Wonderful book club experiences

In the last week I’ve had two opportunities to discuss my memoir, Leaving the HallLight On, and most specifically bipolar disorder and surviving suicide at two book club meetings.

One was in the San Diego area, about an hour and a half from my home; the other in Palos Verdes Estates about ten miles south of where I live. Both of the invites came from long-time friends. Even so, I felt very honored to be asked.

And since I feel the intimacy and the openness of a book club discussion is a wonderful way to promote a book and a cause, I don’t mind traveling long distances to attend.

On Friday night I met with ten women. Yesterday eighteen women huddled around me firing questions left and right.

That’s how I like it. Though I might say a few introductory words, I like the discussion to be in the form of questions and answers. That way I can discuss what my audience wants to hear.

And both groups wanted to discuss the subject matter of my book – bipolar disorder and suicide, and how I survived my son’s suicide. They also wanted to tell their stories. No matter how many groups I’ve interacted with, it always turns out that most people in attendance know someone – a relative or a friend – who has been through a similar experience as mine. I always hear a story or two that breaks my heart.

Of the many people I talked to this week, only one was interested in how I put my book together and how long it took to get my book published. I found that interesting. These are groups of readers, not writers. They generally don’t want to hear about how a book is made, they want to know more about the story in the book.

For me that’s a good thing. I want my story to get out. I hope these women will join me in my mission to erase the stigma of mental illness and help prevent suicide. And from what I heard I’m confident they will.

  Left or Right?  

Revisiting some probing questions

Laura Dennis graciously hosted me on her blog, The Adaptable (Adopted Mommy Expat on Fridays, June 14, 21, and 28. She asked me a series of questions about my book, Leaving the Hall Light On, my son Paul's bipolar disorder and suicide, and my grieving and surviving process. I think her probing questions are worth repeating and showcasing here.

On Friday June 14, she asked:

Are There Early Indicators for Bipolar Disorder?

Laura writes, "The death of a child is unfathomable. The suicide of one’s young adult child after his suffering through years of a mental illness? Awful beyond words. … Painful to the point of, How do I get beyond this and not kill my own self? … Devastating, like, I’ll just live on anti-anxiety pills for the rest of my life. 

Which came first, the bipolar or the stress?

Laura – Paul–your eldest son and the one you lost to suicide, was a creative, gifted musician.

In trying to make sense of his death, you discuss events that could have indicated he was bipolar (or at least had an inherited tendency towards it), and life experiences that may have triggered the disorder’s onset.

With the emergence of bipolar–family history vs. stress … It’s almost a chicken or the egg question.

Whether the cause is a chemical imbalance in a still-maturing late adolescent brain, or rather the stressful experiences of that particular life phase (finding independence, first loves, embarking on a career) …  we may not know exactly.

You spend a large part of the first sections of your memoir, Leaving the Hall Light On,exploring these questions. Can you talk a little about what indicators you could have seen at the time–had you known more about bipolar disorder?

Madeline – Probably the first indicator was his reaction to the possibility that my husband would take a job on the East coast and move us away from where he grew up and was going to school. We actually went into family therapy about it, and Paul ended up staying with that therapist on his own for about a year. The job change didn’t happen so Paul was relieved, but as a result he became quite introverted around the house.

Other indicators: he was anal about his things, he was very tender after the older woman broke up with him, he was a night owl, though he walked a lot he didn’t get much exercise or eat very well, he was an underachiever in academics and an over achiever in music.

Another thing that should have indicated he had a problem outside the normal was an incident that happened while he was home for holiday, just a couple months before his first manic break: he became quite upset because his brother Ben had decided to exchange bedrooms with him at our home. Ben thought he wouldn’t mind because Paul had clearly let us know he wouldn’t be returning to California after he graduated from the New School in New York City. Paul minded very much and behaved quite irrationally about it.

Emotional triggers and bipolar disorder

Laura — I want to talk a little about triggers. As a teenager, Paul’s first lover was a much older woman. You mentioned–and I completely agree with you–that this inappropriate relationship made a huge impression on Paul, emotionally immature by comparison. I think the effect of this relationship on Paul is not to be discounted. It affected his later relationship with Janet, a woman his own age, who you deeply admired. Paul just couldn’t get it together with her; he had unrealistic expectations. He loved Janet deeply, but as Janet said to him: he loved not taking his medications more.

Madeline – I kick myself still about not reporting the older woman to the police. She was a child molester. But I worried I would lose my son as a result.

