HEARING LOSS ANECDOTES

Each issue of the SWC Newsletter is devoted to anecdotes by SWCers, actual experiences or reflections on facing the challenge of hearing loss. (Editor)

Living Life with a Cochlear Implant

This is an entry I made in my CI diary today. I am now eight months post hookup with a N24 C implant in my deaf left ear which has heard no speech in any form in over ten years, with deafness beginning as a teenager. I wear a hearing aid in my other ear, which also is profoundly deaf but still gives me minimal speech comprehension (3 out of 105 words in quietness without lipreading.) Today I had to sit for two and a half hours during car servicing. I was in my usual non-conversational reading mode (only now listening with headphones to book on tape.) This means I avoided eye contact with others and did not initiate any conversations. Occasionally I tried to listen to the TV (up toward the ceiling in the corner about 12 feet away from me), not closed-captioned. Once in awhile I could understand a word, mostly while lip reading along. After a while a woman sitting across from me began conversing. The TV noise was quite loud and she kept covering her mouth with her fingers. I successfully had a nice conversation with this lady on diverse topics. I could not catch everything she said, but I followed it well enough to respond appropriately or at least not noticeably inappropriately, judging from her facial expressions. I did not tell her of my deafness. It felt really good being able to talk with a stranger like this with much less straining and “faking” compared to pre-CI days. I have avoided this type of conversation as much as possible for quite some time. Pre CI I would have indicated I was not a willing conversationalist by a brief response (hoping I understood what had been said) then lack of eye contact. Or I would have told her that I was deaf and that probably would have ended the conversation. Or, if she pursued, mentioning and believing in my lip reading abilities, she would have tried to converse with me until I made obvious or repeated inappropriate responses (due to inability to follow the conversation) at which time she would have given me a puzzled look then looked away avoiding further conversation and eye contact with me. I would have resumed reading my book. If others were in the room I would have politely ignored their stares. Bottom line, my CI is allowing me to resume some activities that “normal” people take for granted. Deafness is no picnic.

Andrea Grohman

One thing that stands out in my mind was when I was first hooked up the first week, I was driving in the car, and I heard a clicking sound and I was panicking cause I didn’t know what the sound was, well, I turned the corner and it stopped… and I said "Oh my God that was the turn signal" and I started to cry… First time I had heard that in 20 years or so. Another moment that also stands out happened a few weeks ago when I was visiting my friend in Maryland and we had the radio on and well, he knew I knew the song and looked to see if I was hearing the song on the radio and well, I realized it sounded familiar and lo and behold, it was a song that was played at my Sweet Sixteen and I was able to hear it and sing along with it. The song was Stairway to Heaven… Yep, I’m in heaven now with the CI - on Cloud Nine.

Linda Stock

I started to lose my hearing at age 15. It was slow progressive. By age 43 I was legally deaf, and had to give up my career in social work, as I could no longer hear. I chose to get an implant so I could learn to hear again and resume my career in social work. I was implanted with the Nucleus 22 in 9/96 (it was my only choice at my center, no other brands were offered). I had many, many mappings and spent hours having aural rehab at my center and doing self-rehab, but could not hear well with the N22. The best I ever got was high-pitched gargly cartoony sounds. The N22 only had one strategy to choose from, SPEAK,and I guess SPEAK didn't work for me. I was told when I was implanted that any future improvement that the company came out with would be applied to my implant, but then a year later the Nucleus 24 came out, and I was told no, I can't have that, I will always be limited by my N22 electrode, to the one strategy. So, after 3 years of trying, I decided to try to get my other ear implanted.

I spent one year building a case for approval for surgery on the other ear. Finally my surgeon agreed to it, as my audiologist was advocating strongly for me with him and I was given a choice of Nucleus 24 or Clarion. Many people told me "since you have a Nucleus on the right, you should get a Nucleus on the left". I felt the opposite, the Nucleus on the right had not helped me, and the company was not able to make it help me, so I felt somewhat betrayed and this time I chose the Clarion. I was implanted with the Clarion CII on 4/20/01, hooked up on 5/15/01.

