Tag Archives: Writing My Memoir

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

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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

It’s an everyday battle.

15 Nov

When I started writing my memoir of living with Cerebral Palsy last January, in the back of my mind, I think I believed that I’d be able to write everything out and then I’d feel tons better or that my past wouldn’t control my thoughts so much. No, my Cerebral Palsy doesn’t define who I am. However, I’d be lying if I said that it didn’t have a constant effect on my thoughts. When I first starting writing out the hard memories, it hurt, but it felt good too. It made me cry to bring up so many memories that I didn’t want to ever look at again, but it also brought me closer to those around me. My mom and I started getting along better. My friendships improved. For the first time, I could honestly say I was completely myself because I wasn’t allowing myself to hide behind the pain that dominated my life for so many years.

However, despite the beginning benefits of writing about my life, currently I don’t always feel like the benefits outweigh the pain that still lingers from my past. Truthfully, this wouldn’t be so hard to handle if things weren’t so physically hard for me lately. I’m falling more, but it’s not even the falls themselves. It’s the fact that I’m able to feel them before they come. My muscles get super tight, I start to walk on my tip-toes, and I get nervous. Since I know that I am about to fall, I become afraid to move. However, the more nervous and afraid I get, the more I tense up, which increases the likelihood that I’ll fall in a number of minutes. It’s heartbreaking, truthfully. Heartbreaking in the sense that I know I’m only 20 years old. I don’t even want to imagine how my muscles will be cooperating 10 years from now.

Even though I may have finally faced the pain and memories that dominated my past, will I be able to deal with the struggles that are in my present just as easily? Will I have to wait 20 more years before I can come to some kind of understanding? Truthfully, will I ever understand? Will any of this ever make sense? On the good days, the days that I’m happy and I have people around who love me, I’m able to stay pretty upbeat and optimistic about my situation. However, on the bad days, the days when I’ve already fallen 4 times and my back hurts, all I want to do is sit on my bathroom floor and cry. Though I know that may not seem like the greatest decision, what do you tell the person who’s been strong for so long? My entire life, the gusto has pushed through. My pure love of life has pushed through. However, as the years go by and the back pain and falls increase, it’s hard to carry that same level of strength. I’m trying though. I’m trying because I want to find enjoyment in my life, and I know there are so many people who love and support me and want to see me succeed.

I think what many people don’t realize is that living with Cerebral Palsy is an everyday battle. It’s not as if I can say, “Oh, my past is behind me. The hard part is over.” Though that may be true and though I am relieved to not have to undergo any surgeries right now, that doesn’t mean things are “easy.” I wake up every morning with back pain. Though I fall asleep best on my stomach and I’m not a restless sleeper, it becomes a problem when I wake up with a stiff back and normally stiff legs. Some days, it’s hard to walk easily. On mornings when I wake up extremely stiff, I debate whether I should crawl to the bathroom rather than risk falling and getting yet another bruise. Even though the bruises normally end up in places that people aren’t able to easily see, that doesn’t mean that they aren’t there. Though living with Cerebral Palsy may be something that I’ve gotten used to just because I’ve had no other choice but to adapt, that doesn’t mean that it’s still not a struggle to simply be happy. In all actuality, it would be so easy to slip into pity and just curl up in my bed and cry. For me, every single day is a battle. But I get back up, even if it means that I’m still crying.

“Mommy, why does she walk so funny?”

9 Nov

I don’t remember the day when I became uncomfortable with myself. I just know that I went from being a kid that wanted to experience every part of life with no regard for the opinions of others to a girl who viewed herself based on the ways others thought of her and treated her. Though I may not remember the specific day when my attitude about myself began to change, I know that it started with the staring.

Being physically different from your peers is especially hard for an obvious reason: since you’re not like your peers, you’re “different,” and being different isn’t “the norm.” Even though I find it sad that the concept of being “different” is primarily a culturally constructed concept that is perpetuated by societal attitudes, it’s not surprising. Due to “differences” being culturally constructed concepts, it makes sense that the act of staring is at the center. The center of making those who are different actually feel different, even if they may not think they are that much different from those around them (at least in the beginning). Having others openly stare at them automatically separates them from the crowd that they are trying so hard to fit into.

