Bill – Excerpt from One Bright Pearl

Bill [an excerpt from One Bright Pearl]

Before I ever heard of Buddhism, I learned the reality of the first noble truth of the Buddha, that life is suffering, from my brother. Bill was born in 1948 when I was five years old. Premature by five months, he was brought home from the hospital through the front door in a bassinette by my father and mother. Maw Maw, my father’s mother, and her mother, Grandma Gamble, and I gathered around the tiny baby. Though they spoke baby words of welcome, I recall the feeling of the moment as tense, hesitant, with as much concern for my mother as for the baby. Perhaps the precariousness of his life lent an unusual seriousness to his arrival, an ambivalent alloy of joy and sadness. Bill had been put into an incubator as soon as he had been delivered. Shortly after that, he had developed pneumonia that cut off an adequate supply of blood and oxygen to his brain. My mother said he turned “black as a stovepipe,” and Dr. Elkins, the family doctor, gave up, saying there was nothing more to be done. My father, by some stroke of intuitive genius, gave my brother mouth to mouth resuscitation. As a result, Bill survived, but with part of his brain paralyzed by the period of oxygen deprivation, and so was diagnosed as having cerebral palsy. The impact was not fully known at first. I remember a vague sense of warning, when I tried to play with him lying on the floor, that I should treat him with special care.

I learned to change his diapers even when they were really stinky and how to be careful not to stick him or me with the pins. I learned how to hold him, and support his head so it didn’t flop around. I spoon fed him in the high chair and rock him to sleep. I learned how to anticipate his moves to keep him from falling over or dropping his drink.

With his hands, Bill could grasp things, but his movements were spastic. Though he was high in what we now call emotional intelligence, his functional, thinking intelligence was very limited, and he never learned to read or write beyond his own name.

When Bill was two, doctors discovered his heart had a leaky valve, and he was taken to St. Louis, Missouri, eighty miles north, for open heart surgery. In 1950 this was a new procedure and considered very risky.

Two years later, the cerebral palsy having left his legs both undeveloped and contracted, he had surgery on his legs, a cutting of the knee ligaments that kept his legs contracted. While it may have relieved some of that contraction tendency, it did nothing to help him walk. His legs’ muscles never developed and his toes tended to curl slightly under his foot, making it difficult for him to wear shoes. For ten years after, following doctors’ orders, we would put him in full waist-to-toe steel braces, painfully forcing his legs to extend, and trying to get him to walk as we held him under the shoulders, or held onto him as he held onto a double pipe railing my father had constructed.

billIn Florida I started driving on my own when I was 14. I would lift Bill into our sporty blue and white Simca and take him with me to the beach as often as I could, carrying him across the sand, sometimes into the water. People would stare wherever we went, whether he was being carried or put into his wheel chair. My mother said, “You just stare right back at them. There’s nothing to be ashamed of.” And I did. I would feel guilty if I didn’t take him with me.

When Bill was 10 and I was 15, we were told there was nothing more to do to enable him to walk, and we stopped putting him in braces. It was easier lifting him without the braces. Moving him from bed to wheelchair, wheel chair to toilet or car, from car to restaurant or wheel chair to a seat in the movie theater, was mostly done by my father or myself, especially as he grew bigger. I identified with the motto on the Christmas seals from Boys Town, “He ain’t heavy. He’s my brother.” It was customary for us to help him get into bed from his wheelchair, then sit beside him for a minute, talking about whatever he brought up, listen to his prayers, then we’d give him a hug before the final tuck-in and good night. On one such night, he asked me as I hovered over him, “Will I ever walk?”

For years I had been in on discussions with my parents about his condition and what could be done. Everything we knew at that time had been tried. The release from braces, while easier on him and us, was also an acceptance of the loss of hope. So I knew the answer. It was nevertheless hard to deliver. I hesitated, then said softly, “No, it doesn’t look like there is anything else we can do.” He cried. I cried. Later when I told my mother, she cried. I don’t remember telling my father.

