Inspiration is a fickle mistress. I love it when she flirts with me, but it happens so seldom that I almost don’t recognize her when she pays me one of her infrequent visits.
She visited me on New Year’s Day.
Let me set the scene.
Ever since my mother suffered a stroke on December 29, 2003 — the day after my 41st birthday — I have constantly written and rewritten a memoir of our family’s experiences dealing with her illness, recovery, and death. I have produced several drafts and shopped them around to publishers. One or two presses expressed mild interest, but they ultimately declined to publish the manuscript.
It’s tough to sell a memoir unless your last name is Kardashian, you were once married to Tom Cruise, you hacked off your arm to survive while trapped in the Utah desert, or Jerry Sandusky expressed a little-too-much-interest in you.
Since I could offer no such salacious anecdotes, I simply could not find a publisher interested in the memoir. What a shame, I thought. I have many things to say to families caring for, and coping with, sick or elderly relatives.
My Original Concept
The original manuscript, which I call Dreaming Out Loud because it was a favorite expression of my post-stroke mother, focused on our family’s experiences, but the story was not all heartache and sorrow, nor did it spout out the usual clichés about the nobility of suffering. Our family had its share of humorous misadventures. The manuscript covered the day-to-day aspects of living with an ailing parent such as picking a nursing home, finding physical and speech therapists, and arranging hospice care but it was first and foremost a story about an average family’s trials and tribulations.
As my family strove to care for my mother, I searched for books that described the challenges of living with a severely debilitated person. I found many self-help books as well as websites hawking medical products and techniques for coping with stress, but I wanted something more, something different. I wanted well-written, thoughtful, reflective literature. I wanted to read about the frustrations felt by caregivers and the mistakes family members made. Did anyone else feel the things I felt?
Throughout the long ordeal, I desperately wanted to be the good son and selflessly care for my mother. She had raised me as a single parent on very little money. Now, in her declining years, I wanted to repay the favor. And yet — and yet. I was no saint. I resented changing her diapers, struggling to pay her bills, taking time off from work to shepherd her around to doctor’s appointments, devoting hours to her speech and physical therapy regimens, and worrying about finding competent caregivers to help her in my absence. All the TV movies-of-the-week told me that I should become a regular Florence Nightingale, but I was nothing of the sort. My friends and family marveled at the “wonderful son” I had become, but I knew differently. I began to see myself as the world’s biggest hypocritical fraud even as I sought to rise to the challenge. I was trapped between shouldering the responsibility of caring for my mother and resenting the intrusion into my life. I felt the loneliness and isolation of being stuck in the middle.
Some family members walk away from a disabled person in his or her hour of need. They harbor no desire to suffer under a suffocating shroud of goodness and humanity. A family member can unabashedly act as a shit and offer no apologies. At the other end of the spectrum, some family members live for crises; they are natural caregivers who revel in their central familial role. They roll up their sleeves and cheerfully handle all manner of unpleasant tasks without complaint, saving whatever bitterness and anger they feel for some quiet place explored only in the dark of night.
But not me — I could not walk away, nor could I put on my happy face and get with the program.
Where were the books for people like me — people who were human, all-too-human? Surely I was not the only person who grimaced even as I did my duty. Surely I was not alone in making colossal mistakes and beating myself up about them later. Surely I was not the only person who realized after his burden had been lifted — in my case, with the death of my mother — that he had risen to the occasion after all. I came to see that the good son may not be perfect, but he can feel proud that he performed his duty even if the experience was not all roses and sunshine.
The books I found on caring for stroke patients and elderly parents were either sentimental tales filled with Pollyanna-type characters or self-help manuals overflowing with practical advice. A typical work was Stronger After Stroke: Your Roadmap to Recovery by Peter G. Levine (Demos Health, 2008). The book contains chapters such as “Five Tests You Should Do,” “Stimulate Your Stride,” and “Shoulder Care 101.” Don’t get me wrong — such books are useful. I can envision including a bibliography of helpful books and websites in my book.
Again, I was looking for something different — a book that spoke to me about my interior life. I could find plenty of motivational books filled with suggested exercises and inspirational words of wisdom. I wanted a more “human” book populated by characters that were not always inspiring or righteous.
When I did not find such a book, I decided to write my own.
