Kathryn Cohan Who am I now?

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As I look back, I see that I needed structure -- a set of rules -- to order the experience. I could no longer rely on my own internal sense of self to order my life, so I made a framework on which to hang it until I found my way back to being my own "agent" again.

Linton describes the third category, "Tolerant Utilization", as the "ability to fulfill certain roles and duties designated by the non-disabled population as necessary." A very global example of this would be the role persons with disabilities played during the second world war in the United States, when there was a shortage of able-bodied workers and work that needed to be done. I think the concept of "tolerant utilization" has special meaning for persons with mental illness, and includes a number of elements.

Nothing worked. Over the next three years I proceeded to get worse, despite the best prognostic psychosocial indicators. I had a job, I had a support system, I had a home, I had a great deal of theoretical knowledge. I should have been a treatment success. I was an absolute treatment failure.

Once diagnosed, convinced of the veracity of the diagnosis, what purpose did my being serve in culture? Of what use was I to society?

As for me, I decided redemption lay in my ability to be a really good patient. If, as it seemed to me, my entire being had been reduced to a line of code in the Diagnostic and Statistical Manual, then that is what I'd do and I'd do it well.

What do good mental patients do?

We take drugs, tolerate side-effects graciously, evaluate the impact of the drugs on specific symptoms, tolerate side-effects graciously, stay amenable to changes in the drugs we receive, tolerate the side effects graciously, expect that eventually we'll happen upon the right combination of drugs to fix us, and, meanwhile, tolerate the side effects of ineffective drugs graciously.

Why all this grace?

We don't want to cause problems. We NEED from providers. We are completely powerless, we rely on the kindness of paid professionals to help us, we are utterly dependent on others to make us "better."

For some, this is a short phase of living with mental illness. For some, the journey gets stuck in this phase forever. For myself, this was a phase that lasted -- in its active state -- for approximately four years.

I endured side effects that, as I look back, make me shudder with empathy for myself. Migraine headaches, a tremor that made writing with pencil and paper (not to mention carrying a cup of coffee) impossible, weight gain of nearly 70 pounds, mouth sores from dry mouth, muscle stiffness, muscle weakness, tiredness, sleepiness, hyper alertness... you name it, I experienced it. My body went through changes too numerous to mention here, all in the service of finding the "magic bullet"... the right chemical compound that could restore me to my former way of being in the world.

All compounds and combinations failed. In 1995, I gave up hope, was tired of suffering, and decided that I and the people I cared about would be better off if I were dead. I agreed to electro-convulsive therapy in order to obtain a quick discharge from the hospital, so I could act on my plan. The fact that I would be given a treatment first didn't matter to me. Nothing mattered to me. I got shocked.

Surprisingly, I kept getting shocked on an outpatient basis. I sort of lost control of things for a while... collapsed into the arms of the system that claimed it cared for me because I was too tired and too weak to care about anything else. I felt that at least no one could argue with my sincerity... I mean shock is some sort of proof that you are really serious about wanting to get well, isn't it? Well, I hoped so... because my failure to get well on medication didn't reflect well on me as a "good patient". I had become "treatment resistant", meaning -- to me -- that I had failed in the last role left to me.

Maybe, I thought, I'd be good at getting shocked.

I was, in fact, a model shock patient, and used it as my primary treatment for about 22 months in 1996 and 1997. It worked very effectively at relieving distressing symptoms, but created distress in the form of memory changes that have stuck with me to this day. Mine may be an extreme example, but I have raised it here to illustrate a part of the journey to recovery that is not captured elsewhere in the literature.

From an earlier essay:

The car broke down the morning I was scheduled for my ninth treatment, and the psychiatrist who was administering the series told me I could stop for a while - for which I was totally grateful.

I spent the next two months in bed. Looking back, I would definitely describe myself as an invalid. I could not remember how to drive or how to write a check, telephone numbers, people and large parts of my life were just gone. So were my feelings. Frankly, when I look back, I'm amazed that I came back. But I did, just as surely as the folks who were treating me told me I would. But what is really interesting to me about that time is what happened while I seemed to be doing nothing at all. This was the first time in many years that my life was quiet. My parents stepped in and took control of my finances, which resulted in an immediate reduction in chaos. That birthed another of my eventual rules: delegate essential tasks. It was not easy to give over control of my finances, but it has definitely been helpful. It has not been easy to stop working, but for now I must delegate the essential task of earning income to Social Security disability. My kids had never seen me in the condition I was in as I recovered from the initial ECT series, and they were amazingly kind and supportive and considerate. My boyfriend took care of the shopping and other household and vehicle maintenance tasks, so I had a lot of time and a pretty empty mind. It was during that period that I opened the imaginary door between me and the "wolf" of the illness, and invited it in. This would not have been possible if I hadn't attained a period of freedom from the illness, which is the best argument I can think of for trying new treatment if existing treatment isn't working... it just might work.

So there we were for a couple of months. Just me and this wolf that I had done everything in my power to avoid. I was finally able to look at bipolar illness in a period of relative calm, and instead of applying limits to it, I began to ask it about its true nature. I began to find out just what having bipolar disorder means to me. This is the one experience I value over all others with this illness. In my professional life, and in my years as a patient, I have learned volumes about diagnostics, signs and symptoms, neurotransmitters, hormones, cell biology, medications, stressors and the importance of stability. However, it was not until after years of living with the illness unsuccessfully that I realized what was wrong. What was wrong was that all that knowledge - although it empowered me to advocate and encouraged me to be compliant - really had very little to do with how I - Kathryn - experience having the illness in my own unique way. I only found out about how this illness affects me as an individual when I stopped following everybody else's rules for living with it and asked for its help in developing my own. I listened to the "wolf" and it taught me how to get along with it.

This was simultaneously bottom and the beginning of coming to understand my experience in a new way. I cite it as the beginning of my recovery, because all of the tasks I undertook once I awoke were the work of re invention, reframing, and transforming my life to a highly livable one. This was the point in the journey where I began to carve out for myself a unique identity, based on what I needed in order to live a manageable life, a goal which is still -- as I write these words --a work in progress.

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[Who am I now?] [Strategies for Self-Determination] [Talking Points]
[Inner Science] [The Hard Questions] [Provider Psychopathologies]
[Inviting In The Wolf] [Recovering Self Esteem] [The ECT Suite]
[Consumer Satisfaction Surveys] [The Therapeutic Value of Cyberspace]
[The Self-Help Lens] [The Language Barrier] [Waves of Change]

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© 1999, 2000 Kathryn Cohan