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     Vol. 13, Ed. 9 March 4 - March 10 2004



COVER STORY

Keeping Faith

When the Alaska Psychiatric Institute tried to force pills on Faith Myers, who suffers from paranoid schizophrenia, she fought back - all the way to the Alaska Supreme Court

By Amanda Coyne

Photos by Matt Hage

The Anchorage Press, Anchorage AlaskaOn the night of February 21, 2003, Faith Myers was in her apartment on 33rd Street in Spenard. She was in her pajamas, finishing work on what she calls “learning centers” - little worlds with little towns, where she teaches imaginary children about flowers and plants, sidewalks and trees, trash and recycling.

To others, this might have seemed strange, but to Faith, 52 and a diagnosed paranoid schizophrenic, it was ordinary. She felt she was living a good life. In fact, it was one of the best periods in her life, she recently said. Certainly better than living with friends, or in a cabin, or in her car. Her apartment was an efficiency, not a castle, but she loved it nonetheless. It gave her space to roam, she said, to do what she does best: to get lost in her imagination. Most of all, her mind wasn't dulled by medication.

Faith had been on and off drugs to treat her illness for nearly 23 years. Faith had been off drugs for six months when the Troopers came. She thought everything was fine, thought she was doing fine. But her children feared they were losing their mother to her illness.

That night, as Faith taught her imaginary children, state troopers knocked on the door. When she refused to let them in, the troopers forced their way. Before she knew what was happening, the troopers had her handcuffed. She was soon on her way to the Alaska Psychiatric Institute, a state-operated institution for the mentally ill.

“I asked them if I could call my daughter,” Faith recalled. “They told me that it was my daughter who had signed the order. Then I asked if I could call my son, and they told me that it was my son who also signed the order.”

Faith had been in and out of API in the past few years, a few days here, a month there. This time, though, she spent more than four months there. API employees asked her to take medication, but Faith refused, saying she didn't like the side effects. When API tried to force her to take meds, Faith fought back - all the way to the Alaska Supreme Court.

Her case turns on the question of whether the state's main psych ward can force-medicate the mentally ill. Currently, when patients are unable to decide for themselves, API, with a court order, can force medications on its patients. API officials say they do so in the patient's best interests. Oftentimes, people who are suffering from mental illness don't recognize their need for treatment, according to API. In fact, their unwillingness to take medications is often viewed as a symptom of their illness.

The Anchorage Press, Anchorage AlaskaBut Faith claims API's staff made a mistake. She wasn't sick enough to be placed on medication, she said. She had already tried many of the drugs API wanted to give her in previous years and found they made her sicker. In the end, Faith says, her illness doesn't give API the right to force pills that she believes might harm her. At the very least, she argues, API and the state should offer alternatives, places where people with mental illness can go without being forced to take drugs.

Most API patients don't fight forced-medication court orders. But Faith has a private lawyer - a friend and an ally, a fellow traveler through the murky world of mental illness. Jim Gottstein, of the well-to-do Alaska family with same name, had medication forced on him at API in the 1980s. At the time, he had a “psychotic breakdown” after graduating from Harvard Law school. Gottstein, who was diagnosed with atypical psychosis, stopped taking the medications after he left API. Today, he said, he's free of the drugs and living a normal life. But, had he stayed on the drugs, he believes he would have been made “permanently mentally ill by the system.”

Throughout four months last year, API sought orders to place Faith on medications. But because Gottstein continually contested the orders, Faith avoided having to take the drugs. Dr. Aron Wolf, who saw Faith while she was in API and ultimately talked the staff into releasing her, described the battle as “a contest of wills.” Others have called it a pissing match, in part because of Gottstein's involvement.

Gottstein has long been on the side of those deemed the most unreliable of narrators - the mentally ill. His critics believe he's using Faith's dilemma to further his own beef with API and the mental health establishment as a whole. Gottstein has taken Faith's fight to the Alaska Supreme Court. At a hearing last month, he argued that forcing a patient to take anti-psychotic medications might cause more damage than good. And it's unconstitutional, he told the court.

