Tag Archives: Life

Where lifeintheblueridges has been, and what’s next!

6 May

It’s been quite a while since I’ve written a blog post, and that’s mostly because I have been focusing solely on my final year of college. As of last Thursday, I completed my last final exam of my undergraduate career. I’ll be graduating in just 4 days with a Bachelor of Arts in Psychology. I truly can’t wait to have that diploma in my hand and have my family and friends around me to celebrate!

Go confidently in the direction of your dreams. Live the life you have imagined.-Henry David Thoreau

What’s next in my life: Graduate school! Starting in August, I will attend UNC Charlotte’s MSW (Master’s of Social Work) program, and I truly can’t wait! One of my dreams of helping others is finally going to be coming true, and I am so ready for the journey ahead. Though it will be sad to close the UNC Asheville chapter of my life, I am anxious to start the next phase of my life in a new city which holds new opportunities and the chance to bring more wonderful people into my life. What could be more wonderful than that, you ask? Well…finally getting to focus solely on what I love and long to do for the rest of my life: helping others (hopefully the special needs population).

Don’t ask what the world needs. Ask what makes you come alive, and go do it. Because what the world needs is people who have come alive.-Howard Thurman

Where lifeintheblueridges has been: Since its creation in November 2011, this blog has been an incredible gift to me in so many ways. Within the first few months of starting my blog, I connected with many people like me, aspiring writers. More than that, though, I was welcomed with open arms into a community I never knew I needed. Because of constant support and encouragement from those who knew me not personally, but simply through my writing, I finally reached a point in which I was able to start something I never thought I’d be able to do: the sharing of my story of living with Cerebral Palsy. In January of 2012, I began receiving positive feedback from fellow bloggers and connecting with others who either have Cerebral Palsy or another disability or know someone who does. Because of all the positive feedback, in January of 2012, I started writing my memoir of living with Cerebral Palsy. If it hadn’t been for the encouragement from the blogging community and other friends, I don’t know if I would have ever had the courage to open up about my experiences of living with CP. Since opening up, however, I have connected with so many people who’ve told me to keep on sharing. More recently, I’ve also been giving talks to elementary and middle schools in Buncombe County regarding my experiences of living with CP, and more specifically, the bullying experiences I had as a child as a result of my Cerebral Palsy. I am incredibly grateful for the opportunities I’ve received to talk with so many kids about disabilities and bullying, especially because they have allowed the kids to learn more about what it’s like to live with a physical disability and it’s given them the opportunity to ask any questions they want about me and my disability (which I fully support since I know there are so many kids who are curious). Overall, through this blog, I have gained the courage to open up about my experiences and have developed the desire to share my story with others. However, I’ve also gained encouragers, supporters, fellow writers, beta readers fellow CPers, special needs parents…or more precisely, a community of people that is cheering me on currently and will continue to do so even after my memoir is eventually published (or that’s what I hope, anyway).

Where lifeintheblueridges is going: Beginning this July, I will no longer live in Asheville…no longer will I be nestled among these mountains I love. Therefore, the beloved lifeintheblueridges will be ending after this post. In the coming months, I’ll no longer be a college girl in Asheville. I’ll be even more than that…a graduate student in Charlotte! Therefore, though this blog has provided me with more than I ever thought possible…I’ll be creating a new blog, especially because I am about to close one door and open another. I am incredibly excited to begin a new blog journey, a blog that will solely focus on writing about my experiences of living with CP. Since this blog helped me to open up about my experiences, there’s NO WAY I’m going to stop sharing my story and writing my memoir. I hope to be sharing my story and the writing process of my memoir even more on my new blog!

*As of right now, I am not sure when my new blog will be up and running, but I will make one more post on here once the new blog is live so that everyone can continue following me and my story.*

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.

Why I Love Working With Dying Children.

2 Dec

I read an article recently by a woman who teaches poetry and prose to dying children. Throughout the article, the author regularly mentioned how a certain little boy’s death would one day prevent her from ever returning to work. That little boy became another little girl who became yet another child. They all faced something we don’t talk enough about: death. Eventually, the author mentioned how this work contains so much sadness and fragility, and yet it is also the work she could never dream of walking away from.

Ever since August of 2013, I have been interning with Arts For Life, a NC-based non-profit organization focused on teaching art to children and families battling serious illnesses and disabilities. Specifically, I work with two populations of children: children undergoing treatment for cancer and other blood disorders and children undergoing physical, occupational, or speech therapy. I began this internship for a variety of reasons. However, the main one was due to my previous hospital experiences. As a child, I had to undergo three intense surgeries, which later included intense physical therapy, and I spent all this time in the hospital. During this time, the one bright spot in all the days of physical pain, tears, and uncertainty was the weekly craft nights. For one hour every week, I got to focus on making an art project rather than dwelling on how much pain I was in, which exercises I needed to do, or an upcoming surgery. Having a chance to put all my energy into something completely outside of myself helped to decrease some of my anxiety. Some of those nights, I dare say I might have even been happy. Due to my enjoyable experiences with art projects in the hospital, I knew I wanted to provide these same opportunities for other kids in the hospital.

