My Story

How Many Times Do I Have To Grieve?

I was totally surprised when I started feeling angry and sad again. After all, I had just been through a process that brought me back into the hearing world, a miracle of medicine!

I’d had cochlear implant surgery on August 29, 2001 and was realizing my hope of having my hearing restored. On September 26, 2001, I was hooked up to the processor, a small device I wear on my belt, which is connected to a headpiece that is held on by magnet to the internal workings of the implant. On that day, I actually heard my first sound with the implant. The fall of 2001 was filled with visits to my audiologist and learning to hear again. It was busy and exciting.

Yet, as the holidays approached and Thanksgiving neared, I found myself feeling angry and sad. In my mind I knew I had a lot to be thankful for and I tried to concentrate on that, but sometimes feelings of sorrow and irritation would overwhelm me. I knew what it was; I was grieving for the loss of my hearing. I couldn’t understand how this could be. After all, I had done that several times before and I thought I was done with it.

When I was thirteen I was diagnosed with a slight hearing loss. Being a busy, happy teenager, I didn’t think much about it. At the age of eighteen, when tests showed my hearing loss was definitely progressive, I began to understand it was going to affect my life. I started telling people when I needed to, and I made choices according to the recommendations of my doctor, such as where I would work, but I don’t think I really believed the prognosis that I would be deaf by the age of fifty.

A few weeks before my twenty-first birthday, I married my husband, Paul. Eighteen months later, with our first child, a girl we named Sarah, we moved four hundred miles away from family and the city we grew up in. During the next five years we’d had two more daughters, Paula and Jana, and were settled into what I thought was a happy life. Then one day, the denial I had developed about my hearing loss confronted me. Maxine, a woman from my church, called Paul at work and asked him about my hearing. She said that it appeared I was not hearing the pastor when he spoke. She had a hearing problem at one time and knew a wonderful doctor that might be able to help. Paul told her that I had progressive hearing loss, but refused to go to the doctor because they always told me there was nothing they could do. Maxine persisted and told Paul to make the appointment for me and take me to see this doctor.

When Paul related this to me and said he had made an appointment, I thought “Fine, I was due for a check up anyway,” although I felt irritated by this intervention and I did not want to go. I told Paul I just didn’t want to hear the bad news again, “You are losing your hearing and there is nothing we can do.” But this doctor turned out to be different. He confirmed what every other doctor said, but he also suggested that I might want to try hearing aids and he sent me to work with an audiologist.

I received my first pair of hearing aids when I was twenty-eight, on the day before Thanksgiving in 1984. My parents were visiting and my mother and I shared tears of joy as I heard sounds I had not heard for years, such as the crunching of snow under our boots, or the whistling of the wind blowing in the chimney. I still needed to read lips, but there was improvement in my situation and I was thankful for that.

I also felt gratitude towards Maxine and thanked her in church one Sunday. Who knows how long I would have hidden behind my denial. She gave Paul and me the nudge we needed to start dealing with my hearing impairment. However, I also had to start dealing with my feelings about it.

After I had my hearing aids for a while, it became apparent how much I had been missing and I developed a new awareness of how it was affecting my children. In trying to get my attention, Jana, who was two at the time, had developed a high pitched screaming technique that I could not hear before hearing aids. Was she surprised the first week after I started wearing hearing aids when I swiftly put her in a “time out” for screaming. I was happy that the hearing aids helped, but I also felt more annoyed and frustrated with what was happening to me. I had not yet identified what I was feeling and being an optimistic person, I just did my best to move on.

My doctor recommended I have annual checkups and I tried to follow his advice. Every year I would make an appointment, my hearing would be tested and the result was always a little worse. I lost some of the high pitched sounds that hearing aids initially gave back to me. I couldn’t hear the phone ring so we added a louder ringer and because I had difficulty understanding speech, we also added a volume control so I could turn the sound way up on the phone. After five years I needed stronger hearing aids and my ability to deal with this positively was wearing down. Once again I had reached a point where I just couldn’t bear the repetition of this news. I began to procrastinate with my appointments and they stretched out to every eighteen months.

In 1992, while visiting with my friend, Barb, I happened to mention that I was due for another check up and was having a hard time motivating myself to get it done, as it was hard to hear that negative news again. She then asked me if I had grieved over the loss of my hearing. Barb explained further that she had read an article about how people that have lost a part of themselves, such as a limb in an accident or a breast to cancer, go through the grieving process over that loss. As we talked about it I realized that those were feelings I had experienced. However, because I assumed a person grieves for something or someone only once, I assured her that I had been there and done that. I figured I had already grieved – and I had.

Sadly I discovered that it is a process that can be repeated. After my next appointment, when once again I needed stronger hearing aids, I went through the anger and sadness all over again. Why me? I would ask myself. With time, I worked through the feelings until I could ask myself, – Why not me?

