Surviving Timberlawn

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It’s been a long time since I’ve posted. I’ve been neglecting my blog because I’ve been struggling with depression, which just sucks the energy out of you.  My beloved dog, Julius, died last October, and I’ve been simply devastated.  One thing that has been steady that I’ve been working on is developing a documentary. I’m not quite sure how I’ve managed this, honestly. Just put one foot in front of the other. We’ve been in pre-production now since I last wrote.  I formed a production company, Thornton Square Productions.  Sound familiar?   Like the name of this blog, it’s named after the 1940’s classical psychological thriller, “Gaslight,” that tells the story of a woman whose husband tries to convince her she’s lost her mind.  The setting for much of the movie is the fictitious address, “No. 9 Thornton Square,” in London.  I’ve hired 2 wonderful and talented producers to work with me on this project.  The documentary is very personal and is centered around my own story of being held against my will in a psychiatric hospital in Dallas when I was in my 20’s. I’ve mentioned this in previous posts but am now putting myself out there. Gulp! The film will be a collective story of people who have experienced the same abuse.  Right now, we are looking for other survivors who were at the same hospital I was in, Timberlawn Hospital, in the 1980’s and 1990’s, even the 1970’s. If it happened to you, we would love to hear from you.  Or if you know of anyone or have ideas of how we can find survivors, we’d be grateful for your help.

The project launched with a dedicated website (www.survivingtimberlawn.com) and social media channels (Facebookand Twitter), each designed to shed light on the issue and create a safe space for those who experienced or witnessed similar abuse to come forward with their stories.

Here’s a short video about my experience at Timberlawn:

Pat’s Story from Pat Price on Vimeo.

 

Stigma: How Can We Fix It?

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Here is the final installment of my 3 part interview with Dr. Patrick Corrigan, an expert on stigma and mental illness. Stigma might seem off-message to this blog’s main topic, but not really, if you think about it. Erasing stigma is foundational to having a voice if you’ve been misdiagnosed and/or abused by a mental health practitioner or a psychiatric facility. I hope it has been helpful and insightful.

 

 

Stigma and The Media

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Here is the second in a three part interview with Patrick Coorigan, a distinguished professor of psychology at Illinois Institute of Technology and world expert on stigma and mental illness. In this episode, we talk about the media, how it makes stigma worse, what might they do to make it better.

https://youtu.be/9oUUq7GjacE

A Discussion About Stigma Part I

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I recently sat down with Dr. Patrick Corrigan, Psy.D, a distinguished professor of psychology at the Illinois Institute of Technology, to talk about the stigma of mental illness. Pat is a world expert on the subject and has spent decades researching the topic. The interview is in three parts and will be posted over the next three weeks. In this first episode, Pat explains stigma, what it means, how it harms people, why people stigmatize.

Stigma is still a very real problem as Pat so eloquently explains in our casual conversation. It is the first hurdle to tackle when addressing abuse and misdiagnosis. If we can erase stigma it would benefit patients and ex-patients by allowing them to have a voice, to feel less discrimination and less isolated in our world. I hope you will, as I did, learn something from these interviews with Pat.

https://youtu.be/A6CcdbspaOI

There Are No Reunions For People Like Us

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I sat in the Starbucks up in Lake Forest, IL last Sunday, a bit nervous and excited about the woman I was about to meet. Dr. Annita Sawyer, a professor of psychology at Yale, had agreed to take an afternoon break from her writing stint at Ragdale, a nearby artist’s retreat where she is a writer-in-residence, to have a cup of coffee, and talk about a history we had in common. I had spoken with her a few months back about a documentary that I want to produce that is in its infant stages.  I asker her to be in it and she expressed interest.  I had done two residencies at Ragdale, so we had that in common as well.

But this meeting was symbolic of something greater than any of that. We are both survivors of a broken mental health system and have lived to talk about our experiences and become advocates. Meeting someone else in person who had had an experience similar to mine was a big deal.

There are no reunions for people like us.

