Courage under fire

Step by step, we plodded toward the falls. Barbara is "balance-challenged," so we chose a trail that was paved and relatively straight. The hike to Laurel Falls is less than a mile and a half each way, and I had made it many times before. It was probably the best choice among short hiking trails in the Smokies. There was a time when it was my children who would have had trouble making it to the top. Now my wife, minus both inner ears and part of her cerebellum, had to struggle heroically with herself. It's something she does every day, but not always so visibly. It hurt to watch her.

Barbara survived surgery for a malignant brain tumor at 23. Given 6 months to 3 years to live, she received a massive dose of radiation to extend her life expectancy. It had to be administered through her ears. When I first met her, she already had difficulty walking straight, and had slight hearing loss, particularly on the right, where the tumor was. Over time, her hearing got gradually worse.

Starting out, she used her cane as a balancing rod. She steadied herself sometimes gracefully, sometimes less so. Her pace was slow, so I lingered behind taking pictures and then raced to catch up. Other hikers hurried past her when they could; she kept her eyes focused on the trail, knowing that one misstep could send her sprawling.

One day in 2000, Barbara awoke and complained that her right ear felt stuffed up. Getting out of bed, she fell flat on her face on the floor. She could hear nothing out of that ear, and could barely stand up. The initial diagnosis was dropsy, and she was given diuretics to clear out her inner ear. When her hearing and balance didn't return, we made the first of several trips to Duke Medical Center (a four-hour drive from where we then lived) for second and third opinions.

As the trail rose, Barbara grew visibly more tired. She began using the cane as it was intended, holding it on her right—always her weaker side—to keep herself from falling. Her pace continued, slow but steady. My mother and her husband walked ahead with our children, as Barbara and I continued to lag behind.

After three or four visits to Duke (it all blends together now) we received a definitive diagnosis. A tiny blood vessel—the only one that feeds the inner ear—had undergone a spasm, cutting off circulation to the hair cells that are the root of our sense of hearing. Without a steady supply of oxygen, the hair cells quickly die. Barbara's were hopelessly gone. She would never hear out of that ear again. After a few months of therapy, though, she could now walk reasonably straight. We replaced the hearing aid that she had been wearing in her now useless right ear with one on the left.

As we neared the top, Barbara nearly fell, and from that point she clung steadily to my arm with her free left hand. She was growing increasingly tired, not from physical exertion, but from the effort of remaining steady on her feet. She warned me that she might not be able to make it all the way to the top. The sound of the falls was now audible, and I knew we didn't have much further to go. I tried to reassure her.

As we were preparing to move to Texas to accept my new job at Baylor, Barbara suddenly lost the hearing in her left ear as well. It happened without warning, on the morning of the very day we were planning to travel to Waco to look for a house. Knowing now what was happening, I rushed her to the emergency room, where she endured the first of a series of excruciatingly painful cortisone injections directly into her inner ear. If there was going to be any chance of salvaging her hearing, we were told, we would know within a few weeks.

As we drew near to the falls, I could tell that Barbara was struggling not to break down. I also knew what an enormous sense of accomplishment she would have if she made it to the top, so I gently urged her on. When we finally reached the falls, surrounded by running children and adults snapping pictures, she sat down on the one and only bench and burst into sobs—sobs that she had been holding back, as I well knew, for at least the last ten minutes.

Of course the hearing didn't return, and less than two months later Barbara and I had to move halfway across the country, into a new community where she knew nobody. She was profoundy deaf, and I was amazed that she could stand up at all, but she worked at regaining her balance with grim determination.

After she calmed down, Barbara was glad, as I knew she would be, that she had persevered to the top. We had a pleasant picnic lunch, watched the falls for a while, took some pictures ourselves, and started down as thunder rumbled in the distance. My daughter Jennifer supported Barbara all the way this time, as she positively barreled back to the parking lot, leaving the rest of us in the remote distance. (Ironically, this is how she keeps her balance on a downgrade.)

That fall, Barbara received a cochlear implant in her left ear, and a year later another one on the right. She gradually recovered a modicum of hearing, although she will never be able to hear well again. She can no longer sing in a choir, enjoy a concert, hear a public talk or participate in a group discussion. We are profoundly grateful that she can hear at all. Most people, aware as they are of how she struggles in this regard, never even think of the balance issue and how much it costs her.

Returning to our timeshare, Barbara slept for an hour and a half. I assured her that she had shown extraordinary courage, and set an example our children would remember—one of many as, day after day, she, we and they struggle with two profound disabilities that are barely visible to the outside world. I hurt for her, but I also rejoice with her. Each day will bring its own new challenges, and we will be prepared to deal with them as best we may.