All About You: Independently taking charge of your hearing loss – Episode 93 with Xinke Liu
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On today’s episode of The All About Audiology Podcast Dr. Lilach Saperstein share with Xinke Liu. Xinke is from China and was diagnosed with hearing loss at 15 years old. Currently, she is the co-founder of Orka. The two speak about Xinke’s experiences with hearing aids, Cochlear Implants, multilingualism and multiculturalism. Despite her family not being that involved in her hearing loss experience, Xinke has become her biggest self advocate and this quality of hers shines throughout the conversation.
This week on the All About Audiology podcast:
- 4:30 – Certain unwanted behaviors that we see in children who are Deaf of HoH are attributed to their hearing loss.
- 6:22 – Cultural norms can be a barrier for one to recognize that they might have hearing loss.
- 7:10 – Turning captions on during a TV show or movie is an example of Universal Design.
- 13:22 – Just because someone receives a hearing aid or CI, doesn’t mean that it’s doing its job correctly or that it’s fit properly.
- 32:00 – It is helpful to talk about your own or a loved one’s hearing loss journey so that all the feelings do not get bubbled up inside.
- 43:00 – It is crucial to seek treatment as soon as possible
For more resources and research visit:
All About Audiology Facebook group
Related Episodes:
Podcast episode about Universal Design
Mentioned in this episode:
Podcast episode about Universal Design
The All About Audilogy Facebook Group
All About Audiology on Tiktok
All About Audiology on Instagram
https://drlilach.teachable.com/p/all-about-you-52
Dr. Lilach Saperstein:
Welcome back to The All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is a very interesting and special episode – All About You: an interview with Xinke Liu, who is going to talk about her journey with hearing aids, Cochlear Implants, and also about multilingualism, multiculturalism, moving around the world. And I’m really excited to share this story with you and have Xinke share her experiences. Many parents and people who have a Deaf or HoH child in their life are in this All About Audiology community, and everyone should feel that their story is represented in some way. So lots and lots of different people have shared their story on the podcast, and I invite you to do the same. If you’re interested in being a guest – DM me on Instagram and be in touch so that our community can continue to grow and help each other and support one another.
So welcome Xinke. How are you?
Xinke Liu:
I’m good. Thank you. I am thrilled to be here. So happy to be here. I mean, I wish there was a program like All About Audiology when I first knew I had hearing loss when I was 15. So with all this information, my hearing journey would have been a lot different.
I would not have wasted like 7 years before finding the right solution for me. And the transcript – I mean, I’m sure you’re pulling a lot of effort, proofreading and correcting the transcripts and for us with hearing loss it’s always such a delight to see a podcast, with accurate transcripts. So thank you, Dr. Lilach.
LS:
Oh, thanks for mentioning that! Because it always is so important to be accessible! I’m trying to do something for a particular community of people. Of course it would be my goal to do that. And yet it’s a big, like you said, effort and expense. So I’m grateful to the supporters of the podcast. If anyone wants to join our Patreon, this is a good time to mention that your support really helps for the production of the show. But I know that there’s always more to do like captioning on Instagram stories and making sure [there is] accessible, alternate text. There’s always more things I’m learning but thanks for mentioning that. So I’d love to hear a little bit about your background if you could start. Where were you born? And how did you grow up?
XL:
So my name is Xinke Liu. I was born in China. I had hearing loss when I was 15 years old. Now, I’m a bilateral cochlear implant user, but before that I used hearing aids for about 7 years. And now I’m the co-founder of Orka. Orka is a hearing aid company. We design hearing aids, [and] general purpose chips.
LS:
So before the age of 15. Did you have any problems with your hearing? Did anyone in the family have any suspicions? What was it like growing up?
