Life After Deaf

by Noel Holston

  Lunch at the crazy chicken joint marked the beginning of the second half of the best vacation I ever had that encompassed anesthesia, scalpels, and power tools.

  On Thursday, I was feeling sturdy enough for us to spend a good portion of the day touring an exhibit of German Expressionist art at the Los Angeles County Museum of Art (LACMA). Marty drove. I wasn’t feeling quite that clearheaded yet.

  Even though I hid the white bandage under one of Marty’s floral scarves, I was still a little anxious about the prospect of being gaped at, but my self-consciousness was unfounded. I hadn’t factored in that this was Los Angeles, where exotic headgear—here a beret, there a turban, there a hijab—is hardly a rare sight. What was one more guy with a do-rag?

  On the drive back to Seton Hall, Marty pulled to the curb several times to let me hop out and snap photos. We had discovered earlier in the week that the Westlake area of Los Angeles has an abundance of wonderful antique signage, relics of the twenties and thirties, for someone who has an eye fresh enough to notice.

  That evening, we had dinner at an outdoor restaurant in the Farmers Market. On Friday night, we explored Koreatown, randomly choosing one of the many small cafés. The menu was entirely in Korean, and the waitress spoke about ten words of English. We accidentally ordered enough food for five or six people to feast on, including a couple of dishes that looked like something Dr. Seuss dreamed up. It was incredible.

  We had already taken care of the only remaining business earlier in the day: a check-out appointment with Dr. Slattery. He was happy with the incision, happy with the sutures where he’d sewn my outer ear back to my head, and happy with the cap he’d created to block off my ear canal. He alerted us that my ear might bleed on the next day’s flight back to Georgia because of cabin pressure changes, but he said it was nothing to worry about. I made a note to have a pocketful of tissues.

  I didn’t need them. The flight was uneventful. Likewise the drive from Atlanta to Athens. I slept soundly (and soundless) in my own bed that night, aided by a dose of Vicodin. On Sunday, the wait began. Until implant activation number two, I would have only the limited, Widex-assisted hearing in my left ear.

  Chapter 31

  Reactivation

  My activation was scheduled for Monday, April 29, less than two weeks after my surgery. The first time around, the wait had been six weeks. Dr. Slattery was confident that I would be ready sooner this time. He had also graciously deferred to Dr. Steenerson in Atlanta so that I wouldn’t have to fly back to Los Angeles just to have the incision checked. That Sunday night, I slept little. If anything, the second time around was scarier. In the fall of 2010, I had been wildly hopeful, my expectations boosted by what every medical professional I’d dealt with, including my own brother, had said about what a great implant candidate I was. Now, I was, if not a battered veteran, a bruised orange.

  I tamped down my hopes. My hearing with the new implant could be better or about the same. Or worse. By this time, I not only had the benefit of experience, but I had also discovered a US Food and Drug Administration website, www.fda.gov (see Appendix, page 203), that had sections explaining the possible benefits and risks of a wide variety of medical devices, including cochlear implants. It had all the unsentimental, objective, nonpromotional information that I’d had difficulty finding when I was considering an implant the first time.

  What I did know for sure was that the California expedition had been worthwhile even if Dr. Slattery’s efforts were in vain. With Marty’s help, I had negotiated a huge, complex city I had found intimidating even in the years when I had full hearing. I not only had come to realize there was indeed a book to emerge from all this monkey business, but I also had a brainstorm, an idea for another artistic project, a photo book.

  Most important of all, I had met other House Institute patients at the Seton Hall dormitory, including a Vietnam veteran whose decades of combat-related deafness was belatedly corrected by House doctors and a family from Canada whose daughter was undergoing experimental treatment for hereditary, potentially fatal inner-ear tumors. They gave me even more perspective on my modest problem.

  On that sunny April morning, we made the ninety-minute drive from Athens to Dr. Steenerson’s office in northwest Atlanta. He removed the stitches around my ear, cleaned up the incision, and examined my ear canal. He seemed a little disappointed that Dr. Slattery had not chosen to employ the complicated “back-door” maneuver that he had planned to undertake, but he spoke admiringly of the other surgeon’s work.

