But 100 milligrams of fluoxetine is a whopper of a dose, and when I relapsed even on that, sometime in 2005, I finally switched to another serotonin (and noradrenaline) booster, venlafaxine. This I did with real regret and fear, and when that still didn’t work, my psychopharmacologist upped the drug’s punch with the atypical antipsychotic olanzapine, which also increases the availability of serotonin at the synapse. For a short time, as I recounted earlier, I replaced the olanzapine with lithium, but ultimately the lithium did not keep my depression away, as I’d so hoped it would. Thus I went back on olanzapine. The combo has worked wonders for my mental state, but the venlafaxine gave me high blood pressure, necessitating that I take another drug called lisinopril to bring my blood pressure back to normal.
As I’ve indicated, the problem with the olanzapine, both before and after lithium, was that it so intensified my appetite that I was beyond satiation, such that the mere mention of food caused my mouth to water. I would eat marshmallow fluff straight from the jar and wolf down multiple Mexican enchiladas filled with rotund beans and covered in mole sauce. Yes, I was warned about weight gain in connection with olanzapine, but I had no way of truly comprehending how much my body would balloon and how badly the accumulation of internal fat would damage my organs and put me at real risk for a stroke or a heart attack. A single warning from a single doctor when I was in the depths of despair could not adequately convey the message that by swallowing this new drug I was effectively agreeing to deeply damage the body upon which I rely to survive. As the olanzapine toyed first with my metabolism and then with my body, my weight went up, up, up, with the end result that I am now an overweight diabetic. High blood sugar is destroying my eyesight, so that without glasses everything looks fuzzy, with ever-stronger lenses necessary for me to get a clear view. At the back of my mind is the fear I will go blind. When I see the doctor, he checks my feet very carefully because diabetics often get festering sores from poor circulation and in the long run risk amputation. My high sugar has also caused my kidneys to malfunction, so that my mouth is always thick with thirst. My urine, far too infrequent, is thick with sediment. And my blood lipids, dangerously high as a result of olanzapine, put me at risk for pancreatitis and coronary heart disease.
To put it bluntly, I am not ageing well. I am unhealthy, and this is largely due to psychiatry’s drugs. And yet I cannot live without these drugs. After more than thirty years of a steadily rising dose and an increasing number of drugs, I am quite certain my brain has been permanently altered and that my neural systems would not be able to function without these daily doses. At times, scared of dying before getting to see my children have children, I have tried to go off my drug buffet, but the withdrawal has been physically horrible and mentally dangerous. The depression has been so deep that I once bought a gun, and another time wrote suicide letters to my children, which I later sealed, undelivered, in a zip-locked bag. Eventually I gave up the chase and went back on my medications, which have returned to me my mind while wiping out my body and, in so doing, have all but proved René Descartes’s claim about the mind–body split. I often wonder what would have happened to me had I never begun taking imipramine, or fluoxetine after that. Would it have been possible for me to move out of the depression on my own? There is of course no way to know. But given my experience, given the fact that I am dying as I live, dying more quickly than I would be were I not sustained on these drugs, I cannot give them an unqualified round of applause.
The Brain Bank
The Harvard Brain Tissue Resource Center at McLean in Massachusetts, known colloquially as the Brain Bank, collects people’s brains upon their death and studies them, searching for the flaw that is schizophrenia, for the telltale tangles of Alzheimer’s, for the beautiful, rich dendritic connections that mark a healthy cortex.
One day I found myself calling them, and when someone on the other end answered and said, ‘Brain Bank’, in a crisp voice, I was suddenly unsure of what to say. I stammered out a hello, followed by silence, and in the silence the static popping on the line was the only thing connecting us.
‘Brain Bank,’ the person said again, as though I had not heard.
‘Yes,’ I said. ‘I know.’
‘Can I help you?’ the person said, and I realised I could not tell if the voice was male or female and suddenly I feared I was talking to a computer when what I needed was a human who could help me through whatever it was I had to say, to give.
