Good intentions

This morning I had one of those dreams half between sleeping and waking, the kind that’s even more than usual a mishmash of stuff floating around in my brain, from trivia about a friend who’s just seen his first kangaroo to conference scenes dredged up by a new conference to come.

At some point the dream shifted venue to something like a country house I’d visited recently, and the action involved Barbara’s parents leaving, after visiting for just an hour or so on their way to somewhere else in their vacation. From the dream I remember a conversation with Barb’s dad about some project involving digging out on the lawn, then noting their new-looking suv pulling a recreational trailer. I asked if it was a hybrid and he gave some long explanation of the vehicle, during which I realized that I was a little desperate for them not to leave me alone with Barbara.

Her mom decided she needed to go to the bathroom, her dad sat on the porch, and I worried incoherent dream worries that they were going to leave without saying goodbye to Barbara, that their leaving would trigger Barb into one of her paranoid spirals, and that I’d be alone with that. I should say here that in real life I did not seek to involve Barb’s parents in her situation, for a variety of reasons that seemed good to me at the time, and although they had reason to think she was in distress (including that they’d seen this before with other children) they did not seek to involve themselves. We all had good intentions, I think.

When they had gone, dream Barbara appeared. She was literally glowing with intensity – she was a luminously intense person in real life – and announced that she had just received a visitation from some imaginary grandma of mine with a goofy name I don’t remember, something like Granny Dandelion. This person had delivered some good news about herself, but Barb was fretting because she couldn’t remember what it was. I touched her face and said, “But it was good news, right?” Her face cleared, and she was soothed. And I looked into her momentarily happy eyes and began to weep for the happy Barbara who had been, and who was now lost in her own worst nightmares. I woke up weeping.

It’s been a long time now, but I still feel so sad for Barbara. She had such good intentions, but she had no idea how to soothe herself. Or rather, all of her comforts were external. She referred to me sometimes as ‘her blankie’, and once I realized this was not a charming compliment but a trap, a real statement of my role for her as a dedicated comfort device, I tried to wean her from me and show her how to soothe herself. She refused to learn or even to see a problem and was angry at the whole project, just like a child whose blankie is being removed.

The 33% solution

When I was doing a whole lot of reading to try to figure out how to help and get help for my wife, I noticed something odd that I didn’t know quite what to do with. There are a lot of theories and approaches to severe mental illness, and people who will claim that each of them really work wonders. What I noticed is that reported success rates were often around 33% (a third of patients). I also noticed that eventual recovery rates for untreated patients (or treated patients who went through relapse cycles and stopped treatment, such as John Nash, the “beautiful mind” guy) were also about 33%.

So basically, whatever you try, including nothing, works about a third of the time. It’s not clear if this is always the same people (a third of people will recover and two thirds won’t no matter what you do), or if different people respond to different treatments and the accidents of access even out around 33%.

This is not even getting into what counts as “success” in treatment. I was sometimes shocked at what researchers were willing to call success, but perhaps I expected too much. I’m neither a statistician nor a medical researcher.

33% is way better than 0%, of course, but what can be pretty confusing is which approach to take, how long to give it before trying something else, and whether in any given case something that works ‘a little’ ends up getting in the way of something else that would work ‘a lot’. Assuming, of course, you can get your sweetie into treatment in the first place, which I couldn’t, or that they’re willing to sit still for all the fiddling around with different approaches.

Rubble

Chadwick suggests that calling people who are deluding back to more ordered forms of thinking through a process of logical investigation of their thoughts is a good idea. This is in contrast to mainstream therapeutics, in which the first piece of advice is to go easy on challenging the delusion; and the “brief therapists,” who argue for strategic acceptance of the delusion as a way to sidestep it and get to the relational double-binds it’s expressing.

