Cotard Syndrome:Between ‘Death’ and Afterlife

THE CURIOUS CASE OF THE LIVING DEAD

New York City

On a particularly dark October evening in 2008, J (name withheld on request), who is now 38-years-old, returned from work and walked upstairs to kiss his then four-years-old daughter Good night. Taking her head on his lap, he brushed his fingers through her hair and gently tucked her in to retire for the night. In the dark quiet room, he could hear his thoughts rush by inside his head, he says.

“I was thinking how much I love my daughter and how happy she made me in general but intruding into this thought and blending with it somehow was the thought that I should electrocute myself,” J, who grew up and lives in upstate New York, says, “I didn’t know which way was up. The same morning, I was bursting into tears at work at the thought of death and how beautiful it all seemed. It was endlessly fascinating because I could comprehend it on a level nobody else was capable of, since I had already been there. It was intricately intertwined with regular, mortal existence.”

Putting his fingers inside the empty sockets in the lamps on the stairway, where the bulbs were missing, struck him as a brilliant way to execute his plan. It is one of the most painful ways to go, he had learned. He went to the restroom to moisten his hands, only this time, his trail of thoughts were interrupted by the footsteps of his wife.

He would have to do it another day, he thought.

If you were to enter his name on internet search engines, chances are you would find out very little about his personal life, except that he has been quoted in an article published in Wall Street Journal. The article was about the philosopher side of David Foster Wallace, the author of famous novel, Infinite Jest, who killed himself in 2008 after suffering from a mental disorder for over twenty years. J is quoted as one of the first persons to lay hands on the manuscript of Wallace’s second thesis paper titled ‘Fate, Time, and Language’ an essay on fatalism.

The connection, between Wallace and J, is not entirely uncanny.

In 1994, J was taken to the hospital for a medicinal overdose. He died. Or so, he thinks.

“I was scared to look in the paper the following morning, since I expected to see my obituary. Everything around me seemed to hold subtle, cryptic clues that I had entered the afterlife and was in some sort of holding pen,” J recalls. “Its not just the government or your workplace out to get you, it is the whole cosmos. If you look close enough, and create enough bizarrely elaborate connections, you will find the confirmation you are looking for.”

J would listen to the song ‘First Breath After Coma’ by Explosions In The Sky on loop. The song, which talks about coming back to life after death and more broadly about second chances, would affect his entire being in a way nobody understood, he claims.

Cotard Syndrome

The condition is named after French neurologist Jules Cotard who first discussed it back in 1880. One of Cotard’s first cases of this delusional disorder was the case of Mademoiselle ‘X’ who denied the existence of parts of her body and her need to eat, since she thought she was ‘condemned to eternal damnation‘ and so could not have a normal death. She eventually died of starvation.

“I was in a 12 step meeting and listening to people talk about how they could have died if they had choked on their vomit one night when they were drunk, and one guy who seemed to have a lot of credibility and authority, talked about how he had been stabbed to death in an alleyway in Cleveland, and I was in a bad state and unmedicated. I figured since he was dead and I was in the same room as him I must be dead too,” J says, “It was numbing and scary. Everything took on these ominous overtones. I couldn’t tell my loved ones because they would think I was crazy, and perhaps they were somehow in on it. It’s very frightening to believe your family is not really your family any more but some kind of celestial robots.”

J believes, he has been living in an afterlife since 1994. But he has little idea about how he landed in the ‘afterlife’.

“It was an unanswered, nagging question that filled me with a lot of fear and sadness. I looked at people’s slogans on their t-shirts, which somehow held information about my afterlife and I remember seeing the symbol of a ram on a Dodge Ram’s taillight and thinking this was some sort of marker indicating I was in Hell (ram = horns & hooves = the devil),” J explains, “Part of confronting death is in contemplating the sadness and heartbreak of your loved ones when they must have learned of your death. And sometimes these loved ones (or their supposed impostors in my afterlife) did show glimmers of this heartbreak, as if they were like antennae repeating a faraway signal.”

