Tag Archives: Intense Surgeries

The Disability Fight: It Never Ends, Does It?

23 Jan

I am still incredibly self-conscious in regards to the physical aspects of my disability. Though I may have reached a point where I am able to talk about my disability with more ease than ever before, I still haven’t developed a sense of confidence when it comes to the physical differences related to my Cerebral Palsy. I shrink away from the differences, silently wishing they were a part of someone else and not me.

When I see the severe curvature of my lower back in a mirror, I cringe. In the summer, when I give in and put on a bathing suit because of the heat, I hate to look down and see the scars on my legs from my intense surgeries. In just one moment, I am transported back to my intense surgeries, all the physical therapy I endured following those surgeries and the nights I’d wake up screaming and in tears because of the pain that seemed to come from everywhere all at ounce. When I am about to walk inside of a building and I see the reflection of myself in a door, I look away. I don’t have to look at my own reflection to know the way I’m swaying side to side as I walk with a visible stiffness in my legs. I don’t have to look at my reflection to know the way my knees still knock inward and the way I’m up on my tiptoes despite the operations I had to straighten my femurs and try to decrease the spasticity in my legs. I can formulate a picture in my head of myself walking that’s so accurate I want to scream. I’d give anything to not know every single detail of how the way I walk is different from how the average person walks. A part of me hates myself for my self-consciousness in regards to my walking. I spent my entire childhood going through intense surgeries and 15 years of physical therapy to reach a point where I could walk on my own without assistance and be as independent as possible. It’s not that I am not proud I can walk. I am. I know I should be jumping up and down on a daily basis because I am able to walk. But I don’t. I just can’t make myself do it.

If you were to ask me whether I’d choose to have CP over not having it, I’d say I’d rather have it because it’s made me into a much stronger person. But if you were to ask me if there’s anything I’d change about myself, I’d tell you that all I want is to look like everyone else. I don’t want to always be the target of stares from toddlers, and even adults, in grocery stores. I want to be able to stop having to cringe at the severe curvature of my lower back or look away from my scars and the pain I remember and still feel. I want to stop having to look away from my reflection because my knees are knocking together and I’m up on my tiptoes. In a way, that’s what all of the physical therapy and surgeries were for. It was to get me as independent as possible, or as close to being like everyone else as I could get. But even with all that work, I’m so far from being where I wish I could be. My balance sucks. I can’t go up or down stairs without a railing. I can’t put on a pair of pants without needing to be in a seated position. And on the days when I think of the things I can’t do and I’ve fallen more than what is normally expected of me during the course of a day, I cry. I cry because it is so, so hard to keep fighting this. No, I am not faced with a life-threatening health problem, so I’m not fighting for my life necessarily. But I’m still fighting just as hard. And it takes every ounce of strength in my body to wake up every morning and make the choice to face it all…again and again, even though all I really want to do sometimes is pull the covers over my head and hide.

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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.

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.

NaNoWriMo (Day 1): Different kinds of love.

1 Nov

My parents are very different people. I guess you could call them polar opposites in a lot of ways. However, they compliment each other, and I also know that without them being very different, I would have had an even harder time dealing with the struggles related to my Cerebral Palsy throughout my childhood. In connection with my parents being very different, they also have very different ways in which they show love. I like to think that I got lucky and am able to show others how I feel through how each of my parents behaved (and still do behave) towards me regarding love.

My mom has always showed affection through tough love. During my childhood years, I couldn’t understand that this was even a form of love. The toughness hurt. It made me cry. Most days, it made me feel like I wasn’t good enough. Especially concerning the exercises that I had to do in order to get stronger and be more independent, my mom was the pusher. The goal was to get me to be more independent, and in my mind, I felt like that is all she could really see. For much of my life, I didn’t want a tough love mom. I wanted a mom who would show me she loved me in the obvious ways. I wanted a mom who would see me in pain and instantly hug me and rock me, continually telling me that it would all be okay. I wanted a mom who would welcome me into her arms, welcome me into the place that I fit and would always belong. I didn’t understand how my mom could push me to complete all the really painful exercises and not even be phased when the tears began to fall. I didn’t understand why she didn’t tell me she loved me more often. For much of my life, I doubted my mom’s love for me. Since we were often butting heads, I couldn’t allow myself to see the ways in which my mom was showing me love. I just knew that I was in pain, and instead of making it stop, she was making it worse. In my mind, that was so far from love. Though my mom was pushing me so that I could be a more independent person and fight through what was bringing me down, I couldn’t see that. All I knew was that what I did end up doing never seemed to be good enough. As soon as I completed one exercise, using all my strength to push through the really painful parts, there was another exercise to do…and another after that…and another after that. It was a never-ending stream of pain and tears, and at the center was my mom, telling me to bend my knee up just one more time.

