Tag Archives: Physical Disability

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.

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)

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.

Try like hell.

27 Sep

Sometimes I wonder what my life would have been like if I hadn’t been born with Cerebral Palsy. I wonder if I would have decided to be a dancer or maybe an athlete rather than an aspiring psychotherapist and a writer. I wonder if I would have spent my childhood climbing up into trees to read books rather than becoming all too familiar with hospitals, surgeries, and physical therapy. I wonder if I would have had a big group of friends throughout middle school and part of high school rather than coming home every day crying because I had no friends due to my differences. I wonder if I would have spent my time hiking beautiful mountains rather than having to wonder if I’d have the stamina to make it up the next hill.

Earlier this week, my dad said, “Sometimes I wonder what it would have been like if you hadn’t been born with Cerebral Palsy. You could have had a wonderful life. You wouldn’t have had to struggle so much.” Though in the moment I wanted to interject and say I have had a wonderful life, I couldn’t do it. I couldn’t say the words. As soon as I wanted to say something, the memories all came back. I saw myself sitting in a hospital bed screaming out in pain because of the spasms that wouldn’t stop. I saw myself in kindergarten getting my hair pulled every day because I was the one child on the playground who was unable to run away. I saw myself shaking as my classmates pelted me with doge balls during middle school gym class because I couldn’t move away quickly enough. I saw myself crying as a girl I didn’t know imitated the way I was walking and then said she did it because it was a “class assignment.” I see myself at 21, struggling with depression and still not being able to truly accept and be comfortable with having a physical disability.

You would think after 21 years I would be used to the cards I’ve been dealt in this life. The truth is, I’m not. Every day of my life is a challenge. On top of having to convince myself to go to class when my back and my muscles hurt, I have to try to convince myself to get out of bed and face the day even though I’d rather sleep to escape the overwhelming sadness and hopelessness that hovers over me like a dark cloud.

I’m trying to learn to hold on to the good moments, though they are few and far between. The color of the changing leaves during autumn, the few (but true) friends who have been by my side through all of this darkness, a dad who has never given up on me, a smile from a child fighting cancer after completing an art project I taught her. In the darkness of depression, it is very hard to remember those good moments, especially when the bad days outnumber the good. However, I’m trying. It’s all any of us can really do. We try like hell, and hope against all odds that we can kick this life just as hard, if not harder, as it kicks us every single day.

Stuck between ability and disability.

15 Jul

Though I have Cerebral Palsy, I’m very much of an inbetween. I’m not fully able-bodied, but I’m not severely disabled either. I know what it’s like to feel as if I am holding other people back due to the things I am unable to do. However, I also know the feeling of being held back myself by those who are more severely disabled than myself. It’s not as if I am unable to do everything. It’s just that I may have to adapt the way I do certain things in order to participate in them like everyone else. Because my abilities fall in between the abilities of able-bodied people and the abilities of people with more severe forms of Cerebral Palsy, I’ve never felt completely comfortable in either group.

When I was a freshman at Wofford College, before I made the decision to transfer to UNC Asheville, there was an older disabled man who worked on the staff who had Cerebral Palsy. Though I never asked him if he had CP, I assumed he did because the way he walked was so similar to how I walk. I noticed him on campus. My eyes would catch his gait, and I’d look away, feeling as if I was seeing a reflection of myself. Again and again, I caught myself doing the same thing I hated in others: visibly looking uncomfortable.

One night while having dinner with friends in the cafeteria, the disabled man came over to our table. He looked at me, introduced himself, and commented that he had wanted to speak with me for a while. Though I acknowledged him and said hello, I became incredibly uncomfortable and quickly turned back to the conversation my friends were having. Eventually, the man walked away. Though the situation shouldn’t have freaked me out, it did. I hated that he approached me because of my Cerebral Palsy. I had wanted to fit in with my friends, and his presence made me feel as if I stuck out.

