Tag Archives: Inspiration

Changing the Face of Disabilities.

24 Feb

Last semester, I had a professor who I really connected with on a more personal level. Though we discussed my role as a student, we also discussed a role I didn’t think I could inhabit so fully: my role as an advocate, especially for those with disabilities. One evening following my night class with this specific professor, we discussed my life, my future, and all the many obstacles I’ve faced to get to where I am today. It was an incredible conversation, one in which I truly felt heard, and it’s something I will never forget.

Specifically, after much discussion regarding my Cerebral Palsy, my past of physical therapy, surgery, pain and hardship, my professor mentioned how she had been wanting to talk about my disability with me for quite some time but didn’t know how to broach the subject with ease. However, once I completed a project for her class in which I discussed the topic of disability discrimination, she knew I was comfortable and wouldn’t mind hearing any questions she had.

As we talked about my life and my future aspirations of writing my memoir and becoming a social worker, I slowly began to realize I had gained a mentor. I had gained someone who not only supported and believed in me, but someone who pushed me to look more closely at myself and my potential. Since I have only truly connected on a more personal basis with one or two other teachers throughout my life, this experience was incredible. It gave me a chance to open up, to share my life, in a way I wouldn’t have otherwise been able to do if I hadn’t had the courage to open up about my disability through a big research project which was presented to the whole class. Specifically, during our conversation, my professor said, “Amelia, you have the power to completely change the face of disabilities.”

I have striived to be an advocate for others with disabilities since as a kid, I wished I had had a kind of mentor who I could talk to about the difficulties of living with a physical disability. In my opinion, having the chance to talk to someone who had been there would have really helped me, so I long to be that person for others. Therefore, when my professor told me I have the power to completely change the face of disabilities, I was floored. I truly felt proud to receive praise of such a high honor. The simple fact that someone believed I had the potential to achieve something so lofty was amazing.

Recently, I thought about what my professor said last semester, and how great it made me feel. As I mentioned that conversation to a friend recently, she said, “Amelia, there’s something you don’t see: you already do change the face of disabilities.” I stared at my friend, confused, not understanding what she meant. She explained by saying, “You change the face of disabilities just by being yourself. You bring awareness to what Cerebral Palsy is. You provide special needs families with the hope that it’s possible to overcome incredibly difficult obstacles. But you know what the best part is? You overcome it all with a smile on your face the determination to keep going no matter what.” The wonderful thing is I didn’t see how I was changing the face of disabilities just by being myself. I imagined I wouldn’t be able to do that until I aimed to do something more tangible, something I could point to and say, “Yes, I brought about that change.”

It’s caused me to realize that maybe being an advocate and lifting others up has many parts. Maybe it doesn’t just involve the tangible changes we can point to with pride. Maybe it’s the little things too: the connections I strive to make with the families of children with special needs at my internship, the talks about CP and bullying I’ve given at elementary schools, and the connections I’ve strived to make with others with special needs through my blog.

Recognizing my abilities to change the face of disabilities definitely isn’t easy. Maybe it takes hearing it from others before I start to believe it. However, as I’ve been told, I’m already doing it just by being myself. As of now, there’s only one way to go in order to continue along this path: forward. I don’t know all the answers. I don’t know the secret to living life with a physical disability without letting it pull you into despair and self pity. But I do know one thing: All I have ever been is myself. Maybe that’s the only secret that matters.

Why I Love Working With Dying Children.

2 Dec

I read an article recently by a woman who teaches poetry and prose to dying children. Throughout the article, the author regularly mentioned how a certain little boy’s death would one day prevent her from ever returning to work. That little boy became another little girl who became yet another child. They all faced something we don’t talk enough about: death. Eventually, the author mentioned how this work contains so much sadness and fragility, and yet it is also the work she could never dream of walking away from.

