I Was in a Coma and No One Will Tell Me What Happened

This is a story of memory and the loss of it, of terror and some joy, and of something that happened that was supposedly so awful that they gave me memory blockers to ensure I forgot it. Thus, only my loved ones who lived through it remembered—and none of them wanted to talk about it. Not with me, not with each other. But if they didn’t, then how could I process this thing—this thing that had happened to me, but I couldn’t remember happening to me? And if I couldn’t process it, how would I heal and make sense of it?

I am a writer. So, the answer for me is, I write.

So let me first tell you what I do know, what I do remember: The day after giving birth to a perfect, gorgeous son, I’m in the shower, when I notice I look even more pregnant than I did before giving birth. I tap my belly. It’s hard. When I show my doctor, he brushes away my concern—this physical proof in my belly—as though I imagined it. “You had a c-section,” he reminds me. “It might just be a little blood clot.” The word “little” reassures me. He tells me we’re going to clear it up, that I’ll be home with my baby before I know it.

I remember going downstairs in an elevator, laying on a gurney, the anesthesiologist taking my hand… Five, four, three, two, one… dark. And that’s the moment that splits my life into before and after, because shortly after that I am put into a medically induced coma for three weeks and given memory blockers so I won’t remember anything.

But I remember this: waking, like I am stumbling. I don’t know where I am, but everything is in black and white. There’s a laugh track, like I am on TV, and I suddenly know: This is like The Matrix and my other life was a lie. This is real life and I am part of a show and I cannot move or speak and two people in business suits come in the room. Are they lovers? Producers? They look at me, casually, like I am not there, and then they look at the wall, so I do, too. There is a window, high-rise buildings outside, and on the wall is a huge blown up photo of my son, Max, and underneath, in my husband’s handwriting, it says, GET WELL MOMMY. WE MISS YOU.

I feel the panic rising, and then one of the people comes over to me and abruptly, I sink back down into the dark, even as the laugh track rises.

This is what the movies tell you about comas: that the sound of your faithful dog Bob can wake you up from coma. That if people talk to you, you will hear it somehow, it will be a tether that can pull you up from the ether and back into the real world. That the smell of your favorite just baked cookies will alert your senses, just like a bell: Wake up! Wake up! Welcome back to our whole new world!

None of that happened to me.

This is also what movies and books can tell you about comas: that when you wake, you might have lost some brain function. Also, you might have a different personality. Or new skills. A woman wakes and can speak perfect Mandarin, and two weeks later, she quits her job and moves to China to be a translator. A man who couldn’t find Middle C on the piano if you paid him wakes and is a virtuoso and soon is playing concert halls. There is a famous story of a man who was sure he was the actor Matthew McConaughey. He kept waiting for his agent to call, and it was only after six months that he grudgingly admitted that even though he still knew he was the actor, the world felt different. None of that happened to me, either.

Instead, the only movie part was waking, and suddenly there were colors instead of the black and white, but I still thought I was in the TV show because there were doctors all around me, asking quietly, “Do you know where you are? Do you know what day it is? Do you know what’s happened to you?” And that was when I heard it again, the laugh track.

When I lifted up the sheet and saw that the sound was really long compression tubes on my legs so I wouldn’t develop clots. That, too, was when I saw all the stitches and scars traveling across my body. “You were in coma,” a doctor says, “we had to do five emergency operations,” and I shut my eyes.

I don’t remember any of it. Doctors come in and talk to me, they tell me that when they took me down to get rid of what they thought was a tiny blood clot from the C-section, it was like that scene from The Shining, all that blood pouring out of the Overlook Hotel elevator. They tell me no one knew what to do, that as soon as they opened me up to let the blood out, more filled up my body. I was screaming in pain, they said. I was getting so sick that no one in the hospital thought I would survive. My hematocrit, which should be 34, was 7. And that was when they decided to do two things: to put me in a medical coma so they could figure out what to do and to give me memory blockers so I wouldn’t remember the pain.

I wanted the details—every detail!—so that I could piece back together my time in the coma just as surely as the doctors had pieced my body back together. “What’s wrong with me?” I asked the staff.

