41st entry ~ March 5, 2025 ~ the final entry.

Hearing update – final installment – March 5, 2025

This is a lengthy one – but it’s the last one.

Today marks the 15^th month of the activation of my cochlear implant (CI). The implant surgery was Nov. 7, 2023; activation was done Dec. 5, 2023. I wish I could report that my ability to hear and understand speech, environmental sounds, and (especially) music has been restored and that I am once again able to participate fully in most social situations. Sadly, I cannot make such a statement.

The CI has enabled me to better understand speech in the enclosed sound-proof testing booth and in the confines of the audiologist’s small office (while sitting about three feet from her). In a ‘real’ social setting, though, I still miss most of the conversations going on around me. There have been improvements over the past year, but they have been in small increments – I’m grateful for everything I can hear, really. Without my devices, I hear absolutely nothing.

I sit in our weekly church choir rehearsal unable to hear the piano or any other voice except the two on either side of me. I sit during the church service and for the most part don’t understand much of what the pastor says during the sermon. I sit during the ‘joys and concerns’ every Sunday morning and am unable to understand even one joy, one concern. If those issues are listed in the weekly church newsletter, I’m at least able to read about them.

Typically, the adjustments for a CI end at the one-year mark, unless the patient requests further adjustments. In December (my one-year anniversary), I received an adjustment on a ‘let’s see how this works’ basis, and returned to the office yesterday for a final follow-up. I thought I’d be in the office about a half-hour; it was a two-hour session! In the testing booth, my hearing through the CI only was pretty abysmal; she didn’t give me any percentages and I didn’t ask for any, but I knew my responses were inaccurate for the most part. With both the CI and the hearing aid, though, my accuracy in repeating sentences soared to 92%, the best I have ever done. The difference between being in a soundproof booth and around a table of friends in a social setting is quite stark. If I could catch 92% of any conversation, I would be thrilled beyond measure. For the most part, I feel like a bump on a log and am content to go sit by myself.

Part of my adjustment session included an addition to the CI that effectively turned it into a hybrid device, part CI and part hearing aid. The result is that I am better able to hear lower frequencies. A practice-run through a favorite piano piece today provided a noticeably richer bass sound for me – and my own voice sounds a bit deeper as well. As is common after CI adjustments, I can tell that it will take me several days, weeks perhaps, to adjust to the new sounds coming into my head. Many things sound ‘too loud’ right now and I’m hearing some sounds I’ve not heard previously. With this adjustment, I have one more appointment scheduled before our sessions end.

Part of the listening test included responding ‘yes’ each time I heard a beep in the CI. I did not do well on that test. I realized, as soon as the test began, that the beeps were mostly at the same volume and ‘pitch’ levels as the tinnitus I experience (which was quite intense at the time of the test). The tinnitus never stops but is active 24/7/12/365. It only varies in intensity.

While I have missed so many of the sounds I love, I try to focus on what I’m able to hear. Right now, the house is quiet but I hear a low rumble that I assume is a motor of some kind – perhaps the refrigerator or the fan on the heating system. I have no idea, really, what it is – only that it is there. As has been the case for a long time now, I am unable to determine where a sound is coming from. In recent months, since my last adjustment, I have heard the sound of a bird quite clearly, something I’ve not heard for many years. I can sometimes hear when the trash truck motors by our house each Monday – but don’t always hear it. In the confines of our home, I’m still able to enjoy playing piano and am able to hear nearly the whole range of the instrument. Without my hearing devices, I’m unable to hear the top two octaves of the piano.

Mundane things like that may seem small, but they are things I have to acknowledge, things I am grateful for. Because when I remove my hearing devices at night, I am unable to hear anything – anything at all. (Well, except the ringing in my ears; the tinnitus never stops). In the last few days, in fact, I’ve become aware that I’m very near to the point of being unable to hear my own voice when I speak – and that frightens me, probably more than anything has frightened me along the 30-year journey of my hearing loss. On a more positive note, I was able to sleep through a rather severe storm a few nights ago, totally unaware of the thunder, rain, and wind. Peaceful, really. The singular advantage I have is that when the noises get too loud, I can easily silence them. All I have to do is remove my hearing devices.

