Tag Archives: Sense of Belonging

Stuck between ability and disability.

15 Jul

Though I have Cerebral Palsy, I’m very much of an inbetween. I’m not fully able-bodied, but I’m not severely disabled either. I know what it’s like to feel as if I am holding other people back due to the things I am unable to do. However, I also know the feeling of being held back myself by those who are more severely disabled than myself. It’s not as if I am unable to do everything. It’s just that I may have to adapt the way I do certain things in order to participate in them like everyone else. Because my abilities fall in between the abilities of able-bodied people and the abilities of people with more severe forms of Cerebral Palsy, I’ve never felt completely comfortable in either group.

When I was a freshman at Wofford College, before I made the decision to transfer to UNC Asheville, there was an older disabled man who worked on the staff who had Cerebral Palsy. Though I never asked him if he had CP, I assumed he did because the way he walked was so similar to how I walk. I noticed him on campus. My eyes would catch his gait, and I’d look away, feeling as if I was seeing a reflection of myself. Again and again, I caught myself doing the same thing I hated in others: visibly looking uncomfortable.

One night while having dinner with friends in the cafeteria, the disabled man came over to our table. He looked at me, introduced himself, and commented that he had wanted to speak with me for a while. Though I acknowledged him and said hello, I became incredibly uncomfortable and quickly turned back to the conversation my friends were having. Eventually, the man walked away. Though the situation shouldn’t have freaked me out, it did. I hated that he approached me because of my Cerebral Palsy. I had wanted to fit in with my friends, and his presence made me feel as if I stuck out.

My perceptions have changed a lot since the experience that night at Wofford. Since then, I have started a blog, written about what it’s like to live with Cerebral Palsy, and have become much more open about discussing my experiences related to my physical disability. Though I don’t think fondly on my reaction towards the disabled man at Wofford, at the time, I couldn’t have even fathomed beginning my journey of self-acceptance. I was so far from even starting to feel comfortable in my own skin. Back then, I felt as uncomfortable with myself as I felt every time I saw the disabled man on campus.

Being stuck between fitting in with able-bodied people and those who have more severe forms of CP is continually frustrating. I do not necessarily have what is termed as “mild CP” because my CP noticeably affects my walking and my muscle tone. However, I am able to walk independently without assistance, which is not always the case for those with more severe forms of CP. I have recently joined a Facebook group for people who have CP because it’s becoming more and more difficult to describe the concept of chronic back pain and other frustrations to those who can’t even begin to understand what it’s like living with a physical disability. Therefore, I thought I’d benefit from a “support group.” However, within the group, I am reminded again of how much I don’t fit when I see the posts about power chairs, the frustrations of not being able to drive or not being able to live independently (since I am able to walk, drive, and I’ve lived on my own since I was 16).

On the good days, I’m comfortable with my able-bodied friends. On the bad days, when my back pain is worse than normal and all I want to do is cry, I wish I knew someone who was also stuck between ability and disability who understood my frustrations because at least we could be stuck together. However, this “stuck phase,” aggravating as it may be, is where I am, and there’s not much that can be done to fix that. I can’t make myself more able-bodied (no matter how much I wish that were the case), and I’d never choose to be more disabled than I already am. I’m just me, and even though it’s really hard, I’m trying to learn to be okay with that.

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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

Dedicated to my three favorite fellow bloggers.

25 Dec

After yesterday’s post on all that has happened over the past year regarding beginning my memoir and dealing with the emotional side of digging up all the memories from my past, I know that I have the support from my fellow bloggers to thank. Though I do want each and every one of you to realize how much I appreciate all the support you have given me since I entered the world of WordPress in November of 2011, there are three specific people I’d like to thank.

