Between Two Kingdoms

“I began taking uppers the way some people add an extra shot of espresso to their coffee—a means to an end, a way to stave off my deepening exhaustion. In my journal, I wrote: Stay afloat.”

Due to her self-blame, Suleika chooses to ignore her symptoms, and, instead, she self-medicates with cocaine and other uppers. Her self-admonition in the journal signals that she is a woman on the edge, wanting to persevere through a difficult last year of college and doing everything she can to survive in-tact. The severe measures that she takes emphasize the depth of her exhaustion, the impetuosity of youth, and the gravity of the illness she and everyone else refuse to take seriously.

“[M]y fever crept up and up until my body felt like it might combust. I started shivering. Rivulets of sweat pooled in the hollows of my collarbones, and I remember feeling fragile for the first time in my life. ‘It’s like I’m made of eggshells,’ I told him again and again. […] Will grew concerned and suggested we go to the emergency room. ‘Let me take care of you,’ he said.”

During their trip to Amsterdam, Will and Suleika take mushrooms. Suleika’s body reacts to the drug-induced trip, and Will’s willingness to take care of her foreshadows their future relationship: Will’s too-willing devotion and Suleika’s denial of his needs. The references to fire echo the ways chemotherapy will burn through her body, and her repetition and sense of fragility suggest that she will encounter mortality soon.

“We undressed and had sex in my childhood bedroom with its pink walls and posters, careful not to wake up my parents in the room next door. Afterward, Will began to weep. ‘A lot of bad things are about to happen,’ he said. ‘We need to put our relationship into a box and to protect it with everything we have.’”

Suleika and Will’s youth, freedom, and love are reflected in the setting of “pink walls and posters.” The diction used in the sentence, particularly the word “undressed,” does not indicate emotion, simply conveying the animal activity of bodies and the youthful setting juxtaposed against the seriousness and unknowns of Suleika’s leukemia. Their love feels urgent and yet muted through the mention of her parents in the next room. Will’s tears and words are prescient, and his determination to build walls around them shows his desire to care for the relationship, love Suleika, and survive the illness together.

“Up until this point the extent of my knowledge about bone marrow came from French cuisine—boeuf a la moelle, the fancy dish occasionally served with a side of toasted baguette. Dr. Holland explained that the marrow, an organ at the very core of the body, was a living, sponge-like tissue that filled almost every bone.”

Bone marrow represents life to Suleika. Her naivete about marrow and its purpose in her body signals that she will have a large learning curve. While she has a lot to learn, Dr. Holland represents those who will display kindness and care for her in her journey. Suleika’s lack of knowledge also highlights the paradox of mortality and youth. The inner workings of the body are not even in her vocabulary. That she must now learn is a tragedy of her unexpected severe illness.

“Although I wasn’t planning for a baby anytime soon, preserving my ability to have one felt like my only lifeline to an uncertain future.”

Suleika is 22, so young as to not have considered whether she wants children. Her cancer threatens to take every dream that she might have even if she survives. The effort to preserve her eggs represents a desire to preserve her future, any future, of family and life beyond leukemia. The eggs represent a small hold on certainty when every part of her life has begun to unravel.

“Up until this moment, with the exception of the mouth sores, my illness had been largely invisible. On some level, I was starting to realize that the life I’d had before was shattered—the person I’d been, buried. I would never be the same.”

This moment denotes the shift in Suleika. Her appearance is now marked by illness, and people’s demeanor toward her change as a result. Who she was before her diagnosis cannot be recovered. This is the first sign that she separates herself into distinct periods: before-diagnosis and after-diagnosis. The duality in her character signifies the disillusionment and eventual growth throughout her treatment and foreshadows the next break within her and its effects after her treatment ends.

“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. The future had once seemed infinite with possibility.”

Mortality forces Suleika to relinquish her dreams and live in the day-to-day regiment of treatments. A practice that once felt comforting and essential now plagues and haunts her, reminding her that the life she lived before no longer exists. She realizes that to recover a sense of herself she will have to create new ways of being with her thoughts and her body.

