Ubuntu – Hearing, Language, Communication, Connection

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Bianka: Hi there, and welcome to Ubuntu, Hearing, Communication, Language, and Connection. The podcast where we explore the power of connection, shared experiences, and overcoming challenges related to hearing loss. I’m Bianka, a mom navigating life with my son Oliver or Oli, who uses bilateral cochlear implants and the founder of Olipop ToyShop, where I create tools and resources for listening and language development.

Karen: And I’m Karen McIver-Lux. I’m an audiologist and LSLS Certified Auditory Verbal Therapist and co-founder of Thrive Together, a private practice in Toronto, Canada. Where I work with individuals of all ages with hearing loss and their families. So I bring Both professional expertise and personal experience as someone who uses a cochlear implant and hearing aid.

Bianka: We’re so glad you’re here. This is a space for honest conversations where we share insights, stories, and our journeys with hearing, communication, language, and connection.

Karen: But we’re not here to offer expert advice or, um, tell you what to do. Instead, we’re sharing our experiences. Our challenges, our joys, and the many ways that we navigate the world.

Bianka: So whether you’re a parent, a professional, someone with hearing loss, or know someone with hearing loss, or just curious about communication and connection, you’re welcome here.

Karen: Pull up a chair and join us because I am because we are

Bianka: All right, welcome to another episode of Ubuntu. Hearing, language, communication, and connection. And we are so excited to sit down and chat with one another and chat with you all today. Hi, Karen. Hi, how are you?

Karen: It’s good to see you. Sure. And to see everybody else too, so welcome. Thank you very much.

Bianka: So Karen, I know that we got to speak last time so much about the beginning part of our journey and I think today we’ll just kind of continue that and see where it takes us as well. And I think what makes this podcast so unique is that you and I can give an experience of Myself as a mother who has a child, I made the decision or the choice, I suppose, with my husband to implant our son and go through this journey. And then you as an adult who now has a cochlear implant as well.

Karen: As well as, yeah. So many families. I’m excited to share that, um, process because I learned a lot from parents, um, about what it’s like to get a cochlear implant before I got mine. And boy, was it a lot of learning. So I would love to open this up by hearing your story first.

Bianka: Okay. We can absolutely do that. So I think that. I was kind of thinking about sort of where we didn’t really chat much about the hearing aid trial that we sort of started at because obviously in every country I know the rules are different, insurance companies are also very different as far as having a hearing aid trial. So we were very lucky in that the audiologist that we started with did give us a, a set of hearing aids to use. So we didn’t actually have to purchase them, which I thought was standard, but I have since learned that many families actually have to purchase hearing aids before cochlear implants, which that was a bit of a shock because that’s another expense that we thankfully didn’t have to factor in. Yeah. So we were very lucky in that Oli did receive access to sound with the hearing aids, so When we switched them on, we got to see that little face, those big eyes that just turned when he got to hear it was, yeah, it was An unbelievable experience, definitely, for sure.

Karen: What did he hear with his hearing aids?

Bianka: We never did another audiogram, so I don’t actually know how much access he had, to be very honest. He was got the hearing aids at the end of February and then we went into lockdown. Um, because it was COVID time.

Karen: Yeah.

Bianka: Did I loose you? Oh, there we go. We’ve just had a bit of a frozen situation here. So we went into lockdown and then the only time that we really went back to the audiologist was all masked up. So that we could just get new earmolds made every two weeks because who knew a baby’s ears grew so much, so quickly?

Karen: I hear that!

Bianka: So I will say that the hearing aid, the experience of that switching those hearing aids on the first time was unbelievable. It was, um, I mean we just all cried in the room and he just looked at us with these big eyes and he His whole, like, being softened, if I can put it that way. Um… I know that we haven’t often spoken a lot about what I do outside of this world of hearing, but in my other profession, I work a lot with children, and one of the biggest things that I saw with Oli after he had access to sound, even with hearing aids, was his toes relaxed and it was so unbelievable when his sound he had sound his toes relaxed and then in the morning when he’d wake up his toes would be all curled again And that’s the fight or flight response. That’s a very like stressed out response to be like this versus you relax.

Karen: Yeah. So an interesting observation. That’s amazing because I remember getting fitted with my first set of hearing aids because I was four years old at the time. And because I could hear some music, I, my mom had me and baton, which is a music ruling, you have a baton in your toilet and And I could hear some, something I just didn’t really, I couldn’t connect it with what was going around me. What was going on around me. So I, I knew that I was expected to go to the dance studio and match all the movements, all the steps, all the twirls that all the other kids in my class did. And um, when I, the day that I got my hearing aid fitted to me for the first time, Was actually the day that my, uh, the rehearsal for the baton year-end, um, celebration would be. And, um, So I remember getting fitted and seeing the room glow in a golden yellow colour because for me Sound was colour. Like it just made the world glow in a richer due of whatever colour that was around me.

Bianka: Yes.