  He sent us down the hall to Cindy Gary’s office for the activation. Atop my reddened, right ear she placed a gunmetal-gray Cochlear Americas New Freedom processor, the model to which the company had reverted after the Nucleus 5 recall. From the processor trailed a thin electrical cord that was plugged into her laptop. She attached the magnetized connection to the tiny steel chip embedded in my skull. I braced for the big turn-on. I knew not to expect more clarity immediately. I had been bionic for more than two years, but this was a different electrode array differently placed, not to mention a different processor. What I got when Cindy threw the switch was surprising—far better than the shzzzzzz chzzzzzzt tssss chvzzzzr of the 2010 activation—but a long way from clear.

  I could almost make out words she spoke, but they seemed to be at the very bottom of the sound mix, overwhelmed by a reverberating echo that made my head hurt. Even when she toned down the reverb, words sounded distorted, as if they had audio tails trailing behind them. It made me think of a train engine-shaped wooden toy one of my kids had years back. When you blew into it, it approximated the toots of a steam locomotive. On the drive home, Marty’s attempts to talk to me sounded like a choo-choo. We tabled the conversation until later. She turned on NPR. I listened to the whistling sound of the tires on asphalt.

  Once again, I was advised not to use my left-ear hearing aid for a month, except in case of emergency. By the second day, I was wondering if dinner qualified. We had house guests, two young actors from Atlanta who were in rehearsals for a production at Rose of Athens, a theater company for which Marty composes. They’re quick, witty conversationalists we’d known for several years, but they might as well have been pantomiming Punch and Judy puppets for all I could discern. Even with intense concentration, it was hard to make out more than an occasional word. Sound in my implant ear was watery, wheezy, and so seemingly loud that it masked the little bit of hearing I had in my unaided left.

  Next morning, when they’d all gone to the theater, I fired up Cochlear Americas’s Sound and Way Beyond program on my laptop. Time to get back on the horse, I told myself. This is rehab. This is audio calisthenics.

  My scores were lower than those of my first tries two years before. On vowel recognition, I got only eleven out of forty-eight utterances correct.

  On May 10, we went back to the Atlanta Ear Clinic for another mapping session with Cindy Gary. This time, there was a definite uptick. At the end of the tweaking, we had a fifteen-minute conversation about the Diego Rivera-Freida Kahlo exhibit at Atlanta’s High Museum, which Marty and I had recently toured. It was animated and lively. And even with Cindy speaking with her mouth hidden behind a hand-held screen, I understood about 90 percent of her comments and questions. She said it was the best conversation we’d had in the more than two years I’d been a client. I felt like a kindergartner getting a gold star.

  The timing couldn’t have better. On May 16, a Thursday, I had to fly to New York to do my part in staging the Peabody Awards ceremony at the Waldorf-Astoria Hotel. And I was flying unaccompanied. Marty’s Rose of Athens show wouldn’t close until Friday night. She would fly up on Saturday afternoon to join me.

  The show was an adaption of Roald Dahl’s children’s book, James and the Giant Peach, for which she had composed original songs. I contributed one as well, the only song I had written since my hearing and pitch degraded.

  Inspired by the orphaned hero’s vigils from the gables of his gruesome guardians’ Victorian house, it was
titled “I Can See Home.”

  If I climb way up on the rickety roof

  Crane my neck and strain my eyes

  In my I mind I’m sure that I can see

  The place that my heart desires

  I can see home/On the horizon

  I can see home/In my mind’s eye

  I can see home/Wish I could fly by

  I can see home/I can see home

  I couldn’t quite identify with James’s adventure inside a huge, fuzzy fruit, but his yearning? I knew that only too well.

  * * *

  When I boarded my New York flight in Atlanta, my hearing was the sharpest it had been in years. When I landed at LaGuardia, not so sharp, and no idea why. Fatigue. Cabin pressure changes. The salty complimentary pretzels.

