The Cuckoo's Quest
What I remember most clearly is that while they were tying me down and tightening a rubber strap around my head, I smelled something that I immediately sensed was the aroma of a plane crash (although I have never been anywhere one): death, flaming petroleum and superheated metal. The small room resounded with an angry and unsettling hiss from an open valve that I assume was pressurized oxygen. I said, "Please don't give me the paralysis drug until I'm asleep." They clamped a mask over my face, and I passed out.
(March 2011) There are so many millions of courageous, resilient people who fly out of the cuckoo's nest and make normal, happy lives for themselves, but I'm still in that ramshackle old heap of twigs, usually in my bathrobe. It's a handsome, tailored man's robe (thanks, Mama!), so I can pretend that I'm being Garbo-esque rather than an old hag, as I wander from room to room, looking for something (but what?).
To those who emailed me, asking about my reference to ECT, it stands for electroconvulsive therapy, better known as shock treatments, immortalized vividly in the movie "One Flew Over the Cuckoo's Nest."
I had a month-long series of treatments -- three times a week -- back in 1997 (about 100,000 others also had them that year -- isn't that sad?). I couldn't think of anything else to do, after years of therapy and medication had failed to free me from a paralyzing, soul-killing depression. Every day, I felt doubled over with anxiety from the moment I woke up. My first thought was, "I can't do this anymore." I was overwhelmed and disoriented. A chronic sense of foreboding engulfed me; I dreaded everything. I didn't want to go anywhere, do anything or see anyone. Whoever coined the phrase, "Life's too short" was in a different universe than mine. For me, life is way, way too long. Every day is too long.
The only way in which ECT improved my mood was that I felt brave and decisive for choosing to do it, so it gave me a bit of short-term self-esteem.
Clinicians are uncertain about how ECT works. The electrical current causes grand mal seizures in the brain, and some theorize that these seizures alter brain chemistry. When I first decided to undergo ECT, I envisioned it as punitive, which seemed warranted. I wanted to flagellate my brain with shocking pain for being so pathetic and messed-up and for refusing to get a grip and display some dignity. Then it occurred to me that it might be more promising to adopt a gentler mindset, and so I began visualizing the electricity as something that would "light up" my mind, stimulate and reawaken it and leave behind a golden glow.
Tie me up, tie me down
During my treatment period, Joe drove me three times a week to LDS Hospital very early (it was still dark) in the morning. After I changed into a gown and an IV connection was inserted into the top of my hand, I got into one of those hospital beds that they use to wheel you into surgery, and I was taken into a room that seemed to be (and I guess was) an open ward from a way-bygone era. It was very large and dimly lit, and all four walls were lined with beds like the one I was in, but I was the only person there. An attendant gently laid a clean, warmed blanket over me, and tucked me in. They were very tender-hearted people. I felt like Hans Castorp in Thomas Mann's "The Magic Mountain," being ministered to at an old European sanitarium. The room was blue, and I think there was some sort of mural. But the vastness, the emptiness, the quiet and the "yesteryear" mood made me feel as if I were dreaming. I always had to wait for quite awhile, and I have come to the conclusion that doctors force you to wait to make themselves feel more powerful. In the good old days, they didn't need to use such silly strategies: People practically worshiped their doctors. But today, we patients are a bit cockier -- in part thanks to Google ("No, doctor, it is not my gallbladder...I've reviewed the criteria, and I don't meet them") (or, "Sorry, but your diagnosis is inconsistent with data released just last week in the New England Journal of Medicine") -- and doctors have been knocked down quite a few pegs by managed care, insurance companies, Medicare and now health-care reform as well. The practice of medicine has essentially evolved into a service industry, and doctors are answerable to way too many masters. I don't think they feel very exalted anymore, dashing from patient to patient as if they were hotel maids with 20 rooms to clean by noon. The thrill is gone. So they make us wait. It's their passive-aggressive way of saying, "Take that! Guess who's calling the shots!"
Anyway, there I go digressing again.I think the ECT did that to me: I start telling a story, and pretty soon I've got four or five going that are somewhat interwoven, and I forget what the point was to begin with.