Karen: And um, yeah, and it was just, I remember being in awe. Um, and then running outside. With my mom, and my mom had, back in those days, an old granny plastic cap that Would keep the hearing aids, you know, dry from the rain. Because it was raining hard that day. And I could hear my mom’s crinkling sounds. Of the, the sound of the plastic being touched as my mother was, you know, what’s going on, Karen? And then we got on to the subway. I do not remember the subway. My mother does because apparently I screamed the whole way. And I must have been scared. I don’t know. But, um, I screamed the whole way, then got off the subway and walked to our car. And our car was this, um, An old car, I guess it was, um. Ford, like one of the big, big cars. Beautiful, shiny, teal, blue car with blue interior leather. And my mother said, and it was just, it just seemed that every colour was glowing. And um, and then my mom said that on the way home, I was cooing and then I would laugh and then I would say something else and then I would laugh and laugh and laugh because it was the first time I could hear myself. Um, but the most amazing moment of that day for me personally was, um, being at the rehearsal, getting set up. And then all of a sudden the music to our dance started. And it was the first time I heard the singer and it was the most beautiful song and it was called raindrops falling on my head. (singing) Rain drops are falling on my head. (singing) And I just was Wow. And I just stood looking around while everybody else is dancing. And I just stood there. I was just like, huh? So excited and just was so happy and moving around and all the mothers in the audience, were crying. Because they had never seen me. They knew that I had gotten hearing aids that day and they, they could see. You know, that look of wonder that you were describing with Oli. And I bet you I looked a lot more relaxed, too. And you know, I have a picture of me in my dance costume with the baton, a picture of me before I got the hearing aids and a picture of me after. And you can so see the difference. The whole body is relaxed, as you said, and is more in my face. You can just tell. That I am more connected. The life around me and I can’t describe it. And so one of my first lessons to interventionists when I’m training them to do the work that we do Is it’s not about looking at what the child can or cannot hear. It’s about looking at the behaviour of the child. What? They got their hearing technology and looking at their body language, looking at their, their being, their, their essence, how do they eat, drink, look at, feel, walk, life after they get fitted with hearing technology. And if you see the shoulders are a lot more relaxed, And joints? A lot more relaxed. Do you know? You’ve got some good outcomes. Link(fix there).

Bianka: And, and that is such a beautiful, I think such an important note, I think for maybe more practitioners and practitioners, but parents also to realize is that body language, because it, if I think back now, As soon as he had a bit more access to sound, his interactions with us changed so much. Even at three months old, those eyes were so big and Previously, I want to say that it was almost like he was looking through us, where now he was just sort of, he was really, he wasn’t looking, I mean, he was still standing our face and he’s only, he couldn’t, you know what you mean?

Karen: It’s like, he’s looking through you because it’s just, He’s seeing you for the first time. Different dimension, really.

Bianka: Yeah, so it was, it was It was really lovely. I think, I think, um, one of the things that we often, my husband and I, cause my, my husband was with me, um, we had the audiologist and my mom was there as well. Thankfully she was the one going, You need to take photos of this and you need to take videos of this so you can see how far you’ve come one day. Um, because we were both just crying through those days of appointments at that time. We, as she switched on the hearing aids, she did one side at a time. So his right ear was severe, where his left ear was pretty much profound and there was even no reaction. In the initial testing so they put right here on first and um, the one of the strange things that we didn’t realize at the time but only realized a little bit afterwards was How much the audiologist was speaking, um, when the switch on happened. So, and I know that that was part of her job, but in hindsight, both Daniel and I were like, If he heard her voice, her voice was the first voice he heard, and as parents we were feeling a bit, um, vulnerable about that fact, if I can put it that way. Um, and our, and our cochlea switch on was very, very different. Um, but it was, it was just, I think these are the feelings you go through because you are feeling so has my son ever heard me say, I love you. Have they ever heard any song I’ve ever sung to them? And now he’s got this access to sound, but I, my voice was not the first voice he heard. Um, so it was a bit of a mixed feeling, uh, situation that we went through, if I can put it that way.

Karen: I’m so glad you talked about it. Um, because I think, you know, um, I think that’s a very, very valid point. And I think audiologists, because we’re so excited about, you know, um, getting is this child detecting sound and we know that we we know which sounds to produce and we know what frequency range these sounds are and we want to check their auditory access, but that’s a really good point because, um, That sort of happened to me when I got my cochlear implant too. I’ll get to there in a minute. But, um, uh, I went to an activation. With one of my recently year and a half now. But when she was seven months old, she got her implant activated. Which is great for Toronto, Canada. And her parents, um, I told her parents, you know, Um, I want you to think about what you want to say to your daughter, you know, the first time she is activated. And they said, oh, no, no, no, we don’t want to talk. I said, no, no, you do the talking. And, um, and I… I kept saying, why? Well, you know, our voice is not very strong. Um, and this is the feeling that they came into because they both had hearing loss as well. And they used sign language to communicate and they were a little bit shy about the quality of their speech. To me, I love everybody, no matter what it is. And if you are constantly talking to your baby, which they were, While she had her hearing aids on, I said, your voice is the most familiar and the most precious to her. Please don’t put that on us because we don’t have that connection. And I’m like, you think so? You think so? And so I had to, to convince them, sell them on it. Um, and then I talked to them about it again and the audiologist that works with, that works with the family said, Um, was also very careful about that and she said, you know, I want you to be, you are going to be the first voice. That your baby says, so who’s going to speak first? And the parents were like, we want Karen to, and I just turned around and I said to the audiologist, please don’t, please don’t. And she says, I hear you Karen. And so we just waited. We just waited. And when she was turned on, she had already heard The sound of the environment and her eyes just went, her head stopped. And I looked expectantly as a therapist.

