Talking Hearing Loss

My initial Cochlear hearing experience is with a Cochlear Nucleus 6. There are different types of devices used for different types of hearing loss. Many of my experiences can bridge those differences but others might be unique to my type of device and hearing loss.

I had a progressive hearing loss due to scarlet fever when I was five. I went through the period of state-of-the-art transistor hearing aids. They were the size of a pack of cigarettes, carried in a pocket or a harness around my chest. A hard wired ear piece was a total annoyance to an active 6 year old. I then progressed to behind- the- ear models and later went to bi-lateral hearing aids as my hearing declined.

Just before my 30th birthday, I suddenly passed the threshold where hearing aids could no longer work. First the left ear, then the right, both within a few months of each other. I spent close to 35 years in total silence. Cochlear implants (CIs) were in their infancy. I was reluctant to lose the fidelity of music to these primitive devices. I was pretty good at lip-reading (whatever the heck THAT means) and luckily fax machines and TTYs were becoming more accessible so I was able to function to a fair degree in my business.

When you suffer sudden deafness, you quickly find out who your friends are. Many just melted away, unable or unwilling to cope with the new requirements of conversations. Casual conversations with strangers were painful and awkward.

After a bout of depression, and some counseling, isolation was something that I accepted. I turned to more outdoor sports in able to socialize because conversations were too difficult. I found outdoorsmen had two stock phrases, “Nice shot!” and “Big fish!” and the rest was a bunch of grunting.

Building my business and managing a few dozen employees was a struggle. Lip reading for hours at trade shows left me drained. I utilized every piece of technology I could find to assist. Fax machines were new and fairly expensive. I made every one of my business suppliers purchase one over quite a bit of grumbling. Telephone relay services were unknown. I relied on others to make every phone call for me. The internet wasn’t on the radar screen.

I was waiting for modern science to find a “cure” for deafness so I could enjoy both conversation and more importantly, the fidelity of music. I missed opera and knowing that the CI was not going to make it sound like I remembered it, I was very hesitant to move in that direction. I loved Sinatra and Pavarotti and I could not bear to hear them as anything mechanical in tone.

My guardian angel had another plan for me. A chance encounter with someone who was sporting a new style Cochlear Implant (CI) that was a single unit behind the ear. I pressed him for information and he gave me the contact name in Sarasota. He was wearing a Baha which is designed for a different type of deafness other than what I was dealing with but I had never seen one so small and in one unit.

Making an appointment with that doctor, I found I qualified candidate for a cochlear implant. Discussing the options with him, I decided to have a bi-lateral CI done, knowing the worst case scenario, I would be no worse off. Although CIs are usually done one at a time over the course months or a year. My deafness was so profound and for so many years, that plunging in over my head, seemed to be the better option. Cochlear was able to work out the details with my insurance carrier to obtain their agreement to cover it.

I attended a couple of Cochlear support meetings. I decided to use the company’s offerings because the support was exceptional. I felt that was very important. I did investigate the other companies offering CIs but the support and the size of Cochlear put them in my corner.

To be better informed, I read several books written by others who had gone through the process to have CIs done. Hear Again and Listening Closely by Arlene Romoff as well as Wired for Sound by Beverly Biderman were all helpful in knowing what to expect and they also reinforced my resolve.

There are also several You Tube videos online of people being ‘switched on’ and hearing for the first time. Because everyone’s experience with deafness and hearing for the first time or recovering their hearing, the ‘switched on’ experience is going to be different.

I was fearful of the surgery and delayed the implant date for several months to be sure I was not making a rash decision. My fears were groundless. Surgery was out-patient. I checked into the hospital at 5:30AM and was out by 3:30 that afternoon.

