Wednesday, November 29, 2006

Friday, November 17, 2006

I did it!!!

Today I read my recovery story downtown at the Department of Human Resources (DHR). A videographer filmed it all, and he'll be making recordings available to everyone at DHR! I should be getting a copy, too (or else I will raise hell).

This was such an empowering experience, and I got a GREAT response! One man asked how long it took me to write my story, and he told me it he thought it was incredible. One or two of the governor's advisors were there, and a bunch of program directors. They were all so positive!

I just couldn't believe all these bureaucrats sat and listened to recovery stories all day long and got something out of each one. They seemed truly interested!

I've always been terrified of public speaking for fear of my mind going blank and the notes not helping. But I learned today that it is TOTALLY OKAY to read your speech word-for-word rather than use notes as guidelines. Last night I read my story to Angel a few times (lol) and then I pulled it out right before speaking. I will never turn down a speaking engagement again. It felt natural and effortless.

In college I flunked speech and dropped out of school altogether because the final speech overwhelmed me to the point of hospitalization.

Kinda ironic.

The positive responses posted on this blog and in private email tipped the scales for me going. If I made any difference whatsoever today, so did you. That's what I call the "ripple effect."

Monday, November 13, 2006

My Recovery Story

I was asked by Carol Coussons, Director of Consumer Relations and Recovery, to tell my recovery story this Friday at the Department of Human Resources. I need to give her an answer tomorrow (Tuesday), so I thought I'd write it here and just see what comes out. If my thoughts are together enough, I may do it. This would be a huge step for me because I tend to shy away from public speaking. But this seems important enough to at least consider, so here goes...

I spent the better part of twenty years in and out of psychiatric hospitals. The average length was three months. The longest admission was a year at Topeka State Hospital in 1984. I've been in private, public, and county hospitals in four different states. I lost count of how many times I was involuntarily committed, as well as how many diagnoses I was given, along with their corresponding treatments. I became institutionalized from being hospitalized so often, and when I wasn't hospitalized, I was in various outpatient day treatment programs.

I was given many messages while in the mental health system. I was taught that I was inferior to the mental health professionals who were in charge of my care, and I became convinced that I was incapable of caring for myself. Psychiatrists were gods who knew more about my brain chemistry than I did. I was told I would always have this illness, regardless of the diagnosis at the moment, and I would be on medications the rest of my life. I became highly dependent on the system for all of my needs. I was treated like a child, and that's exactly how I acted. I was considered too irresponsible to hold down a job, and I've been on Disability my entire adult life. I basically lost my 20s and 30s, a time when my friends were learning how to navigate the world and getting their lives established. Instead, I was learning how to navigate the mental health system and getting myself established in psychiatric hospitals.

The root of my dysfunction, initially, was due to childhood trauma. This was never addressed within the mental health system until many years later in 1988 when I was diagnosed with multiple personalities. Even then, the doctors knew nothing about how to treat me, so I became a guinea pig until I finally found a private therapist who specialized in childhood trauma AND took Medicare. This was after spending 15 years in the mental health system. The childhood traumas were processed the first three years of therapy, and the next seven years were spent processing the traumas that occurred within the hospitals.

The hospitals were not pleasant places, but I knew my way around. I knew all the loopholes, and I knew how to get my way, even if it meant spending a week in seclusion and restraints. I learned from hospital workers that there was something inherently wrong with me. As a result I had very little self confidence and no self esteem.

Living on Disability has been both a blessing and a curse. It's been a blessing because at least I had food to eat and usually a roof over my head. It's been a curse because of the financial constraints imposed by Social Security. You can only make so much money before they take away your check, so where is the incentive to work unless you make more than what is allowed? There are some incentives in place, but you are still trapped in poverty unless you get a decent job that pays enough to live somewhere that isn't a slum or Section 8 housing or a government high-rise, which is where I live now. And it's very hard to find a decent job when your resume is skimpy and full of gaps.

This high-rise is just another extension of institutionalization. The walls and floors are made of concrete and the halls echo from the slightest noise. All the maintenance people have master keys that they use if you don't answer your door fast enough. Inspections are constant and relentless. There's really no sense of "home" when you don't have privacy. The fire alarms go off at least four times a week, and they are always false and ear shattering. It's always noisy here, both inside and out. There are no bathtubs, only showers, no carpeting, and no escape from neighbors who panhandle at your door looking for drug money. The drugs and crime are rampant and frightening. The lease is like a book, and the rules and regulations are impossible to keep up with. I've lived here eight years, the longest I've ever lived anywhere in my life. It's actually the best place I've ever lived.

