I remember a Zen story about a woman who wanted to become a nun but was told she was too beautiful. She persisted, but the abbot of the monastery wouldn’t relent. Her desire to study Zen and to take Buddhist vows were so strong that she took hot coals from the fire and burned her face so badly that she was disfigured. Only then did the abbot let her in.
For many years, I have been living with a medical condition that has required numerous surgeries and has irrevocably changed the way I look.
In my own life, this issue resonates. For many years, I have been living with a medical condition that has required numerous surgeries and has irrevocably changed the way I look. Three times now, I have had an abdominal tumor that has permanently disfigured my abdomen. Until I was finally diagnosed, which took nearly 13 years, I was mistaken for pregnant (painfully ironic since, on account of this illness, I ended up having no children) or seen as lazy and fat. Doctors put me on agonizing diets that never worked. “You need to try harder,” they would say, as if they suspected I was secretly eating ice cream night and day. I felt frustrated and ugly.
And then the cancer was diagnosed. Liposarcoma. It had invaded my entire abdominal cavity. What then unfolded was more than a decade of surgeries and learning to live with a postsurgical abdomen that was weak, permanently swollen, scarred, and herniated—an abdomen that went against any image of beauty from my Los Angeles upbringing.
After my first surgery when I was finally diagnosed at the age of 35, a friend told me about Autobiography of a Face, a memoir by Lucy Grealy. “Whatever you are dealing with,” the friend explained, “Grealy had it worse.”
After my first surgery when I was finally diagnosed at the age of 35, my abdomen had an ugly red keloid scar and looked weird and swollen. I will never look normal, let alone beautiful, I thought to myself and complained to a friend. The friend told me about Autobiography of a Face, a memoir by Lucy Grealy. “Whatever you are dealing with,” the friend explained, “Grealy had it worse.” She lost a huge part of her jaw to childhood cancer, then went though terrible chemotherapy and many painful surgeries to reconstruct her face. My friend gave me Grealy’s book, but for a long time I wouldn’t read it. The book’s existence itself made me feel worse—as if I were now part of a club of mutants who would never be deemed beautiful and would have to turn to writing or some other way of making something beautiful of our suffering.
I have often asked myself whether, if there were a surgery that could make my abdomen appear normal again, I would undergo the pain and risk surgery always poses and consider it the price of beauty—or if not beauty, then at least the price of being less disfigured.
All her life since her childhood cancer, Grealy underwent surgeries to try to repair her face. Her appearance mattered to her; she was unable to let that go. I have often asked myself whether, if there were a surgery that could make my abdomen appear normal again, I would undergo the pain and risk surgery always poses and consider it the price of beauty—or if not beauty, then at least the price of being less disfigured. Sometimes I think I would. Ultimately, for Grealy, those surgeries weren’t entirely successful and did not give her the results she had hoped for. Her death leaves a sadness, a yearning, and lots of questions for her close friend Ann Patchett, who writes about Grealy in her own book, Truth & Beauty: A Friendship.
For now though, the question of reconstructive surgery in my own case is merely academic. There is no surgery to offer, and thus the hernia that my doctor feels is unsafe to repair only gets bigger and I am forced to live with this disability and disfigurement. In moments of low self-esteem, I find myself thinking that if the cancer does return, my doctor will have to perform surgery anyway and will then have a reason to take a risk and fix the hernia at the same time. That recurring thought becomes an odd sort of comfort.
But, as all do who have endured cancer, I keep hoping the sarcoma will never return. And on good days, I remember that my disfigured abdomen is a battle scar of my strength and survival—and, in that way, its own form of beauty.
The Buddhist idea of beauty is that it’s fine. Appears in line with causes and conditions, and then fades away. Through meditation you can see beauty as an aspect of a constantly changing universe, and yourself as part of it. When you can learn to take away your self-identification, and realize there is no permanent you to worry about, you can throw away your ideas of beautiful. All of it is just full of suffering. Throw it all away.
Thank you for sharing your Courage! There are few of us who can “write” those honest words in the midst of our battle to understand our own life when it wants to run from our bodies…..only in letting go of what was before the illness, and in recognizing my standard of well being may never reach that level again, can I look at where I’ve come from in this illness as my new standard of “gratitude” for this day!