Several of you have asked when my book is coming out. At first, I did not find a publisher interested enough in mental illness and addiction in the family to publish it. It just isn’t sexy.
One New York editor, in rejecting the book wrote, “I wondered why [this mother] was telling us this story. The scope of this book is large—it starts when [her son] is a teenager and documents many setbacks until he is in his forties. . . .It doesn’t have a particularly happy ending.”
She’s right; it doesn’t have a particularly happy ending because the journey is ongoing. But the point of the book is not to present a sunny fix to the problem of mental illness and addiction. There is no easy fix. The point of the book is that millions of families like ours have a child with a mental illness and these families are looking for answers, effective treatment, and compassion. The story of mental illness is a family story, a community story, a global story, not just the story of an individual.
The editor asks why is this mother telling us this story? Why isn’t her son telling his own story? I’ll get back to the son later but why not a mother telling us this story? Mothers are the primary caretakers of children, particularly adult children with a disability.
I just came from a NAMI (National Alliance on Mental Illness) meeting in Santa Barbara where most of the people there to “Ask the Doctor” questions about treatment and medication were mothers. In fact, 99% of the 60 or so participants in the meeting were women. Mothers whose children have been on the street upon discharge from a hospitalization because there are no wrap around services to provide housing; mothers who have to beg jail personnel to provide psychiatric medication for their mentally ill children; mothers who fear that they will die before their adult child gets the treatment he or she needs. Not one father asked a question because they weren’t there.
The psychiatrist present at the meeting had few satisfactory answers to the questions we asked. I wanted to know what new anxiety medications have been developed to treat the anxiety that accompanies my son’s bipolar illness. Like many patients, his manic depression is treated with a mood stabilizer that is somewhat effective in managing his manic moods but for years, his anxiety has been treated with klonopin, a highly addictive benzodiazepine that exacerbates his condition. She replied that there is so little money devoted to research and development of new meds for mental illness that there has not been any new anxiety drug developed since the benzodiazepines—like valium and xanex– were brought on the market 30 years ago.
Our loved ones don’t get better, they just get addicted. And the drug companies get rich. She admitted that 70% of those with mental illness worldwide are under- treated or inadequately treated. “It’s not just our community,” she said, “it’s an epidemic worldwide. You can find money to treat cancer, heart disease, and AIDs but there’s little interest in funding mental health research. Despite the interest in neuroscience.”
Unfortunately, we have been hearing this for years; that’s why I’m telling this story. Mental illness only becomes a focus for Congressional hearings and legislation as a diversion from enacting strong gun control. As you’ve probably noticed, treatment for mental illness has dropped from the front page.
Getting back to the New York editor who asks, “Why isn’t her son telling us this story?” Apparently she is unaware that a person suffering from a mental illness may lack the concentration and focus it takes to write a book, the courage to excavate a life, to figure out why the synapses in one’s brain continue to misfire, and to have the guts to expose the feeling that you are broken in some way that is invisible to a culture that doesn’t care.
So, why is this mother telling us this story? Because she can.