Sami Rigby's Inspiring Journey with Ménière's Disease and Single-Sided Deafness

What would you do if you suddenly lost your hearing? Sami Rigby, an Australian advocate and someone who knows this question all too intimately, joins us for an enlightening conversation on managing Meniere's Disease and her experience getting a Cochlear implant. Sami takes us through her personal journey, sharing how she moved from a moderate to severe hearing loss amidst the COVID-19 lockdown, the emotional toll it took and how she discovered the power of self-care and the courage to prioritize her needs.

Isn't it fascinating how the brain adapts to new challenges? Sammy's experience with her Cochlear implant goes beyond just a medical device, it's about the brain merging the sounds from the implant with natural hearing - a process Sami describes with vivid detail. From initially sounding robotic to gradually resembling someone speaking through a microphone, she shares the strategies she uses in noisy environments and the importance of shifting mindsets in social situations. It's an account that not only demystifies the Cochlear implant but also gives a voice to the Meniere's community.

There's a special triumph in overcoming obstacles and reclaiming your life, and Sami's personal victories are a testament to that. She opens up about her acclimation process with the Cochlear implant, the tools that helped her along the way, and the importance of hearing protection. Her story is a beacon of hope, reminding us of the resilience of the human spirit, and how technology is transforming lives in the hearing loss community. Join us for this inspiring conversation that will leave you with a renewed appreciation for the everyday activities we often take for granted.

Connect with Sami Rigby on Instagram: @deafjamsami 

Transcript

Blaise Delfino: 0:06

You're tuned in to the Hearing Matters podcast. The show that discusses hearing technology, best practices, and a growing national epidemic: Hearing Loss. Before we kick this episode off, a special thank you to our partners. Sycle - the all-in-one patient communication and engagement platform. Redux - Faster. Drier. Smarter. Verified. Otoset - the modern ear cleaning device. Welcome back to another episode of the Hearing Matters podcast. I'm your host, Blaise Delf ino, and joining us today on this episode is Sami Rigby, all the way from Australia. Sami, welcome to the Hearing Matters podcast. Oh, thank you Blaise. It's a pleasure to be here. It's such an honor to have you on the show. Like you and I were saying before we hit the record button today, we have been following your Instagram account and your story for quite some time now, Sami, and really, on behalf of the entire Hearing Matters podcast team, thank you so much for all the advocacy work you're doing, because it's really enlightening, it's inspiring and you have such a loud voice in the CI and Meniere's community.

Sami Rigby: 1:23

Yeah, it's really nice to hear that, because that was the whole purpose of me creating that Instagram account was just to kind of demystify things and help people. So, yeah, I love that people enjoy it.

Blaise Delfino: 1:35

Well, it's working and we are so honored to have you here on the Hearing Matters podcast. And before we dive into your experience with wearing a cochlear implant, can you share your journey with us from the initial diagnosis of Meniere's disease to where you are today as a CI user?

Sami Rigby: 1:56

Sure, my journey started in August 2021, which was during the second COVID lockdown here in Australia or in my state in Australia. So it was a very stressful time. I was a small business owner. I run my own women's only strength training gym, so my stress levels were through the roof and I had some mild vertigo. That was kind of just mild, but enough to be annoying, and I had it for about 10 days.

Sami Rigby: 2:20

Then one day I was going for a walk listening to my AirPods, and I realized that my left air pod wasn't working properly. So I got home, you know, just kind of cleaned it out, tried it again still not working showed it to my husband. He used it and said it's working. I'm like, oh okay, maybe my ear's not working. So then I went and got those ear wax cleaning ear drops that you get from the pharmacy - terrible idea, because the ear, I realized, actually felt really full, like it had fluid in it. So after that I went to the doctor and he asked me what I was experiencing, which was vertigo, ear fullness and then he put his fingers. He rubbed his fingers together underneath my ear and he said can you hear that? And I was like no, I can't. And he said go and get a hearing test immediately. Straight to the audiologist, she tested my hearing and I had a moderate loss straight up which had just kind of happened seemingly overnight. I hadn't actually maybe noticed it because I wasn't out in public, we were just at home, you know, in lockdown. She knew an ENT in Sydney. She called him, she sent through the audiogram. He said get this girl to Sydney immediately.

