Tag Archives: Acceptance

The search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.

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The top 5 Jodi Picoult quotes to help you change your life.

17 Nov

I absolutely love Jodi Picoult. She’s one of my favorite authors, which is most likely because I love how all her books make me think. I’ve always loved the way Jodi Picoult writes, and she is one of those writers that somehow knows the words that I feel without me having to utter a single word. I’ve never understood it, but it’s a concept that I’ve come across with other writers as well (John Green, Lucy Grealy). Though Jodi Picoult’s words haven’t necessarily changed me, they have helped me realize the aspects of my life that I hope to change.

1. “Maybe who we are isn’t so much about what we do, but rather what we’re capable of when we least expect it.” – from My Sister’s Keeper

This quote, though it’s simple, gives me hope. It is a reminder that yes, we will all make mistakes, but those mistakes shouldn’t be what others constantly focus on. Instead, we should remember the moments that we were strong, courageous, and brave. For instance, people have always told me how strong I am for what I have been through. However, I never know how to respond. I was strong because I had to be. There was no other choice. This quote helps me to see that strength that is within me, even though there are countless times in which I’d prefer to not always have to be the strong one and simply let someone take care of me.

2.“Sometimes to get what you want the most, you have to do what you want the least.” – from My Sister’s Keeper 

For me, this quote relates to the concept of writing my memoir vs what I what to achieve through writing my memoir. I want acceptance in myself, but more than that, I want other kids with disabilities and other kids who also go through horrendous surgeries to know they are not alone. However, to get to the point where I can help other kids like me, I have to do the hardest thing I’ve ever attempted: I have to relive the memories of my childhood so that I can write them down. Though it’s a painful process and sometimes I’m not entirely sure why I keep on writing, I think of the kids that are lying in hospital beds feeling scared and more alone than a widow on Christmas. It’s because of those kids that I keep on trudging through, because once upon a time, I was one of them, and I spent so much time wanting for someone who could understand. And that person never came. So I want to be that person for other kids. I have to be, because feeling like no one understands when you’re going through the most intense physical pain of your life…that’s the worst feeling there is.

3. “You can’t look back – you just have to put the past behind you, and find something better in your future.” – from Salem Falls

This quote has definitely been the kick in the pants when I’ve needed it. I’m naturally one of those people who focuses on the words “what if.” However, reading this quote always helps me to reminder that I just need to look ahead rather than always focusing on what might have been, because keeping my eyes glued to the rear view mirror isn’t going to do me much good. Instead, I need to look ahead and realize that the people who are in my past are there because the things that I’ll find in my future will be so much better.

4. “You might have to lose control before you could find out what you’d been missing.” – from Nineteen Minutes

This quote is similar to saying “Sometimes you have to hit rock bottom to realize what you had.” It’s all about perspective. Sometimes, all we need is a shift in perspective, a chance to look at a situation in a different way in order to focus on what’s really important. I definitely know there have been times where I have lost sight of what’s truly important because I’ve allowed myself to get too bogged down by the petty things that won’t mean much in the long run. By changing my perspective and realizing that focusing on the important things are what really matters, I learn more from the situation, and I’m able to be happier.

5. “Just because fate had thrown another obstacle in my way didn’t mean I had to give up my dreams.” – from Harvesting the Heart

Dreams are a special thing. They give us a purpose, a direction to move towards. I am one of the fortunate people who knows the feeling of being able to live my dream: writing about my own life in order to help other kids who have been through something similar. However, I know that for many people, dreams reside in the distance. They are present, but they are regarded as things that don’t always deserve the right amount of attention because there’s not enough time or money or space. Living a dream isn’t supposed to be easy. You’ve got to work for it, every day. But the feeling you get when you realize you’re living it…when it’s staring you in the face and giving you more joy and purpose than you ever thought possible…that’s a feeling that borders on miraculous.

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.

Who Knows You Better Than You Know Yourself?

1 Mar

I’m always amazed at how songs can transport you back to a year, a day, a moment. This morning I heard “I’m Only Me When I’m With You” by Taylor Swift, and I instantly thought of my best friend Skidmore and all of the memories we made at Salem (the boarding school I went to for my junior and senior years of high school).

I remember when I met Skidmore. It was orientation in August of 2008, and all the new students were moving in. Skidmore was a senior at the time, and so she was helping move everyone in. Even then, though I didn’t really know her, she seemed interesting. Though it did take us a little while to become close, once we were, it was as if we had been friends for years. In the beginning, Skidmore gave me the run-down of Salem life….explaining some of her best memories and just the ins and outs of dorm living. It wasn’t as if Skidmore was telling me what to do. She just was familiar with everything, so she showed me the ropes. Like I said, it was as if we had been friends for years even though we had just met. I just had this gut feeling that I’d be able to trust her (despite my trust issues), and I just figured that we’d be really great friends no matter what (which has been true). Skidmore was a lover of hugs, and that instantly was a bond between us. Our bond of friendship continued to grow based on our love of country music and many of our views on certain things.

I remember one particular night of my junior year. I was having a rough time because of a comment that my roommate had made regarding my CP. It upset me a lot, and I needed someone to turn to. I needed to find someone to open up to about my past. Not just anyone though. I was too upset and hurt to just explain my past to someone who would just listen due to curiosity rather than a genuine sense of caring and concern. So, I turned to Skidmore, and it was one of the best decisions I’ve ever made. I instantly felt relieved (after I got a good bit of the big stuff out), and I still remember how Skidmore reacted. She told me that ever since the first time she saw me, she knew I was different, but not in the sense of my CP, but in the sense of having a fearless attitude towards life. After that night, Skidmore and I became even closer. I found out that she got really attached to friends too, so things worked out in that sense. But after explaining the first bit of my past and knowing that she responded in such a positive way, I couldn’t hold it in anymore. I let all of it out, and Skidmore just listened and commented or asked questions when she wished. It was the beginning of one of the most incredible friendships I’ve ever had.

Skidmore and I are very similar. We both get attached to people easily. We love hugs, country music (Taylor Swift in particular), Jodi Picoult, and just other random things. But it’s not those things that make us close necessarily. We trust each other completely, and we both know that we’ll be there for each other no matter what. It’s even gotten to the point now where Skidmore sometimes knows me better than I know myself. She was the first friend to fully understand me, and that means so much to me. It’s not that she knows what it felt like to go through what I did, but she understands the views that I have towards all of it. For instance, I talked to her about my book a while ago. She was the first one of my friends that I went to regarding guidance for my book. Since she knows me so well, I know that she would be able to really help me. She said: “Amelia, in the past you’ve accepted bits and pieces of your past, but I don’t think you’ll accepted it fully. Though you’ve been able to talk about certain memories, you’ve skirted around others because they were painful or scary. This book is going to be one of the hardest things you’ve ever done, because you won’t have the option of beating due to the harshness of the memory, the fear, or the pain. You’ll just have to plunge into it, and have the courage to know that you’ll surface again when you’re ready.” When Skidmore said that, I was shocked. I was shocked because it was pretty much spot on.

I’m certain that Skidmore and I will be best friends forever. Though I’ve used the phrase “best friends” numerous times, the friendship of Skidmore and I is exactly that. Even though sometimes it’s weird to realize that someone knows and understands me better than I know myself, it’s also a good thing to have since in most situations I don’t even have to explain to Skidmore why I made a certain decision or said a certain thing. She just gets me.