The Mobility Chronicles: CP Edition.

I was driving home from work tonight trying to determine what topic to touch on in today’s post. So much has happened since I was last blogging regularly that it is hard to even know where to begin. At the same time, I know exactly where to start: smack dab in the middle. Because that’s life. It’s not linear. It just happens, and how we handle situations can all be seen in how we respond to them.

To put it bluntly, my mobility has been decreasing over the past few months. But first, let me paint the whole picture. As a child, I utilized canes and walkers and braces on my feet to help me walk. However, for the majority of my life, I have walked unassisted…until now. A few months ago, I noticed I was having some trouble walking, or put more plainly, I was “freezing up.” Here’s the thing. I can walk, but I have fallen so frequently as a result of my CP that it is almost as if my mind keeps that thought at the forefront every time I take a step. You know what they say….don’t think about pink elephants, but what do you do? You think about a pink elephant anyway. Anyway, what I’m trying to say is that I feel like every time I go to take a step, I’m telling myself “don’t fall, don’t fall,” but as soon as that thought process starts, guess what happens? I’m typically on the ground within a few minutes. Therefore, that thought process in itself has made it hard to put one foot in front of the other without some kind of assistance. Even in moments where I think I’m okay, my mind reminds me again, and I can’t get it out of my head. It shouldn’t be a big deal. I fall all the time as a result of my CP. I should be used to it by now, but alas, it’s not really something you get used to, no matter how much it happens.

Coming to the conclusion that I needed something to help me be more mobile and independent was really hard. I fought it for a long time. I’m still fighting it now to be completely honest. But I reached a point where I realized: if I am going to safely get from place to place independently, I need some help (side-note: I hate, HATE asking for help. I need to get better on that). Anyway, a few months ago, I started using a walker (named Hugo because that’s a way better term). It sucks, and I still hate it, but Hugo helps me get from place to place without having to wait for someone to come along and help me get from the side of a building to my car, which was less than 10 feet away. Yes, that scenario really happened. Once I waited as long as an hour for someone to exit a building before I finally just gave in and crawled on my hands and knees to my car. It was insanely humiliating, but I didn’t really have a choice at that point. The longer I stand still, the stiffer I get, and the more difficult it is to move. And you know what? That scenario I mentioned…it didn’t just happen once. It happened at least 5 to 10 times before I realized I needed to figure something out. In case you haven’t guessed, I’m stubborn…and I value my independence more than anything. There’s something you must understand, though. For my entire childhood, the number one goal was walking independently, and I got there. I did it! So now…having to use something to help me get around makes me really mad. I feel like I’m moving backwards, even though I know that’s not the case. I’m 25. I shouldn’t need a freaking walker. And yet, here we are.

While I know Hugo helps me get from place to place, already being at a point where I have to use him sucks. See, I thought I had more time. I didn’t know this was going to hit by the time I was 25. And truthfully, the hardest part is thinking about what other people think. Even though in my mind I know others don’t care, I’m judging myself for it. I’m caring about what I think about the entire situation. And in case you didn’t already catch on to this, I’m really hard on myself. Internally, I keep tearing myself down for having to use Hugo. I feel guilty I think. Guilty I couldn’t have done more to prevent it. And just angry at the image of it. Walking with a walker was not something I ever imagined for myself. I thought I skipped that part. However, I know from experience that ruminating on “What if’s” gets you nowhere. Still…stopping that train of thought is way easier said than done. I’m trying, but I know it’s going to take time.

As of right now, I’m making a conscious decision to allow people to help me more and to actually ask for help when I need it. It’s probably once of the hardest things I’ve had to do. It’s not easy to change thought patterns at the drop of a hat, but I know one thing. I have to start somewhere, and I know my body will thank me someday for giving it the rest it needs. When I’ll start that? Who knows. I’ll let you know when I get there. At this point, I’m just taking it one day a time. That’s all any of us can do.

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My Writing Is Getting A Facelift!

 

I’m typically not one for New Year’s resolutions. My stance has always been that if you want to change something in your life, you don’t need to wait for a specific day of the year to make those decisions. However, at the same time, I get it. It’s a new year. A chance to try new things, commit to things you’ve strayed from, or just make a commitment to treat yourself and the people you love better.

On November 1, 2011, I started my very first blog: Life In The Blue Ridges, and to put it simply, it was not only a smashing success, but one of the happiest times in my life. Back in 2011, I made the commitment to blog every single day for entire year, and I did it. It wasn’t always pretty. Sometimes I had something to say, other days I didn’t. Yet, I still posted every day. Even on the days when the words just wouldn’t come, I reflected. I posted the song lyrics to music that had been stuck in my head, I posted recent photographs I’d taken, or I talked about the book I was currently reading. Through a year of daily blogging, I found something I didn’t know I was searching for: my voice and a community. Simply put, I found myself.

