Notes for the Everlost

by Kate Inglis

  Even now, ten years later, I have looked at Ben and imagined a boy just like him but with half his brain missing, wheelchair bound and seizing, blind and unable to talk, wearing a lifelong diaper, subjected to lifelong interventions and pain. And I’m all mixed up. I am against his death. I am on the same side as his death. We lost him twice: the boy he might have been and the boy he would have been. No angle on it is fair.

  I miss you

  I’m sorry

  I’m sorry my body did that to you

  I’m sorry I couldn’t keep you safe

  God, the guilt for the mothers with phantom babies. For a long time, it was relentless. I could never explain it to the people in my life. Why do you torture yourself? You didn’t do anything wrong. Don’t be ridiculous, they would say, because it hurt them to see me claiming fault. My head knew it was ridiculous, of course. TTTS was a random sniper. Everything is a random sniper. But sorry and sorrow are nearly identical twins.

  In fitful sleep, knowing the autopsy results were coming, I had imagined the worst: We were wrong. He didn’t have hydrocephalus and the bleed was correcting itself and you wouldn’t have had to suction out his airway every day and we told you he was dying on life support but as it turns out, his lungs weren’t collapsing after all.

  Oops.

  We left the NICU. As I turned the corner I saw a young clinician at the end of the hallway, walking away from me. I recognized her as the one who had put a stethoscope to my son’s heart and declared him gone. She had a cup of coffee in one hand and a bagged lunch in the other and seemed in a hurry. She pushed backward through a set of double doors. Shaken, I pressed my nose to the top of Ben’s head.

  That place is my Afghanistan.

  * * *

  “Mommy, where is the other baby, the baby like Ben?”

  “That was Liam, sweets.”

  “Is he in the hospital? Can I see him?”

  “He’s your spirit brother and he lives with the stars and in your heart.”

  “I don’t have a heart. I’m a big boy.”

  “You do, goose. You are a big, beautiful boy with a big, beautiful heart. Liam watches you all the time and when he does, he’s with you right there in your heart.”

  “But I don’t see him. Why can’t I see him?”

  “Because he was a sick baby, and he couldn’t stay with us, so he went up to the stars where they made him all better.”

  “Mommy, sometimes I can’t remember Liam.”

  “Oh sweetie, that’s okay. Daddy and I will help you remember him.”

  “What is Daddy going to dream about tonight?”

  “Mountains. Big mountains with snowy peaks and black bears all dripping with blueberry juice.”

  “What are you going to dream about tonight?”

  “Fishopia, a place where fish walk around on the land and people swim around in the water and the fish come out in boats to try to catch us but we’re all too quick.”

  “What am I going to dream about tonight?”

  “Monkeys on a Ferris wheel.”

  “What is Ben going to dream about tonight?”

  “Umm…let me see. How about…friendly tugboats?”

  “No, Mommy. Ben is going to dream about dump trucks.”

  “Oh. Okay.”

  “What is Liam going to dream about tonight?”

  “You, sweets. Liam dreams about you.”

  CHAPTER FOUR

  In the Care of a Buggered Psyche

  On starting, slowly, to recover in bits and pieces in the years that follow as loss obscures in the distance.

  IN PSYCHOLOGY, the psyche is the totality of the conscious and unconscious human mind. From Socrates: “My friend, care for your psyche. Know thyself, for once we know ourselves, we may learn how to care for ourselves.”

  Synonyms for buggered:

  Broken: fucked, kaput, stuffed

  In trouble: fucked, in for it

  Tired: done in, exhausted

  * * *

  Our future selves of forty, fifty, or sixty years old whisper at us to make us weary of the present so we’ll step forward to create what they know is next. But when you get weary of grief—or when that daily drowning, choking, depressive grief gets weary of you—it doesn’t look like weariness. It looks like rosy cheeks.