I haven't wasted my time while on Disability, though. That has been another blessing. I've had the freedom to follow my passion and learn all sorts of things that the average person wouldn't have time for. I learned to play the drums and the flute and draw portraits to sell on the side. I even wrote a book! I have always had a passion for computers, and when the internet became affordable, I taught myself web design.

A few years after moving into this high-rise, my case manager came for a home visit and suggested I use my computer skills to volunteer at Community Friendship, which is a mental health center a half a mile away. So that's what I did, and it was a bit triggering at first because of all the day programs I'd been in before. But this time I was a volunteer, so that made it tolerable. While I was there, I heard about a peer support group they held twice a week, and I decided to give it a try. I found myself looking forward to every meeting, and during that time, I never missed one.

One day in February 2003, I overheard someone talking about a certified peer specialist training that would be held in April. I looked it up on the web and found an application to fill out, so I sent it in along with my $75 registration fee. I had no idea how I would get there because this particular training was being held in Millegeville, nowhere near a Marta train station. But all the logistics worked out and Community Friendship paid for everything. I will always be grateful to them for that.

Before the training began I learned, to my horror, that it would be held at Central State Hospital. I immediately called the CPS Project and asked for my $75 back because there was no way I would be able to tolerate being anywhere near a state hospital for two weeks. But the person I spoke to at the Project talked me into going after all. I still don’t know how she did that. This was a huge step for me, and I was terrified.

The training was probably the most intense and powerful event in my life. I learned that I had hope and that I could recover. I had never thought that was possible, and it took some time even after the training before it began to sink in. I learned that just because I was diagnosed with a mental illness, it didn't necessarily mean what the doctors said it meant. They weren't gods after all. I learned that I am a person first, not a diagnosis. I eventually learned on my own that I could live quite well without a psychiatrist or a case manager or even medication. I learned that I could take care of myself after all, and support is always available through my peers. They understood me. I could talk to them and they actually listened without trying to drug up my problems or advise hospitalization. They let me cry on their shoulders when I needed to, and they could cry on mine. If only I had known of the power of peer support when I was in and out of hospitals. If only peer specialists were there at the hospitals with me. Nothing compares to getting support from people who understand on a level that traditional professionals simply cannot.

If I were to suddenly be in charge of the entire mental health system around the world, my first priority would be to hire peer specialists to work in the hospitals and mental health centers as advocates, program directors, case managers, nurses, doctors, and technicians. Many people who have been diagnosed with a severe mental illness have earned their degrees and certifications. There is no reason why they shouldn't be hired to do the work of professionals who don't have a clue what it's like to live with a diagnosis of mental illness. I would also make sure these peer specialists were paid the salary they deserved, with full benefits. Just imagine the elements of compassion, respect, empathy, and dignity the mental health system would finally acquire if peer specialists were truly utilized as the greatest asset the mental health system could ever hope for.

The next priority would be offering advanced directives for all my peers. And when it comes to treatment, the ideal situation would be presenting an array of options, including holistic alternatives, and practicing informed consent. These do not typically exist in the current system, mostly due to psychiatrists being influenced by the marketing tactics of the drug companies, not to mention the overall practice of coercion and force within the system itself. In my experience, psychiatrists are regarded as the official experts who have little faith in the intelligence and expertise of their patients. How many psychiatrists do you know who offer their patients the PDR to read about the medications being prescribed? Or the DSM? I've read both, but I didn't get them from any psychiatrist. Just because a person is diagnosed with a mental illness does not make them incapable of exploring their options and making decisions about what they ingest into their bodies.

Mental health professionals have their own stigmas toward people living with a mental illness. We are inferior, needy, dependent, and irresponsible, and we don't know what's in our best interest. How could we possibly make our own decisions all by ourselves without any input from them? We need them! And so the same old message continues.

Since my CPS training, my outlook on life has changed immensely. I no longer go into hospitals when I feel overwhelmed or depressed. It's been six years since my last hospitalization, which is a record for me. I no longer take medication, and I haven't had a psychiatrist in years. I use alternative therapies such as spirituality, nutrition, exercise, supplements, and peer support. I now work as a webmaster for the Georgia Mental Health Consumer Network and the CPS Project, and I am finally making enough money to move out of this high-rise. In two weeks I'll be moving into an apartment complex that I could only dream about in the past. I'll have actual carpeting, a deck, a garbage disposal, a pantry, and a bathtub -- all the things most people take for granted. The complex also has a pool, two tennis courts, and a state-of-the-art fitness center. No more government housing! No more slums! No more homelessness! I am slowly but surely getting away from the system altogether.

