Just Say No
Conventional wisdom says psychiatric drugs save lives, but for some San Franciscans the pills are a prescription for disaster
By Amy GoldwitzPublished: May 23, 2007
Brooklynne Michelle has some regrets about having watched The Matrix. She says it's one of the worst movie-viewing choices a bipolar person like herself could ever make.
While riding BART one night, Michelle suddenly noticed that all the ads in the car were exactly the same two unbroken, repeating rows of Tommy Hilfiger pimpage. In the sci-fi film, life as we think we know it is revealed to be a farce a computer-generated program that humans watch subconsciously while robots sap our sleeping brains and bodies for power. In a literal manic state, she decided the ad pattern was no accident. It was a glitch in the program, proof of the existence of the enemy.
"At the point when I thought maybe I should jump in front of the train and kill myself so I could fight against the matrix," Michelle says, "that was when I was like, 'I need to go to the hospital.'"
It was three years ago when she took the 9 bus to San Francisco General, where she told a clerk what was going on in her mind. Her attempt to get admitted is called a 5150, after the "danger to self or others" police code. They put her in a room with a doctor and she had to explain why she wanted to stay overnight. She remembers it being a hard sell, since she hadn't yet done anything self-mutilating."I finally said, 'Look, if I don't get in here, there's a good chance I'll walk out the door and right in front of the bus.'"
A psychiatrist admitted her and prescribed a sleeping pill, which she took. In the morning she felt calmer, and a psychiatric intern signed for her release. As had happened on the couple of other occasions when she 5150-ed herself, the staff gave her a list of referrals to clinics and information about psychiatric medications.
She tossed both in the trash. Instead she called friends to spend time with for support.
The whole episode might not have happened if she'd still been on medication, but that's a risk she'd come to terms with two years before when she stopped taking lithium and moved to San Francisco from her native Michigan.
Mental health is an enormous issue in San Francisco. Last year, the city's Community Behavioral Health Services office saw more than 24,000 people and a significant majority walked away with a prescription. That number doesn't include those in treatment through private insurance.
For many people with severe mental health diagnoses like manic depression or schizophrenia, taking medication is a key aspect of daily life. Michelle's decision to live without it, was and is, a radical one.
But there's a long history around the world of individual and organized resistance to mental health pharmaceuticals. In the U.S. it's always been something of a fringe movement, and remains an object of scorn for many psychiatrists. It's centered primarily in politically liberal regions, and often led by people who have had negative experiences with the mental health system. The infamous involvement of Tom Cruise and other celebrities has familiarized the masses with the Church of Scientology's work in this area, but much of the movement is unaffiliated with the L. Ron Hubbard group. Two prominent points of activism are MindFreedom International in Eugene, Ore., and Freedom Center in Northampton, Mass. Nationally, there has been a scattering of more localized med-free experiments houses, clinics, support groups, community centers, advocacy networks that have had varying degrees of luck surviving.
Support for alternative lifestyles is famous here, but it's still tough to promote the idea that it might be acceptable preferable, even for some severely mentally distressed folks to just say no to drugs. Michelle's trying, so she knows. And she's not the only one.
In a studio at San Francisco's Quake Radio, Alexander Bingham and nutrition coach Jon Sarlin are hosting the Saturday afternoon Organic Psychology Hour. Sarlin talks about the benefits of healthy eating, and then Bingham a licensed clinical psychologist talks about prescription drugs.
Bingham is bright-eyed and his curly dark-blond hair is pulled back into a short ponytail. His torso inclines intently toward the microphone as he vehemently likens psychiatric drugs to pesticides.
"They're very toxic, very dangerous to the body," Bingham says. "If there is a healthier way to achieve emotional balance and growth, wouldn't you want to do that?"
Bingham, 39, is heir to a paper company fortune. He says he's grateful for the "intelligence and rapaciousness" of his progenitors it's given him the freedom to build his own life, even on ideas they might detest. During a severe depression in high school, Bingham discovered the Ram Dass book Be Here Now. Its eastern concept of human interconnectedness appealed to him much more than the rugged-individualistic, hard-work-and-money-equals-success notions he'd been raised with. In college he discovered an affinity for counseling friends in distress, and he took these dual interests and began building a career in psychology.