An attendant finally appeared to roll me into the "surgery theater," which is actually just a little corner of an old room that has been curtained off. A psychiatrist and an anesthesiologist are there. The shrink isn't mine; my beloved, faithful doctor, Fred Reimherr, told me he couldn't support my decision to have this done. He said, "Your mind is too valuable to take such a risk." I respected and appreciated his perspective, but I found an MD who was doing shock treatments every morning, and so I signed up.
What I remember most clearly is that while they were tying me down and tightening a rubber strap around my head, I smelled something that I immediately sensed was the aroma of a plane crash (although I have never been anywhere near one): death, flaming petroleum and superheated metal. The air resounded with an angry and unsettling hiss, which I assume was from an open valve on some sort of pressurized gas -- probably oxygen. I said, "Please don't give me the paralysis drug until I'm sleeping." They clamped a mask over my face, and I passed out.
Running toward a plane crash with no plan in mind
Every time I went for a treatment, just before the anesthesia hit my bloodstream, I had a sort of dream that I was running toward that plane crash. It was nighttime, and the flames leapt upward and outward furiously. That smell was unforgettable. I kept thinking, even if I get there before it explodes, what can I do? Thank goodness, I was blissfully unconscious before I ever got that far. Maybe I would have rushed in and dragged out a couple of people. The local TV reporters would be all over me with their usual question: Do you feel like a hero? My response would be "Why do you insist on twisting every story possible into a tale of heroism, tragedy or miracles? Isn't there a more intelligent, constructive way of boosting your ratings than turning your newscast into a soap opera?"
But there I go digressing again. I'm tied down, there's that roar in the air and the plane-crash smell and then -- what a beautiful feeling -- I relinquish myself to oblivion.
The reason they paralyze you with drugs is to prevent the broken bones that used to be a common complication of shock treatments. During the brain seizure, the body responds with panicked surges of resistance. It is a horrifying thing to behold in old documentary footage: the agonized thrashing around of people who were already in so much pain. But now ECT has been nicely sanitized (at least I am told it has, although no one thought to videotape me) (that would have been interesting).
The next thing that happens is that you open your eyes in a rather pleasant state of mind, and usually a very kind nurse is right there. I was required to "recover" there for an hour or two. When I was assisted back to the lobby, and my parents or Joe were standing there, smiling at me and opening their arms, it reminded me of all the times I disembarked from a plane from New York City to find my loved ones waiting for me. I hugged them and said, "It seems like it's been forever."
The reason they paralyze you with drugs is to prevent the broken bones that used to be a common complication of shock treatments. During the brain seizure, the body responds with panicked surges of resistance. It is a horrifying thing to behold in old documentary footage: the agonized thrashing around of people who were already in so much pain. But now ECT has been nicely sanitized (at least I am told it has, although no one thought to videotape me) (that would have been interesting).
The next thing that happens is that you open your eyes in a rather pleasant state of mind, and usually a very kind nurse is right there. I was required to "recover" there for an hour or two. When I was assisted back to the lobby, and my parents or Joe were standing there, smiling at me and opening their arms, it reminded me of all the times I disembarked from a plane from New York City to find my loved ones waiting for me. I hugged them and said, "It seems like it's been forever."
Stark, mindless solitude
I was told that I should not live alone during this month of treatments, because of the cognitive side-effects, but I was fine, except that my longtime jogging route looked totally unfamiliar to me, and I couldn't tell whether I was headed toward or away from my home. The only thing that seemed warm and familiar out there were all my cat friends along the way, who came trotting toward me for their daily pet-down.
I have read many times that shock treatments are effective for 80-90 percent of patients and that memory problems are almost always short-lived. This perspective has lost substantial credibility as the self-serving nature of the "data" have been revealed. A study in the British Medical Journal found that at least one third of patients report persistent memory loss after ECT. The journal found that studies conducted by clinicians, who have a vested interest in the success of the treatment, are dramatically different from polling done by objective parties. In another study, 53 percent of patients reported persistent memory loss: loss of old memories and a limited ability to form new ones.
