Tag Archives: Adversity

My First Speaking Event: Cerebral Palsy and Bullying

30 Oct

Last Thursday, I had my first speaking event. I spoke to an elementary school book club in Asheville who had read Out of My Mind, in which the main character in the novel has Cerebral Palsy, the same disability I have. I was asked to come and speak about being bullied in school because of my Cerebral Palsy.

Below is the talk I read to the students and their parents of the book club (disclaimer: I have changed the names of people in order to protect confidentially):

When I was 7 years old, I played on a coach’s pitch baseball team, and there is one game I’ll never forget. I was up to bat, and my coach, Mr. Mark, stood on the mound smiling at me. He pitched the ball, and even though I hit the ball, it didn’t go far. It landed close to Mr. Mark’s feet. There was a player from the other team standing behind Mr. Mark, but Mr. Mark grabbed the ball and kept it away from the other player. At first, as I was running to first base, I didn’t know what was going on. I just knew that the first baseman hadn’t caught the ball yet, so I kept running. As I was almost near third base, the biggest grin spread across my face as I realized what Mr. Mark had done: he was giving me my very first home run. I remember running as fast as I could from third base to home plate, and as soon as my feet touched home plate, everyone in the crowd jumped to their feet and cheered for me. In that moment, I got to be a normal kid, and I got to feel the happiness that comes with completing a home run. If only for one night, I wasn’t a girl with Cerebral Palsy. I was a baseball player, a team member, and probably one of the happiest people in my hometown, if only for a moment.

Just like the character of Melody in Out of My Mind, I have Cerebral Palsy. Though I am not in a wheelchair or unable to talk like Melody, my Cerebral Palsy affects the way I walk because my muscles are really tight and because I don’t have very good balance. Because of being physically different, I was always an outcast in school. I had trouble making friends, and it was hard not having someone who knew what I struggled with on a daily basis. When I walk, it is very evident that I am different, and because of my visible differences, I was an easy target for bullying in school.

I had my first bullying experience when I was in kindergarten. At that age, I had to use canes to help me walk. Because of having to use canes, I wasn’t able to walk very quickly, and there was a girl named Ashley who enjoyed picking on me because she knew I wouldn’t be able to run away. Every day on the playground during recess, Ashley came up behind me and pulled my hair. It wasn’t a friendly pull either. She grabbed a fistful of my hair and yanked as hard as she could, laughing as I screamed in pain. She pulled so hard that I couldn’t even try to get away from her. Every day, I came home crying, and every morning, I woke up dreading having to go to school and see Ashley on the playground. I felt like crying when I realized I was completely alone. No one was sticking up for me, and it made me really sad. One day, my teacher, Miss Sandy, came up to me and told me to hit Ashley with one of my canes to help her realize that what she was doing was hurting me. See, Ashley was mentally disabled, so she didn’t know any better, and hitting her was one of the only ways Miss Sandy knew to make her stop. I never did hit Ashley though. I couldn’t do it. Hitting her would make me just like her: someone who wanted to hurt someone else. I don’t think Miss Sandy really wanted me to hit Ashley though. She was just trying to teach me the importance of trying to stand up for myself. In many ways, it felt impossible. How was I supposed to stand up for myself when it felt like I didn’t have a friend who would stand up for me?

I’ve struggled with forming friendships my entire life. As a kid, I wanted friends more than anything. I think that is the reason I never told a teacher that kids were making fun of me. I became afraid that once I told a teacher, the people who picked on me would call me a “tattle-tale” and the other kids would distance themselves even more. Because I was so physically different from the other kids in my class, all I wanted was to feel like I fit in. In my early friendships, many of the people who became friends with me were my friends out of pity. Even though they didn’t specifically tell me that, I could tell it was true. I could tell by the way they looked at me that they felt sorry for me. When I was young, I kept those friendships anyway because all I wanted was a place where I felt like I belonged. Many of those friendships didn’t last long though because most of the people who had been spending time with me left when they got tired of pretending to be my friend.

It wasn’t until I became friends with a boy named Tommy in first grade that things began to change. Tommy was the first person to visibly stick up for me. He confronted the people who picked on me, telling them it wasn’t okay to pick on someone who couldn’t help that she was different. Tommy’s friends laughed at him for sticking up for me, but he didn’t care. He stuck up for me anyway and was there for me no matter what. Tommy also saw the numerous people who became friends with me because they felt sorry for me. He knew how much that hurt me. Even though Tommy wasn’t disabled, he saw how I cried day after day when another person I thought was my friend just got tired of trying. Tommy’s presence in my life didn’t stop other kids from picking on me, but I began to feel a little less alone. Even now, I don’t have many friends. However, the few friends I do have are incredibly close to me, and I am happy to say that one of those friends is still Tommy.

