My eventful story begins in the late 70’s; let’s begin at my birth, when my life’s story began. Everything in my life was as about as normal as everyone’s except my mother’s life dramatically impacted mine. My mom when in her late teens was becoming hard of hearing. In her 20’s being a tomboy caused her to get into a fight. A guy ended up boxing her in both ears at the same time. She immediately became deaf. By the time I was coming into the world she had been deaf for 5 to 10 years. My mother never got to take advantage of the technology to which I have always had access.
I joined the United States Air Force at the age of nineteen. I became a heavy duty truck mechanic. By the time I was 24 years old I was already experiencing bilateral hearing loss. Because I was away from home, little did I know at the time that my sister who was nine years older than I was and my brother who was one year younger than I was were also experiencing hearing loss.
By the time I was 28 I was medically disqualified from my job in the Air Force. Shortly afterwards, I received my first set of hearing aids. I remember upon getting my Hearing Aides (HA) I started hearing sounds I hadn’t heard in a long time. I also noticed that those noises were loud. My wife and I were walking out of the hospital where I received my HAs and she was walking behind me. As we walked she was talking to me and was amazed that I heard her as she spoke from behind me. I enjoyed wearing those hearing aids.
As the years passed my hearing continued to worsen to the point where the hearing aids I received were inadequate for what I needed. From 1984 through 2009 I tried about 7 sets of HAs of all kinds and types. It seemed as my hearing worsened the ringing also became louder. The power of the HAs also increased, but it seemed while I could hear sounds, I couldn’t understand what people would be saying to me. I became more and more frustrated because the more I wanted to hear the more I couldn’t understand what was being said. The last two sets of hearing aids I received I felt did not help me at all.
By this time I had retired from the Air Force and was now dealing with the Veterans Administration (VA). My frustration peaked and I made a decision that it was not worth fighting. I got to the point with conversations with others, if people who knew I was almost deaf cared, they would properly communicate to me so I could understand what they were saying. Many times I no longer cared what anyone said to me. If I was going deaf then Deaf is what I would be. I started learning sign language and making Deaf friends.
At this time I started fighting a lot with my wife over not being able to hear or understand what she was saying. My wife didn’t like my decision to become Deaf. I found my decision was also becoming more and more difficult. My loneliness only worsened. All my friends and family were part of the hearing world. It was as if I was stuck between two worlds, the world of the hearing and the world of the Deaf.
In January of 2009 I went back to the VA and requested for the third time to be examined to see if I could be authorized for a Cochlear Implant (CI). Once again the VA said I didn’t meet the requirements to be fitted with a CI. My frustration peaked. My wife and I decided to get a second opinion. We made an appointment with Dr Jacques Herzog at St Luke’s’ Hospital in St Louis, Mo. After running his own tests on my hearing he told me not only was I eligible in one of my ears but I was eligible in both of my ears.
Well I now faced a dilemma. I didn’t know who Dr Herzog really was. I couldn’t understand why his tests showed that I was eligible for a CI and the VA tests didn’t. My question that plagued me was: Was Dr Herzog in it for the money or did the VA refuse to provide me with the proper medical care because of funding? While I have never been able to determine the motives behind the VA decisions, I did speak very frankly with Dr Herzog about this and was reassured that my desired to hear out-weighed any need to make a buck off of me. I found Dr Herzog to be sincere.
In saying all of that I had to struggle with my own feelings as well. Did I want to give up what little hearing I had to gain a whole lot more hearing----part-time? What I mean by part-time was that I would be unable to wear it near water or wear it when sleeping. I didn’t have a clue how much hearing I would gain. I also knew that after the surgery I would be 100% deaf in that ear without the CI! I wouldn’t be able to wear my CI 24-7. The times I would not be wearing my CI would be at bed time, taking showers, swimming pools and spa or Jacuzzis. At those times I would be totally deaf in the right ear. But how often would I be with my new ear compared to times I would be deaf? It didn’t seem like the times I would be without it my new ear outweighed the benefits.
While I decided to go ahead with getting a Cochlear Implant, I did have a couple of weeks to make the final decision. It would give me time to think about it. I felt more than anything else when I had the surgery to get my implant – I was going to die! No I wasn’t thinking I was going to die physically. Never the less, the world I knew, one way or another---was going to die. If the operation and the CI failed to work for me then I would be deaf for the rest of my life. If the CI did in fact work, then the world I had come to know as normal would die. Either way as we drove to the hospital I knew I faced a death. To tell you the truth the only reason I wanted to get the CI more than anything else is because I wanted the fighting with my wife to stop. I could not believe the benefits I was going to gain. It was my wife who had the hope, the belief that my world would be better. I had no clue as what would happen.
