Tag Archives: Future

Changing the Face of Disabilities.

24 Feb

Last semester, I had a professor who I really connected with on a more personal level. Though we discussed my role as a student, we also discussed a role I didn’t think I could inhabit so fully: my role as an advocate, especially for those with disabilities. One evening following my night class with this specific professor, we discussed my life, my future, and all the many obstacles I’ve faced to get to where I am today. It was an incredible conversation, one in which I truly felt heard, and it’s something I will never forget.

Specifically, after much discussion regarding my Cerebral Palsy, my past of physical therapy, surgery, pain and hardship, my professor mentioned how she had been wanting to talk about my disability with me for quite some time but didn’t know how to broach the subject with ease. However, once I completed a project for her class in which I discussed the topic of disability discrimination, she knew I was comfortable and wouldn’t mind hearing any questions she had.

As we talked about my life and my future aspirations of writing my memoir and becoming a social worker, I slowly began to realize I had gained a mentor. I had gained someone who not only supported and believed in me, but someone who pushed me to look more closely at myself and my potential. Since I have only truly connected on a more personal basis with one or two other teachers throughout my life, this experience was incredible. It gave me a chance to open up, to share my life, in a way I wouldn’t have otherwise been able to do if I hadn’t had the courage to open up about my disability through a big research project which was presented to the whole class. Specifically, during our conversation, my professor said, “Amelia, you have the power to completely change the face of disabilities.”

I have striived to be an advocate for others with disabilities since as a kid, I wished I had had a kind of mentor who I could talk to about the difficulties of living with a physical disability. In my opinion, having the chance to talk to someone who had been there would have really helped me, so I long to be that person for others. Therefore, when my professor told me I have the power to completely change the face of disabilities, I was floored. I truly felt proud to receive praise of such a high honor. The simple fact that someone believed I had the potential to achieve something so lofty was amazing.

Recently, I thought about what my professor said last semester, and how great it made me feel. As I mentioned that conversation to a friend recently, she said, “Amelia, there’s something you don’t see: you already do change the face of disabilities.” I stared at my friend, confused, not understanding what she meant. She explained by saying, “You change the face of disabilities just by being yourself. You bring awareness to what Cerebral Palsy is. You provide special needs families with the hope that it’s possible to overcome incredibly difficult obstacles. But you know what the best part is? You overcome it all with a smile on your face the determination to keep going no matter what.” The wonderful thing is I didn’t see how I was changing the face of disabilities just by being myself. I imagined I wouldn’t be able to do that until I aimed to do something more tangible, something I could point to and say, “Yes, I brought about that change.”

It’s caused me to realize that maybe being an advocate and lifting others up has many parts. Maybe it doesn’t just involve the tangible changes we can point to with pride. Maybe it’s the little things too: the connections I strive to make with the families of children with special needs at my internship, the talks about CP and bullying I’ve given at elementary schools, and the connections I’ve strived to make with others with special needs through my blog.

Recognizing my abilities to change the face of disabilities definitely isn’t easy. Maybe it takes hearing it from others before I start to believe it. However, as I’ve been told, I’m already doing it just by being myself. As of now, there’s only one way to go in order to continue along this path: forward. I don’t know all the answers. I don’t know the secret to living life with a physical disability without letting it pull you into despair and self pity. But I do know one thing: All I have ever been is myself. Maybe that’s the only secret that matters.

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Wanting to find my niche of writer friends.

12 Dec

Since starting this blog in November of last year and realizing my own need to share my story of living with CP, I think it’s accurate to say there have definitely been days with no words. Days when I would sit at my computer for hours before a memory would find its way into my mind or I’d realize I wanted to share a certain lesson I had learned. However, I think it’s important to realize that we all have days where we get stuck. Though I’m most familiar with it in terms of how it relates to being a writer, I know the concept of being stuck affects people in different ways.

In my experience, I have gotten over many of my ruts by reading. I imagine it has something to do with having the chance to get out of your own head for a little while to enter the world of someone else’s creativity and writing style. Though it doesn’t always act as an immediate jolt, placing myself into the worlds of other writers allows me to gain perspective as well as achieve a better understanding of the message I want to get across through my own writing.