During his graduate internships here at the California Institute of Integral Studies, Bingham became convinced that psychotropic drugs were doing his patients more harm than good. Voicing this idea, and trying to convince his supervisors to reduce patients' drug loads, got him fired a couple of times. He called Fresno-based psychologist Kevin McCready, who had been running a med-free mental health clinic there since 1990.
"We worked with some incredibly damaged people there," Bingham says. "It helped me see that once you separate out the meds from the distress, only then can you really see what's going on with people. It gave me a really positive perspective on healing and a belief that with the right support, people didn't need the medications."
Once he got his license, Bingham split from McCready's clinic. He respected his mentor, but felt McCready and his staff ignored the link between physical and mental health. Long involved with yoga and meditation, Bingham wanted to open his own clinic in San Francisco, promoting the med-free approach while offering services like nutrition counseling and movement awareness alongside traditional psychotherapy and a day program for the severely distressed.
Dipping into his inheritance, he leased a space at the northeastern tip of the city. Bingham put a lot of personal attention and money into the interior design, wanting it to feel like home for clients. He assembled an advisory board of educators, activists, psychologists and psychiatrists, and a small staff. In January 2005 he opened the doors at Full Spectrum a physical space where his work could finally fully match his ideals.
In the art therapy room, the hint of a frown is discernible on Matthew Morrissey's forehead above his thick-rimmed glasses. Morrissey is a Marriage and Family Therapy intern and director of the adult day program at Full Spectrum. Fresh out of a session, he feels he made a misstep by pushing his client too hard to connect the thoughts she was sharing to some of her past trauma. She got upset, Morrissey says, and she shut down.
Morrissey retrieves a white sheet of paper and a blue marker, and improvises a diagram to explain how he theorizes that his therapeutic approach affects the brain. It's a conception shaped largely by his reading of texts by UCLA psychiatrists Dan Siegel and Allan Schore.
He begins with a circle representing the hippocampus, a region in the lower human brain that plays a key role in memory. Inside the circle, he presses the marker to the sheet several times in a scattered pattern; these dots stand for collections of neurons that house memories. He connects them with various lines to represent a functioning neural system.
Unresolved trauma, Morrissey says, creates a "synaptic enclave" a group of neurons that is disconnected from the rest of the brain's network, which he draws as a series of potential pathways out of the hippocampus. He draws another, smaller circle off to the side to represent the amygdala, the brain's fear center. With repeated strokes of the marker, he makes a bold line between an isolated dot representing an enclave and the amygdala. This direct connection, he says, often occurs when a person with such an enclave experiences something that triggers a traumatic memory. They may become paranoid, delusional, emotionally paralyzed.
By tinkering with the chemicals that create neuronal connections, prescription drugs can help relieve symptoms of mental distress, Morrissey acknowledges. But he believes that by shutting off access to the full intensity of emotional experience, psychiatric drugs prevent a deeper healing. Getting truly better requires revisiting the deepest depths of the wounds that cause the upset. This is the philosophy on which Full Spectrum is based.
Morrissey guides his clients through repeated re-livings of their traumas. By reprocessing those painful experiences in a supportive environment with the help of a trusted therapist, he believes that unencumbered by drugs, the brain can learn to remove trauma from isolation by forming new neuronal connections to more rational centers. The theory is that this helps clients put behavioral coping choices into perspective.
"The problem is that in a lot of cases, the definition of recovery has become limited to, you take your pills and you behave, you get part-time work and maybe live independently. And that's certainly a vast improvement from the state asylums of the past where people were locked away. But our approach is to hold out the possibility that there can be something more profound."
To do this, he says, the therapist-client relationship is key. You can't push someone the way he just did, because it takes time.
"I still am just getting started in this work, and for what we're doing with clients, we're into somewhat uncharted territory," he says. "It's certainly not accepted by the community at large, so there's this sense of not being validated. That really wears on you in a subtle way."
Twelve years ago, while in college in Boston, Morrissey started experiencing "revving" the rapid-fire, uncontrolled succession of thoughts and insights associated with mania. One winter break, it got so bad that he ended up in a locked hospital ward on a 10-day hold, with a diagnosis of unspecified psychosis and a prescription for Risperdal.
