Tag Archives: Introspection

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.

Try like hell.

27 Sep

Sometimes I wonder what my life would have been like if I hadn’t been born with Cerebral Palsy. I wonder if I would have decided to be a dancer or maybe an athlete rather than an aspiring psychotherapist and a writer. I wonder if I would have spent my childhood climbing up into trees to read books rather than becoming all too familiar with hospitals, surgeries, and physical therapy. I wonder if I would have had a big group of friends throughout middle school and part of high school rather than coming home every day crying because I had no friends due to my differences. I wonder if I would have spent my time hiking beautiful mountains rather than having to wonder if I’d have the stamina to make it up the next hill.

Earlier this week, my dad said, “Sometimes I wonder what it would have been like if you hadn’t been born with Cerebral Palsy. You could have had a wonderful life. You wouldn’t have had to struggle so much.” Though in the moment I wanted to interject and say I have had a wonderful life, I couldn’t do it. I couldn’t say the words. As soon as I wanted to say something, the memories all came back. I saw myself sitting in a hospital bed screaming out in pain because of the spasms that wouldn’t stop. I saw myself in kindergarten getting my hair pulled every day because I was the one child on the playground who was unable to run away. I saw myself shaking as my classmates pelted me with doge balls during middle school gym class because I couldn’t move away quickly enough. I saw myself crying as a girl I didn’t know imitated the way I was walking and then said she did it because it was a “class assignment.” I see myself at 21, struggling with depression and still not being able to truly accept and be comfortable with having a physical disability.

You would think after 21 years I would be used to the cards I’ve been dealt in this life. The truth is, I’m not. Every day of my life is a challenge. On top of having to convince myself to go to class when my back and my muscles hurt, I have to try to convince myself to get out of bed and face the day even though I’d rather sleep to escape the overwhelming sadness and hopelessness that hovers over me like a dark cloud.

I’m trying to learn to hold on to the good moments, though they are few and far between. The color of the changing leaves during autumn, the few (but true) friends who have been by my side through all of this darkness, a dad who has never given up on me, a smile from a child fighting cancer after completing an art project I taught her. In the darkness of depression, it is very hard to remember those good moments, especially when the bad days outnumber the good. However, I’m trying. It’s all any of us can really do. We try like hell, and hope against all odds that we can kick this life just as hard, if not harder, as it kicks us every single day.

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.

Diving below the surface.

6 Oct

I want people who write to crash or dive below the surface, where life is so cold and confusing and hard to see. I want writers to plunge through the holes—the holes we try to fill up with all the props. In those holes and in the spaces around them exist all sorts of possibility, including the chance to see who we are and to glimpse the mystery.-Anne Lamott

Today, I finished reading Anne Lamott’s book, Bird by Bird: Some Instructions on Writing and Life. This quote from the book really stuck with me. Over the past few months, I’ve been drawn more and more to books about writing and what it takes to be a writer. Though I don’t read the books in order to remind myself why I write, I do read them in order to remember that many of the emotions that I feel as a writer don’t enclose me. Rather, they allow me entry into one of the most special worlds I’ve ever known: the world of writers.

I first began to write because I felt like no one understood what I was feeling. Writing was the way that I could be completely myself without having to explain why I felt or didn’t feel certain emotions. As I sat in my childhood bedroom at the age of 8 with a journal and pencil in hand, I realized that I didn’t have to hide. I could pour my entire self into my words, and the only person who had to read those words was me. However, more recently through this blog, I have started to understand the strong sense of community and belonging that I’ve been looking for for so long. It’s been right here, waiting for me to discover it. The world of writers is one that is very hard to explain to those who aren’t writers. However, for those of us who are writers, we know what our world is like. We wake up in it every morning. We plunge into it on a daily basis when we sit down at our computers to write out what is itching to be released. We know what it’s like on the bad days when the words won’t come, when it’s too pretty outside to sit in front of a computer that holds the daunting blank Word document. However, we also know the joy of the little victories: completing a chapter, getting an article published, the sense of relief that comes when another writing project is finished. Even though those little victories can keep us afloat for longer than we imagined, it’s the recognition we want. I don’t mean being the next New York Times Bestselling author or making millions of dollars. I mean being told by one single person that our words have touched them or helped them in some way. That’s the prize, “the big kahuna.” It’s what keeps me coming back to my desk, day after day, to share my story.

I haven’t opened the Word document that houses my memoir in a matter of months. Even though I could use the excuses of college classes, friends, work and other random responsibilities that pop up for juniors in college, I’d just be fooling myself. I’m naturally an introspective person. However, the kind of introspection that my memoir has involved has brought me face to face with memories that I never thought I’d have to experience again. However, for many writers, that’s what writing is. It’s facing our demons and learning to accept them so that we can move on to a better and more fulfilling life. I know from experience that it’s incredibly hard. It’s one of the hardest things I’ve ever done. I keep trudging along though. I keep on “diving below the surface” of my life for the chance of impacting just one person, for the chance to be part of the reason that they feel even just a little less alone.

The problem with the word ‘disabilities.’

