In 1980, the year Ashley McNamara was born, the Freudian era of psychiatry officially ended with the third revision of the Diagnostic and Statistical Manual of Mental Disorders. With the dissemination of a new psychiatric bible, hundreds of supposedly biological psych disorders were given a name for the first time. Lost a parent and sad? Adjustment Disorder with Depressed Mood, 309.0. Occasionally melancholy about losing a loved one at an early age? Separation Anxiety Disorder, 309.21. Vacillating between moments of exhilarating joy and excruciating sadness, sometimes threatening your own life? Bipolar Disorder I, Most Recent Episode Mixed, Severe with Psychotic Features, 296.64. Once the ailments had names, Big Pharma was there to freely dispense the medicine.
The biomedical era first entered McNamara’s life almost two decades later, when she was nineteen. Attending college in Rhode Island, she describes her behavior then as “intermittently brilliant and completely self-destructive, snorting coke off my roommate’s bed table when she was away for the weekend and then blowing people’s minds in graduate level seminars on postmodern theory.” After a month of mania, she crashed into two months of completely incapacitating despair. When her then-girlfriend couldn’t take care of her anymore, she checked McNamara into a hospital. Later that month, she was hospitalized for a second time, and after a night spent cutting her arms and swinging from the curtain rods of the psych ward, she was diagnosed as bipolar. She was prescribed a number of psychopharmacological medications, including lithium, a powerful drug given to manic-depressives to stabilize their moods.
As these drugs helped McNamara regain her ability to read and think, she learned more about her diagnosis. Paradoxically, she became convinced it was bunk. As she later wrote in an essay called “Anatomy of Flight,” “doctors were trained to dissect people’s lives into terms, classes, rules, cases, neurotransmitters, algorithms, atypical antipsychotics, treatment-resistance, noncompliance … which seemed like a ridiculous approach to understanding a human being.”
Not just dissatisfied with the ramifications of her psychiatric diagnosis, she also was feeling a bit numb. So after a year of working with horses and living in a one-room cottage in rural New Jersey, she fled her quiet life, taking off for Greece. From there, she eventually moved to the Bay Area, where she tried to deal on her own with “the fragile fire in her brain” by no longer taking the little pink pills. She went cold turkey.
In September of 2002, McNamara happened across a copy of the San Francisco Bay Guardian that contained a personal account of manic depression by Sascha Altman DuBrul. Up to that point, she had never encountered anyone whose condition resembled her own. “I read his article, and resonated with it so much that I ended up sending him my entire life story,” she recalls. The pair corresponded for seven weeks, and when they finally met, the chemistry was enough to change both their lives.
“We ended up talking till four in the morning,” she says, “and we woke up the next day and started the Icarus Project.”
Named for the mythological figure who flew too close to the sun on wings of wax, the Icarus Project grew out of the dramatic response to DuBrul’s chronicle of dizzying heights and shattering lows. He’d gotten letters from many kindred spirits besides McNamara — enough that he and she decided that what the bipolar community really needed was to actually be a community, one that cares for itself.
McNamara was the perfect partner for DuBrul in this endeavor. Not only was she bipolar, but she was off her meds. Had she been medicated, she says, “It would not have seemed reasonable to me to jump into creating a project with a complete stranger, who I met through the newspaper, and devote my entire life to it for a month straight. Or even doable. It’s a lot easier to do things like teach yourself HTML sixteen hours a day if you aren’t really sleeping.”
For almost three years since then, the project’s Web site has grown beyond its initial community of young liberals to provide a meeting place, information station, and writing and arts forum for all sorts of people with bipolar disorder. Last spring, the project put out a book, Navigating the Space Between Brilliance and Madness: A Reader and Roadmap of Bipolar Worlds, which is now in its fourth printing. Its sales, coupled with grants and donations, allow McNamara to work full-time at the Icarus Project.