When I was in fifth grade, I took a required PE class. In my PE class, dodge ball was typically the game of choice. Every week in PE, I was chosen last for dodge ball. I even remember one particular day when one of my friends, Allie, was the team caption. This made me excited because I thought: Yes, finally! I won’t be picked last because Allie will choose me since we are friends. The team picking began, and I waited with excitement for Allie to say my name. I looked towards her with a smile on my face, and my smile faded as I realized she was picking everyone else but me. Finally, it came down to Miranda, a girl who had just broken her leg, and me. It was Allie’s turn to pick, and I started to inch towards her. And then you know what happened? She chose Miranda over me! Miranda, the girl no one liked because she was so mean, and the girl who couldn’t even move as well as me because she had broken her leg. I couldn’t believe it!

As I got older, I thought the bullying would stop, but it didn’t. The summer after my sophomore year in high school, I attended a creative arts camp. One day I was walking back from a creative writing class, and out of the corner of my eye, I saw a girl named Lauren imitating the way I was walking. I turned to her and said, “Hey, what are you doing?” “Imitating the way you’re walking,” Lauren said. When I asked her why, she explained that she was supposed to observe people as an assignment for her theatre class. Even though I told her she hurt my feelings, Lauren didn’t listen. As I walked away, I watched as she laughed and continued to imitate me. I ran back to my room and cried, so sad and frustrated that I was still getting picked on. Even at an older age, getting picked on hurt just as much, if not more. Lauren knew what she had been doing. She saw how I cried in front of her, and yet she still continued to imitate me and laugh at me. I couldn’t understand why she would be so mean on purpose. I ended up telling a staff member about what happened, and she contacted the teacher to find out that it was never a class assignment. The next day, though, something good happened. Lauren did the one thing I never thought she would ever do: she said she was sorry.

Being bullied, either physically or emotionally, is hurtful for anyone, but it’s especially hurtful if someone bullies you for something you have no control over, like a physical disability. My bullying experiences have affected me my entire life. I remember the details of every bullying experience I’ve ever had. I remember how alone and broken they made me feel, and how it seemed like the bullying would never stop. Typically, kids in school try to be different because they don’t want to blend in with the crowd. For them, it’s important to stand out. In my case, I have always been incredibly different, and all I have ever wanted was to be normal. My differences have never stopped me from trying to be as independent and normal as possible though.  I have Cerebral Palsy, and I am a survivor.

Speaking at this event was an incredible experience. I was nervous to speak about my bullying experiences since they were a part of my life I had never verbally discussed before. However, it was such a relief to finally talk about being bullied, and it gave me a sense of closure. It was also wonderful to hear from the kids in the book club and answer their questions. One girl in particular asked what my best grade in school was and what was my worst. It truly made me smile because I realized how wonderful it is to hear questions from kids. They make connections many of us as adults seem to have lost as we have gotten older, or maybe kids are just never nearly as shy to ask whatever seems to pop into their head. Either way, it was a great evening. I have even been asked to come back to that same elementary school to speak to the fifth graders, and my contact information has been passed on to two other elementary and middle schools in Asheville. I suppose it’s time to make myself some “business” cards!

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Finding Determination Through Fear.

19 Oct

A few days ago I was talking with a friend of mine, and he asked me to explain my absolute worst fear in life. Though some classic answers popped into my head, like ending up alone and losing the people I love, I knew my absolute worst fear. I tried to say it, but couldn’t. I felt like I was about to cry. However, after a period of silence stretched over us like a blanket, I finally spoke.

“I’m afraid of the day when I’ll no longer be able to walk.”

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 21 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.

At the top of Max Patch (October 2013)

At the top of Max Patch (October 2013)

Janine Shepherd TED Talk: A broken body isn’t a broken person.

6 Dec

Janine Shepherd TED Talk: A broken body isn’t a broken person

Despite this TED Talk by Janine Shepherd being her story of recovery after getting hit by a truck during a training bike ride for the Olympics, it is also an incredibly inspirational story about the power of the human spirit.

Even though my Cerebral Palsy wasn’t something that “happened” to me and rather something I was born with, I can relate to so many of Janine’s feelings that she expresses during her journey of recovery. Despite Janine’s accident, she eventually finds something that allows her to find a new, if not better, dream. In many ways, I can relate to the idea of having a situation allow you to discover something you never thought possible before. No, my Cerebral Palsy is not an “accident,” but through the slow process of learning to accept it (as well as all the emotions that go along with it), I have discovered that I want to help others realize that they too can have dreams despite their disabilities.

