Sons of Madness

Sons of Madness book cover

Growing Up and Older with a Mentally Ill Parent

Considering the huge numbers of people who have a mental illness, their suffering and lost potential, and the tremendous cost to society, it’s high time we made mental illness a priority. Instead, it continues to be a topic we avoid. Our mental health services are shamefully and sorely lacking. Those who suffer from mental illness are not being served, nor are their families.

I’ve written about this topic before at Books Can Save a Life when I’ve featured books about families with mental illness, particularly the plight of children and adult children with mentally ill parents. (See Children of Mental Illness Part I, Children of Mental Illness Part 2, Encountering the Dark Matter of Mental Illness, and Do Genes Affect Our Mental Health?) I grew up with a mother who had schizophrenia and, as I’ve conducted research for a memoir about our family’s experiences, I’m sad to say many aspects of the mental health system are no better than they were decades ago, and mental illness carries as much stigma today as it did in the 1960s.

Today, I’d like to highlight the newly published Sons of Madness: Growing Up and Older with a Mentally Ill Parent, by Susan Nathiel, PhD, LMFT. It’s a companion volume to her first book, Daughters of Madness: Growing Up and Older with a Mentally Ill Mother. Susan (whose mother had schizophrenia) has collected here interviews with twelve men whose mother or father suffered from schizophrenia, depression, bipolar disorder, or another serious mental illness.

These are deeply disturbing stories of men who in many cases have never talked about their families or their childhood and teen years. They were too ashamed and traumatized to reveal their family secrets, and they’ve never been asked. Consider these chapter titles: “Nobody cared until my family was destroyed,” “My mother’s lobotomy saved my life,” “If you leave the house, you’ll be murdered,” “Our family code: Protect Dad at all costs,” “I called them nightly shows – all violence,” and “I should have been able to save her.”  While it’s never easy having a mentally ill parent, boys and men are especially challenged by the cultural expectation that they not show their emotions.

Some of these men have healed, some have not, and all are scarred. I want to point out that most people with mental illness are not violent, but their families, including their children, must contend with a high degree of dysfunction that can be continual, extremely frightening, and traumatizing. It’s painful to read the words of these men, but what impressed me especially was their profound isolation as children. In many cases, it was impossible to get the mentally ill parent anywhere near a psychiatrist or treatment facility. Saddest of all is that extended family members and sometimes the healthy parent turned a blind eye to the needs of the children. No one helped them, and no one seemed to care.

I can’t fathom how children this neglected, with no support systems, encouragement, or empathy, can grow up to be healthy, trusting, fulfilled, and able to contribute their unique talents and gifts to society. Many do. But consider all the lost potential. I also wondered, as I read the interviews, where child abuse and addiction end and mental illness begins – my point being that I believe many children grow up contending, alone, with parents whose dysfunctions can cause lifelong damage and persist across generations, whether or not the parents are ever formally diagnosed with an identifiable mental illness.

There’s been some criticism of the many memoirs of family dysfunction that have been published in the last few decades, and accusations of whining and naval gazing. This only increases shame and makes those who’ve been affected hesitate to bring their experiences into the light of day, where solutions can be found and those who need it given relief and support.

We need to pay more attention to our children and the invisible traumas they may be contending with.

In his New York Time’s column today, Nicholas Kristof has identified mental illness as an issue that needs more attention. I hope you’ll add your thoughts about mental illness and families here in the comments or on Kristof’s blog, On the Ground.  You can also visit his Facebook page and leave a comment. I welcome comments about this on my Facebook page as well.

“Be kind, for everyone you meet is fighting a hard battle.” Ian Maclaren, Scottish author and theologian

Books Can Save a Life: most viewed posts in 2013

Snow-covered trees

Attractions in 2013

These are the Books Can Save a Life posts that got the most views in 2013.

I was gratified to see three of my most popular posts are about having a family member who suffers from mental illness. Early in the new year I’ll be writing about Susan Nathiel’s new book, Sons of Madness: Growing Up and Older with a Mentally Ill Parent. There is still very little written about the experience of having a mother or father with a mental illness; Susan’s book is an important contribution.

Joyce Maynard, Elizabeth Gilbert, George Saunders coming up

Been away for a bit while designer Nicole Bateman of The Pixel Boutique gives Books Can Save a Life a fresh, new look. (Thank you, Nicole!) But I’ve been reading, as always, and here’s what’s coming up:

After Her book coverAfter HerJoyce Maynard’s latest novel. Joyce has written several novels as well as the memoir, At Home in the World. After Her is loosely based on the true story of a serial killer who terrorized Northern California in the late 1970s.

Tenth of December – I don’t usually read short stories, but I’d heard so many wonderful things about George Saunders I had to pick up a copy of his latest collection when I saw it on our public library’s “Most Wanted” shelf. Besides, he teaches a stone’s throw away at Syracuse University – he’s someone I should know about.

Sons of MadnessI’ve written about Susan Nathiel’s excellent Daughters of Madness: Growing Up and Older With a Mentally Ill Mother, a collection of interviews with adult women. Sons of Madness: Growing Up and Older With a Mentally Ill Parent is a companion volume.

