Between Two Kingdoms

Suleika’s immediate family includes her mother, Anne, her father, Hédi, and her brother, Adam. Anne grew up in Switzerland and moved to New York City during the 1980s to become a painter. Anne started a language school, worked as a house painter, and sold flowers to make enough money to live in her shared apartment. Eventually, she was able to buy her apartment in the East Village. Five years after she arrived in the US, Anne and Hédi met and began their courtship in New York, bonding over their shared bohemian values. During their courtship, he and Anne spent “what money they had on good wine, theater tickets, and travel, but they squabbled often, both of them too stubborn and independent for their own good” (37). Hédi is nearly 10 years Anne’s senior, and he moved to the US to teach at an international high school. Later, he became a tenured professor at Skidmore College, moving the family more permanently to Saratoga Springs. When Anne discovered she was pregnant with Suleika, the two decided to have a civil ceremony, but neither of them needed a legal document to solidify their relationship. Their life of nomadism, creativity, and independence became instilled in their children as well.

Adam is a junior at Skidmore the year that Suleika is diagnosed with leukemia. He is studying in Argentina at the time and finds out about her diagnosis over Skype. He takes a leave of absence from the program to return home. Adam undergoes tests to see if he would be a suitable match for a bone marrow transplant, and he is a perfect match. As a junior in college, he is asked to fulfill the hopes of Suleika’s transplant success. He is playful, every morning greeting his sister, “Salut, Suleikemia.” These expectations give him a heavy responsibility and result in anxiety. Both parents want what is best for their children, but with Suleika’s life in the balance, they hover over Adam, checking in on his health and life choices more than they might have before. They all lean on Adam for support, but their worry for Suleika transfers to him.

Jaouad describes Will as “part jock, part intellectual, part class clown—and could dunk a basketball just as effortlessly as he could recite verses of W. B. Yeats’s poems” (20). He is thoughtful and makes everyone feel at ease. He is five years older than Suleika. She writes, “He had a quiet, unassuming wisdom and playfulness of spirit that made him seem both far older and younger than his age” (20). Will conveys a spirit of adventure in living in a new country and starting a new relationship. This mirrors Suleika’s family’s values and immediately attracts her.

Despite their quick decision to move in together, Will proves himself a faithful, loving, and kind partner to Suleika from the first sign of her symptoms in Amsterdam. Later, when they moved to Anne’s old apartment in the East Village, Will becomes a caregiver, nurse, and primary household caretaker (143). He was tasked with the role of boyfriend, caregiver, and normal twentysomething trying to figure out who he was and what he wanted to do with his life. The pressure to fill these roles smothers Will and his needs. He becomes overwhelmed, buckling under the weight of his responsibilities. Jaouad observes, “He never said it outright, but it was clear that he was getting fed up with the limitations and demands my health placed on us” (160).

For Will, trying to figure out what he needed became a drawn-out process of needing space and attempting to provide support to Suleika. Suleika and Will become entrenched in their stories about their relationship. Will’s story “I need a break” (184) and Suleika’s “Why are you so distant” (184) pull them apart. They are unable to find a way to navigate the messy layers of roles, changes in their bodies, and mounting grief.

The medical staff in charge of Suleika’s care spans from her time in Paris until her final days at Sloan Kettering Hospital. During her first hospital stay in Paris’s American hospital, a doctor sees her age and declines to give her a bone marrow biopsy. Suleika’s childhood pediatrician is a figure that evokes comfort. Dr. Holland, Suleika’s first chemotherapy doctor, speaks to her family with care and lays out what the treatments will entail. Dr. Holland is in his eighties and works at Mt. Sinai Hospital. He is one of the founders of modern chemotherapy. With a team of doctors, he oversees Suleika’s care. Suleika feels grateful for the support of the medical team, but there are times when they fail to inform her about side effects, particularly infertility and early menopause. Suleika trusts the doctors and their advice, but she has had too many doctors fail to offer what she needs. She wants to know everything about her treatments and condition and be her own advocate.