Last month, when I read Truth & Beauty by Ann Patchett, I spent time imagining how things would’ve been different for me now if I had made the decision to major in English instead of Psychology. Though I love Psychology, I have always had a love of words, literature, and the power of writing. However, I think I ended up choosing Psychology because I knew it would hold many more opportunities for me in terms of a future career than English would. Though I am very happy with my decision to study Psychology, I do miss the English courses I took my freshman year of college. In those classes, I flourished. I poured over the short stories we discussed in class, but since my freshman year was a time in which I took a break from my writing, I wasn’t keen on writing my own stories. Though I knew I had the ability, I was fully content to live inside the worlds of the authors I only hoped to one day emulate.

In Ann Patchett’s memoir Truth & Beauty, writer friends Ann Patchett and Lucy Grealy attended Sarah Lawrence College in Bronxville, New York, to study English. The entire time I was reading of Ann and Lucy’s adventures as English majors in northern Manhattan, I imagined myself in a similar place (not in terms of living in New York, but studying English and being surrounded by others who also had a love for writing). I pictured myself finding my writer friends, forming writer groups and spending hours discussing our own writing projects as well as the works of the authors we hoped to be like. I pictured myself spending hours in bookstores pouring over Flannery O’Connor, only to one day find someone sitting near me pouring over an entirely different book, while finding comfort in the silent conversation we shared. Despite the fact I now live in the artsy city of Asheville, I have not found the writing niche I long for. In some part of my mind, I wonder if I would have found my writer friends easier if I had chosen to be an English major instead, especially since it seems to be an unspoken fact that English majors love to write, read and talk about books. Though I hope to eventually find a group of writer friends my age who are able to fully understand my love of literature and writing, sometimes I just wish I had put myself in a better position to find just that.

Though I know I have a lot of time to “find my niche,” I think each of us longs to be around a group of people who understands us and encourages us to fully embrace the things we love. Though I do have friends my age who fit that mold, none of them are writers. I do remember coming across a Literature Club on my college campus, and that may be a place to start. However, I also know that I’m interested in connecting with others who not only love to read, but have the burning desire to write on a daily basis (and end up doing so, for the most part). So yes, I feel like I would benefit from a niche of writer friends. Maybe all it takes is being willing to go out into the community in search of a writers group. Though stereotypically most writers categorize themselves as introverts and would much rather spend a day inside reading than out socializing with friends (and I definitely categorize myself this way), I think the only way I’m going to find my fellow writers to talk with about books, writing and the deeper complexities of life is just by going out and looking for it. However, that doesn’t mean it’s going to be easy. But who has ever said that something worth finding ever is?

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.

Mirrored in Truth & Beauty.

5 Nov

Last night, I started reading Truth & Beauty by Anne Patchett, which is a memoir of Anne Patchett’s friendship with troubled author and poet, Lucy Grealy. Here is a synopsis according to GoodReads:

Ann Patchett and the late Lucy Grealy met in college in 1981, and, after enrolling in the Iowa Writers’ Workshop, began a friendship that would be as defining to both of their lives as their work. In Grealy’s critically acclaimed memoir, “Autobiography of a Face,” she wrote about losing part of her jaw to childhood cancer, years of chemotherapy and radiation, and endless reconstructive surgeries. In “Truth & Beauty,” the story isn’t Lucy’s life or Ann’s life, but the parts of their lives they shared. This is a portrait of unwavering commitment that spans twenty years, from the long winters of the Midwest, to surgical wards, to book parties in New York. Through love, fame, drugs, and despair, this is what it means to be part of two lives that are intertwined . . . and what happens when one is left behind.

This is a tender, brutal book about loving the person we cannot save. It is about loyalty, and being lifted up by the sheer effervescence of someone who knew how to live life to the fullest.

