One evening last week, in an effort to be more of a joiner (and for the material, naturally!) I headed to a church for the monthly parents’ meeting of the local NAMI chapter. The turnout was impressive and as people came in and sat down there was a lot of joking and general bonhomie. Hello, I thought, these people don’t seem to fit my image of the stereotypical NAMI members as sad, depressed, and blaming. This is great. We introduced ourselves to each other as we sat in chairs forming a circle.
The circle got bigger as more people arrived. There must have been at least twenty five parents in attendance. The leader for the evening had us read aloud from handouts the 12 principles of support, guidance on how we should conduct ourselves during the meeting, how we are should view mental illness, our loved ones, and each other. We see the individual first, not the illness, we are not to judge others, we embrace humor as healthy, etc.
Before beginning, we were asked to accept these principles of support as the basis for what goes on in the meeting. I asked if we had to support every principle, which got chuckles, but no answer. I did had a problem with Principle no. 2 We recognize that mental illnesses are brain disorders. Wanting to be more of a joiner, I raised my hand along with the rest of them as a show of general support for the principles.
Each of us then had two minutes to introduce ourselves and our situation. On the surface, the parents there were just like me in the sense that they were more or less my age (old and gray) and many expressed similar views to my own in that they were frustrated with years of psychiatric help, multiple drugs tried and none working. They didn’t like the drugs and several of the attendees said that their relative was on no drugs and they were more or less fine with that. These were not the NAMI parents of years gone by who put medication front and center of any treatment. I kind of expected that medication was no longer the be all and end all of the NAMI, and yet, that pesky Principle no. 2 mentions “brain” and “brain” distracts people from really digging into what’s going on with their “loved one” in favor of leaving it to the experts to befuddle us.
Then the laughing stopped and the atmosphere in the room quickly got serious. Each parent had a horror story to recount about the loved one. They spoke of multiple incarcerations and addictions, being Baker acted, being forced to raise the loved ones’ children, not knowing where the loved one was, the loved one was involved with a loser, had gone on a buying spree, you name it, the loved one had done it. One woman was particularly down on her college age daughter and became more dramatic and stridently closed to well meaning suggestions as the meeting went on. I figure that at least 11 principles were being violated that night, not the least of which was We aim to do better. Sweetie, I’m thinking, maybe if you calmed down and stopped adding fuel to the fire with your daughter you’d get a better result. In other words, I was flirting with violating Principle No. 10: We won’t judge anyone’s pain as less than our own. Oh, heck, I was judging her and kind of enjoying myself by doing so. If she would only just shut up and stop using everyone else’s story as a segue back to her own. Someone finally ventured to offer her a practical suggestion about an administrative problem she was having, and Strident Mother was having none of it. I wisely kept my mouth shut and offered no suggestions. Surely we were all there to learn?
There were many of us at the meeting who were first timers. As the litany of complaints about the loved ones began to pile up, I wondered how the newbies were faring. Not a very optimistic picture was being painted of the chances that the loved one would return to normal any time soon. I’ve been around that block a few times, so it didn’t bother me, but what’s a newcomer to a mental health diagnosis to think? Nonetheless I got sucked in, too. Nobody that night spoke well of the local psychiatric help community, and our particular behavioral health unit’s name came up on a few occasions during the round robin. I began to feel sick and apprehensive about Chris’s upcoming appointment with the psychiatrist.
Then it was my turn to speak. I said I had a 34 year old son and we were both new to the American health system. I briefly said that Chris was getting off his medication and was enjoying being enrolled in a program aimed at future employment. Not wanting to appear too Pollyanna-ish, I felt obliged to throw my lot in with the rest of them and say something that showed that my situation wasn’t so different, so I confided to the group that Chris has never had a job. Something had to worry me!
By the time the disaster stories had been told, it was almost time for the meeting to end. The leader tried to bring us around to a positive note, but by then Strident Mother was talking over her and had her own meeting going on the side.
The problem with NAMI demonstrates to me that the road to hell is paved with good intentions. The idea of group support sounds good on the surface. We find strength in sharing experiences. (Principle no. 5 ) But do we find strength in sharing experiences or are we just stirring up negative feelings towards our loved one and feeling shabbier about ourselves? How does anyone emerge from these family support meetings with a good sense of how to really help our relative?
I’m guessing that’s where the 12 week Family to Family program comes in. If I want to find out about how NAMI really works, and whether the organization is more than just a place for relatives to get together and bitch, I’m going to have to sign up.
I have signed up in the interests of research and new and better material. The next course begins in January.