At HDS MEDALLION® we want to devote this week’s blog to an amazing young woman named Sarah Funes who penned this letter to include with her application to the University of California. Sarah won one of our mobility device bags at the Abilites Expo and attached it to her Segway. We also provided her with some damask material so she could cover her leg brace. Her courage and determination are an inspiration to all of us.
“When I was 10, I grew up in five seconds, the time it took the doctor to tell me, “You have a brain tumor.” The MRI showed a vast white blemish, celestial and cerebral.
I had been getting headaches for two and half years, but they blamed them on the stress from bullying and my parents’ divorce. We never ate dinner together at home. I didn’t learn to read until after a psychological test ordered by the judge during the divorce happened to show that I am dyslexic. At my Catholic school, the other kids taunted me for my curly hair, a mark of my Latin American heritage. I would lie on the bench next to the main office and pray that God would end my life.
I missed my brother’s First Holy Communion because I was in surgery, the morning after the MRI. They did a biopsy on what they discovered was an astrocytoma. When I woke up, I found that I couldn’t walk normally. Within a month, I was fitted with a brace. When they strapped me in, I felt that my life was over. I was lost. There was no part of myself that I thought was still me.
For the next few years, I went through medical hell. I still have two shunts in my brain, and I have a scar over my heart from the portacath that they used to deliver my chemotherapy. The resection took eighteen hours; the tumor was so large that you couldn’t close a fist around it. Two weeks after, I was having ninety seizures a minute, so they chemically induced a coma from which I awoke after a week. If God came to me in my dreams, he must be made of pink clouds. After that, I lived for four months in the hospital’s physical rehab. It was so lonely that I would call for the nurses just so that they would come and talk to me.
From the time they did the resection, my left side has been completely paralyzed. My one-sided smile had once been my signature as a child actress, on my way to becoming a child star; now it has become a symptom, symbolic of my star-shaped curse. I have no left peripheral vision in either of my eyes. I limped around for eight years before the pain became too severe not to use a mobility device. Every day, I open zippers and tie up my hair with just my right hand; in effect, I’m one-handed. I have ongoing tendon transfer surgeries in an attempt to get my left hand to open again.
It’s a humbling experience, to say the least, when you realize you have to start over. I couldn’t give up—I was too young, and I was lucky to be alive. But, I was angry. I was so, insufferably angry, and no intravenous drip could treat that.
Then, I discovered activism. In high school, I attended a forum where, for the first time in my life, I was surrounded by others with disabilities—congenital and acquired, physical and cognitive—and it was wonderful because we raised our voices together. Here, I belonged, in a way I never had at school or even at home. I channeled my anger into disability rights work until it wasn’t anger any more. I didn’t choose my disabilities, but I see now that I can choose my outlook.
When what you have is taken away from you, you learn how to make the most of what’s left. My disability has given me motivation to seize opportunities, one of which is the constant chance to prove wrong the people who say that I can’t do something. As I began to find myself, I went from being a failing student in high school to an honor student in college. I don’t take life for granted, and I don’t feel sorry for myself anymore.
My diagnosis changed my life; I see now that it saved it. My experiences have taught me that I don’t have to be the victim. I can find my own belonging.”