A Journey Into Madness
and Back Again: Part 3

Steindór J. Erlingsson, PhD
7
27

The idea of spending more time as a bureaucrat in the US Embassy in Iceland did not appeal to me. I longed for the freedom that academics have. While pursuing that dream I stumbled into the world of international media, “chemical imbalance”, book publishing and a greedy professor of psychiatry which was a prelude to my second annus horribilis.

Following the end of my first mad period I entered the University of Iceland again, now pursuing an MSc in history of science. After graduation in 1998 I started working for the US Embassy, as the director of its Information Resource Center. When I got a grant to pursue a PhD degree at the University of Manchester I jumped at the opportunity. This did not fit well with my wife’s plans as she was about to start her PhD research at the University of Iceland. As a result I decided to go alone, which in retrospect was a terrible idea since I had at that time had a long history of difficult emotional problems.

When I came to Manchester in the fall of 2000 I was very energetic. I pursued my research with rigor and spoke frequently about one of my main interests at that time; the Icelandic biotech company, deCODE Genetics. The company was founded in 1996 and created a huge controversy in Iceland with its plans to get access to the health records of every Icelander and collecting blood samples from a large section of the Icelandic population.

I belonged to a small group of vocal activists who tried with limited success to halt or slow down deCODE’s efforts. What I had to say created interest. This resulted in an invitation to talk about my criticism at a conference that was to be held in Paris at the beginning of February 2001.

As the year came to an end I had again become seriously depressed. Being alone and working around the clock drove me once again into a vicious cycle of self-loathing and suicidal thoughts. In spite of this suffering I decided to participate in the Paris conference. I still remember how violently I shook while I delivered my talk, which was provocatively titled “How a big company can distort and manipulate a small gullible society”. I felt as if I was locked in a cage full of lions.

Few days after I came back to Manchester the shock hit me. A front page story about my talk appeared in the French newspaper Le Monde. When a newspaper of this caliber discusses an unknown individual on the front page the world media takes notice. And I was no exception. I received emails for from all over the world with requests for interviews and even invitations to visit few countries. All of a sudden the lion cage had expanded exponentially. I was terrified and decided to commit suicide. Luckily my landlord was able to stop me and I was admitted to a psych ward in Manchester. Once in there I tried again to commit suicide, almost succeeding.

Few days later my wife came to Manchester and brought me back to Iceland. I spent months in institutions, first in a psych ward and then in a rehabilitation clinic. And the order of the day was: drugs and more drugs. In the clinic I heard for the first time that I had a “chemical imbalance” in my brain and had to take one or more drugs for the rest of my life. The message was this: Without the “balancing” effects of an SSRI/SNRI (with of twist of antipsychotics and later anticonvulsants) I would not be able to maintain my sanity.

I believed this fairytale.

At the rehabilitation clinic I was also introduced for the first time to psychotherapy. With its help and rigorous exercise (tools that a few years later were vital ingredients in my recovery tool-kit) the depression gradually lifted. I was only partially aware of this at the time as I had been convinced that I was at the mercy of a terrible “chemical imbalance” that only drugs could cure.

During the summer of 2001 I became well enough to start thinking about going back to England to continue my studies. My wife decided that she and our two children would join me until end of the year. She had found a lab in Manchester that enabled her to pursue her research. We left Iceland at the end of June.

Once in Manchester I worked feverishly. I was under the impression that compensation was needed for all the months that were already lost. The discovery of archives that became the basis of my PhD research drove me even harder.

As the year before, I took little notice of my health. But this time the premise was different: The chemical imbalance myth had convinced me that I was unable to have any effect on my mental well-being; this was the job of the drugs I was taking. They were, however, not able to stop depression from engulfing me once again – but not to the extent that I needed hospitalization.

My supervisor must have sensed this, for as he found out that my family was only living temporarily with me in England I was informed that he did not want me to stay alone in Manchester. He realized that if I was going to function properly I needed my family. As a result I continued my research in Iceland.

In spite of the Le Monde nightmare I continued to speak openly against deCODE Genetics. After a high profile TV-interview in Iceland in the spring of 2002 I was encouraged to write a book about my ideas. I contacted a publisher and at the end of May I signed a contract, wherein I promised to have a book ready in September of that year. I still remember  leaving the publisher’s office with nothing but a contract in my hand. The only thing I could think about was when the depression would defeat me. All this public attention made it even worse. I was entering the lion cage once again.