Bianka: Mm-hmm.

Karen: And they called out her name and um, the father said something in his native language was French and Hebrew and, and, uh, I just was just, and she was just smiling and looking and localizing and. Localizing meaning, tuning to his, his voice. And, um, and then the mother would start talking and, you know, and then… And then they were like, can I say something? And I was like, okay, now I can talk. And they said, okay, now I can talk. And then, you know, the child looked over at me and I said, hi, baby girl. And, you know, and, and that was that, you know, but for me that first moment is so precious and I think it should be the parents.

Bianka: Yeah.

Karen: So, yeah, that’s another, um, really important piece of wisdom, I think, that you just shared there, you know.

Bianka: And I, and I will say that I completely understand the absolute excitement, the pure heart and joy that this audiologist was in the journey with us. This is, you know, but it’s just something noticed. Um, So, and after that, interestingly enough, wearing the hearing aids is a whole different ball game to cochlear implants now that we’re on this side of the journey. Um, breastfeeding with hearing aids is a whole different journey. Just because they constantly make that noise when there’s, um, when the baby’s lying down and feeding. So that was, but we had this ritual every morning because obviously we’re in lockdown. My husband wasn’t working. I wasn’t working with the three of us. And we would sit down and we put the hearing aids on and then we’d click them on at the same time. And it was like switch on of the hearing aids every single morning. When they went on, his face would do the same thing. He would just get so happy and just look around and So we made that for it over and over again every morning that we put them on. So it was um, yeah, and then Once we had our hearing aids, because we were in lockdown, we were told that once he’s six months old, then we can see an ENT and then we can look and see if he is a candidate for cochlear implants. So what happened in the middle of COVID was obviously, I think we’re beginning to panic a little bit because we had no idea what was going to happen. This was March, you know.

Karen: And, I can’t imagine doing this during COVID. Wow. Yeah.

Bianka: So thankfully there was another little mom who I spoke about on the last podcast as well, who’s Oli and her, her daughter and Oli had the same due date and she came two weeks before Oli, a month before Oli. So two weeks before the due date and Oli. And she was also diagnosed, uh, profound bilateral hearing loss. And she, she and I were the ones doing all the calls to overseas to find out. So what’s the optimal age to actually implant and what’s happening. And we were both the same cochlear implant team and they then ultimately made the decision to fast forward paediatric implantation and put adult implantation on hold. So, we were still with another audiologist. And you know how this goes. My mom knew someone whose friend’s son was implanted and that mom reached out to me and she said, there’s only one surgeon who can do the operation. You need to go and meet her. She’s who did our son. So we lived two hours outside of Cape Town at that time so every time we came for appointments we had to really try and organize everything and Oli hated the car so it was always quite a stressful packing up and going. So we made an appointment with this. Uh, ENT absolutely loved her and but what that meant was we could not stay without audiologist. We had to, cause it was a completely different, um, team and also a different brand. So in the time, from the time that we had his testing done at six months. And I got that phone call in the ward saying, okay, it’s been scheduled for two weeks from now. We had not even met our audiologist yet. She then drove the two hours from where she lived to where we were to meet us for the first time a week before the surgery. Sit with us. I know, an absolute angel. She sat with us. She explained everything. She bought the cochlea. She bought the internal device. She met Oli. She… It was like just, it was like this, just meeting a friend and just to explain the whole process to us. The surgeon was also phenomenal. She, um, I think must have studied everything. So I’d get these messages like. Five o’clock in the morning and then she’d say, please take a photo of the outside of his ears and then I’d do that and he didn’t have much hair at that point so she could see all the bones and so on. And she would ask all these questions and so it felt like we were, we were going in ready to do this, if I can put it that way. Um.

Karen: And then the morning she involved you in the process. They involved you in the process by including you in, um, Getting an idea of what she’s looking at.

Bianka: Yes.

Karen: For example, taking a picture of his ears. She’d do that. Why would she do that?

Bianka: No idea.

Karen: Well, then a parent might ask. Did you ask your surgeon why she would do that?