What's being questioned is the country's assumption that mental illness is a mind disease that's best treated with mind-altering drugs. In the Prozac age, where pills are touted as a cure for much of what ills us, Faith's case challenges the way psychiatry is practiced in the United States.

She and her lawyer have been joined by like-minded groups and renegade psychiatrists. They accuse their foes - the mainstream psychiatrists and pharmaceutical companies - of permitting what amounts to a “chemical lobotomy.” Supporters of medication say drugs are a step forward in a profession that once depended on everything from lobotomies to insulin comas, electro-shock treatment to torture.

Inside this swirling debate is Faith Myers, suffering from paranoid schizophrenia, who would rather be left alone with her small worlds, small towns and imaginary children.

Maybe Faith Myers' problems began when her missionary father dropped her off at a boarding school in Thailand when she was four years old.  Maybe they began before that, with some regressive gene coursing through her veins, something that caused synapses to misfire, spawning a chemical imbalance in her brain. Or maybe when she was in the womb, her mother had an illness. Nobody knows how paranoid schizophrenia starts, who will get it or why they will get it.

But Faith suspects her problems stem not so much from her illness, but from the drugs themselves. It was nearly two decades ago when she was first prescribed psychoactive, or neuroleptic drugs.

Faith was about 30 then and living in Idaho. She was having a pretty hard time of it. She had a full-time job, was trying to make it through college and was raising two children. She was also dealing with a “troubled” marriage.

When she went to a psychiatrist, he told her she had “worked herself to a frazzle” and was experiencing post-traumatic stress disorder. Because the symptoms can include psychosis, he put her on Navane, a heavy anti-psychotic medication similar to Thorazine. It was the first drug she had ever taken for her illness. Navane helped her for more than 20 years, but then something happened.

It was 1997 and Faith was now living in Alaska. Her marriage had broken up. She had just left Tundra Tykes daycare as lead teacher to open up her own childcare center out of her home. But her life soon fell apart. She got into a car accident and was put on pain medications. She started to feel strange. Faith wondered if the pain drugs were counteracting the Navane.

A psychiatrist took her off Navane, not because he was concerned about mixing it with the painkillers, but because Navane is now an older drug that's been known to cause brain damage if taken for long periods of time. Faith started taking Risperdone for what was now a diagnoses of paranoid schizophrenia. Risperdone, part of a newer class of drugs called a-typicals, is thought to be much safer and have fewer side effects than older psychoactive drugs like Navane.

The Anchorage Press, Anchorage AlaskaBut Faith found Risperdone also had drawbacks. She started seeing things and hearing voices. It was as though the Risperdone had “punched a hole in her brain,” she recalled.

Faith later testified in court that she told her son, “Please take me to API, to a hospital, take me somewhere, to somebody who can take care of this, because otherwise you'll have your mother running through the streets with blue hair, screaming her head off.”

In May 1999, Faith checked in at API for a short stay. Staff sent her to get help from Southcentral Counseling, a community mental health service agency. Southcentral's solution to Faith's problems was to give her more Risperdone, and a little Navane, and a dose of Paxil, an anti-depressant, even though Faith never claimed to be depressed.

Now on a daily cocktail of three different drugs, Faith had no energy to work. She didn't have much money and no place to live. Faith decided the only way to take control of her life again was to wean herself off the drugs.

By February 2000, she was “like one of the street people,” she testified in court. “The whole problem I had was my homelessness, my lack of income, and the cold, which prevented me from sleeping well.”

Her children became increasingly alarmed, convinced their mother was getting worse. They blamed her downward spiral on her choice not to take medication. In December 2000, Faith's children convinced her to check in at API again. After six weeks, API's staff sent her away with a prescription of Zyprexa, another newer drug. (Zyprexa is API's most prescribed drug.)

Faith did pretty well for awhile. She met her life partner, Dorrance Collins, whom she calls her husband, and moved in with him. Then the voices and hallucinations came back, this time in “full force.” There were “sexual voices,” she said, and she hallucinated that she was being “raped.”

“It affected my husband and … o our life together,” Faith said. “It affected my whole life.”

Faith began believing Dorrance was too controlling, wondering if the Zyprexa had initially masked her awareness to Dorrance's personality. She once again weaned herself off medication. But now Dorrance and Faith were fighting. He kicked her out of the apartment often and she got picked up by the cops a few times.