XL:
No one ever suspected that. I think it’s kind of absurd because when I had my first hearing test at age 15, the results came out. And it was profoundly severe on one side, and severe on the other side, so at that point I should have went straight with cochlear implants, but I didn’t. And I think me and my family just kind of ignored the signs, because I wasn’t struggling in school. I wasn’t struggling making friends or anything. I thought I was just having attention deficiency problem. I remember that I used to talk to my friends, and when they answer me I started drifting away, and then I would remind myself, Okay, don’t do this. Now pay attention. So I would ask my friends to repeat them[selves], and I think it works like when they repeat them when focus[ing], I seem to understand them better. But now, looking back, I know I was just compensating for my late hearing loss with lip reading.
LS:
Wow! That sounds so effortful, so exhausting. And I love for parents to listen to this and know that a lot of the behaviors that we see in children who are Deaf of HoH – they’re attributed to the hearing loss, but we may not know that. So we see kids who are rude or ignoring you, not paying attention, and all of those behaviors we’re putting our interpretation of it. But really it could be they didn’t have access to the sound; they’re not ignoring or being rude or not paying attention if they’re not hearing that, and that’s so hard for you to have dealt with.
You were hard on yourself, or you’re not paying attention. And all the things that you didn’t even know you were missing. And then to say: Oh, it was a hearing the whole time. That’s so frustrating!
XL:
Yeah, and I think the thing with lip reading is that maybe because I was a kid [at that time]. So, lip reading wasn’t that exhausting for me. I mean, if you want me to do lip reading now, I would definitely say no, but I was a kid. I didn’t know what I was not hearing, and I guess it’s also related to The Chinese language. It’s because we have different accents, different dialects here in China. So the TV shows always have captioning on. And the movies always come with captions. So I never had trouble understanding these, because we had different dialects. People already have problems understanding each other if they’re not speaking Mandarin. So I didn’t suspect it was my problem. I just thought, oh, it’s noisy! Oh, that’s what happens to everyone else.
Well, looking back, I know I was struggling, but then I didn’t feel like I was struggling, or it was frustrating at all. I was just thinking, why [do] people have radio – like I can’t really hear that much from radio. I don’t think that’s an efficient way of communicating information. But now, looking back, I know. Oh, yeah, because I wasn’t hearing what they were saying.
LS:
Yeah. So it was more normal for you. You didn’t realize that everyone else wasn’t experiencing that as well
XL:
Yeah, right? I just didn’t know. I thought everybody was just studying by themselves. So I didn’t ask. I didn’t know you were supposed to, you know, listen [to] what the teachers have to say in class
LS:
Ah yeah, you mentioned the word over compensating before – that you had so many other ways to do the things you were expected to do. So you studied from the book, and you saw the captions. That’s very, very interesting.
XL:
Yeah.
LS:
We did an episode a while back on something called Universal Design, and how when there’s more accessibility, it doesn’t only help people who are disabled in a specific way. But it actually helps everybody. Like you’re mentioning that there’s always captioning on TV because of the language. That is not only helping people with hearing loss, but it’s actually probably helpful to everybody from the language aspect. And also, you know, from not having to put so much effort into listening to the TV. So I’m gonna link that episode about how when we use accessibility tools, if they’re universal, that benefits most people – even people without the specific quote on quote issue that it could be helping.
XL:
Yeah, actually I took a class in universal universal design before, when I was doing my master’s program. I took a class called Disability Studies, and the professor told us about this universal design. And we visited a campus that was specializing in universal design in Berkeley, California. So I think it’s great. And I also kind of envy the students of the Covid era, because when they are doing the online courses they always have the captions on.
LS:
Yeah, in a lot of ways there were a lot of advances in going online. I’ve heard people also say the fact that when you’re in a class of 20 people, let’s say, and everyone is in the screen equally, then that’s more helpful than physically being in a room and having to look around and catch all the different conversations. So there’s definitely some pros, even with a lot of the challenges that came with being online. So that’s good that you noticed that.
I’d like to ask you a little bit more about what happened after you got the hearing aids. And did you start to notice the change in all the things you had been missing? So what was that experience like for you?
