Monday, July 09, 2001

The Whole Story: Part 1, The Descent

A Future and a Hope

“For I know the plans I have for you, declares the Lord, plans for welfare and not for calamity to give you a future and a hope.” Jeremiah 29:11(NASV)

“What’d he say?” my husband asked absently. A young man, who was carrying his young daughter, had just exited the elevator at the Outpatient Center at Johns Hopkins Hospital. The dangling, bare foot of this little one had captured our attention, because it was so peculiar for a cold, December day.

“She just got her cast off,” I replied as we also made our way out of the elevator. We were at the hospital for a “mapping” appointment, scheduled after two months of sound generated by my cochlear implant. It took a few moments before we both realized that a very significant event had just occurred. Could it be that I had heard a passing comment that Gerry had not heard? This was definitely a new experience for both of us, something that had never happened in all our married life!

The Descent

My hearing problems had begun soon after beginning my career as a special education teacher and had progressed (or should I say regressed) in the pattern typical of a person plagued with a sensorineural hearing loss. Bi-annual trips to the audiologist inevitably meant the sad but not surprising news of yet another drop in decibels and the need to invest in a better, more powerful hearing aid. My journey toward deafness was gradual and spanned over two decades, but that did not diminish the devastating effects on my life, professionally and personally. When it was time to speak to my employer about accommodations in the workplace, it felt like the beginning of the end of my professional competency. It was a fairly “tall order” for me to continue to teach phonics to elementary age children with any degree of effectiveness.

I knew that the occasional remark from a colleague or parent intimating that my hearing loss would serve to make me a better, more understanding teacher of children with disabilities was well meaning and sincere. Yet it simply was not true. I had always cared deeply for my young charges and had empathized with their struggles to achieve success in school. I had prided myself in my skills as a resource teacher, honed by nearly 25 years of experience with teaching students of all ages. I knew that what I was dealing with was a decline in teaching skills, not an enhancement, because of my hearing impairment.

My students, for the most part, had been eager to help and to serve as my “ears” whenever they could. My employer was also gracious and willing to act on my suggestions for equipment that might help, such as an amplified phone, a newer model window air conditioner designed for quiet running, a fire alarm with a strobe light, and an FM system to use in class and during faculty meetings. While these assistive listening devices were immensely helpful, I was still having a difficult time coping with the hearing demands of the job.
I guess there is a “line in the sand” when any additional loss in hearing capacity, however small, puts you over the edge in terms of speech comprehension. For me, it occurred sometime in 1999. My acquired lip-reading skills, my ability to fill in the missing words through context clues, and my seasoned aptitude in “faking” it had kept me functional for many years. Now these compensatory strategies were no longer enough. It seemed that the addition of any background noise or any other voices beyond the one person speaking directly to me caused a significant breakdown in communication. I just couldn’t grasp what people were saying!

I think the private realization of my approaching deafness came when I began to understand that being deaf was not really defined as the total absence of sound but rather the inability to understand speech if your eyes are closed. You see, I could no longer understand anything people said when I could not see their faces. Using the telephone, even with a patch cord to transmit the sound to the FM boot on my hearing aid, was not satisfactory. There were the colossal headaches and the ever-present fatigue that comes from the stress of always being on the alert for conversation that might be taking place around me. Many of the sounds amplified by my aid were not only distorted but also painful because of my recruitment problems. I began to dread the thought of another day of social encounters. I had long since removed myself from the daily lunchtime crowd in the teachers’ lounge, choosing to close my classroom door and relish the silence. I prayed that somehow I could make it through the afternoon with some semblance of efficiency.

There were many humiliating incidences that I still recall with raw emotions during those dark days when my hearing aid was no longer adequate for the demands of my job. I had arrived early one morning and had hastily clamored into school with an armload of files and with a mind preoccupied with the myriad of things on my “to do” list. It was now several hours later when I happened by the side door as a colleague was entering the building. She asked, with finger pointing toward the parking lot, “Isn’t that your car over there with the motor running?” I mumbled a feeble, “Yes, thank you” and dashed red-faced to the car. There had already been private embarrassments at home when I would return to the bathroom for a last minute mirror check and discover, to my surprise, that I’d left the water running in the sink, but this event seemed to me to be a very public declaration of the magnitude of my hearing loss.

