by Kate Inglis
Shambhala Publications, Inc.
4720 Walnut Street
Boulder, Colorado 80301
www.shambhala.com
© 2018 by Kate Inglis
Every attempt has been made by the publisher to secure the appropriate permissions for materials reproduced in this book. Any omissions brought to our attention will be remedied in future editions.
All rights reserved. No part of this book may be reproduced in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the publisher.
Ebook design adapted from printed book design by Gopa & Ted2, Inc.
Cover illustration by Nicolaas Bakker
Cover design & lettering by Kathleen Lynch/Black Kat Design
Library of Congress Cataloging-in-Publication Data
Names: Inglis, Kate, 1973– author.
Title: Notes for the everlost: a field guide to grief/Kate Inglis.
Description: First edition. | Boulder: Shambhala, 2018.
Identifiers: LCCN 2017028622 |
ISBN 9781611805505 (paperback: alkaline paper)
eISBN 9780834841383
Subjects: LCSH: Inglis, Kate, 1973– | Parental grief. | Premature Infants—Death. | Twins—Death. | Mother and child. | Motherhood—Psychological aspects. | Mothers—Canada—Biography. | Women authors, Canadian—Biography.
Classification: LCC BF575.G7 I54 2018 | DDC 155.6/463—dc23
LC record available at https://lccn.loc.gov/2017028622
v5.3.2
a
For bereaved parents
and for all those who find themselves here too, in what feels like an everlost: this state, sentence, riddle, dream. It is indelible until it fades, softly. That is what this book is about, with the grief of infant loss serving as the container to contemplate life, after.
I do not propose to write an ode to dejection, but to brag as lustily as chanticleer in the morning, standing on his roost, if only to wake my neighbors up.
—HENRY DAVID THOREAU, Walden
Contents
Introduction
1. The Immediate Protocol
2. As Much as I Can Remember
3. What Now
4. In the Care of a Buggered Psyche
5. Hello, Flotilla
6. At the Mercy of the Bootstraps Barbershop Chorus
7. A Chat with Death
8. Anniversaries
9. Dog Paddling in #Truth
10. An Imagination Sandwich with Religious Wonder Bread Whether You Ordered It or Not
11. Nothingness and All There Is
12. Womangood
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Introduction
CHARLIE CHAPLIN tiptoes inside the cage of a sleeping lion. Oh, precarious life! Always danger, always little daisies. Circus tightropes, gold rush bears, fire-swallowers. We love the underdog because we like that even those who wouldn’t think themselves capable (you, me, the everyman clown) can waggle ass at terror.
What happened to us in a neonatal intensive care unit grew into something fantastic. Not wonderful-fantastic, but mythical-fantastic. Circus-fantastic. Before the NICU, there’d been nothing to overcome. I had never been hungry, sick, punched, or abandoned. The sum total of my experience to that point had been cold milk and warm cookies. My losses had been reasonable, death only ever coming round to grandparents after many long and loving years.
An uneventful life is a designation you can only appreciate in hindsight.
In the middle of the night in my twenty-seventh week of pregnancy, an ER team sprinted down a hallway pushing me on a gurney. The wheels wobbled and squeaked as the doctors shouted ahead, crashing through double doors, and the fluorescent lights on the ceiling blurred together like cards in spinning bicycle spokes. Two babies were in my belly, and my belly had failed. The doctors lifted them out of me, each son weighing two pounds. A few hours later, in shock, I was wheeled into a room full of tubes, machines, and humans in peril.
INGLIS, BABY A. I saw an alien, purple and swollen, his legs splayed open, his body lifeless. A ventilator and medical tape blocked his face. I saw disaster.
INGLIS, BABY B. I saw a hairless kitten with legs the girth of his father’s thumb. (Look at your thumb.) Pale skin hung off his bones as though it were two sizes too big. He was small—too small.
I saw lions and bears. I saw fire. I saw Liam and Ben.
* * *
One of them died. I will explain.
* * *
I could write a book about what happened and what came after, but instead I am watching Beverly Hills Cop III on Netflix. It is 3:00 a.m., years later. I am sitting in my empty house—empty for now—slouched down with my hair stuffed up under a woolly hat, a screen hot on my lap. I am covered in Norton Juster’s Lethargians, the small gray creatures from The Phantom Tollbooth. They yawn and fawn, all of them a thick gray and gooey dough small enough to curl up by the dozens in earlobes and dangle from fingers and make everything so, so heavy.
The Lethargians found me, a new and delicious host, sometime in the empty space after my baby died, after everything fell apart. They’ve been here ever since, off and on, a slowly diminishing population. Eddie Murphy runs in high-waisted pants, his gun drawn. There’s nothing the Lethargians love more than Beverly Hills Cop III on Netflix.
