Life After Deaf

by Noel Holston

  Cochlear Ltd.’s stock price dropped. My hopes skyrocketed. There was apparently no danger. My Nucleus 5 wasn’t going to explode in my head or catch on fire, but maybe it was the source of my difficulties.

  It turned out to be a false alarm where I was concerned. The malfunction didn’t entail poor performance. The flawed 5s were just quitting on people. Mine had never stopped working. It just didn’t work as well as I wanted.

  During this stretch, I was flitting between mapping sessions with Cindy Gary at Dr. Steenerson’s office and Piedmont’s Amber Rolfes. For the former, I had to pay out of pocket. Amber was covered by insurance. For a session with her in September, Amber had Cochlear Americas’s southeastern rep sit in. I complained during the mapping that I felt a painful throbbing sensation when some of the electrodes were triggered even though I couldn’t hear any beeping. They found that the first seven electrodes in the array of twenty-two were not getting an auditory response. The Cochlear rep wondered if the fluctuations of my hearing might be the result of some systemic problem. I asked Amber to send Dr. Hoffmann a memo about all this rather than risk me misrepresenting the facts.

  Dr. Hoffmann soon thereafter emailed me that after having consulted with the Cochlear Americas rep, she thought it would be a good idea to have the company’s chief medical officer look at my scan.

  On December 8, one of Hoffmann’s assistants mailed to say that Cochlear’s Dr. Peter Weber had called her a few days earlier. She said that both he and a neuroradiologist on staff had reviewed my scan.

  “Although the positioning looks adequate,” she reported, “he cannot say if the electrode had folded over slightly or could have been migrating out of the cochlea. He recommended a plain-film X-ray for further evaluation.”

  I had the X-ray done, again using St. Mary’s Hospital in Athens, as instructed by Blue Cross Blue Shield. On the 21st, I got an email from Hoffmann’s office. The assistant said that the report indicated that a mastoid scan had been done, but the film included was a chest X-ray.

  “Do you remember what they X-rayed at your appointment”? she asked.

  I emailed back that unless the technician had very bad aim, it was my head that had been X-rayed—from a variety of angles. She suggested I call St. Mary’s and ask them what happened.

  I couldn’t call, of course, so I had to go to the hospital’s billing department, take a number, and wait to see a customer service rep. They eventually found the X-rays of my head and sent them to Hoffmann’s office. I was happy to learn somebody’s lungs were fine.

  Shortly after New Year’s, Hoffmann emailed to say that she had gotten a call from Cochlear Americas’s Weber. She said he’d had a chance to review the X-ray and noted that it was overexposed and not particularly useful.

  “He reports that he cannot see the tip of the electrode,” she said. “I did report to him that we had obtained a film at Piedmont Hospital at the time of surgery, and we can compare any other films to that one done initially. It would be helpful to know if the electrode is still in an adequate position. We can repeat the film at Piedmont if you would like to come to Atlanta. Dr. Weber also said that we may consider replacing the implant with revision surgery.”

  Revision surgery? A do-over? Marty and I each did a double take. Are they finally going to acknowledge that this isn’t just a matter of me not trying hard enough to understand simple speech?

  Hoffmann’s office arranged for me to have yet another X-ray at a facility in Atlanta that Piedmont ENT often used.

  I dutifully drove the sixty-five miles to Atlanta and had the new X-ray done. On February 27, I emailed Hoffmann: “If you haven’t heard back from Dr. Weber, please press him to weigh in on my X-ray,” I wrote. “Someone needs to make my case a priority. I am having trouble functioning at work, and I am having an increasingly difficult time understanding my wife, whose voice is the easiest for me. I need information so I can act on this problem, the sooner the better.”

  On March 1, she replied:

  I was able to talk with Dr. Weber. He feels that the tip of the implant may be folded over. It is unclear if that would explain the fluctuation in your hearing. He recommends removing the implant and replacing it with revision surgery. Because they have pulled your current implant from the market, it would mean replacing it with the Nucleus Freedom, which has a very good track record.

