Readers continue to comment about my recent blog: The Changing Face of NAMI . In addition to the 140 plus comments that have been posted, I’ve received emails from NAMI friends and leaders who were dismayed by the angry tone of some writers. This reaction by Kathy Brandt, a NAMI activist in Colorado Springs, is representative:
I’m disturbed by the some of the animosity within NAMI that’s reflected in the comments on your website. We ought to be colleagues who accept one another’s opinions (agree to disagree) rather than being adversaries. Surely, as people who have been in the trenches of discrimination and stigma, we are the best at accepting and celebrating difference.
In addition to her NAMI work, Kathy Brandt is a published novelist and accomplished scuba diver whose mysteries feature an underwater crime scene investigator. When I met her last year, she told me that she and her son, Max Maddox, where writing a joint memoir entitled Walks On The Margins. In their non-fiction account, Kathy and Max write alternating chapters — she writes from a mother’s perspective about mental illness and Max describes his experiences as he works his way through psychosis into recovery and eventually learns how to manage the symptoms of bipolar disorder.
I’ve just read an advance copy of their book and mother and son are both skilled writers. They’re also painfully honest. I felt a sense of deja vu reading their memoir.
I happen to finish reading Walks On The Margins at about the same time that I wrote my blog about NAMI’s changing face and was struck by two simple, but important thoughts.
1. We are in this together. Parents or consumers or both — we are all family members.
2. Strong opinions about forced medication and involuntary treatment might divide members but those issues are not what brought most of us into NAMI or why we belong to it. Most of us attended our first NAMI meeting because we needed help, advice and support.
Kathy captures both points in the memoir that she has written with Max. She gave me permission to publish two excerpts that I found especially poignant about her relationship with NAMI. I will write more about the book and will include excerpts from Max’s journey in a later blog. But today I want to share with you what Kathy wrote about NAMI.
From Walks On The Margins (Used by permission. Copyright 2013 Kathleen Brandt and Max Maddox)
On the night before Valentines Day, I attended a health forum organized by several non-profits in the community. I wasn’t exactly sure where I fit in and contemplated leaving when a woman recognized my discomfort and asked me to join her discussion group. Gayle introduced herself as the coordinator of a program called Family-to-Family and the mother of a son with bipolar disorder.
Others joined us, a woman with a sister and parents with a son, both with paranoid schizophrenia, a wife whose husband suffered from PTSD. And me, mother of a son with Bipolar I. Gayle began by telling us about her son, thirty eight, working, and on his own. Others followed with one painful story after another, stories about crisis, destruction, fear. The ones we loved were no longer the people we had always known. I told them that Max was out on the street somewhere, delusional and fully lost in his imaginary world.
As the meeting broke up, Gayle walked me to the door and handed me a pamphlet about her organization, the National Alliance on Mental Illness, which she called NAMI.
For a while inside I felt less lonely, relieved to be talking with people who knew what it meant to cope with mental illness, people who were willing to listen and help each other. But out in the dark, I recalled the look in Gayle’s eyes—experience and empathy, but also deeply buried grief.
The next day the police called. “We’ve got Max Maddox in our squad car down on Tejon Street. The charge is panhandling but he’s confused and obviously in trouble. He said you’re his mother.”
Several chapters later, Kathy again mentions NAMI.
We were in week six of the twelve week Family-to-Family program, offered free by the National Alliance on Mental Illness (NAMI). Everyone in the room had a relative with mental illness. For many, it was the first time they had spoken
openly about their experiences. As the weeks past, we told stories about hospitalizations, financial ruin, and destroyed families. Stories of bipolar, obsessive compulsive, and borderline personality disorders, schizophrenia, depression and post-traumatic stress. These were the wives and husbands, mothers and fathers, brothers, sisters, daughters, and sons.“He’s not working,” one explained. “He says he’s looking for a job, but I know he’s just out driving around. He’s given up. I’m not sure I can stick it out anymore. I just want him to be the man I married ten years ago. Right now, it’s like I’m taking care of another child. I don’t want another child. I want a partner.”She was contemplating divorce and this class was her last ditch effort to figure things out.“She lost everything,” said another. “Now she lives on the streets. She doesn’t believe that she has schizophrenia, won’t do anything to help herself, or listen to anything we tell her. All we do is argue. I can’t stand to see her anymore. She’s not the daughter we raised.”An older woman in the class, a retired teacher, had been taking care of her son for forty-two years. He had paranoid schizophrenia. Her adult daughter sat quietly beside her, knowing that at some point she was going to have to take over her brother’s care. After so many years, her mother had accepted her son’s limitations and behavior. She’d given up trying to convince him that he didn’t need to duct tape the seams around bedroom windows and spray for insects. After years of experimenting with medications, she believed this was the best it was ever going to be for her son. Sometimes medication and a caring family simply couldn’t help a person become what we once hoped them to be.I told my story too. That two months ago, I had been preparing for the worst—that Max would be incapable of living on his own. I knew it was risky to look too far into the future. Before he got sick, I assumed Max would graduate from college, maybe go on to graduate school, find a fulfilling career, get married, and maybe have kids. He had already accomplished so much, but I knew his road would be harder and more complicated, and that he’d continue to follow a crooked and unconventional path.By the end of our twelve week class, many had let their anger go and quit blaming their loved-ones. And we’d stopped blaming ourselves. We’d accepted the “new normal” of life with mental illness. We left that last night with two-inch thick binders filled with information about mental illness, about what to do in a crisis, and how to communicate, problem solve, and take care of ourselves. We’d become educated and empowered. We’d learned that recovery was possible and that we weren’t as alone as we’d once thought.