Illness won love and lost love—then taught me how to live.
The tapping on the wood door was enormous in the silence. Shocked out of my solitude, I pushed myself up from the couch and heaved open the door. Silhouetted against the light was a dark-haired woman with a girl clinging to her skirt. I knew who she was. My landlady had told me about the woman I had seen picking up mail at the post office. She'd called her "The Prize."
Roger King is a Ph.D. in Agricultural Economics from the University of Reading in England, where he was on the faculty until resigning to devote more time to fiction. His first degree was in Food Science from the University of Nottingham. He was invited to teach at Ahmadu Bello University in Nigeria, which began his involvement with Africa and rural poverty. His first novel, Horizontal Hotel, was published by André Deutsch in 1983. The Irish Times called the book “a searing invocation of modern Africa,” and The Guardian wrote, “All is trembling on the edge of breakdown, yet the writing stays cool; the effect is of a quiet delirium.”
Editor: Nadeem Noor
My New Mexico village, though determinedly and anciently Hispanic, had a minority of Anglo immigrants seeking a simpler life. Within this group, this woman was agreed to be the most beautiful and accomplished. Her handsome husband had found her when she was working as a paleontologist in Africa and had enticed her back to her native America, and to this village. The Prize. While I blinked into the light, questioning my own eyes, she remained composed in front of me, a tableau of mother and child. "I'm Mary," she said, "and this is Zoe."
Then she said in a low voice, that she had heard that I was ill and wondered if anyone was helping—perhaps she could shop for me, since she was driving into Taos that day. I hurried to say yes, mentioning a few ill-considered items she might buy. I was sick and alone; the important thing was that she should return.
In the two months I'd been there, I'd had only one other visitor: an inexplicable Great Dane who bustled in, made a brisk tour of the rooms, then nodded in my direction and left without breaking stride, never to be seen again. He might have been a hallucination. But Mary and Zoe were real. And human.
I was living alone in a lovely adobe house on the outskirts of this mountain village because nine months earlier I had suddenly collapsed in a gym in Spokane, Washington, and had not yet recovered. Standing up and thinking straight were daily struggles, and my body was a collection of aches, systemic malfunctions, and muscles that refused to obey orders.
At the time of my collapse I'd been a visiting professor, a novelist recently invited from England, set on starting a new life. Since I had no life yet in Spokane, and a friend of a friend had a house to rent in New Mexico, I went there to convalesce and return to vigor. So far there was no progress; I spent my days motionless in bed or on the couch, waiting for sufficient pools of energy to accumulate for occasional bursts of shopping or cooking or other essentials of life. A visit to the bathroom often required an hour of stillness in preparation and another to recover.
The illness that had struck me suddenly in the Spokane gym was Myalgic Encephalomyelitis (ME), generally known as chronic fatigue syndrome. "Fatigue" in this demeaning usage is misleading. For sufferers—over a million in the United States—it means a comprehensively debilitating set of physical and mental dysfunctions. Many people are profoundly and permanently disabled. One likely explanation is viral braindamage resulting from an immune system failure. The regulation of the body goes awry; a madman has seized the controls. There is no cure, but when I met Mary, 20 years ago, I did not believe this. I believed it might be serious for less robust people, but for me, a man of 43 who'd worked around the world and shrugged off tropical diseases, return to full health was a certainty—just a matter of time.
First came Mary's offer to shop, then tea, then tea and conversation, then tea and conversation and 5-year-old Zoe on my lap. Then a visit from Mary alone. It emerged that she had recently left her husband, but had returned for the sake of her daughter. She might leave again, she thought. She might leave with me.
I was not a good prospect. I had some modest savings, but on my good days I could do only a fraction of what a healthy person could do. On bad days I could do almost nothing. Yet, miraculously, Mary wanted me as much as I wanted her.
At heart she was a gentle person who had grown up in a loving household of women after her father had abandoned them. In a moment of confession that went against her private nature, she admitted that in spite of her outward sheen she often felt too small for the world. Her husband was assertive and brash; she could no longer bear this besieging of her inner self. She would leave and take Zoe with her. And me, she would take me too.
