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!


The Mass Defective said...

Just blog hopping and came across your post about recovery. Having been in and out of psych hospitals 8 times in just over three years now, the line...

"I was treated like a child, and that's exactly how I acted"

particularly hit home for me. That is exactly how they treat you. You're told when you can eat, sleep, watch tv, shower, etc. It's as if they feel that simply because you're mentally ill, you're also mentally retarded.

The psychiatrists take on the role of parent & think they know what is best for you. Even giving out "punishments" to those willing to question their authority with things like prolonging the patient's stay. Given that treatment, it's no wonder we assume the role of the child. It's as if being child-like is a survival skill in order to make it through a hospital stay without becoming even more damaged mentally.

I think you should take a chance and tell your story. It might be something out of your comfort zone, but might also be very liberating in the process.

Good luck,

robin said...

Your courage, strength and hope amazes me. Look at are moving on up in the world which can be cold yet you alway find warmth to lead the way. I am very proud to know you.



I Seek Zen said...

I must congratulate you on your resolve and courage to stand up to a rigid system for mental health patients. And now that you wish to share it with others, is still more commendable.

What touched a deep chord for me is that you have come out of your difficulties using alternative therapies such as spirituality, nutrition, exercise, supplements, and peer support.

I believe that the present day medical profession has to break free from the mould of 'in the know of everything and doing everything in the interest of the patient' to 'An Understanding approach to Taking the Person (patient) along, with care, compassion and empathy'.

wishing you the best for your presentation

ziggy said...

i just wanted to thank you for your words. I have been through the same things. being treated like a child and not being in control of my own money. i have never heard of peer cousneling and would like to find out more about it. i also live in a high-rise and deal with smiliar issues. no privacy is a big issue here.

i love your videos of insprition. you are an amazing person and i wish you the best in your new home.


Anonymous said...

hope you'll follow through with sharing your story on friday!

clearinghouse said...

What a powerful story! I was reading your posts in order, so I saw that you delivered the speech before I read it, amazing.