Tag Archives: CP

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.

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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

Social rejection through the eyes of a CP adult.

3 Oct

I walked into my Community Psychology class this morning to see the following prompt written on the board:

Journal about a time when you experienced disapproval or rejection from peers. What happened? What kind of thoughts and feelings did you have?

When I was in middle school, I took a required Physical Education class every year. In my middle school PE classes, we played “slaughterball,” which was our definition of dodgeball. I think “slaughterball” is a more accurate description of the game though. Every week in PE, I was chosen last for slaughterball. Even though being chosen to play was better than not being chosen at all, being chosen last was one of the worst feelings I ever experienced during my middle school years. When someone who sprained their ankle the day before and was on crutches was chosen over me, it pretty much felt like getting punched in the stomach.

Even though I know that many middle schoolers go through the experience of being chosen last for a game or sport, it didn’t feel the same. Though I know that other kids who were chosen last may have experienced the same feelings of hurt, frustration, and not being good enough, I know that I was chosen last simply because I didn’t have the level of physical ability that my other classmates did. I can’t even count the number of times I came home from school crying because, once again, I had been chosen last. I think it was even harder for me due to the fact that I couldn’t change the fact that I had CP, while the person who had sprained their ankle would be healed and ready to run around with the other kids in a matter of weeks. There never was a 6-week period for me to “recover” from my Cerebral Palsy. At the same time, it’s not something that I suffer from. It is just something that I have. No amount of exercises or talk therapy can change the fact that I am a 20 year-old girl who has Cerebral Palsy.

I’m incredibly familiar with social rejection. I’m way more familiar with it than I want to be. From being chosen last in slaughterball to getting pelted last in slaughterball because the other kids knew that I couldn’t move fast enough to avoid the ball coming at me, I’ve felt it all. I know what it feels like to be stared at, not just by kids but by adults as well, due to the fact that I walk funny. I know the feeling of sitting in my high school auditorium  watching a mini-play in which the main character had Cerebral Palsy…letting the tears come…and wanting so badly to just get up and walk out of the auditorium, but knowing that doing so would cause me to draw even more attention to myself. I know the feeling of having people avoid me due to the fact that I make them uncomfortable or they are just unsure how to act around me. I know what it feels like when someone is dying to ask me what is wrong with me but can’t seem to even say it because they are too afraid of bringing it up and hurting my feelings. Worst of all, I know what it feels like to have someone imitate the way I walk and then using the bullshit excuse of “I’ve been told to observe people for a class.” No, I’m not kidding. That happened.

You could say I have felt more than my share of social rejection. Sadly, the majority of the social rejection that I have felt stems from the simple fact that I have a visible physical disability, so I naturally become an easy target for teasing and social rejection. However, don’t think that I am saying that all the other kids who have experienced social rejection but don’t have CP are any less important. That’s not what I’m saying at all. However, I think it’s important to understand that due to my CP, I became an easier target for teasing and social rejection, so in my eyes, it hurt worse simply because I was being teased about something that I couldn’t change. Despite the fact that I have gotten stronger due to experiencing so much teasing and social rejection, it wasn’t easy. It still isn’t. Even now, if I get funny looks due to the way I walk, it hurts. It makes me want to cry or scream. It takes me right back to how I felt in middle school when I was chosen last for slaughterball because of the simple reason of having a physical disability. Being triggered to those moments of rejection in my childhood only takes a moment. I’ve always known that. However, the prompt in this morning’s Community Psych class made me remember just how easy it is for me to feel exactly how I did in middle school. It only takes a moment, a trigger, or even the two simple words of “social rejection”….until I’m back in the gym of my small town private school getting pelted with a red rubber ball because I wasn’t able to move quickly enough.

Writing: A Thriving Mechanism.

16 Sep

I’ve been in a relatively happy mood over the last week, which explains my lack of writing lately. As strange as it may seem, my desire to write often decreases if I’m in a good mood. I partly think this is the case because for as long as I can remember, writing has been a coping mechanism. I began writing at the age of 8 because there were stories in my head and poems that I felt just needed to be expressed. I continued to write not because I had all these wonderful ideas for stories, but because at the age of 11, my intense surgeries began, which were followed by lots of intense physical therapy. I wrote to let out the pain.

Lately, my desire to write has changed somewhat. I no longer use writing as a coping mechanism. These days, writing is more of a thriving mechanism. Of course, I do have down days, and my writing definitely comes in handy during those times. However, more recently, my writing has been a tool to celebrate what I have overcome. Living with Cerebral Palsy isn’t easy. Even though most people can probably figure that out, the majority of people don’t know what people with CP face on a regular basis. That’s why I strive on a daily basis to share my story with the world. Even though I haven’t written that much regarding my memoir, I still talk about my life with CP on a regular basis when it comes to this blog.

