On Not Becoming David Foster Wallace

A dozen years ago I created a website, now extinct, called ‘Five Years’. From the David Bowie song of the same name (“We had five years left to cry in”). The idea was to see how my attitudes evolved over the coming five years: toward optimism, toward pessimism, or same-same.

My first column was about David Foster Wallace, whose ‘This is Water’ commencement address at Kenyon College (2005) had become a touchstone (see transcript here, and audio recording here). What I didn’t know then, although I had been on paroxetine for 18 years, was that he was the unacknowledged poster boy for antidepressant withdrawal.

Wallace hanged himself in 2008 after withdrawing from a long-term medication, experiencing unbearable withdrawal symptoms and finding himself unable to regain relief (such as it was) in his old medication or new ones prescribed to him.

I didn’t know Wallace was a poster boy for antidepressant withdrawal because I didn’t know that antidepressant withdrawal was common, or that I would be experiencing it myself and understanding firsthand the hellish bodily and mental feelings that make one long for death, for everything to stop.

I had been prescribed paroxetine, a selective serotonin reuptake inhibitor (SSRI), in 1994 for obsessive-compulsive disorder (of which I am at the milder end of the spectrum) in addition to depression. OCD has a strong genetic component and was thought to be incurable. I call it ‘the Lyon glitch’, because pretty much everyone on my father’s side of the family has some version of it. Alcoholism and mental disorder and distress are more common in our family than the norm, as are unpredictably volatile and traumatic developmental environments. I was told, and believed, that I would be on this drug for life.

This was a sacrifice because the drug had life-altering side-effects: sexual dysfunction, excessive sweating, weight gain, tinnitus. I convinced myself it was necessary, as did my always-supportive and loving husband, now of 37 years, who sacrificed, too. I convinced myself the drug was making a difference; we both did.

In actual fact it wasn’t, or wasn’t much. I still had periods of intense obsession, positive and negative, and a vulnerability to volcanic anger and depression. We both thought the vulnerability was accentuated when I didn’t take my meds—the longest period of negligence was 10 days when my mother died in 2014 (nothing happened)—but we didn’t know anything about the withdrawal syndrome then.

In November 2022 I was given an article about the discredited ‘chemical imbalance’ theory supporting SSRI prescription by a neuroscientist colleague I was collaborating with and who contributed to Mad in America, about which I knew nothing. He gave me the article as an example of his more recent work. He knew nothing about my medication status.

The article bowled me over. I am an academic researcher and immediately began searching in the peer-reviewed literature about paroxetine withdrawal. It did not look good. I then started looking at risk factors associated with paroxetine use. That looked worse.

A comprehensive review published in 2016—the title of which is a warning—found a wide variety of adverse side effects associated with paroxetine use, among them an increased risk for breast cancer and an association with birth defects in babies born to mothers on the drug. The total picture led the researchers to conclude that paroxetine is “possibly the least safe of antidepressants,” particularly in females (p. 101).

More alarming, elsewhere in the literature, was the finding of a higher risk for dementia in SSRI users than non-users aged 60 and older. A more recent study of longer-term antidepressant use (10 years plus) in subjects 65 and older found paroxetine was the only antidepressant that carried a higher risk for dementia, in all TSDD (total standardized daily doses) categories. The finding supports results of a 2019 study that found a higher risk for dementia in those 55 and older with cumulative exposure to strongly anticholingeric medication, especially antidepressants. Paroxetine has the strongest anticholinergic activity of any SSRI.

I later learned prescription of paroxetine to people aged 65 and older has been discouraged since 2016. At the time I was 69 years old and had been on the drug for 29 years.

I wrote back to my colleague and confessed my situation. He freaked out, said that paroxetine was “one of the worst” to withdraw from (it is) and at a recent symposium at Yale he had learned that weaning off the drug could take up to two years. (Or more. I am now in my 21st month, withdrawing from the last milligram. Down from 40mg. I have five and a half months to go.)

Two months after the exchange with the neuroscientist, in January 2023, I began tapering.

I put faith in my ability to manage whatever came, but I couldn’t. Two months after I began tapering, I harmed myself physically for the first time since early adolescence: I slashed my left arm with a serrated kitchen knife, over and over again. It happened again three months later. This was embarrassing because I was on a long, overseas trip during which I had talks and seminars to give. My arm was first bandaged and then the marks were visible.

I kept losing it emotionally, big time, but I thought I was just under pressure. It felt like a river of anxiety and fear was running through my body, in my bloodstream or my nervous system, and I felt the perpetual urge to move, which I suppressed as best I could. Suicidal thoughts were regular companions. I learned only recently this has a name: akathisia.

(An excellent source of straightforward information on akathisia, including videos and an online course, is MISSD, a medication-induced suicide prevention and education foundation established in the memory of Stewart Dolin, who killed himself in 2010 shortly after being prescribed paroxetine for mild situational anxiety. Here is a link to an article on MIA related to Wendy Dolin’s invaluable work.)

All of this was new. None of this was remotely part of the condition that led to the initial prescription of this ‘worrying chemical’, as I heard it so elegantly described recently. It took me a long time to realize it wasn’t me, it was the drug. Those who have been down this road know this story very well.

It is the drug, and the fact that I am leaving it.

So much is still unknown, which is shocking when you think about just how many tens of millions of people (of all ages) are on these drugs worldwide. The systemic nature of withdrawal suggests there is a whole lot we don’t understand about how neurotransmitters work, inside and outside the brain, and how they interact with one another. Serotonin does so much more heavy lifting in the body than modulate mood. Some of these drugs, like paroxetine, also interfere with other chemical messengers (e.g., acetylcholine), but we don’t know what the long-term effects are or what happens when you stop the drug.