My brother’s face, beaming with a full happiness and a delight in being with us, as well as his body, relatively helpless and dependent, are with me always, indelibly shaping my experience of everything. From taking care of him I learned patience, and that personal pleasure was less important than another’s need. From his own ability to adapt immediately to what was happening, I learned a certain flexibility, and how often things that throw us off schedule or create unexpected difficulties, are no big deal. From him I learned to be responsible for others beyond myself.  After many years, his self-acceptance and ability to enjoy life remain a teaching for me in taking what one is given and working with it, rather than falling into self-pity.

There can be a certain suffering involved in merely being a witness to the suffering of others, particularly if one allows oneself to identify with the other, to put oneself in their shoes, and not to turn away from what one is experiencing inside oneself.  Knowing wherever I went or whatever I was doing that my brother could not walk, go to school, run, attend parties and work, I felt guilt in the form of an edge of sadness in all the ordinary pleasures of my ambulatory life.

Bearing witness to suffering is an essential theme, some might even say a central purpose, in much of the greatest poetry ever written.To run from the suffering of witness is to stick one’s head in the sand, to pass by on the other side as told in the Good Samaritan story[1].  On the other hand, an over-identification with the suffering of someone deeply close to you, most especially perhaps, parents’ identification with their suffering son or daughter, and their guilt– felt even when they were not responsible for the condition– drains energy for vitality, creativity and adaptation for the entire family. On my father’s dying bed, he told me that he still did not know whether he had done the right thing in resuscitating Bill. I was shocked to hear this from him, and told him it was one of the greatest things he had ever done (I felt like saying, the greatest thing).

To experience an intimate connection with someone who suffers forces one to raise basic questions about life: why is there evil? if God is good, why are bad things allowed to happen? why do the innocent suffer? These were not mere intellectual questions for my parents or for my sister and me: they were cries of pain, anger, guilt, hopelessness that got played out in each of our lives in different ways. The burden of guilt both my parents carried tore away not only at their marriage, but inside each of them in different ways. They got divorced, as do more parents of children with physical or mental difficulties than the rest of the population. My sister and I both overlearned to put others’ needs before our own. After two divorces, my sister still struggles to find the place of letting go in loving. I felt guilty for being able to walk; I felt guilty if I went to the beach with my teenage friends and left him at home.

I saw the questions of suffering everywhere I looked as my world expanded through high school. My college application essay raised the question upfront: what is the meaning and purpose of life in the face of the vast suffering of the innocent? Even though I knew my question came directly from my experience of Bill, I never told Fred Collignon, my best friend in college, about Bill until we graduated. I had taken the question into the study of philosophy in college and then took it on into seminary.

My brother is my life’s koan, a piece of a puzzle that demands a place in any would-be answer. There are many kinds of suffering, more extreme, more extensive than Bill’s personal story. But his story is inextricably part of mine, and any true answer to his situation would certainly be a clue to every other kind of suffering. My brother has therefore shaped my own search for self by requiring a deeper answer than security, pleasure and avoidance of pain. This is what experiences of emptiness do: they drive us deeper, force us to ask deeper questions about life than we would otherwise do.


[1] But wanting to justify himself, he asked Jesus, “And who is my neighbor?” Jesus replied, “A man was going down from Jerusalem to Jericho, and fell into the hands of robbers, who stripped him, beat him, and went away, leaving him half dead. Now by chance a priest was going down that road; and when he saw him, he passed by on the other side. So likewise a Levite, when he came to the place and saw him, passed by on the other side. But a Samaritan while traveling came near him; and when he saw him, he was moved with pity. He went to him and bandaged his wounds, having poured oil and wine on them. Then he put him on his own animal, brought him to an inn, and took care of him. The next day he took out two denarii, gave them to the innkeeper, and said, ‘Take care of him; and when I come back, I will repay you whatever more you spend.’ Which of these three, do you think was a neighbor to the man who fell into the hands of the robbers?” He said, “The one who showed him mercy.” Jesus said to him, “Go and do likewise.”

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