Tag Archives: Fear

Why I Love Working With Dying Children.

2 Dec

I read an article recently by a woman who teaches poetry and prose to dying children. Throughout the article, the author regularly mentioned how a certain little boy’s death would one day prevent her from ever returning to work. That little boy became another little girl who became yet another child. They all faced something we don’t talk enough about: death. Eventually, the author mentioned how this work contains so much sadness and fragility, and yet it is also the work she could never dream of walking away from.

Ever since August of 2013, I have been interning with Arts For Life, a NC-based non-profit organization focused on teaching art to children and families battling serious illnesses and disabilities. Specifically, I work with two populations of children: children undergoing treatment for cancer and other blood disorders and children undergoing physical, occupational, or speech therapy. I began this internship for a variety of reasons. However, the main one was due to my previous hospital experiences. As a child, I had to undergo three intense surgeries, which later included intense physical therapy, and I spent all this time in the hospital. During this time, the one bright spot in all the days of physical pain, tears, and uncertainty was the weekly craft nights. For one hour every week, I got to focus on making an art project rather than dwelling on how much pain I was in, which exercises I needed to do, or an upcoming surgery. Having a chance to put all my energy into something completely outside of myself helped to decrease some of my anxiety. Some of those nights, I dare say I might have even been happy. Due to my enjoyable experiences with art projects in the hospital, I knew I wanted to provide these same opportunities for other kids in the hospital.

Ever since I started teaching art projects to kids in the hospital, I have loved every minute of it. I love seeing the regular kids every week who have finally gotten used to me and will come up and just start talking. I love watching the kids burst with creativity, coming up with an alternative project I hadn’t even considered. I love seeing the smiles on their faces when they finish their project and run to show their parents. I love finding new ways to teach the children. However, more than anything, I love being able to take in all the different lessons they’ve ended up teaching me without even knowing it.

They have taught me the true meaning of strength. They have taught me what it means to not let an illness define you. They’ve taught me how “art” and “perfect” are rarely in the same sentence, and that’s perfectly okay. More than anything, they’ve taught me the importance of noticing the small things. One little girl I know is battling cancer, and yet she is one of the happiest little girls I know. She smiles, she laughs, and she plays. Most importantly, she does one thing I believe we often forget. She notices every moment: every smile, every time of laughter, every speck of blue sky. She absorbs every single piece of life, soaking it all in. I try more and more each day to live like her, but I’ve got a long way to go.

Numerous friends have asked me how I am able to be around kids who are dying. And you know what my response is? “How could I not?” These kids need me. They need the chance to be able to fully express themselves. They need a positive person in their lives who can bring something good into their hospital experience. They need someone who cares. A few years ago, I never imagined that person could be me, and yet, here I am.

I have yet to lose one of the children I teach. The more I read the article written by the woman who teaches poetry and prose to dying children, the more I’ve begun to understand that we all deal with death in our own way. How I react to losing a child I teach may not be the same way one of the child’s nurses might react. That being said, the important thing to remember is even if I lose I child I teach, there are still tons of other children who need me. Though one day may feel quiet as I mourn the loss of a particular child I cared for, there will be more children coming to clinic the following day, and I need to be the best I can be for them. Being sad around them isn’t my job. If I’m sad, they’ll get sad. That’s why positivity is so important.

Teaching art to children with serious illnesses and disabilities is not easy, but it is the first thing I’ve ever done that’s given me a deep sense of purpose. Seeing the smile on a little boy’s face means I was part of his happiness. Having a little girl cling to my leg begging me not to leave warms my heart more than she will ever know. I just hope one day these children will know how much they have changed my life.

Be kind, for everyone you meet is fighting a hard battle.-Plato

Disability Discrimination: A Problem We Need to Talk About

15 Nov

This week, I gave a presentation on disability discrimination in one of my college classes. I had been doing research for the past few months, and I enjoyed bringing this problem to light since it is very personally relevent. Therefore, I knew I had to share it with the blogging community as well

The Americans with Disabilities Act defines an individual with disabilities as someone who has a physical or mental impairment that does not allow them to perform one or more major life activities, and disability discrimination is the act of not viewing individuals with disabilities as fully functioning members of society whose voices deserve to be heard.