Ever since August of 2013, I have been interning with Arts For Life, a NC-based non-profit organization focused on teaching art to children and families battling serious illnesses and disabilities. Specifically, I work with two populations of children: children undergoing treatment for cancer and other blood disorders and children undergoing physical, occupational, or speech therapy. I began this internship for a variety of reasons. However, the main one was due to my previous hospital experiences. As a child, I had to undergo three intense surgeries, which later included intense physical therapy, and I spent all this time in the hospital. During this time, the one bright spot in all the days of physical pain, tears, and uncertainty was the weekly craft nights. For one hour every week, I got to focus on making an art project rather than dwelling on how much pain I was in, which exercises I needed to do, or an upcoming surgery. Having a chance to put all my energy into something completely outside of myself helped to decrease some of my anxiety. Some of those nights, I dare say I might have even been happy. Due to my enjoyable experiences with art projects in the hospital, I knew I wanted to provide these same opportunities for other kids in the hospital.

Ever since I started teaching art projects to kids in the hospital, I have loved every minute of it. I love seeing the regular kids every week who have finally gotten used to me and will come up and just start talking. I love watching the kids burst with creativity, coming up with an alternative project I hadn’t even considered. I love seeing the smiles on their faces when they finish their project and run to show their parents. I love finding new ways to teach the children. However, more than anything, I love being able to take in all the different lessons they’ve ended up teaching me without even knowing it.

They have taught me the true meaning of strength. They have taught me what it means to not let an illness define you. They’ve taught me how “art” and “perfect” are rarely in the same sentence, and that’s perfectly okay. More than anything, they’ve taught me the importance of noticing the small things. One little girl I know is battling cancer, and yet she is one of the happiest little girls I know. She smiles, she laughs, and she plays. Most importantly, she does one thing I believe we often forget. She notices every moment: every smile, every time of laughter, every speck of blue sky. She absorbs every single piece of life, soaking it all in. I try more and more each day to live like her, but I’ve got a long way to go.

Numerous friends have asked me how I am able to be around kids who are dying. And you know what my response is? “How could I not?” These kids need me. They need the chance to be able to fully express themselves. They need a positive person in their lives who can bring something good into their hospital experience. They need someone who cares. A few years ago, I never imagined that person could be me, and yet, here I am.

I have yet to lose one of the children I teach. The more I read the article written by the woman who teaches poetry and prose to dying children, the more I’ve begun to understand that we all deal with death in our own way. How I react to losing a child I teach may not be the same way one of the child’s nurses might react. That being said, the important thing to remember is even if I lose I child I teach, there are still tons of other children who need me. Though one day may feel quiet as I mourn the loss of a particular child I cared for, there will be more children coming to clinic the following day, and I need to be the best I can be for them. Being sad around them isn’t my job. If I’m sad, they’ll get sad. That’s why positivity is so important.

Teaching art to children with serious illnesses and disabilities is not easy, but it is the first thing I’ve ever done that’s given me a deep sense of purpose. Seeing the smile on a little boy’s face means I was part of his happiness. Having a little girl cling to my leg begging me not to leave warms my heart more than she will ever know. I just hope one day these children will know how much they have changed my life.

Be kind, for everyone you meet is fighting a hard battle.-Plato

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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Being Bullied: The Effects that Can Last a Lifetime.

9 Oct

About two weeks ago, I randomly received an email from a woman who works at an elementary school in Asheville. She informed me she had received my contact information from the program director of Easter Seals in Asheville who spoke very highly of me. She then told me there is a book club at the elementary school, and in the book the children are reading, the main character has Cerebral Palsy. Based on the high remarks she received from the Asheville Easter Seals program director concerning me, she asked if I’d be willing to come speak to the third through fifth graders about my experiences with CP. Specifically, she asked if I could speak about my experiences of being bullied during my school years.

The email was completely out of the blue, and I was stunned. To have received this kind of opportunity without searching for it is incredible, and I am excited for such a wonderful opportunity. However, the tricky part comes with the focus of the talk: my bullying experiences in school.

It is safe to say my bullying experiences were the worst part of my childhood (excluding my intense surgeries and physical therapy, obviously). As a child, I could not understand why I was being targeted out of everyone in my class. I understand now that children are especially curious about those who are different from them. However, I didn’t know why it always had to be me. During those times, I also didn’t understand why I was so different. All I wanted was to fit in, and by getting bullied I stuck out even more.

