Abstract
Background and Contribution to the Literature
In September 2014, my colleague and friend, Dr. Deborah L. Phelps (Debbie), e-mailed a draft of a memoir she had intended to write for a while. It was a monograph about the devastating loss of her husband, Frank Schertler. Debbie’s friends encouraged her to write the piece for herself. However, as a medical sociologist, Debbie envisioned a broader purpose and sought to publish the memoir for those who would face the ordeals of providing end-of-life care and patient advocacy for loved ones. Particularly important to her were the chapters in Part II, “Medical Interventions,” to serve as the “core to empower other caregivers.”
Debbie’s memoir, published as Frank’s Arms, triumphs as a significant contribution to the literature in sociology and sociological practice, and a worthy complement to textbooks in the subfields of medical sociology; disability and society; the sociology of emotions; aging and the life course; death, dying, and bereavement; and grief work. Debbie’s sociological perspective generously seasons her memoir, which is divided into four parts: “Background,” “Medical Interventions,” “Widowhood,” and “Reflections.” Noteworthy are Debbie’s “Lessons and Reflections,” which punctuate the chapters in Part II. Her insights draw on critical sociological theories, themes, concepts, principles, and practices that are included in a glossary at the end of the book.
The Psychopomp’s Journey: Parts I and II
In Frank’s Arms, Debbie serves as our psychopomp, instructively guiding us on a soulful journey of enlightenment and transforming us into knowledgeable and effective end-of-life caregivers and patient advocates. She illustrates this in her descent into the netherworld of the U.S. health care system, and deciphering her interactions with the medical professionals who inhabit it. All of this is to better manage Frank’s care, which she keeps as part of an intimate exchange of promises, in a chapter titled, “My Deal with Frank” (Phelps 2015:79–83). (You will need to read the memoir to find out what Frank promised Debbie in return, and how he fulfilled it.)
The journey begins with the unexpected onset of Frank’s debilitating disease, scleroderma, in 1998, which was misdiagnosed as Lupus, as it often mimics other autoimmune disorders. It assaulted an otherwise robust and energetic man, and trained engineer, at the age of 45, until his death at 52. “Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases” (Scleroderma Foundation 2017). Its causes are unknown, it and involves the overproduction of collagen. Lodish et al. (2016) note that collagen is “the major insoluble fibrous protein in the extracellular matrix and in connective tissue.” Systemic scleroderma, the type that afflicted Frank, is particularly virulent, as it attacks the internal systems of the body. Currently, there is no cure.
Debbie’s account of Frank’s insidious disease over the next seven years details several surgeries and the unflattering hardening of the dermis or skin, conveying the shocking realities of its invasiveness and toll on others. In a chapter titled, “Death’s Dress Rehearsal” (Phelps 2015:61–63), family and caregivers meet at Frank’s bedside to extend final sentiments and prepare for his approved termination. Despite the medical consensus, Frank rebounds, regroups his will to live, and survives the trial, only to succumb two weeks later to congestive heart disease and organ failure. Along the way, we learn that Frank harbored a healthy skepticism of Western medicine, and distrust of physicians and medical caregivers, stemming from early traumas and complications from uniformed surgeries, including a surprise tonsillectomy. Despite these inauspicious beginnings, Frank proved an inspiration to his caregivers and everyone who loved him. His indomitable spirit and determination to conquer his illness, no matter the obstacles, were infectious.
Frank’s Afterlife and Debbie’s Transformation: Parts III and IV
Debbie’s journey continues in what is best described as Frank’s “afterlife.” She honors Frank’s requests to permit an autopsy to allow medical practitioners to better understand scleroderma—which is rare in the general population, especially among men—and plan his funeral. More problematic is Debbie’s mastery of widowhood, a matter she suppresses for three years by focusing exclusively on her duties as a department chair, and practitioner in human services and applied sociology. A little help from family, therapeutic support from a professional colleague, and her faith help her forge a redefinition of “self” and “identity”—but not as a widow, who looks backward on “loss and sadness,” but as a “single person,” who looks forward toward “abundance” (Phelps 2015:103).
Debbie’s reflections are practical. They prepare us for disappointing diagnoses, prognoses, side-effects, and outcomes; effective patient care and advocacy; probate; and the realities of living on one income. However, it is a spiritual reflection that resonates. Debbie ruminates that Frank endures as a palpable living and loving soul, which she can sense and feel. She enigmatically writes, “Awareness is the first step to understanding and acceptance.” What a powerful and reassuring sentiment!
Ancient Wisdom, Modern Metaphors, and Final Thoughts
Debbie’s journey in Frank’s Arms may very well be a contemporary account of the mythological “Hero’s Journey.” Writing in The Hero with a Thousand Faces, the late Comparative Folklore Professor and Mythologist, Joseph Campbell ([1949] 2008) mused, A hero ventures forth from the world of common day into a region of supernatural wonder: fabulous forces are there encountered, and a decisive victory is won: the hero comes back from this mysterious adventure with the power to bestow boons on his fellow man (p. 23).
In Frank’s Arms, Dr. Deborah L. Phelps, academic and practicing sociologist, and Reiki therapist, journeys into the abyss of the health care netherworld, taps into the collective unconsciousness, and returns, bestowing a practical gift: a modern parable of effective end-of-life care and patient advocacy to guide us on our own personal ventures.
Sports enthusiasts will find Frank’s Arms strongly reminiscent of Eleanor Twitchell Gehrig’s loving monograph, My Luke and I (1977), coauthored with Joe Durso, and dedicated to her late husband, the legendary New York Yankee’s first baseman, Lou Gehrig. Although the latter lacks the sociological lens that Debbie offers in Frank’s Arms, both narratives succeed in starkly contrasting the accomplishments of humble men who were prematurely cut-off by incurable diseases. Lou’s life was claimed by amyotrophic lateral sclerosis, or ALS, commonly known as “Lou Gehrig’s Disease.” To be sure, the circumstances of Lou’s and Frank’s downfall, and Eleanor’s and Debbie’s resolve to work-around the prognoses, tug at the heartstrings, but it is the couples’ deep love, courage, and perseverance that raise spirits and resurrect hope in the end.