Since starting this book, I have seen myself in Lucy Grealy. Though I have not faced what she went through, the loneliness, fear, and desire to belong are all feelings that I have known all too well. Lucy’s words throughout the novel (seen especially in the letters she writes to Ann), are heartbreaking and brutally honest, but in more than one point in the book, I have felt like the words have been taken from my own soul. Even though this is definitely not the first time that I have seen myself mirrored in the emotions of someone else, I feel like this is one of the few times that it’s been so spot on. Throughout the book, Lucy exhibits numerous times when she is down on herself due to her situation. However, that being said, she is a poet, and writing is the way that she comes back to herself. Writing and her friendship with Ann are what allow her to come back to her reality with gusto. Though I am only about halfway through the book at this point, I have found myself, on more than one occasion, clutching the book almost like a life-line, holding it close to my heart and whispering words from the novel that seem to apply to my own life.

“Writing is a job, a talent, but it’s also the place to go in your head. It is the imaginary friend you drink your tea with in the afternoon.”

When I came across the above quote, I smiled. I smiled with the realization that during certain times in my life, I too have viewed writing as a friend, as the friend who is always there, day or night, waiting to welcome you home with open arms and a carton of ice cream. Yes, the ice cream addition was my own tid bit, but it’s what writing has been for me for so long: the one thing that I can come back to, again and again, like a long-lost friend that you never seem to lose touch with no matter how much time has passed. A friend with whom you can pick up right where you left off, as if you saw them just yesterday and not years ago. Thankfully, I have had the pleasure of having more than one friend like that in my life, and it is one of the best feelings I have come to find in this life. Sure, there are other things that come close to that kind of magic, but they aren’t moments that are also full of deep conversations that last into the early hours of the morning or moments of laughing until your stomach hurts.

“That is one thing I’ve learned, that it is possible to really understand things at certain points, and not be able to retain them, to be in utter confusion just a short while later. I used to think that once you really knew a thing, its truth would shine on forever. Now it’s pretty obvious to me that more often than not the batteries fade, and sometimes what you knew even goes out with a bang when you try to call on it, just like a lightbulb cracking off when you throw the switch.”

Truth & Beauty is full of more honesty than I can only hope to achieve one day with my own memoir. It’s not even just honesty that causes you to pause and think, That’s got to be truth. Those feelings are so raw that the only place they could have come is from the deepest and most authentic part of the soul. It’s more than that, if at all possible. It’s sitting on the kitchen floor with a cup of coffee in one hand and the book in the other, staring down at the page and thinking, I can only hope that one day I am as in touch with the deep and dark parts of myself like this author is able to portray. Though I have become incredibly introspective since beginning my memoir in January, I have not reached this level of raw authenticity. To do so, I believe it takes many more months, if not years, of sitting in the dark corners of your memories patiently awaiting the day when they decide to come out into the harsh light of day. You’ve got to sit in the dark and get to know them on a level that’s more true than you’ve ever known. You must sit with them, day and night, until you know their features and ways in which they move through the world. Until your breathing matches their own with such accuracy that you can no longer tell the difference between your breaths and theirs.

“Our friendship was like our writing in some ways. It was the only thing that was interesting about our otherwise dull lives. We were better off when we were together. Together we were a small society of ambition and high ideals. We were tender and patient and kind. We were not like the world at all.”

Though I am lucky to have an incredible best friend, when I read the above passage, the first thing that popped into my head was the level of comfort that can only be achieved through a childhood friend. I thought of a friend that I have known since kindergarten, and the nights that we would lie in my bed and stare up at the ceiling, talking about our futures like they were millions of miles away. The nights that we would hold hands when we got scared in the middle of the night, only to end up burying our faces in pillows a moment later when we were overcome with laughter. We looked at each other then, smiling and breathing heavily once the laughter subsided, not even knowing what we found so funny, and yet realizing that nothing could top the happiness that had been wrapped up in that moment. It enveloped us, that pure bliss, wrapping us up like a quilt that was stitched with every happy memory of our relatively short lives. We knew, no matter what, that we had each other.

Counseling Special Needs Kids.

24 Aug

Every so often, most of the time when my defenses are down, I contemplate what it would be like to counsel special needs kids in the future. Since I have special needs myself, I feel like I could bring something to the table that other counselors wouldn’t necessarily have: understanding. However, while it may seem admirable for me to want to counsel special needs kids, I think of Grace, a 12-year-old girl I know who has CP. I think of Grace and how it is so hard for me to watch her go through the same pain that I did without being able to help her. However, I also think of the kids who would sit before me, faced with so much, who may only want one thing: someone to listen….or someone who understands.

