Tag Archives: Intense Physical Therapy

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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Janine Shepherd TED Talk: A broken body isn’t a broken person.

6 Dec

Janine Shepherd TED Talk: A broken body isn’t a broken person

Despite this TED Talk by Janine Shepherd being her story of recovery after getting hit by a truck during a training bike ride for the Olympics, it is also an incredibly inspirational story about the power of the human spirit.

Even though my Cerebral Palsy wasn’t something that “happened” to me and rather something I was born with, I can relate to so many of Janine’s feelings that she expresses during her journey of recovery. Despite Janine’s accident, she eventually finds something that allows her to find a new, if not better, dream. In many ways, I can relate to the idea of having a situation allow you to discover something you never thought possible before. No, my Cerebral Palsy is not an “accident,” but through the slow process of learning to accept it (as well as all the emotions that go along with it), I have discovered that I want to help others realize that they too can have dreams despite their disabilities.

Writing is and has always been my dream. Though there was a period of time that I took a step away from it, I came back…as all true writers do. I took a break from it because I realized I was beginning to feel as if I was writing for others instead of myself, which was taking the joy and love out of what I was doing. However, I’ve come back to it…in a much different way, but with so much more gusto. During the years of my surgeries and intense physical therapy, I did write about what I was facing. I came across the original copies of those stories last year when my parents were getting ready to move from my childhood home. As I sat on the bedroom floor of my childhood home, I was transported back into the mind of an 11-year-old girl who was feeling so many different versions of pain, and yet was still able to describe what she was feeling and seeing with uncanny accuracy.

Even though the early stories that I wrote regarding my surgeries lacked the level of understanding that I have uncovered over the last year, they have provided me with a way to remember the details. I often forgot how much we are able to take in during our younger years, and through reading my own life experiences through the eyes of my 11-year-old self, certain details came back to me: details that will do nothing but increase the level of authenticity within my memoir. Yes, the raw truth with which I wrote when I was going through my intense surgeries was hard to take in all in one sitting. However, it was necessary. Reliving it all is honestly what the process of writing my memoir and sharing my story is all about.

Maybe I will share one of those stories with all of you one day. But for now, they are for me. They have provided me with the perspective of my younger self, and there’s something truly special about having that ability. Incorporating the perspective of my younger self with the understanding I have now is just going to make the journey of sharing my story with the world even more powerful.

The search for understanding from a disability perspective.

5 Dec

Since I didn’t have someone who understood my pain during my years of intense surgeries and physical therapy for my Cerebral Palsy, I talk a lot now about wanting to be that person for others with CP (or other disabilities) who are going through similar situations. Though I do know that I want to be the understanding ear for those with physical and/or emotional difficulties associated with their disability, it’s only recently that I’ve begun to realize that there still isn’t someone to fill that role within my own life.

Though it is reassuring to know there are so many others who are in similar situations, most of the people I have connected with (mainly through my blog) are in the phases of difficulty I was in many years ago: the intense physical therapy, the surgeries, the nights of crying because all you want to understand is why you have to be different from everyone else. In order to be the CP advocate that I wish to be for others, I’m still looking for an understanding ear, but specifically someone who has already faced the difficulties I’m currently dealing with. However, I’m beginning to realize that finding someone who understands isn’t just hard when you’re a kid. It’s hard at every phase of life, no matter how much you may have progressed from where you were on day 1.

However, it’s also important to make a distinction between someone who wants to understand and someone who can understand. My support group of friends are all people within my life who love me and want to understand the pain and difficulties I have faced and continue to face on a daily basis. However, despite their good intentions regarding every aspect of who I am, none of them fit into the category of being someone who can understand. Though I do not blame them and am still very appreciative of all they do for me, I still want someone who can understand. I want someone who knows exactly what I mean when I’m talking about the pain of post-op physical therapy or how hard it is to simply summon the strength to get out of bed in the morning to continue the daily battle that is associated with living with a physical disability.

Though it may take me a very long time to find someone who can act as a disability role model within my own life, I know the wait will not stop me from being that person for so many others. The recent realization that sharing my own story can help to inspire so many others to keep on going is incredibly special to me. I have seen from my blog posts how much I have helped others who also have CP (and even people who don’t have any kind of disability) to simply keep on going. In so many ways, that is all we can do. Though there many not be too many people who can understand, I will continue to share my story in order to help those who want to understand. It is through those who want to understand that change will come. Since the central part of the search for understanding lies in the need for acceptance, helping those who want to understand is the first step towards achieving some form of acceptance within the current society in which we live.

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.

Hospitals: Where Time Stops And Yet The Weeks Run Together.

8 Aug

Anyone who has ever had a very intense surgery will tell you that the actual surgery is the easy part. It’s the intense physical therapy sessions that you have twice a day that bring all of the pain, a pain unlike anything you’ve ever known before.

The physical therapy room of Shriner’s Hospital is a room that is very detailed in my mind. First of all, there are 2 doors on either side of a window that lead into the therapy room. If you enter through the door on your right, you’ll see the physical therapists’ desks to your left, a few raised mats to your right, a small set of stairs straight ahead, and a set of parallel bars to the left of the stairs. Past the stairs and the parallel bars and the mats, there’s a relatively big window. Beyond the window is a patio area that has a few benches and some trees, a scene that was probably designed to look relaxing and bring in as much sunshine as possible. A scene that all of the PT patients look at with longing when they are able to catch a glimpse, wishing for just one moment that they could be on the other side of that window.

