Tag Archives: Uncertainty

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

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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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The good things about surgery.

24 Oct

What doctors don’t emphasize too much when it comes to surgery is that the actual surgery is the easy part. It’s the intense physical therapy afterwards that kills you. That being said, surgery is still a very scary procedure. Through all 3 of my intense surgeries, I was scared every time. Before each surgery, I had nightmares about waking up during surgery and seeing the doctors putting their hands inside my legs to straighten out my femurs. In my nightmares, I couldn’t speak. I remember screaming as loud as I could to try to alert the doctors that I was awake, but nothing worked. The doctors were too focused on straightening out my crooked femurs to pay attention to the traumatized girl on the operating table. However, thankfully, all of this was a dream. That doesn’t mean that it felt any less real though. I remember countless times when I woke up from this particular nightmare screaming and struggling to look at my legs to make sure they weren’t split open to expose my bones.

Despite the decent amount of fear and uncertainty that accompanied the intense surgeries I had, there were some pluses. First off, before each surgery, I got the autograph of the head surgeon. However, not in the sense that he signed a picture of himself and gave it to me. He signed my legs though. I later learned that he had to sign my legs so that he would be sure to do the correct procedure on the correct patient, and I definitely think that’s important. I didn’t want my femoral derotational osteotomy to be confused with a sex change. However, in my opinion, it’s more fun just to imagine the head surgeon wanting to give me his autograph.

Since the surgeries I had were incredibly intense, I was placed in the ICU following each operation. Though the groggy feeling and getting sick from anesthesia wasn’t fun at all, I had an epidural. Therefore, the pain wasn’t nearly as bad as it would be once the epidural was removed. Also, even though I slept a lot while I was in the ICU, when I was awake and finally ready for food (or when I could enjoy it without getting sick), I got to have as much ice cream and chicken noodle soup as a wanted. I even remember one particular time when I got my dad to go to the Chick-fil-A that was in another part of the hospital so that I could have some chicken nuggets and waffle fries. Though Chick-fil-A is normally incredibly yummy anyway, it was 100 times better after a huge operation. Trust me.

Most people don’t really think of presents when they think of surgery. However, they are connected, especially when you have your operations in a children’s hospital like I did. When I was younger (before all of my surgeries), I never quite understood why people received flowers and other gifts when they were in the hospital because, to me, the flowers didn’t really do much when they didn’t also include sunshine, birds, blue skies and everything else that’s connected with the outdoors. However, when I was in the hospital following my surgeries, the flowers were a comfort. Though it was hard to accept that I couldn’t just go sit outside and look up at the clouds, the flowers were the closest thing I had to being outside, and at that point, I’d take anything I could get. However, besides flowers, I also received tons of “Get Well Soon” cards and all sorts of presents from family, friends, friends of my family and pretty much anyone else who cared about me and wanted me to know that they were thinking of me. Though I don’t remember specific flowers or specific cards that I received, I do remember getting a stuffed animal hippo from my horseback riding teacher, Miss Mary. Though I ended up accumulating many stuffed animals throughout the time I spent at Shriner’s, my hippo is the one that is still very close to my heart since I got him after my very first surgery. He’s been with me through it all (including college), and I know that it will stay that way for quite a while.

Though I don’t recall having any incredibly good-looking doctors like the “doctors” on Grey’s Anatomy, I do remember Ben, one of the physical therapists at Shriner’s that I had a huge crush on. He had red hair, freckles and the cutest smile I’ve ever seen. Even though he wasn’t my physical therapist for an extended period of time, he did spend a few months with me while my regular physical therapist, Beth, was on maternity leave. Even now, it seemed close to perfect that part of my time with Ben coincided with Valentine’s Day. Even in the hospital when you’re feeling all kids of emotional and physical pain, it’s possible to have a crush. Trust me, I proved that. As you can imagine, when Ben gave me a heart-shaped box of chocolates on Valentine’s Day, I was over the moon. I think I may have even squealed a little bit when he handed me the box of chocolates. After all, it was one of the first times in my life that someone other than my dad was my valentine. Although, since I never had Ben as my valentine a second time, I think it was a good decision to stick to having my dad as my valentine from then on.

When in Ireland, travel to push through writer’s block.

3 Jul

After yesterday’s post (When in Ireland, write through the uncertainty) I have been really introspective. Introspective about my writing, my life, my current experiences. Though I normally get introspective when I talk about my writing, I was especially introspective last night.

I’ve been told that travel is great for writers because being in a new place with new people can help boost creativity and the writer’s spark that most writers can understand on some level. I agree that travel is a great way to broaden one’s perspective in order to create a writing style with more variety. However, what about those times when you’re traveling and you’re just blocked? Completely and utterly blocked.