Sami Rigby: 3:34

So I went to Sydney on a flight from Tamworth. I was literally the only person on the plane because it was COVID and there was like three flights a week. Wow, okay, yeah, it was very weird, very, you know. Added to how scary it felt for me because it was like, yeah, post apocalyptic, kind of no one around. Anyway, I went to hospital and had steroid injections and I had bags and bags of IV steroids pumped through me, sent me home eight weeks later let's test your hearing. And I was up to, I jumped back up to a mild loss. Win, win, that was a success. So I got a hearing aid and for 10 weeks life was great. So I was loving the hearing aid. It was very useful, I was completely used to it.

Sami Rigby: 4:19

Then one morning I woke up, no vertigo this time, I don't even think I was stressed. Went to work, put my hearing aid on, by the time I got to work, as soon as I walked into the gym I could hear something was wrong with my hearing. Took the aid out, lots of tinnitus, cracking, popping, and within about three hours it was just like radio silence, essentially. Rang my ENT in a flood of tears. Obviously he's like go and get tested again. I was back below where I was the first time, so an even bigger loss. Same thing went to Sydney, steroid injections, no result this time. So then I'm left with moderate to severe loss in that ear.

Sami Rigby: 4:57

Tried the hearing aid again. Doesn't work now because it just seems to amplify everything and make everything quite noisy. So then I was like what am I going to do? I don't want to not be able to hear. I've been able to hear for 47 years and I've loved it, taken it for granted, definitely until it was gone. So then I went down the path of getting implants, started to look into that and acted quite quickly. I got the implant nine months after losing my hearing.

Blaise Delfino: 5:26

Sami, that is, wow. Thank you for sharing that story with us. Number one, because there's a few takeaways there. When you tell us, you know sort of took my hearing for granted I think we all sort of do, and the minute we start to lose it or we get water in our ear and we can't hear as well, it's like oh my gosh, what's going on? It's that sense that once you do notice that it's decreasing, you're like oh my gosh, what's going on? That must have been such a frightening period in your life. So not only do you have the stress of I now present with a hearing loss, there is a global pandemic going on right now. That is stress beyond belief.

Sami Rigby: 6:07

Yeah, it was pretty awful. And the other thing that added to it was I had to sort of do it all alone because of COVID. There were restrictions around how you could travel, so I flew to Sydney by myself, I was in hospital by myself, then I had to stay in a hotel for two nights, I think, because they were only running like maybe one or two flights a week, so I was just by myself a lot. So it was a pretty lonely. It was a pretty sad time. I'm not gonna lie.

Blaise Delfino: 6:29

You know, Sami, we've talked about, you know, the grieving process and being diagnosed with hearing loss. Obviously, your hearing loss is later onset. What was that like to come to that acceptance? And oftentimes, you know, we don't want you to overshare, but what was that like for you, because that's a whole new hearing world at that point.

Sami Rigby: 6:52

Yeah, look, the initial thing is I remember I just got in the car and just bawled my eyes out, you know, sat in the car and then I rang my mom, rang my mom, and I went to rang her. I said you know I'm bawling. I said this is not, I'm not dying, but something bad has happened, you know, and it was devastating. It's not what you want for yourself. Obviously. It's a real curveball because it just comes completely out of the blue.

Sami Rigby: 7:17

I'm someone with no history of any. I've never even had an ear infection, so I've never had any issues like that. No one in my family has. So it was just. It's shock, it's devastation, it's sadness, like you feel sorry for yourself, cried a fair bit, but my personality type is also one where I understand you need to sit in emotions, like you need to feel them and you need to sit in them. But I kind of have a time limit on how long I'll allow myself to do that for, because I feel like if you don't, you can kind of end up in a bad place. So for me, yeah, I just was like you know what. It's not ideal, but it's not the worst thing that can happen to a person and it does suck, but it is what it is and I'm healthy otherwise.

Blaise Delfino: 8:06

Right. Sort of that radical acceptance for sure. And you know, Sami, being an outside looking in because oftentimes if the term you know, oh, I know how that feels. Well, I personally don't know what it's like to go through what you went through, but the ability to practice empathy and see through your eyes, I can see and understand how difficult that situation was. But being an outsider looking in, being someone who is a hearing healthcare professional, love what you've done. You've taken your hearing loss and you've made it a hearing gain and this mindset you've really had to reframe. Do you think that mindset is from you know you're an entrepreneur, you've owned your own business. Do you think it's come from that? Because you've had to consistently kind of get over entrepreneurial speed bumps in a way, maybe?