XL:
Actually, no. At first I had this pair of hearing aids. And I think because the awareness for audiology in China was quite low then, and the audiologists [are] not that advanced or it’s a small sector. And my first hearing aid wasn’t powerful at all for me, I mean the audiologist – I’m not even sure she’s a licensed audiologist. Now [that] I think about it, I think she’s just a salesperson. So she prescribed this hearing aid for my left ear, which is my worst ear. So the hearing aid didn’t work at all. And I thought: Oh, that’s what all hearing aids are like. So I stopped using them after a while because it wasn’t working for me. But then I remember when I paid a visit to a doctor in Beijing, the capital city of China. And the doctor mentioned something about CI, but I didn’t know anything about CI then. So I remember coming out of his office, and there was this salesperson in the hallway. And he was telling me about CI. But I thought, this is so scary. No way I’m gonna have surgery because the salesperson told me about it in the hallway. So it’s not really how I pictured this would go. And then that’s just the story of it. And at that time I was still in China. But after a while I went to the United States for college, and it was at that time I realized: oh, my hearing ability was so bad because I could not lip read in [a] foreign language.
LS:
Hmm.
XL:
That was really hard for me. So it was only then that I realized, I can’t really hear much.
LS:
Wow! Very, very interesting to hear that the environment changes. The language spoken around you changes, and you were in college, too, which in itself is a challenging environment – studying and classes. And that’s when the difficulties arise for you. And also I’m curious to hear when that doctor mentioned cochlear implants. Did you look online? Did you know anyone who had it like, were you interested in researching more? Or did you feel like that’s not for me, because it felt salesy?
XL:
I feel shame because I’m not that active in my hearing journey at first. I was quite passive, because I was back in China then. I thought I didn’t have that much problem. So when the doctor mentioned something about CI, I just thought: okay, it’s not for me. Not just yet. I mean, he didn’t push me to do it. So I thought, okay, maybe it’s not that urgent to get the treatment. Somehow my parents didn’t take it seriously. I didn’t take it seriously.
LS:
I just want to make sure that there’s no shame coming from me. Everybody’s journey is their own. And it seems like if the challenges that are usually associated with hearing loss were not a big detriment in your life, then it makes sense that you weren’t totally motivated to dive in to figure out what to do about it if it wasn’t such a big part of your world. I think this is actually a really important lesson for people to hear. That sometimes we have these goals that we put on other people. As professionals, we do this (what we think people should do, or how involved they should be). And for some people that’s not what their goals are, what they need. So I respect that a lot. And I definitely didn’t mean to introduce any shame or hope that you don’t have shame on what you did for yourself when you needed to at the time.
XL:
Yeah, right? I used to think: I get by. So, because my first experience with hearing aids wasn’t great. So I just thought: Yeah, I’ll just rely on lip reading. And I thought I can still get by.
LS:
Yeah. And the piece that the hearing aids weren’t powerful enough [and] weren’t fit properly.
That’s something that we also want to take into account. Just because someone gets the technology doesn’t mean that it’s doing what it’s meant to do or [that it’s] fit properly for the person. So, yeah, definitely making sure you go to an audiologist that’s trained, that knows what they’re doing and helping, if that’s accessible, that’s an important point, too.
XL:
Right? That’s why I really appreciate the hand holding my second audiologist gave me. So after I started college in The States. As I said, I realized I wasn’t really understanding what the professors were saying in every class. So I went downtown to find this audiologist. Her name is Dr. Cohen. And Dr. Cohen, if you are listening to this, thank you so much. Dr. Cohen is an audiologist in upstate New York, and she helped me find the right hearing aids for me. And she also helped me set up all these accessories like the FM System and the [unclear] so the professor could talk through the microphone, and I could hear the professor better in my hearing aids through a streamer.
And then later, I don’t remember what time but at some point, she suggested that hearing aids may not be powerful enough for me. So she wanted me to have cochlear implant surgery. She contacted this surgeon in Manhattan, in Columbia University, and she booked an appointment for me. She even told me about how my student insurance will cover the surgery.
LS:
Wow.
