Tag Archives: Understanding

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.

Advertisements

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.

A conversation with my younger self.

21 Oct

Sometimes I imagine what it would be like if I had the opportunity to speak with a younger version of myself. I wonder what I would say. I wonder what advice I would give to my 7-year-old self, the little girl with the nervous smile who has yet to go through 3 intense surgeries and many, many years of physical therapy. I wonder how it would feel to talk with someone who I knew so well, but yet couldn’t completely relate to since she hadn’t yet gone through all the pain that she would experience in her future. I wonder…

I’m sitting on a bench in a small park that I don’t recognize. There is a playground with swings and a play set, which are all just a few feet from where I’m sitting. Kids are playing in every available space in the park, but I feel like I’m a thousand miles away from their voices. It’s not until I hear her bubbly laugh that I know where I am. As I look over at the play set, she climbs out of the tube slide, practically falling right out into the sand because she’s laughing so hard. A moment later, her eyes lock with mine, and I know. The girl with the nervous smile, bubbly laugh and bright blue eyes is the younger me. However, it’s not until I look down a second later to see the braces on her feet that I’m certain my assumption is correct. Even though my stomach feels like it’s flipped inside out, I get up from where I’m sitting and walk towards the younger me.

“Hi, can I play with you?” I ask. She looks up at me with the hugest grin on her face.

“Yes, but only if we sit right here in the sand. I don’t really want to get up.”

“That’s perfectly fine, Amelia,” I say, as I sit down in the sand beside her.

She is focused on putting her arms as far down into the sand as she can, so it takes her a moment to realize what I said.

“Wait, how did you know my name?”

“Because I’m you. I’m you at 20 years old. We are the same person.”

The younger Amelia looks at me quizzically for a second, and then asks, “Does this mean that we can be friends?”

I can’t help but laugh as I remember what I was like when I was younger. Even at the age of 7, I wanted acceptance. More than anything, I wanted friends. Though those two things are something that I still find myself longing for, it was intensified when I was younger. It was often the only thing I could think about since it held such a strong connection to being just like the other kids, the “normal” kids.

I find myself staring with amazement at my younger self, wondering where to even begin.

“You have a wonderful best friend waiting in your future. In fact, there are many, many friends that will be in your life. However, the one I’m referring to, she’s everything you’ve ever hoped for in a best friend.”

“Why can’t she be here now?” the younger me asks.

“She hasn’t met you yet. She won’t come into your life until you’re 16, but I promise you, she’s the kind of best friend that you have always wanted.”

Instead of concentrating on playing in the sand, I now have the attention of my younger self as she looks up at my face with curiosity, so I continue.

“You’ve got a long road ahead of you, and it’s not something that anyone is going to able to prepare you for. It’s going to be incredibly hard. However, trust me when I say that you can get through it. It’s going to feel close to impossible some days, especially on the days when the pain gets really bad, but I promise you’ll get through it.”

The younger me then looks down at the braces that are on her feet and touches the plastic ever so lightly with her fingertips.

“I’m scared,” she whispers softly.

“I know,” I say. “It’s okay to be scared.”

“You’ll get stronger,” I tell her. “It may seem overwhelming now, but eventually it becomes like second nature. You’ll fall, time and time again. But you know what’s amazing about you?”

The younger me looks at me expectantly, but I know her nervousness lies just below the surface.

“You get back up…every time,” I say.

“Why? Why do I have to keep trying?” she asks.

“Because it’s the only way you can move forward. It’s the only way you can be independent.”

Even though I see the younger me roll her eyes at me, I know that my words are impacting her because she takes my hand and squeezes it. As her fingers link with mine, I am overcome with love for the little girl who has yet to know the intense pain that she will face. I have to look away from her before she realizes that I’m crying. As I wipe away my tears, I look off into the distance to see the sun setting behind the trees.

“I have to go soon,” the younger me says.

I nod, unable to say anything. I don’t know if I’ll be able to walk away. However, I say the one thing I’ve wanted to tell her all along.

“I love you. So so much,” I say, letting the tears fall and knowing that the younger me doesn’t grasp the magnitude of this moment. If only she knew that I would save her from all of this pain if I were able to. However, deep down, I know that I can’t do that. She has to go through it. She has to go through it if she wants to become me.

She hugs my legs tightly, and the warmth of her small body against my own makes me smile.

“I’m so happy that I get to be you when I get older,” she says.

She turns to go, and as I watch her walk away from me, her last words weigh heavily on my mind. Though she may want desperately to be me, I know that I need to remember to be her as well. I know that little girl is still within me, and she is showing me just as much love as I wanted to be sure and show her.

Photo Friday: Yearning for new insights.

12 Oct

Part of my driveway at home covered in fall leaves.

 

“I want to taste and glory in each day, and never be afraid to experience pain; and never shut myself up in a numb core of nonfeeling, or stop questioning and criticizing life and take the easy way out. To learn and think: to think and live; to live and learn: this always, with new insight, new understanding, and new love.”-Sylvia Plath 

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

The Different Faces Of Curiousity Regarding My CP.

13 May

Since starting my memoir this past January, the number one thing that I have realized is that no one knows exactly how I felt growing up and living with Cerebral Palsy except me. As a writer, that can often be a hard way to start off since I don’t have other sources to gather much information from. I just have my own memories and feelings of how my CP has impacted my life.

