I write this while experiencing a strain of psychosis known as Cotard’s delusion, in which the patient believes that they are dead. What the writer’s confused state means is not beside the point, because it is the point. I am in here, somewhere: cogito ergo sum.
In October 2013, I attended a speakers’ training at the Mental Health Association of San Francisco. As a new hire at the bureau, I would begin, in 2014, to deliver antistigma talks at schools, government agencies, and other organizations around the city. Part of this training included a lesson on appropriate language usage—to say “person with bipolar disorder,” or “person living with bipolar disorder,” or “person with a diagnosis of bipolar disorder,” instead of “bipolar” as a predicate nominative. We speakers were told that we are not our diseases. We are instead individuals with disorders and malfunctions. Our conditions lie over us like smallpox blankets; we are one thing and the illness is another.
I had endured my longest period of psychosis earlier that year, from February through August, and after trying every atypical, that is, new-generation, antipsychotic on the market, I began taking Haldol, a vintage antipsychotic, which cleared my delusions until November 4. On that morning, I looked at the antique sewing table in my office, seeing red wood without totally seeing it, and felt the old anxiety of unreality. The full delusion would not come until a day later, but I knew what this meant; the past few weeks had not been simply feeling “scattered,” as I repeatedly told others, but had been prepsychosis signals and warnings.
Such signals seem ordinary to other people, and were ordinary to me. I was unhappy with my studio, so I rearranged the desk and created an accent wall with wallpapered gold peonies. Other signals were more foundational to my concept of self and addressed existential queries, which might have been a more obvious sign of distress. I was unsure about my foundational values, so I reread Danielle LaPorte’s book The Desire Map: A Guide to Creating Goals with Soul, and “discovered” my Core Desired Feelings; having connected with my Core Desired Feelings, I dutifully wrote them in multiple colors of Le Pen on a gridded sticky note for my Filofax. I initiated work with a friend and “functional Muse,” during which I began soul-searching about my relationship with writing and art in general, referring repeatedly to the question “What is art, and what is its function?”
All of this made sense in hindsight, as much as anything could make sense. In past psychotic episodes, my response has been to desperately assemble rituals or structures that will somehow ward off the anxiety of a psychotic fracture, or Eugen Bleuler’s “loosening of associations.” To assemble the parts of my mind, which has begun to fall apart—to become “scatterbrained”—into cohesion. But analysis didn’t solve matters. Neither did the new dividers for my Filofax, or the five 2014 planners that I ordered, wrote in, and abandoned. Ritual, my therapist told me later, would help, but it was not the solution; there was no solution.
Cotard’s delusion was first described in 1882 by Dr. Jules Cotard, who called it “the negation delirium”; few instances of the disorder have been discovered since. Case reports can be found here and there—the story, for example, of a fifty-three-year-old Filipino woman who had recently immigrated to the United States, who “[complained] that she was dead, smelled like rotting flesh, and wanted to be taken to a morgue so that she could be with dead people.” What we do know about the disorder hinges upon the tiny number of cases that occur worldwide, best summarized in a 2011 review article by Hans Debruyne et al. in Mind and Brain.
Debruyne and his colleagues suggest that Cotard’s delusion is related to Capgras delusion, which I have also frequently experienced. Both delusions are rare, and both affect the fusiform face area and the amygdala, which processes emotions. The normal emotion that I would feel looking at a loved one’s face is absent. The person afflicted with Cotard’s is unable to feel emotions about familiar faces. It is thought that with Capgras this lack leads to a conclusion that the person’s loved ones have been replaced by doubles, and with Cotard’s that the person experiencing the delusion is herself dead.
In Scientific American, Dr. James Byrne writes about Cotard’s delusion, “As comical as it appears to be, it is obviously a manifestation of some deep-seated emotional issues or brain dysfunction.” It is this flip attitude toward such delusions that results in headlines referring to an “invasion of the body snatchers” and “reverse zombie syndrome”—two pop-journalistic, unsubtle references to low-grade horror that have little to do with the actual terror of either of these delusions.
