In 2009, Sandra Allen's uncle sent her a typewritten manuscript of his life story in ALL CAPS. Bob had been living alone in a trailer in Northern California for years, was diagnosed as a paranoid schizophrenic, and his text, suffice to say, was not an easy read. But Allen was transfixed. In her compelling debut, she deconstructs Bob's angry yet earnest telling of his life story, from his young adulthood in the Bay Area as an aspiring musician to his own recollections of repeated institutionalization and treatment. Allen adds in historical, medical and family context and her own lovely prose (she received a graduate degree in creative writing while she undertook this project), but she still allows a most unreliable narrator to tell his own story (with spelling errors and all). "A Kind of Mirraculas Paradise: A True Story about Schizophrenia" is both a bracing work of art and a loving tribute to a man whose voice, no matter how unpolished, deserves to be heard.
How did you know that your uncle’s story and your interpretation of his manuscript would be your first book?
I worked on this project for sevenish years. I didn't know it was a book for the first five. That wasn't what I was thinking about. I was mostly just engaging with the manuscript that my uncle had sent me and working on turning it into something else. I never thought it was possible that anyone would want this as a book. This whole last couple of years of the project have surprised me as much as anything else.
The challenge that Bob sent to me, in not only understanding what he wrote, but then getting his story out into the world, everything I do —still — is making good on my part of this.
You call your book a cover version rather than a translation of your uncle’s manuscript. Why is that?
My story takes this raw material that my uncle sent me — his life story that he typed in all capital letters on his typewriter. He was living alone in the desert for a long time, so it was not necessarily something that other people who didn't know him seemed to be willing to engage with. I was figuring out, how can I make this something that people will care about? Because my finding, when I was reading his story for the first time, was "Wow, my whole head had been changed." I wanted to bring more people into that. Fortunately I've got this skill set. I'm a writer. I know how to create prose that people enjoy, or at least was learning to at the time.
The metaphor of a cover version appeals to me because I think translation is not a great word for my interpretation of his text — we didn't literally speak different languages. I like the idea of a cover because Bob was a rock musician and so much of the book is about music. If there's one thing my uncle and I have in common it's that we're both artists. I saw this as an artistic engagement with him, akin to one musician covering another musician's song. A really good cover, like Jimi [Hendrix] covering the national anthem at Woodstock, gives the song a whole other flair. It adds to what the song itself is. So when I was trying to come up with a metaphor for what I was trying to do creatively vis-à-vis Bob's book, I thought, "That's it. I am putting my own spin on what he said, and adding something to his work that is my creative style."
How did you figure out the logistics of turning this text into your own cover version? How much research on mental illness did you do?
The book contains two threads that each have their own fonts: There's the cover of Bob's story, which comprises the bulk of material in the book, and that's what I spent the first five years writing. My interest wasn't in writing a book about schizophrenia or anything bigger. I was frankly intimidated by the topic. I did enough reading to know that it was really complicated, but at that point, my interest was mostly Bob. I stuck as close as I could to his story.
When the project became more serious from a publishing standpoint, I had already been trying to get smarter about the topic. But I knew the stakes had risen with this kind of publication — with a major publisher and a subtitle that had the word "schizophrenia" in it. So I spent the last couple of years focusing on the second element of the text that pops in and out, which is in my own voice. And it's where I add in family context and historical context about Berkeley in the '60s and '70s, or about psychiatric history and medical context — what's known and what's not known about the category of schizophrenia.
That second element took two years. I worked as hard as I could and was motivated by the terror of getting something wrong. I read everything I could, and I interviewed anyone who I thought might have perspective on this. I spent a lot of time talking to people and reading texts that conflicted with each other. Because people have very strongly held beliefs. I was trying to get a sense of what is the full picture of the debate and also how can I animate the debate to my reader. I wanted to give this information because over time, it became clear that readers wanted more than just Bob's story. It was an opportunity to talk to my reader — whoever that may be. It could be someone who's already informed about these topics or not. And I identify with that latter reader because I had been ignorant about schizophrenia before my uncle sent me his manuscript. Reading Bob's book is what set me on the path, and so I had to learn a lot, and then I had to figure out what I wanted to say in the book, and make sure whatever I was adding didn't distract from the story. I didn't want to mess up the original.
Tell me a little more about the debates about schizophrenia. What are the issues you were (and are) grappling with?
Schizophrenia is a psychiatric diagnosis that's been around for about a century. It's a descriptive diagnosis — it's something that a psychiatrist would observe in a patient and based on certain set of criteria, would then determine if the patient has schizophrenia. Psychiatric diagnoses like schizophrenia are hypotheses. There's a debate about whether it's a valid category, whether schizophrenia refers to something different within the body of someone given that diagnosis than someone who isn't. Is there something going on in terms of the chemistry of their brain or their genetics? Or could we see something on a brain scan?
The answer right now is they don't know. It's an open debate. But what is clear is that the label "schizophrenic" is a very real thing with social consequences. If a doctor tells you you're schizophrenic, then you believe things about your own body and brain, or your own future and what you can become in life. Bob's book was very much written in order to make the point that he had been labeled a psychotic paranoid schizophrenic. I realized that Bob was one of so many people who have been in the position of receiving that diagnosis and said, "Wait a minute — what is it you've told me that I am?"
In publishing this book, I'm hoping to bring more people into the conversation of the status of these kinds of diagnoses, and thinking through whether this is the most productive way to help someone who might receive such a diagnosis. I want to bring readers into this conversation without necessarily saying one side is wrong and one side is right. Because ultimately, this fight has been going on for a long time. What surprised me when I started to become more invested in my uncle's story is that I had never even heard of this debate. The bigger gap is between those who are aware of the questions around schizophrenia, and the general public, who I think probably believe that schizophrenia is a disease that's physically as real as diabetes.
Is there a prescriptive takeaway from this book, from a policy standpoint, or is it enough that we begin to ask the right questions?
People like my uncle should be involved in discussions about their care and their treatment. In my experience, folks who have experienced what we may call "madness" or psychic distress or who've heard voices or seen visions actually have a lot to say about how we might best provide mental-health care and what it should consist of. Folks who've been in the traditional mental-health care system can really teach us a lot about what helps, what doesn't help, and what actively might make things worse. This is a really key point: We've gotta listen to Bob and people like him. Right now, the systems that we have actively exclude people like my uncle from being heard on topics like their own lives, their own bodies, what happens to them and what the rest of us consider them to be. The more we can elevate the voices of people who've experienced this first hand, the better. They have a lot to tell us. What might allow a person who's had a life-interrupting event to then recover and go on to live a life that still has dignity? What things in our current mental-health system are preventing those who have been diagnosed with psychiatric illnesses from going on to live full and dignified lives?
How is your extended family dealing with the publication of your book?
Bob was a hermit who nonetheless stayed in really good touch with many members of our family. He didn't ask anyone's permission to write down the story of his life, which obviously includes so much of their lives. I had to figure out how to make everyone in the family feel OK with me going forward with this book. It was complicated. We will see how everyone will feel. My guess, right now, is that it's a tough topic for some people, and it's very painful. But on the other hand, are there people in my family who are thrilled that I was able to find a publisher who wants to publish my book based on something Bob wrote? Yeah. There are people in my family who, for a long time, have wanted the world to better understand Bob and people like him. They see my project as the continuation of the work my uncle started in advocating for himself.
My hope is that folks who knew Bob will be heartened to see him in this light and also to see his own work doing good in the world. Because that was his goal, and that's my goal.