In penning the tale, I deliberately did not write a self-help guide. I am neither qualified nor predisposed to pontificate on “Twelve Steps for Coping with a Stroke Patient.” Readers searching for a tale of redemption and Christian love — illness as an ennobling process that draws families closer together or reinforces religious values — would have to continue the search. If solace could be found in the original book, it was in appreciating the commonality of the human condition. The memoir was my personal story. While I suspect that the tale contained a measure of universality, especially for families struggling to care for the disabled, I was disinclined to spew out homilies about how love or God conquers all.
If the book offered any advice to the bereaved it was simple: Shit happens, so deal with it the best way you can. If medicine offers a cure, take it. If you need a support group, find one. If religion serves a purpose, get down on your knees. Whatever gets you through the night is all right.
Because the book was not a self-help guide, it was obvious that many of the actions I described were far from ideal. I realized that my mother was suffering a stroke much later than I should have, and I spent far too much time transporting her to the hospital. In retrospect, I see that many decisions I made in the heat of the moment would have been improved had I been more thoughtful and deliberative. I also demonstrated a curious passivity that rendered me all but immobile in many situations. I don’t say these things to be too harsh on myself; rather, I don’t want to mislead anyone into thinking that the activities recounted in the book were a model of behavior. The advice offered by the National Stroke Association — conveniently located on the World Wide Web at www.stroke.org — is contrary to almost everything I did during mom’s ordeal.
I have learned that experience can be divided into categories — what a person should have done, and what a person actually did.
In my opinion, the original version of Dreaming Out Loud filled a niche in the literature. The manuscript was unique in its storytelling approach, its humor, and its lack of pretense in explaining the challenges of coping with an aged, disabled family member. It also gave voice to the frustration that caregivers feel when faced with the daunting task of caring for a loved one.
Having said this, I recognize that a few previously published books inhabit the same corner of the marketplace. Three works immediately spring to mind. The closest competing book is Steven Boorstein’s Different Strokes: An Intimate Memoir for Stroke Survivors, Families, and Caregivers (Skyhorse Publishing, 2011). Boorstein describes his own stroke as well as the self-help steps he followed on the road to recovery. He also mentions the toll that a stroke takes on the patient’s family. His can-do attitude is encouraging, but a far cry from Dreaming Out Loud.
Jean-Dominique Bauby’s classic book The Diving Bell and the Butterfly (Vintage Books, 1998) is probably the most famous account of a patient’s efforts to live with the aftermath of a debilitating stroke. In this dramatic account, the author dictated the book by blinking his left eye to spell out words that were copied down and transcribed. The 2007 film version became one of the most successful independent films of recent years.
Jill Bolte Taylor’s bestselling memoir My Stroke of Insight: A Brain Scientist's Personal Journey (Viking Books, 2008) is another well-known account of a stroke patient’s recovery. Taylor, a thirty-seven-year-old Harvard-trained brain scientist, suffered a stroke in December 1996. She eventually recovered and wrote this thoughtful memoir about her experiences, which she also tied in with research on the brain. Dr. Taylor explains how the stroke made her a more empathetic physician as well as a more spiritual person.
Each of these books is an important contribution to the literature. The books are well-written, thoughtful, and accurate. Yet each work tells the story from the perspective of the stroke patient and each is designed to be uplifting, touting the miracles of love and life even when that life is diminished, to some extent.
Not everyone is impressed. For example, several customer reviews of My Stroke of Insight on Amazon.com object to the quasi-New Age mysticism. Here is one customer’s criticism of Dr. Taylor’s book: “And what is her stroke of insight? If you feel agitated, morose, angry, frustrated, or stressed-out, simply step to the right and become one with the universe. Simple.” The same critic later writes: “She then starts to write like a typical ‘New Age’ spiritual guru. She meditates (okay), prays (I'll tolerate it), praises her cells for defecating (ummm...what?), loves ‘vocal tuning with sounding bowls,’ and ‘also draws Angel Cards several times a day.’ Seriously. Angel Cards?”
I don’t want to make too much of customer reviews on Amazon.com. Such reviews must be taken with a grain of salt. Moreover, most customer reviews of My Stroke of Insight are positive endorsements. Nonetheless, the above-referenced reviewer’s opinion, which is echoed by a few other people, is that a book on recovering from a tragic illness can quickly turn into a cliché — the sort of “The-sun-will-come-out-tomorrow” and “Love-lift-us-up-where-we-belong” tales that Hollywood loves but which make for mawkish literature.
