Perhaps some hope

There's a fascinating article in this month's Harper's about "prodromal" treatment of schizophrenics. I can see your eyes drifting away, disappointed that I'm not ranting about Thanksgiving yet. I'm sure I will yet rant. Be patient.

The article focuses on treatment of schizophrenia while symptoms are just developing. This requires that psychiatrists listen to their patients with well tuned ear, since early pre-schizophrenic thought is a very introverted process. People ponder whether solid objects are really solid, they focus intently on religious or relational themes, latching onto symbolism or ritual to try to make sense of things that used to be certain. I knew a guy who spent a lot of time wondering whether or not his arms and legs really existed. This can seem "funny" but it's not. Schizophrenia causes the physical deterioration of the brain over time - patients' brain scans reveal widening fissures, significant measurable deterioration over time.

My father and his father both suffered from paranoid schizophrenia. Dad's most profound worry was that I too would succumb. My mission in life for a period of time involved the absence of this disease. Accomplishing the absence of something can be a confusing mission. To this end, my father and I had a number of fascinating conversations. We read R.D. Laing, a British psychiatrist who advanced a "behavioral" theory of the evolution of schizophrenia, which is now largely disproven. I was somewhat attached to the behavioral theory, given my dubious inheritance, but Dad didn't buy it.

What Laing did that was brilliant was to record a great number of interviews with individual patients and their families, sometimes scripting family interactions and interviews. This provided Dad and I with a look inside other heads than our own, gave us reference points for comparing our internal states. We were particularly interested in comparing my mental status at the time (an early 20's person) with the mind-set my father had before he had his first full blown episode, nervous breakdown, violent outburst, at the age of 27. Dad's behavior when psychotic was violent and dangerous, and it offered no basis for comparison, no way for me to relate or compare. I've just never thought about grabbing an axe, heading into my wife's bedroom, and accusing her of infidelity.

Dad talked to me about feeling a certain hollowness, emptiness, an absence of self. He was a good student, a talented writer, a decorated veteran and a very good teacher. His accomplishments always seemed hollow to Dad, as though he were playing a role, acting a part, rather than being genuinely present. He talked about no knowing how to love, or to trust the love of others, because of that same hollowness. He was preoccupied with somehow being a "success" in life but had very rigid and unrealistic expectations of what that would look like. He worried endlessly about interactions with other people, what they might have meant, what he should have said. He was a jealous lover, afraid of abandonment. How can you trust or understand others if you have no internal frame of reference? You're left trying to construct theories that somehow match the external world with your increasingly confusing thoughts.

Before Dad was a "mental patient" he suffered for years in this prior state, uncomfortable and uncertain, but not delusional or particularly unstable. At some point stress put him over the edge and he spent a good deal of the rest of his life teetering there, struggling with symptoms he recognized but could not conquer.

Psychiatrists in clinics that use the Prodromal treatment model are intervening with patients before the "big snap," putting them on low doses of the newer antipsychotic medications, allowing them the time space to regain their balance without experiencing the full blown agony of a psychotic break. The editors of the DSM-V, which will be published within the next couple years, are working to quantify this pre-schizophrenic state and define a diagnosis that will make it more recognizable.

It's early to say whether the patients at these clinics will avoid full blown schizophrenia. It's hard to stay on medication. Great stressors may still trigger psychosis. It doesn't sound as though there are definitive studies yet. The patient anecdotes in the article, however, seem to indicate that patients feel more control over their lives and are functioning pretty well.

Dad had fourteen years, corresponding to my later teens and early adulthood, when he was relatively symptom free. He was eccentric and occasionally cantankerous, but he was an active, involved part of our family. He was a wonderful father to me and a great support as I tried to figure out how to be an adult. He learned how to love us, to feel it, and to be loved in return. He has told me several time that this was his proudest accomplishment.

One day, during the time when I was living alone after moving out of the home I shared with my former wife, Nancy, he called me and in a strangely familiar voice asked me if "I had been hearing things about him." His symptoms were back and he could no longer internalize them. I assured him that I was not hearing anything and begged him to contact his doctor, which he did. What ensued was a fruitless painful struggle to find something that worked for him. The meds that bought him 14 years betrayed him, leaving him with nothing but tremors as a side effect. Dad submitted to electric shock treatments, culminating in a particularly barbaric process called "maintenance ECTs" which involved ongoing regular shock sessions, rather than discrete periods of treatment followed by recovery. ECTs scrambled his thoughts and left him very confused. They did not control his symptoms but no one seemed to have any other ideas. Eventually Dad learned about a new trial medication called Clozapine and got himself included in a study. By then we discovered what we thought were neurological side effects of anti-psychotic drugs were actually the early symptoms of ALS. I'm still convinced that the ECTs weakened his neurological system, making him vulnerable to ALS.

When I close my eyes and call my own name, I can feel myself, inside myself. I am a person, responsible for my actions, taking credit and sometimes blame, loving and being loved. When Dad and I talked, I realized that this was the difference between my father and I. I am present in my own body, a self, a soul, and I can feel this. My father taught me how precious this is.