Jack Barnes was implanted in 1988 when he was 11 after suffering a total sudden hearing loss. It was an experimental process at the time.

Thirty-three years later is still using the original surgical implant but is now on the 8th generation of external, improved technology. He recently received a Cochlear Nucleus 7. He is a unique resource who has traveled the entire road of the history of cochlear implants. Inspirational because of his perseverance and, as you will discover, his unstoppable drive in his endeavors.

Transcript

Voiceover:

Cochlear Implant Basics is a site for candidates, recipients and their families and friends. If you or a loved one is profoundly hard of hearing, newly deaf, or have experienced sudden hearing loss, we are here to share our stories and tell how receiving a cochlear implant can be a life-changing event. This site is not medical advice, nor is it brand specific.

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Within these podcasts and videos, you will meet recipients who faced hearing loss situations and hearing aids could no longer provide comprehension of speech or music. They share the stories of how they lost their hearing, their struggles with growing isolation from their family and friends, their inability to compete in the world of business, their difficulties of navigating air travel without hearing, how the joy of music disappeared, and the panic of not being able to use a telephone to contact 911 to get aid for a loved one.

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They will talk about their fears and the reason they procrastinated to get a cochlear implant and the reasons they moved forward. How receiving a cochlear implant changed their lives and the lives of those who surround them. You will meet audiologists and surgeons, and those who support the deaf and hard of hearing communities. Welcome to Cochlear Implant Basics. Reminder, Cochlear Implant Basics is not offering medical advice. Please consult your own healthcare provider.

Richard:

Jack Barnes is one of those unforgettable characters I’ve met along my hearing journey. I had received my bilateral cochlear implant surgery about a year before I met him. I had treated my processors with extreme caution, afraid to damage them and lose my precious gift of hearing. Then I attended a presentation that Jack gave with a slideshow. He was running marathons in the pouring rain while wearing his external Cochlear processor. Cochlear tough was the only descriptive term I could think of. There was no sport, aside from boxing, that was restricted by wearing a cochlear implant.

Richard:

Jack was implanted in 1988 when he was 11 after suffering a total sudden hearing loss. There was an experimental process at the time. He is still using the original surgical implant, but is now on the eighth generation of external improved technology. Cochlear is always backwards-compatible.

Richard:

We’re speaking today with Jack Barnes. First, just give me your name, the date and your location.

Jack Barnes:

Absolutely. It’s good to speak with you, sir. This is Jack Barnes. It’s Tuesday, February 16th, and we’re speaking from Miami, Florida.

Richard:

Excellent. Tell me a little bit about your hearing loss. How did it happen and we’ll go from there.

Jack Barnes:

So this goes all the way back to 1987. I was a normal hearing child with no problems at all, and quite suddenly, contracted meningitis, which turned out to be bacterial and presented very much like the flu. So I went from very nearly perfect hearing to no hearing overnight, very abrupt. And just happened to be by way of luck and circumstance, the cochlear implant had recently become available as an experimental surgery for children. And I was fortunate to receive the implant about a year later in 1988.

Richard:

How old were you then?

Jack Barnes:

I was about 11 going to 12 at that point. So I’ve now had the same internal Nucleus 22 cochlear implant for over 33 years.

Richard:

And you’ve never had a problem with them?

Jack Barnes:

Not a single day has it been anything other than completely reliable.

Richard:

I remember when I first started investigating cochlear implants, that Cochlear said that the internal should last about 73 years. So at my re-implantation surgery, the surgeon hasn’t been born yet.

Jack Barnes:

You’ve already got it on the calendar, I noticed. In my case, when the implant was discussed, it was brand new. It’s never been done before. So there wasn’t any kind of concrete guidance as to how long it might last within in the internal implant. I’ve been extremely fortunate that the initial guidance that was provided has long since been exceeded, and I’m now on my eighth platform for external sound processors.

Richard:

Explain what the platform is about. People-

Jack Barnes:

Sure thing. So there’s two components of the device that together create sound for me, one being the internal implant, which is what is physically embedded into the inner ear cochlea. And then the external processor, which engages by way of magnetic connection and passes the programming to the internal implant. The external sound processor also has the microphones that capture sound and pass through the coding to render the sound processing on the inside. So the eighth generation that I’m using now was the Nucleus 7 for the N22 internal.

