Perdition Days: On Experiencing Psychosis -The Toast

Let’s note that I write this while experiencing psychosis, and that much of this has been written during a strain of psychosis known as Cotard’s delusion, in which the patient believes that she is dead. What the writer’s confused state means to either of us is not beside the point, because it is the point. The point is that 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 anti-stigma talks for schools, government agencies, and other organizations around the city. Part of this training included a lesson on appropriate language use — to say, “person with bipolar disorder,” or “person living with bipolar disorder,” or “person with a diagnosis of bipolar disorder,” instead of “bipolar” as predicate adjective. We speakers were told that we are not our disease, 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, just as a person with cancer is not a “cancer” herself, but a person who has had, through misfortune, a condition at the cellular level.

This hypothetical person with cancer is still the same person. This person with cancer will die or go into remission or be cured of the unwanted guest.

Of course, the unwanted guests are her own cells.

I had endured the longest period of psychosis of my life earlier that year, from February through August, and after trying every atypical, i.e. new-generation, antipsychotic on the market, I began taking Haldol, a vintage antipsychotic, which cleared my delusions until November 4th. On that morning, I looked at the antique sewing table in my office, seeing red wood without 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; to look at the table and suddenly realize that the past few weeks were not simply feeling “scattered,” as I repeatedly told others, but were pre-psychosis signals and warnings.

Such signals seem ordinary to other people, and were ordinary to myself. I was unhappy with my studio, so I rearranged the desk and wallpapered the far wall with gold peonies. Other signals were more foundational to my concept of Self and addressed existential queries, which may 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, 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. 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.

A young woman turns out to be the killer in Episode 10, titled “Buffet Froid,” of the television show “Hannibal.” It’s Dr. Hannibal who introduces Cotard’s delusion to Will, 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 killer, named Georgia, has suffered from Cotard’s syndrome for years, and tore the face off 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 related to Capgras delusion. Both are rare, and affect the same regions of the brain. The person afflicted with the delusion is unable to process faces in an emotional manner; it is thought that this lack 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.

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.”

Chris 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 at 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 it made sense to play-act 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 to my followers, “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 with that perception for a single day before the delusion dimmed.

Dr. M, my psychiatrist, 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, known as the complete inability to experience pleasure, as well as tardive dyskinesia, which causes uncontrollable jerking movements that don’t stop when the medication is ended, and 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 acceptance.

At some point, I stopped talking. I bent 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. As both a long-term consumer of the mental health industry and a former psychology researcher, I am overly familiar with CBT and its promises. Cognitive-behavioral therapy — 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 symptom how to cope with said symptoms.

CBT for Psychosis may, in fact, 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.

Any kind of therapy, in fact, felt to me like suggesting that I sit down and meditate in a burning building.

In 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 could I expect, and what percentage of my life could be spent at 60%, as opposed to 5%. Dr. L told me that it was “unrealistic” to believe that I would ever be at 95%, or 100%, again, which is hard for an overachiever to hear.

What percentage of insight could I expect.

No one could, or can, answer these questions, of course.

Other questions: if I am psychotic 98% 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” that 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 cruelty 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 PM

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, Chris wanted to name her Magnolia.

We had magnolias at our wedding.

I did ask for an electroconvulsive therapy appointment, 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 that mimicked the lovely world that I’d once known, but 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 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 fiction while delusional. This, after listening to the audiobook of The Yonahlassee Riding Camp for Girls by Anton DiSclafari had me disoriented and believing that I rode horses, 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, as Chris and I learned during an ill-advised viewing of “Doctor Who,” can scramble and agitate me more than I already am scrambled and agitated.

But I purchased the audiobook of Home anyway. It is one of my favorite books, and one of the saddest books I’ve ever read – yet 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. If I had stepped onto that front porch, it would have been no more or less surprising than walking out the studio door and finding myself watching Glory make breakfast for a brother who didn’t know how to love her back. I figured that 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 wondering about the state of Jack Boughton’s soul, also brought the notion of Perdition to me. 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 to doing anything when in Perdition. Instead, there is only horror, and a physical 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 too much 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 catatonic, I do wear red lipstick — I only have one tube of lipstick, called Narcotic Rouge — and Chanel foundation. I do have short platinum hair. I do wear eyelash extensions. I often 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 30+ pounds in the last year (40, 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 desk 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 the pants, my memory largely demolished as a result of psychosis, but because it was probably too cold to be wearing a skirt in that part of the city.

One the day of my consult, I helped Chris back the Ford out via hand gesture 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 amount of possessions in what I called a Pay-What-You-Want garage sale a few weeks before. (One week. Two weeks.) Chris 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 event, 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 over and over again, 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 Chris 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 Chris. “That is so, so Asian.”

His office was much less terrifying than the hospital in which it was located. Later, Chris would tell me that upon entering and realizing that 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 love that my husband thinks this way. 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 (or was it the furniture? both?) and random amounts of incoherent yelling will trigger the instinct to run in the opposite direction.

In the office, Chris told Dr. Li that he liked his armchair. As he said this, I noticed the obvious stains on its surface, and wondered why Chris 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, 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 writers’ biggest challenges, because a beginning writer wants to tell all the wrong things, or everything.

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.

At the same hospital, another nurse told me that I ought not to be upset at my roommate, who was pilfering things such as my shoes, and my favorite tweed coat, because she might not know what she was doing, or that what she was doing was wrong. One morning, I woke up and discovered that she had taken my pillow during the night.

In October 2013 I was told that I did faint on a plane and went in and out of consciousness for four hours, that I may have had a seizure, that I did not have 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, which I did not. 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 first 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 is a lack of interest in food or forgetting to eat it, leading to weight loss. In late November I was fitting into XS tops and size zero dresses again. I surprised myself by the swiftness of it. This is what diet pill advertisements mean when they exhort that the pounds will just melt away. For me, another day was another pound lost.

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 — my body had changed dramatically. During one bathroom visit I lifted my bra, which had become baggy and sad. Bones. Someday: ash. 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 Chris.

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 was able to stuff down the despair enough such 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 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 film “Funny People.” I was unaware of the fact that singer-songwriter James Taylor has a cameo in Funny People. When he came onscreen, I thought, without self-consciousness: “Oh, God. I can’t believe that James Taylor is still alive, and I’m dead.”

November 24th.

Like a child asking for a bedtime story, I crawled into bed with Chris 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 I don’t see them. 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 is from. That I picked 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 am 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 be. I thanked him. He went back to sleep, and I went back to my studio.

According to 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 living. For me, the Cotard’s delusion lifted without fanfare. There was no moment when I looked around myself and realized that I’d be resurrected, no shock of joy for having emerged from Perdition. I had become sick with other, more definably physical, ailments. I was undergoing neurological exams and MRIs and CT scans for cancer, and I was afraid, but I was conscious enough to know that there is no hope of even 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.

Photographs courtesy of the author, who was happy to be asked, having “once had a piece about mental health diagnoses run with a really awful stock photo of a Young Pretty White Girl Looking Vaguely Glum.”