  Although I have experience with the initial cochlear implant surgery, I have not had to revise many. I am happy to discuss and perform the revision surgery if you would like, but I also understand if you would like to discuss this with another surgeon. Here are the otologists who perform cochlear implants in the Atlanta area.

  I had to sit for a minute to take this news in. Weber had flat out recommended a revision.

  I was game. Marty was gamer. But, as we soon learned, this was no simple matter. It wasn’t as though I could zip over to Hoffmann’s office—or Steenerson’s—and have the thing in my head popped out and replaced like a battery for my wristwatch. And getting Blue Cross Blue Shield of Georgia to approve another big-ticket surgery would likely be more complicated than getting the company to okay a second visit to my dermatologist to check on a worrisome mole.

  Just how complicated, we were about to find out.

  Dr. Hoffmann in effect ruled herself out. She didn’t say outright that she wouldn’t attempt the revision, but her less-than-whole-hearted enthusiasm, along with the fact that she had provided me with a list of alternative surgeons, made our decision easy.

  I wanted Dr. Steenerson. He’s the most revered cochlear surgeon in Atlanta and probably the whole Southeast, and I couldn’t help feeling that if he had been allowed to do the original implant, I might not be in the fix I was in. But Blue Cross Blue Shield had said no in 2010, and there was no guarantee the company would see the revision surgery any differently—if it was approved at all.

  Armed with letters from Cochlear Americas’s medical officer, Hoffmann, and my primary care physician, Dr. Eric Robach, that attested to the reality and extent of my disability, Blue Cross did, after numerous phone calls from Marty and faxes from me, okay the redo. Just not Steenerson.

  Blue Cross’s rep said there were other otology specialists presumably capable of doing an implantation who were in my HMO plan. The company would pay for Steenerson to do it only if all the other cochlear specialists in my coverage area—basically, all of Georgia—said they couldn’t do it or didn’t care to try.

  I felt like Captain Ahab trying to finish off Moby Dick. It crossed my mind that I should just give in and let the whale take me under. But Marty, bless her, applied yet another boot to my posterior.

  “If they think they can just wear us down and we’ll go away, they are sadly mistaken,” she said.

  I went beyond the list Dr. Hoffmann had provided. I went to Blue Cross’s website and wrote down the name, address, and phone number of every otologist and ENT in the state that was in my HMO plan. We started working our way through the list. If he or she had listed an email address or fax number, I made the overture. If there was only a phone number—and this, weirdly enough given that these are doctors who deal with the hearing impaired daily, was often the case—Marty would call.

  It was time-consuming but relatively easy. Most of the ear specialists on the list didn’t do cochlear implants at all, and those who did expressed no interest in attempting to redo another surgeon’s work. One in-plan doctor indicated agreed to take a look at me and my records: Dr. Morton Pendorff.

  We were jazzed. I mean, he was veteran surgeon at a well-regarded clinic with an impressive website. And he was not only on Hoffmann’s list, he was on the list Steenerson’s office had given me back in 2010 when I chose Hoffmann.

  Marty phoned the practice to make an appointment. The earliest date we could get was six weeks later. Once again we’re going, “Geez, is this going to drag on forever?”

  Answer: yes.

  To make sure we could find our way to an early morning appointment, we drove to the
clinic on the outskirts of Atlanta to scope out the building and the parking situation. We also picked out a motel close by and made a reservation so we would not have to leave at four or five in the morning to make sure we didn’t get held up in the metro Atlanta traffic and end up missing the early morning appointment. I also signed and faxed to the office a form granting them permission to acquire my records from Hoffmann, Steenerson, and any other doctor I had seen since March 2010.

  We drove to our chosen motel the afternoon before the appointment, had a nice dinner at a little Thai restaurant nearby, got to bed at a decent hour, and headed for the clinic the next morning. Even early in the day, the waiting room was packed. Compared to the gracious staff at Piedmont ENT, the women behind the reception desk at Pendorff’s office were about as pleasant as the clerks at a Long Island Department of Transportation office. More than an hour passed before my name was called.