Tucked in my purse was a copy of Dr. Sawyer’s recently published memoir, “Smoking Cigarettes, Eating Glass” about her battle with mental illness when she was a suicidal teenager in the 1960s living in New York. She was misdiagnosed with schizophrenia, hospitalized and suffered 89 shock treatments. Yup. You read that right. 89 shock treatments. The treatments wiped out over a decade of memory, and buried the trauma that had been the source of her illness. Eventually, with caring doctors and appropriate treatment, she began to recover. She went on to have a family, graduate from Yale, and become a successful therapist, all the while concealing the secret of her past.

But then she decided to get ahold of her old hospital records.  Buried memories came flooding back, nearly breaking her all over again. She felt outraged that her doctors kept prescribing shock treatments even when they doubted their efficacy.

Starbucks was busy so I was glad when a quiet corner table in the back opened up, two leather chairs in front of a small round table where I put my chai latte and waited.

Soon, a petite woman in her early 70s came in looking around at the various tables for me. She looked like her book photo. Small and slender with short grey hair and clear glasses,  Dr. Sawyer looked youthful and spry in her purple fleece jacket with an embroidered flower pin on the lapel, a light purple scarf around her neck, chalk colored jeans, purple print socks tucked into a pair of sneakers, and a book satchel over one shoulder.

“I have to give you a hug,” I said when I  greeted her. She was nice about it. Not everyone wants a stranger to hug them. But when I saw her in person, I felt taken by this brave survivor and her fiercely honest and poignant  book.  And having read her book, I thought as many readers probably do about authors they’ve read, I felt I knew her, which she said herself later in our conversation. (“You know what I eat for breakfast,” she laughed at one point. And I do.)

“This is a real treat,” she said smiling when she put her drink to her lips. I told her I had felt intimidated about meeting her. She said her patients often commented that they think she’s strong and tough despite her petite stature and quiet voice. She asked what I thought about her now that I’d met her,  her eyes bright. I forget now exactly what I said, but I felt comfortable, relaxed. She was warm and approachable. Right there, present.

She asked if I had told anyone else about my experience. Friends, I said, and I’ve written about it. But I realized only later that unlike Annita, who has gone public with her story, shed her secret, I still live with mine for the most part. It’s been scatter shot. I’ve told people consciously and sometimes told others rashly and it didn’t feel right. But that will change today when I publish this post.

We talked for over an hour. I told Dr. Sawyer about my own horrifying experience in Dallas about 30 years ago when I was in my 20s. in 1986. I was misdiagnosed with schizophrenia, admitted myself voluntarily to a hospital where I stayed for 6 months until I accepted my diagnosis. For nearly four years, I was ground through the Texas mental health system, even diagnosed with a brain tumor that I later learned never existed, all culminating in my being held against my will in a famous, once highly-regarded institution, Timberlawn Hospital, that was about to declare bankruptcy. It was then that I realized the system was sicker than its patients.

When I got copies of my medical records—which I could not read for years, because the wall of professional words left me feeling ashamed, angry and helpless—I found over half-dozen diagnoses in my charts. The cluster of doctors involved in or asked to consult on my treatment couldn’t agree on what I suffered from but they never questioned their course of treatment or the most stigmatizing of diagnoses. My own personal history of trauma got buried under a slew of diagnoses and severe treatments that made me simply vanish as a person.

Dr. Sawyer sat perched on the edge of her chair, listening attentively, shaking her head and asking questions from time to time. She talked about giving talks around the country to various organizations and groups about misdiagnosis and the need for professionals to listen, to take care with their patients. And how many people (a lot) came up to her after her talks and whispered to her that they had had a similar experience, and that she was brave for speaking up because they didn’t feel they could.

She said she wanted to normalize mental health problems, which would mean—and she struggled to find the right words—people could speak up about having mental illness, their experiences in the system without being stigmatized. That most people’s experience in life is ups and downs, and she made a long wave with one hand in the air. Her dream is to have a symposium where professionals and others can come together to give voice to and share their experiences. I hope that can happen.

Circling back to my own experience, I shared with her the analogy that’s always come to mind for me when it comes to abuse in the system, and the systemic problems that cycle back in the news on a regular basis. “Unless you hold everyone accountable not just the bottom feeders,” I said. “you’re just clipping the dragon’s toenails. We have to cut the head off the beast.” The chief psychiatrist at Timberlawn was a former president of a psychiatric hospital association when I was there. Could I really expect to submit a complaint to that organization or to the boards and be taken seriously? Too many doctors can hide behind their credentials, Camouflage. Annita’s face lit up. “That’s a wonderful metaphor,” she said. “I see that head as silence.” Power, on one hand, the beast, and the silence from stigma that needs to end.

