DO YOU HEAR WHAT I HEAR?

This year at Christmas time, the miracle of hearing this old Christmas carol still reverberates in my head. My favorite local singing group, Old Hickory, was presenting its annual Christmas concert in Mt. Horeb, WI. For me, one of the many aspects of “loss” I have felt over the years, while coming to accept my hearing impairment, has been the ability to hear music. This December of 1996 I basked in the joy of hearing old familiar songs in a totally new and full dimension!! How did this happen?

Well, listen on..........

I have had a profound hearing loss since the age of approximately fifteen, when I was told I had a 95-decibel hearing loss. My hearing loss remained pretty consistent through my young adult life, but around the age of 38 I experienced a further deterioration of hearing. I now had an average 110-115 decibel loss. I could walk behind a power lawnmower and hear nothing without my hearing aids. Due to the need for high amplification in my hearing aids, I also daily dealt with the stress of listening through the competing background noise of my everyday work environment, as well as in home and social situations. I found as I grew older, my usual finely tuned coping skills and highly developed capacity for speechreading to compliment this was wearing my patience, and most importantly, my energy and stamina wore thin. I needed a weekend to re-energize for the coming workweek. I could only put myself in a noisy social situation for about 2 hours maximum, and then would need to go home and take a nap, due to the stress of speechreading in these situations. Meetings at work did not afford me the luxury of resting afterwards. My hearing loss had come to the point where I was speechreading everything except the vowel sounds of speech. I buried myself in SHHH, learning as much as I could about assistive technology to enable me to participate in various situations. Through SHHH, I participated in a coping workshop presented by Dr. Samuel Trychin, where I learned to become assertive and to understand my unique listening needs and how to cope in the process of meeting those needs. I no longer could use the phone with amplification. I discovered the Wisconsin Telecommunication Relay System, and through their wonderful staff became the trailblazer in using the 2-line Voice Carry Over feature of the relay in Wisconsin. All of these things enhanced my life, but there was still the stress of functioning in a world that is moving faster with a body that is working slower. (You will have to be over 50 to appreciate this last comment, I fear!) I was finding people just do not have TIME or the PATIENCE in a world that is moving at a pace where almost everyone is feeling the stress of “too much to do and too little time”.

In 1988, I first was introduced to information about Cochlear Implants. The Cochlear Corporation presented a seminar in Rockford, IL, which my parents attended. It was here where they met Pat Clickener, who has written many articles in the SHHH Journal about her own experience receiving an implant. I was interested, but wanted to hear first hand, to be able to ask questions about this technology and talk to people who had them. Along the way, as the leader of the Madison SHHH Chapter, I was contacted by a Cochlear Corporation representative asking of MA-SHHH would co-sponsor a seminar in Madison. Eventually, I traveled to Oklahoma City, OK to be evaluated by a cochlear implant center there. I was borderline for meeting the 1988 protocol that would qualify me to be implanted. I was at that time a new user of TWO hearing aids. Adding the second hearing aid raised my speech discrimination scores from 6% to 30%. With this new improvement I was very happy, and for a time seemed to have found some relief.

In 1992 I changed jobs, and found myself in a work situation that clearly was at odds with my hearing needs. It was here that I found the pace of the work environment, the pace of speech in everyday work situations by co-workers (even when I practiced all my hard learned coping skills and utilized assistive devices) impossible for effective communication.

