30th entry ~ December 28, 2023

The day didn't start out so great.

1. I still can't hear with my implant device; that's a work in progress.
2. The hearing aid for my other ear quit working this morning.
3. I decided to switch the ear mold to the other hearing aid, only to discover it was not in the case where I thought it was. Then, I came to the realization that when I tossed the old drying jar into the trash, I also tossed that hearing aid. So now I have no back-up hearing aid. There is a replacement clause in the warranty, but I don't know if there may be a one-year limit; if so, then I'm SOL.
4. My clinic is closed until January 2nd.
5. Once again, I find myself "deaf in one ear and can't hear out of the other."
6. I hate this.

29th entry ~ December 13, 2023

Even God declared a day of rest.

I've been sick for three days. It first hit me Monday morning and got gradually worse over the course of the afternoon. I was quite miserable all night Monday night and was concerned that I'd probably miss my one-week post-activation appointment Tuesday morning. Sure enough, I wasn't able to make that appointment. I called them and asked to reschedule the appointment and was told that activation sessions are already booked into late February!

They offered me an 8:00 a.m. one week from today. But at age 74, I am not willing to put myself through rush hour traffic from Norman OK to the far northwest side of Oklahoma City. 

I already had an appointment scheduled with them on January 9th, which was four weeks after the canceled appointment. And, yes, that's the soonest I could get in, barring any cancellations between now and then.

At any rate, I'm in day three of being ill - though I'm not coughing nearly as much today as I did the previous two days - and I am weary of hearing the incessant 'digital white noise' beeping from the implant. So, today I declared a day of rest for myself. The processor has remained in the drying case all day. I've had my hearing aid in the other ear, so have been mildly 'hearing functional' today. I'll wear the processor tomorrow.

Meanwhile, the initial meeting with my speech pathologist was to be this week, so I've missed that and will lose whatever benefit he/she provides for at least another four weeks. That's definitely a 'bummer.' At my activation, I was given the instruction to get used to the sound of the device, but was given no specific instructions about aural rehab. I assumed that I'd be introduced to those items at the appointment this week - the canceled appointment with the speech pathologist. 

I've downloaded all the rehab documents from the Cochlear Americas web site - and have created a couple of documents myself that I believe will be every bit as helpful. I'll continue to read aloud now and then. It's going to be a long four weeks!

28th entry ~ December 8, 2023

Activation Day Plus Three.

I’m less than a week into my activation, having been activated Tuesday morning. In my package, I got both the Cochlear Americas Nucleus 8 and Kanso 2 processors. I’ve been wearing the N8 all of the time, but today tried the K2. It took me a few seconds to get it placed; regardless of where I put it, it didn’t feel secure. When I turned to walk into the living room, it dropped off my head. I’m done with it and will take it with me for my one-week appointment and exchange it for a second N8. (The N8 is giving me a mild bit of discomfort behind the ear; that’s why I decided to try the K2 today).

By the time of our church choir rehearsal Wednesday evening, it was towards the end of my second day with the N8. Every sound was the same high, squeaky beeping sound (it turned out to be C#, if anyone is interested in that bit of information). I noticed at the end of rehearsal, though, as the director was speaking to the choir, that I could hear what I’ll refer to as ‘vocal inflection’ in the beeps – slight rises and falls in the pitch that exactly mimicked the vocal inflection as she talked. I couldn’t understand a word she said, but it was the first time that speech wasn’t just a ‘speech-rhythm’ of that incessant high C# noise. The rehearsal was pretty awful for me. The piano sounded weak and horribly out of tune and the choir was out of tune and seemed to be singing mostly a handful of notes. I was following along with my music, sitting apart from the choir, using only my CI at times, and also with my hearing aid at times.

With my hearing aid in my ‘good’ ear (it’s bad, but it’s not as bad as the other one), I can still play piano okay – and I can hear well enough to know that my playing is pretty nice. After all, I don’t have to match the pitches; I only have to play the right keys. As has been the case for many years, I am unable to tell how loudly or quietly I am playing, but must rely on the muscle memory and the physical sense of touch I have developed (over many years of playing piano) for the various dynamic nuances required of the music. I believe that I do not play the quieter sections quietly enough, while I play with too much force in the louder sections. At any rate, after practicing a few measures of music after the choir members had left the sanctuary, I told the music director that I would plan to play my solo piece in the Christmas concert we are presenting this Sunday evening.

This morning, mid-morning, I read aloud for the first time while my wife was getting ready for us to go to lunch with a friend. I was able to make out the words, very faintly, in my implanted ear. I believe that if someone else was reading and I was not following along, I’d be unable to understand the words – but this experience was a ‘positive’ for me, certainly.

I meet with my speech pathologist for the first time this coming Tuesday.

Some observations since activation:

• I determined that the high-pitched screeching beeping noise that comes from the CI is a C#. The first time my wife ran the microwave, the pitch began and lasted as long as it took for her coffee to warm in the cup. In those few seconds, I hummed the tone and easily found it on the piano. It sounds exactly like my tinnitus, in that high, squeaky range. I can’t tell exactly what octave range the C# is, but it’s way up there!
• Initially everything sounded the same – that incessant C# responding rhythmically to every sound that came through the CI’s microphones. In only a short while, it took on the effect of constant feedback from a loudspeaker. It’s quite disconcerting.
• Every key on my piano sounded that same C# – also very disconcerting. Today, I am able to play with my CI on and my hearing aid removed and I’m able to play well. For Sunday night’s Christmas concert, I’ll remove my CI and play with my hearing aid in my ‘good’ ear.
• Listening to a news report from my wife's laptop across the room from me this evening, I was able to hear the ‘vocal inflection’ effect of the newscaster’s voice as she made her report. I wasn’t able to understand a word she said, but at least I was not hearing the ghastly C# with every syllable she spoke.
• The worst environmental sound in our house, so far as my personal hearing is concerned, is water running from a faucet. The second is the sound of scooping ice into drinking glasses from the bin in our freezer. The microwave is not at all unpleasant, but rather a gentler sound, more akin to a humming sound than an abrasive one.