In episode 10 of the TV show Hannibal, titled “Buffet Froid,” a young woman turns out to be the killer. It’s Dr. Lecter who introduces Cotard’s delusion to Will, the show’s protagonist, and therefore to the audience: “Have you considered Cotard’s syndrome? It’s a rare delusional disorder in which a person believes he or she is dead…. Even those closest to [her could] seem like imposters.” The killer, named Georgia, has suffered from Cotard’s delusion for years, and tore the face off one of her victims, presumably to see what was beneath. At some point, when Will encounters her, he shouts, unhelpfully, “You are alive!”
In the beginning of my own experience with Cotard’s delusion, I woke my husband before sunup. Daphne, our dog, stirred, began thumping her papillon-mutt tail against the bedsheets. I’d been in my studio, but now I was shaking my husband, and I was crying with joy.
“I’m dead,” I said, “and you’re dead, and Daphne is dead, but now I get to do it over. Don’t you see? I have a second chance. I can do better now.”
C. said, gently, “I think you’re alive.”
But this statement, of course, meant nothing. It was his opinion, and I had my solid belief. I can state that the sky is green, but will you see it as such? I felt buoyant with the belief that I was getting a second chance in some kind of afterlife—it caused me to be kinder, to be more generous. I wasn’t irritated by problems with computer downloads. I was sweet to telemarketers. It was true that I was dead, but I believed that it made sense to playact normalcy, or rather, an improved version of normalcy, because of the additional belief that I was in an afterlife. According to the logic of my delusion, this afterlife was given to me because I hadn’t done enough to show compassion in my “real” life, and though I was now dead, my death was also an optimistic opportunity.
I tweeted, What would you do if you were actually dead, and the life you were living right now was your second chance?
It was a good hypothetical question, the kind of thing that a self-development junkie like me was apt to mention. But for me, it was true. I stayed within that perception for a single day before the delusion dimmed.
Dr. M told me straightaway that we would not be adjusting medications. Increasing the Haldol, which had ended my prior psychotic episode, created the risk of severe anhedonia, as well as tardive dyskinesia, for which there is no cure. There would be no more trial-and-error merry-go-round of antipsychotics. Dr. L, my therapist, pointed out that delusions are harder to medicate away than hallucinations. My form of schizoaffective disorder was, Dr. M said, medication-resistant. Both agreed that the best course of action was for me to learn coping mechanisms and practice acceptance.
At some point, I stopped talking. I leaned away from Dr. M in the maroon velvet chair.
Because Dr. L was present via conference call, Dr. M reported, “She’s frustrated,” while I sobbed over the back of the chair.
Dr. M mentioned a Cognitive-Behavioral Therapy for Psychosis group. Cognitive-behavioral therapy (CBT)—also known as “therapy with homework”—operates on a systematized process of adjusting false cognitions and maladaptive behaviors. One favorite study, or series of studies, has shown that CBT can be as effective as antidepressants alone. Because of this, insurance companies love CBT; why spend years on the couch yammering about childhood and dreams, or paying for expensive drugs, when a dash of CBT could do the trick? CBT for Psychosis, as far as I gathered while crying, was designed to teach people who live long term with psychotic symptoms how to cope with them.
CBT for Psychosis may be a lifesaving program. But at that appointment, I was convinced that I was dead, and I didn’t see how a technique built upon adjusting beliefs could help me extract myself from that conviction.
The prospect of any kind of therapy felt to me like a suggestion that I sit down and meditate in a burning building.
During previous episodes, Dr. M had suggested both hospitalization and electroconvulsive therapy (ECT). They were not mentioned now, presumably because neither made sense. Hospitalization and ECT are offered as options for the journey toward getting better, and I was not going to get better.
The questions instead became about percentages.
What percentage of my life was going to be spent in psychosis.
What percentage of functioning I could expect. What percentage of my life could be spent at 60 percent functionality, as opposed to 5 percent. Dr. L told me that it was “unrealistic” to believe that I would ever be at 95 percent, or 100 percent, again, which is excruciating for an overachiever to hear.
What percentage of insight I could expect.
No one could, or can, answer these questions, of course.
Other questions: if I am psychotic 98 percent of the time, who am I? If I believe that I don’t exist, or that I am dead, does that not impact who I am? Who is this alleged “person” who is a “person living with psychosis,” once the psychosis has set in to the point that there is nothing on the table save acceptance?
When the self has been swallowed by illness, isn’t it cruel to insist on a self that is not illness? Is this why so many people insist on believing in a soul?
