Life with a Cochlear Implant – Interview with Jill Rivoli and Lauren Deckard

Gael Hannan 0:10
Hello, and welcome to This Week in Hearing. I’m Gael Hannon. I’m a writer with hearinghealthmatters.org. And I’m also the author with Shari Eberts of our recently published book, Hear & Beyond, Live Skillfully with Hearing Loss. And our two guests today are doing just that. They have learned how to live well with their hearing loss and I’m going to do a brief introduction of them and then we’re going to talk cochlear implant. So Lauren Deckard is the founder and owner of Peak Mobility, a holistic healing center in New Jersey. During her final semester of college, I thought it said first final semester of college, Lauren unexpectedly lost her hearing and adapting to her new reality it took a physical and mental toll on her, especially when she was stuck in the corporate world. After being implanted with a Cochlear Nucleus 7 device in her right ear, Lauren left the corporate world and started her own business and holistic healing healing clients using the same methods she applied for her various ailments related to her hearing loss. Jill Rivoli was nine years old when she first realized that she couldn’t hear the way everyone else could. Over the next 40 years, her hearing would continue to decline, resulting in complete deafness in her right ear and profound loss in her left ear. And although she was fitted with hearing aid, it wasn’t until she received a cochlear implant, that she was able to experience the hearing world again. Today, she is an assistant general manager at an historic working Montana ranch, and she’s an avid hiker and tourist woman. And she’s been able to rediscover the sounds of nature, like horses chomping on food, crickets, birds singing water running in this dream sounds that she had not heard from decades. So I am pleased to meet both of you. And I know you don’t know each other. So here we are three women with cochlear implants, I got mine. So that we don’t know each other, but we are going to get to know each other. So I just gave a little background on each of you. But I’d like to hear stories from you. So I’d like to start off by asking each of you tell us a bit about your hearing journey and what led you to get a cochlear implant. So, Jill, why don’t you start?

Jill Rivoli 2:44
Thank you. Um, I’ll start by saying it makes me a little teary to hear that and to have shared experiences with the women. So thank you. And thanks for inviting me. Here hearing aids just they weren’t helping me very much and actually went it’s kind of funny that I went in to an audiologist and I said, Hey, my right hearing aid is not working very well, can you fix it? And he said, It’s not the hearing aid, it’s your ear, you have your he used the word dead ear, you have a dead ear, which I don’t like that saying, but um, so I was really shocked and scared, and you’re not sure I hadn’t even really heard of cochlear implants before. Or you hear stories about little babies getting them and I just didn’t ever cross their mind that I was a candidate for that. And he mentioned that and so I did get tested and I almost didn’t do it. You know, when you think about surgery and implanting something in your head, and ya know it’s scary, it was you know, I thought about it for a little while. And then I thought, you know, I don’t have much to lose, I certainly don’t have any hearing to lose. And if I can, you know, if there’s something available that can help me then then I’m going to give it a go and give it a chance. And it has changed how I function in the world. It has given me back more of a social life and I would not be able to function at the level on the executive level and luxury, you know, guests ranch and resort and I would not be able to do it without my cochlear implant it has it has definitely made there’s still challenges for sure. But it has definitely made me able to navigate my business life a professional life much, much easier. And yeah, it’s been a game changer for me

Gael Hannan 4:34
How long did it take you to make the decision? Like was it a year or was it days or?

Jill Rivoli 4:42
It was it probably wasn’t that long. It was really probably six months. I thought about it and did some research because like I said I really didn’t know anything about it and and then I met with a couple of different surgeons at a couple different places. I’ve been moving around and I And I ended up really liking the surgeon that had my surgery at Stanford University in California. And I really liked him and trusted him. And and yeah, and then just, and then once I made the decision, I was frustrated that I couldn’t get surgery faster in that process to go through.