  1. Arianna of Arianna’s Random Thoughts: Arianna’s blog consists of posts she shares to empower people and help them be the best they can be. In the beginning, I received huge doses of inspiration from her posts, but it wasn’t until I truly started getting to know Arianna herself that I began to truly learn from her. I think the most wonderful thing about the friendship we have formed through blogging is how we have ended up helping each other. Since the very beginning of my blog, Arianna has been a huge supporter of my decision to share my story, and there have been many nights spent talking over Facebook chat about life, the difficulties we face, and what it means to overcome it all. Though Arianna has told me I have helped her to become more vulnerable in her writing, she has helped me in the same way. It means so much to know there is someone who not only supports and reads my writing, but someone who is willing to sit up with me at night (though she lives on the other side of the country) just because I may be having a bad night or may need someone to bounce writing ideas off of. So thank you, Arianna, for being no one but yourself and for helping me find the strength I have had all along. Your friendship means so much to me.
  2. Cassie of Books & Bowel Movements: Cassie’s blog is centered around a topic we both love more than life itself: books. When I first came across Cassie’s blog, I’m pretty sure I laughed for a solid minute and a half as I stared at the title of her blog (Books & Bowel Movements). Now, though sometimes I still giggle when I come across the title of her blog, it’s become normal. Though it still is funny, it’s also just….Cassie. I have loved having the opportunity to connect with Cassie. Often times, I feel like her love of books and my love of books holds a similar weight, and it’s so much fun to come across people who love the concept of reading, books, bookstores, words…and everything bookish…as much as I do. In Cassie’s most recent post, in which she discussed the amazing feat of reading 120 books this year, this is how she describes readers (and this is yet another reason why I love Cassie. Her way with words is truly amazing): “Like oak trees that carry equators of history in one chopped stump, we carry words.  We are the people that will carry history all the way to our grave stones.  When we’re asked by grand children, small children, dwarves in the woods, about our world we’ll be able to tell them with eloquence and grace whether we start with “Once Upon a Time” or “It was a dark and stormy night.”  We carry the voices of generations in our wombs and for longer than nine months, for life times.  We’re women made of hair, water, and syllables.  They kink in our hair, leave freckles on our cheeks, sunburns, hang nails, wrinkles at the bed of our palms.  We’re not made of water, fire, earth, or wind, but stories, paragraphs, sentences, ink.  The next time you wonder why you picked up that book instead of turned on that television, remember the gift that you’re bearing because not a lot of people are given this gift.  We’re the minor few.” Cassie, your words are completely and totally beautiful, and they never cease to amaze me. I truly can’t wait for our book reading party in the future! Thank you for the amazing friendship you have given me. I truly appreciate your support and friendship more than you know.
  3. Mackenzie of whatever, gatsby: When I first came across Mackenzie’s blog where she described herself as a “twenty-one year old floridian prancing about the northeast in knee socks,” I knew we’d be friends. From Mackenzie’s posts where she shares her favorite bits of poetry by Anne Sexton, Sylvia Plath, and Emily Dickinson to her frequent playlists of her current music and her many adventures around the city of Boston, I have begun to realize the critical importance of embracing all that I am, no matter how weird or awkward that true self may be. I owe it to Mackenzie for helping me realize what it means to truly be myself. I don’t know if anyone has ever said the statement, “Weird is beautiful,” but it’s so true and so fitting for life in general these days. I have no doubt that Mackenzie would agree. I also love reading of her many Boston adventures, and since Mackenzie loves to travel as much as (and probably more than) me, I’ve begun to understand that if I want to go somewhere, I should just go while I’ve got the chance. Life is just too short to allow those kinds of opportunities to pass you by. I came across this quote by Anais Nin that seems to sum things up (and Mackenzie, I thought you’d appreciate it): “I am an excitable person who only understands life lyrically, musically, in whom feelings are much stronger as reason. I am so thirsty for the marvelous that only the marvelous has power over me. Anything I can not transform into something marvelous, I let go. Reality doesn’t impress me. I only believe in intoxication, in ecstasy, and when ordinary life shackles me, I escape, one way or another. No more walls.”

In conclusion, I appreciate the three of you so, so much. You have each become wonderful friends to me, and I am so grateful for the laughs, the support, and the love. From your love of books and the printed word in general, I have found the bookish friends I have been searching for all of my life. Little did I know that you each resided in this supporting, loving, and beautiful community of WordPress. Thank you for giving me the sense of belonging I have searched for throughout my entire life. I love each one of you so much, and I am so incredibly happy to call you my friends. 🙂

My heart is in Texas.