My perceptions have changed a lot since the experience that night at Wofford. Since then, I have started a blog, written about what it’s like to live with Cerebral Palsy, and have become much more open about discussing my experiences related to my physical disability. Though I don’t think fondly on my reaction towards the disabled man at Wofford, at the time, I couldn’t have even fathomed beginning my journey of self-acceptance. I was so far from even starting to feel comfortable in my own skin. Back then, I felt as uncomfortable with myself as I felt every time I saw the disabled man on campus.

Being stuck between fitting in with able-bodied people and those who have more severe forms of CP is continually frustrating. I do not necessarily have what is termed as “mild CP” because my CP noticeably affects my walking and my muscle tone. However, I am able to walk independently without assistance, which is not always the case for those with more severe forms of CP. I have recently joined a Facebook group for people who have CP because it’s becoming more and more difficult to describe the concept of chronic back pain and other frustrations to those who can’t even begin to understand what it’s like living with a physical disability. Therefore, I thought I’d benefit from a “support group.” However, within the group, I am reminded again of how much I don’t fit when I see the posts about power chairs, the frustrations of not being able to drive or not being able to live independently (since I am able to walk, drive, and I’ve lived on my own since I was 16).

On the good days, I’m comfortable with my able-bodied friends. On the bad days, when my back pain is worse than normal and all I want to do is cry, I wish I knew someone who was also stuck between ability and disability who understood my frustrations because at least we could be stuck together. However, this “stuck phase,” aggravating as it may be, is where I am, and there’s not much that can be done to fix that. I can’t make myself more able-bodied (no matter how much I wish that were the case), and I’d never choose to be more disabled than I already am. I’m just me, and even though it’s really hard, I’m trying to learn to be okay with that.

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?

The Disability Fight: It Never Ends, Does It?

23 Jan

I am still incredibly self-conscious in regards to the physical aspects of my disability. Though I may have reached a point where I am able to talk about my disability with more ease than ever before, I still haven’t developed a sense of confidence when it comes to the physical differences related to my Cerebral Palsy. I shrink away from the differences, silently wishing they were a part of someone else and not me.

When I see the severe curvature of my lower back in a mirror, I cringe. In the summer, when I give in and put on a bathing suit because of the heat, I hate to look down and see the scars on my legs from my intense surgeries. In just one moment, I am transported back to my intense surgeries, all the physical therapy I endured following those surgeries and the nights I’d wake up screaming and in tears because of the pain that seemed to come from everywhere all at ounce. When I am about to walk inside of a building and I see the reflection of myself in a door, I look away. I don’t have to look at my own reflection to know the way I’m swaying side to side as I walk with a visible stiffness in my legs. I don’t have to look at my reflection to know the way my knees still knock inward and the way I’m up on my tiptoes despite the operations I had to straighten my femurs and try to decrease the spasticity in my legs. I can formulate a picture in my head of myself walking that’s so accurate I want to scream. I’d give anything to not know every single detail of how the way I walk is different from how the average person walks. A part of me hates myself for my self-consciousness in regards to my walking. I spent my entire childhood going through intense surgeries and 15 years of physical therapy to reach a point where I could walk on my own without assistance and be as independent as possible. It’s not that I am not proud I can walk. I am. I know I should be jumping up and down on a daily basis because I am able to walk. But I don’t. I just can’t make myself do it.

If you were to ask me whether I’d choose to have CP over not having it, I’d say I’d rather have it because it’s made me into a much stronger person. But if you were to ask me if there’s anything I’d change about myself, I’d tell you that all I want is to look like everyone else. I don’t want to always be the target of stares from toddlers, and even adults, in grocery stores. I want to be able to stop having to cringe at the severe curvature of my lower back or look away from my scars and the pain I remember and still feel. I want to stop having to look away from my reflection because my knees are knocking together and I’m up on my tiptoes. In a way, that’s what all of the physical therapy and surgeries were for. It was to get me as independent as possible, or as close to being like everyone else as I could get. But even with all that work, I’m so far from being where I wish I could be. My balance sucks. I can’t go up or down stairs without a railing. I can’t put on a pair of pants without needing to be in a seated position. And on the days when I think of the things I can’t do and I’ve fallen more than what is normally expected of me during the course of a day, I cry. I cry because it is so, so hard to keep fighting this. No, I am not faced with a life-threatening health problem, so I’m not fighting for my life necessarily. But I’m still fighting just as hard. And it takes every ounce of strength in my body to wake up every morning and make the choice to face it all…again and again, even though all I really want to do sometimes is pull the covers over my head and hide.

