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)

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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.

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.

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.

The pre-surgery nightmare.

4 Jun

For as long as I can remember, I’ve always been a nervous person. Along with those nerves, I was also very scared, especially as a kid. Rather than using the word “fears,” I was simply told by my parents and my doctors that I had a “vivid imagination.”

Because of this vivid imagination, I remember one specific time when my parents waited a while before they told me about a specific scheduled surgery. I understand now that they didn’t want to alert me to it too far in advance because they knew I’d essentially be a nervous wreck right up until I had to go in for surgery. Though I can understand this now and I know it was a protective measure, I didn’t see it that way when it happened. I remember the night my parents sat me down to tell me about a surgery that would be occurring in about a month. I couldn’t exactly comprehend at first that my parents had waited to tell me, but once I did I immediately started to worry. Not long after that moment, the dreams I would always have leading up to a big operation started. The most common, of course, was the dream in which I woke up during surgery.

Due to my “vivid imagination,” my dreams were exceptionally vivid. In my dream, I was lying on the operating table. My eyes were open, and I was seeing everything. The doctors had the femur of my left leg in their hands, and they were twisting it to the left in order to straighten it out. Though I couldn’t feel any pain in the dream, I could imagine it, which was almost as bad. I looked at the doctor’s gloves, which were covered in blood, my blood. In a room as white as the operating room, the red seemed out of place. And yet, there it was. On the doctor’s hands was the blood that ran through my very veins. As I watched the doctors attempt to “fix” what was “not normal,” I tried to scream out. My mouth opened to make any kind of sound, but nothing happened. I tried to move. I focused so hard on trying to simply raise my right hand off the table, but it was too heavy. The doctors had to know I was awake. If they knew, they’d stop. If they knew, it would all be over. I just needed to do something to get their attention, but they were so focused on my legs. They didn’t even glance up towards my face, not even once, to see the fear and the anguish that was mirrored in my eyes. I wanted nothing more than to get as far away from that room as possible. I wanted to get away from the dead quiet that enveloped me like a blanket that was too heavy, practically suffocating me. The moment I closed my eyes to escape the horror I was seeing, I woke up.

When I woke up from this dream, I felt like I could barely breathe. Without even giving it a second thought, I yanked back the covers to look at my legs. I touched them to make sure they were still intact, still closed up tight. I looked on my legs, my hands, and my sheets for the blood. The blood that had been so incredibly red, so out of place in that white room. With my sweaty palms resting on my knees, my emotions took over. I cried out, knowing that tears couldn’t do this type of fear justice. I rocked back and forth, holding the stuffed teddy bear that was tucked into the bed beside me, and knowing as I started to shake that the tears were coming. When my body finally allowed me to cry, I curled up on my side, hugging the stuffed teddy bear to my chest like a shield, and let my tears speak for me. After the immediate emotion passed and I was curled up into the tightest ball I could form, I began to hum. I hummed the lullaby that my dad so often sung to me when he’d rock me in his mother’s rocking chair on the nights I couldn’t sleep. Eventually, sleep tugged at me again, and I opened my eyes for a pleading moment as I looked into the darkness, knowing the dream was waiting for me.