It has been an upward progression ever since. I am now using the phone, attending movies, can hear at meetings and in church, and am now on the Board of Directors of the local "Access to Independence" center, am an officer in the local cochlear implant group, and have finally been able to return to my career of social work. I am now working as a caseworker in adult protective services/long term care. I am on the phone many times a day, making and receiving calls, using regular voice phone, my Clarion CII BTE with t-mic.

An Uncomfortable Hearing Loss Experience

Ronnie Williams

Most of my adult life I have to say that I've been very comfortable about my hearing loss, and all the things that go with it. This is usually due to the fact that I try to put myself in the position so that I can handle most things. Like with business, social, and so forth. Last week something happened to me, that put me in a tailspin of being out of control, and has left me so shaking up, I don't know if I will ever come out of this. This experience left me feeling helpless, hopeless, and unsure of myself, today. I was walking on the beach with my 3-year old nephew, and we were walking in the water that was about 6" deep. We had been walking side by side and a wave came in and I ran out to get away from it, and thinking that my nephew was beside me. In a second I realized that he wasn't on the beach with me, and suddenly, a lifeguard and several other people were running past me, for they heard my child screaming for help, and I couldn't hear him nor see him. The lifeguard went behind some rocks that were close to the beach, and pulled my nephew off the rocks on the other side. The wave caught him and then threw him on the other side of the rocks. He was fine except for some minor cuts. The thought hit me that I could have lost him, if there wasn't anyone else around. I became so afraid after we got home, I couldn't sit still. I do know that the tears that flowed from this event, has shaken my entire being. There is nothing that anyone can say or do that would help me at this point. Hopefully, one day I will see the light at the end of the tunnel, and realize it's not a train coming towards me. Thanks for allowing me to share this.

Assistive Devices and Communication Tools

By Shirley Piel

I bought a Sonic Boom alarm clock! It's the new white model and of course, it has the bed shaker. It was a simple, online purchase delivered to my pod at work. When it arrived I eagerly extracted it from the box, set it up, and tried it out. My co-workers were fascinated by this gadget, exclaiming they had never heard of such a thing! (Engineers! Sheesh!). We watched the vibrator dance on my counter and laughed when changing the tone of the LOUD BEEP. The sound attracted more people to see what the heck was going on in Shirley's pod and they, too, were fascinated by my new toy.

Why did I buy this expensive clock? It's because Philip woke me up one morning by huffily flopping over in bed. I couldn't figure out why he was like that until it dawned on me that the alarm clock was going off but I didn't hear it. He doesn't have to get up at any specific time for work but I do, hence the clock is mine and on my side of the bed.

The new clock went home with me that day, and when Philip saw it he asked, "What did you buy?" "It's a new alarm clock," I said, and then told him of the features I was looking for, such as buttons that are on my side of the bed (no reaching to the opposite side to stop the alarm), a dimmed read out in the dark, the sleekness and color, etc. He wasn't informed about the vibrator.

I set up the clock right away, and placed the vibrator underneath my pillow. Would he notice this the next morning? There was only one way to tell.

The next morning, I woke up not only to my pillow vibrating, but Philip sitting up and mumbling, "What the HELL was that??!!" Hehehe! I said, "It was the clock. Go back to sleep", and he promptly went back to his peaceful snoozing.

The only difference between the new clock and old one is the mode of waking up...vibration versus sound. He briefly woke up to sound before going back to sleep. Now he wakes up to vibrations.

He has learned to live with this new clock. Otherwise he will have to wake me up every morning, and that isn't something he wants to do!

But you know, when it comes to communication, it appears that doing some simple things for me isn't what he wants to do either. Some of those things are facing me when speaking, getting my attention before launching off onto a spiel about density-altitude (he was a Vietnam era pilot) or any other subject, expecting me to understand him from the other room, and the list goes on. You all know and are familiar with all of this on the list.

Communication is fine with him. A few repeats never bother him and he hasn't dared to ever say "It doesn't matter" but he did make my fur stand up when he said, "Didn't you hear him?"

That remark came after his son said something outside, about thirty feet from us and the sun was in my eyes. My chances of understanding him were on par with a snowball's chance of survival in hell.

I let him know that I did NOT hear what he said and let it go at that.

Philip knows I want to learn sign, and have learned some on my own but now I am taking a sign class at the local community college. He understands my seriousness to learn but doesn't see any importance of him learning.