I went out onto that patio area once from what I can remember. I remember smiling because it was the first time in months that I was able to feel the sunshine on my face. Hospitals give the impression of being cold, dreary, and plain. Shriner’s wasn’t like that. It was colorful, had a game area for kids to play, and had tons of windows that gave you a glimpse into what was happening outside. However, they were still windows. They still acted as a barrier between two very different worlds. Even though Shriner’s didn’t give off the typical hospital impression of being gloomy and full of sick people, it’s true that you lose track of the days when you’re in a hospital. However, in my case, I seemed to lose track of the seasons more than the days. If it wasn’t for the big windows, I would never know when the leaves began to change in the fall or when the flowers began to bloom in the spring. I’d never know that the world was continuing on without me…while I was inside a physical therapy room wanting nothing more than to catch a fallen autumn leaf in my hand or feel the rain on my face.

All the time that I spent in Shriner’s after my surgeries to have intense physical therapy is pretty much a blur. Though I remember specific memories, the time frame I was there is skewed. I can’t remember how long I had intense PT after my first surgery. I can’t remember when I was finally able to go home after that chunk of therapy. But I can remember who my therapist was. I can remember which exercises I hated the most, and I can remember the moments when the only time that I could breathe a sigh of relief was in between the spasms in my legs, the spasms that made it seem as if my legs resembled a rubber band that was being pulled right up until the moment that it almost popped. Though I may not remember days, months, or what time of year it was, I remember specific moments of pain. I remember realizing that there’s only so much emotion that can be held in tears, and there’s only so many times you can scream before the pain is so extreme that it silences everything, even your voice.

To Grace (Part 3): Accepting Love.

10 Jul

To Grace. To Grace (Part 2): Walking Through The Fire.

Dear Grace,

I don’t know what it is about writing these letters to you that makes me feel better, but they do. Even though I know that you aren’t in the same place as me in terms of your CP, simply being able to say that I personally know another girl with CP who has faced what I have makes me feel that much closer to you.

I’m in Ireland right now, and I love it. It’s been such a wonderful experience. However, it’s been so hard too. Physically and emotionally. I’ve walked more since I’ve been in Ireland than I have in a long time. Though I know that it’s making me stronger, it hurts. It hurts physically and emotionally because there’s no one here that understands. There’s no one that can say they know what I’m feeling. I know that I said in my previous letters how hard it’s been on me that no one can understand what I’ve faced, but it’s just so so so hard, Grace. I know that you know this.

Having no one who understands is almost as if I’m walking down this dark corridor with all these different doors. The doors lead to people who want to understand, but can’t. The need to go through each door and cry is so strong. The only thing worse than not having anyone who understands is knowing that there are people in my life who want to understand but aren’t able to. I can see it in their eyes. There isn’t pity there. There is just the desire to want to know me on a different level, and the degree that I want people in my life to be on the same level as me is stronger than I ever imagined. It’s close to impossible though, Grace.

I know that you understand. However, I also know that it’s not something I’d easily be able to discuss with you. I’d like to imagine that one day when we are older we could try to talk about it. Right now though, it’s too fresh for both of us. It’s too true, too real, too close for comfort. You’re closer to it now than I am. You’re still having to go to PT and face the pain that I’ve been reliving over the past few months through attempting to write my memoir. Even though I’m not facing that pain in the same way that you are right now, I’m facing it in my own way. Saying it’s emotionally painful doesn’t even come close to what I have felt over the past few months. Recently, I really have wondered why I keep putting myself in this position. When you think about it, it’s as if I’m bulldozing myself with all these really painful memories that I never wanted to think about again.

Over the past few months I’ve had multiple people ask me why I have openly placed myself so far deep into my past that I feel completely and utterly stuck. I don’t know how to answer that question because I myself don’t know why. At first, I stuck to the reason that it was because I wanted to reach a point where I could accept myself. However, now that I think about it, self-acceptance is something that every single person struggles with. I don’t think I’ve ever come across anyone who can openly say that they completely and totally love themselves. It’s not an easy thing to do. It’s hard to block out all the negative feelings you have about yourself, even if you do feel like it would benefit you if you didn’t dwell on them.

So as of right now, I’m walking down that dark corridor…feeling alone and yet realizing that there are people who reside behind the doors who are ready and willing to take me into their arms and simply hold me. Because sometimes, no matter how many times we try to be strong, the only thing left to do is sit down and just let the tears come. I used to hate giving in to the tears. It used to make me feel weak. But Grace, we’ve faced so much. We’ve been through pain that people can’t understand. So I guess the thought of walking down a dark corridor and feeling completely and utterly alone isn’t as depressing as I’ve made it seem. It’s just accurate, especially when we realize that the people that we care about aren’t as far away as we imagined. They’re close…patiently waiting…waiting to try to feel what we’ve felt….even though that feels close to impossible right now. It shows love, Grace. It shows a strong emotion that I’ve been so nervous to let in. Nervous because of the strength and power of love. But also nervous because I feel like I’ve been walking through my life recently not knowing how to accept love from people who want to give it to me. I just don’t know how. I’m trying though. I’m trying so hard.

I’m thinking of you. Please know that.

Love,

Amelia