Cotard’s delusion & fiction.

mental health & illness


To say, “I am living with Cotard’s delusion,” is a sort of oxymoron; to say, “I am living as a dead person,” makes little sense. And yet the idea of being dead, and of believing that I am dead as firmly as I once believed that I was alive, has burrowed into my mind like a parasite.

I have only seen one pop culture reference to Cotard’s delusion, named as such because of the doctor who first documented it in detail. A young woman turns out to be the killer in Episode 10, titled “Buffet Froid,” of Hannibal. It’s Dr. Hannibal who introduces Cotard’s to the protagonist of the show, and therefore the audience: “Have you considered Cotard’s syndrome? It’s a rare delusional disorder in which a person believes that he or she is dead… Even those closest to them seem like impostors.” The woman, named Georgia, has suffered from Cotard’s syndrome for years, and tore the face off of one of her victims to presumably see what was beneath. At some point, when Will encounters her, he shouts, probably unhelpfully, “You’re alive!”

Cotard’s delusion is closely related to Capgras delusion, which I have experienced multiple times over the last seven years. Both are rare. Both affect the same region of the brain. The person afflicted with the delusion is unable to process faces in an emotional manner; it is thought that this lack of ability to process therefore leads to a conclusion — with Capgras, that the person’s loved ones have been replaced by doubles (“invasion of the body-snatchers” and “reverse zombie syndrome” are two pop-journalism, unsubtle references to low-grade horror that have little to do with the actual horror of either of these delusions), and in Cotard’s, that the person is herself dead.


I love books. I have ever since I can remember being conscious. I have especially loved fiction.

In the depths of psychosis, my ability to discern what is real and what is not wavers. This makes fiction tricky.

My therapist had, in the past, suggested that I avoid it. This, after reading a novel about boarding school and horse riding had me confused. I thought my parents were wealthy and lived in upstate New York. I thought that I was a prodigy with horses.

But to exist without books is a terrible way for me to exist. At times I read nonfiction, which is hard on even my more functional days. I end up raging at the author who exhorts me to look past my past or work hard or pursue my deepest dream. This, I feel, is much easier to do when one’s mind has not become a scramble of delusion, a mind that even in better circumstances can shatter into catatonic psychosis under the weight of, say, viewing a single art exhibition at the Legion of Honor, or having a thirty-minute conversation. This is especially galling when I have always worked hard. I have always pursued my deepest dreams, in one way or another. My nature is to be ambitious, to be industrious. It has only been recently that the factory chose to stall.

So nonfiction, especially of the personal development, writerly, or business variety, can pull me under. So can books about overcoming grief, or living through loss, or stories of triumph. The problem that I have can’t be talked through or thought through or meditated through. The problem exists in my own terrible master — in my Self.

Recently I have been listening to the Gilead audiobook. I decided that if I had to choose a reality to be confused in, the reality of John Ames would be a pretty beautiful substitute.

I do find myself lost in the book. Another issue of language: “lost in a book.” This is not a pretty metaphor. I become lost in the book. The world of Gilead is no more or less real than my own world. The world of a film, any film, is simply a full world that I don’t know how to get to. Either I don’t have the directions, or it’s too out of the way — but I would not be any more surprised to exit my studio and find myself in a church, being preached at by Marilynne Robinson’s John Ames, than in the hallway, which is no more or less real to me than my dreams.

This process of discerning what is, or is not, safe to watch or read is an endless one. Science fiction, as it turns out, or anything that challenges reality beyond its understood boundaries, such as Marisha Pessl’s Night Film, is to be avoided.


Language is my backbone. I have said this over and over, but it’s more than a pretty turn of phrase. I use language, and in particular, writing, in order to reconstruct the world that I once understood so easily, and so well; I write about my experience of Cotard’s, and of illness in general, in order to help others who may experience similar things, and similarly feel confused or despairing; I do advocacy work because I want to help others who have never experienced similar things to understand that I am a person — a kind, generally cheerful, and funny person — who has an illness that causes even the most open-minded people to think of me as a foreign object, and generally one to be feared.

I do this for myself. I do this for others who can’t do it for themselves. I do it for you — with great tenderness, and with love.





P.S. Hannah of Becoming Who You Are interviewed me for Episode 51 of her podcast. We talked about Radical Sincerity, among other delicious things. Check out Becoming Who You Are, and my interview, here.  If you haven’t managed to get your hands on your own copy of Radical Sincerity yet, I highly recommend that you hop on over here. (I hear that it’s “beautifully written, soulfully articulated, and refreshingly honest.”) Hurrah.