Gael Hannan 5:18
Yeah, great. So, um, Lauren, tell us about your hearing journey. And what took you up to the point of making that decision and getting a cochlear implant,

Lauren Deckard 5:28
you’re sure. So I lost it originally when I was 21. And like, like you said, it was my last semester in college. And that’s supposed to be like, you know, your carefree fun times. And I did not have any of those times until I was able to actually, like, get my implant. So they first gave me when I first lost that they gave me Hearing Aids and similar, similar situation, they just wouldn’t were they weren’t working for me, they worked for about a year, and then the audiologist couldn’t explain why I kept losing my hearing for the next three years at least. And then when I was 25, I was pregnant with my son. And I also did a little bit of bouncing around for for to find somebody I was comfortable with, obviously, I didn’t want to have the surgery while I was pregnant. But it made me realize being pregnant, I was like, I’m not gonna be able to, like, hear his little voice, and I’m not going to be able to, and I really wasn’t functioning because at that time, too, I was in the corporate world, so people will call me, unfortunately, at that time, people would expect me to use the phone. Because things you know, like zoom existed, but it wasn’t the same thing as it was now. You know, like, chat tech space for businesses existed, but no one really use it. So you were kind of forced to use the phone, and I just couldn’t do it. So it was, for lack of a better word, it was kind of like humiliating, I mean, like I, I struggled really hard. And it was really, really hard to do like in the business world. So between that and then getting ready to have my son, I was like, you know, this time, like, I don’t want to, I don’t want to feel like I’m so out of sorts with everybody else, no want to feel included. So finally, I had my son, I waited a year until, you know, in a breastfeeding, everything finished. And the surgeon was one of the surgeons I met with, he was so nice, and he didn’t have any hearing loss himself. But it felt like he did, because he could like pinpoint exactly how I felt. And I was like, do whatever cut me open, I don’t care. Because it just it was so nice to find somebody who just understood what it really felt like. And that was hard to find as I went around to everybody. So I was really thankful that, that I went that route and chose him.

Gael Hannan 7:50
That’s wonderful. Both of you really put a lot of not just thought I mean, clearly with declining hearing, and then you’ve got I can just live with no hearing or I’m, it’s time to do something about it. But you really put a lot of work into finding someone you were comfortable with. And that’s not always the case. So I really applaud you on that. That’s, that’s amazing that clearly both very motivated women. So I love hearing people’s stories, you know, as a writer, and as an advocate, I mean, that’s how we learn to live better with our hearing losses when we can, you know, talk to people and get information. And in your case from some really good, professional, wonderful. Let’s talk a little bit about that period after implantation. Because I think you mentioned you were nervous about it, you’re putting something into your head and it wasn’t the experience, you know, that we didn’t know a lot of people with that if you’re like me. So tell me a little bit about after the surgery and even right up through the switch on tell me what that experience with what was it surprising or just tell me how you found Jill,

Jill Rivoli 9:00
I actually joined a lot of Facebook pages for cochlear implant recipients and users and so I was actually expecting the surgery to be worse than it was I didn’t have a lot of drainage I don’t you know, because you see some people with the scars, you know, like this and mine was just behind the ear. So the surgery actually went you know, easier than anticipated and I came back from that pretty quickly. And then I don’t I actually don’t remember that much between surgery and switch on like I don’t remember how much like I am yeah, I’m it is. But with switch on. I also have done a lot of research about what to expect and, you know, everybody said you’re not going to hear normally right away. I think that’s the biggest misconception that people have about a cochlear implant or even hearing aids that you hear normally again. It is not normal. And I did a lot of like apps on my phone and on my computer where it would play sounds, I don’t know if you both did this, but it would play different sounds. And then almost like a game, I would guess, which was running water. Is that a dog barking? Is that a person talking? Or is that a car honking. And at first, I could not tell the difference between anything. And it was a little scary. Like, I don’t know what that noise is. But But I, I recovered, I started training my brain really, very quickly. And I think within six months, I had gone from very, very, very low listening comprehension to in the 90%. And I had my doctors my audiologist told me like there’s some people have cochlear implants their whole lives, and they never get that good of listening competent comprehension. So it so obviously, it was a good candidate for it. And it worked for me. But it’s still, you know, people that know me, I’ll be like, what’s that noise? Like, if my brain doesn’t know already what it is. It takes me a minute to, like even jets flying over if I can’t see it. I’m like, What is that noise? And people will tell me and then my brain kind of goes, Oh, yeah, okay, we know what that is now, but it’s it’s been a journey for sure. But I will say that I think the time from when I got turned on to when I was actually hearing and in a way that was really helpful to me was very short, compared to a lot of people from what my understanding is, but But yeah, it was gonna scary and it was, you know, mine sounded like I hear people say some sound like Minnie Mouse or Darth Vader, mine kind of sounded more like, people talking sounded like Minnie Mouse with a Darth Vader helmet on maybe. It was it was kind of scary and weird. And it took a while to to get used to that. So yeah, that’s kind of how that happened for me

Gael Hannan 11:56
And all the emotions that go along with that. Yes. Yeah. A lot of them. Yeah. How about you, Lauren?