“I decided to return to what I had always leaned on in difficult times: keeping a journal. I promised myself that, no matter how sick or exhausted I felt, I would try to jot something down every day, even if it was nothing more than a sentence”

The 100-day project introduces creativity and a means of sense-making among the chaos and uncertainties of her life. Suleika’s return to journaling signals an end to the shock of her diagnosis. The project focuses her and gives her a sense of purpose and meaning. Journaling represents one of the few practices that Suleika can do from her pre-diagnosis self through treatment and afterward. Through writing and sharing words, she finds a way to bare the suffering and puncture the isolation and loneliness of living with illness.

“Could these masterpieces ever have been painted by someone who was well? […] Could they have been created by someone who hadn’t been forced to confront the terrible fragility of the human body? I wasn’t sure.”

Art and writing allow Suleika to persevere during a time of overwhelming uncertainty. Reflecting on Frida Kahlo’s art and life, Suleika wonders about the essentiality of suffering to her art. This foreshadows her work as a writer and how inextricable her art will be from her illness. Throughout her illness, historical figures as well as her friends will inspire Suleika to give something back to the world despite her limitations.

“My mortality shadowed each breath, each step that I took, more present now than it had ever been. A manic energy hummed through me. 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. What would you write about if you knew you might die soon?”

Suleika’s productivity during the period before her transplant stems from her desire to defy the limits on her body and make a difference through her words. Mortality looms over her, and all Suleika can know is that the days ahead are uncertain. This looming uncertainty pushes her to an urgency that she’s never experienced.

“There we were, two complete strangers, arms extending from our screens, wrapping each other in an intimate embrace.”

Suleika and Johnny’s messages defy the boundaries of space and hospital rules for their treatments. Their communication represents the multitudinous messages, emails, and letters that Suleika receives from her column. The isolation required for the bone marrow transplant keeps her in the Bubble, but her words and the communications that grow out of those columns bring her intimacy and kindness when she needs it most. The hilarity and tenderness of their conversation contrast with the severity and isolation of treatment.

“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.”

Writing once comforted Suleika, but illness changes her abilities, even stealing the activities that she loves. Her attitude, though, is to take advantage of the time that she has, and just like when she was in college, she throws herself into a goal regardless of the needs and demands of her body. This demonstrates her drive for survival and persistence toward reaching a goal while also signifying her response to the fear of mortality and death.

“I felt two competing emotions duking it out in my heart: I hate you, I need you.”

Suleika’s two reactions to Will represent the split within herself and in their relationship. They both inhabit multiple roles, complicating and splintering their care for each other. Suleika’s need for Will as a caretaker wearies them both, but neither can see a way to unravel the illness from their relationship.

“Home is an elusive concept for people like me. By the time I was twelve, I’d attended six schools on three different continents. From seventh grade onward, we’d stayed put in Saratoga, for the most part, but I never grew to feel like I was from there, or anywhere else for that matter.”

Suleika’s identity overlaps several continents and languages. Her ability to make a home in and across multiple places foreshadows that she will be able to inhabit the unknowns of illness. The skills that she formed during those years of moving and travel teach her to exist in between the kingdoms of the sick and the well.

“I understood the protocols, spoke fluent medicalese, and could navigate the complex web of hallways with my eyes closed. It was the outside world that had grown foreign, even a little frightening.”

Illness cultivated fear in Suleika, fear of the outside and even a distrust of her own body. When she and Will move into the East Village apartment, Suleika relishes the freedom but acknowledges that it is another form of aloneness and alienation from Will and her family. The freedom also teaches Suleika the ways that she has grown in confidence, but her ability to navigate the medical language and system is itself a tragic milestone, a recognition that she has spent too long in the kingdom of the sick.

“Everyone who is born holds dual citizenship, in the kingdom of the well and in 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.”