There are so many frustrations. Some people’s voices are quite impossible for me to understand. One of those voices belongs to D.J., my young grandson. We love one another beyond measure, but I’m unable to understand much (perhaps most) of what he says to me. It’s like that with a lot of people’s voices. Like many folks with hearing loss, I just smile and nod my head, pretending that I know what’s going on. Normally that works, but not always – and sometimes I’ve given a reply that is completely inappropriate, having misinterpreted what was said to me. Other times, I have begun to speak while others were in mid-sentence, not even aware they were speaking. It’s humiliating – but all I can do is apologize, smile, nod, and pretend. I’ve been doing that for roughly 30 years and it’s still awkward, difficult, frustrating, and yes, depressing.

I continue to serve my church as a substitute pianist, filling in whenever our regular pianist needs to be out of town. Choir rehearsals aren’t easy for me. Thankfully, our choir director knows of my situation and makes certain I know page numbers and measure numbers when we rehearse sections of anthems. She sends me a rehearsal plan each week, which has proven to be immensely helpful, both as a chorister and as accompanist. When I’m asked to play for an entire service (we have two services each Sunday), I remind her that if there are any changes to the printed bulletin, she should write me a note with the changes – because I’m unable to understand anything that is whispered to me, even at close range. The church sanctuary, of course, is much larger than the living area in our house – and so the piano sounds completely different in that environment. It sounds to me like I’m playing in a room down the hall and only hearing the sound from afar.

Our choir warm-up exercises typically include 5-note major scales, along the line of 1-2-3-4-5-4-3-2-1, ascending or descending by half-step each time to expand the range. The sound I hear from the choir, though, is a ‘stretch’ version of the scale, with the 5^th note sounding a whole step higher. It’s disconcerting, at best, and when I’m singing with the choir, I often have to take breaks and allow my ears to ‘recompute’ the key of the music. I often drop out for a few measures at the point in an anthem where the music modulates from one key to another because the sound makes no musical sense to me.

I no longer listen to music for personal enjoyment. I loved listening to all manner of classical and popular music, but no more. I can’t understand the lyrics, I can’t hear all of the music (including any of the melody lines), and I can’t hear many of the instruments. It’s frustrating to watch a live performance and see the violin section of an orchestra sawing away at what appears to be fortissimo, and yet be unable to hear even one note of what they are playing. Using choral music as an example, my experience hearing music is to hear only bits and pieces of the alto line, with an occasional tenor voice popping through. Apart from my interactions with my family and friends, I miss music the most – as a listener and as a musician. I’m thankful I can still play piano. I was an accomplished organist, but had to quit playing several years ago because of my hearing loss.

I no longer answer my phone, but rely on trying to understand voice messages, then either returning a call or traveling to the person or business who called me. In fact, there is one message awaiting my attention right now, from our air conditioning service. I’m sure it’s time to schedule the spring service. It does not embarrass me, not even slightly, to begin a conversation with these words, or something similar: “I’m as deaf as a rock, so you will probably have to scream at me.”

I was lucky that I did not experience some of the side effects that are common following the CI surgery. But the one that affected me was the loss of my sense of taste. Nothing is totally tasteless for me now, but nothing tastes the same as I remember. I have always enjoyed a good hamburger, but since my surgery they seem quite cardboard-like. I keep trying to enjoy them now and then, thinking my taste buds may be rejuvenating, but alas, hamburgers are no longer at the top of my list of food groups! My surgeon told me that the loss of taste would likely last ‘about a year.’ I guess 15 months is ‘about a year,’ more or less. I’m not holding out any hope that my sense of taste will return.

I learned long ago that hearing and understanding are not the same, though they are often used (by hearing folks) as synonyms. I often say to my wife, “I am aware you are speaking, but I don’t understand a word you are saying.” That’s the difference, I think, between ‘hearing’ and ‘understanding.’

