"Between Two Kingdoms", ("The Known World")

[fiefoe]

Suleika Jaouad's memoir got deeper and better as she moved the precarious titular place.

• Finding a match was especially challenging for minorities who were underrepresented in bone marrow registries. As a first-generation American from a mixed ethnic background, I found myself in a scary place... Siblings were the best chance for a match, but a match only happened about 25 percent of the time.
• There, on the list of side effects, sandwiched between vomiting, hair loss, heart damage, and organ failure, I saw something that upset me more than any of the bad news I’d received so far: The cancer treatment that could save my life would also most likely leave me infertile. Since my diagnosis, I had felt relief, followed by shock, confusion, and horror. And now, something else: a wrenching sense of foreclosing.
• I noticed the clouds floating flimsily overhead like tissue paper. I noticed Central Park, bursting with color, the luscious greens of young leaves sprouting from trees, the fuchsia spray of azalea bushes, the pale yellow tulips shooting up from the earth. I opened my eyes wider, trying to take it all in, to memorize the feel of the sun on my hair, the way the spring air breezed the nape of my neck.
• When I woke up in the surgical recovery room, I looked down at my bloodied chest. Protruding from a wound below my collarbone, I saw a plastic tube with three dangling lumens, like the tentacles of some abhorrent sea creature. The sight of my altered body shocked me.
• Now everywhere I went, I stood out. Cancer spoke for me before I could say the first word, and rooms went quiet when I walked in.
• The caregiver’s life is ultimately dictated by the cycle of decay and demands of someone else’s body.
• Someone like Will’s ex, who had a full head of silky blond hair, a staff writer position at a prestigious magazine, and working ovaries—someone with prospects instead of a prognosis.
• The wedding was postponed, joining the countless other plans and goals and projects that had been relegated to purgatory until further notice. No one spoke of it again. <> A kind of sundering was taking place within me: There was the good-natured patient, young and spunky and cheerful, who raged courageously against her disease, determined to make the best of her terrible circumstances, and this new version, envious, short-fused, sleeping sixteen hours a day and rarely ever leaving her room.
• Suffering can make you selfish, turn you cruel. It can make you feel like there is nothing but you and your anger, the crackle of exam table paper beneath bruised limbs, the way your heart pounds into your mouth when the doctor enters the room with the latest biopsy results.
• For my father’s project, he wrote down 101 childhood memories that he printed and bound into a little book that he gave to me on Christmas morning. It was my first real glimpse into his past. He wrote about his family’s annual spring outings to visit the shrine of the patron saint Sidi Gnaw, in the Matmata caves of Tunisia. He wrote about my great-great-grandmother Oumi ’Ouisha, the town healer, who would send my father to fetch the herbs and desert plants she kept under her bed as she murmured incantations into her patients’ ears.
• I understood now why so many writers and artists, while in the thick of illness, became memoirists. It provided a sense of control, a way to reshape your circumstances on your own terms, in your own words. “That is what literature offers—a language powerful enough to say how it is,” Jeanette Winterson wrote. “It isn’t a hiding place. It is a finding place.”
• I began to research the long lineage of bedridden artists and writers who alchemized their 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.
• When you are facing the possibility of imminent death, people treat you differently: Their gaze lingers, recording each mole, tracing the shape of your lips, noting the exact shade of your eyes, as if they are painting a portrait of you to hang in memory’s gallery. They take dozens of pictures and videos of you on their phones, trying to freeze-frame time, to bottle the sound of your laugh, to immortalize meaningful moments that can later be revisited in a memory cloud. All of this attention can feel like you are being memorialized while you are still alive.
• On March 29, 2012, my column and an accompanying video series—called “Life, Interrupted”—was scheduled to make its debut. Just a few days after that I would receive the bone marrow transplant. The confluence of these impending milestones was dizzying: a dream and a nightmare dancing the tango.
• ON MY FIRST night in the bone marrow transplant unit, I lay in my hospital bed, eyes wide, under a halo of hanging IV bags. My fear was alive. I could smell its wet fur in the room and feel the chuffing of its breath, hot on my skin.
• For the person facing death, mourning begins in the present tense, in a series of private, preemptive goodbyes that take place long before the body’s last breath.