Almost nothing is known about people like me, first prescribed in the shining-future moment of magazine cover stories when SSRIs seemed a silver bullet for complex mental issues, and then left to rot for decades. There are no studies, not yet.

I have no illusions about the road ahead. But I count myself extremely fortunate, for several reasons.

First, I found a supervising psychiatrist with tapering experience, which is vanishingly rare in Australia. Thanks to my neuroscientist colleague, who contacted Mad in America founder Robert Whittaker, I was given the name of someone in Australia, in another state. Later, I migrated to a psychiatrist in Adelaide, my home city. I read that Dr. Jon Jureidini was doing research into patient experiences of antidepressant withdrawal with a view to making submissions to government. I contacted him, and he graciously took me on.

The Australian Government doesn’t recognize that withdrawal from psychiatric drugs is anything to worry about for the overwhelming majority of patients, so doctors here know only what the pharmaceutical companies and the expert advisory bodies influenced by those companies want them to know, which is effectively nothing useful to the patient. In the prevailing Australian Government view, withdrawal symptoms affect a small minority and probably represents relapse to the original condition. This view is badly mistaken. I understand this knowledge-poor stance is common the world over. It cannot, must not stand.

Second, I had an excellent psychologist with whom I was already working; she was and remains a vital help. I have more than three decades of Buddhist training and practice under my belt, so I know how to work with my mind, even if I am sometimes unable to. My research area concerns biological cognition, so I also know about neuroplasticity, the positive and negative value of conditioning, and a bit about the nature of the physiological stress response. In short, I was primed and supported for the work ahead.

Third, my general practitioner was willing not only to listen but also to do her own research, and quickly came to an understanding that this is something that needed managing, so we both are on a learning curve. Her interest in and enthusiasm for learning in this area has become infectious—the Maudsley Deprescribing Guidelines were purchased by the clinic at my recommendation—and another young doctor in the practice is following developments closely.

Fourth, I have developed a close working relationship with a compounding pharmacist because there is no other way to obtain the vanishingly scant dosages necessary to taper fully, which are unavailable in Australia. We have had multiple discussions. She has provided me instructions for the prescriptions my doctor writes and is investigating her own ideas about how to deal with the small-doses issue, including the possibility of making strips.

My doctors and my compounding pharmacist appreciate the tsunami of suffering headed our way when people on these drugs, their doctors and governments wake up to the reality of what it means to leave them for a substantial proportion of patients. They are making efforts to be ready to help when the scale of the fallout from this global, decades-long experiment in medicating the human condition—under the intense stressors of the economic and technological cultures we have constructed, with drugs we don’t understand—becomes clear.

Finally, I am surrounded by people who hear me, support me, and want me to be well. I feed them information from my explorations, and they feed me. This included an invitation to hear Mark Horowitz, lead author of the trail-blazing Maudsley Deprescribing Guidelines for psychiatric drugs with his own withdrawal story, at the University of Adelaide on 25 July.

This was a life-changing experience, for me and my husband. Personally, I was stripped of any illusions about how rugged this next phase is likely to be, and how long it may take for my physiology to recover after I am finally off the drug. I’d rather know. Knowledge is power, which is particularly important when you don’t feel like you have any, or much.

As a sufferer of medication-induced trauma, I was thrilled to see the Royal Australian College of General Practitioners (RACGP) accept the Maudsley Deprescribing Guidelines during Horowitz’s visit. This means general practitioners across Australia will be advised of their existence and learn about the important and rapidly growing body of supporting science, inspired significantly by patients failed by the medical establishment who sought and found help through their peers on online forums.

Most of the antidepressants taken in Australia are prescribed by GPs. Despite the Lucky Country’s global reputation for being a laid-back and generally happy people, we have the second-highest usage in the OECD. To facilitate the roll-out of the Maudsley Deprescribing Guidelines, the Wilson Foundation—a private family foundation committed to improving long-term mental and physical health in Australia through system change—is providing a number of the e-book version free to members of RACGP and other peak practitioner bodies.

So things are moving. From a zero base, yes, but they are moving. Whether the equivalent peak body for psychiatrists in Australia and New Zealand follows the RACGP’s lead remains to be seen.

The experience of feeling trapped in the tempest of a mind deranged by drug withdrawal has been salutary. I listened to Wallace’s ‘This is Water’ commencement address again just now, the first time in years. I recommend it as a modern paradigm for reframing experience, which at the end of the day is all we can do or be ‘eaten alive’.

I wept for the loss of this mind, which had so much to give to others. I now know what it is to feel psychotic, to be in hell. I know what it is to harm myself, to want to die.

David Foster Wallace is gone, but I am here. I don’t know what is up ahead, but I will meet it, whatever it is.

This is not to let the pharmaceutical companies, the government drug-approving bodies, and the doctors who write the scripts without thinking off the hook. Speaking only for me, I know in my bones that anger will not help. Given my obsessive tendencies, it will poison me. That road leads to horror, and I have had enough of that. It is my choice not to revert to my default way of thinking, so I am honoring Wallace’s advice to the Kenyon College graduating class.

My hope is that what I have written here will be of benefit. We make meaning through our stories, to make it through. And so many of us will need to make it through in ways never anticipated, much less imagined.

To paraphrase Wallace’s last words to the Kenyon College Class of 2005: We will need way more than luck.