From my journal, a list:
11:13 p.m.
I am Esmé.
I am a writer.
I have been married since 2009.
I have living parents.
I have a brother, who is married.
I am 5 ft. 4.
I was born in Michigan.
My birthday is June 8.
Flowers I love: ranunculus, peonies, sweet peas, jasmine, anemones.
If we had a girl, C. wanted to name her Magnolia.
We had magnolias at our wedding.
I did ask for an ECT consultation, otherwise known as the treatment of last resort, because the delusion now showed a sinister face that I found untenable. Whereas I’d once believed that I’d been gifted an optimistic afterlife, this shimmering notion was quickly replaced by the idea that I was in perdition. In this scenario, I was doomed to wander forever in a world that was not mine, in a body that was not mine; I was doomed to be surrounded by creatures and so-called people who mimicked the lovely world that I’d once known, but who were now fictions and could evoke no emotion in me. I spent much of my time in catatonic psychosis, a form of agitation characterized by overactive movement or no movement at all, and I lay in my bed feeling psychic agony more excruciating than any personal experience of physical pain.
My choice of the word “perdition” is deliberate, because during this period of illness, I’d chosen to listen to the audiobook of Marilynne Robinson’s award-winning novel Home. To purchase and then listen to Home involved some complicated decision making. I’d been advised by my therapist months earlier to avoid consuming fiction while delusional. This, after listening to the audiobook of The Yonahlossee Riding Camp for Girls by Anton DiSclafani had me disoriented and believing that I rode horses and was at a boarding school. Psychosis causes my reality to become a hodgepodge; the addition of fictional elements is more unnecessary fodder for the mix, and the content can make me more scrambled and agitated than I already am.
Yet I purchased the audiobook of Home anyway. It is one of my favorite books, and one of the saddest books I’ve ever read; I didn’t care if I slipped into Gilead. I chose Home knowing that I would likely become merged with the fictional world there, and I did. I would leave my room surprised that I wasn’t stepping onto Ames’s front porch, which would have been no more or less surprising than walking out the studio door and watching Glory make breakfast for her self-destructive brother, Jack, who doesn’t know how to love her back. If I were going to be lost and wandering, I’d rather be lost in Gilead than anywhere else.
But the reality of Home, which spends a good deal of time discussing the state of Jack Boughton’s soul, also brought the notion of perdition to me. I had little familiarity with the Calvinism that marks Robinson’s work. What I did know from Home was that Jack Boughton is interested in questions of whether he was born predestined for perdition. In one scene, Jack tells his sister, Glory, that he believes that their preacher father fears for Jack’s unsaved soul. Jack is known for his exploits and sins, and tells Glory that he finally looked up “perdition” in the dictionary: “The utter loss of the soul, or of final happiness in a future state—semicolon—future misery or eternal death.” He adds, “This does all seem a little cruel, don’t you think?”
Cruel or not, I latched onto that word. Having never been Christian, I still saw myself as being a soul in a state of eternal damnation because I couldn’t otherwise explain what had happened to me.
During the “perdition days,” which had no rhythm to them, I could not summon the motivation to do anything. I would not eat. I often would not move. I would not attempt to read or answer an email or have a conversation, because there is no point in doing anything when in perdition. Instead, there is only horror, and an agitation that refuses to manifest physically for lack of motivation.
There was the question of what to wear to my electroconvulsive therapy consult, which would take place at the University of California, San Francisco. If I looked too pulled-together for the consult, I figured, I wouldn’t be able to convey that most of the time I was suffering from psychic torture. If I looked like a mess, I might end up institutionalized, and I’d had enough experience with psychiatric hospitals to know that I didn’t want or need hospitalization.
Unless I’m catatonic, I do wear red lipstick and Chanel foundation. I do have short platinum hair. I do wear eyelash extensions. I sometimes go for months without showering, but I do not look disheveled. Friends text me for style advice. I have modeled—not professionally, or well, but I have done it. I tend to look superficially good under bad circumstances.
