For Lucas Henry Alexander
One and Only
Contents
Author’s Note
Introduction
1. Chlorpromazine: Awake!
2. Lithium: A Salted Stone
3. Early Antidepressants: The Three-Ringed Molecule and the Psychic Energiser
4. SSRIs: The Birth of Fluoxetine
5. Placebos: The Dancing Disease
6. Psilocybin (Magic Mushrooms): God’s Flesh
7. MDMA (Ecstasy): The Marriage Medicine
8. PKMzeta/ZIP (Memory Drugs): The Spotless Mind
9. Deep Brain Stimulation: Who Holds the Clicker?
Epilogue: Where We’re Headed
Acknowledgements
Notes
Select Bibliography
Index
Author’s Note
Everything in this book is true. However, there are certain instances in which I have changed the names and identifying features of people I interviewed, at their request and to protect their privacy. There are other instances, however, in which names have not been changed. I allowed each subject to make that decision according to his or her comfort.
All autobiographical material emerged from my memory of events that sometimes happened as many as forty years ago or more. I composed my memories as they occurred to me and checked their accuracy by relying on family members who were with me at the time, when this was possible. I have made every effort to be accurate while also acknowledging that memories are friable, delicate webs held together by neuronal connections and chemicals we do not yet fully understand.
Introduction
I wrote this book because I have been taking psychotropic drugs for thirty-five years, with different drugs or drug combinations during different decades of my life. Some of these drugs have been miraculously effective for a time, while others have done nothing but leave me with side effects – increased sweating, a rapid heartbeat, a mouth so dry my teeth began to rot in their sockets. Of every doctor who has ever prescribed me a psychotropic drug I have asked the same questions: how does it work? And, more existentially, how do you know I need it?
What did I mean by that second question? I meant that while I had symptoms galore, I had no physical proof that anything was wrong with me at all. Several times during my adult years, for instance, I’ve wound up in the A&E department for a bad case of strep throat, and each time the doctor has instructed me to open my mouth and stick out my tongue while he peered into me with a torch and swirled a cotton bud around in the redness, after which he smeared my cells on a slide that would be tested to confirm the diagnosis and I would be prescribed the trusty cure, an antibiotic. Similarly, I keenly remember the morning of 26 September 1998, waking at dawn and popping my ovulation thermometer into my mouth, beep, beep, my temperature still high, a sign I might be pregnant. The night before, in the bathroom, I had lined up the kits, not one but three, all with their little wells and the plastic cup to collect my urine. I got out of bed carefully, so as not to wake my husband. The bathroom was dark, the sun just hitting the horizon and extending a single ray into the sky. I peed into the collection cup and then, using the dropper, deposited my urine into the wells and watched, transfixed, as the test wands changed colour, going from white to blue to red. A single line emerged, and then – was it? did I see it? – a second line began to form, faint but definite. The tests were telling me the most important piece of news I’d received so far in my life: I was gravid, with child, on the edge of my motherhood, a knowledge that filled me with fear and ecstasy. Because I’m compulsive by nature, I took a test every day for a week, watching the second line, the yes line, grow bolder and bolder, a sign that my HCG, a hormone secreted in early pregnancy, was rising.
There are no such dependable tests for determining depression. The truth is that while we have dozens and dozens of psychiatric drugs, while antidepressant use in England has doubled in just a decade, we still have no actual blood or urine or tissue test with which to determine the particular psychiatric illness a person suffers from. The body or brain of someone suffering from severe depression may very well be deeply different from the body or brain of someone who has what we call a normal mood, but if physical substrates of mental suffering do exist, psychiatry has so far been unsuccessful in definitively finding them. Therefore, when you take a psychiatric drug, you do so on faith. It is a great leap of faith, in fact, to take a drug when the doctor cannot actually find anything wrong with your body. Yes, you may be sleeping more or less than usual. Yes, you may be eating more or less. But these symptoms do not give rise to any particular chemical malfunction in your urine, your blood or your skin.
