Tag Archives: Pain

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.

Image

Autmn in the Mountains

Finding Determination Through Fear.

19 Oct

A few days ago I was talking with a friend of mine, and he asked me to explain my absolute worst fear in life. Though some classic answers popped into my head, like ending up alone and losing the people I love, I knew my absolute worst fear. I tried to say it, but couldn’t. I felt like I was about to cry. However, after a period of silence stretched over us like a blanket, I finally spoke.

“I’m afraid of the day when I’ll no longer be able to walk.”

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 21 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.

At the top of Max Patch (October 2013)

At the top of Max Patch (October 2013)

Being Bullied: The Effects that Can Last a Lifetime.

9 Oct

About two weeks ago, I randomly received an email from a woman who works at an elementary school in Asheville. She informed me she had received my contact information from the program director of Easter Seals in Asheville who spoke very highly of me. She then told me there is a book club at the elementary school, and in the book the children are reading, the main character has Cerebral Palsy. Based on the high remarks she received from the Asheville Easter Seals program director concerning me, she asked if I’d be willing to come speak to the third through fifth graders about my experiences with CP. Specifically, she asked if I could speak about my experiences of being bullied during my school years.

The email was completely out of the blue, and I was stunned. To have received this kind of opportunity without searching for it is incredible, and I am excited for such a wonderful opportunity. However, the tricky part comes with the focus of the talk: my bullying experiences in school.

It is safe to say my bullying experiences were the worst part of my childhood (excluding my intense surgeries and physical therapy, obviously). As a child, I could not understand why I was being targeted out of everyone in my class. I understand now that children are especially curious about those who are different from them. However, I didn’t know why it always had to be me. During those times, I also didn’t understand why I was so different. All I wanted was to fit in, and by getting bullied I stuck out even more.

I got my hair pulled in kindergarten because I had no way of running away, I got pelted with a dodge ball in middle school because I couldn’t move away from the ball fast enough, and every day in gym class, I was picked last. Though I know those experiences helped me to develop a thicker skin very early on in life, many of the experiences were just plain cruel. There is no other way to say it. They resulted in me coming home from elementary school crying to my parents on a daily basis. I cried over more than just the bullying though. I cried over hating I was so different. I cried over not being able to fit in because my experiences were so different from most of the other kids my age. I cried because it wasn’t fair. None of it was fair. I was a nice kid. I smiled at other kids, I laughed with them, and yet I still didn’t ever really fit in with them.

The complex social aspects of school are difficult for any kid. However, they are especially difficult for any kid who may be a tiny bit different from their peers. I only hope to try to convey this to the children I’ll speak to at the elementary school in Asheville. I don’t want to berate them or tell them to stop being mean. After all, they are kids. Kids are curious, especially regarding things they don’t fully understand. I only hope to explain how children with disabilities should be treated just like any other kid. Yes, they are different, but pointing out their differences and excluding them from activities because they are a little bit unique only makes it that much more difficult for them.

Despite growing a tougher skin due to being bullied, I have carried my bullying experiences with me ever since I was a kid. I remember the specific moments in detail. I remember who targeted me, and I remember exactly the way I felt when I came home and cried. I know now that many of my bullying experiences were not intentional. They were just moments of kids being kids. However, that does not mean I still don’t remember the feeling of walking into gym class with my fingers crossed, silently hoping I wouldn’t have to be pelted with a dodge ball by the one girl who always got so much satisfaction out of being the one to hit me.

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.

Why Jodi Picoult Deserves Praise From The Special Needs Community.

9 Feb

One of my favorite authors is Jodi Picoult. I’ve read all of her novels, and I saw her speak in March of 2010 regarding the release of House Rules (and it was by far one of the best nights of my life so far). However, I love Jodi Picoult for more reasons than she’s a great author (I quote her books more than any other author), every one of her books has taught me something, and the fact that she addresses touchy subjects. I also love her because she responds to emails from her fans. She’s said in numerous interviews that she’s the one responding, rather than one of her assistants.

In Jodi’s 2009 novel, Handle With Care, the main character, Willow O’Keefe, has OI, or osteogenesis imperfecta (a genetic disorder characterized by brittle bones that break easily). Even though Jodi discussed a disability that is very different from Cerebral Palsy, I still felt like I was able to relate to much of what Jodi discussed in Handle With Care about what it means to be different and what it’s like to feel so much physical pain on a daily basis. It was a special moment when I realized that my all-time favorite author was writing about certain feelings that I have experienced on a daily basis: the desire to find a place I belong in a society that’s not fully accepting to those who are “different.”