Having lost thirty-plus pounds in the last year (forty, by the end of the following week), I’d adopted the hyperbolically named “French ingenue” uniform. In what was a profoundly lazy, but effective, look, I shimmied into V-neck white T-shirts and black pants, or the same V-neck T-shirts and a black pencil skirt with calf-high socks. I sold or donated everything else, much of it acquired when I was a fashion writer and still holding down a full-time job: a flutter-sleeved, button-down Sonia Rykiel dress I’d bought and worn at a writing residency in Toronto; two differently sized, but otherwise identical, silk Marc Jacobs dresses; black pleather leggings that I wore as pants. To the consult, I chose to wear the pants and shirt. I put on makeup. I say that I put on the pants not because I remember wearing them, my memory being largely demolished because of psychosis, but because it was probably too cold to be wearing a skirt in that part of the city.
On the day of my consult, I helped C. back the Ford out via hand gestures from the sidewalk. As I leaned against a parked car, hand up, two young men walked by. The attractive, curly-headed one turned his head as he passed. Yes, I thought, our eyes meeting, you may think I’m hot, but I’m also a rotting corpse. Sucks to be you, sir.
I’d sold an enormous number of possessions in what I called a pay-what-you-want garage sale a few weeks before. C. had seen my tweet, and its link to my Craigslist ad, the day of, and called me about it. Everyone knows that giving away possessions is a potential red flag for suicide. I was already dead, so suicide never came to mind, but the idea of having meaningless possessions did. This unnerved the people who came to my pay-what-you-want endeavor, who didn’t understand the concept of someone who wanted to sit there and watch people offer whatever they wanted, including nothing, to take away her things. Everyone asked, sometimes repeatedly, what amount I “intended” to sell, say, an elaborately knit cowl-neck scarf for. And I had no answers for them. One dollar was the same as ten dollars was the same as nothing. Some people seemed so confused by this that they just left. One woman grabbed armfuls of things and threw a five-dollar bill at me.
The only thing left afterward was a red cardigan. I left it in a bag and put it outside, but no one took it. When C. finally noticed the cardigan, he said, “But you love that cardigan.”
Did I love that cardigan? I couldn’t tell if I loved him or my mother, let alone a cardigan that I’d worn around my studio for a year. I threw the cardigan away.
The ECT consult was with a psychiatrist named Dr. Descartes Li.
“Naming their son Descartes,” I said to C. “That is so, so Asian.”
His office was much less terrifying than the hospital in which it was located. Later, C. would tell me that when he realized it was a psychiatric hospital, he’d immediately begun creating an escape plan to the car in case we needed to “make a break for it.” I am perversely thrilled that even though he has never actually had to stay in a psychiatric hospital, he has been secondarily traumatized enough that a 1970s decor with odorous carpet and furniture, plus random amounts of incoherent yelling, will trigger his instinct to run in the opposite direction.
In the office, C. told Dr. Li that he liked his armchair. As he said this, I noticed the obvious stains on its surface, and wondered why C. had chosen that particularly disturbing thing to compliment (were those sweat stains from frightened patients or distraught relatives over the years?). Dr. Li had a copy of Marbles: Mania, Depression, Michelangelo, and Me, a recently released bipolar-memoir graphic novel, in a basket on top of his bookshelf, which I pointed out. No, I said, I didn’t like it, but it might have been because I wasn’t a fan of the art.
I had sixty minutes. How much of it was small talk? He asked for my psychiatric history, though he had much of it already due to thorough notes from Dr. M. There was no clock in the room. I didn’t know how much to tell or what to leave out.
Pacing, they told me at graduate school, is one of the beginning writer’s biggest challenges, because a beginning writer wants to tell all the wrong things, or everything at once. A nurse told us at the hospital in Covington, Louisiana, where I’d been committed during a Christmas vacation at my in-laws’, that we were there because we did not believe in Jesus, a conviction that he had extrapolated from one young woman’s confession of unbelief during group therapy. In October 2013 I was told that I fainted on a plane and went in and out of consciousness for four hours, that I might have had a seizure, that I had not had a seizure, that there was nothing to be done. I was told to go home and return to the emergency room if I fainted again. I was given a neurotransmitter test and told to mail it in, which I ultimately did not do, in part because of the remarkable number of misspellings and grammatical errors in the instructions, and in part because Dr. M told me that such things were hogwash. I was told that I had lost twenty pounds in two weeks, but that the only physical problem with me was peripheral neuropathy, or a numbness and prickling in my hands and feet, which was determined in October to be the result of a vitamin B6 toxicity, a determination to be rejected later. I was told that my debut novel was “still under consideration” at every house it had been sent to, which meant essentially nothing. In October I began to fracture, but I did not recognize it as fracturing, and I was told so many things that month, but I was not told that I was losing my mind again.
