Not dying, my mother chides me. A controlled dying, then. A momentary dying. She

Transcription

1 We re All Okay A Nonfiction Essay by Sierra Freeman Down the hall, my brother is dying. Not dying, my mother chides me. A controlled dying, then. A momentary dying. She stops trying to argue with me. She knows that I need to fear the worst in order to accept anything less. So, during the seventh hour of my brother s surgery, I will say that he is dying. They moved us to this waiting room, even though there is one within the surgery ward. They are the unreachable, vague higher ups of this hospital: doctors, administrators, nurses anyone who has the resigned face of seeing death more than I have a fact I do not forget when I watch the staff walk up and down the hallways. They look at home here in their orthopedic shoes while the rest of us came in whatever clothes we got the call in. This new waiting room that my family is in is 57 steps farther away from the surgery ward and you have to call to get in, which is why we were moved here we kept asking too many questions. Is he okay, is he going to be okay, is the surgery going okay? Maybe they were just tired of the same sentence, rearranged. We want to know, is he going to be... When Jaycob and I were born, we were born together. It was a premature birth, my mom s water breaking more than a month early. It turned out to be both good and bad because although no one knew it yet, Jaycob s umbilical cord was wrapped around his neck. Even though it s impossible, I like to imagine that I was gently pushing him out to get help from my separate amniotic sac. I was nudging him down to get someone s attention: Hey! Look at us! He needs you. I weighed four pounds, and Jaycob, three. Both of our weights combined we made one normal, healthy infant. People used to joke that I was stealing his food, that I was the bully, at 1

2 least while we were in utero. For those brief eight months before we were even born, while we formed the strangest Yin and Yang with only each other, in the dark, it would seem that I was in charge. As we would find out very quickly, this could not be further from the truth. It became apparent he was the true leader; first born, first to run up to strangers, first to run head first at obstacles just to see what would happen. He would be the first to learn to swim, and the first to save me from drowning. I avoided learning anything about Jaycob s surgery. I didn t want to know what they did, what tools they used, or how long it took. That way, there was no chance of imagining the worst. The good and the bad remain equally nebulous as I count the hours in the waiting room. This happy, ignorance inflicted bliss is ruptured when a well intentioned volunteer hands me a pamphlet with the intimate details of the surgery inside. I don t want to offend her and so I take the pamphlet back to my seat. It s only moments before I feel the anxiety rising in my chest. Open heart surgery, as it turns out, is particularly grueling. There s the radial saw, yes, but I didn t know that there is a ventilator tube pushed down the patient s throat so that their breathing can be artificially controlled. I didn t know that all the body s blood gets redirected through a machine so that the heart can worked on without the blood passing through it. I didn t know that Jaycob s body has become a shell kept living only by the assistance of machines. When Jaycob saved me from drowning we were at our cousins pool. Our cousins were a rambunctious group of kids not unlike Jaycob. I bonded more with Skyler, a girl a few years younger than us who had Down s Syndrome. She was an excellent swimmer but I was not. She liked to ride on my back as I scooted around the shallow end. Just before we had to get out of the pool, I ventured into the deep end. Although the darker, hazier pool bottom made me nervous I 2

3 was excited to be among the other kids. And then Skyler s arms were around me, attempting to play our game, but not realizing she was twice my size and that I couldn t touch the bottom. My head sank beneath the water, while hers stayed afloat. I was a human buoy but sinking fast. I was drowning. I thrashed, but she had her legs around my hips. I could hear her laughing above me. I surfaced once, and saw Jaycob staring at us from the pool edge. He was horrified. I surfaced again, and saw him dive. I didn t come up again but I watched through the chlorinated water as he threw Skyler off of me and pulled me to the side. I pick up the phone outside the double doors and dial the nurses number. I know it by heart. Hi, yes, it s me again. Yes, I understand. But do you know if he is going to be oh, okay. They won t buzz me in. I wish emotions were like that too. Hello, fear would like to be let in. No, not right now. Anger wouldn t get in either, or despair, and definitely not hopelessness. Never hopelessness. Not today, thank you. Down the hall, doctors are cutting into my brother s chest with a radial saw, pulling apart each side of what used to be a whole sternum like cracking open a book. Down the hall, they are taking out his heart. Don t worry, not all the way out, my mother laughs nervously. She s single handedly keeping Kleenex in business today. Not all the way out, she repeats to herself. Jaycob s aorta is the problem in fact, it s both of our problems. At some point back when we were still in the womb, before we insisted on coming out too early, our DNA turned against us. Somewhere on each of our Fibrillin 1 genes, a malfunctioning set of instructions told miniscule proteins to weave together to become eyes and ears and tiny s shaped spinal cords. Our hearts were building themselves incorrectly, with aortas too big and too weak for our bodies. This is how I explain it to people My heart is too big for my body. It s much more complicated than this, but they seem to like the hidden tenderness in the statement. The small 3