I got my hair pulled in kindergarten because I had no way of running away, I got pelted with a dodge ball in middle school because I couldn’t move away from the ball fast enough, and every day in gym class, I was picked last. Though I know those experiences helped me to develop a thicker skin very early on in life, many of the experiences were just plain cruel. There is no other way to say it. They resulted in me coming home from elementary school crying to my parents on a daily basis. I cried over more than just the bullying though. I cried over hating I was so different. I cried over not being able to fit in because my experiences were so different from most of the other kids my age. I cried because it wasn’t fair. None of it was fair. I was a nice kid. I smiled at other kids, I laughed with them, and yet I still didn’t ever really fit in with them.

The complex social aspects of school are difficult for any kid. However, they are especially difficult for any kid who may be a tiny bit different from their peers. I only hope to try to convey this to the children I’ll speak to at the elementary school in Asheville. I don’t want to berate them or tell them to stop being mean. After all, they are kids. Kids are curious, especially regarding things they don’t fully understand. I only hope to explain how children with disabilities should be treated just like any other kid. Yes, they are different, but pointing out their differences and excluding them from activities because they are a little bit unique only makes it that much more difficult for them.

Despite growing a tougher skin due to being bullied, I have carried my bullying experiences with me ever since I was a kid. I remember the specific moments in detail. I remember who targeted me, and I remember exactly the way I felt when I came home and cried. I know now that many of my bullying experiences were not intentional. They were just moments of kids being kids. However, that does not mean I still don’t remember the feeling of walking into gym class with my fingers crossed, silently hoping I wouldn’t have to be pelted with a dodge ball by the one girl who always got so much satisfaction out of being the one to hit me.

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.

A conversation with my younger self: Part 2.

1 Jul

Eight months ago, I wrote a blog post titled “A conversation with my younger self.” In this blog post, I talked with my 7-year-old self and tried to tell her the things I imagined she needed to hear at the time. Things like, “You are not alone,” “The pain won’t last forever,” and “I love you.” More recently, I’ve come to the understanding that I need to become closer with my younger self. I need to sit down and talk with her again to find out what she needs. By doing this, I might be able to figure out what it is I need right now. That younger self is a part of me (though she may currently feel very far away), and I think she might need me as much as I need her right now.

I’m standing in front of a hospital room door in a place that is all too familiar: Shriner’s Hospital for Children in Greenville, SC. I spent enough time here as a kid, and the familiar sights and sounds are a tad too close for comfort. However, the distant hum of the air hockey table in the lobby brings a small smile to my face as I remember how, on the good days, I played as many games of air hockey as I could before becoming too tired.

Nurses walk past me bringing various things to other children on this hall. I look at the door I am in front of, knowing I am meant to go inside. I place my ear against the door to try to hear any kind of conversation, but all I hear is crying. I take a deep breath to try to calm my nerves. My younger self is inside that room, and she needs me. Before I can talk myself out of it, I turn the knob and walk in.

Upon entering the room, it appears that all the lights are off. It’s not until I make my way to the far left corner of the room that I see a fiber-optic Christmas tree radiating different splashes of color onto the wall behind it. My younger self is curled up onto her side and watching the colors change. She holds her stuffed hippo tightly against her chest, her arms constricting and relaxing around him as she cries.

“Hey Amelia,” I whisper as I stand at the end of her hospital bed, hoping I don’t startle her.

She looks up, blinking a few times before making the connection, and then turns back towards the red and green lights.

“You told me before that it would be okay,” she says.

I look down at my feet, remembering the first conversation we had in the park when she was 7. I didn’t know how to discuss it then, and even now when she’s 12, I continue to find myself at a loss. How is it possible to discuss a pain so raw and true while at the same time trying to be comforting and reassuring?

“I’m sorry. I didn’t want to scare you,” I tell her.

She glances quickly towards me, and before she turns away, I notice the tears in her eyes. I sigh, knowing her pain so well. I walk around to the side of her bed, pulling up a chair so that I can sit beside her.

“The nightmares are almost as bad as the actual pain, and then the spasms wake me up, and it’s like I’m living the nightmare,” she says.

“I know it’s scary, and I know it hurts. But it’s okay to cry. I’m right here.”