Sami Rigby: 8:58

I think more blaze. It's just my personality, it's just how I'm wired, like resilience. Yeah, yeah, I am, that's right. I am sort of fairly resilient. It's probably my upbringing, you know, being a kid and lots of things happening in life, so I am a very resilient person and I kind of like I said I'll let myself experience it. So I was like, yep, this is grief. I'm feeling, I'm allowed to feel upset, but there's a limit on how long I can do this for, because I've actually just got to get on with things and I've got to get, if I'm going to get this hearing back in somewhere or another. I've got to start to research that and I was kind of threw myself into right. What are the next steps I need to take, rather than letting myself kind of spiral too much? But it's very important for people to know that not everyone is like that and it's absolutely okay to have that longer period of sadness, but for me I'm just like you know what? This isn't great, but I'm just going to get on with things.

Blaise Delfino: 9:50

And I'm happy that you're sharing this with our listeners right now, because we have received messages and there have been, you know, supporters of the show who were recently diagnosed with Maneer's disease and having to go through that process. They're not alone. They have individuals like you that they can connect with, to you know, to ask questions and lean into that vulnerability. Sami, Meniere's disease can be challenging to manage, so could you describe, you know, how it's impacted your daily life and maybe what coping strategies you've personally found most effective? Yeah, sure.

Sami Rigby: 10:30

I guess everyone's many years is different, so mine is not triggered by food. So a lot of people can't eat. They have to eat low levels of salt. They can't drink caffeine, they can't drink alcohol For me, thankfully, that doesn't impact me.

Sami Rigby: 10:45

Mine seems to be set off by stress. So exhaustion, physical exhaustion, taking on too much, not sleeping properly that's when I'll start to feel a little bit off. As far as the big attacks go, though, for me and these are the big three hour attacks that I used to have they just really literally come out of the blue, and for me they hit in the middle of the night, which is particularly disturbing because you'll be asleep and then you kind of roll over in bed and then the whole room will start. So, yeah, it's not fun. So for me, really, it's about managing my stress levels and not taking too much on, and that means work wise and socially. So I actually sold my business when I was diagnosed because I was like I just can't keep doing this. So I've offloaded that. I still work there, but I only work part time.

Sami Rigby: 11:37

And yeah, as far as social events and things go, I'm very selective about what I will go to, so something's going to be particularly draining, very hard to hear in. I might go, but I might say to someone I'll come for a couple of hours, but I'm not starting for the whole thing. Luckily for me, my friends are very understanding about that. So for me it's about guarding my downtime and being very selective with what I will and won't do. I also need to say for me, when I'm well, I'm very well. So day to day I don't have symptoms, whereas a lot of people with many years do. And then when it takes me down, it knocks me flat on my ass, basically, but then I get back up the next day and I'm okay. It's very weird.

Blaise Delfino: 12:18

To go into the relationship the professional relationship with which you've had with the audiologist and ENTs. When you were diagnosed with Meniere's disease and you were fit with the hearing aid and then received your cochlear implant, how paramount was that relationship with the ENT and audiologist throughout the process. What was that like for you?

Sami Rigby: 12:46

I feel like that is something sort of bad. That happened like a negative. So many positives have come out of it.

Blaise Delfino: 12:53

That's so good to hear.

Sami Rigby: 12:55

Really, this is my ENT. I can't even tell you how good he is. His name is Dr Philip Chang. He works at a Sir Vincent's private hospital in Sydney and the guy is one just the nicest human. Such a great guy. He speaks to me in layman's terms. He's a straight shooter, so he tells you exactly how it is.

Sami Rigby: 13:13

The first time I met him I said to him do you think I'll end up being completely deaf in my ear? And he said most probably yes. I was like okay, it's good to know. Right, he's not leading me down the garden path. He's incredible and he is this top surgeon here in Australia. I have his mobile phone number so if I wake up, if I had an attack today, I would text him and he would ring me when he could and tell me what to do. I feel completely comfortable with him. I felt I never for a second doubted him or his expertise or his advice. So when he said to me I believe a cochlear is going to work really well for you, he said I think you're going to take to it like a duck to water. Your hearing loss was so. The period from your hearing loss to implantation was so short. The success should be very, very good, and I was like, yep, let's just do this.

Sami Rigby: 14:05

So I moved forward with a lot of confidence.

Blaise Delfino: 14:09

Yeah, and when you were talking about the coping strategies with being diagnosed with mania disease and being a CI recipient, I think it's so important that we bring in what that professional relationship was and is like with your hearing care professional, because we've had stories that it was a negative experience with the provider and here, with hearing matters, we want to raise awareness of the importance of hearing healthcare and part of the success is that of the provider giving you everything that you need as the patient.

