Tag Archives: Overcoming Obstacles

Sports Illustrated Kids Brings Awareness To CP.

4 Feb

A few days ago, I watched the inspirational story of brothers Connor and Cayden Long, the winners of the Sports Illustrated Kids 2012 SportsKids of the Year award. However, I have found myself watching it more than once over the last few days simply because it’s that amazing, but be sure to have your Kleenex ready!

The story of Connor and Cayden not only brings awareness to Cerebral Palsy, but it also emphasizes that those with disabilities deserve to be treated like everyone else. Connor, brother to Cayden who has CP, has done something incredible. Through his decision to include his brother in triathlons, he is reshaped the course of his brother’s life, whether he knows it or not. He’s making a point to say that even though his brother has CP, he shouldn’t be viewed as any less than anyone else. Through Connor’s desire to connect with his brother, he is giving Cayden a voice that may not have been heard otherwise. He is helping others become more aware of CP and other disabilities, which is definitely needed in today’s society. Hopefully the more aware people become regarding CP and other disabilities, the less fear there will be toward those who are “different.”

The fact that Connor, who is only 9 years old, was able to make so many important points concerning the acceptance of those with disabilities is incredible. Sadly, there probably aren’t even that many adults that would have the courage or understanding to make such claims. Though I know that some of that fear stems from a lack of education and awareness about those with disabilities, it’s why we need more people like Connor who have a background with people with disabilities (whether it’s a family member or friend) and who are not afraid to get up and say what needs to be said. Though there is still a long way to go regarding society’s acceptance of those with disabilities, allowing the public to become more aware through stories such as this is how it begins.

The story of Connor and Cayden is yet another emphasis on why I have chosen to share my own story of CP. Though it may take quite a while for me to actually get my complete story on paper, I know there are people with disabilities who have some of the same pain, fears, hopes, and dreams as I do, but are unable to express how they are feeling or just want to know they are not alone. That’s why I’ve kept on writing. These stories need to be brought to light, both for those who have lived through the experiences as well as for those who are striving to understand just what someone they know with a disability is feeling.

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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

Almost a year ago…before the writing began.

24 Dec

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

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

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

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

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

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

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 Shrine Bowl of 2003.

25 Nov

Ten years ago, as I was riding back from one of my weekly physical therapy sessions with my mom, I received a phone call informing me I had been nominated to be the Shrine Bowl Queen. At the time, I wasn’t sure what being a Shrine Bowl Queen meant, and I didn’t know there was a football game that took place every year in the Carolinas hosted by the Shriners.

As months went by following that first phone call, I received more phone calls informing me I was a finalist and finally that I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. I didn’t know what to think. I was excited, obviously. However, I was confused as to how I’d been chosen. Apparently, as I later learned, I had been one of the few girls who had been chosen out of the thousands of patients who had been in and out of Shriner’s Hospital for Kids in Greenville, SC, over the past year. Though sometimes it still blows my mind that I was picked out of all the others girls that year, I’m proud. I was chosen because I had stood out. However, for once, I didn’t stand out because of my disability (since the majority of the kids at Shriner’s were disabled too). I stood out because someone saw me as one of the patients at Shriner’s who had faced a lot, but was still able to have a smile on her face and a lively laugh despite the pain.

Being named “the Shrine Bowl Queen” involved attending two required events. The first event was a parade that took place in Myrtle Beach, SC, in which I rode on a float (along with the Shrine Bowl King) to support the Shriners and the Shrine Bowl game that would take place in the Spring. The second event was the Shrine Bowl itself. Though I don’t remember the outcome of the football game, I remember being so incredibly nervous, but also extremely excited. As time passed during the first quarter, I knew the chance to make my appearance was getting closer and closer. Part of being the Shrine Bowl Queen (or King) involves going onto the football field during halftime of the Shrine Bowl to release a dove into the air. During this time, both the king and the queen each receive a trophy with their name engraved as well as a football that is signed by all the Shrine Bowl players of that year. Though I was excited about having the opportunity to walk out onto the field with the Shriners to release a dove, the thought of being in front of so many people gave me huge knots in my stomach. However, despite the nervousness, I knew that I would walk out onto that field. After all, I had been chosen as the Shrine Bowl Queen for the Shrine Bowl of 2003. With all references of having a disability aside, that isn’t an opportunity that you simply walk away from.

I guess you could say that the Shrine Bowl of 2003 was one of the highlights of my time at Shriner’s Hospital for Kids. Though there were definitely some other exciting times that were connected with getting closer and closer to independence, the majority of those memories were layered with months of physical pain. However, the Shrine Bowl of 2003 didn’t include any kind of pain: physical or emotional. It just served as a day which now signifies that I was a patient at Shriner’s Hospital for Children, and I was a prime example of a girl who endured. Though there are definitely numerous moments now in which I’m able to look back on all that I have overcome, being chosen to be the Shrine Bowl Queen of 2003 was evidence that I wasn’t the only one who was able to recognize all that I had endured. Doctors, physical therapists, nurses, and others at Shriner’s who were responsible with making the Shrine Bowl Queen nominations knew it as well. They probably knew it long before I even saw myself as someone who could smile and laugh despite the continued presence of pain in my life.

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]