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

Body and mind

What are the pros and cons of getting genetic testing if your parent has Huntington’s Disease? What about dating and relationships?

A resident in the pediatric intensive care unit wants patient education information about shaken baby syndrome and traumatic brain injury.

A mother whose child has just been diagnosed with epilepsy wants to know if a special diet will help.

At teaching rounds, medical students on their first patient rotations are led through the process of making a diagnosis. “He has weakness in his arm and leg,” says the neurologist. “If his symptoms are on the right side, where is the lesion in the brain?”

These are some of the situations I’ve seen as a medical librarian. Sometimes we forget how precious and fragile are our bodies and minds. We can walk, run, speak, love, laugh, cry, sing, read, write, think, create, make plans, give comfort, enjoy a meal with family and friends. Until one day something changes.

I know from personal experience a mind can become irrevocably altered and an identity can vanish seemingly overnight. Which is probably why I am so fascinated by medicine, especially medicine having to do with the brain and behavior.

Here are some of my favorite books (fiction and nonfiction) about illness, recovery, medicine, the search for cures and miracles, and the people caught up in it all: medical professionals, researchers, patients and families. If you follow my blog, a few of the books will be familiar.

FICTION

I Know This Much Is True book cover

I Know This Much is True, by Wally Lamb

“On the afternoon of October 12, 1990, my twin brother Thomas entered the Three Rivers Connecticut Public Library, retreated to one of the rear study carrels, and prayed to God the sacrifice he was about to commit would be deemed acceptable.”

This is the best evocation of schizophrenia I’ve ever read. Wally Lamb is my hero.

By the way, Wally’s newest novel, We Are Water, was just published this month. It is on my nightstand in my little stack of books to read.

Saturday book cover

Saturday, by Ian McEwan

A neurosurgeon. Huntington’s Disease. A home invasion. A poem.

(The poem nestled deep within the plot sparks a crucial turning point. It also happens to be one of my lifelong favorites.)

State of Wonder book cover

State of Wonder, by Ann Patchett

“She was not terrified that the patient would die or she would lose the baby, she was terrified that she was doing something wrong in the eyes of Dr. Swenson.”

“I write with unfortunate news of Dr. Eckman, who died of a fever two nights ago. Given our location, this rain, the petty bureaucracies of government (both this one and  your own), and the time sensitive nature of our project, we chose to bury him here in a manner in keeping with his Christian tradition….Despite any setbacks, we persevere.”

We Are All Completely Beside Ourselves book cover

We Are All Completely Beside Ourselves, by Karen Joy Fowler

“…I’d made a careful decision to never ever tell anyone about my sister, Fern. Back in those college days I never spoke of her and seldom thought of her…..Though I was only five when she disappeared from my life, I do remember her. I remember her sharply – her smell and touch, scattered images of her face, her ears, her chin, her eyes. Her arms, her feet, her fingers.”

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MEMOIR

God's Hotel book cover

God’s Hotel: A Doctor, a Hospital, and a Pilgrimage to the Heart of Medicine, by Victoria Sweet

Inspired by Hildegard of Bingen (12th century German mystic and medical practitioner), as well as her own instinct for compassionate, attentive care, Dr. Sweet practices “slow medicine” at the last almshouse in the U.S. as it transitions to the modern age. We should all have a physician like Dr. Sweet.

My Beautiful Genome book cover

My Beautiful Genome, by Lone Frank

“…we are each of us temporary depositories of information that has an almost eternal life, and which is passed on and on and on…”

“I am what I do with the beautiful information that has flowed through millions of years through billions of organisms and has, now, finally been entrusted to me.”

Five favorite books and blogs

Many thanks to Claire McAlpine, who tagged me in a Five Favorite Books challenge, which I’m to pass on to five other bloggers. Here goes, but before you read on, be sure to visit Claire’s delightful blog, Word by Word. Claire, who lives and works in the south of France, is a prolific, passionate reader who never fails to inspire me when I’m wondering which book to read next.

Of course, it’s impossible for me to name my five favorite books of all time, so here are five books I love that happened to come to mind as I sat down to write this:

I Know This Much Is True book coverI Know This Much Is True, by Wally Lamb.  I’ve read all of Lamb’s novels, but my favorite is I Know This Much Is True, about twin brothers, one with schizophrenia. Dominick Birdsey is an unforgettable character, and so is his brother, Thomas, who battles the demons of serious mental illness. My mother had schizophrenia, so for me this book is especially meaningful. Lamb’s portrayal of the illness is spot on. I Know This Much Is True blends comedy and tragedy as Dominick soldiers on in the difficult odyssey that is his life, the kind of real-life struggles we can all identify with. You just won’t want to stop rooting for Dominick, and I, for one, couldn’t stop reading until I found out whether he would end up with the love of his life.  I was taken with the darkly comic opening involving a librarian who has an especially trying day. (I read this before I knew I was going to become a librarian.) Check out Wally Lamb on Facebook. He’s a generous, down-to-earth author who loves talking with his readers.

