2016 Favorite Books & Posts

img_4093

Under the tree this year

 

Several of my favorite books read this year were published in 2016. My top read, a memoir, was first published in Germany in 1938.

You’ll see plenty of memoirs on my list. Almost all the fiction is historical. Two are set in the northern Arctic regions.

Why I Write Memoir was by far my most popular post in 2016.

My Most Unusual & Memorable Read in 2016

A Woman in the Polar Nightby Christiane Ritter (memoir)

Favorite Fiction Read in 2016

To the Bright Edge#1 To the Bright Edge of the World, by Eowyn Ivey

#2 News of the World, by Paulette Jiles

#3 Do Not Say We Have Nothing, by Madeleine Thien (not yet reviewed on Books Can Save A Life)

#4 My Name Is Lucy Barton, by Elizabeth Strout 

Favorite Memoirs Read in 2016

#1 Lab Girlby Hope Jahren

#2 Ghostbread, by Sonja Livingston

#3 The Beautiful Struggle, by Ta-Nahesi Coates

#4 H Is for Hawk, by Helen Macdonald

Favorite Nonfiction Read in 2016

67 Shots#1 67 Shots: Kent State and the End of American Innocence, by Howard Means

#2 The Road to Character, by David Brooks (not reviewed on Books Can Save A Life)

Favorite Author New to Me

Sonja Livingston (Ladies Night at the Dreamland; Queen of the Fall; Ghostbread)

MOST POPULAR BOOKS CAN SAVE A LIFE POSTS, 2016

#1 Why I Write Memoir

#2 A Mother’s Reckoning: Living in the Aftermath of Tragedy, by Sue Klebold (memoir)

Also popular

When Breath Becomes Air, by Paul Kalanithi (memoir)

The Cancer Survivor’s Garden Companion, by Jenny Peterson

MOST POPULAR BOOKS CAN SAVE A LIFE POSTS OF ALL TIME

Daughters of Madness book cover#1 Meeting the Dark Matter of Mental Illness

#2 Reading Junot Diaz

#3 Do Genes Shape Our Mental Health?

#4 Children of Mental Illness, Part I

What were your favorite books read in 2016, and what is on your list for 2017?

Lab Girl

lab-girl “Each beginning is the end of a waiting. We are each given exactly one chance to be. Each of us is both impossible and inevitable. Every replete tree was first a seed that waited.”  – Hope Jahren, Lab Girl

“After scientists broke open the coat of a lotus seed (Nelumbo nucifera) and coddled the embryo into growth, they kept the empty husk. When they radiocarbon-dated this discarded outer shell, they discovered that their seedling had been waiting for them within a peat bog in China for no less than two thousand years. This tiny seed had stubbornly kept up the hope of its own future while entire human civilizations rose and fell. And then one day this little plant’s yearning finally burst forth within a laboratory.”

“Science has taught me that everything is more complicated than we first assume, and that being able to derive happiness from discovery is a recipe for a beautiful life.”

Lab Girl is an extraordinary memoir, and Hope Jahren is an important new voice who breaks new ground in literary autobiography. We just don’t hear from enough scientists and researchers, and certainly we don’t hear from enough women in science who have struggled and prevailed at making careers in difficult, often male-dominated fields.

Lab Girl is for the lay person who loves plants, trees, and nature, and for the lay person who thinks plants, trees, and nature are boring and who wants to be dazzled, moved, changed, and reconnected with the holiness and mystery of life.

hopeLab Girl is for women in science and research, and women thinking of careers in science and research. But men in science and research will love the book, too.

Lab Girl is for anyone making a career and building a family in the face of a serious mental illness, and for those who want to better understand people with mental illness.

Lab Girl is for those who care about the environment and climate change, and who want to connect with someone of like mind whose passion and energy are contagious. Because, as Hope says, we won’t have any trees left in six hundred years if we keep on our current path.

Lab Girl is for anyone who has important work to do and wants to be inspired and emboldened by someone not afraid to be different and go her own way.

I have Katie at Doing Dewey to thank for letting me know about this book. I’ve included several passages from the memoir because I couldn’t decide between them. They make me want to read Lab Girl all over again. I’m sure I will, since I’m working on a memoir of my own. For those of you who are memoir writers, this one is both inspiring and a great memoir model.

Women, and men, doing important work in science simply don’t get enough attention in our culture, which is especially saturated by superficial drivel at the moment. Lab Girl is the antidote. When I was a clinical librarian at UR Medicine, I was always impressed and mystified by the grad students and faculty, the women especially, who had lives so different from mine, who spent hours and hours in labs and out in the field researching esoteric topics that had the potential to change lives.

