The right one weighs 568 grams, the left one, 547, over two pounds off my chest. For five days, two tubes drain the incisions. Ruby, then amber, fluids pool into translucent bulbs pinned to my white compression vest.<\/p>\n\n\n\n
It\u2019s Christmas. <\/p>\n\n\n\n
I am the tree; the blood bulbs, ornaments. <\/p>\n\n\n\n
Inside the bulbs my red blood cells are shaped like marbles, tiny spheres. The name of this condition is hereditary spherocytosis, which means I got these marbles from my mother, a hematological heirloom. Behind our upper left ribcage, our spleens destroyed these marbles and made us anemic, jaundiced, low iron, high platelet. My mother\u2019s spleen was six years old when it was removed; mine was 13. <\/p>\n\n\n\n
The night before my splenectomy, she ran me a hot bath and massaged my legs with lavender lotion. When you wake up you won\u2019t be able to see or move for about 30 minutes,<\/em> she said. But you will be able to hear.<\/em> The surgery lasted four hours. I didn\u2019t read or talk to anyone while you were under,<\/em> she said. I just imagined your body inch by inch.<\/em><\/p>\n\n\n\n Once my destruction site was excised, the spheres passed through my blood undetonated. Spleenless me did new things: hike, run, make plans, keep plans, get good grades. The words on my report cards changed. The green insuficientes became suficientes, bienes, notables, sobresalientes. <\/p>\n\n\n\n Sobre, above.<\/p>\n\n\n\n Saliente, salient.<\/p>\n\n\n\n Spleenless me rose above.<\/p>\n\n\n\n \u201cRigor\u201d appeared everywhere, underlined. <\/p>\n\n\n\n 20 years after my splenectomy, three weeks before top surgery, my surgeon calls to discuss how my blood might behave. <\/p>\n\n\n\n Spleenless people with spherocytosis have high platelets. <\/p>\n\n\n\n Platelets make the blood clot. <\/p>\n\n\n\n When it comes to surgery, you want to clot, not a<\/em> clot. <\/p>\n\n\n\n Normal platelet levels range between 150,000 to 450,000.<\/p>\n\n\n\n What I want is to become my own occupant.<\/p><\/blockquote><\/figure>\n\n\n\n Mine are between 600,000 and 750,000. <\/p>\n\n\n\n Because I\u2019m a spleenless person made of marbles, my surgeon says my chance of developing a post-surgical clot that could move somewhere \u201ctricky\u201d is something to \u201cconsider.\u201d By \u201ctricky\u201d I assume she means lung, heart, brain. <\/p>\n\n\n\n \u201cDo you feel comfortable doing the surgery?\u201d I ask.<\/p>\n\n\n\n \u201cAbsolutely. It\u2019s important to you, and you\u2019ll be so happy when it\u2019s done.\u201d<\/p>\n\n\n\n I open my brown Moleskin and write down the words \u201chappy\u201d and \u201cimportant.\u201d I remind myself: I trust this surgeon. She\u2019s thorough, serious, kind, a total genius; I love her results. <\/p>\n\n\n\n Toward the end of our conversation she asks if I\u2019m \u201cexcited.\u201d <\/p>\n\n\n\n The word surfaces in my clinical notes. <\/p>\n\n\n\n I\u2019m officially medically excited. <\/p>\n\n\n\n I\u2019m not excited to have surgery.<\/p>\n\n\n\n I do not feel certain about this choice.<\/p>\n\n\n\n Uncertainty does not negate desire.<\/p>\n\n\n\n Some people modify their bodies to experience self-alignment, but I don\u2019t have a coalesced self I feel misaligned from.<\/p>\n\n\n\n I sense my lack of coalescence is my misalignment. <\/p>\n\n\n\n \u201cDysphoria,\u201d writes Max Delsohn, \u201c[feels] like being a tourist in my own body.\u201d<\/p>\n\n\n\n Right: tourist, interloper, spectator, seditionist, assailant. I watch myself from below and above. What I want is to become my own occupant.<\/p>\n\n\n\n \u201cIt sounds like this surgery is gender-expansive,\u201d says my friend Moa. <\/p>\n\n\n\n Her language piques me, a progression: gender confirmation to affirmation to expansion. We confirm dates and times; an external action concretizes the event. We affirm, state, declare; to affirm implies an awareness of the thing being affirmed. It makes sense to feel excitement or certainty if body modification stems from what is known. But expansion doesn\u2019t have to be sure or aware of itself. Dough expands, and moss, and mycelium, and water. Expansion doesn\u2019t require certainty, just curiosity; curiosity is enough. <\/p>\n\n\n\n \u201cAnd expansion can become affirmation,\u201d says Moa. <\/p>\n\n\n\n After wildfires tear through forests, dormant seeds germinate\u2014slowly, then all at once. <\/p>\n\n\n\n But I am terrified of my marbles, of my blood.