• The Patient was talked at, looked at, probed, prodded, and whispered about. They had a singular goal—to cure the Patient so she could go back to being herself. In all this lay a strange irony: It had only been a year since my diagnosis, but I could hardly remember what being myself was like.
• There’s a tipping point, a special kind of claustrophobia reserved for long hospitalizations, that sets in around week two of being locked in a room. Time starts to elongate; space falls apart. You stare at the ceiling for so many hours that you begin to see shapes and patterns, entire universes appearing in the cracks and crevices of the popcorn plaster.
• Inspired in part by him, I began drafting a column in which I reflected on what I termed my “incanceration”: <> To a cancer patient, the lexicon of the prisoner seems to scream out from everywhere.
• My weight had plummeted and my already skeletal torso shrank, but my cheeks had grown round and swollen from all the steroids and liquids being pumped into my system. Moon face, cancer patients call this. Shrunken and stretched in all the wrong places, broken blood vessels blooming like watercolor paint across the surface of my skin, I felt hideous—less moon face, more monster.
• It was an enormous pillbox labeled with the days of the week, and the responsibility to take the dozens of medications on time. Freedom was going solo to chemo. It was the realization that I was in this alone. In a sense, I always had been.
• Oscar finished getting his booster shots, and I got all of my childhood vaccinations for the second time. (A patient’s childhood immunizations are lost during a bone marrow transplant.)
• Max described morphine withdrawal as feeling like “a sobbing window pane having hammers and acid taken to it.” Scan anxiety was like “eating a pizza and not being sure if those are pepper flakes or small red mites.” Losing his virginity in a hospital bed was like “having sex on a lumpy raft in the middle of a sea of antiseptic.”
• We unpacked our suitcases, and the coffee table was soon covered in wigs. On the bar, we lined up all of our medications like shot glasses; between the five of us, we had more than a hundred pill bottles.
• No one on my medical team had ever broached the topic of sexual health and cancer during my treatment. No one warned me that menopause is a common side effect of the treatment I had undergone.
• We finished each other’s sentences without realizing it, and we were bound by a shared history that no one else could understand. Our loyalty to each other was oceanic. <> In the privacy of our apartment, however, we had the same screaming arguments night after night.
• “Partners in crime,” Melissa said to me under her breath after the cop wished us well and sent us on our way. <> “Bad to the bone—literally diseased,” I quipped back.
• The inner scaffolding that had been supporting me since my diagnosis had crumbled. While in treatment, I had been surrounded by the world’s best cavalry: my boyfriend, my family and friends, and a brilliant medical team that had worked tirelessly to keep me alive. The goal had been to get rid of the cancer. But now that I was done with the “cut, poison, burn” part of the disease, I sat dazed and alone in the rubble, unsure how to move on, wondering where everyone had gone and what to do from here. <> I hadn’t noticed the fine print until now: When you survive something that was thought to be unsurvivable, the obvious is gained. You have your life—you have time. But it’s only when you get there that you realize your survival has come at a cost.
• It is 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. I’m done with chemo but I still have my port, which my doctors are waiting to remove until I’m “further out of the woods.” I’m left with the question of how to repatriate myself to the kingdom of the well, and whether I ever fully can.
• Will’s blue eyes splinter. As I watch the shock unfurl across his face, I feel a sense of horror at myself. Denial allows you to operate within a vacuum, without having to consider the implications of your actions on your own life or on others. The hurt on his face nauseates me. But a shameful part of me also feels gratified. On some twisted, subconscious level, I think I’ve been wanting Will to experience a sliver of the pain I felt when he moved out.
• Even so, I’m stunned by how quickly we’ve transitioned from being a pair, utterly enmeshed and in love, to two strangers siloed in private grief and anger. As we set about disassembling what’s left of us, it feels less like the final stages of a breakup than the beginning of a gutting, protracted divorce.
• “What’s wrong?” Jon says in alarm when he returns. It’s a question he’ll ask me repeatedly in the coming months, shocked to discover that the happy, confident, game-for-anything woman he fell in love with is an aspirational act.
