Between two kingdoms A memoir of a life interrupted

Suleika Jaouad

Book - 2021

An Emmy Award-winning writer and activist describes the harrowing years she spent in early adulthood fighting leukemia and how she learned to live again while forging connections with other survivors of profound illness and suffering.

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Subjects
Genres
Autobiographies
Published
New York : Random House [2021]
Language
English
Main Author
Suleika Jaouad (author)
Edition
First edition
Physical Description
x, 348 pages : map ; 25 cm
ISBN
9780399588587
  • Author's Note
  • Part 1.
  • 1. The Itch
  • 2. Métro, Boulot, Dodo
  • 3. Eggshells
  • 4. Space Traveling and Gaining Momentum
  • 5. Stateside
  • 6. Bifurcation
  • 7. Fallout
  • 8. Damaged Goods
  • 9. Bubble Girl
  • 10. Stop-Time
  • 11. Stuck
  • 12. Clinical Trial Blues
  • 13. The Hundred-Day Project
  • 14. Tango to Transplant
  • 15. On Opposite Ends of a Telescope
  • 16. Hope Lodge
  • 17. Chronology of Freedom
  • 18. The Mutt
  • 19. Dreaming in Watercolor
  • 20. A Motley Crew
  • 21. Hourglass
  • 22. The Edges of US
  • 23. The Last Good Night
  • 24. Done
  • Part 2.
  • 25. The In-Between Place
  • 26. Rites of Passage
  • 27. Reentry
  • 28. For those Left Behind
  • 29. The Long Foray
  • 30. Written on the Skin
  • 31. The Value of Pain
  • 32. Salsa and the Survivalists
  • 33. "Doing a Brooke"
  • 34. Homegoing
  • Epilogue
  • Acknowledgments
Review by Booklist Review

In her searing memoir, Emmy Award--winning speaker, writer, and activist Jaouad describes how, diagnosed with acute myeloid leukemia at age 22, she found herself, as Susan Sontag described coping with cancer, as living in a world divided into two kingdoms: the healthy and the sick. Having to be a resident of the latter initially comes as a shock to this ambitious, energetic, and talented recent college graduate, who never expected her life to turn out the way it did, and who once looked at a future filled with infinite possibilities, only to see it "shrouded in doom." But Jaouad dug deep over the ensuing four years to write a column for the New York Times, "Life, Interrupted," about her cancer experiences, and here she painstakingly chronicles her treatment. Certain words stand out, including one she coined, "incanceration," which captures her feelings about her lengthy and difficult hospital stays. Readers will feel her anxiety, fear, and despair, but also moments of hope as she pursues life through chemotherapy and a bone-marrow transplant. Jaouad addresses the psychological toll of the illness, from depression to grief to PTSD, and, in the end, confides that she is haunted and humbled by the thought that "it can all be lost in a moment." Boldly candid and truly memorable.

From Booklist, Copyright (c) American Library Association. Used with permission.
Review by Publisher's Weekly Review

New York Times columnist Jaouad (Life, Interrupted) makes a phenomenal debut with this big-hearted account of her devastating five-year battle with cancer. Symptoms first surfaced just before her graduation from Princeton, and she moved to Paris unaware of the cancer ravaging her bone marrow. After becoming ill, she returned to her family home in Saratoga, N.Y., and was diagnosed with acute myeloid leukemia. At 22, she wrote of the diagnosis, "I finally had an explanation for my itch, for my mouth sores, for my unraveling. I wasn't a hypochondriac, after all, making up symptoms." During her treatment, which was documented in a series of blog posts and videos for the Times, she was bolstered by heartfelt letters from readers, including one from a man in Ohio who wrote, "Meaning is not found in the material realm. Meaning is what's left when everything else is stripped away." As Jaouad's cancer went into remission, she felt estranged as fellow cancer patient friends died and her longtime boyfriend left her. Finally, a hundred-day road trip visiting those who wrote her letters guided her "to live again in the aftermath." Every chapter ends with a cliffhanger, adding a surprising level of suspense to a work where the broader outcome isn't in question. This is a stunning memoir, well-crafted and hard to put down. (Feb.)

(c) Copyright PWxyz, LLC. All rights reserved
Review by Library Journal Review

Jaouad, a columnist who chronicled her battle with cancer in the New York Times, expands on her experience in her debut memoir. At the age of 22, newly graduated from Princeton, she is diagnosed with acute myeloid leukemia. She undergoes a plethora of intense treatments, including a bone marrow transplant and endless rounds of chemotherapy. Jaouad is adroit at describing the conflicting emotions she wades through, including rage, guilt, fear, longing, defiance, and gratitude. She befriends other cancer patients along the way, including a radiant artist named Melissa, who refuses to let her terminal diagnosis prevent her from traveling to India. Jaouad's relationship with a loyal boyfriend ultimately doesn't survive the years-long ordeal, but she finds a creative outlet through her column. Her writing attracts a multitude of readers and fellow survivors whom she seeks out on a 100-day road trip across the country when her health stabilizes. VERDICT The author's book title is a nod to Susan Sontag's Illness as Metaphor, in which she asserts that there is a "kingdom of the well" and a "kingdom of the sick." Jaouad does a beautiful job of writing from this place of "dual citizenship," where she finds pain but also joy, kinship, and possibility.--Barrie Olmstead, Lewiston P.L., ID