The summer of 2002 was, in a way, a Kamikaze mission. When I signed the book contract I was fully aware that my suicidal thoughts and self-loathing were at their peak, but the passion to inform people about my ideas drove me on. I decided that finishing the book was more important than my life and wellbeing. What else could I do? I viewed myself as a powerless victim of a “chemical imbalance” that the drugs I was ingesting were unable to balance. I was certain that this book project would be my tombstone.

I had to be hospitalized during that summer. I fluctuated from severe depression to hypomania, even within the same day. As a result I wrote sections of the book in the psych ward.

What made my life even more difficult is the fact that I received anonymous threats.  I was informed by my editor that a powerful individual repeatedly put pressure on my publisher. He wanted to prevent the book from being published.

In spite of these difficulties, I managed to finish the book, which is entitled Our Genes: Biotechnology and Icelandic Society, at the end of August. And the reviewers seemed to like it. An Icelandic academic wrote:

Erlingsson’s critique is not specifically directed towards deCODE Genetics … but towards the ideology behind molecular genetics in general … The outcome is a fresh and vigorous science criticism … [which is] very relevant to Icelanders. It is my hope that the book will reach a wide audience, but it is compulsory reading for those who deal with policy making in matters of science and health, for those who invest in science and technology companies, and not least for those who write about science and technology, whether for professional or lay audience.

When the book was published in the fall of 2002 I was in emotional chaos. This prevented me from participating in the promotion of the book. As during the summer, I had to be hospitalized as the long Icelandic winter gradually took its hold. The drugs were unable to calm my “chemical imbalance” and the hospitalization was about to become very difficult.

In the end I decided to give one TV interview. There I highlighted the fact that the individual who at that time was the professor of psychiatry at the University of Iceland and the head of psychiatry at the National Hospital had profited from selling his patients’ blood samples and records to deCODE Genetics. As a result the professor was under intense media scrutiny during the next few days.

Soon afterwards I was once again in the professor’s hospital, not only feeling suicidal and very depressed but also nervous about the possibility that my revelation might create a backlash, which it did. I felt the professor’s wrath through an intermediary, a psychiatrist who verbally attacked me. After such brutal treatment from the individual who was supposed to treat me I felt as if locked in a nightmare. And it was about to become even more surreal.

During the hospitalization I found out that a journalist from Associated Press wanted to interview me. She had read a paper, The genomics dream in Iceland (and elsewhere) vs. cystic fibrosis, that I had published earlier that year in GeneWatch, which lead her on to my recently published book. Now she was in Iceland with a photographer. After talking to my wife I decided to grant the interview. In a way this was my way of reacting to the terrible treatment that I had received earlier from the psychiatrist.

The story (the original) began with these words: “Steindor Erlingsson feels like the least popular man in Iceland”. I still wonder if the journalist would have been willing to interview me if she had known that I traveled from the psych ward to meet her.

In my mind I was fighting a just cause, but writing this book almost ruined my life. In retrospect I am certain that the bleak self-image that the “chemical imbalance” indoctrination fostered was also a big culprit. In spite of taking all the “correct” drugs, they were unable to tame the “chemical imbalance” which I believed at that time was once again driving me deeper and deeper into madness. This made me feel absolutely hopeless. As a result I desperately accepted any drug that was handed to me. In the following months this culminated in the nightmare I described in my last post. But I eventually began to see light at the end of the dark tunnel I was crawling through, which will be the topic of my next post.

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7 COMMENTS

  1. Today is National Suicide Prevention Day, and I’ll send out your story from last week on Twitter:

    SSRIs, agitation, suicide: This man lived to tell the tale, others didn’t. Respect patients’ right to know. https://www.madinamerica.com/2013/08/journey-madness-back-part-2/ #WSPD

    THANK YOU for telling it! I’m convinced most people who experience these thoughts never tell a soul … and the guilt and fear they cause may be a factor in many suicides. I have a friend who experienced eerily identical thoughts (stabbing the whole family, even the dog!) while on Cymbalta. Your eloquent and well-told story could save more than a few lives.

    It’s also not easy to stand in front of a profit-driven freight train such as this genetics company! You’ve inspired me to learn more about the issue. Thanks again.

  2. Dear Steindór, your story is so alarming but so insightful and well described. What you have been through is horrific. I would love to also post it (all 3 parts) on SSRI stories, if you give permission. I think that your story is so important and the more people who read it, the better. Thank goodness you survived; many do not, my son included. Thank you for providing a first-hand account of what these drugs can do.