In October, 2013, Lamb will publish his newest novel, We Are Water. In this video, Wally Lamb tells how We Are Water came about. Listening to his story will make you want to get the book, which I’ll be writing about in a future post.

Jane Eyre, by Charlotte Bronte. I’m a romantic, partial to female gothics, and there is the undercurrent of madness, which “transfixes” me (as Mr. Rochester would say). I read this in high school and have been fascinated and mystified by it ever since. Has anyone seen the most recent movie incarnation? I thought Mia Wasikowska and Amelia Clarkson (young Jane) were fabulous. And Judi Dench, of course.

When We Were Orphans, by Kazuo Ishiguro. When I was looking for a hyperlink to When We Were Orphans, I was surprised Wikipedia authors say it is regarded by some as Ishiguro’s weakest book. I don’t see that at all. For me, it eloquently captures childhood loss and its lifelong consequences, and there’s also the fascination of Ishiguro’s typically unreliable, self-deluded narrator. Except in this case I think the narrator comes to a sad, more realistic understanding of himself and the world. I’ll say no more since I’d like to write further about this book in the future.

Plainsong, by Kent Haruf. I loved visiting this small Colorado town and meeting the simple, kind, and decent people there. It does my heart good to know there are writers like Haruf creating fictional worlds like this one. I was swept away by Plainsong and the sequel, Eventide. Haruf makes writing look easy, but this sort of simplicity isn’t easy at all. I’ve not had the pleasure of reading his newest book, Benediction. Can’t wait. I’ll be sure to write about it here.

David Copperfield, by Charles Dickens. I read this in high school, too, and haven’t read it since then, so I want to revisit it sometime soon. Another deprived childhood story.  (Do you see a trend here?) After I read David Copperfield I felt I’d lived an entire life. This is a great book to read when you are young and just starting out, and then at least once again when you’re looking back. I believe there was a PBS version that aired in the dark ages when I was reading the novel. It, too, was wonderful.

FIVE BLOGS I LIKE:

A Leaf in Springtime  Sheer exuberance in writing and photography, by Sharon, who is Chinese (born in Malaysia) and now living in Finland.

The Hiker Mama  I love the Pacific Northwest, and I wish this blog had been around when we were hiking with our sons. Jennifer and I had the pleasure of taking a class together taught by Christina Katz.

Fine Little Day  Because I’m half Swedish and I love fabrics and country houses and all sorts of beautiful domestic things.

66 Square Feet  A tiny terrace garden, seasonal living, cooking in New York City, and travels to South Africa, by Marie Viljoen. Just beautiful, reminds me of my big city days.

Flowery Prose  Plants, veggies, flowers, gardens, the outdoors, and lots of fascinating information about 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

What genetic tests tell us about our health

Chromosome 4

Genome Management Information System, Oak Ridge National Laboratory

I am what I do with the beautiful information that has flowed through millions of years through billions of organisms and has, now, finally been entrusted to me.    Lone Frank

Genetic tests for consumers now cost as little as $99.

Send in a sample of your DNA (usually a swab of saliva) and you’ll be notified of the results by mail, email, or online. (In some states, such as New York, genetic tests must be requested by a physician.)

Science journalist Lone Frank purchased a genetic test kit and sent in her sample of saliva. In My Beautiful Genome, she describes going online and finding out her risk for Alzheimer’s, glaucoma, asthma, gallstones, arteriosclerosis, and other conditions.

Breast cancer is Lone’s number one concern; her mother and maternal grandmother died relatively young from it. At first, she’s relieved, because the test says she has a 7.7 percent risk for breast cancer, lower than a woman’s average risk of 12%.

But when Lone interviews the founder of the genetic testing company, he advises her to get a BRCA gene test because of her family history. Mutations in these genes can mean up to an 80% risk for breast cancer.

When Lone tries to get a BRCA test, she’s turned down, because the testers want evidence of breast cancer in her family going back one more generation, and Lone doesn’t have that information. Nonetheless, she manages to convince them to give her the test.

I’ll permit myself one spoiler and tell you Lone doesn’t have the BRCA genes. She’s tremendously relieved, of course – between that and her lower-than-average 7.7 % risk, maybe the genetic roll-of-the-dice is in her favor.

Not so fast.

The genetic counselor tells Lone that, because both her mother and grandmother died of breast cancer, there could be another risk factor at play – a genetic anomaly for breast cancer that hasn’t been discovered yet.

Let’s say another genetic risk factor for breast cancer comes to light and Lone has it. That would mean her risk rating would increase from 7.7% to something much higher.

The risk ratings from consumer genetic testing are based on limited information, because there is so much we don’t know yet about the human genome and disease. As more of the human genome is decoded, people’s risk ratings change.

The fact of the matter is, every human has over 20,000 genes, and consumer genetic tests examine only a handful of them.

So, just how useful are these tests?