But one of the most moving pieces on the site isn’t included in the book — it’s another essay by McNamara detailing her experience quitting medications with the help of strict diet regulation, meditation, and other forms of purposeful self-care. It’s a tremendously powerful manifesto, a testament to the idea of using everyday means to beat the demons that had been beating her for so long. It includes the following passage:
“This is not a quick fix and it requires more investment than popping pills. But I don’t rely on the Man. I don’t have to worry that if I lose my health insurance, I’ll lose my medicine and go nuts. I can have babies and not worry that they’ll have crooked spines. And I am honestly healthier, more consistently happy, and creating more beautiful art and pieces of writing than I ever could before.”
But the essay also included a postscript. Shortly after writing it, McNamara went back on her meds.
MAYBE THERE’S SOMETHING IN THE WATER
Here in the East Bay, where so many revolutions find a footing, a whole spectrum of people such as McNamara and DuBrul find themselves somewhere between the pill-pushing psychiatrists of the modern Western medical establishment, and the ideology of those who believe there is no such thing as a psych disorder. Many of the movement’s reluctant members are distrustful of both camps, and focused on making their own way in a world more likely to mistrust them.
McNamara, 25, whose bare feet, makeup-free face, and tousled brown hair resemble a natural-look version of Ally Sheedy in The Breakfast Club, felt devastated when she failed in her first steps toward self-sufficiency. “I was building a lot of my identity around being a person who had learned how to take care of herself, and I was really excited about not being on the medications,” she says. “So being back on them was an extremely difficult thing to decide to do. … You want to talk about something that blunts your senses; antipsychotic medications blunt you intensely.” But then again, “sometimes when you’re hearing voices telling you to kill yourself at four o’clock every day, being blunted is not such a bad thing.”
McNamara had been three weeks away from getting her art degree from the San Francisco Art Institute. She is confident that most any shrink would have put her back on medication six months before she finally sought them out herself. “But I made the most amazing art I’ve ever made in my entire life,” she says. The work that hangs around her studio in the project’s offices attests to this. The last oil painting she completed while off her meds is a rich mix of a highly realistic landscape and abstract elements. She also worked on some detailed smaller pieces during that period. Further illustrating the point are the oils she has been painting since back on lithium and Lamictal — all unfinished. But McNamara cautions not to make too much of the wild, powerful creativity so often romanticized in manic-depressives. Although TheIcarusProject.net features a “Dangerous Gifts” section, which features art and writing by project members on the links between creativity and madness, the site’s real gift is that of the community it creates.
A growing body of research and experience suggests that community may be more important than other forms of treatment. In 1967, the World Health Organization launched the International Pilot Study on Schizophrenia, initially to find out if the disease existed internationally. Thirty-five years of study eventually showed that people diagnosed with schizophrenia fare remarkably better in poorer nations: There were fewer overnight hospital stays and higher employment rates in Nigeria, Chile, and India than in the United States, Germany, and the Netherlands. Even more shocking was the finding that between one half and two-thirds of people in developing nations recovered fully from the disorder. No delusions, no catatonic states or hallucinations, no disorganized speech, nothing.
“When a new psych drug comes out, and it’s like a few percentage points better than placebo, it makes big news, right?” asks David Oaks, cofounder of MindFreedom: United Action for Human Rights in Mental Health, an independent mental health organization. “But there’s something in poor and developing countries that they’re doing that’s twice as good.”
Oaks, like many who have read the World Health Organization study, points to the closer community and family ties in these developing nations, and “greater tolerance of unusual thoughts and beliefs, seen often through a spiritual lens.” For instance, many schizophrenics in India are able to work low-paying jobs, therefore remaining a part of the economy — as opposed to in wealthier nations, where they’re unlikely to be employed, and may be on disability, or homeless. In poorer countries, schizophrenics’ families sit in on doctor-patient conferences, participating directly in their care.
As a working-class kid putting himself through Harvard in the mid-1970s, Oaks himself ran into emotional problems and was diagnosed as a schizophrenic. By the time he graduated, he’d been locked up in the psych ward five times. Today he compares the experience to a vision quest, which led him to write his senior paper on human-rights work, and eventually work in the field as a founder of one of the world’s most established independent mental health organizations.
MindFreedom grew directly out of the psychiatric survivors’ movement of the 1970s, much of which began in the Bay Area with the Network Against Psychiatric Assault and the Madness Network News. Although MindFreedom is now based in Eugene, Oregon, it recently opened offices in San Francisco, and brought several seminars to the area during July, which is known as Mad Pride Month.
