Monday, March 21, 2011

Fear and Open Dialogue

Today I am going to openly share an email exchange. It is not easy for me to share this, but it seems important to spark discussion. The audience I hope to reach with this is other Daughters and Sons who will hopefully comment and share their perspective. Let me give some background before I do.

Two weeks ago I had the opportunity to have dinner with one of the creators of The Crooked House website, Rosemary Zibert, and one of the people interviewed on the site, Marin. We had dinner here in New York, near Columbia University. Rosemary was in town for the theatrical reading of one of her plays and Marin was completing her first semester in an MFA writing program. We could hardly cover the many layers of personal, professional and mental health advocacy topics we hoped to over that dinner.

At dinner Marin shared a printed copy of a documentary essay she wrote based on an interview she did with me last fall. It is important to me as I organize for Daughters and Sons that my own story not be the focus of this effort. But in this case, a dialogue about what Marin wrote sparked an interesting and hot-button topic. Marin, Rosemary and I have agreed to share our dialogue here, based on what Marin wrote, as a series of comments on this post. Our HOPE is that other Daughters and Sons will also comment and share their perspective.

What Marin wrote, in my opinion, gets a bit to the heart of what peer support is about. Finding peers is important, for everyone, no matter what your background.

Here is the final section of what Marin wrote:


At forty years old, Maggie Jarry is tall and pale and a little bit bohemian. Her dark hair curls loosely about her head in the same way her scarf falls over her neck. When she speaks about policy issues, her well-chosen words come out strong and clear. She has many times articulated the problem that her own life stories, and those of others like her, have revealed: “A framework for contextualizing those stories into a call to action that includes policy recommendations and systemic change has been lacking,” she wrote in the journal Psychiatric Services in 2009. Now she adds, “When I was growing up, the only information I could find was about the biological likelihood of offspring becoming ill. That was only reinforcing my fears. It wasn’t helping me to understand and normalize my experiences.”

But as I interview Maggie I notice that her voice, so resonant, doesn’t quite fit with her appearance; something in her look that is a bit frayed, perhaps. Then we move on to her personal story, and something changes. Her voice becomes thinner, crackles, softens. The shift is so subtle that you might miss it. But sitting across a small table from her, I catch it easily. She still finds herself a little bit unraveled by the act of describing the central, defining experiences of her life.

I have felt the same shift, that sense of the ground moving under my feet, every time I begin to tell someone that my mother has schizophrenia. I recognize the quiet panic behind her resolve; the incorrigible shakiness of one’s own body in containing the mass of emotion; the phenomenal, compensatory capacity for abstract thought; and the tiredness of one who knows how hard it was to get from there to here.

Until now I have never, outside my own family, discussed mental illness with another child of schizophrenia. And as we talk, it hits me that in some way I have never witnessed before, we are breathtakingly, mind-bogglingly alike. Taking in her words, her face, her demeanor—I feel not only her story but her whole identity reaching out to me like a benediction.

The next few comments will show the email exchange that came from Marin, Rosemary and my take on what this experience between Marin and myself was about. Part of what we will talk about is whether abuse or neglect are part of the story of most Daughters and Sons.