Enjoying Music Again After Implantation – Cochlear Implant Recipients Discuss Experience

Shari Eberts 0:00
All right, well welcome to This Week in Hearing I’m Shari Eberts co author with Gael Hannan, Hear & Beyond: live skillfully with hearing loss, and I’m going to be your host for this episode. Today we have two terrific guests. First is Roy Smith, a CI wearing singer songwriter and musician represented the US at an international music festival for Deaf musicians this fall, and second is Johanna Boyer, MED-EL’s musicologist and a researcher with a focus on music and cochlear implants. So thank you both for being here.

Roy Louis Smith 0:48
It’s pleasure to be here.

Johanna Boyer 0:49
Yes, the pleasure is mine.

Shari Eberts 0:52
Excellent. Well, today we’re going to discuss a topic that is very close to the heart of many people with hearing loss, and that is music. And the way our ability to enjoy music and appreciate music sometimes changes when we use hearing devices. So I thought I’d start with you, Roy. And I know each person with hearing loss has a story. So do you mind sharing a bit of yours? When did your hearing loss start? And you know, how did it progress?

Roy Louis Smith 1:24
I’m not sure exactly when it started. Actually, I was under the impression that I had completely normal hearing until I was about 27 years old. And I found out by accident, I worked in a pollution control lab, there were some sound pollution guys who wanted to test their equipment. And they asked for volunteers with normal hearing, I volunteered and found out I didn’t have normal hearing. So total surprise to me, I went to I went to an en ti expecting to have wax cleaned out of my ears. And I found that I had sensorineural hearing loss in both ears, it was expected to get worse. He told me I’d know when I needed hearing aids. So I was 27 years old.

Shari Eberts 2:12
Well, that was very similar for me. I was in my mid 20s, as well, when I first noticed I first noticed it though, wasn’t like I went somewhere and they told me about it. I went to seek out some help. But that’s that’s very interesting, because people sometimes have that wrong idea, right? that hearing loss is just for people of a certain age. And it’s obviously not it can impact throughout the lifespan. So boy, I know you had a really strong relationship with music your whole life, right? You really grew up with that. And I just was wondering if you could talk about what impact your hearing loss had on that relationship with music. And was there a point that maybe music, you know, felt out of reach to you because of your hearing loss?

Roy Louis Smith 2:58
There was I was actually in a working band. When I was 27. Then I was diagnosed. And the loss wasn’t that bad yet. So I continued to play in the band. It was an acoustic band, not real loud music. So I was able to keep doing that for a couple of years. I joined another band played Celtic music for a few more years. And I really began to lose the ability to hear music properly when I got my first hearing aid. At that point, you know what hearing aids are like, if you have them there, they amplify high sounds in the 1000 to 4000 Hertz range to make speech intelligible. I mean, that’s their primary purpose. But in the process, music gets lost, at least it did for me. And then, after a year or two, when I realized I could no longer tune my instruments, I couldn’t really hear the pitch accurately anymore. I couldn’t understand songs I was hearing on the radio anymore. I just gave it up and put my instruments away and and I’ve ordered my family not to play music in the house. If I was around, as it was just a reminder, I guess I might my daughter is still angry at me about that.

Shari Eberts 4:23
So how many years was that, that you were sort of struggling with? I guess that loss, right? That loss of your enjoyment of music, you forbid people to you know, to play and

Roy Louis Smith 4:35
I got my first hearing aid when I was 35. And I got my cochlear implants when I was 65. So 40 years of gradually declining hearing and ever more powerful hearing aid.

Shari Eberts 4:52
Well, now that you have a CI right there’s sort of a happy ending to this story, too. Okay. Took I lied earlier. Excellent. Did you get them at the same time? Or was there sort of some gap between that?

Roy Louis Smith 5:06
No, I had, I’ve heard of some real iron pants people that did that. But no, I got them at different times. I got one in 2013 and the other about 14 months later in 2014.

Shari Eberts 5:22
So that’s pretty close together, though. That must have been quite the change for your brain, right? Because we’re here with our brain. How did you manage that process?

