The doctors used to hold up a chart with various faces on it ranging from the typical smily face, which graced the fronts of my faux retro t-shirts, to a face green with pain. They wanted me to tell them which one I felt most like. Or they would ask me to describe the pain on a scale from 1 to 10. I would begin describing my experience. Bewildered, they’d always return to their charts or numbers. They didn’t understand I am a storyteller.
Reading and writing gave me a way to process and share all the paradoxes I’d lived through
Ever since my mom read to my brothers and me before bed, I’ve known great books will reveal secrets to those who are willing to seek them. I learned things from books that no one in my small conservative town was willing to discuss. Books taught me it was okay to be different by bring me into the thoughts of outcasts. I discovered that the nature of life is to be both beautiful and terrible – sometimes all at once. Reading and writing gave me a way to process and share all the paradoxes I’d lived through – the way wholeness can be found only after being broken, the intensity of each moment in the presence of death, and the bursts of joy in the midst of suffering.
At age fifteen, I was diagnosed with bone cancer. I spent a decade in and out of the oncology ward getting surgeries, chemotherapy, and scans. During all those years, I believed it was my role to be the positive and good patient. I almost died twice. I finally decided I would do anything to be well. My doctors told me there was nothing I could do. I did my own research. I slowly transitioned to a vegan, plant-strong diet. I started yoga. Five years later, I’ve now been cancer-free for the longest stretch since I was diagnosed. Part of me believes it wasn’t even the change of lifestyle but the sense of empowerment that helped me heal.
Questioning the authority figures in my health care led me to begin to question every aspect of how I’d been instructed to live. I questioned my own limiting ideas as well. After my amputation, I thought my dreams of becoming an actress were over. I already understood the harsh reality of auditioning. I didn’t think anyone would be able to see me as healthy, sexy, and whole ever again. On stage and in life, I did my best to “pass” as able-bodied. In fact, I did my best in life to “pass” for the person I thought everyone wanted me to be.
I so wanted to be normal – to be done with struggling and explaining to people all the things that made me different.
The hardest realization came when I admitted I’d be holding onto my husband out of the fear of never finding anyone who would love like he did. We’d started dating in high school and he had seen me at my sickest and stayed. I so wanted to be normal – to be done with struggling and explaining to people all the things that made me different. As terribly frightening and lonely as it was to hurt my best friend, I asked for a divorce and came out as gay. I began to listen to my body rather than seeing it as the enemy. In places where the world asked me to conform, I decided to create more flexibility and acceptance.
Now, I am just beginning to understand that what I took for some of my greatest weaknesses are actually my greatest strengths. There are stories I can tell. By not hiding and by not simply trying to be good, I can help people gain the courage to become more authentic. I’m not interested in being an inspiration. There is something about that word that allows people to put me away on a shelf. I prefer to stay very human. What I’ve been through can happen (or perhaps already has happened) to you in some manifestation or to someone you know and love. This is life. We’ve all felt different and inadequate.
I write because I’d like to be a voice.
I write because I’d like to be a voice – one voice in the chorus of many – sharing with you what this fragile, unexpected life is like. For me, there was always at least one voice, one book, one story calling to me and guiding me through the darkness. I am grateful for the bravery of others who shattered the silence and the illusion of “how things should be” so that I could find a little bit more truth and freedom. My hope is to give that same gift to you – a chance to question, space to be, and the support to take a bit of your power back. Maybe you’ll use it to change our world.