“I didn’t get better because of anything that the clinicians did for me. I got better because I surrounded myself by people who showed that they cared about me who got me laughing again.”
Contact info: private
Currently doing: Donita is directing the Renaissance Center in Portland, Oregon, a consumer-run drop-in center.
Mental health experience: Inpatient, Outpatient, Psychiatric Drugs, Forced Treatment, Coercive Treatment, Restraints, Solitary Confinement
Psychiatric labels: Depression, Schizophrenia, Obsessive-Compulsive Disorder
Psychiatric drugs taken in the past: Prozac, Haldol, Luvox, Risperdal
Off psychiatric drugs since:
Recovery methods: Peer Support, Family Support, Self-Help, Diet, Exercise
Greatest obstacle: none reported
The first time I actually was hospitalized was when I was 21. I was having a lot of trouble around depression and anxiety. So right after my 21st birthday, I took a lot of aspirin, a lot, and that was the first step into the mental health system.
Then, six months later, I was hospitalized again. This time I was introduced to medications, and I was told this is the way to go and this is the only real way to help me. Well, the medication list grew. First it was just one kind of medication, a couple pills a day, and then they added some and then they added some more.
And they just kept giving me more diagnoses and more medications and I just got in deeper and deeper trouble. I think I was hospitalized 15 times from the age of 21 to the age of about 28. It seemed like if I could go for six months without being hospitalized, that was a big success. Every doctor I saw had a different idea of what was going wrong with me, but nobody really addressed some basic things, like what my diet was like, what my lifestyle was like. One therapist even suggested that I up my medications because he thought I did too many crossword puzzles. But I kept thinking that they knew best.
The worst bout of them overdoing it on medication led me to be crawling around like an animal on the hospital room floor. I was actually in the hospital for a stomach problem, and after I had a bad reaction to some stomach medication, somehow I ended up in the psychiatric unit. I was so heavily dosed on a cocktail of Haldol, Luvox, Risperdal, and a couple of other drugs, that I was toxic. I couldn’t walk, couldn’t control my legs, and couldn’t see–other than hallucinations. I blacked out for two weeks, didn’t know who anybody was. When I started refusing the medications, they strapped me down to the bed. Then I was restrained and given an IV of Haldol, to keep it going. And they just kept it going continuously into my system.
Meanwhile, they’re telling my family that I probably had a brain tumor, and they were gonna check for that. When they realized it wasn’t a brain tumor, they said I must be having my first schizophrenic break. Everyone who knew me was saying: “It’s the medication!” But they wouldn’t listen.
It took my family threatening to go to the Oregon Advocacy Center and some colleagues that happened to be psychiatrists who called on my behalf. Finally, the medications were lowered, everything stopped cold and I came to. And I was released…just like that.
I was still so dazed and so out of it that, not fully understanding what happened, I walked away and didn’t look back. And it’s funny because even then I didn’t question what they did.
It was also proposed to me at one point that maybe they should do brain surgery. They felt that my symptoms were so awful, so deplorable, I must be suffering in such a horrible way, that I should have a lobotomy. But, again, no one asked me what level of suffering I might be having with this.
When I really think back about it, the only level of true suffering I really ever had was at the hands of the people who were treating me, it was even worse than the worst depression. They were pretty bad.
I didn’t question the system itself until I was around 25. I am a pretty slender person naturally, but the doctors started to suggest that I probably had an eating disorder, even though I had no issues around food at all. I just had a real high metabolism. But from then on when I met with a doctor who told me I had an eating disorder, well, I started, of course, to believe them.
And somewhere along the way, I did lose a lot of weight, partly because I was on Prozac. Here I had a really high metabolism and they have me on Prozac. I was on like 120 milligrams of Prozac at one point and just kept losing weight. Then I fed into this eating disorder stuff and really started losing weight. When I was hospitalized for my “eating disorder,” that was the point when I realized they didn’t quite know what they were doing.
About three years ago, I was hospitalized one last time just through the night. It wouldn’t have been that long if I could have gotten out of there. I went in voluntarily. It was that night when I sat there alone in the hospital that I noticed there was no real difference in how I felt about myself and my life sitting there in the hospital as opposed to just being at home. And I realized no one was really doing anything. I realized there was nothing they could do for me that I couldn’t do for myself.
So I spent that night saying, “Ahem…you can excuse me now, I’m done, I’m okay.” I had to argue that point all night and all the next day to get out of the hospital, when it was supposed to be voluntary. But after I got out and I never looked back.
Shortly afterwards, I abandoned the medication. Coincidentally, I have not been hospitalized since, when, before, if I could go even six months without a hospitalization, that was a tremendous feat.
I didn’t get better because of anything that the clinicians did for me. I got better because I surrounded myself by people who showed that they cared about me and who got me laughing again. These were all fellow patients, people had been through it, people who knew what it felt like to feel that depressed.
No one had ever told me I should do things like change my diet and exercise. To get out there when I’m depressed, not to isolate. I started learning these things from people who had gone through it. Now, when I am sort of sinking, instead of reaching up like I used to for help from these Gods–these doctors and therapists and nurses–I realize that I can take charge.
Now I don’t have to lie in bed and think about how miserable I am. I can get up and do something that’s going to get my mind off of those negative thoughts. I still have the same “symptoms” I had before, but they don’t bother me like they used to. And now I don’t have anybody telling me that what I’m doing or feeling is wrong, bad, or uncomfortable.
I’m lucky enough now to have started a consumer-run drop-in/employment/education program called Renaissance, for people who have gone through what I have gone through. I encourage people who distrust the mental health system to come into this program. We have available to people the chance to come in and say, “I don’t want to be on medication,” and that’s fine. It’s their life and that’s how we do it.
So my work is very powerful and one of the powerful things is that I’m now able to hire people who have always wanted to be on the other side. I find it absolutely rewarding that I’m on the other side now and able to have some influence over the doctors, therapists and others who are providing these services.
I recognize that there are some people that view me as a traitor and a sell-out for attaching myself to a system that has done so many wrongs. But what I want to do is to create a new system that does more right than wrong. What I want to do is create a system that’s primarily run by people who have gone through it themselves. And I never, ever want to embrace that traditional medical model that did so much damage to me over the years.
I do want to say that although I have a lot of bad things to say about what happened to me, I had some great people that came along that were unbelievably helpful as well. They were just caught up in a system that is used to doing things one way and when you’re caught up in a system like that, it’s really hard. I recognize there are people who broke some rules for me along the way and I thank them for that.
Actually, in a lot of ways, I am very lucky. I don’t regret much of anything that happened in my life, even the horrible things that happened over the years. I don’t think that there is any value in regret. I think there’s a lot of value in what I’ve experienced because I’ve now learned to do things a different way in my life.
Interviewer’s Comments: Donita is an amazingly insightful, humorous, personable woman who has gained much wisdom from her often horrific experiences in the mental health system. As the director of Renaissance, she seems to enjoy and even savor every interaction she has with her employees and clients, who are also fellow consumers and survivors.