Without thinking, I place my hand on her head, carefully brushing back her curly brown hair so that I can see her face, her blue eyes. As I look into the eyes of my 12-year-old self, I see it all: the pain, the loneliness, the fear…and for a few seconds, I feel every piece of it all over again, even the spasms that seemed to come out of nowhere. I touch my own scars as I remember, and it isn’t until I feel the pressure of her hand wrapping around my wrist that I look up. She’s staring right at me, and her hand is wrapped around my wrist so tightly that I can tell she’s trying to picture the long road ahead of her.

As her eyes move back towards the changing lights on the fiber-optic Christmas tree, I crawl into her hospital bed, allowing her body to curl up against my own. As she holds tightly to my hand and we stare together at the lights changing from red to green to blue, I hug her against me, remembering how much I longed for an older sister who would hold me during those scary and lonely nights of spasms and nightmares.

Own your story.

20 Apr

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.-Brene Brown

When I came across this Brene Brown quote a few days ago, I couldn’t help but realize how much it applied to my certain circumstances. Not just the overall situation of living with Cerebral Palsy, but the more recent circumstances of realizing that I must now face the emotions which resulted from my recent return to physical therapy. Though it would be so much easier to resist thinking about the emotions and memories that returning to physical therapy brought up for me, I know that I must face them if I’m going to be able to move forward.

Throughout my life, I have heard people tell me how awesome it is that I don’t let my CP define me. According to my CP doctor, I “make it look easy.” Though I do understand that most people are trying to compliment me, it’s also hard for me to believe them in the full sense of the phrase. Though I don’t ever introduce myself as “the girl with CP,” I often wonder if that’s what others are thinking, specifically people I have just met. Overall, I try not to let myself focus too much on all of the difficulties it brings, because if I did that, how the heck would I still be able to find joy in the little things? However, at the same time, my CP affects me on a daily basis. Every day is hard, and every day I am reminded of how different I am from those around me. At the same time, I am reminded of how far I’ve come, and that’s where “owning my story” comes in.

Though I began writing my memoir in order to help myself come to terms with what I’ve faced and to help others in similar situations, I have also just wanted to shed a light on just how many of us are struggling in ways people may not truly understand. Putting all the benefits and support aside, “owning my story” through writing about it and essentially saying “Yes, this is who I am, and I am damn proud” has been the most frightening, scariest, most frustrating and overall hardest thing I’ve ever done. In all actuality, it sucks, but it’s helping me. Truthfully, it reminds me of the idea that you’ve got to hit rock bottom before you can truly understand your own strength. It’s cliché, but it’s also true. In many ways though, I feel as if trudging through this first draft of my memoir is similar to hitting rock bottom, over and over again.

Despite the frustrations of “owning my story,” it’s my way of being the voice of so many others who aren’t able to express what it’s like living with a disability. If writing my memoir means I can give a voice to a few of those people, then I will plunge into the darkness of it. Just because there are people who aren’t able to express the emotions connected with what they have experienced doesn’t mean that they shouldn’t have a chance to still be heard. If anything, all of those people deserve it a little bit more. After all, every one of us has so much to learn from each of the people we come into contact with, so why not start by owning the experiences we’ve faced, no matter how scary and painful?

Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

Dedicated to my three favorite fellow bloggers.

25 Dec

After yesterday’s post on all that has happened over the past year regarding beginning my memoir and dealing with the emotional side of digging up all the memories from my past, I know that I have the support from my fellow bloggers to thank. Though I do want each and every one of you to realize how much I appreciate all the support you have given me since I entered the world of WordPress in November of 2011, there are three specific people I’d like to thank.