A lot has happened since I first began blogging a little over 6 years ago. I met the love of my life, I graduated from college (BA in Psychology), I got my Master’s in Social Work, and I’ve traversed the daily grind of living life with a physical disability. A lot has changed since I first began blogging, but one thing has stayed the same: my love of writing. However, I’ll be the first to tell you that my blog in it’s current state does not reflect my love of writing. Life happened. School was placed at the forefront of my life. I fell in love. My career was my priority.

As previously stated, the happiest time in my life was when I was blogging daily. I’ve come to that conclusion. And I’ve also realized that the joy of writing can only be felt by writing itself. I’ve tried getting myself wrapped up in my job, reading a lot of really good books, and just doing things that make me happy. However, none of those things have brought me close to the bliss and authenticity I feel when writing. So here I am….back in the blogging community…and making the resolution to myself to write every single day once again. How long that will go, I’m not sure. As of now, I want to set the goal of writing every day for a year. I did it once. I can do it again. I’m sure things will come up that may derail that a bit, but when that happens, I’ll come back to the blank page and type one word in front of the other. That’s all writing is anyway, right?

Happy writing, friends. Here’s to a new year, resolutions, and lots and lots of writing.

The beauty of my worst fear.

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 22 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.

Sharing My Story: A New Beginning

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Though this is not my first blog, this is the first blog in which I plan to focus solely on discussing my experiences of living with Cerebral Palsy and the process of getting these experiences eventually published. Specifically, my goal is to raise awareness for Cerebral Palsy and other disabilities and allow others to gain a deeper understanding of what it’s like to live with a physical disability.

To kick off this blog and a new chapter of sharing my story of living with CP with others, here is rough draft of the talk I have been giving to elementary and middle schools in Buncombe County since November 2013:

I was born with Cerebral Palsy, a disability that affects my nerves and my muscles, causing me to walk differently than most people. I’ve had multiple intense surgeries and 15 years of physical therapy. 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 from her. 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 and there was no one willing to stick up for me. 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 standing 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. That’s why 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 so, 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. However, many of those friendships didn’t last long 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, Allison, was the team caption. This made me excited because I thought: Yes, finally! I won’t be picked last! Allison will choose me since we’re friends. Each team captain began to choose players, and I waited with excitement for Allison to say my name. I looked towards her with a smile on my face, but 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 Allison’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!

I was incredibly sad from being picked last for dodge ball, but you know what? That wasn’t even the worst part. The worst part was seeing a girl named Rachel holding a dodge ball in her hands, a small smile on her face when she saw me, already eager to pelt me in the face with the ball. When the dodge ball game started, I hung towards the back. Despite dreading having to play this game every week, I knew a few tricks. I knew staying along the back wall was the best way to not get out immediately, and I knew I’d be one of the last players remaining on my team primarily for this reason. Therefore, the goal was to simply wait for the rest of my teammates to get out. You would assume the waiting part was easy, but it wasn’t. It was just more time I spent wondering how hard I’d get pelted with a dodge ball. Once none of my other teammates remained and I was the only player left, I allowed myself to look over at the other team. By that point, the other team consisted of six players, and they each held a dodge ball. Six against one, and I didn’t even have my own dodge ball for defense. The players on the other team looked back and forth at each other, trying to decide who would have the pleasure of getting me out. Honestly though, I don’t know why they took time trying to decide. They all knew Rachel had to be the one to do it. Eventually, I looked over at Rachel, staring at her just as hard as she was staring at me. Right before she threw the ball, I saw her chuckle quietly to herself. A few moments later, the dodge ball hit me right in the face. The ball hit me so hard that I lost my balance, falling onto the hard surface of my school’s basketball court. Initially, I could hardly breathe, much less get up off the floor. My PE coach came over immediately to help me up and to scold Rachel for what she had done. However, I doubt Rachel ever got the scolding she deserved because I continued to get pelted with Rachel’s dodge balls throughout my entire fifth grade year.

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 and imitate 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 the imitation 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 still remember the details of every bullying experience I’ve ever had. I still remember how alone and broken the experiences 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 those kids, 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 and blend in. However, differences have never stopped me from trying to be as independent as possible. I have Cerebral Palsy, but I am a survivor.

**If you are interested in having me come speak at your school, please have the school counselor at your school contact me via email at: accoonrod[at]gmail[dot]com**