Life After Deaf

by Noel Holston

  Forget mood music, too. It might as well be cows mooing. Not only does it sound like mush, it also masks hearing what your partner may say. So, no Marvin Gaye, no Anita Baker, no Out of Africa soundtrack, no “Season of the Witch.”

  And that’s only for the warm-up. You have to be careful about getting carried away, forgetting yourself, which kind of defeats the purpose. There are maneuvers that can activate the worst possibilities of both hearing devices simultaneously, a squeal in one ear and a scratch like chalk on a blackboard in the other. More than once I’ve had my implant processor slapped from my ear by my wife’s hand and sent flying across the room.

  The other option, of course, is to leave all the hardware on the night stand to go “natural” and simply remove sound from your half of the encounter. The upside is that squealing electronics are no longer a worry. The downside is it’s much harder to read your partner if you cannot hear words—or sighs or gasps or moans. I never realized how much something as quiet as a whisper, a breath, in my ear mattered, how inspirational it was, until it stopped registering.

  I think about “Physical,” a hit record singer Olivia Newton-John had years back. “Let me hear your body talk,” the pounding, insinuating chorus went. I always assumed the line referred to hearing in the auditory sense, but I’ve learned as a matter of necessity to hear anatomical articulation in other ways. It’s a matter of using other sensors, making yourself alert to changes in temperature, pulse rate, scent, taste, and heartbeat—things I should have been more attuned to all along. So, the big loss ultimately made me more considerate, more engaged, and more receptive.

  It also helps, if you don’t already, to turn on the lights.

  Chapter 20

  The Witch Doctor

  Even as Marty was undergoing radiation, I had begun therapy of my own. The Sound and Way Beyond training program was driving me nuts and making me angry. In January, I engaged the services of a professional speech therapist through Athens Regional Medical Center. The hospital assigned me to Kelly Claas, a young mother of two who mostly worked with children who were deaf or had speech disorders. Her suite was strewn with brightly colored blocks and toys. I did insist on a regular, adult-sized chair.

  Kelly is not a witch doctor, chapter title notwithstanding. It’s simply that she uses Daniel Ling’s “Six-Sound Test,” a basic tool of speech therapy. It includes the sounds “oo,” “eee” and “ah.”

  It reminded me of a popular novelty record of my childhood, “Witch Doctor,” written and performed by David Seville, the guy who later created Alvin and the Chipmunks. The helium-voiced chorus is built around those very vowel sounds.

  Ling’s sound test also covers “mmm,” sssss,” and “sh.” The six sounds are like keys to the hearing universe. Twice a week, I would sit in a chair facing Kelly and try my best to train my implant ear to make sense of spoken sounds and words.

  Initially, she would just hide her face behind a little screen on a wooden stick—like the fans handed out at churches in the South before air conditioning became common—and patiently present me with a randomly shuffled mix of “oo,” “mmm,” “ah, “ssss,” “shhh,” and “ee.” To anyone who hears just fine, it may seem absurd that I had trouble distinguishing “sss” from “shh” or “mmm” from “ah.” I certainly thought so, on an intellectual level, but the reality was that it was maddeningly difficult at first.

  Even as I worked with Kelly and practiced listening at home—Marty read paragraphs from magazines aloud to me so I couldn’t anticipate words—I began to wonder if perhaps there was some virus, some condition still at play in my body. Something that had been missed and gone untreated and that was continuing to have an impact, undermining my progress.

  I remembered what my dad had gone through in the year before a specialist in New Orleans found a lemon-sized tumor inside his skull. Doctors in Jackson, Mississippi, had given him a clean bill of health. When his blackouts persisted, he took almost any advice he got, be it AMA approved or folk wisdom. A chiropractor realigned his spine and cracked his neck. He had all four of his wisdom teeth pulled. Informed that a glass of wine every day might improve his blood pressure and ease the headaches and spells, he grudgingly set aside his temperance-union ways. Every evening before supper, he held his nose and dutifully downed half a jelly glass of Mogen David, the only wine he could get in our dry Mississippi county.