Even though I’ve only begun having a CP focus on my blog since beginning my memoir in January, I can already see the incredible impact that it’s had on me as well as others. In terms of my life, sharing my struggles of having CP has made me happier and has put me on the path of ever so slowly accepting myself. It has also allowed me to realize that I was born to do this. I normally don’t use that phrase because in my head it holds a little bit of a religious connotation. However, all religious connections aside, I do feel like being a CP advocate and sharing my story of living with CP is what I was born to do. That doesn’t mean that it’s the only thing I was born to do though. I love psychology just as much as I love advocating for others with disabilities, and the thought of one day being a counselor for kids with special needs seems like the perfect fit. Then again, I don’t know what the future holds. I’ve got my entire life ahead of me. In terms of my blog, I’ve also seen how focusing on talking about what it’s been like for me to live with CP impacts others as well. Since beginning to discuss living with CP this past January, I’ve received wonderful feedback. I’ve received comments and emails from parents of children with CP who have thanked me for giving them a window into what their child faces. I’ve received a comment from a girl who is facing a lot of the same surgeries in the same hospital that I went through. I’ve had a woman come up to me at a restaurant after overhearing me talk about writing my memoir to tell me that her son has CP and that she fully supports what I’m doing. Even though I have a good amount of benefits that writing my memoir has provided for me, I do it for everyone else. I do it for the kids with CP. I do it for the parents of kids with CP so that they can better understand what their children face. I do it for Grace, a girl I know who has CP, because it’s the only way that I know how to help her. As well as writing my memoir for the families that have been affected by CP, I write about my life for the general public as well. Not many people know about CP, and I know for a fact that not many people know what someone with CP faces on any given day. That’s what I’m here for: to be the voice of every other kid with CP who just wants someone who understands what they’ve faced.

So maybe I don’t have to use writing as a coping mechanism anymore. However, I believe that’s one of the biggest steps that I could’ve made. Rather than being set on writing through pain, I have chosen to focus on the people who I am impacting every day through my words. It is because of all of you that I have decided to continue my writing journey. Someone’s got to be the voice of so many who are currently faced with having to live with Cerebral Palsy. Why can’t that voice be mine?

When in Ireland, hurl yourself into experiences.

21 Jul

Today I went to Dublin with my study abroad group, and it was a blast. Even though my favorite thing we visited today was definitely the Book of Kells at Trinity College, the highlight of my day was sitting with my study abroad program director, Finn, after visiting the Book of Kells and just talking.

I told Finn about my writing, my home, and just gave her a bit of a look into who I really am. She has been a wonderful person to be able to count on while I’ve been in Ireland, and I know that I wouldn’t have enjoyed myself as much if it wasn’t for how comfortable she’s made me feel and how accomadating she’s been. Anyway, during our conversation she said, “A few days ago Kevin [her husband] and I were talking, and we both mentioned how we hope that one day our kids can grow up to be just like you. You are a true inspiration.”

Cue tears. No really. It made me feel so so amazing, and I’m still in shock. I’ve heard numerous people tell me over the past few months and years and practically my whole life how much of an inspiration I am…not just to kids with disabilities, but people in all walks of life. No amount of words can express how touched those compliments make me feel. Most of all, however, it’s hard to know how to react since in my mind, I’m just being myself.

Finn went on to say this: “Amelia, not everyone in your situation would go out and take life by the balls. I know people who would just sit inside all day and list all the ways that they are limited. But Amelia, in my eyes, you’re not limited. You’re doing this…full force and without hesitation. You’ve broken down those limits a while ago.”

Though I understand what Finn is trying to say, I know deep down that I still have limits. However, even though I am limited, I still go out and do as much as I can for as long as I can….here in Ireland and in life in general. However, in terms of Ireland itself, there hasn’t been a choice. Sitting around and missing out on things isn’t even an option. I don’t know when I’ll get this opportunity again, so I’ve got to take it while I’ve got it. So I’m going out and doing as much as I can so that I can get the full feel of this experience. Opportunities like this don’t come around every day. And even though I know that one day I’ll be coming back to Ireland, I’ve got to experience as much as I can now. Right now, I want to completely hurl myself into these experiences. It’s what I’ve done so far, and it’s been absolutely amazing.

Writing A Memoir In Letter Format?

12 Jul

After Tuesday’s post of my third letter to Grace, I’ve been debating making a change with my memoir. I think I might focus on having it the book be my autobiography through letters to Grace (Grace is a 12-year-old girl that I know who has Cerebral Palsy as well). Having my memoir be mainly the letters would be easier than what I’ve been trying to do. Before thinking of this change, my memoir has been fine….but it’s been very much of a chore. I haven’t wanted to write it.

But the letters to Grace….they come easily. Even when referring to really hard memories, aiming the memories in a letter format to Grace feels much more natural….or it flows better. They’re easier to get out. And I feel like my readers would enjoy it more. Though I know that I shouldn’t focus on that, it still does come to mind. Granted, I wouldn’t just be starting the memoir with the 3 letters that I’ve written. I’d have to go back through what I’ve written regarding my memoir so far and pick out which memories I want to include in the letters.

I think using the letters as the basis of my memoir fits more with what I’m aiming to do by writing my memoir. I want people to be able to understand what I’ve faced but I also want other kids with CP and families with kids who have CP to realize that they are not alone in the pain that they’re feeling. The latter reason would definitely fit with using the letters as the focus since the letters are aimed at someone who has CP. That being said, I’d have to include a few chapters on CP in itself of course because I know that not everyone who will end up reading my memoir will have knowledge or experience with CP.