Younique is a nurse whom Suleika meets during her first chemotherapy treatment at Mt. Sinai. She tells Suleika, “Anything you need, just ring the call button” (68). Younique will administer chemotherapy drugs, anticipating Suleika’s needs and checking in with her throughout her treatments. Younique gives Suleika the news that Dennis and Yehya died. Younique celebrates with Suleika “like girlfriends reuniting after a long spell apart,” when they see each other during her second treatment (89). She asks Suleika about her personal life, celebrates with her, and comforts her. She is one of the medical staff that Suleika misses when she leaves Mt. Sinai.

Estelle, Yehya, and Dennis are the first friends that Suleika makes in the hospital. Estelle has stage four liver cancer and is Suleika’s roommate at Mt. Sinai during her first week of chemotherapy. Estelle has been through chemotherapy before and offers Suleika a glimpse of what lies ahead. She meets Dennis, a man in his early forties, when he goes door to door to promote a hunger strike to get the hospital to heat their food. Dennis doesn’t get any visitors. Yehya is Suleika’s neighbor in the hospital. He’s from Algeria and undergoing treatment for lymphoma. They connect over shared backgrounds. He falls one evening after trying to bend down to pray.

Estelle, Yehya, and Dennis offer friendship to Suleika. They understand what she is going through. Despite their sickness, Estelle, Yehya, and Dennis show Suleika kindness and courage. When Suleika is in isolation, Yehya cracks her door when no one is looking and gives her a thumbs up. Dennis, Will, and Suleika watch the fireworks together and laugh at the absurdity and sadness of watching them from the hospital. Estelle is discharged, and she goes home to recover, but Suleika finds out in her next hospital visit that Dennis and Yehya died. Jaouad writes, “All I could think was, I’m next” (89). Their deaths make mortality intimate to Suleika for the first time during her illness.

Melissa is an artist. After she broke a bone in her foot, an x-ray identified a cancerous mass on her bone. She had been an art student and an assistant to Francesco Clemente, a contemporary painter. Melissa’s medium had been oil paint, but, after cancer treatments, oil makes her nauseous. She paints a series of watercolors, Self-Portrait with Mask, from her bed.

Suleika meets Melissa after Melissa sends her a message on Facebook. Melissa is quick to laugh and smile. She describes how, the first day she got her wig, a replica of her black locks with blonde highlights, she went to a friend’s house, showed them the wig, and then jumped into the pool. Her irreverence and playfulness contrast with her ominous prognosis. Her cancer relapse brought her to Sloan Kettering for treatment. Melissa and Suleika go on adventures together, talk about relationships and love, and plan trips together.

Melissa inspires Suleika to live without fear. After Melissa receives the news that cancer has spread to her lungs, she goes to India to teach painting and drawing classes and visit the Taj Mahal. She messages Suleika from India: “I’ve never felt more alive” (159). Carpe Diem takes on new urgency for Melissa as cancer spreads. Suleika sees how Melissa continues to embrace friends and the future even as her body fails her.

Suleika meets Johnny through her column, and he is the first young person she meets with the same diagnosis. Suleika and Johnny communicate over instant message while they are in isolation in Sloan Kettering, and their messages range from silly to serious. Johnny’s background makes it difficult for him to find a donor. Johnny has a crush on Melissa, and he takes Suleika and Melissa to dinner and a Broadway show. In their shared experience, they found comradery and unexpected intimacy.

Erika is a student in the food studies program at NYU, and she has breast cancer. She, Suleika, Melissa, and several other women go on a trip to Las Vegas. One night, Erika tells a story about a chef she’s been dating and how he still wants to be with her even after she tells him she has cancer. The last night, the conversation turns toward sex, loss, and menopause. Because of their vulnerability and shared experience, Suleika feels she’s able to be open about her sexual health and pleasure for the first time after chemotherapy. They also are the first to hear about her difficulties with Will. Their trust breaks through Suleika’s shame and silence about her changing body.

