“The Light Within” – final discussion

lightwithinThe 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 SelectionTime 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)

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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“The Light Within” – final discussion — 3 Comments

  1. I have just discovered your discussion about ‘The Light Within’.

    Not having read the book nor until now even known of it’s existence I found your discussion very evocative and deeply touching.

    Myself and two co-authors have just launched a book published by Allen & Unwin called ‘The Intimacy of Death & Dying – Simple Guidance to help you through.”
    If it is of interest you can read samples of the stories and/or buy the book through this link: http://www.amazions.com.au/death-and-dying.html

    It has 22 stories of people’s experiences of the death and dying of their loved ones and in between each story is guidance to support people facing this experience. The stories travel from old age to pre-birth and tell of deaths expected and unexpected. It covers many different experiences including cancer, drug overdose, suicide, death on the road, the gift of humour, workplace accident, death of a twin, and death from a sport activity.

    Reader Reviews say:
    “Death is a subject that both fascinates and repels us all. Headlines of death and destruction grab our attention, murder mysteries rivet us to our seats and watching real people deal with loss through tragedy on TV consumes us with empathy. But facing our own or our loved ones death is something we prefer not to think about. ‘The Intimacy of Death and Dying’ gently takes our hand and helps us open our eyes to what we do not want to see, that death comes to all of us, and that how we face our own end or that of our loved ones is just as vital to the celebration of life as welcoming a new baby into the world. ”

    – Carolyn Greene (The Book Warehouse)

    “… can only say every home needs this book — it is the bible of how to prepare for death and how to make sure you make the most of living.” – Barbara

    “This book is a major step in removing death from the taboo list and placing it on the table for open, caring and loving discussion.” – Alex

    “… Wow, this book is so beautifully written. I think I’ve cried every second chapter, but not in a depressing way, in an uplifting way.” – Natalie

    My reason for writing this book was a personal experience of supporting my sister-in-law Trish (her story is in the book) when she was diagnosed with inoperable cancer to make the last months of her life, special. And we supported her in organising her wedding 36 hours before she died! This was such a profound experience for me, as it obviously also was for all involved in Deb’s death, that I felt it important to share with others. I commend Deb’s daughter Abbey for the courage it would have taken to interview her Mum in order to share with other’s the importance of knowing more about death. I believe we really are honoured by those who share the intimacy of their death’s with us in order to make it easier for the rest of us to follow where we are all destined to go. Thank You

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