Disability discrimination occurs most commonly in the workplace, and it stretches across many different disciplines as well, such as psychology, law, and education. Within the field of psychology, discrimination is harmful for individuals with disabilities because it may lead to feelings of isolation, anger, depression, or anxiety. Within the field of law, disability discrimination is the least discussed type of discrimination law. Furthermore, within the field of education, the presence of disability discrimination perpetuates the feelings of exclusion found in school systems. Disability exclusion also increases fear aimed towards individuals who are different.

(from The Today Show)

The problem of disability discrimination is serious, and it influences individuals with and without disabilities. There is not just one group at fault. Each one of us is responsible for the persistence of this problem, and it is a problem that deserves to be discussed in order for individuals with and without disabilities to feel comfortable in the world in which they live.

But the question is: What can we do?

  1. At an individual level, we should strive to understand that instead of disabilities being something that causes these kinds of individuals to be seen as less deserving of being heard, the differences should be seen as a contributing factor to create a unique society with more perspectives available.
  2. At a university level, disability awareness events could be very beneficial. By providing awareness to disabilities, college students and faculty may be able to better understand the struggle of living with a disability, visible or invisible, which they may not have otherwise been exposed.
  3. We should use person-first language: “individual with disability” rather than “disabled individual.”

Disability discrimination is a serious global and ethical issue within our society today. Since I have a physical disability of Cerebral Palsy, I can attest to the importance of inclusion. My experiences of exclusion made me stronger, but the times I felt included helped shape me into who I am today.

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Autmn in the Mountains

My First Speaking Event: Cerebral Palsy and Bullying

30 Oct

Last Thursday, I had my first speaking event. I spoke to an elementary school book club in Asheville who had read Out of My Mind, in which the main character in the novel has Cerebral Palsy, the same disability I have. I was asked to come and speak about being bullied in school because of my Cerebral Palsy.

Below is the talk I read to the students and their parents of the book club (disclaimer: I have changed the names of people in order to protect confidentially):

When I was 7 years old, I played on a coach’s pitch baseball team, and there is one game I’ll never forget. I was up to bat, and my coach, Mr. Mark, stood on the mound smiling at me. He pitched the ball, and even though I hit the ball, it didn’t go far. It landed close to Mr. Mark’s feet. There was a player from the other team standing behind Mr. Mark, but Mr. Mark grabbed the ball and kept it away from the other player. At first, as I was running to first base, I didn’t know what was going on. I just knew that the first baseman hadn’t caught the ball yet, so I kept running. As I was almost near third base, the biggest grin spread across my face as I realized what Mr. Mark had done: he was giving me my very first home run. I remember running as fast as I could from third base to home plate, and as soon as my feet touched home plate, everyone in the crowd jumped to their feet and cheered for me. In that moment, I got to be a normal kid, and I got to feel the happiness that comes with completing a home run. If only for one night, I wasn’t a girl with Cerebral Palsy. I was a baseball player, a team member, and probably one of the happiest people in my hometown, if only for a moment.

Just like the character of Melody in Out of My Mind, I have Cerebral Palsy. Though I am not in a wheelchair or unable to talk like Melody, my Cerebral Palsy affects the way I walk because my muscles are really tight and because I don’t have very good balance. Because of being physically different, I was always an outcast in school. I had trouble making friends, and it was hard not having someone who knew what I struggled with on a daily basis. When I walk, it is very evident that I am different, and because of my visible differences, I was an easy target for bullying in school.

I had my first bullying experience when I was in kindergarten. At that age, I had to use canes to help me walk. Because of having to use canes, I wasn’t able to walk very quickly, and there was a girl named Ashley who enjoyed picking on me because she knew I wouldn’t be able to run away. Every day on the playground during recess, Ashley came up behind me and pulled my hair. It wasn’t a friendly pull either. She grabbed a fistful of my hair and yanked as hard as she could, laughing as I screamed in pain. She pulled so hard that I couldn’t even try to get away from her. Every day, I came home crying, and every morning, I woke up dreading having to go to school and see Ashley on the playground. I felt like crying when I realized I was completely alone. No one was sticking up for me, and it made me really sad. One day, my teacher, Miss Sandy, came up to me and told me to hit Ashley with one of my canes to help her realize that what she was doing was hurting me. See, Ashley was mentally disabled, so she didn’t know any better, and hitting her was one of the only ways Miss Sandy knew to make her stop. I never did hit Ashley though. I couldn’t do it. Hitting her would make me just like her: someone who wanted to hurt someone else. I don’t think Miss Sandy really wanted me to hit Ashley though. She was just trying to teach me the importance of trying to stand up for myself. In many ways, it felt impossible. How was I supposed to stand up for myself when it felt like I didn’t have a friend who would stand up for me?

