Tag Archives: Physical Therapy

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

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)

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.

Own your story.

20 Apr

Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.-Brene Brown

When I came across this Brene Brown quote a few days ago, I couldn’t help but realize how much it applied to my certain circumstances. Not just the overall situation of living with Cerebral Palsy, but the more recent circumstances of realizing that I must now face the emotions which resulted from my recent return to physical therapy. Though it would be so much easier to resist thinking about the emotions and memories that returning to physical therapy brought up for me, I know that I must face them if I’m going to be able to move forward.

Throughout my life, I have heard people tell me how awesome it is that I don’t let my CP define me. According to my CP doctor, I “make it look easy.” Though I do understand that most people are trying to compliment me, it’s also hard for me to believe them in the full sense of the phrase. Though I don’t ever introduce myself as “the girl with CP,” I often wonder if that’s what others are thinking, specifically people I have just met. Overall, I try not to let myself focus too much on all of the difficulties it brings, because if I did that, how the heck would I still be able to find joy in the little things? However, at the same time, my CP affects me on a daily basis. Every day is hard, and every day I am reminded of how different I am from those around me. At the same time, I am reminded of how far I’ve come, and that’s where “owning my story” comes in.

Though I began writing my memoir in order to help myself come to terms with what I’ve faced and to help others in similar situations, I have also just wanted to shed a light on just how many of us are struggling in ways people may not truly understand. Putting all the benefits and support aside, “owning my story” through writing about it and essentially saying “Yes, this is who I am, and I am damn proud” has been the most frightening, scariest, most frustrating and overall hardest thing I’ve ever done. In all actuality, it sucks, but it’s helping me. Truthfully, it reminds me of the idea that you’ve got to hit rock bottom before you can truly understand your own strength. It’s cliché, but it’s also true. In many ways though, I feel as if trudging through this first draft of my memoir is similar to hitting rock bottom, over and over again.

Despite the frustrations of “owning my story,” it’s my way of being the voice of so many others who aren’t able to express what it’s like living with a disability. If writing my memoir means I can give a voice to a few of those people, then I will plunge into the darkness of it. Just because there are people who aren’t able to express the emotions connected with what they have experienced doesn’t mean that they shouldn’t have a chance to still be heard. If anything, all of those people deserve it a little bit more. After all, every one of us has so much to learn from each of the people we come into contact with, so why not start by owning the experiences we’ve faced, no matter how scary and painful?

I’ve returned, and here’s why!

16 Apr

IMG_4678

After over 2 months, I’m back. However, before I go into why I’ve returned, I thought I’d fill you in on what’s been going on in my life recently.

During the months of January, February, and March, things were rough for me physically. I was in more pain than normal, I was falling more than usual, and it was incredibly frightening. I felt like I had slipped back in time. Despite my initial resistance, I contacted a local doctor in Asheville who deals with CP in adults (which, in some ways, seems like some kind of Mecca). However, I was afraid, understandably. I didn’t know if I wanted to hear what the doctor would have to tell me regarding my disability. I didn’t know if he’d mention surgery or botox. I just knew that I wanted answers, but I was scared to know what they truly were.

Due to my anxiety connected with going to this new doctor, I had my parents come with me as moral support, and I knew they’d want to hear what the doctor had to say anyway. What was the verdict, you ask? Baclofin (an anti-spasticity medication to hopefully lessen the increased spasticity) plus regular physical therapy and pool therapy for a period of 6 weeks. Even though I was happy about the Baclofin since I had never taken an anti-spasticity medication and was interested in how it would affect me, I was much less excited about the physical therapy. I remember leaving the doctor’s office that day in a weird haze. Once I got outside, I started to cry. Physical therapy? Again? Wasn’t 15 years enough? I couldn’t even seem to wrap my head around it. I was scared and for good reason. I had more than a lifetime of memories from physical therapy to write multiple books on the subject, and I wasn’t looking forward to returning…at all. However, after talking it through with my parents and numerous friends, I realized that this was ultimately my decision. If I tried the physical therapy again, and I wasn’t getting anything out of it, I could stop…just like that. With that understanding, I made the decision to go ahead with the physical therapy and the pool therapy. After all, I was in a crazy amount of pain. If there was any chance that physical therapy could help, why not give it a try?

My PT evaluation (before I even started back with PT exercises) felt like stepping back in time. I felt like a kid, walking into a place I knew would result in me being in tears in an hour. My anxiety was sky high, and I was terrified. For my entire life, physical therapy was associated with one feeling: pain. I didn’t understand why I had decided to place myself in that environment again…and willingly at that. The fear came back full force when the physical therapist asked me to bend one of my knees back as far as I could. I have always been incredibly hesitant to bend my knees due to a painful experience during my intense physical therapy following one of my major operations. Therefore, the slight mention that the physical therapist may be planning to “try to get those knees to bend” had me terrified. Though when I left that day, the physical therapist assured me that I was in control and they weren’t there to hurt me, I just looked at her. Up until that point, I had never really had the say-so regarding my physical therapy, mainly because my previous experiences with PT occured when I was still a child and the primary goal was to get me up and moving so that I could be as independent as possible.

As the weeks went on, so did the physical therapy and the pool therapy. I also continued to take the Baclofin. I started to like the pool therapy, simply because it was a less intense version of physical therapy. Therefore, I felt like I could actually relax. The first regular PT session following the first evaluation wasn’t enjoyable like the pool therapy though. The exercises I was asked to do gave me flashbacks to previous physical therapy sessions in my past, and it was incredibly overwhelming. At one point. I even started to have an anxiety attack. I couldn’t seem to get the feeling of pain out of my head, though I wasn’t in pain during the present moment. It just felt close. The rest of the day following the PT session in which I had the panic attack was rough. I cried off an on throughout the day, and painful memories from my past PT didn’t seem to want to leave me alone. Though I was incredibly anxious to return to PT following that rough day, I did. I explained how the previous PT session deeply affected me and caused me to be really upset. Thankfully, the physical therapist responded well to my anxiety and told me that she’d find other stretches I could do that wouldn’t cause me so much emotional stress.

Last week, the 6 weeks of physical therapy and pool therapy came to end. Though I was glad that the physical therapy had provided me with some exercises to implement into my current workout, I was happy to be done. I was happy to actually get discharged from physical therapy. I’m also still continuing to take the Baclofin, the anti-spasticity medication. Though I haven’t seen immediate changes, I have noticed that I haven’t fallen in a number of weeks, which is huge since I was falling multiple times a week prior to starting the PT, pool therapy, and Baclofin. So that’s where I am as of now, taking it one day at a time.

However, the main reason I’m back doesn’t have to do with physical therapy or being in pain. I’m back because a week ago I received news that the post I wrote last May for Holstee is going to be included IN A BOOK. Though I’ve been published numerous times before (online and in newspapers), there is something so incredibly about the idea of being published IN A BOOK. The My Life Book is still in its early stages, so I don’t have any information about when the book will be published, but I will definitely keep all of you posted. The interesting part is that when I was informed that my story would be included in the book, the suggestion to edit the article since it has been almost a year since it was published was thrown onto the table. I’m somewhat torn, however. A lot has definitely happened in the last year, and since the article I wrote for Holstee involves talking about how I’m writing my memoir of living with CP, it would make sense to include the struggles I’ve been dealing with most recently. However, I also know that it could be hard to limit all of the explanation to just one article. Decisions, decisions. Either way, things are looking up!

Now, what’s being going on with all of YOU? Two months doesn’t seem like too long, but it’s felt like an eternity. Either way, I am so happy to be back!

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

The search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.

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.