The social and psychological impact of a profound hearing loss on a person who grew up with normal hearing deserves greater attention than it’s usually afforded. An enormous amount of emotional energy is expended in a desperate attempt to stay connected with friends and family, to continue to share in the spontaneous flow of ideas that maintains relationships. But you sense that you are losing the battle for equal access to communication with each passing day. No more listening to a cassette of relaxing music or keeping abreast of current events by listening to the daily news on the radio during the commute to work. No more picking up the phone to chat with a friend about trivia or about more substantial things that are vital in sustaining friendships. No more enjoyable social outings to restaurants, concerts, movies, or the mall. The burgeoning fears, anxieties, and apprehensions that are attached to new situations, chance encounters, or other social obligations can begin to transform you from a relaxed, confident, and spontaneous person to a withdrawn, tense, and intense observer of life. In short, the stress of my profound hearing impairment was exacting its emotional and physical toll.

Sunday, July 08, 2001

The Whole Story: Part 2, The Decision

The Decision

In March 2000, I was once again seated before my doctor to discuss my annual hearing tests. The additional decline in hearing capability was no surprise but the news that I was now a possible candidate for a cochlear implant was unexpected. My otolaryngologist explained that his policy was to implant the better ear because there was a greater chance of success in the ear that had the most recent stimulation. He suggested that I give it serious consideration and that I pick up some literature at the front desk. My response to this recommendation would have been an immediate, “Let’s schedule it!” if he had advised an implant for my left (“deaf”) ear. But I was not ready to sacrifice the only residual hearing I had left in my right ear. Driving home, Gerry and I discussed the idea of getting a second opinion. The next day he called our insurance company, and then the Listening Center at Johns Hopkins Hospital and arranged a consultation for May 11, 2000, the first of six appointments in the 5-month candidacy process. I was encouraged by the knowledge that surgeons there often implanted the “worst” ear and with great results.

By the time the verdict was in, I was more than ready to proceed with surgery. An implant in my left ear offered me a hope for the future, the possibility of some restored hearing and the prospect of enough speech comprehension to resume some degree of independence and connection with people. The Listening Center was careful to emphasize that there were no guarantees, only the prediction that it was likely that I would hear more environmental sounds than what I was hearing with my hearing aid. Fine … I had nothing to lose, and everything to gain.

Saturday, July 07, 2001

The Whole Story: Part 3, The Discoveries

The Discoveries

I busied myself during the one-month recovery period between surgery and activation by learning Cued Speech. I reasoned that Gerry and I needed a means of communication that would help me with sounds that I might have trouble processing. Cued Speech is a system of hand placements used in conjunction with speech that corresponds with the 44 phonemes of English. Learning Cue has proven to be a wise and practical decision. Gerry uses it to “talk” to me late at night and early in the morning when the implant processor is not connected, or in noisy environments when I’m struggling to understand a word or sentence.

My parents joined us for the momentous day called “hook-up”. I was blessed with being able to hear most of the words of all those in the room from that long-awaited moment when all channels are activated, but no one’s speech possessed a human quality. Gerry’s was sort of a Darth Vader clone, and Mom’s voice did not even sound feminine. But I was thrilled! Let the adventure begin!

Each subsequent “mapping” session at Johns Hopkins was both encouraging and challenging. Joy and amazement swept over me when we compared my pre-implant audiogram and my current post-implant audiogram. Scores on tests of repeating single words had risen from 6% to 84% in just six months! After auditory testing came the exhausting work of “re-mapping” as the audiologist attempted to make program adjustments to address my complaints. It was no easy task for me to accurately describe what I had been hearing that didn’t sound quite right. Initially, both male and female voices sounded similar, like everyone was underwater, having a kind of a monotone “boink” attached to their words. As time passed, it changed to a muffled, fuzzy sound with a buzz like that produced by an oboe. With a later map, the words still seemed too resonant, like reverberation in an overdriven stereo speaker. But I knew the changes were in the right direction, toward the goal of human-sounding speech, and my brain was working overtime.

“What’s that sound?” was my perpetual question to anyone who chanced to be near me. I was like a toddler, alert to every sight and sound and curious about each new sound discovery. Inside my house, I discovered that my dog’s toenails made a clicking sound as she traipsed across the kitchen floor. The microwave beeped, the refrigerator hummed, the water cooler gurgled, and the wall clock audibly ticked away the seconds. The computer was not the silent technology I had always known. From its musical announcement of start up, to its thunk when I click on the wrong thing, or its chattering as my fingers depressed the keys. Who would have thought? The companion printer was also a noisy machine, producing rumbling and chirping sounds in addition to the light and motion and, eventually, the printed page.

