Merry Christmas!

In the distant mists of holidays past, before the millennium, I started writing annual letters for my friends and family and sending them in December. I was inspired by my grandma Betty, who enclosed a typed and copied family newsletter with her Christmas cards. It wasn’t long before my plan was set askew by the vagaries of my life. One year, I did not write at Christmas because I was deeply depressed. On other occasions, I sent letters at different times of the year to announce a change of job or address.

This year for the first time, I am placing the letter on my blog, and I’m mailing Christmas cards with a link to this page. I am grateful to report that my mood is happy and steady, and I continue in the same great job I’ve had for more than three years in Augusta, Georgia: Certified Peer Specialist in the Department of Psychiatry and Health Behavior, Medical College of Georgia. I am writing this letter in the office of the National Alliance on Mental Illness affiliate here in Augusta. I’ve been the president of NAMI Augusta for the better part of three years. It is a very fulfilling role that I enjoy.

I do have a new address. In September, I rented an apartment in the Belvedere neighborhood adjoining North Augusta, South Carolina. Mail to the apartment can be sent either to Belvedere or to North Augusta. My previous address in Columbia, South Carolina, is also valid, because I spend a good deal of time there with my partner Judy. Having the apartment as a home base just 15 minutes from work has eliminated two hours’ worth of commuting from my daily routine. I love it!

I have been writing a column titled “Checking Realities: Consumer Perspectives” for the quarterly journal Clinical Schizophrenia and Related Psychoses. The column intallments are available in .pdf format on the web site of Project GREAT, my work. I’ve also posted them on this blog as the previous five entries.

To all of you and yours, happy holidays and a prosperous New Year.

By Gareth Fenley. Published in 2009.

My friend R. loaned me another book to express his thoughts about involuntary treatment. The Soloist tells the true story of a journalist’s relationship with a street musician who, like R., has schizophrenia. Inside the cover is written, “Gareth pg. 82, 93, 94.”

As the story begins, Los Angeles Times columnist Steve Lopez encounters a man playing classical music on an eccentrically decorated violin with only two strings. Intrigued, Lopez investigates and learns that Nathaniel Ayers, who is now homeless, studied at the prestigious Juilliard School some thirty years earlier, until he suffered a breakdown and dropped out. Lopez writes a column about Ayers and then finds himself overwhelmed by readers who expect him to deliver donated instruments and connect Ayers with housing and medication.

Seeking mental health professionals who will take over this case, Lopez recruits outreach workers from a recovery-based agency. Ayers rebuffs their approach, and the workers tell the dismayed Lopez that he is now the best thing Ayers has going, along with the passion for music that gives him a purpose in life. As Lopez works to tempt Ayers into moving indoors, he meets Dr. Mark Ragins, who teaches him the basics of the recovery model. Then another psychiatrist (who wishes to remain anonymous) contacts Lopez to blast the recovery model and advocate assertive treatment. The unsettled columnist tries hard to identify the most effective choice.

On page 82, R. underlined the advice of Dr. Rod Shaner, medical director for Los Angeles County: “They’re both right.” And on page 83: “There is no right or wrong, and there are no absolutes.” People are people. No two are alike. Lopez was learning that people who have been forcibly treated often resist new attempts to help them.

The next notations for me are on pages that describe Lopez’s visit to a conference of the National Alliance on Mental Illness. He meets Carla Jacobs, who has become an activist after her sister-in-law murdered her mother-in-law “in a psychotic rage.” Jacobs is now campaigning to end preventable tragedies through legal intervention, and she tries to recruit Lopez, telling him that Ayers “won’t get better without treatment.” Forcing it on him is the most humane choice, she says. But Lopez wonders whether medicating Ayers against his will would make him more or less inclined “to trust authority and go along with a treatment plan over the long haul.” By the end of the conference, Lopez is muddled about what to do next.

R. acknowledges the complexity of this issue based on personal experience. He went through multiple commitments to state hospitals until, during one memorable conversation, one psychiatric nurse got the message through to him that faithfully taking medication is a good idea. Today, R. is living with his fiancÈe in his own house, driving his own car, helping his family, making friends, volunteering, and writing letters to the editor of the local newspaper. He advocates involuntary outpatient treatment as a legal option. R. once told me that a certain member of his support group should be mandated to take medicine “because he gives a bad name to people with schizophrenia.”

I read The Soloist through to the last page, finding it richly compelling as Lopez describes how he and Ayers developed a mutual admiration that deepened to friendship and brotherly love. I was eager to see the movie based on the story. I was especially interested after learning that approximately five hundred homeless people were paid to participate in scenes filmed on location. More interest was drummed up by statements e-mailed to me by two of America’s foremost mental health advocacy organizations.

“The Soloist … dramatically illustrates the importance of voluntary access to treatment and the effectiveness of supportive housing,” declared the Bazelon Center for Mental Health Law, which advocates for advance directives and other avenues of self-determination for people with mental illness.

“The Soloist is one of the best movies ever made about schizophrenia,” stated the Treatment Advocacy Center, which advocates changing laws to widen powers of involuntary treatment. “[W]hat really sets the movie apart is its discussion of whether Ayers should be involuntarily hospitalized and treated. In the end he is not, like most of the rest of the homeless mentally ill persons depicted in the movie. The Soloist is thus a Hollywood promo for why the Treatment Advocacy Center exists.”

How could these opposing viewpoints both find support in the same motion picture? Perhaps it depends on whether we see the story as a recovery journey for Ayers or a depiction of his continuing desperate plight.

Or perhaps voluntary and involuntary care are not absolutely opposing methods, after all. It seems to me that there is a spectrum of approaches in the mental health professions that involves varying degrees of invitation and coercion. Furthermore, the legal and clinical definitions of what treatment is meted out or offered may have little or nothing to do with what is perceived by consumers and families.

In mental healthcare, based on my own experiences and those shared by my peers, I believe that the objective facts of what is done to a person are less important than the subjective connection made with a person, often under the most unlikely of circumstances. There is no best technique. There are superior practitioners.

If I am right, the question of how to solve the toughest problems in psychiatry, including homelessness, becomes a human resource question. As The Soloist portrays, one true friend can be key to recovery. The United States federal government is well on board, spreading that message with its “What a Difference a Friend Makes” public health campaign, which is targeted at young people.

What about psychiatrists and other professionals? How should our mental health work force be trained? My department at the Medical College of Georgia is teaching the recovery model to enhance the conservative training our residents also receive. Having myself and Denise Noseworthy on staff as Certified Peer Specialists is at the heart of this effort. Denise and myself are openly self-identified consumers trained to constructively share our perspectives, and we do it in virtually every activity of the department, from interviewing residency candidates to lecturing to participating in rounds and committees.

I am very proud to say that I haven’t heard a stigmatizing comment from anyone in our department since I was hired in 2006, unless you count the conventional use of language such as “patient” and “schizophrenic” as a noun. This stands in sharp contrast to what I have heard when professionals were not aware a consumer was present. Too many have developed inexcusable ways of coping with the inevitable demands of their jobs. I don’t want to receive care from anyone who would ridicule psychogenic movements or characterize frantic attempts to elope during a commitment as a hilarious “war story.”

I think that many idealistic students enter medical professions with heroic dreams. During their first clinical adventures in psychiatry many, if not most, confirm or acquire disillusionment about our field. They tend to see consumers at our worst. They learn the message that we are beyond hope. Even those who choose psychiatric careers are often touched by depersonalization of the individuals for whom they are caring. Jokes and stereotypes take hold. As clinicians enter practice and gain seniority, the worst ones seem to regard us as empty souls who are entirely lost, for whom no further emotional damage is possible, and they make denigrating comments right before our faces.

Perhaps these clinicians want to believe they are not responsible for mental health outcomes simply for their own sanity. The business comes with a lot of bad outcomes. But I’ve seen people saved, just as I have seen them ruined. Nathaniel Ayers was ruined by his illness and further ruined by treatment in his early yearsógetting yanked out of his life and into the psychiatric system of the time. As the book (but not the movie) makes clear, Ayers was traumatized by treatment; he actually thought the shock and drugs were punishment. From my perspective, Ayers is saved by the relationship with Lopez and ultimately others he begins to trust, including mental health workers.

It is hard to trust when you’ve been hurt. Receiving mental healthcare usually means getting some kind of hurt, whether that means side effects, stigma, or worse. Before I got a job working with psychiatrists on a daily basis, and was simply seeing them as a patient, I wrote:

The main thing I know is that doctors are gods. Greek gods. They live on Mount Olympus with each other and they interfere with us. We hope they are good, because they are powerful, but they are merely a flock of memorably distinctive characters, prone to arrogance and full of the same flaws mortals display.