One such talk was by Dr. Daniel Dorman, an assistant clinical professor of psychiatry at the UCLA School of Medicine. Dorman was joined by his formerly schizophrenic patient, Catherine Penney, now a psychiatric nurse and semiprofessional flamenco dancer. When the two met in the 1970s, he was in his first year of psychiatric training, and she was nineteen, institutionalized, and catatonic. For two years, Penney kept her eyes almost completely closed at all times, and shut herself down so completely that she would sit drooling in the hospital day room, her saliva dangling from the hem of her gown into a puddle on the floor. Diagnosed as schizophrenic, when Dorman began treating her she had been on the antipsychotics Thorazine and Stelazine for nearly a year — plus the antidyskinetic Cogentin to control the tremors and muscle stiffness caused by the first two.
He saw Penney as suffering from a halt in her psychological development, not from a brain illness, and he worked on getting through to her personally, without drugs. “He always appealed to the well part,” she says. “I never got the feeling that I was crazy or insane or hopeless. And he always listened; even when I was delusional about things, he could always get underneath the delusions to grasp at the kernel of truth that is always there in a delusion.”
The Beverly Hills-based doctor, while not exactly hostile to medication, has taken a decidedly individualized, humanitarian approach in his career. “I’m sorry that psychiatry has abandoned so much of its former concern for the human soul and the insides of the human being in favor of a mechanistic, medical model approach,” he says. “In psychiatry, we don’t have to take responsibility. If our kids are out of control, we label them ADD. If I’m upset, then I label it clinical depression. If a person beats up his wife, he suffers from anxiety disorder. If a man is too shy to go out with women, we call it erectile dysfunction.”
And if a man speaks out against psychiatry, we call him a Scientologist.
GET THEE BEHIND ME, THETAN!
“Here is a woman, and I care about Brooke Shields because I think she is an incredibly talented woman. You look at, where has her career gone? … These drugs are dangerous. I have actually helped people come off. When you talk about postpartum, you can take people today, women, and what you do is you use vitamins. There is a hormonal thing that is going on, scientifically, you can prove that. But when you talk about emotional, chemical imbalances in people, there is no science behind that. You can use vitamins to help a woman through those things.” — Tom Cruise
When Tom Cruise made a late-May appearance on NBC’s Access Hollywood, he talked about his new movie, and his high-profile love affair with Katie Holmes. But what garnered most attention were his comments on psychiatric medications and actress Brooke Shields — who wrote about using therapy and the antidepressant Paxil to fight postpartum depression in her memoir, Down Came the Rain. Shortly after Cruise defended his comments in a subsequent appearance on Today, the American Psychiatric Association issued a statement of its own. “It is irresponsible for Mr. Cruise to use his movie publicity tour to promote his own ideological views and deter people with mental illness from getting the care they need,” association President Dr. Steven S. Sharfstein said. In other words: “Tom, you’re an actor, not a doctor; stay out of it.”
According to the American Psychiatric Association, antidepressants and other psychopharmacological medications “can be an important and even life-saving part of a comprehensive and individualized treatment plan.” Prozac, Xanax, Effexor, Depakote, and the various brands of lithium carbonate, they say, are a safe, efficient way to improve the quality of millions of American lives. Surely only religious fanaticism would make someone question the validity of psychiatry and the medications that have changed so many lives, Cruise’s critics postulated.
“Scientology has always been antipsychiatric services,” says Vivian Jackson, copresident of the East Bay chapter of the National Alliance for the Mentally Ill, a national nonprofit founded by the families and loved ones of mentally ill people. And indeed, a publication called Pseudoscience: Psychiatry’s False Diagnoses, available from the Citizens Commission on Human Rights, Scientology’s psychiatric watchdog group, makes the following points.
1. Psychiatric “disorders” are not medical diseases.
2. Psychiatrists deal exclusively with mental “disorders,” not proven diseases.
3. Psychiatry has never established the cause of any “mental disorders.”
4. The theory that mental disorders derive from a “chemical imbalance” in the brain is unproven.
5. The brain is not the real cause of life’s problems.
Most of these are as oversimplified as the commercials that say Zoloft will turn you from a frowny little doodle into a bouncy, happy one. Some mentally ill brains do look different. Some psychiatrists deal with the whole person, not just what the Diagnostic and Statistical Manual says is wrong with them. And if the brain isn’t the cause of life’s problems, then what is?