I was sporting two plastic ear muffs (which remained on for a couple of days). The discomfort was manageable. I only took a few Tylenol for three days. My only mistake was that by having a bi-lateral implant done, I did not have a comfortable side to sleep on. I should have planned better for that. I did sleep most of the first month in a recliner. That should not be an issue for anyone getting a single implant. There was a tenderness of the ears from the surgery. It was a numbness that lasted for about a month and a half but diminished with time to the point that one day I was no longer aware of it. There is no visible scar and I cannot feel the implant.

I also bought a medical alert tag to wear because once you have an implant, your ability to have an MRI is limited. It is just something to be aware of.

I had the surgery done December 8, 2015 and I was switched on January 8, 2016 just a few days shy of my 65th birthday. After thirty-five years of silence, my biggest concern was that the hearing function of my brain had atrophied so much it would not be able to interpret sound and I would be left in a world of beeps, tweaks and gibberish. I was hoping for the best but mentally prepared for the worse.

The actually “switch on” was very undramatic. I could not hear anything I would recognize except for the clicking of the turn signals in the car on the way home. Two days later I found myself in Disney World (Please, do NOT ask me WHY I was there) and a few sounds began to come through such as the beat of the music in the Tiki Birds pavilion and strangely enough, in the Hall of Presidents, I thought I could recognize some of the names of the Presidents as their robot figures stood to take a bow as their names were introduced.

Sound was very mechanical and rough at first. It was also loud. Your audiologist is going to become your new best friend. They are going to be the person you work with to get the best use from your CI. Because we are all different, the diagnostic tools and customized adjustments they make will be the focus.

Everyone’s hearing loss and recovery with a Cochlear or Baha is as individual as their fingerprints. We share certain commonalities but we also need to be aware of the differences.

When you are switched on, the audiologist is aiming to get the maximum volume you can tolerate. On the remote control I was told to increase the volume to the next level every two days. In the beginning, visits to the audiologist are every two week for the first month as they increase the volume and help with the sensitivity settings. Using programs from Cochlear they will make the adjustments. After the first month, there will be new settings on the remote that will help you deal with different hearing situations, such as an automatic scanning program that listens for the background noise and makes adjustments. There are other programs you control depending on your situation such as being in a restaurant or listening to music. These are programs that require practice but are very essential to get the most out of your CI. Visits to the audiologist then are spaced out at every two months and eventually perhaps once a year or when you have a problem.

I was aware that there would be weeks or months of rehabilitation involved in learning to hear again. As I have mentioned several times, everyone is different in their loss and recovery. I was prepared. I am told the speed of my recovery was very unique. That being said, I was grateful for the rapid progress. Patience is the watchword as there is no way to predict how well an individual will do. It took a few weeks to be able to distinguish between male and female voices. Everyone seemed to sound like Donald Duck or Alvin the Chipmunk.It was a treat to hear my son for the first time as I lost my hearing when he was three years old. At first his voice was indistinguishable and mechanical but within a few weeks I would know his voice anywhere.

Using materials from the library, lectures on DVDs, audio books on CD and Kindle books with text to speech, I found myself recovering comprehension quickly. I was so intent on recovery, I probably overdid it and I stayed home the first month after being switched on as I wanted to listen to everything and all the time. I listened to college lectures from a company called The Learning Company. Most public libraries have a selection.

I could lip read the professors while listening to them speak (the courses are not closed captioned) it was a great way to practice listening. I took out courses, such as the history of Mesopotamia (something I knew nothing about to be certain I would have to pay close attention). I found after a few hours, I could follow the lecturer with 100% comprehension. Soon after, I sat across the room so I could not lip read and I found that I was getting full comprehension in a couple of hours. My brain was adapting just fine.

Driving with my wife or another passenger meant I was always dangerously turning my head to lip read. I no longer had to do that as I could understand without lip reading anymore. On the other hand, after 40 years of marriage (35 of those being deaf) I could no longer avoid her summons…..LOL.

I was told using a phone might be six months down the road but throwing caution to the wind, I was able to make my first phone call within three weeks of being switched on. My first real phone conversations in 35 years. My sister and I spoke for about twenty minutes and I only asked her to repeat twice.

