Between Two Kingdoms by Suleika Jaouad
Date read: 3/7/23. Recommendation: 9/10.
A beautiful and inspiring memoir about Jaouad’s diagnosis with a rare form of leukemia in her early 20s and her struggle to survive. Four years later, she had survived. But she was then faced with the question of how she could possibly begin living again. So she borrowed a friend’s car, subleased her apartment, and set off on a 15,000-mile road trip over 100 days. Along the way she visited strangers who had written to her while she was sick in order to uncover her way back to herself. The book is full of thought-provoking sections on mortality, meaning, recovery, and how to reconcile our past with our present in order to find a path forward. Jaouad’s a brilliant writer and her story will steal your heart.
Check out my notes below or Amazon for details and reviews.
My Notes:
Moving to Paris and diagnosis:
“If Manhattan is where people move to jump-start careers, Paris is where they go to live out the fantasy of a different life.”
Itch (first symptom) had lessened since she moved to Paris, but the exhaustion was all consuming. She was drinking up to eight espressos a day. “I started to worry that my deep weariness might be something else. Maybe I just can’t cut it in the real world, I’d written in my journal.”
Found herself returning to the clinics dreary waiting room multiple times for various colds, bouts of bronchitis, UTI’s.
After her red blood cell count dropped significantly, she returned to the hospital in Paris, they stabilized her, then she flew back to the US where she was diagnosed with acute myeloid leukemia. An aggressive form of cancer that attacks the blood and bone marrow. Only 1 in 4 patients survived beyond five years past diagnosis. Suleika was 22 years old.
“The diagnosis had formed an irreparable fracture: my life before, and after.”
Treatment:
“How strange to be here, in this depressing room, I thought with incredulity, while my peers were out there, starting careers, having babies, traveling the world, and hitting all the other milestones of young adulthood.”
Isolation: Suleika was a year too old for pediatrics, but decades younger than most of the other patients in adult oncology.
One afternoon, after more than five weeks in the hospital, she was going into bone marrow failure. The standard treatments were not working. She was enrolled in a phase II experimental clinical trial, meaning it was not yet known whether the new chemo drug combination was safe and effective.
Planning for the future:
“With mortality in the balance, one of life’s most delicious activities when you’re young—imagining your future—had become a frightening, despair-inducing exercise.”
“Then I howled into my pillow—a deep, blood-vessel-popping howl of frustration and envy directed at Will, at my friends, at everyone else who was out there starting jobs, taking trips, discovering new things—all unencumbered by illness.”
Alchemize suffering into creative grist:
“Henri Matisse, while recovering from intestinal cancer, had worked on his design of the Chapel of the Rosary in Venice by pretending the ceiling of his apartment was the chapel, and attaching a paintbrush to a long pole, which allowed him to work from bed.”
Frida Kahlo, once a pre-medical student in Mexico City, was in a horrible accident when the bus collided with a streetcar. She suffered fractures of the clavicle, ribs, spine, elbow, pelvis, and leg. She was pierced by the streetcar’s iron handrail which entered her left hip. She was forced to abandon her plans of becoming a doctor. While she was bedridden, she stole oil paints from her father, ordered a special easel, and started to paint. “Kahlo transformed her confinement into a place incandescent with metaphor and meaning.”
“I decided to reimagine my survival as a creative act….If my body had grown so depleted that I now had only three functional hours each day, I would clarify my priorities and make the most of how I spent the time I had.”
Reorganized her bedroom so everything she needed was within reach—pens, notebooks, papers, bookshelves with her favorite novels, a wooden board to act as a desk while she laid in bed. “I wrote when I was home, and I wrote each day that I found myself back in the hospital. I wrote until the anger and envy and pain bled dry—until I could no longer hear the persistent beeping of monitors, the hiss of respirators, the alarms that constantly went off. I had no way of predicting all the place the Hundred-Day project would take me, but what I knew for now, was that I was starting to find my true power.”
Started a blog: the concept was to create a platform for young adults with cancer who were often misunderstood and overlooked. Eventually, the New York Times caught wind, read her blog, and reached out to her to write for the paper.
