Spinning Plates with Sophie Ellis-Bextor - Episode 53: Helena Merriman

Episode Date: January 24, 2022

Helena Merriman is a radio and podcast producer who discovered she was going deaf when her second child was 4 months old and she realised she wasn't being woken up by him crying in the night. She was working on her podcast Tunnel 29 at the time and found great solace in her work. She now has a BBC Radio 4 series 'Room 5'. It's based on her conversations with other people who have gone into an anonymous consultant's room, where they have received a shock diagnosis which has changed their lives forever.We talked about how pregnancy fast-tracked her otosclerosis, how an operation to improve her hearing left her with extreme tinnitus, and how her children have adapted to her hearing loss. She also shared some tips about living with tinnitus, which will be very welcome in our household where my husband is also adapting to living with tinnitus. Hosted on Acast. See acast.com/privacy for more information.

Hello, I'm Sophia Lispector and welcome to Spinning Plates, the podcast where I speak to busy working women who also happen to be mothers about how they make it work. I'm a singer and I've released seven albums in between having my five sons aged 16 months to 16 years, so I spin a few plates myself. Being a mother can be the most amazing thing, but it can also be hard to find time for yourself and your own ambitions. I want to be a bit nosy and see how other people balance everything. Welcome to Spinning Plates. Those are Gecko and Owlette. Hi guys, this is actually really risky and I'll probably regret this. I really said not Gecko. It's definitely Gecko and Owlette. Hi, guys. This is actually really risky, and I'll probably regret this.

I really said not Gecko. It's definitely Gecko. No, it's not. This is Gecko. Okay. But I don't know when... I haven't really managed to find any time to myself,

so I'm trying to do the intro of the podcast while I build... Oh, my gosh, Mummy! Somebody killed me! Sorry, Jessie. That's a game he's playing. While I build a train track and while I name characters to PJ Masks,

I'm going to keep this fairly brief because I think your tolerance for this... This is okay. Okay. Might not lock. Can I get... Well done. Tolerance for this style of introduction might not last very long. It's funny because I think when I started the podcast,

I used to do things like this more often because it was lockdown. So I'd be like in the garden trying to speak to you while I was pushing the kids on the swings and stuff. And then I kind of... I'm actually talking to anybody who's listening to my podcast, Jess. Stop talking. I'm aware. Are you game? No onto my phone because I'm a very professional person. No I can't see it. It's here it's balanced on the toy box. This week's guest is a really lovely woman who I'd never met before she came and talked to me. No stop. I'll stop in a minute Mickey, no. Mickey, look what I've done with this train track.

Ready? Look, put the yellow one on there. Good boy. But as soon as she came round, we started chatting, and it was a really natural flow, and I felt like I could talk to her for, like, hours. We have things in common that I didn't realise, like the fact that we both love horror films,

and also a thing in common that I didn't realise, like the fact that we both love horror films, and also a thing in common that I knew but Helena didn't, which was that we both have tinnitus in the house. So Helena has been suffering with tinnitus, acute tinnitus, for the last couple of years. So this actually is quite impractical, isn't it? That's lovely, Mickey. And my husband, Richard, has been suffering with tinnitus, acute tinnitus, for about nearly a year now. So we had chats about that. And Richard had a good chat with her about it

because I think the thing about something like tinnitus, an invisible... All right. An invisible, unwelcome visitor in your life like that is that no-one can see it, no-one knows you're dealing with it. But similarly, you don't know who else is dealing with something like a hearing issue, and so you don't know who the people are that you can talk to about it, particularly in the midst of the early bits of your um yes jesse

i know i know you've told me that i think we should do i forgot um i think we should probably book you a hearing test actually jess um what does that mean i'll take you to the doctor and i'll just check your hearing and see see if everything's tickety-boo. Anyway, I really liked Helena. Mommy, stop! I will stop in a minute, Mickey. No! That's too loud. That's too loud.

Mommy! All right, I'll stop. Yes, Jessie? Today's the first time I'm going to edit because I just made it so that I can edit. That's brilliant, Jessie. I want crisps! Okay, I'll get you some crisps. All right, I'm going to get it now.