Remember the Peanuts movies? Remember Charlie Brown’s teacher? It’s no exaggeration to say that when I am sitting with someone or with a group of people who are in conversation (I typically say very little), much of what I hear is exactly the same as Charlie Brown’s teacher. I’m not holding out hope, actually, that my ability to hear – and thereby to understand – will ever return. I believe that I have recovered whatever hearing there is for me to recover and that my job now is to adjust to the new reality.

40th entry ~ September 5, 2024

My cochlear implant (CI) was activated nine months ago today, exactly four weeks after the surgery to implant the device (Nucleus 8 by Cochlear Americas, implanted Nov. 7^th, 2023; activated Dec. 5^th, 2023). I had done sufficient research to know what the possible side effects of the surgery were, how long it would take me to learn to hear through the device, and that there were no guarantees that the CI would, in the long run, be a solution for me. At the time of the surgery, however, I had run out of options – and felt like the CI was the “best road forward” if I hoped for improvement in my hearing. The hearing aid in that ear was doing all it could do – and it simply wasn’t enough.

I was lucky to have an experienced and talented ENT/surgeon, Dr. Wayne Berryhill in Norman, Oklahoma. Everything he relayed to me in our time together confirmed that I had done my research accurately; he was telling me things I had already learned. He’s a friendly fellow, easy to talk with, and made me pretty comfortable with the prospects of the surgery and the recovery afterward. It all went without a hitch. I didn’t experience extreme nausea or vertigo; I didn’t develop pain in my ear; I didn’t develop a facial tic – those are some of the more common side effects from the surgery.

Of the many potential side effects, I have been affected with only one – the loss of my sense of taste. It’s pretty nasty, really, worse than I thought it would be. Nothing (and I really mean nothing!) tastes the same as it used to. By now, I’ve come to accept that; but for the first six months or more, I always approached a meal with the memory of the taste of it already on my palate, only to have that memory shattered after taking the first bite. Initially, most food had little to no taste to me, but was mainly an experiment with “food texture.”

I remember that my first meal, a late lunch on the day of surgery, was a hamburger and fries at Interurban in Norman, one of my favorite burgers. It was pretty awful – “fried cardboard on a cardboard bun, with cardboard fries” is how I described it. Most food no longer tastes like cardboard to me, but much of it remains “texture only.” For many things, I can tell by taste what they are, though they do not taste the same (the raw carrots we had with our lunch today, for example, didn’t taste anything at all like a carrot to me). Other items have enough taste that I can enjoy them, though I know that they don’t taste nearly as good as I know them to be. I tried another Interurban hamburger a few days ago. The taste has improved, ever so slightly – I could at least identify it as a hamburger – but it’s not much improved over the “fried cardboard” taste. I opted for chips that time, but potatoes still don’t taste very good to me, whether baked, fried, mashed, or made into chips. I’ll try again in a few months.

Recently, Carolyn and I treated ourselves to one of our favorite meals, a steak dinner with baked potato and glazed carrots at a local steak house. It tasted quite good to me – but still not nearly as good as I know it to be. The potato suffered the most in the taste test; the steak and the carrots tasted fairly decent. Suffice it to say that I’ve not decided to give up eating – a guy has to eat, after all! But I don’t enjoy it nearly as much as I used to. Dr. Berryhill suggested that my loss of taste would probably last “about a year.” That is consistent with what I’d already read about it. CI users in some of the Facebook supports groups I joined, however, report that they still experience the problem after as much as two and three years, with little hope for improvement.