I’ve struggled with forming friendships my entire life. As a kid, I wanted friends more than anything. I think that is the reason I never told a teacher that kids were making fun of me. I became afraid that once I told a teacher, the people who picked on me would call me a “tattle-tale” and the other kids would distance themselves even more. Because I was so physically different from the other kids in my class, all I wanted was to feel like I fit in. In my early friendships, many of the people who became friends with me were my friends out of pity. Even though they didn’t specifically tell me that, I could tell it was true. I could tell by the way they looked at me that they felt sorry for me. When I was young, I kept those friendships anyway because all I wanted was a place where I felt like I belonged. Many of those friendships didn’t last long though because most of the people who had been spending time with me left when they got tired of pretending to be my friend.

It wasn’t until I became friends with a boy named Tommy in first grade that things began to change. Tommy was the first person to visibly stick up for me. He confronted the people who picked on me, telling them it wasn’t okay to pick on someone who couldn’t help that she was different. Tommy’s friends laughed at him for sticking up for me, but he didn’t care. He stuck up for me anyway and was there for me no matter what. Tommy also saw the numerous people who became friends with me because they felt sorry for me. He knew how much that hurt me. Even though Tommy wasn’t disabled, he saw how I cried day after day when another person I thought was my friend just got tired of trying. Tommy’s presence in my life didn’t stop other kids from picking on me, but I began to feel a little less alone. Even now, I don’t have many friends. However, the few friends I do have are incredibly close to me, and I am happy to say that one of those friends is still Tommy.

When I was in fifth grade, I took a required PE class. In my PE class, dodge ball was typically the game of choice. Every week in PE, I was chosen last for dodge ball. I even remember one particular day when one of my friends, Allie, was the team caption. This made me excited because I thought: Yes, finally! I won’t be picked last because Allie will choose me since we are friends. The team picking began, and I waited with excitement for Allie to say my name. I looked towards her with a smile on my face, and my smile faded as I realized she was picking everyone else but me. Finally, it came down to Miranda, a girl who had just broken her leg, and me. It was Allie’s turn to pick, and I started to inch towards her. And then you know what happened? She chose Miranda over me! Miranda, the girl no one liked because she was so mean, and the girl who couldn’t even move as well as me because she had broken her leg. I couldn’t believe it!

As I got older, I thought the bullying would stop, but it didn’t. The summer after my sophomore year in high school, I attended a creative arts camp. One day I was walking back from a creative writing class, and out of the corner of my eye, I saw a girl named Lauren imitating the way I was walking. I turned to her and said, “Hey, what are you doing?” “Imitating the way you’re walking,” Lauren said. When I asked her why, she explained that she was supposed to observe people as an assignment for her theatre class. Even though I told her she hurt my feelings, Lauren didn’t listen. As I walked away, I watched as she laughed and continued to imitate me. I ran back to my room and cried, so sad and frustrated that I was still getting picked on. Even at an older age, getting picked on hurt just as much, if not more. Lauren knew what she had been doing. She saw how I cried in front of her, and yet she still continued to imitate me and laugh at me. I couldn’t understand why she would be so mean on purpose. I ended up telling a staff member about what happened, and she contacted the teacher to find out that it was never a class assignment. The next day, though, something good happened. Lauren did the one thing I never thought she would ever do: she said she was sorry.

Being bullied, either physically or emotionally, is hurtful for anyone, but it’s especially hurtful if someone bullies you for something you have no control over, like a physical disability. My bullying experiences have affected me my entire life. I remember the details of every bullying experience I’ve ever had. I remember how alone and broken they made me feel, and how it seemed like the bullying would never stop. Typically, kids in school try to be different because they don’t want to blend in with the crowd. For them, it’s important to stand out. In my case, I have always been incredibly different, and all I have ever wanted was to be normal. My differences have never stopped me from trying to be as independent and normal as possible though.  I have Cerebral Palsy, and I am a survivor.

Speaking at this event was an incredible experience. I was nervous to speak about my bullying experiences since they were a part of my life I had never verbally discussed before. However, it was such a relief to finally talk about being bullied, and it gave me a sense of closure. It was also wonderful to hear from the kids in the book club and answer their questions. One girl in particular asked what my best grade in school was and what was my worst. It truly made me smile because I realized how wonderful it is to hear questions from kids. They make connections many of us as adults seem to have lost as we have gotten older, or maybe kids are just never nearly as shy to ask whatever seems to pop into their head. Either way, it was a great evening. I have even been asked to come back to that same elementary school to speak to the fifth graders, and my contact information has been passed on to two other elementary and middle schools in Asheville. I suppose it’s time to make myself some “business” cards!