Sami Rigby: 15:30

I know, I know, and it's so hard because everyone doesn't have access to that kind of care Right See posts on. So you know, I'm in these groups on Facebook and people are like I can't get into my NT for four months and I'm like, oh my goodness, I can text mine any day of the week and I know that he'll get back to me. It's yeah, it's unfair in a way, because it's such a scary time and you're so unsure of so many things and you need that reassurance. So, to have a great surgeon or a great audiologist working with you, you feel like, yeah, I'm okay, I'm in good hands, this is okay, we're a team. And that's what my NT says to me. He says we're doing this together, we're going to do this together and that's how.

Blaise Delfino: 16:10

Yeah, and how did that make you feel like recently being diagnosed with Meniere's disease and he's saying we're going to do this together.

Sami Rigby: 16:18

Yeah, yeah, well, I just just so reassuring, because with the many years of tax too, they're so terrifying. And I would ring him and just I said to him like I just can't keep doing this, like you need to fix this, you need to fix this, and he's like I can come and we do the gentemise and injections. That's how we stop the attack. But he says that, he says we're in this together. I'll, you'll always be, I'll always be with you, like we'll, whatever comes up, we'll, we'll get through it. So I just feel, yeah, I have that reassurance, someone has my back, someone is there, he's going to take care of me and, yeah, it's good, feels good.

Blaise Delfino: 16:52

I'm not alone and it's that team approach. Let's talk a little bit about your, your cochlear implant and really navigating, Sami, your new hearing world being a CI user. What was the process like for you in number one deciding to get an implant, and can you kind of walk us through the experience of receiving your cochlear implant?

Sami Rigby: 17:16

Yeah, look, once I had made the decision to do it, and how I made the decision was with, obviously, the guidance of my ENT. But he also put me in touch with a few of his patients who also had single-sided deafness and who had received an implant. That's great. So, yeah, it was great. So I older spoken to maybe two or three people for about an hour on the phone. People are just so generous with their time answering all my questions that I had, and I had a gazillion. That really kind of solidified it for me. These people were thriving, they were loving it and it was with the same surgeon and they had the same type of hearing loss I had. And since then I've done the same thing for countless other people as well. So now he gives out my number and I talk to people. So it's great because it's again, it's that reassurance For me getting the CI and making the decision to get the CI was me kind of taking back control over my situation.

Sami Rigby: 18:09

So my hearing loss yeah, this was out of my control. The other thing with single-sided deafness is, of course, you had this underlying fear all the time that of course the Goodyear might just decide to shut up shop as well. So for me it was about gaining control. So I felt like, okay, I'm in the driver's seat now and I'm going to get this and I'm going to do all the rehab and I'm going to get it working as well as I can get it working, and I did that. My surgeon actually switches them on two days post surgery. So here you have surgery, you stay in hospital overnight and then you stay in a hotel for one night, then you go back and then they switch you on.

Sami Rigby: 18:51

And it's probably the most underwhelming experience you can ever have when they switch it on, because you're so pumped and you're so excited and you're like, oh, my God, this is it. And you've seen all those videos on YouTube of the little babies here in their mum's voice for the first time. And they turn it on and I'm like is it on? And he's like, yeah, it's on. And I'm thinking, oh gosh, I have a kid better than this and it does, it does. But I always tell people please, do not get to. It's okay to be excited, but please, because I think you're going to be let down. It's not, it's not a magical moment.

Sami Rigby: 19:26

They switch it on. The volume is down very, very low so you can barely, you know you can barely hear it. And then you slowly work up through, you know these different kind of programs, and then they're increasing the volume with each time you get a mapping or programming and now you'll. I'm at the stage now where I have it at full tilt and I've got control of the master volume and I can listen to music and blast this side of my head off. So, yeah, it's some. It's interesting. It's the hearing itself. Is is different to natural hearing, obviously.

Blaise Delfino: 19:59

Yeah, tell us more about that, because that's that must have been such an eye opener, for sure.

Sami Rigby: 20:05

It is. It is a bit strange. One of the fears I had was would I be hearing normally in my good ear and then electronically in my bad ear, and would it be distracting? So when I'm talking to people, will I hear a robotic sound on this side and a normal sound on this side? That's not the case. So I think the brain kind of meshes the two sounds together. So they're they're relatively seamless from quite early on. I found, anyway Initially the sound is robotic, like you know, like an 80s robot, hello Blaze, like that kind of sound.

