Will Hall’s recovery story

will-hall-monica-cassani-gianna-kali-e1349612607632Since 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.

More of Will Hall’s posts on Beyond Meds

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19 Responses

  1. Denise

    Thanks for the link Gianna. Will is such a wonderful person. I got to hear him speak last night for Mad Gifts Week, along with the very kind founders of the National Icarus Project. I will never forget it. It was amazing!

  2. Ramji

    Please don’t think that yoga and diet can cure mental illness … though it might help to contol it during its milder phases. I was a yoga teacher with an intense practice and strict diet in attempt to cure myself (I’m bipolar) and it did not work. In case you think I did not give it time … I had a serious practice for nearly 20 years and taught for 12 years. In fact, yoga became an obsession and contributed to my illness. I’ve suffered since my early teens and went off and on meds for years. At age 50 I finally gave in to medication after having been off of it for nearly 2 decades and putting my family through hell with ups and downs and mixed states… all the while teaching and practicing a “healthy” lifestyle. You can blame the health care system for not giving proper treatment or diagnosing you properly, but medication helps many people to live at least near normal lives. As for “natural” … cocaine is natural … as are many poisons.

  3. I’m sorry Ramji that you suffered for so many years and that lifestyle changes did not work for you.

    I know of many people for which it has and does though. We are all different. Just because it didn’t work for you, you cannot deny that it works for some unless you call them liars.

    See my about page for a few stories of recovery. I know of many others who have not documented their success.

  4. Thank you, Gianna. I admire Will so much. He didn’t mention this, but the Freedom Centert also has a radio program that Will hosts. You can find it on his website. It is incredible. Will is on my top five list of heros.

  5. Some people require medication, regardless of their healthy lifestyle habits. And while yoga and diet are positive steps toward healing, they may not be enough to tackle an illness that is just too genetically entrenched to be affected by meditation or tofu…like bipolar disorder.

  6. There is no real evidence to suggest mental illness is either genetic or a chemical imbalance.

    there is a lot of evidence that much mental illness is trauma induced and can be healed in a multitude of alternative means to medication.

    I’m quite familiar with the biomedical model and what it can do.

    Are you actually familiar with the thousands of people who HAVE recovered from supposed entrenched mental illness?

  7. anickb

    As one who HAS recovered 101% after trauma and a failed suicide … we now need to ‘attack’ the profession .. and rescue us from their tyranny .. try http://bipolarperceptions.wordpress.com/ for starters .. there WILL be more .. talking about the simile between hibernation and depression AND migration and mania .. seen the animals migrating when they are highly stressed and very jumpy .. what we experience is ‘natural’ responses to stress .. we bipolar people are just more sensitive to STRESS and in fact WE are the ADAPTABLE ones .. with whom others cannot cope !!!

    A couple of weeks ago I ‘attacked’ a DNA professor at a conference on Bipolar for referring to it as an ‘illness’ … when the illnesses are depression and mania .. I also said that what he was seeing in the differences in the DNA was EVOLUTION and survival of the fittest … Darwin and all that … people who are hypomanic are the successful entrepreneurs .. rather than psychiatrists !!

    HE did not even try to respond … in fact he did not have the courtesy to talk to me afterwards … he sulked off no doubt feeling very hurt .. as HE thought of himself as a renowned world ‘expert’ on his subject ….

  8. Zoe

    Gianna are you taking a break from blogging or is there some problem with your newest post, when I go to your blog the newest post I am getting up is 2nd November, though I got the first few lines of a newer one. Couldn’t get the rest of it though. Excuse me if it’s just me…love, Zoe.

  9. Hi Zoe,
    No I haven’t been blogging and I’m not sure when I’m going to resume. I seem to have no inspiration for the time being.

    The “new” post you got, I’m guessing is the one that my subscription email account sent out. For some reason it sent out an old post from Oct. 16th yesterday. I don’t know why you couldn’t get to the whole post though. I know that others on my email list got to it okay.

    In any case it was a glitch.

    Hope to be back in the saddle soon, though I may take a weeks vacation where there is NO internet starting Monday. I really hope we get to do that, but it’s up in the air at this point. So I have no idea when I’ll get back to blogging.

    be well.

  10. Jon

    It’s an unfortunate set of circumstances, being swept into the abyss of a broken system before a realistic and compassionate diagnosis and treatment could be found. The article mentions the look in his eyes when he sees photos from that time. I keep a photo on my desk at work taken before my bipolar disorder diagnosis and treatment. It’s a photo of my wife and I, we were at a party and having a good time. But the look in my eyes – it’s like a wild person is trapped inside. Whenever I wonder about the necessity of my treatment, I look at those eyes and know I’m on the right path.

    A great article, and a great discussion.

