Indra's Net

Procedures can become rituals. Move Solveig’s wheelchair into position, open the curtains, put on her elasticized stockings and shoes. Flatten out the bed, roll Solveig into a sitting position and put on the quilted blue padded harness. Attach the harness to the hoist and lift her into her wheelchair, positioning her as best we can. “How’s that?” I ask. She shifts a little trying to decide. “I guess that’s as good as I get,” she replies. Beyond procedures are good intentions and love.

I make three cups of Red Rose tea with milk and sugar, one after another. While I drink my own tea I watch her agonizing process of moving her right hand with the teacup in it into position so she can drink. Her left hand is completely useless by her side, but she is convinced that if she lets her right hand get away without raising the cup herself, it will become unable to do it at all. It is the hand which manipulates the joystick on her motorized chair, the hand with which she eats. She struggles, spilling tea on herself but usually needs no help by the third cup. No religious ritual could be more meaningful to me.

In June of 2012, I spent five weeks in Yorkshire helping care for my sister Solveig who had been dealing with progressive multiple sclerosis for more than ten years. She had a care worker, her good friend Ann, who came in on weekdays to dress and bathe her and do light housework. Her husband Richard, who normally did the heavy work, was taking a sailing break in Denmark. 

The old Victorian stone house had three floors and a slate roof. It had central heating, was a bulwark against the rigors of a northern life. The top windows looked out across the chimney pots to hills which surrounded the village. The house was like a ship on the sea stocked with whatever we needed. There was nowhere we needed to go, nothing we must do. You were absolutely allowed, by the weather as much as anything, to hunker down and sink into dreams and stories, deep thoughts. I am sure the nearby Brontes, in their time, felt the same.

I was frightened about my role during these weeks, afraid something terrible would happen on my watch, Solveig falling or the mechanical apparatus  we needed not working. But I was determined to learn what life was like for Solveig, help any way I could. “Strictly speaking,” Ken Wilber has said, “there are no others.” Empathy and sharing goes both ways. I could share my health and joy as well as her pain. And her courage was everywhere evident. After years of attempting to “cure” herself, she had found that acceptance was most helpful. She was often comfortable and happy too, the master of her own life.

It turned out to be a particularly rainy month, but it didn’t stop us much. Given the least amount of sun we would be down on the greenway, a railroad track running through the town of Cleckheaton which had been asphalted over to become a biking and running path through the woods. Solveig knew every flower patch. She herself had sprinkled many cans of wildflower seeds on that path. The elderflowers were out, with a delicate fragrance. We found toad flax, daisies, buttercups, blue geraniums, foxgloves and lovely wild roses. The British called our bachelor's buttons corn flowers. There were brilliant orange calendula, lupine, honeysuckle in the trees and the blackberries were blooming. Over the weeks I was there, the hawthornes shown white in the hedges, and then stopped.

I was impressed with how Solveig insisted on her own personhood. “I think I’ll have toast for lunch,” though she couldn’t do a thing about it. She was purposeful, reading for her book club, heading off to sing in her chorus and directing me or Ann in the garden, though she ached to get her own hands in the dirt. Outdoors she was indefatigable. She tore around in her wheelchair on the rough pavements, seemingly fearless. But she was also capable of long periods of quiet concentration.

Several times we had people in for tea and biscuits and sometimes there were nurses or Kerry, the acupuncturist. The house was often full of people and I retreated to my room at the top of the old house to read and write. We also used Skype to communicate with our family, flung far and wide. In the evenings we watched television or movies. History on the BBC, news on Al-Jazeera. Brits seemed to be much better informed than we are. And there were gardening shows, with Solveig’s favorite Monty Don leading the pack.

Time seemed to go very fast since we were “beings” rather than “doings.” We discriminated, made the thousand decisions a day which allowed us to be individuals, talking, thinking, making up worlds and remembered worlds between us. There was nothing we needed to do except take care of ourselves. In the kitchen, I tried to be Solveig’s hands, cooking things as she wanted. We had been reading (via Skype) Wendy Johnson’s wonderful Gardening at the Dragon’s Gate, about the gardens she established at Green Gulch Zen Center for several years. Now we finished it.

Unlike me, Solveig doesn’t have a flow of words in her head at all times. She loved the time she had with her children before they could talk, intuiting their emotions and thoughts by observation. I believe it is a little like what Alan Chadwick once said about soil quality: “When you stop trying to understand it in words, you begin to perceive it.” Solv’s gardens were legendary. She seemed to know what each plant was feeling and needed.

When Richard got back, the two of us went up to Leeds to do errands, leaving Solveig alone. It was hard for me. I knew Solveig would go down into town to her choral group by herself. I reminded her how cold she got when she went out, but she said,”I can’t just sit inside all the time.” Indeed not. Part of her daily demonstrations of courage. I would be leaving soon. I knew now how often she was uncomfortable, and how little I could do about it.

It was Solveig’s vulnerability, her need that made helping her so affecting. She struggled so and then said, sardonically, “Well, that’s as good as I get.” Since being kids, turning off the lights and playing “Bloody Dave, the Pirate,” or making little caves and houses in the bedclothes, Solveig and I have helped each other. We cannot live each other’s lives or make each other’s journeys. But we are able to experience each other as part of a whole. We only know ourselves in relation to each other, after all.

At home, I realized I had been in Cleckheaton so long that it became reality. And then suddenly, it wasn’t. For many days afterward I found myself thinking of Solveig, and how almost addictive that kind of service is. Helping someone be more independent, be themselves feels so good! It seemed more valuable than my own life, where I was the housemother of a busy family. They had missed me, but I had more trouble adjusting back to my life, which by then seemed quite indulgent, than I expected.

I was also newly aware of my husband’s vulnerability, and my own. And how we fit. What a thick web we weave around ourselves, whether we know it or not. We reflect each other, as in the Buddhist metaphor of Indra’s net. This mutual interdependence, each individual connected to the whole, begins in the family. I feel honored each time I am brought to experience this.

In a time of pandemic, on a multi-windowed family video call (Indra’s net, indeed!), my brother told the story of how our father almost died in the 1919 flu epidemic. He was a tiny baby; his mother had turned his face to the wall, as she couldn’t bear to watch him die. But his father, my grandfather, picked him up and carried him around all night, passing his own warmth and life into his newborn son. We looked around at each other. If my grandfather hadn’t done that, none of us would be looking at each other’s lively faces.

I reflect every day on the courage and grace which Solveig has brought to more than twenty years of living with progressive multiple sclerosis. Every one of her actions affects her siblings, her children, their children, and everyone else. This is true for each of us, dewdrops endlessly reflecting each other's light.