May 6 will be the one year anniversary of my cochlear implant surgery. It seems like it was just last week, but isn’t that always the case?

I have never experienced anything as life changing as this. (Well getting married the first time would qualify, but you know what I mean.) It’s not just learning how to manage the device but also the trips to the hospital in Boston for programing and learning. It has truly been an adventure.

Progress was slow in coming. I started off understanding some speech but there was little improvement for several months. Then things started to happen as I noticed sounds I was not used to hearing and we were able to “clean” up the device’s performance – searching for a purer sound.

Carol Ann, my partner in life, has a voice that has been surprisingly difficult to understand, even with the implant. After my last adjustment or mapping, things took a leap forward and we can now have meaningful conversations in most environments. Some restaurants and driving together are no longer situations non-gratis. We are thrilled about this.

Group conversations can still be a challenge and many public places are still out of bounds. The telephone is still troubling – depending on the voice on the other end. Even TV is better, but BlueTooth helps with the addition of the RemoteMic and an audio looped room for the T-Coil.

There are remaining tweaks and dedicated programs to be tried out but all in all this is a happy anniversary. There might even be a cookie somewhere.

Thanks to all my friends for your encouragement and understanding. Thanks to my friends on the Hearing Journey Forum who graciously listened to my whining and complaining and whose advise, encouragement and judgement have been invaluable.

I believe there is a new year ahead. I’ll hear you there.

An old friend sent me a link to a Roger Angell piece about growing old (he’s 93) from the New Yorker. I read it slowly and with a Kleenex box at the ready. In a moment of grandiosity my friend suggested that I might have written that, or something like it. There’s no way I could have done that, even though I could say “Amen!” after every line.

The most stabbing part of the essay was when he spoke of outliving so many people. This is a condition that sort of creeps up on you. You discover it when in some midnight hour you decide to find “old Joe” with whom you palled around with in high school and find that he died in Korea or succumbed to the big “C” a few years ago. If only you had known …

Angell lives in an apartment in Manhattan and talks of a large support community leaving cooked chickens at his door and here I am living in the lap of paradise – knowing dozens of people while hardly ever seeing anyone. I cook my own chickens, thank you very much!

It’s mostly my fault – not seeing people as much as I think I should be seeing people. I am not the conversational dynamo I once was. Being essentially deaf sort of puts a damper on conversation and rips the heart out of the desire to be around people in the first place.

I always wonder if anything I say is relevant to the on-going conversation. There have been times when I enter into a conversation only to be greeted by a stunned silence. Not because I have uttered some profound titbit of eternal wisdom but rather the unspoken response is more like, “What the fuck are you talking about!”?

I have a new bionic ear now that promises to deal with this condition and in fact it is working quite well. I feel very fortunate to have this technology available to me. I am more likely now to be able to keep up with conversations. It’s a work in progress – a process with which I am quite familiar.

One of my fantasies is being a part of a group of older guys who have breakfast somewhere every month or so to just be there and talk about stuff we all remember. I have an old friend out west who meets six or seven retired army and air force guys at McDonalds for 50¢ senior coffee. I’d pay more for better coffee, myself. I’d pay a lot more for better ambience. There was a time 50 years ago when I was in the clutches of purpose and calling that there was a small group of ministers who managed to have warm and supportive relationships with each other. We golfed, lunched and hung out. Of course, when I bailed out of the crusade, that was that.

There is today in Baton Rouge a group of my old high school buddies – all retired engineers – who meet monthly. I am in touch with one of the group who tells me that now and then I am mentioned. It’s a strange feeling, but I like it.

I’ve stopped trying to find old friends from long ago. It’s a dead issue – no pun intended. I have lots of live friends, albeit mostly the age of my children. Even so, we don’t see each other enough. What’s enough? It’s what it is.

The take-a-way from all this is this: Be in your life. Don’t think about it – live it.

Now if I can just remember to do that.