I have also read, though, that ECT has become a highly profitable and burgeoning industry -- on the verge of becoming a production-line delivery system -- and that it is being recommended not just as a last resort but also as a quick fix for people who are blue and bummed out, for young people who are incorrigible and for old people who are melancholy or hard to manage. The treatment costs $1,000 to $2,500 a session (each lasting just minutes), and typically involves three sessions a week for four weeks.. I am concerned that the biases of profit-hungry doctors and hospitals may have influenced reports of the treatment's effectiveness. Moreover, some sort of maintenance therapy -- either via ECT or medication -- is almost always required after the treatments.(according to a report in a 2006 Journal of Affective Disorders, ECT improves quality of life, when it is effective at all, for six months.)
As ECT increases, so do doubts
It's ironic that there has been an upsurge in the use of ECT just as the FDA is considering whether to keep ECT equipment in Class III, the highest of three risk categories for medical devices, or to shift it to a lesser-risk category. (In 1990, F.D.A. staff proposed declaring the devices safe for major depression, but never took final action amid an uproar by opponents.) If ECT devices remain in Class III, manufacturers will be required to submit information demonstrating their safety and effectiveness. Many feel certain that manufacturers would have a hard time meeting these most basic criteria and could be forced to pull the devices off the market.(The manufacturers "tend to be mom-and-pop operations,” said Dr. Matthew V. Rudorfer, a psychiatrist and top specialist at the National Institute of Mental Health. Wow -- that's reassuring.)
The FDA, after a two days of deliberation this past January, said it would take more than a year to make a decision. Manufacturers could then be given 30 months to submit proof of safety and effectiveness.
The psychiatric establishment overwhelmingly supports the use of ECT as more effective than medication and/or therapy. Duke University Medical Center's Dr. Richard Weiner, speaking at the hearings on behalf of the American Psychiatric Association, said ECT isn't a cure, but it's an important treatment option "to bring somebody out of an acute episode." The problem is, that's not the way it's generally used. And although it has clearly helped tens or even hundreds of thousands of people, and has certainly saved lives, the critics make some unassailable points. They say it's about time ECT devices were banned or given greater regulatory oversight.
“It’s all trial and error — it’s all experimental,” said Vera Hassner Sharav, president of the Alliance for Human Research Protection, an advocacy group in New York. “All the years it’s been controversial and there have not been clinical trials. Why not?”
Dr. Peter R. Breggin, author of more than a dozen books including one about electroshock and a consultant in personal injury cases involving drugs and the therapy, says he is the only American psychiatrist he knows who publicly opposes the treatment.
“It’s a big money-maker,” he said. “I would say if anything it’s been on the increase because there’s a market that’s been exploited, that is the elderly depressed women on Medicare. The reason for that is they’re covered, and there’s no one to protect them. What commonly stops shock treatment is a family member saying ‘over my dead body.’ ”
Depressed older people, Dr. Breggin said, can be helped more by a pet or conversation.
Last year, two psychology professors, John Read of the University of Auckland, New Zealand, and Richard Bentall of Bangor University, Wales, criticized electroshock after reviewing studies comparing it with simulated treatment. Their findings were published in Epidemiologia e Psichiatria Sociale, a peer-reviewed European psychiatric journal. “The cost-benefit analysis is so poor that its use cannot be scientifically justified,” Dr. Read wrote in an e-mail.
John Breeding, a psychologist who helped found a Texas coalition against electroshock therapy, says it's unconscionable that this procedure is administered with so little data on its safety. "A lot more people get hurt than helped," Breeding testified at the hearings. "I consider it just a really horrible thing to do to people."
Breeding added that Texas has banned electroshock for youths under 16 and requires second opinions for treating the elderly, giving it the strictest rules in the nation.
“It’s a temporary blunting of your feelings, he said, "so you feel better for a while, then you feel worse, and now you’ve got the memory loss and brain damage.”
The National Institute for Clinical Excellence in the United Kingdom has recommended limits on ECT, pending more information.
Shocking damage
New research indicates that shock treatments damage the brain in ways that had not been documented before. I have often wondered if being put under general anesthesia 12 times (or in some cases 200 times or more) isn't responsible for at least part of this damage. I read several years ago that general anesthesia dramatically increases the likelihood that a patient over 65 will develop dementia. I believe one can reasonably infer that there will be damage done to those under 65 as well, especially when it is administered repeatedly. (An article in the New York Times, which appeared just days after this post was published, reported that there are growing concerns about whether anesthesia, which is used in millions of surgical procedures involving young children each year, can lead to cognitive problems or learning disabilities. An FDA panel was to meet on March 10, prompted by research that suggests a correlation between anesthesia exposure and brain cell death.)