I really do like Western medicine, believe it or not, but the doctor mind-set inevitably separates a person from me in the most fundamental way. I’ve met ones I adore and ones I despise over the years, but there is always that separation. Managed care has tried to take doctors out of the clouds but they are still floating. For every person who wants to be an informed partner in care there are five who want to burn incense. The relationship is by no means created by the doctors alone.

It seems to me that most of the ethics credits in American continuing education for mental health professions are earned by lessons in how to avoid lawsuits. If you ask me, that is missing the main point of what goes on. Very, very few of us who have been hurt ever sue, even if we believe we have grounds for malpractice. Like myself, a person may want to keep a professional relationship going or, like Ayers, someone may feel the best way to stop hurting is to get away, even to the street. I don’t think most people tell doctors how much treatment has hurt them, and when they do, “lack of insight” tends to take the blame in the doctor’s estimation.

Families are the ones most likely to be full of the outrage, energy, and independence from the doctor’s opinion to file lawsuits. And the greatest liability risk among mental health professionals, especially Americans, is being sued by the family after a suicide.

Ironically, intervention to prevent suicide, unless skillfully done under the right circumstances, can lay the foundation for a future of refusing to cooperate with treatment. When I read about someone who committed suicide after leaving a hospital, and the lesson of the piece is that we need more hospital beds to keep more people in longer, or more laws to make more people take more drugs, I wonder why the author never explores any conceivable causal relationship between what happened first and what happened second.

Thoughts of this kind tend to stir in my mind during depressions. I write them down and fish out bits for use later when I can be productive, such as today. The preceding dark paragraphs originated a few years ago when I was in a very deep pit. I spent most of my time in bed and sometimes I did not eat. I didn’t get my mail for a month. My gas was turned off and my bills went into collections. I paid my rent and credit card bills with drafts on other credit cards. My last client’s need for my part-time freelance work diminished to zero.

I came to a point where I could see myself becoming homeless soon. A person with no money in a rented apartment can only go without income for so long, and I was too hardheaded to move in with my family again, not that anyone was extending the invitation. My friend R. suggested I apply for Social Security disability while I still had a recent record of middle-class earnings, and said he would let me stay in his bedroom and help me look into housing for the homeless mentally ill.

Instead, I answered some classified ads. And I got a job.

I can do impossible things of this kind because I have always been loved and the love has never stopped. What I have received hasn’t always been exactly what I wanted, but it has been there. Even when one person’s love stops and it breaks my heart, I still have others who stay in my life, and I have a way of finding new ones. They believe in me and help me to believe in myself. Just as Steve Lopez rekindled the spirit of Nathaniel Ayers, and Ayers touched Lopez with his love as well.

The cover of The Soloist says it is about the redemptive power of music. I disagree. I would say that both the book and the movie are about the redemptive power of love.

Gareth Fenley is a Certified Peer Specialist within the Department of Psychiatry and Health Behavior, Medical College of Georgia. Ms. Fenley also serves as President of the National Alliance on Mental Illness (NAMI) affiliate based in Augusta, Georgia. She can be reached at gfenley@mcg.edu.

Reference: Lopez S. The Soloist. New York: G.P. Putnam’s Sons; 2008.

Citation: Fenley, G. (2009) Checking realities: Consumer perspectives; Lessons from The Soloist. Clinical Schizophrenia and Related Psychoses, accessed December 17, 2009, at http://www.clinicalschizophrenia.net.

By Gareth Fenley. Published in 2009.

To keep perceiving and working as a person who receives treatment, I make conscious efforts not to turn into someone who thinks like a treater. I share what I learn through my own life and through what others share with me because of our common experiences. That enables my unique contribution as a peer specialist within an academic department of psychiatry.

I like to tell mental health professionals, “From the viewpoint of psychiatry, insight is a measure of how much I agree with you.” As I see it from a consumer perspective, my insight is my wisdom. It is a useful awareness of what I experience from my inner self outward. In saying useful, I am separating self-awareness that helps sustain me in a practical way from anything that drags me into ruin. This includes how I perceive worldly reality and transcends it, moving into the spiritual realm.

The language we use to express ourselves tells others a story of what our insight reveals to us. In the jargon of my social movement, I can see myself as a psychiatric survivor. Professional practices have caused me devastating harm. For example, I lost my livelihood in two careers, went bankrupt, and became nearly homeless as disabling attacks struck me for four years. The nature of the problem was finally diagnosed and communicated to me last month at a follow-up appointment after an inpatient stay. In the hospital, a nurse had asked me, “Why are your eyes rolled up?” A week later at home, I typed “eyes rolled up” in Google and discovered that I had been suffering oculogyric crisis, a side effect of antipsychotic medication. My psychiatrist confirmed the diagnosis and changed my medications again. That’s three med changes within the past month. I mean, that was three — I just got off the phone with him, and it’s four now.

I could be angry about it. I was for a bit. But, still believing that psychiatry offers the best approach fitting me, I have continued to return as a voluntary customer. I call myself a consumer. I even choose to keep working peacefully inside the system that poisoned me. That is my vocation at this point in life. Other individuals have developed anti-psychiatric ideology fueled by righteous rage, and they work to abolish what I am trying to reform. They may call me a sell-out or shill. I would rather call them my peers, along with other consumers. We all have been subjected to medicine’s most coercive and scientifically primitive specialty.

When I find myself in a mixed group of folks with these perspectives, our conversations may deteriorate into arguments or standoffs in which the intangible is political. I can easily understand why psychiatry so often and so unfortunately generates adversaries. While the treaters believe they intervene with people “crying out for help,” the treated much too often feel we are being subjected to uninvited threats, yelling, abuse, violation of rights, or robbery of self-respect. During psychiatric encounters, generations have shouted or sobbed, “I’m not crazy!” We can’t reconcile the stigmatized image that society has taught us with the selves we know. To be crazy means owning all the ridicule, shame, and terror associated with lunacy.

In recovery, we deal with stigma and keep our lives moving with what we see as meaning and purpose. For some people, chapters in this journey involve leaving treatment behind. Many reflections upon lived experience by ex-patients are deeply insightful. In The Wind Never Lies (1), Steven Morgan explains how treatment compliance replaced his authentic inhabiting of self with a dulled, generic life that he found unsatisfying. Aubrey Ellen Shomo’s The Manifesto of a Noncompliant Mental Patient (2) rebuts psychiatric observations of her conduct point by point. In these brief, recommended readings, both writers explain why they stopped working with physicians and moved on to risk departing from what Morgan calls the “mental illness world view.”

The rising enthusiasm for trauma-informed care among mental health recovery leaders stems partly from a rejection of the illness perspective — the viewpoint of the frustrated hospital psychiatrist who scrawled across the page of a chart, “Abysmal lack of insight!!” Survivors may understand psychiatric episodes not in terms of symptoms expressed from within, but as assaults upon the self by a system that attempted what it calls treatment.

There was a time when I resisted treatment, but I later become cooperative and grateful. There are many of us. I asked a friend of mine who has paranoid schizophrenia to share that view with me in words. He loaned me his copy of I Am Not Sick, I Don’t Need Help!: Helping the Seriously Mentally Ill Accept Treatment (3). This popular book by psychologist Xavier F. Amador, who has done extensive work on insight in psychotic disorders, is explicitly addressed to families and therapists, but it also helped my friend express himself. Amador instructs his readers in how to be helpfully sensitive to persons perceived as needing treatment while they are refusing. Uncommon patience and respect are required for this to work.

As I considered the nature of insight, I met peer specialist Sissy Weaver, who was selected to make a conference presentation as a role model for the National Alliance on Mental Illness. She described hearing voices and receiving several psychiatric diagnoses as her life fell apart and medication made her obese, then regaining athletic fitness and securing work with a consumer-run mental health agency. Remarkably, given the organization that had invited her to speak, Weaver told the audience, “I don’t accept that I have a mental illness.” I arranged to interview her later to help me understand her view better. “Acceptance would feel like a defeat,” she told me as we sat at a table in a public library. “What I have is awareness. I am aware of symptoms and that I need to take medication.”

Sissy Weaver is using mental health care in a way that works for her as she pursues her own goals. Nobody seems to be demanding that she dutifully recite, “I accept that I am schizophrenic and I will have to take medication for the rest of my life.” I am schizophrenic. I am bipolar. I am sick. I need help, and I will need it forever. Internalizing this psychiatric creed tames treatment resistance at the expense of equating the self with disease.