Sami Rigby: 20:40

Yeah, yeah, it's like a reminder of 80s robot, so it's not ideal to start. Some people say it sounds like Mickey Mouse or people have you know, helium voices. I didn't have that, it was just robotic for a bit. And now the sound sounds to me as if someone's speaking through a microphone. I guess is the best way.

Sami Rigby: 21:01

You know, when you're at a wedding and someone makes a speech through the microphone, you can hear them, but it's got that different quality of sound to it than if they were speaking to your face. That's sort of how it sounds. So it's not perfect, but combined with the normal hearing on this side it kind of meshes and it gives me back, you know, that full 360 kind of sound, because that's the weirdest part, when you don't have anything on this side it's just like a big vacuous space. You know, on the left side of my body I can't hear anyone come up, you know on that side. So it's dangerous, you can't locate where sounds are coming from. So it kind of gives you back all those kind of things which are important.

Blaise Delfino: 21:41

I'm curious to know. So, understanding that you've talked about some of these strategies of just letting your friends know ahead of time. Listen, I'm probably not going to stay the entire time, but let's just say you and your husband go out to dinner and it's in a noisier restaurant. What has that experience been like for you, Sami? Understanding speech and noise. What's that like now? Look?

Sami Rigby: 22:04

it's better. It's not perfect, though I'd love to tell you that it's amazing, and you know I don't miss anything. That's not the case. It's better than my natural hearing, of course, which is none on this side, so it's obviously better than that. The good thing about the CIs now is that they're you know the one. I have a cochlear brand and we have an app, the Nuclear Smart app, on my phone, so if I'm in a restaurant setting I can hit a little toggle called forward focus To what that does and I know hearing aids have this as well. It will kind of shut down the sound, but behind me and kind of direct it, you know, coming straight to me, so that helps. There's also mini mics, which I don't know where the hearing aids do. They have those little mini mics.

Blaise Delfino: 22:46

So they have remote microphones where, yeah, like a spouse or a friend, could wear it on their shirt, put it on their table like a table microphone as well, and then it streams the voice right into the hearing aid. So you use one of those then with the CI.

Sami Rigby: 22:59

You can have that too. Yes, I have a little mini mic and then I can hear him, so that's another strategy. But I think in noisy environments I feel like when you have hearing loss, when you head into a social situation, you can be filled with a bit of dread before you're going in. You can kind of build it up in your head Like this is going to be terrible, I'm going to have a terrible time. But sometimes if you just kind of go with the flow, you actually have a good time. You just have to maybe try and shift that mindset, like and you can always leave early if you need to, and I'm very specific about where I'll sit on a table, so I'll. Yeah. When I arrive I'll be like oh sorry, I need to sit there, you're in my seat, that's the seat I need to be in that seat, has Sami on it, and that's where I'm sitting.

Sami Rigby: 23:50

Yes, and all my friends are like oh sorry, sorry, that jumped up.

Blaise Delfino: 23:54

But that's great that your friends understand that too, though I mean, they are your friends, so they're supposed to understand it. But that embrace and that understanding, that empathy is so important.

Sami Rigby: 24:04

Yeah, and it's hard too, I think, for people Blaze because hearing loss is invisible, so people kind of forget about it too, like even though they can see the implant, the processor on my head, but people do forget about it. And the other thing is people think a cochlear implant gives you normal hearing where it's not, it's assisted but it's not it's not back to normal, not back to base level.

Sami Rigby: 24:23

So, being mindful of where you're sitting and using those apps, I've also got control of my master volume, so I can turn my volume up as well if I need to. Not everyone has that.

Blaise Delfino: 24:35

I'm a bit special. I'm so happy you're talking about the applications and the accessories that work in tandem with your CI, because, yes, hearing aids have that as well, but in today's day and age, with the implementation of advanced technologies more so in your case, the CI plus these accessories what you're doing is increasing your overall speech understanding, and this is really the message that we want our listeners to walk away with. Sami, is that number one? Your hearing loss is different than everyone else's. Now it could be the same on the audiogram. You could process sound so differently compared to patient X, y and Z. So I love that you've shared with our audience.

Blaise Delfino: 25:25

Setting realistic expectations with you and your hearing team is really important, and not comparing yourself to others who maybe wear the technology of well, they seem to be doing so much better than I am. It's not a sprint, it's accepting of. This is how I now communicate, but I'd love to hear that you are using these accessories because, again, increases speech understanding, decreases listening effort. And, speaking of listening effort, when you start to feel that fatigue come on, what are some strategies that you implement, even if you're out? I mean, you've already set the boundary with your friends, but what does that feel like that listening effort? Do you feel it? Come on? Is it all of a sudden rush? What is that like For me?