  11. I’ve never seen my own eyes reflect so much sadness, as in the weeks and months of my daughter being in the system and experiencing much of what has been said here. Her eyes….are holding the darkest emptiness I have ever seen. I only hope she will be a recovery hero one day herself, from the trauma alone. The hopeful stories written by others help me not to give up hope for a 19 year old. Some days, my eyes held the wild look, the one of anger and bitterness this system reflects in so many of us–broken spirits can be healed—it shouldn’t have to be that way. I stood so many days looking out the mesh wired windows of the psych hospital –then cried all the way home and into the night. I shake my head as I write this, for what I’ve seen, because it is what many here have lived. For that, I truly respect and admire the steadfast journey you are on when discussing the Road to Recovery. Thank you for sharing with others, that it is indeed possible to recover from such hell and pain inflicted on a human being –thus the phrase psychiatric survivor–that many people do not understand. Though I wasn’t restrained–seeing it happen is why tears are streaming down my face as I type.

    I wish a peaceful spirit, to you Gianna.

  12. Hi Ramji, when you say “Please don’t think that yoga and diet can cure mental illness” I do think you are right that if you tried yoga and diet and they didn’t work for you, then they didn’t work for you.

    However there are many many people who have found yoga and or nutrition to make a dramatic difference for even the most severe mental health diagnosis, including helping them return to “normal” living completely symptom-free. That’s not a fact that the pharmaceutical companies or medical establishment help people know about, but it is true.

    It is important to not be dogmatic. I don’t believe one size fits all or any single approach will work for anyone. However many people like me have found holistic approaches helpful. Many people have not. Everyone should have the right and economic means to try alternative approaches.

    In a world where doctors want to say that something is one way and there is one solution, the fact that everyone is individual and everyone will have individual solutions is a hard concept to grasp. I encourage you and everyone to experiment and see for yourself what works and doesn’t work, but to include holistic options as a possible way forward because they have been show to work for many people, not all, but many.

    A resource that may be helpful is this Guide to coming off meds:

    http://theicarusproject.net/HarmReductionGuideComingOffPsychDrugs

  13. This was a great story. I had simular feelings when I was locked away as a young man with bipolar. It took me many years to deal with the stigma.

    The doctors all believed that I had to be heavily medicated all my life. I’ve been off of all meds for bipolar for decades. I’ve achieved many honors including Who’s Who in two different fields.

    I do some yoga, lots of exercise, journal writing, and lots of volunteer work. As a recovering alcoholic, I try to help others. Recovery, inc taught me cognitive therapy.

  14. yay Jim! Thanks so much for stopping by. I would love to hear more of your story if you feel so inclined shoot me an email!

    giannakali (at) gmail (dot) com

  15. All of these comments are interesting and true. People are different. They look different on the outside; I’m sure their chemistries and nervous systems are not identical. I have met, read about and/or heard of many people who recover from mental illness with just a few pills. On the other hand, I have met, read about, and/or heard of many who obtained little or not relief from many types of pills. While pills were not the answer to my mental illness, exercise and cognitive therapy provided saved my life. All of us should allow people to use whatever helps. I would like to push exercise on everyone with depression, but many would never do exercise. People with bad physical health will not exercise, no matter what their doctor advises.

    My big complaint with mental health professionals is that the patient is seldom told that there are a variety of alternative treatments which have been proven to work.

    I see it as my responsibility to my fellow humans to say that I once was very sick, but gained a measure of recovery with alternative methods. People suffering with mental illness need examples to show them that recovery is possible. When a possible alcoholic attends his first AA meeting, he/she is shown a room full of recovering alcoholics. I would like the same thing to happen with the mentally ill.
    Jim S

  16. My big complaint with mental health professionals is that the patient is seldom told that there are a variety of alternative treatments which have been proven to work.

    My issue exactly Jim. For consent to be truly informed options must be given.

    I applaud your sense of responsibility and please feel free to share whatever insights you have on this blog any time you like.

  17. Sloopy Cowbell

    I had a similar experience while I was ‘in the system’.

    A fellow patient vanished from the locked ward. The police were alerted and interviewed the staff and his friends on the ward. They checked his family home, and the homes of acquaintances.

    But noone had a clue where he’d gone.

    The local TV and radio stations ran fear-mongering stories about him.

    The news bulletins showed a dated photograph, and zoomed in on his eyes, as he was repeatedly described as a ‘dangerous mental patient’.

    Viewers were warned that on no account should they approach him if sighted.

    Even the local Labour MP – a hate-filled racist homophobe – wanted a slice of the action.

    The MP whipped up a frenzied media campaign of hatred and hysteria towards psychiatric patients.

    He told the press that he was going to demand action – “mark my words, security is going to be beefed up across the whole mental health system.”

    By now, Patient X had been “on the run” for many months, and with the public growing tired of the story, the media eventually let it go.

    The months past, and Patient X and his whereabouts remained unknown.

    Spring passed, through to Summer, and onwards.

    With the arrival of Autumn, the leaves started to fall.

    As winter approached, and with the trees almost completely bare, the whereabouts of the elusive Patient X, at last, were revealed.

    There he was, thirty or more feet in the air, hanging by a rope from a cedar tree, and barely a hundred yards from the hospital.

    The hapless soul had been hanging there for more than six months.

    The hate-filled MP never did offer condolences.

  18. ^Thank you for telling me to read this G.

    It was great and I would personally like to know more about the organization.

    He sounds like an incredible person.

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