Other than the uncertainty post I wrote yesterday, I’m pretty much stuck in a rut. I know I need to write. I need it like every single person on Earth needs water. However, I just can’t seem to grab hold of something that takes more than a day to write. I’m writing daily blog posts, and those are hard enough to get out these days. I’m used to my blog posts being pretty easy to write out. Even the posts that tend to be pretty emotionally heavy, the looming thought that I’ll feel better once I get the words out is what pushes me forward, what pushes me to keep typing until the only thing that I feel is relief, relaxation, and maybe happiness. Recently though, writing my blog posts has been hard. I love it. I do. I’ve felt so much happier since beginning this blog last November, and it’s never been something that I’ve had to force. I’ve always wanted to write my daily posts. I still do want to write them, even now. I guess it’s just not quite as easy right now.

As writers, I know we all get stuck though. And those of us who are true writers push through the writer’s block and keep on going. And that’s what I’m doing. However, that doesn’t mean that I’m not faced with moments where I’m staring at my computer screen waiting for the words to come to me. Waiting for them, all the while knowing that they will come eventually. They will. They have to. They are what I know, who I am, and what makes me feel alive.

When in Ireland, write through the uncertainty.

2 Jul

I have yet to sit down and write since I’ve been in Ireland (not counting this blog). I really do hate to admit that, even though I do have a pretty solid excuse of: I’m in Ireland. However, over the past few days, that hasn’t really felt like a reasonable excuse, partly because there have been snippets of days that I’ve just sat at my computer wondering what to say.

Attempting to work on my memoir while I’m here feels out of place and very foreign. And yet, at the same time, I hear that voice in the back of my head asking why it seems like such an impossibility. Truthfully, I can’t see why it is. Maybe it’s connected to the fact that I’m doing something huge right now and I want to enjoy every minute of it. Though I have no doubt that that may be part of it, I also know that my strong need to write has increased since coming to Ireland. I don’t know if it’s the beauty, being in a completely different country, or just being surrounded by so many different people. However, either way….I feel it. I feel the wheel’s turning in the way that only a writer’s mind can work, and I’m done ignoring it.

A few years ago, if someone would have told me that I’d be sitting outside of an Ireland university typing a blog post, I probably would have just smiled nervously and pushed it out of my mind. Come to think of it though, not much has changed…except for the fact that I am now in fact here, sitting outside of an Ireland university typing a blog post. The thing is, I’m still scared. I love it. It’s exciting and new and wonderful, but I don’t think I’ve ever been more scared. Not of anything in particular really. Just the uncertainty. The uncertainty of not really knowing what the next few weeks hold, all the while realizing that I’ve just got to grab it by the hand and run like hell with it. I don’t really have much of a choice at this point.

Uncertainty can be truly terrifying. Though I know I’m not to the point of “terrified,” this trip has tested my limits in ways I’ve never been tested before. Though I am with a group of students, I knew no one before coming over here…meaning that no one knew anything about me until they saw me on day one. There’s something wonderful as well as scary about that…having people around me who don’t know my history, my past, what I struggle with. Though I have only mentioned my CP to 2 people so far (my roommate and a guy in my group who asked last night), sometimes I have the urge to scream it from the rooftops while other times I’d rather just sit in silence. It’s hard to not say anything when I’m sure people are wondering why I’m lagging behind the group a bit or why I’m not staying in the same housing as the rest of the students in my group. Yes, a huge part of me is screaming, “It doesn’t matter!!!” but another part of me is wondering, “Would it put me at ease if I didn’t constantly have the worry about my group leaving me behind?”

My program directors know my situation, and they have been sure to include me in everything and make sure I’m an integral part of the group, which is good. However, that doesn’t mean that I don’t sit and worry about the group leaving me behind. Thankfully, it’s not a new worry, though at this point I don’t know if that would be considered good or bad. However, it is something that I’ve had to consider every time I’m put in a situation where a group of students is going somewhere, especially when it’s a kind of walking tour. Oh, walking tours, they are the bane of my existence. Okay, maybe not quite that extreme, but they still suck. So, that being said, the worry is not a new kind of worry, but I guess it’s at a new level, especially considering the fact that I’m in a new country with people who I don’t exactly know exceptionally well.

Realizing that this is something that no one else in my group is struggling with is hard, but it’s not a realization that is new to me. However, sometimes it would be nice if my worry was more “normal,” like worrying about cultural differences or staying in touch with people. Even though those worries have been on my mind, my mind is primarily reeling with the thoughts of trying to enjoy Ireland as much as I can without overexerting myself and trying to step out of my comfort zone to the point of where it gives me a thrill of excitement but not to the point of being utterly terrified.

So yes, the writing…the words…they were there. I guess I just need to sit down and sort through them, even if they don’t exactly flow. But you know, sometimes writers need disorder and chaos and confusion, and above all, uncertainty, to get back on track again…to feel somewhat in control again.