Autobiography of a Face: Ewing sarcoma and its aftermath

This page is for readers thinking about Lucy Grealy's memoir Autobiography of a Face, especially survivors of childhood cancer and their families. It describes the book, where it is strongest, and how its 1970s medicine compares with care today.

Lucy Grealy was nine when she was hit in the face during a game at school. The pain did not settle. Months later she was told she had Ewing sarcoma in her jaw. Part of the jawbone was removed.

She survived. That is the first third of the book, and it is the part most readers expect the whole book to be.

The rest is about a face. Grealy spent her teens and twenties in and out of hospital for reconstructive surgery, one operation after another. Each one promised to make her look ordinary. Each one fell short. She counts them. She describes waiting rooms, grafts that failed, bone that reabsorbed, and the strange administrative optimism of surgeons.

What makes the book unusual is where it puts its attention. Cancer is the event. Being looked at is the subject. Grealy writes about school corridors, about boys, about strangers on the street, about the particular arithmetic of deciding whether to go to a party. She is unsparing about her own coping, including the years she spent believing that a successful operation would fix her life.

Spoilers, and a plain fact stated early. Grealy died in December 2002, at thirty-nine, of a heroin overdose, after years of dependence. The book was published in 1994 and does not know that ending. Her friend Ann Patchett wrote a separate memoir about the friendship afterwards. Grealy's death is not a twist and this page does not treat it as one.

The memoir runs to roughly 220 pages and moves in rough chronology rather than in numbered parts.

The early chapters cover the injury, the misdiagnosis, the biopsy and the surgery. Then two and a half years of chemotherapy and radiation, seen from a child's height. The smell of the ward, the ritual of vomiting, the way adults spoke over her head. And the pride she took in being brave, because bravery was the one thing being asked of her.

The middle chapters are about return. School, and the discovery that surviving is not the same as being restored. This is where the book's famous material sits: the cafeteria, the nicknames, the way she learned to angle her head.

The later chapters follow the reconstruction years into her twenties. There is surgery in Scotland, hospital friendships, and a stretch of hard drinking. There is also the slow arrival of a different question than the one she started with: not "how do I look?" but "who am I when nobody is looking?"

There is no medical appendix, no glossary, no resource list. It is literature, not a guide.

It is one of the few cancer memoirs written from inside childhood rather than remembered from a great distance with the edges smoothed off.

It is precise about the social machinery of illness. The relatives who need her to be inspiring. The teacher who over-corrects. The friend who says the wrong thing and is then unforgivable, unfairly.

It refuses the redemption arc. Grealy does not arrive at acceptance in a final chapter. She arrives somewhere more honest and less tidy, and she says outright that the wish for a face that draws no attention was itself the trap.

It also captures something federal guidance states flatly but cannot make vivid: that childhood cancer treatment does not end when treatment ends. NCI defines late effects as health problems that show up months or years after treatment has ended. It says they can affect:

• organs, tissues and body function
• growth and development
• mood, feelings and actions
• thinking, learning and memory
• social and psychological adjustment

It also includes a raised risk of a second cancer. Grealy's jaw is one line of that list, lived out over twenty years.

It is also a rare account of medical pain treated as ordinary. Grealy describes years of procedures and recovery in which pain was simply the weather, and she is clear about how much of her childhood was organized around enduring it quietly. That framing helps explain why survivorship for her never had a finish line.

The treatment is 1970s treatment. Grealy's chemotherapy and radiation were given decades ago. The way her outlook was discussed around her rather than with her. None of that describes a children's cancer center now. Current treatment, as NCI describes it, is set out further down this page. Nothing in the book should be read as a picture of what a child faces today.

The reconstruction is also dated, and her repeated failures are not a forecast for anyone else. Ask a child's surgical team what is planned for them.

The opioid thread deserves care. The book does not discuss addiction. Her dependence developed later, and it is documented outside the memoir. Reading it backwards, as if the book were secretly about drugs, misrepresents what is on the page.

Finally, the book is about facial difference at least as much as about cancer. A reader who wants to understand a sarcoma diagnosis will find the medical content thin. For that, Ewing sarcoma covers the disease itself.

NCI describes Ewing sarcoma as a cancer that forms from a particular kind of cell in bone or in the soft tissue around it. It occurs in the bones of the legs, arms, feet, hands, chest, pelvis, spine or skull, and in nearby soft tissue. It is most common in adolescents and young adults, from the teens through the mid-twenties, which makes Grealy's diagnosis at nine early but not unheard of.

Standard treatment, as NCI sets it out, is not a single thing. Systemic combination chemotherapy is often given first, to shrink the tumor before surgery or radiation. Surgery removes what remains. Radiation is used where surgery is not possible or where it would cost too much function. Chemotherapy usually carries on for six to twelve months. Stem cell transplant after high-dose chemotherapy has a place in some localized and recurrent disease. Care is coordinated by teams that specialize in childhood cancers.

That sequencing is worth noticing against the book. Grealy's account of losing a third of her jaw reads as a single catastrophic decision. NCI says chemotherapy is often given first to shrink the tumor before surgery or radiation. What has not changed is the trade-off itself: sarcoma surgery in the head, the pelvis or a limb often means choosing between disease control and function or appearance. Limb loss and amputation after sarcoma covers the same trade-off in a different part of the body.

NCI groups the things that raise the risk of late effects into three sets:

• The cancer itself, and the organs it involved.
• The treatment: radiation dose and site, the chemotherapy drugs and their doses, the type of surgery, and whether several treatments were combined.
• The person: sex, age at diagnosis, other health conditions, and genetics.

Grealy's case sits squarely in the higher-risk pattern of that list. Radiation to the head and neck at nine, chemotherapy, and surgery on growing bone.

NCI's stated approach to this is not vigilance in the abstract. It says childhood cancer survivors should have yearly exams by a professional trained to spot late effects. It says follow-up should include watching for symptoms, and health education. And it says the plan depends on what treatment was given.

For adults finishing treatment, NCI's follow-up care guidance describes the same shape of plan. Check-ups are often every three to four months for the first two to three years, then once or twice a year. There is also a written survivorship care plan. It sums up the treatment given, along with signs and symptoms to watch for. The plan is meant to travel with the person, because the specialist who gave the treatment is usually not the clinician seeing them twenty years later.

That handover is the part Grealy's era did badly and the part that has changed most. Childhood cancer survivorship sets out what long-term follow-up covers, and late effects of childhood cancer treatment goes through them system by system.

It suits adult survivors of childhood cancer. It suits anyone whose body or face was changed for good, and who has never seen that written about without a moral attached.

It suits parents who want to understand what a child registers and does not say, and clinicians who want the patient's-eye view of a ward round.

It does not suit a reader looking for practical guidance on sarcoma, on reconstruction options, or on what to expect from treatment now. It is not a handbook and does not pretend to be. It also may not suit someone in the middle of treatment who needs hope more than accuracy this week. The loneliness in these pages is real and it lasts. There is no need to read it on any set schedule.

• NCI — Ewing Sarcoma Treatment (PDQ), Patient Version
• NCI — Late Effects of Treatment for Childhood Cancer (PDQ), Patient Version
• NCI — Follow-Up Care After Cancer Treatment
• Autobiography of a Face — catalog record, 1994 Houghton Mifflin edition

This page discusses Autobiography of a Face for education. It is not medical advice, and nothing here is a judgment of anyone's real medical care.