In the early days of noticing how others would stare at me, it felt like a punch to the gut, causing me to feel like the easy target, unable to move or even breathe. The moments that hurt the most were those in which my differences were noticed through staring as well as through vocalization. I remember one specific day that I was in the grocery store with my mom. As we came to the isle of milk and eggs, there was a little girl who walked past us with her mother. I watched the little girl as she moved past us, knowing that any second she’d turn around and her eyes would lock with mine, her mouth hanging open in shock and surprise. The girl saw me as she was walking towards me, and the staring began. The stare started at my feet, and the girl noticed the way that my feet pointed slightly inward as I walked. The girl then looked at my legs, focusing on the way that my knees knocked together as I walked. Eventually, the stare landed on my face, and the curiousity that I saw in her eyes was mirrored in my own. By the time the stare reached my face, the little girl couldn’t look away, not even for a second. Even as she and her mother walked past me, she would turn around and look back at me, still holding her mother’s hand but so engrossed in me that she wasn’t paying attention to where she was walking. Then, ever so slowly while trying to keep her eyes on me, she’d turn to her mother and ask, “Mommy, why does she walk so funny?” The words stung, and I walked away before I could hear the mother’s response. I followed my mom through the grocery store, thinking back over and over to the little girl’s question, wondering what the answer was. That simple question as well as the sadness and uncomfortable feelings that were associated with the staring has come back to me on a daily basis throughout my life, and even now, it’s no less painful than that early memory in the grocery store.

In the early days of the staring, if my mom caught someone staring, she’d look at them, smile and say “Hi, how  are you?” Even though I knew that my mom was implementing the “Kill them with kindness” approach, I could never make myself do it. For reasons I can’t quite explain, the stares were such a shock that I couldn’t even speak. Over and over, the stares of little girls and boys, and even adults, seared into me, searching for answers. Since I was as far from the answers as they were themselves, I looked away, not wanting anyone to see the pain that was reflected in my eyes. It wasn’t until I was home in the comfort of my bed with a stuffed animal in my arms that I allowed myself to cry. I allowed the tears to fall over and over, hating the kids who stared at me so much and hating myself for letting their stares have such an effect on me. After I couldn’t cry anymore for the night, I’d look up at my ceiling fan, watching the shadows of the blades reflected on the ceiling, wondering if there would ever be a day when I’d feel normal.

Even today, at the age of 20, the stares still affect me. Though I no longer cry at night because of them, they make me angry. Angry at the people who can’t accept that there are people in the world who look different from them, angry that the parents of kids who are gaping at me don’t explain to their children that it’s not polite to stare, angry at the adults who are in their 40s and still gape at me from across the grocery store, not even trying to hide their surprise at the way I walk. Angry at myself for still being so far from the answers as I was as a child, silently hoping that one day it will all make sense.

The good things about surgery.

24 Oct

What doctors don’t emphasize too much when it comes to surgery is that the actual surgery is the easy part. It’s the intense physical therapy afterwards that kills you. That being said, surgery is still a very scary procedure. Through all 3 of my intense surgeries, I was scared every time. Before each surgery, I had nightmares about waking up during surgery and seeing the doctors putting their hands inside my legs to straighten out my femurs. In my nightmares, I couldn’t speak. I remember screaming as loud as I could to try to alert the doctors that I was awake, but nothing worked. The doctors were too focused on straightening out my crooked femurs to pay attention to the traumatized girl on the operating table. However, thankfully, all of this was a dream. That doesn’t mean that it felt any less real though. I remember countless times when I woke up from this particular nightmare screaming and struggling to look at my legs to make sure they weren’t split open to expose my bones.

Despite the decent amount of fear and uncertainty that accompanied the intense surgeries I had, there were some pluses. First off, before each surgery, I got the autograph of the head surgeon. However, not in the sense that he signed a picture of himself and gave it to me. He signed my legs though. I later learned that he had to sign my legs so that he would be sure to do the correct procedure on the correct patient, and I definitely think that’s important. I didn’t want my femoral derotational osteotomy to be confused with a sex change. However, in my opinion, it’s more fun just to imagine the head surgeon wanting to give me his autograph.

Since the surgeries I had were incredibly intense, I was placed in the ICU following each operation. Though the groggy feeling and getting sick from anesthesia wasn’t fun at all, I had an epidural. Therefore, the pain wasn’t nearly as bad as it would be once the epidural was removed. Also, even though I slept a lot while I was in the ICU, when I was awake and finally ready for food (or when I could enjoy it without getting sick), I got to have as much ice cream and chicken noodle soup as a wanted. I even remember one particular time when I got my dad to go to the Chick-fil-A that was in another part of the hospital so that I could have some chicken nuggets and waffle fries. Though Chick-fil-A is normally incredibly yummy anyway, it was 100 times better after a huge operation. Trust me.