The doctors told me the medical facts, how while I was in coma, a German hematologist who was about to retire thought she knew what it might be, a blood disorder so rare it could be one in 10 million. She thought it was a protein gone awry after the pregnancy, a Factor VIII inhibitor that stopped all the blood in my body from clotting. The surgeries, she said, had probably made it worse, but a special, expensive test had shown that was exactly what it was. Now they were giving me hundreds of transfusions of Factor VIII, human, then porcine, then manufactured. They were gluing my veins shut and dripping in morphine so I was always hallucinating, and there were so many meds to take, I lost count.

Awake, I was told to move, but not too much because I might start a bleed. I couldn’t see my baby because they didn’t know what I had and maybe I could give it to him.

Doctors were coming in every day, all of them arguing, and there was so much morphine that I began to believe that the doctors had killed my husband and son and that was why they weren’t letting them come in. I believed other things, too. That Madonna was a patient and came in the room. That the hospital was putting on a musical, singing so loudly I couldn’t sleep. That the hospital was a sex experiment and I was shouting, “I cannot participate! I’m sick!”

When the doctors brought me out of the coma, my friends and family refused to talk about it. They were happy to talk about the present, how much better I was getting. My husband brought in an hour-long video of our baby’s first days. The nurses, goddesses, lent us their break room so I could sit there and weep, watching my son get his first bath, his first visit, his first walk. Thank you, I cried, thank you.

My friends came to visit, bringing me lipstick and books and gossip about people we both knew. But as soon as I asked about what it had been like when I was in coma, everyone went quiet. I kept begging for their memories so that they could be my surrogate memory, and then I could regain my understanding of what had happened in the time when I was alive, but not conscious.

But my people didn’t want to tell me. My friend Nancy cried, so I stopped asking. My mother seemed to age a thousand years when I asked. She looked away and bit her lip and tried not to cry. I finally grabbed my sister and demanded that she tell me. “Do you really want to know?” my sister asked and when I said, yeah, I really did, she said only that my neck was thick as a football players’ and then she didn’t want to talk anymore. She changed the subject, while I lay there, picturing a tree-trunk thick neck sitting atop my scraggly shoulders grown soft from lying in a hospital bed for weeks.

Could I have pressed? Sure, I could, except that I couldn’t bear to see the shock in their faces, the tears they’d wipe away. I didn’t want to be the cause of any more of their suffering—hadn’t I made them worry enough? So, I figured, well then, I could ask the doctors, who were used to this.

Except that when I asked the doctors, my hematologists, my surgeons, the anesthesiologists, the gastroenterologists, the things they told me always were more about them—how they had been the ones to save my life. “I’ve been in your belly five times!” one surgeon crowed. And I placed my hands on my stitched-up belly, the belly that had held my son for 40 weeks, and wondered what he had seen in there.

Every doctor had a different skill they wanted to talk about, from why gluing my veins shut surgically was a genius idea to how expertly they had diagnosed and discovered a new bleed in my hip. They argued over whether my bleeding was new blood or old, while I lay there in my hospital bed, more and more upset, my body feeling more and more alien to me, its owner, its inhibitor, its driver. What had happened to me? What had they done? What had I done?

Gradually, post-coma, the morphine dose went down. I began to recognize the room, the doctors, what was going on. The IVs were removed and I had to relearn to walk, to eat (what is more delicious than the first chilly bite of lime Jell-O?)  And then, finally, finally, I was allowed to go home, to be with my baby, my husband. Everyone was happy, the nurses hugged me, and Jeff and I thought, this nightmare is over.

Except that it wasn’t. The body’s recovery is very different than the mind’s.

I slowly grew stronger, walked longer, and religiously visited doctors every other day, all three of us trooping into the hospital where everyone knew us. My hair fell out and then grew back, curlier and thicker. My body puffed out from steroids so that all I could fit into was a muumuu that was four sizes bigger than what I usually wore, and then it went back to normal.

I’m so lucky, I’m so lucky. That was my refrain as I curled against my husband at night, as I sang to my son.