Writing is and has always been my dream. Though there was a period of time that I took a step away from it, I came back…as all true writers do. I took a break from it because I realized I was beginning to feel as if I was writing for others instead of myself, which was taking the joy and love out of what I was doing. However, I’ve come back to it…in a much different way, but with so much more gusto. During the years of my surgeries and intense physical therapy, I did write about what I was facing. I came across the original copies of those stories last year when my parents were getting ready to move from my childhood home. As I sat on the bedroom floor of my childhood home, I was transported back into the mind of an 11-year-old girl who was feeling so many different versions of pain, and yet was still able to describe what she was feeling and seeing with uncanny accuracy.

Even though the early stories that I wrote regarding my surgeries lacked the level of understanding that I have uncovered over the last year, they have provided me with a way to remember the details. I often forgot how much we are able to take in during our younger years, and through reading my own life experiences through the eyes of my 11-year-old self, certain details came back to me: details that will do nothing but increase the level of authenticity within my memoir. Yes, the raw truth with which I wrote when I was going through my intense surgeries was hard to take in all in one sitting. However, it was necessary. Reliving it all is honestly what the process of writing my memoir and sharing my story is all about.

Maybe I will share one of those stories with all of you one day. But for now, they are for me. They have provided me with the perspective of my younger self, and there’s something truly special about having that ability. Incorporating the perspective of my younger self with the understanding I have now is just going to make the journey of sharing my story with the world even more powerful.

The Shrine Bowl of 2003.

25 Nov

Ten years ago, as I was riding back from one of my weekly physical therapy sessions with my mom, I received a phone call informing me I had been nominated to be the Shrine Bowl Queen. At the time, I wasn’t sure what being a Shrine Bowl Queen meant, and I didn’t know there was a football game that took place every year in the Carolinas hosted by the Shriners.

As months went by following that first phone call, I received more phone calls informing me I was a finalist and finally that I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. I didn’t know what to think. I was excited, obviously. However, I was confused as to how I’d been chosen. Apparently, as I later learned, I had been one of the few girls who had been chosen out of the thousands of patients who had been in and out of Shriner’s Hospital for Kids in Greenville, SC, over the past year. Though sometimes it still blows my mind that I was picked out of all the others girls that year, I’m proud. I was chosen because I had stood out. However, for once, I didn’t stand out because of my disability (since the majority of the kids at Shriner’s were disabled too). I stood out because someone saw me as one of the patients at Shriner’s who had faced a lot, but was still able to have a smile on her face and a lively laugh despite the pain.

Being named “the Shrine Bowl Queen” involved attending two required events. The first event was a parade that took place in Myrtle Beach, SC, in which I rode on a float (along with the Shrine Bowl King) to support the Shriners and the Shrine Bowl game that would take place in the Spring. The second event was the Shrine Bowl itself. Though I don’t remember the outcome of the football game, I remember being so incredibly nervous, but also extremely excited. As time passed during the first quarter, I knew the chance to make my appearance was getting closer and closer. Part of being the Shrine Bowl Queen (or King) involves going onto the football field during halftime of the Shrine Bowl to release a dove into the air. During this time, both the king and the queen each receive a trophy with their name engraved as well as a football that is signed by all the Shrine Bowl players of that year. Though I was excited about having the opportunity to walk out onto the field with the Shriners to release a dove, the thought of being in front of so many people gave me huge knots in my stomach. However, despite the nervousness, I knew that I would walk out onto that field. After all, I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. With all references of having a disability aside, that isn’t an opportunity that you simply walk away from.

I guess you could say that the Shrine Bowl of 2003 was one of the highlights of my time at Shriner’s Hospital for Kids. Though there were definitely some other exciting times that were connected with getting closer and closer to independence, the majority of those memories were layered with months of physical pain. However, the Shrine Bowl of 2003 didn’t include any kind of pain: physical or emotional. It just served as a day which now signifies that I was a patient at Shriner’s Hospital for Children, and I was a prime example of a girl who endured. Though there are definitely numerous moments now in which I’m able to look back on all that I have overcome, being chosen to be the Shrine Bowl Queen of 2003 was evidence that I wasn’t the only one who was able to recognize all that I had endured. Doctors, physical therapists, nurses, and others at Shriner’s who were responsible with making the Shrine Bowl Queen nominations knew it as well. They probably knew it long before I even saw myself as someone who could smile and laugh despite the continued presence of pain in my life.

Monday’s inspiration.

12 Nov

Life in general was cruel and offered only different types of voids and chaos. The only way to tolerate it, to have any hope of escaping it, I reasoned, was to know my own strength, to defy life by surviving it. -from Autobiography of a Face by Lucy Grealy

The finding place of my words.

20 Oct

“A tough life needs a tough language – and that is what poetry is. That is what literature offers – a language powerful enough to say how it is. It isn’t a hiding place. It is a finding place.”

