My CI and Me: A Work in Progress

By Lynne Kinsey

 

I got a cochlear implant in October 2013.

Remarkably, I am hearing things I haven’t heard in almost 25 years: birds, leaves crunching beneath my feet, leaf blowers, traffic noises, the furnace, dishwasher and refrigerator noises, children playing and babies cooing, some music and instruments – even my computer keys as I’m typing this. Many of these sounds were non-existent to me, even with my hearing aid, so now with my CI, I often do not recognize a new-to-me sound.  I recently called my husband, Stephen, to the kitchen to help identify a strange noise, only to find out he had started the dishwasher.

Unfortunately, it is taking longer than I’d hoped to retrain my brain to understand speech. Recently, while visiting with my daughter and her family, I wasn’t always able to understand my 6- and 3-year-old grandchildren. Sammie, the older one, realizes this and tries to help me by standing with her face right up to mine, practically touching, making it impossible for me to see her exaggerated lip movements. I’ve tried explaining what would work better, but she is lovingly convinced that this is what she should do.

How could I not love such an effort?

My cochlear implant sends electrical signals directly to my brain, bypassing the parts of my ear that do not work. My brain has to re-learn how to interpret the signals. Some voices are easier for me to hear and understand, but it takes a lot of concentration and is very tiring.  I can only concentrate on one voice at a time, so with cross talk and multiple conversations, I get lost. I understand one or none. Hearing in background noise is harder than before the CI, but I’m told that this will get better.

I started seeing an aural habilitationist in January to help me focus on the sounds I need to practice.  The therapist emphasized that this is not re-habilitation because adjusting to a cochlear implant is different from re-training my “ear” to listen and hear.  Some people who have been implanted hear things almost immediately, but I have also met people for whom it takes weeks, months, or years.  Yet all of them say they would do it again in a minute, and many have been implanted in the other ear. Right now, I am terribly envious of those who hear well with their CIs, but I realize it takes time and practice.

My husband and I do listening exercises at home to re-train my brain. Stephen can be a noodge about doing them, but he is more disciplined at making regular time for them, and I know he is right and love that he is willing to do them with me. The exercises are boring and repetitive, so I empathize with children who have speech, hearing, or vision difficulties or seniors recovering from strokes going through repetitive therapy to regain some level of functioning. There are other computer exercises that I can do alone, but they are not as good, or as much fun, as doing them with Stephen.

Because I am used to not hearing things, I forget that I am improving. My hearing is much better than before my surgery and has improved steadily since the CI was first activated last November. Only six months have gone by since activation and I have to be patient.  And I need people to be patient with me, because I may have to ask for something to be repeated once, twice, or even three times. It’s frustrating for everyone, and it’s often very difficult for me to even ask for repeats. It would help if people could check in occasionally to see if I’m following them so that I don’t have to do the asking all the time.

Hearing loss is an invisible disability and even I sometimes forget that I am not hearing things. I still rely heavily on lip reading, together with what I hear, and need to see faces to understand what’s being said. However, this is happening less – sometimes I understand people even when I am not looking at them directly, a novelty for me. Yet, I continue to ask people to keep their mouth clear of hands and other items (apart from eating utensils) when talking. Even Stephen is guilty of covering his mouth and I often physically remove his hand from his face; he finds this annoying but it’s easier than interrupting his conversation.

Even in the seven months since my surgery there have been new advances in cochlear implants.  When asked if I wish I’d waited longer, the answer is NO!  There will always be new things available and even newer things in development. At the time, I chose the best product for me, but I will continue to follow and learn about new advancements. Who knows what will be available in the future? One company has a new device that is completely implantable with no external hardware, whereas I still struggle with becoming tangled in my listening device cords.

I am truly a bionic being with my cochlear implant, cranial shunt, and heart pacemaker – and I’m eternally grateful to live in a time when such devices are available and that I have doctors who are knowledgeable in implanting and using them.

I expect my communication to get better and better – because I am still a work in progress.

 

Lynne KinseyLynne Kinsey is a former Satellite Data Analyst who now focuses on her family and community work, especially with the California State Association and Silicon Valley Chapter of the Hearing Loss Association of America.  After living with a progressive hearing loss for 22 years,  Lynne was implanted in October 2013 and is happy to talk to anyone who wants to know more about living with a cochlear implant.

About Gael Hannan

Gael Hannan is a writer, speaker and advocate on hearing loss issues. In addition to her weekly blog for HearingHealthMatters.org, which has an international following, Gael wrote the acclaimed book "The Way I Hear It: A Life with Hearing Loss". She is regularly invited to present her uniquely humorous and insightful work to appreciative audiences around the world. Gael has received many awards for her work, which includes advocacy for a more inclusive society for people with hearing loss. She lives with her husband on Vancouver Island, British Columbia, Canada.

8 Comments

  1. Lynne, I can relate to your situation completely. I have progressive hearing loss and was implanted on my worse ear in Spring 2010, before the sound in my other ear deteriorated. It has enabled me to enjoy music again (although some people do not have that benefit) and to enjoy talking to my grown-up children in the car as I have acted as Dad’s taxi! It has also enabled me to function adequately in the work situation on many social occasions. It is far superior to the hearing aids I used, which ceased to be useful as my ears deteriorated. Enjoy the journey!

  2. Thanks for your honest feet back. I know it will get better and better – Just have to continue brushing off those old cob
    webs in your brain as your brain continually re-learns what you haven’t heard in so long. Plus you have a great attitude. I know this because I was lucky enough to meet you when you were in NJ.

  3. Your story was so enlightening and encouraging to me. I was implanted on one side 18 months ago. I lost my hearing quickly over 3-1/2 years, so my brain remembered lots of sounds. I’m 71 and had normal hearing until then. But, I’m impatient and want everything to be perfect. After reading your account, I’m determined to slow down, pay attention to what I can hear, remember what it was like before implantation, and be grateful that my little granddaughters can now tell me their secrets! If I don’t always recognize a sound,that’s okay. I trust that will come in time. Indeed, we live in marvelous times.

  4. With reference to cochlear implants,this statement is absolutely incorrect: “One company has a new device that is completely implantable with no external hardware”

    1. There may be a confusion with Med-el company, which makes cochlear implants, Electric-Acoustic Stimulation devices, and the Soundbridge Middle Ear Implant System. According to a recent Canadian Hard of Hearing Association presentation by Med-el, you CAN have a new hearing-assist device that is completely implantable with no external hardware.

  5. Dear Lynne–
    Thank you sharing your story and being so honest about the challenges! The decision about whether to move ahead with such life-changing technology is huge. Some of the things you mention remind me of when I first got my hearing aids (20+ years ago.) I can still remember what an explosion of noise it was to flush the toilet in a tiled bathroom stall!

    What I really appreciate about your article, though, is the description of your husband and grandchildren who are helping you in your “habilitation.” Their support and encouragement is heartening. Please keep us posted on your progress!

  6. Hang in there, I’ve had my implant for 28 years. It gets better and better as time goes on, try listening to music that you are familiar with. If you know the words to a song, try hearing them and following along.

  7. Hang in there Lynne and keep doing the work. I just had my 3 year follow up visit and I actually made improvements in my hearing with my cochlear implant between my second and third year! It really is an ongoing process.

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