In those days he acted way older than he actually was so he always had an answer for everything. The other thing–something not in the book–is that he got her pregnant twice. The first time at his urging and of course our agreement, we paid for the abortion. The second time she aborted spontaneously, and he was very upset about it. Those situations weighed very heavily on this boy–just seventeen and eighteen at the time. It is no wonder we thought of Janet as his savior. Unfortunately, in the long run, Janet couldn’t go through another one of his manic episodes. When she found out he wasn’t taking his meds, she needed to move on.

***

On June 21, Laura delved into questions about:

Is it bipolar or not? Is it stress? Does he just in need of a good night’s sleep? Maybe she’s simply high-strung and likes to talk fast.  

She said, “Madeline talks a lot in her book about Paul’s musical ability, his creativity. And truly, not everything about bipolar disorder is bad. People with BPD have an amazing capacity at empathy and can connect with others on a deep level. They are often very artistic and creative. It’s just that the disorder is a double-edged sword: that empathy can lead to depression–feeling too much. Creativity and multi-tasking can quickly go from productivity in hypomania to delusional, sleepless mania. Knowing how to keep it in check is a life-long task and requires help from friends and loved ones.” 

Is it possible to manage bipolar tendencies?

Laura — My diagnosis was: well, you had a bipolar episode. If you have another episode, then you’re definitely bipolar. And my psychiatrist scared the living shit out of me saying that if I do have another breakdown, it’s going to be worse and it’s going to require a longer hospital stay.

I’m trying to figure out what was/is the difference between Paul and me.

I too liked being manic, but after my breakdown, I understood it’s not in fact a sustainable state. Over time, with therapy, proper diet, exercise and sleep I learned to manage my bipolar tendencies without medications. I can let myself become hypomanic, and in this state I can be very creative and productive, but I refuse to let myself go into the mania.

The mania is not truly a productive, creative state–it’s a destructive state. For me, it leads to paranoid delusions, hallucinations and really bad headaches.

What I want to know is … Is it a guy thing? Like, I was always a type A, perfectionist, people-pleaser, and I realized I’d be letting too many people down if I let myself have another breakdown. Was it catching it soon enough? (There’s also the possibility that I don’t have bipolar at all, but I doubt that’s true.)

Madeline – I think you’re lucky to be able to manage your bipolar tendencies. Paul tried all of that toward the end of his life – he even quit smoking – and I think he was doing well. He also worked every day at a very tedious and intellectual job, while successfully hiding his illness. But when Janet broke up with him all bets were off. That may truly be a guy thing. Kay Jamison says if you’re a young man, if you have bipolar disorder, and if a loved one leaves you, you are a candidate for suicide.

Also, almost two years passed between Paul’s first and second breaks. And he was off of medication most of that time. He graduated college and worked part-time jobs and played music gigs. He was doing so well, we all thought his diagnosis must be wrong. But when the second break started, at first with hypomania, it came on very strong and very fast. We brought him home from New York, but his behavior was hell for all of us until he was hospitalized again and resumed taking his medications.

I also don’t think he had a concern about letting people down if he had another breakdown. Paul was always a selfish guy. I think he just did what he wanted without taking our feelings into consideration. Maybe it’s your nurturing instinct that works in your favor – something Paul and maybe other guys don’t have.

***

On June 28, we discussed 

Death by Suicide – What we can learn about overcoming grief. 

Laura was curious as to how I overcame my grief–without prescription drug abuse, drowning my sorrow in alcohol, or ending up destroying my marriage.

Laura — I was very much enthralled with your description of your personal grieving process, how you naturally gravitated toward fully experiencing the horrific loss of your son, without going into denial or relying too heavily on coping mechanisms. Even as you were “pretending” to live–go out, work, exercise, socialize, you allowed yourself time to cry and feel sad. But over time, that pretending reminded you that you have so many things to live for, and that you could enjoy your life and remember Paul.

Madeline – My coping mechanisms were my working out, working, and writing. It’s as simple as that.

And now after almost fourteen years since Paul’s death I’m still using them – almost to the point of obsession. But they keep me sane and grounded. They keep me whole. Yet they don’t stop me from still having guilt and regrets, missing him, wondering what I could have done to save him.

Laura — Another aspect of your healing process was that you ended up doing it without support groups, without therapy and without religion.

But surprisingly, one tangible thing that seemed to provide some solace was the small, smooth stone with the word “son” etched into it. I’ve written before about grounding tools–small objects that can be used to keep a person from detaching and dissociating. For you, what purpose did this stone serve?

