I was sitting at a table, a cab pulled up, and I said, “There she is.” And the door opened, and a person got out of the cab that I didn’t recognize at all.

Kim would often shave her hair off to let the spirits loose. We were on the bus one day in Seattle, and she’s bald as can be and there are two sweet ladies across the aisle, and one of them leans over and looks at her, and says, “How are you doing? Are you coming along all right? Are you doing well?” And I’m sitting and I think, “She thinks Kimmy has cancer.” And she is so forthcoming and so dear. Just a stranger across a bus aisle is asking how are you doing. If she knew that Kim has schizophrenia, I doubt we would have said a word.

I think there is something in all of us that kind of projects into the future and wants wonderful things for our children and family members, and that is for the moment stymied. So what do I do with that? What do we do with each other in the family? How do I take care of the well children who I am really neglecting in order to try to do something for the child who’s ill?

We must see the heroism of that condition. And that’s when we can join them. And we really can’t join them until we are able to, as witnesses, see the heroism of that position. And that is when everything changes. When I began to see Kim not as a dancer, but as a strong, able, challenged, overcoming human being. And it changed our relationship and the way we could work together.

So much of what NAMI is today, is a group of mothers, fathers who said, “We can’t have this! This is wrong!” So let’s form an organization that can be dedicated to education and advocacy and support, because we are really all lost lambs. And the people who we would turn to, the priests of our culture, which is the doctors, aren’t talking to us! And we are still trying to change that. It got into the groundwater, it is part of our culture to look at mental illness as if it is either the fault of the family, a parent, and sadly it is also looked at as if it were the fault of person who has it.

In previous theory, there was no such thing as a caring family. But nobody with Alzheimer’s goes into the doctor, and the doctor says to the children, bringing their mother in with Alzheimer’s, “Now what did you do with your mother so that she got Alzheimer’s?” But that’s what you hear.

It’s a sad story when we hear families say that the first person they turned to, their pastor, was not able to help them. It wasn’t that he was unkind, or unsympathetic, he just didn’t know what to say. And he didn’t know what to do, and he didn’t know where to go within the congregation to be helpful.

Families will say this, “Only illness in the world where you never get a covered dish.” There is something about having a mental illness where everything falls away, and what you experience is fear and isolation rather than a sense of people coming towards you.

I feel a little two faced. One side of my face talks about recovery, but the other side has to recognize how desperately behind we are... We have a process with people getting better, but in many steps they are saying you can’t have the medication that helps you unless you try a couple of other medications that don’t. We are getting formularies that prevent people access to medical [help]. Can you imagine a cancer patient being told they can’t get a certain kind of medication?

How can we fix this? What more can we do as a society to finally solve the problem of people with mental illness? We keep stashing them somewhere. At home, in jails, on the streets.