No matter how beautiful your strategy …

Today was the day of the Meeting of the Minds, the largest mental health conference in Orange County, California. It is an annual conference sponsored by the Mental Health Association, for patients and family (“consumers”), clinicians, and first responders.

This year, we had a table. We arrived at 7am and set up. We were quickly flooded with people making the rounds (memo for next year: bring more literature). By the time of the first session, another member of our chapter had showed up. I went to the session while Joel stayed at the table, just for the first session, he said, but when I got back just before lunch, it turned out that he and the other member had been busy at the table the whole time. I took the table after lunch so they could go to their favorite sessions.

Here is what the talks were like (the ones that I attended).

First session: I went to a panel discussion on Recovery, with the panel coming from a local Wellness Center. The session unfortunately started late, as some people were held up by unexpected traffic, but we did get to hear all four speakers. The first two speakers had suffered horrific child abuse, and then grown up to struggle with mental illness. The second two had come from more supportive families, but faced other troubles and, again, mental illness. But whatever their different paths, a common theme was that recovery involved (besides meds) the support of others, and then giving back that support to others in turn. Some quotes from the last speaker, just for an example:

Instead of praying every day to God for my health, I prayed for my death. What turned it around was NAMI…. I could believe in people the way that people believed in me…. four years sober … believe in people who have mental illness.

Second session: Two psychiatrists from the John Henry Foundation spoke about “Schizophrenia: Cognitive Testing to Enhance Diagnostic and Treatment Options.” “An ab workout for your brain.” Schizophrenia involves positive systems (delusions and hallucinations), and negative symptoms (flat affect and poverty of thought), but also problems in cognition: processing of information, flexible thinking, and memory. There are medications for positive symptoms, and even some medications for negative symptoms, for for cognitive deficits, the speakers said, you need something else. The John Henry Foundation uses cognitive testing to evaluate people’s abilities in seven domains: Processing Speed, Attention, Working Memory, Verbal Learning, Visual Learning, Problem Solving, and Social Cognition. Once your weak areas are identified, you can build them through simple cognitive exercises, done daily. We got taken through some games that tested us in each area. (I appear to be way better at processing speed and working memory than at visual memory.) These exercises can be useful not just for people with schizophrenia but for anyone. Even neurotypical people can use them to build their weak areas, and people with other DSM diagnoses, such as ADD or borderline personality disorder, can use them (for example, exercises that help with attention for people with ADD, and meditation or exercises that help with emotional gating for people with borderline personality disorder).

As I didn’t go to the afternoon session, the final talk I heard was the keynote address right after lunch, “Dream with your Eyes Open,” by Eric Arauz, who went from the childhood trauma of seeing his family unravel when his father became mentally ill, to repeating his father’s mental illness, to, unlike his father, finding his way to recovery. Now he is the president of the Trauma Institute of New Jersey, and also an impressive public speaker, going by his keynote address. I got a copy of his book for our chapter, which I’ll read and hope to review later. My title comes from a line in his talk that struck me: “No matter how beautiful your strategy, you have to eventually look at the outcomes.” For Arauz, that outcome involved moving from what he calls a “Chaos Narrative: No Map or Destination” to one that rewrote his story in a more positive way.

 

Jargon

Maybe we are so accustomed to familiar jargon, we don’t recognize symptoms if they are described in other ways.

I was having some symptoms. I have been doing well for a long time and they frightened me. I was hearing my voice (not a hallucination) but it was repeating the same words over and over. Nothing scary, more like I was rehearsing lines.

I was also starting to mumble the words I was saying. I found that listening to music was good because I started saying the song lyrics and that was better.

I would try to explain this to friends, hoping they would sympathize, and maybe give me some tips to deal with it. Instead they would say things like, “Oh, I’ve done that before” and shrug it off like it was no big deal or “Maybe you are talking to yourself because you are lonely”.

Instead of helping I ended up frustrated, leaving wanting to bang my head against a wall. It was hard. I knew they were trying to be helpful and maybe normalize my experience, but I found it invalidating.

And the more anxious I would get, the worse the symptoms would get, the more anxious I would get and it snowballed. My psychiatrist seemed to understand what I meant and made some changes to my medication. Now, it is getting better and I am getting calmer and it gets better and the snowball melts.

Recently I saw another friend. I told her I hadn’t been doing well, some thoughts. She said “racing thoughts?” I thought, that is the closest thing to what I am trying to describe, so I said “yes”. Finally I found a friend who could somewhat understand.