Madeline – I think it was just the holding on to it. It fit perfectly in my hand. and I could have it with me whenever I needed it. I needed it the most at night – I’d find it tight in my fist when I woke up. This was something Paul had never seen or touched so it was surprising it meant and still means so much to me.

The other things I treasure are photos of him, mementos that he left behind (books, records, CDs, Olympic pins, little things he kept in his room), things that remind me of him (my Buddha collection, jazz music, musicians he liked). And of course the biggest tangible grounding tool is my office. I converted his bedroom (the last room he lived in before his death) into my office.

Being there makes me feel like he’s always there with me.

Thank you, Laura Dennis. I look forward to your guest post here on Monday, July 1.

I have to brag

Emma, one of the three founders of the blog Book Geeks Unite, posted this review of Leaving the Hall Light On. It's so awesome, I have to share it.

"Madeline Sharples’ Leaving the Hall Light On chronicles one woman’s challenges, grief and ultimately her healing as she and her family battle one son’s seven-year struggle with bipolar disorder and his untimely death by suicide.   As I was searching for words to describe this book (words usually come easy to me), I could not find them.  What to say about this book?  Where are my words?  Can you say you enjoyed a book about a mother’s grief over her son’s death?  Not just his death, his suicide?  I cannot say I enjoyed reading about her pain.  What I can say is that this book completely engulfed my emotions.   There were several times while reading, I realized I was not breathing.  I had to remind myself to breathe.  I realized that is a sign that I am “in” the book.  The author had somehow allowed me in.  I realized she had written me into her thoughts and emotions and had allowed me access to her experiences.  I realized the images in the book were haunting me…the beautiful little boy, the handsome young man, the beautiful family of four, and then the family of three.  Then, I found my words.  This book is poetic.  It is honest.  It is raw.  It is real.  Mrs. Sharples has, in my opinion, poured her soul, in the form of ink, onto paper and decided to share it with the world.

"If you have ever been touched my bipolar disorder and/or suicide, this book is a must read.  

"If you’ve been touched by any mental illness, this book is a must read.  

"Even if you haven’t been touched by any of these things, this book will empower you to overcome any tragedies you’ll ever endure and inspire you to recover."   ~ Emma

Also please go over to her site, Book Geeks Unite, and enter to win either a signed paperback or an electronic copy (the giveaway ends at 11:00 am PST). And if you've read my book, please write your own review. I'd love to know your thoughts.

Kudos to celebrities who work to erase stigma

Catherine Zeta-Jones checked into a mental health facility this Monday for bipolar disorder treatment. And I applaud her. She is proactive and committed to periodic care. What’s so important is that this news, so openly provided, helps erase stigma.

"It’s not easy,” she says. “I’m not the kind of person who likes to shout out my personal issues from the rooftops, but with my bipolar becoming public, I hope fellow sufferers will know it’s completely controllable. I hope I can help remove any stigma attached to it, and that those who don’t have it under control will seek help with all that is available to treat it."

Many other famous people have been afflicted with mental illness. The list is long. Some have managed to control their disease; others have not.

I became interested in working to erase stigma after my son’s suicide as a result of his bipolar disorder. I wrote earlier about my conviction that his death might have been avoided had he not been affected by stigma.

My blog piece

Does the Stigma of Mental Illness Still Exist?

states:

"My son was a young adult, age twenty-one, when he was diagnosed with bipolar disorder. And throughout the seven years he struggled with the disease, I thoroughly believe the stigma of his mental illness stopped him from a program of treatment that might have saved him from his destiny, suicide.

From the literature I’ve read, mental illness in teens and young people is widespread. They typically shy away from discussing their illness because of the fear of being made fun of or bullied by their peers. That is stigma, that is what stops teens and adults from getting proper treatment.

The most important way to erase stigma is to open the conversation about mental illness. This conversation could cover several aspects:

What are the causes of mental illness? Knowing the causes will help erase stigma and enable a search for the ways to get help if needed. Mental illness is caused by a disease of the brain, actually a chemical imbalance in the brain, much like a physical disease such as asthma or mono. Physical illnesses need treatment, so do mental illnesses. Genetic factors also cause mental illness. Find out if there is any mental illness in your family, because if there is, you could be at risk. Mental illness was rampant in my family, and those genes were passed down to my son. Unfortunately we didn’t know enough to be prepared.

