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AN ABNORMAL LIFE
“An Abnormal Life” is the title of a teen survivor’s high school American Literature paper. He has been part of many of our discussions about disclosure (what you share and what you don’t share related to having a brain tumor). We talk about the fact some people will make assumptions about you based on your appearance including physical changes like poor balance. If it takes you a minute longer to analyze what is said, people may make assumptions about your intelligence. If your face does not portray the emotions you are feeling, people may make assumptions about your feelings or personality. So we work together to find what our strengths are and find ways to openly talk about challenges.
Every day the staff at CBTF talks to parents about the difficulties their children have at school. Sometimes it is the lack of understanding educators have about the cognitive impact of a brain tumor and its treatment. Sometimes it is about bullying because someone is different. Through support programs, the Family-2-Family program, information, advocacy and referrals to local groups, we hope to increase understanding. Each time people talk about the change in people around them or improved knowledge, you begin to believe the awareness and understanding about differences is improving.
Reading this from a teen’s perspective makes me realize how far we have to go. This young man talks about elementary school and knowing then that people treated him differently and were not honest to him. They made fun of him for walking funny, not being able to run fast enough and always picked him last for his lack of athletic ability. He says in order to cope with his feelings; he attended camps for others with cancer or brain tumors. It was there that he did not feel alone. While he says the other kids at camp were not super heroes, the one thing they gave him which no one else could was “hope”.
He talks being depressed in junior high and high school. He talks about trying to do many things to make himself happy, but always feeling like he was just taking up space. He says the thing that made him feel like he had found what he was looking for was attending the Teen Heads Up Conference with Children’s Brain Tumor Foundation and Camp Mak-a-Dream. He states that here, people looked at him like he “was a normal human being”.
He ends with “why are people prejudice against people with disabilities?” What a powerful question for a teenager who has survived a brain tumor, who has volunteered his time at dozens of events, and who reaches out to everyone around him, to ask? While we can’t control the opinions of everyone, we can keep listening to the powerful voices of our survivors to guide us in thinking before we make quick judgments.