Suleika Jaouad remembers the itch—an unrelenting, impossible-to-sleep kind of itch, like a million mosquitos feasting on her skin at once. Jaouad scratched day and night, blood oozing from her legs and arms. Next came the crippling exhaustion, constant colds and translucent skin. At age 22, she got her diagnosis: acute myeloid leukemia with a 35 percent chance of survival. She spent the next four years mostly in the hospital, struggling to survive and documenting her experiences in a popular column for The New York Times. When her doctors finally declared her cured, she left the hospital grateful but bewildered, having no clue how to exist in the world after all she had endured. She eventually embarked on a 100-day, 15,000-mile road trip to clear her head and visit several column readers who wrote to her while she was in the hospital. Jaouad chronicled her epic journey of self-discovery in Between Two Kingdoms: A Memoir of Life Interrupted, which I devoured this summer.
The book’s title comes from a Susan Sontag quote: “Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Specifically, Jaouad explores what it means to occupy a place of semi-wellness, where illness symptoms linger but no longer debilitate and life is lived scan by scan.
I sent a copy of this book to a dear friend living with stage four lung cancer. (For my friend it started with a numb pinky finger.) She’s 39 with four children ages six through 12 and her days are a dizzying blur of scans, doctors’ appointments and terrible side effects. No one can say for certain how much longer she has left.
Watching her exist in this gray space is brutal and frustrating. We all want definite answers and clear paths forward, but that’s not how life (or cancer) works. And maybe a return to normal life and optimal health are fruitless pursuits. “The idea of striving for some beautiful, perfect state of wellness? It mires us in eternal dissatisfaction, a goal forever out of reach,” Jaouad writes. “To be well now is to learn to accept whatever body and mind I currently have.” In our society, the idea of accepting—rather than fighting—one’s health limitations seems so radical. But perhaps it’s the best way through. For Jaouad, it’s the only way.
PS Short on time? Check out Jaouad’s TED Talk