Roy Louis Smith 5:32
It was, it was very interesting, because I was able to understand speech at a very high level instantly. First one, I mean, I was activated, I heard every word that the audiologist was saying every word that my wife was saying, we got in the car and drove home and I could hear every word they were saying on the radio for the first time in probably 30 years. Every word. So, sounded strange. I mean, I called it a Greek chorus. It was six different people at different pitches talking in perfect unison, but I could understand it. And speech sounded normal within a few weeks. That’s it. And I had been told that my instruments might all start sounding the same, like a synthesizer just or like chimes or something. So I was a little worried about that. And I and one of the first things I did when I came home from being activated, was I pulled some instruments out and tuned them and played them. And now they sounded like they were supposed to,

Shari Eberts 6:37
sort of it was just it was sort of instantaneous, that the music once again, sort of sounded the way you’ve remembered it.

Roy Louis Smith 6:44
Well, not exactly that. But it sounded massively better than it had with the hearing aids. I mean, I won’t say it sounded and are perfectly normal again, because it didn’t, I wouldn’t want to give anyone the idea that using a CI is, is like putting on glasses. The music sounded so much more realistic with a CI that all I wanted to do. At that point was listen to speech, I listened to audiobooks, and I listened to music. Probably for three or four hours a day. Wow, I listened to the sound of my own voice for about an hour a day just reading magazines out loud to myself, so that I could acclimate to the sound of my voice. And this, I think, is the secret to the to success with CIs is taking the time to acclimate. I did it not because I’m really determined person with a fabulous work ethic. That was all I wanted to do. I could hear again, I mean, it was this was so much better. And my, my other ear that had some remaining hearing was so much poorer with a hearing aid, that I immediately stopped using the hearing aid, and just decided to get the other side implanted as well. It was only a little bit better than the one I I had had implanted. So it was an easy decision.

Shari Eberts 8:17
And did you notice a difference between having sort of one implant versus two? Did that change your enjoyment of music or the way you could understand speech?

Roy Louis Smith 8:27
Oh, yeah, well, yes. I had gotten used to having just one for 14 months, but as soon as the second one was activated, it was just I was like Dorothy stepping into Oz, you know, Technicolor everything, it was just so much better. I probably should have taken more time to acclimate to the second processor the same way I did the first. But I acclimated to them both together. And it’s been very successful for me.

Shari Eberts 8:58
That’s terrific. And I know that Johanna was sort of involved in that process with you. Is that right?

Roy Louis Smith 9:06
I’m actually not, no, -not not in the early process. Yeah. After I was activated, I presented myself over over at the MED-EL lab in Durham, which is about 20 minutes from my house. And I met a fellow there named Bob Wolford, who was one of their software engineers. He’s now retired. And he introduced me to Johanna and at that point, I was I was being a guinea pig for Bob and music was a secondary consideration. But when I found out MED-EL had a musicologist on staff. I became intrigued. And I just, I basically bowed down before and I said use me as your guinea pig.

Shari Eberts 9:55
… so Johanna, what is a musicologist, right? I mean, I guess, can you explain what that is? It sounds like a fabulous job.

Johanna Boyer 10:06
Yes. So, um, musicology is the scientific study of music and that can entail a lot of different aspects. There are different fields of musicology such as historical Musicology, systematic Musicology, and at no musicology focusing on other cultures. But I studied or my focus was historical musicology with a little bit of system, systematic musicology. So, analyzing music, music theory, understanding a little bit the perception of music, how our brain works, what preferences humans have when it comes to music, and yeah, and after a basic degree in musicology, then I continued working and finished with my master’s. And typically, the longer you go on, the more specialized you get. And back then, when I start, when I studied musicology and Osnabrück in Germany, I focused on theater work, I also started working at the theaters as a director, assistant and also got to perform. And so my topic for my thesis was children’s overall.

Shari Eberts 11:48
Children’s opera?

Johanna Boyer 11:50
yeah, or opera for children.

Shari Eberts 11:52
Wow. Okay, that’s fascinating. Good for you. And so how did the How did you find your way to MEDEL, with with all of this knowledge?