This is a ruse, guys. I'm taking the phone away. Yes, so what do I want to tell you? Well, I've got 30 seconds. I want to tell you that the reason I wanted to speak to Helena is because I started listening to her new podcast, which is called Rim 5. It's broadcast on Radio 4,

but you can also download it on BBC Sounds. You might already be familiar with her podcast because she did one called Tunnel 29. It's been downloaded over 5 million times. It's a massively successful and very, very brilliant podcast all about some people who escaped from one side of, well, tunneled under the Berlin Wall, basically. Sorry, I'm talking in such a distracted way. But anyway, she's got a very lovely talking voice

and a name that is a joy to say I mean Helena Merriman it's actually really lovely to say out loud try it you're gonna like it but you will like our chat even more so I will see you on the other side and in the meantime I'm going to get some crisps and I probably won't attempt to do this style of outro, or will I?

Am I feeling bold today? Will I speak to you again from the playroom? Yeah, so do it. Why not? See you in a bit, guys. And I was thinking, where shall I start? But I think we will end up in the present day with your new podcast about shock diagnosis, Room 5. I think we'll end up with that.

Maybe we'll go back in time first. So you have two children. So how old are your kids? Eight and I always forget the age of the second one. Almost five. Five in a few weeks. There we go. Cool.

Don't worry, that continues i think doesn't it that feeling of like how old are you again i've only got two so i'm one of five my dad would always forget uh he would always sort of struggle with the names and then he would just go number four yeah i can actually completely understand that richard's a bit like that he gets there yeah um at school wrong quite yeah consistently i don't think he could do you know those forms where you have to fill out like um date of birth yeah i can do it quite. I don't think he could do, you know those forms where you have to fill out like date of birth. I can do it quite quickly now but I think he would spend quite a long time

trying to remember when they're birthed. I can imagine once you get to the fourth and the fifth you start to struggle. Yeah, it's true. The pattern slips. Nothing makes any sense anymore. They're all interchangeable. Where are you in the line-up with being one of five? I'm number four which I always kind of was a bit gutted about because I thought you don't really get a sort of syndrome with that

because you don't have the oldest child thing. You don't have the youngest child and you don't have the middle child. So you've got no excuse for why you're slightly odd. I don't know. I objectively think four is quite, if you're going to be like quite strategic, that's the one I'd pick because you're one of the cute little ones. Yeah. But you're off the radar because you're not the actual baby.

Yeah, that's true. You're not the last one left. Exactly. And you're not the pioneer who's having to strike out. So maybe I did all right. Yeah. I chose well. Yeah, well done. Thank you.

And what was happening in your life when you had your first baby? What was happening in my life? I had just finished working on a program that i'd co-created at the bbc called the inquiry which was this incredibly intense working environment making it so it was a weekly current affairs program where we would look at a controversial subject of that week and and sort of take a listener through it. And I would interview a range of people. And I remember when I became pregnant, just feeling this sort of relief that, oh, okay, there's an out for this quite stressful working environment.

And then... Life outside of it. Yeah. And then it was interesting because I think while part of me was sort of desperate to embrace a very different life, I sort of thought, oh, it'll be coffee mornings and going for walks with friends. And there was all that and there were bits of it that I really loved. But the thing that I really struggled with that I hadn't anticipated was broken off conversations

when you're with very young babies or toddlers in a cafe and you're you're with friends and like you know I'd be going out with a like local mum or whatever and you'd be desperate to talk about something but it's like oh well uh just got on the floor just got to get something out of their mouth oh there's a poo sliding out of their leg and after yeah after about seven eight months I I found that bit really hard and I still remember my first day going back to work and just feeling so just elated to be having a conversation I remember sitting next to my friend and we had this half an hour conversation I mean you know it wasn't about anything particularly uh intellectual but just to be able to have a

half an hour conversation uninterrupted just felt amazing. Yeah, it's a luxury you don't know you have until it's not there at the time. And something that you realise you need as well. And I think I hadn't realised that. And I remember there were times when, particularly in those early stages when they sleep a lot, where I remember feeling just a little bit bored. And I remember saying that at one point and this other mum kind of looking shocked and saying, my gosh, you're bored, but isn't it just amazing seeing your baby develop and change? And of course it is. You know, it's amazing seeing that.

But I, yeah, at moments I did feel bored and I felt very guilty about that. And it's only recently that I found other mums who have felt something a little bit similar yeah I think that's I'm surprised the other mum was quite I mean of course it's wonderful seeing a baby develop but you don't do that like every minute of every hour yes just like watching paint dry exactly it's enough just to watch you sleep every day when you're not keeping me busy with everything else. Yeah. And actually, you kind of summed up basically why I wanted to start the podcast in the first place, actually, because we started these recordings, Claire and I, when it was the beginning of the first lockdown.