Novelist Clare Allan, who writes about her own experiences for the British newspaper The Guardian (4), writes that “mental illness can become a way of life as much as a medical condition.” She compares it to removal to a faraway place where “everything else falls away: job, home, family, ambitions, the sense that things will ever be different from the way they are now.”

I don’t take it for granted that I will stay out of that faraway place. I negotiate to keep a semblance of a middle-class lifestyle while remaining aware of what I call mental illness. At tricky moments, it can be like standing with one foot on a dock and the other foot on a boat. Recovery is the art of staying above water — or climbing back out after I’ve been dunked.

Journaling is one tool that helps me maintain or regain my balance. I have been keeping diaries on and off for more than thirty years. I find it an excellent aid to self-awareness. I am able to privately express my often elusive and sometimes deranged thoughts. Then I can check and reflect on them later, when I’m in a thoughtful and sometimes newly rational state.

Last month, I was writing routinely when I jotted down some thoughts about being the Messiah. I continued to write about other things that were passing through my mind. When I re-read the page, I recognized that something was a bit off. I then picked up the pen again. I wrote that if I am the Messiah and I go to start a new religion, I will have to end my relationship with my life partner and be single, and I would not want to do that because of how much I love her.

It was the thought of loss of family love — not any direct recognition that I’m not the Messiah — that helped to keep me from falling into the water. Over the next few days I was able to process more thinking about this and get to a point where I made the decision to go to a hospital for evaluation and admission.

One evening there, a nurse woke me from a deep sleep induced by medication and asked me to tell my story. I was too groggy to think, and she cued me with the prompt, “You found something bizarre written in your journal.” I resented the way she put that, because I didn’t find my own thoughts to be bizarre, but I did not contradict her. I have become somewhat wise in the way of hospitals, and have adopted the motto “Go along to get along” for personal use during inpatient stays.

I have intentionally selected “Checking Realities” as the title for this column presenting consumer perspectives. I would not go as far as recovery advocate Linda Buckner, who memorably told an audience of psychiatrists and psychologists, “Take the word reality out of your vocabulary.” Reality is a very useful concept if we can understand that insights into it vary person by person. Goals form within visions of reality. Insight works for us in a practical fashion to keep us able to sustain movement toward the goals we desire to reach. I turned down what seemed to be a new calling in favor of my family, as well as my job. In the balance of freedom and security, I chose to be relatively secure. I don’t believe that a condition named mental illness should deprive a person of the right to pursue happiness.

On behalf of those who are identified as patients, I would like to share a few final bits of advice to professional and family caregivers. Please encourage awareness instead of demanding acceptance. Educate yourself and others at every level. Offer help before involuntary treatment is legally necessary, and gracefully allow us to refuse if we say no. Work to understand why we may not desire treatment. Be sensitive to our own insights as we understand them. Keep extending kind and patient offers to help. Surround us with that which we value on our own terms, instead of intervening in a way that we find harmful. Be mindful of long-term consequences. Respect us and discover what you can learn from us as we are. While these suggestions certainly will not end all the problems of psychiatry, I believe they can make it safer and healthier for all concerned.

References

1. Morgan S. The wind never lies. Accessed February 16, 2009 at http://www.vermontrecovery.com/files/Download/TheWindNeverLies.pdf

2. Shomo AE. The manifesto of a noncompliant mental patient. Open Minds Quarterly 2007;9(1). Accessed February 16, 2009 at http://www.aubreyellenshomo.com/manifesto.php

3. Amador XF. I am not sick, I don’t need help!: helping the seriously mentally ill accept treatment: a practical guide for families and therapists. Peconic (NY): Vida Press; 2000.

4. Allan C. Back to reality. The Guardian 2007 January 3. Accessed February 16, 2009 at http://www.guardian.co.uk/society/2007/jan/03/mentalhealth.socialcare

Gareth Fenley is a Certified Peer Specialist within the Department of Psychiatry and Health Behavior, Medical College of Georgia. Ms. Fenley also serves as President of the National Alliance on Mental Illness (NAMI) affiliate based in Augusta, Georgia. She can be reached at gfenley@mcg.edu.

Citation: Fenley, G. (2009) Checking realities: Consumer perspectives; Insight. Clinical Schizophrenia and Related Psychoses, 3, 64-66.

By Gareth Fenley. Published in 2009.

I have been slipping off the balance beam of my life as my routines are disrupted by mental illness. Some familiar and disturbing phenomena have reoccurred, with consequences both familiar and new. More unsettling to me than the symptoms themselves has been the fact that my diagnosis is up in the air.

A consulting psychiatrist examined me and concluded that I had schizoaffective disorder eleven years ago, but that opinion was brushed aside when my recovery from a psychotic break proceeded so well. My psychiatrist diagnosed me with bipolar disorder. I told him more than once during early days of treatment that I was worried about having schizophreniaóan illness I knew almost nothing about that rang like a great bell of doom in my mind. The doctor reassured me that I did not have it, because, he said, schizophrenia is a disease of lifelong progressive deterioration, and I had a good prognosis. He said that when he diagnoses a person with schizophrenia, “it’s time to call the family in.”

My relatives never did care for that doctor because he didn’t talk to them. I held him in high esteem. He was very good with me. He often talked me into following his medical advice when I didn’t want to. And at a critical moment when my therapist recommended that I apply for Social Security disability, my psychiatrist said, “You probably could qualify, but you shouldn’t. You always do best when you are working.” His few confident words inspired me to stay in the job market.

Over the years, my interests and career have led from journalism into mental health. I became well informed about psychiatry. I was eventually surprised to learn that a recovery-oriented outlook can be favorable in people diagnosed with schizophrenia. The more time I spent with these individuals in my new vocation, the farther I traveled from the time I met a young woman who was visiting my undergraduate college twenty-five years ago. She confided to me in a private conversation that she had a disability. “What kind of disability? You can tell me,” I said, with all the naive confidence of a sheltered teenager. “Schizophrenia,” she finally said in a low voice, and I found myself horrified and speechless. She soon left my presence and never returned.

Informed and much humbled by the events of the subsequent quarter century, dutifully appearing to renew my own prescriptions for psychiatric drugs, I sat down in my psychiatrist’s office chair one day last year and announced, “I’d like to ask you about my diagnosis.”

He gave me one of his level-headed looks. “You have a dopamine problem with an underlying affective disorder,” he said. I tried to get him to put that in terms of something I could identify in the DSM and he refused. “You know how they write that book,” he said dismissively. I suppose I know a little about it, and I now work with one of the guys who is writing the next edition, but I didn’t want to waste my precious twenty minutes on an argument. “In psychiatry, you don’t treat the diagnosis, you treat the symptoms,” he said to me. “Don’t worry about your diagnosis.”

I am beginning to suspect that he believes I have schizoaffective disorder after all, but he wishes not to stir up my mind and is going along with one of his often repeated treatment philosophies: “Don’t rock the boat.” Or maybe that’s just my paranoia talking. In any case, I am left to speculate about his motives.

Insurance plans and geography conspired to make me switch psychiatrists. Two doctors down the line I’m working with someone new, and that in itself is enough to unnerve me. I met my latest doc several weeks ago for our initial appointment, and he spontaneously said he wants to explore whether my diagnosis is truly bipolar or schizoaffective. Although he is doing exactly what I had been asking for, the reality of it hit me like bricks. I tumbled into my old rut of imagining a catastrophe, foreseeing that my partner will dump me and I’ll end up homeless.

When I was trained as a certified peer specialist in 2004, the head trainer, Ike Powell of Appalachian Consulting Group, taught my class that “onset of illness” was the first of five stages in the process of recovery relevant to peer support. At a continuing education refresher in 2007, Ike had revised his curriculum. “Impact of diagnosis” is now stage one. He teaches that it’s the “disabling power of a psychiatric diagnosis” that peer support works to dispel.

Well, I took my own medicine by seeking support from several others in recovery. Then I began to see myself in a new way with a mood of better cheer. This past weekend, I was hanging out in my favorite chat room, where I enjoy debating religious and political controversies. Someone tossed a gratuitous insult into the fray, using the label “schizo.” “Hey, no bashing schizos,” I replied. “I work with them, I am friends with them, and maybe I am one myself.”

Within seconds, another participant typed, “Maybe you are hard to diagnose. It took them three years to diagnose me accurately with schizoaffective disorder.” He followed up later by explaining that his mental illness isn’t all bad “because I get to see and hear things other people have to pay a lot of money for.”

