Reflections by Alice Carlton
This memoir tells the heart-wrenching story of a marriage brought through dark days over a decade from 1984 to 1996 due to the husband’s illness with Lewy Body Dementia. What an awful disease. It took him, an Anglican priest, in and out of lucidity with unpredictable fluctuations. It is often confused with Parkinson’s with its movement slowness, stiffness and tremor, and also with Alzheimer’s with its visual hallucinations, delusions, and progressive mental confusion.
The coming of this disease and its impact also raised in author Rebecca de Saintonge all sorts of spiritual questions. Her faith had been a conventional Christian one, relying on the assurance of atonement from original sin with God as all-powerful, all-knowing, all-loving. She watched her husband (referred to as Jack in her book) suffer and could not make sense of it, despite his grace in his suffering.
Her struggle is vividly described.
“So now, my love, I know the worst. Your brain is shrinking inside your skull. You are going to disintegrate very slowly, mind and body. You will know what’s happening to you. You will see your shit on the floor, on your feet, but you won’t know how it got there. You will see me distraught and distorted and know that you have made me so, and not know how to stop it, or how to help. You will feel our loving in rags and your God absent and I will hold you to my breast and cradle the shell of your skull, for you will have gone, my lover, my dear one. But not quite.”
Jack was the love of her life. He had brought her into his joie de vivre when her life had been shattered by an abusive first marriage, undertaken to escape the obligation to take care of her difficult mother. They had six glorious, adventurous years. They moved to Zimbabwe in 1982 where he worked as pastor of an Anglican congregation and she wrote and helped organize programs for women in the community. They were true intimate partners.
Then the shadow of Lewy Body Dementia fell across their bright joy through Jack’s increasing anxiety and moments of confusion. At the urging of her brother, a doctor, they returned home to England.
As Jack’s illness was finally diagnosed and his functioning deteriorated, the effects shocked her out of her conventional beliefs. How can the Loving God she worshiped allow such suffering? “Damn you, God,” she cursed. What agony to have the man she knew and loved come and go as his disease progressed. In a moment of despair, she once asked Jack why he should suffer so much. “He looks at me with such gentleness and says, Why should I not?’” At times she wanted to run away, to die herself, yet she could not leave his care to others.
Then, near the end of her rope, she met a man (she calls him Nick) with a different but similarly dire family life: he had an adult autistic son who was severely impaired and a wife he no longer felt connected to except as a co-parent. He inserted himself into her life and became a lifeline for her. She resisted his attention at first. Finally, the desert she inhabited required her to drink a bit from the cup he offered. When her husband went to visit his adult children occasionally, she got a much-needed break with brief interludes of pleasure and companionship. Enough to keep her from hitting bottom, but nothing that vanquished her love for Jack. It brings to mind the old saying: Some people come into our lives for a reason, for a season, or for a lifetime. Nick came for a reason and for a season.
In the end, she got some help for Jack, first at home and later in the facility he was moved to. And finally, in September 1996, he died.
Saintonge then entered another void: what would fill her life now? How could she make sense of it all? What did she even believe anymore? It was another kind of dark night of the soul.
“I sat in silence and confusion year after year, the loss of spiritual understanding feeling even more painful than the loss of Jack. In the end I came to see that, once again, God had to come to me, to find me and teach me not to believe what anyone else believed, but to take me into a space that I could find authentic.”
She read Richard Rohr’s Things Hidden and embraced the idea of original blessing. She read Marcus Borg who described the incarnation of Jesus as revealing, not the dichotomy, but the oneness of the finite and the infinite. “We can become more fully human by connecting with that of the divine within us,” she writes. “That made perfect sense to me.”
I resonated with her search. I left my Presbyterian upbringing and wandered a while until I found my spiritual home among the Quakers. As for theology, other than God is Love, I cannot make much of the concept of God. I agree when she says “we cannot name the unnameable.” The Spirit, the Infinite, God, whatever name we use, seems to me too vast for our small minds to even begin to comprehend.
Six months after Jack died, she and Nick parted. Three years later, her mother died but not before they reconciled. “From being always rather spiky and manipulative, she mellowed and became truly tender, Saintonge writes gratefully. “For the first time, I think, since I was a child, I could love her as a mother, without reservation. It was the most healing experience.” Saintonge went on to get a Ph.D. and to fill her house with books. She doesn’t say so in the book, but in later interviews she makes it clear she also found a religious home among the Quakers.
As she writes at the end: “I do not know what I mean by ‘God.’ I dislike the word because it is hung with connotations I think unhelpful, even harmful, but I live in a growing trust that we are, as Jung would say, related to something infinite. More than that, I believe this relationship can be intimate. I turn towards a moment of light, and it vanishes. But if I don’t move, don’t try, if I just rest in complete internal silence, then I think sometimes, for the smallest moment, I sense the beloved stranger moving towards me.”
So do I.
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*One Yellow Door: A Memoir of Love and Loss, Faith and Infidelity,
by Rebecca de Saintonge. Darton Longman And Todd Ltd., 192 pages.