It’s what I’ve searched for my entire life…someone who can understand. However, recently I’ve come to the conclusion that so much of this journey is my own inner battle. Sure, there are people who want to understand and who are willing to listen, but none of them can say, “I know exactly how you feel.” That’s not my fault, nor is it theirs. It’s just the luck of the draw I guess.

However, when I contemplate counseling special needs kids, I’ve come to a realization: It wouldn’t just help the kids that I’d work with, it’d help me too. I understand that without even being in the field yet to see it. However, another part of me has some doubts. Yes, it would feel awesome to help these kids that I associate myself with in a sense (even though I know that my CP doesn’t define me). However, I also wonder what it would be like being faced with disabilities day in and day out. Yes, I’d already be faced with it on a daily basis due to the fact that I have a physical disability myself. However, I just don’t know if the workplace is an area where I’d want to separate myself from it, if that makes any sense. The thing is, I don’t know how it would affect me. I don’t know if I’d feel like I was being put in a kind of box along with my clients: the box of disability. It’s not something that I’m able to reason through right now, since I’m still in college and won’t know my reaction to it until I’m out in the real world facing it one-on-one.

Either way, I feel like writing my memoir is one of the beginning steps. Even though I’m not talking directly to other kids with special needs and trying to understand how they feel, I’m dealing with my own emotions regarding my physical disability. I’m writing about what I’ve faced and how it’s made me feel, and I think that is one of the first steps if I want to consider counseling kids with special needs. Even though I understand that since I’m in college this is the ideal time for my career choices to fluctuate, it’s something that I’m considering. Though the ultimate goal is to help kids like myself come to understand themselves and why they’re different, I’ve realized how much I’ve benefited from counseling, and I want to give other kids in my shoes the same opportunity to try to move past what they’ve faced. Granted, it’s not just in the counseling. It takes much more. For instance, I know that without my writing I wouldn’t have gotten to where I am today, or being in a position where I can openly talk about my disability in a way that is helping me coming to terms, and ultimately accept, myself. However, combining counseling with my own coping mechanism of writing has brought me here, and I only hope that one day I can give other special needs kids the opportunity to try to come to terms with what they have faced.

Two Years Ago…

27 May

Yesterday I went to Salem Academy (the boarding school that I graduated from in 2010) to see the Class of 2012 graduate. I had a few really good friends who were graduating, and graduation is always a great way to see fellow Salem Sisters who have also graduated. My best friend Skidmore, who graduated from Salem in 2009, came to the graduation too, and I loved seeing her.

As I was sitting in the audience watching the Class of 2012 graduate, it surprised me to think that 2 years had already gone by since I was sitting down in the May Dell in a white cap and gown getting ready to embark on a new phase in my life: college. I remember my graduation day so perfectly, as if it was yesterday. I was so excited, and yet I was also incredibly, incredibly sad. I wasn’t ready to leave the one place where I finally had felt like I belonged only to have to start over again. I didn’t want to leave behind the friends I had made or the faculty and staff who had shown me what it meant to truly follow my heart and chase my dreams. And yet, I was excited for what college would bring. I was anxious to be in a new place with all new people who would all be on their own path of self discovery. I was happy to be done with the grueling academics of Salem, but knew in my heart that without them, I wouldn’t have been as prepared for college as I felt at that moment.

As I sat in the May Dell in my cap and gown, looking up at the all girls’ boarding school that was founded before the United States achieved independence, I was proud. I was proud to be part of another group of women who, though leaving Salem, would continue to think back on Salem in the years to come, relishing in the wonderful memories that shaped our lives. On that day 2 years ago, I was happy. I didn’t think that I would cry until I looked up to see my mom crying. However, in that single moment, all the sadness of what I was leaving behind hit me. But as I shaded my eyes from the sun and listened to girls from my class speak about their fond memories of this place, I let the tears fall. I cried knowing that the young women who stood around me would always be in my heart, even though we were all about to head off to colleges at far ends of the country, and even far ends of the world. And at the end of that day, I left Salem knowing that I’d be back to visit and that I had made some of the best memories and friends that I could have ever imagined.