27th entry ~ December 5th, 2023

 Hearing Update. Activation Day.

I have a new backpack!

My appointment lasted right at two hours. The first half was with the audiologist and an assistant, who ran a number of tests and did some sort of 'measurement' tests with various beeps and other sounds - sounds that I described as "crickets on steroids."

After the initial tests, the cochlear implant was activated and, honestly, I thought that the noises from the tests were continuing. It took me several seconds before I realized the noises I was hearing were words being spoken to me by the audiologist and her assistant. As we talked, I realized that the sounds I was hearing were what the CI was interpreting as speech - and it sounded like amplified tinnitus sounds to me. As I think about light shows that are set to blink on and off to music, I think the sounds I hear from the CI are what it would be like if my tinnitus were set to the same rhythmic patterns as speech sounds.

The second half was with an audiology assistant who presented me with my new backpack (see photo). It's loaded with all of the hardware, the cases, connecting cords, spare parts, and the like. She walked me through about half of the items in the bag. The main emphasis in this meeting was to be sure I learned how to use the basic equipment - turning the processor on and off, taking the battery off (and putting it back on), charging the battery, using the drying case, and a number of other things. I have three additional devices for the CI, which we will work with at my appointment next week.

As I've worn the device now for about 4 1/2 hours (since about ten o'clock this morning) and have listened to many other sounds, I can report that everything - and I mean everything! - sounds the same. The coffee pot perking, my own coughing, the click of the computer keys as I type these words, words that are spoken to me, shutting the car door, playing the piano - it all sounds the same, with no sense of pitch differences for the various piano keys. Thankfully, I have some hearing in my right ear - my 'good' ear - sufficient to help me understand what it going on around me. If I had to rely solely on the cochlear implant, I would be in serious trouble.

Speaking of my 'good' ear. Since the CI surgery (four weeks ago), its effectiveness seems to be reduced by about half of what it was prior to surgery. In an earlier post, I said that I felt like it was in mourning because it has lost its mate - and that is a fairly accurate description. Our ears and our brains work as a team - and the team suffers when one of the team is injured or has quit working. I'm definitely not hearing well. That said, I am thankful for what hearing I have left in that ear.

The hearing aid in my right ear is not compatible with the CI, which is going to be problematic. My phone is paired with my hearing aid, which is how I am able to receive phone calls. The phone cannot be paired with two devices at the same time, so I'm unable to connect to the CI app, thereby losing access to many features I need in order to get full use of the CI. Consequently, I expect to be fitted with a new compatible hearing aid in the near future.

I was hopeful for a better starting point on this journey of aural rehabilitation. I know I have a long road ahead of me and that I will experience a lot of frustration along the way. But I'm determined to make the best of it and find whatever interesting scenery there might be along the way.

Thankfully, I'm not on this road by myself. My traveling companion on this journey is my wife, Carolyn. I'm thankful, too, for the support and encouragement of family and friends.

The road has gotten pretty rough today, but I'm sure it gets smoother just beyond the bend!

26th entry ~ December 1, 2003

Over the last several days, I have created an online blog and copied my journal entries into it. As much as I was helped by reading blogs of other CI users, as well as other resources I found online, I felt like perhaps someone in a similar situation would benefit from reading my story. This blog is a result of that line of thinking. Last night, I finally got the blog tweaked into a design I like, using Blogger (one of the many Google apps).

This entry is mainly about the ‘Helpful Resources’ section I added last night (in the right column of the blog page). The list includes information about hearing loss, cochlear implants, and hearing loops, a ‘hearing assistance’ technology I have only recently learned about. The items are all things that I have enjoyed reading and have proven helpful in my hearing journey, particularly my decision to proceed with the cochlear implant.

The last item on the list, Vera’s Story, and her blog More Than a Bit Deaf, are the two things that were most inspirational for me, the most hopeful. Vera’s story is actually two tales – one as told by Vera and the other told by her husband, Nigel. The impact of hearing loss, of any degree, is felt by the one with the loss, certainly, but it affects the entire family unit.

My wife and I were both drawn to their story, as it seemed to reflect our own journey, a journey we’ve been on for roughly thirty years. The list of things that Vera and I neither one hear are quite similar – things we’ve not heard for many years, or heard only faintly. The ways that Vera and Nigel interacted (or failed to interact much of the time) were similar to our own. To see it and hear it described by other people, another CI user and her spouse, brought it home to me in a way that I’d not previously experienced. The sadness, anger, grief, frustration, and all the rest are not just my own – it’s a shared load, a heavy load to bear, and I share it with my wife, our grown children, and our grandchildren.

My CI will be activated Tuesday morning, four days from now, and I ‘sort of’ know what to expect, thanks to Vera and Nigel. If my own rehabilitation is as successful as Vera’s, I will be absolutely thrilled beyond measure. Even if it’s not, I know I have made the right decision. Not to try is to fail.

I hope this list of resources proves helpful to other people. I made a decision quite a long while ago to ‘do my research’ about this, and it’s been a wonderful learning experience. Typing “deaf,” “hearing loss,” “hearing aid,” “cochlear implant” and similar terms into a search engine was my starting point. The items on this list are the ones I saved to my browser’s bookmarks and I am happy to share them.