XL:
Yeah. Then I did everything she told me to do, and then magic happened. The first time the audiologist activated my CI, I was like what?! After I left the audiologist office I took a taxi and then suddenly, I noticed the advertisements in the taxi that was playing, and I was thrilled. I started talking to the taxi driver about this magic thing that just happened. And I mean, if there was more information available when I first knew I had hearing loss, it would be a lot different. I only had my first CI surgery after college. So basically those 4 years, while I was sitting in the classroom, as mostly, you know, just drawing something in my notebook and pretending I’m listening.
LS:
Hmm! Wow! So that was a big change for you, and you had both cochlear implants at the same surgery. You did bilateral at the same time?
XL:
No, I have my first one in 2015. And then while I went to grad school in California. I had my second surgery and my student insurance also covered that one. So I’m quite lucky.
LS:
Yeah, that’s wonderful. I’m curious to hear if there was ever a point in your journey, after getting the cochlear implants, that you felt we regret, or maybe grief about the years that you didn’t have it, or if you were more open and understanding that that’s the way life goes. You know, I’m wondering if you had a journey around that, or if your personality is more accepting of what’s going on .
XL:
Well, I have to say, even though my personality is just more like accepting everything that happens to me. I did regret that I waited so long before having my first CI surgery, because
I was struggling then in college. I was a bit depressed. I didn’t know by then, but I was certainly at school, and I thought I just didn’t like to go out . But that’s not true. That’s a fat lie I tell myself. So you know, when you can’t communicate with people and when you can’t make new friends,
I started telling myself some lies like [for example reading]: I like reading, I prefer it this way. This is how I like it. But that’s not true.
LS:
Hmm! So you are isolating yourself and saying: Oh, I’m an introvert. I like being on my own.
XL:
Yeah, exactly. So I was isolating myself and limiting myself to things I thought I could do.
LS:
Yeah, that’s really important. And I’ve worked with people through Zoom internationally. I have clients all over the world. And we do sessions around how the emotional part of their journey, the social part- how that’s impacted their relationships and their work. And something that happens very often maybe around the second or third session is that people can become very, very upset and sad that they hadn’t had the opportunity to talk about these things in the past or [say] I wish I had met you 6 years ago or I wish we had done this many years ago when I was struggling. I’ve heard that kinda sentences from a lot of people before. Because with clarity, once you’ve understood things, once you feel a little more comfortable with your own story – then there is a moment, usually right after the clarity that is grieving that you wish you would have known that sooner to have you and avoid so many struggles that could have been. And I really think that’s an important step in everybody’s journey. That that’s valid, that you’re allowed to feel that way, no matter where that’s coming from. And at the same time to say: hey, I found it. Now I have it now, and I can move forward from here.
XL:
That’s why I want more people to know about audiology and know how technology can change our hearing journey and know what hearing aids or CI – what they can do to help us.
LS:
Yeah, amazing. So can you tell us a little bit about Orka and your work with this company you founded? Tell us about that.
XL:
Yeah, so, Orka is a hearing aid company, and in 2018, when I was doing my master’s program in California, my co-founder, Ben, found me. He approached me, and he wanted to talk about hearing aids and my experiences with hearing loss and CI. I mean no one ever wanted to talk about these things with me before. And at that time, Ben was an engineer at Apple, so he purchased this pair of hearing aids for his grandmother, and he realized how expensive these things are, and how difficult they are to use. So after a while his grandmother just stopped using them. So he thought, it shouldn’t be like this. We could design something that’s more user- friendly and more affordable. And he told me about his plan to start a company. So at that moment I thought, wow, this is fate calling. So I said I should join you, and he said: yes. That’s how we started with Orka. We have [unknown] in the United States, and here in Shanghai we have a team close to the manufacturing facility.
LS:
So you’re producing different kinds of hearing aids. How would people get them? Are they direct to the consumer? Or you work with audiology and dispensers?