26 Sep

“Part of the problem with the word ‘disabilities’ is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can’t feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren’t able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities.” -Fred Rogers

Due to the presence of a new person in my life, I’m slowly beginning to understand what has set me apart from so many others with a similar disability (and even those who are non-disabled): my drive. Yesterday, this particular new person in my life said: “You have incredible drive. It’s what I like about you. If you’re standing at the bottom of a hill and you know that you’ve got to get to the top, you’re going to find a way to reach the top, even if it means that you have to push yourself harder than ever before. I admire that so much.”

Even though I’ve known that I’ve had an incredibly strong drive for the majority of my life, giving up or walking away from something just because it’s hard has been something that I don’t consider often simply because in my mind, in terms of my disability, I’ve never had another option. I pushed through because I had to. However, due to the current new person in my life, I’m beginning to see that my drive has the potential to help not just me, but so many others around me as well. Also, over the last few months as I have done more introspection, I have come to understand that focusing on my abilities is a much better way to live rather than focusing on the ways that I am limited on a daily basis. Though that may sound obvious, I can’t tell you how easy it is to slip into the hole of self-pity. Even though for my entire life I have never wanted to accept pity from others, I place so much pity on myself through my own thoughts and actions. Maybe that has to do with my low self-esteem or something else. However, I have a gut feeling that this new person in my life has the ability to change many of the negative outlooks that I’ve had towards myself for so long.

Though I may say that I have a physical disability on a regular basis, maybe I’m focusing on the wrong things. Maybe I should be focusing on the things that I’m able to do rather than those that I can’t. I know from personal experience that this is so much easier said than done. However, when a new person has come into my life who thinks so highly of me, I owe it to both of us to at least try.

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.

Tuesday’s Tunes And Advice From A Writing Mentor

27 Mar

I keep up with one of my writing mentors, Mike, pretty regularly. Recently, I’ve told him how the progress on my book is going and the different feelings I’ve been having. I thought I’d share what I sent to him and what he replied:

From Me to Mike: Though writing this book has been incredibly therapeutic, I’ve found that it has also caused me to bury deeper into myself. Though that is good in terms of growing individually and learning more about myself, it also creates a sense of loneliness that I know many writers struggle with. Though I have support from friends and family, they don’t quite understand the ability to get so lost in words that reality seems far away. Though many years ago I used to welcome the escape from reality that writing provided for me, now it seems to be more detrimental than beneficial.
There are days when I’m just lost in the words, in the memories, and climbing out takes more strength than simply sitting among the memories. It’s hard to plunge into shades of grey to write out my feelings. Then again, the only way to do this sort of thing is to just write. Write to breathe, to communicate, to connect, to truly live. The urge that I have to write in order to survive is strong, though sometimes being “in the dark place” for too long can be frightening. However, I’ve come to realize that in those places….the places of total fear and memories…are the places that I’ll be able to come face to face with who I truly am.
Through my writing, I’ve finally found my voice, which is something I remember you telling me the importance of a few years ago. Often times, people are surprised when they read some of my work only to find out that I’m as young as I am. However, though I am told how mature I am at my age, I remember that I came face to face with the reality of life at a very young age: the reality that life is hard and that the most important things one can achieve in life are never easy. Can you relate to any of this? The dark places…the shades of grey…the loneliness? How have you handled it?

From Mike To Me: My friend Tom Poland, who has made his living as a writer, thinks all good writers are flawed individuals; whether from an internal defect or something traumatic that happened in their life. I don’t necessarily agree, but a lot of us are. No one else quite understands how the process affects us. Other writers all understand the loneliness.
I am by nature a positive person and see the humor even in the darkest of times. I also find that writing about those dark days, times, and feelings is therapeutic for me. We all have dark days, periods of nothingness, and insecurity.
People who want to write, to open up their heart, put it on display and allow others to pass judgment on what is written, are different from the rest. If you want to write, whether you eventually become recognized or paid for the effort, you must have some of those feelings. Writers are more introspective, see things differently, and analyze events and feelings different from other people.
I have had a relatively simple and ordinary life. You have suffered and endured more already than I have in my whole life so far. I can’t begin to relate to what it must be to try and dig up some of the things you find deep inside. I do think it is important to do it, even if no one ever reads it but you (and hopefully me). The writing is the important part. It begins to take shape as you sweat over every word and you become stronger with each deeply hidden scrap you uncover.
Guy Clark wrote a song recently called Hemingway’s Whiskey, about the art of writing. It is simple as are most of his songs. Kenny Chesney recorded a version on the Lucky Old Sun album. Listen to an old man’s version of what you are feeling and stay in touch with me.
I am with you all the way and know what you are feeling. I am also extremely proud of you, as if you were one of my own. Keep digging and keep me informed.

Words cannot express the gratefulness I have towards Mike for always being truthful when it comes to the art of writing, while also being supportive and giving me the push I need to believe in myself. I’ve struggled with believing in myself for quite some time, and when I can see how much others believe in me, it gives me a spark of hope….a small glimpse that maybe the dream of sharing my story with the world could one day become a reality. However, like Mike said, writing is the important part (no matter if it’s published or not). I understand what he means by that, especially since so many times he’s reminded me how therapeutic the simple act of writing is. The knowledge that I’ll be a stronger person after I’ve uncovered all that has been hidden is another motivator, another push to keep on writing until all I feel is relief and joy.