  Luckily, the routine was familiar. I got in line and got loaded into a taxi. I could barely understand the driver, but hey, it’s New York City, what else is new? The driver and I managed. I checked in at the Waldorf, texted Marty that I had arrived, placed both my hearing devices on the nightstand—“radio silence,” I call it—and took a nap. I dined alone at Cafe Metro, a deli a couple of blocks from the hotel. I had to have the cashier show me the receipt because I couldn’t understand the total she spoke. I fell asleep later watching Game of Thrones reruns on HBO. I wondered how the Lannisters and Starks dealt with the deaf. Did they feed them to the dragons?

  Our traditional Friday morning meeting with the hotel staff—the event manager, florist, head electrician, et al., seated on one side of a long table and we Peabody folk seated on the other, like facing the Last Supper tableaux—was another silent movie for me to smile and nod through. I realized I had come to pride myself in being able to fake hearing and engagement. At least I thought I was pulling it off.

  After we got our temporary Peabody office set up in the hotel’s Cole Porter suite, I went out roaming midtown Manhattan, as always on these annual trips looking for street scenes and architectural novelties to photograph. I had to cut the photo safari short. Even with my newly mapped implant geared down to the lowest volume setting, the roar and screech of the city on a Friday afternoon was cataclysmic. And silent running was not an option, not with traffic as frantic as it was. I remembered a time when I was driving in the city during my Newsday tenure and almost hit a distracted pedestrian, who turned out to be Neil Simon. He shook his fist at me.

  I was more than distracted. I was nervous. I retreated to my cave at the hotel with a fresh copy of the New Yorker.

  Saturday was quieter. Fewer people on the streets. An almost leisurely feel to the East Side of midtown. I hiked all the way up to Central Park. Later that evening, I curled up on a sofa in my room, found a basketball game on TV, and set my cell phone beside me. I turned off my hearing devices to rest my ears. I had texted Marty the room number. She would text me when she got to the Waldorf.

  When I awoke, I noticed the little red light on my phone was blinking. I checked the time on my cell. It was almost 1 a.m. I frantically went to my text message file and saw that I had a string of them, dating back almost an hour. The last one read, “WTF, baby? I AM OUTSIDE YOUR DOOR!!!”

  I looked toward the door. It was slightly ajar, caught on the safety latch. I quickly put on my ears. Through the narrow opening, a hand protruded. Waving.

  I rushed to the door and opened it to find Marty and a comparably annoyed Waldorf bellman standing a step back into the hallway. “Hey honey,” I said, smiling sheepishly. Marty just gave me an evil look as she dragged her suitcase inside and flopped onto the sofa. I grabbed my wallet and gave the bellman a tip.

  “What the hell were you doing?” she said after I shut the door. “You knew when I was supposed to get here! I’ve been skulking around the hallway for almost an hour. I think the bellhop thought I was a lady of the evening. I had to go downstairs to the front desk, get a porter, and then show an ID and confirm that I was registered to your room. We rang the phone in the room. We had to stop pounding on the door because he was afraid he was going to wake up other guests.”

  I had no answer.

  Chapter 32

  Rabbit Box

  My reconditioned ears perked up when I saw that Rabbit Box, Athens’s answer to the public-radio storytelling series The Moth, had listed “Down the Rabbit Hole” on its website as one of its forthcoming themes. In keeping with my vow to exploit my disability to positive effect whenever possible, I pitched myself via email for the June edition and got a message back telling me I would be on the bill.

  I wrote, memorized, and presented the following rant/yarn at The Melting Point, the Athens music venue that hosts the monthly storytelling jams. I was one of eight performers that evening, facing double-tier seating of about 250 people.

  I stepped up to the microphone in khakis, a single spotlight on me in a white dress shirt and sneakers, my script in hand. I dropped the pages to the stage and began by telling the audience that however long, convoluted, and preposterous it might seem, it was in fact like a Reader’s Digest version, condensed and simplified and cleansed of numerous expletives:

  I’m not sure how much you know about the topography of our beloved Peach state, but in addition to mountains and swamps and savanna, it has an enormous rabbit hole. Not just a single rabbit hole, either, but a warren of labyrinth-like proportions with portals in Columbus, Atlanta, and other places. It’s a strange, nonsensical maze entirely worthy of Lewis Carroll and his Jabberwock and Red Queen and Tweedle Dee and Dum.