The Art of the Commonplace – I’ve always wanted to know what Wendell Berry is all about, so I’m reading his collection of agrarian essays.

Catching Fire, the second book in Suzanne Collins’ Hunger Games trilogy has been made into a movie and will be released November 22. I wrote about the first movie and book here, so I just have to check out the next installment.

The Signature of All Things book coverAnd last but not least, I can’t wait to dip into Elizabeth Gilbert’s latest novel, The Signature of All Things. Beautiful book jacket and end papers. The epigraph: “What life is, we know not. What life does, we know well.”  Lord Perceval

I’ll be back with a closer look at all of these.

Children of mental illness, part 2

“…so we just took her home to wait for a bed in the good hospital, which was going to take a few days, according to him [the psychiatrist]. He said to keep a watch on her, remove all the knives, put sheets over the mirrors so she can’t see herself, because that would set her off. And of course, make sure she doesn’t kill herself, or anybody else.”  June, from Daughters of Madness, when she and her sister (ages 13 and 15) sought treatment for their mother in the 1980s.

Daughters of Madness book coverI’ve been reading Growing Up With a Schizophrenic Mother by Margaret J. Brown and Doris Parker Roberts, and Daughters of Madness by Susan Nathiel. After my last post, Children of Mental Illness, I was thrilled to hear from author Susan Nathiel. Susan tells me she will publish Sons of Madness this August.  There are fewer interviews in her forthcoming book than in Daughters of Madness because male volunteers were harder to find. Susan says, however, that the interviews included in her new book are excellent.  I’m glad to hear about this new publication, because there still isn’t a lot written about the experience of growing up with a seriously mentally ill parent.

When I was coming of age in the 1960s and 1970s, I thought I was the only daughter in the world who had a mother with schizophrenia. Many of the individuals interviewed in these books are baby boomers like me. Some of us had encounters with mental health professionals who were compassionate and helpful, but more often they were uninterested in helping children and teens with a mentally ill parent, unaware of their needs, or not permitted to help by the mentally ill parent or another adult family member.

Back then, there was no NAMI (National Alliance on Mental Illness). There were no support groups for families of the mentally ill, little in the way of books or educational materials about mental illness, and no Internet where you could plug in a keyword such as “schizophrenia” and retrieve information. Sometimes, I think that dearth of information and the fact that mental illness was kept secret by all concerned were the reasons I went into communications and later medical librarianship. I wanted a voice that could be heard, and I wanted to give people the vital health information they needed and deserved.

Thankfully, things have changed, though I don’t think they’ve changed enough. There are excellent mental health family services at the medical center where I work, and we librarians at the medical library often give information and educational materials to patients. One of our librarians specializes in providing mental health information to patients and families. But mental health care in our country still needs fixing; unfortunately, too many patients and families don’t get the services they need.

When I was a teenager, it didn’t occur to my mother’s mental health care providers that I might need to know her diagnosis. Now, when I give a patient or a family member health information, I feel I’m doing a little bit to validate their experiences and make their lives better. But I’m also making up for what I never got until quite late in the game. I’m saying to patients and their families: You matter. You need to know. You deserve the best information we can give you.

Book Giveaway

In celebration of my first anniversary as a blogger, I’m giving away a book to one lucky person who leaves a comment on any of my posts here at Books Can Save a Life in February. There are still a few days left to join the conversation and add your name to the drawing, so please do!

Quote from: Daughters of Madness: Growing Up and Older With a Mentally Ill Mother, Susan Nathiel. Praeger, Westport, Connecticut: 2007.

Children of mental illness, part 1

….what a courageous little girl she was…she kept me alive. I feel such pride in her…

These are the words of the daughter of a mother with serious mental illness looking back on her childhood in Growing Up With a Schizophrenic Mother, by Margaret J. Brown and Doris Parker Roberts.

Growiong Up With a Schizophrenic Mother book coverI never thought about it quite this way before, but I’m a member of a select group: adult children of a mother with schizophrenia.

There are more people who have a mother with schizophrenia than you might think –  millions, in fact – because often schizophrenia doesn’t manifest until after a woman has children.

But most of us believe we’re the only ones. No one else could possibly have had the bizarre, surreal childhoods we had. We believe this because we grew up in layers of isolation, self-imposed by ourselves and our families due to embarrassment, shame, and the illness itself, and imposed from the outside by others: extended family, our communities, and society.

We were rarely asked about what was going on with us and our families, though in most cases it was obvious there was something wrong. People didn’t want to hear about mental illness because it scared them and made them uncomfortable. If we did try to confide in someone, which was rare, we were explicitly told not to talk about it or made to feel the topic was inappropriate. Often, the mentally ill parent wanted nothing to do with others and drove everyone away.

I grew up in the 1950s, 60s, and 70s, when the stigma and silence surrounding mental illness were even more profound than it is today. Many of the adult children in the two books I’ve been reading are of my generation.