I began looking into cochlear implant options again with my audiologist. Over the years I spent many hours at SHHH conventions talking with the cochlear implant representatives, attended seminars about the latest advances and talked to every cochlear implant user I could find. In 1990 I flew back from the Little Rock SHHH convention sitting between two ladies who had implants, comparing what we heard. I still had unanswered questions, especially related to whether or not people could be re-implanted if there were a device failure, what percentage of speech discrimination scores were obtained. I attended the 1993 Iowa SHHH convention and in 1995 attended the Dallas SHHH convention. The Dallas convention was my turning point. It was here that I met Rocky Stone again, who as many of you may know founded SHHH national. Rocky was implanted when he lost his vision and no longer could see to speechread. Having the opportunity to speak with Rocky, knowing his penchant for researching every aspect of technology, I wanted to know why he chose the particular device he has. I was in awe of how well he could communicate with me, and the vast improvement in his well being now that he could effectively communicate again. I attended a seminar conducted to Dr. Noel Cohen, relating to the current information regarding implants. It was here that I learned that the failure rate for these devices was less that 1%, and that in such cases people have been successfully re-implanted! I learned that in some cases, speech discrimination scores could reach as much as 90%! At long last I had the data in hand that was so elusive in the early days of my investigation. I also found myself having a great deal of difficulty participating in the Dallas convention seminars, despite the assistive technology that is so abundant at these events. The final defining moment was when I attended a “Day at the Ranch” outing held in conjunction with the convention. It was held in a huge Texas size mess hall. The concrete hall just echoed with all the loud hard of hearing voices striving to talk over one another. I was visiting with the ladies with whom I had flown back from Little Rock in 1990. They could actually look at their plates and eat, while I, exhausted from the effort, had an untouched plate, as I needed to watch their every word. These were the events that defined for me the need to start working in earnest to find a way to receive an implant.

I returned home and discussed the options with my audiologist. My insurance coverage specifically excludes coverage for a cochlear implant. I pleaded my case with staff at my employee benefits office that work with the State Insurance Board that determines the benefits for my insurance plan. I learned that my request would not be considered, as the uniform benefit limits are set in legislation that established the insurance benefits. Further I learned that if I were just 15 years older and participating in Medicare, there was at that time 80% coverage for the surgery. I could not wait 15 years, as I needed this NOW, to remain successfully employed!

Fortunately, my audiologist was attending a conference in Iowa, and promised to find out what research was being conducted at the University of Iowa Hospital & Clinics cochlear implant program. When he returned, he had great news! There was one spot left in a research grant if that person qualified. In August of 1995, I traveled to Iowa City to be evaluated. I learned that while I was an excellent candidate, I was not within the protocols set for this particular grant. However, I did meet the protocols for the clinical trials they hoped to soon get underway. I learned there was a new device that was being developed by Cochlear Corporation and that I could be considered for that research program. The problem was, no one could tell me just when the FDA would release this device for clinical trials. The wait was unending, and I must confess to calling the Implant Coordinator almost monthly for any news on the approval of the device.

In July 1996 we were invited to a reunion picnic held at University of Iowa Hospital and Clinics annually for participants in their programs. Here I met others who have implants and in particular met people who endured waits for an approval such as I was experiencing. I found a pen pal that has been a wonderful source of support as this wait continued.

At last!! October 16, 1996 I had an appointment to go to Iowa for a pre-op work up, with surgery tentatively set for the end of the month! I was advised that this date could be delayed, but they were hopeful. I was later informed the device would not be received at the Cochlear Corporation (in Colorado) until early November, so another date was set for the surgery on November 15th. It still was “iffy”, but the doctor felt it was safe to go ahead and schedule the operating room anyway.

NOVEMBER 15, 1996: The Big Day!! My parents wanted to be in Iowa when I had the surgery, so they joined us the evening before surgery. This has been my parent’s lifelong dream that someday there would be technology that would improve my hearing. I know that I was in the prayers of many for a successful surgery. I never for one minute had any doubts that this was the right thing to do, nor did I fear the risks because, after all the years of my own investigation, I had not found a single person who was unhappy with his/her result. I was fully aware of some possible side effects, but felt that whatever happened I would be able to deal with it.