Sami Rigby: 26:13

I'm one of those people that you know I'll just kind of keep going like in front of other people. I'll be like, right, yep, you know I'm fine. And then I'll get home and I will whip that CI off and I will get into my bed and I will have a, have a little lie down and I don't need to have a sleep. But I need to just close my eyes and I actually use an earplug and I'll block my good ear. Okay, I just need to have no input for a bit. So it might just be I lie down quietly for half an hour, I'll fall asleep. So out in public, I just, you know, I've always got my game face on. So that's how I operate. But when I get home, I get the, I get the implant off and I uh, yep, I have a little lie down.

Blaise Delfino: 26:54

I love the vulnerability there and you know, thank you for bringing up the earplug and the hearing protection.

Sami Rigby: 27:00

Yes, cause you, you have a brand of earplug.

Blaise Delfino: 27:03

We, yes, we, um. In graduate school I developed a adjustable earplug. It's called the fader plug. So we, um, we are very close to the finish line of getting this in as many ears as we can. So it is a mechanical adjustable earplug and um, it's called fader plugs. So we are very adamant about raising awareness of protecting your residual hearing, but also protecting your hearing in general. Sami, when I was practicing full time fitting patients, I would always ask do you mow the lawn? Do you go to concerts? Do you do any loud activities? Because while I'm fitting you with hearing aids and hearing technology, we also need to talk about preserving your residual hearing or the hearing that you do have left. Share with us what you do. I mean you're active. Do you go to concerts? If you are going to a concert or show or even a loud environment, are you protecting your residual hearing in your good ear?

Sami Rigby: 28:04

I love to tell you that I wear an earplug when I go to concerts, but I just don't, because I just love to hear it all. Uh, look, I do go to concerts, but my sleep.

Blaise Delfino: 28:15

Well, thank you for your honesty, Sami.

Sami Rigby: 28:17

Yeah, I'm sorry. I would love to say I use the earplugs for sleep, though. I use, uh, an earplug for sleep and when I need kind of downtime from hearing. But look, I probably should, but I don't.

Blaise Delfino: 28:30

So next, check in what we talk to talk to your ENT, your your audiologist, and talk about custom musician earplugs. So when you do go to concerts, we're going to protect that residual hearing. Many of our listeners are either cochlear implant users. They might have a child who's just been diagnosed with hearing loss and their child might need to be implanted. Can you tell us about your experience in terms of acclimating to the CI? I know you talked about the activation process, but when we talk about the acclimation getting acclimated to your new hearing world how long did that take you? Because you had said at first it sounded very robotic and over time it became more natural. So your brain was starting to acclimate. But what was that process like? Did you ever feel annoyed, pissed off, like what were some of those feelings and how did you?

Sami Rigby: 29:32

cope Well. When I was activated, my uh audiologist my cochlear implant audiologist said to me he wanted me doing three hours of rehab a day, which you think, oh, that's easy. But when you first have your CI activated it sounds like a garbled mess. So, if you're so, he wanted me to stream music. He wanted me to stream audio books. So I would stream audio books and I would read the book while it was streaming and, honestly, the first couple of weeks I would stream the book and I just couldn't. I just couldn't make out nothing. It was just like a garbled mess, just gibberish.

Sami Rigby: 30:11

And then I would hear like a random phrase, like have a nice day in the middle of a gibberish, and I'd be like what? And then the next day I would listen and I'd pick up a couple of other words, like just random words, in amongst the gibberish. So it's, it takes time. I was told by my surgeon and my audiologist that it could take two years for it to sound good. The problem with single-sided deafness is that the good ear will always try and take over because it's it's stepping up Right, it's gonna, it's gonna, you know, look after everyone. So that's difficult. So with my rehab I would block my good ear and then I would stream or, you know, listen to TV shows or books or podcasts or whatever. It was trying to take the good ear out of the equation to make this side work harder. I don't know whether it was because I was implanted so quickly after losing my hearing, but within I remember within two weeks, I could listen to a podcast and pick up probably 80% of it.