Richard:

Which was the first one you used?

Jack Barnes:

I began with the WSP, the Wearable Speech Processor, and this had three AA batteries. And you will remember the Sony Walkman. It was about the size of a Sony Walkman with three AAA’s that I would wear in a hip pack on my waist.

Richard:

The funny thing is that you’re now mentioned you’re on the eighth and you’ve had it for 33 years. So we’re talking about an upgrade approximately every four years.

Jack Barnes:

About every four years. That’s where I am on average, which is really incredible when you think about it. Right now, you and I are speaking utilizing technologies, one of them being Bluetooth, that didn’t exist when I received my internal implant. So the way in which the manufacturers, in my case, Cochlear, has made a choice to continue making the new external processor backwards-compatible with Legacy internal implants, advancing the technology and incorporating it in the external sound processor is amazing.

Richard:

But I need to ask you about the N22 implant. There was an issue for a long time about getting the Nucleus 7 compatible with it. Can you give us a little background or why that was?

Jack Barnes:

So I can’t speak to the company side of that. I can only say that certainly the Nucleus 6, which I participated in the launch, that was definitely on the market. I want to say this goes back to 2015. So from that average we were just discussing, that period from N6 to N7 was about as expected from my view.

Richard:

Okay, but you had an issue. The N22 was not compatible with the N7 for a number of years, two or three years.

Jack Barnes:

Yes. The Nucleus 7 launched in 2017 and it was originally compatible within the N24 implant. As is always the case, the manufacturers wanted to serve and showcase the current offering with the broadest possible number of users. In the case of myself and other pioneers of the technology, there aren’t all that many of us left, and so it’s a great testament to the company itself that they choose to make that device backward-compatible at all. But it’s a very strong expectation of mine that many of the things that are on the internal modern implants, that the external device relies upon in order to communicate, don’t exist in my internal implant.

Jack Barnes:

And so I would imagine there were very significant technological and engineering challenges that had to be overcome to create an N7 that’s compatible with my device. It’s my experience that each cycle of update for the external processors, there’s usually at least a year lag, sometimes more, between when the processor first comes to market and when it’s offered for Legacy users. In this case, the duration of time from when the Nucleus 7 was offered for the N22 was not out of line at all of with my expectations. Very happy to receive it.

Richard:

Now I want to go back a step. You were about 11 when you had the implant. Tell me about how your parents reacted to it when you lost your hearing.

Jack Barnes:

I would imagine they weren’t happy about that. Probably not the most pleasant of moments for anyone. But we were certainly excited about the prospect of the cochlear implant, which they had no knowledge of before I lost my hearing. But it just turned out that we were living in Phoenix at the time, and one of the centers in America that was at the forefront of implant technology as well as process, was the House Ear Institute in Los Angeles, which was close enough that we were able to make direct and frequent visits to House Ear. And it turned out that not only was I a candidate, but they had strong optimism about the outcomes that I might receive. Both of my parents were enthusiastically in support of the process.

Jack Barnes:

One thing that not everyone knows about cochlear implantation is that once you’ve lost your hearing entirely, as I like to say, there’s no downside. If it completely fails, I’m going to be exactly as I was before I got the implant. And certainly in my case, the outcomes were and had been extraordinary. So the prospect of my remaining hearing was definitely a very strong positive for my parents. And they were in the support of my receiving the device.

Richard:

Did they do two at the same time? Was it bilateral surgery?

Jack Barnes:

Back in the day, there really wasn’t bilateral implantation. Certainly not as prominent as it is today. As an experimental surgery, when I received the cochlear implant, the focus was proving that it worked at all for children, and it was really not until I would say at least 20 years after I received the device, that bilateral implantation became as common practice as it is today.

Richard:

Do you have two now or just one?

Jack Barnes:

I only have the one now.

Richard:

Have you ever considered going for the second?

Jack Barnes:

I have and I’ve had a number of consultations with surgeons, and they assure me that while it can be done, the quality of sound is unknown, given that so many years have passed in the time that I have not heard out of the unimplanted ear. I know that you yourself probably have views on how that works.

