Life After Deaf

by Noel Holston

  My Aunt Nell greeted me at the front door of her red-brick house with a warm smile and a drawled greeting I could not hear. She already had a note pad out on the dining room table. The first question she wrote was “Do you want pecan pie, chess pie, or pound cake?” I opted for some of each. It was good to be home and good to be babied a bit.

  For three days, I did little beyond read magazines and let Nell stuff me with fried chicken, turnip greens, and twice-baked potatoes. At night, we watched old movies my late mom had videotaped off Turner Classics—An Affair to Remember, Casablanca, Gaslight—or played Scrabble like we used to do when my brother and I were kids.

  I went grocery shopping with her wearing a ski cap for which it was much too warm. Better that the customers at Piggly Wiggly glance at the cap, though, than gawk at the strip above my ear that still made it look like someone had trimmed my hair with a blowtorch. I begged off on joining Nell for church on Sunday at First Methodist. I later caught myself humming “Eleanor Rigby,” triggered by memory of the line about a sermon falling on deaf ears.

  On Monday, I headed back to Athens, once again keeping myself awake with a thermos of coffee and loud singing. Marty and I hadn’t spoken in days. Phoning wasn’t an option. Nell called her to tell her I was on my way.

  When I got home, Marty was in a conciliatory mood. She greeted me with a kiss at the door and proudly led me to the dining room, where she was setting out a pot roast dinner. All I could see was that the house was a mess, the table cleared just enough to put down place mats, the kitchen sink filled with pots and dishes, and the counter tops strewn with junk mail and rocks she had collected from the creek behind our house. The usual clutter. I didn’t complain, but annoyance was written all over my face. We ate in silence, both of us fuming, not even bothering to scribble notes on a pad. We slept on opposite edges of the bed.

  The next morning, she asked me to walk outside with her. She led me down our sloping driveway to the tuck-under garage and pointed up to the expanse of stucco above the double-wide door. My mouth fell open. On the wall, in purple and day-glow green spray paint, she had outlined the abstract figure of a woman, about four feet by four, in a large, billowing skirt. Waves of wiggly green and purple stripes pulsed out from both sides.

  “We’ve talked about having a mural done for years,” she mouthed. “So . . .”

  I couldn’t think of anything to say. Leastways, nothing that wasn’t a string of expletives I would regret. Sure, we had talked about a mural. There was an antique shop near downtown that had a mural, a portrait of a bed of bright flowers, on a side wall. We’d talked about hiring one of our neighbors, a visual artist who had muralized the concrete fence around her patio, to do something similar for us. But this—to me, in my shock—just looked like graffiti, like Marty had taken it upon herself to deface our house.

  I hiked up the driveway, got into my car, and drove off. I went to a church parking lot up the hill and walked off—and cursed off—my anger.

  Luckily, we had a counseling session scheduled two days later. With our therapist mediating, I expressed my dismay that Marty would mark up the side of our house without consulting me. She explained that the “Dancing Lady,” as she had titled her day-glow fresco, was not just another of her kooky decorating impulses like hanging old computer discs on strings from tree limbs or lining flower beds with stray hubcaps. It was a way of reclaiming her body after her cancer surgery.

  Our therapist reminded us what different people we are in many ways—deliberative vs. spontaneous, Dr. Fickle vs. Ms. In Stride—but that we share so many more important values. She reminded us that we were each undergoing a life-changing experience that, by itself, would strain a marriage. This was a double whammy. She encouraged Marty to be more cognizant of the possible impact of her impulses and encouraged me to work on my ability to go with the flow.

  When we got home—we’d gone to counseling in separate cars—I walked down the driveway and looked at the Dancing Lady. Really looked. Studied the motion suggested by the skirt and the radiating lines. It was actually pretty good.