This is a quote from Susan Sontag’s Illness as Metaphor (1978), and this text reminds Suleika that no one escapes mortality or the suffering of illness. All humans, at some point in their lives, must yield to death. This fact heartens Suleika and helps her make sense of her relationship with health. For Sontag, the sick and the well are distinct lands, but as Suleika knows well as a child of immigrants, belonging is never as simple as a passport. Home can be multiple places and no place all at once. This experience of home applies to her theory of sickness as well.

“As we undress, I feel exposed and insecure. [...] I’ve lost nearly twenty pounds from the recent bouts of C. diff, and my ribs protrude through thin flesh. Bruises and needle marks from IV lines, injections, and blood draws cover my arms. Scars whorl my neck and chest from the multiple central venous catheters I’ve had over the years. And my port: I still have that, too.”

Suleika divides herself into three distinct periods during the book: pre-diagnosis, post-diagnosis, and post-treatment. Her body after cancer treatments is scared and storied by years of medical interventions, and she fears what Jon will think of this on their first night together. The newness of her body and the vulnerability of the moment heightens her fear and insecurity. She wonders not just if he will accept her, but if she can accept this new version of herself.

“Moving on. It’s a phrase I obsess over: what it means, what it doesn’t, how to do it for real. It seemed so easy at first, too easy, and it’s starting to dawn on me that moving on is a myth—a lie you sell yourself on when your life has become unendurable. It’s the delusion that you can build a barricade between yourself and your past—that you can ignore your pain, that you can bury your great love with a new relationship, that you are among the lucky who get to skip over the hard work of grieving and healing and rebuilding—and that all this, when it catches up to you, won’t come for blood.”

“Moving on” is Will’s phrase for the space he needs to heal. Suleika meditates on this phrase and realizes that what he calls moving on is another in-between space, one that never fully ends, just like illness. Grieving, healing, and rebuilding cannot happen if she denies or wills the past away. Suleika sees that she must open herself to the joy and the pain of her relationship with Will to be open to any relationship in the future.

“My port has been removed but it’s not gone. It’s new kind of presence, a realization of all the other imprints of illness with which I have yet to contend.”

Before the port is removed, Suleika believes that when she gets it removed, she will be free of illness. She is surprised to find that despite its physical absence she can’t pretend that it was never there. Cancer, no matter how much distance she has from it, will always be a part of her story. Suleika has yet to sort through the array of emotions associated with cancer, but its presence will haunt her until she does.

“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? […] As I walk home, it becomes clear: I cannot continue on like this. Something—or maybe everything—must change.”

This moment of realization comes after an acquaintance tells her that death is the last resort. She sees how far she is from who she wants to be, and this inspires her to find purpose after her illness. During her treatment, survival was Suleika’s goal, but now that she has survived her illness, she feels pressure to make her life matter not only for herself but for her friends who have died from their illnesses.

“We will go where the letters take us and see what we find.”

Suleika uses the letters from readers of her column to map her trip around the country. Her trip is a map of connection and loss, survival and healing. The words that she shared connected her to the people who, in turn, teach her what she needs to heal and reenter the land of the well.

“I’ve been living so long in the constricted world of illness that it’s not just the safety of my body I don’t trust but that of the larger world too. It’s hard to know what reasonable fear is—what you can and can’t trust.”

Illness split Suleika’s life into a before and after, and this split leads to a feeling of betrayal by her body and a fear of the larger world. Suleika no longer has certainty or clarity about what and who is safe, nor how to navigate a world post-illness. This quote reflects the ways that illness haunts her daily routines even after the end of the treatment.

“I can’t know if there is a rogue cancer cell lurking somewhere in my marrow. I can’t predict if my body will scuttle commitments to myself or to others. I’m not even sure I want to settle down in a stable, more conventional way. But I’m beginning to understand this: We never know. Life is a foray into mystery.”

Jaouad brings together multiple types of uncertainty. This quote represents the ways that Suleika lives with uncertainty in her body and about her future. She fears the recurrence of illness, but her ability to move forward without certainty demonstrates how her character has grown to accommodate uncertainty.