Given Scientology’s vaguely disreputable image among the general public — possibly due to a creation myth involving volcanoes, movie theaters, nuclear weapons, intergalactic baddies, and clusters of confused souls called thetans — many in the radical mental health movement wish to maintain a reasonable distance from the church. But many agree with its criticisms nonetheless. Speaking out against the dominant biomedical paradigm and the big business of pharmaceuticals takes courage, they say.
As the leader of an organization that often finds itself on the same side of the fence as the Citizens Commission on Human Rights, David Oaks has been labeled a Scientologist more times than he cares to count. Oaks compares this to the labeling of communists in the McCarthy era, and finds it quite troubling. It’s insulting, he says, “that we who went through the mental health system are incapable of organizing ourselves, and that if somebody has a criticism of the mental health system, they must be under the control of a mind-control cult.”
“There’s always a group of people who feel that [medication is] not the way that they want to be treated, and they have a right in this country to choose their treatment,” says San Francisco psychiatrist Dr. Larry Lurie. “It doesn’t matter whether it’s cancer treatment or psychiatric treatment, they can say yes or no, this is what I want to do for myself. And I think it’s a wonderful thing that they have that right to make choices.”
That said, Lurie thinks the treatments used in psychiatry are effective and scientifically proven, citing the effectiveness of mood stabilizers to level out dispositions, antipsychotic medicines to counter hallucinations, and shock treatment to help older people in particular out of severe depression.
But the treatments Lurie refers to are dictated by the Diagnostic and Statistical Manual, a book whose radical revision may be imminent. The fourth version of the book claims that 374 separate mental disturbances actually begin in the brain. But many psychiatrists, authors, and academics quarrel with that claim.
By Dorman’s calculations, fewer than twenty disturbances actually have biological causes. Symptoms of injury or disease should be supported by objective evidence, he says: “There’s virtually no objectivity but for a small subgroup of disorders listed in the Diagnostic and Statistical Manual.”
He lists thirteen of the categories in the manual: degenerative changes in the central nervous system (includes Alzheimer’s and senile dementia, among others); vascular disorders (includes stroke and others); metabolic disorders (includes diabetes, renal diseases, electrolyte disorders, and others); space-occupying lesions (includes tumors and others); head trauma; mental retardation; epilepsy; infections; intoxication (includes alcohol, lead, and others); hydrocephalus; heat stroke; blood disorders; miscellaneous organic disorders (includes sarcoidosis, multiple sclerosis, and others).
“Even these disorders have emotional components that are difficult to sort out from purely organic factors,” Dorman says. “For example, if someone had multiple sclerosis, she’d have lesions in the brain and also have every reason to be depressed. Which is which? Not possible to say for sure.”
Dorman says 50 percent of the world’s population meets the criteria of one of the manual’s diagnoses. “What, then, are the psychiatrists saying?” the psychiatrist asks. “They’re saying that fifty percent of the population is abnormal. Is that possible?”
Dorman argues with the Western psychiatric establishment’s notions about cause and effect. “If someone’s father or mother dies, that person gets depressed, you do a PET scan of his brain or studies and you’ll find out that, yep, it looks similar to other people who are depressed,” he says. “The other people in psychiatry say, ‘Oh, no, it’s just his brain that’s broken.'” Psychiatry argues that these brain abnormalities cause mental disorders, but Dorman thinks that’s backward. “That’s a silly argument, since everybody knows that deaths and loss cause people to be unhappy. Just to say that people who are sad have broken brains is kind of silly.”
Lurie is more willing to defend the status quo, though he acknowledges that it has drawbacks. “The [manual] is the current amount of scientific experience we have,” he says. “There is also clinical experience, which isn’t quite so scientific, but it’s what we have. And it evolves. They’re writing a new [manual] that’s going to be different than the last one. Their committee’s getting together and discussing the same issues, saying ‘This isn’t validated, maybe we should think about it a different way.’ Or ‘There’s new scientific information that we didn’t have ten, fifteen years ago when we developed the previous one.'”