Johanna Boyer 12:02
Yes. So that’s then I guess, the accident or the the unique story behind that, which is I became a cochlear implant user myself. So during my studies, when I was working on my master’s, I lost my hearing in one ear due to a meningitis, which was compared to Roy a sudden hearing loss a profound hearing loss. And so, after recovering from the meningitis, I tried to learn more about hearing loss, I never really had looked into this topic before, I, you know, took hearing for granted. And so I, you know, quickly realized that hearing aids were not a solution for me, since they amplify something that’s still there. But due to my profound hearing loss, there was nothing left. And so we or I explored cochlear implants. And I have to say that I just got very lucky being at the right place at the right time, because when you have single sided deafness, at least at the time, I became single sided deaf. There wasn’t much talk about cochlear implants for somebody that still has normal hearing in one ear. So I believe I was the fifth person in Germany that got implanted with a cochlear implant with still having one normal hearing ear. And now, this is FDA approved in the United States. And indications are overall growing and expanding. But back then, in 2009, when I became a cochlear implant users, with the situation I was in that was something really new.

Shari Eberts 14:03
Well, that’s terrific. And so how has you How did you adapt to that, you know, sort of these two different streams of sound right? Coming into your brain- How were you able to put those together and sort of make things sound unified, both for speech and then for music as well?

Johanna Boyer 14:22
Yeah, back then my surgeon told me that they weren’t really sure what was going to happen, if, you know, how would say to brain except this other input, and could I reuse it? And I still, to me, this was a simple decision, because to me, it only could get better and not worse one, so I quickly decided for it and I received a cochlear implant and I think the biggest benefit at the beginning was getting two ears, we already heard from Roy that getting the second implant was so much better. And that’s true for me as well. You know, to ears and going towards binaural hearing is so important for gaining back speech, understanding and noise to be social again. And it also is so important for music to have depth and nuances available and as a performer. Yeah, having these binaural cues to perform with others to be really in tune. My intonation had suffered as a singer really drastically during that while I was basically living with one ear, and so slowly, I gained these skills back. It wasn’t like turn it on, and everything is back to normal. It was a learning process. But still at the beginning, the biggest benefit was just getting the second input and having nuances and depth and stereo and color and stead of having everything in black and white.

Shari Eberts 16:28
So for effect, thank you for sharing that. So I know Johanna, one of your primary roles is planning international Sound Sensation music festival. And that sounds like a lot of fun. Can you tell us a little bit more about that festival?

Johanna Boyer 16:45
Yes. So our really main goal was to host the biggest ever music festival for hearing implant users. And we wanted this to be global and local. We wanted this to be virtual and in person, it sounds may be difficult to realize that. But we did make it work. And maybe the people that know about sound sensation, the metal music festival, they probably know about this virtual festival that happened October 6 through 8th. But that was actually all in need. How do you say that? The cream on the cake or the tip of the iceberg- because throughout the year, there were so many activities and workshops and lectures in the different areas. Some were virtual, some were in person. And so for example, we hosted a choir workshop for hearing implant users in Austria in June, it was a talent hunt in Spain and Latin America were they promoted the music festival over social media and people were able to post and submit little contributions and of those participants. Some The winners were selected, who got to participate in a music video. And there are so many more stories. And all of this basically culminated in the metal music festival that happened from October 6 through eighth, where we got to report about the activities where we were able to host in person or not in person to host virtual but live workshops for parents, for users, for professionals. So we really try to reach out to the entire community. And at the very, very end, it all ended with the final concert that took place in Vienna, where Roy represented the US. And I think, you know, he can share more about how this experience was for him personally. But Roy and I, we know each other for quite some time and we have done music together. We have actually played together at the European Parliament. And so it was kind of just natural to think of Roy and ask him if he would be interested in going to Vienna and perform some with his music there.

Shari Eberts 19:36
Yeah, so congratulations on that. Roy. That’s pretty amazing to represent the US at this large festival. Can you talk a little bit about how that felt and what what did play what did you do?

Roy Louis Smith 19:48
It was I was deeply honored. There is that it’s the sort of thing you can’t say no to I mean, it’s the opportunity of a lifetime. The kind The music I play I would call sort of New Folk. With an Appalachian kind of tinge to it, I play banjo and guitar. For the Vienna concert, I played only guitar. Because it was only two pieces. I performed with my wife, Janet, who plays the upright bass, and has been my support through my deafness and my recovery from it for I guess we’re on our 46th year of marriage now. And she’s, she was wonderful, she just, you know, he held up her half of the Act really well. And it was an extraordinary experience. Meeting the other musicians was the best part. Watching them perform really well was extraordinarily good. But the best part was after the concert, we all went back to the hotel, it was probably almost 11 o’clock, by the time we got there. The bar was closing at 11 o’clock, sadly, took over the lobby, and we went into the little, you buy it store in the lobby of the hotel and bought beer and wine for everybody, and sat and talked among ourselves until 3 o’clock in the morning. It was I mean, we all became mates, I would say just good friends. Just what was your experience like? What’s it like for you? How- How do you do this? How, how hard was it to get back on top of music? What problems do you still have? How are you fixing it? The great exchange of information, camaraderie. Several people showed up who are in the audience who are also implantees and musicians. And they shared their stories. It was just it was fabulous.

