Sue Smith - COCHLEAR IMPLANT BASICS
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Sue Smith

As she describes it, Sue had a lifelong progressive moderate to profound sensorineural hearing loss in both ears.

Wearing hearing aids from the age of eight, she struggled but used many of the compensation tricks that are familiar to those of us with a hearing loss.
But she went beyond what we may have done and her story would take hours and provide an encyclopedia of useful tips.

My interest was to have her focus on music, a topic of major interest to many candidates. Her involvement with music and being married to a musician, meant that as her hearing loss progressed, her world was shrinking.
Sue received bilateral cochlear implant surgery and was activated with two Cochlear Nucleus 7s in 2018.

She talks about her experience with music both pre and post activation.
I hope to do a second interview with Sue so she can share her experience of how she managed her career and business without hearing. In the interim, I am glad she agreed to share her knowledge and experience with music.

This interview was done via Skype. It may sound a bit thin but it is clear.

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. 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 9-1-1 to get aid for a loved one.

Voiceover: 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: Sue Smith was introduced to me over two years ago when she was first investigating cochlear implants. Her severe hearing loss, which she describes in her interview, was at an impasse. As we communicated over the weeks, it became obvious to me that music played a huge part in Sue’s life and her questions were often oriented to that aspect of cochlear implants. While all cochlear implants are first and foremost concerned with speech comprehension, I talked about my own experiences with hearing music again for the first time in 35 years, and like me, Sue was qualified for bilateral surgery. And like me, she was scared to proceed. In the end, she did get bilateral cochlear implants. She received two Cochlear Nucleus 7s. I wanted her to share her experiences with hearing music again. It’s a question that many, many candidates for cochlear implants ask. This interview was done on Skype. I apologize if the sound is thin. I promise the information is important. This is her story.

Sue : I began having difficulty with my hearing when I was eight years old. A routine school testing discovered a deficiency, so they sent me to a specialized audiologist who tested me further, and they determined that I needed a hearing aid in my left ear. So I started wearing a hearing aid in my left ear at that age. I got a second hearing aid when I was 14. I have sensorineural loss, and they didn’t have any explanation for it, so it was kind of a mystery to all of us. There’s no hereditary hearing loss in my family. It’s just one of those things. It may have been caused by a childhood illness, who knows? But anyways, it was moderate to severe at that age, and it just gradually progressed over my lifetime, worse, and I eventually lost most of my high frequencies within the last probably 15 to 20 years. I’m 58 now. I got a second hearing aid at the age of 14. Once I had that, it was better, but it was still always a struggle to understand speech.

Richard: Right.

Sue : So I was totally reliant on lip reading.

Richard: So you depended on lip reading in high school and college. What kinds of support did you get there?

Sue : Well, it was just basically the hearing AIDS, you know. I went and got my hearing tested at the Santa Fe School for the Deaf, but as far as school, I just met your regular public schools. I learned to talk to my teachers about seating me at the front where I could hear better and see them, and I learned that I had to be proactive and ask questions to get the information that I missed, because I missed a lot. But somehow I managed to get the information I needed from reading and talking to the teacher, talking to my co-students, that sort of thing.

Richard: So you were mainstreamed. Your parents never considered a school for deaf or hard of hearing or anything?

Sue : I don’t think they seriously considered it. I think they felt that my loss was mild enough and that I had the support of the teachers and staff that I would do okay in a public school setting. It wasn’t total deafness, you know, it was just a mild loss. So I was able to function just fine in a public school setting.

Richard: So your severe loss really occurred after college, in other words?

Sue : I always had pretty severe loss at higher frequencies than at low frequency. So I did have good low-frequency residual, but it did gradually get worse. It was probably around college, maybe 10 years after, that it really started taking a nosedive over that time. Yeah.

Richard: Okay. You got out of college and you had to find a job because you weren’t always in the picture framing business. What was your career like?

Sue : Well, I didn’t go straight into my career. I actually went back to graduate school, but for two years in between college and grad school, I was doing odd jobs, renovation and remodeling, landscaping, restaurant work, that sort of thing. Then I moved to Arizona and went back to school for museum work, so that was really my focus was anthropology and museum studies, both as an undergraduate and as a graduate. But then I got married. So I didn’t really finish the master’s degree, but that’s just me. That’s another story.

Richard: That didn’t have to deal with your hearing loss?

