Tag Archives: My Memoir

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?

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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.

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

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

Almost a year ago…before the writing began.

24 Dec

Since tonight is Christmas Eve and tomorrow is Christmas, I thought I’d share a picture I came across today from last Christmas.

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It’s crazy to think how much can happen in a year. This time last year, the idea of starting my memoir of living with Cerebral Palsy hadn’t come into existence quite yet, and in all actuality, that is hard for me to believe. I remember how, on a cold winter day in January, I made the quick and impulsive decision and said, “I’m going to write a book about my life!”

A few days later, after I had spent many hours just writing, writing, writing without even thinking of stopping, I emailed two very important people in my life: my writing mentor and my freshman English professor from my previous college, both of whom have always been incredibly supportive of my writing. Both of them have always been big supporters of me in general, and so I wasn’t surprised to receive positive reactions concerning my decision to write a book about my life. Though I did receive support from both of them, I sensed hesitation, and truthfully, I’m still unsure if that hesitation was just my own lack of self-confidence coming to the surface or whether it was something else entirely. Either way, at those very beginning days of my memoir, when only the first thoughts of it were being formulated in my mind, I never thought I’d reach the point where I could talk about my past with such ease. Granted, there are definitely memories that still cause me to pause simply because I haven’t quite gotten the guts to pull them out of the black box they have been hidden in for so long, but considering where I was this time last year, I’ve come very far.

Truthfully, it’s because of the support I’ve received from my mentors, friends, family and all you lovely fellow bloggers that I have made it to this point concerning my memoir. Though the amount of pages I have written is incredibly, incredibly slim considering a full year has passed since I began, most of my writing took more mental preparations than I anticipated in the beginning. Though I wrote like crazy in the beginning month of beginning my memoir, that “early fire” started to fade when the emotions of what I was doing began to fully set in. Since then, I have continued battling those emotions, and those battles have taken up more time than I anticipated….time that could’ve been spent writing. However, I needed to give attention to those battles…to all of the emotions that were being brought to the surface after essentially burying huge chunks of my life in boxes in the back of my mind. Therefore, though I don’t have very many pages to show for all that I have trudged through over the past year, if anything….I know what I have finally faced…and what I have grown from.

Therefore, I wish to say thank you for every single one of you who have been a part of the supportive hug I’ve been receiving for the past year. To family, friends, mentors, and fellow bloggers…thank you for sticking with me through the really hard writing days, the really good writing days, and all those days in between when I was either talking about my memoir or talking about a certain memory from my past. Though there is still a very, very long way to go, I know from experience that the beginning of a project…or the simple act of even starting it…is the hardest. Though there were many days throughout the last year that I either debating stopping or could no longer remember why I was putting myself through the pain of writing and reliving the hard parts of my life, I kept at it. I kept at it for you, for me, and for all the families and kids dealing with a disability who just need someone to relate to or someone who understands or someone who they can look to and say, “She made it through. So can I.”

As well as my many thanks and lots of love, I’d also like to wish all of you a happy holiday season. 🙂

Wanting to find my niche of writer friends.

12 Dec

Since starting this blog in November of last year and realizing my own need to share my story of living with CP, I think it’s accurate to say there have definitely been days with no words. Days when I would sit at my computer for hours before a memory would find its way into my mind or I’d realize I wanted to share a certain lesson I had learned. However, I think it’s important to realize that we all have days where we get stuck. Though I’m most familiar with it in terms of how it relates to being a writer, I know the concept of being stuck affects people in different ways.

In my experience, I have gotten over many of my ruts by reading. I imagine it has something to do with having the chance to get out of your own head for a little while to enter the world of someone else’s creativity and writing style. Though it doesn’t always act as an immediate jolt, placing myself into the worlds of other writers allows me to gain perspective as well as achieve a better understanding of the message I want to get across through my own writing.

Last month, when I read Truth & Beauty by Ann Patchett, I spent time imagining how things would’ve been different for me now if I had made the decision to major in English instead of Psychology. Though I love Psychology, I have always had a love of words, literature, and the power of writing. However, I think I ended up choosing Psychology because I knew it would hold many more opportunities for me in terms of a future career than English would. Though I am very happy with my decision to study Psychology, I do miss the English courses I took my freshman year of college. In those classes, I flourished. I poured over the short stories we discussed in class, but since my freshman year was a time in which I took a break from my writing, I wasn’t keen on writing my own stories. Though I knew I had the ability, I was fully content to live inside the worlds of the authors I only hoped to one day emulate.

In Ann Patchett’s memoir Truth & Beauty, writer friends Ann Patchett and Lucy Grealy attended Sarah Lawrence College in Bronxville, New York, to study English. The entire time I was reading of Ann and Lucy’s adventures as English majors in northern Manhattan, I imagined myself in a similar place (not in terms of living in New York, but studying English and being surrounded by others who also had a love for writing). I pictured myself finding my writer friends, forming writer groups and spending hours discussing our own writing projects as well as the works of the authors we hoped to be like. I pictured myself spending hours in bookstores pouring over Flannery O’Connor, only to one day find someone sitting near me pouring over an entirely different book, while finding comfort in the silent conversation we shared. Despite the fact I now live in the artsy city of Asheville, I have not found the writing niche I long for. In some part of my mind, I wonder if I would have found my writer friends easier if I had chosen to be an English major instead, especially since it seems to be an unspoken fact that English majors love to write, read and talk about books. Though I hope to eventually find a group of writer friends my age who are able to fully understand my love of literature and writing, sometimes I just wish I had put myself in a better position to find just that.

Though I know I have a lot of time to “find my niche,” I think each of us longs to be around a group of people who understands us and encourages us to fully embrace the things we love. Though I do have friends my age who fit that mold, none of them are writers. I do remember coming across a Literature Club on my college campus, and that may be a place to start. However, I also know that I’m interested in connecting with others who not only love to read, but have the burning desire to write on a daily basis (and end up doing so, for the most part). So yes, I feel like I would benefit from a niche of writer friends. Maybe all it takes is being willing to go out into the community in search of a writers group. Though stereotypically most writers categorize themselves as introverts and would much rather spend a day inside reading than out socializing with friends (and I definitely categorize myself this way), I think the only way I’m going to find my fellow writers to talk with about books, writing and the deeper complexities of life is just by going out and looking for it. However, that doesn’t mean it’s going to be easy. But who has ever said that something worth finding ever is?