Shari Eberts 22:04
It sounds amazing. And just you sort of created not only this beautiful music, but you created this beautiful peer group right now that you have sort of to support one another, and to showcase your talents to one another and and hopefully play again together. At some point, do you have additional plans to do that? I don’t know if that’s something in the cards.

Roy Louis Smith 22:26
And actually, it stimulated me to start doing home recording, which is why I bought this fancy rubber band suspended microphone that I’m using. And I’m going to be involving my daughter this time, she has got a wonderful contralto voice, and my wife who is a second soprano. So we’ll be doing some three track, sing alongs. And just something to something to remember us by

Shari Eberts 22:56
fabulous. Let’s well please let us know when these are available. Because I would love to share it with everyone.

Roy Louis Smith 23:02
I’d be happy to do that.

Shari Eberts 23:05
So I think we have time just for one final question. And this I guess is for both of you if you have any advice that you would share for other people with hearing loss that can help them stay connected and continue to enjoy music. So maybe, Johanna, do you want to go first?

Johanna Boyer 23:26
Okay, so I think first of all, I would like to share that. All the content from the MED-EL music festival, Sound Sensation is still available. So if you are a candidate maybe for cochlear implants or your hearing implant user, I really encourage you to check it out. I’m sure we can provide maybe the the website or the link to the website. If not, if you just search for MED-EL and Sound Sensation, it will most likely pop up as the first search and Google I’ve heard from many other candidates that looked at different stories and little concerts and activities we did that it’s very inspiring and motivating. And I think as cochlear implant users or as a candidate for cochlear implants or any other type of hearing implant, we do always need some encouragement and motivation. It’s you know, not as simple as that. And second, or the second thing that I think is very important is to talk about music takes training and practice. And it also takes some time. And when I personally practice for music with my cochlear implant alone I I did some practice for the purpose of practice, but then I also just try to enjoy it. Try not to overthink it and focus. And I think in general, that’s probably not just true for music, but in general on the way of your journey with hearing implants, cut yourself some slack.

Shari Eberts 25:23
That’s great advice. Roy, do you have anything to add to that?

Roy Louis Smith 25:28
And I can amplify one of Johanna’s points, okay, which is the acclimation the brain is an amazing organ, it gets used to all kinds of changes. And it’s designed to do that. When you first start using a cochlear implant, things are going to sound strange. But the brain adapts Astonishingly, quickly. Keep at it, don’t give up. Don’t don’t think that it’ll always be like this. It won’t, it will continue to improve gradually. But it’s kind of like the stock market. Some days. Some days are bad, but the general trend is usually to get better. And I’ll see what during a boom. Yes,

Johanna Boyer 26:19
Sorry, I interrupted you, Roy. But what I wanted to maybe add at the end is, and I think I can, you know, speak for Roy and myself is that if you have questions, we are always happy to connect as a user or of course MED-EL is here as well for you. We have an amazing support team and engagement managers that are happy to hear from you about questions. And I’ve been in contact with many hearing implants users that want to practice music musicians or a non musicians, people that are just interested in music. And we’re happy to give some tips and pointed to do the right resources based on your current status. So at MED-EL we also have the Hear Peers community, I believe Roy, you are a member of that. So we have so many people that you can reach out to with your questions. So come out and let us know.

Shari Eberts 27:28
That’s terrific. Well, I thank you both so much for joining me today. I definitely learned a lot and I’m sure everyone who listens to the podcast will as well. And I really wish you both continued success in your own hearing loss journeys and your relationship with music of course. And to learn more about the Sound Sensation Music Festival, you can visit the website which is here life.medel.com backslash campaigns, backslash sound dash sensation. So thank you both again, this was a great conversation.