  Chapter 14

  We’ll Remember Always, Activation Day

  On the evening of my October 26 implant activation, I sent an email to my sons in Minneapolis and copied a few friends, relatives, and in-laws. I wrote:

  The audiologist programmed and activated my implant this afternoon. It was exciting, surprising and, truth be told, kind of daunting. Nothing I’d read really prepared me for what this is going to be like—a long, slow, learning experience.

  I’m a newborn baby, hearing-wise. I have to re-learn how everything sounds.

  Here’s why (short, oversimplified version): We learn how the world sounds as infants by gradually associating naturally created electrical impulses with thousands of things: words, the bark of a dog, the rattle and pop of an ice maker, the scratch of a match on a box. I am now getting those electrical impulses artificially from my sound processor (hearing aid-like ear piece). They aren’t the same impulses I got with a healthy cochlea, but my brain will eventually match the impulses to words, sounds, etc. It will take time and practice, practice, practice.

  Right now, I can’t identify any specific sound with my “bionic” ear. I hear a kind of tinkling that reminds me of a tiny, wind-up music box. It’s like Tinkerbell is flitting about inside my ear. The encouraging thing is that the tinklings have different tones, patterns, and cadences that I can clearly discern even though I don’t know what they say/mean just yet.

  My job for the next week, before I go back to see the audiologist for more programming, is to feed my brain information so it can make new associations. I am supposed to not only watch and listen closely to people talking to me but to make note of how the slamming of a door “sounds” to my new ear—and how my car sounds when I start it and how the blinkers sound. I also have to condition my ear, which hasn’t heard much in months, to accommodate more and louder sounds. I will work my way up in volume.

  Amber Rolfes, a clinical audiologist at Piedmont ENT, could only activate a portion of the little electrodes now arrayed in my cochlea, lest the auditory nerve be overwhelmed. Every time she activates more electrodes, the range of what I will be able to hear will increase.

  She said this is going to take time and lots of concentration and patience on my part. But she assured me I would eventually be hearing more and better than I have heard in a long, long time—meaning well before my hearing got truly bad. Unlike blindness, deafness can sneak up on you without you even noticing what you lost.

  So, yippee yi yay! I am glad to be getting started and am hoping for the best.

  One little drawback: I will be deafer than usual for a while. The hearing aid I’ve been using in my left ear, the one that still has some residual hearing, has been declared off limits. I’ve been told not to use it for six months, so that my right ear won’t have a crutch.

  So, that’s it for now.

  Well, one other thing: I had no clue, despite all that I read, that the cochlear implant business would be so complicated. My Cochlear Nucleus 5 kit—full of accessories, manuals, educational CDs, battery chargers, you name it—is the size of a carry-on suitcase. There’s even a cord I will be able to plug into a stereo or iPod and relay music directly into my head. Gives a whole new meaning to the term “wired for sound,” eh?

  Love to you all and thank you for your concern.

  Be hearing you soon.

  Dad/Noel

  * * *

  There’s more to it than that. We started the day with a drive from Athens to Piedmont Medical, a steel-gray high-rise in Buckhead that’s home to Dr. Hoffmann’s practice. The drive is ninety minutes on the best, free-flowing traffic day. We gave ourselves an extra half hour to be on the safe side and needed every extra minute. Marty had to drop me off and go look for parking while I made my way upstairs.

  My appointment was with Ms. Rolfes, a relative newcomer to cochlear audiology and a new mom. She had in fact missed my surgery because
she had been on leave, giving birth. She had in fact been on leave, giving birth, when Dr. Hoffmann was giving me my bionic ear.

  One of the first things I noticed in her little office was a framed poster provided by Siemens, a hearing-aid manufacturer: intricate pen-and-ink renderings of antique hearing devices, including the sort of ear horns I associate with ancient, bearded men in rocking chairs on the porches of Confederate veterans’ homes. I think the poster was there to convey the subtle message that this, not so long ago, could have been your fate.