Sue : No, not really. I think I did pretty well, overall, as a student because I knew to be proactive and ask for the information that I missed, but I still felt like I missed quite a bit during those days because you can’t get everything. You’re only limited to what you can see, read, and lip read and so it’s kind of difficult. But I managed to get through it pretty well. There wasn’t work available in that field. That’s kind of how I got into the printing business, because we got married and then I moved back to Kansas with my husband, and I had to find a job. This was a time when the humanities were taking a dive and nobody was hiring in the museum field unless you volunteered first. I needed a paying job and I ended up in the frame shop at Michael’s stores. That’s how I started framing.

Richard: actually. You learned at Michael’s. Everybody has to start somewhere.

Sue : Yes, I did. You didn’t know that?

Richard: What about, talk to me about how you dealt with the customers with your hearing loss.

Sue : Well, I am pretty much very, again, lip reading reliant. I could hear with my hearing aids. I had two hearing aids, right? And I could hear them talking to me, but I couldn’t understand them unless I could see them. So for the most part, I was able to function just fine on the counter, as long as I could deal one on one, I could not use the phone well. I could not understand the PA system at Michael’s stores, but there were enough other framers that I had support there to fill in those blanks, if needed. I actually went into management at those shops, and I did just fine. The phone was one thing I couldn’t do, pretty much.

Richard: That’s pretty important, our not being able to use the phone. Did other people make the calls for you?

Sue : Yes, other people made and took calls. I attempted to take calls early on, but after a couple of years I just couldn’t understand a word being said to me. It was gibberish, so I gave it up. I just stopped using the phone.

Richard: That’s interesting, because other people I’ve interviewed said that had to leave their careers because they could not use the phone or they could not deal with clients because the clients expect them to be fully functional. You found the same thing?

Sue : It was definitely a disadvantage, and it’s even more so of a disadvantage when I left Michael’s and opened my own shop, but I have always been able to work around it. Sometimes you have to rely on the good in people to help you out, and I think that’s a large part of how I got through all of that, because it was just so hard not being able to communicate by phone. It’s such a thing that’s taken for granted, but then came faxing and emailing and all these messaging technologies came up, and that really just helped me pick up the ball and run with it. People are willing to work with you. Sometimes I have wonder, though, how much business I lost because I couldn’t hear or use the phone.

Richard: That’s a very interesting point, very interesting point.

Sue : I can tell you more about how I’ve coped at my own business. Even though I don’t use assistive technology, I have an answering machine that says I’m hearing impaired, leave a message. Originally it said leave a message, fax, or email and gave an email address. And so I managed okay that way, but you’ve got to wonder how many people would call that machine, get that message, and just hang up. So that was always haunting me.

Richard: That’s a really excellent point.

Sue : Yeah.

Richard: You don’t know what you’re missing when you have a hearing loss. That’s a point we make over and over and over again. Well, let me ask you about support you got from your family and your friends and your church. Did they all stick by you? Did anybody disappoint you?

Sue : Oh yes, very much so. Yes. Just everyone, family, friends, the schools for my children, kids, everyone knew about my hearing impairment because I made it known to them. I think it’s very important for this sort of disability. You have to communicate with people about it. I can understand that it’s easy to withdraw and be insecure and shy about it, but you have to let them know that you have to communicate this way, and most of the time they will.

Richard: Okay. I wanted to interview you, especially, because of your involvement with music. A lot of people who are candidates or recipients struggle with music, but you seem to have a very unique perspective, so I wish you would talk about that for a few minutes. The change from hearing aids to cochlear implants.

Sue : I’ve got to say, it sounds pretty darn good. Right off, I have a background in music. I lived in the bass line for a long time because of the high frequency loss that I had, and as those high frequencies went away, my husband is a musician, so I’m exposed to music on a regular basis, and I grew up with music, so that’s a big part of my life. With hearing aids, it gradually became less and less of the melody, the high instrumentals, the upper register sounds began to disappear, which was very distressing because my husband would sing a song he’d been singing for 20 years, and all of a sudden I didn’t recognize it because I don’t hear his part of it anymore.

