Tag Archives: CP Advocate

Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

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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.

Writing: A Thriving Mechanism.

16 Sep

I’ve been in a relatively happy mood over the last week, which explains my lack of writing lately. As strange as it may seem, my desire to write often decreases if I’m in a good mood. I partly think this is the case because for as long as I can remember, writing has been a coping mechanism. I began writing at the age of 8 because there were stories in my head and poems that I felt just needed to be expressed. I continued to write not because I had all these wonderful ideas for stories, but because at the age of 11, my intense surgeries began, which were followed by lots of intense physical therapy. I wrote to let out the pain.

Lately, my desire to write has changed somewhat. I no longer use writing as a coping mechanism. These days, writing is more of a thriving mechanism. Of course, I do have down days, and my writing definitely comes in handy during those times. However, more recently, my writing has been a tool to celebrate what I have overcome. Living with Cerebral Palsy isn’t easy. Even though most people can probably figure that out, the majority of people don’t know what people with CP face on a regular basis. That’s why I strive on a daily basis to share my story with the world. Even though I haven’t written that much regarding my memoir, I still talk about my life with CP on a regular basis when it comes to this blog.

Even though I’ve only begun having a CP focus on my blog since beginning my memoir in January, I can already see the incredible impact that it’s had on me as well as others. In terms of my life, sharing my struggles of having CP has made me happier and has put me on the path of ever so slowly accepting myself. It has also allowed me to realize that I was born to do this. I normally don’t use that phrase because in my head it holds a little bit of a religious connotation. However, all religious connections aside, I do feel like being a CP advocate and sharing my story of living with CP is what I was born to do. That doesn’t mean that it’s the only thing I was born to do though. I love psychology just as much as I love advocating for others with disabilities, and the thought of one day being a counselor for kids with special needs seems like the perfect fit. Then again, I don’t know what the future holds. I’ve got my entire life ahead of me. In terms of my blog, I’ve also seen how focusing on talking about what it’s been like for me to live with CP impacts others as well. Since beginning to discuss living with CP this past January, I’ve received wonderful feedback. I’ve received comments and emails from parents of children with CP who have thanked me for giving them a window into what their child faces. I’ve received a comment from a girl who is facing a lot of the same surgeries in the same hospital that I went through. I’ve had a woman come up to me at a restaurant after overhearing me talk about writing my memoir to tell me that her son has CP and that she fully supports what I’m doing. Even though I have a good amount of benefits that writing my memoir has provided for me, I do it for everyone else. I do it for the kids with CP. I do it for the parents of kids with CP so that they can better understand what their children face. I do it for Grace, a girl I know who has CP, because it’s the only way that I know how to help her. As well as writing my memoir for the families that have been affected by CP, I write about my life for the general public as well. Not many people know about CP, and I know for a fact that not many people know what someone with CP faces on any given day. That’s what I’m here for: to be the voice of every other kid with CP who just wants someone who understands what they’ve faced.

So maybe I don’t have to use writing as a coping mechanism anymore. However, I believe that’s one of the biggest steps that I could’ve made. Rather than being set on writing through pain, I have chosen to focus on the people who I am impacting every day through my words. It is because of all of you that I have decided to continue my writing journey. Someone’s got to be the voice of so many who are currently faced with having to live with Cerebral Palsy. Why can’t that voice be mine?