After his release, Morrissey says he feared he could be re-institutionalized if he didn't follow doctors' orders, so for three months he continued taking the anti-psychotic as they directed. During that time, he says, he woke every morning with a puddle of drool on his pillow. He says he felt emotionally and physically dulled the effort to decide to walk down a hallway, and then to follow through on that decision, was a tremendous chore.
Morrissey describes himself now as a "psychiatric survivor." This term is used by people who feel stigmatized, abused, and/or failed by conventional mental health systems and solutions, and who pursue alternative recovery strategies. Prior to the psych ward incident, Morrissey hadn't taken psychiatric drugs, and he hasn't taken them since.
"If the drugs work for some people, that's great, that's wonderful," Morrissey says. "But the problem is, the drugs don't work for some people I would say they don't work for most people. And for the people they do work for, they only partially work."
At the clinic, the approach to helping people get off meds is gradual. For clients who decide they are ready, Morrissey and Bingham and their colleagues advise them to stay on meds or get back on them until they feel they don't need them, and they design individual weaning schedules for each person based on various factors the degree of distress, how long they've been on the medication, other physical ailments.
It's fairly well known that going cold turkey off of psych meds is a very bad idea, something Brooklynne Michelle learned the hard way.
Michelle, now 25, doesn't criticize people who use psychiatric medication; she just knows that it's not for her. Her mother once told her she'd read that unmedicated manic episodes could damage her brain. But Michelle is convinced that if she were still on meds, she would not be living and working independently. "So if my tradeoff for that is not living as long as other people, I'm willing to take that risk," she says.
Not long before age 10, Michelle started having severe sleeping problems. For weeks, she'd stay up all night, and then she'd crash and do almost nothing but sleep for days. When she did see a therapist, he diagnosed her with juvenile bipolar in about 20 minutes.
A few years later, a different therapist told Michelle's parents that their child would be bipolar for the rest of her life. He told Michelle directly that she should get used to life as a dependent, because she was never going to be able to live alone, and there was a good chance she would kill herself before age 25. At 15, doctors started prescribing her anti-depressants, which exacerbated her sleep problems. The therapists eventually realized that her case of bipolar was more pronounced on the manic side, and at 18 a doctor put her on lithium and the anti-psychotic Zyprexa. The latter helped her sleep, but two weeks into taking it she woke one morning to the sight of an alligator sitting at her desk, wearing Victorian garb and drinking tea. She started throwing things at the vision and it disappeared, but she called the doctor and got off the Zyprexa. She continued taking lithium for about a year.
"I lost a lot of friends that year because they couldn't handle being around me, because I was no longer me," she says. "I was speaking robot, I had no inflection in my voice, everything was flat. I wasn't happy. I wasn't sad."
Michelle started cutting herself, trying to feel something. It hurt, but there was none of the emotional pain she expected. The big moment came at 19. For two years, she'd been living with and caring for her ailing great-grandfather, and he passed away. At his funeral, she found she couldn't cry. When she got home that day, she flushed all her lithium down the toilet and started planning a move to San Francisco with the $10,000 she'd just inherited.
The emotions started trickling out of her for a few days, and then the dam broke. When there were no more tears, everything shut down. In a move Michelle says she is still thankful for, her mother checked her into an institution. The doctors put her back on medication and respected her decision to wean off. They helped her reduce her dose over a month, for an easier transition than the abrupt approach she'd tried. They wanted her to stay longer, but she was determined to make the flight she'd booked. She checked herself out while on a very low dose of lithium.
"I was at a point where I was at a limit, I didn't care whether I came out here and committed suicide," Michelle says. "I decided that my last pill I was going to take was on the plane. So I took that pill, and I haven't had medication since."