Ever since I started teaching art projects to kids in the hospital, I have loved every minute of it. I love seeing the regular kids every week who have finally gotten used to me and will come up and just start talking. I love watching the kids burst with creativity, coming up with an alternative project I hadn’t even considered. I love seeing the smiles on their faces when they finish their project and run to show their parents. I love finding new ways to teach the children. However, more than anything, I love being able to take in all the different lessons they’ve ended up teaching me without even knowing it.

They have taught me the true meaning of strength. They have taught me what it means to not let an illness define you. They’ve taught me how “art” and “perfect” are rarely in the same sentence, and that’s perfectly okay. More than anything, they’ve taught me the importance of noticing the small things. One little girl I know is battling cancer, and yet she is one of the happiest little girls I know. She smiles, she laughs, and she plays. Most importantly, she does one thing I believe we often forget. She notices every moment: every smile, every time of laughter, every speck of blue sky. She absorbs every single piece of life, soaking it all in. I try more and more each day to live like her, but I’ve got a long way to go.

Numerous friends have asked me how I am able to be around kids who are dying. And you know what my response is? “How could I not?” These kids need me. They need the chance to be able to fully express themselves. They need a positive person in their lives who can bring something good into their hospital experience. They need someone who cares. A few years ago, I never imagined that person could be me, and yet, here I am.

I have yet to lose one of the children I teach. The more I read the article written by the woman who teaches poetry and prose to dying children, the more I’ve begun to understand that we all deal with death in our own way. How I react to losing a child I teach may not be the same way one of the child’s nurses might react. That being said, the important thing to remember is even if I lose I child I teach, there are still tons of other children who need me. Though one day may feel quiet as I mourn the loss of a particular child I cared for, there will be more children coming to clinic the following day, and I need to be the best I can be for them. Being sad around them isn’t my job. If I’m sad, they’ll get sad. That’s why positivity is so important.

Teaching art to children with serious illnesses and disabilities is not easy, but it is the first thing I’ve ever done that’s given me a deep sense of purpose. Seeing the smile on a little boy’s face means I was part of his happiness. Having a little girl cling to my leg begging me not to leave warms my heart more than she will ever know. I just hope one day these children will know how much they have changed my life.

Be kind, for everyone you meet is fighting a hard battle.-Plato

Disability Discrimination: A Problem We Need to Talk About

15 Nov

This week, I gave a presentation on disability discrimination in one of my college classes. I had been doing research for the past few months, and I enjoyed bringing this problem to light since it is very personally relevent. Therefore, I knew I had to share it with the blogging community as well

The Americans with Disabilities Act defines an individual with disabilities as someone who has a physical or mental impairment that does not allow them to perform one or more major life activities, and disability discrimination is the act of not viewing individuals with disabilities as fully functioning members of society whose voices deserve to be heard.

Disability discrimination occurs most commonly in the workplace, and it stretches across many different disciplines as well, such as psychology, law, and education. Within the field of psychology, discrimination is harmful for individuals with disabilities because it may lead to feelings of isolation, anger, depression, or anxiety. Within the field of law, disability discrimination is the least discussed type of discrimination law. Furthermore, within the field of education, the presence of disability discrimination perpetuates the feelings of exclusion found in school systems. Disability exclusion also increases fear aimed towards individuals who are different.

(from The Today Show)

The problem of disability discrimination is serious, and it influences individuals with and without disabilities. There is not just one group at fault. Each one of us is responsible for the persistence of this problem, and it is a problem that deserves to be discussed in order for individuals with and without disabilities to feel comfortable in the world in which they live.

But the question is: What can we do?

  1. At an individual level, we should strive to understand that instead of disabilities being something that causes these kinds of individuals to be seen as less deserving of being heard, the differences should be seen as a contributing factor to create a unique society with more perspectives available.
  2. At a university level, disability awareness events could be very beneficial. By providing awareness to disabilities, college students and faculty may be able to better understand the struggle of living with a disability, visible or invisible, which they may not have otherwise been exposed.
  3. We should use person-first language: “individual with disability” rather than “disabled individual.”

Disability discrimination is a serious global and ethical issue within our society today. Since I have a physical disability of Cerebral Palsy, I can attest to the importance of inclusion. My experiences of exclusion made me stronger, but the times I felt included helped shape me into who I am today.

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Autmn in the Mountains

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.

To those who taught me to dream.

2 Jul

When I was little, I wanted nothing more than to be a ballerina. Around Christmastime, my grandmother would take me to see The Nutcracker at the Koger Center. As I sat up in the balcony in my checkered dress and patent leather shoes, I stared with admiration at the character of Clara. I imagined myself twirling around in my own leotard with a toy nutcracker in my hands, lost in the music and a dance that was all my own. When I got home from seeing The Nutcracker, I’d put on my leotard and tutu, grab a favorite stuffed animal at the time, and twirl in circles to the music only I could hear.

