Schizophrenia and family caregiving   

A Book Club Discussion Guide to Shot in the Head, a Sister’s Memoir, a Brother’s Struggle

This story can impact the reader at several levels. However you approach it – as personal memoir, curiosity about the reality of schizophrenia, or as a simple story of how a family came together to care for a loved one with a serious mental illness,  I hope these questions will help to stimulate some good discussions.

1.    Some of the scenes in Shot in the Head take place more than fifty years ago.  Others involve emotionally-charged situations.  The author states that the book’s dialogue and sequence of events are her “best efforts to present what really took place.” How is its accuracy important to your experience of the book?  What do you expect when you read a book classified  as memoir?

2.    The author describes her lack of involvement in Paul’s care in the first few years of his hospitalization.  What factors contributed to that distance?  How does she change over the course of Paul’s illness?

3.   As much as this book is about Paul and Katherine, it is also about the whole family, especially the other siblings – Monica, Ilene, Patrick, Sheila, etc.  Did you identify with any of the siblings? Which one?  How did ​their relationship with their brother change during the course of his illness?  Where do you see the changes?

4.     Paul’s care changes dramatically over his lifetime.  How do Federal and State legislation impact his care?  What role do you think public agencies, the medical community and insurance companies should play in the care of someone like Paul?  What role should be played by the family – parents, siblings, children? What help do family caregivers need?

5.    How is the care received by people who suffer from brain diseases different from the care received by people who suffer from malfunctions of other body organs such as the kidneys, heart or pancreas?  What factors have led to these differences?  Do you think a person with serious mental illness should be forced to accept treatment? 

6.    Society also deals with brain disease differently than other types of illness.  For example, if your neighbor has breast cancer or a heart attack, you bake the family a cake or offer to help get the patient to medical appointments.  How do you react if you find out a neighbor has bi-polar disorder or schizophrenia?  Why?  How can this change?  

7.    Which of the stories about Paul- things he did, things that happened to him – touched you the most?  

8.    When Paul begins to suffer pulmonary problems, he is diagnosed first with pneumonia.  How do you think his cognitive impairment impacted the level of care he received?  How did it impact his care from the oncologist?

9.    How did his care change when his sisters had him transferred to a nursing home?  How did his behavior change?  Why do you think it changed?

10.    The author uses several genres to put forward her story – narrative, emails, poetry, pictures.  How do these different genres impact the reader’s enjoyment and understanding of the issues and the characters?

11.    Do you believe Paul is better or worse off when he is released from the state hospital?  Give examples of how his life changes.  How do we balance the trade-offs between a person’s desire for freedom and the knowledge of the medical establishment that he or she needs supervision?  Where else in our lives do we see similar trade-offs?

12.  Has your perception of mental illness changed since reading Shot in the Head?  If so, how?

 

My 2016 Thank You List

 

The week after Christmas has become a time of reflection for me, and with recent events fresh in my mind, I would like to end 2016 with a list of ten things I am thankful for.
1.  To Carrie Fisher and Debbie Reynolds, thank you for finding your way back to each other during your time on this earth. You survived times when one or the other behaved badly and still found a way to show each other how much you cared for one another. You are role models for all the mothers and daughters out there.
2.  To Congressman Tim Murphy of Pennsylvania, Congresswoman Eddie Bernice Johnson of Texas, Senator Chris Murphy of Connecticut, and the dozens and dozens of mental health advocates from D.J. Jaffe, to the folks at Treatment Advocacy Center, to Teresa and Anthony and Amanda and Kathy and Laura and Ilene and Joy and G.G. and Jennifer, and the rest of the gang. Thank you for working so hard to pass legislation to improve the lives of people with serious mental illnesses.
3.  To my siblings. Thank you for coming to my house with your enthusiasm and appetites for Thanksgiving and Christmas. Without you, how would I celebrate the holidays?
4.  And thank you for so thoughtfully leaving me so many of the scalloped potatoes. I admit that I DID complain after you took home almost every last shred of Thanksgiving left overs, leaving me only a little stuffing and pumpkin pie, neither of which I could eat because I am gluten and lactose free. Remembering the locust-like activity of that get together, for Christmas I had prepared two vast casseroles of scalloped potatoes, omitting the onions and substituting rice flour and lactose free milk for the wheat flour and cream that the recipe called for.(The Joy of Cooking said to use three pounds of potatoes for every six people. With 22 people expected, I had peeled and sliced ten pounds of them.) About seven pounds were left for my husband and I to enjoy this week. A nice change from chicken and white rice. So thank you.
5.  To my husband and children, thank you for heeding my request for events instead of things for Christmas. I look forward to our dinners and shows in the coming weeks. (See item #1)
6.  And to the dozen or so agents and small press publishers who declined any interest in my latest manuscript, thanks to you, as well. Even to the three or four who didn’t even send a rejection note, I am sure you were just worried about hurting my feelings. I know that the extra time I will now have to mull over what to delete, what to add, and where to simply try to “elevate the prose” will help make it a better book.
7.  To Comedy Central and Jon Stewart. Thank you for giving me the gift of more sleep. Over the previous year I had stayed up too late watching Jon and Larry. Without those old buddies I am going to bed earlier and getting close to seven hours of sleep per night.
8.  To Bosch dishwashers, for making an appliance that actually gets my dishes clean, and makes so little noise I can hardly tell it is on—although, I do wonder if it couldn’t have been possible to do this in less than two hours. Perhaps in the next model?
9.  To my nutritionist, Amy, and whoever invented the FODMAP diet. Thank you for discovering that essentially everything I eat gives me gastro-intestinal distress. If I avoid not just wheat, shellfish and dairy, but also onions, garlic, apples, peaches, baked beans, honey, and a list of about thirty other seemingly random food items, I will feel great. Of course, this leaves little on my OK to eat list—primarily chicken and plain white rice—but there you go.
10. Which brings me to item number 10. To chicken. To all the chickens—and I should probably add rice plants—who have sacrificed and will sacrifice their lives so that I can eat homemade chicken and rice soup (with no onions, garlic, soy, wheat, MSG or high fructose corn syrup) everyday for the rest of my life, thank you. And now on to 2017