Bianka: I asked her and she said something about the bones. Um, you know, when, how much went in, I have no idea, but I, I don’t, she obviously was looking at, I believe it’s the temporal bone that she was, um, Looking at and just looking at where she was going to place the implant and she at one point even had me measure something. So, you know, My measurement, obviously she redid all of that. when, she got into theatre. But it was such a, like you said, she was involved. So… Because ultimately after that phone call is saying it’s in two weeks, like I said last time, we definitely had moments of like, okay, now it’s actually happening. When he was three months old and we’re being told he could potentially be a candidate and then we’ll do a surgery and give him a cochlear implant. You’re going, it’s in the future. Nothing to worry about. Now that. Well, there’s something to worry about. So we, we left very early that morning to be at the hospital at six, so we had to leave at four in the morning to get up at six. And I will say I feel like the most stressful part of that entire operation is withholding breast milk from a six month old baby. Who’s used to being able to feed on demand. That’s probably the most stressful. So, yeah. You know, he’s used to being next to me and when he’s next to me, he can feed whenever he wants. So that was… That was quite difficult. And then obviously because it was COVID, I had to go into the hospital on my own. My husband wasn’t allowed to come with me. Yeah. So we, we went in, um, the, the hospitals were empty. It was a Saturday morning and the surgeon was quite concerned again because we didn’t know the repercussions of COVID. This is May 2020. It wasn’t even bad yet, you know, in that sense. So she had actually rented, she was using her day hospital, but she’d rented a separate cleaning team to first go in there and clean and make sure everything was absolutely Yeah. So, the… I think that, oh, that he didn’t, my, Oli didn’t ever take a dummy, um, a pacifier. And that day, that’s what I was trying and finally he took to it. And then as we were going into pre-op, one of the nurses obviously thought she was going to be funny. And she walked up to him and she pulled the dummy out of his mouth. And he, and to pull it out and, you know, play a game. And he started screaming. And so I unfortunately couldn’t settle him until we stepped into the theatre and I got to hold him and. It’s not, as any parent who’s been through this, not just with cochlear implants, watching your child sort of go limp in your arms is not a fun experience. Um, and this, I was, at that point, I allowed myself to cry because now he’s okay and I can cry. And the surgeon wanted to give you a hug and she’s like, I can’t, I’m already scrapped you, you know, but I’ll see you on the other side. And as I walked out because my husband Daniel waited for me in the parking lot and I was just going to be in the parking lot with him. Uh, the audiologist arrived and so she actually was with us. She said a prayer with us and. She went into the theatre and she stayed there and between her and the anaesthesiologist they actually sent us messages about every hour. So he was Bilateral implantation was almost eight hours. So it was a very long surgery. Yeah. So we were warned she’s very meticulous and that’s alright, it was good. We were staying in my mom’s friend’s apartment just down the road so we actually did leave and I got to see my mom for a bit and then we came back. Um, but again, you weren’t allowed to be just be driving because if you were driving, you had to have a permit to say why you were driving. And then I think the best thing that could have happened was another family With a daughter who has cochlear implants came to the parking lot with a bag of goodies and they were just there to check up on us and see how we were doing and To tell us that in a year from now, everything will look so different and this will all be worth it. Yeah. So, Ubuntu, that’s the community that we were talking about and the reason that we are doing this podcast.

Karen: How did that make you feel to have a child with a mom come to you with a bag while your son is in the hospital? Like, how did that? What did that do for you?

Bianka: I think, and as you said earlier, because of the circumstances of COVID, it meant more than anyone could ever have known because And they bought us little energy drinks, some magazines and chocolates. But, and then they, we stood there social distancing and pretending to hug and there, it was, It made us just feel like we weren’t alone in the process, you know, um, that, and they showed us videos and they just continue to reiterate that this feels so hard right now, but in a year from now, things will look so different. So it was, yeah, as I said, the Ubuntu thing. It is totally about community and connection. And yes, every single one of our journeys looks different. But being able to converse with someone who’s been through a similar journey is just a, it’s yeah.

Karen: Yeah, and you can see a little bit of that outcome too, you know. Um, wow. I would have loved that. I would have loved that. Even as an adult, um, because, uh, you know, um, We all know, I’m an audiologist. and my area, my passion, my living is, my work is with the oral rehabilitation part of working with any individual of any age from time of diagnosis to from there all the way to, you know, for some people they get their implant in their 90s and, you know, I’m there. I know the process. I know how it works. I know what’s involved. And um, but for me getting an implant, it was, it was, it was very much like the professional part of me left. It was gone. She was gone. Um, the audiologist went on vacation to Bora Bora somewhere. And there’s the personal me, the one who’s desperate, who’s, and I’ll be honest, um, it took me a long time to come to the decision of making to get a cochlear implant. Um, and first of all, it was because I didn’t qualify or I thought, you know, when I was working, the first I’d The first time I worked with a family who was in the position of having to consider a cochlear implant was when I was in graduate school. Learning to be an audiologist. And we were with the great Carol Flexer. Uh, she was my professor, my advisor, and what In my opinion, I think she is one of the most outstanding paediatric audiologists in the world. And I’m not biased. I learned so much from her and You know, we would catch this baby’s hearing and we would see severe to profound hearing loss and we would talk about hearing aids. Of course, and um, but then, and then we would talk about cochlear implants and when Carol, or Dr. Flexer, tells me to call her Carol, so I’ll call her Carol. When she was talking with the family, she would mention In all her greatness, all of this positive, the future is wonderful. It’s never looked as good as it looks now and we have even the option of cochlear implants and the parents the news was delivered beautifully, could not have gone better. The assessment was phenomenal, could not have gone better. But the parents, um, had this look of shock. In horror and, um, terror on their face, faces. And I, I was thinking, I was shocked that they were, they looked horrified and that they looked resistant to it and I, I couldn’t understand. Hey, why would you be resistant to this? This is, this is an amazing opportunity. I, I, oh my gosh, I would, you know, if I were that baby, I would love that opportunity. Okay, but I did not think that I was a candidate for a cochlear implant. Because I did too well with my hearing aids. And well, I should have because I spent so many hours in therapy, so many hours with my mother on my tail because back then with the degree of hearing loss that I had, The closer you are to your child, the easier it is for your child to hear, the easier it is for your child to learn to listen, and to speak, and to learn how to speak and then speak and then read and then write. Like everything was an active process for me. Nothing It really came naturally for me. I mean, it had to be taught to me. And so I was so proud of all those times I would go into the booth and the audiologist would assess my hearing and then he would do speech perception testing, you know, like say the word base, say the word mass, say the word, I know the list now.