  1. Arianna of Arianna’s Random Thoughts: Arianna’s blog consists of posts she shares to empower people and help them be the best they can be. In the beginning, I received huge doses of inspiration from her posts, but it wasn’t until I truly started getting to know Arianna herself that I began to truly learn from her. I think the most wonderful thing about the friendship we have formed through blogging is how we have ended up helping each other. Since the very beginning of my blog, Arianna has been a huge supporter of my decision to share my story, and there have been many nights spent talking over Facebook chat about life, the difficulties we face, and what it means to overcome it all. Though Arianna has told me I have helped her to become more vulnerable in her writing, she has helped me in the same way. It means so much to know there is someone who not only supports and reads my writing, but someone who is willing to sit up with me at night (though she lives on the other side of the country) just because I may be having a bad night or may need someone to bounce writing ideas off of. So thank you, Arianna, for being no one but yourself and for helping me find the strength I have had all along. Your friendship means so much to me.
  2. Cassie of Books & Bowel Movements: Cassie’s blog is centered around a topic we both love more than life itself: books. When I first came across Cassie’s blog, I’m pretty sure I laughed for a solid minute and a half as I stared at the title of her blog (Books & Bowel Movements). Now, though sometimes I still giggle when I come across the title of her blog, it’s become normal. Though it still is funny, it’s also just….Cassie. I have loved having the opportunity to connect with Cassie. Often times, I feel like her love of books and my love of books holds a similar weight, and it’s so much fun to come across people who love the concept of reading, books, bookstores, words…and everything bookish…as much as I do. In Cassie’s most recent post, in which she discussed the amazing feat of reading 120 books this year, this is how she describes readers (and this is yet another reason why I love Cassie. Her way with words is truly amazing): “Like oak trees that carry equators of history in one chopped stump, we carry words.  We are the people that will carry history all the way to our grave stones.  When we’re asked by grand children, small children, dwarves in the woods, about our world we’ll be able to tell them with eloquence and grace whether we start with “Once Upon a Time” or “It was a dark and stormy night.”  We carry the voices of generations in our wombs and for longer than nine months, for life times.  We’re women made of hair, water, and syllables.  They kink in our hair, leave freckles on our cheeks, sunburns, hang nails, wrinkles at the bed of our palms.  We’re not made of water, fire, earth, or wind, but stories, paragraphs, sentences, ink.  The next time you wonder why you picked up that book instead of turned on that television, remember the gift that you’re bearing because not a lot of people are given this gift.  We’re the minor few.” Cassie, your words are completely and totally beautiful, and they never cease to amaze me. I truly can’t wait for our book reading party in the future! Thank you for the amazing friendship you have given me. I truly appreciate your support and friendship more than you know.
  3. Mackenzie of whatever, gatsby: When I first came across Mackenzie’s blog where she described herself as a “twenty-one year old floridian prancing about the northeast in knee socks,” I knew we’d be friends. From Mackenzie’s posts where she shares her favorite bits of poetry by Anne Sexton, Sylvia Plath, and Emily Dickinson to her frequent playlists of her current music and her many adventures around the city of Boston, I have begun to realize the critical importance of embracing all that I am, no matter how weird or awkward that true self may be. I owe it to Mackenzie for helping me realize what it means to truly be myself. I don’t know if anyone has ever said the statement, “Weird is beautiful,” but it’s so true and so fitting for life in general these days. I have no doubt that Mackenzie would agree. I also love reading of her many Boston adventures, and since Mackenzie loves to travel as much as (and probably more than) me, I’ve begun to understand that if I want to go somewhere, I should just go while I’ve got the chance. Life is just too short to allow those kinds of opportunities to pass you by. I came across this quote by Anais Nin that seems to sum things up (and Mackenzie, I thought you’d appreciate it): “I am an excitable person who only understands life lyrically, musically, in whom feelings are much stronger as reason. I am so thirsty for the marvelous that only the marvelous has power over me. Anything I can not transform into something marvelous, I let go. Reality doesn’t impress me. I only believe in intoxication, in ecstasy, and when ordinary life shackles me, I escape, one way or another. No more walls.”

In conclusion, I appreciate the three of you so, so much. You have each become wonderful friends to me, and I am so grateful for the laughs, the support, and the love. From your love of books and the printed word in general, I have found the bookish friends I have been searching for all of my life. Little did I know that you each resided in this supporting, loving, and beautiful community of WordPress. Thank you for giving me the sense of belonging I have searched for throughout my entire life. I love each one of you so much, and I am so incredibly happy to call you my friends. 🙂

Advice from Rumi.

16 Dec

“Raise your words, not voice. It is rain that grows flowers, not thunder.”