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The Care & Keeping of Esmé (& of You)

compassion & care, mental health & illness

For whatever reason, it was this most recent episode of illness that prompted me to create a book. The book is written in a notebook (from invite.L, my favorite seller of stationery, if you’re a stationery geek like me), and has been informally dubbed The Care and Keeping of Esmé. Should you, too, have a chronic mental illness, I invite you to create one for yourself. Here are some of the things that are being recorded in The Care and Keeping. If you should have any suggestions, feel free to leave them in the comments.

  1. A grocery shopping list. This might sound bizarre, but my acupuncturist has recommended certain foods for me, both for my schizoaffective disorder and for my fibromyalgia. But in general, it is easy to slide into a not-eating state of mind, or an eating-too-much-crap state of mind. Creating a grocery shopping list when well encourages me to remember what is actually good for me to eat. (And that I need to eat.)
  2. Basic, basic recipes. Brown rice plus tuna fish plus lemon juice. Okay.
  3. Nourishment activities. I have a page that details for me how to get to the ocean. I have a terrible sense of direction and don’t drive, so I made extensive instructions about taking public transit to the shore. You might not love the ocean; maybe you love the zoo, or have a forest that you like to go to.
  4. Nourishment activities, continued. These are the things that help alleviate the anguish/psychosis/mania/etc. You might need different lists for different types of episodes, as I do. I have included things like “using Headspace” (a simple, but lovely meditation app), “drinking ginger tea,” and “Skyping with Mum.” Having a tangible list of activities helps to at least remind me that I can attempt to not go straight for alcohol or self-injurious behavior, or any of my other long-standing, but unpleasant, coping mechanisms.
  5. Lists of signs of oncoming episodes. I didn’t realize until I stopped craving the taste of alcohol after my yearlong episode of depression ended that “craving alcohol daily” was a symptom, or that making a million lists and obsessively tidying was a sign of oncoming psychosis. Yours may or may not vary.
  6. A list of resources. This may include your best friends, your family, your doctors, a crisis line, your local clinic, etc.

I hope that was helpful. Again, if you have any more suggestions, leave them in the comments. And if you think this might be helpful for someone you know, feel free to send them the link; tweet the link if you feel like it might be nice. ( Be well, all of you. I wish you all the very, very best.

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Am I Human: An Interview with Jessalyn Wakefield

art of writing, mental health & illness

Image of JW taken from Am I Human.

Spring is all I can think about. Weather. The light. How it feels in the nasal passages. Many books. Many thousands of words. Others. My own. Mostly quiet. Maybe too quiet. Humming to open my throat. journal, tumblr

NOTE: This post contains images which may be NSFW, depending on what kind of work you do.

Jessalyn Wakefield is magical — fierce — stunning — a storm of a woman. I met her at an aquarium. All around us: otters, silver fish, black-eyed sharks. I find it perfectly fitting that we met amidst water (my element), because Jessalyn has wound her way into my life in a profound way; she inspires me regularly, and I’m thrilled to have her work here, as well as a Q&A. Thank you, Jessalyn, for being here.

As you will discover on her web space, Am I Human, Jessalyn is a writer, photographer, performer, bookmaker, printer, and great thinker.

Q. Do you see links between mental illness and religion? How does this influence your prose, your style of writing and performing, what you choose to write about?

A. The position that the mentally ill are prophets, or conduits for divinity, or are inherently more spiritually attuned than other people is disturbing to me. Just because someone is speaking in ways you do not understand, it does not follow that what they are saying is profound.

The psychotic aspect of mental illness, of seeing the unreal, is the aspect that is often skewed as being “prophetic.” But to use the prophets of Judaism and Christianity as an example, these were functional people. Most of them lead very ordinary lives. These were not people in the throes of madness. These were people who received transmissions and instructions, followed through with them with clarity and power, and continued on with their ordinariness. The schizophrenias, in contrast, are more often than not debilitating. And what people unfamiliar with the disease fail to realize is that psychosis, while perhaps the most fantastic aspect of this sort of mental illness, is not necessarily the most striking to the person with schizophrenia. The majority of those suffering from schizophrenia don’t even perceive their psychosis as unreal. There are a host of other symptoms that severely compromise one’s ability to live one’s life in the manner in which one should like one’s life to be lived. Agency is crippled and concept of will becomes impotent.

One does not follow the other, but neither does one negate the other. A mental illness is not an extraordinary spiritual experience in of itself. But a person can have a mental illness and also have extraordinary spiritual experiences.