J was experiencing the typical symptoms of a person suffering from Cotard’s delusion, where the distorted reality is caused due to a malfunction in an area of the brain called the Fusiform Gyrus, which is responsible for facial recognition, and in the Amygdala, a set of neurons located in the bottom of the brain stem, that processes emotions. The combination is a lack of recognition when viewing familiar faces (even the face of the patient himself), leaving the person feeling disconnected.

Something common between Cotard’s patients and J is the influence of the condition on their religious beliefs about death and vice versa. For J, going to the Church became an unbearably painful experience.

“Everything became infused with religious meaning since one of the major topics religion addresses is what happens to you once you die. You can get obsessed,” J says, “I remember once going into the church with my child and shielding from her the sight of a squirrel the lawnmower had run over, it was an awful sight. And it stuck in my head.” J believed his death was being shielded from him, just like he shielded his daughter from an ‘awful sight’.

“I couldn’t see it although it happened. My death happened at some point and my consciousness kept on moving through it as though carried by a kind of momentum on a trajectory that resembled the previous life but only on a superficial level,” says J.

This is perhaps J’s way of making peace with his ‘death’ logically. J tries to draw support for his own understanding through para psychological belief systems.

“Certain people believe in reincarnation or being born again and to me this seemed like a kind of proof that such a thing as an afterlife in the here and now was true,” J says, “Other people had had a sort of inkling about it. That life and death were hazily connected and not like one TV program ending and another one beginning after a few seconds of darkness.”

J’s background explains his ability to be so articulate about the complex nature of his condition. J studied literature at State University of New York and then briefly interned at Bright Hill Press researching biographical information on New York State writers. He is also a member of the Bright Hill Advanced Poetry Workshop group and he reads his work at Word Thursdays.

“I was somewhat good at going about my day without showing any signs that I believed I’d died,” J says.

According to a paper published by K Yamada and colleagues in a 1999 issue of Acta Psychiatrica Scandinavica, Cotard’s has three distinct stages- germination, blooming and chronic. The first stage (germination) comprises psychotic depression and hypochondria. The second (blooming) stage comprises the full development of the syndrome and the delusions of negation. In the final (chronic) stage, patients show signs of severe delusions and chronic depression, and leads to a completely distorted view of the world in which they live. They tend to become socially withdrawn and cannot make sense of reality.

This helps one understand J’s situation better when he narrates yet another attempt to kill himself after going through a bout of depression, very symptomatic of Cotard’s syndrome.

“There was a patio behind the hotel (in Cooperstown) where I worked and I speculated about whether I would die again if I fell and hit the patio,” J recounts, “Then I thought about doing it during lunch hour when the patio would be busy.”

Wearing a dark blue slacks, polo red shirt and a shiny golden name tag, J fidgeted around with his walkie-talkie.

“We had earbuds so we could hear the chatter coming through. It was strange to be walking among people and think I may kill myself later, right on this property. I was going to jump off the fifth floor of the hotel, by using my card key to get into somebody’s hotel room on the fifth floor and climbing out on the roof,” J says. He was held back by the image of his daughter running in his head. She, according to him, was god’s way of ensuring he continued in this afterlife.

Two days after this incident, he checked into Four Winds hospital to end the ‘inner turmoil’ that had been ravaging his mind, health and led him to end his marriage.

Treatment

J says, he did not even know the name of the condition and neither was he ever informed about the Cotard’s syndrome by his doctors, though they treated him for bipolar disorder and psychosis with religious overtones and symptoms matched exactly. He went through Dialectical Behavioral Therapy that uses Retrospective Falsification, a process that helps slow down thoughts. This allows the patient to really observe their thoughts instead of acting upon them in haste. The treatments coupled with anti psychotic medications, have helped him get back to some kind of routine, though it is hardly an ideal life. J does not have a steady job except one at a local church, which nevertheless, is a sign that his religion-related fears have subsided.

“The thoughts never quite completely go away although I am pretty sure I am alive, whatever that means,” J says, “I should highlight the fact that if one is dangerously depressed (as I have been) and not sure if one is already dead or not, then suicide becomes a much different equation and the person can be much more volatile and willing to say goodbye to ‘life’.”