Bianka: Yes, you do?

Karen: Yeah. But I was so good, I got 63% speech perception, which is incredible for my degree of hearing loss, but that’s with live voice. That means I got 64% of the words she said correctly, but I had to think about it. I had to work hard and I would ask him to wait and I would go through, I would take a recording of what he said in my mind and I would play it over and over and over again. And think about what it could best resemble. You know, was it, um, fat? Was it, was it. You know, and I’m, I’m analysing every little bit and making an educated guess. Is that what listening is like in the real world? No, it is not. But, I did so well in the booth. And they were… And back then, um, and it still is the case right now, you know, your speech perception, your speech discrimination scores in the booth are what were the key variables that would influence whether you were a candidate for a cochlear implant or not? And so then I started working as an auditory verbal therapist, seeing lots of kids with cochlear implants. And going to the hospital and meeting the paediatric audiologist on the cochlear implant team and then the audiologist said, Oh Karen, she said, what’s your hearing loss like? So I described it to her and she says, Yes. Yes. To, you know, to impress her. And then she says, well, have you ever thought about getting a cochlear implant yourself? And you know what happened? This reaction. Holding my chair back and looking at her like Yeah. And she, she smiled. She says, what was it? I don’t know. Um, oh, nobody’s ever asked that before.

Bianka: Okay.

Karen: And she says, what are your thoughts? Why would I want to, I’m doing so well and I work so hard twenty-six years, twenty-six years of my life to be able to hear and talk the way I’m talking right now. And that includes the time that I didn’t hear. Because that was a lot of work for me. And I’m not good enough anymore. That’s what came into my mind. I’m not good enough anymore. And she says, I wouldn’t look at it that way because I would look at it as you’re good enough to do it. And I said, okay. Okay. I said, I’m going to have to examine them. Okay. So it took me a couple of weeks. Um, no it didn’t. I was twenty-six and it wasn’t until I was twenty-seven that I went for the investigation.

Bianka: Okay.

Karen: In Toronto. Great program. And the, um, they tested me and they saw the 64% live voice. Speech perception scores and they, they then did recordings. Which, in which you don’t do as well. And I got 43% and they stopped the test. And this is without hearing aid. And they stopped the test and they took me into the room with the surgeon and the surgeon said, you’re not getting the implant. And then he got upset. Because nobody tells me whether I can have better hearing technology or not. Nobody gets to take that choice away from me. And so I said, well, how do you figure? And he says, well, he says, Karen, you’ve got your amazing speech perception scores and, uh, you know, we have 300 applicants a year. Many of whom are way worse than yours and you need to prioritize them over you and you don’t meet the criteria. Essential. And then he gave me some other information, which. I don’t want to go there, but it compromised my trust in the surgeon. And he was just really trying to get me out of the room because I was being very resistant to leave. And, uh, so I guess one, uh, other message is if a client is being resistant, just ride with them through it. Don’t give them information that is not true to get them out of the room faster because chances are they’re going to know. And you didn’t know that I was an audiologist. (laughing) So, um, but, you know, he meant well. He really meant well. So I had to learn from that experience. You know, not everybody is perfect. You know, and surgeons sure can’t be because they’re under so much stress to fundraise for cochlear implants and to get the surgeons, you know, trained and to deal with so many people who are desperate to hear. And you just, we just don’t have the resource, you know, but I get it. So please don’t go. Yeah. I love this guy. Okay. So, um, but, um, there’s lessons to be learned everywhere. And so I spent the next two or a year and a half Traveling around the world, well, traveling to the States to, to, to push, uh, for my, for my, to fight for my choice to be implanted. Um, because I want the option. I want the choice. Don’t tell me I can’t have something because then it’s going to make me fight for it, you know?

Bianka: You sound like your mom, a little bit.