The time went fast, of course, and she had to go. So much to ask and share and say. “I didn’t blow it?” I asked her, saying I’d so wanted the meeting to be a success, I’d felt a bit overwhelmed about it. She gave a big smile and laughed saying no, I hadn’t blown it. I’m looking forward to continuing my conversation with Annita. And I hope there will be more chances for people like us to gather on-line and in person to talk. More reunions.

The Signifcance of Lime Green

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The ballroom was packed, a speaker at the long podium testing the mike. I’m not a conference goer, with the exception of the occasional writer’s conference. So, it was intimidating to walk into a room full of strangers at the Hyatt Regency on the Embarcadero in San Francisco that first day in mid-February.  I was there for the 7th International Together Against Stigma Conference.(TogetherAgainstStigma.org). 
I’d been invited to attend the conference by Dr. Patrick Corrigan (https://humansciences.iit.edu/faculty/patrick-corrigan),
 a leading researcher in the field of stigma related to mental illness and a distinguished professor of Psychology at Illinois Institute of Technology (IIT) (http://comingoutproudprogram.org).  IMG_1458This was the first time the conference was held in the States. More than 750 researchers, advocates, policymakers and mental health professionals attended.  It is the only international conference focused on eradicating the social stigma of mental illness.

As a person with lived experience, as they say, a survivor of the mental health system, I was hoping to meet others who have had similar experiences as my own. Trying to make a connection. Find a foot hold.

In the hall outside the ballroom, tables were lined up displaying information about various organizations sponsoring the conference and others. I kept seeing lime green: the title of the conference program,  highlighting topics and headers. lime green scarves, lime green buttons, lime green candy, lime green bags, a lot of people wearing lime green accessories, just a lot of lime green. I didn’t realize until later that some of my everyday possessions are lime green—Lime green glasses case, lime green iPhone case, etc.—and this before I had any idea that the color was linked to this particular cause.  (And then there’s the irony of the lime green wall color in the abandoned mental hospital that is the header for this blog!) I was drawn to the color without realizing it although I may be reading too much into it. Still. So, what is, was, the significance of lime green and why that color for this particular movement?  I’d never really thought about it before–colors and how they represent or signify movements. IMG_1460

Of course, green, in general, is the color of renewal, spring, rebirth, of safety, permission. Hope. Social Justice (the Green Movement). But lime green?  According to old-earth.com the principal of lime green is truth. The color is associated with striving to manifest in a positive way situations that have caused a great deal of stress and worry that have been hard if not impossible to surmount. “The meanings of Lime Energy tell us that sometimes we think that we won’t get what we want so we either give up or force issues before others are ready to give.”

When I read that last sentence, getting past the New Agey prose,  I remembered Pat Corrigan saying during one of his conference presentations that often times people with a history in the mental health system think, “Why bother?” (disclosing/telling my story) They either keep silent or spill and both ways of disclosing feel terrible and unsafe. To not live in fear, to feel the freedom and affirmation of being recognized as a fellow human being, to feel empowered, not labeled as different or crazy, this is the hope, the goal of this anti-stigma movement. After all, one in four people will suffer a mental illness in their lifetime. It might be you.

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Forced Incarceration Is A Myth. Says Who?

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**I yanked the first version of this post because I tried to cover a lot of ground, and it just felt overweighted. So, here is the  edited version which I hope will be more easily digestible. More to come in the next post.**

For my birthday, the friends who suggested the photo for the cover of my blog gave me a book called, Forced Into Treatment.  The title made think the book was an argument against forced incarceration,  or people held against their wills in psychiatric hospitals. Great, I thought. Someone has documented this. There’s another voice out in the wilderness!  I didn’t focus on the sub-title, “The Role of Coercion in Clinical Practice”, hopeful, perhaps, I would find some research, no matter how dated, that would back up the devastating impact resulting from forced treatment in general, and the trauma I experienced first-hand in 1989 when I was held against my will at Timberlawn Hospital in Dallas, Texas.