On Writing a Memoir

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“I should really write a memoir some day.”  Have you ever said that?  Many people tell me this when they read my memoir.  Most of us seldom write anything longer than a five sentence email or a ten word comment on someone’s Facebook page, and then suddenly we’re thinking about writing our life story.  Other people have played with the idea of writing for a long time.  Whether we are still in our thirties or into our sixties and retired, the idea calls to us.

We humans are story tellers, going back to the days of the hunting scenes painted on cave walls, and continuing through to our Facebook posts about the baby’s first birthday party.  The memoir is heir to that tradition.  “I need to tell somebody about this.”

Maybe, like me, you’ve just been through nursing someone through their final illness, and you feel like you are going to burst with all you’ve been through. How that last afternoon you spent with your brother, eating ice-cream and listening to Stevie Wonder stretched, out like a glorious bouquet.  Or the rainy October afternoon when your mother lay back on her pillow and told you about the pony she had when she was a girl in Slovakia, before she came to the United States.  “I had a pony once,” she says. “I never told you about my pony.” She slips into Slovak and doesn’t know it. Her wan face lights up with that last day with the pony and her hand moves faintly, brushing it and feeding it an apple. “So sweet,” she murmurs over and over, her eyes closed, a smile on her lips.

Or you want to tell everyone about the day back in 1973 when your newborn baby wouldn’t stop crying. Your husband has gone back to work and you and the baby are alone for the first time. You pick the baby up and walk from the nursery into the living area, do a loop around the kitchen table, bathrobe sash dragging through the crumb-littered floor, and you look down and see her little face finally relaxing into sleep. Little half sobs, then quiet, slow breaths. You keep pacing slowly around the apartment, afraid to stop, almost asleep on your feet, until you are crying softly with a mixture of love and exhaustion.  A neighbor women you don’t know very well knocks on the door and insists on holding the baby while you take your first hot shower in two or three days.  When you emerge from the steamy bathroom, the baby is asleep in the bassinet, and your new friend has swept the kitchen and made a pot of coffee. That story needs to be told, you have said many times.  I love that woman.

The time your purse was stolen while you were asleep on a train in Germany and the old couple in the American Express office insisted on loaning you some money.  The summer you were a camp counselor and that tall, dark-eyed older boy tried to force you and you almost agreed. That horrible, sexist boss you had.

The stories are good.  Now to transform them into a good memoir.

For this we need to merge them with another tradition, that of the diary or personal journal.  Like Anne Frank, we sometimes feel the urge to pour out our souls on paper, thrashing through the disappointments and confusions of daily life with a twist–not just reciting the facts, but considering how it makes us feel.  We wonder, pen in hand, how to make sense of the non-sensical.  We relive the unfulfilled longing, the fear of death, the anguish of loss. Special moments call to us, and we return to them in our heads, finding solace, anger or melancholy in our repeated visits.

And this is what makes a memoir worth the incredible hours and hours of work to write and rewrite: finding that special story arc that zings, that blend of incident and truth-telling, humanity and spirituality.  A group of anecdotes may just sit there.  But when they distill a story of growth and change, when your heart and soul bleed onto the page along with a compelling narrative, that’s a story worth telling.

That’s what happened to me when I found myself caring for my mentally ill brother after my parents died.  And I couldn’t stop writing.  “I was shot in the head,” my brother Paul said to the daughter of his elderly roommate at the nursing home. “How awful,” she said to me when I arrived later that day.  I shook my head.  “Well, not really,” I began.…

When you find this story, keep writing.

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Katherine Flannery Dering earned an MFA from Manhattanville College in 2012 and also holds an MA in Spanish Literature from SUNY at Buffalo and a BA from Le Moyne College, in Syracuse, New York, as well as an MBA from the U of Minnesota at Duluth.  Her memoir, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle,” was published in 2014, and is available on Amazon ( http://tinyurl.com/pakb5ga ) and at Barnes & Noble ( http://tinyurl.com/mkdnh5o ).  She is working on some new stories in her book currently in progress.