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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)

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.

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.

Janine Shepherd TED Talk: A broken body isn’t a broken person.

6 Dec

Janine Shepherd TED Talk: A broken body isn’t a broken person

Despite this TED Talk by Janine Shepherd being her story of recovery after getting hit by a truck during a training bike ride for the Olympics, it is also an incredibly inspirational story about the power of the human spirit.

Even though my Cerebral Palsy wasn’t something that “happened” to me and rather something I was born with, I can relate to so many of Janine’s feelings that she expresses during her journey of recovery. Despite Janine’s accident, she eventually finds something that allows her to find a new, if not better, dream. In many ways, I can relate to the idea of having a situation allow you to discover something you never thought possible before. No, my Cerebral Palsy is not an “accident,” but through the slow process of learning to accept it (as well as all the emotions that go along with it), I have discovered that I want to help others realize that they too can have dreams despite their disabilities.

Writing is and has always been my dream. Though there was a period of time that I took a step away from it, I came back…as all true writers do. I took a break from it because I realized I was beginning to feel as if I was writing for others instead of myself, which was taking the joy and love out of what I was doing. However, I’ve come back to it…in a much different way, but with so much more gusto. During the years of my surgeries and intense physical therapy, I did write about what I was facing. I came across the original copies of those stories last year when my parents were getting ready to move from my childhood home. As I sat on the bedroom floor of my childhood home, I was transported back into the mind of an 11-year-old girl who was feeling so many different versions of pain, and yet was still able to describe what she was feeling and seeing with uncanny accuracy.

Even though the early stories that I wrote regarding my surgeries lacked the level of understanding that I have uncovered over the last year, they have provided me with a way to remember the details. I often forgot how much we are able to take in during our younger years, and through reading my own life experiences through the eyes of my 11-year-old self, certain details came back to me: details that will do nothing but increase the level of authenticity within my memoir. Yes, the raw truth with which I wrote when I was going through my intense surgeries was hard to take in all in one sitting. However, it was necessary. Reliving it all is honestly what the process of writing my memoir and sharing my story is all about.

Maybe I will share one of those stories with all of you one day. But for now, they are for me. They have provided me with the perspective of my younger self, and there’s something truly special about having that ability. Incorporating the perspective of my younger self with the understanding I have now is just going to make the journey of sharing my story with the world even more powerful.

Why we need more memoirists.

10 Nov

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

Though I do love everything about this quote from the afterword of Lucy Grealy’s Autobiography of a Face, the last line of the quote is what really speaks to me. Since I am in the process of writing my own memoir, over the past few months I’ve vowed to read more memoirs to gain a greater understanding of the genre I’m trying to be a part of. Spending more time reading memoirs rather than fiction, I’ve begun to realize what’s so appealing about them. Memoirs tell the stories of people…they dive deep into the love, pain, fear, excitement, love, and joy that has filled each and every one of those stories. People love reading about people. That’s a fact. However, more than that, I think memoirs allow readers to find pieces of themselves in the memoirist, even though the understanding behind those pieces may feel unclear. Either way, those pieces, however different, provide connection…a sense of belonging that was otherwise lacking.

It may seem obvious that the desire for more memoirists in our society is strong. However, though that may be true, the fact of the matter is that writing about one’s own life isn’t easy. It’s hard. Really, really hard. It’s the process of stripping away every mask that you’ve hidden behind for much of your life. It’s what happens when you force your true self out into the harsh light of day, continually resisting the urge to look away in shame. In my opinion, writing a memoir shows vulnerability. It shows courage, strength, and every emotion that we experience throughout our lives. Through vulnerability, it shows authenticity in its rarest form, and that in itself is truly miraculous.

Through reading Lucy Grealy’s memoir, Autobiography of a Face, I’ve started to understand just what memoirists can offer. Other than providing us with the obvious pieces that connect to form a complete, living, breathing life, memoirists give us the opportunity to embrace our own vulnerabilities rather than shrinking behind them. They allow us to come face to face with the contentment that results from being able to face your past, scars and all, head on. They give us the chance to find our true selves, no matter how frightening or foreign that part of us may be. They present us with the opportunity to love ourselves, which in turn allows others to love us just as much, if not more.