Taking seriously people’s ability to think for themselves is my policy. So well before I read Chadwick, I questioned Barbara’s perceptions that she was being comprehensively surveilled; specifically, I asked what her evidence was. Well, as usual she had a negative interpretation bias about the behavior of others (her ‘happy’ mode was to be oblivious of others or to idealize them), so her evidence was that people were acting weird toward her in ways that could only possibly be explained by them knowing things they couldn’t know without bugging her office and our house.

I proposed alternative interpretations, which had been something of a pattern in our relationship. I now see that she never actually learned how to produce those other interpretations herself, because that was my role; and they were then easily dismissed as me just being optimistic. I pointed out that violating her rights in this way would require the participation of lots of people acting badly. She simply expanded the scope of the delusion to cover, eventually, everyone on the planet. The interpretation game was a loser from way back for us.

Logically enough, the question came down to the physical evidence of surveillance: cameras, microphones, what have you. Unfortunately we had a friend at the time who was excited about how cameras could be embedded in eyeglasses and whatnot; he lent a superficial aura of credibility to the possible invisible ubiquity of surveillance. Barbara flew to New York to have an expert check some suspicious objects from our house. They were suspicious chiefly because they had wires and she didn’t know how they worked. Not surprisingly, he produced no conclusive finding but gave the impression that further (expensive) testing would be desirable.

Barbara began to punch through our walls and drill holes in our floors in search of ‘evidence’. Right around in here I fully grasped the scale of our problem. My focus shifted to de-escalating conflict in our relationship in order to allow her to ‘come off the boil’ and back away from her more extreme hypotheses, which were clearly defenses against my incredulity.

I spent the last five miles of my commute home from work visualizing our house as a smoking pile of rubble so that I could face whatever demolition she had actually performed that day with calm.

Getting treatment?

Barbara knew there was something terribly wrong. But her paranoia insulated her from thinking that something was wrong with her. As her feelings of disorder and anxiety got stronger (they came and went in waves) she felt them in her body. But because she’d put all of her eggs in the basket of the reliability of her own perceptions, she ascribed these feelings to manipulations being carried out by her tormentors. Everything was coming from outside.

On several occasions she began to see a therapist. The first was when she went on disability from work after begging them to stop surveilling her. She did not confide in the therapist, who predictably defaulted to a catch-all diagnosis of depression. Barbara liked the Zoloft until she decided it had been tampered with. Later, working from within her delusion I was able to convince her to see a cognitive-behavioralist to get strategies for coping with the stress of being constantly surveilled. Barbara was instantly impressed with the efficacy of the self-training ‘homework’ she received. But somewhere around the third or fourth visit the therapist said something that led Barbara to believe that she was being diagnosed. Since diagnosis meant that the problem was with her, and not the world, she broke off the treatment.

I visibly began therapy myself, to try to legitimate it for her. It was nice to have someone to talk to; my therapist was attentive, patient and intelligent. But he did not offer any advice on how to help Barbara, and she was not moved to seek help by my example.

Finally, I was able to get us into marital counseling together. Unfortunately the therapist originally recommended was not available and made a secondary referral without knowing the circumstances. Although I knew our relationship was poisonous for reasons I had a hand in creating, Barbara’s deluded state pretty much precluded ordinary couples therapy, so that ended too as soon as she began to doubt the complete support of the therapist.

I attended a NAMI meeting. The presenter reminded me very much of Barbara’s father — a man very certain of his rightness. The model presented there was that the mentally ill are unable to care or think for themselves and must be forced to get and continue treatment if necessary. I am not sure this is wrong, but I was unable to release the relationship with a strong, independent Barbara that I had cherished. Involuntary commitment might have saved her. More likely to me, knowing her, it would have confirmed her worst fears of her own powerlessness and cast me in the role of oppressive authority that had been her father’s. I lacked the courage and/or ruthlessness to take this step.

Local therapists I called and explained the situation to had little to suggest beyond persuasion and involuntary commitment. Some of them admitted that the latter was a desperate strategy with some chance of success but just as likely to create new problems as solve old ones; and that paranoid patients are very difficult to keep in treatment.