We didn't know that was what was going to happen, but that was actually what was going on in the world. Literally, as we were sort of the first couple of interviews we did, it was the time when you kind of, is it okay to go around people people's houses lots of hand washing um is it okay if we hug goodbye at the end all that sort of weirdness and then they became the best and only full conversations I was having for like the next you know whatever it was 18 months two years pretty much of just even when I was trying to get back to work and everything just I can if I'm recording I can speak and we will finish and we can dig in and it's lovely yeah it's such a good point I mean even us now

here sitting in this room it's so lovely to just be in the same room and be in a place where you're not going to be disturbed yeah and you know it's almost it slightly reminds me of therapy well actually I think there is a therapy in it those conversations even the ones that you said you had with your friend when you got back to work and it was half an hour of just chatting. For me, that is my counselling, all of that stuff. All the casual exchanges are all part of it and they're really valuable. Yeah, yeah.

And I've listened to so many episodes of your podcast and I love it because there are so many things that people have brought up or little moments of vulnerability or little life hacks or just those those small sort of everyday moments where you hear it and it resonates and actually like the best sort of therapy it makes you feel a little bit like you're not so weird for feeling the things that you do so it's a really special thing those just those conversations

yeah and it's always been really nice to me that I get to kind of be a bit nosy with people actually and find out where everybody's feeling I suppose like everything you kind of start things and sometimes understand the reason you're doing it as you're doing it I think I think actually even now I'm nearly 18 years into motherhood there's still bits of it where I think is it all right that I do it this way is it all right that I feel like that that sometimes still sort of giving myself permission to, yeah, have motherhood the way that feels right to me, really. Totally. And, you know, we were talking a bit before about how,

you know, I think I grew up at a time when we often didn't feel it was OK to feel certain things and we would try to sort of squish down uncomfortable or difficult feelings. And I think one of the big revelations for me as a mum, I think, has been learning that I don't have to do that. So, you know, there were quite a few traumatic things that happened in the first few years when my oldest was born. So her birth was quite difficult.

I broke my coccyx, so it was incredibly painful. What, just before you had a baby, you broke your coccyx? No, giving birth. Really? She was very big. I don't think I knew that was possible. Yeah, yeah. Oh, poor you.

That sounds awful. Yeah, see, I became one of those people who takes one of those cushions to work with a hole in the middle and tries to style it out. Like now I think I would do it. I think we're so much braver at talking about these things. I think now I would do it and not be embarrassed. But I remember at the time just feeling so embarrassed that I had this special cushion that I had to sit on all the time.

And yeah, it was incredibly painful for quite a long time. And so I just asked a question. Did you know that they say like, we're going to have to break your back to have your baby or is it just no it was just she came out yeah yeah because uh she was almost 10 pounds wow and a very large head and yeah it's it's relatively common as i discovered on various websites when i was googling around about coccyx uh coccyx is breaking and uh yeah and and there are various other things that happen that year and and so often I would try and sort of squish them and try and be that sort of happy

mum that doesn't really say anything and I think over the last few years I realized that actually when you when you can name and share an emotion with your children it sort of becomes less terrifying to them and they understand why you're in a particular mood that day or whatever and it doesn't have to be a sort of huge right let's mummy deliver a one-hour lecture about her feelings but just just naming it has been a really powerful thing to be able to do yeah definitely and I think um that whole thing of there's such a rush of things that happen when you have a baby however they come into the world that whole thing of there's such a rush of things that happen when you have a baby however they come into the world that you're the bit where people reflect about birth and any other things that happen to

your body during that time almost kind of a bit lost in the wash because if you've got a healthy baby at the end of it it's like well all's well that ends well totally and sometimes you know I've got really close friends I didn't find out until so it's quite a significant amount of time later that maybe something really terrible and traumatic happened. Maybe something physical, maybe something that's changed. I mean, I've got, I don't know, one girlfriend that had really bad prolapse and she didn't tell me for a really long time.