I finally told my doctor that I couldn’t go through the process every year. He responded that a check up every other year would be fine. We also discussed the possibility of the cochlear implant. I had been hearing wonderful things about it and I became hopeful that it might work for me. But my doctor wanted me to wait, as he believed anything natural would be better than what he believed was the unnatural sound of the implant. I supposed he was right and I also knew that the technology would continue to improve while I waited.

The stronger hearing aids helped for a while and eased my frustration for a few years. Then, in 1998, I decided that I was ready to know more about the implant and whether I was a candidate. By this time I had reached the point where I could not tell the difference between my daughters’ names on the phone. All I could hear were the vowel sounds which sounded the same for each one, “Ah, ah; Ah, ah; and Ah, ah.” I stopped answering the phone altogether and only talked on it with family.

When I looked into the cochlear implant I did some research on the internet and asked a hearing impaired acquaintance what she knew about it. I had the impression that the University of Iowa was on the cutting edge of this technology and arranged to be tested there. What I learned made me very hopeful, but I didn’t meet the criteria. I couldn’t believe it! I had less than twenty per cent hearing left in either ear and hearing aids did little to help me. How deaf did I have to be? I was angry at my situation and getting very tired of having to work so hard at communication. With no other choice, I went on and tried to follow the recommendation from the audiologist to wear my hearing aids with the volume turned up higher.

In the spring of 2001, I noticed that the ringing in my left ear was increasing. I would have moments when it was so loud I didn’t know if I could stand it and then it would suddenly quit. Deep down inside I knew that the little bit of hearing I had in that ear was leaving me. I tried to pretend that it wasn’t really happening, but the realities didn’t allow me to do this for long. I had stopped trying to listen to music because none of it sounded good. I quit attending church and other social functions because it was becoming almost impossible to follow the service or keep up with conversation. Reading lips took all of my concentration. I was tired of compensating. It was time to make a decision. If I didn’t qualify for the implant now, then my family and I would learn sign language.

I asked Paul to make an appointment with my doctor. The audiologist examined me first. It was during the testing that I knew for sure there was a big change. The audiologist did something that had never been done with me before. She brought in the pictures so I would have visual clues for the words she was saying. I wanted to cry. Instead, I took a deep breath and got through the test. When I finally saw my doctor, I really wasn’t surprised when he told me that I didn’t have any hearing left in my left ear and there was about fourteen per cent in my right. I made myself breathe and asked about the cochlear implant. My doctor said he didn’t do that surgery anymore, but he could give me some names. He agreed that it was time to look into it.

The Mayo Clinic is not far from where I live so I decided to start there. With a referral, I had my first appointment in July of 2001. After the tests that are required by the FDA, I was told that I met the criteria and was a good candidate for cochlear implant surgery. The surgery was scheduled for August.

Hallelujah, something could now be done. Oh God, I could hardly believe I’d become deaf. Sometimes my emotions were so conflicting, I felt sick to my stomach. A few people, who knew this was my hope, congratulated me for qualifying. That felt weird, and sometimes I just didn’t know what to say, “Thanks, I am deaf?” Getting to the other side of the surgery was looking good. I was anxious for it.

I was fortunate. The surgery to place the cochlear implant went well. My recovery was trouble free, and the day I was hooked up to the external processor was exciting. I heard high pitched tones I hadn’t heard in twenty years.

Some sounds were not as I remembered them, and some I didn’t understand or recognize. The first three days were the most confusing. My brain needed time to sort things out the same way damaged bodies recover in physical therapy, with repetition and practice. On the fourth day, some of the sounds started to make sense. Although people sounded like they were talking into a tin can, I started to recognize a word here and there without reading lips. Improvement continued through October and into November and friends and family started sounding more as I remembered them. I was learning to hear again, so it really was quite a surprise to me when I had trouble feeling happy; when all I could feel was anger because I had to wear this headpiece and sound processor; or this tremendous sadness because when I took it off at the end of the day I heard nothing at all. How could this be? I should have been happy. Medical technology found a way to give me back sound in my lifetime.

During the period of time I was feeling all this, I had an appointment with Julie, my audiologist. She has become a good friend and on that day, she was a good counselor. I told her about the emotions I was experiencing and she listened like the pro that she is. Then she told me just what I needed to hear. All those feelings are normal and just about all of her patients talk about their anger at one time or another.

At that session I started to feel better. With each new day after that, I left those feelings farther and farther behind me. Am I done grieving for the loss of my hearing? I hope so.

Now I am celebrating. I am no longer distraught by the thought that I will never hear my grandchildren when they come along. I can hear the little voices; I can talk to my family on the phone; I can hear my cat meow; I can hear the rain. In the morning, when I step out the door on my way to work and I hear the birds singing, I can hardly believe it. It has been a long time since I have known this kind of happiness. Sound is beautiful. Life is beautiful. There is joy.