Part of the above discussion is confirmation that experiencing a CI surgery and activation is not a “one size fits all” thing. Every CI surgery and activation creates a unique experience of recovery for the patient. In those support groups, we learn what we might expect in our own journey from others who have already been through it, months or years ahead of us. We provide our own stories and experiences for those who are tagging along behind us. All of us who share our experiences are providing support for those who are struggling with the decision about whether to proceed with the surgery or not. It is a monumental decision; it is life-changing; it is full of challenges; it’s not easy. Once the surgery is done, there is no going back; it is not reversible. In fact, the residual hearing in one’s implanted ear is sometimes lost forever. In my case, when I remove my devices (the CI and the hearing aid), I’m essentially “stone deaf.” The singular advantage, so far as I have been able to determine, is that when my environment gets too noisy, or when I’m too weary of “the work of hearing” (yes, it is hard work – and it can wear us down!), I can remove my devices and enjoy total peace and quiet.

As I continue to struggle with my hearing – that is to say, my understanding – I’ve come to realize how quickly I’ve learned to move everyday sounds, television, interpersonal communication, meetings, church services, and more into the background. It’s completely unintentional on my part (or on the part of any person with hearing loss, I am convinced). One of the first “rules” for speaking with a HoH (a Hard of Hearing person) is: Get their attention. If you don’t get my attention before you speak to me, don’t be surprised if it appears that I am ignoring you. I probably won’t even know you are addressing me. In situations when I finally realize I’m being spoken to, the person speaking has already completed their thought – and I’ve not heard so much of a word of it.

Other rules of communication (I’ve stated these before, but will add them here): Maintain eye contact with us; Come closer (don’t speak across the room); Don’t cover your mouth; Speak distinctly, but don’t shout; Speak at a normal pace (or slightly slower). Give us a chance to understand you; effective communication is not the sole responsibility of the person you are speaking to. Always remember that – communication is a two-way street.

Remember, too, that there is a distinct difference between the words “hearing” and “understanding.” HoHs will often say “I can’t hear you,” even though they really mean “I cannot understand what you are saying.” Many of us, HoHs and hearing alike, use the word “hearing” in that manner. Most of the time, I expect, we can hear the sounds you are making, even if they are little more than background noise at the time. Hearing and understanding are not the same – not even close! It’s like the old Sesame Street song: ♫ One of these things is not like the other; one of these things just isn’t the same. ♫

So far as my ability to hear is concerned, I can say that my CI seems to be much more sensitive than my hearing aid at this point. It can pick up sounds that my hearing aid doesn’t. The sound of it, however, is still very much a digitized robotic sound and I tend to rely on my hearing aid for understanding speech. The combination of the CI and hearing aid sounds coming into my brain at the same time is quite frustrating – the digitized robot in one ear and the more normal-sounding device in the other. I long for the time when the CI will finally begin to sound more like the hearing aid (if it ever does; I’m told it does, but after all this time, I’m not at all convinced). This summer, for the first time in quite a few years, I’ve heard cicadas buzzing away in the trees – but the sound from the CI is very much like a rattlesnake warning me of an impending strike. In the quiet of my audiologist’s office, I am able to carry on a conversation with her, with very few errors of understanding, using only the CI and with the other ear plugged. In real-life situations, though, with all manner of background noises, I’m unable to do that.

The CI continues to improve, albeit very slowly. The correct understanding of that statement is that my brain is taking its sweet time to learn to interpret the sounds from the CI as speech sounds (and other sounds, too, including environmental and musical sounds). The CI is designed specifically for speech understanding; anything else is primarily a bonus. Some audiologists have learned how to make adjustments to improve musical understanding; my audiologist is not one of those. She is fairly new to the field and doesn’t have the experience that others do. She has promised to make an effort to learn more about making those adjustments – and I have promised to do my best to share with her whatever information about the process I can find (yes, from some of the folks in those support groups previously mentioned). The CI has a “music” setting, but it makes very little difference in the sound. In my experience, that’s not an uncommon thing.

A few days ago, our church pianist sent me a text. She and her husband have to be out of town the weekend of September 21^st and 22^nd. She alerted me that she needed a substitute pianist at church that Sunday and wanted to know if I was interested in doing that (I have done it quite often in the days prior to my surgery). I took a little while to answer, but finally decided that it’s time to get back into life as much as I can – and being a pianist is a big part of that. So I agreed to serve as pianist for the two church services on September 22^nd – a little over two weeks from now. The choir is singing an anthem, one I have accompanied many times before. We rehearsed last evening and the rehearsal went well. I’m unable to effectively describe how the music sounded to me, though. The piano sounds weak and tinny, almost like it’s distant, and I’m unable to hear much of what the choir sounds like – not at all like I used to. My primary focus is on the director and trying to follow all of her cues.