Most people don’t really think of presents when they think of surgery. However, they are connected, especially when you have your operations in a children’s hospital like I did. When I was younger (before all of my surgeries), I never quite understood why people received flowers and other gifts when they were in the hospital because, to me, the flowers didn’t really do much when they didn’t also include sunshine, birds, blue skies and everything else that’s connected with the outdoors. However, when I was in the hospital following my surgeries, the flowers were a comfort. Though it was hard to accept that I couldn’t just go sit outside and look up at the clouds, the flowers were the closest thing I had to being outside, and at that point, I’d take anything I could get. However, besides flowers, I also received tons of “Get Well Soon” cards and all sorts of presents from family, friends, friends of my family and pretty much anyone else who cared about me and wanted me to know that they were thinking of me. Though I don’t remember specific flowers or specific cards that I received, I do remember getting a stuffed animal hippo from my horseback riding teacher, Miss Mary. Though I ended up accumulating many stuffed animals throughout the time I spent at Shriner’s, my hippo is the one that is still very close to my heart since I got him after my very first surgery. He’s been with me through it all (including college), and I know that it will stay that way for quite a while.

Though I don’t recall having any incredibly good-looking doctors like the “doctors” on Grey’s Anatomy, I do remember Ben, one of the physical therapists at Shriner’s that I had a huge crush on. He had red hair, freckles and the cutest smile I’ve ever seen. Even though he wasn’t my physical therapist for an extended period of time, he did spend a few months with me while my regular physical therapist, Beth, was on maternity leave. Even now, it seemed close to perfect that part of my time with Ben coincided with Valentine’s Day. Even in the hospital when you’re feeling all kids of emotional and physical pain, it’s possible to have a crush. Trust me, I proved that. As you can imagine, when Ben gave me a heart-shaped box of chocolates on Valentine’s Day, I was over the moon. I think I may have even squealed a little bit when he handed me the box of chocolates. After all, it was one of the first times in my life that someone other than my dad was my valentine. Although, since I never had Ben as my valentine a second time, I think it was a good decision to stick to having my dad as my valentine from then on.

A conversation with my younger self.

21 Oct

Sometimes I imagine what it would be like if I had the opportunity to speak with a younger version of myself. I wonder what I would say. I wonder what advice I would give to my 7-year-old self, the little girl with the nervous smile who has yet to go through 3 intense surgeries and many, many years of physical therapy. I wonder how it would feel to talk with someone who I knew so well, but yet couldn’t completely relate to since she hadn’t yet gone through all the pain that she would experience in her future. I wonder…

I’m sitting on a bench in a small park that I don’t recognize. There is a playground with swings and a play set, which are all just a few feet from where I’m sitting. Kids are playing in every available space in the park, but I feel like I’m a thousand miles away from their voices. It’s not until I hear her bubbly laugh that I know where I am. As I look over at the play set, she climbs out of the tube slide, practically falling right out into the sand because she’s laughing so hard. A moment later, her eyes lock with mine, and I know. The girl with the nervous smile, bubbly laugh and bright blue eyes is the younger me. However, it’s not until I look down a second later to see the braces on her feet that I’m certain my assumption is correct. Even though my stomach feels like it’s flipped inside out, I get up from where I’m sitting and walk towards the younger me.

“Hi, can I play with you?” I ask. She looks up at me with the hugest grin on her face.

“Yes, but only if we sit right here in the sand. I don’t really want to get up.”

“That’s perfectly fine, Amelia,” I say, as I sit down in the sand beside her.

She is focused on putting her arms as far down into the sand as she can, so it takes her a moment to realize what I said.

“Wait, how did you know my name?”

“Because I’m you. I’m you at 20 years old. We are the same person.”

The younger Amelia looks at me quizzically for a second, and then asks, “Does this mean that we can be friends?”

I can’t help but laugh as I remember what I was like when I was younger. Even at the age of 7, I wanted acceptance. More than anything, I wanted friends. Though those two things are something that I still find myself longing for, it was intensified when I was younger. It was often the only thing I could think about since it held such a strong connection to being just like the other kids, the “normal” kids.

I find myself staring with amazement at my younger self, wondering where to even begin.

“You have a wonderful best friend waiting in your future. In fact, there are many, many friends that will be in your life. However, the one I’m referring to, she’s everything you’ve ever hoped for in a best friend.”

“Why can’t she be here now?” the younger me asks.

“She hasn’t met you yet. She won’t come into your life until you’re 16, but I promise you, she’s the kind of best friend that you have always wanted.”

Instead of concentrating on playing in the sand, I now have the attention of my younger self as she looks up at my face with curiosity, so I continue.