All I know for sure is that in my case, when I took my first psychiatric drug – imipramine for depression – at nineteen years of age, my body seemed to be healthy, even if my heart hurt. Now, thirty-five years and twelve drugs later, my kidneys are failing, I have diabetes, I am overweight and my memory is perforated. As the years close in on me, my lifetime now seems seriously foreshortened, not because of a psychiatric illness but because of the drugs I have taken to treat it – with diabetes and kidney trouble being just a couple of the well-documented side effects associated with the powerful antidepressant and antipsychotic olanzapine, a drug I’ve relied on like some do a walking frame, propping me up so I can sail through my days, going as fast as I can in the hope I will get everything done before I die. It would not be an overstatement to say that on the one hand, psychiatric drugs have healed me, while on the other, they have taken my life and my health and ruined me, drawing death near. Because of the diabetes, I get sores on my feet, festering sores that ulcerate and ooze. At fifty-four years old, my body is in the shape of an octogenarian with issues.
But I am not angry at psychiatry for limiting my life in the way it has, even as my decaying body scares me to my roots. Although the first psychotropic I took did me no good, the second one felt as if it had hurled me to heaven, where I lived a gilded life, rich and buttery, producing books and babies as fast as I could, because I knew the fluoxetine would wear off, and eventually it did. The next drug, the antidepressant venlafaxine, also eventually stopped working, and thus I became a consumer of polypsychopharmacy, sustained on a potentially lethal cocktail of drugs. My particular mix includes the risky olanzapine, another antipsychotic called aripiprazole, venlafaxine, the anti-anxiety medication clonazepam, the stimulant lisdexamfetamine, and probably one or two other tablets I’m forgetting because there are so many. Because of these drugs, I am able to think, to compose and to move productively through my life, although I do struggle with aphasia. What’s a little memory loss, though, in exchange for a robust ability to cope?
My marriage of two decades recently dissolved, and yet I get up each day and find joy in being alive. That’s what I call a robust ability to cope. That’s what I call proof that these drugs work, maybe too well. Shouldn’t I be shedding tears? I do, of course, but what I don’t do is get sucked into the quicksand of despair. I feed my chickens. I ride my ponies. I make my gardens, which are right now blooming in the spring’s first warmth, the salvia growing out of the ground in purple spires, the lupin sending up its coloured cones, the false indigo blooming its excess of blues.
Thanks to psychiatry’s drugs, I have a mind that can appreciate the beauty around me, but then, thanks to psychiatry’s drugs, I am dying faster than you are, my body crumbling as side effect after side effect sets in, messing up my metabolism, wreaking havoc with my glucose, polluting my urine. Thus in my world I live according to Descartes’s central principle: my mind on the right, here and healthy, my body on the left, here and weak. Indeed his essential point, that there is a division between b
ody and mind, proves to be terribly true in my case.
I wrote this book in part so I could examine some of the drugs I take, and others I never have. I wrote it in part hoping I would find, in my research, that there really are physical substrates to mental suffering. If psychiatrists could find them, it stood to reason there was a chance that drugs could be systematically made to correct the problem at its source, whereas now our psychiatric drugs are made too often in the dark, as serendipitous mistakes, with researchers trying a little of this and a little of that. The end result is that all of our drugs are in some sense dirty, casting their effects over the entire ball of the brain so that nothing is spared and the imbiber is left with the dreaded side effects. At the very least, finding the physical substrates to mental suffering would mean that one could be sure of a bona fide disease with a clear aetiology and course.
I wrote this book hoping I would encounter ample research on the long-term side effects of, say, the SSRIs, the selective serotonin reuptake inhibitors, which have been around for thirty years now, long enough for some good longitudinal studies to have been done. But I found very little. When it comes to examining these blockbuster tablets over the long haul, I met instead with an eerie silence, and almost no science at all. When it comes to studying side effects, virtually all we have are the original studies that Eli Lilly did to get Prozac (fluoxetine) approved in the first place, along with similar short-term studies by others in the years since, despite the fact that many patients, like me, have been sustained on a serotonin booster for decades. Why are so few really looking at the long-term effects? What is it we’re afraid we’ll find? I have grappled with this question and have tried to proffer some answers in this book.
