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Surviving Surviving

Life After Childhood Cancer

No one taught me how to be handicapped. How am I supposed to be something I was never taught to see? When I was a girl eating bologna sandwiches and watching the history channel instead of cartoons on Saturday mornings with my father, he told me I could be and do anything — well, except be a surgeon or fly a plane, as if those could ever be my only two limitations. I was raised to be and feel normal and think my handicap was just part of normal life, that there was no difference between me and someone who is not visually impaired. And that is one hell of a way to be. It really is. But my desire to be normal drove me to being embarrassed and even ashamed of my handicap to the point I would go to great lengths to hide it. The last thing you would ever hear me say was “I can’t see it.” No one showed me how to own it. No one understood the pain, anger, trauma, and isolation I feel about it. No one gets what it was like being a survivor. And survivor is such a bullshit term too for someone who still feels like a victim.

I am a cancer “survivor.”

I was born with the shit.

I was diagnosed with a rare form of hereditary childhood cancer that develops in the eyes known as Bilateral Retinoblastoma. Retinoblastoma is cancer in the retina, which is in the back of the eye. It is caused by a mutation in the Retinoblastoma (RB1) gene. Thus began my one-eyed journey.

This is the only life I have ever had. As in, I have never known what it was like to not be a cancer survivor. It’s such a part of me that when I tell my story, I give an overly rehearsed and emotionless account of frequently repeated details of the enucleation of my left eye, the twenty-one radiation treatments on the three tumors in the right eye, cataracts removal, and practically having my own permanent suite at the Emory Eye Clinic over three decades. I’m usually met with what I always assumed were obligatory oohs and ahs and praises of being amazing or an inspiration. I never understood the sincerity there. I never thought of myself as a survivor or inspiration or anything extraordinary. It never occurred to me how remarkable my story could be. Me? I’m just a girl who got a shitty hand in the game of genetic roulette.

Once I was old enough to remember and know what was happening, everything always seemed so normal. I did not understand until much later that not all children had MRIs, blood work, lights and drops in eyes, surgeries, and waiting rooms in their life. My family did such a great job normalizing me I can honestly say I was well into my twenties before I realized how different my childhood really was. Things like “annual cancer check-up” are not in my friends’ vocabulary. Trips to the Emory Eye Clinic are so routine that we have jokes about the notoriously long waiting time. "They're only two hours behind this time!" I would jokingly exclaim to my mother after check-in. But they are the best, so we go.

My very first memory was a dark and despairing place. I was 3- or 4-years-old and I was at one of my cancer checkups at Egleston’s Children Hospital, the one that had a sun and moon mural on the elevators in the parking garage. I was lying on an examining table surrounded by nurses and Dr. Sternberg. Dr. Sternberg was the leading physician in the field of Retinoblastoma and a pioneer of treatment in the 1980s. They would put me under anesthesia at that age to do examinations because they needed me to be still and I would fight the drops and lights in my eyes. I was calm, though. It was not my first time. There was something playing on a television screen in the background. I want to say it was Fraggle Rock. They put the mask over my face and asked me to count down from one hundred. When I told them I didn’t know how to count to one hundred, they all chuckled. I told them I could count to ten though and with a proud voice began at one.

That memory devastates me when I think about it. It’s just the first in a long line of exams and procedures. I’ve been put under more times than everyone I know combined. A friend once told me it is a beautiful memory — one of survival and strength. Perhaps she is right. But the fearlessness I felt as a child has dried up. That brave little girl couldn’t possibly be me. She knew nothing of the hurt and anger that would invade her thoughts, a poison spreading slowly over the years and then all at once. The poison burns through my veins and it is killing me.

Here I am, at this moment, a 29-year-old so-called cancer survivor who has never known how to be one or anything else. My mind is at a stalemate on that one because I’m still learning how to survive. The surviving did not stop after I beat the cancer twice. There is no pride or celebration from me or my family on that. There are no pretty ribbons on my family members’ cars. I don’t check visually impaired on important forms despite having one eye and low vision in it at that. It's been a dark road of discovery for me of pain and anger I tried to assuage with men and drugs and a life of constant instant gratification, as one does.

I hope these stories will bring me peace and the world knowledge. I hope you stick around for the journey.

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