And I was thinking about, like, that must be so lonely. You just, no one's going to know, no one's going to ask you. I'll just say, oh, your baby's here. Let's have a look at your baby. How lovely. And you're thinking, well, yeah, it's great. Of course, that's the right emphasis, but I don't really know where I am in this all this time and it's that horrible weird feeling of like not really knowing which way's up for a little while and am I the same person I was before this baby was born and what what's important to me now and

yeah is it okay if these things are still important to me yes all of that and did you always plan on going back to work yeah yeah yeah and so with the foot with my first I went back relatively quickly when she was about I suppose eight months old which I suppose for someone listening in America wouldn't sound that quick because I know the maternity leave there is often very short um and then I I was working three days a week and and then went up to four and I loved that balance I actually found and I still do I still I still love the balance that you have if you can combine work and being a mother which I know isn't always something that everyone can do but I tend to get quite obsessive about whatever it is that

I'm doing and what I've been making podcasts in the past, you know, I can get to the point where I'll just obsessively work on it evenings, weekends. But having to then come home and be there for bath time and suddenly being like doing raspberries on their tummies and splashing water around. I find it really just pulls me out of my head and it stops me from over obsessing about work. And then the same thing, I think if I if I perhaps didn't have uh didn't have a job I can imagine I might slightly over obsess about the mothering side so I I love that balance yeah no that's a really good way to put it actually and I think also that thing of being able to go to work and get really focused and bed in and use bits of your brain that lay dormant the rest of the time is a lovely feeling isn't it when it all kind of expands and fires up again?

And did you feel like everything kind of came back quite quickly when you went to work and could get it all fired up? Oh, gosh, no. Like, I remember, I mean, in a funny way, I think I remember feeling more brain fog when I was pregnant, actually, and just feeling like I wasn't quite there. And maybe it was things like just having a massive tummy and not being able to get close enough to the mic

or just practical things like that. But then I do remember going back and thinking oh is my brain going to be working in the same way that it was and I remember I think one of the first programs I did was all about sanctions in Russia and I was interviewing this Russian economist and his accent was quite thick and I think by that time my hearing was all also beginning to go and I remember sort of straining to hear what he was saying and thinking oh am I you know am I on it and you know a few times feeling like I wasn't sort of coming up with those questions as quickly as I would be but sort of feeling that's okay it's going to take a few months to to get back and it's one of those things that I think you notice, but no one else does.

Yeah, and it's quite good to be... Or you heard they don't. Yeah, well, it's quite good to be forgiving with yourself, actually, because that thing of questioning your sharpness, it can be... It can sort of get very distracting and actually cloud your ability to think about other stuff anyway, just giving yourself a bit of space.

And no matter who you are and what you're up to, nobody's going to be finding that every day they're feeling like really well-oiled it's like there's lots of things that happen um and lots of things that are going on behind the scenes with people that you don't know and sometimes when someone else feels like seems like they're really on it yeah you can find out later that actually there was a myriad of things in their head making them feel paranoid and useless as well it's like that we're all you don't just don't really know do you yeah um but you mentioned your hearing and obviously that's something that became much more center stage after

your after your second baby yeah exactly yeah yeah so that was when my second was about four months old and I remember lying in bed one night and you know he was sort of four months so I was very used to doing those middle of the night wake-ups when he would squawk and go and figure out what was wrong and then I remember waking up one night and then my husband wasn't in bed next to me and I thought that's strange where's he gone and then I looked up and saw him he was on the baby monitor and he was holding our four-month-old and I thought why did I why did I suddenly not hear him? And it kept happening over the next few weeks that I just wouldn't wake up when he cried. And then during the day when I would see friends,

I noticed that I was doing a lot of lip reading. And if I was somewhere busy or a noisy cafe, I was really struggling to hear. And for a while, I didn't really do anything because I thought, actually, it's quite nice to have my husband doing the middle-of-the-night wake-ups. up you think maybe you might just be sleeping in a different way chronically yes exactly you know four months in yeah you know the hormones are wearing off so you're I don't know all of that and I and I didn't really want to think about it as well

yeah exactly so you're you're going to be tired and then eventually I went to see a GP and they referred me to an audiologist and I remember remember sitting in one of those booths that other people probably know, where you sit there and you have a little joystick and kind of desperately, the sort of, the student in me desperately wanting to do really well and hear all the noises. And I remember the beeps starting off and they felt really clear. And I thought, okay, I'm going to, you know, I can do this. My ears are still working and then it they started getting quieter and I remember looking through the glass and I could see the audiologist and he was still looking at the screen and just realizing that the beeps were still playing but I couldn't hear them anymore so was he testing one ear and the and the other ear

yeah and is this the one where when whenever you hear a beep you just click exactly I've done those tests have you yeah a long time ago now but the little joystick. Exactly. I've done those tests, yeah. Have you? Yeah, a long time ago now, but I was actually not even really sure what my results would be now, but I did it a while back when, probably in my mid-twenties, I think, just to sort of check hearing. Yeah. I've given my ears a bit of a bashing. Yeah, I can imagine. Like, what's your hearing like?