How do you know what mental illness actually looks like? According to an article by Hugh C. McBride, “Stigma Keeps Many from Getting Mental Health Treatment,” the symptoms are:

• Mood swings, agitation, and anxiety
• Altered sleep patterns (excessive sleeping or insomnia)
• Loss of focus or inability to concentrate
• Drastic weight changes (either gains or losses)
• Fatigue or exhaustion
• Loss of interest in hobbies, sports, school, or other activities that previously were important to the teen
• Decline in academic performance, frequent absences from school, and skipped classes
• Thoughts of death, expressions of wanting to die, discussions of suicide
• Substance abuse (including the abuse of alcohol, illicit drugs, and prescription pills)

What kinds of treatments are available? Therapy, short or long-term hospitalizations, and prescribed medications specific to the type of mental illness being treated are typical.

What are the dangers if mental illness is left untreated? These could be addiction to alcohol and/or drugs for those who are self-medicating. Suicide is also a real risk.

What are the forms of stigma? Now that it is clear that the stigma of mental illness still exists, it is important to know its forms: making direct negative remarks, calling a mentally ill person crazy, portraying a mentally ill person as a sociopath or violent in films and television, or characterizing a mentally ill person as weak or stupid."

Another actor, who works hard to erase stigma though not afflicted with mental illness herself, is Glenn Close. She has a sister with bipolar disorder and a nephew with schizoaffective disorder (my son was diagnosed with both).

Glenn founded the organization Bring Change 2 Mind. It’s mission: to emerge as the world's most effective organization working to eradicate the stigma and discrimination surrounding mental illness through widely distributed Public Education Materials based on the latest scientific insights and measured for effectiveness.

Thank you Catherine and Glenn and all the other celebrities who have made their mental illness public. Your good work toward erasing the stigma will go a long way to save lives.

Could writing help the Boston survivors?

The bombings in Boston have left me in tears. Every time I hear the news, see the photos of those who died or were wounded, I want to curl up and block it all out. It is much the way I felt after my son took his life in 1999. These kinds of tragedies bring all those sad feelings back.

Perhaps this will help. In my memoir, Leaving the Hall Light On, I told how I survived through writing. It is my belief that those who have experienced such a tragedy – and I suspect that is everyone – need to find a creative outlet. Hopefully the survivors of the Boston tragedy will also find their way.

Here’s how writing a memoir helped me heal:

Writing has been part of my life since I was in grade school. However, when my son was diagnosed with bipolar disorder and after his suicide, I began to write down my feelings daily. I needed to. Writing in my journal became an obsession, a balm, and the only way I could express my feelings. It gave me a way to organize my fears, pain, and thoughts. I had used journaling during an earlier stressful period of my life to rant. This time I turned to writing during what turned out to be the most stressful time of my life.

Three months after my son Paul’s death I also signed up for a writing class. The assignment was to bring in a journal entry to share with the class each week. At first I was afraid to put my grief out there in public. But, when I apologized for continually writing about the same subject matter – my son and his illness and death – in my assigned journal entries, my instructor said, “It took Dostoyevsky five hundred pages to write Crime and Punishment, you have a long way to go.”

This same instructor also taught me to write with a deep voice, meaning that I should share the deepest, darkest truths of my life. Come from the deepest part of your belly, he said, encouraging me to bare all my secrets in my writing. And after several years of patiently listening to my material, he told me I had to put my story into a book. He and the rest of the class felt certain there were people who needed to know my story and who could be helped by it. So I kept writing my journal entries – not only for class, not only as a comfort to myself, but also for material that I could use in creating my memoir. I also wrote poems.

About this time I met a young woman – a former literary agent – who read my poetry and some of my prose and suggested I organize my memoir based on the sequence of my poems. For a while she gave me advice and writing prompts – all useful to the content of my book. Then when I finally had a book together with each chapter starting with a poem, I hired an editor, who was a writing teacher, to read and give me comments chapter by chapter. And once I incorporated her comments into my draft, she read the book as a whole and gave me more comments. I used her comments to revise my draft again and then began querying agents and publishers. I sent out that completed draft out when one of these prospects asked to see my manuscript.

When I finally had a publishing contract I hadn’t read my manuscript in over two years. The first thing I did before embarking on the hordes of revisions I had committed to do before publication was read my memoir front to back, noting typos, repeats, inconsistencies, and most important of all, places where the information was outdated. It took me five months to complete the revisions with the help of three writer friends. I knew I was finally finished when I stopped thinking about what more I could do to it and when I felt comfortable letting it go.

Writing was my therapy. It became a habit and a huge help in getting myself out of the mire after my son’s death and the tragedy that had hit my family.

I thought if I could tell my story in the most truthful and realistic terms possible, I could help other parents with children with bipolar disorder that in many cases results in their suicide. Otherwise I felt it wouldn’t be useful to anyone – including me.