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Finding Joy and Life Lessons in Loss

Publishers inspire those overwhelmed by disease and loss with books that demonstrate the strength of caregivers' unconditional love.

By Jim Barnes

According to the Alzheimer's Association, one in ten persons over 65 and nearly half of those over 85 have Alzheimer's disease today, totaling about four million Americans. Unless a cure or prevention is found, that number will jump to 14 million by the year 2050.

Eventually, most people with Alzheimer's become unable to care for themselves, so their caregivers are also affected. In a national survey, 19 million Americans said they have a family member with Alzheimer's, and 37 million said they knew someone with the disease. These caregivers often become drained mentally, physically, and even spiritually. "And for what?" asks the frustrated caregiver. "For death to come and take our loved one away?"

There is a group of authors and publishers across America whose voices are bringing respite to the overwhelmed and saddened caregiver. Brenda Avadian, M.A., aka The Caregiver's Voice, has published two books inspired by the joyful moments she shared while caring for her father who passed away earlier this year from Alzheimer's. Avadian has achieved an international reputation for her passion, enthusiasm, and tireless efforts to help caregivers. Organizations invite her to speak about her experiences and her critically acclaimed first book on the topic, "Where's my shoes?" My Father's Walk Through Alzheimer's, published by her own North Star Books.

During the book signings that followed her keynote addresses, audience members began to approach and say, "You think that's a funny story, let me tell you what happened to me!" After hearing these peoples' touching anecdotes, Avadian decided to invite them to submit their stories for her latest book, Finding the Joy in Alzheimer's: Caregivers Share the JOYful Times. It is an inspirational book of stories demonstrating the strength of caregivers' unconditional love.

Can there really be JOY in Alzheimer's? "YES! We laugh so we won't cry," says Avadian. "When you consider the seriousness of a memory-robbing disease like Alzheimer's that takes away loved ones piece-by-piece, it's amazing how many still find the JOYS. One story contributor tells another, and before you know it stories are coming in from everywhere." The momentum kept growing, and now she's working on Volume II. Much like the Chicken Soup for the Soul(r) series, Avadian is planning a series of Finding the Joy books on various illnesses and diseases, including cancer.

"It is my passion to honor of my father's journey and those who walk with Alzheimer's and other dementing illnesses," says Avadian. "I feel very fortunate to be able to contribute so much and at so many levels." Helping those with Alzheimer's and their families has grown out of a life of service as a university professor, consultant, community advocate, speaker, and corporate trainer. "Almost all of us want to have some impact in our little corner of the world. Often we wait until we are older to give back - but for some it is too late."

Born in Milwaukee, Wisconsin, Brenda now lives in Lancaster, California with her husband David and their two cats. At 42, she has been "giving back" most of her young life. More than a decade ago the Governor's office of Kentucky recognized her contributions by commissioning her a Kentucky Colonel. She extended this giving at age 39 by donating a major portion of the sales of "Where's My Shoes?" She and North Star Books continue to donate about 40% of the cover price of her books. With so many publishing companies struggling to make a profit, this is hard to imagine; yet Avadian is committed to supporting the efforts of groups and organizations that help people with Alzheimer's. With the planned release of the Finding the JOY in Cancer book, she will donate those proceeds to cancer-related organizations.

Considering the steep discounts given to distributors and wholesalers, how does she cover the costs with such a high level of donating? "Barely, but I do apply 100% of my speaking fees to promotion and other expenses. So far, I am able to draw upon and share my experiences in a manner that seems to move audiences," she says somewhat humbly. "I firmly believe that if I stay true to my mission, things will work out over time."

"As the momentum builds, I may finally be able to pay my designer what she's worth and buy more ad space," she says jokingly. She explains that many organizations help her, knowing her mission to help others, and that after three years she has still not drawn a salary for her 14-hour days.

Does she feel she is having an impact? Is it all worthwhile? "Absolutely!" she says, citing the 150 emails she wakes up to each day. "I realize that this is the hard work it takes to become an 'overnight' success."

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Note: November is both National Alzheimer's Awareness Month and National Family Caregivers Month. Visit the Alzheimer's Disease and Related Disorders Association on the Web. When the battle against a disease like Alzheimer's is over and the loved one dies, many people have trouble getting on with their lives. One such person had an experience that inspired a new book on the topic:

Debbie Gisonni thought she had it all. A loving husband, a lucrative career, a big house...

But that was before her mother got a brain tumor and her sister committed suicide. That was before her father got bone cancer and her favorite aunt got breast cancer. "Then everything I had fell apart. And when it came back together again, it looked very different. Between 1990 and 1994, I lost four family members in four years. My mother Vita was the last one to go after a ten-year battle with chronic illness and disability."

Four years after her mom died, Gisonni decided to leave her career and stock options behind and "do something more meaningful with my life." What emerged was her first book, Vita's Will: Real Life Lessons about Life, Death & Moving On.

"It's a story about my family experiences and the most important life lessons I learned in the process. The discoveries I made changed my life forever and I decided to share them with readers. I hope they will help people deal serenely -- or at least sanely -- with their own life challenges, from the tragic to the trivial."

"What started out to be a book about death, became a book about life," says Gisonni. "What's important in it and why it's worth living no matter what difficulties we face. Alongside the narrative of the events are my nightly chats with God, and then a one sentence "real life lesson" at the end of each chapter. Having a business persona for so many years, I never imagined that I would be including my prayers in the book, but I realized that in order to help people in the way I intended, I needed to expose all of my emotions. The prayers ended up becoming the inner struggles we all have but are afraid to show, such as vulnerability, anger, guilt, and helplessness."