I am a woman with a mental illness (schizoaffective disorder) and I am a woman who claims to have divine visions. These are markedly different states. The psychotic experiences I associate with schizoaffective disorder are simultaneously terrorizing and route. During a psychotic episode I have a repertoire of audio, visual and olfactory hallucinations that, at this point, five years after diagnosis, do not deviate much from a predictable pattern of images and sensations. But to me, terror is the hallmark of psychosis: the feeling of my mind and body assaulting themselves, and my utter impotence to stop what is happening.

Transmissions I associate as being of the divine are intense but the aspect of terror is absent. I am less comfortable talking about these experiences than I am talking about living with a mental illness. Language falls short. I don’t even know if they are about language. But to say: these experiences do not disrupt my life. I have them and I examine them and I continue on.

My writing often includes images and references to the Christian mythology because Christianity is a significant part of my history. I do not address my direct interactions with divinity in my work. But my illness is my life. By this I mean my life must be lived to accommodate my illness. My writing is not especially creative; I write about my life and my experiences. In this sense, my work is perhaps a continuous catalogue of what it is like to perceive the world with a schizophrenia. Because of my illness, terror is a familiar feeling to me and one I am able to access and transmit readily in both writing and performance. There is a brutality to my work but it is a compassionate brutality. It is the brutality of direct experience. Over and over I am trying to convey: I have experienced and I understand. I know how terribly frightened people are of each other. I know how terribly frightened people are of themselves. I want to tell people that it is okay to be frightened, but they mustn’t let their fear stop them. That they must listen to their fear and yet learn how to honestly live the lives they desire despite it. Because of it.

Q. What are the tactile appeals to you with bookmaking and letterpress? What comes closest to it, for you, outside of the press?

A. Books have always held a blatant erotic appeal for me. I get aroused standing in libraries and bookstores, being enveloped by the presence of language made corporal. The scent of books, the turning of pages, the engagement that reading demands: this all speeds quickly beyond the tactile and into the sexual.

My first letterpress class was revelatory. Handling type, using my body to operate the press to create words was the piece I did not know I was missing from writing. It was one of the most fulfilling experiences of my life. Taking the creation of language away from the domain and privacy of the mind and making it a totality of the body and the public. I love the direct incorporation of my body into the reproduction of words (and even this language? The integration of the entire corpus. The biological act of reproduction.).

A single piece of lead type has many different parts. Many of these parts are named after the body. The feet. The face. The belly. The beard. The shoulder. You can literally cup the body of a letter in your palm. And the parts of books themselves: head spine joint tail. Words and the shape of words. I know language is deeply flawed and not especially suited for the task we’ve assigned it. But I love it so much, and it’s like people in that way. Of all the things humans have created, language is closest to our selves. And to be able to give it a body, to experience the body of language directly with my body? It’s a mystical act. It’s exciting and it’s sexual.

The closest thing outside of the press is probably intimacy. Knowing a skin, knowing someone and learning how to get along with them. I think of writing and typography and printing as a relationship. As my primary relationship. Loving people and loving my work are inextricable tasks. One informs the other. Continually.

Q. What project are you working on presently that you’re the most excited about?

A. I have two major projects in the works. CVLT CVNT is a one off literary magazine featuring the work of Elizabeth Hall and Marie Fury. I am a piss poor binder and wanted to give myself an assignment to practice binding. I am very excited about this object; the writing is excellent and I have not released a handmade book in two years. This is the most complicated construction for a book I have yet undertaken for an edition. Which is not saying much. But it’s saying something. It ought to be finished up in late spring.

The second project is a new book of my own work, THE HONEYS TRINITY. I don’t know what to say about this piece. It’s an experiment in forms, primarily in typographic forms. It’s relatively lucid but the forms are weird but maybe not weird enough to be interesting. I don’t know. I only write books that please me, that’s all I’m ever trying to do. Pleasure myself. I have no qualms with calling my work masturbation. Masturbation is very pleasant and sometimes you find people who enjoy watching. I think this is currently a popular position to take about one’s writing but so it goes. Anyway. I expect to release it in late summer.

There are always more projects. Every experience presents the opportunity for a new book. One of the frustrating and beautiful things about book making is how much time and energy it requires to produce such an object. Every book is a commitment and a serious investment of hours and resources. There will never be enough time to create all the books that I envision. So many of them will persist for only as long as I am able to remember them.

Thank you, again, to Jessalyn. Please visit her at her website, Am I Human, where you can find, among other things, a free recording and e-book of her work, The Void of Course Moon.

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