Karen: A little. So I, I went to the U.S. and went to one of the cochlear implant centres down in, um, New York and I had a test and they did the same thing they did in Toronto. And I was so shocked because I was expecting more detailed testing, um, but I understood why they stopped the testing. But I was still shocked that they cut it short with me having spent all this money to fly there and all of that. So I was so shocked that I got on the plane and I and when you get on the plane and you’re way up in the air, you’re like, well, you should have said this and well, you could have done this and you could have done this and you could have done this. So, um, as soon as I got back in Toronto, I went running home, emailed the head of the program saying, well, you didn’t do this, didn’t do this, didn’t do this, didn’t do this. You need to reassess me. When’s our next appointment? And uh, so we went back down there and it was in nineteen almost 1999 in the winter time. So after that assessment, he said, okay, I will approve you for a cochlear implant in your right ear. This is not even my implanted ear. But anyway, more on that later. But, uh, he says, I will reluctantly approve you for one ear, but he says, and, and he says, I know the outcomes will be outstanding with you. He says, if you can do a lot with this, I can’t imagine what you will be able to do with this now. And I said, well, he’d had it. And I said, when can we book it? And he said, well, he says, I need you to think about this for three months. I need you to think. And, you know, I’m so glad he told me this. Really, I don’t regret it. Just give me the choice. And I’ll go home anyway. Um, in, in the second month I found out that I was pregnant. And so I decided to go on and have my baby and then my baby needed my attention. Um, she also had trouble learning to talk and learning, not to talk, but to use spoken language. Um, she was what we call now a gestalt learner and we can talk about that another time. But, um, she needed to be in therapy and I needed to work with her and learn from her and I learned so much from her. Um, she made me a much, much better therapist than I could ever hope to be. And I’m so grateful for that experience, but it took six years. For me, to get to the point in her intervention and her outcome that she would feel that I felt that she could be on her own and I could go and get myself an implant. Um, and then, uh, while I was working, there was a client who had exactly the same hearing thresholds. Exactly the same hearing thresholds as I did. And the same hearing aid, the same performance, and he got a cochlear implant. Well, he didn’t have the same performance I did, but he was the same as me as far as I was concerned. And he got his implant and I saw him bloom, blossom, fly like a rocket to outstanding auditory functioning, whatever it was that the implant gave him, it was extraordinary to see the rehabilitation process, um, that uh, he went through and I was observing and learning from it. And then after three months, um, he started getting infections. Um, he couldn’t wear the magnet or the implant and then it, ah, six months, eight months, ten months later, ah, it turned out that his body rejected the implant. Um, he just very, very rare case. Um, and I was, and he was so devastated. I was so devastated for him that it took me It takes a lot of time to get over that fear, you know. So this is 2007 and um, and I thought, oh my goodness, I’m too scared. I’m too scared. What if something goes wrong? And I’ve lost a perfectly functioning ear. And, um, I was scared. And, um, and at that time, I decided, what is it going to take for you, Karen? You feel comfortable getting this implant because you know failures are going to happen.

Bianka: Mm-hmm.