“I never want to think about the hospital again,” I told Jeff. I began to be able to go to all of my doctors less and less, though it took a full year, and even then, I stopped seeing the hematologist against his wishes, because everyone was too sick in the waiting room, because I no longer wanted to be that person.

But I still was.

Years pass and my regular physician told me I could get my body fixed now if I wanted. What I had won’t come back most likely, not unless I got cancer or had a transfusion. But suddenly, it was important to me not to fix my torso, because these scars, these were my tangible reality from my coma, these were my signals, my proof, my guidepost: Something happened to you. And you survived it. But there were other, deeper scars, I couldn’t figure out how to heal.

One day, while we were in the supermarket, I saw a package of dried soup and I began to break into a cold sweat. My hands were shaking, and dizzy. I had to stop walking. “What’s wrong?” Jeff said alarmed, and I showed him the soup, confused, not understanding my reaction. Then he quietly told me, “That was the only soup you’d eat in the hospital.”

More things began happening. Smells would set me off into panic. Seeing a certain striped pattern, which turned out to be the stripe of my hospital curtains, made me want to weep. Certain music tracks, the ones Nancy had played for me, panicked me, too.

“You probably have PTSD,” my friend Peter, a therapist told me. “And because you can’t remember, you need to write about it, so you can.” So I wrote, articles that got buzz, a novel, Coming Back to Me, about a woman in a coma who remembered nothing. But I didn’t feel better because that woman wasn’t me. “Write what you want,” Peter told me. “The brain doesn’t know the difference. It will process it as real.”

I began to wonder, who are the keepers of my own memory? And what if their memory isn’t exact? What happens when you can’t control what has happened to you? When you can’t even remember?

I started to write another novel, about another coma. “Really, you want to write about coma again?” my agent asked. “I think I need to,” I told her. But I knew this was different, because I wasn’t writing about me anymore. This time I was going to write about a woman whose experience was the opposite of mine, who remembered everything, even during the coma, and who changed radically when she came out in ways that I hadn’t.

So I did what I always do when starting a novel: I researched so I could journey with this woman in a coma totally unlike mine. Neurology researcher Joseph Clark, a friend, told me that when you go into a coma, the brain changes. Neurons fire, synapses light up like illuminated Christmas trees. You can become a new person. And I created Stella. Stella was awake through her coma because I wanted someone, anyone, to experience what I had and remember it, so I could process it.

Stella was aware but not frightened. When she woke, she remembered, and she was someone brand new, with a new talent. Unlike me, Stella didn’t panic about going to sleep at night, terrified that she might go back into a coma. She yearned for her dreams, for her rest. Because she was the keeper of her own memories, her own counsel, she knew she was in control.

My change was physical, but for Stella it was something deeper, something more emotional and so profound that it not only changed her but also changed all the people around her that she loved. And it made her life—and theirs—better. And when I finished—really finished writing that novel—I felt different finally about my coma because I had reexperienced it in a new way.

When I turned in my novel, I thought about asking New York University Medical Center for my records. I was finally ready to look at them, to discover more facts I might need. What if a doctor had made a mistake? What if there was a procedure I didn’t know about? But then the hospital needed the names and dates of every doctor—all 30 of them—of every procedure, things that had happened years and years ago. For a year-long illness, a three-month hospital stay, it would be hundreds and hundreds of pages. Did I want to do that? Would it cause more trauma? I decided that it would, I made peace with it, and I let it go.

John Irving talks about always being able to walk past the danger of the open windows. Obsessions he says, don’t go away. You can’t hide them into a corner. Instead, they seek you out. I didn’t and couldn’t let go of my trauma. But Stella, a woman as unlike me as anyone could be, did. And in the end, creating her, writing her experience, made all the difference for me. In the end, that was what healed me.

—Caroline Leavitt is the New York Times bestselling author of 12 novels, her latest, With or Without You, will be published Aug. 4 by Algonquin Books, along with the 10th anniversary edition of her novel Pictures of You.  www.carolineleavitt.com