We should know more about them, the important work they are doing, and how they navigate the challenge of carving out rich, fulfilling personal lives as well. There is a deep vein of fascinating life stories in science that appeal to experts and lay people alike, and I hope Lab Girl will inspire many more memoirs of this kind.

The excerpt below is a good example of the organizing metaphor in Lab Girl: the rich and evocative parallels between plant life and human life. Hope alternates between chapters about plant life and her own life, which makes for a satisfying structure:

“Every species on Earth – past or present – from the single-celled microbe to the biggest dinosaur, daisies, trees, people – must accomplish the same five things in order to persist: grow, reproduce, rebuild, store resources, and defend itself….It seemed outrageous to hope that fertility, resources, time, desire, and love could all come together in the right way, and yet most women did eventually walk that path.”

Below are a few more quotes. Read the memoir!

“On some deep level, the realization that I could do good science was accompanied by the knowledge that I had formally and terminally missed my chance to become like any of the women that I had ever known.”

The boldface in the next quote is mine; I think it is an important point:

“A true scientist doesn’t perform prescribed experiments; she develops her own and thus generates wholly new knowledge. This transition between doing what you’re told and telling yourself what to do generally occurs midway through a dissertation. In many ways, it is the most difficult and terrifying thing that a student can do, and being unable or unwilling to do it is much of what weeds people out of Ph.D. programs.” 

“Public and private organizations all over the world have studied the mechanics of sexism within science and have concluded that they are complex and multifactorial. In my own small experience, sexism has been something very simple: the cumulative weight of constantly being told that you can’t possibly be what you are.”

“I’m good at science because I’m not good at listening. I have been told that I am intelligent, and I have been told that I am simple-minded. I have been told that I am trying to do too much, and I have been told that what I have done amounts to very little. I have been told that I can’t do what I want to do because I am a woman, and I have been told that I have only been allowed to do what I have done because I am a woman. I have been told that I can have eternal life, and I have been told that I will burn myself out into an early death. I have been admonished for being too feminine and I have been distrusted for being too masculine. I have been warned that I am far too sensitive and I have been accused of being heartlessly callous. But I was told all of these things by people who can’t understand the present or see the future any better than I can. Such recurrent pronouncements have forced me to accept that because I am a female scientist, nobody knows what the hell I am, and it has given me the delicious freedom to make it up as I go along. I don’t take advice from my colleagues, and I try not to give it. When I am pressed, I resort to these two sentences: You shouldn’t take this job too seriously. Except for when you should.”

Have you read Lab Girl? Do you have memoir favorites to recommend?

Why I Write Memoir (Excavating a Life)

SoldiersA long-time friend and important supporter of my work wisely suggested that I come out of the closet and become less close-mouthed about being a writer.

Hence this new Excavating a Life page on Books Can Save a Life, a kind of journal I’ll update from time to time as I work on a memoir.

My friend’s suggestion opened up a host of personal issues for me too numerous to delve into here: some are addressed in my memoir, and some I’ll write about in future posts. But suffice it to say I hesitated, in part because I believe in NOT saying much about the book or poem or essay one happens to be writing. Many writers would agree with this.

But not talking about a specific project isn’t the same thing as not talking about being a writer. And, let’s face it, I gave up a job I really liked and often miss because I needed more time and energy to see the memoir to completion. Since my days now largely revolve around writing the memoir (or they’re supposed to), it becomes very weird not to talk about this when other people ask me what I do with my time.

So, now I tell people I’m working on a memoir. Which generates all kinds of interesting questions and comments.

Liars' ClubYou may or may not know that memoirs have a REALLY bad reputation in some quarters. Mary Karr, whose memoir The Liars’ Club I view as a work of genius, wryly says memoir resides in the “low-rent” district of books and literature.

Some literary critics don’t even consider memoirs literature. Navel-gazing, they say, and often navel-gazing not done well.

For a time this bothered me. Was I spending my days navel-gazing?

But I’ve heard this criticism of memoir so many times now, that I’ve lost interest in it. For the most part, (not always) it no longer has the power to make me self-conscious when I write.

Without apology, I can say writing a memoir does require a good bit of navel-gazing. There’s no getting around that. The very nature of memoir is internal, psychological. It is first person point of view, however flawed and unreliable that interpretation of reality may be. (This is not an original thought on my part. See for example Brooke Warner’s thoughts at HuffPost Books.)

It is trying to figure out what the hell happened and then trying to make sense of it in a way that pulls the reader in. The writer’s journey becomes the reader’s journey, because the reader has had his own baffling, mind-blowing life. As the writer works things out on the page, the reader is right alongside her trying to come to grips with whatever blindsided her (the reader) on her own life journey.