Karen: You cannot, you cannot control that. It’s beyond your control. And you need to be comfortable with the fact that it will fail and you need to have no regrets. So what’s it gonna take for you to make sure that you did everything you could in your power to make sure that a failure wouldn’t happen? And if it did, then you have no doubt that you did the best you could. And you know it’s not the end of the day. I’m a professional. Okay, cochlear implants plans fail, I know what needs to be done next and I can handle that. I’ve had Clients who have had cochlear implant failures and they want to be explanted and re-implanted. What’s a cochlear implant failure? A cochlear implant failure is either a hard failure or a soft failure. A hard failure is you wake up one morning, your processor is working great, put it on your head, but the internal component is not working. With the outside component. And so that’s a clear, uh, hard failure of the internal component of the implant. And so you go in, you explant it, put in a new device, and then usually everything is great, okay? And they say you expect an average lifespan of a cochlear implant is ten to twenty years. If it’s longer, great. If it’s shorter, great. We’ll, we’ll deal with it, you know? Uh, so I knew that and I expected it. And then there’s the soft failure, uh, where there’s a lot of distortion, there’s no clear evidence that the implant, that there’s something wrong with the internal component, but It’s not functioning the way it should, and those are much harder to identify. And so I’ve had many clients with soft failures, those really hard to identify ones. And so I was getting good at recognizing those, the risks that are involved with getting an implant and what to do and, you know. Um, so my, um, my parents were listening to my concern and my father said to me, Karen, he says, I want you not, I want you to be able to go somewhere else to get your implant outside of Canada because he says you, uh, You’re so well connected with the cochlear implant centres in Canada that I want you to have your privacy, which was really important to me. And uh, I, he offered that to me. Um, for which I’m truly grateful. And uh, so then it was urgent shopping. And I found a surgeon. Um, I don’t think she will mind me. There are amazing surgeons all over the world. Absolutely. I, I haven’t met a surgeon that I don’t love. But, um, this one that I chose was Dr. Aschendorff. Professor, doctor, professor, professor, professor. Dr. Antjie Aschendorff in Freiburg, Germany. And I chose her for many different reasons, um, because she was so easy to talk to. And she, I was introduced to her and she just sat down with me and, um, this is, so tell me what you, what you’re looking for, what you want. And why? And it was just like I was having coffee or drinks with an old friend. And, um, it was so easy to talk to her. And I said to her, you know, I said, what I’m looking for in a surgeon is I know someone who won’t abandon me. When it gets tough. And she said, what do you mean? What does that look like for you? And I said, well, I said, I know cochlear implant failure can happen hard. And I know that they’re pretty scary for a lot of surgeons to deal with. And I said, I just want to be in a position where if something happens to me, A mistake is made. A device is not functioning well. Please, please don’t abandon. Stay with me. And I said, I’ll be with you. I said, I’ll be the nicest gal ever to deal with. And she says, absolutely. I won’t, you know, like, she was able to reassure me and it also made sense to see her in Germany because my husband’s family lives in Berlin. And they also didn’t know anything about hearing loss. They didn’t know anything about cochlear implants. They knew a little bit about it, but Um, they just knew that I couldn’t learn German with hearing aid. So they spoke as much English as they could with me and I spoke as much German. They, they loved me. And I knew that if I went to them, they wouldn’t be saying, can you hear me? Are you okay? What’s the feeling? Are you able to hear? My parents know too much. I wanted to be away from them and also I had families on my caseload. Who was so, um, emotionally invested in my process as well. Um, and I said I need to be away. Far, far away because if something happens, I don’t want anything to to negatively impact their own journey, right? And uh, back to me, the surgeon, the hospital, um, then we had to figure out how were we going to implant me and map me. And follow up with the mapping because back then the rules were if you’re implanted elsewhere you have to be managed by that particular centre. You know, you can’t just get implanted and then go back to your home country and have the audiologist who didn’t want to implant you in the first place to map the device. So, um, we were able to arrange, the surgeon was able to convince Cochlear Germany to sell me the software, the fitting software. Which is you hook up the implant to the cords and to the computer and then you have the mapping software on your computer. So they agreed to sell it to me. Um, and because I was an audiologist, I said, you have to promise you’re not going to map yourself like crazy. I said, absolutely. I won’t touch it. Um, I even took training in how to map, but I said, I won’t touch it, you know. And, um, and the audiologist or the engineers, we call them in Germany, um, actually flew over to Canada with the software in their hands and they set it up on my computers and we Skype to remotely do this programming. They could see my responses and they took over my computer. Um, I just would give them a code and they could take over my computer. And they had control of the mapping software. I hooked myself up. And um, what a blessing that was because it ended up that I did have a soft failure and required a lot of mapping sessions. Almost every two weeks, I needed to be with someone to remap because the sound quality was so distorted and it was painful to wear. And those are some signs of soft failures. And um, I can also give a shout out to an audiologist in South Africa who also did remote mapping for me. So I was the only private client in the world at that time. Who had remote mapping capabilities, which is a dream come true. And I made, I made use of it, believe me. And um, so I think I will say one of the emotions that I had the night before the surgery was saying goodbye to my ear. Um. Because I felt like I was giving up on my ear. It worked so hard for me for so many years and hearing everything. It needs something new, you know, (mouthing sorry)

Bianka: No, no, don’t be. This is, this is the journey.

Karen: So I had a good cry. And so thank you for everything. Yeah, I had to be emotionally ready for that. But it took me so long to get the invite because I had to be Okay. If something would go wrong. And it did. And it did. And I knew that it wasn’t a surgeon. It wasn’t this. And she didn’t run away. And she didn’t run away. And how lucky I was.

Bianka: Absolutely.

Karen: How lucky. And I, yeah,

Bianka: I think it’s really, you know, the, your, your process to get to where you went to, and the same as what we did, I think you bring up a very important point for parents as well, is that You have to also be realistic in that it is a technology and it’s absolutely incredible. But as you said, there is a chance that it can fail and you, you can only be. You can hope for the best and you can do everything right, but things can still go wrong. And I think. Probably one of the most detrimental things in leading up to the journey is to the surgery itself was going on to Google and, you know, Googling all the things that could potentially go wrong. Having said that, the surgeon I think did prep us, you know, with the idea that there are cases where unfortunately something can go wrong. And um, but I don’t think that you had your year with you for so long compared to us who had such a short window in which to make that decision, if I can put it that way. We could have waited as well. But the way that you had gone your whole life and as you said worked so incredibly hard to do what you were able to do and do everything you did so well. And also understand the outcomes of cochlear implants. You, you, because of your profession, you know exactly how it works. Um, so I think you saying emotionally ready is such a valid point and it’s given me some insight into parents that I’ve also met who, who have really resisted. You use that word so beautifully. Um, to get the cochlear implant for their kids as well. And maybe that’s a part of it is, is just not being ready for it either.

Karen: Yeah, and you know, I feel for parents that are in the crunch of time because it really is truly a neurological emergency to get the implant as quickly as you can because it does change every aspect of the child’s, you know, development of the auditory process I’ve had. And what do I mean by that? What I mean is, um, I’ve had a parent tell me, you know, she has two boys and um, both of them born deaf and hard of hearing. And with um, one of them got his implant at fourteen months of age. Oh wait. God, it’s pretty fantastic.

Bianka: Yes.