Max Ritvo is a poet and has the same diagnosis as Melissa, Ewing sarcoma. Jaouad describes Max as “brilliant and funny” (164). He attends Yale and receives treatments at Sloan Kettering. His turns of phrase give the cancer crew words for the intersection of youth experiences with cancer. He gets married to his long-term partner, and they move to California. When Suleika visits him there, his imminent death exposes her fear, and she admires the way that he keeps living his life despite his prognosis. He wants to understand Suleika’s fear of death, his death in particular, and demonstrates a depth of friendship that Suleika hasn’t experienced before.

Oscar is part schnauzer and part poodle. He is a runt with white fur and floppy ears. Suleika adopts him as a puppy after she and Will move to their East Village apartment. Oscar demands that she structure her days around taking care of him. He licks her awake, and they go on walks. Oscar often becomes the topic of conversation rather than Suleika’s illness.

Oscar accompanies Suleika on her road trip. Typically, Oscar didn’t sleep in bed with her, but when she’s afraid on the first night, she invites him into bed with her. His breathing eases her fears and helps her sleep. When they stop to see Cecilia, Melissa’s mother, she gives him a bag of treats, and at Salsa’s ranch, he chases chickens. Oscar doesn’t know how to be on a farm and runs away into the woods, but he gives Suleika a sense of security as she drives and camps across the country.

Jon is a jazz musician who met Suleika at a pre-college Julliard program when they were teenagers. He is tall and slim and speaks with a thick New Orleans accent. As a teenager, Jon was quiet and reserved, but as an adult, he tours with his band. Jon comes with his band to play for Suleika in the hospital. When Suleika and Jon meet at Stacie’s concert, it’s the first time that they’ve seen each other in over a year, and after she tells him about her breakup with Will, their evening starts to feel like a date. They talk every night. When they spend their first night together in New York, Jon tells Suleika that she’s the most beautiful woman he’s ever seen.

Jon becomes well-known and he gets more opportunities to share his work. Jon treats Suleika like she’s never been sick. Even though Suleika tries to distance him from all things medical, Jon takes her to get her port removed. He wants to be closer to Suleika and talk about the future, but she keeps him at a distance. When Suleika is on her road trip, Jon gives her space. He decides to meet her in Los Angeles so they can have a conversation in person. Jon says that he will continue to give her the space that she needs but asks that she stop shutting him out. Jon offers Suleika a way to find the healing she needs while also growing together in a relationship.

The friends that Suleika highlights from her road trip are people that she met while she had cancer. She has corresponded with most of them only through letters or emails because they connected with her through her column or blog. Each friend invites Suleika into the uncertainties and struggles that face in their relationships and bodies. Ned is the first person that Suleika visits. He is a teacher at a private high school in Connecticut, and she is invited to speak in his classroom. She feels shaky and nervous with the students, but in the end, Ned and the students’ openness gives her courage and confidence. Ned’s letter initially catches Suleika’s attention because he is young like her, and he foreshadows the difficulty of transitioning from cancer treatments into remission. They share their uncertainty about what lies ahead for their illnesses. Ned tells Suleika that he “derives sustenance from poetry.” The poems give him the language he needs to capture his experience, and he shares a few of his favorites with her. His need to find language will prove similar to others she visits.

Howard is an avid New York Times reader and has dealt with his chronic illness for many years. He responded to her first New York Times column. Like Ned, she sees how language connects Howard to a purpose. He often writes letters to the editor, and his letter writing connected him and his wife Meral while they lived in separate countries. Howard emphasizes the value of love and connection to Suleika, building on the gift of language from Ned.