I asked my general practitioner, an excellent physician, what he thinks of direct-to-consumer genetic tests. He’s not enthusiastic.  They yield information that’s incomplete, possibly inaccurate, and worrying. He believes specific genetic tests for specific conditions – the kind of test you’d obtain after a discussion with your health care provider – can be useful, but only if you’re prepared to act on the information. A woman may get a BRCA test, for example, with the intention of having a double mastectomy if the results are not in her favor.

I’m not going to be asking him to request a genetic profile for me anytime soon. When I first began reading My Beautiful Genome, I considered it, but I’m not convinced I’ll learn anything useful, I’ll wonder about accuracy and, depending on the results, I’ll probably worry.

There are lots of other drawbacks, too, which Lone discusses in her book. But she gives equal time to the potential benefits of genetic testing, and writes about what is being done on the cutting edge. Some of what she has to say sounds like science fiction, but it’s really happening.

Lone Frank wants very much to know her own genome; I’ve decided to postpone exploring my own DNA for health reasons until more is known. If and when I do, I’d want to discuss the results with a genetic counselor or other qualified expert.

Still, I’m excited about the prospect of someday knowing something about my own genetic code. I hope that day isn’t too far away.

And if I ever have the opportunity to participate in a research study about the genetics of something I care about – schizophrenia, for example – I’d volunteer in a heartbeat.

Would you choose to explore your DNA with a genetic test? Have you already been tested? What do you think of consumer genetic tests? Please share your thoughts in the comments below.

Would I have my DNA analyzed for ancestry? That’s another story. In my next and last post about My Beautiful Genome, I’ll write about what Lone learned about her genetic roots.

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.

She wanted to decode her beautiful, quirky genome

…we are each of us temporary depositories of information that has an almost eternal life, and which is passed on and on and on…           Lone Frank, My Beautiful Genome

Staring at the luminous model of the strand of DNA on my computer screen, a sculpture of great beauty, perfect function, and masterful design, I wondered. Who is the designer? And is this a question that even makes sense?

I say perfect function but, when it isn’t perfect, there can be disease, pain, suffering. Or simply quirkiness that doesn’t amount to much, just makes you a little different – a bit of rheumatism in your right big toe, for example, so you can’t wear high heels.

My medical librarian colleagues and I were learning how to search the data generated from the Human Genome Project and other ongoing genetics-based research. Our instructor, a bioinformatics librarian with a PH.D. in molecular biology and years of research under her belt, showed us how to look up the gene associated with cystic fibrosis in humans. We found a map of the gene’s location on a specific chromosome and links to places where you can order a clone of the DNA for research.

And over the course of the two-day class, our instructor, who is also a storyteller, told us the tale of research into the human genome, the explosion of data that’s resulted in a very short time, and how far we’ve yet to go.

My Beautiful Genome book coverA few months later, I discovered Lone Frank’s My Beautiful Genome: Exposing Our Genetic Future, One Quirk at a Time and added it to my reading list. Over the next weeks, I’ll be reading and discussing it on Books Can Save a Life as I decide whether or not to explore my own beautiful, quirky genome. I’m reasonably certain I will explore my genome unless I’m persuaded otherwise. It’s not a matter of if, but when. There is so much turmoil and confusion surrounding consumer-based genetic testing, I may wait until things settle down a bit.

The lure of this kind of knowledge – the secret of my own, one-of-a-kind, unlike-no-other-in-the-history-of-the-world genetic makeup – is something I don’t think I can resist for long, though.

As with everyone else, it’s personal.

My genetic make-up was of special concern years ago when my husband and I were deciding whether to have children. We’d gone to a genetic counselor to find out the chances of our children inheriting my mother’s schizophrenia. Fortunately, they were quite low. The counselor could tell us this by simply taking a family history and looking at the heritability data of the grandchildren of people with schizophrenia.

More recently, I was curious to know what the Human Genome Project and other research has revealed about the heritability of schizophrenia, and what a look at my signature genome might tell me. I’ll be exploring that, among other things, as I make my way through My Beautiful Genome.

Possessing this kind of personal genetic knowledge will become commonplace, I believe, and learning how to live with it ethically, in a way that will benefit humanity, will be one of the great adventures of our time.

Do you think we’re overreaching, like the mythic Prometheus? Wanting to know more than is good for us and we can responsibly handle? Please comment if you have thoughts about this.

Mindfulness Meditation

In My Beautiful Genome, Lone Frank talks about how everything we perceive is filtered through our brains, which are influenced by our genes, and how our behavior may be genetically determined. I just happen to be starting a mindfulness meditation class that will take place over the next several weeks. It will be my second time through this type of meditation instruction, a refresher that will bolster the meditation practice I began five years ago. So, while I read My Beautiful Genome,  I’ll also be highlighting some of my favorite books about meditation. If you’ve tried meditation yourself or have a practice, please join in the discussion.

Quote from My Beautiful Genome: Exposing Our Genetic Future, One Quirk at a Time, by Lone Frank, Oneworld Publications, 2011.

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