Further, I have been working much of this spring and summer on perfecting the music for a piano recital of Advent and Christmas carols, a program that I’ll play in mid-December (the date is not yet determined). In the relatively small space of our living room, I am able to hear most of the music fairly clearly. In the church sanctuary, though, the piano sounds so much different, to the point that my level of confidence in the sound I’m making is less – a lot less – than when I’m playing at home. I’ve learned to rely on my lifetime of motor skills, muscle memory, and the like as a pianist; to rely on the piano itself, which I know to be a fine instrument; and to remember what the dynamics shades between pianissimo and fortissimo are and how they feel to me. They “play” the same as they used to; they just don’t sound the same to me.

This has gone on too long. If you’ve read this far, thank you. I can only hope that my commentary in these posts will help someone make a decision about whether to proceed with their own CI surgery. In a way, I feel pretty miserable with my hearing, but I remember too well how completely miserable I was with it before the surgery and activation. I was at rock bottom. My CI ear is improving; my hearing aid ear is not – it’s only getting worse. If I live long enough, I’ll eventually have to decide about a CI on that side.

Hmm. What to do?

I’ll cross that bridge when I come to it.

39th entry ~ July 16, 2024

I failed to mention a couple of things in my recent 'hearing update.'

One is not related to hearing at all, but is a byproduct of the surgery itself. One of the several side effects that patients can experience is the loss of the sense of taste. My first meal after my surgery was a hamburger and fries at Interurban in Norman. It tasted pretty much like what I think fried cardboard would taste like. I couldn't even tell it was a hamburger, except it looked like one.

With most food, I can at least tell by the taste what it is, though it doesn't taste nearly as good as I know it to be. Watermelon and ice-cream still taste pretty good to me. If there are donuts at church, I'll have one and can enjoy the taste. But for the most part, I've lost most of the pleasure one gets from eating. Everything is just 'blah.'

The second thing is that, as my hearing through the CI improves, I sometimes am not certain that my hearing aid is still working. For understanding speech, in particular, I still rely on the hearing aid, but sound is becoming a weird mix of 'normal' sounds through the hearing aid and the more 'digitized' sound through the CI. I wish I could fast-forward through this transition stage - but the CI sounds continue to improve, albeit very slowly.

Since I was a kid, I've always liked hearing the chorus of the cicadas in the summer. For quite a long while now, I have been unable to hear them. But this summer I'm able to hear them again. At first I didn't even realize what I was hearing.

The CI seems more sensitive to sound than the hearing aid, so sometimes I hear something through the CI, but cannot detect it in the other ear. Such was the case with a nearby cicada a few days ago. Evidently it was in a tree I walked past (another issue for me is determining where sounds are coming from - I'm clueless). I could clearly hear a 'regular' cicada in my hearing aid, which was closest to the tree. In the CI, though, I definitely heard the sound of a rattlesnake warning me that it was about to strike. Honestly, that's exactly what it sounded like.

No, I didn't look down to avoid stepping on the snake - or trying to avoid it as it struck at my leg. I knew from my hearing aid that it wasn't a snake. But that's where I am with my hearing right now.

I'm happy to have missed out on the other common side effects to this surgery - extreme nausea and vertigo are common complaints, and it's not unusual for a facial tic to develop, because the device passes very close to the facial muscles.

I wish I was better able to describe sounds I hear. I played the special music and offertory at our church this past Sunday and the sound from the piano was quite strange to my ears. In my hearing aid assisted ear, the sound was very much like a piano should be, but on the CI side, it was that tinny, robotic, digitized sound that is so difficult to describe to someone. I continue to play; the sound continues to improve.