I was wrong. The book, the brain child of the Committee on Government Policy for the Group for the Advancement of Psychiatry, or GAP, published in 1994 by the American Psychiatric Press, is essentially, a tool to impact public policy, speaking to the psychiatric community, legislators and lobbyists. There is no bibliography or any detailed footnotes in the book except for broad citations. So, how representative of reality can it be? The back of the book lists only the other GAP publications and Symposia Reports, along with a section called GAP Committees (25) and Membership.  But it was the Committee on Government Policy that produced this book.  Its stated mission is The Advancement of Psychiatry. Not the Advancement of Mental Health, not the Advancement of Humane Psychiatric Care, and so on. The book covers a number of topics including, “Coercion in Child Psychiatric Treatment,” and “Mandated Therapy in Military Settings.”  But the one that caught my attention was “Coercive Treatment is Reportedly Not Abused.” The paragraph reads in full:

“One factor that is not much addressed in the debate over the need for judicial safeguards is the empirical data on the prevalence of abuse within the system. It is noteworthy that a congressional hearing by the Senate’s Judiciary Committee’s Subcommittee on Constitutional Rights chaired by Senator Sam Ervin, produced no cases of successful railroading (e.g.: forcing an individual into a psychiatric hospital not for his or her best interests but the for the gain of the petitioner).  A field investigation of mental hospitals in six states conducted by the American Bar Association concluded that railroading is a myth (Slovenka 1977). Although clinical and legal safeguards do prevent railroading, as defined above, the involved parties may become so frustrated with the restrictiveness of the system that they ‘finesse the law’ to obtain care that is in the best interest of the patient.”

From my own experience of being held against my will at Timberlawn 25 years ago, the notion that forced incarceration is “a myth” is a lie.  I was a casualty of finessing the law. I wonder how many other people were victims of “the myth?”

 

Water For Anxiety

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I walked to a coffee shop near my office recently. The young barista asked how my day was going so far. Usually I say what most of us say, ‘fine,’ or ‘sick of wearing my winter hat,’ or whatever banality comes to mind. But in my amped-up state I answered her straight up. ” Honestly,” I said. “I’m feeling sort of anxious.”  We talked for a moment then she said earnestly, sweetly. “I’ll pray for you.” And I ordered my coffee.

I walked fast, confidently, back to the office, trying to dissipate that carbonated feeling in my blood and nerves. What makes me despair at times, well, a lot, is my inability to calm myself down, to talk to myself in a way that feels soothing enough to have my sparkling blood be still. Every anxiety-provoking thing hits the same spike on the needle no matter how seemingly smart I’ve become about what’s causing it. You’d think my neck was being measured for the noose.

Back at the Hancock elevators, I smiled at people I would have otherwise passed, kidded a middle-aged stranger on the elevator who was carrying an empty coffee cup up one floor. “Long way to go for a refill,” I said, sounding almost giddy. “I would’ve taken the stairs,” he said laughing, “but I’ve got bad knees.” As the doors closed I said something like, “well, in that case you’re forgiven!” Anxiety is a private torture. But my anxiety can get mouthy. I was experiencing a weird kind of openness, vulnerability.

So what does all this have to do with water?

Like last week, my office today has a view of Lake Michigan. (I don’t have a permanent office yet so I’m a bit of a gypsy here).  When I walked in and saw the water,  I felt calmer. There is something about water. I never feel alone when I am near it. My desk faces the door so I’ve been writing looking out the window, laptop on my thighs, feet up on the air vents. The water is calm with dappled waves. It is overcast. spittles of water on the window come and vanish. Two boats out on the water. I’m looking out over rooftops, mostly modern buildings, mostly commercial though a few have  stacks of empty balconies and a few rooftop gardens, The Navy Pier carousel wheel to the south. A crow sails past the window and disappears.

I could sit here for the rest of the day and just watch the world and the water. I can feel my heart beat slowing down, my head quieting to exhaustion.There’s something about the uninterrupted clouded blue that goes to the horizon. My mind relaxes, meditates on the stillness of things, the solid buildings, the water rippling, a regular beat, just enough to be a good distraction. Like a lot of lonely, essentially motherless kids, nature has always soothed me, been my friend.

