Tumbling Into Writing

by Susan Parker

I was not a writer before my husband, Ralph, had a bicycling accident that left him a C-4 quadriplegic, paralyzed below the shoulders.

He was 55 years old, a graduate of Caltech, and a nuclear physicist. I was a 42-year-old childless jock who worked for an adventure-travel firm leading bicycling trips to exotic locations like Tasmania and Bali.

The only things I ever wrote were postcards, grocery lists, and, occasionally, overblown copy for the company’s travel brochures. But, in the spring of 1994, after Ralph’s accident, all forms of writing became obsolete. I spent my days dealing with doctors, therapists, and social workers. At night, I lay in bed alone, wondering what would happen to us. Ralph and I were now companions only in the sense that he needed me for eating, voiding, and changing his position, the sheets, and the channels on the TV. I thought I would go crazy.

While Ralph was still in ICU fighting for his life, a friend advised me to write down everything that was happening to us. He thought that I might need these notes for a lawsuit. He bought me three spiral notebooks and a pen, and I dutifully jotted down what I saw, heard, smelled, and thought. This may have been the beginning of my writing career, but once Ralph returned home, I never referred back to the notebooks. I knew they were full of bleak thoughts about running away, murder, and suicide. Years later, when I found the notebooks in the corner of a messy closet, I threw them away without looking at them. By then, I had written a memoir about our new life.

Six months after we returned home from the hospital, I began to keep a journal: I scribbled down the things that happened to us—what I saw with my new eyes as a stay-at-home caregiver; who I met; how the world reacted to our new status as a disabled man and his helper. I was encountering people who I never would have run into before: neurologists and psychiatrists, acupuncturists and kinesiologists, African American and Jamaican neighbors, and out-of-luck health-care “professionals”—the people I had come to depend on for my husband’s care and for my own sanity.

We were in and out of the emergency room so often that I started to think of it as my office. Waiting there took an average of seven hours. But I always had a notebook and pen with me. ER became my home-away-from-home.

At our house, we endured visits from social workers, home-health nurses, therapists, and aides; each of them had an agenda and an idiosyncratic timetable. Then, as abruptly as the accident itself, our HMO stopped providing us with home support; we went from multiple helpers to only me. But taking care of Ralph was not a job I could do alone. We needed 24-hour, live-in assistance. However, our insurance did not cover this necessity, so we were forced to become entrepreneurs.

Ralph and I went into the business of keeping him alive and making ends meet. I became our house manager, hiring and firing attendants at a dizzying rate, deciding which flaws we could ignore and which we couldn’t. We went through a succession of drug addicts, alcoholics, thieves, kleptomaniacs, and pedophiles, until finally we found a semi-stable, live-in helper named Jerry, whose only visible drawbacks appeared to be an addiction to gambling and a very bad driving record. Much later, I discovered that he had spent five years in San Quentin for statutory rape, pimping and pandering.

As a recently retired scientist, with 25 years at Lawrence Livermore National Laboratory, Ralph was more comfortable with numbers than with people. Now he was often so overly medicated that he was confused by the constant flow of humanity in and out of our home. I was in charge of everything: his care, our finances, our non-existent social life.

I became best friends with a 300-pound, polyester-and-sequin- swathed neighbor, Mrs. Scott, who took over our kitchen. She kept us supplied with fried chicken, greens, ham hocks, and pound cake. She was my confidant, spiritual advisor, therapist, and surrogate mother. There were moments when I devoutly wished to curl up in her enormous, soft lap and go to sleep for a very long time. There were other times when I wanted to do to her just what she threatened to do to me: slap her upside her big nappy head and knock her into next week or Christmas, whichever came first.

Obviously, I had things to write about. And, oddly enough, I found the time to write: late at night and early in the morning, when Ralph was asleep; on our trips to ER and in the waiting rooms of doctors and counselors. Since we didn’t have a social life and I no longer ran, biked, skied, or climbed, I substituted writing for friendship, exercise, and sex....

Susan Parker's memoir, Tumbling After, will be published by Crown in the spring of 2002.