  We waited some more in an examination room. While a nurse was taking my pulse and blood pressure, an assistant came in looking irritated and asked if she could have my records. Interpreting for me, Marty said, “What do you mean ‘Where are his records?’? We faxed you the form you sent us authorizing you to request them.” The assistant said no, we were supposed to bring them with us. Marty said, “No, you were authorized to request them.” The assistant argued that we had misunderstood. Marty said, “Well, if that’s the case, why did you have us sign and send back that form?”

  Before this disagreement turned uglier, the doctor arrived. He made Steenerson seem as convivial as Mr. Rogers. He was gruff and impatient, and when he was told I didn’t have my records with me, he was visibly annoyed. He was also under the mistaken impression that I only wanted my implant extracted. No, Marty told him, Cochlear Americas recommended that my implant be replaced. He did not seem embarrassed that he didn’t understand why I had come to see him, despite the fact that Marty had made it very clear when she made the appointment. He agreed to look at my ear and hear a synopsis of my history anyway, but first he sent me off to one of his audiologists for a hearing test while he mulled it over. He didn’t just mull, however. He called Hoffmann for a quick briefing. And Marty, whose hearing is almost as sharp as mine is dull, overheard him out in the hallway telling a nurse that he didn’t expect to have any more success than Hoffmann did with getting the array all the way into my cochlea.

  The audiologist looked as though she were only a few years out of high school. When she found out that I’d been getting mapped by both Amber Rolfes at Piedmont and Cindy Gary at Steenerson’s clinic, she went into lecture mode. She told us that if Dr. Pendorff agreed to tackle my revision, there would be none of this “hopping around.” She said she and she alone would do my mapping.

  When Marty translated this for me, I just nodded. But I knew what she was thinking and I agreed: No way would I “go steady” with this upstart if her mapping didn’t work for me. I would do what I needed to do.

  It turned out, however, that she was irrelevant. Dr. Pendorff said that he would see me again if I wanted to come back—and this time with my records—but that his initial take on my problem, given what I and Hoffmann had told him, was that the chances of improvement were slim.

  We decided to make another appointment. He was, after all, my last in-plan possibility. Marty discovered that we couldn’t get a follow-up until September 26, and the clerk acted as if she were doing us a favor to get us in that soon.

  Both of us were livid. On the drive back to Athens, we decided that we were going to see Dr. Steenerson and see what he said. If we had to pay the bill ourselves, maybe we would, even if we have to mortgage the house. We were sick of the monkey business, the seemingly endless bureaucratic crap.

  Chapter 23

  CapTales

  With hearing loss so pervasive now, it’s hardly surprising that there are all sorts of gadgets on the market to help us cope with everyday life. As the uncertainty of my recovery sank in, I ordered a catalog, thick as a small-town phone book, from which you can send away for an amazing array of gizmos, including an alarm clock that would shake your bed instead of buzzing and signs for your home street that declare, “Caution: Deaf Person.”

  I mail-ordered a doorbell that would set off a flashing light like a police cruiser’s inside the house. I could ignore phone calls while Marty was out, knowing the answering machine would catch them, but it seemed like a good idea for me to know when someone was at the front door. It might be a neighbor wanting to tell me she’d seen a coyote looking for a snack cat.

  I installed the push button outside our front door and plugged the device into an electrical outlet in the kitchen. It produced a high-pitched noise that never failed to startle Marty and freak out the cats, as well as a blinding blinking that always made me feel as though we were about to have a close encounter of the third kind.

  I also decided to try the captioning telephones I’d read about. I ordered a CapTel® for home use in April 2011 and a second for my office not long thereafter. The CapTel is a telephone that comes equipped with a display screen. Calls are routed through a service that uses a combination of voice-recognition software and human transcribers to present a deaf person with a running translation of what the other party on the line is saying. In some states, including Georgia, there are government programs in place to subsidize the purchase of a CapTel, lowering the cost to less than one hundred dollars. And the service itself is free.