I, hmm, okay, I had one experience where I think I damaged my right ear quite badly and it was nothing to do with music and it was quite an odd thing but basically I was working in in New Orleans

just for a long weekend I had a job there amazing place yeah really cool and Richard came with me and we packed loads in we went on a gator tour

we went on a ghost stories you know walk through this amazing place and one thing we did we went on a ghost stories you know walk through this amazing place um and one thing we did was went to a shooting range where you're firing actual guns yeah and it was really weird i remember getting there and and seeing a globe on the on the desk and thinking wow you spin that globe and i'm there i I'm like, why am I sort of here? You know, you're sort of zooming in like at the beginning of a film.

Like, ooh, here I am in a shooting range in New Orleans. Like, who me? Why? And in the glass cabinet, they had all these guns and there was one pink one. And I was like, oh, what a funny thing to make a gun pink. And the guy working there went to me,

you're going to love it. It's better than shopping. And I was like, okay. And I was thinking, am I? Maybe I will. Maybe I'm like bloody hell. I love this rehearsed line that he's used with any woman that comes across him.

And I was like, maybe I am going to love it. Maybe shooting is like, yes, let me do more of that. This is it. Yeah, this is it. I'm about to love this. Burning ambition. Yeah. So I walk in there and he got the big mufflers on

and a picture of, I don't know. That looked pretty good, by the way. Thank you. It just did. Yeah. Got the stance. And I fired the gun a couple of times and I was like, I absolutely hate this.

It's horrible. It's violent and really noisy. Yeah. And I was given 50 bullets. I got through 10 and I was like, I don't want any more. But while I was doing it, it was really ringing. And I think one of the headphones wasn't on properly the muffler things and um the rest of the day I could hardly hear in that ear at all it was like chronic and I'd be like clicking next to

my ear and I couldn't really hear it and that must have been quite terrifying yeah and then a few months later I went to a hotel room and did that thing of checking into the hotel room and suddenly all the outside noises went and I was in this very quiet room and then I could really hear my ear really badly and I had that slightly matter of fact thing of thinking oh well I guess that's me and I don't know if this is even true but I've been told that it's to do with the ear hair follicles bending and then wherever they're broken is the pitch that you hear yes um so I thought well that's that then there's nothing you can do about that uh but I suppose as a musician you so many people I know have got that and so many people don't really seem to be bothered by it and it's

still I still I'm part of the era of musicians where you didn't have any in there monitoring before so all my early rehearsals and gigs were just everything blaring really loud. And now I can just be a lot more careful. But now I have to have things quite quiet, and that makes me feel better. But that ear distorts. If things are loud, it kind of crackles, distorts. Yeah, because those hairs, they never grow back. And they do in animals, but just not in humans.

Really? Yeah, so animals can handle hearing damage and those hairs in your ears will grow back. But for humans, once they've gone, they're gone forever. Wow. And I suppose also people who work with sound as a key component of their day job are even more aware of how sound is being affected.

Yeah, yes, exactly. So for you, not only someone working in radio and broadcasting and putting together shows you're also is it right you have perfect pitch yeah and they'd always enjoyed sound yeah collecting sounds yes yeah I mean when I was little I had two or three dictaphones and I remember I would just leave them around the house and record stuff and so I've got all these bits of audio at home of family lunch times or arguments with my sisters or just me playing the piano or my cat purring I've got I've got hours of my cat purring it's pretty boring but I still love listening to it yeah I've still got it all that's really lovely and so I started playing

piano from very young and oboe and and I you you know, music was a big, big, big thing. And then I remember getting really into horror films with my mum when I was about 12 or 13. And like, not the kind of bloody, gory horror that you get now. Like psychological ones. Yeah, the kind of old-fashioned Hitchcock or The Omen. Yeah, Rosemary's Baby. Yeah, Rosemary's Baby.