Early last year, Faith's son found her an apartment on 33rd Street. Both her children thought she was taking the pills, but Faith quickly stopped after the voices started up. She got lost in a “creative haze.” She started teaching imaginary children, having the time of her life, until the troopers came to the door.

Today, it's hard to see that thing in Faith that made her children take such extreme action, and caused doctors at API to deem her unfit to make her own decisions. She's not normal “normal.” For instance, one might find it odd that she has a host of stuffed animals that she talks to, and that talk back at her, and who she writes stories about.

She can get angry. But then again, she says, “I don't suffer fools gladly.” In her world, she has been in the hands of a lot of fools.

There is a line of sorts when it comes to sanity. Faith believes she knows where that line is - it's when she can't control the voices, when they get too overpowering and break her will. But even when the world is closing in, she said, all she needs is space, a stress-free place where she can get lost in that creative haze.

She can get angry. But maybe it's only today that Faith is able to recognize that line, because as she was interviewed recently, she was on a low dose of Haldol, another psychoactive drug. She's taking it as a compromise to her family, to keep a relationship with them. She doesn't seem to know what the drug does, but she says she can tolerate it. Most importantly, it's been her choice to take it.

In comparison, when API staff tried to put her on Zyprexa, they believed her objections were a symptom of her illness, even though Faith said Zyprexa made her feel “crazy.”

She prefers to consider herself “eccentric,” not crazy. “I reserve the right to wear purple when I'm old,” she likes to say. “People should be allowed to act strangely.”

The Anchorage Press, Anchorage AlaskaFaith has long dark hair streaked with gray and a disarmingly gentle, sing-song voice. She speaks in very clear, very concise college-professor prose. She also has a great sense of humor about herself. Her partner Dorrance teases her about the stuffed animals, sometimes suggesting she talk to them, instead of him.

They spend most of their time at Dorrance's apartment, a small but pleasant place. It's filled with his original artwork and photos. They are both health conscious. Neither of them smoke or drink; although Faith said she reserves the right to have at least one drink a year to prove she isn't a prohibitionist. They each take lots of vitamins and walks each day, and their time together is filled with discussion of books and philosophy. Dorrence recently read a tattered copy of Voltaire's Candide that Faith bought him.

They met in 2000 when they both were at the Crisis Treatment Center, known as the CTC. The CTC is located next to API. It's where you can go when you're in crisis, but not in big enough crisis to be kept behind locked doors. In Faith's case, the CTC was like a halfway house, a place to go when she got out of API before facing life again. Dorrance was at the CTC because he was having problems with his memory. He has a low-level case of dementia.

When Dorrance asked Faith to marry him, he gave her his medical file, promising he would do everything in his power to keep her out of institutions.

He failed.

While Faith had been in and out of API over the years, she had never spent more than six weeks there at one time. That changed last year, when API held her for four months and sought court orders to force her to take medication.

Faith doesn't believe being forced into a little room and having to endure men pulling down her pants to shoot her in the butt with medication did much to improve her soul. But her children believe drugs are the only way to keep her stable.

Faith, on the other hand, claims her kids have always had trouble accepting her. They don't want a mother who is periodically homeless, who drifts in and out of creative hazes. They want to make sure their mother is safe.

Faith's daughter and son declined to talk about their mother, but court documents show their point of view. Rachael Humphreys, Faith's daughter, testified in court on March 5th, 2003, why she supported having her mother locked up at API last year and forced on medication.

In the months leading up to Faith's four-month commitment, Humphreys said she noticed her mother getting progressively worse, as though Faith had become a stranger to her kids. She described her mother's apartment to the court like this:

“There was this thing under her table and she said it was a bug condo … T There were piles of stuff everywhere … P Piles of dirt and pine cones and pine needles, and stuff in the corners, and there was that bug-condo thing … I I had noticed that she had been putting food out for the animals. She said they were for the stray animals.”

On Valentine's Day last year, Humphreys and other family members visited the apartment. Inside Faith's closet Humphreys found a cake and a strawberry sitting on a shelf.

