It’s 4 AM in Chicago and I can’t get back to sleep. I have a full day ahead of me at the national NAMI convention. Rewind to yesterday ...
I stroll into the convention hotel late morning, after a long and restorative sleep. I’m demonstrating my didgeridoo to someone in the lobby area when I look up and see Nanci Schiman from the Child and Adolescent Bipolar Foundation. Very good way to start the day. It’s going to be old friends reunion day at NAMI for me, as well as making new connections.
The morning is more of nuts and bolts sessions. I attend one on making outreaches to underserved populations. This includes prisoners. Wayne McGuire of NAMI Oklahoma tells us how he got NAMI Connections groups started in the prisons there. It was a laborious process, taking years. These things don’t just happen overnight.
Wayne had a successful career as an assistant professor before being blindsided by his illness and losing everything, then going through his own recovery and reincarnating himself as an advocate. Mental illness makes advocates of all of us. I’m in a room full of doers in a convention full of doers.
I don’t feel like that at our California state caucus. Someone from a local affiliate raises the issue of how a certain portion of NAMI dues goes to State and another portion to National, leaving little left over for the affiliate. Fair enough, I think, but then he and his cohorts keep bitching about it. And bitching.
And then helpful people explain - and keep explaining. The clock is running out and there are zillions of important issues to discuss. Finally, I raise my hand and request we move on to other stuff.
This is typical of boards everywhere. People driving each other crazy. It’s human nature. It’s all part of the process of getting things done. By the time the meeting ends, I feel we’ve accomplished something.
The convention has been going on for a day and a half when we finally get to the official “Opening.” TV reporter Bill Curtis tells us about his son Scott, with schizophrenia, who died of complications from obesity. When he made mention of his son on the air, he relates, his colleagues looked at him as if he had leprosy. “No one wants to talk about it,” he told the gathering. “It’s time we started talking about it.”
Jessie Close shares some of her personal journey, one that includes her own challenges of living with bipolar, not to mention the additional burdens of raising a kid with a schizoaffective diagnosis. She tells us of an everyday event - of making son Calen’s Christmas homecoming safe for him. Everyday event, but significant.
Highly significant. These little things matter bigtime. Son Calen addresses us. Living with mental illness definitely has its challenges. But here he is up on the stage, talking to at least a thousand people in the room. Perhaps because many Christmases ago his mom helped him survive the day? Gave him asylum?
Little things, big results.
The last part of the session is given over to author Pete Earley interviewing NAMI CEO Michael Fitzpatrick. Fitzpatrick lets us know that the Medicaid stuff happening in Washington is the worst crisis he’s seen in 30 years. More discretionary power will be given to state politicians, he tells us, which in his own experience is never a good thing. In essence, states will be given free rein to slash mental health services. It’s already happening and it will get worse.
On a different matter, he tells us: “You can never underestimate policy-makers and their lack of understanding of mental illness.”
Most of the people in the room know Pete Earley from his book, “Crazy: A Father’s Search Through America’s Mental Health Madness.” Pete updates us on his kid, Mike, who had his first psychotic break soon after graduating from college, which set off a family nightmare that saw his son in the criminal justice system rather than being treated.
Sometime after the book came out, Pete relates, Mike flipped out yet again. The police brought him to the same hospital where the original nightmare started. Same script. Doctors wouldn’t treat him. He’s fine, the physician told the officer who brought him in. New twist to the script: The officer had been CIT-trained. Fine, said the officer. Then I’ll drop him off in front of your house.
Mike got admitted, got treated, got services. Then he trained as a peer specialist. He’s now helping others and hasn’t had a setback in four years.
A different outcome, but there is never an ending to the story. Or any other stories. I have been listening to stories all day. Over lunch, on the run, over a beer. You don’t just retire from being an advocate, from pushing back against the madness. Not when you’re living in a story with no ending ...