(c) Copyright Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Review by Kirkus Book Review

A thoughtful memoir of dealing with cancer and feeling "at sea, close to sinking, grasping at anything that might buoy me." "It began with an itch." So commences a story whose trajectory is sadly familiar to many survivors. Jaouad, then a student at Princeton, attributed it to some internal pest. "As my energy evaporated and the itch intensified," she writes, "I told myself it was because the parasite's appetite was growing. But deep down, I doubted there ever was a parasite. I began to wonder if the real problem was me." The problem was not her, though the post-graduation ambit of cocaine- and alcohol-filled nights didn't help. Eventually, home after living in Paris, the author learned the truth: She had a form of cancer that affects the blood and bone marrow, manifested by that itching and fatigue that no amount of coffee or uppers could overcome, "not evidence of partying too hard or an inability to cut it in the real world, but something concrete, something utterable that I could wrap my tongue around." Battling her advanced leukemia, Jaouad also wrestled with complicated issues about mortality and hope. Fortunately, all the endless hours in hospitals and clinics, all the chemotherapy and psychological therapy and bloodwork and anguish resulted in her continued habitation of the kingdom of earth--though not all of her fellow travelers were as fortunate. While still being treated and advised against traveling, she took a friend's ashes to India, "a first exercise in confronting my ghosts." The trip was also part of a program of lifting her vision from the intensely self-focused back to the larger world, which set her on a rehabilitative road trip and the memorable realization that "it all can be lost in a moment," good reason to enjoy life while you can. Memorable, lyrical, and ultimately hopeful: a book that speaks intently to anyone who suffers from illness and loss. Copyright (c) Kirkus Reviews, used with permission.

Copyright (c) Kirkus Reviews, used with permission.