The reasons people avoid psychiatric medications are diverse. Many dislike the common mood-blunting side effects Morrissey and Michelle experienced, which can also include sleepiness and lack of sex drive or inability to experience sexual pleasure. Newer anti-psychotics seem to cause the shakes (tardive dyskinesia) less often than older incarnations, but as reported recently, Zyprexa appears to cause increased incidence of obesity and high blood sugar risk factors for diabetes. In the spirit of R.D. Laing, some mental "patients" are oriented against psychiatry in general, seeing their conditions not as illnesses but as alternative ways of experiencing the world. Some, like Bingham, believe the science regarding neurochemical imbalances as the cause of mental distress is unproven, and they oppose the dominance of pharmaceutical companies that manufacture and market psychiatric medications based on a purely biological view of the brain.
Cases of violence involving unmedicated people with psychotic diagnoses get a lot of media attention. In 2003, Elli Perkins of Buffalo was murdered by her son, who doctors later deemed schizophrenic. Perkins and her husband were Scientologists, opposed to psychiatric drugs and psychiatry in general. Last September, Virginia psychiatrist Wayne Fenton was killed by a young patient who was off medication after being diagnosed bipolar.
Dr. Josh Israel is very concerned on a daily basis about the possibility of these kinds of incidents. His office at the San Francisco VA Medical Center is adjacent to the locked psychiatric intensive care unit he directs. Veterans come in hallucinating or paranoid; they may have just assaulted a police officer, or been found wandering naked at the airport. He tries to get them on or back on medication. Usually they agree; sometimes it takes a court order. Electro-convulsive therapy is a voluntary treatment he offers the more severe sufferers, and many try it.
There are a lot of thick psychiatry books on his office shelves, and Israel wistfully gestures toward them when acknowledging how little we still know about how the brain works. "Looking at those, you'd think we'd know a lot more than we really do," he says. How psychosis affects the brain long-term, and even how treatments like medication, ECT, therapy, or alternative medicine ultimately alter brain structure for better or worse these realms are still quite mysterious. The short-term is easier to understand, Israel says.
Dr. Israel has seen people who've done destructive things to themselves. "They've cut off digits, or testicles. There are people who have literally burned down their own homes. Things like that are not the inevitable result of not taking psychiatric medications, but no one well, maybe not no one, but I would say it would be extremely rare to do those kinds of things on medication."
UCSF psychiatrist Sophia Vinogradov also works at the VA campus. She sees severely disturbed individuals unable to get help from other doctors. About 85 percent of her patients use prescribed medication in combination with behavioral therapy.
"With a very severe psychiatric illness, it's like having a cancer in your brain," Vinogradov says. "So sometimes you have to think about the medications a little bit like chemotherapy. They're crappy to take, but at least they're going to stop things from getting worse."
To those who study and work with the brain in mainstream psychiatry, it's not that Morrissey's diagram is far-fetched or nonsensical. It's just that more of the conventionally accepted science shows that meds are a better bet for alleviating psychosis than therapies alone.
Psychiatric drugs contain molecules that fix onto specific receptors in the brain and either block or enhance the actions of certain brain chemicals, thereby modifying how affected neuronal pathways work. For many, this reduces symptoms like hallucination and delusion. Vinogradov says non-medication-based approaches psychotherapy, exercise, spending time with friends and family, meditation, learning new skills can all alter brain pathways as well. But far less is known about how this occurs, she says, other than that it is somehow related to the brain's plasticity its ability to constantly remodel itself as it collects new information and experience.
Vinogradov notes that psychiatrists who work on an insurance reimbursement basis often only get paid for 15 minutes with a patient, and must relieve their symptoms in the span of something like 12 such appointments or risk not getting paid for additional visits. She says this incentivizes treatment by quick-fix prescription rather than costly psychotherapy or other alternative approaches.
She has her own questions about the long-term viability of psychiatric medications, especially as a stand-alone treatment, and is researching behavioral methods for alleviating symptoms of schizophrenia. But with a lack of sufficient resources for mental health, Vinogradov says medications are still a very important part of treatment.
Israel puts a finer point on it; he believes medication is an absolute necessity for anyone diagnosed bipolar or schizophrenic, as there is no scientific evidence that self-care or therapy alone, or in combination with other alternative approaches, helps people with those diagnoses reduce their risk for potentially dangerous psychotic episodes.