Richard:

I was totally deaf for 35 years and the sound is perfectly natural. So again, yes, it can be a crapshoot, but the length of deafness is not necessarily an indicator that it won’t work.

Jack Barnes:

Nope. And no one has suggested it wouldn’t.

Richard:

You get the cochlear implant. You’re now in junior high school.

Jack Barnes:

Just before, actually. It was at the end of elementary school going into junior high.

Richard:

How did you do in school with the cochlear implant?

Jack Barnes:

I was very lucky in my teachers, when I lost my hearing, were very supportive and I remained in the mainstream classroom. Actually spent the remainder of a full academic year without being able to hear at all and benefited from sympathetic teachers, lip-reading teacher, who was a speech language pathologist who helped me develop some skill and understanding without being able to hear. And very sympathetic classroom students who took notes in some cases on my behalf. So I was very grateful for support all around.

Jack Barnes:

Once I received the implant, the following summer was the start of sixth grade that I entered with the benefit of the cochlear implant. And it helped tremendously. And then it really became the foundation for all the success that was [inaudible 00:12:41].

Richard:

How’d you deal with the telephone with one ear?

Jack Barnes:

With the telephone it was a challenge. I actually used the TDD for a while. As a matter of fact, that was the thing back in the late 80s. And so the TDD was very helpful for me, as I relearned to hear using the device with the phone. Over time, that became very natural for me as well. Actually the first job that I received coming out of college was in commercial finance, making telephone calls all day long. So the acceleration and the adoption period was pretty rapid. It worked out very well.

Richard:

In college, you didn’t have a problem because of the hearing?

Jack Barnes:

Only in very select cases. I happened to have one economics professor who was the co-author of a principle that had won the Nobel Prize in Economics, who just so happened to have the deepest voice and the least expressive face in the history of spoken language. And so I did reach out and see if we can get some assistance in better understanding that specific individual. But for the most part, the classroom setting has been one that’s always been very comfortable for me. So I sit up at the front of the class and I’m engaging and connect directly with professors to better understand what I can do to capture more of the lesson. Worked out very well.

Richard:

I have to tell the story here that I first met you at a Cochlear convention and you were the speaker. And I had been implanted just over a year before, and I was treating my cochlear implants like they were delicate instruments. You stood up on the stage with your slideshow of running marathons in the rain with a cochlear implant.

Jack Barnes:

That’s true.

Richard:

Suddenly it turned my entire perspective around. Let’s talk a little bit about what IP ratings are, the waterproof aspect of the cochlear implant, and how they affected you.

Jack Barnes:

So, IP V6, IP V7, these are different standards, different ratings that define both the depth and duration that devices generally can be submerged in water. I can assure you that I have pressed well beyond the limits of all of these ratings both intentionally and unintentionally across my devices, and the most recent cochlear device has been extraordinary. The Nucleus 6, Nucleus 7 are amazing in their water resistance. As a Floridian yourself, you’ll know that we do not lack for opportunity to test things out in water, and both swimming as well as in the rain walking my dogs, it’s a tremendous re-insurance that I can be outside with these most modern devices and really not have concern that the devices will suffer for humidity or direct water exposure.

Jack Barnes:

I was in Fiji traveling early 2000s, alone, rolling through the Colo-i-Suva Forest, crossing a creek. And I dropped my then implant, which I think was the 3G, but don’t quote me on that. One of the earlier devices. And I dropped it right into the river and pulled it out and panicked, dried it off, and fortunately was able to regain some functionality as we went. But the degree of confidence that we have in these most modern devices is really amazing in terms of their waterproofness and environmental toughness.

Richard:

Talk to me about music. How do you deal with music?

Jack Barnes:

Cannot more strongly recommend music as a training technique for relearning to hear. I’m often misunderstood when I use this word training practice. People think I’m talking about hard work. I guess, to a certain degree, I am. But everything is training. Everything is practice. This conversation, it’s training and practice. And it’s that intentional, purposeful listening that I think creates the breakthroughs that help us understand spoken words in context. And [inaudible 00:16:48] to distinguish hearing from understanding. For me, listening to music has been one of the most important tools for enjoyment, but even beyond enjoyment, learning to understand spoken words [inaudible 00:17:04].