• The Taj appears like a floating poem in the dawn, a moon-white dream of marble pillars and minarets. It’s a place that spoke to Melissa as she faced the end of her life,
• Taking Melissa’s ashes to the place she loved most doesn’t lessen the pain of losing her, but it has shown me a way that I might begin to engage with my grief. It has introduced me to the role of ritual in mourning—the ceremonies that allow us to shoulder complicated feelings and confront loss; that make room for the seemingly paradoxical act of acknowledging the past as a path toward the future. It gets me thinking about the other ways we mark the crossing of thresholds: birthdays and weddings and baby showers, baptisms and bar mitzvahs and quinceañeras. These rites of passage allow us to migrate from one phase of our lives to another; they keep us from getting lost in transit. They show us a way to honor the space between no longer and not yet.
• One day, a black bear lumbers onto the property and Oscar leaps up from the porch, roaring at it with the ferocity of a lion. The bear is so startled that it stumbles and trips, then breaks into a sprint and disappears behind the tree line. “The courage of children and beasts is a function of innocence,” Annie Dillard once wrote. “We let our bodies go the way of our fears.”
• There is no restitution for people like us, no return to days when our bodies were unscathed, our innocence intact. Recovery isn’t a gentle self-care spree that restores you to a pre-illness state. Though the word may suggest otherwise, recovery is not 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.
• His answer is dizzying, and as we continue on, I realize what I’m feeling is profound disappointment. The notion that reentry is an ongoing and difficult process is usually referenced in the context of veterans of war or the formerly incarcerated, not to survivors of illness.
• ODD THINGS HAPPEN when you’re on a road trip alone. The monotony of driving becomes meditative: The mind unwrinkles. As the usual anxieties and concerns vacate, daydreams flit in. Occasionally, a wisp of an idea appears out of nowhere only to recede, a shimmery mirage in a desert. Other times, an avalanche of memories tumbles forth, loosened by an old song on the radio or a déjà vu–inducing landscape. The interplay between geography and memory becomes a conversation.
• People rarely ask about my pre-illness interests, and as I recount long-forgotten pastimes, I feel as though I am touring someone else’s life. <> There’s an old Tunisian saying that your entire life is inscribed on your forehead but it’s as though everything that came before my diagnosis has been scrubbed from mine.
• I relate to Detroit, a city of many narratives. A place powered by the auto industry that powered America. A place inscribed by segregation, but also by such promise that tens of thousands of black Americans settled there during the Great Migration. A place that nearly died when the car companies downsized and left, but didn’t die, refuses to die. A place where the future is painted upon the palimpsest of a painful past. Upon skin that rears up in welts, angry and beautiful—a beauty that transcends anger but also wouldn’t be possible without it. And isn’t that how it always goes, catastrophe forcing reinvention?
• In a way, setbacks were easier to deal with when we were still in treatment: We were prepared for the possibility that things could take a turn. But when the body betrays you again and again, it obliterates whatever nascent trust you’ve restored in the universe and your place in it. Each time, it becomes harder to recover your sense of safety. 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.
• realizing that if I am to cross the distance between near-death and renewal, instead of trying to bury my pain, I must use it as a guide to know myself better. In confronting my past, I have to reckon not only with the pain of losing other people but also with the pain I’ve caused others. I must keep seeking truths and teachers on these long, lonely stretches of highway even when—especially when—the search brings discomfort.
• The instinct to be self-sufficient, to cut yourself off from the world, to prepare for the worst—well, those are things I can relate to on some level. It’s what I’ve been doing with Jon and now with Max, guarding my heart against more loss. But for this family, the idea of disaster breeds closeness and generosity. In the fear of death, they have found a source not of alienation, but of intimacy.
• I used to think healing meant ridding the body and the heart of anything that hurt. It meant putting your pain behind you, leaving it in the past. But I’m learning that’s not how it works. 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.
• The night sky is powdered with more stars than I’ve ever seen in my life. <> Gazing up at the Milky Way, I remember when all I wanted is what I have in this moment. Sitting on the kitchen floor of my old apartment, sicker than I’d ever felt, my heart fractured into ten thousand tiny pieces, I needed to believe that there was a truer, more expansive and fulfilling version of my life out there.
• Although my twenties have been wrenching, confusing, difficult—to the point of sometimes feeling unendurably painful—they have also been the most formative years of my life, a time imbued with the sweet grace of a second chance, and an inundation of luck, if such a concept can be said to exist at all. The tangling of so much cruelty and beauty has made of my life a strange, discordant landscape. It has left me with an awareness that haunts the edges of my vision—it can all be lost in a moment—but it’s also given me a jeweler’s eye.

