Showing posts with label reeds and water. Show all posts
Showing posts with label reeds and water. Show all posts

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.

Personal record

Robyn and I went to Walker's Invitational Cross Country Meet yesterday. Walker's a junior varsity guy, but the varsity team is ranked number on in the state. It was easy to see why. In a field of 300 or so ripped young men, Prairie runners finished in the top 30 or 35. They won the meet, which by all accounts was very fast. Walker, who has grown legs over the summer, knocked a minute and a half off his personal record for this event. His goal was a sub-20 time and he finished at 18:51. He was surprised, and in true cross-country tradition, vomited nicely at the finish line.

Cross country is a great sport. The kids seem more laid back and are great sports for the most part. I'm still amused by the long lines of young men and women, in grand physical condition, lining up at the porta-potties for their pre-game dumps. Wouldn't want to get to mile eight and have to poop down your own leg. These ordinarily self-conscious young men and women all stand in line together as though they are in the return line at Best Buy. I like that the kids compete against their own previous times (at least on our team) and encourage each other, regardless of how they finish. Walker finished well but did not medal or (I think) score for the team (which took second), but his friends were excited at the dramatic improvement in his time. They all embrace suffering and pain and personal accomplishment. Then, of course, they come home and neglect taking out the garbage. Some generalization of values will surely ensue at some point in time.

I made the final arrangements to move Mom into what seems like a very good nursing facility last week. As I finished the arrangements Friday afternoon, I felt a wave of sadness. When we moved Mom into her current facility - Memory Care - she asked "How long will I have to stay here?" I lied. "I don't know, Mom." The answer, it turns out, is "until you need a nursing home."

Choosing a home can be depressing, to say the least. My point of view has certainly changed, though. I remember being appalled when I visited my Aunt Joan at all the sleeping folks seemingly abandoned in their chairs and in hallways, folks sitting gazing off into nowhere, or sitting in front of televisions in congregate areas noticing little or nothing. I didn't want to think about Mom being one of those people. She is, now, of course, one of those people. They are doing the best they can with what remains of their gray matter, conversing or responding with great effort and then resting, nodding off, gathering wool until called upon to interact again, with great effort. We have found a clean, quiet place full of people who seem kind and knowlegable. Mom will have a room-mate who, like her, needs a quiet place, a radio, some classical music.

Although my first instinct in the face of these things is to purchase and consume expensive and tasty single malt scotch, I have not done so. Nor have I made the pitcher of martinis for which the situation seems to call. I drove down in the rain and saw a client, a woman of some significant insight whose lot seems to be improving. I came home and talked with my daughter who, bored and with a very sore ankle, came home for the night at my invitation. I vacuumed up a lot of puppy hair. It's falling off Maggie in great patches, carpeting our rugs with mismatched fiber. I watched our over-rated football team fall prey to hungry underdogs. Beware the hungry underdog.

I often introduce my young clients to the concept of struggle. Most of them have had to struggle mightily. They see their struggle as an exception. Their future is filled with satisfaction, to which they are no doubt entitled, punctuated by occasional hard times, which they don't really deserve. Why do bad things happen to good people?

I try to tell them that struggle is the known constant. Our lives are full of effort to understand, to cope, hoping to overcome. We struggle for things we believe in, for our truths, our values, for the people and ideas we love, or we struggle to no end, for no palpable reason, to pretend that things are in fact "okay." One way or another, day after day, we push the rock up the hill. I encourage my young charges to find passion, to think about what they believe, to pursue what fascinates them. Struggling for something one believes in, struggling to match our erratic behavior to something resembling our personal values, feels to me more worthwhile, even if I often fail, than struggling for what feels like no good reason.

This is a fine recipe, but the dish is hard to execute. One can blithely turn up the volume on one's own hypocrisy, in front of one or more witnesses, and not see the clarity of one's own delusion. Age does not improve us in this respect. Awareness is a fleeting thing - often appearing only in the rear view mirror, on the embarrassing video tape of memory - in the remonstrations of a close friend, a son, a spouse.

We make coffee and watch the sun rise. We make plans for the day. We think back on what's done, think forward toward what we intend.

Tomorrow, moving day, is all arranged. Mom's current care givers have cut her hair stylishly short and will dress her neatly. Hospice has given me the name of a service which specializes in the smooth transport of the elderly in wheelchairs. Mom's next care givers, specialized in the "next level" of her need, await her arrival. They are prepared to get to know her, to find the spark of preference and desire left between her befuddled and tortured neurons and to make her comfortable.

All I want is a room somewhere
Far away from the cold night air
With one enormous chair . . . .