And the music for all of them, particularly the Hitchcock films, Omen. Yeah, Rosemary's Baby. Yeah, Rosemary's Baby. And the music for all of them, particularly Alfred Hitchcock films, the Bernard Herrmann scores. And I remember we'd be sitting there watching them and when they would get very scary, she'd always pick up the remote and just press mute. And she would say, if you want to make it less scary,

just turn the sound off. And I think that sparked this sort of fascination with music and sound. And after that point, I think that sparked this sort of fascination with music and sound and after that point I think I always thought that's that's where the emotion comes in in any piece of art for me whether it's video or radio it's that sound that just the that can really bring it to life yeah isn't that interesting it is it's such a it's such a indicator of things around you without even being aware of it. And yeah, you're right, like musical scores,

they can just use it to inform you of what's coming in such a clever way. My favourite example of that has got to be the Jaws soundtrack. Yes, yes. Because it tells you how far away the danger is with how quickly the notes are going. Yes. The proximity of the semitones is almost uncomfortable,

so it already gives you that. It's just on edge, but it also is like your heartbeat. And I love the story of how he wrote that. Apparently him and Steven Spielberg were sitting around the piano and he was sort of playing, because it was John Williams, he was playing around with various ideas, and then he suddenly started playing those two notes the semitones and apparently Stephen just said yeah that's it

I mean that's amazing that's what we need it's so simple but so iconic I thought the story was that Stephen was like really opposite Stephen Spielberg came around and John Lewis I thought I think I've gone and played the two and Stephen Spielberg what you're saying that's only two notes oh right

somewhere out there somewhere out there they're both a good story to be fair maybe Steven Spielberg tells the one where he said I've got it and John Williams tells the one where he's like they need to do a podcast and figure it out

so going back to when you're having these first issues with sound and you can tell that you're not hearing the beeps what happens after that so then at first they said oh it's just a bit might be a bit of congestion go away and spray becone's up your nose for a bit and get rid of it so I kind of went for it and I did lots of steam bowls and really hoped it would go and that my hearing would return. And then I went back for an appointment six weeks later. And yeah, I still really remember that room and sitting there and this consultant had looked through my hearing tests and all my other symptoms. And he just looked at me and said, yeah, you've got otosclerosis. I'd never heard of it.

So I said, what is that? And he said, it's a hearing condition it's degenerative so you will gradually lose your hearing you've probably got it in both ears which I do I've had a CT scan which shows I got it in both and there's no cure and I I felt very out of body. I sort of felt like I was sort of watching myself take it in because it was just so far from what I thought. Because so much of the time when we have things wrong with our body, we end up feeling like a hypochondriac because so often it turns out to be nothing.

Or you're often on a path to getting back to where you started. Yes, exactly. Or you're told that with some treatment, you can go back to where you started you know yes exactly or you're told that with some treatment you can go back to where you were before yeah and I think I I asked I mean all my skills as a journalist failed me because I I hardly asked any questions partly because I was thinking right I know I've only got 10 minutes for this appointment and yeah I just remember him saying we we don't know how quickly you'll lose your hearing you could lose most of it in the next few years. It could take longer. I imagine one of the scariest words is degenerative,

just the idea of something impending and worsening. Exactly. With a speed that's just, can't really tell you exactly. But one thing we do know is that's what's happening. And we were talking just earlier about how sometimes as a mum you have to squish difficult feelings around your kids because you have to be able to operate while other things are going on. And that night was really an example of that

because I remember coming home and getting the kids bathed and dressed and doing their stories and obviously not telling them what was going on because I was still trying to work out how I felt so being on this sort of weird autopilot and then going to bed and it wasn't really till I went to bed and I remember just lying there and there was something about lying there in the dark so not being able to see anything and then just sort of imagining not being able to hear. And that was a real, yeah, that was a real low point, thinking, my gosh, all these sounds and music that have been such a big part of my life,

are they just going to slowly disappear? There's a real cruelty in that idea as well, of having it be so much part of your life, and then it's ebbing away. So you don't even know how to deal with that idea. Yeah, and then my job, I was thinking my whole job, I work with sound, I'm editing sound, interviewing people all the time.

Do I have to give that up? Like if I tell people at work, will they stop giving me commissions to make things because they'll think my ears don't work right? So I didn't tell anyone for a really long time. Obviously told my husband. How did your family and husband, because in any diagnosis there's many concentric circles that he's affected and that's that's hard for them to know that's going on yeah yeah Henry my husband he was he was great um very yeah very sympathetic and but I think for

a lot of people and I think probably this is true for a lot of people who are diagnosed with something, you don't always know what it is you're dealing with yet. So for me, I could still hear out of that ear. It was steadily getting worse. So it was more, I think, a psychological thing that I was just sort of sitting there with difficult thoughts churning around but also not wanting to be too much of a downer. So I didn't tell many of my friends about it at that point and then then I discovered that there was an operation that you

can do uh which basically because otosclerosis it affects the smallest bone in your body which is called the stapes and that's deep in your ear and it makes that bone grow in a slightly strange way okay and the reason I'd noticed it just after uh, well, four months after Sam was born, was that pregnancy fast tracks it. Because of the hormones? Yeah, exactly. Because of the hormones. So it just speeds up the rate at which that bone grows in an abnormal way.