Nitasha is a visual artist in Detroit who lives with a skin disease that causes her to itch all the time—dermatographism. Her skin turns red easily, and she uses it to trace out ideas for her next drawing. Nitasha takes her around Detroit and illustrates that more than one narrative can come from a place. Dermatographism and the economic downturn in Detroit can be transformed into beauty. Nitasha also takes Suleika to the tarot reader who gives Suleika words that help her dream again about the future.

Suleika stops to see Melissa’s mom, Cecelia, in New Hampshire. Their visit helps Suleika to feel deep grief for Melissa. Cecelia isn’t sure that she can find a way to keep going, and their conversation helps Suleika to cry about Melissa for the first time since her funeral. She met Bret in the waiting room on her first solo trip to chemotherapy, and she notes that in some ways she feels more connected to him than family because of their shared trauma even though they’ve only seen each other twice. Bret sees no end to the pills and the trips to the hospital, but he has a house that he’s working on, and their time together helps Suleika understand that healing isn’t about getting beyond the uncertainty but finding a way to live with it. Suleika met Salsa at a cancer camp during her years of treatment. Salsa lives with her large family on a ranch in Avon, Montana. Salsa and her daughter Erin give Suleika a tour of the ranch, and she eats several ranch-sourced meals while she is there. They care for one another and for her despite their differences. Erin and Salsa teach Suleika that fear doesn’t have to lead to isolation. For their family, a survivalist mentality has led toward community and intimacy.

Down the West Coast Suleika meets people who offer sage advice. Isaac, a young man who moved from rural Alaska and whose wife just left him, reminds Suleika that to be alive one must be open to the world, and that means open to pain. Rich in California gives Suleika a way for seeing travel but also illness. He tells her that when we travel, we take three separate trips: the preparations, the time on the trip, and the stories we tell ourselves after. The key is to be present for each one. These two pieces of advice help Suleika release her fear and find a way to move through the uncertainty of illness and grief. Whereas these two men offer Suleika advice, Katherine puts their advice into action. Her son Brooke passed away by suicide. Letter writing inspired her son, and after he died, the family called letter writing “Doing a Brooke.” She is a teacher and a two-time cancer survivor. The time with Suleika is marked by honesty, trust, and continued openness to love in the present even with so much loss. She listens “with her whole body” and reminds Suleika that grief isn’t meant to be carried alone (308). Katherine’s visit, like the time with Ned and his students, gives her the courage to face her fear and uncertainty.

Lil’ GQ’s letter makes Suleika think about how her situation relates to other experiences of in-between and isolation. He is on death row and in solitary confinement in a Texas prison. She stops to visit him near the end of her trip. He hasn’t had a visitor for about 10 years. He grew up in Fort Worth, and violence abounded in his neighborhood and his family. His mother was the first person to pull a gun on him. He acknowledges that he committed the crimes that put him in jail. Books and letters now help him learn from others. Jaouad notes that the letters and their conversations are how he makes sense of what’s happened to him. He, like Suleika, must reckon with his mortality and deal with it in isolation and through the drawn-out uncertainty of the justice system. He and Suleika have parallel journeys, and he, like others she has visited, teaches her to deepen her understanding of how to live present to one’s circumstances and the importance of connecting with oneself and others.

Several people encourage Suleika through their embrace of beauty and openness. She meets JR and Kit in Marfa, Texas. They live out of their VW camper van “Sunshine.” JR and Kit are free spirits, moving around and working wherever their whims take them. They ask Suleika to go camping with them, and on their way, they stop at a river, strip, and get in the freezing water. Camping and stripping at a river are things that the old Suleika never would have done. Suleika appears to shed a layer of her fear. Unique has a similar effect on Suleika. Unique is a teenager from Florida who has spent many months in treatment for liver cancer. She wrote Suleika a letter in response to her column, and the letter contained primarily emojis. When they eat fries together, Suleika sees joy. Unique tells Suleika her plans, and Unique’s optimism makes Suleika believe, even as so much about her health and relationships remains uncertain, that she has much to look forward to.