The last day of the month, the last discussion of this month’s moving book. In finishing up “The Light Within”, we witness a scene unique in our readings thus far. By virtue of the book’s dual-author structure, we are present during the last passage of the cancer. In a recent post, Advance Directives vs Death Panels, I talked about good deaths and bad deaths I have witnessed. Deb’s death, as described in the book, is about as good as it gets.
We have talked about being able to see the development of the friendship of these extraordinary women. We have also seen the growth of the physician from an uncertain resident to a grounded healer. And, of course, we observe how Deb, acting from her special background as a professor of religion, struggles with the transitions from well-person, to survivor, to relapse, to a second cancer, and finally to inevitability of approaching death. But we have also witnessed the transformation of the patient’s daughter, Abby, from a troubled angry teenager to a creative and independent young woman. This is remarkable in that her childhood was in part defined by her mother’s battle with a deadly cancer. In The Interview chapter, Abby interviews her mother for a class on the sociology of death. This gives her permission to stand back from her role as daughter and to look more objectively at the process her mother is enduring. As she says :this does not mean that Deb is comfortable with dying; rather she vacillates between several different coping strategies to maintain emotional control in her day-to-day life.”
As we move into the chapter The Great Unknown, we can sense the greater weight of this story as the disease progresses in spite of all medical intervention. In their continuing examination of the the concept of spirituality, they proclaim that “spirituality is about relationships in the face of life-threatening illness…. Spirituality is also about doing everything we can for our fellow human beings, even as we recognize that there are things we cannot change.” But Deb later says that her wish is to die alone. She would prefer that Giles, Abby and Adam not be at her side, seeing her weak, emaciated and pitiful. I wonder if this sounded selfish to any of our readers? ( we later see that this dying alone was not to be the case). Deb’s attitude seems to widen as she suffering intensifies. “Death is something to be feared, but it is also a source of comfort, rest, and release.” Indeed the second primary diagnosis of myelodysplastic syndrome seems to crush all hope.
But it is after that diagnosis that Deb changes her tack and begins to readjust her goals and desires. She rectifies with the probability that she will not be present at Abby’s graduation, Adam’s wedding, and the birth of Lois’ baby. Her attention is more focused on others. This is why she still applies lickstick and wears earrings. “I think it’s the least I can do. You’re the ones who have to look at me.” She also engages in that familiar behavior of giving away her things.
I am reminded of why we, as healthcare professionals, have to learn to maintain some level of emotional defense. Though Dr. Lois has gained much from allowing her frindship with this patient to deepen, the dying process becomes increasingly emotional and painful for her. I like the phrase “the darkness of being a patient”. It is a concept that we all can relate to, the business of not being fully in control of our feelings and the inevitable temptation of surrendering, at least temporarily, to “absolute despair.”
The last chapter was beautifully revelatory. Final exchanges between Deb and Abby. “As a result of such transparent honesty and intimacy, we all slept better that night, knowing that love can sometimes bring peace to even the most anguished hearts.” Almost disturbing this peace was the embarrassing (for me) decision by the hospice nurse to do some unnecessary and uncalled for evangelizing on Deb’s deathbed. This is not to condemn the nurse’s sincere and deep religious convictions. But to attempt to foist them onto a dying person is outside the bounds of professionalism.
This chapter, The Distinguished Thing, holds lessons for all of us survivors, an example to how to face death courageously and honestly. Lois’ last letter to Deb underscores the message from Sherwood Anderson, cited here previously but worth repeating. “Death ends a life but not a relationship, which continues on, seeking its own resolution.” Lois envisions that her relationship with Deb will indeed continue on, manifested in her continuing relationship with Abby and in her Deb stories to her own daughter.
Deb’s husband’s Afterword is an eloquent tribute to her life and suffering. “After all, this is a story about wresting new life from mortal instruments. But new life, as most cancer patients and their caregivers know, is not to be confused with physical health; it is rather to be identified with the courage to extract wisdom from the hardest things….Deborah was…a teacher who possessed the gifts to turn all living into a form of learning, all learning into a kind of art enhanced, wherever possible, with style, humor, wit, beauty, and courage.”
September Selection: Time on Fire: My Comedy of Terrors by Evan Handler
Reading Assignment: Chapters 1, 2 and 3, approx 73 pages
Discussion Questions: (I will post questions here in a couple of hours)