My dad was the complete opposite. He has always been incredibly sympathetic and has always showed his love for me in ways that I could relate to. For instance, I remember the first few weeks I was home after my first surgery. Throughout those weeks, I was in an incredible amount of pain, which often made it really difficult for me to sleep at night. Therefore, I’d call out for my dad, and even though it would take some time for him to hear me, eventually he’d come to my room. In those moments, there was nothing he could do to ease my pain except give me some pain medication. However, the ability for him to just sit at my bedside and brush my hair with his fingers was enough. Though I was still hurting, it was obvious that all he wanted to do was take away my pain. I could tell from how he looked at me that it was so hard for him to not be able to do anything. However, in those moments, his love for me was obvious. The simple fact that he just came to sit beside my bed through my tears said so much. Even if he never said anything to me, I could feel the love that was held in those moments.

My dad has always been an incredibly empathetic person, and I know that’s where I get my ability to empathize with others and relate to the pain that other people have felt, though I may have not felt that specific kind of pain myself. Though my dad has always been empathetic, that doesn’t take away the fact that for my entire life, I have longed to have someone to understand my pain. I’ve wanted someone to be able to come up to me and say, “I know exactly how you feel.” However, in a situation such as mine, that’s not an easy thing to find. My dad’s love for me has filled many of the gaps that a person who knew my pain normally would. Though he doesn’t know what my pain has felt like it, he (as well as my mom) lived through it with me. They were with me every day, watching as I went through unimaginable pain that they couldn’t take away no matter how much they longed to do just that. Also, since I’ve always been incredibly close with my dad, he’s grown to understand many of the parts of myself that I don’t show to many people. Since we’re so similar, he probably knows me better than anyone else. In so many different ways, we understand each other, and my ability to be incredibly open and honest with my dad has allowed us to have the kind of parent-child relationship that I know many people wish they could have.

In much of my teenage years, during the times that I was going through intense physical therapy but also beginning to become my own person, I began to doubt my parents’ love for me. Though I have no doubt that my parents had told me they loved me countless times before, I feel like my own low self-esteem impacts the way I imagine others feel towards me. Though that may seem sad, I think it’s something that any of us who are different struggle with. In a childhood that is filled with a great deal of emotional and physical pain, where is the love? How can we feel like others love us if they are pushing us to do things that are incredibly physically painful? Isn’t love supposed to be a warm feeling? Isn’t it supposed to be the kind of emotion that has no boundaries or limits and is able to lift us out of the hardest times in our lives? Doesn’t love conquer all? Regarding my ability to doubt that others love me, I have realized that I have always been one of those people who needs reassurance, which I feel like is another trait I get from my dad. Therefore, even though I have friends and family who may tell me they love me on a regular basis, I often wonder when I will allow myself to believe them. I wonder how long it will take to stop doubting how much they care. I wonder…I wonder…I wonder.

Though my parents showed their love to me in very different ways, they’ve always complimented each other. If I had 2 parents who demonstrated tough love or 2 parents who were incredibly soft, caring and empathetic, I wouldn’t have been able to make it through my struggles. Though sometimes it’s still hard that my parents show love in 2 very different ways, it’s helped me define my own definition of love. It’s also helped me understand that since my parents have two very different personalities, the way they show affection is definition, and that’s just the way it is. However, it’s helped me see that there isn’t just one way to show someone who you care about them or love them. Though I am only 20 and I still have a lot to learn regarding love, I know that the love I have received from my parents has shaped me into how I show my love to other people. Though I don’t solely demonstrate tough love or solely demonstrate softness and empathy, I know that having a mix of the two is probably the best way to be.

[Word count: 1380 of 50,000]

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.