By Harriet McBryde Johnson
Several times, in this magazine and elsewhere, Barry wrote that he had lived two lives, one before and one after spinal cord injury. Later, he spoke of a third life, when failing arms and shoulders took away the extreme athleticism that once defined him. During that life, he said, he learned to like looking at wild places from the roads.
When I came to know and love him, he seemed to be headed toward a fourth life. His upper body had jumped to a new dimension of dysfunctionality. Even modest exertion could trigger crashing fatigue. Ordinary things, like getting out of bed, dressing, driving, going to the grocery store, even sitting up, became increasingly difficult and painful. After shoulder surgery in 2003, some of these things went from agonizing to impossible. He had to get help.
He knew he had not only survived, but thrived with other changes. He could do it again. Clearly. But he was filled with dread. If he couldn’t live alone with his very own view of the Colorado Rockies, couldn’t drive to the grocery store, couldn’t prepare his food, what then? Paid staff until the money ran out? The tricky minuet of family caregiving? A convenient condo on the bus line? Assisted living? Meals on Wheels? Egad. Surely not for the Lion of the Himalayas!
As a dyed-in-the-wool softy, a lifelong user of personal assistance for almost everything, I had an idyllic vision of Barry’s fourth life. Can’t drive? Not a problem. They make these things called drivers’ seats. Snap one in and even a leg-user can handle the van. Personal assistance? Easy. A couple of good workers to come in on schedule and within budget. To deal with the occasional, unscheduled plumbing leak or remote control fumble? A starving artist, ideally an earnest young writer, communing with nature like Thoreau, but carrying a beeper. In that inspiring landscape, with Barry’s brilliant editorial gifts close at hand, who knows? A Great Book could be born. Two in fact. Retired from work, relieved of pointless self-care tasks, managing his affairs efficiently and without any hullabaloo, Barry could devote his precious time and energy to writing for an appreciative public and, of course, for me. Going soft with style and grace, he’d acquire important new insights to transmit in beautiful prose. With an expert like me to show him the ropes, he’d become a softy to make all of us other softies proud. He’d do for us what he did for hotshot paras 30 years ago.
Things didn’t go the way I planned. Barry fought the changes. He said no to his body’s cry for ease. Instead of getting a driver, he bought a higher-tech van he could drive–short distances, sometimes. To continue to cook–a little–he bought his first wheelchair-height