J’s constant insistence on dwelling on matters like his own ‘death’, depression and attempts to harm himself, can force someone to believe, that he may have attention seeking tendencies. But it is not that simple because he has presumably lost much more to the ailment than someone who is looking for attention would care to lose. It cost him his marriage.

J was married to an associate professor at one of the colleges he studied in. They had a daughter in 2004.

“She split with me because I was depressed and talking about suicide relatively often. I just had no life force. She was really scared I was going to do it and destroy our daughter, and everyone else. And to my great shame, I don’t know if I felt like a whole husband, or even a whole man towards the end. The condition really destroyed my life,” J says. “It was not my idea- the divorce. I was so ashamed that I caused this to happen. I still am (ashamed).”

J first learnt about the condition on a comedy podcast where the commentators were discussing mental disorders.

“They were mocking certain mental disorders or marveling at how stupid people had to be to believe they were already dead or that their family members had been replaced by malevolent doubles,“ J remembers. This pushed J further into the cocoon of non-disclosure, a tragedy that patients with rare conditions, especially mental disorders live with, according to J.

Though part of medical literature, the actual cases of patients suffering from the condition have come few and far between. But the ones that have been documented range from tragic to bizarre.

In a famous case study published on National Center for Biotechnology Information, in 1788, Charles Bonnet reported one of the earliest recorded cases of Cotard’s Delusion or Nihhilistic syndrome. The patient, an elderly woman was paralyzed on one side of her body. On being able to feel, move and speak again, she asked to be covered in a shroud and treat her like she is dead. Even then, she fussed about the color of her shroud.

In 2008, a patient, Miss Lee, in New York complained that she was dead and she smelled like rotten fish. In 2012, a patient in Japan reportedly went to the doctors and said, “I think I am dead. I would like to know your opinion.”

A study done by Hans Debruyne, a Belgian Psychiatrist in 2011 showed that only 0.11 percent of all neurological patients show symptoms for Cotard’s syndrome.

It is telling about the scope and rarity of the condition, that when the author of this article got down to find researchers and psychiatrists in New York City and Washington DC to get inputs about the symptoms and diagnoses about Cotards- of the 10 psychiatrists she approached, eight of them either needed to ‘look it up on the internet’ or asked her to get back to them on a later day, once they had done their own ‘research’.

“Although it is in the literature, I personally have never come across anybody,” says award winning professor of clinical psychiatry at Columbia University Medical Center, Dr. Lewis Opler, who has been credited with introducing a rating scale for severity of a syndrome in the field of delusional disorders. “Only one patient with a delusion of being dead: and her’s was particularly bizarre because she insisted she was a DEAD Cat. It was a patient at Bronx psychiatric center in 1979 but I wasn’t treating her,” Opler said.

What is J upto these days?

J is back to the world of literature and writing. He is currently writing a novel about the cultural tensions between upstate New Yorkers and downstate New Yorkers.

“Its about how provincial we can be up here and how there’s a certain degree of hate that is unfortunately passed down generation to generation,” J lightens up while talking about his novel.

When it is pointed out to him, that indeed it is after a very long time that he has refrained from talking about glib things, he says, “I guess that is a good sign then.”

At a time when too many issues and too many advocates jostle for public attention, J does not believe Cotard’s syndrome would ever be taken seriously and empathized with.

“Psychiatric professionals, or at least the ones I have met, are not interested in drilling down to the heart of such a strange delusion and trying to analyze it or confront it on its own terms,” J says, “I don’t think there will be an awareness ribbon for Cotard’s delusion anytime soon! I think the average American hearing about it would be confused and astonished by such a thing.”

One of J’s poem found on his Facebook page

The wide veranda

facing the frozen lake

pops and snaps in the pre-dawn subzero air —

an immense sleeping dragon

who shifts and ripples irritated wings.

From the outside at night

the century-old hotel

is an elaborate cake

with half its candles blown out.

My footsteps in the snow

of the back lawn end where I must

have just remembered something

and turned back.

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