3 Nov

I haven’t been to Texas in a few years. However, over the past two weeks, I’ve been missing it more and more. Through loving Texas and North Carolina (which are two very, very different states), I’ve learned that it’s possible to feel like you belong in more places than just one. Yes, I absolutely love North Carolina. The mountains have allowed me to find a true happiness within myself that I didn’t know existed until recently. However, there is something about Texas that acts almost like a force of gravity. I don’t know if it’s the big Texas sky (which seems simple, but is one of the most incredible kinds of natural beauty I’ve found), the connection to my country roots, the amazing Texas bbq (which is so much better than southern bbq, at least in my opinion), the wildflowers in the spring, the amazing music scene or the huge sense of pride than those living in Texas seem to have for their home state. Either way, I absolutely love it, and every time that I’ve visited, it’s been harder and harder to leave.

 

 

 

An I’ll grab the wheel and point it west
Pack the good and leave the rest
I’ll drive until I find the missing piece
You said I wouldn’t get too far on a tank of gas
And an empty heart
But I have everything I’ll ever need
I got this old guitar and a brand new set of strings-Miranda Lambert

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]

Happy (almost) first birthday, lifeintheblueridges!

31 Oct

Even though today isn’t the “official” one-year birthday of lifeintheblueridges, I will be starting NaNoWriMo tomorrow. Therefore, my post tomorrow will be my writing piece for day one of NaNoWriMo rather than a “Yay lifeintheblueridges is one year old today” post. However, I knew that I couldn’t go full tilt into my first NaNoWriMo experience without celebrating the one-year birthday of this blog.

As well as November 1st being the one-year birthday this blog (in which I have written one blog post every day for an entire year), it is also the celebration of the beginning of my journey to find myself. Yes, that may sound cliché, but it’s true. Since I started my blog, I have become a completely different person. When I first began, I had no idea that my words would act as a gateway into what I strive to do in life: advocate for people with disabilities. I first began acting as an advocate in January of this year when I made the decision to share my own story of living with Cerebral Palsy. Though it was a very spur of the moment decision that was made one evening as I sat in bed thinking back on my life in and out of hospitals and how hard it was not having someone who understood my pain and fear, I knew that it was a decision that would stick. I could feel it.

I am proud to say that 10 months later, the decision has remained strong. More than anything, it has grown. Though I know that part of the growth has to do with the inner strength that I have rediscovered within myself, I also know that it has a lot to do with the support and encouragement that I have received from the blogging community. Before beginning my blog a year ago, I never knew that the blogging community was as close to a home with a strong sense of belonging that I’d ever hope to find. Even though I am sure that there will be other places along the way that will allow me to feel a similar sense of belonging, I know it started here. I have no doubt that as I continue to share my story, I will continue to become more confident in myself. However, I also will be sure to not forget those who helped me first begin to recognize my true self: my parents, my friends, my mentors, and all of you lovely blog followers.

It’s always so crazy to think of how much can happen in a year. When I began this blog one year ago, I didn’t know that this is where it would lead. I didn’t know that I would reach a point where it didn’t scare the hell out of me to talk about my life with Cerebral Palsy. I didn’t know I’d be able to talk about certain memories without crying because I could remember the pain so vividly. Honestly, I didn’t think I’d be able to revisit any of the painful memories at all. For so long, they were stored away. I kept them in the dark recesses of my mind, and I never even considered the possibility of bringing them out into the light. The simple thought of reliving the moments in my life that were filled with so much pain and fear was unimaginable. However, I think all of that began to change when I realized that I had the power to help other kids with disabilities feel less alone by sharing my own story. Truthfully, all of it changed because of Grace.

Grace. The twelve-year-old girl who I know who has Cerebral Palsy. The girl who is facing what I’ve faced, and yet always seems to have the biggest smile on her face. The girl who looks up to me as if I have hung the moon and the stars. And yet, she’s also the girl who has the ability to break my heart since, at the time, I knew I’d never be able to save her from the pain. There was nothing I could do that would result in Grace not having to feel the emotional and physical pain that I have had to face my entire life. However, eventually, I thought of a way I could help Grace. Though it may not be in the way that I wished, I know that I can help Grace (and many others like her) by sharing my own story and bringing to light the pain, fear, loneliness and rejection that I have faced throughout my life. Grace. The girl who I feel like I can completely relate to since we know each other’s pain. The girl who often sends me spiraling back into painful memories that have been long gone and over for many years by simply being present in my life. And yet, I long to help her see that she is not alone, that she is strong, and that she is loved. I long to help her see that she is one of the reasons why I’m writing my memoir. Maybe even the sole reason.