ABSTRACT

This research question dwells in my life: "How can we understand the life of illness?" The question emerged in childhood, when my oldest brother, Eddie, and my baby sister, Grace, died of kidney failure and related causes. When I was ten years old, my mother told me I had kidney failure too. During my teen years, my younger sisters, Joy and Crystal, and I were frequently in hospital as the disease progressed. Crystal died when I was in high school. The following year, 1969, my older brother Arthur experienced the sudden collapse of his kidneys with Hong Kong flu and began dialysis on the artificial kidney machine. Joy and I began dialysis two years later. Our years on dialysis together ended when Joy and Arthur died in 1983. My father died from a heart attack in 1979. Yet the meaning of their lives is not primarily that they died but how they lived. How ought we to live? Though this research is completed, the question is new each morning.

The technology of medical care is part of the research question too. Medical technology sustains my life. But technology itself has no life - no soul that suffers pain and abounds in hope. And so technology is mute about the pain it requires of us, the hope it inspires in us, the life it gives us. The silence of technology becomes a question within us: "What is life that technology is not sufficient for life?" This question turns us to what is beyond us, to God, the search for what is good in the re-search of daily life.

How could I research the life of illness in a way that would help understand how one ought to live? Gadamer writes that understanding is always application, a form of action. Therefore, I searched the actions of those who live in illness and with illness to let show their understanding. The method for my research was hermeneutic phenomenology, the action of reflective reading, interviewing, and writing. Excerpts from literary texts were engaged in hermeneutic reflection with a medical doctor, a nurse, a chaplain, and a family member. In this way, the life of illness was researched through the community of illness.

In all these actions, I could not theorize myself out of the pain and the hope, the life of illness. I stand in illness in my research before God, one of the world in pain and hope. I want

to live in understanding. I want to learn how one ought to live through illness, even through the grief of pain. The method of finding the themes of pain and hope is reflection: thinking from the heart of mute experience to come to the heart of the written word. Literary texts show the silence of illness through the voice of the individual, reverberating with the heart of one's experience, shared by all. Still the words of the shared understanding - themes, are not easily articulated. Whereas the literary author lets the themes rest in the writing of story and fiction, the researcher searches for the words of the themes as they are shown through description and dialogue in the literary text, in interviewing, and in the research writing. Explanation would stop the question, "How ought we to live?" but themes reveal possibilities for living in this question until the themes themselves become open to deeper understanding.

The deepest understanding that this research has yielded is a quiet saying, the theme:

"The good of understanding is action, is love (care)." In illness, there is no life in us other than the love of God for us. There is no life for us other than the love of family, friends, and community; and our love for them. Some live to love the multitude, like Mother Teresa. But love is experienced in the individual. So I could not suggest appropriate action for different Situations of illness: the good of understanding, the action of love-God's love, is you.