  Amber opened my Nucleus 5 kit, a multilayered suitcase that resembled an extra-extra-large Whitman’s Sampler, with individually boxed processors, coils, magnets, a remote control, batteries, chargers, and ear clips instead of assorted chocolates. She held up one of my processors. It was gun-metal gray, the color chosen in advance by me to blend in with my salt-and-pepper hair. No bigger than a jalapeño, this compact computer would sit atop my right ear, lightly, I soon discovered; the wire, the “coil,” extended from the back of it. The dime-sized magnet at the other end would stick to the chip just inside my skull. Sounds detected by the processor would be relayed through the coil and fire the tiny electrodes deep in my cochlea.

  Amber emphasized that the processor is in no way a hearing aid. It would not amplify sound. Rather, it would convert the sounds it detects into digital signals to which the electrodes on the wire would respond. It would approximate sound.

  She reminded me that my left-ear hearing aid was off limits for a month. To cheat, she said, would only impede the process of my brain adapting to the new, digitized way of hearing. She also made a prediction that made my heart leap.

  “In a few months, you probably won’t even want to bother with the hearing aid,” she said. “You will be hearing so much with your implant, you won’t think it’s necessary.”

  She was getting a wee bit ahead of herself. Before she could activate my implant, she had to calibrate it. She attached a thin, three-foot cable to her laptop and the other end to my processor. I sat the earpiece on my ear and moved the magnet across my skull until I felt it adhere. It made no sound. I could only feel a light, firm suction.

  For the next half hour, though it seemed longer, I heard—well, sort of heard/sort of felt—a succession of beeps inside my head. The beeps would start faintly, grow steadily stronger, then fade again. There would be a slight pause, and then the beep, rising then falling in intensity, would repeat. What Amber was doing was testing the electrodes in the array one by one, ensuring each was functioning and determining how much stimulation I could take at each point. It wasn’t a purely passive experience for me. At each point, I had to tell Amber when she reached the limit of my comfort level. The last thing we wanted was to activate the processor and have a blast of digital sound like a Jimmy Page power chord in my cranium.

  The rock analogy is apt. Programming a processor—“mapping” as it’s known—is very much like sound checks I’ve participated in when I was singing with Marty. You’re standing on the stage with a row of monitors at your feet. The sound person is standing before a board full of levers and dials on the other side of the club or up on the balcony. Like a cochlear audiologist, the sound person is trying to give you a mix you want—a bit more bass, a little less reverb, bring up the volume a notch. He or she can’t hear what you hear. The sound person, or the audiologist, can only take in your verbal feedback and try to translate it into sound you approve, or at least can live with.

  The big reveal was only minutes away. I had been told the voices I would hear with the implant might sound like Mickey Mouse’s. That’s apparently what many implantees have reported. I’ve also read that what I heard might remind me of Stephen Hawking, the astrophysicist, speaking through his voice box. And I had more or less concluded, from a listen during one of my steroid-spiked upswings, that what I was going to hear initially might sound like performance artist-turned-pop star Laurie Anderson using her vocoder, on tunes like “O Superman.”

  I was OK with that. Initially at least, I would be happy with a return of basic function. I would worry about fidelity later.

  With Marty sitting across from me—her fingers crossed, as were mine—Amber turned me on.

  It was as if . . . as if . . . as if I had just flipped on an old, nondigital radio and landed somewhere between signals. There was only static. White noise. Shzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

  Where’s Mickey Mouse? I wondered. Where’s Minnie Mouse?

  Any mouse?

  “Somebody say something,” I said. What I heard in my head was “shzzzzzbizz sss sssstim.”

  I saw Marty’s lips moving. I heard “Shzzzzzz chzzzzzzt tssss chvzzzzr.” I had no idea what the words were, but, on the plus side, I knew she was indeed speaking words. I could detect cadence, rhythm. I could tell some of the indecipherable words were longer than others.

  There was nothing more Amber could do at our session. She wrote on a pad that I needed to give my brain time to begin making sense of the approximated sounds the processor was delivering. Like a baby who gradually differentiates thousands and thousands of variants in what at first seems a storm of furious, inescapable sound, I would sort it out. And because I was an adult who has spent years hearing, I would do it faster.