The symptoms that led to Crystal Haviland’s diagnosis could be construed as understandable reactions to personal trauma. Physically and emotionally abused from the age of four, she says, she started hurting herself at age six or seven, slamming her head against the wall right around the same time she was first sexually abused. She began experiencing “pretty extreme depression” when she was eleven, and soon became anorexic. As her depression dovetailed with an adolescent surge of hormones, she graduated to more sophisticated methods of self-harming. Early in her fifteenth year, she became suicidal and was hospitalized, largely against the wishes of her mother and stepfather. She said they had “the kind of attitude that some parents have where they just think you want attention. And I was like, ‘No, I really wanna kill myself. ‘”
Haviland, now 26, was admitted to an institution and placed on suicide watch. “Every ten minutes they’d shine a flashlight in my face, even when I was trying to sleep,” she remembers. Because she had copped to drinking and smoking pot, she was put into an adult drug program and forced to attend Narcotics Anonymous meetings. Her roommate in the institution, who was suffering from an eating disorder, would often ask Haviland to stand guard while she did sit-ups in an effort to work off more weight. The whole thing was just … depressing.
“None of it was really helpful as far as getting any true care or treatment,” Haviland says. She got good marks on her chart, though, and was released after two weeks. After a short-lived spell of calm at home, she moved out just before turning sixteen, focusing her energies on graduation and survival.
Haviland’s official diagnosis is bipolar II. Psychiatric professionals usually prescribe her antidepressants and, for the anxiety attacks triggered by her extensive history of trauma, antianxiety medications. In her short life, she has taken the antidepressants Prozac and Celexa; the anticonvulsant Depakote; the antianxiety med Ativan, and, of course, the mood stabilizer lithium carbonate; not to mention the self-medicating that has been a factor in her life since she was twelve, most dangerously with speed for a few years after first moving to California. Now, though, Haviland is clean and sober — no lithium, no booze, no antidepressants. She says it was a pretty easy decision to make, given that she is pregnant.
“It’s been very interesting,” she says with a laugh. For one thing, she isn’t used to eating so healthily and so regularly. But now she is feeding her body good stuff at regular intervals, and experimenting with the effects of Chinese herbs and natural compounds such as amino acids and Omega-3 polyunsaturated fatty acids. She’s starting to suspect that her psychological problems may have something to do with thyroid dysfunction, but she’s not averse to the idea of getting back on certain medications if absolutely necessary. She wants to do what’s best for herself and her child, and so she educates herself constantly.
What Haviland has found most helpful are the various communities providing her with support. The slender, generously tattooed activist lives in a collectively owned house in Berkeley with five housemates, one of whom is her partner. She is part of the Nabolom Bakery collective. She is in therapy. And she is a member of the Bay Area Radical Mental Health Collective.
Like the Icarus Project and MindFreedom, the Bay Area Radical Mental Health Collective is largely made up of people who have been diagnosed with psychiatric disorders. Unlike the other two, though, the collective is new — three months old or so. Its membership includes about a dozen people; diagnoses represented include depression, anxiety, schizophrenia, bipolar disorder, and post-traumatic stress disorder. Some are studying or have studied psychology; others are from the antipsychiatry movement. Some are on meds; some are not.
For her part, Haviland brings to the new collective not just her experience as a patient, but her experience as the creator of the radical mental health zine Distress and as a harm-reduction worker with the Needle Exchange Emergency Distribution program in Berkeley. She is studying psychology at Vista College, and she shares a desire with other members of the collective to build a support network and peer-counseling center, hopefully with money from Proposition 63, the 2004 mental health services act that levied a new tax on high-income individuals and funneled it into California’s county mental health systems. Thus far, their main activity is cosponsoring a weekly class in “radical mental health.”
“I’ve been involved in tons and tons of activist stuff, and I’ve always come to a point where I feel overwhelmed, and have activist burnout, feeling really down on myself when I couldn’t function at the level that other people are functioning,” she explains. “And the group has really been an amazing experience as far as being supportive for each other and open to each other needing to do what we need to do.”
