A VERY FAST YEAR

05. May 2017 · 1 comment · Categories: A Personal Journal · Tags: , ,

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.

AFTER ALL THESE YEARS

05. July 2016 · 3 comments · Categories: A Personal Journal · Tags: , , ,

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.

ACTIVATION OF MY COCHLEAR IMPLANT

10. June 2016 · 1 comment · Categories: A Personal Journal · Tags: , ,

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.

IMPLANTED AND WAITING

10. May 2016 · Write a comment · Categories: A Personal Journal · Tags: , ,

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.

REALITY CHECK

28. April 2016 · Write a comment · Categories: A Personal Journal · Tags: , , ,

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.

TWO WEEKS

21. April 2016 · 3 comments · Categories: A Personal Journal · Tags: , ,

One of the sidebar features I have discovered on my journey toward a cochlear implant is support community that is out there. Advanced Bionics ( AB ), the makers of the device I will be getting, provide space for an excellent forum on their web site. There are hundreds of people there from all around the world who either have a cochlear implant ( CI ) or are waiting, as I am, to get one.

I thought I’d check it out and left a short note on the “I’m new here” page about my impending operation. Before long there was a page full of responses from people who were willing to share their experiences and offer encouragement. As in almost every other area of life, talking to “users” is often the best source of useful information. It was very comforting.

I was amazed to find that more than half of those respondents were bilateral recipients of a CI. I have only seen two people with a CI. Both were unilateral recipients. I personally do not know anyone who has one. I follow a blog written by a woman living in New York City who speaks of going out to dinner with three other friends, all of whom had a cochlear implant. Life in the city!

The actual information I have received on the forum has been very helpful for me as I am in the process of making some decisions about some options that are available to me. That’s when talking to someone who has had to make similar choices and who have opinions based on personal experience becomes useful. I’m here to tell you that the personal testimony is alive and well.

One more thing: I found a video of the actual operation and watched it. I’m not sure that was a good idea. But there it is. 🙂

Two weeks now until my operation. I just knew you wanted to know. Thanks for reading. Stay tuned.