“Mommy, why does she walk so funny?”

9 Nov

I don’t remember the day when I became uncomfortable with myself. I just know that I went from being a kid that wanted to experience every part of life with no regard for the opinions of others to a girl who viewed herself based on the ways others thought of her and treated her. Though I may not remember the specific day when my attitude about myself began to change, I know that it started with the staring.

Being physically different from your peers is especially hard for an obvious reason: since you’re not like your peers, you’re “different,” and being different isn’t “the norm.” Even though I find it sad that the concept of being “different” is primarily a culturally constructed concept that is perpetuated by societal attitudes, it’s not surprising. Due to “differences” being culturally constructed concepts, it makes sense that the act of staring is at the center. The center of making those who are different actually feel different, even if they may not think they are that much different from those around them (at least in the beginning). Having others openly stare at them automatically separates them from the crowd that they are trying so hard to fit into.

In the early days of noticing how others would stare at me, it felt like a punch to the gut, causing me to feel like the easy target, unable to move or even breathe. The moments that hurt the most were those in which my differences were noticed through staring as well as through vocalization. I remember one specific day that I was in the grocery store with my mom. As we came to the isle of milk and eggs, there was a little girl who walked past us with her mother. I watched the little girl as she moved past us, knowing that any second she’d turn around and her eyes would lock with mine, her mouth hanging open in shock and surprise. The girl saw me as she was walking towards me, and the staring began. The stare started at my feet, and the girl noticed the way that my feet pointed slightly inward as I walked. The girl then looked at my legs, focusing on the way that my knees knocked together as I walked. Eventually, the stare landed on my face, and the curiousity that I saw in her eyes was mirrored in my own. By the time the stare reached my face, the little girl couldn’t look away, not even for a second. Even as she and her mother walked past me, she would turn around and look back at me, still holding her mother’s hand but so engrossed in me that she wasn’t paying attention to where she was walking. Then, ever so slowly while trying to keep her eyes on me, she’d turn to her mother and ask, “Mommy, why does she walk so funny?” The words stung, and I walked away before I could hear the mother’s response. I followed my mom through the grocery store, thinking back over and over to the little girl’s question, wondering what the answer was. That simple question as well as the sadness and uncomfortable feelings that were associated with the staring has come back to me on a daily basis throughout my life, and even now, it’s no less painful than that early memory in the grocery store.

In the early days of the staring, if my mom caught someone staring, she’d look at them, smile and say “Hi, how  are you?” Even though I knew that my mom was implementing the “Kill them with kindness” approach, I could never make myself do it. For reasons I can’t quite explain, the stares were such a shock that I couldn’t even speak. Over and over, the stares of little girls and boys, and even adults, seared into me, searching for answers. Since I was as far from the answers as they were themselves, I looked away, not wanting anyone to see the pain that was reflected in my eyes. It wasn’t until I was home in the comfort of my bed with a stuffed animal in my arms that I allowed myself to cry. I allowed the tears to fall over and over, hating the kids who stared at me so much and hating myself for letting their stares have such an effect on me. After I couldn’t cry anymore for the night, I’d look up at my ceiling fan, watching the shadows of the blades reflected on the ceiling, wondering if there would ever be a day when I’d feel normal.

Even today, at the age of 20, the stares still affect me. Though I no longer cry at night because of them, they make me angry. Angry at the people who can’t accept that there are people in the world who look different from them, angry that the parents of kids who are gaping at me don’t explain to their children that it’s not polite to stare, angry at the adults who are in their 40s and still gape at me from across the grocery store, not even trying to hide their surprise at the way I walk. Angry at myself for still being so far from the answers as I was as a child, silently hoping that one day it will all make sense.

Mirrored in Truth & Beauty.

5 Nov

Last night, I started reading Truth & Beauty by Anne Patchett, which is a memoir of Anne Patchett’s friendship with troubled author and poet, Lucy Grealy. Here is a synopsis according to GoodReads:

Ann Patchett and the late Lucy Grealy met in college in 1981, and, after enrolling in the Iowa Writers’ Workshop, began a friendship that would be as defining to both of their lives as their work. In Grealy’s critically acclaimed memoir, “Autobiography of a Face,” she wrote about losing part of her jaw to childhood cancer, years of chemotherapy and radiation, and endless reconstructive surgeries. In “Truth & Beauty,” the story isn’t Lucy’s life or Ann’s life, but the parts of their lives they shared. This is a portrait of unwavering commitment that spans twenty years, from the long winters of the Midwest, to surgical wards, to book parties in New York. Through love, fame, drugs, and despair, this is what it means to be part of two lives that are intertwined . . . and what happens when one is left behind.