Dreaming Out Loud, as originally conceived and written, was different than the books cited above because it voiced the anger and frustration of friends and family members as they struggled with day-to-day decisions. No Angel Cards or New Age mysticism could be found. Yet Dreaming Out Loud was not a lugubrious trek through heartache and bitterness or a depressing tale of family dysfunction. Several chapters contained humorous anecdotes. From time to time, the text provided an uplifting message without collapsing into too many platitudes.
Although the book was designed to appeal to the friends and families of stroke patients, the audience would be anyone interested in caring for aging parents. Consider the data: Each year, about 700,000 American suffer strokes, and 560,000 survive. Most of the survivors and their families will need medical care and ancillary support services. Yet those numbers are small compared with other issues involving aging Americans. According to the website www.eldercarematters.com, approximately three million Americans were over the age of 85 in 1990. By 2011, the figure had doubled. By 2050, the United States will be home to about 19 million people older than 85, according to U.S. Census projections. Almost 78 million baby boomers will retire in the next two decades. Most of these aged citizens will face serious health issues as they grow older.
Here is another revealing factoid: More than 50 million Americans currently live in multigenerational homes. In many of those homes, middle-aged “children” are caring for elderly parents and/or supporting their own grown children. Family members make big financial sacrifices to help each other. Some of those caregivers, I hoped, would find the memoir comforting: “Oh, look, I’m not the only person who, in a fit of anger, yelled at my disabled mother. At least someone else went through this terrible episode as well.” My desire was to trigger “laughter through tears” (speaking of clichés) as readers recognized some of the same dysfunction and heartache found in their own families.
I thought it was a publishable manuscript, but publishers disagreed.
I reluctantly set it aside and worked on other projects.
My Epiphany: A New Concept
So what happened on January 1, 2013, to change my perspective on the manuscript?
It was the start of a New Year, and I had finished writing my book on American environmentalism. As I turned my attention to other matters, I took stock of my various projects — some already in the works, and some in the planning stages. As part of the process, I pondered how I could transform the memoir into a marketable commodity. I didn’t want to send the same manuscript to publishers for a new round of rejections. I needed to change my fundamental approach. Insanity is doing the same thing repeatedly and expecting a different result.
I wanted a fresh, sane marketing strategy.
Damn, I thought. I can sell diverse books on Civil War prisons, ethics, southern history, and terrorism. Why can’t I sell this memoir? If it were a history of American medicine, I bet I could sell that.
And then it hit me — a bolt from the blue. Bam! Eureka!
What if I reworked the concept to cover both my family’s experiences and historical information on the development of American medicine? Perhaps I could sell that book. If I can sell a wide variety of historical books, a history coupled with tidbits of a memoir also could be marketable.
The more I thought about it, the more plausible the new concept seemed.
I would open the book with my realization that my mother was suffering a stroke. I then would describe how I rushed her to the emergency room. In the next chapter, I would explain how emergency medicine developed. It would be a summary of the available literature, such as Henry Guly’s A History of Accident and Emergency Medicine (Palgrave MacMillan, 2005).
In another chapter, I would discuss mom’s experiences with rehabilitation in a nursing home. The chapter immediately following that first-hand account would discuss the history of nursing homes and rehabilitation medicine. A book such as Richard Verville’s War, Politics, and Philanthropy: The History of Rehabilitation Medicine (The University Press of America, 2009) would be an invaluable resource.
In yet another chapter, I could discuss the challenges of bringing mom home to live with her family even though the stroke left her partially disabled. The chapter following our experiences would rely on a source such as Karen Buhler-Wilkerson’s No Place Like Home: A History of Nursing and Home Care in the United States (The Johns Hopkins University Press, 2001) to place home health care into historical context.
When we learned that mom would die owing to lung cancer, we entered her into hospice care. I could discuss our experiences in one chapter. In a subsequent chapter, I could summarize the development of the hospice concept. Emily K. Abel’s new book The Inevitable Hour: A History of Caring for Dying Patients in America (The Johns Hopkins University Press, 2013) would be useful source material.
In short, the book ought to do what I do best: It ought to synthesize a large body of historical material and illustrate it with personal experiences. In following this approach, I could use the commingled chapters of the memoir and the history of American medicine to demonstrate the particularity as well as the universality of the health-care experience in the twenty-first century United States.
Eureka! I think I am onto something here. I still must rework my book proposal, but the idea strikes me as inspired.
Thank you, Inspiration. You are a fickle lady, an all-too-absent mistress, but no less lovely owing to your elusiveness.