* * *
Exquisite pain makes you hungry for transcendence, that first spirit high you chase in vain forevermore like a junkie. This is the great deception of heroin, they say. You will never again—may you hope to never again—get that close to the thin membrane between this world and whatever else is beyond it. If you chase it, you sink. Other bereaved people and allies say We won’t forget and You’re doing great, but maybe it’s the not-forgetting that’s landed me with Eddie Murphy at 3:00 a.m.
That’s why it’s hard to write a book. Experts write books. Enlightened people write books. You don’t write a book during the fall, before you’ve got everything sorted. Only after. But I’ve been falling for years, scrambling up again, sorting out in fits and spurts, freshly sorted reasonings collapsing in on themselves to make space for new wrack. I worry any mandate of mine is fresh paint on rotten wood.
Fine. That’s where all the power is, mine and yours. In shouting THIS SUCKS, totally unreconciled, and hearing another voice that’s not just an echo of your own. If I squint, I can see a little wave from way over there. It’s you. You’re no less rattled than I am, but there you are, roasting squash and gutting sheds and yanking weeds to make space for things that might grow. I wave back.
* * *
What happened was a crash C-section, two-pound twins born three months too soon by frantic incision and chest compressions. Heart surgery, brain surgery, morphine like a battleground. Two months later, we walked through sliding doors to fresh air and grass, away from antiseptic and toward a Cheerio-riddled floor. We were outside, finally, carrying one sibling brother and a baby boy (the one who survived), the second of two or three, depending on how you count.
* * *
It was one of those Saturdays when the crowd on the waterfront bumps you around a bit. A blue sky, a warm breeze. Tall ships by the museum and ice cream cones.
It was our second day out of the hospital, his first day outdoors. At two months old, Ben weighed less than five pounds. Wrapped up against me, he wasn’t much more than a mini football with half the air let out, the top of his head a long way from peeking out over the top of the mei tai. I shook like a leaf. What if he stopped breathing? What if I
joggled him, bent him, lifted him wrong? What if something happened, something deep inside him that the alarms might have picked up? We were out and untethered without the usual assurance of twenty nurses.
A passerby stumbled, looking at me, at us, and elbowed her friend.
“That’s not a real baby,” she hissed, as they both gaped. “That’s a doll. That woman is crazy!”
They disappeared through the crowd shaking their heads. I considered catching up, making them look. I wanted to tell them he had almost died, that his twin was gone. I can hardly believe it either, I wanted to say. I wanted to show her, shock her. I still do.
I didn’t. The moment passed.
* * *
In my dreams, the NICU room is dark and tidy with tight corners, like a theater stage after everyone has gone home.
They took out his ventilator, and I screamed at everyone to get out. It took twelve hours for Liam and I to let go of each other. Twelve hours and then I spoke aloud to nobody: Please. The air filled up with a < ? >, and I said Please take care of my baby and hands reached under and lifted him. The hands didn’t belong to god. They felt older than that. They were gritty and thick with good clean muck, trailing seaweed, fluttering with moth wings.
I drive by the concrete box of the hospital from time to time. It makes me shudder. I wonder if I left anything behind: socks, skin cells, a ghost.
* * *
The hole in me is patched up with cheesecloth, coagulated trauma, and German butter dumplings from The Joy of Cooking.
* * *
Screw this story. I don’t want this story. Why me, why us?
I throw it down and pick it up again. It’s a battered thing but there it is, persistently, this story. I am bereaved. For the rest of my life I’ve got to drive around in this crashed car, this body, this disaster, and it’s full of spilled blood and guts as much as the intact one—the Volkswagen people can see—is full of fossilized french fries and junk mail. This story grows new heads, multiplication plus subtraction followed by division. People walked a circle around it, looking at twisted metal with a hand on their chin.
People who look are better than people who don’t.
* * *
Days from his own death in 1847, Henry Lyte wrote what’s arguably the most famous hymn ever put on paper:
Swift to its close ebbs out life’s little day
Earth’s joys grow dim; its glories pass away
Change and decay in all around I see
Friend who changest not, abide with me.
Friends who abide show up. They don’t rush you through pain. They don’t use guilt or shame, intentionally or otherwise. They don’t try to fix or lecture. They don’t start a single sentence with the words at least…(you can try again / you already have a kid / you have your health). Friends like that are a power higher than what you’ll find in any holy place. Family can choose to be your friend like that. Friends can choose to be your family like that. They can be one in the same.
* * *
This book is about you, not me. It reads like I still can’t drive past the hospital without holding my breath or Stick it, peanut gallery of faux-concerned onlookers, I never needed you. But it’s about your story through the lens of mine. When you share a pot of strong black tea with someone who has carried the same kind of loss, you affirm your intent to (1) pay attention to the rationalizations, instincts, or passing thoughts that feel like they belong and (2) reclaim power back from the bad luck and bullshit that keeps you feeling crippled. This book is a mirror. You, me—all of us—are going to be alright, someday, somehow. If you don’t feel like that’s possible in this moment, it’s okay. Where you are right now is normal and rooted in the most ancient sort of love. You are not alone in it.