It was in those moments, in the safety of my childhood bedroom, that I began to dream, imagining doing things I knew I wouldn’t be able to do in reality due to my disability. I imagined dancing with a grace I had seen only in ballerinas. I put on my ballet shoes and twirled until my unstable balance got the best of me and I fell to the floor in frustration. I even remember asking my parents if I could take ballet lessons, determined to learn how to create the beauty I had seen in the character of Clara. The opportunity never arose though, simply because I didn’t have the balance to be a ballerina. Despite walking on my tiptoes, twirling around in circles on those same tiptoes was out of the question.

As I got older and I filled my head with more realistic dreams, I never stopped imagining doing the things I’d never be able to fully experience. I thought of dancing to the music of my world. I imagined running down the street and feeling the wind on my face as I chased the orange and red sunset I saw in the distance. I pictured myself climbing the huge oak tree in my backyard, wanting nothing more than to find a sturdy limb I could sit on so I could rest my back against the tree’s broad trunk and escape into my favorite book. The creative imagination I possessed placed me right into the worlds I dreamed, though I knew I was so far away from actually experiencing them.

I am forever grateful to the people throughout my life who have encouraged my imagination and dreams. Though I was constantly reminded by other kids around me of the things I was unable to do, so many of the adult figures in my life understood the importance of believing in my creativity. Because of those individuals, I have learned what it means to still hope and strive for the things that still seem a bit out of reach. Through my ability to dream, I developed a determination that has propelled me through my life, despite stumbling again and again. While I may not have had the chance to be a ballerina who twirls endlessly with the grace of a perfect melody, I have sung my heart out at a voice recital, capturing an entire room with the simple sound of my voice. I have participated in theatre productions, achieving my moment in the spotlight by being Glinda the Good Witch in The Wizard of Oz. I have written of specific moments of pain during the months following intense operations, creating the same tears in the eyes of my readers that I possessed during my moments of defeat. Though I may not have had the chance to live the experiences I longed for, I have continued to move to the song of my own life, continuously grateful to those who taught me to dream and create my own destiny.

A conversation with my younger self: Part 2.

1 Jul

Eight months ago, I wrote a blog post titled “A conversation with my younger self.” In this blog post, I talked with my 7-year-old self and tried to tell her the things I imagined she needed to hear at the time. Things like, “You are not alone,” “The pain won’t last forever,” and “I love you.” More recently, I’ve come to the understanding that I need to become closer with my younger self. I need to sit down and talk with her again to find out what she needs. By doing this, I might be able to figure out what it is I need right now. That younger self is a part of me (though she may currently feel very far away), and I think she might need me as much as I need her right now.

I’m standing in front of a hospital room door in a place that is all too familiar: Shriner’s Hospital for Children in Greenville, SC. I spent enough time here as a kid, and the familiar sights and sounds are a tad too close for comfort. However, the distant hum of the air hockey table in the lobby brings a small smile to my face as I remember how, on the good days, I played as many games of air hockey as I could before becoming too tired.

Nurses walk past me bringing various things to other children on this hall. I look at the door I am in front of, knowing I am meant to go inside. I place my ear against the door to try to hear any kind of conversation, but all I hear is crying. I take a deep breath to try to calm my nerves. My younger self is inside that room, and she needs me. Before I can talk myself out of it, I turn the knob and walk in.

Upon entering the room, it appears that all the lights are off. It’s not until I make my way to the far left corner of the room that I see a fiber-optic Christmas tree radiating different splashes of color onto the wall behind it. My younger self is curled up onto her side and watching the colors change. She holds her stuffed hippo tightly against her chest, her arms constricting and relaxing around him as she cries.

“Hey Amelia,” I whisper as I stand at the end of her hospital bed, hoping I don’t startle her.

She looks up, blinking a few times before making the connection, and then turns back towards the red and green lights.

“You told me before that it would be okay,” she says.

I look down at my feet, remembering the first conversation we had in the park when she was 7. I didn’t know how to discuss it then, and even now when she’s 12, I continue to find myself at a loss. How is it possible to discuss a pain so raw and true while at the same time trying to be comforting and reassuring?

“I’m sorry. I didn’t want to scare you,” I tell her.

She glances quickly towards me, and before she turns away, I notice the tears in her eyes. I sigh, knowing her pain so well. I walk around to the side of her bed, pulling up a chair so that I can sit beside her.

“The nightmares are almost as bad as the actual pain, and then the spasms wake me up, and it’s like I’m living the nightmare,” she says.

“I know it’s scary, and I know it hurts. But it’s okay to cry. I’m right here.”

Without thinking, I place my hand on her head, carefully brushing back her curly brown hair so that I can see her face, her blue eyes. As I look into the eyes of my 12-year-old self, I see it all: the pain, the loneliness, the fear…and for a few seconds, I feel every piece of it all over again, even the spasms that seemed to come out of nowhere. I touch my own scars as I remember, and it isn’t until I feel the pressure of her hand wrapping around my wrist that I look up. She’s staring right at me, and her hand is wrapped around my wrist so tightly that I can tell she’s trying to picture the long road ahead of her.

As her eyes move back towards the changing lights on the fiber-optic Christmas tree, I crawl into her hospital bed, allowing her body to curl up against my own. As she holds tightly to my hand and we stare together at the lights changing from red to green to blue, I hug her against me, remembering how much I longed for an older sister who would hold me during those scary and lonely nights of spasms and nightmares.