Later I came to understand that it was my sickness that brought Mary to me. In health, I might have tried to match, impress, or capture her, and she would have shied away. But in illness, with its enforced stillness and humility, she had come to me. She was its prize.
Mary and Zoe moved to a cottage outside Santa Fe, and when all was prepared, I joined them. The house was already crammed with their belongings, so my life was subsidiary to theirs, a smallness I would never have accepted in health, another grace from illness. Mary's ex, a decent man, never wavered in his friendliness. I took this to be a further benefit of disability: It removed me from the ranks of challenging men. We conspired in the care of Zoe, who loved us both.
In the beginning I told Mary that I expected to soon recover. While we waited for this development, we discovered the peculiar difficulties of our love. My energy was in short and irregular supply, and any physical or mental effort could lead to a crash. Priorities formed in me. First, Zoe, through ages 5, 6, 7, must be shielded from any sense of my limitations. I must carry her giggling to her bath each night—blessedly, no distance in the one-story house—regardless of the cost to me. She would always have my attention when she needed it, and be provided with protection and nourishment when Mary was off excavating dinosaurs.
Mary had what was left of me—never as much as I wished. Even the pleasant sociability of being with someone I loved, the laughing and touching, came at a cost that could not be restored by her nurturing. There were hard choices to make.
When we made love—and we wanted to make love—it needed to be first thing in the morning, before I was depleted by the day. Lovemaking, by necessity slow, and therefore lengthy, and none the worse for this, left me barely conscious, my nervous system stunned into disarray. It would preempt the day, forbidding a planned drive to the store, making later dinner preparations a nightmare of effort.
This was the choice in my life with Mary: I could have achievement either in the love or in the labor.
She never complained. But the truth was that we were in a triangular relationship with an imperious third party, ME disease. Fickle and changeable, it was the tyrant among us—deaf to entreaty, insistent on the priority of its needs.
We continued in this way for three years, our family completed by the arrival of Arthur, a lovable mutt. I'd never settled easily, and this was as settled as I had ever been. My health was calmed but essentially unchanged, and money was becoming short. Mary hinted that it was time I played my part more fully. Any hint from Mary, who hated to ask for anything, carried force. So, persuading myself that time was healing me, I recklessly took a job at a university in San Francisco. Mary and Zoe would join me once I became established.
But I never did. Instead, I became progressively more disabled from the effort of work, and the job ended three years later after a physical and mental collapse. Long before then, Mary had found a far more promising lover.
She'd called, saying, "I can see an alternative future. It's not like when I left my husband. I'm not angry."
"There's someone else?" I asked.
"In a sense," she said.
This reply, typically elliptical, was sufficient. My heart broke in the instant. After I had left, she'd unearthed an old admirer at a paleontology conference, a man with a home and prospects. She loved me, but felt abandoned. I felt this disloyalty unfair, given the enormous effort I was making. But I would never be able to support Mary and Zoe. What illness had given me, illness had taken away.
After thought, Mary added, "You can have Arthur."
It turned out that taking care of Arthur was the love I could manage. After my final collapse, we set out on a slow-motion tour of America's cheap motels. Still obsessing over Mary and Zoe, and wishing to vanish, I was drawn to abandoned mining towns in Nevada, but in the end we came to rest in a small house in the woods of western Massachusetts. Arthur discovered squirrels and, with difficulty, I surrendered to a life of lying down.
ME disease was clear in its requirements. It did not like willful effort or a busy mind. Ambition inflamed it. It wanted no truck with heartbreak. It liked calm: watching birds at the feeder, strolls with Arthur by the brook, fixed habits. It was training me how to live, perhaps how I should always have lived—more simply, more present. Its lesson, that we are part of something larger and do not control our lives, was a timeless one common to all spiritual traditions, a lesson in oneness, the essence of love.
This, then, was my American life—solitary, quiet, a good dog for company. It was not what I had imagined a decade earlier: recognition, prosperity, a lovely wife, adoring children. But one day I woke up and understood that I was all right. I was still sick, but I picked up a pen again and began slowly to write a book about it all. When someone new finally came along, I would have some life to offer.