The other day I was deep in thought – a tricky and sometimes disturbing place to be – when I noticed that there was, what sounded to me like, some static in my cochlear implant sound processor. Something similar had happened before and I had to have the device exchanged. It was distressing to think that was happening again. I have two processors so I exchanged them but the noise continued.

I was in the midst of writing an email to my audiologist to see if she had any suggestions when I decided to go to the kitchen for a refill of darkroast. I was pouring a cup when I noticed that the static was gone. Ah ha! I said. A clue! I walked back to the chair where I was sitting with my laptop when the static started up again.

Thinking this was some kind of electrical interference I unplugged everything within reach to no avail. The noise continued. The box in which I keep the hearing aid that the cochlear implant replaced was on the side table as well. I picked it up and the sound that I was hearing increased. Ah ha, again! I opened the box and the little device was singing like a chickadee. It was turned on. When I turned it off the noise I was hearing stopped.

I had to admit that No. 1 – I am deaf. No. 2 – the sound I do hear is either “processed” by the sound processor of the cochlear implant or it’s the amplified frequencies I can hear, which, of course, leaves out the frequencies I can’t hear that are in the complete sound profile that surrounds me all the time. So, what I hear is incomplete at best.

A person with normal hearing would have zeroed in on the source of that spurious noise in an instant. I’ve walked away from running faucets, failed to respond to my name being called and simply missed aural information everyone else was taking for granted. Which is to say, I have a physical disability that is mostly invisible to others but which compels me to be constantly on the alert to clues other than aural clues so I can proceed safely throughout my day. I feel no pain. I appear normal enough that no one ever gives me a second look. But I work hard to be aware of my environment when out and about. It’s tiring.

I am very thankful for what ability I do have to hear. But I also understand that I can not trust my hearing to be true. If I can have a successful conversation with a friend it’s a good day. If I can understand a friendly voice on my phone, it’s an excellent day. I ask for assistance and clarification when out alone and specially traveling by bus or train to Boston to have my hearing hardware adjusted.

There was a time when I was a boy when someone with my degree of hearing loss would have been sidelined, much the way my grandfather was – who was deaf so that we had to shout “Supper is ready, Grandad!”, and we smiled when he said something not knowing there was an on-going conversation at the time.

If you pressed me about what I considered to be the most valuable possession I have, I’d have to say it is friendship. I wouldn’t hesitate.

It isn’t money. I never had any and still don’t. It isn’t influence. I never had any and still don’t. It isn’t power – I don’t even know why that came up. Believe me – if I had power, I’d make a few changes. But, moving on, I can’t imagine life without friends.

That being said, over the past several years, I have experienced a quiet withdrawal from my “normal” active participation in a social life among friends and acquaintances. I can’t say it was unconscious, but it borders on that. I had become aware of how poorly we articulate our words and how seldom we focus on the process of communication – the art of being understood – not just understanding.

I found myself in the paradoxical position of being anxious around friends. It was tiring, frustrating and discouraging. This didn’t happen overnight. It took decades of slowly becoming aware of my disability and adjusting my life to compensate for that. Not altogether unlike a person bound to a wheel chair searching for access.

I have friends, of course, who “get” it and who understand what I need in order to participate in conversation. I also “get” it about others. You don’t change the way adults speak or behave as communicators. Most people do not see themselves as communicators. It is my opinion that most people think that being understood is somebody else’s responsibility. Of course, we know it’s a partnership – a two way street.

I’ve taken steps to treat my hearing loss. Over the years, I have had a half dozen sets of hearing aids, each a little more powerful than the last. In May of 2016 I received a cochlear implant on the left side. I now have frequencies I have not heard for many years. It is not perfect. It will never be perfect. It is better. I am still anxious around friends – wanting to understand and participate. I have a better chance at those goals now than ever.

Advanced Bionics, the maker of the device in my head, have a wonderful web presence. On that site there is a link to a forum called Hearing Journey, which you can find at: https://hearingjourney.com It is a journey. It’s different for everyone. No two stories are alike, but they all share one thing – the desire to understand. Check it out. You would be welcomed.

