Tag Archives: My Book

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

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.

Well, it was fun while it lasted.

2 Nov

Due to being completely swamped with schoolwork, projects, papers, and all sorts of end of the semester stuff that professors love the throw at us the few weeks before Thanksgiving, I’m going to have to drop my commitment to do NaNoWriMo. Though I’d love to say that I have the time, I truly don’t, and this blog has always acted as just a way for me to let my feelings out. With everything related to college + making time for NaNoWriMo, I don’t have a place for my frustration to go. Plus, I just know that I really need to focus on academics right now. That’s what college is about…plus reading some on the side and making weekly, if not by-weekly, drives on the Blue Ridge Parkway.

Therefore, I’m sorry to those of you who were looking forward to my day-by-day account of NaNoWriMo, but I know that I’ll definitely be posting similar writing pieces throughout the month…just not quite every day. Plus, as I’ve learned since January, writing a memoir isn’t exactly an easy thing. Having to dig up a new painful memory from my childhood to write about each day is just too much right now. Plus, I think it’s also important for me to keep reminding myself that there is no timeline. I don’t have a deadline I need to meet. I don’t need to relive my entire childhood in the span of a single year. Truthfully, I think taking my time with it will make it that much better. I’ve never worked well when I’m rushed, even if I am the person that ends up getting things done if they need to be done. I guess I just have now realized that this doesn’t need to be done right now. I’m not giving up on it by any means. That’s not what I’m saying at all. I think taking more time with it will make it even better, which is what I want.

That being said, I’m off to spend the evening working on an incredibly important research paper, especially since I’m hoping to have it done by the beginning of next week (even though it’s not due for a few weeks). Wish me luck! Also, happy writing to those of you who are trudging through NaNoWriMo. I’ll be cheering you all on throughout the month!

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.

When in Ireland, don’t let the joy get knocked out of you.

5 Jul

I just got out of my Literature and Film class in which Mary O’Malley, one of Ireland’s leading poets, came to speak. She read some of her work and then asked if there were any aspiring writers in the room. I shyly raised my hand, along with three other people.

She then went around the room and asked each of the aspiring writers what they prefer to write. When she came to me, I said that I’m working on a memoir and memoir-related articles, since that has been my recent focus. Her first question, “How old are you?” is one I get a lot in reference to the fact that I’m writing a memoir. However, when I said “19” she was surprised, but didn’t make any negative remark. She just said, “Good girl,” and all I could do was smile. She then asked what the memoir would be focused on, and I just said my childhood. Her next question caught me off guard. She asked, “When do you think that ended?” (referring to my childhood). I was stunned. I couldn’t answer, much less put together any coherent sentence. She then told me that she didn’t think she knew when her childhood ended either. However, our conversation, though very short, has kicked me out of my writing rut that I’ve been moaning and groaning about for weeks. Her final piece of advice to the aspiring writers was this: “Don’t let the joy get knocked out of you,” and I think that’s what really kicked me into writing gear. It’s something that I sometimes forget: the joy. The pure, simple, and yet strong joy that I get from just writing how I feel. It’s an amazing, amazing feeling. It’s the reason I began writing in the first place….because it was my refuge, my security, the happiness that overpowered the pain.

I think as writers we all need a kick in the pants sometimes, and I got mine today. I’ve opened the Word document of my memoir, and for the first time in weeks, I’m not at a loss for words. They’re there, clear as day, waiting to be written, waiting to come alive on the page as only words can do.

When in Ireland, write through the uncertainty.

2 Jul

I have yet to sit down and write since I’ve been in Ireland (not counting this blog). I really do hate to admit that, even though I do have a pretty solid excuse of: I’m in Ireland. However, over the past few days, that hasn’t really felt like a reasonable excuse, partly because there have been snippets of days that I’ve just sat at my computer wondering what to say.

Attempting to work on my memoir while I’m here feels out of place and very foreign. And yet, at the same time, I hear that voice in the back of my head asking why it seems like such an impossibility. Truthfully, I can’t see why it is. Maybe it’s connected to the fact that I’m doing something huge right now and I want to enjoy every minute of it. Though I have no doubt that that may be part of it, I also know that my strong need to write has increased since coming to Ireland. I don’t know if it’s the beauty, being in a completely different country, or just being surrounded by so many different people. However, either way….I feel it. I feel the wheel’s turning in the way that only a writer’s mind can work, and I’m done ignoring it.

A few years ago, if someone would have told me that I’d be sitting outside of an Ireland university typing a blog post, I probably would have just smiled nervously and pushed it out of my mind. Come to think of it though, not much has changed…except for the fact that I am now in fact here, sitting outside of an Ireland university typing a blog post. The thing is, I’m still scared. I love it. It’s exciting and new and wonderful, but I don’t think I’ve ever been more scared. Not of anything in particular really. Just the uncertainty. The uncertainty of not really knowing what the next few weeks hold, all the while realizing that I’ve just got to grab it by the hand and run like hell with it. I don’t really have much of a choice at this point.

Uncertainty can be truly terrifying. Though I know I’m not to the point of “terrified,” this trip has tested my limits in ways I’ve never been tested before. Though I am with a group of students, I knew no one before coming over here…meaning that no one knew anything about me until they saw me on day one. There’s something wonderful as well as scary about that…having people around me who don’t know my history, my past, what I struggle with. Though I have only mentioned my CP to 2 people so far (my roommate and a guy in my group who asked last night), sometimes I have the urge to scream it from the rooftops while other times I’d rather just sit in silence. It’s hard to not say anything when I’m sure people are wondering why I’m lagging behind the group a bit or why I’m not staying in the same housing as the rest of the students in my group. Yes, a huge part of me is screaming, “It doesn’t matter!!!” but another part of me is wondering, “Would it put me at ease if I didn’t constantly have the worry about my group leaving me behind?”

My program directors know my situation, and they have been sure to include me in everything and make sure I’m an integral part of the group, which is good. However, that doesn’t mean that I don’t sit and worry about the group leaving me behind. Thankfully, it’s not a new worry, though at this point I don’t know if that would be considered good or bad. However, it is something that I’ve had to consider every time I’m put in a situation where a group of students is going somewhere, especially when it’s a kind of walking tour. Oh, walking tours, they are the bane of my existence. Okay, maybe not quite that extreme, but they still suck. So, that being said, the worry is not a new kind of worry, but I guess it’s at a new level, especially considering the fact that I’m in a new country with people who I don’t exactly know exceptionally well.

Realizing that this is something that no one else in my group is struggling with is hard, but it’s not a realization that is new to me. However, sometimes it would be nice if my worry was more “normal,” like worrying about cultural differences or staying in touch with people. Even though those worries have been on my mind, my mind is primarily reeling with the thoughts of trying to enjoy Ireland as much as I can without overexerting myself and trying to step out of my comfort zone to the point of where it gives me a thrill of excitement but not to the point of being utterly terrified.

So yes, the writing…the words…they were there. I guess I just need to sit down and sort through them, even if they don’t exactly flow. But you know, sometimes writers need disorder and chaos and confusion, and above all, uncertainty, to get back on track again…to feel somewhat in control again.