“I said, 'Well, what is that?' And (my mother) said, 'That's for the critters that come to visit me,'” Humphreys testified in court. “I said, 'Mom, you can't be feeding things in the house. You're going to have all kinds of creatures and critters and problems.' And she got really upset and said, 'You can't tell me how to live. You live by your standards and I'm going to live by mine … A And you keep your house the way you want.'”

Faith got “really, really angry” and began yelling, Humphreys said. Humphreys worried her mother was going to hit her. “She said that all children were monsters,” Humphreys told the court, “and she started screaming at (my daughter) Alyssa.”

A few days later, Faith's son and daughter-in-law, Mike and Arial Myers, got a phone call from the manager of Faith's apartment. He said Faith was acting weird and leaving threatening notes. The manager threatened to evict her.

Her children agreed something had to be done. Humphreys and Ariel Myers were the ones who signed the papers to commit Faith to API last February.

After the troopers took Faith away, her children went back to her apartment. They noticed a crawl space under a closet. It looked like somebody had been camping out there. Humphreys didn't know what to think.

In the past few years, Humphreys testified, “just everything has been so … m much worse. And, you know, some things I write off as … j just being eccentric, and some things I go, 'This is not just eccentric, this is unhealthy.'”

To be committed to API and forced to take medications, the patient must be found to be a threat to himself or others. That requires two psychiatrists to say it's necessary for the patient's safety and a court finding that the patient lacks the ability to consent.

Elizabeth Brennan, a public defender who handles such cases, said API wins about 99 percent of the orders in court. She said she handles as many as 20 orders a week, although most patients don't fight API. That's because many patients agree to stay at API and take the drugs, rather than go to court. When they do fight it, the process lasts about 10 minutes.

When API wanted to commit Faith last year and force her to take medication, lawyer James Gottstein immediately got involved. The court hearing lasted more than five hours.

Gottstein has argued that there's too much at stake to leave it solely up to psychiatrists to decide whether Faith needs drugs. He wants the state to provide more oversight on such decisions, as well as alternatives to medication.

API fought back, saying the whole system would break down if such decisions are left to judges. They say doctors and mental health professionals should decide whether drugs, and what kinds of drugs, should be forced on patients. As for alternatives, API contends medication is valuable to patients. In fact, they say, it's often the best treatment.

At Faith's first court hearing last March, state Superior Court Judge Morgan Christen found the way Faith had been living “disturbing.” Faith had a tenuous grasp on reality, the judge said. She had been feeding wild animals and probably sleeping in a crawlspace (although Faith denied she slept in the crawlspace.)

At the hearing, Dr. Robert Hanowell, Faith's psychiatrist at API at the time, said that kind of living was a symptom of schizophrenia and posed risks to her safety.  API's lawyer asked Hanowell if Faith was capable of participating in the decision of putting her on medication.

“Regrettably, I don't feel she's capable of that at this juncture,” Hanowell replied, adding that neither was Faith capable of “reasonably” objecting “to the treatment offered.”

Faith took the stand, dressed in a blue API uniform. She talked about her history with drugs, starting when she was a frazzled housewife. She talked about how sick the drugs made her and why she chose not to take them.

“That seemed to be the major problem with my whole family,” Faith told the court, “who continued to say I was sick and I needed to get back on my medicine, and I did not want to be on medicine. I felt it was a violation of my rights to choose. And I was not harming anyone, I was talking care of myself… T The medication does not allow me control over my choices and my life.”

She went on to explain her fictional “learning centers.” As a former teacher, she said, she wanted to create a fun place for her grandchildren. Faith said the dirt and pine cones her daughter found in her apartment were to teach her grandchildren about trees and nature.

Yet, as she explained herself, it was unclear whether Faith was talking about her grandkids or her imaginary children. “We learned how to take care of the woods, and what was affecting the animals. We learned good food for the animals.”

When asked if the children she was teaching were real, Faith said, “Well, this is confusing to me, but then I don't really question anything anymore … I I've simply learned to deal with what I have in my life and I've learned to cope with it and I've learned to make it better.”

Not everybody believed Faith was a threat to herself and needed to be on drugs. Two private psychiatrists who saw her at API said she had good reason for rejecting drugs.

