Tag Archives: Parents

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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To those who taught me to dream.

2 Jul

When I was little, I wanted nothing more than to be a ballerina. Around Christmastime, my grandmother would take me to see The Nutcracker at the Koger Center. As I sat up in the balcony in my checkered dress and patent leather shoes, I stared with admiration at the character of Clara. I imagined myself twirling around in my own leotard with a toy nutcracker in my hands, lost in the music and a dance that was all my own. When I got home from seeing The Nutcracker, I’d put on my leotard and tutu, grab a favorite stuffed animal at the time, and twirl in circles to the music only I could hear.

It was in those moments, in the safety of my childhood bedroom, that I began to dream, imagining doing things I knew I wouldn’t be able to do in reality due to my disability. I imagined dancing with a grace I had seen only in ballerinas. I put on my ballet shoes and twirled until my unstable balance got the best of me and I fell to the floor in frustration. I even remember asking my parents if I could take ballet lessons, determined to learn how to create the beauty I had seen in the character of Clara. The opportunity never arose though, simply because I didn’t have the balance to be a ballerina. Despite walking on my tiptoes, twirling around in circles on those same tiptoes was out of the question.

As I got older and I filled my head with more realistic dreams, I never stopped imagining doing the things I’d never be able to fully experience. I thought of dancing to the music of my world. I imagined running down the street and feeling the wind on my face as I chased the orange and red sunset I saw in the distance. I pictured myself climbing the huge oak tree in my backyard, wanting nothing more than to find a sturdy limb I could sit on so I could rest my back against the tree’s broad trunk and escape into my favorite book. The creative imagination I possessed placed me right into the worlds I dreamed, though I knew I was so far away from actually experiencing them.

I am forever grateful to the people throughout my life who have encouraged my imagination and dreams. Though I was constantly reminded by other kids around me of the things I was unable to do, so many of the adult figures in my life understood the importance of believing in my creativity. Because of those individuals, I have learned what it means to still hope and strive for the things that still seem a bit out of reach. Through my ability to dream, I developed a determination that has propelled me through my life, despite stumbling again and again. While I may not have had the chance to be a ballerina who twirls endlessly with the grace of a perfect melody, I have sung my heart out at a voice recital, capturing an entire room with the simple sound of my voice. I have participated in theatre productions, achieving my moment in the spotlight by being Glinda the Good Witch in The Wizard of Oz. I have written of specific moments of pain during the months following intense operations, creating the same tears in the eyes of my readers that I possessed during my moments of defeat. Though I may not have had the chance to live the experiences I longed for, I have continued to move to the song of my own life, continuously grateful to those who taught me to dream and create my own destiny.

The femoral derotational osteotomy: The longest marathon.

14 Jan

I was born with Cerebral Palsy. In my case, I was born with my femurs angled inward and my hips tilted forward, and my angled femurs caused my feet to point in as well. Therefore, as a kid, when I would walk, I’d end up tripping over my feet, which made it harder for me to walk properly. On October 8, 2001, I had my first intense operation, a femoral derotational osteotomy. In some ways, it doesn’t seem like that long ago. The femoral derotational osteotomy was an intense operation in which the surgeons straightened out my femurs in order to allow me to walk straight. Rods were also used in order to keep my legs straight, but they would be taken out the following year once everything had fully healed. Even though the operation itself isn’t something I remember since I was asleep, I do remember the conversation I had with the OR nurses before I was put under. When the nurses looked down at me on the operating table and asked me to tell them about my animals, I proceeded to include the names of my pets at home as well as the names of all of my stuffed animals (and I had a lot). The nurses just smiled. They didn’t seem to mind.

When I woke up in the ICU, I had on two long-leg casts that were connected by a bar in the middle. I also had an epidural, so I couldn’t feel the full extent of my pain. However, those first few days in the ICU were spent not eating as much jello as I could manage, but continually getting sick from the anesthesia that had put me under during the operation. Trust me, having a nurse come over with a tube to suck the vomit out of your throat is completely disgusting, but it’s better than having the full taste of vomit in your mouth by waiting for it to come all the way up. Though I did eventually leave the ICU and Shriner’s after my first intense operation, I had to keep those long-leg casts on for the next 8 weeks, and during those 8 weeks, I became completely dependent on my parents. They had to help me shower, help me go to the bathroom, and help me change my clothes among many, many other things. It was only the beginning of the very long road to gaining my own independence.

In many ways, the femoral derotational osteotomy was the beginning of a marathon that would last much longer than just a few days. It was the beginning of the complete hell I would go through over the next 6 years until I reached the age of 15. By the age of 15, I had endured 3 intense surgeries, 15 years of physical therapy, and more pain that I ever thought possible. However, despite all of that, I persevered. I pushed through because I knew it was the only thing that would allow me to be independent. In the beginning, after that first operation, my parents were helping me do everything. I was completely dependent on them. However, by age 15, I was not only independent, I was gearing up to leave home the following year to attend an all-girls’ boarding school in North Carolina. Though leaving home was and always will be one of the hardest things I’ve ever done (not including my operations and all the intense physical therapy that followed them), it was also the best decision I ever made for myself. As with so many other things in my life, I’ve learned from it all, but more than that, I have been able to better understand the person I am supposed to become. Though I would have never imagined that I’d be using experiences from my own life in order to relate to and lift up other kids with CP and other disabilities, it’s beginning to feel like a permanent place I belong.

In the right hands, a memoir is the flecks of gold panned out of a great, muddy river. A memoir is those flecks melted down into a shapable liquid that can be molded and hammered into a single bright band to be worn on a finger, something you could point to and say, “This? Oh, this is my life.” Everyone has a muddy river, but very few have the vision, patience, and talent to turn it into something so beautiful. That is why the writer matters, so that we can not only learn from her experience but find a way to shape our own. -Ann Patchett, afterword of Autobiography of a Face

NaNoWriMo (Day 1): Different kinds of love.