You might be here days after or years after. Either way, at one volume or another, some variation of the following has been, for a time, on continuous loop:
What the hell happened? Why? Why us?
What the hell, god?
How can I accept a completely unacceptable loss?
Why bother caring for myself when I couldn’t care for my baby?
Why don’t I ever want to be myself again?
Will I ever be myself again?
Will I always feel so alone? So cursed and forgotten and unheard and dismissed? So prickly and black humored and repeatedly collapsing? So stuck at the bottom of this well? What am I supposed to do with this life? My baby is gone. I am gone.
The answers:
I don’t know.
[A cricket cricks.]
You can’t. Until you do.
Because.
Because.
Sort of.
I’m going to put the kettle on.
CHAPTER ONE
The Immediate Protocol
A distant acquaintance called me the morning after her baby was found not breathing. I don’t know anyone else who’s been through this, she sobbed. I don’t know how to live anymore. This is what I said to her then, and in our conversations since.
MATURITY TEACHES US to pause before offering opinion, even if we think we’ll be helpful. Especially then. Humility is in not telling other people what to do but in supporting others as they determine what they should do for themselves.
I’m not going to be humble right now. I have been to the same place, and I’d like to share with you some things I wish someone had shared with me. It might be helpful, if you’re a short time from your loss.
1. Don’t apologize.
It’s foolish to the point of reckless to be sorry for stepping on a land mine. Stop it. Don’t apologize for being sad. Don’t apologize for reaching for the memory and substance of a baby who barely—or never—drew breath. Don’t apologize for speaking to the dead. Don’t apologize for no longer fitting into the ideal. Don’t apologize for subjecting everyone who loves you to worry. They worry because they care. Don’t apologize for making other people uncomfortable with the fact that you’ve just gotten the lower half of your body blown off. I’m sorry. I’m a bloody mess. I’m so sorry.
Stop it.
2. Call upon your imagination to deal with dragons.
Honor all the snarling dogs, mouthless faces, and circling sharks that swarm in your head. They’re trying to tell you something. Listen. They are your story trying to find its shape, and they all flail a bit when they’re so new. Rilke said: “Perhaps all the dragons in our lives are princesses who are only waiting to see us act, just once, with beauty and courage. Perhaps everything that frightens us is, in its deepest essence, something helpless that wants our love.”
Your dragons want you to remember how significant we all are, and how insignificant we all are. They are not against you. Consider them differently. They bring a heat that will become the core of some of the very best of you. Don’t turn away. They’re made of love. They reflect how badly we need to give and receive it. Imagination helps.
3. Forgive.
Some acquaintance in a grocery store lineup will say I can relate. My dog died last year.
A moment of big-eyeballed silence right now, seriously, for all the dead dogs.
Buff up your gallows humor. Share it with others who have had to endure the grocery store too. And the Thanksgiving tables, bridal showers, airport check-ins. Then forgive people for not knowing what to say, for filling the vacuum with every wrong thing. The quicker you realize most humans are artless thugs when faced with someone else’s grief, the quicker you’ll get over it when you meet one.
It’s easy to forgive the random jerks. It’s a lot harder to forgive friends and family who turned away from you. Or worse yet, who turned toward you to tell you to get over it, brushing your sadness off as a pregnancy gone awry. People may throw their own baggage and unresolved demons at you, trying to solve themselves by solving you. People may say Stop making everyone uncomfortab
le. They are uncomfortable because they are afraid. Forgive fear. Or at least, choose not to eat those rotten apples.
4. Know you don’t have to be whole to be normal.
By the time you’re an adult, you’re rare if you have any less than three or four sizable chunks gnawed off your body, mind, or soul by one trauma or another. An apparently whole-looking person is not a wizard. They are a con man hiding behind a velvet curtain. Wholeness is something to prize only if you care most about the superficial. Let go of it and revel in plentiful company.
Every one of your emotions, outbursts, or lapses in social grace is 100 percent normal. In this extraordinary loss, you are ordinary. This is good. Your rage is normal. Your speechlessness is normal. Your running-off-at-the-mouth is normal. Your inability to know what you need is normal. Your difficulty occupying the same body that let you down—that’s normal. Your falling out with faith—that’s normal too.
A couple of years after my baby died, I pulled my car to the side of the road, suddenly struck with the sound of Liam gulping for breath. I was shaking so badly I couldn’t drive. I leaned out the open door and almost threw up in a commuter parking lot. Years later my brain still hosts moving slideshows of Ben, Liam’s surviving twin, dying in increasingly ridiculous ways. A hungry shark at Freda’s Beach! A live grapeshot cannonball hidden in the grass at the old British garrison! A broken buckle, and he falls out of a roller coaster car! He is swallowed by a hippo. He is wearing safari beige and has a camera around his neck. He is crushed in the hippo’s esophagus. I see his eyes close and his face go down. The hippo coughs up the camera and swims away. I scream at the hippo, begging him to eat me too. He disappears beneath the water.