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.
I so look forward to purchasing your book. Reading your blog has helped me to know that I am not alone. The pain of having a bipolar son jailed from a hospital situation is devastating. I went to NAMI meetings, and I never heard of this type of situation happening .
Maureen, I live in Minnesota and many people have asked me why I have not started a blog regarding my 22 year old son’s addiction, mental illness, and multiple incarcerations. Every day brings either another crisis, a pang of losing my son to death from drugs, or the uphill battle of communicating with state agencies on my son’s needs to stay alive. Your blog cuts to the core of this massive problem no one wants to address in our court systems or legislature. I am encouraged to see your blog and may some day start one of my own. In the meantime I am grateful I ran across your blog when I googled “incarcerating the mentally ill addict”.
Thank you for writing and I’m sorry you are dealing with the pain of losing your son. It is an ongoing heartbreak that so many families endure. I encourage you to write about your experience with your son. It will be healing for you and others will come to understand what a terrible cost addiction and mental illness has on the well being of families like yours and mine as well the cost to our society that refuses to come to grips with this difficult issue. Write to your legislature as well.
Be brave Maureen. Sending positive thoughts.
I like how you said that you wrote the book because those with mental illnesses can’t always speak up for themselves. I wrote a memoir about my initial diagnosis with bipolar disorder partly because I wanted to give voice to those who have gone through similar experiences as mine, but cannot, or do not know how to, speak.
You are probably looking for a much larger platform to help share your book with the world, but I would love to consider publishing your book through my small press. I have just finished editing an anthology on motherhood and loss that I am publishing through my small press. I found you initially because I have been trying to wrap up the book with an epilogue (it comes out in a couple of weeks). I was trying to connect the idea of a grief journey with the heroine’s journey…it seemed to me that grief for women whose mothering path has been interrupted by tragedy is an unique journey, and maybe a mythic framework would help provide a bookend to the anthology. Anyways, I found your blog by accident, and noticed that you are writing a memoir which is sort of a mirror image of my own. That’s interesting because I know the loved ones around me have not had the opportunity to share their perspectives on my struggles (and in turn their struggles) in the same way I have. I imagine that it isn’t just those with mental health challenges who feel voiceless, but the loved ones around them do as well. That makes your memoir pretty unique, from everything I have read in the memoirs about mental illness (and I have read a lot of them!)
I once again enjoyed your blog–the frustration of it all is clear–mental illness always seems to be something on the back burner–have you thought of self publishing–people around here are doing a bit of that.
Happy Easter to you guys.
The ignorance about mental illness is vast. If this editor had stopped to consider what she said I would hope she would be embarrassed. A mother’s concern for her children never stops, even when they are independent adults. When an adult child is mentally ill, his mother is drawn into the anguish. By nature she cannot stop looking for answers. I would bet that editor does not have kids.
Well said, Maureen.
Bravo to this mother who stands up for all those who suffer from mental illness. It is a disease that strikes at any age but is most apparent at ages 18-26 when our children are suppose to be independent. No one asks for this, not the child, not the parent. I commend Maureen for speaking out.
Why must every non-fiction book published in America have a happy ending? Your post puts the spotlight back on the bad job we do treating mental illness. It is something I think about a lot these days, every time I hear about gun control (and not mental illness) in the discussions of mass shootings. It is sad that our society just ignores this problem as well. Mental illness is still a taboo issue. Better left ignored, or so it seems in our “enlightened” country.
I’m sure there is a great market for your book. Keeping my fingers crossed for you.
I am SOOOO glad that this mother can write!! This piece particularly touched me. Thank you, Maureen, for having the courage to keep writing and keep reaching out. It is so important!
This is a great statement about the continuing societal indifference to treatment and care for mental illness, and the unequal sharing of the burden within most families in caring for a mentally ill adult child. Bravo.