Even though I may have friends and family who want to understand, no one can say they know exactly what I faced. Growing up, not having anyone who understood was hard. I attended a private school in my hometown from 1st grade until 10th grade, and even though the kids that I went to school with were some of the same kids that could be found on my street on the weekends playing in front yards and riding their bikes up and down the sidewalk, they didn’t really know me. They wondered about me, that I could tell. The way they stared but never said anything told me how they felt. Growing up, I hated the staring, and I still do. However, when I was at school and didn’t have much of anything to “hide behind,” there was no way to escape the staring. The kids I went to private school with hardly ever asked what was wrong with me. Either their parents had told them, or they just weren’t sure. As I was growing up, I quickly learned that I was the one that was going to have to initiate friendships. People weren’t going to walk up to me begging to hang out with me or sit with me at lunch, and that was something I had to deal with early on.

Therefore, I initiated things. I had to let other kids know that I was comfortable with myself so that they could be comfortable with me. When the other kids asked what was wrong with me, I’d say, “I have Cerebral Palsy. I was born with it.” That seemed to satisfy most of the kids. Though I knew they still didn’t fully understand, they were curious. All kids are curious. Therefore, I just had to find a way to answer their question without having to go into so much detail (since I didn’t fully understand things when I was that young either). Heck, I didn’t understand why I was different from all the other kids my age, so how could I explain that to the kids I went to school with. I couldn’t. It’s that simple.

These days, I’ve been hesitant to explain to friends about my CP just because I’ve realized that for most of them, it doesn’t matter. They are my friends, and they could care less about what’s wrong with me because to them it’s not a big deal. To them, it doesn’t define me. Even though it took me a long time to be able to vocally say that my Cerebral Palsy doesn’t define who I am, I have reached a point where I can talk about my CP with my friends (which I think is because I have started writing my memoir and am no longer afraid to be my true self). No, my CP doesn’t define me. However, it still affects me on a day-to-day basis. That’s not something that can be denied. Therefore, when I’ve told my friends about my CP, it hasn’t been hard for me. It’s been easier to talk about, and after I’ve opened up about it, I’ve gotten so much support from my friends about my strength and courage. And in my mind, getting that kind of response is worth facing the fear of talking about the disability that, though it may not define me, has impacted me on a physical and emotional level that most people can’t even fathom.

For me, every single day is a struggle, which is not something that most people know. Most people don’t realize that I still feel a large amount of physical pain, especially in my back, which often causes me to stop, place my hand on my lower back, and breathe through the pain. Even on the days when the pain gets bad though, I choose to be a fighter. I choose to be a fighter because honestly, what other choice do I have? Giving up has never been an option for me, and so rather than simply allowing myself to wallow in self-pity, I’ve learned to thrive.

A New Blog Look And My Writing Journey.

31 Mar

“Everything you’re ashamed of, all the parts of yourself that you keep secret, everything you want to change about yourself – it’s who you are. That’s your power. Deny it and you’re nothing.”-Fame

Last night after I watched Fame (the 2003 version…sorry to disappoint), I was messing around on WordPress and decided to change the look of my blog, while also adding a few widgets (or the various things located along my sidebar). I added a countdown to Ireland. As many of you know, I’m studying abroad in Ireland this summer, and I just had to have a countdown. I’ve also got one on my computer that’s broken down in days (it’s 87 days, by the way). That seems so crazy. 87 days until I’m in Galway, Ireland. WHAT?! Ah, so so cool.

Anyway, I’m happy for a new look on here, and I hope you all enjoy it as well. I figured it was time for some change, especially since it’s Spring. Also, in terms of change, I feel like I have changed a lot since beginning this blog back in November. As crazy as it seems, I began this blog 5 months ago. I’ve blogged every single day for the past 5 months. How cool! However, I owe it to all of my amazing followers who’ve given me nothing but support and encouragement. Really, all of you are so awesome!

I feel like I’m a very different person than I was back in November. When I began this blog, I didn’t really know where it would lead. At the time, I didn’t know that in 5 short months I would have established “Tuesday’s Tunes,” “Photo Fridays,” and above all, the beginning of my first novel, a memoir of sorts. I was thinking today about the journey my writing has taken. I haven’t ever been in touch with my own writing as I have since beginning my novel at the end of January. Though I’ve always had a love of writing (despite a 2 year hiatus when I was trying to figure out what I wanted out of life…which I still don’t quite know the answer to), it hasn’t always been this raw, this natural, this true. A lot of what I wrote growing up was fiction: mostly short stories and some poetry too. There were a few times I attempted writing about my own struggles when I was younger, but back then, I didn’t fully understand everything. I still had so many more questions to answer and tons of obstacles to work through. Also, I wasn’t mature enough yet to attempt to understand the reasoning behind my own emotions that I felt as I was going through all my surgeries and physical therapy sessions. However, that doesn’t mean that I’ve got it all figured out now. I definitely don’t. Writing this book is a journey. A journey filled with pain, fear, love, hope, and dreams. And it’s a journey I finally want to take (which has not always been the case).

It’s exciting to know that I’ve reached this point. Yes, the entire process of writing this book will have its ups and downs, but right now, during one of the high points, I’m finding happiness in the fact that I’ve finally found my voice. I’ve found my voice in the sense of finally knowing how I want to share my story. Through writing, yes. But for a while I didn’t know what I wanted my voice to sound like for future readers. However, I’ve begun to understand that there’s only one thing I want my voice to be: authentic. If I’m writing about a memory that’s sad or emotionally hard, I’ll cry through it. If I’m writing about a memory that makes me angry, I’ll be angry. The only way my readers are going to be able to feel all the emotions I went through is if I shed every tear and let out the anger right along with them.