In March of 2009, I wrote the following email to Jodi:

Dear Jodi,

I just recently read the synopsis of your new book, Handle With Care,
and I am very excited to begin it! However, as I was reading your
conversation about Handle with Care that is featured our your website,
something caught my eye. Even though I don’t have OI, I have another
disability, Cerebral Palsy, which has affected my life since I was
young. Personally, I just want to let you know how deeply you touch my
heart with each of your books. You do a wonderful job of portraying
how it truly is for those of us who are different. I can sympathize with the kids you
interviewed that have OI. Even though it may be extremely
rough for them, they are just like any normal kid, and nothing warms
their heart more than when they are actually treated like one.
I am extremely thankful if you actually took the time to read this.
You and your books have made a significant impact on my life. I hope
to one day meet you and let you know face to face how much you have
truly helped me.
Thanks again,
-Amelia

This was her response:

Amelia, kids like you are MY heroes.  I hope you like the book and hope it rings true!
Jodi Picoult

So far, Jodi has discussed disabilities such as OI and Asperger’s (House Rules), and I applaud her for interviewing kids who are faced with the disabilities she has covered because those of us who have lived through the experiences our disability presents are the only people who know what it’s really like. Therefore, Jodi Picoult deserves a crazy about of praise and support from the special needs community for giving a voice to the issues that may have not had much prior awareness or increasing the level of awareness to a more diverse population. Though I still silently hope that one day Jodi will write a novel that has a character with Cerebral Palsy in it, I already have gained so much from the fact that she has written about many of the emotions I feel on a daily basis in regards to my disability.

The Disability Fight: It Never Ends, Does It?

23 Jan

I am still incredibly self-conscious in regards to the physical aspects of my disability. Though I may have reached a point where I am able to talk about my disability with more ease than ever before, I still haven’t developed a sense of confidence when it comes to the physical differences related to my Cerebral Palsy. I shrink away from the differences, silently wishing they were a part of someone else and not me.

When I see the severe curvature of my lower back in a mirror, I cringe. In the summer, when I give in and put on a bathing suit because of the heat, I hate to look down and see the scars on my legs from my intense surgeries. In just one moment, I am transported back to my intense surgeries, all the physical therapy I endured following those surgeries and the nights I’d wake up screaming and in tears because of the pain that seemed to come from everywhere all at ounce. When I am about to walk inside of a building and I see the reflection of myself in a door, I look away. I don’t have to look at my own reflection to know the way I’m swaying side to side as I walk with a visible stiffness in my legs. I don’t have to look at my reflection to know the way my knees still knock inward and the way I’m up on my tiptoes despite the operations I had to straighten my femurs and try to decrease the spasticity in my legs. I can formulate a picture in my head of myself walking that’s so accurate I want to scream. I’d give anything to not know every single detail of how the way I walk is different from how the average person walks. A part of me hates myself for my self-consciousness in regards to my walking. I spent my entire childhood going through intense surgeries and 15 years of physical therapy to reach a point where I could walk on my own without assistance and be as independent as possible. It’s not that I am not proud I can walk. I am. I know I should be jumping up and down on a daily basis because I am able to walk. But I don’t. I just can’t make myself do it.

If you were to ask me whether I’d choose to have CP over not having it, I’d say I’d rather have it because it’s made me into a much stronger person. But if you were to ask me if there’s anything I’d change about myself, I’d tell you that all I want is to look like everyone else. I don’t want to always be the target of stares from toddlers, and even adults, in grocery stores. I want to be able to stop having to cringe at the severe curvature of my lower back or look away from my scars and the pain I remember and still feel. I want to stop having to look away from my reflection because my knees are knocking together and I’m up on my tiptoes. In a way, that’s what all of the physical therapy and surgeries were for. It was to get me as independent as possible, or as close to being like everyone else as I could get. But even with all that work, I’m so far from being where I wish I could be. My balance sucks. I can’t go up or down stairs without a railing. I can’t put on a pair of pants without needing to be in a seated position. And on the days when I think of the things I can’t do and I’ve fallen more than what is normally expected of me during the course of a day, I cry. I cry because it is so, so hard to keep fighting this. No, I am not faced with a life-threatening health problem, so I’m not fighting for my life necessarily. But I’m still fighting just as hard. And it takes every ounce of strength in my body to wake up every morning and make the choice to face it all…again and again, even though all I really want to do sometimes is pull the covers over my head and hide.

The femoral derotational osteotomy: The longest marathon.

14 Jan

I was born with Cerebral Palsy. In my case, I was born with my femurs angled inward and my hips tilted forward, and my angled femurs caused my feet to point in as well. Therefore, as a kid, when I would walk, I’d end up tripping over my feet, which made it harder for me to walk properly. On October 8, 2001, I had my first intense operation, a femoral derotational osteotomy. In some ways, it doesn’t seem like that long ago. The femoral derotational osteotomy was an intense operation in which the surgeons straightened out my femurs in order to allow me to walk straight. Rods were also used in order to keep my legs straight, but they would be taken out the following year once everything had fully healed. Even though the operation itself isn’t something I remember since I was asleep, I do remember the conversation I had with the OR nurses before I was put under. When the nurses looked down at me on the operating table and asked me to tell them about my animals, I proceeded to include the names of my pets at home as well as the names of all of my stuffed animals (and I had a lot). The nurses just smiled. They didn’t seem to mind.

