug.
"I love you like a sister too," I responded, and happiness filled my soul.
We talked some more, and I know she's an animal lover like I am, so I pulled out my phone and showed her a photo of my cats.
Just then, a man came over, another cafeteria worker.
She introduced me to him.
I could tell immediately that this man looked down upon her - his demeanor and the way that he spoke to her  said it all.
"We're friends, aren't we?" she said to me.
"Of course we are!" I responded, meaning it with all my heart.
Thank you, he mouthed to me, and he ushered her away.
I forced a smile back but I felt my insides burning.
I know he was thanking me for being friendly to her, like it's not mutual.
That's not true.
She's my friend, and I'm hers.
I'm not doing doing anyone a favor..she's not a charity case!
Why make that assumption?
What makes you think, Mr. Cafeteria Worker, that I don't genuinely want to be friends with her?
Maybe I'm being too sensitive about it, but it really bothered me. What is wrong with some people?

I wish some people would take the time to see past disabilities so they could truly get to know their fellow human beings.

And then the saying comes to mind: Be the change you want to see in the world.

Thursday, October 25, 2012

Transcending CP: A Snapshot of My Life

            Every single day. Every single day for two years, weather permitting, I rode that bike, my knuckles white from gripping the handlebars, my eyes fixed on the stretch of pavement ahead, and determination bubbling in my chest. To some of the neighbors, I was that girl that was to be pitied, that girl with a disability, that girl whose parents were told she might never walk independently. Evidently those neighbors underestimated the power of perseverance. One afternoon, I was pedaling home from the bus-stop with my mother gripping my shoulders, and it was an ordinary day except that after a moment, she let go. She let go, but I kept pedaling, willing myself to stay upright, willing myself to ride that bike independently for the first time in my life at age nine. And I did. 
            It’s called cerebral palsy, and as a triplet born three months prematurely, I was at a higher risk for it. The form I have primarily affects my lower body, but it hinders my brain’s communication with my muscles, so some physical activities can present a challenge for me.
However, challenges inspire me, and those who look beyond my gait see so much more. They see a girl at the top of her class, a girl who studies meticulously and has a passion for learning. They see a girl who has taken piano lessons for over eight years, a girl who fingers difficult pieces until they’re mastered. They see a girl who isn’t defined by her limitations, a girl who knows that she is capable of anything. 
Like me, he was capable too, but it was difficult to see. He was wheelchair-bound, with frozen limbs and an inability to speak. It was a blindingly-bright morning, the day of the Audubon Society’s annual fair. As a volunteer, my event required participants to throw a ball at a target, and when the boy and his father started to retreat, I stopped them. Peering into the boy’s eyes, I asked if he would like to try, and his father responded, a smile in his voice, “I think he would.” The expression on the boy’s face was indelible as his hand was gently guided into throwing the ball. Although his muscles were unforgiving and his body was stiff, there was a sparkle in his eyes and laughter in his smile. I remembered the feeling that I had when I first rode that bike, and I imagined that his spirit, too, was soaring.  
I am no longer that girl to be pitied, that girl with a disability, that girl whose parents were told she might never walk independently. I am that girl to be admired, that girl with endless abilities, that girl who not only walked independently, but rode a bicycle, and rode it as quickly as her legs could carry her. I am that girl who transcended a doctor’s diagnosis with sheer willpower, and that girl who gives others the opportunity to do the same. I am that girl.