He says encouraging them to think they can and should manage med-free goes against his profession's idea of informed consent patients or clients having a full understanding of the choices they're making. "Nobody should be encouraging them to think they're in treatment, because they're not," Israel says. "They're getting a placebo."
To Bingham, it's the anti-psychotics that are the placebos more expensive and dangerous crutches than pot or alcohol. He's spent years combing through psychiatric journals, becoming ever more convinced that the science behind the clinical studies is too biased and flawed to justify widespread use of anti-psychotics.
Bingham's used to hearing people say they couldn't live without their drugs, or that they have a relative whose life has been saved by them. Blunt by nature, he's changed how he converses with those people.
"I used to say, "Well, you can believe what you want, but I can just tell you that in my experience, with the right therapy and support, the drugs are unnecessary. They're only necessary if you'd like to cut yourself off from whatever feelings and emotions got you to the point of overwhelm where someone thought you needed the medication,'" Bingham says.
These days he says it how he did on the radio: If there were a better way, wouldn't you want to give it a try?
Full Spectrum has worked with about 200 people in the last couple of years, Bingham says. He doesn't compile stats, and doesn't track how people fare after they leave. Beyond the several who've given up the meds they were on, many others came in off meds but on the verge of taking them. Some decided to stay off, while others chose to go on them.
"The important thing is they were exposed to an alternative approach," he says. "Whether they're on or off meds is less important than being more consciously on or off them."
One young woman, now 20, came in with a schizophrenia diagnosis and a regimen of three anti-psychotic and sedating medications, twice daily. She spoke in various voices and couldn't converse with others. At Full Spectrum, she improved so much that her psychiatrist removed the diagnosis and worked with Bingham to help her off most of her medications. She's down to one pill once a day.
Dr. Robin Cooper is the woman's psychiatrist; she works at the Adult Care Management Program for the Family Service Agency of San Francisco. Cooper, who has been a clinician in San Francisco for 24 years, didn't initially know of Bingham's bias against medication. When he first brought up the idea of helping her wean off, Cooper was hesitant; she'd had a negative experience helping a bipolar patient of her own do the same thing. But in this young woman's case, Cooper came to believe she had been misdiagnosed that her problems were due to developmental delays, and that previous psychiatrists had prescribed medications as superficial behavioral controls.
Cooper is of two minds about Full Spectrum. She thinks the quality of the psychotherapy and other services it has offered is extraordinary, but disagrees with Bingham's wholesale opposition to pharmaceuticals. She's therefore careful about referring clients, but still inclined to do so especially given the city's bleak landscape of mental health services.
"A lot of what used to be day programs have been renamed as "re-socialization programs,' which means they're really just drop-ins," Cooper says. "It's horrendous, there's just no investment anymore in really cohesive programs, it's just been cut and cut over the decades. You really can't find a decent day treatment program anywhere anymore."
Full Spectrum is now on the list of casualties. Bingham spent $1.3 million, a quarter of his inheritance, building the clinic. His plan was to use his money just to get it going, and then sustain it with a combination of clients who could pay out-of-pocket and grants to subsidize meager insurance reimbursements for those who couldn't. It didn't work on either side. In January, the day program and supplementary services shut down. Bingham and Morrissey continue to see some clients for individual therapy. Cooper is looking for an alternative day program for her young client.
"The system makes it hard for all mental health practitioners and clinics to survive," Bingham says. "If you add in our perspective on top of that, it just makes it that much harder."
Bingham is sad and frustrated, but says he's not completely discouraged. He's been talking to administrators of the state's Mental Health Services Act, the 2004 voter-approved program that taxes top earners to pay for improvements to county mental health services; he wants them to support alternative treatment approaches like his. He's continuing with his radio show, and thinking about how to rebuild Full Spectrum.
Tonight it's stuffed chicken breast with portobello mushrooms, and a white wine sauce that takes an hour to prepare. Michelle says crafting complex meals slows her down and helps her focus. Lately she's been feeling on the verge of a manic phase, so she's taking steps to keep it in check. She gets manic twice a year, on average, and the phases last from three weeks to three months. When you're on an energy kick and feeling like you don't need to sleep, you can read all the books you want, knit all the socks, paint a new picture. But the higher that high of intense productivity, the harder the inevitable crash.