Which is quite a crazy idea in itself, actually, that pregnancy hormones can have that effect on other parts of your body and other things that are going on. Yeah. And I'm part of various chat groups and forums. And all of them are recently pregnant women that's quite a scary idea isn't it that when you go through the process of pregnancy you don't actually know all these other things that have been affected yeah and sometimes I imagine if it's not something quite as clear-cut as my hearing is affected there must be things where on paper

there's like a myriad of all these different symptoms and symptoms that you don't really even know yes yeah what's kick-started what yeah because you know the effect of pregnancy on your body is huge on your hormones and we know it can lead to so many changes but you're right like those things are never discussed and I guess you know how would it be like if you're about to have sex with someone and they suddenly give you a disclosure form saying you know caution if you do this you might end up with otosclerosis or yeah you know I mean we obviously don't operate like that um but yeah so I probably for the best yeah exactly we just sort of plunge in and questions asked later but yeah I I then had to make this decision

about whether to have the operation or not. And that was a hard one because the risks were, you know, if the operation goes wrong, you could end up with a paralysed face, you could end up with losing all the taste sensations, or you could go completely deaf in that ear. So when I first heard about it, I discounted it because I thought that's just too big a risk.

And I guess if you already have many percent of people that end up with otosclerosis, then you might also be one of that percent that gets the... Yes. Yeah, exactly. And that's such a good point that I think, you know, we always think about things in terms of the numbers and statistics. And, you know, there's only 1% of us who get otosclerosis in the first place. So exactly when I thought, well, I was that 1%,

there's going to be someone who is that 1% to 2% who maybe goes deaf. So, yeah, I decided against it. But then I had an appointment about a year later, and I discovered that there was very little hearing in my right ear. And at that point, I thought, okay, I do it because there's there's less to lose so were you making tunnel 29 during this time yeah before that I was making it during it during yeah yeah did that have provide a focus or was that actually something that was did it take your mind off what was going on or yeah it was definitely a distraction I mean it was just fun going and flying out to Berlin and spending time in in you know people's homes

with them talking about this amazing tunnel and eating apple cake and pretzels and and then I would sit there with headphones and I was doing a lot of just twizzling around with the level so that I had I could hear better in my right ear than my left but also in a way a lot of just twizzling around with the level so that I had I could hear better in my right ear than my left but also in a way a lot of those interviews were done with a translator because they were in German so that helped because it gave me time to sort of the translator would translate and then I could just sort of query things if I hadn't quite heard heard right and then even things like when I was editing I'll often play around with the frequencies at which I'm editing so if I'm here if I'm struggling to hear something or if it's sort of aggravating the tinnitus that I've

now got I'll just switch the frequency around as I'm editing it and then switch it back yeah learning little tricks little tricks and also um I suppose the fact that people are talking about such an extreme experience with the Berlin Wall. That also is something where you're thinking, you're meeting these people who've survived something that changed their life completely upside down. Totally. And, you know, I'm very lucky that I, you know, my condition isn't life-threatening.

It's not painful. And I'm so aware, having just made the podcast series that I've made, that other people live with things that are much harder to live with. And, you know, I think I'm also really lucky that I live in a time when there's this operation that you can do, which is just amazing. Because I could watch, I watched the whole thing. So you're awake when this operation is happening, which is pretty.

