Tag Archives: Anxiety

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

The power of a calling.

13 Dec

“The more scared we are of a work or calling, the more sure we can be that we have to do it.”

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.

A conversation with my younger self.

21 Oct

Sometimes I imagine what it would be like if I had the opportunity to speak with a younger version of myself. I wonder what I would say. I wonder what advice I would give to my 7-year-old self, the little girl with the nervous smile who has yet to go through 3 intense surgeries and many, many years of physical therapy. I wonder how it would feel to talk with someone who I knew so well, but yet couldn’t completely relate to since she hadn’t yet gone through all the pain that she would experience in her future. I wonder…

I’m sitting on a bench in a small park that I don’t recognize. There is a playground with swings and a play set, which are all just a few feet from where I’m sitting. Kids are playing in every available space in the park, but I feel like I’m a thousand miles away from their voices. It’s not until I hear her bubbly laugh that I know where I am. As I look over at the play set, she climbs out of the tube slide, practically falling right out into the sand because she’s laughing so hard. A moment later, her eyes lock with mine, and I know. The girl with the nervous smile, bubbly laugh and bright blue eyes is the younger me. However, it’s not until I look down a second later to see the braces on her feet that I’m certain my assumption is correct. Even though my stomach feels like it’s flipped inside out, I get up from where I’m sitting and walk towards the younger me.

“Hi, can I play with you?” I ask. She looks up at me with the hugest grin on her face.

“Yes, but only if we sit right here in the sand. I don’t really want to get up.”

“That’s perfectly fine, Amelia,” I say, as I sit down in the sand beside her.

She is focused on putting her arms as far down into the sand as she can, so it takes her a moment to realize what I said.

“Wait, how did you know my name?”

“Because I’m you. I’m you at 20 years old. We are the same person.”

The younger Amelia looks at me quizzically for a second, and then asks, “Does this mean that we can be friends?”

I can’t help but laugh as I remember what I was like when I was younger. Even at the age of 7, I wanted acceptance. More than anything, I wanted friends. Though those two things are something that I still find myself longing for, it was intensified when I was younger. It was often the only thing I could think about since it held such a strong connection to being just like the other kids, the “normal” kids.

I find myself staring with amazement at my younger self, wondering where to even begin.

“You have a wonderful best friend waiting in your future. In fact, there are many, many friends that will be in your life. However, the one I’m referring to, she’s everything you’ve ever hoped for in a best friend.”

“Why can’t she be here now?” the younger me asks.

“She hasn’t met you yet. She won’t come into your life until you’re 16, but I promise you, she’s the kind of best friend that you have always wanted.”

Instead of concentrating on playing in the sand, I now have the attention of my younger self as she looks up at my face with curiosity, so I continue.

“You’ve got a long road ahead of you, and it’s not something that anyone is going to able to prepare you for. It’s going to be incredibly hard. However, trust me when I say that you can get through it. It’s going to feel close to impossible some days, especially on the days when the pain gets really bad, but I promise you’ll get through it.”

The younger me then looks down at the braces that are on her feet and touches the plastic ever so lightly with her fingertips.

“I’m scared,” she whispers softly.

“I know,” I say. “It’s okay to be scared.”

“You’ll get stronger,” I tell her. “It may seem overwhelming now, but eventually it becomes like second nature. You’ll fall, time and time again. But you know what’s amazing about you?”

The younger me looks at me expectantly, but I know her nervousness lies just below the surface.

“You get back up…every time,” I say.

“Why? Why do I have to keep trying?” she asks.

“Because it’s the only way you can move forward. It’s the only way you can be independent.”

Even though I see the younger me roll her eyes at me, I know that my words are impacting her because she takes my hand and squeezes it. As her fingers link with mine, I am overcome with love for the little girl who has yet to know the intense pain that she will face. I have to look away from her before she realizes that I’m crying. As I wipe away my tears, I look off into the distance to see the sun setting behind the trees.

“I have to go soon,” the younger me says.

I nod, unable to say anything. I don’t know if I’ll be able to walk away. However, I say the one thing I’ve wanted to tell her all along.

“I love you. So so much,” I say, letting the tears fall and knowing that the younger me doesn’t grasp the magnitude of this moment. If only she knew that I would save her from all of this pain if I were able to. However, deep down, I know that I can’t do that. She has to go through it. She has to go through it if she wants to become me.

She hugs my legs tightly, and the warmth of her small body against my own makes me smile.

“I’m so happy that I get to be you when I get older,” she says.

She turns to go, and as I watch her walk away from me, her last words weigh heavily on my mind. Though she may want desperately to be me, I know that I need to remember to be her as well. I know that little girl is still within me, and she is showing me just as much love as I wanted to be sure and show her.

To Grace (Part 5): Gaining strength in little fears.

8 Oct

Here are the previous posts in this series. Take a look! To Grace. To Grace (Part 2): Walking Through The Fire. To Grace (Part 3): Accepting Love. To Grace (Part 4): Finding Your Voice.

Dear Grace,

Saying that I’ve been feeling scared recently is an understatement. Over the past month, my muscles have gotten tighter than usual, which is causing me to fall more. Even though I know the increase in muscle tightness is connected to the colder weather, it is still scary, and it often causes me to worry about years in the future where my walking could become limited due to tight muscles and severe back pain. I don’t know how much you worry about the future. Even though you are only 12, I know what you’ve been through so far in your life. I know your pain. Therefore, I wouldn’t be surprised if you did find yourself worrying about the years ahead. However, since I know how much I worry, I do hope that you don’t find yourself worrying as much as me. It’s not emotionally healthy. I think it causes me more anguish than happiness. Though it is something that I’m trying to work on, it’s not as easy thing to fix since I’ve had trouble with anxiety ever since I was a little girl.

You and I are incredibly similar in the hobbies we’ve had over the years. We both became involved in community theatre, and we also had years in which we both rode horses. Even though you were more involved in horseback riding than I was since you’ve participated in events and won blue ribbons, I know that it’s an activity that we both benefited from. Participating in “hippotherapy” was an alternative to constantly having physical therapy in same room with the same therapist week after week. Before I participated in “hippotherapy,” I thought that horse therapy was primarily used with autistic kids. I didn’t know that they could be used with kids who had physical disabilities as well. According to the American Hippotherapy Association, “Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.”

In terms of the hippotherapy that I participated in, I focused primarily on balance, trunk strength and control, and building overall postural strength and endurance. The specific exercise that I remember really well was called “around the world,” in which I’d start by sitting normally on the horse and then swinging my legs over the horse multiple times until I’d done a complete 360 while sitting on the horse. Now that I think about it, even though this activity sounds fun to me now, I was incredibly scared when I actually had to do it. The thought of falling was terrifying to me, and without the encouragement of my horseback riding teacher, Miss Mary, I know that I wouldn’t have been able to complete my exercises. Despite the fear of falling, it was an understandable worry since I did end up falling off multiple times. Even though I know those falls and having Miss Mary tell me I needed to get up and go get my horse was hard at the time, I know that it all made me a much stronger person. Miss Mary was a very important figure in my life because she was one of the first people (not counting my parents and my physical therapists) who helped me develop a tougher skin. Therefore, despite being afraid of falling and afraid that my horse would start to canter with the other horses (which was much faster than I ever wanted to go), I know that it made me stronger.

I know that your hippotherapy experience was probably much different from mine. However, I don’t doubt that you gained some of the same strength that I did when you worried about falling but then knew that your teacher wouldn’t let you fall. Either way, those little fears: the fear of falling, the fear of the horse going faster than you want him to, the fear of what lies ahead in our future in terms of our abilities, they are what make us who we are, Grace. We wouldn’t be who we are if we hadn’t learned in the beginning to let those fears propel us forward instead of hold us down. I don’t know how much that applies to you these days, but I have a feeling that you work hard too. We have to. It’s the only way through the situation we’ve been faced with. Without the strength that I’ve gained from the little fears in my life, I wouldn’t be where I am today. I wouldn’t be a junior in college who’s lived away from home since she was 16 and spends her days blogging and writing her daily story. I wouldn’t be able to talk so openly about what I have experienced.

I know how easy it is to let the fears bring you down, Grace. I’ve been there. I know how hard it is to push through and tell yourself that being more independent will be just what you need. But it’s the only choice we have. Keep on keeping on, and remember that I love you.

Amelia

It’s (almost) summer!

26 Apr

Well, I’m officially done with finals and moved out of my dorm. I’ve just got a short paper due on Monday that I’ll get done this weekend. Even though I’m very happy to be done and have the stress melt away, it was sad saying goodbye to my friends (especially 2 of my friends who are exchange students from England). I have loved my first year at UNCA (but second year of college). It’s been so amazing.

I’ve made some of the most incredible friends….ya know, those kind of people who you know you’re going to be friends with forever. It is such a great feeling, and I’m so happy that I got the opportunity to find a place where I belong. I know it takes some people a while to find that special place, while others seem to just be thrown into it…ya know, the people who just love a place from the start. That’s how it was when I visited Asheville for the second time though. I knew that it just fit me so much better. I was nervous as usual, but everyone gets nervous when it comes to new experiences.

Anyway, even though I won’t be technically on summer vacation until I write this last paper, I am eager to do lots of pleasure reading and have the chance to enjoy living in the mountains and not being bothered with schoolwork. It’ll be such a great change (at least for a little bit). Tomorrow I’m heading to Columbia to talk to one of my previous physical therapist’s graduate physical therapy classes about how things have been for me having CP. Though I have gotten better at talking openly about my CP over the past few months, the thought of standing in front of a class of graduate students and talking about my life is a little scary. I’m not exactly sure what I’ll say. However, I am pretty sure that Meredith (my previous physical therapist) will try to make it as easy on me as she can. However, that doesn’t take away from the fact that I’ll be standing in front of students talking about myself.

Though CP is a huge part of my life and I do want to share my story with the world, I’ve never really liked talking about myself too much. I just never want to take away from the possible things the other person I’m speaking with may be able to teach me (in regards to their own life). Friendship, and communication in general, is a two-way street, and I think many people forget that. Anyway, tomorrow will be interesting to say the least. However, I’m excited to hear what the students have to ask me and to hear what they are currently learning about. Since I had 15 years of PT, I feel like a pro to the terminology when it comes to comparing my knowledge to someone who has no background/experience with PT. However, it’ll be interesting to see what the PT students know in comparison to my own knowledge. After all, it’s never considered a bad day when you have the opportunity to learn something new.