Walk a dog through a neighborhood and you will discover a lot of dogs. Call yourself schizo, and you meet other people living on the schizophrenia spectrum.

The main productive points of publicly identifying myself as someone living with mental illness are to establish rapport with peers who have it and dissipate stigma among those who don’t. For those who choose to do this and ride out what happens as a result, life can be full of meaning where there was only chaotic darkness before. That has been my experience.

But there are countless other ways to create meaning and purpose in a life with psychosis. That message came through when I spoke with a man named David last year. He was responding to my invitation for first-person stories of how to live well with schizophrenia. “Don’t tell people you have schizophrenia” was David’s first piece of advice.

He was diagnosed in 1989, began taking antipsychotics, and basically sat on the couch to stagnate. He told me that it took him years to make progress slowly after that. What helped him most, he said, were a supportive family, exercise, prayer, music, writing, and “being willing to believe that it could be different.”

In 1998, he started listening to personal development tapes while he took five-mile walks. He stopped eating junk food and drinking sodas. As time passed, he got involved in Schizophrenics Anonymous, and even went to a conference organized by the group. When I last spoke to him, he was keeping busy with writing plays and romantic dating. He told me it was hard to take risks and try new things like this, but he said he put things in perspective by thinking, “If I’ve been contemplating suicide, then I can take some big risks to stay alive. Now this is my life’s purpose, to recover from this. It is an adventure.”

The adventure of meeting tomorrow’s challenge beckons me. I plan to go to a mental health advocacy summit meeting, where I will represent a consumer perspective. But first, I need to follow my recovery routine and get a good night’s sleep.

Gareth Fenley is a Certified Peer Specialist within the Department of Psychiatry and Health Behavior, Medical College of Georgia. Ms. Fenley also serves as President of the National Alliance on Mental Illness (NAMI) affiliate based in Augusta, Georgia. She can be reached at gfenley@mcg.edu.

Citation: Fenley, G. (2009) Checking realities: Consumer perspectives; The impact of diagnosis. Clinical Schizophrenia and Related Psychoses, 2, 337-338.

By Gareth Fenley. Published in 2008.

Medication compliance is a goal of psychiatric treatment, according to many psychiatrists. It seems obvious to a lot of people that this makes sense. Family members, especially, who see a loved one drowning in a sea of unseen troubles tend to grab quickly onto this life preserver. It is the easy answer.

It is also an uncommonly achieved goal, as all of us who have gained experience in this field know, whether we are paying to receive the prescriptions (as I do), writing them, or witnessing the process in our families, cajoling and sometimes despairing. Perhaps this problem is so intractable because medication compliance is seldom a goal shared by the patient, at least at the outset.

This was clearly demonstrated at a psychiatric research presentation I attended. A study coordinator introduced one of her subjects who had agreed to speak, glowingly announcing: “He is 100 percent medication compliant.” The man described an impressive story of salvaging a wrecked life. Thinking that I, too, would feel proud if I had contributed to his apparent success, I wondered how he saw it.

“What are your goals?” I asked.

He answered immediately and emphatically: “To be off medication. To be normal. To be free.”

I wondered how these goals could be reconciled with the study’s worldview. In terms of his own targets, he seemed completely off the mark. He was standing in an office building in bare feet.

I know too well from my own personal experiences that psychiatric medications can help tremendously with the effort to build what seems like a normal life or can actually undermine it, depending on how their powerful effects impact body, mind and spirit. It’s most discouraging when medications help and hurt at the same time. The family and doctor see improvements, but the patient can’t tolerate the situation, and quits the meds.

In truth, medication compliance should never be more than an objective, not a goal in itself. Medication is one of many tools in the kit that we can all use to move along the lifelong path of recovery in psychotic disorders. By framing treatment in this way, I can direct my own recovery, even if — especially if — I hope to go off meds in the future, while guided by my doctor’s best clinical judgment.

Of all the entries in the journals I kept after my psychiatric hospital release in 1997, the one that is most poignant for me is dated July 22nd. That evening, I wrote about how it was a “sad choice” to be “voluntarily restrained from that lovely madness.”

Years have gone by, and I have answered the question I had not settled for myself in 1997: Do I have a mental illness? Six months passed, then nine months, then a year, and now there has been more than a decade since what my first psychiatrist called “putting my brain in a blender.” Today I can answer that yes, I do have a mental illness. I know I really do. I’ve been convinced completely without a doubt that it involves brain chemistry out of whack. My troubles are not limited to that, and I can’t just fix everything with pills — certainly not — but I need the pills for the chemical side of it.

Also, I have finally reconciled myself to the persistent psychotic aspect of my illness, and I am resigned to taking antipsychotics indefinitely. I’ve been trying to get off them since I first realized what they were, and that strategy does not work for me. Actually feeling that I want to take them is a fairly new development, but even that motivation ebbs from time to time.

Let’s be frank. The bottom line is, despite how cheerful I can be about it, I hate taking meds. I’m in a sour mood about them right now. I hate the expense, the hassle, the intermittent humiliation. No matter how much I grow used to the routines involved, it seems there’s always something upsetting the apple cart. Most of all, I hate what they mean, these pills they call “crazy meds” — the dependency they imply and the stigma they ensnare. To agree to take them is a concession to weakness, I sometimes think when I’m in a rebellious frame of mind. All this needs to be accounted for in my dynamic relationship with my prescriber if I’m to continue to follow through on the plan set in each appointment.

As my colleague, Alex Mabe, notes in our collaborative presentations for Project GREAT (Georgia Recovery-Based Educational Approach to Treatment), Patricia Deegan and Robert Drake have argued that the notion of compliance is rooted in a paternalistic tradition of medicine. This old-fashioned model is at odds with the newer principles of person-centered care and evidence-based medicine. Deegan and Drake suggest that the compliance model, with its emphasis on medical authority, is too simplistic to address what is really going on in my thoughts and actions. According to these authors, I go through active, complex decision-making processes to discover what I personally find to be optimal use of medications in my quest to achieve recovery.

Recovery is the real goal, and it’s one I am invited to shape in defining for myself. I find this alternative perspective refreshing and empowering.

Inherent in the recovery model of mental healthcare is a move away from compliance (or adherence, a term switched in to make the same concept seem less coercive) and toward shared decision making. As Deegan and Drake explain, this entails a process of collaboration to arrive at a mutually acceptable plan for moving forward in the treatment process. Shared decision making involves two experts: one who knows the scientific literature and has clinical experience, and one who knows his or her own preferences and subjective experiences.

In other words, when I am in the patient role, I am the expert on myself. I work with a mental health professional as my consultant whose role is not to enforce or ensure compliance, but rather to teach me and guide me in choices. My doctor makes recommendations, and I make the final decisions. That’s what is meant by the shift from compliance to alliance. It’s a change of paradigm, not a euphemistic change of words.

In order for psychiatric medications to be used more effectively on a mass basis, what this society really needs is a movement that will show them to be agents of freedom rather than zombiehood. We need to take a cue from people who are no longer “confined to wheelchairs” but who are now described as using wheelchairs for mobility. Pharmaceutical companies may run endless ads with sunny landscapes and hopping happy faces, but it’s the pharmaceutical customers, people like me and Pat Deegan, who must “come out of the closet” publicly in ever increasing numbers to change what it means to use psychiatric medication.

Gareth Fenley is a Certified Peer Specialist within the Department of Psychiatry and Health Behavior, Medical College of Georgia. Ms. Fenley also serves as President of the National Alliance on Mental Illness (NAMI) affiliate based in Augusta, Georgia. She can be reached at gfenley@mcg.edu.

Reference: Deegan PE, Drake RE. Shared decision making and medication management in the recovery process. Psychiatr Serv 2006;57(11):1636- 1639.

Citation: Fenley, G. (2008) Checking realities: Consumer perspectives; Compliance and recovery. Clinical Schizophrenia and Related Psychoses, 2, 262-263.

By Gareth Fenley. Published in 2008.

Tall, dark, and bald, dressed in a white T-shirt and patched jeans, Charles Willis scowls at the box of matches in his hand. They remind him of the time he burned a family’s house down when he was trying to cook dinner. “I’m leaving you behind,” he says, and sets the box down on stage.

From the table heaped with objects before him, Willis picks up a small bottle and announces that he hates taking medication. Then he faces the audience with a wide grin and says, “But I must admit, I feel better since I’ve been taking it than I ever have before, so I’ll take you along.” He places the bottle in an orange knapsack. Willis also puts in a tape player that repeats messages accusing him of being bad, just to remind himself of where heís been. He discards his cigarettes triumphantly, saying he might as well quit them just like the alcohol and crack.