XL:
Right now, we’re selling directly to consumers. But it’s not that we’re obsessed with selling exclusively to consumers by ourselves. It’s that we want to talk directly with the consumers. So we have their direct feedback. We would understand how they’re doing with the products. We want to make sure, like they are having the kind of customer service we want them to have. We want to make sure they’re not just buying the product and [then] store them in the closet. That’s why we are selling directly to the customers now, because I understand how much the handholding process means for the users especially in the initial phase.
LS:
Hmm! And how do they get programmed? The devices, right? Because the process of having a hearing aid programmed appropriately has a lot of software and a lot of finetuning. So I’m curious – if someone gets a hearing aid, you know to their door, how do they then do all of those changes?
XL:
So our customers can get the hearing aids delivered to their door, but we have in-house audiologists who can program them over the air. So we can do this remotely.
LS:
Got it
XL:
We developed a [unknown] council. So audiologists can program the hearing aids for customers over there. It doesn’t have to happen in person.
LS:
Got it. Okay, so that’s really important to know, because I think there’s a difference between over the counter amplifiers and different things that there’s a lot of confusion around what devices are appropriate for different people’s hearing loss. So I would always recommend having audiology, guidance. So I’m glad to hear that you’re doing that remote fitting. That’s really really good, and also very accessible for people who can’t reach an audiologist for whatever reason.
XL:
I mean, total support of over the counter hearing aids. I think the brew is great, because that will welcome more players into the field and definitely accelerate the innovation in this field. But Orka isn’t going self-fit just yet, because from my own experience, I know how important the initial on board experiences are because it’s not like glasses. You can just put them on and have clarity to yourself. So at first our audiologists are there to tell the customers: well, you should start by using the hearings aids for like 4 hours a day, and then 6 hours a today, and then what to expect in the first months, what to expect in the second months, or in half a year, and how your family can be involved in this, because oftentimes we are not just dealing with the users. Oftentimes it’s wives and husbands – we have to get their family to understand about this as well. So yes, we’re not going self-fit yet. We don’t want them to just buy this product and just store them in the closet and never touch it again. We want to make sure they’re using them.
LS:
Yeah, that’s right, or fit them incorrectly, and maybe make them too loud to cause more damage or not loud enough so they’re not helpful. So very true, very good. I find the fact that you are involved now in a company that’s helping other HoH people to be so inspiring and so wonderful. I wonder if you have advice for any people who are listening or reading the transcripts of our podcast in our community, of what you expected your future to look like and what you are now seeing that is happening with your life.
XL:
I wouldn’t say this is advice, but this is a future I want to see – as I mentioned before, I was a passive user along this journey, I wasn’t doing much research. But now I think it shouldn’t be that hard for people to access all the knowledge, all the solutions to themselves, or a hearing aid purchase could also be a no-brainer in the future.
LS:
Hmm.
XL:
It’s like, if I want to buy a smartphone now, I wouldn’t have to do all of the research. I may just go to Apple and buy the most popular one. I kind of hope with hearing aids, with audiology, people would have this one touch point where they can have all the information they may need. They don’t have to push themselves to do anything or exhaust themselves in finding the right solution for them, or wait for 7 years, like I did. They could just have these to them right away. They wouldn’t have to do all the work or efforts, and just leave that to the professionals, to the hearing care industry.
LS:
I hear that. We talk a lot about advocacy on the show, and it is important to be an advocate. But I really like your vision that we wouldn’t need to do so much advocacy. We wouldn’t need to push so hard to get the things that would be helpful for ourselves and our kids. That’s really a beautiful thought. I’m gonna take that on.
XL:
Yeah. But it’s really what I want. I mean because, yeah, it’s definitely my personality, like, I don’t want to do some research. Just tell me which one to get. What should I do? I just don’t want to put any effort into it. I mean, I want it to be more like consumer electronics that I can just buy there and start using them. And there’s customer service along the side, so I wouldn’t have to put in all the effort.
LS:
Yeah. And of course, we have to just make one distinction for the difference for adults and children. And people who have complex medical contributions to their hearing loss definitely definitely need doctor guidance. I’m just gonna put that out there. But okay.