If the memoir is powerful and offers a bit of wisdom and insight, that’s a win/win for the writer, the reader, and the world.

(This “without apology” business I learned from Eric Maisel and his Deep Writing seminar. He taught us to honor our writing, to make no apologies for it. He taught us to say this to ourselves when we need to: “That thought doesn’t serve me or my writing.” So if I get to thinking I’m navel-gazing, or if I hear someone else speak dismissively of memoir, I say to myself: “That thought doesn’t serve me if I want to complete my memoir and get it out into the world.”)

Getting back to those comments and questions I’ve gotten about memoir: A few people have a hard time with the idea that I reconstruct dialogue. How can I remember someone’s remark from twenty years ago, let alone an entire conversation? Aren’t I really just making things up? Isn’t that suspect?

If I’m making up the dialogue, what else might I be making up or misremembering? How else might I not really be writing the truth?

Considering how problematic memoir is, why not write a novel? Since I can’t guarantee 100 percent accuracy, why not write fiction? That way if I get something wrong it doesn’t matter. Fiction isn’t “the truth.”

Now, this is a loaded, much-debated issue with many facets. This is what I want to focus on here:

The Glass Castle

Another highly regarded memoir

My memoir is about growing up with a mother who had a serious mental illness. The illness was bad enough, but everyone pretended there was nothing wrong. No one spoke about or acknowledged the elephant in the room. Everyone seemed to feel it was perfectly fine to leave us kids alone with our mother, even though they certainly wouldn’t want to spend an afternoon with her. She could be, at best, decidedly unsociable and, at worst, hostile and scary.

(To be clear, my mother was a brave, strong, caring woman, and as good a mother as she could be.)

Not knowing what to do with my feelings of distress, sensing people didn’t want to deal with them and that no one was going to help us, I swallowed them. I pretended I was happy. I became ashamed of the dark feelings I shared with no one.

A parent in the throes of psychosis doesn’t really see her children. Her demons have all her attention, at least for the moment. The children become invisible to her, and the children know this. Between their parent not seeing them, and other people not acknowledging their unfortunate family situation, they begin to feel invisible.

They enter adulthood hollowed out, still feeling invisible. This they bring to their work, their relationships, their life. They pay a heavy price. They don’t really know themselves or why they do some of the things they do. Often, they don’t go after all they can in life. They hold back. They hesitate to take risks. Their lives are the poorer for it, and so is the world, which is robbed of their full talents, wisdom, and unique contributions.

As someone who wanted to write, who wanted to be creative, I found that I’d locked away my most essential, authentic self. I was alienated from my own shadow, my own best “material,” the very bedrock I should have been writing about. So I didn’t write, at least not for a long time.

One way to re-connect with one’s essential self is to write a memoir, as difficult as that process can be. One way to no longer feel invisible is to write a memoir.

I’m writing a memoir because I want to (and feel compelled to) tell my story, my own true story. I want to say what really happened, at least from my perspective. For me, writing fiction just won’t cut it.

Lord knows, the world is full of people far, far more wounded than I. In so many respects, I’ve been exceedingly fortunate. The best memoirists are not out to portray themselves as victims or to gain attention or sympathy. If they’ve made it as far as having a memoir published, they don’t need a reader’s sympathy. They are, among other things, trying to bring valuable stories into the world.

Wild

One of the most influential memoirs in recent years

I believe this is the age of the memoir, and it’s about time, because the world needs memoirs. (Though I acknowledge that reading memoirs isn’t for everyone.)

We’re bringing to light the dark secrets we hid growing up. We’re looking at what it means to be a family, what holds one together and what tears one apart. We’re hoping to change things so people like my mother get the help and support that is their right. We’re questioning long-accepted social values that have brought us to some bad places.

Just think of all the memoir writers – and readers – who no longer feel invisible, whose energy and creativity and wisdom are being liberated, helping all of us achieve a more enlightened world.

Next up: Back to books – The Buried Giant by Kazuo Ishiguro (I’m loving it.) Down the road on Excavating a Life: Memoir and shame.

Please share this post with memoir lovers, memoir writers and memoir skeptics. Do you have a favorite memoir? Do you dislike memoirs? Are you writing one? Tell us about it in the comments.

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.

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

Do genes shape our mental health?

Chromosome 2

Chromosome 2 (click twice for larger image)
Genome Management Information System, Oak Ridge National Laboratory
Human Chromosomes from “Human Genome Landmarks: Selected Genes, Traits, and Disorders” Poster, 2002. (Gene Gateway)

“I want to know what it feels like to have a close encounter with my DNA, this invisible, digital self that lies curled up like a fetus in every single cell of my body.”  – Lone Frank

When asked by the researcher if she has first-degree relatives with mental health problems, Lone Frank says yes.

