At age 22 Suleika Jaouad learned she had leukemia and a 35 percent chance of survival.
Much of the book details the four years of round after round of chemo, a clinical trial, and a bone marrow transplant, and near-death reckonings –written clearly and beautifully. This is all important, but what really moved me in this book was the honest revelations about herself, a young woman going through such crushing pain and uncertainty, and about her needs and desires, met and unmet.
I bent over the sink and splashed my face with cold water and looked in the mirror. I looked terrible–because I was horrible, I thought, with a nauseating swell of shame. Along with the chemo, an ugliness was coursing through my veins. Small violences. Swallowed resentment. Buried humiliations. Displaced fury. And a marrow-deep weariness at a situation that dragged on…p. 162
When her medical team declares her cured, she learns the healing needs to begin. Jaouad quotes Susan Sontag in her book Illness as Metaphor, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” In part healing means navigating from the kingdom of the sick to the kingdom of the well and to honor that she embarks on a pilgrimage, a 100 day road trip. In response to the column she wrote for the New York Times about being so young and having cancer, many people wrote to her about their own stories, and she decides to visit some of them, including a man on Death Row in Texas.
He understands what it feels like to feel stuck in purgatory, awaiting the news of your fate; the loneliness and claustrophobia of being confined to a small room for endless stretches of time; how it’s necessary to get inventive in order to keep yourself sane. These unexpected parallels are what initially compelled him to write to me, “You’ve fled death in your own personal prison just like I continue to face death in mine…At the end of the day death is death, doesn’t matter the form it takes.”p. 338
Throughout those long years her family was there for her completely. As was her boyfriend–until he wasn’t. Caretaking is not easy, especially when you are just starting out in your own life. Jaouad shares all the ways he sacrificed for her and expressed his love, and she is deeply grateful, but ultimately, the reality of her needs was too much. A certain bitterness remains and more healing needs to occur beyond the last page of the book.
Healing is figuring out how to coexist with the pain that will always live inside of you, without pretending it isn’t there or allowing it to hijack your day. It is learning to confront ghosts and to carry what lingers.p. 312
Fun Fact: Jaouad recently married the gifted musician, Jon Batiste.
My copy of the book is feathered with tabs, and I could have marked many more memorable passages. I am grateful for the wisdom and openness found on these pages, and offer a prayer that her cancer days are over forever and that healing continues in her life.
What have you read recently that encouraged your own healing? I would love to know.