NO TRADING ALLOWED | Angela Rossetti

Elizabeth’s head was wrapped in gauze like an ancient, elegant, entombed Egyptian. Its size was double that of her normal head, tiny slits for her eyes peeking out, tubes in her nose, a mouth packed with sponges that appeared to be bloodying more by the minute, despite the drain. She was hooked up to a terrible-looking, noisy machine that was to be her hope of survival. The scene took our collective breaths away, and then we tried not to breathe too deeply as there was a dark fog that hung over our heads as we watched. Helpless.

It was 1978. Half a century ago. In surgical terms, comparatively primitive.

My sister had been deformed by a cruel disease, thalassemia, inherited from our long-ago ancestors because it had saved some of them from malaria. Saved them so they might live, might reproduce. Saved them so they might pass on a gene that had two sharp edges to it—one to vanquish malaria, one to slice through “normal” life and turn it into pain and deformity.

Elizabeth was 21. An adult who could and would make up her own mind about what she wanted and how to get it. While blowing out candles on her birthday cake, the first thing she silently decided was that she would change her face. Long before looksmaxxing, long before disembodied friendships that liked or unfriended you with a click, connection with others depended upon the body you lived in. How you looked. How you moved. Looks determined how, or if, you could connect to another at all.

When your face is deformed, you are relegated to loneliness. And if that loneliness is intense enough, you are driven to risk everything to end it.

So, Elizabeth started making plans for her escape from a life-limiting appearance to another visage that might be more pleasing. She wanted a cleaner image, one that did not cause people to look away, a face that might open the world to her. “I imagine I will look like Mother,” she said, as she already had Mother’s quietly disarming round eyes. But now she wanted them to reset in a beautified face. Early on, Elizabeth had learned to swallow tears, or at least silence them, as they slid down her widened cheeks, gliding past her different nose. Since grade school she had practiced the art of outreach—an ability to connect with others—first with empathic teachers, then with older friends, friends who had lived long enough to know that life was not perfect. But friends were still too few, and a romantic relationship seemed achingly impossible. She had worn the mask of the disease since childhood. At 21, it was time to strip it off. Trade for a different appearance.

She decided, against our parents’ wishes but in concert with mine, to undergo grueling plastic surgery to correct her face. The operation would be brutal, risky, painful. It would be done out of state, meaning even more loneliness. Being treated in an unfamiliar hospital in an unfamiliar environment. And that would only be the beginning of the lone journey. Alone in a cold operating room for extensive painful surgery with no guarantee of success. Or survival. No matter that her family would be with her, they would be outside the theatre. She alone would take the risk.

In preparation, Elizabeth met with physicians, sometimes alone, more often with me. Our parents, reluctant to put their daughter through anything that could cause harm as she was perfectly beautiful to them, managed to put their dread aside and channeled their misgivings into the energy needed to meet with some of the specialists. The new hematologist who would oversee her case. The esteemed plastic surgeon who would do the work. The cardiologists who would see to it that her heart could take the operative stress. And on and on in a circle of hope and frustration and fear, that sped up ever faster around hospitals and doctors. Against their reason that indicated this was too great a risk, but with deep love, our parents tightly clung to all of their hopes for Elizabeth—first that she would survive, then that she would look the way she wanted. They loved her as she was, but they knew she was desperate. She wanted a full life. She deserved a full life. They wanted her to have a chance to match her true internal beauty with her appearance.

Truth was her family was terrified.

Not Elizabeth.

Over the years, she had diminished physically but gained buoyancy of spirit, quivering beneath her gentle bravado. Repeated rejection had made her resilient. It had given her the courage to try dangerous surgery. Contemplating the promised result had allowed her to get past a horrid sounding act of facial reconstruction. Her imagined future elevated her spirit and pushed down her fear.

As each physician promised to knit Elizabeth together in magical new ways, our parents seemed to me more terrified than they had ever been. Now they were like sea creatures who had shed their protective shells, each was delicate now, sheltered only by thin hope, inspired by Elizabeth’s determination.

The surgery did not go as planned.

The hematologist and the cardiologist attended as vitals spiraled out of control. If the surgery did not stop, she would be lost. The surgeon did stop, but not until he had made the cuts and breaks that would cause intense pain and months of healing. Truncated effort. Surgical work that meant that pain would survive. So would her deformity.

The question was, would she?

Somewhere under the anesthesia, Elizabeth fought. Later, as we watched through the windows in the ICU, each of us was lost in personal despair. Our father, angry that he hadn’t forbade the whole thing. Our mother emotionally destroyed that she had abandoned her motherly duty to protect. My 26-year-old self, the elder sister who thought she knew more than she actually did, feeling regret. As we watched the scene, we were angry, remorseful, despairing.

We watched. Waited. Would the antibody storm cease? Would her heart be strong enough? Could her psyche cope with the painful result—a broken and stitched face that largely looked the same?

The next morning, she was still with us. Though numb with grief and fearful of what might be, we each spent as much time with Elizabeth by her bedside as the staff would allow.

She had physically survived. But the recovery would be long.

When the bandages came off, carefully cut by the surgeon, she asked for a mirror. I stood by her, wanting to take her place and be the one to endure the reveal. I wanted to take on what would turn out to be years of physical pain and despair. If I could only trade bodies, as they did in science fiction. Trading my guilt for her physical pain.

That was not to be.

Though devastated, Elizabeth knew she had no choice but to carry on. After a long hospital stay, return visits to the surgeon were brief. He simply had nothing to say, but "sorry it didn’t work." We later learned Elizabeth was only the second patient with her condition that he had operated on. The first had been a moderate success; he had been hoping for a greater success with my sister.

And though the clinical view was that it was a failure, my sister took another view. Yes, the surgery had failed. Now, she had more pain. She would lose months of her life to healing. But she believed she had no choice but to go forward.

Eventually, she went back to her work in the accounting department of a mid-sized police department, befriending the cops who depended on her for processing their overtime pay and admired her courage. For the next 26 years of her life, Elizabeth put her sweet voice to use singing in a community choir and facing the audience in the choir’s front row. She volunteered at a theatre, knowing how playwrights had the ability to see into the human soul. She worked in a flower shop and loved being surrounded by beauty.

She had her bedroom repainted and added a sunny yellow coverlet. She placed an artistic print of "The Road Not Taken" by Robert Frost in the room.

I have kept that print. It is the soul of my sister. And that has made all the difference.

Angela Rossetti is a bioethicist and adjunct faculty at Albert Einstein College of Medicine, where she teaches in the Montefiore Einstein Graduate Bioethics program. Her career was inspired by her family—and all families—with rare diseases, who struggle for healing and social acceptance. Previously, she worked in rare diseases and other categories in the pharmaceutical industry, bridging the gap between patients and industry. Her work has appeared in Med Page Today, Healthcare Business Today, the Sanford Bernstein Center for Ethics at Columbia University, the USA Network, the Aspen Center for Social Values and BMC Medical Ethics.