  You may recognize this rabbit hole by its common name—Blue Cross Blue Shield of Georgia—or by its acronym, the very fitting BC BS.

  Now, we all know that insurance companies sometimes seem to go out of their way to make transactions difficult for their clients. You can get the feeling they’re hoping you’ll get frustrated and give up. But I didn’t truly appreciate Blue Cross Blue Shield of Georgia’s Mad Hatter sensibility until I had the misfortune of waking up one morning in March 2010 to find myself, for all practical purposes, deaf.

  One of those practical purposes was communicating by telephone. After trying various drugs and therapies, the ear specialist I was seeing determined that a cochlear implant—a sort of bionic ear—was my only hope of hearing much again. I had to start wrangling with BCBS over coverage. They disputed whether I was deaf enough.

  I couldn’t phone them, so I went to their website, thinking I would start an email dialogue. But, it turned out, you can’t have an email correspondence with them. You can only email to request a call back.

  Which I did. And there ensued a series of conversations that went something like this.

  My wife would answer the phone. A BCBS representative would say, “May I speak to Mr. Holston?” Marty would say, “I’m sorry, but Mr. Holston has lost his hearing. He can’t talk on the phone. You can talk to him through me.”

  And the BCBS customer service rep would say, “Sorry, but you’re not authorized to speak for him.” And she would say, “Well, he can’t hear, but he can talk. What if I write down what you need from him so he can read it and then answer you aloud?” And the rep would say, “Sorry, we can’t do that.”

  And she would say, “Why?” And the rep would say, “How do we know it’s really him?”

  And Marty would say, “Well, the same way you’d have known if he had answered the phone.” And they would not be amused.

  She ultimately learned that I needed to fill out something called a HIPPA form that would allow her to speak for me. I would need to download the form from the website, fill it out, and fax it to a BCBS number.

  I did this. And the next time BCBS called, we went through the same nutty conversation. I filled out HIPPA forms four times before they finally acknowledged Marty as my designated spokesperson. The first three forms just disappeared into the rabbit hole.

  I finally had cochlear implant surgery October 2010, and BCBS, bless its little bunny heart, paid for it. And I got out of their hair, pardon the expression.

  Alas, the cochlear implant w
as not working as it was supposed to work. By early 2011, it was pretty clear something was amiss. Both the manufacturer and my doctors recommended a do-over. I had to revisit the rabbit hole.

  By this time, since I still couldn’t talk on the phone, I had acquired a CapTel phone—a phone that translates the worlds of the person you call into captions you can read on a little screen. I wanted to spare my wife the frustration, so I tried calling BCBS.

  Trouble was, there’s a time delay on the captions. So when I didn’t respond immediately to the automated systems’ request for various information—punching in numbers and stuff—it would hang up on me, presuming I had lost interest or died or something.

  So it was back to emails and BCBS calling my house and telling Marty it couldn’t talk to her unless I filled out a HIPPA form.

  I finally got my implant do-over—in April of this year. I had to go to a clinic in Los Angeles for the surgery. No surgeon in Georgia felt qualified to do it. I know this because Blue Cross insisted I see each of them and get a rejection. So, I went to California with an out-of-state, out-of-plan authorization from BCBS in hand.

  But, as they say down in the rabbit hole, it gets curiouser and curiouser. A couple of weeks after my implant do-over, I start getting notices from doctors and labs saying that Blue Cross has declined to pay my claims. They include a big, big bill from the doctor in California who BCBS had authorized to do my surgery. They all wanted their money.

  I used my trusty CapTel phone to call BCBS. By now I know all the codes so I don’t get cut off. I finally get a human on the phone and explain what’s going on. She tells me it’s because I turned sixty-five in March and I’m now on Medicare. I tell her I’m not. That I am still employed by UGA and still their client. She says, well, you should have informed us. And I say, well, doesn’t the fact that I’m still paying you several hundred dollars a month in premiums tell you something?