Living with a Cochlear Implant

I woke up deaf one morning. It was the Spring of 1971 in Anchorage, Alaska. No warning, no nothing, I was a 17 year-old high school student with perfectly normal hearing! I could hear fine when I went to sleep. Somehow during the night something happened, something broke or something that was perhaps very tentative and hanging by a thread, finally gave up.

Of course at that time I didn't know I was actually deaf. I went to the ear, nose and throat (ENT) doctor who said I had "fluid" in my ears, took home some ear drops and thought that was the end of the matter. Not so!

My hearing was not restored with the ear-drops and the next thing I knew I was on my way to Wilford Hall Medical Center in San Antonio, Texas. My father was a career Air Force man and I was flown from Alaska to Texas on a military medical transport plane.

Two weeks of testing provided no clue as to why I was deaf! It was determined that I had a "conversion reaction" or hysterical deafness! Yep, they basically could not find a cause, so it was all in my mind!

When I was young, I had many ear infections. I had been told that at one point, when I was in first grade, I lost my hearing and had surgery to clear out scar tissue and my hearing was restored. My parents chain-smoked. I once read a research article stating that children of parents who smoke had a higher incidence of ear infections.

When we lived in Biloxi, MS, my sister and I used to follow the mosquito trucks (along with all the neighborhood kids). Basically these were trucks that drove around releasing mosquito repellent in a thick white cloud. All the kids rode their bikes through this cloud of poison for "fun." Who knows how all this might have affected my hearing-but of course nobody wanted to listen to any of that. It was more interesting for me to have a "conversion reaction!"

Back home again, my family was told I needed to be put into the mental ward. If I refused the family "could" lose medical privileges! So off I went for a six week stay in the mental ward. This place came complete with barred windows and barred doors. I was considered a "flight risk" and confined to the floor. Interesting to say the least!

I was put on drugs, they tried to hypnotize me, put me into group therapy. I was newly deafened and did not yet have good lip reading skills. The people in my group had been told to treat me with hostility and to try to make me mad enough to "forget" I was deaf.

I also went through a week of shock treatment! I ended up screaming bloody murder and demanding to be discharged! They let me go home against recommendations and I was told to "come back when you are ready to hear again!"

Four years later, knowing full well I did not have a mental problem, I found a sympathetic doctor who was willing to review my medical records and see if there was something else that that could be done.

He called with the news that they had never bothered to do an evoked potentials test on me. The one test that would prove that my hearing loss was organic was finally done and the verdict was bilateral nerve damage of idiopathic (unknown) origin.

Yippee-I was not crazy, but I had to mourn loss all over again. I was sort of clinging to the hope that it would just come back if I tried hard enough. Now I knew it wouldn't!

By 1985, I was married with one daughter. My husband, who was at that time in the Air Force, got sent on a remote assignment to Iceland. I decided to stay in the states and go back to Connecticut to stay with my family for a year.

In September my sister Cheryl read a newspaper article about a man who had received a cochlear implant in a neighboring town. She immediately called the phone number given and before I knew it I was sitting in the office of Dr Keat Jin Lee, in New Haven, Connecticut.

I was tested and tested and tested and passed with flying colors. My cochlear implant surgery was scheduled! I was implanted with a Storz 4-channel cochlear implant on November 5th, 1985 during a 5-hour surgery. At that time, cochlear implants were still considered experimental and it was a definite leap of faith for me!

The operation was a big deal and so it was pretty much standing room only in the operating room that day. My surgery time was even postponed because one surgeon's flight from San Francisco was delayed and he was assisting! The night before the surgery I was being woken up over and over by smiling doctors who wanted to ask my permission to attend the surgery. It was one big party with a movie camera!

The first month after hook-up was amazing! After 14 years of silence I could hear environmental sounds--for example, the dishwasher changing cycles and the phone ringing. I could tell the difference between male and female voices, but not what they were saying. I could hear planes overhead and traffic sounds. Music sounded pretty bad--so I didn't really bother with it.

During the second month, I couldn't hear the phone ring anymore and other sounds disappeared. My audiologists tried in vain to keep it going, but one channel after another broke down and by the fifth month I had one channel left and every time I wore my speech processor I got an electric shock! I was told to take it off and not try to use it.

With the hope that they might come up with a "fix," I left the internal parts in my head for five years. I finally had the device removed in September, 1990 after a very nasty ear infection in the implanted ear left me at home with visiting nurses coming to the house to hook me up to IV's!

I was told when I had the implant removed that I could have another put in immediately. The company that made my Storz-4 channel had left the cochlear implant business and they had no replacement for me. I could have gotten a different brand, but I decided to wait until they had "perfected" the implants a bit more.

I knew for sure that one day I would have another implant. My failed cochlear implant gave me just enough taste of the future that I could wait and when the time was right I would do it again.

Life went on and I had moved to California, divorced and remarried. In September 2001, I was sent an e-mail from a friend about an entire family who had all received cochlear implants. I did a bit of digging around and found out that the implants had evolved to the point where speech discrimination was a given! My wait was over!

This time around I did a lot of research into cochlear implants and found it a fascinating subject! I signed up for CI forums on the internet and requested materials from all the CI manufacturers. I spent nine months researching them and made my decision about which device I wanted.

After some major insurance hassles, I was again in the operating room for a second cochlear implant! Dr. Dennis Maceri at USC hospital in Los Angeles, California, did the honors on June 18, 2001. My daughter Tara and husband John were there with me. Tara was a bit weepy and Dr. Maceri told her point blank--"Don't cry, your Mother is going to be able to hear again!"

One month later, we all met again at the hospital for the big "hook up" day. My audiologist Ki-Young Portillo, Tara, John, Tara's friend Kristen and my good friend (who had already had her CI surgery) Judy Wagner were all there to share the big day. It was a long day, but when I left the hospital I could hear--amazingly weird hearing, but I knew to expect that at first--the ducks and chipmunks and freakzoid Darth Vader voices--I was on my way!

Today is six months post hook-up for me and each day is a miracle! I was able to start talking on the phone three weeks after hook up! At first it was just short conversations, but as time goes on, I can talk for longer periods, and having a 45minute phone conversation with friends and family members is getting to be commonplace!

I am much more outgoing now and will just walk up and chat with absolutely anyone and everyone. During my deaf years I shied away from a lot of socializing because it was so stressful. There was a period of time (14 years) when I read an entire book every day, sort of a refuge from the solitary confinement of silence.

Today I listen to music like there is no tomorrow! It sounds very close to the way it used to sound. I have an excellent auditory memory and am very pleased with the way things have turned out!

For my birthday, Tara and her fiance Craig took me to the Paul McCartney concert at the Anaheim Pond Stadium. That was such a fairytale for me--sort of like going through a "rags to riches" story. I had never dreamed I would enjoy a rock concert again! She wanted to make it special--we took a limo and the 10 of us sat right up in front of the stage. I recognized almost all the songs and it was a fantastic teary-eyed event!

Things are getting better and better. My friends and family are constantly commenting on how my voice has changed! I am lucky enough that I was asked to participate in some clinical trials. The manufacturer of my implant is headquartered only a two hour drive away and Judy and I were both asked to be part of these trials. This is exciting and wonderful!

Thinking back to that girl I used to be and all that I went through to get to this point seems like a long ordeal. I wouldn't wish it on anyone. Hearing loss is such a traumatic thing to go through. I hope that anyone who might benefit from a cochlear implant will check into it. Life is too short to hang back when you could be listening to MUSIC! ,