A side effect of my condition was a lack of interest in food or forgetting to eat it, leading to weight loss. In late November 2013 I was fitting into size XS tops and size zero dresses again. I surprised myself by the swiftness of it.
When I did look in the mirror, a practice that I generally avoided—the neurological disruption that creates a disconnect between emotional recognition and faces extends to my own as well—I noticed that my body had changed dramatically. During one bathroom visit I lifted my bra, which had become baggy and sad. Bones. Someday: ashes. I ordered a new bra, which was black and edged in peach lace.
It arrived. I slipped it on. It was, somehow, ridiculous in its sexiness. The cups barely covered. The straps were designed to look like a harness. It was me, but it also wasn’t me. I took a self-portrait with my 1970s Polaroid camera. The resulting picture, in which I am doing my best to make a charming, alluring face, I gave to C.
Somatic details figure heavily in these recollections: what I wore, what I looked like. I told myself, through mirrors and dressing up and Polaroids and weighing myself, You have a body. The body is alive.
But the more that I tried to remind myself of the various ways in which I did, in fact, seem to have a body that was moving, with a heart that pumped blood, the more agitated I became. Being dead butted up against the so-called evidence of being alive, and so I grew to avoid that evidence because proof was not a comfort; instead, it pointed to my insanity.
Why do any of these things? Why did I behave in the manner of someone who was alive when I believed, to differing levels of absolutism, that I was dead? The notion of perdition never left me when I was suffering from Cotard’s delusion, but the degree to which I despaired about it did. Most of the time, I could stuff down the despair far enough that I continued to—pointlessly, in my mind—brush my teeth, sometimes wash my hair in the sink, and report my symptoms to the phantom who claimed to be my doctor.
Suicide was not on my mind, though it had been before, during my depressions. Perhaps if I’d considered suicide as an option, I wouldn’t have continued to do what I saw as meaningless tasks, and would have tried to kill myself instead. But as a dead woman, my condition meant that a successful suicide would simply doom me to the same thing, or to a deeper, unfathomably worse circle of hell.
Instead of killing myself, I watched the Adam Sandler movie Funny People. I was unaware of the fact that singer-songwriter James Taylor has a cameo in the film. When he came on-screen, I thought, without self-consciousness: Oh God. I can’t believe that James Taylor is still alive, and I’m dead.
November 24, 2013
Like a child asking for a bedtime story, I left my studio and crawled into bed with C. at six in the morning. I said, “Tell me about what is real.”
I asked him about everything. I asked him to tell me who I am, what I like, where I am from, what I do. I asked him about my parents. I asked him if they are real, even though they live in another country, and I only see them once a year. I asked him about the president, and about the vice president. He told me about our house. He told me about our neighborhood and the city in which we live. He explained where the furniture was from. That I’d picked out all of it myself. He told me about the farm table in the dining room.
I listened as he employed logic to tell me that I was alive.
“When people die,” he said, “they are buried, and then you don’t see them again. That’s what happened to Grandpa this year. I don’t see him anymore, but I see you.”
None of this solved the problem, but it did help. It was as comforting as a bedtime story would have been. I thanked him. He went back to sleep, and I went back to my studio.
According to Greek myth, Demeter calls forth Persephone from the land of the dead once a year. I imagine myself as that pale daughter, who, in my imagination, has become so accustomed to being among the dead that she doesn’t comprehend her transition into the land of the living. For me, the Cotard’s delusion lifts without fanfare. There is no moment when I look around myself and realize that I have been resurrected, no shock of joy for having emerged from perdition. I have become sick with other, more definably physical ailments. I undergo neurological exams and MRIs and CT scans for cancer, and I am afraid, but I am conscious enough to know that there is no hope even of death in perdition, only more of the same awful suffering. It stands apart from loss, injury, or perhaps even grief, all of which are terrible, and yet are still beautiful to the dead woman, who sees them as remarkably human, and alive.