‘I am calling because I’d like to . . . to . . . donate my brain,’ I said, the last three words spilling together in a rush.
The person on the other end did not respond and again I stood there listening to the crackle on the line, looking out my large window at the apple tree, where clusters of reddening fruit studded its beautiful branches.
‘Donate. My. Brain,’ I repeated, articulating each word, suddenly, strangely, emboldened.
‘Okay,’ the disembodied voice said. ‘You can make the donation online.’ And then the voice gave me the Web address and, poof, was gone.
I stood there stunned, holding the phone, which after some seconds started to beep frenetically. I hung up and went online and once at the site filled out the forms that will allow McLean, at the time of my death, to cut a wide hole in the top of my head and remove my brain, after which they will stuff my empty skull with cotton and sew up the incision so that no one at my open-casket funeral will know. Meanwhile, back at their laboratory, my brain will be halved, each hemisphere preserved in formaldehyde until a scientist is ready to cut the delicate slices of neural tissue that might give some clues as to what these drugs really do after decades of use. This is my contribution to the psychopharmacological snarl we are in, the only way I can think to really and truly help. In the meantime I will find some way to live with my rising sugar, my failing eyesight, my fading memory and the occasional motor tics that cause me to jerk in weird and unsettling ways.
Etchings
Now that I am divorced, I live part-time with my two children and full-time with my new domestic partner and our four horses in Fitchburg, Massachusetts, on 32 hectares (80 acres) of field and forest, where apple trees line the sides of the driveway and orchards spread as far as the eye can see, growing up and down hills alongside stately barns painted a bright red and crisp white, with picturesque horses burnished to a rich gleam. In effect, we have no neighbours here, making the evening darkness that much deeper. The nearest house is probably 3 hectares (8 acres) away. At night the tiny tangerine squares of its windows glow with a distant warmth. It’s hard to meet people in the country, but our house, just recently raised and built, has the feel of the many human hands that helped to put our abode together.
If you go out back, make a left, walk through our pasture where the rudbeckias swing in the wind, trudge up the hill where rocks maybe millions of years old protrude, pass through the forest where your footsteps on the golden pine needles may be the only sound, you will eventually come to a small cemetery, surrounded by a black iron fence and a filigreed gate that looks like dark lace but is tough to the touch, and cold. Open the gate and the hinges squeal in protest, but you can step into the sacred space where the gravestones are worn by wind and weather. Each one is inscribed with something different but all profess love. Here Lies Our Dearest Mother. May Abner Find His Way on Wings to Heaven’s Pearly Gates. All of these graves are from the eighteenth and nineteenth centuries. My children and I have walked among the stones and trapped the designs on their surfaces – poems, angels, clocks – by taping tracing paper to a grave and rubbing sideways with a shorn pencil. The etchings give off a ghostly feel. They flutter in the wind, a reminder that even in tiny country towns, thousands have come before us in this ancient world whose first light was struck, like flint against steel, in a blue beam billions of years ago. At home, I would look at our etchings and wonder about the people who lay beneath the gravestones. What had they done when their eyes failed them and there was no such thing as corrective lenses? What h
appened when the tooth cavity gave way to rot and the nerves pulsed in pain?
I know that depression, which has been recorded ever since the written word came into existence, has been treated in all kinds of ways that are bizarre to our modern minds. In the time of Philotimus, a notable Greek doctor several centuries BCE, sufferers complaining of a light head were instructed to wear a lead helmet in hopes of a cure. Chrysippus of Cnidus, a contemporary, believed that people with depression should eat more cauliflower while carefully avoiding basil because it could incite someone to insanity.
