Archive | January, 2013

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.

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The Newtown Music Project.

15 Jan

I just came across this video after seeing the song by Ingrid Michaelson and the Children of Newtown on iTunes, and I can’t stop crying. Though no amount of words can express the beauty of the idea, I just think using music as a way for the Newtown children to send love to those they have lost is so incredibly special. It does not seem like a month has passed since the Sandy Hook tragedy, and my heart still aches for the families who have lost loved ones.

I have always been amazed at the healing power of the arts. Whether it’s writing a story or singing a song, there is something incredibly powerful about using art as a way to release your emotions, while also finding a way to grieve and very slowly attempt to move forward (but never forget). Though I know there is nothing anyone can say to the families of those who have lost children they love due to the Sandy Hook tragedy, I only hope that in time they can embrace projects such as this to feel the love and thoughts so many others are sending their way.

And to the sweet, sweet children lost in the Sandy Hook tragedy, this song is for you. I only hope that maybe you are in fact…somewhere over the rainbow.

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

I’m back!

7 Jan

No, the break wasn’t long. However, yes, it was needed. Though I’m still in the stage of adjusting some things about my current life that had previously been on the back burner, I realized that I didn’t want this blog to be kicked to the back of my mind like so many other things. This blog has helped me too much to be at any place other than the forefront of my thoughts (right alongside academics, friends, and family).

One of my goals (not resolutions, but goals, or something I expect to stick around and even grow) for this year is to complete a rough draft of my memoir by the end of 2013. That being said, I am planning to spend as much time as I can to writing my memoir, which means my blog posts will no longer appear daily. I’m thinking of going bi-weekly or even weekly so that I actually might have something to say rather than feeling like I’m constantly rambling on about nothing. Though in the past I have shared certain memories related to my Cerebral Palsy on this blog (and have worked them into my memoir), I primarily began doing that because I was in need of support and feedback. Thanks to all of my lovely followers who have provided just that. However, now that I am beginning to not exactly need the encouraging feedback quite as often, I think it would be best to restrict my written memories to the Word document of my memoir. It seems safer that way. Plus, then my number of pages of my memoir might actually increase (hey, imagine that!). However, that doesn’t mean I won’t still be talking about my writing or what I’m facing on a daily basis in regards to my CP. I’ll still be sharing those snippets, and on those hard days when life just seems to knock me to the ground, every ounce of encouragement from all of you will be just what I need.

As the New Year came and went, I realized how often I was telling so many people: “I’m writing my memoir!” without actually doing much about it. Though I am not necessarily planning to give myself a deadline (good writing comes in time), I do want to move forward with my memoir. I’ve been in a pretty huge rut for quite a while, and even though I have never been a fan of outlines (normally, I’d prefer to just write, write, write and not care where it was doing), I think using an outline could provide me with a greater sense of direction in regards to my memoir, which is exactly what I need at this point. I don’t know how much it will help, but I’ll just have to see I guess.

Along with writing comes reading, and I have written numerous book reviews on this blog in the past. Today I signed up for GoodReads (and have decided to enter a Book Reading Challenge). My goal is to read 100 books in one year. Though that seems like a bit much right now, I know how much I read. And if I don’t complete the challenge, oh well. I just know that I will need a way to balance out all the writing I’m planning to do (plus college classes and friendships). Also, I think all the reading will be a nice break from focusing so heavily on my own life through writing my memoir. I think it was Stephen King who said: If you don’t have time to read, you don’t have the time (or the tools) to write. Simple as that.”

It will be one heck of a year filled with tons of writing, tons of reading, academics, and as much fun as I can squeeze in! Thank you to all of you who have continued with me on this journey, despite the fact that this blog has changed its focus so many times. I appreciate each and every one of you so much!

“Writing and reading decrease our sense of isolation. They deepen and widen and expand our sense of life: they feed the soul. When writers make us shake our heads with the exactness of their prose and their truths, and even make us laugh about ourselves or life, our buoyancy is restored. We are given a shot at dancing with, or at least clapping along with, the absurdity of life, instead of being squashed by it over and over again. It’s like singing on a boat during a terrible storm at sea. You can’t stop the raging storm, but singing can change the hearts and spirits of the people who are together on that ship.” – from Bird by Bird: Some Instructions on Writing and Life by Anne Lamott