He won't learn until he is interested, and right now he has zero interest. After all, communication comes easily to him, so why bother? It helps HIM that I have enough hearing to understand half of what he says, guessing at the rest to get the entire story. However, this sometimes leads to arguments because of misunderstandings of what he said.

The argument never ends with an agreement to be more careful when communicating. It just stops when I get exasperated with him staunchly opposing any effort on his part to step up his efforts to communicate.

This may worsen to the point where we don't communicate at all but that is a bit extreme. No, what he sees happening in the future is note writing - A LOT of note writing. I don't know how he can honestly think that writing down, "She is uglier than a fried cockroach" will be any easier than signing.

But I do know this...

He is self-conscious. When we first began dating, he was quite self-conscious of stares from other people, especially the outright cold glares from women his age. Hey, the man is 17 years older than me and sports gray hair. Many people assume he is my dad! After a while, he began relaxing and doesn't notice the stares.

We know that people stare at signers. They are curious and like to watch. If he signed to me in public, he would attract unwanted attention. It would take even longer for him to be comfortable with this that he did with the stares. Not only would we receive stares from women his age, but from everyone. He just is not ready for that scenario.

So, I realize that patience and understanding are important. He cannot be pushed to learn what I desire to learn as a communication tool. It will help me at work during interpreted meetings and when talking to my Deaf colleagues. Eventually, Philip will learn some signs and afterwards, be comfortable with signing in public.

Knowing him and his comfort level is essential if this communication mode is to work for us. In the meantime, I'll cherish his hand written notes.

Other Sides of Hearing Loss

Theresa L. Thrasher said, “Frustration, rudeness, isolation, planning ahead and hard work are facets of hearing loss. The phrase "never mind" or "it’s not important" crop up much more than we hard of hearing care to hear. We must watch lips, facial expressions and body language. We plan strategies for certain situations and, always, we cope. It’s tiring. People forget our needs and we are constantly in the position of asking for what we need and teaching about hearing loss. Often the people we are trying to teach aren’t interested. They just want us to go away. Some people try to take advantage of us or they make fun of us. If offered perfect hearing, most of us who lost our hearing after being in the hearing world and are struggling to remain in the world we know wouldn’t think twice. Or would we? We might want the convenience of being able to hear but would not want to give up the things we have gained.

What could possibly be gained from hearing loss? I asked the people on the Friends list of SWC and I asked people in my local chapter of SHHH at our January, 2003 meeting. I wasn’t surprised at much of what was said while other things touched me deeply.

Compassion was at the head of the list at the SHHH meeting. Coping with hearing loss and late deafness can be an awakening. As bothersome, frustrating, isolating and depressing as hearing loss can be, it can make you aware of the variety of disabilities in the world. Your struggles can help you acknowledge how difficult the way must be for others.”

Judy Siciliano said, “One of the other positives would be that I am very much aware of and feel great empathy for others with disabilities or anything about them that would make them feel they do not quite fit in with the general public. My heart goes out to all of them and I try to help them if I can. It could even be that they are poor or they have been badly burned or have a birth defect or an illness, no matter, I can feel their pain so I would say this is one of the strongest positives for me."

People of the SHHH Chapter mentioned friendships gained. We are a small chapter and know each other well. We are proud of each other and support each other. We have an instinctive understanding that friends and family members without hearing loss don’t have so we are a sounding board, a safe place to vent, someone who understands and we share a common desire for more knowledge. I see that same thing over and over on the Friends list of SWC. Courage and acceptance are other gifts of hearing loss. The following are excerpts posted to a SWC member by other members in an effort to be of help. (Editor)

Asa Backlund said, "I got very depressed and I did find my situation almost impossible to cope with. But then I could no longer fall down. I was down in the pit as much as you can get and I actually found some relief knowing that my hearing wouldn’t be any worse - it couldn’t get any worse, so I found SWC and managed to bit by bit crawl up from that hole.

I did become a much happier person after I found SWC and after I had accepted that the new me was DEAF - that I could no longer do what I had done with ease before others had to accept it. When I became nicer to myself and stopped punishing myself for not being the same person I was when I had hearing, I also became happier with life and myself.