<\/p>\n\n\n\n In the weeks leading up to the surgery, I spend hours trying to make appointments with hematologists who can\u2019t see me in time because I\u2019m new to the area and the waiting lists are long. I find an online hematology service and meet with a practitioner who looks at my labs and assures me I\u2019ll be fine. I ask my primary doctor whether this conclusion is enough to clear me for surgery and she says yes. I ask my surgeon the same question and she says yes. But my fear gets the better of me, so I seek a fourth opinion. I book a flight out of state to see my old doctor who specializes in spherocytosis.<\/p>\n\n\n\n Then I cancel the trip. <\/p>\n\n\n\n It\u2019s too expensive, another risk.<\/p>\n\n\n\n I\u2019m more likely to get sick from a trip than from a clot. <\/p>\n\n\n\n Spleenless people are prone to infections. Certain bacterias\u2014streptococcus or neisseria\u2014sneak around our immune systems cloaked in capsules made of polysaccharides. These capsules protect pathogens from the body\u2019s attacks; spleenless people have less ammunition. If I catch a bad cold, they\u2019ll cancel the surgery. And if they cancel the surgery, it may not be rescheduled because look at the United States.<\/p>\n\n\n\n When I think about not going through with it, I feel crestfallen. <\/p>\n\n\n\n And yet it would be so much easier to absorb risk for something I\u2019m excited about.<\/p>\n\n\n\n \u201cNo one said this would be easy,\u201d says Liam, my partner of 11 years. <\/p>\n\n\n\n \u201cI haven\u2019t had a plan, or an ulterior motive, or a rhyme or a reason [for] what I\u2019ve done,\u201d says Dr. Susan Stryker. \u201cI was just doing my thing to unfold the mystery of my transness to myself.\u201d <\/p>\n\n\n\n Unfold as in germinate as in expand. <\/p>\n\n\n\n Years ago I went on social media and shared the name and pronouns that make me feel like a person rather than an assumption. Once the language around me changed, my curiosity teethed. Might I feel closer to myself if I shapeshift? \u201cSometimes the feelings are certain and come first, and the action follows,\u201d writes Krys Malcolm Belc. \u201cBut other times, the action has to lead the feeling.\u201d And sometimes clarity comes after action, after feeling. <\/p>\n\n\n\n It\u2019s an incredibly bureaucratic process, to become. I consulted, scheduled, perused pictures of stunning chests, found a few I loved, and set the date for my deconstruction. Then I graduated and moved down the coast, twice. Now I\u2019m supposed to go under in two weeks, and I\u2019m bone tired. Liam, who went through this surgery a few months ago, asks me if it would be better to wait.<\/p>\n\n\n\n \u201cIt\u2019s not an option,\u201d I say. <\/p>\n\n\n\n My stubbornness surprises me.<\/p>\n\n\n\n I am unyielding\u2014not excited. Rigorous\u2014not certain. <\/p>\n\n\n\n I read essay after essay after essay.<\/p>\n\n\n\n From Naomi Gordon-Loebl, I learn the Latin roots of the word \u201cdecide.\u201d<\/p>\n\n\n\n De, off.<\/p>\n\n\n\n Caedere, to cut. <\/p>\n\n\n\n I read medical studies about clots and spherocytosis.<\/p>\n\n\n\n I check my blood, once, thrice.<\/p>\n\n\n\n My platelets climb.<\/p>\n\n\n\n 662,000, 681,000, 738,000. <\/p>\n\n\n\n The day my surgery date was confirmed, I was with my friend Heather in the Nashville International Airport. This was before my surgeon cautioned me about my marbles and platelets. I was in the luxurious space between opportunity and execution; this was my specter of \u201cexcitement.\u201d <\/p>\n\n\n\n I\u2019d met Heather in graduate school, where she was earning her Ph.D in fiction. I was drawn to her incisive humor and to the way she noticed subtle patterns in the novels we studied. We\u2019d just spent 10 days in a writing conference on a campus with gothic chapels; at night we slept in a dorm that faced a cemetery. With hours to kill before our flights home, we drank iced coffee and I told her my news. <\/p>\n\n\n\n \u201cCongratulations,\u201d she said, with a smile that seeped through me.