Tag Archives: Living With Cerebral Palsy

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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A conversation with my younger self: Part 2.

1 Jul

Eight months ago, I wrote a blog post titled “A conversation with my younger self.” In this blog post, I talked with my 7-year-old self and tried to tell her the things I imagined she needed to hear at the time. Things like, “You are not alone,” “The pain won’t last forever,” and “I love you.” More recently, I’ve come to the understanding that I need to become closer with my younger self. I need to sit down and talk with her again to find out what she needs. By doing this, I might be able to figure out what it is I need right now. That younger self is a part of me (though she may currently feel very far away), and I think she might need me as much as I need her right now.

I’m standing in front of a hospital room door in a place that is all too familiar: Shriner’s Hospital for Children in Greenville, SC. I spent enough time here as a kid, and the familiar sights and sounds are a tad too close for comfort. However, the distant hum of the air hockey table in the lobby brings a small smile to my face as I remember how, on the good days, I played as many games of air hockey as I could before becoming too tired.

Nurses walk past me bringing various things to other children on this hall. I look at the door I am in front of, knowing I am meant to go inside. I place my ear against the door to try to hear any kind of conversation, but all I hear is crying. I take a deep breath to try to calm my nerves. My younger self is inside that room, and she needs me. Before I can talk myself out of it, I turn the knob and walk in.

Upon entering the room, it appears that all the lights are off. It’s not until I make my way to the far left corner of the room that I see a fiber-optic Christmas tree radiating different splashes of color onto the wall behind it. My younger self is curled up onto her side and watching the colors change. She holds her stuffed hippo tightly against her chest, her arms constricting and relaxing around him as she cries.

“Hey Amelia,” I whisper as I stand at the end of her hospital bed, hoping I don’t startle her.

She looks up, blinking a few times before making the connection, and then turns back towards the red and green lights.

“You told me before that it would be okay,” she says.

I look down at my feet, remembering the first conversation we had in the park when she was 7. I didn’t know how to discuss it then, and even now when she’s 12, I continue to find myself at a loss. How is it possible to discuss a pain so raw and true while at the same time trying to be comforting and reassuring?

“I’m sorry. I didn’t want to scare you,” I tell her.

She glances quickly towards me, and before she turns away, I notice the tears in her eyes. I sigh, knowing her pain so well. I walk around to the side of her bed, pulling up a chair so that I can sit beside her.

“The nightmares are almost as bad as the actual pain, and then the spasms wake me up, and it’s like I’m living the nightmare,” she says.

“I know it’s scary, and I know it hurts. But it’s okay to cry. I’m right here.”

Without thinking, I place my hand on her head, carefully brushing back her curly brown hair so that I can see her face, her blue eyes. As I look into the eyes of my 12-year-old self, I see it all: the pain, the loneliness, the fear…and for a few seconds, I feel every piece of it all over again, even the spasms that seemed to come out of nowhere. I touch my own scars as I remember, and it isn’t until I feel the pressure of her hand wrapping around my wrist that I look up. She’s staring right at me, and her hand is wrapped around my wrist so tightly that I can tell she’s trying to picture the long road ahead of her.

As her eyes move back towards the changing lights on the fiber-optic Christmas tree, I crawl into her hospital bed, allowing her body to curl up against my own. As she holds tightly to my hand and we stare together at the lights changing from red to green to blue, I hug her against me, remembering how much I longed for an older sister who would hold me during those scary and lonely nights of spasms and nightmares.

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.

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.

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 top 5 Jodi Picoult quotes to help you change your life.

17 Nov

I absolutely love Jodi Picoult. She’s one of my favorite authors, which is most likely because I love how all her books make me think. I’ve always loved the way Jodi Picoult writes, and she is one of those writers that somehow knows the words that I feel without me having to utter a single word. I’ve never understood it, but it’s a concept that I’ve come across with other writers as well (John Green, Lucy Grealy). Though Jodi Picoult’s words haven’t necessarily changed me, they have helped me realize the aspects of my life that I hope to change.

1. “Maybe who we are isn’t so much about what we do, but rather what we’re capable of when we least expect it.” – from My Sister’s Keeper

This quote, though it’s simple, gives me hope. It is a reminder that yes, we will all make mistakes, but those mistakes shouldn’t be what others constantly focus on. Instead, we should remember the moments that we were strong, courageous, and brave. For instance, people have always told me how strong I am for what I have been through. However, I never know how to respond. I was strong because I had to be. There was no other choice. This quote helps me to see that strength that is within me, even though there are countless times in which I’d prefer to not always have to be the strong one and simply let someone take care of me.

2.“Sometimes to get what you want the most, you have to do what you want the least.” – from My Sister’s Keeper 

For me, this quote relates to the concept of writing my memoir vs what I what to achieve through writing my memoir. I want acceptance in myself, but more than that, I want other kids with disabilities and other kids who also go through horrendous surgeries to know they are not alone. However, to get to the point where I can help other kids like me, I have to do the hardest thing I’ve ever attempted: I have to relive the memories of my childhood so that I can write them down. Though it’s a painful process and sometimes I’m not entirely sure why I keep on writing, I think of the kids that are lying in hospital beds feeling scared and more alone than a widow on Christmas. It’s because of those kids that I keep on trudging through, because once upon a time, I was one of them, and I spent so much time wanting for someone who could understand. And that person never came. So I want to be that person for other kids. I have to be, because feeling like no one understands when you’re going through the most intense physical pain of your life…that’s the worst feeling there is.

3. “You can’t look back – you just have to put the past behind you, and find something better in your future.” – from Salem Falls

This quote has definitely been the kick in the pants when I’ve needed it. I’m naturally one of those people who focuses on the words “what if.” However, reading this quote always helps me to reminder that I just need to look ahead rather than always focusing on what might have been, because keeping my eyes glued to the rear view mirror isn’t going to do me much good. Instead, I need to look ahead and realize that the people who are in my past are there because the things that I’ll find in my future will be so much better.

4. “You might have to lose control before you could find out what you’d been missing.” – from Nineteen Minutes

This quote is similar to saying “Sometimes you have to hit rock bottom to realize what you had.” It’s all about perspective. Sometimes, all we need is a shift in perspective, a chance to look at a situation in a different way in order to focus on what’s really important. I definitely know there have been times where I have lost sight of what’s truly important because I’ve allowed myself to get too bogged down by the petty things that won’t mean much in the long run. By changing my perspective and realizing that focusing on the important things are what really matters, I learn more from the situation, and I’m able to be happier.

5. “Just because fate had thrown another obstacle in my way didn’t mean I had to give up my dreams.” – from Harvesting the Heart

Dreams are a special thing. They give us a purpose, a direction to move towards. I am one of the fortunate people who knows the feeling of being able to live my dream: writing about my own life in order to help other kids who have been through something similar. However, I know that for many people, dreams reside in the distance. They are present, but they are regarded as things that don’t always deserve the right amount of attention because there’s not enough time or money or space. Living a dream isn’t supposed to be easy. You’ve got to work for it, every day. But the feeling you get when you realize you’re living it…when it’s staring you in the face and giving you more joy and purpose than you ever thought possible…that’s a feeling that borders on miraculous.

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.