We arrived at the hospital and I went through with the surgery as planned. Afterwards when I woke up I felt great. I was ready to go home that day. As it was I spent the night at St Luke Hospital, the next day Dr Herzog came in took off the bandages and seemed well pleased with the result. It was the last time I would see him for a very long time.
Three weeks later I met with my Audiologist Susan Givens to have my CI activated. She literally turned on my world of sound. At first everyone sounded like Mickey Mouse. Next the men continued to sound like Mickey Mouse and the women sounded like Minnie Mouse. After a time I recognized everyone had their own voice/pitch but they still sounded cartoonish. Eventually the cartoonish pitch faded and people started what I determined was normal.
Normal, now that is an interesting concept. What is normal? I have come to the conclusion that what I have been hearing in my profound loss of hearing was not normal at all. I have no idea if what I am hearing is normal or not. I have decided to just accept what I am hearing as normal hearing.
In saying all of that, the other big thing I have learned is I have forgotten what some of the sounds I am hearing are. I have often come to the conclusion that some of the sounds I hear I need someone to inform me what I am hearing. I have also learned that normal hearing people have lost the art of hearing/listening. The sad truth of the matter is that the longer I adjust to “normal” hearing I too am losing the interest in this art of hearing/listening.
I will give you an example of not knowing what I was hearing: Shortly after receiving my new ear I kept hearing birds in the house. Understand it was very hot outside so all the windows were closed and the A/C was running at full blast. There was no way I could be hearing birds from outside the house. As I searched the house I heard these birds throughout the house everywhere I walked. In frustration I went into the kitchen to make me a hot cup of tea. While standing there waiting for the water to boil I noticed that the birds had stopped chirping. I was amazed and I rushed into the living room to find out what happened to the birds. As I entered the room the chirping of the birds returned. Frustrated I went back to making my tea and I soon discovered the birds were gone once again. I didn’t understand. I stood motionless for a long time. I then found myself rocking back and forth and as I did the birds were once again chirping. I stopped rocking and the birds stopped. I discovered that the sounds I heard were never birds but rather the hardwood floors creaking under my feet. I thought to myself, “Sonny welcome once again to the world of sound.”
I began listening more intently and I soon discovered birds singing their songs. I would ask family and friends what kind of bird was making the song I was hearing. No one seemed to know! I couldn’t believe people weren’t interested in the sounds they were hearing. My own son told me, “Dad, it is just noise; you will get used to it and then learn you too will learn to ignore it.” I thought to myself “What a shame to live in a world of sound only to learn to ignore what you hear.”
I spend many hours listening and watching the birds in my own back yard. There were at least 6 or 7 kinds that would visit the feeders I would put out. It was during this time of watching these birds I notice I could not tell which ones were making what sounds. For you see it is impossible to read the lips of birds. I need to figure out what birds were making what sounds. So I went out and bought a book that would show me the bird, tell me about the habits of the bird and then when I dialed in the correct number the book would sing the song of that bird. I was amazed I could identify the songs to the birds I saw. I enjoy listening to birds to this very day.
Music was very much a part of my life. I am a Christian and I have learned many songs that I love to sing. Not only do I enjoy Christian songs I also enjoy old rock and roll, country, blue grass and my most favorite ballads. Since having been turned on to the sounds of the world around me “Music” is most disgusting noise I have ever heard. I cannot stand to listen to it or even sing it myself. I talked to my Audiologist Susan. She told me that if I ever wanted to enjoy music again I must force to listen to it. I began listening to it. I listened to the music I knew best, I would listen to the same song 30 to 50 times a day. Over and over again I would hear gross sounds I knew I used to love what I now found disgusted me. But I continued to listen. As I did I was finally found some pleasure in what I was hearing I would add another song. Now I am listening to hundreds of songs. New songs that I do not know I have a hard time understanding. I hope to one day very soon enjoy all the music I listen to.
The latest thing that is happening to me is that I have noticed that I am only hearing in one ear. When I first was activated I was like in a bubble of sound. Sound came to me from every direction. I couldn’t tell what I was hearing only from one ear.
I am now scheduled to have surgery on November 24th to receive my second implant. I have read much, emailed many and talked to many more about being bilateral CI hearing. I have heard all kinds of stories. For one thing the more I listen to others the more conflicting stories I hear. I am eager to get my new ear but it also bothers me that I will be completely deaf in both ears without my CIs. I am not sure how I will deal with the deafness when I am without my CIs. I find presently find myself when I am out and about and the battery dies I almost feel like I cannot function at all. No matter where I am if I don’t have a spare battery with me I find no point in sticking around. The environment or social situation I am in makes no difference. I go home and get my battery. Sometimes I would return to the situation but most of the time I would just stay home.
I have come to the conclusion I have not a clue what to expect as I am on the eve of getting my second CI. All I do know is my life is once again is going to change and that I am looking forward to that change.