Since I was a child I’ve struggled with extreme emotions, voices, and powerful out of body experiences. I remember falling to the ground once in third grade, writhing in agony because I believed something was grabbing my back. I saw cartoons projected on the ceiling, and my fear was sometimes so strong I became mute. I often hid away, alone, overwhelmed and unable to describe what was going on.
I carried all this hidden within me my whole life, going from therapist to therapist but never feeling safe enough to really talk about what was happening. My first experience with psychiatry was when I was referred to a doctor at age 24. I left after one visit with a prescription for Prozac and a handful of free samples. At first Prozac was like the best cup of coffee I had ever had, I was being very productive, getting up early, and really feeling “better than well.” But then I had a manic reaction. I was suddenly acting very differently at work, wearing weird clothes, and getting into loud arguments with the people around me. It was the first time anything like this had ever happened, and it was absolutely terrifying. My doctor and therapist didn’t warn me, and nobody got me off the Prozac when the manic reaction started: it took me years to even realize that the drug was the cause. As a result of this manic side effect and the shame of how I acted, I ended up leaving work, a career position in an environmental organization and my first big job out of college. I lost all my colleagues, friends, and professional contacts, and started spiraling down into poverty.
At age 26, I hit a breaking point, and wandered the streets of San Francisco all night hearing angry voices telling me to kill myself. I ended up in the locked unit of public psychiatric ward in San Francisco. I was never asked if I wanted to go to the hospital, or given options or support in figuring out what to do. I was just observed for several hours in a clinic, and then they announced that I couldn’t leave. I was told I was a danger to myself and that it was for my own good, but like so many people it was really being in the wrong place at the wrong time. I begged them not to lock me up, because I didn’t want to lose my two jobs. I kept saying Please let me go so I can go to work, please, I can make a no harm contract, I don’t want to miss work. But I ended up losing those jobs.
When I arrived at the hospital, it was like a prison. The chaos and violence, the crowding and screams were terrifying. Throughout the night police brought in anyone fitting the ‘mental’ description and dumped us all together. In my vulnerable and fragile emotional state the impact of this pandemonium was devastating. I was in shock from fear.
That began a year-long stay in the public mental health system. I needed help, but instead I was treated like a disobedient child with a broken brain, punished and controlled, including more than two months in a locked unit. I went from being a human being to being a mental patient. I was put in restraints – not because anything I did but they said it was just for transporting me to the hospital. After being restrained I had nightmares that I was being raped, and I still have flashback reactions to anything that reminds me of that experience. During the time I was in the system I was locked in an isolation cell, threatened with being strip-searched, given more than a dozen different drugs, and subjected to patronizing group therapy that never acknowledged what was really going on.
I spent several months taking a very powerful ‘anti-psychotic’ tranquilizer drug called Navane, used to treat schizophrenia. It completely changed my personality and denied me the most basic sense of who I was; it made me stupider, slower, fatter, and also, because of the side effects, at times more desperate and suicidal. At one residential facility I was at, a man had killed himself right before I arrived. A patient who was his friend told me why: he was having severe side effects from his meds and no one was listening to him. The meds were why he jumped off the roof and killed himself, not mental illness. When I was on medication it was impossible to know how much of my pain was the medication, not the problems I had to begin with.
I have photos of that time, and the look in my eyes is totally different, not me, a different person. I was basically a zombie, but I was being docile so they considered it recovery. Today I worry that I might have some lingering side effects from the Navane and other drugs I took, including twitching in my body, memory disturbances, and worsened panic. There could be other long term damage that I may never be able to sort out and recognize.
My father is Korea War veteran and an electroshock survivor from hospitalizations in the 40s and 50s; he was subjected to what amounts to torture by doctors, at the request of my grandfather to punish him for acting out as an adolescent. My father’s emotional scars from this directly affected me and the rest of my family, because he never got adequate help and carried around severe trauma all during my childhood. When my own psychiatrists found out that my father had been in mental hospitals too, they used this to try to convince me my problems were genetic brain malfunctions correctable by medications. Not once did they ever ask me about my own childhood experiences of trauma, or make the connection of how this might be behind my difficulties. Only later, after researching things on my own and discovering the writing of Robert Whitaker and others, did I learn that there is no solid science behind blaming genetic predispositions and chemical imbalances, and that childhood trauma can play a big role in what gets labeled as ‘mental illness.’