Depression’s treatments have morphed over time, as has the disease itself, reminding us that suffering is never stagnant, that even discrete illnesses take the shape of the culture’s currents. In the 1st century CE those afflicted by depression often felt it as a severe sort of body dysmorphism. Rufus of Ephesus, another Greek doctor, ministered at different times to all of the following confused souls: a man who believed himself to be headless, a patient who thought he was a piece of pottery and a third who believed he had sloughed his skin like a snake and it was peeling from his body. There were patients who seemed possessed by psychotic delusions, as in the baker who believed he was made of butter and would melt away in the sun, or other patients who believed that they were made of glass and thus were incredibly careful not to sit down, convinced that they would crack or break apart. Treatment consisted of herbs and bloodletting and occasionally of sexual stimulation of the genitals, whose ‘rotting unreleased sexual fluids’, it was believed, could give off ‘noxious fumes’ that would disturb the brain. A millennium later, with the rise of Christianity, from the Middle Ages onwards depression was seen as a sin and was treated with exorcisms or worse. Some demon, the thinking went, had inhabited the body of the depressive and he could be cured only through religious ritual or punishment.
The prior treatments for depression seem quaint, almost poetic. There was Rufus’s ‘sacred remedy’ for instance, a liquid concoction of ‘colocynth, yellow bugle, germander, cassia, agaric, asafoetida, wild parsley, aristolochia, white pepper, cinnamon, spikenard, saffron and myrrh’, all mashed together and sweetened with honey and ‘given in four-dram doses in hydromel and saltwater.’ If medicines such as these worked, they did so because patients believed they would work. We know now that a menagerie of spices and herbs mixed with honey cannot possibly combat the deep despair that depression is. And yet for a time it did. There may well come a day when people look back at the cures of our own age and see them as deeply delusional, evidence of primitivism. Potions that started as a simple string of numbers in the chemist’s workroom? There may come a time when we can so directly manipulate gene expression that depression becomes a button we can simply turn off, or when neural interventions such as deep brain stimulation or trans-cranial magnetic stimulation will wipe away depression as if it were a stray mark on the blackboard of the brain. Who’s to say what will happen, and when and how?
In the meantime, we have our less-than-perfect tablets and our choices, which are as limited as the medicines themselves. One can choose to wait depression out and hope that in the process one’s brain won’t be irreparably scarred from the pell-mell of stress chemicals spilling inside the head, or one can submit to pharmacological intervention and hope to remain unharmed in the process. Is there not a third way, another option, an exit? Therapy? Church? Yes, these are also possible avenues, but maybe not for deep depressions, the kind that comes in the full glare of the summer sun and clutches your throat and takes you down in daylight.
I touch the gravestone etching my children and I have done. The paper is so thin, so insubstantial, every bit as vulnerable as that scrap with its cry for HELP that I came across beneath the pillow in room 332 at the abandoned asylum. I don’t believe in heaven and I don’t believe in hell of the sort that Christianity describes. I do believe it is possible, though, to lose your mind and I also believe that there is no suffering worse than this. Because of that, when one emerges from a deep depression, the whole world looks brand new. You touch everything tenderly, and with wonder. The streets gleam. The cars shine like lollipops. The trees shoot upwards and lose themselves in lace.
This feeling is not due to fluoxetine, or to imipramine, or to any other chemical concoction you might be taking. It happens because depression, when it departs, leaves gratitude in its place. Your life becomes a new bud, a leaf. No drug can match this high, and it is here where you are your best, your most human, your healthiest self. Celebrate softly. Go ahead and sing. I do, even when I know I am withering away. It’s another day down, another day done, in gratefulness.
5
Placebos
The Dancing Disease
Placebos are extraordinary drugs. They seem to have some effect on almost every symptom known to mankind, and work in at least a third of patients (usually) and sometimes in up to 60 per cent. They have no serious side effects and cannot be given in overdose. In short, they hold the prize for the most adaptable, protean, effective, safe and cheap drugs in the world’s pharmacopoeia. Not only that, but they’ve been around for centuries, so even their pedigree is impeccable.
– Dr Robert Buckman and Karl Sabbagh (1993)
Mr Wright
In 1957 psychologist Bruno Klopfer reported on the amazing case of a man he called Mr Wright. Mr Wright was suffering from advanced cancer of the lymph nodes. Tumours the size of oranges studded his skeleton and wound throughout his organs. He was so near death that he was more malignancy than man, his face pale on the pillow, an IV plunged into one of his stringy veins.
