Practice, Patience, & Perseverance - Getting a CI Is Only the Beginning

Wed, 22 Sep 2021 by Julie Husting

I remember clearly the day my hearing aid audiologist suggested that I look into getting a cochlear implant. To say I was taken aback would be putting it mildly. I was hearing just fine with my hearing aids, as I had for thirty years. That was in 2012. 


Hearing versus understanding

I now know that there is a big difference between hearing and understanding. Hearing aids make speech louder. Cochlear Implants make speech clearer. It turns out I was hearing with my eyes and not my ears. I could hear just fine as long as I could see lips and read facial cues. Once the lights were off or if someone looked away, it was a different story. All of a sudden, I couldn’t really hear anything. 

I had a big pity party for myself. I realized there were a lot of things I had simply accepted that I would no longer be able to do. I wasn’t going to be able to talk on the phone normally. My ability to listen to music was rapidly diminishing. Forget trying to communicate with multiple people in the car. I was going to be reading lips forever. My list went on and on. My audiologist introduced me to a man who had cochlear implants, and that changed my entire life. I realized that maybe I could do all of those things again!

I read everything I could about cochlear implants, including the surgery, activation (when the device gets turned on), what it was going to sound like afterwards, and what I should do to get the most out of my cochlear implant. I learned that it was not going to be a “quick fix” like getting glasses or regular hearing aids. Rather, it was going to be a process, and I would have to put in the work in order to be successful with my new “ears.”  


It takes practice

One of the most important things I found out was that aural rehab would make a big difference in what I would be hearing. A cochlear implant is a foreign device in our body, and our brain has to figure out what it is and how to use it. It’s no different than if you get a knee implant, or if you break your dominant hand and have to learn how to use the other hand for everything. You don’t go on a marathon right after getting a knee implant, and you won’t write fluently or feed yourself easily using your non-dominant hand. But with lots of practice, you can walk normally and you can write with both hands easily. The key words are with lots of practice. 

A cochlear implant is a foreign device in our body and our brain has to figure out what it is and how to use it.

I also learned that the first goal should be to understand speech clearly. Then I could move on to loftier goals like talking on the phone and listening to music. If you can’t understand speech clearly, without reading lips, then listening to the phone without captions will be impossible. Voices typically sound strange in the beginning and to expect to hear music perfectly simply isn’t realistic. But rehab can help.  


Get others involved

I was in the car with my parents on the way home from my CI activation. I wanted to see what I could understand. My dad had Alzheimer’s, and it was difficult to have a conversation with him. Instead, I had him say a word from a sign that we both could see. To my amazement, I could hear the word that he spoke to me. Keep in mind that I was sitting in front of him in the car and couldn’t see his lips. He also sounded like a five-year-old girl that day. Yes, voices sound very different in the beginning!  

It turns out my “sign game” became a great form of rehab. I played this in the car regularly. I also had my dad pick out words from newspaper or magazine ads. As a mentor, I have gone to multiple activations. I have played the sign game with each person right after their activation, and, sure enough, each person has been able to find the words I have spoken without looking at my lips. It’s incredible!

I was fortunate to have my parents help me with my rehab. I made up categories of words like flowers, family names, animals, holidays, etc. I had them tell me the category. Then, they gave me the words in random order that I would repeat back to them.  Of course, all of this was done without looking at them (no reading lips)!  

I found that my family wanted to help me and we celebrated my progress together.  My parents are gone now, but I was so grateful that they were able to see the change in my hearing after so many years of struggle. 


Have patience

I also did some of the work on my own using various apps and websites. On the HearingSuccess.com portal, I particularly like SoundSuccess. It’s important to be able to read along with what you are listening to. It also helps to hear different voices. With that module, you are able to do just that and you can also see the person speaking. In the beginning, I watched and read along. As I got better, I looked away and just listened. 

Visit

HearingSuccess rehabilitation portal

It is important to do all rehab using only the implanted ear. I did this by removing the hearing aid from my other ear. The brain tends to use what it is used to and will use the better hearing ear before it will use the implanted ear. Think about using your dominant hand—you don’t say “I think I’ll pick up this fork with my right hand today.” It just does it because that’s what’s easiest. But if you tie down your right hand and force your brain to use your left hand, it can do it. It will be awkward, but with practice, it can do it. 

People often ask me how long it takes to understand well with a cochlear implant. It’s important not to compare yourself to others. I worked very hard on mine. I treated rehab as if it was a class I was taking—the most important class I’ve ever taken! I worked on rehab exercises for an hour a day—that’s “active” listening. I also filled more of my day with “passive” listening. That is where I immersed myself in sound. I took walks outside and listened to what I was hearing. I had the TV playing in the background. I went out to lunch with friends. I worked and talked to my co-workers. If you only do an hour of rehab and live in a quiet house the rest of the day, it is going to take a very long time.  

I treated rehab as if it was a class I was taking—the most important class I’ve ever taken! 

Here are some of the free online resources that I have found invaluable during my rehab efforts. I hope you will, too. 

  • The Hearing Journey forum is an online community of people living with cochlear implants. I found it to be a goldmine of information.
  • HearingSuccess.com is like a digital library full of activities that you can use for hearing practice. Besides the SoundSuccess mentioned earlier, the Musical Atmospheres module was fantastic for identifying different instruments that I was listening to. There is even a goal sheet that you can print out and fill in on there. 

Visit

HearingJourney Online Forum
  • If you need more ideas of activities like my “sign game,” sign up for TheListeningRoom.com and go to Listening Practice at Home. It is full of ideas for activities to practice!
  • A great app to try is WordSuccess.  It’s available for both Apple and Android, and is it’s designed to help you understand words and phrases in quiet and noise. It even has a placement test to help you figure out where to start.

Visit

TheListeningRoom Rehabilitative Website

Perseverance pays off

I liked my first CI so much that I wound up getting my second one six months later. My cochlear implants gave me great speech recognition. I can talk on the phone easily. Music sounds the way I remember it. It took several years for that to happen, but it did. I can do all of the things I never thought I’d be able to do again, but it took the three Ps: Practice (Do the rehab.), Patience (It’s a marathon, not a sprint.), and Perseverance (Never give up!) in order to get there. Boy, was it worth it!


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