I still have symptoms, if that's what you want to call them, but now I have coping skills that I never had before. I didn't even know what coping skills were! If I fall into a debilitating depression, I treat myself like royalty. If I get overwhelmed, I cry a lot and then gain perspective. If I cried in the hospital, I'd be given a pill. Now I have spirituality, peer support, and a WRAP plan, which all remind me of the things that work for me personally.

This is my wish and my greatest hope for every single person who has ever been diagnosed with a mental illness. You are not alone, and you can recover!

Sunday, November 12, 2006

Psychiatry is WAY behind!


New York Times

"Psychiatry has made great strides in helping kids manage mental illness, particularly moderate conditions, but the system of diagnosis is still 200 to 300 years behind other branches of medicine."
- DR. E. JANE COSTELLO, a professor of psychiatry at Duke University.

Sunday, November 05, 2006

Legitimacy of Psychiatry

Quote of the Day:

"Ever since the American Psychiatric Association admitted no lab tests exist to diagnose any mental disorder, the entire legitimacy of psychiatry has become questionable. Couple this with the 19 international warnings about how psychiatric drugs have been linked to causing diabetes, liver failure, violence, suicide and sudden death, it becomes apparent that strict constraints against psychiatry must be called for to protect children."

Lawrence Hooper, MD
Health Committee Chairman of the San Jose (CA) Branch


That's what psychiatrists have going for them. No one questions their methods. Those who do are called insane or Scientologists or both. I'm neither, but I have been called both. Many times.

What if everyone except you heard voices that weren't there? The world would be set up to accommodate the lifestyle necessary for hearing voices all the time. It would be a different place altogether, a different planet. Just imagine...

Now imagine yourself taking a little blue pill that causes you to hear voices like everyone else. The pill works great and you are hearing voices! You are now a part of society and you can live a semi-normal life as long as you take this pill every day. Never mind that it causes you to sleep all day and gain weight and see everything blurry. You can hear the voices, and that's all that matters.

So, who gets to decide what really matters?

It all depends on what planet you live on.


I'm not entirely against psychiatry. I'm against force and coercion. I believe in the concept of informed consent, which doesn't exist in psychiatry. The only answers I ever got from a psychiatrist were "this pill will help your depression" or "this pill helps with anger" or "I know the side effects are rough, but if you give it more time, it will start working." How stupid do you think I am, doc? Geesh! Oh, let me check the PDR myself.

Which is what I ended up doing. I read other books, too, many of which were for scholarly professionals. I learned the terminology. I learned how diagnoses were made. I learned that every person I knew could fit into at least one diagnostic category. I learned how easy it was to diagnose anyone.

I would be grateful to psychiatry if they treated me like something more than a label. I would also be grateful if a psychiatrist told me my OPTIONS after diagnosing me with a chronic, incurable mental condition that has STIGMA stamped all over it. But I never heard options. I eventually learned about them on my own through newsletters and conferences run by people who also lived with the STIGMA of mental illness.

This STIGMA is so ingrained in society that even mental health professionals carry it around like a shield of armor as they walk the halls of the insane asylums.

"Okay, the hospitals are cleaner now than what they were in the 40s. The pictures are prettier. No more lobotomies because of the invention of Thorazine. ECT is still used, but the patients don't convulse or break bones. We can't use it as punishment anymore. Oh, but we always have our needles handy.

We'd use a taser, too, if they'd let us. Just give it time..."

Mental patients have always being the lowest on the totem pole in society. This goes way back, since the beginning of time. Some things never change, either. I don't know how many times I've been considered "demon possessed" and had exorcisms done on me. It's really no big deal to be exorcised, truth be told. You just yawn a lot.

The history of the mental health system is a story worse than any horrors you could conjure up on your own. There was a time, a couple hundred years ago, when psychiatrists were inventors of torture devices that would theoretically cause an insane person to "snap out of it." The competition was fierce, too, and the marketing of each item was as relentless as the drug companies marketing today.

The horrors may have changed over time, but the STIGMA lives on. People are afraid of what they don't understand, but what they don't understand is that they, too, could be diagnosed just as easily as the next person. And STIGMA follows you around like a dark shadow.

It's everywhere, even within your own thinking.