This is a tender, brutal book about loving the person we cannot save. It is about loyalty, and being lifted up by the sheer effervescence of someone who knew how to live life to the fullest.

Since starting this book, I have seen myself in Lucy Grealy. Though I have not faced what she went through, the loneliness, fear, and desire to belong are all feelings that I have known all too well. Lucy’s words throughout the novel (seen especially in the letters she writes to Ann), are heartbreaking and brutally honest, but in more than one point in the book, I have felt like the words have been taken from my own soul. Even though this is definitely not the first time that I have seen myself mirrored in the emotions of someone else, I feel like this is one of the few times that it’s been so spot on. Throughout the book, Lucy exhibits numerous times when she is down on herself due to her situation. However, that being said, she is a poet, and writing is the way that she comes back to herself. Writing and her friendship with Ann are what allow her to come back to her reality with gusto. Though I am only about halfway through the book at this point, I have found myself, on more than one occasion, clutching the book almost like a life-line, holding it close to my heart and whispering words from the novel that seem to apply to my own life.

“Writing is a job, a talent, but it’s also the place to go in your head. It is the imaginary friend you drink your tea with in the afternoon.”

When I came across the above quote, I smiled. I smiled with the realization that during certain times in my life, I too have viewed writing as a friend, as the friend who is always there, day or night, waiting to welcome you home with open arms and a carton of ice cream. Yes, the ice cream addition was my own tid bit, but it’s what writing has been for me for so long: the one thing that I can come back to, again and again, like a long-lost friend that you never seem to lose touch with no matter how much time has passed. A friend with whom you can pick up right where you left off, as if you saw them just yesterday and not years ago. Thankfully, I have had the pleasure of having more than one friend like that in my life, and it is one of the best feelings I have come to find in this life. Sure, there are other things that come close to that kind of magic, but they aren’t moments that are also full of deep conversations that last into the early hours of the morning or moments of laughing until your stomach hurts.

“That is one thing I’ve learned, that it is possible to really understand things at certain points, and not be able to retain them, to be in utter confusion just a short while later. I used to think that once you really knew a thing, its truth would shine on forever. Now it’s pretty obvious to me that more often than not the batteries fade, and sometimes what you knew even goes out with a bang when you try to call on it, just like a lightbulb cracking off when you throw the switch.”

Truth & Beauty is full of more honesty than I can only hope to achieve one day with my own memoir. It’s not even just honesty that causes you to pause and think, That’s got to be truth. Those feelings are so raw that the only place they could have come is from the deepest and most authentic part of the soul. It’s more than that, if at all possible. It’s sitting on the kitchen floor with a cup of coffee in one hand and the book in the other, staring down at the page and thinking, I can only hope that one day I am as in touch with the deep and dark parts of myself like this author is able to portray. Though I have become incredibly introspective since beginning my memoir in January, I have not reached this level of raw authenticity. To do so, I believe it takes many more months, if not years, of sitting in the dark corners of your memories patiently awaiting the day when they decide to come out into the harsh light of day. You’ve got to sit in the dark and get to know them on a level that’s more true than you’ve ever known. You must sit with them, day and night, until you know their features and ways in which they move through the world. Until your breathing matches their own with such accuracy that you can no longer tell the difference between your breaths and theirs.

“Our friendship was like our writing in some ways. It was the only thing that was interesting about our otherwise dull lives. We were better off when we were together. Together we were a small society of ambition and high ideals. We were tender and patient and kind. We were not like the world at all.”

Though I am lucky to have an incredible best friend, when I read the above passage, the first thing that popped into my head was the level of comfort that can only be achieved through a childhood friend. I thought of a friend that I have known since kindergarten, and the nights that we would lie in my bed and stare up at the ceiling, talking about our futures like they were millions of miles away. The nights that we would hold hands when we got scared in the middle of the night, only to end up burying our faces in pillows a moment later when we were overcome with laughter. We looked at each other then, smiling and breathing heavily once the laughter subsided, not even knowing what we found so funny, and yet realizing that nothing could top the happiness that had been wrapped up in that moment. It enveloped us, that pure bliss, wrapping us up like a quilt that was stitched with every happy memory of our relatively short lives. We knew, no matter what, that we had each other.