Tag Archives: Independence

Finding Determination Through Fear.

19 Oct

A few days ago I was talking with a friend of mine, and he asked me to explain my absolute worst fear in life. Though some classic answers popped into my head, like ending up alone and losing the people I love, I knew my absolute worst fear. I tried to say it, but couldn’t. I felt like I was about to cry. However, after a period of silence stretched over us like a blanket, I finally spoke.

“I’m afraid of the day when I’ll no longer be able to walk.”

I spent my entire childhood learning to walk so I could be as independent as possible, despite my Cerebral Palsy. Before my intense operations, I learned to walk in my own way, my knees knocking together as I put one foot in front of the other. During the years I spent on a t-ball team, I loved the feeling of running to first base. Even though I typically got out before making it to first base, I ran with all my heart just like everyone else on my team. I ran in my own way, but it never stopped me from trying.

After my first operation at the age of 10, I had to completely relearn to walk after having my femurs straightened out and kept in place with rods. One year later, when I got the hardware removed that was placed during my first operation, I had to relearn to walk yet again. See, not walking was never even an option for me. I wanted to be like the other kids my age, and to do that, I had to be able to walk. I had to be as normal as I possibly could. Even when I was faced with physical pain that made me want to curl into myself and give up all together, I kept going. Every day, I literally walked towards my own independence, one step at a time.

Because I spent so much of my life struggling, and ultimately succeeding, to walk, the thought of reaching the day when I’ll no longer be able to walk is completely terrifying. In so many ways, when I reach that day, it will feel like a kind of giving up. Though I plan to walk for as many more years as I can, I am scared of the day when the pain will just be too much, when walking will be putting too much strain on my body. It’s especially frightening because I know how much physical pain I’m in on a daily basis currently. The realization that I am in so much physical pain and I’m only 21 is terrifying. Trying to imagine my level of pain when I reach age 30 is nearly impossible.

That is one great thing about fear though. It has the ability to help us find the determination and strength we didn’t know we had. Yes, my worst fear is seeing the day when I will no longer be able to walk. However, I’m not there yet. I am a long way off from that day. Today, I am able to walk and do the things I love, despite being in pain. Today, I am able to push through the pain, because the result…the view at the top of the mountain…is worth it. The happiness, joy, and pure bliss of the destination weighs so much more than the pain of the journey.

The fear lingers in the back of my mind, the fear of knowing one day I won’t be able to get to the top of Max Patch, my absolute favorite place in the world. However, the fear also gives me the strength and determination I need to continue doing what I love. Yes, one day I may not be able to walk because of the amount of pain I am in. But I’m not there yet. I’ve still got plenty of fight within me.

At the top of Max Patch (October 2013)

At the top of Max Patch (October 2013)

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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.

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

To all my mentors, past and present.

9 Dec

After reading Arianna’s post on role models, I was inspired to write my own post regarding the numerous mentors I have had throughout my life thus far. Despite the fact that the mentors who are in my life right now are currently the most important to me, I know the mentors of my past also helped me during times in my life when I needed guidance.

Though I do not doubt that my strength and my drive for independence were two very important factors that got me where I am today, I know without a shadow of a doubt that the many mentors I’ve had throughout my life provided me with a level of support that not only acted as a cushion when I was feeling low, but also propelled me forward and taught me to reach for all the possibilities that were awaiting me. Even though I am naturally one of those people who makes sure to tell the people I care about how much they mean to me on a regular basis, I also believe that you can never say “I appreciate you” too many times. It’s a simple three word phrase, but it has the ability to hold an amount of emotion I can’t even begin to describe.

“In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.” – Elizabeth Gilbert

There is something really special about taking note of the people in your life who have shaped you. Though I definitely know that my parents fall into that category, I’m referring to those people who shaped me without being asked. Those people who, though it was never asked of them, established connections with me because they hoped to influence my life in a positive way. Even though the concept itself seems like a no-brainer, I know that I wouldn’t be who I am today with the mentors from my past and present. Each one of them has provided me with support, encouragement, love, advice, and best of all…their time. I don’t know what it is about establishing connections with people who want nothing more than to learn from you, while also hoping to positively influence you…but it has brought me more happiness than I can even begin to describe.