Asked which ones, Lone says: all of them.

Depression, multiple suicides, bipolar disorder, alcoholism. With mordant humor, Lone Frank describes her family history. She’s forthcoming about her own three episodes of depression, then lies to the researcher about how many drinks she has each week. Fourteen glasses of red wine, for the health benefits. (But it’s really closer to twenty drinks or more. At least, that’s what she tells the reader.)

Lone, a Danish science journalist with a PH.D. in neurobiology, volunteered to take part in a major research project to study the connection between personality, an inclination toward depression, and specific genes.

In My Beautiful Genome: Exploring My Genetic Future One Quirk at a Time, she takes us along as she undergoes genetic testing, completes questionnaires and personality tests, and talks with multiple experts who interpret the results. Along the way she grapples with many questions.

Does she, indeed, have genes that predispose her to depression?

How does the environment factor in, as well as her upbringing and her own free will to pull herself out of depression and make cognitive and lifestyle changes to prevent it?

Does she unwittingly contribute to her own dark moods and temperament by building her own, unique environment – under the influence of her genes – that is conducive to depression?

On the other hand, does she possess certain genes or genetic variations that give rise to traits that help her excel in certain areas?

Do some genetic variations mitigate the effects of others?

Are there “good” and “bad,” “healthy” and “unhealthy” genetic variations, or simply variations that lead to different outcomes depending on one’s circumstances?

I won’t give away what Lone discovers, but she finds out a lot and, in the end, concludes the information is enormously helpful.

Let me stress that the average lay person could not mine their own genome for this information the way Lone did. Because she’s a journalist with a doctorate in neurobiology, she had access to sophisticated genetic tests and, more importantly, to experts who could interpret the results and how they might affect her personality and behavior.

Nonetheless, mining Lone’s genome with her is a glimpse into what may be possible for all of us, eventually, if we want it.

How much would you want to know about your genes and how they might shape your personality and behavior? Please share your thoughts in the comments.

Coming up, what Lone’s DNA reveals about her future health.

Quote from My Beautiful Genome: Exploring My Genetic Future One Gene at a Time, by Lone Frank, Oneworld Publications, Oxford, 2011.

Meeting the dark matter of mental illness

In the first pages of Lone Frank’s My Beautiful Genome, I discovered that what has always been a mystery is indeed still a mystery.

In a previous post, I talked about my mother’s schizophrenia, and how that had been a factor in whether or not my husband and I would have children.

Chromosome 1

Chromosome 1 (click for larger image)
Genome Management Information System, Oak Ridge National Laboratory
Human Chromosomes from “Human Genome Landmarks: Selected Genes, Traits, and Disorders” Poster, 2002. (Gene Gateway)

Lone tracked down the curmudgeonly and controversial James Watson (who, with Francis Crick, discovered the chemical structure of DNA in 1953) and, among other things, they discussed the heritability of schizophrenia.  Watson’s son has schizophrenia.

After several major studies involving some 50,000 patients, next to nothing is known about the heritability of schizophrenia.

No particular genes were found to be associated with schizophrenia (except in a very small percentage of cases), and the few genetic links found were not the same genes in all patients.

This is known as missing heritability. Lone Frank calls it the “dark matter” of the genome.

Watson and others theorize that the cause of schizophrenia and other diseases and conditions for which there is no obvious genetic inheritance may be due to rare variants – genetic changes not inherited from the parents, but which occur spontaneously in the afflicted person.

With a kind of despair, Watson said it may be ten years before the genetics behind serious psychiatric illness is better understood. This knowledge won’t help his son, of course. But, as Watson says, many people are suffering.

I would like to see the suffering of schizophrenia end, too.

Of course, Watson is a scientist, and he wants to know. So do I. Ten years doesn’t sound long to me, considering I’ve been living with this mystery for nearly fifty years.

This may be an illusion, but if I could better understand the dark matter of my mother’s life, perhaps it would be a comfort. We all want to make sense of our suffering.

I think My Beautiful Genome may be one of the most important books I’ll ever read in my adult life. For me, it’s personal, but it’s personal for all of us.  Genetics is giving us (and our children) powerful information humans have never had before.

Do you want to know what the new genetics could mean for your future health or the health of your children and grandchildren? What can genetics tell us about mental illness? How will knowing our own genome influence our romantic relationships and how we choose the person with whom we’ll have children?

Lone Frank wanted to know the answers to these and other questions. In future posts, I’ll tell you a little bit about what she found out.

Exploring Genetics 

Check out Cold Spring Harbor Laboratory’s DNA Learning Center.

%d bloggers like this: