Tag Archives: Childhood Cancer

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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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.