In short, just the survival of a radical mental health collective is a fairly big accomplishment in Haviland’s eyes.
WHY DON’T YOU SMILE MORE?
Dealing with mental illness is one thing; becoming an activist is quite another, and it’s not for everyone. With limited support networks, most people keep their psychiatric struggles to themselves. “And once people get through such a crisis, or at least learn to cope, they usually don’t want to do anything that opens up the old wounds,” says a member of the collective who calls herself Dr. Ruthless. “Very few people I met in ‘recovery’ are activists today.”
Sharnée Nichols is not a member of any activist group, but she is unconsciously part of the broader movement. She came to it almost by accident. In 2001, despite having a decent job in a law office and a life history in the Denver area, the then-22-year-old decided to move to Alameda, moving in with her recently relocated father and stepmother on a whim that quickly set her on the high road to recovery.
After eleven years of sadness, a man she dated pointed out that maybe, just maybe, she could be happier. “His big thing was, ‘I wish I could get you to smile more. I wish you smiled more,'” she recalls. “I was like, ‘I don’t really know why I don’t smile more. But I don’t. And that’s just kind of how it is.’ And he was like, ‘Well, no, it doesn’t have to be that way.’ And I thought, ‘It doesn’t? What’s that all about?'” And though she wondered if it was just her new boyfriend not appreciating her for who she was, she did start to think back to a time when she did smile more — and the time she arrived at was before her parents split up.
Through Kaiser, Nichols had five sessions with a counselor. When it was clear that this wasn’t enough, she got referrals to therapists, one of which led her to the Psychotherapy Institute of Berkeley, which offers sessions with graduate students still logging student hours and fees on a sliding scale. Nichols found her therapist helpful, coupled especially with the help of a trusted family doctor. With her therapist, Nichols explored her adolescence, including her eating disorder — “all bingeing, no purging” — and a compulsion to please everyone but herself that inspired this captain of the spirit squad to hang with the stoners and skaters, and squander the opportunities her performing-arts high school offered her. They talked about why her parents’ marriage failed, and how to set the bar higher for herself. And they arrived finally at the exact moment when the wall went up, shielding her from feeling highs and lows for the next decade:
She and her little brother were watching Hey, Dude! on Nickelodeon, she says. They would find out later that their mother had locked herself in the bathroom shortly before, threatening suicide. “Dad comes down the stairs behind us and says, ‘Hey, you guys, we need to talk,'” Nichols recalls. “We turn around without turning the TV off and, in roughly sixty seconds, he explains what our worst fears would confirm. And we kind of listen and nod, and he’s done, and we turn back around and look at the TV. My brother starts crying, and I put my arm around him and scoot him close to me. And that was it — just, ‘Something’s not right and there’s nobody else here, and now I’ve got to take care of things.’ And that was it. Rock wall. And it stayed there.” Three years later, Nichols’ mother offered her the chance to talk to a therapist, but the teenager shrugged it off for fear of what her friends would think.
Nichols’ clinical depression isn’t as severe as being bipolar or schizophrenic. But talk therapy worked for her — and medication did not. After two years of psychotherapy, she felt that she’d hit a plateau. Both her therapist and her physician suggested medication, which Nichols had been expecting for a while. But after a year of experimenting with various levels of the antidepressant Effexor, she said no thanks.
“I think I walked into it expecting it to make a difference,” she recalls. “And when it just numbed everything instead of helping me see things in a different light, that’s when we tried different doses. But it was already set in my mind that this is what this drug does. It’s not going to do what I need.” Nichols went back on an all-therapy regimen, and, after another year, walked out of her therapist’s office for perhaps the last time. She said she’d go back in a heartbeat if she experienced fresh trauma — but wouldn’t consider taking medication again, even for a serious slip.
“With an hour-long therapy session, you can record it and you can go back and listen to it and make your own notes, and you can reflect on that,” she says. “A year of meds didn’t supply me with any results at all, so I don’t think it’s plausible as an emergency stop button.”
Another aspect in Nichols’ recovery has been a part-time job coaching teenage cheerleaders. She fosters a sense of community with them, urging them to talk about the kinds of symptoms that derailed her own adolescence — eating disorders, depression, suicide, even hypoglycemia, from which she now suffers. “Just knowing how common these things are in their age group — I try to keep on top of what’s going on.”