Some people, as they near the end of a long battle with cancer, their hair gone and their teeth loose in their sockets, are ready to exit, exhausted by the demanding treatments, by the burn of radiation and the poison of chemotherapy. But Mr Wright, because he had a severe anaemic condition, was not eligible for the treatments of the day, which were radiotherapy and nitrogen mustard. He had wasted away all on his own, without the help of cures that also kill. But his will to live, his desire to see the day, was strong, and the shadow of death that fell across his hospital bed, a dark hole into which he would soon dwindle and disappear, terrified him.
Then one day Mr Wright – ‘febrile, gasping for air, completely bedridden’, according to his doctor – overheard people talking about a new cancer cure called Krebiozen, a horse serum available in the United States, which was being tested at the very hospital he was in. Hope sprang up like a stalk inside him. He begged his doctor for a dose, and his doctor, although doubting the drug would help at this late stage, nevertheless loaded his syringe and took his patient’s wasted arm.
Three days passed as Mr Wright lay quietly in his hospital bed. On the third morning after the shot of Krebiozen had been administered, his doctor returned to examine him, and an incredible thing had happened. Before the doctor arrived, Mr Wright had swung his feet over his hospital bed and for the first time in months stood up straight on the floor, strong enough to support himself, to walk, even to stride, which he did, out of his room and down the ward to the station around which the nurses flurried. The doctor found this man who had been at death’s door now joking, flirting, cavorting. X-rays showed that the tumours had shrunk from the size of oranges to golf balls – having melted ‘like snowballs on a hot stove’.
No one could quite believe it, but no one could deny it either, because here was the man, once washed out but now ruddy with health and hope. Within ten days Mr Wright was discharged from the hospital, cancer-free, and he went home to pick up where he had left off before cancer came to claim him, stepping back into his life as if slipping into a perfectly fitted suit. He returned to work. Perhaps he went out to dinners, eating red slabs of steak and whipped potatoes with slabs of butter melting at their crests and salads with frilled lettuce and crimson tomatoes sliced into wheels arrayed on a plate of crystal. Perhaps he drank fine wines and champagnes where the bubbles rushed to the top when the cork was pulled out with a satisfying pop. He was here. He was alive and lo
ving it.
Days passed, weeks passed and Mr Wright remained free of malignancies. Within two months, however, reports came out in the news saying that the Krebiozen trial had concluded and the drug was worthless. Soon after that Mr Wright’s tumours returned and he was back in the hospital, once more staring at the drain hole of death, at the shadow falling across his bed.
His doctor then did something that doctors today would never be permitted to do. He told Mr Wright a story, a lie. The news reports, the doctor said, were wrong. Krebiozen was in fact a potent anticancer drug. Why, then, Mr Wright wondered, had he relapsed, and so badly? Because, his doctor said, Mr Wright had unfortunately been given an injection of the stuff from a weak batch, but the hospital was expecting a new shipment and it was guaranteed to be two times stronger than even the most potent Krebiozen to date. Mr Wright’s doctor delayed administering anything to his patient so that his anticipation would build. After several days had passed, the doctor rolled up Mr Wright’s sleeve, Mr Wright offered his arm and the doctor gave his patient a new injection – of pure water.
Again hope made an entrance. Mr Wright let all his tumours go. Once again they shrank and disappeared until no trace of them could be found in his body, and once again he left the hospital. It’s not hard to picture him dancing his way through his days. A second remission! Mr Wright lived for a further two months without symptoms and then, unfortunately for him, came another news report. The American Medical Association, after numerous tests on patients, issued its final verdict on Krebiozen, confidently declaring the drug to be useless. Mr Wright’s tumours reappeared, and this time, within two days after his readmission to the hospital, he was dead.
The Drugs That Changed Our Minds Page 22