“You’ve got a long road ahead of you, and it’s not something that anyone is going to able to prepare you for. It’s going to be incredibly hard. However, trust me when I say that you can get through it. It’s going to feel close to impossible some days, especially on the days when the pain gets really bad, but I promise you’ll get through it.”

The younger me then looks down at the braces that are on her feet and touches the plastic ever so lightly with her fingertips.

“I’m scared,” she whispers softly.

“I know,” I say. “It’s okay to be scared.”

“You’ll get stronger,” I tell her. “It may seem overwhelming now, but eventually it becomes like second nature. You’ll fall, time and time again. But you know what’s amazing about you?”

The younger me looks at me expectantly, but I know her nervousness lies just below the surface.

“You get back up…every time,” I say.

“Why? Why do I have to keep trying?” she asks.

“Because it’s the only way you can move forward. It’s the only way you can be independent.”

Even though I see the younger me roll her eyes at me, I know that my words are impacting her because she takes my hand and squeezes it. As her fingers link with mine, I am overcome with love for the little girl who has yet to know the intense pain that she will face. I have to look away from her before she realizes that I’m crying. As I wipe away my tears, I look off into the distance to see the sun setting behind the trees.

“I have to go soon,” the younger me says.

I nod, unable to say anything. I don’t know if I’ll be able to walk away. However, I say the one thing I’ve wanted to tell her all along.

“I love you. So so much,” I say, letting the tears fall and knowing that the younger me doesn’t grasp the magnitude of this moment. If only she knew that I would save her from all of this pain if I were able to. However, deep down, I know that I can’t do that. She has to go through it. She has to go through it if she wants to become me.

She hugs my legs tightly, and the warmth of her small body against my own makes me smile.

“I’m so happy that I get to be you when I get older,” she says.

She turns to go, and as I watch her walk away from me, her last words weigh heavily on my mind. Though she may want desperately to be me, I know that I need to remember to be her as well. I know that little girl is still within me, and she is showing me just as much love as I wanted to be sure and show her.

Diving below the surface.

6 Oct

I want people who write to crash or dive below the surface, where life is so cold and confusing and hard to see. I want writers to plunge through the holes—the holes we try to fill up with all the props. In those holes and in the spaces around them exist all sorts of possibility, including the chance to see who we are and to glimpse the mystery.-Anne Lamott

Today, I finished reading Anne Lamott’s book, Bird by Bird: Some Instructions on Writing and Life. This quote from the book really stuck with me. Over the past few months, I’ve been drawn more and more to books about writing and what it takes to be a writer. Though I don’t read the books in order to remind myself why I write, I do read them in order to remember that many of the emotions that I feel as a writer don’t enclose me. Rather, they allow me entry into one of the most special worlds I’ve ever known: the world of writers.

I first began to write because I felt like no one understood what I was feeling. Writing was the way that I could be completely myself without having to explain why I felt or didn’t feel certain emotions. As I sat in my childhood bedroom at the age of 8 with a journal and pencil in hand, I realized that I didn’t have to hide. I could pour my entire self into my words, and the only person who had to read those words was me. However, more recently through this blog, I have started to understand the strong sense of community and belonging that I’ve been looking for for so long. It’s been right here, waiting for me to discover it. The world of writers is one that is very hard to explain to those who aren’t writers. However, for those of us who are writers, we know what our world is like. We wake up in it every morning. We plunge into it on a daily basis when we sit down at our computers to write out what is itching to be released. We know what it’s like on the bad days when the words won’t come, when it’s too pretty outside to sit in front of a computer that holds the daunting blank Word document. However, we also know the joy of the little victories: completing a chapter, getting an article published, the sense of relief that comes when another writing project is finished. Even though those little victories can keep us afloat for longer than we imagined, it’s the recognition we want. I don’t mean being the next New York Times Bestselling author or making millions of dollars. I mean being told by one single person that our words have touched them or helped them in some way. That’s the prize, “the big kahuna.” It’s what keeps me coming back to my desk, day after day, to share my story.

I haven’t opened the Word document that houses my memoir in a matter of months. Even though I could use the excuses of college classes, friends, work and other random responsibilities that pop up for juniors in college, I’d just be fooling myself. I’m naturally an introspective person. However, the kind of introspection that my memoir has involved has brought me face to face with memories that I never thought I’d have to experience again. However, for many writers, that’s what writing is. It’s facing our demons and learning to accept them so that we can move on to a better and more fulfilling life. I know from experience that it’s incredibly hard. It’s one of the hardest things I’ve ever done. I keep trudging along though. I keep on “diving below the surface” of my life for the chance of impacting just one person, for the chance to be part of the reason that they feel even just a little less alone.