When the graduation of the Class of 2012 was over, I felt a strange sense of deja vu. It took me a moment to realize that it wasn’t my graduation day, but the graduation of a class that I first got to know as freshmen during my first year at Salem, my junior year. Though it felt sad to see them leave the place that will always be home for me in my heart, I’m happy to know that one of my friends from the Class of 2012 will be heading to Asheville in the fall. It will be so exciting to have a fellow Salem Sister with me once again. Someone to explore Asheville with and talk about Salem with, and most of all, someone to create new memories with, even though both of us know that the memories that will forever bind us are those that were created in a place in North Carolina that I was able to call home for 2 years of my life. However, with my friend coming to UNCA in the fall, it’s as if something incredible has happened: Salem has become both my past and my present.

Pigs In Heaven By Barbara Kingsolver: A Book Review.

20 May

Earlier this week I finished a second book by Barbara Kingsolver, Pigs In Heaven. I loved The Bean Trees and Kingsolver’s writing so much that I just had to read more by her.

Pigs In Heaven is a follow-up to The Bean Trees. However, you don’t have to read The Bean Trees first to be able to follow the storyline of Pigs In Heaven. Here’s the synopsis of Pigs In Heaven (according to Amazon.com):

Six-year-old Turtle Greer witnesses a freak accident at the Hoover Dam, leading to a man’s dramatic rescue. But Turtle’s moment of celebrity draws her into a crisis of historical proportions that will envelop not only her and her mother, Taylor, but everyone else who touched their lives in a complex web connecting their future with their past. With this wise, compelling novel, the acclaimedNew York Times bestselling author of The Poisonwood Bible, The Bean Trees, and Animal Dreams vividly renders a world of heartbreak and redeeming love as she defines and defies the boundaries of family, and illuminates the many separate truths about the ties that bind us and tear us apart.

I can without a doubt say that I enjoyed Pigs In Heaven more than The Bean Trees, but honestly I think that’s because I had already gotten used to Kingsolver’s writing style and I was eager to hear more of Taylor and Turtle’s story together after first meeting them in The Bean TreesPigs In Heaven definitely didn’t disappoint.

Even though I was drawn most to the character of Taylor when I read The Bean Trees, when I read Pigs In Heaven, I connected most with Taylor’s mother, Alice. I think I connected with her most because her strength and strong belief in herself was evident through the fact that she left a marriage that she was unhappy in so that she could be there for a person who was struggling more, her daughter. Alice’s need to be there for her daughter, while also knowing that she had reached an age where she was expected to stand on her own to feet is something that really stuck with me. All teens go through those times with their parents. For me, the most notable was when I went off to boarding school. For most other teens, it’s when they go off to college. When I was first at boarding school, it was hard to adjust to not having my parents around. I remember the months before I left and how I was dying to get out of the house, but the second day I was away from them, I found myself sitting on my bed in my dorm room crying for a mom and dad who were three and a half hours away. Though I know that these feelings are normal, it’s not any easier when you realize you have to pack up and leave behind the people who have believed in you since before you were even born. How do you walk away from a love like that?

What I’ve realized, and what was discussed in Pigs In Heaven, is that even when it’s hard to leave home and go out on your own, you can still look back to your parents for guidance and support. In Pigs In Heaven Taylor relied heavily on Alice when she was in a really difficult spot, but yet Alice was the one to pull away when she realized that Taylor had to walk ahead alone with her own daughter that she loved as much as Alice loved Taylor. It was touching to see the support that Taylor and Alice had for each other, while also seeing how much they trusted that each of them would be okay. Even though I’m not a parent, I know from the standpoint of a daughter how hard it is to realize that it’s finally time to take your own responsibility for things, rather than relying on your parents. However, for me, my parents will be here to support me no matter what, and yet they’ve given me the wings that I need to fly.

I definitely, definitely recommend this book. Go read it! Now!