  “It will get better,” she said, looking straight at me and pantomiming the words.

  Still, she couldn’t hide that she was disappointed. Marty and I were, too. Our drive home to Athens was quiet. We didn’t attempt to talk. All I could hear was the sound of our car zipping along I-85.

  Shzzzzzzzzzzzzzzzzzzzzzzzzzzzz.

  Chapter 15

  Country Roads

  I couldn’t wait to begin my reeducation. I was strongly encouraged not to use my left-ear hearing aid for six more months, the idea being that it would serve as a crutch and slow my implant learning process. I went about the house as though I were exploring a new world. I opened and closed windows, flipped locks, flushed toilets, and turned on a hair dryer, an electric toothbrush, and a microwave oven. I listened intently, making mental notes. I put my ear close to Cadbury, our big dark-chocolate tomcat, hoping to hear his purring motor. It all sounded like so much white noise, though sometimes there were slight variations. If the phone rang, I might recognize it for what it is, or I might mistake it for Marty turning on the coffee grinder. If she called out to me and was out of my line of vision, I would have to scurry around the house, looking for her. I couldn’t tell if she was in the kitchen or in the living room. I couldn’t tell if she was upstairs or down. I had no sense of sonic direction.

  Other days, I felt as though I were wearing a goldfish bowl over my head. A full bowl. I sent out an email update to my sons sarcastically headlined “Welcome to the Undersea World of Noel Cousteau.”

  I also discovered a dismaying side effect. Once I was off painkillers and my appetite returned, I discovered I had no sense of taste. Having everything sound like radio static is bad enough. Having everything taste like unadulterated Cream of Wheat was insult on top of injury. I had pondered developing my other senses to make up for the lack of music.

  I had been warned, kind of. In her pre-op briefing, Dr. Hoffmann had explained that reaching the cochlea required precision drilling in a crucial, complex area, a junction of all sorts of nerves. Potential damage, while rare, included facial paralysis, blindness, and brain injury. I took the risk. Nobody mentioned the possible loss of taste, however, not that I could recall.

  In an email via a secure website through which doctors and patients can communicate privately, Dr. Hoffmann said she was unaware of anyone losing his or her taste after a cochlear operation. She theorized that a nerve had been bruised by the surgery and that my ability to taste food would probably come back.

  Probably? I was thinking, Am I doomed to a life of not being able to distinguish a fried green tomato from a spoonful of peanut butter, except by consistency?

  From the be-thankful-for-small-blessings department, however, there was gravel. I discovered while
out for a walk in my neighborhood that I could hear gravel crunch under my feet. It sounded like I remembered crunching gravel sounding. It was a wonderful sound, clean and brisk and real. The nearby gravel, however, was just spillover from a few driveways onto the pavement. We drove out into the boonies outside Athens and found some actual, full-fledged gravel country roads. Every step was a reward.

  Technology, meanwhile, was determined to be frustrating. Along with my relearning everyday sounds, Amber Rolfes had insisted that I immediately start using Sound and Way Beyond, a training program Cochlear Americas developed and includes in its suitcase kits. All I had to do was upload the provided CD-ROM and start doing exercises covering everything from animal and musical-instrument sounds to spoken words. But I couldn’t upload the CD without an activation code, and I couldn’t get the activation code because Cochlear Americas’ server was down. When I went to the company’s website, the only means of customer service contact I could find initially was a phone number. But of course, talking on the phone was not an option. This was my first experience of something that I—and no doubt thousands of hearing-impaired people—have come to know as commonplace: companies and offices and services that revolve around the deaf and hearing impaired that don’t provide for emails or texts.

  Two weeks after my activation, I heard back, via email, from a Cochlear Americas customer rep. The server was up. I uploaded the program and began to do various exercises and take the follow-up tests. There were exercises involving Vowel Recognition, Consonant Recognition, and whole sentences.