The day arrived with a typical Iowa ice storm. While we arrived at the hospital shortly after the scheduled 6 a.m. arrival time, the anesthesiologist was not so fortunate. Surgery was somewhat delayed, but by now I was completely relaxed. I was impressed with the staff and just knew I was in good hands. Talked briefly with the anesthesiologist and in a whiff I was wheeled out to the surgical suite. Jokingly, I asked to see the internal device, as I had not even seen a picture of this new device (CI24M). The medical resident held up the box, and the next thing I knew the mask went over my face. I awoke some 5 hours later in recovery. My first question was “How did it go?” I was told it was “picture perfect”! The first major hurdle cleared! I remained in the hospital two more days, and traveled home the 17th. Recovery was smooth, although I did experience dizziness and nausea for the first 2-3 days. As to be expected, I tired easily the first few weeks but was back to work in two weeks.

December 18, 1996: The Second Big Day!! Today was the most exciting day of my life next to the day I received my first hearing aid as a small child. The wonder of hearing so many new sounds was just as awesome as I remember the trip out of the audiologist’s office that summer day in 1950. I must confess to my feelings as an adult about the implant. I had heard the description of sound through the implant as being very different at first; some describing voices to sound like “Mickey Mouse”. I wondered what it was going to be like. Would it be useable sound right away? Would I find it unpleasant? Will there be uncomfortable sensations? In as much as all my fellow friends who use cochlear implants told me it would be none of the above, I still had to experience it myself to be a believer! The answer? It was absolutely wonderful! Almost from the very first moment, the surprising thing was I could understand speech very well, and though it sounded slightly different, I could tell the audiologist’s voice from my husband’s in a matter of minutes. After “tuning“ all 22 channels, we took a break for lunch. Going in a noisy cafeteria was going to be a real test. Amazingly, I could hear through all the din of background noise, conversations/exchanges that I never would have understood in my “old” world. Four hours later, back in our motel room, we called my parents to let them know the results of the “connection”. I decided to see if I could hear over the phone, and amazingly, I was able to talk to both my mother and my son, understanding by my own estimate about 80-85% of what they were saying! What an amazing achievement! We returned the next day to “fine tune” my program and then returned home. Three days after the connection, we attended a Christmas concert presented by my favorite local singing group. For the first time, I was able to actually hear all the high pitched tones that add a full dimension to music. In familiar songs, I could hear and understand the words that were sung! When the song “Do you hear what I hear?” was sung I was overcome with emotion. Yes!! I could hear the beautiful medley repeated behind the lead vocalist! Tears ran down my cheeks, tears of joy and appreciation for the ability to hear this beautiful music!

Everyday since the connection has been a day of “firsts”. Particularly since the two week post connection visit to re-tune or “re-map” the speech processor program, I am amazed at the benefits the implant is providing me. Two weeks post connection, I scored 90 and 95% speech comprehension in long sentences. These are sentences I could comprehend only 14% pre-implant. I am able to speak with almost anyone with great accuracy on the telephone utilizing the telephone adapter. Three weeks after my connection, I am able to understand phrases on the radio in the car, actually have “overheard” a co-worker on the phone in the next cubicle, and actually conversed with my husband in the car at night!

As my audiologist has informed me, this is only going to get better. I will be happy if I do not improve at all from here! It has reduced the effort I need to put into each day. While I still need to speechread, I am amazed that I can now watch some programs that have no captions on TV and actually understand most of the content. The sounds of equipment in an ordinary kitchen, beeps and bells that were non-existent in my “former” life, now reduce the need to be so visually focused on my world. The greatest difference, I believe, is the “got pinch myself to believe it” ability to get information via sound vs. visual. One change I have noticed too, is that I am much more likely to strike up a conversation with someone in the passing than I ever would have in the past. Egad!! I might have to respond to their passing response, and suffer embarrassment and loss of spontaneity of the moment! I just get tickled to death now that I arrive to work, get on the elevator and actually hear some of the comments as people arrive. No more feeling that I am a walking isolation chamber, out of sync with the rest of world.

Yes, what a wonderful world this is becoming.........and Yes! I do hear what you hear!!

Carol Burns