Lauren Deckard 12:02
I think I remember. So this fall will be my fifth year that I had it. So what I remember is like two weeks. So after surgery, the recovery part was actually kind of difficult for me just because I had, I can’t remember what they’re called, like those little crystal particles. So I had to do a lot of PT, because I my vertigo was so bad for like two, that was no one’s fault, just how my body reacted, which was awesome, because you had like, I had my surgery at Hopkins in Baltimore. And when I went back, I’m also allergic to anesthesia. So my poor surgeon was like, what’s wrong with you. But it’s all just comes down to me. But I had to use those goggles, I can’t remember what they’re called. But they’re like, for vertigo. And they, they project my eye patterns on this huge screen. And he watches to make sure like, I can’t even describe it. But it was like the craziest experience. And really, it just came down to him like giving me a couple of different exercises, which again, was cool to get me into like the holistic world. And that really, like expelled these pieces in my inner ear. And then I was fine after that. I think they didn’t allow me to use any, like hearing aids or anything afterwards, while you were just healing and they didn’t want to continue it before activation, I think. And as soon as I did, it was just like, it’s like you’re saying it was me was Minnie Mouse for like, two weeks. And when I was still in the corporate world I had like, like, the CEO of the company was like, really like he’s like a tough guy. You know, like, nobody messes with him. And he come in and asked me a question, and I would try so hard not to crack up. It’s kind of like a TV little mini mouse, but no one else can, like, hear it or explain it. But um, so it was kind of it wasn’t I’m glad it didn’t stick around. But like, for two week period, it was like an entire, like entertainment in my own head.

Gael Hannan 13:57
So are you are you bimodal? Do you have a cochlear implant and a hearing aid? And the other one? No,

Lauren Deckard 14:05
I am actually so I could get it on my second side. But I just I just don’t want to do it yet. So I just have it in my right ear. And then like what I don’t, I could get into my left, but I feel like I can’t describe the sensation because I know I can’t hear anything on this side. But by having on this side. I feel like I can hear everything. If that makes sense.

Gael Hannan 14:27
There is some sort of pass through something. Yeah. And I can’t explain I’m not an audiologist. I don’t know the science. And that’s okay. Because other people do. You know, I remember when I got at switch on and I’m back to my father’s house. My husband took me back I’ve had it done in a different province from where I live, long story. And we walked into the house and I heard this sound. Knuk, knuk, knuk. And I said, What What’s that? What’s that sound? And my husband said, it’s the clock. My dad had one of those old fashioned. And he said, Can you hear it? I said, Yes, I can. And he goes, “everybody Gael can hear the clock!” and I went, could you turn it down? So technical sound I could hear even now better. But voices, my sister sounded exactly like my husband. So there was that time to eventually I could start -male, female. And of course, I’d been a lifelong speech reader. So I tried not to speech rate, but so it was really everyone’s situation is different. And my view I had was up to 90% in a while I, but I’m bimodal. So I wear a hearing aid. You are, okay. So, and in some way. So if I have just my cochlear implant, it’s not so good. Just my hearing aid, it’s not so good. They have to be working together, because that’s what my brain has learned to do. So it’s kind of an interesting concept. So I was going to ask you how to think sound over their cochlear implant, but you’ve already told me that. Tell me a bit more about those sounds? What? Even today. So it’s been five years for you, Lauren? And how long for you Jill? For was that for us? I get I thought, all right. So …and I am five. So we’re all kind of in the same. Tell me what sounds you still find challenging, if any, or situations,

