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. 7th, 2023; activated Dec. 5th, 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 21st and 22nd. 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 22nd – 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.