  One day you’ll remember and you’ll say, without collapsing: I love you, baby. And you’ll sense a nod back. Maybe not from your baby but from the sky, the trees, the wind. They approve of the way you tip your hat. Then you carry on to a nice walk, a hunk of rising dough, a day of labor or lovemaking or weeds to pull. Grief loosens its grip. Intermittently at first, a vigor or hunger or need for something else occurs to you. Your body or mind says FEED ME. You rise and stir up a cloud of dust—ashes—little magnetized flecks that say There was a fire here. They cling for a while. Then they catch breezes, one by one, until you almost don’t notice your skin is just your skin again.

  * * *

  The Latin convalēscere means “to regain health.” When someone has been severely hurt or very ill, they must go through a period of convalescence during which they rest and recuperate in order to regain their strength and health. Synonyms: recovery, recuperation. See also: Lysis (recuperation in which the symptoms of an acute disease gradually subside); rally (a marked recovery of strength or spirits during an illness); healing (the natural process by which the body repairs itself).

  —Wikipedia

  I don’t think we rally, and I don’t think we heal. Feeling better can’t be muscled into being. It’s lysis. You wait. It subsides. It’s got little to do with heavy lifting, unless you count patience with oneself as heavy lifting. I remember wishing I could disappear for a while or make everyone else disappear for a while. I wanted to convalesce, perhaps for longer than I’d care to admit, but for good reason. My world was stacked to the horizon with the most oppressive mass of oblivious bullet dodgers.

  My own house was safe territory. Ben grew, the doctors weighing his progress to the gram every week. And Evan did a lot of lovely shouting about little trains. They were both in need of simple but constant attention, and the giving of it was a medicine for me. But every other kid in the world—all of them comically enlarged like linebackers, with rolls upon rolls of full-term pudge—would send me ducking for cover. For a long time after, I couldn’t be close to any others. I was afraid of them. They were the uncompromised fruit of neighboring wombs, all uneventfully fat cheeks and snotty noses. For a while, their existence felt like proof that parenthood chugs along uneventfully for 99 percent of the rest of the world, landing normal babies upon normal parents in normal ways. Not that you’d want it any different. But I’d see Alison at the market on a Saturday morning: gigantic, glorious, about to pop. I would flinch with dread. The next Saturday I’d see her again, her baby wrapped up in something stylish, everybody oohing and aahing at the soft little head peeking out from inside her jean jacket as she stood with a tomato plant on her hip.

  Every ordinary birth in spitting distance made the straw I’d drawn feel that much shorter. Then I’d feel like a jerk, as though I’d been wishing for someone—anyone—to join me at the bottom of this well in the interest of company. Then I’d feel like a jerk for winding up at the bottom of a well. Stupid body. Then I’d feel like a jerk for feeling sorry for myself when I had fresh German bread, two living sons, universal healthcare, my mom’s always warm-and-steaming cookie tin, my dad’s hammer, and a dining room with a window seat looking out over the creek. Endless jerk potential.

  The mother in me—wiser, gentler, more patient—would whisper into the ear of the upset kid in me.

  Shush. Feel what you feel but make sure you get some of that nice goat cheese. Then go home and make a pot of strong tea and mow the lawn.

  From our bunkers, the bereaved spy on intact people covetously th
rough slivers of blackout cloth, mystified, muttering prayers and profanities. We call on every possible iteration of self to mediate, reconcile, rationalize. Sometimes it works. Sometimes it doesn’t.

  One of my babies died. One of them lived. I felt isolated among the usual people, humbled among the bereaved. Ben is my subsequent baby and my shadow baby. He filled my arms, calling for me between midnight and dawn for contraband giggles, drinking my milk like a dog with a bone as I sobbed.

  * * *

  The free spirit again draws near to life—slowly, to be sure, almost reluctantly, almost mistrustfully. It again grows warmer about her, yellower as it were; warm breezes of all kind blow across her. It seems to her as if his eyes are only now open to what is close at hand. She is astonished and sits silent: where had she been? These close and closest things: how changed they seem! What bloom and magic they have acquired!