After more than two months locked up the doctors said they had tried everything. What they meant was they had tried all the different medications they could think of. They said that when nothing else helps, electroshock is needed. I desperately wanted to get better, so I considered agreeing to go ahead with it. My father had told me of his bad experience with electroshock and how it harmed his memory: he keeps a quote from the author Ernest Hemingway above his desk, and I knew that Hemingway had killed himself after receiving electroshock. At the hospital they told me it was completely safe and effective and had no negative side effects.
But then I got very lucky. I was there involuntarily because I was considered to be a danger to myself and unable to take care of myself. A social worker came and suddenly announced that they were releasing me immediately. She said the public insurance that was paying for my stay had run out. So overnight I went from being too sick to let go, to being discharged. I ended up in a homeless shelter that was violent and run down, but being out of the locked ward instantly lifted my depression.
The testing they did in the hospital led them to give me a diagnosis of schizoaffective disorder, a form of schizophrenia. The humiliation of being labeled schizophrenic threatened to become a self-fulfilling prophecy: in the hospital, shelters, group homes and programs I was put in I was being socialized into being a mental patient. I was encouraged to see myself as a broken invalid, to forget my strengths and instead focus on my weaknesses and vulnerabilities as evidence of being a defective human being. I learned to fear what was inside me as signs of my ‘disorder,’ and to turn over authority of my mind and experience to doctors and therapists. Everything became a symptom. I remember telling my hospital psychiatrist I was reading existentialism and Marxist philosophy, and later I found out he had put this down in my medical record as a form of bizarre behavior. My ‘treatment plan’ instructed me to give up my passion for activism and organizing. When I tried to talk about my sexuality and being bisexual, they told me that my feelings were part of my disorder.
Because of all this, today I live with ongoing and very realistic fear of misunderstanding and stigma. I have to hide my psychiatric history from most people in my life. Once you’ve revealed your history to someone and then they treat you as less than a full human being for it, fearing you or acting differently towards you, you learn to keep your history hidden. This means a life in the shadows, a second class citizenship, a sense of not being part of the human community. Try living with that and see if you start to feel paranoid.
Today I have stayed out of the hospital for more than 14 years. I got off medication and learned about nutrition and changed my diet. I have to avoid milk, caffeine, and sugar, which directly cause my anxiety and symptoms to worsen. Of course, in the hospital every meal included milk, caffeine, and sugar. I took classes in yoga and meditation and began to see an acupuncturist. I do a lot of things to promote my own mental health, but I learned absolutely none of it in the mental health system. The mental health system was completely useless to my mental health.
I also watch for early warning signs of problems, and have wellness tools to support myself, such as regular exercise and paying close attention to my sleep patterns. I also began to consider the spiritual aspects of what I was going through, listening to the voices I heard and exploring their meaning. At one point back in San Francisco, for example, I heard a loud voice telling me I had to do yoga or I would die. It was frightening, but I realized it was like the voice of an angry parent or guardian looking out for me. So that voice is why I began to practice yoga.
I might be different than most people around me, but being different also means being creative and sensitive. I stopped seeing myself as a broken person with no chance for recovery. Most importantly, I reached out to other people who had also been diagnosed as mentally ill, and we began supporting each other in discovering our own pathways to healing. For too long I had been trying to do this all on my own. Having people around me who believed in my recovery was crucial.
It took me ten years before I could start researching and doing activism on these issues, without being overcome with fear and traumatic memories; today I still can be overwhelmed when I try to read books about the mental health system. When I moved to Northampton I was very fortunate to meet Oryx Cohen, a psychiatric abuse survivor who had been diagnosed as bipolar. There was no group run by and for people with severe mental illness labels themselves — everything was run by the mental health system. No one was talking about psychiatric abuse, it was as if it didn’t exist. So we co-founded the Freedom Center together.
Today we have a free weekly yoga class, a weekly support group, a writing group, a radio show, an acupuncture clinic, we do advocacy for people facing abuses, and have regular community events – you can find out more by checking out our website http://www.freedom-center.org. You can also read people’s stories on our Speak Out pages of our website, including stories of other people recovering without medication.