Eating in a restaurant with a group of friends, no longer means sitting there in isolation, unable to follow the conversation in a group. With the settings on the Cochlear remote control of the CI, normal engagement with a group is possible. Adjustments are easy and inconspicuous. There are several accessory devices that can assist in many situations. Attending lectures where there is a hearing loop means the speaker sounds like they are right next to me wherever I am in the auditorium. I attended a series of lectures within a month of being ‘switched on’ and I did not miss a word. I even took a course at a local college to see how well I could function in a class room. It was fantastic.

Casual conversations with strangers no longer need to be prefaced with “Excuse me, I am deaf, turn towards me so I can read your lips.” A real conversation killer. That problem is over.

Music was the hardest. The CI is designed for speech. Music is very complex. Performers I remember from decades ago in my ‘ear worm’ no longer sound like I remember them. Elvis was not Elvis. Sinatra was not Sinatra. Pavarotti was not Pavarotti. It look several months of listening until they began to sound like I remember them. They are still not 100%. I will take 95% over zero any day.

The brain is a remarkable organ. The more complex the music, the more time it takes for the brain to learn again. Every day it sounds better.

I spent a lot of time listening to talk radio as I remember how foreign-born cab drivers in New York were always listening to talk radio to improve their English language skills. It worked for me too.

I listen to a lot of classical music FM radio and it is sounding more natural all the time. WSMR-FM is available on internet radio. Paired up to your CI via the Phone Clip or the Mini Mic +2 is the best way to listen as the sound goes directly to your processor.

Rock and roll was the easiest to adjust to as it is mostly the beat that is recognizable. It does take work but I was not discouraged. The You Tube videos often have captions with the songs. It is a great way to begin to get your brain to pair with the music.

My world has opened up with new friends and new sounds. I have begun to recognize bird songs that I never heard even when I wore hearing aids. I can distinguish a cardinal from a pileated woodpecker.

I can now overhear conversations. I always thought the inability to do that was one of the worst aspects of deafness.

I knew I had reached a new peak when I found myself walking about the house at 3AM with a precision oil pen, working on the door hinges that seemed to squeak so loudly.

These were all happy problems.

Cochlear’s support has been exceptional. They never made any promises before I made the decision to go ahead with the implants. They can promise nothing about the future but they have been with me every step of the way with any questions or concerns I have. The process and the results have been far better than I could have hoped.

Do I regret I did not do it sooner? Yes, of course, I do but I am grateful for the opportunity to enjoy life to the fullest again.

In the summer of 2016, several months after I was activated with Nucleus 6s, Cochlear introduced the Kanso processor. It is an all in one package that is an off the ear processor. I did have an opportunity to try it out in February 2017 at a Cochlear Celebration convention. It was an excellent device. It has the same fidelity as the N6 but I decided not to change as a matter of my lifestyle choice because they are wider and would not fit under my motorcycle helmet. For anyone considering the Kanso, you won’t be making the wrong decision, it is just a personal one.

In October 2017 I upgraded to two Nucleus 7s. They are a quantum leap because they receive signals directly from an iPhone, eliminating the need to have a Phone Clip serve as an intermediary device between a cell phone and the processor. The sound is much more robust.

I am happy to help others in any way that I can with any questions I can answer or help find the answer to. I know when I first started to investigate getting a CI, I did not even know what questions to ask so don’t be shy about contacting me or anyone at Cochlear if something you did not think to ask at first comes to mind. You will probably have plenty of questions as you investigate further.

I know there is no guarantee of success as there are no guarantees to anything in life, but I think it was worth the leap of faith to have the CI done.

Richard Pocker lives in Osprey, Florida. He uses bilateral Cochlear Nucleus 7 Processors. Richard also runs Cochlear Basics and has mentored or assisted over 400 cochlear candidates and recipients over the last three years