Jill Rivoli 16:37
the most challenging situations for me are still restaurants, or many people in a room talking at one time, which does, you know, happen with my job. I’m single, and I don’t have kids. And so I live by myself, which is wonderful. And as far as hearing goes, you know, I don’t have to struggle to hear anybody. But I do a lot of hiking and horseback riding and things by myself. And I saw the other challenging thing, is I used to lead horseback rides into the wilderness. And I don’t do that anymore, really, because I can’t hear behind me, even with my cochlear implant and my hearing aid, if there’s somebody on a horse behind me, they’re, you know, 10-15 feet behind me, I really still struggle with that. So. And I would say similar, like, voices are still challenging. I don’t Sorry, I’m kind of jumping around. But like you, Gael, my, like, sometimes my battery will die my hearing aid and I’ll be like, Oh, I just have my cochlear implant. But it was a little bit more of a struggle, but I can I can hear and or if I just have my hearing aid, same thing. It’s like really both of them together, what helps me and the the greatest thing. The greatest invention for me is this, you know, I stream directly to my hearing aid and my cochlear implant, and they’re joined together. So otherwise, like you were saying, Lauren, I, I can’t talk on the phone without it. Every time I started a new job, they say, Oh, here’s your phone extension. And I have to say, I can’t talk on the phone. And here, they’ve actually rerouted my extension. So it’ll go directly to my cell phone, which helps but but So to summarize, telephone is number one, I just still can’t do it. And then you know, restaurants, loud places with lots of people talking all at once is still very challenging.

Gael Hannan 18:38
Well guess what? The hearing people the people we call them they have a challenge. It’s, it’s a situation. What about you, Lauren? What sounds are difficult and then I really actually want to hear what have you got back? What is what’s just brilliant about what you’re hearing now. So

Lauren Deckard 18:58
I think, well so I live at the beach. So really, like the hardest thing is probably hearing people outside with the Wind, you can’t escape the wind with hearing aids anything like even hearing people have trouble with it. So I just have to like position myself because the wind is like always changing like Bayside Oceanside, so I literally just have to keep positioning myself around people. So I can hear that. The only thing that’s been harder, but kind of like we still be training my brain is like so obviously like I could hear fairly fine until I was 21. So I still remember I don’t I couldn’t name any of like the popular anything right now. But my brain still remembers all of those like 90’s one hit wonders and like Pink Floyd and everything that I used to listen to. So it’s still like you don’t have the same the same richness of sound like I remember from when I was a kid, so I think like the music is probably the heart is like I still try to enjoy it. But like, I mean, nothing exists to have that many channels to get the same acoustic as you know. So that’s kind of hard. And then of course, like, as you said, restaurants or bars, I just I’m not a big person to go out anyway. So I’m good. Yeah, this is just a tricky situation really

Gael Hannan 20:23
Yeah, music is something that when I’m listening to music, and it’s bimodal, this, especially once I got the tune, once I got it, you know, takes a minute, but I’ve got it. And in my cochlear implant slide, it sounds like that relatives will start singing along and off tone and off key. And it’s like, you’re listening to two different songs completely. And I know there’s things that this is an issue and that technology and all these new generations of technology, it’ll get better. But music is something that the end is a big grief for people losing music, and I just decided that I can’t worry about that. Too much more. What I… absolutley Yeah.

Jill Rivoli 21:08
So Lauren, I’m glad you brought that up. Because I just like you said, like old music that I used to know. I hear it. I know what it is new music. I like I can’t tell what’s going on. I can’t pick up a rhythm hardly I can’t. Like it sounds just like noise. Yeah. But it’s interesting that if it’s something that I recommend, or recognize my brain will go, Yep, we know what this is. And then I can hear it. But still not as clearly, like you said, as you used to. But I found that very interesting, somebody. So I primarily only listen to music that I already know, like streaming on my phone. If I’m in the car or some there’s music playing somewhere people will say oh, you know the song and I’m like, I can’t even tell you what that is or that’s a man or a woman singing I just, it’s it’s so interesting. Yeah.

Gael Hannan 21:56
If you’re like me, you’ve had to make some decisions about what you’re going to grieve over or what you’re just going to move forward. And some things will never be the same. And some things are better when we think you discovered your heads while you had some sudden hearing loss and happened quickly. And surprisingly, we’re starting to run out of time. And I want to know, we talked a bit about devices. And it sounds like you do do use streaming. I personally right now I’m streaming through my mini mic and my phone and my this and my that and I’m getting an upgrade, I am a cancel on all that year, and I top it to my year, I’m getting an upgrade shortly. And then I’ll be able to stream everything through the phone, which will be great. What devices do you find really useful? For hearing with a cochlear implant,

Jill Rivoli 22:51
the only thing I use is the phone because I honestly all that other stuff. It’s very confusing and overly complicated to me. It’s like I have the TV Streamer that I have tried to connect like five different times and that just doesn’t work. And so I just use subtitles for my TV, I would like to be able to do that. And then the Mini Mic I know I think that’s something that I should probably revisit. But you know, the the ability to place it at the far end of the room and hear people better at that side of the table. But I haven’t so honestly my phone is really the only device that I use I should I should explore that more Lauren, do you use utilize those things?