In simple terms, I thrive off of connections with other people. In some situations, those connections don’t lead to a positive result, but in the best circumstances, I have gained not only a friend, but someone who I am able to appreciate and learn from. I believe that my need and love of having general connections with others is very much related to my desire to work in the helping profession as a counselor. Since I have had mentors within my own life who have impacted me in ways I never could have imagined, I want the chance to impact others in the same way. I want to know that in some small way, I helped someone. Whether it’s helping them to realize that they are worthy of the love that others are showing them or helping them to see that the traumatic event from their childhood doesn’t define the person they are today, I want to be there through it all. I want the chance to help them discover who they truly are, even if that means uncovering things about themselves they’ve kept hidden for so long for fear of being ridiculed.

Therefore, to all my mentors, past and present (Mike, Tucky, Chuck, Dr. Cox, Mr. Richard, Miss Mary, Miss Marie, Mrs. Trish, Dr. Cahill and Mrs. Walker)…I appreciate each and every one of you. You each have helped me to realize something different, but equally important, about myself, which has helped me to continue to discover who I truly am. You’ve each supported me when I’ve been down, and have continued to support me through my successes. You’ve shown me what it means to be selfless because I know that none of you felt obligated to be a positive influence my life. You chose to fill that role on your own accord, which means more to me than you will ever know. In all actuality, there are not enough words in the English language to express how much I appreciate each and every one of you. If it means saying “I appreciate you” every day for as long as I live, then that’s exactly what I will do.

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 books that saved me.

2 Oct

Due to Cassie’s most recent post, Dear Fear and Judgement:, I’ve been inspired to discuss the books that have changed my life. I’ve been reading for as long as I have had the ability to hold a book in one hand and a flashlight in the other. After all, all of us who love books know that even when darkness falls, we don’t necessarily put down the books that have grabbed us so strongly out of our reality. Sometimes the arrival of darkness forces us to grab a flashlight, get under the covers and escape into a world that seems just as real as the world in which we are living.

Pippi Longstocking is one of the first books I remember reading from cover to cover countless times. I don’t know if it was the independence Pippi portrayed due to being a nine year-old girl who lived without the constraints of adults or her red hair that she always wore in pigtails that caused me to be so drawn to her. Either way, I remember a particular summer in which Pippi went everywhere that I did. Even when I went on a week-long trip to Edisto beach with my family, Pippi came along for the trip. Though I didn’t take the book with me everywhere, it sat patiently on my nightstand every day, waiting for night to come so that the pages could be turned once more, causing Pippi’s world and my own to collide through something as simple as words.

 

Even though Halfway to the Sky was introduced to me much later than Pippi Longstocking, it was yet another book that became very well-worn in a relatively quick amount of time. Halfway to the Sky tells the story of Dani, a 13-year-old girl who runs away from home in order to escape the recent death of her brother and the break-up of her parents’ marriage. However, Dani doesn’t run just anywhere. She runs to a place that she believes her parents will never find her to do something amazing: hike the entire Appalachian Trail. Even now, I know why I loved this book so much. It involved hiking, which I did a lot of with my family growing up, and it involved the Blue Ridge Mountains, which is a place that I haven’t been able to fully appreciate until coming to live in Asheville last fall. However, Halfway to the Sky created the strong connection I’ve had to the mountains for so long. Even though I have been coming to the mountains ever since I was little, I definitely think that Halfway to the Sky is one of the main reasons that I have felt the desire to fully experience the mountains. There are days that I find myself driving on the Blue Ridge Parkway looking at the overlooks or hiking up to Max Patch Summit, which is an hour above Asheville, just to simply feel the mountain air in my lungs, and ultimately, feel alive.