The outside world was an even greater wonder. Traffic noise and the roar of airplanes overhead became annoying noise pollutants that interrupted my investigation of more pleasant sounds. Last season’s grasses in a nearby meadow made a crunching noise under my feet. There was a veritable serenade to experience when walking in the woods as twilight approaches: twigs snapping underfoot, leaves rustling with each gust of wind, and tree frogs and cicadas announcing their presence with a continual concert. There was something soothing and serene about listening to the sound of a tiny stream as its crystal clear water trickled over the stones and wound its way downstream. And the birds… oh, the birds! Had their songs had such sweetness and energy when I heard them in my youth?

Gerry’s whistling and the crisp, tinkling sound of music boxes were a pleasure within the first week of “CI sound”, and especially when I began to recognize some of the melodies. I so longed to have music back in my life that I even made a trip to the local Costco store just to finger an electronic keyboard on display, holding my aux mic next to the speaker. A strange phenomenon occurred at various times on the descending scales: a note would go up instead of down. No wonder Gerry, who is gifted with a beautiful baritone voice, was now singing off key! Patience and practice, I’d tell myself. The music of “Peter and the Wolf” was the first recording that sounded somewhat like I remembered it. It was a great CD to use as a kind of aural therapy since it begins with the identifying of single instruments with their melody “lines” and has narration interjected throughout the score.

There was a longing during the first few months of CI sound for that promised return of more human-sounding voices. I had not expected to experience this yearning, a kind of grieving, I suppose, over the absence of that “natural” sound of speech. Though acutely aware of the rich blessing of comprehending most of what people said when I could see their faces, I still wanted to hear people sounding like people! I was only vaguely conscious of a gradual evolution occurring in my brain’s perception of speech, a subtle change from the Darth Vader men and the computerized women’s voices to a sort of tunnel-like, public address system quality to everyone’s speech. At about the time Gerry began to “sing well” again, I realized that people’s voices had more intonation and inflection than in previous weeks, and that my neighbor’s English accent and distinctive tone had returned. When we arrived home one evening from a visit next door, I recall telling Gerry, through tears of gratitude, “Angie sounds like Angie!”

Friday, July 06, 2001

The Whole Story: Part 4, The Delights

The Delights

New delights and unexpected surprises defined the wonder of this adjustment time. These “CI moments” were awesome and created in me a deep sense of gratitude to God for this miraculous technology. Simple things like hearing someone call my name or understanding a private, whispered message brought a smile to my face and heart. I never realized how much more enjoyable television and films could be when you’re able to process more than the visual images and the closed captioned words. “I heard that!” I exclaimed one night when the captioning indicated that the actor had emitted a soft sign. Many outdoor dialogues have a lovely background of chattering birds in the sound track. Watching a biography of the life of John Philip Sousa would have been an educational, engrossing experience in my hearing aid days, but now it was an emotional and moving one as my heart swelled to the sound of his rousing marches, like “The Washington Post” and “The Stars and Stripes Forever”.

I remember feeling triumphant one evening when, as a passenger in the front seat, I realized that I comprehended most of my brother’s words as he chatted from the back seat! Then at a religious convention in March, just 5 months since activation, I sat with a silly smirk on my face after correctly answering the question asked by the woman seated next to me (i.e.,” What was that hymn number?”). Even mundane chores became CI moments, like the time that I had a real shock when my headpiece crackled with static as I emptied the dryer of its “electrifying” contents.

The developers of our residential community sponsored a 4th of July fireworks display that could be viewed from our upstairs bedroom. I positioned myself at the window and prepared to watch with minimal interest, my enthusiasm dampened by the unconscious expectation that I would need to turn off the sound of those painfully loud bangs and just experience the visual display in silence. But, wait… the explosions were loud but not uncomfortable. Were there some pleasant whistle sounds and a swishing noise as the spiraling colors lit up the landscape? I asked Gerry to describe what he was hearing, confirming that my CI was giving me those same sounds. Wow!

