Center on Psychiatric Disability and Co-Occurring Medical Conditions

State-of-the-Science Summit on Integrated Health Care

Center on Psychiatric Disability & Co-Occurring Medical Conditions

Recovery of brain and body - Caroline L. Kaufmann

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I have major depressive disorder - psychotic on one occasion - with anxiety; and I have the late-effects of poliomyelitis, sometimes called post-polio syndrome. Polio left me with major paralysis in most of the muscles of my left leg and some spots in my back and hips that don’t work well. Major depression leaves me feeling rotten about myself, the world, and everyone in it - unable to see any value to my life. Of the two, major depression is the more disabling for me. Though both polio and depression can be fatal, I am still alive and have a story to tell about recovery.

I have been in some kind of therapy for almost all my life. I started at about 2 years old for physical therapy and about age 15 for psychiatry. I have had five unsuccessful suicide attempts. Suicidal ideation is a major problem for me. After a while suicide becomes the default idea whenever I am stressed. Susanna Kaysen eloquently described this pattern of thought in Girl Interrupted (1993).

During graduate school, I had a psychiatrist who killed himself – provoking me to anger and despair about the efficacy of treatment. I figured if an able-bodied man with a good job couldn’t come up with a reason to live, treatment was certainly not going to work for me.
I Decided To Fake It.
I had a check list of accomplishments that would indicate a successful life: Marriage, work, and children. Most ideals are actually compromises. Nobel laureate Herbert Simon coined the term “satisficing” to describe what I was doing. Faced with a number of choices, I selected the ones that met the minimum acceptable requirements. Optimizing life decisions wasn’t realistic for me, I thought.

I chose a career in academics because I was always good at school and thought it would be mostly a “sit-down” job with a flexible schedule – (though I really wanted to be an astronaut – that satisficing thing, again. I married the first able-bodied man who asked me. He turned out to be both abusive and alcoholic (definitely a sub-optimum choice). I finished my Ph.D. at a university a few steps down in rank from where I earned my bachelor’s degree – respectable but not all that difficult to do. I had two healthy sons (no compromise there), and earned a tenured position at a state university – the first woman to do so in my department. Following my checklist for success, I “had it all.” I couldn’t admit to anyone that my husband was basically a drunk and a wife beater.

It was the mid-80 and my university had invited Betty Friedan, famed author of the Feminist Mystique, to visit. I attended a select gathering of faculty for an informal discussion with her. I made a mild, non-incendiary comment. She turned toward me and, in a loud voice, snapped, “You’re depressed!”, and ignored me for the rest of the meeting. Some of you may be of the age to remember Betty Friedan. She was a prominent feminist; some say the founding voice of the women’s movement. And I was “outed” at a professional seminar by one of the leading feminist scholars of my era. My satisficing strategy wasn’t working, and I needed to change.

Shortly after the “Friedan Incident,” I organized a complex escape from my marriage that took me three years to implement. I resigned from the University, moved back to my home town with the kids, and took whatever work I could find as a researcher. I never told anyone why. I preferred to appear naive and stupid rather than abused, and depressed. I chose incompetence over disclosure. Then I Came Out. I made my own decision to “come out” in 1992 – without help from Betty Friedan. Admitting I had a major mental illness came naturally to me. I was active in disability rights and had a physical disability that made disclosure unnecessary. The work I was doing was consistent with my being a consumer, so I really thought it was no big deal to acknowledge my psychiatric diagnosis publically.

For a while, I felt like a celebrity. I know that sounds a little weird to those of us still claiming to be normal, but among disability advocates, extra points are awarded sometimes based on the nature and severity of disability and what one achieves in the face of it. The combination of being professionally adrift, accomplished, and an emotional wreck gave me credibility among a small circle of colleagues looking to revamp the mental health system. But I did not feel I could lay claim to being a consumer because I was always – more or less – functional. I was not poor; and I avoided hospitalization through strong family supports and a very forgiving work environment. The support groups I started where filled with people whose lives were very different from mine. I limped, had huge bouts of fatigue, couldn’t think straight, and wanted to die; but other than that I was - you know - “Okay”.

It was a game changer to finally admit that I was mentally ill. I want to put that term in quotation marks because it does so little to explain how I feel as a person with major depressive disorder. A better term is psychiatric disability.I like that.
Then I Crashed and Burned.
In 1995, I had a “nervous breakdown.” This wasn’t my first, but it was the one I could not hide. I had a job at a first-ranked university, responsible for two large federal research projects. When I slipped up, a lot of people noticed.