Dr. Doug Smith, director of mental health services at a health clinic in Juneau, saw Faith last April. He said in written testimony during another hearing that Faith was “quite intelligent and capable of discussing rationally the risks, benefits and effects of medications.”

Asked if she was a threat to herself or others, Smith said Faith “can be argumentative, provocative, angry and loud at times. This has been true over many years. But it would be a far stretch to describe her as likely to cause serious harm.”

Neither did he believe Faith benefited from staying four months at API. “It appears that the treatment approach (at API) relies almost exclusively on medications and 'medication education',” Smith testified. “Since she is refusing medications, it seems to leave nothing in the way of meaningful treatment.”

When Smith prescribes medication, he said he does so very sparingly. He feels like modern psychiatry relies too heavily on medication. API's lawyer has called Smith an “activist” doctor.

Dr. Aron Wolf saw Faith last June when she was still in API. He is not an activist doctor. He believes medication is helpful for his patients, but only to the extent that they want it. He equates it to a cancer patient who refuses chemotherapy, even though he or she might die.

Wolf neither thought Faith was gravely disabled nor a threat to herself or others. He believed she just needed to be listened to.

In the end, Judge Christen ruled in favor of API. But she did say there was a legitimate debate among qualified experts about whether some drugs used by API are the most effective way of handling patients like Faith.

James Gottstein, Faith's lawyer, appealed and appealed, all the way to the Alaska Supreme Court, which is now reviewing the case.

Since Faith was in API, the facility has hired a new director and a new medical director, Ron Adler and Dr. Duane Hopsen. They declined to comment on Faith's case. But Wolf and others who are familiar with API said things might have been different for Faith had Adler and Hopsen been in charge last year spring. Among other things, the staff might have listened more to her.

API is a far cry from the asylums of yesteryear. On a recent tour, Adler seemed to know every employee and every patient. He agrees with Faith and her lawyer that there should be more options for the Alaska's mentally ill than facilities like API which by design are organized to mainly handle only short-term, acute crises. Adler also believes those suffering from mental illness should have a say in the drugs they take.

However, Adler defends API's policy on forced medication. Without that option, he said, API would be dangerous. “I see people going back to work,” Adler said. “I see people recover,” even people who have been forced to do so.

But Gottstein questions API's approach. In his appeals, he includes reams of studies and articles that say drug therapy to treat mental illness isn't always safe. Studies have shown that some drugs can prolong dependency, are less effective than a placebo, and can cause hallucinations, long-term brain damage and heightened “psychotic relapse.”

The history of psychiatry is rife with failures and “cures” that have later been considered, well, insane. Indeed, if Faith had been born before the 1950s, when the first neuroleptic drug, Thorazine, was discovered, she might have been subject to various methods of torture, including bleedings, purgings, chemical injections to produce nausea, blistering and water immersion. She could have been sterilized or undergone a lobotomy. Faith might have ended up at Morningside Hospital in Oregon, the facility charged with tending to Alaska's mentally ill until the 1950s, and subjected to an “insulin coma.”

Gottstein fears many of today's drugs for the mentally ill might prove to be another sore chapter in psychiatry, one fueled by an ever-growing pharmaceutical industry that controls information on the drugs and their effectiveness.

Faith might be right about the drugs causing her problems. All of the medications she was on blocked chemical receptors in the brain, chemicals that are thought to produce symptoms associated with mental illness. An a-typical drug, like Zyprexa, blocks many receptors. Older drugs, like Navane, block only dopamine receptors. The prevailing theory is that schizophrenia is, in part, caused by the overabundance of dopamine.

There are some studies that show that blocking dopamine receptors only causes the brain to produce more dopamine receptors, which, when the blocking is over, allow too much dopamine to enter the brain. This can lead to a dopamine overdose, producing angry outbursts, odd behavior and hallucinations.

That could have been Faith's problem. She might have never needed such a strong drug in the first place. She might, in fact, never have even been schizophrenic.

Faith and others who have been on these drugs say they've experienced horrible side effects, feeling empty, dead or less than human. And like Faith, some would prefer to hear voices over dullness.