  Thanks to my MRI, I was pretty confident that I didn’t have a tumor. But I embarked on a somewhat similar odyssey, looking for something that might make a difference, that would make the implant kick into gear the way everybody—Amber Rolfes, Dr. Hoffmann, my brother Tim—had expected.

  I am not one to give up easily. When I was a boy, a small, scrawny boy—not the strapping five-foot-eight, 140-pound hulk I am now—I loved baseball, which was practically a religion in that Mickey Mantle-Willie Mays era. The summer I was eight, I tried out for a Little League team. I was not picked by any of the coaches. When I was nine, I tried out again, and, again, my parents got no call. At ages ten, eleven, and twelve, same thing. There were few slots to be filled. I kept practicing, played unsupervised sandlot ball whenever I could, played on a Little League “farm” team on which my teammates, great guys, included a boy who’d had polio when he was younger and a kid who’d shot his right eye out with a BB gun. When I tried out for a Babe Ruth League team when I was thirteen, a coach who lived in my neighborhood picked me. I was ecstatic. And I sat the bench, never played a single inning, until the final game of the season, when my team had the pennant clinched. When I was sent in to pinch-hit late in the game with two men on base, the opposing pitcher, a hefty fifteen-year-old, mocked me by motioning for his outfielders to come in close. I hit his third pitch over the center fielder’s head for a ground-rule double and strolled into second base.

  The following season I was the starting shortstop. The season after that, I made the all-star team. I am not one to give up easily.

  I was game to try anything that might boost my ability to hear. I had acupuncture, lying in a chaise longue in a quiet room with dozens of tiny needles stuck in my ear lobes and neck. I became a client of an alternative, holistic clinic, getting massages and practicing deep breathing. They encouraged me to go gluten-free. Perhaps it was pasta and French bread that were poisoning my ears. I cut out both, and we began baking our own breads with rice and soy flours. I lost almost ten pounds in a month, but my hearing got no better. Like my mysteriously ill father before me, I tried a chiropractor. My tight neck got better. My ears did not. One thing I didn’t do that my dad did was drink wine. I’m not a teetotaler like he was, but booze of any kind tended to dull the hearing in my still-natural left ear. So did eating hot dogs or salami, anything high in salt and nitrates. I got healthier, albeit inadvertently, just not much better at understanding words.

  More and more I wondered: Is the problem not me at all? Is it the equipment?

  ***

  Meanwhile, I sensed that I was losing my identity.

  “How’s your hearing?”

  The question was becoming a joke. A bad joke. If I bumped into somebody I knew at the grocery store, encountered neighbors on a stroll around the horseshoe cul-de-sac where we live, or joined a party, “How’s your hearing?” was almost always the first thing I would be asked. And quite often, the last.

  Serious hearing loss redefines you. It overshadows everything else about you that makes you “you.” I still read newspapers and all sorts of magazines, still had opinions, still went canoeing and bird-watching, and still checked out new restaurants in town. But hardly anybody seemed to care anymore.

  I was now Hearing-Impaired Guy. I was Mos Deaf. People would inquire how I/it was doing honestly, earnestly, with perfectly good intentions. And I would tell them. At first, I tended to tell them at length, but I soon learned to condense my updates. This was partially because I would notice that Marty, wearing a “not again” expression, was distancing herself from me and whomever I was talking to, and partial
ly because I could “hear” myself falling into recitation of overused lines, like an author on a book tour who had done one too many interviews on local radio stations.

  But even after I started to keep my answers shorter, “How’s your hearing?” was at once a conversation starter and stopper. Maybe some people were made uncomfortable by my disability. Maybe, after the courtesy of asking, they couldn’t help pulling away when they realized how tricky it would be to have a true give-and-take. Maybe I was just becoming a bore.

  I hated it. Deafness was making me invisible.

  Chapter 21

  Hello, It’s Me

  Marty and I were grocery shopping at the neighborhood supermarket when a man about my age approached us in the pasta aisle. He mouthed something that I could not understand. Marty translated. He had noticed my implant. He turned his head and pointed. He had one, too.