In this time of grieving over our nation's recent tragedy, Gisonni's 44 real life lessons are refreshing daily reminders for us all. Here are a few of them:

* "Your connection to others, inside and outside the family, gives your life its meaning."
* "You can't always save the people who are most precious to you."
* "The anger you project onto others can destroy you."
* "Real strength is sometimes the acceptance of unavoidable loss."
* "Sometimes you need to be face to face with life and death to realize we are all more alike than different."

Gisonni self-published Vita's Will at iUniverse, and it has received good reviews and considerable media attention. One reviewer wrote, "Besides a skillfully written, compelling narrative, what elevates Vita's Will above the ego-tripping triteness often found in self-published memoirs is Gisonni's remarkable candor about her own emotional torment."

It is likely that the book's excellent design features help it get noticed. Hers is one of a number of print-on-demand titles being published these days with a trade-quality look and feel. Previously ignored or snubbed by industry pundits, the merits of POD are starting to get traditional publishers to take notice, according to Gisonni.

"Print-on-demand has swiftly become part of the new publishing paradigm. The cost per book for traditional printing causes a problem for books that don't fly off the shelves -- and most don't. POD provides many benefits, especially if they're not in that very small percentage chosen by the publishing 'powers that be'. But just as with self-publishing, the author needs to create the demand for his or her book and name. Authors are starting to recognize the need to market their books and themselves as 'brands' regardless of how they get published."

Of course it helps to have some experience and skill in areas like graphics and web design when undertaking such a project. "I actually did the cover for Vita's Will on my own working with a graphic artist," says Gisonni. "Since I had magazine publishing experience, I knew exactly what I wanted so I didn't use iUniverse's services for that. Also, having been in the high tech market and having overseen many site designs, I was involved in putting my site together with a Web company."

Besides her lists of Real Life Lessons, the website has many helpful areas to help those coping with tragedies of their own. There's a place for visitors to write about "an experience or event that changed your life and taught you a real life lesson?" Also listed are the charitable foundations she supports with proceeds from her books, along with contact information for these and other helpful resources. She also includes all of her press material on the site.

Gisonni is planning to create more informational projects in the areas of books, articles and film to support her Real Life Lessons mantra: "Live, Learn, Inspire." She is also President of the San Francisco Chapter of the Women's National Book Association and volunteers her time to organizations that teach teen girls business and life skills.

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For more information or to contact Gisonni, visit the Real Life Lessons website. Shambhala Publications of Boston has long been recognized as a publisher of compassion and known for producing books that nurture people and our planet. One of their upcoming titles for Spring 2002 is Sacred Passage by Margaret Coberly, a book that offers practical teachings on death and dying from the Buddhist tradition and presents them in clear, non-technical language.

The author is a registered emergency room nurse and certified nurse educator who draws on the teachings of Tibetan Buddhism and on her thirty years of personal experience in emergency rooms and in hospice settings to offer practical advice on the emotional and spiritual dimensions of caring for the dying. She lays out a detailed roadmap of the dying process that describes the sequence of physical, psychological, and spiritual changes that occur as we die. Coberly also presents the "death meditation," a contemplative exercise for developing a new relationship to death-and life.

Working as an inner city E.R. nurse, Margaret Coberly came into contact with death on a daily basis. However, it wasn't until her own brother was diagnosed with terminal cancer that she realized she understood very little about the emotional and spiritual aspects of caring for the terminally ill. To fill this gap she turned to the unique wisdom on death and dying found in Tibetan Buddhism, and offers sound, practical advice on meeting the essential needs of the dying.

In the West, death is viewed as a tragic and horrible event. Coberly shows us how this view generates fear and denial, which harm the dying by adding unnecessary loneliness, confusion, and anguish to the dying process. Tibetan Buddhism focuses on the nature of death and how to face it with honesty, openness, and courage. In this view, death is not a failure, but a natural part of life that, if properly understood and appreciated, can offer the dying and their loved ones an opportunity to gain valuable insight and wisdom.

Coberly argues that the Tibetan Buddhist outlook can be a useful antidote to the culture of fear and denial that surrounds death in the West and can help caregivers become more fully present, fearless, honest, and compassionate. In her search for effective ways to interact with the dying, she discovered the many wise and practical instructions that permeate the Tibetan Buddhist literature on death and dying. In this book she offers the essential Tibetan teachings on dying using clear, non-technical language for a non-Buddhist audience. She illustrates the teachings with many engaging stories from her career in nursing. The book also includes a lengthy, annotated list of recommended readings for added guidance and inspiration.

Topics include:
* What to expect during the dying process
* How the terminally ill can experience emotional and spiritual healing even when they can't be cured
* Why Western medicine's relentless focus on curing disease has led to inadequate care for the dying
* How our fear and denial of death harm the dying
* Techniques to help caregivers promote a peaceful environment for the dying and their loved ones
* How to meet the changing physical and emotional needs of the dying
* Helpful advice on what to say and how to behave around the terminally ill

An excerpt:
"It is imperative that all of us-professional and lay people alike-begin to dismantle the conspiracy of silence that has enshrouded death for so long, and work to transform our fear and denial into knowledge and acceptance."