Sometimes the most obvious things are the most hidden. When I was first confronted with my hearing loss, a friend said to me, “Jerry, you do an excellent job of lip reading”. I had never even thought about lip reading and surely I did not think I was doing it. That was nineteen years ago.

Practicing with my new cochlear implant has revealed my secret life as a proficient lip reader, after all these years. What that means is I don’t understand diddly without looking at the lips of the speaker. Carol Ann and I can have a CI only conversation for an hour and when she hides here face it’s as though she had suddenly switched into ancient Navaho. It’s distressing.

My friend John on Hearing Journey – an online forum run by Advanced Bionics, the maker of my device – has just received his second implant. He talks about working with sounds that do not remotely resemble speech – yet. He gently reminds me that working outside my comfort zone is the only pathway to making sense of ancient Navaho – so to speak. This is hard. Much harder than I imagined.

Having a forum, a relationship with people on the same journey as I am, is proving to be a wonderful and meaningful resource. These people are scattered across the continent. It’s unlikely we would ever meet. I do have a friend – a fellow Mainer – who had her operation on the same ear, on the same day in the same town but different hospitals. Her husband was a nurse and my partner in life CA was a nurse as well. With all those share points we decided that we should meet on one of their trips down to Boston. We are having similar experiences in our initial learning phase. We encourage each other and take nourishment from the knowledge that we are in good company, and are not alone.

This is a rather boring journal accounting of my beginning moments with a cochlear implant ( CI ) yesterday and this morning. Be warned. 🙂

Yesterday was a most amazing day.  CA and I are exhausted.  The trip down and back from Portland to Boston is easy but with all the emotional stress, it was real work.  When we arrived at South Station we decided to walk the ten or eleven short blocks to the hospital. It takes about fifteen minutes. It is almost a straight shot sort of through China Town down Kneeland to Washington and then you’re there. The walk did us good going as well as returning.

The activation was remarkable.  I was able to hear voices at once.  Understanding was iffy, but there was an immediate acquisition of my audiologist’s voice.  It was not a normal sounding voice but one that might have been produced by a computer. I suppose it was. It sounded like someone was talking from the other end of a large diameter pipe or culvert producing a bell like overtone that made understanding difficult. Some of this might be dealt with through programing in concert with the brain making “sense” of what information it is getting through the CI.

With the CI alone I was able to understand about 75% of what she said.  As we progressed with the configuration these results began to fall off, increase and then settle in somewhere in between. 

She gave me 4 programs that essentially gave increasing volume and one that turned on the T-coil, which allows me to listen to TV and audio books through my hearing aids and implant when I am inside my audio loop.

I go back in a week and in the meantime I am going to listen to children’s audio books.  I am told that this is a great way to grasp simple words and increase brain function as it seeks to make sense of what it’s hearing.  

As time passed after we left the hospital I noticed subtile changes happening.  For instance, with both the HA and Ci going I was understanding CA more than usual.   I guess this will be the case for a while yet.  New discoveries around every corner.

Upon waking this morning my ability to understand speech was a little better. It seems that there are subtile changes happening all the while.

With the Ci alone, I would be lost most of the time.  As time goes on I am told that will get better. When I go bi-model – using the hearing aid and the implant my hearing is greatly improved from before the implant. This makes sense as i was getting little to no useful information from the left ear.

I am so pleased with the whole experience.  I have been tied in a knot these past few days – more so than before the surgery.

It seems that wearing a hat is going to be a huge problem.  I’ll be working on that.  I do hats. But that’s a minor challenge.

One of he most difficult parts about having hearing loss is helping friends who have normal hearing to understand what I am experiencing and what I need from them. Without fail, everyone understands, and without fail their behavior briefly changes before reverting to previous patterns. So I had this idea … …

What if at the next dinner party, cookout or celebration where I – a person well known to have serious hearing loss – was invited, I brought a supply of ear plugs and asked everyone to wear them then try to communicate as usual? … . . Well, it was a thought.

I remember hearing perfectly. I remember waking up to birdsong and wind in the trees. I remember the nuances of music – the overtones in every aspect of life that flows on a bed of sound.