 

It may seem strange that I’ve included The Bell Jar in the books that have saved me due to the fact that it is a very dark and depressing novel. However, I believe that it saved me in the sense of helping me realize that we all have our own inner struggles that we are battling, and therefore we shouldn’t be quick to judge others because we don’t know what they have to face on a daily basis. Also, since The Bell Jar is essentially the autobiography of Sylvia Plath’s plunge into madness, I think this book may have been one of the first examples of my desire to be a counselor. Even though I may not have realized how much I wanted to be a counselor during the time that I was reading The Bell Jar, I know that if I were to read it again now, it would most likely affect me in a completely different way due to my new-found passion for psychology and counseling.

 

John Green’s newest book, The Fault In Our Stars, came out in January of this year, so it is probably the most recent book that has deeply affected me. It is the story of Hazel, a 16 year-old cancer patient, who is forced to attend a support group where she meets and falls in love with 17 year-old Augustus Waters. Even though it would be easiest to say that this book saved me because the writing is simply amazing, that only scratches the surface of how this book has impacted my life. Through reading The Fault In Our Stars, I have learned what it means to love. However, more than that, I have begun to realize that a huge part of allowing yourself to be loved by someone else is by placing yourself in a vulnerable position. The concept of vulnerability has scared me my entire life because in my mind, it places you in a prime position to be emotionally hurt. However, over the past few months, I’ve realized that the road to love involves being vulnerable. It’s scary, but it’s the only way to truly let someone love you fully. The concept of vulnerability also applies to writing as well because the truest and most raw pieces of writing are those in which the writer is completely 100% vulnerable.

Even though these books may not have necessarily saved me, they each have helped me realize something new about myself that has helped me get closer to who I truly am. For as long as I can remember, books have been the one place where I can go to escape. However, I never realized that they’d end up helping me find myself. Yes, I’m the girl who reads all the time, the girl who always has a book with her no matter where she is, the girl who would rather curl up in bed with a book instead of going to a party. Words have taught me about love, strength, hope, pain, and adversity. However, they have also been the way that I have expressed all of those emotions as well, giving me a way to be as authentic as possible. They are something so simple. And yet, for me, words have always been enough.

 

Spring Fever And Salem.

21 Mar

Spring has made an appearance here in the Blue Ridges, and I’ve been itching to get out and get some new spring photography done. Due to lots of schoolwork, that hasn’t been possible. However, yesterday two of my friends from high school came to stay with me until tomorrow. They are both seniors in high school, and one of them is most likely coming to UNCA next year, so she’s here to get to know the campus and sit in on classes.

Though I won’t be done with classes today until 4, I’m hoping that the weather will be nice enough for us to get out and take some spring photos. I’d love to be able to get out on the Blue Ridge Parkway for some spring shots, but I’ll see how tired I am once classes are done. Either way, it’s nice to have a bit of Salem here, even if only for a few days.

See, I loved my high school experience (or at least the last two years of it). I went to an all girls boarding school for my junior and senior years of high school, and it was a huge high point in my life. I grew a lot as a person, I made some amazing friends, and I made incredible memories that I still look back on and smile about. Having Olive and Carrie here have brought Salem here, and it’s as familiar as a warm blanket. I’m reminded of the fun times I had while at Salem, and I remember just how strong the bonds of sisterhood truly are. Even though I don’t keep up with too many of my Salem friends, I will always have a place in my heart for the Salem sisters who helped me grow into who I am and those who lifted me up when so many others insisted on keeping me down.

I’m reminded of cookie break, all the Salem traditions (ring banquet, senior vespers, Athletic picnic, etc), and the realization that Salem will always hold a special place in my heart. During Springtime, I think of Salem often. I think of all the pretty blossoms in the trees on campus, of the times that my advising group enjoyed lunch out on the front lawn, walking down to the Fine Arts Center for Glee Club and singing the whole way there, the yummy Moravian sugar cake in Old Salem, and the people I’ll never forget. My friends that are here said that they are ready to be out of Salem, and while I understand the want to graduate and be at college already, I have realized that I long to be back at Salem more than I longed to be there while I was still there. I long for the memories to come rushing back, to fill me up completely and remind me of the time in my life when I began to get more comfortable in my own skin.