Michelle's gotten much better at taking the edge off these spells. She generally sticks to a low-sugar, low-carb, high-protein, high-vegetable diet, which controls the severity of her moods quite well. She meditates regularly, and takes warm, scented baths at least twice a week. Depressive phases normally follow her mania, but if she can control how high she gets, the resulting lows become easier to bear.
"I once heard a therapist describe bipolar as your brain attacking itself," she says. "I just try to be like, "You know what? My brain has a different way of processing things, and I'm just going to have to find my own ways to work with it.'"
Last year Michelle found a zine called Navigating the Space Between Brilliance and Madness; A Reader and Roadmap of Bipolar Worlds. It was compiled by Sascha Altman DuBrul and Ashley McNamara, the founders of a support network for bipolar people in San Francisco and beyond.
Michelle picked it up and read it immediately, straight through.
"I said, 'This is an organization that I feel an affinity with,'" she remembers. "I can't be the only one who doesn't want to take medication. I can't be the only one who wants to educate the community and the world, so that when I say I'm bipolar, people don't think I'm a complete nutcase."
It's called the Icarus Project, alluding to the tendency of many bipolar people to fly too close to the proverbial sun. DuBrul and McNamara moved to New York two years ago, and from there they've helped groups across the country start local chapters. It's a diverse community. Some people take meds and others don't, many just participate in the online forums, and others come out to support groups or events.
After finishing the reader, Michelle wrote out her life story, sent it to Icarus via e-mail, and asked if they needed help. They did, and suddenly she was the new local director.
The Matrix incident on BART three years ago was the last time Michelle 5150-ed herself. Last September when she turned 25, she threw herself a "woo-hoo!" party to celebrate the milestone her former therapist said she'd likely never reach. She works part-time at an ice cream parlor, doing creative work on the side. Her Icarus work is her charity, she says her way of giving people the hope she's found for herself.
"I would love it if I found out that somebody heard my story and decided to go off meds and their life was better because of it," Michelle says. "But I'm not out to get everybody to stop medications."
Michelle cautions that those under 18 have to obey their parents and doctors. She advises adults that the only good reason to get off meds is if the pills make life harder rather than easier. Like Bingham, she urges people who do choose to go off meds to wean slowly, to have loved ones or professionals watching the transition, and to not rule out getting back on meds if things go downhill.
Michelle's greatest hope is for mental disabilities to become more socially acceptable. She says that could ease the intense feelings of self-loathing that people like her struggle with, perhaps reducing their tendency to commit violent acts against themselves or others.
The $6 donations were optional on March 9 at El Rio, the hip Mission Street club. It was a benefit for the re-emerging San Francisco Icarus Project.
Michelle hadn't slept the night before. She'd been working since 7 a.m., and the only thing she'd eaten all day was a king-size Snickers. She dashed around, setting up a literature table, talking logistics with the doorman, consulting with co-organizer Eddy Falconer about how best to introduce his film, which was about to screen in the packed back room.
"This is one of those days I'm glad I'm manic, otherwise I don't know how I'd have gotten through it," she said mid-scurry, laughing.
On stage behind the microphone, she struggled to keep up with her own thoughts. ("Welcome to the movie screening of Ibéria, an Eddy by ... I mean a movie by Eddy, not an Eddy by movie!") She shared her personal story, and rattled off a list of things Icarus hopes to do soon a bipolar art show, speaker panels, workshops about medication reduction and holistic living. Someone in the audience shouted, "Don't say you want to do it, say you're going to do it!" Not missing a beat, Michelle replied to the cheering crowd, "We're going to do it, we are!" The benefit raised $500.
The hour-long movie began and Michelle finally settled in. She'd been looking forward to seeing this for a long time. It's an experimental pastiche that Falconer assembled over years of his own struggle with bipolar, intermittently on and off a litany of medications. It's a collection of scenes, some serious and some farcical, many of which seem tenuously, if at all, connected to the central thread about a delusional emperor. To the non-bipolar mind, it's entertaining but makes little conventional sense. When it ended, the lights went up to more cheers.
"That movie made me feel sane," Michelle whispered.