Tag Archives: Self Acceptance

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.

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World CP Day: Leaving My Mark.

5 Sep

I hate that I didn’t realize until late yesterday evening that yesterday was the very first “World Cerebral Palsy Day” in the United States. According to http://www.worldcpday.org, “World Cerebral Palsy Day is an innovative way for 17 million people with CP to tell the world how they want to make their life better. World Cerebral Palsy Day is also the way people with CP can make it a reality.” Upon reading the website’s explanation of World CP Day, I thought of one thing: I thought of the way I’m already working on telling the world how I’m making my life better. I’m writing my memoir of what it’s been like to live with Cerebral Palsy, and even though I’m doing it for me, I’m also doing it for the other 16,999,999 people who may be struggling to find someone who they can relate to, or simply someone who can say, “I know exactly how you feel.”

Through writing my memoir, I want to be that person for those other 16,999,999 people who may not have someone to listen. The funny thing is…I never thought I would be an advocate for Cerebral Palsy. My disability was something that I tried so hard to get away from. However, I should know that you can’t run from something that will be forever a part of you. For much of my childhood, having CP wasn’t something I was proud of. I wanted to get as far away from it as possible. I wanted to be treated as if I was just like any other kid that lived on my block. However, ever since starting to write my memoir, I’ve become someone I never thought I’d be: I’ve become the girl with Cerebral Palsy who wants to share her story of overcoming obstacles with the world. Before it dawned on me that I had the power to impact others with my words, the idea of writing my memoir hadn’t surfaced. But truthfully, my idea to start writing about my life came in a single moment one night in January. All I was doing was thinking about what I faced and how for my entire life I had been looking for someone who could understand me. However, on that cold night in January, even though I hadn’t found someone who could understand me, I realized how bad I wanted to be that person for other kids with Cerebral Palsy.

Writing my memoir of what I’ve been through has been an incredibly slow process. Since January, I’ve only written 14 pages. Even though that small number makes me cringe, I also know that writing my memoir is the only thing that will finally allow me to accept myself as well as help other kids who are currently faced with what I have been through, and continue to go through on a daily basis. So yes, it’s probably the hardest thing I’ve ever done, but when I think of the look of love and comfort I might receive from just one kid with CP, that’s worth so much more. It may even be worth everything.

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

Every Scar Has A Story.

4 Jun

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”-Khalil Grbran

One of my previous physical therapists, Meredith, shared the above quote with me a few months ago when I was going through a rough patch while writing my memoir, when my head was stuck in the memories that brought me so much physical pain that I wasn’t even sure where to begin writing. Lately I’ve been shying away from working on my memoir because I feel like I need to be able to just sit quietly in the closet with some of my memories that are mentally boxed away before I can shed light on them and begin writing.

I’m a very introspective person, and I’d rather sit outside among the natural beauty around me and reflect on life rather than be surrounded by tons of people. I enjoy time to myself, and since I’ve reached a point in my life where I’m not utterly terrified to reflect on my past, the pain I felt, and the memories that sometimes still haunt me, that’s what I choose to do: revisit the memories, even when they hurt. Occasionally, I wonder why I choose to fill my head with memories that hurt, but then I realize that facing the memories is the only way I’ll be able to accept myself. I kept the memories boxed up for so long, kicking the boxes to the back of my closet and refusing to even think about them.

I’ve been told that the special thing about scars is the story they tell. I hated my scars for such a long time. I never wore shorts even when it was really hot outside because I didn’t like to look down and be reminded of the physical and emotional pain that I went through. So during the summer, you’ll see me in jeans, no matter the temperature. I’d rather wear jeans and feel okay about myself than wear shorts and feel self-conscious. For many years, I couldn’t bring myself to even look at my scars. In the beginning, they scared me. Then, I hated them for being a reminder of my pain. And now, instead of being afraid or angry, I am reminded of not just what I went through….but what I fought through…and what I survived. My scars are a reminder that I survived a level of pain that most people can’t understand. Though my scars will forever be a part of me, they are also a reminder of what I’ve endured and overcome in order to reach a point in my life where I can honestly say that I am happy.

My scars tell their own unique story: the story of my life with Cerebral Palsy, full of every detailed memory during my childhood and teenage years. They hold more emotion than I can even fathom, much of which has been released over time through the process of writing my memoir and having this blog. And even though every day is a little bit easier for me to write what I felt during the years of intense surgeries and intense physical therapy, my scars still remain. Even though my surgery scars tell the first part of my story, the part that involves intense surgeries, 15 years of physical therapy, and many, many tears, they don’t tell the part of the story that I’m living now. I do. I’m writing the story of my life, and I’ve always held the key to unlock the boxes of what I’ve felt. However, it wasn’t until a few months ago that I actually realized I wanted to open up those boxes. But I haven’t just wanted to look at them, I’ve wanted to write them. The pain, the hurt, the strength. Because writing it all down makes it that more real, while also making it easier to be able to say: Yes, I have Cerebral Palsy, and I’m a survivor.