The problem was that – unlike polio – I had no basic understanding of what was happening to me. My career was in ruins. I couldn’t think coherently. The smallest decisions – which I focused on in greater detail than needed – were impossible. I was making mistakes in reports and publications. I thought editors would check for these things, but they didn’t; and I had to publish a correction to one peer-reviewed paper. I dodged interactions with colleagues – even my boss. I refused to answer the phone, open my office door. I cut myself off professionally and personally from anyone who could have helped me.

What was going on? I was in therapy, but my diagnosis was “adjustment disorder with depressed mood.” This was more than an adjustment disorder. This was full-blown depression, and I was still faking normal. I started taking anti-depressants, upping the dosage gradually, but the cognitive problems remained. I was suicidal and had a plan – one I didn’t activate because I knew it would destroy my children’s lives. What was left of my academic career was a tattered, embarrassing mess. So, clearly I needed a new plan. I needed to heal … to recover.

The Recovery Process in Physical and Psychiatric Rehabilitation Are Different

It is easier for me to stay in recovery from poliomyelitis than from major depression. I contracted polio as a toddler, and I understand what that infection did to my body. There are easy metaphors for the muscles and nerves that control physical movements. Recovery in the face of paralytic polio takes years, with ongoing check-ups and rehabilitation after any injury. People living with the late effects of polio are vulnerable, but they are functional.

What is the metaphor of psychiatric disability? A chemical imbalance? In comparison to post-polio, my experience in recovery from major depression is opaque. By that I mean I do not “see” what is going on with me. I feel correct in my negative thinking, but I am not functional when I’m depressed. Imagine the explanations for polio in the absence of any understanding of viral infection and anatomy of the neuro-muscular system? I would panic! I don’t because I know what is going on and how to manage these bouts of fatigue and pain. I don’t blame myself. It wasn’t my fault that I got polio. I slow down a bit, rest, do very light yoga (or “sloga” as I’ve come to call it). Within about six weeks, I feel better.

Recovery from psychiatric disability is hard to understand because I know so little about my brain and how it relates to my behavior. In many ways, I think it is my fault. Clever as I am, I can’t think my way out of the mess of major depression. As for polio, I know how my muscles respond to physical exertion. But how does my brain respond when I am under stress? How does suicide become my default course of action? Are there neural pathways in the brain associated with rumination? If I had answers to any of these questions, maybe I could figure out what best to do?

By experience, trial and error, I’ve settled on cognitive behavioral therapy (CBT) and psychotropic drugs to handle major depression; but I think I could deal with the experience better if I could visualize what in my brain I am trying to strengthen or reconstruct. Is it all “cognitive?” When I am feeling that life is not worth living, where does that idea come from? All living things want to live. Why would a self-aware being want to die? I know that drugs help control the symptoms, but these drugs are like a chemical bath. They wash over my whole body and brain with no fine distinctions as to parts. It is like taking aspirin for chest pain with limited knowledge of the cardiovascular system. What if it’s a heart attack? In psychosocial rehabilitation, I am lured into treating my symptoms without understanding why or how they occur. There are basic questions about how my brain functions to which I have no answers.

I am eager to see the science of psychosocial rehabilitation evolve so that knowledge of neurophysiology actually improves services. For now, I am learning about recovery under a blanket of ignorance about how my brain and body work to maintain my health.
I Have One Closing Point.
The system of community supports for people with psychiatric disabilities is changing. The vision conjured by the 1964 Mental Health Act has not materialized. Instead, we have created a consumer-driven model that assumes individual choice and an open market for services. This model works for those of us in the private system – with good insurance, stable housing, and economic security. It doesn’t fit well for those among us who lose or never had those resources. When I contracted polio, I was part of a cohort of children whose health care was subsidized by a national campaign to eradicate the disease – FDR’s “March of Dimes.” Do we have any analogies to that in psychiatric rehabilitation? The NIMH has launched the Brain Initiative. NAMI has its “Campaign for the Brain.” The issue here is how to support the science that informs psychiatry and the systems of rehabilitation that support people living with psychiatric disabilities. So far, we are cutting funding for community supports and increasing funding for basic science. That is a fool’s choice. My goal is to fan both fires at the same time: Let’s make discoveries in neuropsychiatry AND community-based supports for people living with psychiatric disabilities. In the end, I am a whole person, and my brain is part of my body.
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