People often ask me how I got into the work that I do, and while I always answer honestly, it’s been over 15 years since the events that led me into this field.
So my answer isn’t always that close to the source. It’s become rote, the story no longer potent to me.
Last week though, I got an email from a man named Michael Susko, who I met at a MindFreedom conference in 2007. At that time he was taking oral histories for a book he planned to write on transformational stories.
Well, he’s finally finished it. It contains the stories of a bunch of psychiatric survivors and activists and is called, “Transformational Stories: Voices for True Healing in Mental Health”. You can check it out on the Barnes and Noble website.
And exciting, he said I can share my story publicly. It’s a way more interesting and detailed account of what I went through than what I tell now as it was only a few years after the fact.
From Michael Susko:
It has been sometime since I took oral histories at three Survivor Conferences some years ago. As editor of Cry of Invisible, many persons and entrusted me with their permission and oral histories with the view to seeing them published. I had some time ago, transcribed and began composing the book, but the initial publishing effort fell through. Now I have finally been able to complete the project, publishing some 16 advocates which include some professionals in the field. The listing includes:
David Oakes John Weir Perry
Ron Bassman Sally Zinman
Linda Andre Matthew Morrissey
Judi Chamberlain Oryx Cohen
Leonard Frank Dr. Curtis Adams
Irene Lynch Chaya Grossberg
Paddy McGowan Voyce Hendrix
Peter Lehmann Al Galves
Michael Susko editor
This photo was taken of me at the conference, before smartphones and all:
Here is his oral history transcription of my story:
I was only on Risperdal for a couple weeks when I just decided to stop taking it. I didn’t know anything about withdrawal from psychiatric drugs. When I got off of the drug, I started to have really intense panic attacks. I never had anything like that before. I was totally in a state of freak-out. I just couldn’t think about anything. My heart was beating really fast. I just couldn’t do anything.
I really couldn’t put it together because I had only been on Risperdal for a short time. So it just didn’t occur to me that I could have developed a dependence. I had never had this sort of panic attack where I just didn’t know why I was feeling hyper-anxious. It was that type of emergency anxiety where I didn’t know what to do.
I had an inner sense that I didn’t want to be on the psychiatric drugs, but I didn’t have this community of people who were talking about it. I actually had the opposite, people telling me to take my medication and that meds were the thing to do.
Because of this experience of panic that I had, I was diagnosed with anxiety disorder. I was given Xanax as an emergency measure. I took it several times a day. Then I was put on Buspar, a very low dose. I would take Xanax as needed. I ended up getting addicted to Xanax, and I didn’t know about that either. I kept having really intense panic.
The second time I was hospitalized, it was in large part because of that withdrawal from Xanax. I ended up in a program called Windhorse Associates. It’s a semi-alternative program that sets you up with a team of people to help you with whatever you’re going through. The people that work there actually didn’t know very much about psychiatric drugs. They didn’t really know how to tell if somebody is over medicated or what to do about it. They didn’t really know that much about the dangers of psychiatric drugs. Either that or they’re just too scared to do anything about it.
Note: this was in the early 2000s and I believe the staff at Windhorse (along with the rest of the world) knows a lot more about psychiatric drug dangers now.
In the time that I was there, I ended up being on seven different medications at once. I was totally fatigued all the time, and I was getting the flu every single month. Then I had this idea: Do I have chronic fatigue syndrome? My mind wasn’t really with it. It wasn’t really thinking the way it ordinarily would. I started reading a lot about chronic fatigue syndrome.
I was on so much medication that I just didn’t care about anything. It was like, “Whatever, give me whatever medicine you want.”
“Well, let me try you on this,” my doctor would say. He was a very nice man. I think he believed in the placebo effect, so he would say, “I’m going to put you on this medication. This will really help.” There would be something for my thyroid. He would say, “This will help boost your energy.” Every week I would go to get help, and he would give some kind of pep talk with something else.
So I ended up on seven different drugs, and I was totally fatigued all the time. I also had this condition where I needed to be in constant motion. I would be walking round and round my block just because of that feeling of needing to keep moving. The medical word for it is akathisia.
Then I got three months of fever, a drug fever, which I didn’t know was a drug fever. I was totally doped up and in bed for three months. I ate the same things every day. The fever went away. I was not healthy at all. I couldn’t even walk around the block. Just standing up to take a shower every day was a huge struggle. I was exhausted at the end of taking a shower.
By this time I started to buy into the notion that I was mentally ill. I had never really bought into that before this. I did have a fear that I was crazy, if I was going through something difficult before. I would think, “What if I am going crazy? What if I am mentally ill? What if I’m psychotic?” That would spur me on to feeling more alienated and scared.