After completing a series of choices about what to take home from rehab, Willis exits with his bag. The audience applauds enthusiastically.

The Story of Recovery: A Play was created in suburban Atlanta this spring by people who have been admitted to psychiatric facilities and released, whether once or many times. One by one, the actors stepped onto a community college stage set with props from their own personal collections. Speaking in monologues, they made their own selections of what to leave behind and what to put in a suitcase or travel bag for use in the future. They adopted new identities as Certified Peer Specialists whose mission is to carry the message of mental health recovery to others.

The play was inspired by The Lives They Left Behind: Suitcases from a State Hospital Attic. The 2008 book and its website at www.suitcaseexhibit.org present an exhibition that offers a self-described “moving — and devastating — group portrait of 20th century American psychiatric care.” The book focuses on the first half of the century, when it was common to be institutionalized for decades until one’s body was buried on hospital grounds. The exhibit’s curators reconstructed the lives of selected former residents of New York’s Willard State Hospital. The politically charged interpretation that suffuses the project is based on interviews and artifacts. The most evocative items are the contents of suitcases stored in a forgotten attic.

The last names of the profiled New Yorkers could not be used due to privacy laws. The actors in Georgia’s autobiographical play advertised it to the public using their full names: Charles Willis, Dionne Tillis, and Carol Coussons de Reyes. They stated in a flyer: “In ages past, we lost our lives. With one admission to the hospital, we were never heard from again …. Today, we are more than the lives we left behind. We are moving forward and walking into our dreams!”

Hospitalization forged a perspective on mental illness for these playwrights, and for me as well. Our own original, profoundly eccentric and isolating experiences within our minds became the collective reality of being classified and treated in locked buildings. And we lived to walk out.

I had seen private therapists for many years and was thoroughly accustomed to quiet waiting rooms where names are not exchanged. But on that chaotic night in the emergency room when a doctor pronounced that I would be committed and transported to a mental hospital, I was so completely unwilling to accept my vivid image of being warehoused forever on some ward that I attempted to end my life for the first time.

Today I, too, am a Certified Peer Specialist. I carry every day a reminder of the program that started me walking in the direction of this dream, a yellow plastic key holder I was given by staff at a halfway house. I work at the Medical College of Georgia in a job funded by the state’s Division of Consumer Relations and Recovery. I have learned to call myself a “consumer” in the sense that I receive psychiatric services.

As a formally recognized and paid job, the peer specialist role is new. Georgia, the first state to provide Medicaid-reimbursable mental health services that are specifically designated as peer-to-peer, certified its first class of training graduates in 2001. The National Association of Peer Specialists formed in 2004, and its upcoming national conference in Philadelphia will be just the second ever.

Nevertheless, an empowerment perspective on mental health has been strengthening for many years in the United States. Our psychiatric hospitals have long been shaped not only by crusaders and reformers within the mental health professions, journalism, and philanthropy, but also by people who were patients. In 1908, Clifford Beers published his autobiographical A Mind That Found Itself and founded the Connecticut Society for Mental Hygiene, ancestor of todayís Mental Health America. In 1956, the organization melted down discarded chains and shackles from asylums into a 300-pound bell that “serves as a powerful reminder that the invisible chains of misunderstanding and discrimination continue to bind people with mental illnesses,” according to its website today.

With mass deinstitutionalization in the 1970s, groups of former patients (some of whom called themselves ex-inmates, others survivors, still others consumers or clients if they voluntarily stayed in treatment) formed the Insane Liberation Front, the Mental Patients Liberation Alliance, and other groups that were framed in the political terms of responding to oppressive institutions. This wave of grassroots activism became known as the C/S/X (consumer/survivor/expatient) movement. Simultaneously, parents of patients formed their own groups around the country, which coalesced into the National Alliance for the Mentally Ill (NAMI) at a national meeting in 1979 in Madison, Wisconsin.

Positioned as the most conservative of the prominent social advocacy groups in mental health, NAMI quickly gained clout through alliances with influential professionals, politicians and pharmaceutical companies. NAMI endorsed system reforms that embraced a greater role for involuntary treatment in the community, which was anathema to most on the C/S/X side. Later, NAMI shifted its focus to “consumer inclusion” and changed its name to the subtly but meaningfully different National Alliance on Mental Illness.

Meanwhile, the loose and shifting coalitions among the most radical groups with a human rights analysis evolved into MindFreedom International, which today claims to unite 100 C/S/X organizations. Two more of the many grassroots organizations in the middle of the spectrum are the diagnosis-specific Schizophrenics Anonymous and the Depression and Bipolar Support Alliance, which offer support groups around the country.

This is just a sampling of the legacy of consumer activism being inherited by young people being diagnosed today. Abetted by their energy, collective projects organized by self-identified consumers and survivors are now emerging at an accelerated pace. We are aided by the trend toward recovery in mental health practice, by government and industry funding, and by a social trend toward celebrating openness about stigmatized conditions that is seen in everything from homosexuality to cancer.

One of the primary themes heard from leaders among people who have mental illness is that we are the experts on our own experiences. Yet when psychosis started to sneak in and out of my life, accompanied by the mood fluctuations that had always flowed through me, I did not feel like an expert. Derailed thoughts were terrifying and confusing. Who would be my confidante, my guide? My parents were believers in psychotherapy, and I made my way in that direction voluntarily, at least as long as I could remain at liberty. My efforts were conducted privately and individually. I had no sense of belonging to any group with respect to what seemed to me an aberrant style of feeling and thinking.

Eventually, during one particularly severe depression, I told a therapist that I was ready to “give up” and try medication. She didnít believe in pills, and told me I needed more therapy. That wasnít helping me, so I drifted out of her care and spent a lot of time in bed. Eventually, I dragged myself up by getting a job that challenged me to think and adhere to a rigid hour-by- hour schedule.

In the context of mental health, I thought of myself as a client back then in the 1990s, before my hospital experience. The name consumer was and still is used primarily within the public mental health system where, ironically, there is the most coercion and the least ability to shop among products and services. Consumerism applies more and more today, though, as competition grows in economic and intellectual markets for the attention of people who were once routinely surrendered to the care of the state.

Pharmaceuticals are now sold with increasing assertiveness directly to the people who are going to use them, including drugs available only by prescription. While many medical professionals are beginning to shun the most overt drug-peddling gimmickry, advocacy groups racing to meet consumer demand for “independent” information and support are gobbling up funding from the drug makers. Medications have websites fully stocked with goodies such as branded printable wallet cards and symptom diaries.

Alternatively, the Internet can be a gathering spot for people seeking antiestablishment advice. Shoppers can browse MindFreedom’s “Mad Market” of books explaining how to get off psychiatric medications. They can watch videos of Mad Pride events modeled after Gay Pride. People seeking answers and support can easily join electronic lists on which members exchange and generate unconventional views about the origins of voices or conspiracies. Online users cluster in chat rooms, some moderated with various restrictions, and others where anything goes.

When people who live with severe mental illness mix together, whether virtually or physically, it becomes clear that rapid changes in technology, social attitudes and medical practice have caused tormenting discontinuities. The fight for attention, heart and soul to prevent or encourage madness is increasingly focused toward younger and younger people. Kids are now growing up on antipsychotics for the first time in history. What will happen when they turn eighteen?

Some teach at Alternatives, the annual conference organized by the federally funded National Empowerment Center. Alternatives has a call for proposals encouraging youth to present workshops, resulting in titles such as “Righteous Anger: Young, Drugged, and Locked Up; Recovered to Tell the Story.” MindFreedom is planning a youth project to network among kids with that kind of story. The Hearing Voices movement, which is predominantly based in Britain, Australia and New Zealand so far, hopes to take root in North America with support groups that allow the individual to draw his or her own conclusions about the nature of voices.

Some college students major in the new interdisciplinary field of Disability Studies, which applies radical criticism to the medical model. The field asserts that disability is a socially assigned role, not a psychological or physical outcome. People with disabilities in this field see themselves as a legitimately entitled minority group whose bodies and minds are a resource that has been exploited by oppressive doctors.