Then again, for as many people who have had a bad experience with these drugs, many others credit the medication for saving their lives.

“I can honestly say that forced medication actually helped me to begin my recovery,” said Beth LaCross of Kodiak. “It's kind of a shot in the dark, and when you finally find the right medication it is like a miracle come true. You begin to wake up and notice the world more.”

There is no definitive test for mental illness. Nothing in one's blood or brain can tell doctors that one person is mentally ill and another isn't. There's nothing in fact that tells us why blocking certain receptors works, or why some people respond to the drugs and others don't.

The diagnosis for schizophrenia is particularly complicated. You can act schizophrenic but actually suffer from bipolar or a personality disorder. In other cases, you can have a single psychotic episode that resembles schizophrenia, but never have one again.

“Defining mental illness is such a complex issue,” said Dr. William Campbell, a psychiatrist in Anchorage. “Are you crazy if you walk around naked and live in trees? Well, plenty of people certainly do that. And, if you're rich, and you behave in such a way, might you just be labeled 'eccentric?'”

Detecting mental illness, Campbell said, is akin to that famous line about pornography: “You just know it when you see it.”

Aleen Smith, a lawyer active in Alaska's mental health community, said the issue comes down to this: should we let people, regardless of societal costs, be as sick as they want to be? She thinks the answer might be yes.

Then again, Smith saw Faith when she wasn't on her medication. She described Faith's condition at that time as a “very, very sad thing,” adding that she sympathized with the tough choices Faith's children had to make.

Others who know Faith said the drugs dulled her. Gale Barnett met Faith in church seven years ago and lived with her for awhile, both when Faith was on and off medications. On the medications,  “Faith wasn't quite Faith anymore. She walked differently, she talked differently. She lost her happy disposition,” she said.

When Faith stopped taking medication, Barnett noticed she went through a hard time at first, but then seemed to be just fine. She trusted Faith with her five children and actually thought she might be the best babysitter she ever had.

“I'd come home and all their faces would be painted like butterflies,” Barnett said. “It was wonderful. She has such a spark, such life. Sometimes I wonder if she's the one who's sane - who sees the world as it really is - and we're all the ones who should be walking around with a label.”

Faith had a rough time when she was released from API.  She even went back for a while, after her father died.  That's when she discovered the Haldol. But now, she had a place of her own to live. She spends most of her monthly disability check to live there, she says. But it's worth it.

Today, even after Faith spent months fighting to get out of API and off drugs, she chooses to take medication. She says she does so to keep her relationship with her children. Having a hand in the decision, Faith says, is much better than somebody demanding she stay on drugs, even if means she loses some of her ability to get lost in her mind, to wander there and see and do beautiful things.

Every month Faith gets a shot of Haldol, which releases a small daily amount of the drug into her system. She's having a few problems with it now - restlessness, trouble sleeping, short-term memory loss and a little dulling of the mind.

But the side effects might be worth it. Haldol might keep her on track, or at least help her live a life that looks on track to those around her. The question is, however, is Haldol helping her or has she found a calm space of her own?

Faith still has learning centers, but now they're kept neatly in a closet. The bug condos have been replaced with a single cricket house. She doesn't leave food out for wild animals, except for the birdseed she throws out her window.  

Her neighbors seem to enjoy her. A Russian woman who lives upstairs asks Faith about her pet cricket. The other neighbor says hello when she comes home. Mormon missionaries visit weekly. She's not a Mormon, but she likes their sense of community. She likes that they take care of their own (She suspects, though, that Joseph Smith might have been a “little schizophrenic.”)

Maybe the drugs are helping, maybe not. Those around her seem satisfied she's taking them. But to her, medication has just made her life infinitely more complicated, and tiring.

Faith tries her best to appear “sane.” She's not sleeping in any crawlspaces. She's getting along with her neighbors. She chooses her words more carefully.

In the end, it might be a bit of an act. She doesn't think she has fundamentally changed, she just has a better idea how to “act” normally. Faith is terribly afraid of being locked up against her will again, going crazy fighting the system.

“Trying to appear normal is so much work,” she said.

Contact Amanda Coyne at amanda@anchoragepress.com or (907) 644-5407.



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