The above quote is from Jeanette Winterson’s memoir, Why Be Happy When You Could Be Normal?, and when I came across it this morning while on GoodReads, it really stuck with me. Maybe it’s because I know after reading Jeanette Winterson’s memoir that she had a really tough life. Maybe it’s because I am reminded that even though I persevere and trudge on, I have a tough life. Like Jeanette, I have constantly continued to find myself not in other people or places…but in words.

However, I’m not referring to the idea that literature has acted as my only finding place. Although, I do believe that it all began with literature. At a young age, during the days that I would go inside my closet where I had pillows, blankets and a light, I’d close my closet door and pour over the words. I’d lose myself in the words that I thought only I felt: those words that signified loneliness, being different, feeling pain and not feeling like there was a place that I belonged. Over time, I found myself in those words as I realized that what I was feeling wasn’t just confined to my own situation. I saw myself mirrored in others who, though they didn’t have Cerebral Palsy, still felt some of the same emotions that I struggled with from the very beginning. Even though there aren’t necessarily specific literary characters that I remember feeling especially connected with, it never was about making specific connections. In terms of literature, many of us recognize pieces of ourselves in other characters, and the sense that we are able to relate to them on some level acts as a safety net, a blanket that keeps the cold out, even if only for a moment.

As I began experimenting with my own words and realizing that I too could express the emotions that I was feeling, my own words became my safety net. Even though other literature still had the same effect that it always did in terms of helping me to feel less alone, the discovery that I could use my own words to achieve the same effect was life-changing. Rather than immersing myself in literature that had pieces of myself woven throughout it, I created words that held every aspect of me. Instead of just bits and pieces, I was entirely present within my own words. Within my words, all the emotions were there, waiting to be uncovered. The loneliness, the fear, the pain, the tears, the feeling of being so different that there wasn’t a place that I fit. Within my own words, I made all the emotions visible. As I removed them from the dark places that they had been hiding in for so long, they became even more real. Instead of simply residing in my thoughts, they were given a heart, a way to live and breathe in an environment that was separate from me, and yet was an environment that I had completely created.

Today, not much has changed. If anything, my words have become much more authentic and honest. Instead of beating around the bush in terms of the emotions that I have felt and continue to feel, I have plunged right in. I’ve found myself spending hours sitting in the darkness of my emotions, trying to find the perfect way to give them life. Though uncovering every aspect of my emotions has been one of the hardest things I have ever done, my words continue to act as a finding place. I am the truest I have ever been to myself when I am writing. Because with words, I can’t hide. There’s nothing to hide behind. My words still reside in the place that they always have: inside me. Through giving them life and allowing them to breathe on their own, it’s as if I’m living in two places at once. I’m living my current life, but I’m also living in the words that are written down. If one day in the distant future you see a book by me on the bookshelves, I hope you find me there.

Natural beauty in a fractured world.

18 Oct

Driving on the Blue Ridge Parkway.

Sometimes it takes my breath away that I live in such an incredible place. However, more than that, it seems surprising that I’ve only lived here a year. When you consider how attached I’ve become to all the natural beauty that’s around me as well as the wonderfully accepting people who live in Asheville, you’d probably assume that I’ve been living here for years. Truthfully, that’s how it seems sometimes.

I’ve had very few times in my life that I could honestly say that I have completely loved the way my life seemed to be spanning out before me. However, I would definitely consider now to be one of those times. No, things aren’t perfect. Today just felt close to perfect. For instance, I got to campus 30 minutes earlier than I normally do on Thursdays just so that I could take pictures of the fall leaves that are finally fully bursting with reds and oranges, I went to my favorite used bookstore to buy Life of Pi (which I started on Tuesday while I was at work but wasn’t able to finish obviously), and then I just spent some “me time” driving around town looking at all the incredible natural beauty that I’m fortunate enough to see on a daily basis. So yes, today was pretty perfect.

I’ve always loved natural beauty. Since I grew up making frequent trips to the mountains and went camping and hiking with my family starting at a very young age, I guess you could say that it was pretty obvious that I’d become a mountain/nature girl. However, despite having all that exposure when I was young, I love it for all my own reasons (even though all the hiking and camping definitely helped). I love it because it shows that even through adversity, there can still be beauty. Yes, that’s cliché, but it’s cliché for a reason. I think nature in itself has always reminded me that there is something to smile about in every situation. Though it may be something small, like a red leaf that has landed on the asphalt in front of you, it’s reason enough to stop, take pause and breath in the beauty that surrounds such a fractured world. Even as I write this, it seems sad to think of our world as fractured. However, when you consider all of the bad things that happen in the world for unknown reasons, I think it’s an accurate description. Despite its fractured nature, there is something to love about the persistence of natural beauty. No matter what, autumn always comes. Even if things seem like they are falling apart around us, we can count on the seasons. We can count on looking out before us and being overcome with love for the mountains we call home.