Light is trying to break through. The boats have come and gone. I’ll just sit here until I head home in a few hours, looking out the window, and try to remind myself I can feel this calm again.

“Only Connect”–Like It’s That Easy

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I’m back after weeks of distraction; too much snow, too much grey weather, too much time alone, much-needed time away somewhere warm, a sprained foot (I’m ok now), my sick dog (he’s ok now) and other things that sapped any inspiration or motivation I might’ve mustered for a post. I’ve been sitting here in my office in the Hancock Tower, this somewhat sunny afternoon, Spring trying to show up,  and wondering what to write about. What I notice besides the intermittent sounds of honking horns below on Michigan Avenue is the silence. It’s quiet on the floor except for a few people walking down the hallway. muffled voices.  A few people have the doors to their offices open. Most don’t, including me at the moment.  Glued to our various devices, it probably doesn’t matter anymore to a lot of us who we actually spend most of our time with, how it affects us, since it’s all virtual. But connection matters to me. It’s always been—no matter how scary relationships are for me—a core value of mine.

But I am ambivalent about connection. This is where the scary part comes in. Early on in my life, lonely and essentially invisible in my family. I took myself as my own companion. The family I grew up instilled in me that the world was too dangerous, the cost of relationships was too high, and nothing good could come of putting yourself out there, only disappointment. I believed it (and many relationships reinforced this belief) though something in me, the healthy part that wanted love and relationships, tried to fight it. But the frightened part of me won out.

Some people have asked exactly what happened to me in the mental health system, soup to nuts (hmm. bad pun) the whole story, not just bits and pieces here and there. I get that. And I will tell more in detail in future posts. Part of me wants to tell all the details at once and part of me doesn’t. It goes back to the old and familiar tapes: I feel deeply conflicted about being seen and heard. I have the need to speak out, have a voice. To speak for myself, for others, to find others (you?) who can relate, feel they have a voice. Who else is out there in the wilderness who has been through similar hell and feels alone, unable for whatever reason to speak up? All this collides with feeling overwhelmed by the telling of a story too raw still, insanely complicated, and the bone-deep feeling I will be punished for speaking up, for having a voice, and the feeling of futility. So,  the act of writing this blog,  just hitting “post” is a big deal for me. A small act of courage.

Poof!

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After my last post, I received a comment from a health care professional who (full disclosure) has also acted as a life coach of sorts for me for some years now. “I was left thinking and feeling,” he wrote, ” ‘what would humane inpatient psychiatric care look like particularly with the projected increase [in care with the Affordable Care Act]?”

It occurred to me that the idea of ‘ Camera As Advocate’  isn’t just a one-off post, but  a jumping off point for a series. What would have to happen for there to be no need for cameras as surveillance? There are a number of things to consider, which I’ll talk about in coming posts. The issues of quality of and compensation for staff;  accountability and transparency; inpatient medical vs. inpatient psychiatric; environment/appearance of facilities; continuity of care; the problem of objectification; insurance; who gets treatment and who doesn’t.

This might seem obvious but the most basic factor in humane care is to see the human being often buried under a diagnosis or worse, a merry-go-round of diagnoses and misdiagnoses. It’s depressingly common. I know from my own experience that once I was diagnosed (and misdiagnosed repeatedly) I vanished as a person. Poof!  Through the Looking Glass I went. The excavation of my personal history took a back seat at the rear of the bus  to my being a set of symptoms to be treated. When I finally got a copy of my medical records, there were at least 6 diagnoses from different staff members and doctors who were involved in some way in my treatment. They didn’t consult each other, clearly. They couldn’t make up their minds. They had no idea what they were doing. I was stunned, still am, by the almost casualness, the willingness to just essentially trash my life.

Patients need a voice. They need to be heard. They should be allowed, to the greatest extent possible, to be involved in their treatment plans, to be included in meetings with the staff, have ongoing access to their records, a more open treatment plan that has flexibility if staff has the guts to admit they were wrong or simply don’t know what’s going on. I was appalled at what doctors wrote in my records. But there was no way to change them, no recourse. What they wrote was considered reliable and the truth. I was rendered mute. Patients cannot just be allowed to disappear. That’s a start.