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.

All over Zen literature, people are cutting off fingers and limbs to show their desire to practice “the way,” but this story about a woman who had to mar her own beauty to get permission to take her vows especially disturbs me. It makes me think about the nature of beauty and of self-image.

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.

In my dance classes as a teen before this illness began, I was of normal weight but was told that I had to lose 15 or 20 pounds so I could look more willowy. Girls in my class were starving themselves. I went on crazy diets, too. And though I lost weight, I never achieved the image of beauty I had in my head and saw on the cover of every glossy magazine I read while lounging by the pools of my childhood friends. I felt ugly in my bathing suit, a one-piece—I didn’t dare wear a bikini.

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 had a cancer that was made of fat. It was as if all those voices about fat not being beautiful had turned into a tumor that was trying to kill me, as if my own self-image had become toxic. I felt ugly even describing my cancer, which seemed less presentable, less beautiful, than other cancers. With my self-image at an all-time low, I finally read Grealy’s book. That she tried to make something of her life with bravery and humor despite her illness and disfigurement moved me, and I loved her honesty in writing about her suffering and saw there was something I could learn from her experience.

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.