  He and Marty carried on a conversation while I watched. He pulled a business card from his wallet and gave it to her, nodding toward me. He was a University of Georgia professor. In an email exchange the next day, he told me about his hearing loss and implantation. I asked how he fared in his classes. He said he sometimes had trouble understanding students speaking from the back rows, but otherwise he did just fine. He told me to have patience, better word comprehension would come.

  My patience was being sorely tested. It was six months after my activation, and the most positive development I could point to was that my sense of taste had returned. I had homemade pesto and sweet potato pie to help me stay sane. Without my left-ear hearing aid for support, I could follow only the simplest conversation—and even then, only in a quiet, acoustically perfect room. Amber Reith had brought in a Cochlear Americas field representative to assist her in a mapping session. Still, the predicted clarity did not arrive.

  I had met another implantee while accompanying Marty on a breast-cancer charity walk. His wife was a survivor, too. Dr. Steenerson had done the man’s implant. Marty told them about the struggle I was having. He could hear. He encouraged me to make an appointment with the cochlear audiologist on Dr. Steenerson’s staff, Cindy Gary. He said she was the best and most experienced in the state, not to mention a sweetheart of a human being.

  With Amber Rolfes’ blessing, I made an appointment with Cindy. We started the mapping process over again from scratch. One of the first things she noticed was that five electrodes, all on the outermost end of the array, were getting weak responses or none at all when she tested them. One explanation, she said, would be that they hadn’t made it into my cochlea. Marty told her about Dr. Hoffman’s having met with “resistance” when inserting the array.

  Great, I thought. I’d done some reading. A healthy human has some 15,000 hair cells, about 20 percent of which—3,500—directly transfer information to the brain. A perfectly working implant, with all of its twenty-two electrodes functioning, can approximate only a tiny fraction of that. And here I was with almost a fourth of my electrodes cooling their heels on the patio outside my cochlea.

  Cindy assured us that while this situation was not ideal, she could adjust the mapping to accommodate the missing electrodes. After an exhausting session of more than two hours, I settled on a new map. Cindy tested me by speaking with her mouth hidden from me behind one of those church-fan cardboard squares. I was able to understand most of what she said with no lip-reading assistance. Marty and I headed for the parking lot encouraged.

  Yet, by the time we got onto the freeway, I was already having difficulty understanding Marty. We couldn’t write it off to road noise, either. At home, in a quiet room, I simply couldn’t understand words as well as I had at the ear clinic two hours earlier. What was supposed to happen was that I would comprehend more and more as I acclimated to a new map. Instead, I experienced decline. And this soon became identifiable as a pattern. It was as though my implant were an old piano that lost its pitch soon after the tuner packed up his tools and left: Cindy would remap me. We’d converse freely in her office. I would go home, and the clarity would fade.

  Marty and I wondered whether something was still wrong with me systemically, something as yet undetected that was rendering the implant less effective, or whether the implant itself might be a problem.

  Outside Cindy’s office on a subsequent visit, we bumped into a middle-aged woman who had the next appointment. I could barely understand her, but she and Marty carried on a lively conversation for two or three minutes. In the elevator, Marty leaned in to my left ear and told me the woman had not one but two implants and conversed so naturally it was impossible to tell there was anything wrong with her ears. I was encouraged. Also envious.

  Meanwhile, my efforts to find implantees online with whom I could compare notes had turned up Blue McConnell, a musician in North Carolina. Blue said it had taken her time and practice, but she was back performing again. With other musicians. My implant-modulated pitch was so poor, I couldn’t sing “Twinkle, Twinkle, Little Star” with Marty without sounding like a cat undergoing torture.

  By April 2011, we had decided it was time to get serious about pressing for a reevaluation. Testing for allergies had turned up nothing. Neither had tests for viruses. Maybe I had a faulty implant. Or maybe there was a problem with the surgery. Something wasn’t right, and I knew in my heart that it wasn’t a matter of me not trying hard enough.

  I emailed Dr. Hoffmann by way of NextMD, a password-protected portal through which doctors and patients can communicate with privacy. I wrote:

  I continue to struggle with understanding words with my implant. I’m using the Sound and Way Beyond program and work with a speech therapist two times each week, but I still feel like I’m listening to a radio not quite tuned to the station I want to hear or as though I am trying to eavesdrop through a closed door or a wall.

