Photo credit: Robert Dubbin
I was recently tasked with writing a list of books I’d recommend to people “about schizophrenia.” It makes sense that this is what I was asked; I’ve got a book coming out soon and right across its cover it says: “A true story about schizophrenia.” I worked on the project for eight years. For the first five I didn’t think of it as a book, and it didn’t have that subtitle. The subtitle came after I got a book contract. My publisher felt — understandably — that the word “schizophrenia” had to be on the cover. That people interested in reading a book about this topic would only know this was the book for them if that word was right there.
The book is based on something my uncle Bob mailed to me back in 2009: the story of his life, typewritten in all capital letters on 60 pages. On a cover page, he wrote that it was a “true story” about being “labeled a psychotic paranoid schizophrenic.” At 16, as a teenager in Berkeley in the early 1970s, Bob had been driven to a mental hospital, locked in a cell, and injected with Thorazine, events that changed his life irrevocably.
When Bob first mailed me his life story I didn’t know much, if anything, about schizophrenia. I walked down to the library and began checking out books on the topic. I eventually began working on a piece of writing based on what my uncle mailed me, my version of his story. The more I read about schizophrenia, however, the less I felt I understood about it. I was annoyed that I couldn’t even spell "schizophrenia" reliably. My fingers would trip and I’d frown at my typos. I’d practice it slowly like a tap dancer practices a difficult step: schizophrenia, schizophrenia, schizophrenia. I practiced another tricky word I found myself encountering more often: psychiatry, psychiatry, psychiatry.
Then, three years ago, I found a publisher for the project, and afterwards quit my job to focus on finishing it, guessing incorrectly that it’d take only another six months to a year. I bought books about schizophrenia and books about psychiatry. I read them on the sofa, and read them in the tub, and read them in bed. Books about mental illness. Books about madness. Books about psychiatric history. Books about anti-psychiatric activism. Sometimes books arrived I didn’t remember ordering. I ripped open padded envelopes briefly excited about what I’d received, and it was books.
I ran out of space on our bookshelves and so I set up an old white Ikea bookshelf on a wall by the kitchen table. It was missing a few screws and leaned to the side. I began shelving my madness books there. The more books I added, the more it leaned. My partner hated the shelf, often eyeing it and complaining that it was going to fall on someone.
The more I learned, the less I understood about schizophrenia. Each new book seemed to only further complicate matters, to cast doubt on things I’d thought were certain. Instead of approaching some greater clarity, I seemed only to better understand the vast topography of my ignorance. Different books would illuminate territories that I’d not even known I didn’t know anything about.
The white shelf grew full and leaned precariously. My partner bought a bracket and anchored it to the wall. Sometimes people passing by would brush the shelf and the whole thing would sway like a drunk at last call. My partner would cringe and I repeated to him that it wasn’t going to fall, especially given this great new bracket. Our apartment had two rooms and I didn’t know where else to put them. And it was useful, I found, to stand in front of the books, to consider them all together, to think about them as a chorus — their contradictions notwithstanding. Sometimes standing in front of the shelf, I thought about how on the nose that’d be, if it did fall, if I died beneath a pile of books about madness. That the shelf was a metaphor was probably why I fought to keep it that way.
The shelf was the metaphor for the problem of my ever-expanding sense of cluelessness about a topic I was supposedly on the hook for a book about, and one I wanted to write about well and fully and truthfully. It's rare that the general public cares to listen at all to a story about schizophrenia, so I wanted to make the most of the opportunity. I wanted to speak especially to people as ignorant as I’d been before Bob sent me his life story.
Instead of approaching some greater clarity, I seemed only to better understand the vast topography of my ignorance.
I filed a draft and my editors sent it back, and I filed another and they sent it back. For nearly two years we went on like this, ripping apart and reconstructing and ripping apart again. I bought books and I bought books. I ran out of room on the madness shelf and began stacking books on top of it, and this my partner really didn’t like.
Last spring, as the manuscript finally approached something that felt final, I sent it to people who knew way more than I do about schizophrenia. Some had themselves been diagnosed with schizophrenia. Some were close to people who had been diagnosed. Some worked with people diagnosed with schizophrenia in a professional capacity.
I awaited their responses, sick with worry. They sent kind words, mostly. Some sent critiques of specific choices I’d made. I had hired two fact-checkers as well. I’d write my editors, ask them to let to me adjust one passage or another. They’d caution me to not touch too much. I’d traipse about in the manuscript like a toddler allowed to walk through a mansion full of fresh paint.
Passing the bloated madness shelf I felt shame, shame about the books I’d not yet read. I wondered which ones I should have gotten to. I pictured later regretting that I’d not known one fact or another.
On July 4, I proofread the manuscript a final time, in one sitting. I wept on and off. I wept because that day, the mood I was in, I only saw the final product’s imperfections, all the ways in which I might have done better. I also wept because I knew I’d never again feel so much control over this thing.
It was done. My part at least. I nonetheless continued to buy books about schizophrenia. I continued reading them. I continued asking people who might have perspective to lend whether they'd have time for an interview. I wasn’t exactly sure why I was doing these things. It wasn’t like I could fix the book if I realized something I'd gotten wrong. But it wasn’t about the book. This book about my uncle, I saw now, didn’t need to say everything about schizophrenia or madness or anything else. It wasn’t an end, I understood, but a beginning.
The madness shelf never did topple. We moved in August. I packed the books into boxes. With great joy, my partner yanked the shelf from the wall and took it down to the trash. I admit I also felt relief.
Our new house is old. I use a bedroom as an office and there are bookshelves in a space at one end where a closet once was. I put the madness books on the top shelf in a long row. The ceiling is slanted so taller titles have to go on the left of the room and shorter ones on the right. Shelving them all was a careful game of Tetris I played up on a small ladder, books scraping across the ceiling. Standing back, the top halves of the madness books appear cut off. They almost look like they could go upward forever, and that, as a new visual metaphor for this work, feels fitting.
As I sat down to write a list recommending some titles about schizophrenia, I decided to go through all of the madness books. I walked them downstairs in stacks. I sat by the wood stove, cracking title after title.
Some I had already read and now revisited with slightly wiser eyes. Many I’d not yet properly gotten to. Some were not what I expected. Some were brilliant. Some forgettable. Some contained fresh mysteries, leads I’ll now want to follow, other books to find. I made piles, piles that grew and wobbled.
Today, my therapist asked if I feel pride about this accomplishment, looking back on these 8 years, now that the book is finally being published. I answered honestly that I’m not inclined to think that way. My brain tends to focus on whatever I’ve bungled, whatever book I skipped reading, and how possibly grave an error that was.
But while I’m not sure pride is what I feel, I do feel uplifted. I feel uplifted, for example, that I emerged from the project not depleted but energized. That there are stories to chase still, things to try to better understand. I used to feel ashamed of my ignorance; lately, I’ve felt it gives me strength. How motivating, the great horizon of all I do not know and the people I’ve not yet spoken with, and all the books I’m still burning to read.
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received an MFA from the University of Iowa's Nonfiction Writing Program. A former BuzzFeed features editor, she also cofounded the online literary magazine Wag's Revue. She lives in upstate New York. A Kind of Mirraculas Paradise: A True Story About Schizophrenia
is her first book.