Hearing loss does change us - all experience changes us. SWC has given me so much more than what I had - so much more knowledge and power. I do not fret small stuff any longer. I was an extremely extroverted person and my mouth and hearing was a huge part of what I was and I loved talking, discussing, hearing others talk, listening to music, then I had to change. It is hard to change but we have to accept what happens to us and do the best we can about it.

Talk about it with those you feel you can talk to – vent, be angry, be sad, be depressed, and then accept it and move on.” These are words from a courageous woman. Hearing loss sometimes forces courage on us. Courage can be as small as continuing to walk your city or neighborhood streets without being able to hear anything or anyone behind you. Courage can be as simple as going on with your life through the obstacles hearing loss provides. Courage can be making the effort to make changes. Courage can be as large as making a decision to have surgery to have a cochlear implant, knowing you will have to learn to hear again with no guarantee of success or as large as making the decision not to have an implant, knowing you must learn to cope with hearing loss in other ways. Just as there is no right or wrong way to handle hearing loss, there is courage in any way you choose to live your life with hearing loss.

I found examples of acceptance, courage, compassion and friendship all involving hearing loss. And there was more. There was adaptation, flexibility and determination. (Editor)

Judy Siciliano said, "Living through this disability over the many years that I have had it has taught me many things about myself that maybe I would not have learned if I had normal hearing. Being deaf had impact on my social life, as it has on many of the others. And not being able to interact with people in the way that I would normally do has left me with no alternative but to spend more time with my own company, meaning just me. I learned to amuse myself with things I enjoy doing that maybe otherwise I would not have the time to do if I was out socializing all the time; reading, writing, crafts, photography, painting, creating hairstyles, garage sales, etc. Another one would be taking notice of everything and tuning into all that is going on around me. I see and notice everything. Among the things that are a part of noticing everything is seeing the world and nature in its full glory. Oh, how I love nature. I "notice" the color of the sky and the shape of the clouds, the trees how they sway in the wind, the shape of the flowers, the birds and how they fly, the ocean’s anger in a storm, a beautiful sunrise, etc. So even though I do miss terribly the companionship of others, there are many positives to being with myself. I am not quite so lonely when I amuse myself with the things I enjoy. If I were not deaf would I feel the same? I honestly don’t know. Maybe."

Another way of coping is to build your determination and skills. (Editor)

Mary J. Seymour said, "I have never given up on my social life because of my hearing. Yes it is hard at times, but I can always find someone to talk to at all gatherings. I let everyone know what I need. Sometimes they forget, but that’s ok. You know, sometimes I can understand what is being said better than hearing people because I’m a pretty good lip reader." "I’m pretty comfortable with my hearing loss."

Lassell Comegys said, "I live alone and I must confess I enjoy being alone. I love the computer and play bridge which is great. I read, knit, write, cook and participate in being neighborly when I need to be. Life can be very kind."

Many of us find ways. Always, they are our own ways. We learn from each other but we are individuals. Hearing loss doesn’t change that and though we can help each other, ultimately each individual finds his or her own way and I’d like to think we gain acceptance of our loss and continue to respect ourselves and realize our hearing loss doesn’t mean we aren’t worthy of respect. I like to think I’m a much stronger person having lived with a severe hearing loss than I would have been without it. It has certainly helped me discover my strength. I like to think I have gained in self-respect from dealing with it. (Editor)

Asa Backlund said, "Demand that people treat you with respect, respect yourself as you are and others will respect you back. Be nice to yourself and do not think less of yourself because your hearing is going down."

Judy Siciliano said, "My faith in God has grown deeper and deeper over the years. I turn to Him as my Comforter when I am depressed over this disability." "But if I did get my hearing back through some miracle I would not want to become someone other than who I am now."

I would like to add that hearing loss has taught me to laugh at myself. A sense of humor is sometimes better than the best Assistive Listening Device and it is an essential for those of us dealing with hearing loss. Otherwise, we can so easily lose our perspective.

Mary J. Seymour said, "Oh one of the best things is I sleep in total silence and can’t hear my husband snore." I make games with my grandchildren about what I thought they said. But, Lassell Comegys put it best when she wrote, "One must be able to laugh, and chiefly at one’s self. That is the secret of success."

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