Personal Stories

When the psychiatrist prescribed me Zoloft, he did not warn me that it could cause a manic episode. So my second hospitalization was a disaster. A mental hospital is like a deranged dystopian high school. The upstairs was chaotic, dangerous, and violent. Sometimes people were yelling and throwing things. But these weren’t the most harmful moments.

When we eliminated his last psychotropic prescription, it was as if my father came back from the dead. All of the monster-like qualities that we thought were severe symptoms of his dementia have practically disappeared. We’ve found ourselves questioning whether he has dementia at all.

I feel like I have been failed by the healthcare system over and over again. I expected to be able to rely on therapists, psychologists, and doctors to properly evaluate, diagnosis, and treat me… especially when chronic suicidality is in the picture. Instead, I have a lengthy list of ways I have been failed. These failures have often added to my hopelessness.

Although I have usually been the one suffering from side effects, with others watching on, the roles were reversed in this incident. Seeing my mother impaired caused me heartache, and I am now rethinking my treatment regimen. Is this stuff good for me for the long term? Is this the only stuff that can help me, or is there an alternative?

To be a parent of a suicidal child is to be in a terrible position, where you hold in your hands the life most valuable to you and know that any slip of your hands may end that life. In the 1970s, my suicidality was treated nonmedically and I lived. In the 2000s, my daughter Martha’s suicidality was treated medically and she died.

Dating someone when you have a history of “schizophrenia” is very hard. I figured that if people left me for something as common as depression, anyone hearing my story of psychosis would give me an immediate boot. My initial efforts were awkward and lacked discretion — into each date I’d burst, willing to commit for an eternity with unconditional love.

I had managed to get off the drugs again, this time with practically no withdrawal reactions other than some disturbances to my sleep which eventually settled down. I truly feel that I have been given a second chance because I am aware of how many people struggle terribly with these drugs just as I did.

It would take decades before I recognized the trauma caused by repeatedly being separated from my mom when she was hospitalized. I grieved almost exactly the way children did who had lost a parent to death. Yet it was grief without closure because my mom was not dead, just... gone.

Take every horrific feeling you’ve ever had in your life, all at once. Now, times them by 200, right in your gut. That is how akathisia pain feels. When I tell doctors I have drug-induced akathisia, and that it's incredibly painful, they do not believe me. They say my pain is a mental health issue, and they have all methodically undermined my credibility in my permanent record.

I still believe I was Anne Frank in my past life, and nothing is wrong with such a belief. I am no longer Buddha, though, because they crashed my spiritual awakening when it was happening. But I go on. I deserve to be happy. I have a family to think of, I want to contribute to society on some level. I want to live. They won’t crash me. Or so I hope.

I remember clearly thinking, “I’m done. I’m not putting myself through this again.” I wasn’t going to settle for the side effects of a marginally better than placebo treatment again. Here is a brief look into my rollercoaster journey of recovery, returning to work, having my trauma re-triggered, finding a way through, and finally living well.

My therapist and I jointly made the decision to wean me off of the drugs. In the beginning, it was a very scary process for me. Since I had twice gone off medications on my own, I knew how bad it could get. The good news is, I am alive. I feel alive, and I now have emotions, both good and bad. I am very grateful to have all of them.

The world calls what was "wrong" with me "bipolar." I prefer the notion that I went through a birth process to become the healer that I am today. I can't be silent because I know there are people like I was who are trapped and may not realize it yet. When they begin to see the prison bars that surround them, I want to be there for them as others were for me.

We were caught in a tug of war. They wanted my voices gone. I was not going to let go of my voices, my confidants and protectors, regardless of what they did to me. We have the right to hear voices and no longer be hidden away in the attic of taboo and misunderstood experiences. The freedom to hear voices is truly a fundamental human right.

The drugs combined with my desire to know how life worked and what made a human broke down all past social conditioning of my individual self. I realized I was God. So was everyone else and I shared with anyone who would listen, but found no one who could understand or navigate the territory. There was little internet to speak of then and no Google to find others who experienced life as I was, so I voyaged on my own as best I could.

$24,000 later and no one knew what was wrong with me. They sent me home with a bag of pills. After being in the hospital, I developed a fear and mistrust of doctors. My general practitioner suggested antidepressants. More pills. It was all they could recommend. I wouldn’t take them. My anxiety worsened. I was obsessed with the idea that if I slept, I would die. So, I stayed awake as much as I could. For an entire year, this was how I lived.

My experience is that living in a psychosis forces your brain to "stretch" — you develop extra capacity to handle things. I was pretty much living a normal life, even working some of the time, while having all of my psychotic problems. After the psychoses faded away, I no longer needed to fight monsters, but I still had that extra capacity left. After 11 periods of psychosis, my brain has never worked as well as it does now.

If I had a clinical problem, why was something as ancient and simple as meditation helping me? And if normal positive human habits could be so profoundly useful, why the heck was the field marketing pills and “clinical” coping mechanisms to me instead? This frustration helped me jump ship from the medical mindset and hop into the world of humanity.

Ironically, my post-traumatic stress disorder no longer stems from the events that led to my hospitalizations, but from the maltreatment I received within the hospitals. Now, every time I take my medication late or miss a dose, I feel the unsettling presence of dissociation creeping in, the terrifying panic of losing my mental bearings and being rehospitalized. 

Although I left Ueckermünde without the ability to speak, heavily traumatized and barely able to move, I managed to reclaim life after more than a decade. Today I am one of the few witnesses who survived the Hell of Ueckermünde, who can tell the story of my companions and raise awareness of the injustice committed against us as well as demand answers.

Upon my release I was dumped at a motel with no ID, no money or method of payment, and not even a cell phone to call friends or family for help. My belongings were still locked in a safe back at the hospital. Where are the real advocates for more low-income housing, and where the hell have they been for those who are incarcerated, whether it be in jails and prisons or mental facilities?

This is my story of forced psychiatric treatment as an eight-year-old girl, from my perspective as an adult mental health professional. Being held down kicking and screaming to be injected with a benzodiazepine is a human rights violation no child should endure for saying no to a pharmaceutical. In hindsight, when I reflect on that day, it feels like a form of child abuse.

My sincere message to those whose vitality and lives have been sapped and zapped by this iatrogenic dis-order: most of us DO recover! And even if it is not without some benzo remnants lodged in our cellular memory, what we learn about our own resilience will guide us to places in our lives we didn't expect to reach. HOPE was my key through the arduous path of withdrawal and recovery.

Recovery is adapting to how your brain works. You accept how it works, observing what makes it worse or better, and learn to navigate the triggers and symptoms you experience. As you do things differently, these 'corrective experiences' begin to undo the negative beliefs you have internalized.

Many have asked: “Why doesn’t my doctor/provider know what is happening to me?” Benzodiazepine tolerance and withdrawal are not new. So, why isn’t it simple to diagnose and treat? As both a health care provider and a withdrawal sufferer, I’d like to offer an inside and outside perspective on this question.