Prior to bone marrow transplant: “I worked around the clock for a month to draft thirteen columns before I entered the transplant unit, fueled by the knowledge that it was going to be a long time before I was well enough to write or walk or do much of anything else again….To this day, I’ve never been more prolific. Death can be a great motivator.”
“I worked furiously, eager to get as much as I could done before the side effects of the chemo intensified. Inevitably they did, so as I typed, I kept a yellow commit bucket tucked under one arm.”
Strangers started to write in as her column and blog gained traction. “Though I wasn’t allowed to leave my hospital room, writing had given me a portal through which I could travel across time, space, continents.”
“These strangers and their stories quickly became my conduits to the outside world. I relished the letters I received…”
“Before the transplant, writing had been a refuge for me; now it most often resulted in frustration and tears. But I was determined to do what I could while I could, even if that meant pushing my body beyond the boundaries of what was prudent.”
“Since the launch of ‘Life, Interrupted,’ it had been syndicated in magazines and newspapers and was gaining a sizable following. I didn’t have the stamina to write a new column each week, but I did keep writing, slowly, every day, even if it was only a paragraph.”
Mortality:
“We are all terminal patients on this earth—the mystery is not ‘if’ but ‘when’ death appears in the plot line.”
“Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Susan Sontag
Meaning:
Meaning is not found in the material realm—dinner, jazz, cocktails, conversation or whatever. Meaning is what’s left when everything else is stripped away.” Howard, a retired art historian from Ohio, who wrote into Suleika while she was sick.
“Grief is a ghost that visits without warning.”
Recovery:
“It’s where I find myself now, on the threshold between an old familiar state and an unknown future. Cancer no longer lives in my blood, but it lives on in other ways, dominating my identity, my relationships, my work, and my thoughts.”
“After three and a half years, I am officially done with cancer—more than four years, if you start with the itch. I thought I’d feel victorious when I reached this moment—I thought I’d want to celebrate. But instead, it feels like the beginning of a new kind of reckoning. I’ve spent the past fifteen hundred days working tirelessly toward a single goal—survival. And now that I’ve survived, I’m realizing I don’t know how to live.”
“Even acknowledging this schism feels impossible: I’ve already put my parents through so much, and I don’t want to worry them with the challenges I am facing now…But the contradictions leave me mired in unanswerable questions: Will my cancer return? What kind of job can I hold when I need to nap four hours in the middle of the day…?”
“During my time in treatment, I’d had one simple conviction: If I survive, it has to be for something. I don’t just want a life—I want a good life, an adventurous life, a meaningful one. Otherwise, what’s the point?”
“Recovering isn’t about salvaging the old at all. It’s about accepting that you must forsake a familiar self forever, in favor of one that is being newly born. It is an act of brute, terrifying discovery.”
“After you’ve had the ceiling cave in on you—whether through illness or some other catastrophe—you don’t assume structural stability. You must learn to live on fault lines.”
Travel:
“My time in India has given me a glimpse into how travel can hurtle you out of old ways of being and create conditions for new ones to emerge.”
Road trip: “It’s becoming clearer and clearer to me that I need to leave the familiar, but I don’t want to do it entirely alone—I want to seek out others who can offer perspective into my predicament, who can help guide my passage. By the time I finally pass my driver’s test, the next step is obvious: I am going to go on a road trip and visit those who sustained me when I was sick.”
Covered 15,000 miles, 33 states, visiting more than twenty people, over the course of 100 days—the maximum amount of time her medical agreed to before her next follow up.
“I am nothing like the girl who left home nearly fifty days ago. I am a sojourner, an adventurer, a road warrior, crushing the big miles, even if I still go to sleep shattered with exhaustion at the end of each day.”
When we travel we take three trips. The first is of preparation and anticipation. The second is the trip you’re actually on. The third is the trip you remember. The key is to be present wherever you are in your journey at this moment.
Threads of past, present, future:
“Maybe the challenge is to locate a thread that strings these selves together.”
“To be well now is to learn to accept whatever body and mind I currently have.”
“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. It is learning to embrace the people I love now instead of protecting against a future in which I am gutted by their loss.”