Thursday, July 05, 2001

The Whole Story: Part 5, The Destination

The Destination

Adjusting to CI sound is an amazing journey that has no pre-determined destination. With each small victory on the telephone or each independent trip to the store or doctor’s office, I feel like I’m reclaiming the lost ground that was so reluctantly and painfully surrendered over the years. It’s as if the person of Sheila Adams is re-emerging after years of dormancy and despair. Those who knew me then and who know me now speak of the subtle changes in my speech and my demeanor. That blank expression that was often pasted on my face does re-surface from time to time, but the stress from not hearing and the fear of appearing rude or foolish are no longer my constant companion. The future is no longer bleak and limited, but now filled with promise and potential. That sense of being lonely-in-a-crowd is slowly fading as the confidence in my ability to hear is gaining strength. Some of my professional skills are also returning, such as being able to write down what one of my learning disabled students is dictating to me without having to stare intently at his face and then to frantically scribe as much as my short-term memory would retrieve. Maybe one day I will be able to follow one of the many pockets of conversations that go on in the teacher’s workroom at lunchtime. Perhaps soon I will operate the copy machine, collate pages, label files, and talk to a colleague at the same time. Perhaps not.

It always shocks me when my battery dies and the world becomes so suddenly and starkly silent, but with a quick change of the battery, the wonderful sounds of life come flooding back. This routine experience is not without purpose, because it is a healthy reminder that I am still deaf and that I dare not take my hearing for granted. The gift of a cochlear implant “keeps on giving” and in the process, keeps on affecting all aspects of my life in monumental ways. And tomorrow…who knows what CI moment is awaiting me around the next corner! Thanks be to God!

Wednesday, July 04, 2001

Callie could care less about my story

"I sure hope there's not a Part 6!"

Friday, June 15, 2001

My Teaching Career

The Professional Side of my CI Journey

I began my teaching career in 1975 with perfect hearing. I had a special education degree in emotional disturbances, but was hired as a resource teacher for learning disabled (LD) students. I got my first hearing aid in 1980 while teaching fulltime and working on my Masters in LD at night. At that time I had a mild loss in both ears and the audiologist had me decide which ear I want to try a hearing aid. Nowadays, I suspect that he would have recommended two aids. I chose my right ear, thinking that would free my left ear for the telephone and my right hand for writing.

I taught LD students from grades 1 through 11 (mostly elementary) over the next 10 years. My hearing gradually worsened but with the purchase of a more powerful aid about every 3 or 4 years, I managed well. Then my left ear (the unaided one) took a rapid nosedive. No explanations for the decline were forthcoming, despite several MRI’s and a round of steroid treatments.

I began using assistive devices when my right ear began to fail. My school system purchased an FM system, substituted an amplified telephone for the standard model, and installed a strobe light in my classroom for fire alarms. I gave an in-service on hearing impairment at the beginning of the 1999-2000 school year so the teachers and staff would be more aware of my situation and more prepared if and when they encountered HI students in their classrooms.

In January, 2000, after my annual hearing test which confirmed further loss in my right ear, my doctor suggested I consider a cochlear implant in my right (“good”) ear. I began the candidacy process at John Hopkins Hospital in Baltimore in May, hoping that at this renowned facility they would consider implanting my left ear. The candidacy process took 3 months of visits, including a prom stem test that showed viability in my left auditory nerve. Yea!! Surgery was scheduled for my left (“bad”) ear for September 19, 2000.

Choosing which implant device among the 3 available brands was not a particularly difficult one for me. My husband Gerry, a retired electronics specialist for the Navy, felt that Advanced Bionics was technologically superior. Also, the support group available to me in northern Virginia was made up predominantly of AB users. It seemed to me that their advice regarding programming and rehab would be more useful if I had an Advanced Bionics implant.

Activation Day, October 19, 2000, was exactly one month after surgery. My return to teaching in January, 2001, was an incredible milestone, considering the demands of my specialty, phonics instruction, and the relatively short time of re-entry to the hearing world. My CI journey is like an advertisement slogan: it keeps getting better and better !

Sunday, March 18, 2001

CI moments during the first 5 months

Happy to "hear" Santa (my hubby)

  • Day 13 - heard definite female voice
  • Day 17 - heard whole sentence behind me
  • Day 25 - Angie, my English neighbor, sounded like Angie
  • Day 28 - understood my brother talking from backseat of car, in the dark
  • Day 29 - heard word or two of announcements in department store
  • Day 47 - heard man in elevator, had to tell Gerry what he said
  • Day 50 - heard saleslady say, “Are you finding things OK?” without looking at her
  • Day 55 - was able to get instructions for Santa (my husband Gerry) re: where and when he should enter the Shelter House
  • Day 110 - wept for joy during PBS special on John Philip Sousa
  • Day 116 - heard rattle of lid of casserole dish on way to church potluck
  • Day 124 - enjoyed sound of fish tank at restaurant
  • Day 149 - could answer lady’s question about hymn number in large meeting