4 conciliatory sound of an oversimplified diagnosis comforts them. Aww, they respond. It sounds lovely, in a way, that my heart is simply a little too large. I don t tell them about the side effects of my condition: thin skin that breaks and bruises like tissue paper, doctors visits since I was born, pokes and prods and research and blood, so much blood. A mean death rate of 26.1 years if there s no major intervention. I don t tell them about the time in junior high I was hit in the chest with a volleyball. After it rebounded off my chest I believed that I would be dead by the end of the day so I wrote a note explaining what had happened to my parents and tucked it into the bra I didn t need for the paramedics to find. I especially don t tell people that ask about my condition that in two months, only a week after I graduate from Stanford, I will have the same radial saw bearing down into my own chest as a preventative measure against a heart attack at the ripe age of 22. Our mom has had the same surgery done before as well, back when it was still in the experimental phases. She should feel better about my brother s odds; she survived, so of course he will. But none of that matters. She would do the surgery over again for him, if she could. She has always felt guilty about passing on this syndrome to each of her children. She also passed on some unfortunate psychiatric issues, but we tend not to talk about these. We re a family of fighters, not of feelers. I didn t seek out help for the depression until my senior year in college, a few months before Jaycob s surgery. A resident sat in front of me, pen at the ready. I was one of the first patients she d ever had. We were so close in age that if we d met anywhere else, I would want to be friends with her; She had thick, curly hair that I was immediately jealous of. What can I help you with? she asked. Where was I supposed to start? I told her about the panic attacks I d begun having. How many a week? One a day, minimum, I said. 4

5 What sets them off? Anything and everything. How do I cope? I thought this was a trick question. I don t, I said. They started me on Lexapro immediately. Understandably, they didn t like that I was having suicidal ideation. I had talked to Jaycob about this briefly. Why was our family so prone to thoughts of suicide? I had figured it was because we didn t like dealing with health issues that would never be cured. I had known since I was a child that we were fragile; we didn t have that shield of immortality that every other child seemed to have as they ran and fought and feared nothing. We had always feared something. That has to take a toll on a person, doesn t it? But Jaycob shook his head. It s not that, he said. To anyone else he appeared calm. Content, even. But his chin trembled the tiniest bit. No one is supposed to live with this disease. If this were still the survival of the fittest, we would have died off years ago. I think about the c section that saved our lives, and the heart monitors that we wore when we were babies that kept our parents up at night with their sporadic beeping. I nod and squeeze Jaycob s shoulder, the highest part of him I can reach. Our brain knows it s not supposed to be alive, he said. A nurse comes out of the double doors dressed in operation scrubs. I look her over for a spot of blood, some tell tale sign she might have missed during clean up, anything to hint that something s gone wrong, but I don t see any. My mother and I jump up in unison. It s one of the only times we ve ever been in sync. Is he I start to ask. He s fine, the nurse interrupts. He s in the ICU now, you can see him in half an hour. But he probably won t know you re there. 5

6 This is where she s wrong. He ll always know where I am. I don t mean that in a quaint, emotional way, like when we tell our children that their dead dog will always be in their hearts. He has always known where I am. We take care of each other. When we were four years old, in preschool, a woman from the state came to Head Start to do an informal assessment of Jaycob and me, something to give back to the state and put into a report on single parent households. She talked to Jaycob first while we were on the playground. He was on the monkey bars and didn t have time for her. How old are you, Jaycob? she asked. I m four. He got to one side of the monkey bars. She wrote this down. I like Power Rangers but I don t like the white one because one times he goes bad but he s not all the way bad he just goes bad for one episode... The woman liked this monologue. She nodded and wrote some more. Then she turned to me. I was playing in the sand near Jaycob. What about you? What s your name? Jaycob jumped down from the monkey bars. That s Sierra, except he pronounced it See ra. The woman smiled politely. Sierra, how old are you? She s four too! Jaycob yelled happily. The woman frowned. Sierra. She got in my face. How are you today? I didn t like this woman. I looked up at Jaycob. He grinned down at her. She s fi ine, he chimed in a singsong voice. I went back to playing. Years later, I find copies of the reports in my dad s file cabinet. Male twin is expressive and intelligent. Active. Female twin quiet. Needs to learn to speak on her own. 6

7 When I finally get to go into his room in the ICU, Jaycob looks like he s been pumped full of water. His whole body, which has always been skin and bones, looks plump, and not in a healthy way. His eyes are closed and a thick tube snakes down his throat. I begin to cry silently and can t stop, even though I try. This isn t my role here, I m not supposed to be on this side of the comforting. I feel his hand curl around mine, and I look to see that his eyes are still closed, but he s awake enough to begin struggling against the foreign object shoved down his airway. His thumb draws weak circles around the back of my hand. Are you...? I falter, but he nods anyway, understanding my question. We ll all be okay. 7