Personal Stories

I have lost interest in making sense. Insofar as anti-stigma entails a reassertion of my apparently forgotten humanity via the retelling of some personal narrative in which I generalize my unique experiences toward some universal wisdom, I have lost interest in the reduction of stigma. I would much prefer it if you didn’t need me to be comprehensible.

In contemporary U.S. culture, people who intentionally hurt their bodies are called “insane.” We may starve ourselves or carve ourselves, taking to the extreme culturally-embedded norms like thinness in an effort to fight against marginalization or cope with internalized shame. But instead of obtaining the voice or place in society we yearn for, we are further ostracized.

I'd like to share some personal thoughts on the nature of the Hearing Voices group method, and the insights that this kind of support generates. Through these groups, a tradition of mutual healing is being created that honors subjective experiences, and sharing our stories with each other in this way propels this exciting movement forward.

Asking the psychiatrist to discontinue medication was one of our bravest moments. It went against everything doctors had told us over the past twelve months—against Rebecka’s regular psychiatrist’s vehement opposition (“You can come back when it doesn’t work.”). It went against what we heard repeatedly in the media and in pop culture. It went against what we saw in the advertisements during the evening news. And it was the turning point in Rebecka’s journey toward optimal mental health.

Psychotherapy (I’m still searching for a better term, since the word ‘therapy’ involves thinking that there is sickness somewhere) is not about knowing everything. It’s about humanity, doubts and uncertainty. It’s about reaching out and reaching in, authenticity and honesty. It’s the most demanding thing I have ever done, because I’ve fully involved myself in this work; I use my own feelings, scratch away at my existential issues and try to care as deeply as I can for people who choose to enter my office. Sometimes, I know exactly what helps and what doesn’t. Sometimes, I have no idea. In a very odd way, it’s the most professional attitude I can think of. But it is also the lonely way.

Healing mental health issues through correct supplements as well as nutrition is, I believe, the final factor for me in my journey. This is possibly what was missing in my first attempt at coming off, and why my brain and body couldn’t handle the extreme anxiety I felt in December 2013. I am ensuring that as I prepare to taper off the Lexapro in 2015, my brain and body are being supported in every way possible.

Much of what we term “madness” is, in fact, the awakening of the "Self" to its own Wholeness/Divinity. We are born totally pure. Throughout our lives we are subject to projections, flung at us from a multitude of directions: from Mom and Dad, from schools, religious institutions, the media, and the medical model. We are all buried, to some degree, under projections, and interesting symptoms emerge: nightmares, stress and anxiety, fear, flashbacks, and so on. These are not "Madness," but symptoms of health; of a "Self" attempting to break free from lies.

It took surviving all of the symptoms of benzodiazepine withdrawal, including derealization, gastritis, auditory hallucinations, wasting, dementia, panic attacks and profound depression, for me to come to understand that not only had I really been a cool person before all that shit, but also that nothing was wrong with me. I was smart and a little neurotic at times, but that was it. Drugs caused me to be mentally ill where I had not been before.

Being mad is liberating. Well, at least with practice and determination, because, let’s face it, being mental (with a confirmed diagnosis) is not a high status on the scale of popularity in our society, defined as it is by the standards of normality.

Last fall, I was invited by Psychiatric Times to write an article from a mother's perspective about what is needed to "fix a broken health system." As part of my essay, I told the story of my son Jake, who was robbed of all hope by the mental health system and died a homeless man. I also told the story of his cousin Kimmy, who escaped from the mental health system and is now doing well. Psychiatric Times declined to publish my essay.

I am a psychiatric survivor of over thirty-six years. Since my nervous breakdown in 1978, I have undergone multitudinous experiences ranging from the subtly humiliating to the horrifically debilitating at the hands of incompetent psychiatrists and psychopharmacologists who, in the name of medicine, did more harm than good.

I have written this story, a story of Exodus to Freedom, a thousand times. I retell it to myself late at night while I lie on my air mattress. In the mornings I may recall these amazing events while running along the beach straight into the sunrise. I walk my dog and tell the story again, hoping passers-by don’t think I’m talking to myself, lest I be called “loco.” But that has never happened. The one aim I had when coming to Uruguay has come true: Not one person here considers me crazy.

The present-day mental health establishment focuses primarily on a ‘biological’ cause for despair and other so-called ‘aberrant’ mental manifestations in the world. But when we look at the news, it’s bursting with sad realities. Animals dying, people starving, rape everywhere. Climate change bringing more disasters, racist mortgage practices. Are we to grow a skin so thick that we don’t cry when we read about a government firing scud missiles on its people? How are we to process mass-murder in an elementary school? What is more aberrant: to be so hardened that we do not cry, or to cry constantly? Might the healthy response to depressing realities to become depressed? How do we create hope when so often our world seems so terrible? How much activism is enough?