Sue : So that was very distressing with hearing aids. By the time I got to cochlear implants, I agonized over that decision to go bilateral, because I knew it was going to change and I knew it wasn’t going to sound as good, but I also knew from talking to other people, that it’s possible to rehabilitate it to where it sounds pretty good, which it does. My experience with that switch is that before I didn’t have the highs, I was still missing half the music, whereas after, the lows go away, which we all know. The bass goes away because the electrode array doesn’t extend all the way into the cochlea, and you’re also being inundated with all of this high sound that you haven’t had, either you haven’t ever had or you haven’t had it for a very long time.

Sue : So to me it seems like early on with the cochlear implants it was distorted. It was just overwhelmingly vocals and high instrumentals, and I couldn’t understand the lyrics. I’ve never been able to understand lyrics, ever. Gradually, with rehabilitation, it got to a point where I’m getting the mid-range and the lower registers back. They’re there. I can hear them. They’re just really hard to hear, and they’re not predominant anymore. So it’s like swapping the bass for the treble. On the other hand, I’m hearing stuff I’ve never heard in music. I’m able to discriminate instruments, now. I can hear lyrics more and more. I’m hearing crystal clear lyrics, which is unheard of for me. It’s just an amazing process, but it takes work. It takes listening, listening, listening to the same stuff over and over and over again.

Richard: That’s what I think candidates want to know. Now, you’ve been implanted now how long?

Sue : I’ve been activated for almost 20 months now.

Richard: Wow. To 20 months?

Sue : I have 20 months, yeah.

Richard: Right, so 20 months, you’ve gotten most of the music back, but it’s improving all the time?

Sue : Oh, most definitely. Now, there’s qualities to the music that are still lacking. It’s not your natural hearing, obviously. But it’s pretty darn good. I find myself struggling to find the right terms to describe what I’m experiencing or not experiencing, as it may be. But sometimes it seems a little toneless. I also find that I’m getting that back, that feeling of tonality and harmony. So on one hand I hear all this stuff great, and it still moves me. I still love it. It’s still music. I’m so happy about that.

Richard: Yeah. You know, it’s interesting what you’re talking about when you say you can’t find the terms. It always brings me back to that scene in the movie of Children of a Lesser God when she was deaf and he had hearing, and he’s trying to describe music to her. He couldn’t find the terms.

Sue : I haven’t seen that movie. I need to see that. But yeah, that’s exactly right. It’s just a richness that natural hearing has. I’ve experienced that. However, what I get now, these are sounds that I really have never heard on this level, and even though the bass has fallen into the background more, that’s where it’s supposed to be. The bass shouldn’t be the first thing that you hear about a piece. The other thing I’ve noticed is that different music sounds different. Some things sound better than others. That’s going to be the rule no matter what, but a lot has to do with personal preference, too.

Sue : This is hard to convey sometimes. I would just like to say that, given focused rehabilitation with pitch apps, it could probably continue to improve. I feel like I am continuing to improve over this time. I haven’t reached my full potential with music yet. I can feel that it gets better the more I do with it. I’m listening to an album that I’ve never heard. I know maybe one or two songs from long ago. Van Morrison is who I’m listening to right now, and I know almost all the songs on that, just listening to it now. I needed a little help looking at lyrics and stuff, but just focusing on repetition really helps a lot, and you start hearing things that you didn’t hear.

Sue : It helps me to have a musician husband sitting next to me in the car saying, “Can you hear that organ?” Or “That’s a harmonica.” Sometimes I’ll need help. Say, “That sounds like a trumpet. Is that a trumpet?” “Nope, it’s a sax.” So I’d go back and I listened to it again. Then, “Oh yeah, that’s a sax. I can hear that little quality of sound that a saxophone has.” It’s just this constant process of identifying and then going back again, identify then go back and listen to it again, and your brain just picks it up that way. It’s crazy.

Richard: It’s fabulous.

Sue : It’s amazing.

Richard: That is fabulous.

Sue : Yeah, I’m totally blown away. I’m really happy with that outcome. It will never be exactly the same. I accept that. I’m okay with that, because I gained a lot. You know, I’ve lost a lot, but I also gained a lot, so I’m happy. It’s a balance. It’s something I can always work on. Yes.

Richard: Fabulous results, fabulous results. So as long as you had Greg with you to help you with the music, you made faster progress than most people would make with music. And better results, probably.