I confess that I came to this book with a bias. I came as both a patient and a practitioner (I have a doctorate in psychology), and thus was hardly a blank slate when I began my research. My own experience has coloured what I chose to focus on and therefore what I’ve found. Luckily for me, however, my bias was not so severe as to blind me to some very sweet surprises. My assumption, when I started this book, was that drug discovery in psychiatry was dead, that through the ascension of ‘Big Pharma’ it had been reduced to a series of ‘me too’ concoctions geared towards profiting from variations on already approved medications, with nothing original in the pipeline. What I discovered, however, was a group of researchers remaking the field by reviving psychedelics and employing them in novel ways for those suffering from psychic pain. This is the far frontier of psychiatry right now, and I believe it promises rich rewards. A handful of practitioners are reaching back into the past and, in doing so, changing the future of a field that is desperate for innovation. While some psychedelics are old, even ancient drugs, they are in every instance being used in ways that are refreshingly unique and that offer relief to significant subsets of patients, many of whom would otherwise be out of options. MDMA, commonly known as ecstasy, shows potential in the treatment of social anxiety in autistic patients and for those suffering from post-traumatic stress disorder; psilocybin (the active agent in so-called magic mushrooms) can ease the anxiety that attends an end-stage cancer diagnosis and thereby remake the way we die.
The drugs I chose to write about in this book picked me more than I picked them. I was at no point aiming for something comprehensive but rather something riveting. I followed a linear timeline to some extent, but there is also a thematic thread that runs through these pages: these drugs tell the story of psychiatry’s trajectory over the centuries, like lenses held up to the field of study. Through them we can see what there is to see, and observe a biology-based profession fall prey to psychoanalysis and then seize science again in a move that made the profession at once narrower and wider. Yes, biology is crucial to psychiatric medicine. After all, a single cell contains a whirling world. But the biology-based psychiatry of our day and age misses the need we all have to make myth out of the fabric and cuttings of our lives. Patients rarely seek psychoanalysis any more, in large part because talking therapies such as cognitive behavioural therapy (CBT) are preferred. This has made the field smaller than it once was, when Freudians and other theorists ruled the roost. I am not arguing for psychiatry to be led once more by the psychoanalysts, but the questions remain: where do patients go to be heard in a profession increasingly adopting the language and structure of science? Where do they go to sculpt, to create and revise the plot of their tangled lives?
I wrote this book because I love stories, especially ones that have not been fully told. While it was easy to get the details of how the earliest antipsychotics were discovered, for instance, I’d yet to read a really good account of the magic dye methylene blue and all it led to – the blue dreams it cast. As with each of my books, my goals were strictly narrative. I wanted to bring the seminal drugs of this century and the previous century forward as stories that could be told and retold, read and reread. The science is accurate, but in every instance I have endeavoured to embed it in the time-honoured tradition of telling tales, with a beginning, a middle and an end, with heroes and losers and plenty in between, struggling to make their way.
In a very real sense, my body holds a lot of the stories I’ve told here. It holds the history of psychopharmacology, with all the drugs I’ve taken having left their grooves in my flesh and in my brain, wherever they have worked or failed to work. Thus I wrote this book, in some inchoate sense, to discover my own body – its beginning, middle and end.
1
Chlorpromazine
Awake!