XL:
That was a vision that’s not possible now. But what we’re hoping to achieve in the future.
LS:
Yeah, and I think it goes back to what you said before, which is that there’s the option that there should be more options, that you can go the medical route, or you can also try something out first and see how it works for you in a more personal way. I’m curious if you can talk a little bit about English, because you speak more than one language, and your language skills are excellent. So I wonder if you can talk a little about how you learned English, and maybe even what language you prefer in your day to day life.
XL:
Chinese, definitely, because I live in China, and I can’t communicate with people in English here. But I think the one thing about English is that actually, I think I started learning English in primary school. So my hearing problem wasn’t that bad yet. So I learned some English by then. But after my hearing ability started deteriorating, I relied heavily on reading and relied heavily on the captions. Like when I was watching Friends, I would read the captions. I wasn’t really like learning English [used] in day to day life. I was relying mostly on the TV shows, movies with captions on.
After I had my cochlear implant surgery, things definitely got easier and now because my CI has bluetooth connectivity, I’m listening to audiobooks all the time. I mean sometimes when I’m having dinner with my dad, I would just play audio books, and I could listen to them while, you know, smiling at my dad, But listening to audiobooks definitely helped me not just with my English but also with my Chinese. Because I was speaking Chinese with a strange accent before. It’s not like I’m from a certain area of China. But like I was just speaking it in a different way. I remember I used to get a taxi. And the taxi driver would ask me: are you a foreigner? I would say: no, I’m not, and they were skeptical because they think that you sound different. And now, looking back, I know. Oh, that’s because I had hearing problems. So my Chinese sounds a little bit different than other people do. But after I have my CI, the audiobooks and podcasting in Chinese and in English, they all helped me to have my speaking skills back.
LS:
Wow, yeah, I mean, that’s a very common thing – the deaf accents; that is not quite so different.
But people do tend to notice it. That’s pretty common. So interesting that you’re sort of doing your own rehabilitation program with listening to all this.
XL:
Yeah, because I’m an adult after I have my CI, I didn’t know there was a rehabilitation program. So I was just doing it myself.
LS:
Wonderful.
XL:
But I remember at first I couldn’t hear the podcast like a 100% clear, so that I would just do it every day. And then gradually I noticed, wow! I get to understand everything in that. And that’s great. So I guess that’s how your brain works. You have to adapt to the language. I was just learning both languages again.
LS:
Hmm! Do you know any hearing loss in your family? Anyone else? Cousins or other people that have been affected by this? Or do you have any idea of the cause of your hearing loss?
XL:
Actually no, I’m only one. I know that’s strange. So I guess it’s because of some kind of, I don’t know, side effects or some sort of medicines that caused this in me. But I have no relatives who ever have hearing problems.
LS:
I’m only curious about that, because many people – they want to know the cause, and they want to know if it could be affecting other people and their family. And I’m curious if you ever went down the road to do genetic testing, or try and figure it out or if it’s not as interesting to you.
XL:
Yeah, I had a genetic test before but that didn’t show anything about the hearing loss problem. So I have no idea. I mean afterwards, I was also obsessed with the cause of hearing loss. My family was obsessed with that, but after a while you just kind of just drop it.
LS:
Yeah, that’s something we hear very commonly from parents, especially parents who want to have other children. And they want to understand where this came from. So what helped, do you think, to not be so occupied with that question?
XL:
I guess we were busy listening to audiobooks, doing your own rehabilitation program and just looking forward. Not looking backwards. Maybe that helps. And you know it’s the same with therapy sessions. I guess. I did have a lot of therapy sessions only after I had my CI surgery. Because only after the surgery, I realized what I was going through – like, how can I stop obsessing about the things that could or could not have been done? And that helps. Yeah, I mean, I’m not sure about other people. But therapy sessions definitely helped me.