<\/p>\n\n\n\n A few months later, Heather showed up to my graduating thesis defense with roses, carnations, and lilies in a round glass jar. For two hours she listened to me answer questions about my work; she observed a pattern, an undertone; she wrote it down. <\/p>\n\n\n\n Later, over chicken yakisoba noodles, she air-dropped me this note:<\/p>\n\n\n\n \u201cBilly uses information & research to feel in control but it also feeds their anxiety\u2014can we sit in knowledge and use it to process & understand while accepting lack of control?\u201d <\/p>\n\n\n\n I do not accept lack of control.<\/p>\n\n\n\n I will control my body. <\/p>\n\n\n\n I will carve it into what I imagine.<\/p>\n\n\n\n I can\u2019t control the way my blood clots.<\/p>\n\n\n\n But I can control the information I have about the way my blood clots. <\/p>\n\n\n\n I can read the right studies and ask the right questions and ask for the right tests and the right medication. And by that I mean: I can control the way my blood clots. No?<\/p>\n\n\n\n Once my imagination seizes danger, I gallop toward a solution. <\/p>\n\n\n\n In my house I have a metal door jammer, a panic button, a radon detector, a propane detector, an alarm system. I can\u2019t control whether an attacker or toxin infiltrates my house\/body, but I can control how guilty I feel if something goes wrong. If I lock and jam my door and set the alarm and plug in the radon detector and something bad happens, I can forgive myself. If I read medical studies and get blood tests and talk to nurses and doctors and something bad happens, I can forgive myself. The problem with this logic is its perversion.<\/p>\n\n\n\n The system that tries to protect me assails me. <\/p>\n\n\n\n I\u2019m afraid I\u2019ll die if I have this surgery.<\/p>\n\n\n\n I\u2019m afraid I\u2019ll die if I don\u2019t have this surgery.<\/p>\n\n\n\n I don\u2019t have a panic button for the panic I create. <\/p>\n\n\n\n The system that tries to protect me assails me.<\/p><\/blockquote><\/figure>\n\n\n\n I am the hydra: I cut down one head, turn around, and there I am.<\/p>\n\n\n\n Three days before the surgery, I walk along cliffs. <\/p>\n\n\n\n The sea is choppy.<\/p>\n\n\n\n Clouds coagulate; within days an atmospheric river will run through the coast. <\/p>\n\n\n\n These currents of air can be over 1,000 miles long, 400 miles wide, more than two miles deep. <\/p>\n\n\n\n My phone buzzes with flood, wind, and landslide alerts. <\/p>\n\n\n\n My father calls.<\/p>\n\n\n\n \u201cI want your right breast in a jar,\u201d he says.<\/p>\n\n\n\n \u201cShould I get it preserved in formaldehyde?\u201d <\/p>\n\n\n\n \u201cAbsolutely not. I don\u2019t want the tissue to shrivel. I want it to grow arms.\u201d <\/p>\n\n\n\n \u201cAnd where will you put my breast? Next to Tom\u00e1s?\u201d<\/p>\n\n\n\n Tom\u00e1s is his human skull, a found relic from his childhood.<\/p>\n\n\n\n We laugh.<\/p>\n\n\n\n We talk about the river, my missing organs, my weird blood.<\/p>\n\n\n\n Along with my spleen went my gallbladder; several years before that, my appendix, minor meats. My appendix almost burst after the first time I visited my father, Michael, in the United States. <\/p>\n\n\n\n Cambridge, 2001, Christmas. Rain, slush, snow, Moulin Rouge<\/em>. I\u2019d just turned nine. Before this, Michael and I had only spent time in Madrid or in the south of Spain, once or twice a year. His girlfriend, Hilary, paid for many of his flights to see me, even though she\u2019d never met me in person.