When I woke up in the ICU, I had on two long-leg casts that were connected by a bar in the middle. I also had an epidural, so I couldn’t feel the full extent of my pain. However, those first few days in the ICU were spent not eating as much jello as I could manage, but continually getting sick from the anesthesia that had put me under during the operation. Trust me, having a nurse come over with a tube to suck the vomit out of your throat is completely disgusting, but it’s better than having the full taste of vomit in your mouth by waiting for it to come all the way up. Though I did eventually leave the ICU and Shriner’s after my first intense operation, I had to keep those long-leg casts on for the next 8 weeks, and during those 8 weeks, I became completely dependent on my parents. They had to help me shower, help me go to the bathroom, and help me change my clothes among many, many other things. It was only the beginning of the very long road to gaining my own independence.

In many ways, the femoral derotational osteotomy was the beginning of a marathon that would last much longer than just a few days. It was the beginning of the complete hell I would go through over the next 6 years until I reached the age of 15. By the age of 15, I had endured 3 intense surgeries, 15 years of physical therapy, and more pain that I ever thought possible. However, despite all of that, I persevered. I pushed through because I knew it was the only thing that would allow me to be independent. In the beginning, after that first operation, my parents were helping me do everything. I was completely dependent on them. However, by age 15, I was not only independent, I was gearing up to leave home the following year to attend an all-girls’ boarding school in North Carolina. Though leaving home was and always will be one of the hardest things I’ve ever done (not including my operations and all the intense physical therapy that followed them), it was also the best decision I ever made for myself. As with so many other things in my life, I’ve learned from it all, but more than that, I have been able to better understand the person I am supposed to become. Though I would have never imagined that I’d be using experiences from my own life in order to relate to and lift up other kids with CP and other disabilities, it’s beginning to feel like a permanent place I belong.

In the right hands, a memoir is the flecks of gold panned out of a great, muddy river. A memoir is those flecks melted down into a shapable liquid that can be molded and hammered into a single bright band to be worn on a finger, something you could point to and say, “This? Oh, this is my life.” Everyone has a muddy river, but very few have the vision, patience, and talent to turn it into something so beautiful. That is why the writer matters, so that we can not only learn from her experience but find a way to shape our own. -Ann Patchett, afterword of Autobiography of a Face

When the stars align…with Easter Seals UCP.

1 Dec

Easter Seals UCP is a non-profit organization that supports families dealing with disabilities and mental health challenges. Over the past few months, I have been researching different Cerebral Palsy organizations to see if I could come across any information tailored towards adults with CP. Though I still haven’t found much useful information, I did find Easter Seals UCP. Upon looking at their website and the numerous blog posts by families dealing with disabilities, I was inspired. I was inspired not to focus on my own physical issues at the moment, but instead chose to focus on something that has just been coming to life since I started sharing my story of CP: my role as an advocate.

If you would have told me two years ago that my current primary focus would be using my own story and my personal experience with CP to advocate for kids with disabilities, I probably would not have believed you. I have never imagined that talking about my own struggles would be something I’d be able to do…much less want to do. However, since that is how things seem to have evolved, once I realized there were numerous Easter Seals offices across every state, I knew I had to get involved. The need to get involved led me to find out if there was an Easter Seals UCP office in Asheville, and I found it.

After connecting with some people in the Easter Seals UCP Asheville office through email and phone conversations and getting such a positive response regarding my desire to get involved within the Asheville community, I could not be more excited. At this point, I’m unsure how things will progress. However, after learning that the Asheville office works directly with families in the community, I asked if there had ever been any kind of program implemented that deals with the emotional barriers that a disability presents. Though there isn’t currently a program in place within the Asheville community that deals with the emotional side of disabilities, I told the Easter Seals Asheville office that I felt it would be incredibly beneficial for the community and that I’d be willing to help in any way I can. Long story short, I’ll be meeting with those at the Asheville office to discuss ways in which this kind of program could be implemented as well as general ways in which I can work with Easter Seals as a CP/disabilities advocate within the community.

Words cannot even express how excited I am about this possible opportunity. However, I know that without this blog and the incredibly supportive community of WordPress, I would not have been able to reach the point of talking so openly about my disability and what I’ve faced. For my entire life, I have struggled with the concept of belonging. However, I guess the part of my life that I was trying so hard to escape from was where I needed to be all along. Even though I didn’t have the opportunity to talk with someone who knew what I was going through during the years of my intense surgeries and physical therapy, I want to be that person for other kids with disabilities, and I want them to know they don’t have to go through it alone. Therefore, to all the families dealing with disabilities and the entire Easter Seals community, thank you. Thank you for helping me find another dream to strive towards.

Copyright: Easter Seals UCP.

Copyright: Easter Seals UCP.