Karen: Um, and then he learned to listen. Um, but his brother got his implant when he was eight months of age. And it was, um, very quickly after another. So he went bilateral within six months from seven months of age. So he got a first implant, then had a second surgery. Six months later, and so he was essentially bilateral by a year and a bit. His brother got his second implant when he was four years of age. And there is such a huge difference in the auditory capabilities, you know, their ability to understand speech and noise. And maybe not their ability to understand speech and noise, but the effort that it takes to understand um, you know, the older one needs more calling of his name before he responds to it. You know, whereas the younger one is, it’s instantaneous and we can localize quickly and And the mother said, you know, she says, um, it, it, I can tell my older son has trouble hearing. It’s subtle, but I can tell. He’s fantastic, but I know he needs a little bit of help. This is my younger son. I could not tell. And I would not be able to know, I wouldn’t realize that he had any hearing difficulty at all, unless you saw devices on his head. So that’s how much of a difference it makes in auditory functioning and the research shows this over and over and over again. The earlier you get the implant, the better the outcomes, the less remedial the intervention and the more developmental it happens. And so, you know, I can’t imagine the amount of stress parents have to be under, must be under, to make the decision so quickly. And they would love to ask their kids, what would you do? What do you want? Well, you can’t do that, you know? Um, and, you know, for me, Um, you know, it’s just my emotions. I, I, you know, I knew it would have been better if I would have gotten the implant. Before my daughter was born, it would have been so much better for me functioning-wise because the neuroplasticity of my brain auditory centres of my brain is so much better when I’m younger versus older. I will say this. If I would have, if you would have gone to me, If I would have known what I would have had to go through and I would have to make that decision again as to whether I’m going to get the implant, would I do it again? With going through everything I did again, a soft failure. (HUGE GAP HERE – last five minutes) I cannot believe how amazing this cochlear implant is. Okay, it’s not as great with music. But, but, it completes the hearing experience of music with my hearing aid. The implant completes it. But if I have the cochlear implant alone with music, It’s not as rich as it is. That’s the only problem. The only problem. And for me, the, the rest of the improvements has, have changed my life so dramatically. It’s so much easier to hear. It’s so much easier for me to get on the phone and call visa. And say, I’m having problems with my card and, you know, and I can tell whether the person on the line is speaking from a speaker. A microphone from, you know, one meter away versus the microphone on the headset. And I’ll just say, can you use your headset microphone? It will help me to hear better. Like, just having the confidence to ask for it. Like, if I would have had the hearing aid and if I would have had, you know, trouble hearing that operator, that assistant on Visa, I would have just said, you need to talk to my husband. Martin, I tried my best. You need to step in. And then he stepped in and he would look after it. But now, the only thing that’s a negative is that Martin won’t make any more fun.

Bianka: Good on him.

Karen: He learned from my mother. So, and I’m okay with that, you know?

Bianka: Well, that is, that’s such a lovely. Thank you for sharing that. And I think what’s so lovely about that and so fitting that this week we actually celebrated International Cochlear Day as well, because we are incredibly thankful for this technology, as you’ve just told us firsthand. And myself as mom to Oli who, as I shared with you the pictures this week, who at five is standing up in front of his class telling them about his cochlear implants and Is advocating for himself when he doesn’t hear something and says, excuse me, and gives his coaches his mini mic. He walks up to the coach and he asks them to wear it, which. He sees the benefit in it as well. And yeah, it’s an, I don’t think we can speak enough about how incredible the technology is. And just as you said, would we have gone to, I would go, yeah. In a heartbeat, you would do it all again to see what it’s given Oli and the little way that he has come today now. So. Well, I think, I think that is a absolutely good place to end off today. And I thank you so much for going in depth into your story today. And I think that we’ll have to dive into the soft failure at some point as well.

Karen: And cochlear turn on, what did it sound like to an, uh, to an adult? And what would be the difference with Oli? How would Oli perceive it? I have theories about that, by the way.

Bianka: And. No, we’re just banging the carrots. We’re just gonna keep on telling.

Karen: Here we go. we’ve got so much more exciting things to talk about, my friend, don’t we? And share.

Bianka: And again, like, like our theme for our podcast, uh, what we really got to chat about today was the Ubuntu aspect. The multiple people that have been in our lives from that family, from our surgeon to our audiologist. To your audiologist, to the engineers who came over from Germany all the way to Canada, to the surgeon, we have had this absolute Ubuntu experience.

Karen: Yeah, and don’t forget the audiologist in South Africa. I mean, how amazing is that?

Bianka: Yeah, absolutely. Thank you, Karen. And we will see all of you again in two weeks time.

Karen: Yeah

Bianka: Bye

Bianka: So that’s it for today’s episode of Ubuntu, hearing, communication, language, and connection. Thanks for spending time with us.

Karen: We hope our conversation sparked new ideas and gave you some comfort or simply made you feel connected. We’d love to hear your story. Reach out, share your experiences, and keep the conversation going.

Bianka: Remember, we’re just sharing our perspective and our respective journeys. There’s no right or wrong path. Only the one that’s right for you.

Karen: Until next time, take care and stay curious.