  Like close-captioned TV, however, the captioning phone is a great boon that works better in theory than practice. I quickly discovered it’s at its best when the person you are conversing with has the diction of a trained Shakespearean actor, sticks to simple information, and keeps sentences short. If Maggie Smith or Hugh Bonneville phoned me, we’d likely have a jolly good chat, at least at the outset. Even people who possess the needed qualities and start off with the best intentions often drift unconsciously into normal conversational patterns. And it’s most unfortunate for southerners that a drawl tends to throw off the machine, as well.

  After my mother passed away in 2003, I started phoning my elderly Aunt Nell, my second mom, every evening for a short chat. She and my widowed mom had been roommates for many years, and now she was by herself in a fairly large old house. What began out of concern for her grieving settled into ritual. I would tell her what Marty and our kids were up to, and she would tell me the latest news and gossip in Laurel. We had to take a hiatus after my hearing crashed—I sent her a lot of cards and letters instead—but we resumed the ritual when I got my captioning phone. She likes to hear my voice, and it comes through loud and clear to her. The CapTel works as well as a regular phone in that regard.

  On my end on the line, it’s a different story. Not only does she have a classic Southern accent, but she also has a tendency to stream-of-consciousness speech. She rivals William Faulkner for elongated sentences, and she changes topics on a dime. She can utterly confound CapTel. Even when she makes a concerted effort to talk slow, the software—or the transcriber—often mistranslates her words hilariously.

  “We had the most delicious ice cream cones” appears on my little screen as “the most siliceous ice cream coats.”

  Bragging about a visit from her great-grand niece, she said, “I tell you she does not miss a trick.” But the CapTel garbles it into “miss eight track sheep.”

  It’s a never-ending source of amusement, especially when the CapTel misprints this unstintingly proper Methodist lady’s words as the bluest profanity, and a frequent source of vexation.

  I do better with my sons and my brother, all of whom have deep, resonant voices and enunciate well, but CapTel chatting is still most effective when the person on the other end of the line keeps it unnaturally slow and simple. The longer I had a CapTel, the less I used it for anything other than my aunt and the most necessary calls, like checking my credit card balances. CapTel loves the

  computer-generated voice of VISA.

  Chapter 24

  I Say a Little Prayerr />
  In 1973, when I was the Orlando Sentinel’s newly commissioned TV-radio columnist, the local public-TV outlet was one of a handful of stations in the national PBS system to broadcast a production of Bruce Jay Friedman’s off-Broadway play Steambath. The bathhouse was a stand-in for purgatory. A motley assortment of men and women clothed only in white towels killed time trading life stories and philosophies. Meanwhile, a testy Puerto Rican janitor used a bank of TV monitors to randomly keep watch over various people on Earth and arbitrarily afflict them with cancer or arrange fatal, head-on freeway collisions. He ordered acne for Debbie Reynolds.

  It was satire, of course, a rueful joke. I don’t know if Friedman believed in any kind of God, but it was clear he didn’t believe the heartache, hard luck, and pain we all encounter during our limited time on Earth is ordained or orchestrated by a vengeful or contrary creator.

  I mention Steambath because I have never thought of my hearing loss as divine recompense for something I did wrong or didn’t do right. Well, maybe momentarily a few times. It’s hard not to wonder. But as a long-haul rationale, no. It is what it is, so deal with it.

  Religiously speaking, I’ve spent most of my adult life as what an old college buddy called a “Seventh Day Adventurer.” I was raised Methodist and still go back to it from time to time. John Wesley is one of my namesakes. But I have dabbled over time in everything from Judaism to Buddhism. I was occasionally attending services at the Unitarian Universalist Fellowship of Athens at the time of my hearing loss. My wife and I are members there now.