  About ten days ago, I tried a different cochlear audiologist (Cindy Gary). We spent four hours on mapping, but the improvement, so far, has been slight. She told me that she got no response from the first four electrodes, suggesting that they are not in the cochlea but, rather, the middle ear. She said only a CT scan would confirm that, however.

  If that’s in fact the case, would it have any bearing on my difficulty understanding words?

  Dr. Hoffmann authorized the CT scan. An MRI would have been better, but that was out of the question now that I had metal in my skull. The first try, on May 11, was at St. Mary’s Hospital in Athens, which Blue Cross Blue Shield insisted I use because it was in my HMO plan. The technician had never actually seen an implant before. She went sort of Gomer Pyle over it. Gaaaaaw-lay. She summoned colleagues over to show them. I felt like a sideshow attraction, a two-headed calf.

  She scanned my head from several different angles. She said the film would be sent to Dr. Hoffmann within a day or two. I let her know via NextMD email, and she replied immediately that she would let me know as soon as she had reviewed the film.

  That was that, I figured. Mission accomplished. I directed my attention to preparations for the Peabody Awards ceremony in New York on May 23—the seventieth in the program’s history and my first as a “bionic” PR man. It was easier than the previous year’s stint in Manhattan, when I was still attempting to prop up my natural ears with daily steroids. At planning sessions with the hotel, it was still as if I were watching TV with the mute button on—mouths moving in animated silence across the table from me. But one-on-one and up close, I could understand at least some of what my colleagues said to me.

  We barely had time to get settled back in Athens before it was time to head for Marty’s annual family reunion in Nebraska. She’s one of fourteen kids, so the much-generational assemblage is only slightly smaller and less noisy than the Peabody soiree. And it seemed as though every in-law, niece, and cousin wanted to see and ask about this thing on the side of my head and inquire as to my welfare. Only upon our return to Athens did I remember I had heard nothing regarding my CT scan.

  On June 23, I emailed Dr. Hoffmann. On July 1, she replied, reporting v
ia NextMD that the scan had showed that the implant was “clearly” in the cochlea.

  “The radiology report noted that it is about 8–9 mm past the cochleostomy,” she said. “There is no way to tell about the position of any individual electrodes, as there is not enough detail on the film and the electrodes are microscopic. It appears that most of the implant is in place. I hope this is helpful.”

  Helpful, sort of. Satisfying, not really. But I decided to tough it out. We had a long-scheduled visit to Florida coming up. We were going to see some of my old Orlando Sentinel colleagues and go bird-watching on Sanibel Island off the Gulf Coast near Ft. Myers. In the quiet of my former editor’s den in Orlando, I had the most intelligible conversation I’d had in months. At a dinner party at another old friend’s home, I nodded and pretended to understand even as the lively dinner chatter pounded my ears so hard they rang for hours afterward. It was that unpredictable from day to day.

  On Sanibel, it didn’t matter nearly so much. The island is famously slow-paced and quiet even in the high season, and this was the low. The Sanibel speed limits are a crawl. Most residents and visitors bicycle. There are “Turtle Crossing” signs along the roads, and you are expected to heed them. The beaches are beautiful and shell-strewn, the Gulf waters clear and warm, and the waterfowl varied and plentiful. We saw herons, ibis, and roseate spoonbills. It was a smorgasbord for my other senses. Even my limited ears could pick up the sound of the birds. I wanted to plant a flag and build myself a nest.

  Chapter 22

  Revise and Consent

  In mid-September, a friend alerted me to an article in the Wall Street Journal. Cochlear Ltd., Cochlear Americas’ Australian parent company, was recalling almost forty million dollars’ worth of Nucleus 5s—not the thousands, like mine, that were already in people’s heads all over the world, but those 5s remaining in inventories—in the wake of an unexplained increase in failures. The failure rate was less than 1 percent, but Cochlear Ltd. was being proactive. The company would revert to marketing its previous state-of-the-art model, the Nucleus Freedom and in fact offer Freedoms free to people who needed to have a 5 replaced.