Sue : Well, and it didn’t sound good at first. I’m just like everyone else. I’m “This sounds awful.” I listened to my favorite James Taylor CD and I was just, “Oh man, this sounds horrible.” At the very beginning, okay? Honestly, Richard. I was just, “Oh God, what have I gotten myself into?” I had a stereo system in my shop with speakers. Greg has a PA system in here for his music, and I played James Taylor’s Hourglass, which was my therapy CD before CIs. I mean, I’d listen to that over and over again. I have a habit of loving a CD and then just putting it on a loop and listening to it over and over and over again. It drives my husband nuts. But he likes these guys, too.

Richard: Yeah, that’s a great way. I love that. I love that.

Sue : I will say, that CD, the James Taylor CD, was my benchmark because I listened to that and it was a relatively new one, so I didn’t know the higher parts of that CD very well because I wasn’t hearing them. So when I put it in the stereo system at the shop right after my activation, it was like, “Oh my God, this sounds horrible.” I could not recognize the songs at all, and it was pretty distressing. But I thought, “Okay, Richard said it sounds good. Richard said it sounds good.” Just keep listening and you’re hearing memory starts to kick in, and then the more you listen, you remember the song, you remember how it goes, and all of a sudden you’re hearing it again.

Sue : It takes a while. I spent probably a couple of months listening to that one CD, but there were some others that I pulled in. My thing was to go through the CDs and see what sounded good that I remembered and listen to those. And that’s what I did. Dan Fogelberg was the other one. Dan Fogelberg and James Taylor. And you know what? James started to sound pretty good after a while. It was just like a whole new dimension on these songs. It was really neat in that way. Even though it may not be perfect music hearing, it’s still, it’s all this stuff. All these high tickety percussion sounds and oh my gosh, things that had gone away had come back. It’s kind of a mixed experience. You know?

Richard: That’s right, yeah. Well, you know, when we first met through social media and you were trying to find reasons to move forward and we talked about it many times, and because you and I are unique that we both had bilateral surgery. Now from your point of view, why did you decide to go bilateral in the one operation?

Sue : Well, you were instrumental in that decision, but my thinking was, and I had read enough studies about the benefits and advantages of binaural hearing and the things that your brain does with two ears that I can’t do with just one. That was one reason. Secondly, I was given that option by my surgeon, and I’m like, “I’m being given a gift here. I have a choice.” Both of my ears are equally bad by that time. The other thing was, my hearing aids were old. They needed to be replaced, one had cracked out, just been repaired. Having a CI in one ear and an old hearing aid in the other ear really wasn’t going to do me that much good, and I couldn’t afford a brand new hearing aid. So that was the practical economical aspect of it. And then of course there’s one surgery, one recovery, one rehab. Your ears are rehabbing together. Your brain has both ears working at the same time. It just made sense to me.

Richard: That does make sense. And you know that one of the issues that comes up on social media all the time is that the activation day, the expectations now are very, very high because they see videos just like yours where you’re understanding speech at the turn on. But it’s unique. How did you feel on activation day? Everybody’s seeing your video.

Sue : Oh God, I feel so guilty, because I know that so many people don’t get that, and so many people struggle for months after activation just to hear a word. So I totally feel blessed with that. I’m just so lucky that that’s how it went for me. On the other hand though, what’s interesting about that is that my ears aren’t the same. One ear is significantly worse than the other ear. So that’s actually kind of an interesting thing, because if I had chosen the worst ear, it might have been a whole other trip. You know, I might not have gone bilateral. But as it was, I got booth ears activated, and the video was with my right ear, and that was the first ear she turned on. My right ear is my stronger ear. It hears much more clarity and speech. It’s just amazing how clear it was right off the bat.

Sue : And I think after the left year was activated, I realized what a difference there was between them. The two ears together hear almost perfectly. It’s great. The left ear still lags. It’s one thing about going bilateral at the same time eliminates is any question of which ear is better, you know. I will always push for implanting the better ear, if your ears are more or less the same if you want to do one at a time, because that ear probably has better stimulation history. My right ear was always my better ear as a kid. You know, my left ear was always worse. Even though they were about the same just before I got implanted, my right ear is so much better. I don’t know if that’s because of my ears, I don’t know if it’s because of my surgeon being right handed or left handed, I don’t know if it’s because a resident did my left ear? They told me that wasn’t the case. I had to ask.

Richard: Now you activated, you’re guilty that you did so well, and my next question to you is how has your cochlear implant changed your life? Is it for better or worse, changes at work, with family, with your friends?