Growing Up With a Schizophrenic Mother, by Margaret J. Brown and Doris Parker Roberts (2000), and Daughters of Madness: Growing Up and Older with a Mentally Ill Mother by Susan Nathiel (2007), contain excerpts from in-depth interviews with women and men who grew up with a seriously mentally ill mother. At the time they were researching their book, authors Brown and Roberts found little about the effects of mentally ill parents on children in the psychiatric literature, though that is changing. Margaret Brown and Susan Nathiel grew up with mothers who suffered from schizophrenia and, like many with similar backgrounds, both became therapists. Nathiel and her father weathered decades of her mother’s schizophrenia but never once spoke about it with each other until Nathiel was in her fifties.

The authors concede these books may be skewed because they are the stories of high-functioning survivors, many who now have loving, stable families and successful careers as accountants, therapists, lawyers, and sales people. Those not so resilient are less likely to volunteer to speak about their pasts. Yet despite the measure of success achieved by the adult children in these books, in many cases the stories they tell can only be described as horror stories. The adult children themselves have an unshakeable, lifelong sense of loss and loneliness, and some do not even have a solid sense of their own selves.

One little girl, Naomi, learned to follow other children to school when she and her mother moved to a new neighborhood, as they often did, and enroll herself because there was no one else to do it. Other children learned how to cash welfare checks, go to the grocery store for food, and negotiate with landlords.

In the very worst of these stories, seriously mentally ill mothers tried to kill their children (by poisoning, turning on gas stove burners, parking on railroad tracks). Yet, in all of these instances, the children remained in the care of their mothers.

These extreme cases are rare, and it’s important to remember this was the mental illness speaking and not the true volition of the mentally ill mothers themselves.

Often, the parents divorced and the children lived alone with their ill mothers. In some cases, fathers tried to gain custody, but in decades past it was customary for mothers to have custody. In other cases, the fathers had serious psychological issues of their own or they chose to have little or no contact with the family.

I was fortunate for a number of reasons: my parents stayed together, we were stable financially, and my mother was relatively high-functioning. Though she could be hostile, frightening, and unpredictable (my siblings and I were routinely left alone with her), she was never violent in the way some of the mentally ill mothers described here were, and there was no physical abuse.

It was clear to extended family, friends, and neighbors that something was wrong with my mother, and if you were on the outside looking in I don’t see how you could be certain she wasn’t dangerous. (I found out years later my father discussed with his parents the possibility of us living with them.) Our family doctor, our minister, my aunts and uncles knew, but no one said anything to me about it.  As an older teenager, I turned to my aunt for some help, but throughout my childhood and adolescence I remember only two adults who initiated conversations about my mother: my piano teacher and my grandmother.daughtersofmadness

When I was ten or eleven, my teacher asked me if everything was alright at home. I was too embarrassed and too fearful of the consequences to confide in her, so I said everything was fine, though I know she didn’t believe me.

I had always considered my maternal grandmother to be my best friend. We were very close, and sometimes she’d spend the night, which I loved. But one night when she was visiting, my mother had a severe psychotic episode. My grandmother was so frightened and upset she called a friend to come and get her. “I’m not staying another minute in this house,” she said. My father wasn’t home. It was past midnight when I stood at the living room window and watched my grandmother drive away.

When I next saw my grandmother, she said, “I spoke with my doctor, and he said your mother could do harm to you kids.”

I didn’t know what I was supposed to do with that information; I was twelve.

When I was 19, I began to try and find help for my mother. (She had never seen a psychiatrist. There was nothing wrong with her, it was the world that was crazy.) I made an appointment with a social worker at the hospital nearby, which had a new psychiatric wing. It was my first encounter with the mental health system and, for the life of me, I can’t fathom why the social worker seemed irritated I had even made the appointment in the first place. She asked me several times if my mother was going through menopause. I didn’t know much about menopause, but I thought my mother’s behavior was awfully extreme for menopause. Finally, based on the cursory information I told her, the social worker told me not to do anything, because nothing could help my mother.

Ultimately, my mother was hospitalized for a time (that is another story), but no one else in our family was assessed or given counseling. In fact, I wasn’t told my mother’s diagnosis, and I felt I didn’t have the right to ask. I believe the mental health community was of little help to our family, and it failed my mother, too, in crucial ways.

A couple of years later when I was living in New York, I saw a therapist who urged me to talk with my mother’s psychiatrist about her diagnosis. After some badgering, the very reluctant Dr. M –  who said my mother had a right to privacy and confidentiality –  finally granted me an appointment. I’m not exaggerating when I say he looked like Freud himself. Dr. M was intimidating and formal, without an ounce of warmth or ease. He finally begrudged me my mother’s diagnosis. As far as he could tell, he said, she had paranoid schizophrenia.

This was in 1975. Today there are many compassionate and devoted mental health professionals, and there isn’t as much silence about mental illness as there used to be, but we have a long way to go. The mental health system is far from what it should be, and public stigma and denial are still pervasive. I’m sure there are children with seriously mentally ill parents living in situations similar to those I’ve described.

The problem of mental illness can’t be borne and solved by the families alone. They need our help.

Quote from Growing Up With a Schizophrenic Mother, by Margaret J. Brown and Doris Parker Roberts. McFarland & Company, Inc. Jefferson, N.C. 2000

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