  …They are the most grateful animals in the world, also the most modest, these convalescents and lizards again half-turned towards life. There are some among them who allow no day to pass without hanging a little song of praise on the hem of its departing robe. And to speak seriously: to become sick in the manner of these free spirits, to remain sick for a long time and then, slowly, slowly, to become healthy…by which I mean “healthier,” is a fundamental cure for all pessimism.

  —FRIEDRICH NIETZSCHE, Human, All Too Human

  Me and Nietzsche sit with a plate of sticky toffee pudding and shoot the shit about free spirit, mistrust, warm breezes, bloom and magic, half-turned lizards, pessimism, and little songs of praise.

  “Did you know the word lysis also has a biochemical definition?” I say across the table. “It means the destruction or dissolution of cells by the action of a disrupter.”

  “Neat,” says Nietzsche.

  At the same time, destruction plus gradual subsiding. An explosion and dissolution of self—we have drawn the shortest straw—the sum effect of which, for a while, is a touch of haughtiness, to put it bluntly. With abuse or loss or sickness or assault or deception or an aversion to loving ourselves or an aversion to others loving us or your spouse goes to work and never comes home or any crap combination of some or all of the above, we grow a taut string of gristle down the spine. With every event it grows stronger. No matter how sensible you are, there’s a period during which, against your will, you’ll perceive others to be less violated than you, like a rubber mallet on that soft bit of knee. This is the reflex of your destruction. You are completely, utterly clueless. The “you” is them, her, him—an “other.”

  It is true. That apparently less violated person is completely, utterly clueless. She looks at you and might think the exact same thing for a reason you can’t discern. You are both correct. Someday, you’ll see it, and it will soften you. This is your subsiding.

  * * *

  All you need to do is trust your body! Your body knows what to do. You can will the birth you want into being. You just have to want it. Do it and be a better mother, a bigger woman. Do it and be a warrior.

  For a while, every gathering of women—cocktails, showers, sex toy parties, message boards—featured a round of birth-story gore. In rooms filled with moms of kids under the age of three, the urge to pass around hospital tales was just as strong as the urge to pass around sleep advice. The well-intentioned “manifest your power” camp plus well-intentioned doulas in training who fetishized birth as the peak of self-actualization amounted to a vice. For me, as the mother of a dead baby, the conversational crush sucked. Forceps, ruinous forceps! Mostly, I found every possible reason to refill my drink. But every now and then, I’d fantasize swinging the story of Liam—of us—like a bat.

  Seriously, knock it off. You are fine. Your kid is fine.

  Meanwhile, social media was a daily feed of performative pride.

  My wife is AMAZING! My wife is STRONG. My wife knows and trusts her body. And so for her—for us—everything went according to plan. #AMAZING #STRONG

  Congrats, dude. Crapshoot for the win.

  Some people fixate on birth not only as a counter to patriarchy but as a manifestation of female goddessness. That’s great, but only if everything goes to plan. Having experienced a traumatic outcome, I felt compelled to reclaim the randomness of messy birth like feminists once reclaimed the word bitch. In both cases, we work to shrug at something that would otherwise claim power over us. Shrugging is important. It defuses the violation’s ability to make you smaller.

  Now and then, because I’d burst if I didn’t, I said so. It never went well.

  How can you think less of birth—it says so much about who we are, intoned the birth-goddesses.

  Only if by “thinking less of birth,” you mean that I reject the notion of relying on a crapshoot to confirm or deliver my sense of myself.

  You think less of birth just because your baby died.

  Yes, “just” because my baby died.

  How sad, that you are so shut down from this most important event.

  What’s most important to you is no longer most important to me. Labor is one day in a life full of thousands of days.

  But your birth is the most important event in shaping your life as a mother.

