When Prayer Does Not Produce a Cure*
by Phyllis Roe
What happens when physical healing does not occur? This is a personal statement about the life and death of one person who lived with the reality of an incurable disease one who was not healed.
Rebecca Louise Roe died at the age of 26 on March 24, 1978. She had suffered for eight years from systemic lupus erythematosus, a chronic inflammatory disease of the connective tissue. The disease had damaged her kidneys and for six years her life was sustained by hemodialysis, the process of removing waste products and water from the blood by use of an artificial kidney machine. This meant that she spent three days each week hooked up through plastic tubing to the machine which kept her alive but which could not guarantee how long she might live.
There is no cure for lupus. There is only the hope of keeping it under control and even that hope is limited when the disease is severe. The disease can attach any organ of the body, including the heart, lungs, and circulatory system. The pain and fatigue one suffers from lupus can be intense and debilitating.
How does one live and find meaning when modern medicine, prayer and a strong faith do not produce a cure? I can only tell Rebecca's story and the transformation which took place in her life. In one concrete life perhaps we can all find clues to our own ways of living out our dying.
Rebecca learned of her disease when her kidneys failed just as she completed her first year of college. She had already suffered several years of crippling arthritic pains. The news that she would be dependent on a machine for the rest of her life, which doctors predicted would be one to three years, was devastating. All of the hopes she had for her life seemed dashed. Fear of death became the dominant force in her life. Her disbelief, anger, and bitterness were shared by all of us who were close to her. It was unfair and cruel. We all felt helpless, including the excellent staff at Mayo's Clinic where she had gone for treatment. Rebecca experienced the loss of friends who were frightened by what was happening to her and withdrew from her. One of her poems expresses her sorrow:
Loneliness wears on my soul
Like relentless drops of water.
My tears fall endlessly
As I cry out for mercy.
Dear God, will this piercing,
penetrating pain
Ever cease?
Rebecca shared with all of us the human situation of facing one's own death. Like all of us, she tried to deny the finality of what was happening and continued to hope for a cure, for a dramatic remission of the disease.
In the midst of all of this, Rebecca began to discover small ways of finding some meaning within the limitations imposed on her by the machine, a strict diet, and many hours of rest each day. She began to correspond with other lupus and kidney patients and soon established a network of friends across the United States. Artistically talented, she created beautiful macrame which she exhibited and sold at art shows. She continued to be active in the church, and sought a community of people to share life with her. Perhaps most importantly, she explored her faith and cried out, like to Psalmist, for God to be present with her in all that she was suffering.
The life she had begun to piece together was again shattered when the family found it necessary to move to a small Nebraska town. Rebecca had been dialyzing at home with my mother as her dialysis partner. She contemplated staying in Lincoln and living on her own, but with many setbacks she experienced physically the uncertainties of her disease she was afraid of what might happen.
Away from her friends, Rebecca felt her isolation keenly. At the same time she was reading The Denial of Death by Ernest Becker. This book stimulated reflection on her life and how she came to believe that in her fear of death she was not living as fully as possible in the time she did have, borrowed though it was. She felt that until she had experienced life on her own, had tested her own capacities for taking care of herself, she would not have made use of her fullest potential. Two options were open, and both carried with them the risk of a more imminent death: a kidney transplant, which, if successful, would free her from the dialysis machine but which was very risky for her, and moving into an apartment in Lincoln to try living independently.
Due to a number of complicating factors, a satisfactory kidney donor could not be found. Although deeply disappointed, Rebecca decided to give up the security of living at home and the relative comforts of home dialysis to live on her own. She secured an apartment and made arrangements dialyze at a hospital. Anyone who knows the severity of Nebraska winters can guess what it took to get up at 5:30 a.m. to drive herself through snow and ice to the hospital. And anyone who knows a parent's anxiety in watching over a sick child can understand what it cost my parents to let Rebecca go in order that she might live more fully.
The transformation which took place in Rebecca as she made these decisions was a radical one. Death ceased to have the power that ruled her life. Knowing the extra physical exertion it took to live on her own could cause a hastier death, she created new possibilities for growth and richness in life. She gained a new sense of confidence. She was a pleasure to be around because of the joy she found in relationships and in living. And her life reached out to touch others. The words a friend wrote after Rebecca's death say it well:
Wherever eyes see more clearly because they had an insightful instructor--Becky--who truly knew how to see; wherever ears hear sounds that were muffled to them before they know her; wherever touch is refined, there Becky is alive.
Wherever there are people who learned from her how to come to grips with pain, turn it inside out and grow from it, there Becky remains alive.
I don't mean that Rebecca was immune from self pity, anger, or even despair. Up until her death she struggled with discouragement and disappointment. She was as fallible as you and I. Her life was broken and incomplete in many ways. She simply lived out her dying as best she could.
What made the difference in her life was an underlying conviction that "nothing in all creation... can separate us from the love of God in Christ Jesus our Lord." It was a conviction that she expressed in the way that she expressed in the way she lived her life. She could have retreated from life with others. She often visited people who had just discovered that they had to be on a kidney machine and offered them her understanding and encouragement. She used her artistic abilities to create banners which enhanced the worship experience of the church. The last banner she made was an Easter banner splattered with colorful butterflies and the words "You can fly, but that cocoon has to go!" It was appropriate that this banner should hang at her funeral service.
Rebecca's life was a witness to the Christian understanding that life is not a possession to be tightly grasped, but a gift to be lived in gratitude and faithfulness. Death, pain sickness can be "turned inside out" by the power given us through Christ's death and resurrection and the meaning and richness of life discovered. A year before she died Rebecca wrote:
God's love
Stands like a rock
That will never crumble.
Even in my darkest despair
It's there.
Phyllis Roe was Director of Candler's Supervised Ministry program when this article was written. This article first appeared in Candler's Ministry & Mission in 1978 or 79. Phyllis died in 2001.
*[Note: The title was supplied by the periodical; Phyllis said it was not her original title.]