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The timeline in Edward P Jones's novel is too jumbled for me to follow the story via the audiobook.

• he ate it not only to discover the strengths and weaknesses of the field, but because the eating of it tied him to the only thing in his small world that meant almost as much as his own life. <> This was July, and July dirt tasted even more like sweetened metal than the dirt of June or May. Something in the growing crops unleashed a metallic life that only began to dissipate in mid-August, and by harvest time that life would be gone altogether, replaced by a sour moldiness he associated with the coming of fall and winter, the end of a relationship he had begun with the first taste of dirt back in March,
• The white people’s doctor had come the morning of the first day, as a favor to Caldonia’s mother, who believed in the magic of white people, but that doctor had only pronounced that Moses’s master, Henry Townsend, was going through a bad spell and would recover soon. The ailments of white people and black people were different, and a man who specialized in one was not expected to know much about the other, and that was something he believed Caldonia should know without him telling her.
• It took Moses more than two weeks to come to understand that someone wasn’t fiddling with him and that indeed a black man, two shades darker than himself, owned him and any shadow he made. Sleeping in a cabin beside Henry in the first weeks after the sale, Moses had thought that it was already a strange world that made him a slave to a white man, but God had indeed set it twirling and twisting every which way when he put black people to owning their own kind. Was God even up there attending to business anymore?
• After the white woman’s husband died, her slaves, Mirtha and Destiny, had taken over and kept the woman prisoner for months, working her ragged with only a few hours rest each day until her hair turned white and her pores sweated blood. Caldonia said she understood that Mirtha and Destiny had been sold to try to compensate Elizabeth, to settle her away from that farm with its memories, but Fern said she understood that the slave women had been killed by the law. When Elizabeth was finally rescued, she did not remember that she was supposed to be the owner, and it was a long time before she could be taught that again.
• He would have called Rita by name but she had not distinguished herself enough in his life for him to remember the name he had given her at birth. It was enough that the name was written somewhere in his large book of births and deaths, the comings and goings of slaves. “Noticeable mole on left cheek,” he had written five days after Rita’s birth. “Eyes grey.” Years later, after Rita disappeared, Robbins would put those facts on the poster offering a reward for her return, along with her age.
• Before he got up, Augustus told his son that he would see him on Sunday, the day Robbins was now allowing for visits. Then Augustus said, “I’ll be back for you,” meaning the day he would ultimately free the boy. But it took far longer to buy Henry’s freedom than his father had thought; Robbins would come to know what a smart boy Henry was. The cost of intelligence was not fixed and because it was fluid, it was whatever the market would bear and all of that burden would fall upon Mildred and Augustus.
• Sometimes Henry did not show up, even if the cold was bearable for a visit of a few minutes. Mildred and Augustus would wait hour after hour, huddled in the wagon under quilts and blankets, or walking hopefully up and down the road, for Robbins had forbidden them to come onto his land except when Augustus was making a payment on the second and fourth Tuesdays of the month. They would hope some slave would venture out, going to or from the mansion, so they could holler to him or her to go get their boy Henry. But even when they managed to see someone and tell them about Henry, they would wait in vain for the boy to show up.
• They were quite large stones, which they would boil for many hours at home on Sunday mornings before setting out to see Henry. Then, just before they left home, the stones were wrapped in blankets and placed in the center of the wagon. When the stones stopped giving warmth and the boy began complaining of the cold, they knew it was time to go.
• “We wouldn’t hurt him to save the world,” Mildred said to Robbins’s back. She began crying because she saw a month of days spread out before her and they added up to more than a thousand. Augustus held her and kissed her bonneted head and then helped her up on to the wagon. The journey home to southwest Manchester County always took about an hour or so, depending upon the bitterness or kindness of the weather.
• He told his government the children were slaves and he let it go at that, not saying anything about their white blood or their Indian blood. The census taker had a great belief that his government could read between the lines.
• Robbins was aware that a traveling eye in a boy he would have had with his white wife would have meant some kind of failing in the white boy, that he had a questionable future and could receive only so much fatherly love. But in the child whose mother was black and who had Robbins’s heart, the traveling eye served only to endear him even more to his father.