LS:
Yes, we are big fans of counseling and getting the help you deserve, because when you go through something that’s so significant and affects all the parts of your life, your communication and your relationships and your work. That’s pretty significant, so getting help with that, I’m really impressed to hear you bring that up, and I hope that more people are encouraged to not have stigma around it. Especially when a lot of parents are so concerned with getting their children all of the services, and therapies that they need which is good but what about the parents? They should also have some help. Take your own journey in it seriously, as well.
XL:
Yeah, definitely. So I think the parents should not, you know, criticize themselves for whatever is happening to the child, because most of the time, it’s not their fault. It’s not like they want this to happen to the children intentionally, it just happened. Yeah. It’s just nature.
LS:
Can you talk about maybe your family’s reaction to getting a cochlear implant, especially [that] you were in a different country doing things as a student. How would that play out with your family?
XL:
My family they’re pretty cool about it. I mean, they did not take my hearing loss that seriously before, and they are not taking the CI thing seriously now. They never see me as the different child who needs extra care. They just thought I was doing good. I don’t know. There’s pros and cons to that attitude.
It’s pros is that I never felt that because of my problem, I couldn’t do anything. They never said, Oh, you have a hearing problem, you’re not supposed to go to the United States, and start in a different country. They just let me go. I mean, because I think if I were my parents, I would be worried, right? But they didn’t worry at all. So I guess that attitude was kind of liberating for me. And when I had my first surgery, my dad was there with me in Columbia University, and I remember this vividly – like he was supposed to be there for me, because the first night was kind of crucial. And I remember Thursday night my dad woke me up and he said: hey, Xinke, I’m gonna leave you here for a while because I have to charge my phone outside. And he just left me there, and he was playing with his phone outside there. That’s what my dad’s like. And when I had my second surgery, my mom and brother were there for me. And they were equally, how do I put it, careless? They just didn’t take it seriously. I guess maybe I was having the surgery for the second time. I was used to it, and so what they said was, they were there for me to take care of me but the truth was, they were there for thought: Okay, Xinke is doing okay. And they just went out for some tourism. I don’t know. That’s what it’s like. Yeah, just – I know they never take this seriously.
LS:
Interesting. Yeah, it always has 2 sides to every experience that you can hopefully feel supported. But even when people are very, very supportive, sometimes that feels like hovering, and parents who are so obsessed with what’s happening makes that the whole relationship with their child is only about one issue. That’s also, you know, is too far in the other extreme. So it’s interesting to hear that you share an experience which I think maybe also culturally, might have an impact of how this was responded to. Also that you are older. You were an adult at the time, not a child.
LS:
So it’s very interesting, I think, for people to hear different versions of the quote on quote CI story, CI experience. And that every person in every family is gonna go through that in their own unique way.
XL:
Yeah. And I am not defending my family, but I guess it’s because they didn’t think this was a serious issue, and they didn’t think this is going to limit me in any way or affect me that much. So I wasn’t scared of hearing loss. I thought it’s just this thing that happened to me. So because they weren’t scared, so I wasn’t scared as as as well
LS:
Very interesting. Wow! Thank you so much for being so open and sharing your story. I think it helps a lot of people to hear many different versions of other people’s stories. What they can relate to. What’s the same, what’s different in their family [and] in their life.
So I’d like to ask you if you have any specific story or something you learned that you wish more people would know. And now’s your chance to tell a couple 1,000 people.
XL:
I think this thing about my story really is the attitude. Because when I tell people about my story, as I said, it’s kind of absurd. But sometimes it’s that absurdity and that careless that made me through the whole journey. I mean if I surrounded my whole life with hearing loss, I would not have gone to The United States for college. I would not have done what I did. But because I didn’t care about it that much. So that kind of [made me free] to do what I wanted to do.
LS:
I think this comes to another question I’ve been thinking of. We also talk a lot on the podcast about identity and how people take on this banner for themselves, that they are Deaf or HoH, that they are a cochlear implant user, that that’s a big significant part of who they are. I’m, wondering if you identify with that? Or if you feel like, it’s one aspect of you, part of many, and not so much a big part of only your identity
XL:
Sometimes I play the cards of “CI” to my advantage. I remember there was one time I arrived at the airport super late, like 20 minutes before taking off. And so I just went straight there and told the security staff, I said, I am hearing disabled, and showed them my CI, and they didn’t know what to do. So they said: Oh, okay, go ahead. And yeah, I’m kind of naughty sometimes when playing that card. So that identity is sometimes there for me to have fun with.