And so I embarked on the darkest journey of my life, one for which neither I nor my husband were prepared. I soon found out that there was no one who could help us. The psychiatrists, even the more sympathetic ones, were not making sense to me. I was coming from the business world and I was not used to accepting superficial answers. They could not tell me what was wrong with Helia and why this had happened to her. They could not answer my challenging questions about the scientific research in the field.

The childhood and psychiatric abuse altered my neurological, hormonal and other bodily functions and it was difficult to say which abuse left what mark. The doctors used medication to fix the changes and the taking of prescription pills became a habit. I took pills to calm me, pills to sleep, and pills to make me happy. A few months after stopping all medications, I was a bundle of nerves and I opened the cupboard for a pill. Living on autopilot as I had been doing for so long had to stop. I switched gears from absentmindedly resorting to pills, to purposefully calming myself without using drugs by breathing the way the psychologist had taught me.

There were days that I’d wake up and all I could do was cry for no particular reason, just another miserable day of withdrawal. However, the idea of taking photos would get me out of the house. Especially on those days, the absolutely only thing that would get me to move at all was the idea of taking photos. One particular day, I was just crying, crying, crying, and as soon as I got to a beautiful spot that I loved, I stopped crying, took photos, and felt at peace. I even found that the days I felt the worst were the days I took the best photos.

Yoga helped me explore and reconnect with the body I’d abandoned and abused for years. My pain and sadness had me living exclusively in my mind, my body nothing more than a battleground for my inner wars. Through yoga and meditation, I slowly began to love myself again, learning to treat myself with care and respect. I felt a greater sense of self-awareness, and a sense of connection to something greater. This was a drastic contrast to the days when I felt as if god had forgotten about me, or like I was a mistake not meant for this world.

It took coming off psychotropic drugs completely for me to become awake. I had the doctor I was seeing wean me off, though she didn’t want to (instead she suggested I take different drugs.) But here I am almost two years later and I am feeling all of my emotions and managing them well. I knew best what I needed, and I trusted myself. Life has shown me that I can endure many trials and tribulations without giving up, and I trust myself today to reach out for help if I need it.

Back in 1983, I put myself in a mental ward. I desperately wanted help with my eating disorder, but no one took these types of problems seriously back then. The ward was rather nice, so I returned many times. Nothing good ever came of it, but I always hoped this time, it will do some magic. Every time I left, I'd realize my eating problems hadn't been solved at all.

To this day I do not know how I found my way back. I think it might’ve had something to do with willpower, as I was NOT going to lose myself. I was NOT going to end up like those people who were living indefinitely in the hospital—those “chronic schizophrenics”, as they say. I was going to find my way back, back to myself.

It was the first time in my Klonopin journey it occurred to me the problem might not be inherent in me. The problem might actually be the Klonopin. Convinced my very life was at stake, I made the firm decision to get off the stuff once and for all.

I was in a form of reparative therapy in British Columbia, Canada, for six years, after which I filed a medical malpractice suit against my former psychiatrist, “Dr. Alfonzo,” for treating my homosexuality as a disease. If these new laws are to be criticized, it is that the use of “change” therapies on people older than 18 should be prohibited as well. I was 24 when I met Dr. Alfonzo, 31 when I left his therapy, and almost 40 when the lawsuit ended in an out-of-court settlement in 2002. Nearly twenty years after leaving the therapy, I am still affected by the consequences of those six years of “treatment.”

I am writing this letter, after much consideration, in the depths of benzodiazepine withdrawal. I need to be a voice in the midst of silence; I need to be heard before you write one more prescription for a benzo or any other mind-altering drug for that matter. It is my hope in writing this that you begin to ask questions as you sit across from your patients: why are they depressed, anxious, insecure, fatigued, paranoid, agoraphobic? Are the drugs I so readily prescribe contributing to their declining physical, mental and emotional health? Are these drugs really the answer? What are they really doing to the brain?

I’ve come to understand that a single-minded focus on either therapy or medication can do great, if unintended, harm. I’m sharing this brief history of my journey, with both my good and bad decisions, to illustrate the importance of conscious care, and of maintaining the ability to change course.

I was never told directly that I had 'schizophrenia', and I am very glad about this. I know I was feeling bad, very bad, and was unsure of what to do, but I don’t see how a diagnosis could have helped me at that time. What could I have done with it? To be marked with a label like that would likely have caused me to rebel even more.