I am two days away from the activation of my cochlear implant. Friends have expressed some serious hope and expectations about this. The advise I get from the hearing loss community is, “High hopes and low expectations”. It’s a process, I am told. It gets better, I am told. I’m looking forward to the time when my mind is filled with other thoughts – or perhaps none at all. Sometimes, I think that would be best.

Coming up on two weeks post CI surgery and every day there is some noticeable positive change in regards to the incision and surrounding area which was affected with some soreness and sensitivity.

I am finding that waiting is the most difficult part of recovery. The device won’t be activated until June 9th, and at this point that seems like a long time off. Meanwhile, I have developed some worrisome vertigo/dizziness that is not that unusual and is mostly temporary. I can’t tell you how much I am longing for the “temporary” part to kick in.

I was released to “full duty” (whatever that means) and spent the better part of an hour cutting grass – walking behind a lawnmower. It was good exercise for me and the dizziness seemed to be helped by the effort. Then this morning it was back. I am reminded of the old principle of two steps forward, one step back. There is progress, but not without encumbrances.

CA, my partner in life, says I think about this too much. She’s right of course.

Here is an interesting sidebar to all this. What are the chances that two people in Maine were having CI surgery on the same day in the same city, on the same ear? What’s more, what are the chances that each of these people are partnered with a retired nurse, both of whom were involved in hospice work? What a hoot! We connected on a forum sponsored by the people who make the devices we are getting. When the coincidences became known we decided ti meet for coffee. It was one of those “I’ll show you mine if you will show me yours”, kind of things. It was fun and quite comforting to talk with someone who was going through the same experiences that I was having.

Since my vertigo seem to get somewhat better from being up and moving around, I’ll see if a little more grass cutting might be in my future. Let’s see now – where did I put that bug dope?

Be well, and stay tuned.

On the morning of May 6, 2016, I received a cochlear implant at Tufts Medical Center in Boston. All reports say it was a successful operation and that the device works. I can’t tell you how happy I am to know that. It won’ t be activated for another month, which is a little longer than usual because of some personal conflicts.

We spent the night before – because I was first in line at 6am, and the night after the operation in Boston – because we figured after a general anesthesia and the two hour bus ride ahead of us we thought we might be better off staying over. It was a good decision.

It could be said that we didn’t sleep well in Boston. The tension before and the discomfort after the procedure fought against relaxing and sleeping. As soon as my head hit my own pillow I was out like a light. I have been able to sleep well for the past three nights as well as the odd pick-up nap here and there.

I thought I would just pop back and take up normal activities quickly. I quickly discovered that there was hardly any pop at all. I mean it was surgery on my head, general anesthesia, pain medication and – – – my age. That’s the clincher.

The idea of “Day Surgery” tends to instill a false sense of “Easy”. It ain’t that easy. At least not for octogenarians. It is true that you walk in and walk out. But you walk out with something less than what you brought in.

I’m good. I’d do it again. But it’s this kind of experience that really defines what it means to be old. Diminishing resilience. The bounce is gone. I could write a book about that.

Stay tuned.

One week until implantation. I keep having to remind myself that getting a cochlear implant is only the beginning of the process. It ’s important to remember a few things, such as, nothing can restore “normal” hearing. I believe the best that can be expected is the possibility of being able to better understand what is heard. Being able to take part in a group discussion and actually keep up would be like music to my ears – so to speak.

That being said, what is clearly understood about the CI is that when it is activated, no one knows what the recipient will hear. It is highly unusual to be able to hear and understand clear speech at first. The sound is digitally processed and presented to the auditory nerve. The brain may or may not know what to do with that information at first. Based on my personal experience, my brain often does not know what to do with the information it gets, so I’ll reserve judgement until activation day – May 31. That’s another long month away. I think that I think too much.

It’s been suggested that I go fishing. You know what’s really sad? I’d have to search for my fishing pole. I’m not even sure I have one that works. It’s been that long.

Stay tuned.