On the other hand, some who are friendly to psychiatry organize NAMI groups on campus to offer education, support and advocacy. Founded by the aging parents of adults, NAMI today has set a strategic goal to become the nation’s premier consumer organization. It is launching major campaigns to bring teenagers and parents of younger children into its fold. The national board of directors supports striking “eradication of mental illnesses” out of NAMI’s mission statement and replacing it with language embracing ìrecovery, resiliency and supportî to yield a “full and meaningful life.” Some NAMI literature has shifted away from describing mental illness as a horrid nightmare into these uplifting words, found in the 2008 national convention program: “Learn about mental illness from those with the lived experience, and find inspiration in the sharing of common challenges and successes.”

In a cultural and countercultural soup of influences, young people sample different worldviews of mental illness, post about their experiences in confessional or satirical blogs and homemade videos, and watch television. A lot of television. That’s one thing that unites the generations among people with severe mental illness. Of course, average Americans guzzle TV too, and enterprising marketers capitalize on it.

It seems that mental illness is on every channel these days. Celebrities are disclosing their psychiatric diagnoses with increasing frequency. The “What a Difference a Friend Makes” Ad Council campaign tells young people that recovery is where itís at for mental illness, and stigma is uncool. What’s next? “Lunatic Eye for the Normal Guy”?

Maybe the answer can be found on MTV, which has fallen far behind YouTube as the cutting edge of media these days, but is still known for youth appeal. The network partnered with NAMI to air a documentary in May called “True Life: I Have Schizophrenia.”

The show profiles three young people with psychotic disorders who are shown over several months interacting with their parents, alone, with friends, and in support groups. Amber, a college student, pushes herself to achieve with the help of medication and gives a speech about schizophrenia. Josh, a sometimes volatile laborer and drifter, refuses medication, smokes a lot of marijuana, and listens to animals talking. Ben is the least active; his main activities are smoking cigarettes, taking fifteen pills a day, sleeping, and watching television.

In one agitated sequence, Josh asks the camera whether it is society that has the disability, not himself. For her part, Amber says that maybe her “new normal” can be better than the old normal. They both seem to be agreeing that their conditions are here to stay and others around them have the responsibility of accommodating them in the community.

For me, recovery means daring to take and encourage risks. Recovery takes us all outside our comfort zones. This is a revolutionary change from a paternalistic model of treatment in which the systemís goal is to set limits, up to and including lifetime confinement, that minimize risk in my life. I don’t want to minimize risk. I want to optimize it. I want choice and responsibility, instead of being sheltered by authorities, away from “false hopes” that could lead to failures.

No matter how much evidence we gather that says tigers live longer and more peacefully in the zoo, I don’t think we should put all the tigers in the zoo. Not for me is life a journey to the grave with the intention of dying at a “ripe old age.” I would rather use up or wear out my gifts, including my ability to reflect upon my own suffering, on the journey of recovery.

Gareth Fenley is a Certified Peer Specialist within the Department of Psychiatry and Health Behavior, Medical College of Georgia. Ms. Fenley also serves as President of the National Alliance on Mental Illness (NAMI) affiliate based in Augusta, Georgia. She can be reached at gfenley@mcg.edu.

Citation: Fenley, G. (2008) Checking realities: Consumer perspectives; Embarking into recovery. Clinical Schizophrenia and Related Psychoses, 2, 178-181.

Couldn’t sleep. Woke up at 5:30 am dreaming of blogging. I’ve been very active on Facebook while neglecting Amazon Pollyanna. As my Facebook friends know, my apartment has been invaded by a swarm of ladybugs. The swarm has diminished, but there is still a lot of crawling activity on the upper walls and ceiling. I also keep finding the critters in my dishes. Those little bugs have super grippy feet.

My friend and ex-girlfriend Monica Helms has been bugging me to get onto Facebook and today I’ve jumped into it at last. You can find me by looking for Gareth Fenley. I’m the only Gareth Fenley.

Went to see the new movie with J. and two of our neighbors who live just across the street. According to Wikipedia, this is the first major motion picture based on a blog. Julie Powell is a great blogger with her unrelenting individual voice, honesty, and dogged persistence.

I haven’t been blogging at all this year. I’ve been working, working, working and commuting, commuting, commuting and traveling, traveling, traveling! I will be spending the last two weeks of August in Philadelphia and Phoenix at conferences.

I appeared last night in a local CBS TV newscast for WRDW, Channel 12 in Augusta, Georgia. I wasn’t thrilled with how the piece turned out. The reporter conflated three different subjects in a way that created a bit of a mish-mash.

I am in the mode of counting my blessings and appreciating all the good things in my life, which very much includes people who read my writings.  I appreciate you. Thank you.

I am very happy to be home this cold Jan. 17 Saturday morning, typing on my Macintosh laptop computer in the living room as the sun rises.  From Jan. 9 to Jan. 14, I was in a locked psychiatric unit where I voluntarily checked myself in for evaluation and meds adjustment.  It was a good stay. Once my doctor hit on the right medication, it was (as one of the other patients remarked to me the day of my discharge) “like flipping a light switch.”

I had been really dragged down by sleepiness from last fall into this winter and intermittent disturbing psychotic thoughts. I am now alert and free of disordered thoughts all day each day.  This has been going on for the past four days.

As they say, we take it one day at a time.  I don’t take for granted that things will always continue to go well, or even that they will be well next week or tomorrow.  I know and appreciate that they are well now.

Of all the many tools that have helped me turn this latest corner in my Recovery, there are a couple of keys I would like to share with you. The first is journaling.  I have been keeping diaries on and off since I was 14 years old.  I am now 47.  Journaling for me is an excellent tool for self-awareness.  I am able to privately express my often elusive and sometimes deranged thoughts. Then I can check and reflect on them later, when I’m in a thoughtful and sometimes newly rational state. This is very helpful.

In particular, the week before I admitted myself to the hospital this time, I was writing routinely in my journal when I jotted down some thoughts about being the Messiah.  Then I continued to write about real things.  It was all just part of one continuous flow of thoughts that my mind was taking as normal and real.  When I re-read what I wrote, I actually recognized that there was soemthing “not right” about this.  I then started writing again and I wrote that if I am the Messiah and I go to start a new religion, I will have to end my relationship with my life partner and be single, and I would not want to do that because of how much I love her.

It was the thought of loss of family love — not any direct recognition that I’m not the Messiah — that helped me put on the brakes against moving out of touch with reality-based routines.  Over the next few days I was able to process more thinking about this and get to a point where I made the decision to admit myself.

This reminds me of (a) the power of “nipping it in the bud” before things fall apart, and (b) the power of relationships to steady us in our lives.

By the way, I now know that I’m not the Messiah.  No way.

Special thanks for the thoughts and prayers of those who care about me and their loved ones with unconditional love, no matter how confusing our behavior may appear.

is the name of a new literary magazine that I literally dreamed up this morning. I don’t know what “Clover blend” means, though. I only know that I read the cover of the zine in my dream and the b is set in lower case.

I was dreaming about working at CNN again. I now often have CNN dreams when I am thinking about work a lot. I used to have dreams that I am back in high school to refer to working, but that’s not so usual these days.

I’ve been extremely inactive in my blogging activity. I’ve been spending a lot of time on IRC. I’d like to start old-fashioned pen and paper journaling again.

I have a couple of new essays out in print. The titles are “Embarking into Recovery” and “Compliance and Recovery.” They’re about recovery, yeah, recovery in severe mental illness. If somebody wants to read ‘em I’m pretty sure they can be found with Google. I was at a conference yesterday and met a psychiatrist who had read one of them. It always surprises and satisfies me to meet a reader of mine.

I have moved from Georgia to the beautiful state of South Carolina. I live now in the capital city, Columbia, in the Eau Claire neighborhood north of downtown. I am very happy and blessed. You’ve seen the photos of me together with my partner! She is a mathematician, computer programmer, and technical illlustrator. Also she has a great sense of humor. We met via Match.com on the internet last fall and now we’re living together.

My life routine is as follows: on the average weekday, I get up at 5:30 a.m. and get on the road by a little after six. Although I moved to South Carolina, I am keeping my job in Georgia. I head east on Interstate 20 to drive a little more than one hour in to work. It is a relaxing drive without much traffic. I listen to the radio in all types of formats including different music stations and public radio. There is excellent coverage by NPR along the route via both South Carolina and Georgia stations.

At work, my office is in a historic building called the Stoney Building, which is the headquarters and outpatient cliinic for the Medical College of Georgia (MCG) psychiatry department. My department trains not only psychiatrists, but also psychologists. I help with the training of medical students, residents, and even the faculty in the Recovery model of mental health care. My job title is Certified Peer Specialist and the program I work with is called Project GREAT (Georgia Recovery-Based Educational Approach to Treatment).

