October 4, 2013
by Barbara Cervone
NEW YORK, NY—Imagine you are eight years old and you’ve just learned you have a brain tumor and need surgery right away. As you enter the operating room, one of the doctors invites you to draw on her mask so that you will recognize her in the blur of surgery. You wonder how the doctors will put your head back together and you figure they’ll use super glue.
“I felt my childhood was split before and after diagnosis,” said Kayla, now a college graduate.
Every individual in this extraordinary group of eight brain tumor survivors, now entering young adulthood, remembers the moment years ago when they were diagnosed: Medulloplastoma, Pituitary Adenoma, Supraseller Germinoma. Brian recalls the burning plastic smell of the mask he had to wear during radiation treatments. Tom speaks of the year he spent in recovery, unable to talk, walk, or eat.
Brian, James, Jeremiah, Kayla, Mark, Rosalie, Steven, and Tom. They met a few years ago at the Children’s Brain Tumor Foundation (CBTF) after years of keeping their diagnosis secret from just about everyone. “It’s a scary topic,” said Steven, “both for the person who has lived it and the person you’re telling.” Denial promised mutual self-preservation.
At CBTF, the youth found their reflections and their voice with young people like them, who had been diagnosed with brain tumors as children and survived, but were burdened by isolation, worry, and lives interrupted.
So when photographer Annie Levy asked the group whether they would be wiling to gather images and words to tell their own stories, it pushed hard against the trust these young survivors were just beginning to grow. “I’d never been open about my experiences before, “ said Kayla. “There were big parts of myself that I’d hid even from myself.” We don’t give this information away easily, others agreed.
But they said yes.
Gathering images that illustrated the complexity of their personal narratives posed a special challenge (one that stumps even the most seasoned photograpers). How could I convey the endless waiting that's part and parcel of being a patient, Jeremiah wondered. He ended up photographing a clock on a hospital wall with hands that perpetually read eight minutes after five. How could I show the ways my life has become awesome (because medicine, when it works, is awesome), asked Mark. He decided to make a photo collage of him with his friends, hanging out and having a good time. When stumped by the task of finding just the right image to express a feeling, they swapped ideas on Facebook.
In late September, the group's 16-minute video “Patient Voice,” produced with the Photo ID Foundation, made its debut. With compelling black and white photographs and chiseled words, Rosalie, Kayla, James and their compatriots revisit their diagnosis, capture what they have found to be bad and good in the world of medicine, and share what keeps them going: photography, writing, creativity, drawing, helping other young brain tumor patients.
These eight young adults hope viewers will recognize their bravery. “We are sharing a secret that changed our lives,” Steven said. "For as long as I can remember, I didn’t want to be considered a cancer patient, I didn’t want to associate myself with the world of brain tumors and cancer. I just wanted to get back to what I was before my diagnosis, not realizing I could never do that. Making this film required a lot of courage and a lot of acceptance. We all became, in the process, detectives of our own lives."
A generous grant from the Arnold P. Gold Foundation made the project possible.
I'd like you to meet some of my friends. James is a college graduate, aspiring writer and mentor for Imerman Angels, Steven is a phenomenal photographer who is graduating with his bachelor’s degree this fall. Tom is a dedicated volunteer, CBTF brand ambassador and great friend. Rosalie is a passionate and creative artist and college student. Mark is an aspiring cinematographer who just started his first semester of college, Jeremiah is a talented artist who is currently looking to attend art school, and myself, Kayla, a college graduate who gives back by working for CBTF (Childhood Brain Tumor Foundation).
All of us are brain tumor survivors. The only reason I picked these names out of the hundreds of survivors we work with every day is because most recently, I was part of a project called Patient Voice which was a photo documentary project that is set to our narrations of various topics related to us and our diagnoses. This project was created in collaboration with Annie Levy of the Photo ID Foundation and through a grant from the Arnold P. Gold Foundation, made with the intent to show to various medical institutions as a tool to teach doctors about the lives of brain tumor survivors outside of the hospital and to make them more sensitive and understanding of what we go through.
If I were to list the names of all of the survivors I know with their dreams and accomplishments, this blog would go on for pages and pages!
What made me start to think about all of this was that after the class’s viewing of the finished documentary, a woman by the name of Barbra Cervone, who writes for an organization called What Kids Can Do, interviewed the class about the project. She asked each of us what we’re doing now. The above mentioned are the things that we told her. Day to day, I seldom think about the accomplishments as they relate to being a survivor, but being asked this question up front really made me realize how much these accomplishments mean and are worth.
When I asked her later, Rosalie told me that “I believe I have Super powers… [The show Smallvillle] reminds me of me and us sometimes, how it is really difficult to adjust to the new world after he was fallen out of the meteor shower. Don’t you guys just feel as if you were part of his life? How he was so young…It’s kind of like how society views on us in real life…”
I especially like Rosalie’s take because she recognizes that being superman doesn’t only involve super strength and x-ray vision; but also having to adjust to living in a world that wasn’t his own. He felt different from his peers. He struggled with knowing that if others found out about his secret, they might treat him differently. Being superman doesn’t just mean having super powers but it means doing the right thing with them, despite the many struggles being faced.
It can be difficult to find ways to achieve great things or to feel like you’re achieving great things when you feel so different from everyone around. Many times others don’t get why we struggle or understand the implications of certain long term effects.
It’s easy to get frustrated when those around seems to be moving at a different pace.
What all of this says to me, however, is that even though we often doubt ourselves, in reality we took our bad situations and turned them into dreams and goals, aspirations and achievements. Isn’t this the most powerful thing of all? After all, even Superman had to face his kryptonite in order to save the world.
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“There’s a radical—and wonderful—new idea here… that all children could and should be inventors of their own theories, critics of other people’s ideas, analyzers of evidence, and makers of their own personal marks on the world.”
– Deborah Meier, educator