<\/p>\n\n\n\n I liked her immediately. We walked around Central Square, baked salted chocolate chip cookies, and chatted. She was writing her first book, which I thought was the coolest thing in the world. I also loved the precise way she and Michael assembled dinner every night, a choreography they\u2019d learned together in culinary school. This was the first time I stepped into my father\u2019s life. He introduced me to his rituals, Iron Chef<\/em>, Terminator<\/em>, good knives, duck fat, pickled beets, and salmon grilled on charcoal. After nine days I returned to Madrid; two days later a surgeon rolled me into the operating room. <\/p>\n\n\n\n \u201cApendicitis aguda gangrenosa,\u201d she said, after. <\/p>\n\n\n\n Aguda, acute, sharp. <\/p>\n\n\n\n Madrid, 2005, Christmas, again. <\/p>\n\n\n\n Four years after my appendectomy, Michael flew to Spain for my splenectomy; my mother left our apartment so he could stay with me the week before. On sunny days we wandered through outdoor markets that sold items for nativity tableaus: tiny angels, goats, sheep, barrels of hay, myrrh. On rainy days we watched movies. <\/p>\n\n\n\n On our fifth night I wanted a burger from a place called Foster\u2019s Hollywood<\/em>.<\/p>\n\n\n\n Michael said no. <\/p>\n\n\n\n Anger prickled me. <\/p>\n\n\n\n \u201cI\u2019m about to be cut open. Just give me what I want.\u201d<\/p>\n\n\n\n He said no. <\/p>\n\n\n\n Later, he knocked on my door. In his hand was a blue ceramic plate with a burger. He\u2019d bought the bun from a bakery, mixed and spiced the organic meat, frosted it with thick flecks of sea salt, and caramelized the onions.<\/p>\n\n\n\n \u201cI barely used any oil,\u201d he said, \u201cso this shouldn\u2019t hurt you at all.\u201d <\/p>\n\n\n\n I devoured it.<\/p>\n\n\n\n The thing about only seeing each other once or twice a year was that our time together was all text, no subtext. We talked about concrete objects: movies, books, food; we didn\u2019t have nonverbal shorthand accumulated in shared space. I don\u2019t remember talking about how sick I felt. I imagine my mother may have told him that greasy food, from Foster\u2019s Hollywood <\/em>in particular, made me curl up in bathtubs, knees to chest in hot water, and pant with pain. <\/p>\n\n\n\n By the time it was clear my spleen had to come out, I\u2019d lost count of how many times my mother had to drive me to the emergency room after I ate something oily. For years I\u2019d tried to control my diet to control the pain. I subsisted on bland things until I caved and reached for chips or cheeses or burgers that hurt with ferocity. My doctors couldn\u2019t figure out the problem; they accused my mother of having Munchausen\u2019s syndrome by proxy. I\u2019m not sure what was more disorienting: the pain, or watching medical professionals mistreat the person who brought me peppermint tea and lavender bath balls and demanded they take me seriously.<\/p>\n\n\n\n Eventually, as a result of my mother\u2019s rigor, the right doctor ordered the right test and confirmed my gallbladder was atrophied. Up until I started writing this, I thought my awful stomachaches were unrelated to my weird blood. But a quick Google search reveals that people with spherocytosis often have gallstones. The chronic destruction of red blood cells releases too much bilirubin, which then crystallizes into sediments. I\u2019m not sure why it took my doctors seven years to solve something the internet told me in seconds. But right after I turned 13, they decided to excise my troubles. Once I was two organs lighter, I\u2019d be able to run, swim, dance, study, eat oil. <\/p>\n\n\n\n \u201cTe vas a re-encontrar,\u201d the surgeon said. <\/p>\n\n\n\n You\u2019re going to find yourself again.<\/p>\n\n\n\n As if there was an authentic self I\u2019d lost.<\/p>\n\n\n\n On the day of the surgery, while my mother imagined my body, Michael helped my grandmother with her Hebrew. My mother didn\u2019t understand how my father could distract himself at a time like this; my father didn\u2019t understand how my mother could not. As I came to, the wind whined and my parents shouted. I dipped in and out of consciousness, and by the time I could see again, they were gone. When I ask Michael why they put me in the intensive care unit, he says he doesn\u2019t remember. <\/p>\n\n\n\n What I remember most from the ICU is a little boy who I believe died in the bed next to mine. The sound of his anguish was desbocado, des-boca, un-mouthed. To be a body in pain so close to a body in so much more pain left me between shock and high octane fear.<\/p>\n\n\n\n
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