My readings in the psychological literature included strong advocates on both sides of involuntary commitment, restraint, and medication. Those in favor argue that the impaired awareness of illness is part of the illness, so that hoping for voluntary treatment is pointless. A motivating concern is horror at the prospect of the loved one’s suicide; any expedient is preferable. These folks tend to have a much rosier view of the wonders of medication than anyone else. On the other extreme is the ‘anti-psychiatry’ movement, who see all such interventions as oppressive violations of the person’s right to think and feel however they want. To them, psychiatric diagnosis is just a fancy way to control people who fall outside a narrow norm. I saw the point in both these views but found their extremism unconvincing.

Two books made me feel especially hopeful for advice on how to get Barbara into treatment without force. Alistair Munro’s Delusional Disorder: Paranoia and Related Illnesses seemed to be right on point; and Munro reports successfully treating many people with delusions. However, he worked with patients with somatic-type delusions, for example the delusion of bugs crawling on the body. Their symptoms do not involve distrust and anger; they come to doctors themselves to be cured. Munro has no advice to offer about getting paranoid patients into treatment, although he thinks his treatment protocol would be effective with them. But this was another problem: no therapist I talked to had read this book or was familiar with its finding that pimozide, an older drug no longer in fashion, was especially effective in such cases. Nor were they willing to change their practices on my inexpert say-so, of course.

The second book I had high hopes for was Paul Chadwick’s Cognitive Therapy for Delusions, Voices and Paranoia. Chadwick writes humanely and delightfully, and is especially inspiring because he has himself recovered from extreme delusions and hallucinations. His therapeutic techniques take the patient’s ability to think seriously. But he has no help to offer on how to get patients into therapy in the first place. In his case, it took getting hit by a bus.

Simplicity and complexity

People who only feel comfortable when things are simple and people who only feel comfortable when things are complex are a very bad match. This one is even more important than the one about what temperature you prefer the bedroom.

Attention surplus disorder

Paranoia is a symptom of hypervigilance under stress. Delusions are attempts to impose order on disordered perceptions and feelings. Paying close attention to possible threats and making sense of our reality are two perfectly normal and healthy things to use our brains for. There is not a clear line that separates normal thinking from disordered thinking, only a big gray area of questionable priorities and interpretations.

Nietzsche said “And if you gaze for long into an abyss, the abyss gazes also into you.” Be careful where and how you focus your attention.

Early detection

By the time my ex-wife began to exhibit what in retrospect were early warning signs of her delusional disorder in 2000, we had been married for about 14 years. I was fully familiar with her tendency to ruminate over what would seem to many of us to be the minor ordinary inconveniences of everyday life. That tendency had waxed and waned throughout our marriage.

Once she became disabled by her thoughts and I began to desperately search for ways to help her, I ran across a very large and optimistic literature and help infrastructure trumpeting the value of early detection in the treatment and even prevention of mental illness. There is abundant evidence that catching the disordered thinking early and aggressively providing care has a tremendous success rate; whereas letting delusions ’set’ is strongly correlated with difficulty in treating them.

And I thought great; thanks a lot. Barbara was a highly successful professional with a strong personality and a big old stubborn streak. She had supreme (indeed, fatal) confidence in the quality of her own perceptions, thinking and coping strategies. These were all things I really liked and admired about her. I was the audience of choice for the ruminations, which I did not like and admire, but any suggestion that there might be better ways to process emotions was met with proud dismissal as an intrusion on her autonomy.

By the time it became apparent that something other than the usual cycle was happening we were already past the window of early detection. Combined with 14 years of successful assertion of her autonomy in our relationship, and some serious disincentives to admitting weakness in her upbringing, there just wasn’t much chance of getting her into therapy ‘early’; and sure enough, later when the delusion was fully operational it was virtually impossible.

Here is an example of knowledge that isn’t very helpful.