There is some good news to report, although the results are preliminary. In a study appearing in a 2008 issue of BRAIN STIMULATION, scientists reported that a new form of ECT is just as effective as older forms in treating depression but without any of the cognitive side effects found in the older forms. In the NIMH-sponsored study, what was characterized as "ultrabrief stimulus" markedly reduced adverse cognitive effects without decreasing the treatment's efficacy.Transcranial Magnetic Stimulation is also intriguing, although it remains unproven.
The ECT treatments had no beneficial effect on me. My depression remained intact. The "golden glow" I had hoped the electricity would leave behind never materialized. The weeks around the treatments are supposed to be devoid of memories, but I remember those weeks, and the ones that followed, as achy and gray. Everything seemed stark and cold. Every room looked like a stage set, devoid of a cast. Everyone around me seemed so real. But I didn't seem real.
Soon, the real impairment in memory and cognition -- the kind that is rarely mentioned -- set in, and it haunted me for years. I spent hours reading every day, and I was reading with real attentiveness and interest. Later that afternoon, all I could tell Joe is that it "was really good, but I can't remember what it said." There were so many times that I read an article or short story in the New Yorker or Harper's, and at some point, a phrase or image ("she had lavender polish on her toenails") would make me realize that I had read it before, usually within the past couple of days. I would spend hours with my parents, yapping about all sorts of pretty interesting stuff, and when Joe said, "What did you talk about over there?" I didn't have a clue. When Joe said "Wasn't Antelope Island beautiful in that early-morning light?" I was obliged to respond, "I don't know -- was it?" I checked films out from the library, and over and over again I would realize, often well into the movie, that I had seen it in recent months and nothing had stuck. I always felt so "there" in the moment, but it all flew right out of my brain, like a cuckoo out of the nest. It is very painful to have this happen to you. You begin to realize how important memories are to being a "self" and being alive. And you feel that those around you must be saddened to have "lost" you, because this state seems very much like Alzheimer's, but without the changes in personality. I believe -- and there are data that support this -- that taking Omega-3 supplements, as well as the passage of time, finally helped to repair my brain and make it feel kind of sparkly again every once in awhile. Even so, I truly can't imagine being happy.
The ECT treatments had no beneficial effect on me. My depression remained intact. The "golden glow" I had hoped the electricity would leave behind never materialized. The weeks around the treatments are supposed to be devoid of memories, but I remember those weeks, and the ones that followed, as achy and gray. Everything seemed stark and cold. Every room looked like a stage set, devoid of a cast. Everyone around me seemed so real. But I didn't seem real.
Soon, the real impairment in memory and cognition -- the kind that is rarely mentioned -- set in, and it haunted me for years. I spent hours reading every day, and I was reading with real attentiveness and interest. Later that afternoon, all I could tell Joe is that it "was really good, but I can't remember what it said." There were so many times that I read an article or short story in the New Yorker or Harper's, and at some point, a phrase or image ("she had lavender polish on her toenails") would make me realize that I had read it before, usually within the past couple of days. I would spend hours with my parents, yapping about all sorts of pretty interesting stuff, and when Joe said, "What did you talk about over there?" I didn't have a clue. When Joe said "Wasn't Antelope Island beautiful in that early-morning light?" I was obliged to respond, "I don't know -- was it?" I checked films out from the library, and over and over again I would realize, often well into the movie, that I had seen it in recent months and nothing had stuck. I always felt so "there" in the moment, but it all flew right out of my brain, like a cuckoo out of the nest. It is very painful to have this happen to you. You begin to realize how important memories are to being a "self" and being alive. And you feel that those around you must be saddened to have "lost" you, because this state seems very much like Alzheimer's, but without the changes in personality. I believe -- and there are data that support this -- that taking Omega-3 supplements, as well as the passage of time, finally helped to repair my brain and make it feel kind of sparkly again every once in awhile. Even so, I truly can't imagine being happy.
