Bedside Pilgrimage

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High School Graduation 1988. I can see the cyst on the back of my daughter’s head.

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For the last few months, up until his death from cancer, I regularly sat in a nursing and rehab center by the bed of an old friend. The long corridors, the smell of disinfectant, the sounds of TV sets, the charts on the walls of Scott’s room, the nurses with their clipboards, brought back memories of when my daughter Laurie was in the Eastern Maine Medical Center in Bangor, Maine, and what I would now call my six-week pilgrimage through strange, often surrealistic landscapes.

A little background: From the time she was twelve years old, my daughter had a cyst on the back of her head. Her pediatrician said it was probably harmless, but that if it got larger, she could have it removed. During her senior year in high school, the cyst doubled in size, so during February vacation, Laurie went for surgery. In March of 1988, a routine biopsy determined the cyst to be malignant.

Suddenly, my daughter, her mother, and I were picking up the pieces of our lives and trying to put them back together. The diagnosis forced Laurie to withdraw from an American Field Service program to spend a year abroad, but that summer, when the tumor disappeared after radiation and chemotherapy, she applied to The Portland School of Art, planning to continue her treatments while taking one or two classes. Then, less than a week before school started in September, her leg collapsed while she was walking along a beach. She began physical therapy and made plans to reapply to art school in January. Confined to a walker at home, she found a job painting murals and designing menus for a new restaurant in town. When physical therapy did nothing but cause her more pain, she went into the hospital, at first for more tests, but after she developed a fever, her primary care physician decided to keep her there and begin another round of chemotherapy. That was when I took a leave of absence from teaching and moved into a Ronald McDonald House, less than a mile away from EMMC.

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Summer, 1988, when we were hopeful. It’s hard not to see the irony of her tee-shirt.

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Every morning and evening at the Ronald McDonald House, strangers on a journey none of us wanted to take would sit down together in the dining room to share stories. I’ve forgotten names, but I remember a woman—square and sixtyish—moving in slow motion in and out of the morning shadows cast by the light coming through the window over the sink, as she fried sausages for her husband, getting radiation for prostate cancer. I recall a five-year-old girl who was being treated for a brain tumor, and her stuffed penguin, Opus, sitting on the chair beside her at meals. And a man whose nineteen-year-old daughter’s transplanted kidney, the one he’d given her twelve years earlier, was failing and no one knew what to do next. “I can’t help her this time,” he’d often say to me. “What the hell do I do?”

At no time in my life have I ever felt more like a stranger wandering through an alien land. I had no control over the day’s events, no say in the final outcome. Every day, I would enter Laurie’s room and see that the morphine level on the gizmo intravenously feeding pain medicine was higher than the day before. Contractions in her throat and pain in her esophagus made eating more difficult, until Dr. Brooks made decision to stop the second chemotherapy and to feed her through another IV.  She experienced pain in her leg, ankle, and foot. “I only want it to be over!” she told me. Yet, with each new setback, she’d ask, “What’s next?” What’s next was pneumonia, and test results that revealed her pelvis to be riddled with cancer. Soon she could only sleep for half to three quarters of an hour before contorting with pain. When Doctor Brooks prescribed an epidermal catheter put in so that the morphine could be administered directly to the nerve endings, the doctor who put in the catheter told me Laurie was now receiving as much morphine as anyone had ever received at EMMC.

I recall the morning she opened one eye at me while I sat by her bedside, holding her hand. She was on her back, but her head remained turned to the left, so her left eye was swollen. She reached up and touched my beard. “You need a shave,” she said. Those were the last words she ever said to me. Soon, her breathing became a combination of moaning and gargling. A nurse brought in some kind of suction device to clean out Laurie’s throat. The next night, when I walked into her room, all I could think of was the sound of my mother’s old coffee pot percolating from Laurie’s bed. That morning at 12:15 a.m. my daughter died.

I wish I could say that being with Laurie when she died was some kind of mystical experience, but all I remember was holding her hand and trying to keep her mouth cleared of mucus while tears and snot ran down my face. There was no feeling of the transcendent, no sense of having arrived anywhere. During those weeks, I read books on spirituality and theology. I spent time in the hospital chapel between visits. Yet I have to say that I never felt anything like the presence of God during that time, never felt comforted, experienced nothing except numb emptiness.

Yet, if there’s one thing I’ve learned from writing these blogs it’s that pilgrimage is an interior journey that continues long after the external one is over. As I found out in the months and years after I came back from the Ronald McDonald House, what I now call the God of my Not Understanding had been there. There had been a purpose to each of those days that I’ve never had since. I knew in the morning where I was going and why I was going there. No matter what else was going on, the great mysteries of life and death were always present. I learned more about courage, grace, and strength in the face of suffering from my daughter than from any coach, athlete, or soldier I’ve ever known. The reading I did, my experience with the silence of the hospital chapel, my giving up of control and entering into the unknown, all became the foundation for my life after Laurie’s death.

There were many times during November and December of 1988 when I wished Laurie’s doctor would just give her a shot that would end her suffering, but today, I treasure those last weeks I had with my daughter, They have become a sacred time, and my chair by Laurie’s bedside a sacred place, turning the experience into a pilgrimage— the most arduous of my life, and one I’m still, at some level, making.

Laurie
1987 Self-Portrait

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8 thoughts on “Bedside Pilgrimage

  1. Thank you for your honesty, Rick, for saying clearly that at the time your precious daughter’s death was not a mystical moment or a thing of beauty–that it hurt like hell. And that the connection, the opening into even greater truth, even greater love, came later. So often I think this is what people experience.

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  2. Hi Rick, an honest account that I’m very happy you shared at such a deep level. LOVE the photos. I love her beauty. Thank you. You are right-there is nothing mystical, no “closeness” of/to God. Pretty much nothing…it takes time and intention to rebuild that…by the grace of God.

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