Sue : It is so much better. My world has opened up wide. I am still afraid of the phone, but I am gradually overcoming that and that’s a psychological thing. I can understand speech perfectly through the iPhone. The streaming’s amazing. Everyday life, it’s so much easier to deal with people in general. I don’t have to struggle to watch every moment to understand what’s being said to me. I had to feel left out in a group. I really don’t have to say I can’t use the phone, even though I’m still doing that. I’m realizing that I can actually understand pretty good. And I’m telling you, this is something I’ve never had. It is just the most amazing experience, and I can’t thank people who work on this technology enough. The surgeons, the audiologists, Cochlear Americas. I’m telling you, it’s just pretty amazing. I just can’t say any more than that. It’s been amazing being able to communicate with people with so much less effort.

Richard: Well, you know, that’s a very interesting question as well about obviously you don’t have any regrets. I haven’t heard a single one yet. Are there any features you like in particular? You’re wearing the Nucleus 7, but are there any features you like in particular, or features you’d like to see in the future?

Sue : Well, I totally love the ability to stream from my phone. That’s a pretty awesome feature. I maybe don’t use it as much as I should, but it sure is pretty neat. Another thing about that, too, is that streamed music sounds really different from music that you listen to in the open sound field, like in a room or in a car. So it kind of gives my brain the best of both worlds. Really, the only complaints that I have are how the coil gets tangled up in my hair, and then the processor doesn’t sit on my ear so well sometimes. You know, it’s still stuff like that. Minor inconveniences, compared to the joy that I get just being able to hear. I don’t care about the rest of that stuff.

Sue : It’s just so fantastic to go outside and hear crickets and cicadas and frogs and all these sounds that I knew as a kid. It takes me straight back. I think it’s still a little rough around the edges sometimes, but that really is my only complaint. That’s just something I’ve accepted. It does bother me that it’s not perfect, you know? Because I can hear it pretty darn good.

Richard: Well, now that you have your hearing back, are there any goals you have for the future, anything you would do differently now?

Sue : I haven’t really thought along those lines, but you know, it occurred to me I could go back to school. I mean, I could go back to school even if I couldn’t hear, but that’s just having learned to cope all my life. Right now I’m pretty well entrenched in my business, and I don’t really have anything I’d rather be doing at this point, that would be relevant to my improved hearing. I’m just saying that it’s so much easier. You know, I’ve actually taken on something I would never have done before I had these. I am on the board of my local historical society museum. I have been for 20 years. I’ve always muddled through the meetings and again, missed so much.

Sue : Well, shortly after I was activated and hearing all this amazing stuff, our board president decided he was going to resign and relocate, and so we had to find a new board president. Yep. You guessed it. They nominated me, and I’m just going, “Can I really do this? Yes, you can do this Sue. You can run a meeting.” It was hard for me to say, “Okay, sure, I’ll do it.” I’m still a little uncomfortable. It’s only been a couple of months, so I’m president of the board of trustees at the Clearwater Historical Museum, too. But you know, things like that, I’m no longer terrified to do them. I’m no longer afraid to take on something like that just because I can’t hear, because I can hear. Little things in life have just gotten so much easier.

Richard: That’s the major thing in life, not a minor thing. All right, my last question for you is do you have advice for others who might be sitting on the fence?

Sue : Just do it. I know there are risks involved, but the repercussions of not doing it are worse. I’ve seen how having this wonderful hearing, even though it takes awhile for some people, can help you cope with things that happen to you and to your loved ones. If you can actually advocate for other people, that’s one thing you can do. If you don’t do this, you’re going to suffer. You’re still going to be struggling to understand. You’re still going to be missing out on life. There’re just so many things that you could accomplish with improved hearing. I think that the risks, even though they’re there, the surgical techniques have improved, the technology has improved. You really have a much better chance of gaining something from it than if you don’t do it, you won’t gain a thing. It’s just going to get worse. That’s why I would say, just do it. If you’re qualified and you’re struggling and feeling socially isolated, you really don’t have much to lose, and you have everything to gain.

Richard: Okay. That’s true. I would basically say, if you do nothing, nothing will improve. Sue, I really appreciate your time. It’s been a fabulous interview. Okay.

Sue : Okay. Anything else you need, just let me know.