Since I have chosen to rework my memoir, it’s almost as if I’m back at the beginning. However, at the same time, I’m not. I’ve already made progress. As well as already having written 3 letters, I’ve already dug up a lot of the really hard memories. Granted, there are still some really hard memories to uncover, but since I’ve already written about some of the hard ones then this reworking cycle a little bit easier. The concept of the reworking feels very normal though. There are no writers who like the very first thing that they write. There is a reason that English professors and some of my writing mentors have told me that first drafts are complete shit. That’s because it’s true. They are.

As a writer, I’ve got to be willing to change things and rework what I’ve written since I want to make what I write as best as I possibly can. Plus, I think having my memoir be letters to Grace makes it more unique. Plus, with focusing my memoir on the letters, it also means that I’ll have the letters to give myself strength even if I don’t end up publishing them. Either way, writing them will be beneficial to me. And that’s all that matters. Well that and helping others with CP realize that they’re not alone. Plus, even though I’m writing my memoir, having the letters be the focus of what I’m writing takes me out of the center of the book. Yes, it’s an autobiography…so it’s my life…but who wants to read a memoir that reads something like this: “I went through (blah blah blah) and now I’m a stronger person…..I went through all this other shit…..I felt all this pain that you can’t understand…Me me me me.” Ick. Who wants to read that?

So…thoughts? What’s your opinion on focusing my memoir on letters to Grace? Better idea? Let me know what you think. I love having your feedback!

To Grace (Part 3): Accepting Love.

10 Jul

To Grace. To Grace (Part 2): Walking Through The Fire.

Dear Grace,

I don’t know what it is about writing these letters to you that makes me feel better, but they do. Even though I know that you aren’t in the same place as me in terms of your CP, simply being able to say that I personally know another girl with CP who has faced what I have makes me feel that much closer to you.

I’m in Ireland right now, and I love it. It’s been such a wonderful experience. However, it’s been so hard too. Physically and emotionally. I’ve walked more since I’ve been in Ireland than I have in a long time. Though I know that it’s making me stronger, it hurts. It hurts physically and emotionally because there’s no one here that understands. There’s no one that can say they know what I’m feeling. I know that I said in my previous letters how hard it’s been on me that no one can understand what I’ve faced, but it’s just so so so hard, Grace. I know that you know this.

Having no one who understands is almost as if I’m walking down this dark corridor with all these different doors. The doors lead to people who want to understand, but can’t. The need to go through each door and cry is so strong. The only thing worse than not having anyone who understands is knowing that there are people in my life who want to understand but aren’t able to. I can see it in their eyes. There isn’t pity there. There is just the desire to want to know me on a different level, and the degree that I want people in my life to be on the same level as me is stronger than I ever imagined. It’s close to impossible though, Grace.

I know that you understand. However, I also know that it’s not something I’d easily be able to discuss with you. I’d like to imagine that one day when we are older we could try to talk about it. Right now though, it’s too fresh for both of us. It’s too true, too real, too close for comfort. You’re closer to it now than I am. You’re still having to go to PT and face the pain that I’ve been reliving over the past few months through attempting to write my memoir. Even though I’m not facing that pain in the same way that you are right now, I’m facing it in my own way. Saying it’s emotionally painful doesn’t even come close to what I have felt over the past few months. Recently, I really have wondered why I keep putting myself in this position. When you think about it, it’s as if I’m bulldozing myself with all these really painful memories that I never wanted to think about again.

Over the past few months I’ve had multiple people ask me why I have openly placed myself so far deep into my past that I feel completely and utterly stuck. I don’t know how to answer that question because I myself don’t know why. At first, I stuck to the reason that it was because I wanted to reach a point where I could accept myself. However, now that I think about it, self-acceptance is something that every single person struggles with. I don’t think I’ve ever come across anyone who can openly say that they completely and totally love themselves. It’s not an easy thing to do. It’s hard to block out all the negative feelings you have about yourself, even if you do feel like it would benefit you if you didn’t dwell on them.

So as of right now, I’m walking down that dark corridor…feeling alone and yet realizing that there are people who reside behind the doors who are ready and willing to take me into their arms and simply hold me. Because sometimes, no matter how many times we try to be strong, the only thing left to do is sit down and just let the tears come. I used to hate giving in to the tears. It used to make me feel weak. But Grace, we’ve faced so much. We’ve been through pain that people can’t understand. So I guess the thought of walking down a dark corridor and feeling completely and utterly alone isn’t as depressing as I’ve made it seem. It’s just accurate, especially when we realize that the people that we care about aren’t as far away as we imagined. They’re close…patiently waiting…waiting to try to feel what we’ve felt….even though that feels close to impossible right now. It shows love, Grace. It shows a strong emotion that I’ve been so nervous to let in. Nervous because of the strength and power of love. But also nervous because I feel like I’ve been walking through my life recently not knowing how to accept love from people who want to give it to me. I just don’t know how. I’m trying though. I’m trying so hard.

I’m thinking of you. Please know that.

Love,

Amelia