I’m back!

7 Jan

No, the break wasn’t long. However, yes, it was needed. Though I’m still in the stage of adjusting some things about my current life that had previously been on the back burner, I realized that I didn’t want this blog to be kicked to the back of my mind like so many other things. This blog has helped me too much to be at any place other than the forefront of my thoughts (right alongside academics, friends, and family).

One of my goals (not resolutions, but goals, or something I expect to stick around and even grow) for this year is to complete a rough draft of my memoir by the end of 2013. That being said, I am planning to spend as much time as I can to writing my memoir, which means my blog posts will no longer appear daily. I’m thinking of going bi-weekly or even weekly so that I actually might have something to say rather than feeling like I’m constantly rambling on about nothing. Though in the past I have shared certain memories related to my Cerebral Palsy on this blog (and have worked them into my memoir), I primarily began doing that because I was in need of support and feedback. Thanks to all of my lovely followers who have provided just that. However, now that I am beginning to not exactly need the encouraging feedback quite as often, I think it would be best to restrict my written memories to the Word document of my memoir. It seems safer that way. Plus, then my number of pages of my memoir might actually increase (hey, imagine that!). However, that doesn’t mean I won’t still be talking about my writing or what I’m facing on a daily basis in regards to my CP. I’ll still be sharing those snippets, and on those hard days when life just seems to knock me to the ground, every ounce of encouragement from all of you will be just what I need.

As the New Year came and went, I realized how often I was telling so many people: “I’m writing my memoir!” without actually doing much about it. Though I am not necessarily planning to give myself a deadline (good writing comes in time), I do want to move forward with my memoir. I’ve been in a pretty huge rut for quite a while, and even though I have never been a fan of outlines (normally, I’d prefer to just write, write, write and not care where it was doing), I think using an outline could provide me with a greater sense of direction in regards to my memoir, which is exactly what I need at this point. I don’t know how much it will help, but I’ll just have to see I guess.

Along with writing comes reading, and I have written numerous book reviews on this blog in the past. Today I signed up for GoodReads (and have decided to enter a Book Reading Challenge). My goal is to read 100 books in one year. Though that seems like a bit much right now, I know how much I read. And if I don’t complete the challenge, oh well. I just know that I will need a way to balance out all the writing I’m planning to do (plus college classes and friendships). Also, I think all the reading will be a nice break from focusing so heavily on my own life through writing my memoir. I think it was Stephen King who said: If you don’t have time to read, you don’t have the time (or the tools) to write. Simple as that.”

It will be one heck of a year filled with tons of writing, tons of reading, academics, and as much fun as I can squeeze in! Thank you to all of you who have continued with me on this journey, despite the fact that this blog has changed its focus so many times. I appreciate each and every one of you so much!

“Writing and reading decrease our sense of isolation. They deepen and widen and expand our sense of life: they feed the soul. When writers make us shake our heads with the exactness of their prose and their truths, and even make us laugh about ourselves or life, our buoyancy is restored. We are given a shot at dancing with, or at least clapping along with, the absurdity of life, instead of being squashed by it over and over again. It’s like singing on a boat during a terrible storm at sea. You can’t stop the raging storm, but singing can change the hearts and spirits of the people who are together on that ship.” – from Bird by Bird: Some Instructions on Writing and Life by Anne Lamott

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.