Like I enjoy reading everywhere, because wherever I go, if I want to be reading, or if I want to be sleeping, I just take my CI off. Then I have this quiet place all to myself. And maybe when you are sometimes having fun with the fact that I can sleep everywhere on the airplane, in the train, when kids are crying, but you were just there so peacefully. That’s good, and that kind of, I don’t know, just plays with your brain sometimes. So you would take that identity as something for your own, and you have fun with it. I mean, I’m definitely having fun with my CI because I have 2 cats. They’re really naughty and really noisy at night. But that doesn’t bother me. So I have a really good relationship with them.
LS:
Yeah, I could see you focus on the benefits. But do you feel that if you meet other people who use CI or other people who are Deaf, that you have a certain kinship, you know, relationship to that immediately, or that’s not something that you would consider connecting all over?
XL:
Actually, we do. I mean in the past few years I started having more people with hearing loss and there is something that we share with each other, that we can’t talk to other people about.
LS:
So you do feel like, you know, there’s a certain connection you have with other people because you have this shared experience. And I feel like there’s this different thing that happens when we try to put our certain identity onto someone versus when they take that identity on for themselves – so that’s really where my questions are getting at.
XL:
Oh, I see what you may. I think actually maybe it’s a little bit different here in China. The awareness for hearing loss is super low actually. So when people know someone else with hearing loss, they’re often thrilled to find out you’re just like me.
XL:
And I know a lot of people are stressed about that, because they are not finding the right solution for them or their family is quite stressed. Or you know, we just have different personalities. So I often just go on and try to persuade them, like don’t be too stressed about this, like you can play with this identity, or try to sometimes try to share them out, because I know, some people might be concerned.
Like there’s this girl who said: If you go to school and you’re the fellow students notice you have hearing aids out, what do you say? And I said: Okay, I just say it’s a bluetooth earpiece or something. It’s my earbuds or something like that. Yeah, so I guess that’s why people really want to talk to other people about this because it’s an isolating experience. It’s lonely. We are lonely in this world, and especially with hearing aids. And particularly for people at my age like when we are young but we already have hearing loss. Of course we want to talk to each other.
LS:
Yeah, and how did it feel today to share your story and talk about it? Something you don’t do very often. How it go for you? How do you feel?
XL:
It’s pretty good. Actually, this is my first time I’m sharing my story in English. So, yeah, I never did a program on hearing loss before. I mean. You ask great questions.
LS:
Well, thank you. I’m very interested always to hear not only what happened but how you felt about it, how it affected you. So I’m really grateful that you shared all of that. And is there any last piece of advice that you would share with our audience, or anything else you want to tell us?
XL:
I would say, go seek treatment as soon as possible. Go find a solution earlier, and that’s really important, because if there is one thing I could change about my hearing journey, that would be to go have my CI surgery as soon as possible. This is not medical advice.
LS:
Sure, sure. But about this idea, that if you are experiencing any difficulty or trouble that you can look for ways to help yourself through that. And resources, professional. So that’s great advice. And I’m really grateful to all of our listeners for being part of the All About Audiology community.
Come, join the Facebook group. We have discussions over there. Follow me on Instagram, and on Tiktok – all about audiology podcasts. And just the last thing I’m gonna tell everybody about in case you haven’t heard: This year, we’re doing a mindfulness practice where you join our library of weekly audio meditations. They’re just 5 to 10 min very short, weekly ways to feel more grounded and more connected. So if you want to learn more about that, go to https://drlilach.teachable.com/p/all-about-you-52 and join us there. Thank you Xinke for being on the podcast today. Have a wonderful day.
XL:
Thank you.