I spend the day doing a variety of things, seeing people in groups and individually who are coming to the clinic and the hospital unit for mental health care, talking to the doctors and therapists, teaching, training and writing. I often go on trips either around Georgia or even out of state. This month I will be traveling to Philadelphia for a conference (the National Association of Peer Specialists’ second convention). That will be my first visit to Philly and I am hoping to see the Liberty Bell.

After 5 p.m. I often have things to do around Augusta, such as meetings for MCG or for NAMI Augusta (the local affiliate of the National Alliance on Mental Illness). I have been elected president of that affiliate and I put a lot of energy into it. Our most recent big effort with NAMI was a “Fun(d)-raiser” night at the GreenJackets minor league ball park. We had a great time. Last week, I spoke at a breakfast for Minority Mental Health Month with the Augusta mayor, a congressman and some other local notables.

By the time I get home to Columbia on weekdays I don’t usually have a huge amount of time left in the day. J and I have our greatest amount of quality time together on the weekends. We work around the house and garden to fix up things. J has (what is to me) a huge old house and yard. I planted squashes and tomatoes in a new garden that we made together. The squashes didn’t make it long into the season, but tomatoes are still going. J’s sunflowers are big and tall. She created a really wonderful rock garden and another garden she calls the sun garden where we put coneflowers, calla lillies and overwintering glads.

J’s co-workers, friends, and neighbors have welcomed me in the most wonderful way. We enjoy doing various fun things together in South Carolina such as backyard barbecuing, Fourth of July driveway fireworks (they are legal here), and sharing food and good times. One day we drove up for a trip with the neighbors to Charlotte, North Carolina to go to the Apple Store. Both J and myself are Apple fans. I bought some new Macintosh software. J gave me an iPod later.

Our next door neighbors introduced me to a new hobby: amateur radio! I studied for my test and attained the entry level license of Technician. It’s a lot of fun.

J and I went on a couple of trips together. We had a terrific vacation in Asheville, North Carolina, touring the Biltmore mansion, “America’s largest home.” We stayed at a bed and breakfast called Bed of Roses. It was very nice and romantic. Later we made a trip up to Illinois to visit with our relatives. A good time was had by all.

Because we already visited Illlinois this year, it looks like the year end holidays will be spent in the South for 2008. Next year though, I want to get up to Illinois for a high school class reunion that is starting to be organized by David Welch. Wow, it’s been 30 years into adulthood for the Class of ’79.

My undergraduate alma mater, Oberlin College, named me a class agent, and I also continue as an Admissions Rep. I haven’t done too much with Oberlin lately other than that, and don’t know when I will get up there to visit next in northern Ohio.

My newest “gig” has been doing some local reporting for Q-Notes, the gay newspaper of the Carolinas. I have been really having a great time working with the young editor, Matt Comer. Together we led coverage on a story that hit international news for about a week, about an advertisement for South Carolina tourism calling the state “so gay” that was placed in London during Pride week.

J is excited about taking me on a Caribbean cruise next year. I have warmed up to this idea very slowly but now I think I am ready to actually enjoy myself on a ship.

I AM HAPPY!!!!!!!!!

This letter was written in the non-Microsoft Pages word processor on a Macintosh iBook which was also playing music using iTunes and a Bose Wave Radio. what’s on my iBook and iPod? Barenaked Ladies… Carole King…Ferron (LOTS of Ferron)… Holly Near… Indigo Girls.. Jubilee Christian Center…. Kirk Franklin… Laura Love… Lee Ann Womack… Madonna… Meg Christian… Melissa Etheridge… R.E.M… Tracy Chapman….. and Woody Simmons, the best-ever world-music banjo player….

Hope is that thing inside us that insists, despite all evidence to the contrary, that something better awaits us if we have the courage to reach for it, and to work for it, and to fight for it.

Barack Obama

Click to view full size images.

Here we are at our first Thanksgiving together.

Family of four in Decatur, Georgia.

Here we are. We are happy!

A uniformed cop showed up at a civilian meeting I was regularly attending. I try to get along with everyone, but this cop and I made each other bristle. She wanted her officers to have broader powers to pick up people and take them to a hospital so a doctor could commit them to a mental ward–and not just people sleeping on the streets, but people everywhere, including people in their own bedrooms.

Instinctively, aggressively, I rebel against this encroachment of the state, especially in light of past abuses and currently atrocious conditions in too many psychiatric facilities. But others at the meeting were welcoming the officer, and fairness demanded that I listen to them.

I was a member of the state board of directors of the National Alliance on Mental Illness (NAMI) in Georgia. I resigned from that board to join the board of my local affiliate in Augusta, Georgia. In my NAMI work, I make it a particular mission to represent the interests of a class to which I belong, which NAMI calls “consumers”–people who have severe and persistent mental illnesses. Sometimes it can be difficult for us to get along with NAMI’s best-represented constiuency, family members of others like ourselves.

NAMI Georgia is exploring this issue, and so I renewed my effort to reach out for fresh input on police, criminal justice and involuntary hospitalization matters. I talk to people who have been jailed and involuntarily hospitalized and homeless and psychotic in public, many times, for many years, often in many states. I’ve spent time inside locked institutions also.

I feel uncomfortable advocating on behalf of these people because I would rather let them speak for themselves. The unfortunate thing is that it is rare to find people who are able and willing to speak out publicly and honestly for themselves and their peers who have extensive experience being the subject of these systems. To come out publicly before authorities has unacceptable consequences, you understand.

The people I’ve known and stories I’ve heard and what I’ve seen and read for years is consistent with what I’m hearing now, and I will continue to get more specific feedback on proposals NAMI is considering.

Please understand that it is frustrating to me to have to keep identities and details confidential, because I may seem much less credible, but that is how it must be to protect the people I talk to on a peer level.

I’m hearing that unwanted, involuntary psychiatric hospitalization really is experienced as being just the same as jail.

I’m hearing that people who have been locked up in hospitals and jails who did not want to be there call them both “being locked up”, and they FEEL THE SAME.  And they hate being in there. And they often try to do anything to get out including fake and lie. And they don’t usually benefit.

But sometimes they do.

(On the other hand, many people voluntarily do various things to get into hospitals and jails, choosing what they prefer.  And they are much more likely to benefit. But sometimes they don’t.)

We need lockups in hospitals and jails.  Yes we do.  I don’t want to eliminate them all.  But we need to be completely realistic about what kind of places they are.

You might be interested to hear, as an aside, that in a job I had for an information publisher, we were trained that psychiatric hospitals and jails are so similar in design and construction that they are reported in the same category as “Prisons.”

I’m talking to people who choose or have chosen to be homeless or psychotic or both, who say they know exactly what they are choosing and it is the situation they prefer (less stressful, familiar, feels better than other ways they have tried).

We should all be able to relate to knowingly taking risks in life. The more freedom, the more risk you can take on. We drive on the freeway. Some people choose to be fire fighters or fighter pilots or sports players or police officers.  Some people do really choose to be homeless knowing they could be raped or murdered. Some people also choose to move to neighborhoods full of homeless people and be “urban pioneers.”

Frankly, I think an Atlanta police officer is one of the very last people who should be telling me I should not be free to do things that could get me killed!

It’s no accident that our Vietnam veterans are often among those most comfortable on the streets or at the margins.

If you think we will ever end homelessness, look at all the folklore about bums.

The more time you spend living with mental illness and among people who share some form of it, the more you see that it is a different way of making sense, given what the person has been through and where they are coming from.

If you’ve had BAD experiences with mental health services, you will, more and more, resist and avoid mental health services.   Remember, the consumer judges what felt BAD.

Do I sound like I want to promote or celebrate the most severe forms of mental illness in some kind of glamorizing, romantic way?  NO.

NAMI’s mission statement says that we intend to “eradicate” mental illness. I do not have a mission to “eradicate” mental illness. Why not?  Because I find that far too extreme and dangerous a goal. (Pick up a diagnostic manual of psychiatric disorders some time! Look at how subjective the definitions are. Remember that 20% or more of the population is in there.) I cannot think of any authority I would trust on any continuing basis to run such a project.  It would certainly have to be approached through involuntary eugenics — as it used to be even until the 1970s.  Voluntary eugenics now continues (e.g. selective abortions), whether I approve or not.

In NAMI, I personally do have a mission to help relieve the suffering caused by mental illness and promote recovery and support research to discover more and more new and better ways to treat and prevent it.