So I was totally on these drugs, and my mind wasn’t working. I thought to myself, I guess I’m mentally ill, and I’m going to be on these drugs the rest of my life. That’s what people told me. Then I had a dream about getting off Risperdal. I don’t remember it very well, but it just told me to get off Risperdal.
So I tried it, and at first it didn’t work at all. I really had a hard time. It was like I was in a state of extreme panic. When your body is totally shut down and unhealthy – what many people become when they’re on the drugs for a long time – it becomes much harder to get off the drugs. If somebody is healthy, it’s really easier to get off meds. So I had to go really slowly. Eventually, I did get off of Risperdal.
I was still on Effexor, Prozac, and Buspar. Compared to Risperdal, Prozac was easy. I just stopped. It does cause withdrawal, but it leaves the system very slowly so you don’t have that sense of sudden withdrawal.
Interestingly, I had these very spiritual experiences while I was on the medications and really sick. I felt like I was having some kind of trip. I had all these long, long days of just lying in bed. I felt really connected to people who had died. It felt like a near-death experience because I felt no connection or attachment to the world. It was the type of spiritual experience someone might have if they were on a retreat. Actually, one of my counselors had been a retreat guide, and he could sense the spiritual space I was in. That is something that I don’t talk about that much because now I’m on this mission to inform people of the dangers of medications. So I often leave out the parts about how I was actually in a state of spiritual bliss because I was so sick. That was pretty constant.
All the time when I was so sick that I couldn’t function, I was almost always in a state of a 100% detachment from the material world, like the Buddhist ideal of being non-attached. There was also a sense of meaninglessness, like: Why am I even eating? I don’t care. There’s no reason…. There was no desire for anything. I really didn’t know why, but I just kept eating. I would ask myself, Why? What for? It wasn’t a depression. It was like a total lack of care. When I watched other people in the world doing their regular lives, it was just like Why? It did not make sense to me how people were living their lives. It seemed to me that if people were doing anything that had anything to do with the material world, it was just ridiculous.
Also, while I was on all those drugs, I wrote this very mystical poetry that would just come into my head. Since I was so disconnected from my health, it was just coming directly into my mind. Because my mind itself wasn’t even functioning, it was like these words were just coming from a spiritual source. Some of that poetry is in one of the books that I have published. One that stands out in my mind starts with:
I wonder when I get well,
I want to know about my journey.
How do you sleep on the slants of hills?
There was a part of me that knew I was going to get better from it all. Other people had told me also. I had prophets in my life, people who just said, “I know you’re going to get through all of this,” which was a total pipe dream at the time. I mean, I couldn’t walk around the block. I couldn’t even think about what to eat. There was just so much stuff that I couldn’t do.
The idea of getting better from all of this and actually having somewhat of a functional life again seemed so out of my league. I had lost touch with all of my friends. None of them knew how to deal with this. I didn’t even know what was going on, so I could tell them. I was in such a different world. I guess I had one or two friends that would still talk to me on the phone.
I had stopped going to school, but I decided to go back to college even when I was in the process of withdrawing. I was still really unhealthy. I was scared about going back to school because I knew my mind wasn’t working very well, and my body wasn’t working very well. It was scary, but I had this spiritual inspiration that I needed to do it.
When I was back in school, I was still on a couple of drugs that I was in the process of reducing. I reduced them whenever there was a week off from school. So when I had a week off, I would reduce that week really slowly. Sometimes I would just stay in bed for the whole day. Sometimes I would go for really long walks, then come back and still be in state of total panic. I’m really grateful that I was able to get off all those drugs. It’s been about three years ago.
So I was finishing up college and writing a lot in college. That was one of my focuses, creative writing. Basically, I just had to get through another year of college to graduate. Hampshire College had a lot of flexibility in terms of your final project. It could be basically anything. So one of my teacher’s helped me to write a memoir of what I had just been through and what I was still going through.
So I was still coming off of the meds. My brain was still recovering from all the damage that the medication had done. I wasn’t writing as well as I had done before, or as well as I do now. So that was kind of humiliating, being in college and feeling that my brain wasn’t working. It was hard, but I did write the memoir. I felt like OK, I at least have some of my brain back. I can write. I’m going to tell this story in my words. So I spent a lot of time working on that memoir, working on writing. That was how I was finishing college by working at that project.
After I got off all these psychiatric meds – it took about eight months – I got involved with the Freedom Center in Northampton. There were a lot people there who were really supportive and excited to have me start doing a lot of public speaking, telling my story. That was my entryway into the world of people again, as I had been isolated for so long.
The Freedom Center threw me on a mission to inform people about the dangers of psychiatric drugs because I could have died, definitely. I had been a 100% stripped of my health from the drugs. There is just no way you can go through an experience like this and come back and just resume your life as normal again.