Jack Barnes:

So one of the things that I’m wanting to do when I lost my hearing and then regained it with the Nucleus 22, was better understand how I could understand what people were saying in noisy environments, which was not easy for me at the time. So I bought a copy of the Beastie Boys Licensed to Ill and opened up the inner jacket, the liner with all the lyrics on the inside. And I played it at intolerable decibels, as often as I could, reading the words, as I listened to the songs. And over time it became a very strong tool for distinguishing spoken words in the midst of background noise.

Jack Barnes:

So beyond the joy that is listening to music, I think it’s an also important opportunity for those with hearing impairment, and certainly those with cochlear implants to train and to listen with intention.

Richard:

It’s interesting you should say that because one of the rehabilitation techniques I recommend to people are YouTube music videos, but you have to also put in the word, with lyrics, because the brain needs the lyrics to start to make sense of everything. And it works. It’s a great technique. Music is a great trainer. So you’ve traveled. Nothing to stop you.

Jack Barnes:

Travel is a joy. Travel is just a joy. Unfortunately the year 2020 did put a pretty significant crimp in our travel plans, as it did for most others who enjoy like we do, but we’re very, very much looking forward to it. One of the more recent trips that we took, my wife and I, was just under a month that we did in China. And we originally started where we had been at Make-A-Wish Southern Florida gala that had a pre-gala auction. And we purchased a weekend in Shanghai.

Jack Barnes:

And somehow a weekend in Shanghai became a 28-day trip across China that included a week’s long study of Kung Fu at the Shaolin Temple in Dengfeng. We tested the ability of the Nucleus 6 to withstand sweat and humidity in Dengfeng. But travel is an incredible opportunity and I cannot more encourage travel generally, but certainly for those with implants, because it presents such an opportunity to consume new experience.

Richard:

On the other side of that page, I traveled for 35 years with no hearing, including the circumnavigation of the world. And I could never hear the tour guides and I had to buy books of every port we were going to and read up before I got there. So I’m looking forward one day to doing travel again with hearing. It makes a big, big difference.

Richard:

Let me ask you another question here about what would you like to see in the future of the next generation of cochlear implant, the processor?

Jack Barnes:

From a internal perspective, well, internal external hearing [inaudible 00:20:14], one of the things that excites me are the increasing duration with which power will last. The Nucleus 7 that I’ve just received has the benefit of batteries that are powered by USB connection, which means that I now have much less concern about being able to hear if there’s ever a hurricane that knocks out power, because I have battery packs and generators that can now power the batteries. But the degree of independence, I think, that will result from either longer-powered devices or maybe even fully-implanted device are both very, very exciting. I think there are some technological hurdles by way the skin flap and how waterproofing works with microphones before we get all the way to fully-implanted devices. But it’s hard to think that that’s not on the radar at some point.

Richard:

That’s a very interesting point because the new Nucleus Kanso 2 is rechargeable only. And now I’m watching on social media, people in Kansas and Texas with no power for two or three days, they can’t charge them up. So it’s still the battery issue. Yes, I agree that the batteries have gotten better, especially something called the Vartas, V-A-R-T-A-S battery, which has been able to increase the power of the lithium side. So the future for battery power is absolutely astounding.

Richard:

What else would you like to add to this? Would you like to tell people who were thinking about getting a cochlear implant you’ve walked in their moccasins? What would you tell them?

Jack Barnes:

I would tell them not to wait. Time is short. Time is the one resource that is truly scarce. And each day that we go without hearing, or at least each day that we go without hearing for fear of what the process to regaining hearing might be like, is a day that separates us from the possibilities of life. And that’s a concern to me that there might be people avoiding this conversation or avoiding signing up for the clinical examinations that might lead on the path to cochlear implantation. I would say don’t hesitate. There is no downside. Certainly there are considerations. Certainly there are implications, but I would not want for anyone considering this process, this technology, this opportunity, from a lens of fear, there’s just no reason to.

Richard:

That’s absolutely on point. Jack, I wanted to thank you for taking your time. I’m sure you’re going to be helping many, many people with this interview. So thank you very much.

Jack Barnes:

Thank you for having me.