Looking at things as a service provider or supporter of the ill person, if you can relate more effectively to people on their own level in their own way, respect them and listen to them and try to offer no threat that causes them to lie to you, you will be more able to guide them and coax them and inspire them into voluntarily making use of the services there are to offer. And you can make the services better.

And you will save money. More people will take more responsibility for initiating and maintaining use of services that will allow them to integrate better with family and WORK. And they will pay more and more of their own way. I’m really, really big on EMPLOYMENT. Often the isolation and impoverishment of the surroundings of a person after diagnosis are worse than the symptoms. I know that personally, I do best when I work at a good job. The solution to poverty is not a steady stream of handouts, it’s to get into the middle class. I’ve gotten to know people in Georgia who have been hospitalized and jailed dozens of times and homeless for years, some addicts or alcoholics and some not, who are WORKING now. 

When I was in graduate school, I got every scientific paper we had in the computer and three libraries, plus a few I got copied from other libraries, studying forced versus voluntary services as a way to improve specific measurable outcomes in mental health. (The opinions of those receiving the services were almost never considered in these studies, by the way. Why not?)  The researchers counted events like rapes and murders and attacks and hospitalizations.  

I found this out: Improving voluntary services is just as effective and costs no more than court ordered services. And the only way to sustain the positive results of the forced services is keep sending police to enforce them.

Which would you choose for yourself?

As a young person in downtown Atlanta put it to me on a Saturday night: “We want a RESPECT REVOLUTION.”

Trying to force people to do things goes against our American foundation of liberty.

I would like to reduce stigma around use of mental services, improve the quality and scope of services, stop the bad things that happen when well intentioned people hurt others through trying to help them in ways that turn out badly, and increase the number of people who actually want to use services appropriately as a tool to get better.

There must be ways to get this done. I believe that if we keep searching and talking we can find our way.

Gareth Fenley

I grew up coached to believe that I could do anything, but until very recently I have never accomplished anything much professionally. I can write beautifully but practically all of the paid work I did was hacking for a paycheck. My resume can be explained by mental illness, random classified ads and love that did not work out. I never expected to live past 30 so I never made any long range plans. My goals in life have been selfish or survival oriented.

I am an intellectual who had a lot of lucky breaks and privileges and always got told I could work no matter how strangely I was behaving. I have worked and paid therapists all my life. Even when I have been uninsured (quite a bit) I have been able to avoid using public mental health. When I needed a psych hospital in 1997 I was very lucky and I had the world’s best health insurance and got sent to a nationally famous place where I got introduced to the recovery movement. The ER guy thought I was uninsured and at first he was going to send me to the state hospital so I could have had a different fate.

Recovery and peer support changed me and I became a better person. I wanted to do something meaningful with my life as a career. I was a middle class professional so I decided to be a therapist.

To become a mental health professional, I decided to be a social worker. I was trained to coerce people although I wrote on my social work school application that I have ethical problems with coercion. I did a lot of work with involuntary clients and assisted with commitments on my internship.

In my first and only social work job, which lasted less than a year, I found myself working with involuntary clients and assigned crisis coverage to calm people down and make judgments about whom to commit. I found myself on a career track that would have led to a test after three years to become a Licensed Clinical Social Worker (LCSW) who can sign commitment papers myself. I was legally required to report certain things clients say to authorities for investigation (e.g. child abuse).

My ethics code as a mental health professional stated that I must avoid “dual relationships” with clients – which means that if you are my client, I have one clear relationship with you and that’s it. I help you as your social worker. You are not my friend and you don’t help me in a support group. We are not peers because I am in a role of authority and service to you. There is no mutuality in our twosome.

I could effectively use self-disclosure as a social worker and that is a long established tradition with loads published about it. I could tell clients I have a mental illness and talk about experiences in my life. For a mental health professional, that is called self-disclosure. On my internship I heard a professional show how to do it by talking about his own experience of feeling suicidal in group therapy as a way to be effective with our clients in an outpatient program, several of whom were suicidal. Some therapists use this technique a little, some use it a lot, some do not use it at all. I have heard of therapists who talk on and on about themselves in a way that is not therapeutic and they are simply bad therapists. I have heard of various therapists in private practice who disclose to clients that they have a mental illness, usually after the relationship is well established, and they rarely talk about their experiences in depth as we do in peer support.

What is different about the Certified Peer Specialist training is the ethical requirement for self-disclosure as a way of practicing with all clients, all the time, as a consumer professional, which is a new idea in mental health, and there are not exactly abundant role models yet. While trying to practice this way in 2005, I kept keep finding people who self-disclose selectively in clinical work, or consumers who have graduated from services and are now working in the system without professional licenses, or mental health professionals who are doing something besides clinical work. Where was someone who thinks that what I was trying to do is a good idea and they are also doing it for a living?

Many mental health professionals avoid dual roles like the plague, but I don’t. I come from a feminist ethics perspective that recognizes the fact that many practitioners from certain communities find dual roles unavoidable if we also are advocates for the cause of our clients in the world. We are going to encounter our own clients as peers in our advocacy work. For social workers, advocacy is an ethical mandate. Not every social worker is willing to accept a client in a peer role but I was, while I practiced social work, within a limited context. I had a book written for professionals that explores how to handle dual roles in today’s world and I have quite a bit of experience presenting myself as a social worker with mental illness in peer support and advocacy communities. I have served on a mental health association board with consumers and professionals who were in dual roles and watched them handle it. I have found myself in dual roles with my own psychiatrist and therapist. They are my peers as well as my providers and they appear in my professional world.

The problem of dual roles and the issue of how clients relate to mental health professionals who identify as consumers is huge. Consumer professionals are very rare despite the tradition of therapeutic self-dislosure. There is a perception that a Certified Peer Specialist cannot function effectively as a professional. Staff believe that consumers need to see professionals in an authority role and they won’t accept the authority of a CPS, or they will be confused by an MHP CPS. A consumer asked me during my social work orientation on the job if I was staff — I don’t know what this means; I had been sitting in on sessions being bored, mostly, and socializing in the hall. I think it is obvious I am staff when I am working. I did have an experience in which I intervened with authority and lost a friend who no longer considered me a peer. It was unfortunate and sad. I hate losing friends.

While I am an emotionally passionate person, I keep a certain self-protective distance from most people. When I was a social worker I emphasized keeping emotional distance from clients. Ideally I respected them all and gave everyone equal treatment regardless of their attitudes toward me. Clients have favorite workers but workers must beware of having favorite clients. I have been personally attacked by involuntary clients in their own creative ways. I had a client who said he loved me and one who called me Kendra and some who didn’t know who I am and one who ran away when I came near. And a bunch more people.

I MET A PERFECT PSYCHIATRIC PATIENT at a research conference. As she introduced one of her star subjects, the study coordinator glowingly announced, “He is 100% medication compliant.” The man described an impressive story of salvaging a wrecked life. Thinking I, too, would feel proud if I had contributed to his apparent success, I wondered how he saw it.

“What are your goals?” I asked.

He answered immediately and emphatically.

“To be off medication. To be normal. To be free.”

So in terms of his own targets as he saw it, he had reached a point of 100% off the mark. I wondered how his goals could be reconciled with the worldview of his doctors. I also noticed he was standing in an office builidng in bare feet, which made him more free than normal.

If he wished to “pass,” as I can when I am doing well, he would have some work to do. I know too well from my own personal experiences of the past ten years that psych meds can help tremendously with that effort or undermine it, depending on how their powerful effects impact body, mind and spirit. It’s most discouraging when they help and hurt at the same time. The family and physician see improvements, but the patient finds life intolerable, quits meds cold turkey, and ends up in a hospital–or, even worse from the perspective of my libertarian soul, becomes a zombie by staying on the meds without getting them changed.

Here’s a recent article that mentions me.

Profile of Dr. Buckley

I’ve been a spectacular failure at keeping up this blog on anything near a daily or even weekly basis, but at least I do make an occasional appearance.

I recently found myself slogging down into the land of the cloudy-headed crank, far enough down that I missed some work. Time to check in with Dr. Banov. As always he gave me the right advice and I am back to smiling and checking in at 8:00. The magic adjustment this month consisted of one very small pale pink pill per evening, sold under the trade name of Abilify, that retails for more than $10 a hit. That’s in the realm of the illegal mood-enhancing substance, but this I get by prescription and insurance co-payment.

My personality is now a lovely blend of the natural me, a mood stabilizer to flatten out the wild swings, an antidepressant to give extra punch to the mood stabilizer on the low-fighting side, and a couple of selected antipsychotics to keep my thoughts within the normal range and just generally keep me all-around socially acceptable. THEY WORK!