Breaking In
It is easy. I climb a crumbling low stone wall and push my hand through brambles to find an open window covered with torn strips of a metal screen, the trim rotten, the blistered white paint falling in jagged flakes as I part the remnants of the screen and, balancing carefully, thrust one leg through the old aperture. This very window was once barred, but now, lifetimes later, it yields with barely a nudge. It is as if this old building – heavy with history, loaded down with dreams and screams and maniacal memories – wants me to know all the horror it holds. As if it yields to me because I come as some sort of witness to days long gone, to a time when we treated the mentally ill in ways we might call mentally ill, plunging them into ice-cold baths, or nosing needles under their sunken skin to dose them with so much insulin that they hurtled into fathomless comas, lying on cots or in iron beds, their minds frozen until light finally made its way in and the patients re-emerged. If insulin didn’t cure patients of their monsters and bi-headed beasts, we sometimes severed the fibres of their burning brains, leaving them docile as dolls.
Inside, this old asylum is mostly dark. Outside, it is a beautiful summer evening redolent of roses that grow along the low stone wall and pour across the upper fields overtaken with white-headed weeds and pink clover. Years and years ago, these same fields were closely mowed, as if by controlling the scalps of grass the staff could somehow also leash the brains of the madmen and women this institution contained. The grounds were quite lovely back then. The buzz-cut green and the exuberant roses and the stone walls lent a bucolic look that stood in stark contrast to the insides of the actual hospital building, where I stand in the late dusk of a June day, the sky outside the colour of periwinkle. The outside smells of damp summer, the inside of mothballs and something stale but impossible to name.
By crawling through the window I have officially trespassed on state property, and yet I feel I must see these haunted halls. As my eyes adjust to the dimness of this dead place I can make out doors, dozens of them lining a corridor littered with medicine trolleys. The impression is of a place humming and hurried one moment and abandoned the next, as if an announcement came down from above to jump ship and people left everything in mid-motion, the trolleys haphazardly strewn about, the prescriptions now faded and lying curled on the floor. I bend to right an overturned flask and then pick it up, holding it to the evening’s last light, against which is visible a faint golden glow from the liquid it once contained. I set
the flask aside, then make my way forward through the murk and bump into a stack of books, toppling it to release a flutter of wings and the shrieking of birds – tiny birds with yellow waistcoats who have built their nest amid the disintegrating tower of tomes.
Metal beds on wheels flank the long hall, with its aged linoleum floor warped and bulging, broken in spots. The walls, painted a seasick green, are shedding, and there are cupboards stacked with rolled-up towels, and rusty medicine cabinets. A while later, having ascended the stairs to the fourth-floor hall, I pass a canvas cot, and then, in a small room, a long bed over which are suspended the wires and suckers that were attached to shaved skulls for electroconvulsive treatment, current fed through the cranium that for some reason seemed to have some positive effect.
Crammed into a corner on the highest floor, the fifth, is a tiny square of space with a single caged bulb screwed into the buckling ceiling, the damp dirt floor beneath it clawed by who knows how many hands. This could well have been the ‘quiet room’, where patients were sent when their behaviour could no longer be controlled. Down below me, and beyond the fields that surround the structure, the city streets thrum. Through one of the dirt-speckled windows I can just make out a pair of women pushing pushchairs. A man walks by with a baguette tucked under his arm as vendors hawk their wares beneath bright umbrellas striped and swirled and spotted – a picture of perfection that serves only to deepen the gloom of this building soon to be razed, sent tumbling into a heap of broken brick by the crane’s wrecking ball.
Founded in 1833, this state hospital was once a bustling institution, forty miles west of Boston. In the 1920s, ’30s and ’40s, this hospital, like a host of other mental hospitals (called then insane asylums) scattered around the US and abroad, was a place to send the crazed and ‘idiotic’, a place equipped with what today seem like terribly primitive tools to handle the screaming, sweaty bodies of men and women hounded by hallucinations in an era long before managed care and medication. A hundred years ago, even eighty years ago, very few people were confident that chemicals could mend the mind, which as recently as the nineteenth century was believed to dwell not in the brain but somewhere in a spirit or soul immune to chemical intervention. Those afflicted with serious mental illnesses – schizophrenia, bipolar disorder, severe depression and autism – often lived out their lives between the walls of hospitals just like this one, undergoing questionable cures that, while never intended to harm, rarely worked.
The Drugs That Changed Our Minds Page 1