“I have trillions of reasons to smile nowadays,” says the blonde and lightly tanned 25-year-old. “And I had the same reasons before — I just didn’t know it.”
Nichols deals with her body image every day, and her education is ongoing. After a childhood spent hoarding Twix bars and Pringles for pleasure, and a McDonald’s-obsessed adolescence, she wakes up every morning with a clean slate: She knows she has to eat her vegetables, but if she wants to eat a grilled cheese sandwich or chocolate bar, it’s okay. She doesn’t force herself to do exercise for exercise’s sake, but she’s an active cheerleading coach, choreographing routines for the team and taking dance classes. It’s all part of taking responsibility for her actions.
CALLING DOWN THE SUN
“It seems to me, from a lot of the folks I know, that it really requires a lot of patience, a lot of tenacity,” says Ashley McNamara, talking about her latest attempts to live medication-free. “It requires crashing and burning for a lot of people. And it requires experimenting with a whole bunch of different methods.” She’s currently on 100 mg of Lamictal a day, a very small amount of medication for someone diagnosed as bipolar I. And she’s been off lithium completely since April, when she started working with a homeopath to treat a debilitating rash that covered three-quarters of her body.
She wasn’t planning to try and go off her meds, not for another few years. But when a Western medical doctor told her that she had an incurable skin disease with no known cause and no known cure, and there was nothing they could do but inject her with steroids and cross their fingers, she sought help elsewhere. And what both she and her homeopath discovered in their individual research was that exposure to lithium can trigger psoriasis. And so, after a week of lithium-free living and homeopathy, her rash went into complete remission. But she was having huge mood swings, she remembers.
“It was like having all the most volatile, thin-skinned parts of myself return at the same time,” she says. “And I almost didn’t stay with it. But I just had this intuitive feeling that my body wanted to get rid of this toxic crap.” McNamara called her homeopath twice a day, who talked her through a lot of it. Finally, with a different homeopathic compound, her moods started to stabilize.
In late July, McNamara flew to New York to see her partner DuBrul, who now heads up the main office of the Icarus Project there. And though many things about the trip were frightening to her — flying, the fast pace of New York, seeing her family in Virginia — she kept her cool, taking just the Lamictal and not resorting to her emergency stash of antipsychotics to sleep. She spent time with the project’s East Coast members, many of whom she’d never met before. In addition to McNamara and DuBrul, there are five or six people on the staff, some of whom are volunteers, some part-time employees. All but one are bipolar; the other one is schizoaffected, which is a condition that displays elements of mania, depression, or schizophrenia. Most came to the project through reading Navigating the Space Between Brilliance and Madness.
Up till now, Icarus has been in a financial partnership with FJC, a New York-based nonprofit. But while McNamara was there, the decision was made to transition Icarus into being a workers’ collective. They spent time figuring out policies and procedures, figuring out how to make decisions horizontally rather than from the top down.
The next step for the project is to start regional groups, specifically college support groups. The members are putting together a handbook for the pilot groups, available in the fall and containing practical info, McNamara says, such as how to get started and how to get people talking once they’re assembled. One of the most important components of the handbook will be information on self-care and, specifically, instructions on how to create and use an advance directive, a sort of living living will created when a person is of reasonably sound mind. People can spell out medication specifics — what they’ll consent to take and what they won’t — and what hospitals they will or won’t go to. They and a witness sign it, and they give it to members of their support team.
“It’s really, in some ways, a self-determination thing,” McNamara says, “taking the power out of the hands of the authorities and putting it into the hands of the person who is trying to learn to take care of themselves, and encouraging all of us to be aware of our patterns and really think about what we can do to keep ourselves healthy, instead of waiting for things to go wrong and then doing damage control.” Everyone who joins an Icarus Project group will be required to fill out some form of advance directive, because, McNamara says, “one of the things we’re really working on is figuring out how to build an organization that is really healthy for people who have extreme mental health struggles to work in.”
Because perhaps even Icarus would have survived his flight, had his wings come with support or in-depth instructions.