Sami Rigby: 31:13

So it was it was a very, very quick turnaround for me and when I spoke to my surgeon he was like that can't be true, it can't be true. And when I went to the audiologist he rang the ENT and he said it's true, she can hear, Like she's hearing all the things, because he would stand behind me and say the words and I got them like literally all right. So for me it was a very quick turnaround but, having said that, I did do the three hours rehab like every day for probably three weeks until I was just sick to death of it, and it did help. There's also an app called heroes, Like H-E-A-R-O-E-S. Yeah, heroes app. So you work through levels on that. So you start at the very basic one, which is just, you know, ah, ooh, you know you separate these sounds. And then it gets into all this complicated stuff where I kept confusing M and N to the point where I would want to throw my phone like it would.

Blaise Delfino: 32:07

Facial cues. Right, there's no facial.

Sami Rigby: 32:09

Yeah, it's just sounds streaming. I'm like why can't I get this? And then one day I got it and I was like I just kind of believe this is happening so most exciting things happening in my life since I've been implanted. I can differentiate between M and N.

Blaise Delfino: 32:24

It's a tough one, though it really is.

Sami Rigby: 32:26

Yes, yes, it was. It didn't matter how hard I listened. What I found with that type of rehab was do it first thing in the morning when you were fresh, don't don't tempt it at the end of the day. Yeah, yeah, I would get up and do heroes first thing when I have my coffee. That way, I had the best chance of getting through another level.

Blaise Delfino: 32:42

But that can kick in and you're, you're, you're sharp in the morning, for sure.

Sami Rigby: 32:47

Yeah, if I tried it in the afternoon, it would just end up with me throwing my phone out the windows. So, yeah, so, lots of rehab. That was one of the best apps that I can recommend for people. But listening to podcasts, particularly all voices that you are familiar with, so this is someone lost hearing later. So podcasts for me. I listened to Australian podcasts because Australian accents were easier for me to pick up than American. Same with audiobooks, ones that are being read by an Australian were easier. And the other thing I did, too, was you can slow them down, so you can slow down your podcast and you can slow down your audiobooks, so the words are coming out slower, so it gives you time to kind of Maybe hopefully pick up a few extra words, but it's a. It's like you said before it's it's. It's a marathon, not a sprint. Like it's a. You've got to be prepared to put in the work. You can't just stick it on and off you go.

Blaise Delfino: 33:40

We so appreciate your vulnerability and your willingness to share. You know what worked for you, what didn't work for you, and it sounds as though and it looks as though you took a traumatic experience truly and and you embraced it. And when we talk about Advocacy, Sami, and, and this community that you've built is so incredible. How has your journey, specifically your hearing journey, influenced your advocacy work or involvement in the hearing community, and Are there any specific support groups or resources that you've personally found valuable?

Sami Rigby: 34:20

Yeah, when I first lost my hearing, the first place I headed was Facebook. I think a lot of people go straight to social media and I'm looking for hearing loss support groups and many as support groups and you know every other group you can think of and they're a good place initially to land. You know you can do a post and people kind of understand what you're going through. So that can be good. But I found over time because I am who I am and my kind of process things and Move on, I found those groups could be a little bit negative, as in there are a lot of people that were very down about their hearing loss and they couldn't quite move past it and I.

Sami Rigby: 34:56

There's nothing wrong with that, but for me Because it takes a different amount of time for everyone to process these things, but for me I didn't want to be around that. I needed to be around more uplifting kind of stuff. So that's why I started my Instagram page, because I thought there's no one out there who, well, I couldn't find anyone who had documented from where to go from before surgery to after surgery, and I wanted to keep it positive and I've always been very honest on on the page like. There's days we're obviously, you know, when I've had bad many as attacks and things. It's not pretty, but I like to keep it positive as much as I can because it's it's not all bad and there are lots of good things to to come out of it. So for me, really, instagram has been a great. Like you said, look, it's a great community of people, very, very caring people. Never come across a troll yet, which is wonderful.

Blaise Delfino: 35:46

It's because you're so positive you're, you're putting out these positive vibes, Sami, and you're real.

Sami Rigby: 35:52

Yeah, well, hopefully that must be it. So, yeah, it's. It's about me. Advocating is about trying to provide level of comfort for other people who are going through the same thing, even if they're on the other side of the world and I talk to people from all around the world all the time. And the other thing I want to do, too, is educate hearing people about the kind of challenges that people you know with hearing loss face, because it's so hard for them to understand. Like I would not have understood three years ago, before this happened to me. I just wouldn't get it. Like, for example, single-sided hearing loss people go, but you still got one ear. It's like, yeah, I do, but it is a maiden pairs because they work together.

Blaise Delfino: 36:29

Like when I was in graduate school, my audiology professor, dr Susan Dill Smith Miller for our audiology class. She sent us home. She said, okay, wear these earplugs for at least eight hours. And it was a simulation of wear the earplugs and like go shopping and share your experience?

