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The Life of Illness tells the story of one woman's courageous struggle with kidney failure, illness, and death. It is, however, a book about life, hope, faith, and the transformative power of caring for one another.
Carol Olson writes "from the heart of experience," having shared a life of illness with two brothers and three sisters, whom she now survives. Her own life has been precariously maintained by kidney dialysis for more than twenty years.
Inspired by the works of philosophers, literary authors, and poets, Olson turns to hermeneutical phenomenology to explore the meaning of the experience of illness. In response to the question, "How can we live with illness?" the author engages in reflective conversations. As patient, she dialogues with literary works of art dealing with illness, developing relationships between texts and others who experience illness from various points of view: the chaplain, the doctor, the nurse, and the parent. Olson makes us aware of the significance of others in their various caring relations with the person of illness. The clarity and deeply compelling nature of her writing makes this book accessible to all whose lives have been touched by these experiences.
The experience of illness and death we all face impels us to wonder with her about the nature of wholeness and health. Ultimately we ask: "What is life?"
"Olson's work is a lesson. It shows to health care professionals and others who are involved in lives of illness that a health care theology, although a hidden paradigm, is a reality. In the midst of a health care system that is primarily dedicated to economics, technology, politics, and industry, Olson gives voice to the hidden paradigm and reminds us that we need to recapture a synthesis between the health care culture and faith." — Qualitative Health Research
"This book has a power and beauty to it because the issues are living ones for the author. Through her eyes, the reader is brought in a profound way into the issues confronting a person with a debilitating illness. This book fundamentally poses a challenge to rethink the effects and consequences of technology and health care practice for human life." — Howard Eilberg-Schwartz, Stanford University
"The author's intimate involvement with technology while she is facing death allows her to capture the finitude of life in many insightful and provocative ways. It is in fact difficult to express the beauty and power contained in this book. The topic is important for those who are in any way involved with health care, nursing, and the healing experience." — Maggie Neal, University of Maryland at Baltimore, School of Nursing
Introductory Essay: Others
Acknowledgments
Introduction
Illness in My Family
Introducing My Work
Chapter 1. Epigraph for Joy
Joy's Diary
Chapter 2. Heartbeat Wrapped With Plastic
Past Lives
Machine Life
My Mother's Response to Illness
Darkness Threatens
Research Objects
Blood Tests
X-rays
Surgeries
Common Sense Research
Pure Water
To the Law Courts Building
Arthur and I Respond to Dialysis — 1975
Machine Progress
Blood
Blood Water
New Bone, New Life
Protection from Medicine
Patient Education for Individual Care
Informed Consent for Individual Care
Illness is Personal
Chapter 3. The Question of Technology
Children of Technology
Dialysis
The Meaning of Speaking and Listening
Chapter 4. The Question of Understanding
Can We Understand?
Hermeneutic Phenomenology
Expressing Our Response to Illness
Experience as Dialogue
Chapter 5. The Question of Theorizing
Theory Building
Theory Finding
Parsons' Theorizing: Professional Health Care
Critiques of Parsons' Theory
Two Revolutionary Experiments
Where Does "Theorizing in Order to Produce a Collective" Lead?
Heidegger's Theorizing: The Homecoming Journey
Chapter 6. A Pathway for Theorizing
Wonder at What Is: Language and Truthfulness
Speech in the Light of Logos: The Work of Art and Theorizing
Kierkegaard's Theorizing: The Freedom of Faith
Theorizing with Examples
Theorizing with Thematic Questions
Responding to Kierkegaard's Theorizing
Taking Up the Journey
Chapter 7. Ivan Ilyitch: One against the Other Searches for the Other
On The Death of Ivan Ilyitch : The Chaplain Speaks
Encounter with Death
Against Death
Against Deception
The Struggle for Truth
The Doctor Gives Hope
Against God
Listening to the Voice of Conscience
Against Self and Family
The Minister Gives Hope
From Hope to Hopelessness
The Miracle of Forgiveness
Set Free
The Meaning of the Last Moment
Letting Go of the Things
Caius to Ivan
Moments to Memories
Invalid to In-valid
Disease to Disease
Pain to Despair
Help to Hope
The needy master
Hope is a promise of help
Judgment to Mercy
All Moments to the Last Moment
Chapter 8. Pauline Erickson: One with the Other
On "Pauline's Diary": The Patient Speaks
Self-pity
Pain
Blessings
Changing
Giving
Transcending Captivity
Hope
Hope for Tomorrow
Peace
Hope for Today
The Struggle to be Born into a Life of Illness
Self-pity is Honorable as a Step Away from Self-pity
The Pain of Illness
The pain of illness is loss
The pain of illness is bearing the grief as hope
We Find Refuge in Blessings
Each of Our Days is an Invitation to Live as though it were our Dying Day
To Live is to Give
The Body, After All, is not the Source or the Limit of Our Being
Hope is Stronger than Death
Hope is the acceptance of blessings not yet received
Hope is the longing for healing
Hope is the acceptance of what we cannot understand
We bear the grief of death as hope
Life Gives Us Peace
Chapter 9. Doctor Rieux: One for the Other
On The Plague : The Doctor Speaks
The Fact of the Doctor's Diagnosis
The Doctor Finds Solace
The Meanings of Being a Doctor
To Have a Heart for Healing and No Cure
Life and the Doctor of Death
The Doctor Fights for Life
The Doctor Questions All Values
The Heart of Pity
Science does not Pity
Science because of Pity
The Heart of Pity is "A Sympathy Full of Regret" for "All the Pain"
The heart of pity is the manner of care
The heart of pity is the mortal helping the mortal
The heart of pity is renewed by death
Chapter 10. Florence Nightingale: One by the Other
On Florence Nightingale and Notes on Nursing: The Nurse Speaks
What Nursing Does
Seeing Illness
Light at Night
The Presence of Care
To Be There, a Nurse
To Be There, a Nurse, is to Ease the Dis-ease of Illness
To Be There, a Nurse, is to Remember that the Ill Person Feels Far From Home
To Be There, a Nurse, is to See Pain in the Light of Hope
Chapter 11. Lord Tennyson: One without the Other
On "In Memoriam,": The Mother Speaks
To Speak About Grief
Dark House
The Paradox of Calm
Sharing a Life
Life Stops (The First Christmas After)
"Be Near Me"
Learning to Trust
To be Silent About Grief
Life Goes On (The Second Christmas After)
Eulogy
Song of Hope
Chapter 12. The Homecoming
Children of God
Eddie's Homecoming
Chapter 13. Epilogue
Student of a Research Question
Researching Phenomenological Texts
Yields of the Literary Texts
Yields of the Writing
Friendship
Notes
Bibliography