Table of Contents

Chapter

I. WHAT IS AT STAKE IN THE RESEARCH QUESTION9 1

Critical Context of the Question 1

Personal Context of the Question 2

Linguistic Context of the Question 3

Purposeful Context of the Question 5

Notes 6

II. THE QUESTION OF UNDERSTANDING 8

How Can We Understand9 8

Hermeneutical Phenomenology 9

Expressing Our Response to Illness 10

Experience as Dialogue 12

Notes 14

III. THE GOOD OF UNDERSTANDING 16

How Can We Dialogue With Illness 16

Parsons' Theorizing: Professional Health Care 17

Critiques of Parsons' Theory 18

Two Revolutionary Experiments 20

Where Does "Theorizing in Order to Produce a Collective" Lead9 21

Heidegger's Theorizing: The Homecoming Journey 22

Notes 24

IV. THE HOW OF UNDERSTANDING 26

Wonder at What Is: The Essence of Truth 26

Speech in the Light of Logos: The Work of Art 27

Being- Towards - Death Researches Life: Kierkegaard's Question and Method 30

Notes . 37

V. IVAN ILYITCH: ONE AGAINST THE OTHER SEARCHES FOR THE OTHER 40

First Reflection: On The Death ofI~an Ilyitch 40

Encounter With Death 40

Against Death 41

Against Deception 41

The Struggle for Truth 42

The Doctor Gives Hope 43

Against God 43

Listening to the Voice of Silence 44

Against Self and Family 45

The Minister Gives Hope 46

From Hope to Hopelessness 46

The Miracle of Forgiveness 47

Set Free 48

The Meaning of the Last Moment 48

Second Reflection: On Themes of Letting Go of the Things 49

Caius to Ivan 49

Moments to Memories 49

Invalid to In-valid (L. in-"not"; validus-"strong") 50

Dis -ease to Disease 50

-~Pain to Despair 51

Help to Hope 51

The Needy Master 51

Hope is a Promise of Help 51

Judgment to Mercy 52

All Moments to the Last Moment 52

Notes 53

VI. PAULINE ERICKSON: ONE WITH THE OTHER 55

First Reflection: On Pauline's Diary 55

Self-pity 55

Pain 56

Blessings 57

Changing 57

Giving 58

Transcending Captivity 58

Hope 59

Hope for Tomorrow 60

Peace 60

Hope for Today .61

Second Reflection: On Themes of the Struggle to be Born Into a Life of

Illness 62

Self- pity is Honorable as a Step Away From Self- pity 62

The Pain of Illness 63

The Pain of Illness is Loss 63

We Find Refuge in Blessings 64

Day 65

To Live is to Give 65

The Body, After All, is not the Source or the Limit of Our Being 66

Hope is Stronger than Death 66

Hope is the Acceptance of Blessings not yet Received 66

Hope is the Longing for Healing

Hope is the Acceptance of What We Cannot Understand 68

We Bear the Grief of Death as Hope 68

Life Gives Us Peace 68

Notes 69

VII. DOCTOR RIEUX: ONE FOR THE OTHER 71

First Reflection: On The Plague 71

The Fact of the Doctor's Diagnosis 71

The Doctor Finds Solace 72

The Meanings of Being a Doctor 73

To Have a Heart for Healing and No Cure 74

Life and the Doctor of Death 75

The Doctor Fights for Life 76

The Doctor Questions All Values 77

Second Reflection: On Themes of the Heart of Pity 77

Science does not Pity 77

Science because of Pity 78

The Heart of Pity is '4a Sympathy Full of Regret" for "All the Pain" 79

The Heart of Pity is the Manner of Care 79

The Heart of Pity is the Mortal Helping the Mortal 80

The Heart of Pity is Resurrected by Death 81

Notes 81

VIII. FLORENCE NIGHTINGALE: ONE BYTHE OTHER 84

First Reflection: On Notes on Nursing 84

What Nursing Does 84

Seeing Illness 85

Light at Night 86

The Presence of Care 87

Second Reflection: On Themes of To Be There a Nurse 89

To Be There a Nurse is to Ease the Dis -ease of Illness 89

To Be There a Nurse is to Remember that the Ill Person Feels Far

From Home 89

To Be There a Nurse is to See Pain in the Light of Hope 90

Notes 91

IX. LORD TENN~ON: ONE WITHOUT THE OTHER 92

Reflections: On "In Memoriam," Themes of the Journey Through Grief 92

To Speak About Grief 92

Dark House 93

The Paradox of Calm 94

Sharing a Life 95

Life Stops (The First Christmas After) 96

"Be Near Me" 97

Learning to Trust 98

To be Silent About Grief 99

Life Goes On (The Second Christmas After) 100

Eulogy 100

SongofHope 101

Notes 102

X. THE GATHERING 104

Student of a Research Question 104

Researching Phenomenological Texts 104

Yields of the Literary Texts 105

Yields of the Writing 106

The Homecoming 110

Notes 110

BIBLIOGRAPHY 111

© Max van Manen, 2002
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