Sami Rigby: 36:51

Yes, I love it. I think everyone should do that put, put.

Blaise Delfino: 36:55

The phone is in the right way and then go about your day, try to take that team's call. You're gonna get frustrated. Frustrated, absolutely. Yes, I think it was a great you know a great exercise that she implemented and still implements.

Sami Rigby: 37:09

Yeah, I love that. I love that because what one of the things. My mom Struggle with my decision to get a cochlear implant. She was like oh, you know, I don't think you need it. I've seen you when you're out, you're fine, you know you, you, you, you're fine. And I'm like I'm fine because I am just, you know, game face, right, of course I'm fine. I'm gonna sit there crying into my wine over the fact that I can't hear everyone. But one of the things- especially good wine.

Sami Rigby: 37:34

Sami, right, one of the things I said to my husband she needs to go and block any and then go about her day. And you see how you go. Go into a shop and ask someone for help, go, and you know like all of these things become daunting for you when, when you have hearing loss and people just will never understand that until They've lived it, and and that's like with anything in life, isn't it? You know you have to have lived experience to really get it. But that's a great thing, that that I made you do.

Blaise Delfino: 38:00

Oh my gosh, yeah, and and it gives you perspective, Sami you know we are. We are nearing the end of this episode. This conversation has been incredible. We were so excited and honored to have you join us and we don't think that this is the last episode You're ever gonna do with us, Sami, because we'd love to have you back in the future for sure. Can you share with us in closing any personal stories or moments of triumph related to your hearing journey that you know have either Inspired you or brought you joy? Because, as you had said earlier, everyone's hearing journey is different. When you are diagnosed with hearing loss, you are going to process and grieve that information very differently, and I think that is the theme and message of this episode specifically. Everyone handles these specific moments in life differently and it's okay how you handle those, but you specifically Celebrating some of those wins.

Sami Rigby: 38:56

So any personal stories or moments of triumph related to your hearing journey that you know inspired or brought you joy well, the thing and I feel corny when I say it the thing that brings me joy is people reaching out to me on Instagram, sending me messages and Telling me how much my content has helped them and telling me that, you know, they don't feel as afraid or they don't feel as alone. That stuff brings me so much joy. Like, actually, I get teary when I read some of the messages I get, and I get them from all Around the world and people write me almost novels, like you know, the start of their hearing loss, all the way and I read every single one and I respond to every single person. Thank you, cause yeah, because I feel it's so important that they don't feel alone.

Sami Rigby: 39:38

One of the things I do on my Instagram, and you know, is that I take a lot of photos so people can see my Process. I never, ever, cover it with my hair. I always wear it out there and and I've had, you know, teenage girls messaging me saying you know, I Want to be like you and I want to be able to wear my processor. I'm gonna wear my hair in a ponytail today and these are little tiny things, but if I can make someone feel less self-conscious about Wearing their implant if I can make them feel less afraid about going and having their surgery. And there's actually. I have several people who have gone ahead with surgery now because of you know, talking to me and have said you've made me, I'm doing it now and I'm not into forcing people to do anything?

Blaise Delfino: 40:17

Sure, you're, but you're assisting them in making an educated decision, sharing your experience, and they've, of course, consulted with their family and audiologist and or ENT, for sure.

Sami Rigby: 40:28

Yeah, of course, but it's obviously has helped to, yeah, demistify, make it a bit less scary for them, and that just makes me happy place. I just I like to help people, so I didn't have anyone really there to help me. You know, I had those few people I talked to on the phone, but I didn't have anyone like this on Instagram. So that's the whole idea of it just to be useful and help people really.

Blaise Delfino: 40:49

Sami, before we sign off, do you have any final thoughts or words you would like to share with our audience again? You do have that Instagram handle. It is @deaf jam sami. We're gonna put your handle in the show notes, but any final thoughts for our listeners?

Sami Rigby: 41:05

Just, you're not alone. You're not alone. There are, there are people out there who are going through a similar thing to you and you know you reach out, you can connect, and that support is is can make it a whole lot better than than you think it is. So, yeah, you're not alone.

Blaise Delfino: 41:18

You're tuned into the hearing matters podcast, the show that discusses hearing technology Best practices and the growing national epidemic hearing loss. Today we had Sami Rigby, who is a cochlear implant user Presents with Meniere's disease, and she shared her experience as she navigated through this new hearing world. Until next time, hear life story you.