1 Nov

My parents are very different people. I guess you could call them polar opposites in a lot of ways. However, they compliment each other, and I also know that without them being very different, I would have had an even harder time dealing with the struggles related to my Cerebral Palsy throughout my childhood. In connection with my parents being very different, they also have very different ways in which they show love. I like to think that I got lucky and am able to show others how I feel through how each of my parents behaved (and still do behave) towards me regarding love.

My mom has always showed affection through tough love. During my childhood years, I couldn’t understand that this was even a form of love. The toughness hurt. It made me cry. Most days, it made me feel like I wasn’t good enough. Especially concerning the exercises that I had to do in order to get stronger and be more independent, my mom was the pusher. The goal was to get me to be more independent, and in my mind, I felt like that is all she could really see. For much of my life, I didn’t want a tough love mom. I wanted a mom who would show me she loved me in the obvious ways. I wanted a mom who would see me in pain and instantly hug me and rock me, continually telling me that it would all be okay. I wanted a mom who would welcome me into her arms, welcome me into the place that I fit and would always belong. I didn’t understand how my mom could push me to complete all the really painful exercises and not even be phased when the tears began to fall. I didn’t understand why she didn’t tell me she loved me more often. For much of my life, I doubted my mom’s love for me. Since we were often butting heads, I couldn’t allow myself to see the ways in which my mom was showing me love. I just knew that I was in pain, and instead of making it stop, she was making it worse. In my mind, that was so far from love. Though my mom was pushing me so that I could be a more independent person and fight through what was bringing me down, I couldn’t see that. All I knew was that what I did end up doing never seemed to be good enough. As soon as I completed one exercise, using all my strength to push through the really painful parts, there was another exercise to do…and another after that…and another after that. It was a never-ending stream of pain and tears, and at the center was my mom, telling me to bend my knee up just one more time.

My dad was the complete opposite. He has always been incredibly sympathetic and has always showed his love for me in ways that I could relate to. For instance, I remember the first few weeks I was home after my first surgery. Throughout those weeks, I was in an incredible amount of pain, which often made it really difficult for me to sleep at night. Therefore, I’d call out for my dad, and even though it would take some time for him to hear me, eventually he’d come to my room. In those moments, there was nothing he could do to ease my pain except give me some pain medication. However, the ability for him to just sit at my bedside and brush my hair with his fingers was enough. Though I was still hurting, it was obvious that all he wanted to do was take away my pain. I could tell from how he looked at me that it was so hard for him to not be able to do anything. However, in those moments, his love for me was obvious. The simple fact that he just came to sit beside my bed through my tears said so much. Even if he never said anything to me, I could feel the love that was held in those moments.

My dad has always been an incredibly empathetic person, and I know that’s where I get my ability to empathize with others and relate to the pain that other people have felt, though I may have not felt that specific kind of pain myself. Though my dad has always been empathetic, that doesn’t take away the fact that for my entire life, I have longed to have someone to understand my pain. I’ve wanted someone to be able to come up to me and say, “I know exactly how you feel.” However, in a situation such as mine, that’s not an easy thing to find. My dad’s love for me has filled many of the gaps that a person who knew my pain normally would. Though he doesn’t know what my pain has felt like it, he (as well as my mom) lived through it with me. They were with me every day, watching as I went through unimaginable pain that they couldn’t take away no matter how much they longed to do just that. Also, since I’ve always been incredibly close with my dad, he’s grown to understand many of the parts of myself that I don’t show to many people. Since we’re so similar, he probably knows me better than anyone else. In so many different ways, we understand each other, and my ability to be incredibly open and honest with my dad has allowed us to have the kind of parent-child relationship that I know many people wish they could have.

In much of my teenage years, during the times that I was going through intense physical therapy but also beginning to become my own person, I began to doubt my parents’ love for me. Though I have no doubt that my parents had told me they loved me countless times before, I feel like my own low self-esteem impacts the way I imagine others feel towards me. Though that may seem sad, I think it’s something that any of us who are different struggle with. In a childhood that is filled with a great deal of emotional and physical pain, where is the love? How can we feel like others love us if they are pushing us to do things that are incredibly physically painful? Isn’t love supposed to be a warm feeling? Isn’t it supposed to be the kind of emotion that has no boundaries or limits and is able to lift us out of the hardest times in our lives? Doesn’t love conquer all? Regarding my ability to doubt that others love me, I have realized that I have always been one of those people who needs reassurance, which I feel like is another trait I get from my dad. Therefore, even though I have friends and family who may tell me they love me on a regular basis, I often wonder when I will allow myself to believe them. I wonder how long it will take to stop doubting how much they care. I wonder…I wonder…I wonder.

Though my parents showed their love to me in very different ways, they’ve always complimented each other. If I had 2 parents who demonstrated tough love or 2 parents who were incredibly soft, caring and empathetic, I wouldn’t have been able to make it through my struggles. Though sometimes it’s still hard that my parents show love in 2 very different ways, it’s helped me define my own definition of love. It’s also helped me understand that since my parents have two very different personalities, the way they show affection is definition, and that’s just the way it is. However, it’s helped me see that there isn’t just one way to show someone who you care about them or love them. Though I am only 20 and I still have a lot to learn regarding love, I know that the love I have received from my parents has shaped me into how I show my love to other people. Though I don’t solely demonstrate tough love or solely demonstrate softness and empathy, I know that having a mix of the two is probably the best way to be.

[Word count: 1380 of 50,000]