1 The Itch It began with an itch. Not a metaphorical itch to travel the world or some quarter-­life crisis, but a literal, physical itch. A maddening, claw-­at-­your-­skin, keep-­you-­up-­at-­night itch that surfaced during my senior year of college, first on the tops of my feet and then moving up my calves and thighs. I tried to resist scratching, but the itch was relentless, spreading across the surface of my skin like a thousand invisible mosquito bites. Without realizing what I was doing, my hand began meandering down my legs, my nails raking my jeans in search of relief, before burrowing under the hem to sink directly into flesh. I itched during my part-­time job at the campus film lab. I itched under the big wooden desk of my library carrel. I itched while dancing with friends on the beer-­slicked floors of basement taprooms. I itched while I slept. A scree of oozing nicks, thick scabs, and fresh scars soon marred my legs as if they had been beaten with rose thistles. Bloody harbingers of a mounting struggle taking place inside of me. "It might be a parasite you picked up while studying abroad," a Chinese herbalist told me before sending me off with foul-­smelling supplements and bitter teas. A nurse at the college health center thought it might be eczema and recommended a cream. A general practitioner surmised that it was stress related and gave me samples of an antianxiety medication. But no one seemed to know for sure, so I tried not to make a big deal out of it. I hoped it would clear up on its own. Every morning, I would crack the door of my dorm room, scan the hall, and sprint in my towel to the communal bathroom before anyone could see my limbs. I washed my skin with a wet cloth, watching the crimson streaks swirl down the shower drain. I slathered myself in drugstore potions made of witch hazel tonic and I plugged my nose as I drank the bitter tea concoctions. Once the weather turned too warm to wear jeans every day, I invested in a collection of opaque black tights. I purchased dark-­colored sheets to mask the rusty stains. And when I had sex, I had sex with the lights off. Along with the itch came the naps. The naps that lasted two, then four, then six hours. No amount of sleep seemed to appease my body. I began dozing through orchestra rehearsals and job interviews, deadlines and dinner, only to wake up feeling even more depleted. "I've never felt so tired in my life," I confessed to my friends one day, as we were walking to class. "Me too, me too," they commiserated. Everyone was tired. We'd witnessed more sunrises in the last semester than we had in our entire lives, a combination of logging long hours at the library to finish our senior theses followed by boozy parties that raged until dawn. I lived at the heart of the Princeton campus, on the top floor of a Gothic-­style dorm, crested with turrets and grimacing gargoyles. At the end of yet another late night, my friends would congregate in my room for one last nightcap. My room had big cathedral windows and we liked to sit on the sills with our legs dangling over the edge, watching as drunken revelers stumbled home and the first amber rays streaked the stone-­paved courtyard. Graduation was on the horizon, and we were determined to savor these final weeks together before we all scattered, even if that meant pushing our bodies to their limits. And yet, I worried my fatigue was different. Alone in my bed, after everyone had gone, I sensed a feasting taking place under my skin, something wending its way through my arteries, gnawing at my sanity. As my energy evaporated and the itch intensified, I told myself it was because the parasite's appetite was growing. But deep down, I doubted there ever was a parasite. I began to wonder if the real problem was me. In the months that followed, I felt at sea, close to sinking, grasping at anything that might buoy me. For a while I managed. I graduated, then joined my classmates in the mass exodus to New York City. I found an ad on Craigslist for a spare bedroom in a large, floor-­through loft located above an art supply store on Canal Street. It was the summer of 2010 and a heat wave had sucked the oxygen out of the city. As I emerged from the subway, the stench of festering garbage smacked me in the face. Commuters and hordes of tourists shopping for knockoff designer bags jostled each other on the sidewalks. The apartment was a third-­floor walk-­up and by the time I lugged my suitcase to the front door, sweat had turned my white tank top see-­through. I introduced myself to my new roommates; there were nine of them. They were all in their twenties and aspiring something-­or-­others: three actors, two models, a chef, a jewelry designer, a graduate student, and a financial analyst. Eight hundred dollars a month bought each of us our own windowless cave partitioned by paper-­thin drywall that a slumlord had erected to get the most bang for his buck. I had scored a summer internship at the Center for Constitutional Rights, and when I showed up on my first day, I felt awed to be in the same room as some of the most fearless civil liberties lawyers in the country. The work felt important, but the internship was unpaid and living in New York City was like walking around with a giant hole in my wallet. I quickly blew through the two thousand dollars I'd saved up over the school year. Even with the babysitting and restaurant jobs I worked in the evenings, I was barely scraping by. Imagining my future--­expansive yet empty--­filled me with terror. In moments when I allowed myself to daydream, it thrilled me, too. The possibilities of who I might become and where I might land felt infinite, a spool of ribbon unfurling far beyond what my mind's eye could see. I envisioned a career as a foreign correspondent in North Africa, where my dad is from and where I'd lived for a stint as a kid. I also toyed with the idea of law school, which seemed like a more prudent route. Frankly, I needed money. I had only been able to attend an Ivy League college because I'd received a full scholarship. But out here, in the real world, I didn't have the same kind of safety nets--trust funds, family connections, six-­figure jobs on Wall Street--­as many of my classmates. It was easier to fret about the uncertainty ahead than to confront another, even more unsettling shift. During my last semester, to combat the fatigue, I had chugged caffeinated energy drinks. When those stopped working, a boy I'd briefly dated gave me some of his Adderall to survive finals. But soon that wasn't enough either. Cocaine was a party staple in my circle of friends, and there were always guys hanging around who offered a line here and there for free. Nobody batted an eye when I started partaking. My roommates in the Canal Street loft had turned out to be hard-­partying types, too. I began to take 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. By the last days of summer, I struggled to recognize myself. The muffled sound of my alarm clock dragged like a dull knife through dreamless sleep. Each morning, I'd stumble out of bed and stand in front of the floor-­length mirror, taking inventory of the damage. Scratches and streaks of drying blood covered my legs in new places. My hair hung to my waist in dull, chaotic waves that I was too tired to brush. Shadowy crescents deepened into dark moons under big bloodshot eyes. Too burned-­out to face sunlight, I started showing up later and later to my internship; then, one day, I stopped showing up altogether. I disliked the person I was becoming--­a person who tumbled headfirst into each day, in constant motion but without any sense of direction; a person who reconstructed blackouts, night after night, like some private investigator; a person who constantly reneged on commitments; a person who was too embarrassed to pick up her parents' phone calls. This isn't me, I thought, staring at my reflection with disgust. I needed to clean up my act. I needed to find a real job, one that paid. I needed some distance from my college crew and my Canal Street roommates. I needed to get the hell out of New York City, and soon. On an August morning, a few days after I quit the internship, I rose early and took my laptop out to the fire escape and started searching for jobs. It had been a rainless summer, and the sun blazed, baking my skin to a tan, leaving little white dots like braille all over my legs where the scratching had scarred. A position for a paralegal at an American law firm in Paris caught my eye, and on a whim I decided to apply. I spent all day working on my cover letter. I made sure to mention that French was my first language and that I spoke some Arabic, too, hoping for a competitive edge. Being a paralegal wasn't my ideal job--­I didn't even really know what it entailed--­but it seemed like the kind of thing a sensible person might do. Mostly, I thought that a change of scenery could save me from my increasingly reckless behavior. Moving to Paris wasn't a bucket list item: it was my escape plan. Excerpted from Between Two Kingdoms: A Memoir of a Life Interrupted by Suleika Jaouad All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.