We learned that the protection and advocacy system, the human rights officers, the DMH complaints system – it might be better than it was twenty years ago, but the system is still failing to protect people’s basic rights. We’ve advocated around full blown medical malpractice, where staff are ignoring major side effects and the client ends up in a coma or with tardive dyskinesia brain damage, and nothing happens when complaints are filed.
So we do what we can. We have helped people fight forced drugging, helped people avoid hospitalization, helped work for phone access, told people about drug side effects their doctors didn’t, helped people locked up get basic rights like access to dental care, organized against drug overmedication, connected people with low-cost alternative health care, and done whatever we could to help and advocate for people. We’ve done all this as volunteers and with a shoestring budget. We also work with mental health staff and professionals. We welcome them to join us as allies and supporters, because we understand that staff are in this profession because they care about people, and that often they are trapped in institutions they want to change.
Freedom Center’s work is controversial, and people sometimes stereotype us as being anti-drugs. We are pro-self determination and pro-choice. We don’t tell people what to do or tell people to stop taking drugs. Many people who are part of the Freedom Center take psychiatric medications. We help people find out for themselves what works best for them, because only you can determine what helps you. We help people get off drugs slowly and carefully, but only if that is what they want to do. And we call for accurate, honest information about psychiatric drugs so people can make a truly informed choice. Right now the system is not giving people accurate information about drugs or about mental illness or helping them explore coming off if they want to. To meet people’s needs for guidance around medication, we recently published the Harm Reduction Guide To Coming Off Psychiatric Drugs, available for free online and also translated into Spanish. The Guide counsels people to make their own decisions, balancing the usefulness some people find in psych drugs with the dangers that can also come from them, in a harm reduction approach to meet people where they are at.
We also want to make sure people have access to alternatives. The whole system is focused on drugging people and downplaying how harmful drugs can be, and there are few real alternatives offered. Right now the mental health system is playing custodian to people in the Northampton community who are so medicated they are visibly stiff and blunted – you see some of these folks walking down the street year after year. We need to be honest that medicating people into submission is a failure, that options are needed and it is wrong to just watch people deteriorate from side effects. We need more funding for social supports, for therapy, and for alternative health care choices.
I recently saw a video from England, and I was completely surprised to see a public mental health client meet with a body worker who was giving her regular massages as part of her treatment. People say we’re somehow being unrealistic to expect that people in mental health crises should have access to alternative health care, such as massage and bodywork – but they are in fact already beginning to do it in other countries. Mental health is part of a broken health care system that in the US that needs to be completely overhauled, and alternative treatments and holistic prevention should be part of that as an option for people. In countries that use a lot less drugs than we do, the recovery rates are higher.
Freedom Center is also opposed to forced treatment. We have had involuntary hospitalization, restraints, seclusion, and forced drugging happen to us, and we know for ourselves how violent and damaging force can be. There are alternatives, and we need to start funding them and using them. Voluntary programs work better, cost less, and don’t run the risk of traumatizing people, which drives them away from services. Forced treatment is based on denying people equal rights under the law. Everyone in society has the right to refuse medical treatment, even if doctors say it is going to harm them to do so, such as cancer patients who can refuse treatment. But psychiatric patients are routinely denied the basic right of choice. Today there is funding for wars and corporate bail-outs but not for voluntary mental health care, and many people even end up in the criminal justice system because that is all society is funding.
As I’ve grown stronger and healthier, I was inspired to dedicate myself to helping others make it through the ordeal I survived. I joined the coordinator collective of The Icarus Project, a growing community of people living beyond the medical perspective and exploring creativity, activism, and spirituality. I started hosting a weekly radio show syndicated through Pacifica, Madness Radio. And after moving to Portland Oregon to attend graduate school I have begun organizing a Hearing Voices network here. Though many people find good support from doctors and medications, growing numbers around the world are calling for alternatives to the mainstream “one size fits all” approach to mental health. Freedom Center represents a living example of that alternative, and I hope you will start to hear more stories from people like me who have found our own unique ways to heal.
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