Once I got off all of the meds, I started to reconnect with people and get involved with the Freedom Center. I also started writing a lot. I’ve always been a writer. Writing has always been my core and I wrote a lot more poetry. As I got more and more involved with the Freedom Center, I would write my poetry about what I saw going on out there in the mental health system.
I had to take care of my body. I was recovering my body and my health. I was really into yoga, exercise, lifting weights, and eating well. For a while I was obsessive about food because I felt like there were certain things I couldn’t eat. I had to take all these supplements. The damage that the medications did to my body and my mind made me feel obsessive about my health. I felt that it was the only thing I could do, to do everything that I could to regain my health. So I was pretty much focused on that.
Bit by bit I began to get stronger and healthier. Eventually I started to eat normally again. For a while I wouldn’t eat around other people because it was like I have to eat certain things, and I can’t eat certain things. So I would just buy my food and eat by myself. That was really isolating, but it was somehow grounding. It was my way of controlling my life.
Eventually I started to move out of that. That was a big thing, being able to eat around other people again. There were years when I would just not eat around other people. I felt like other people had the privilege to eat whatever they wanted and I didn’t. That was too upsetting to me.
When I re-entered society, it was scary. I didn’t know how to relate to people. I didn’t know how to relate with my sexuality. I didn’t even have sexuality for two years. Just very basic things about relating with people had become totally foreign to me. I had to totally reintegrate myself into the world.
Freedom Center was really the first step. The meetings were the only place that I felt that I could go, that I could leave my house and do something where I would be around other people, and didn’t feel like I had this huge secret that no one else knew. It’s still a secret. There are still friends who don’t know what I’ve been through, and I always don’t feel safe telling certain people, especially my older friends. I’ve reconnected now with my older friends, but I also felt this big gulf, like I had lost all of my friends from the past.
After a while, I had started to do more with Freedom Center. I was leading a writing group with a friend I met in the meetings. As I started to bring my poetry out into the world – that was another bridge – I started to meet different people. Now I have a lot of different friends and connections of people who do and don’t have to do with the Freedom Center. It’s becoming more integrated into my whole life, so it’s starting to be that more of my friends are of my mind set about the system.
I had also self-published some books through grant funding by the Western Mass training consortium. They were some books of poetry from my memoir, and I sold them. One of my poetry books, the first poetry book I self-published, sold really well. It was so excited. I sold 60 copies right away at 16 dollars apiece. I was also doing more poetry readings in public.
I did a yoga teacher training. It was a spiritual inspiration I had. I had been doing yoga since I was fifteen or sixteen. The training was really intense. Even though by that time I had felt that I had regained my health pretty much, I still felt I sense that people generally my age, who hadn’t been through a serious illness, or anything that I had been through, have a certain sense of durability, whereas I felt a sense of fragility. I felt strong and healthy but also that I needed to rest.
I was hired as a substitute for the Freedom Center yoga class, and then I started a second weekly class. So the Freedom Center now has two free weekly yoga classes, and I get paid from the grant funding that Freedom Center gets. I got other jobs teaching yoga in the past year, so that’s been really special. I’ve gotten jobs in alternative mental health communities, which is nice because it’s not about getting your body into a certain position. It’s about stress reduction, self-care and awareness, spirituality, love and healing. It’s pretty gentle because some of the people that come to my classes are on a lot of medications, or not very healthy, or need more slow-paced gentle classes.
Now that I teach yoga several days a week, I end up doing it every day. My body is really balanced now. It balances my brain. It balances both sides of my body. Teaching yoga also helps me to reduce stress a lot. I bring a very loving and spiritual presence to class. Being able to present that to others helps me to arouse that presence in myself. It inspires me to be more open and have a more healing and loving attitude and to bring that energy into a space.
Right now I’m also seeing a family system’s coach. I’m still really working stuff through with my family. My parents were divorced when I was eight. My childhood was really stressful. A lot of times when people get labeled mentally ill or incompetent in some way, it often has to do with their family. Oftentimes my family coach is teaching me that families use one member, as the incompetent mentally ill one. They project a lot of things onto that one person. So I’m really working a lot right now on changing the way that I relate to my family. It’s really been challenging, but I’ve seen some results. I have a really amazing coach on this.
Freedom Center has been extremely valuable to me of having this community of like-minded people in different way. It’s an appealing community because everything we do focuses on holistic healing and we can share the same sense of humor about the system itself. There are people there who just accept and admire me for just who I am, and what I’ve been through, and what I share with the world. There are people there who I seriously, deeply respect and admire. I can’t even express how much I admire Will Hall and Oryx Cohen for the work that they’ve done in creating the Freedom Center.
(Editor’s Note: In 2018 she published Freedom from Psychiatric Drugs. Her story was recorded 8/13/2007 at the MindFreedom International Conference: Creative Revolution: Turning Our Minds Around, at the Wisdom House, near Litchfield, Connecticut, USA.)