  It’s not my birth. It’s my kid’s birth. I am a supporting character, not the protagonist. And the day of their birth doesn’t shape my life as a mother. Every day after that day does, whether I am lucky enough to take them home or not.

  Your birth is the most important event in shaping your life as a mother, they said. And now, to paraphrase the “or else”: So you’d better make it beautiful and serene and victorious and on your terms. Because if it gets screwed upside down and sideways, you will be forever marked as having been robbed—and your baby, too, who will never forgive you for not being more inspiring and less, you know, unconscious.

  Those inclined to birthwork want to keep the delivery of babies as serene and as natural as possible. And that’s great. Yes, there’s unnecessary medicalization. Yes, we want to feel like we’ve got some degree of autonomy on the day we push. The problem arises when birth becomes a pivot point for self-esteem. Birth can’t be controlled, promised, unfailingly protected, or made reliably transcendent. It can be nudged along and prepared for, well supported and informed. But sometimes—a lot of the time—even safely delivered, ordinary birth is a gong show. When that happens, we owe it to ourselves to shrug at the mechanics, be thankful it’s not 1887, and hope for better luck next time.

  I didn’t need a rugby pile-on of birth idealists calling me a warrior in the spirit of sorority. Good intentions aside, the wildly overstated significance some heap onto birth is a weight that doesn’t make everyone feel empowered and guttural. It makes some people feel anxious, pressured, damaged, and disappointed.

  I was not a warrior in the operating room. I was a warrior in the pumping room. I know others who are warriors in living without the experience of motherhood after loss, but who have made beautiful lives and new discoveries nonetheless. And others who were warriors the day they stopped taking birth control, working up the nerve to try again despite the terror. My womanhood is not defined or compromised by one day. Neither is anyone else’s.

  Scrub in to a neonatal intensive care unit. Tell me and other bereaved parents and parents of children in peril that the mechanics of delivery are the most important thing. Tell them the catastrophic birth of their children—their loss of control—forever marks them and renders their babies (if their babies survive) poorly bonded. Would you?

  Does our experience of birth matter that much, given everything else that makes us into lovers, friends, creators, nurturers? Is birth the everything? Or just one thing?

  Words shape interpretation. People anoint bodies in hospital beds with words like “fighter” and “miracle” because of our yearning to believe we can affect our fate and the fates of our loved ones, wrapping up the narrative of formative life even
ts with neat bows. But in doing so, they silently demote everyone else who dies, screams for an epidural, or falls apart at the incubator of a one-pound child. We do not exist or fail to exist—or birth “well” or “poorly”—because some manifest it and some do not. This is why SHIT HAPPENS is such a popular T-shirt.

  * * *

  I would have these episodes—PTSD-riddled conversations around birth were a big one, either participated in or endured in silence—and I’d have to take a moment. The pounding chest, the tears swelling up and threatening to overrun my face, outing me as the mess I feared I was. I’d duck into a hallway, wash my face in a bathroom, disappear to the kitchen until it was over. Either way, I would see nothing but the only certain social prognosis: broken, fucked, kaput, stuffed. My psyche felt buggered to the horizon, endlessly. I was incapable of keeping mixed company.

  Until I was not.

  * * *

  A little about that thing they call “depression.”

  One morning I sat up in bed and looked around and realized I couldn’t see much of the floor. Clean clothes and dirty clothes, mine and theirs, tossed in heaps. My groggy head absorbed this and then imagined what I knew of the other bedroom, the teeny tiny hallway, the kids’ room, the stairs, the kitchen, the living room, the woodstove, and the dining room, all littered with discarded remnants of play and streaks of red marker and half-eaten croissants and torn books and crumpled pipe cleaners and runaway peas. Even out to the street, lining the driveway, a tangle of weeds had taken over. They knew someone was living here but she wasn’t paying attention, and there’s no better place to be if you’re a snarly opportunist than the home of a Sad Person.