Lauren Deckard 23:35
No, they when I had my hearing aids they, the hearing aids, not cochlear they tried to like sell me up and I had like a 10 different devices or anything. So like, I was like this is… I’m just gonna function. I don’t need to rely on technology this much. But the only thing like you said is the phone like I thankfully can use. Like if somebody calls me for the most part, I can understand them on my on my cell phone. And I think it’s so cool because nobody else can hear them cutting or can hear like the voice. So I feel like a super spot because I can just like hold it over here. Or I’ll forget I’ll be like in Target and like I’ll leave my phone in different aisle and we’ll be talking about something else in a different it’s a whole. But yeah, thank goodness for that like Bluetooth technology they have because I its so incredible, so incredible

Gael Hannan 24:24
it’s amazing and it will only continue to get better with devices. So I the mini mic I think in your work on the ranch that was helpful in restaurants. I clip it on to your partners or your communication partners thing, but it just means I have to go into different mode. So let’s just I just gonna just ask each of you to sum up for us. What do you regret in getting a cochlear implant? Are you happy? What final words what would you say to someone who is considering a cochlear implant?

Jill Rivoli 25:00
I would say, you know, research and know what you’re getting into because I have heard stories of people who go through it without a lot of research and then they’re not that pleased with the results on the other end, I am I just I would just say research know what you’re doing, talk to your surgeon talk to your audiologist talk to other people who have them. Um, but for me it like I said, it has made all the difference in the world for me to be able to, you know, hear birds and like you mentioned, you know, my horse eating hay or even my dog you know, breathing as we’re hiking next to me. So I would say just research and, and then once you get it, you have to work at it. That was the other thing is like, you don’t just get it and turn it on. And you hear perfectly like I spent hours every day trying to retrain my brain and practicing and I still will sometimes take my hearing aid out and just try to focus on my you know, implant because I think I just can continue skill building on that side. So it’s, it’s not easy. But to me, it’s very worth it. Yeah,

Gael Hannan 26:10
I would hang on to those final words its well worth it. And thanks for that. Because it what you went through is so true. And and what and what about you, Lauren, what would you say to someone considering getting a cochlear implant,

Lauren Deckard 26:21
I think the same thing I mean, like, I just care so much about I mean, anybody can cut you open, but like I, as long as you just have to, like, I totally believe in like feeding energy from other people, right? So like, I met with a surgeon. So I was like, don’t like I can’t do this, I’m never gonna be able to do this. And then finally, when I felt comfortable again, when I met with the other guy, I was like, Oh, my gosh, you get that. So just like you said, like, just find somebody just be- you just want to be comfortable. And I definitely like I am on the other side of the spectrum, I’m scared of research. I just kind of want to be like, like, I just want to trust the doctor, just tell me what I need to know, I’ll do it. I just like I don’t know, might be like self empowering or something. But um, yeah, I think just like, as long as you feel comfortable with the person, you can like, I don’t want us to call it shop doctors. But I mean, just find someone that you feel comfortable going under with and who can really like, luckily, my surgeon did walk me through the process, because I had those like PT issues and the vertigo stuff. So find someone you believe might be able to help you walk through that just in case. But I mean, for the people who have nothing to lose, like if your hearing is really that far gone, like mine was like, Just do it. It was the best decision I’ve ever done. And I’m so thankful that I can just communicate regularly. And I don’t feel I don’t feel lost. I mean, when I was 25, I mean, I had having a son, there’s no time. I mean, I would love to learn sign language, and it would be great. But having already been hearing, it’s like, I just can’t do that. And I just I’m so thankful that I went this route and can just function again.

Gael Hannan 28:01
Fantastic. And I want to thank the two of you for joining us and discussing it because it’s showing both sides of the coin. And when you’re used to hearing when you’ve had your hearing and you lose it. Yes, you’re going to do what you can to get it back. So. So thanks very much for joining us this week and hearing and we look forward to talking to you next time. If you have any questions on Gael Hannan, you get in touch with me at HearingHealthMatters.org. So thank you very much