Yeah, so you lie on a bed and you just have your, I have my right ear facing up, which is the bad ear. And then my surgeon was using this microscope that was attached to a camera and then so I watched it on the screen because I'm kind of fascinated by bodies and I was like yes I want to see it and so I watched him yes I watched him as he went down the ear canal he opened up my ear I could see that my eardrum which is this kind of beautiful like fleshy pink almost quite sort of sparkly it looks uh almost like something from another world wow and then he lifts up the eardrum he sort of folds it back and then i could see my bone this

stapes that's grown in this very weird way and he picked up this tiny pair of tweezers um pulled the stapes out and then he picks up this tiny bit of metal puts it down my ear canal and then hooks it onto the bone you know the whole thing can't have taken more than about 15 minutes how do they keep you so still if you're awake you're with lots of max richter music to calm you he said i can bring a playlist in so of course it was max richter who i'm obsessed with but then you just keep absolutely still but you're not worried you might like no they give you a bit of sedation okay sorry yeah yeah no that's a good memory so I had this anaesthetist above me who was making lots of jokes but also being quite calming not too funny though not too exactly I know can you imagine like

just just at the right level he was probably chosen because he wasn't that funny and then there's a moment where he brings he he puts the laser down my ear and I could see it and it looked like a little blowtorch and then he points it towards the stapes and he sort of blitzes it and then yeah that's the thing that he then pulls out and then he puts this bit of metal down hooks it onto the bone and it was absolutely amazing because I went from hardly hearing anything out of that ear 10 minutes beforehand. The minute he hooked it on, I could hear. That's insane, isn't it?

Yeah. I could like hear the room. I could hear people talking. I could hear the music. It was like I was laughing. I was just laughing and laughing and laughing because I couldn't believe it was that simple in a way. And poor old Beethoven, you know, he probably had it. Yeah. Oh, yes. And he has to, you know, he probably had it. Yeah.

Oh, yes. And he has to, you know, gradually go deaf and he would play Moonlight Sonata with his ear on the piano so he could feel the vibrations. You know, he didn't live in a time when you could do that. So I feel so lucky that I do. Well, yeah, and like if I had lived in a different era, I would have died with my first baby, you know.

Really? Yeah, I had something called preeclampsia, which meant I had to have him early. But it was very common in years gone by for that to be a cause of death in first-time mothers. Wow. It's more common with the first baby. Wow, yeah.

So, yeah, I wouldn't have been here. And then my first and my second babies wouldn't have made it because they needed lots of medical support with being premature. Yeah. And that's not even actually saying about bygone eras. We're talking about being in a first- country actually and access to amazing um medicine and resources and all that yeah um but i bet your surgeon guy must be awesome at the game operation that's a really good point yeah i think he's basically can hook that little

he can hook the tiny bone that no one with normal fingers. Get that little horse one out. That's such a good point. So the operation is a success for the first bit, but then two hours later, is that when the tennis starts? Yeah, two hours later, I was lying in the ward and I was really dizzy. It was like something from Inception, where you have all the floors and the ceilings collidingiding and that was okay because I knew it was going to be like

that and then suddenly it was like someone had pressed the eardrums been exactly then so your perception of exactly yeah yeah so your balance everything goes out isn't that crazy that that's all in control of all yes and now you've seen it you've seen yes yeah what tiny bits of us because it's such a big deal to lift up your eardrum you know to then and then to put it back in so you're so you're sort of ear and your brain are kind of going oh it's all right it's all right you know trying to calm down and then it was like someone pressed a switch in my ear and the sound went on this incredibly loud sound and i'd i'd long had tinnitus it's another symptom of otosclerosis very common with hearing loss as well you'd had tinnitus yeah and it was before

the it started or yeah so I'd had tinnitus for a good like five or six years but it was it wasn't too noisy it was that high pitch ringing and I'd sort of found a way of sort of living with it and got used to it partly because it wasn't loud. But this new tinnitus was unlike anything. It was like a kettle whistling, just a very loud kettle whistling in my ear. And I remember calling this nurse over and saying, oh, I'm really worried because I'd read that this could be one of the first signs

that you're going to go deaf, that the operation hasn't gone well. Oh, wow. And I was put on steroids because they were really worried that my eardrum hadn't just hadn't coped well and that was such a weird two weeks I don't know whether you've had to take steroids but yeah have you very extreme did you feel like superwoman did it like make you go

manically energetic yes but I also got I remember having a really big panic attack when I was starting because I think this was years ago now but I think it really like over stimulated me and I got a bit freaked out yeah yeah yeah yeah I think it really overstimulated me and I got a bit freaked out. Yeah. Yeah. I think it really... I mean, I remember just going on these four, five-hour long walks and then I was editing Tunnel 29 at the time, so I would be editing late, late, late into the night because you just feel so productive.

So it was quite a nice feeling in a way, but then you get to the night... You've had the wrong ones. Well, I don't know, because my ones meant that I couldn't sleep. I don't know what you were on i just had a panic attack in my summer takeaway restaurant halfway in lincoln camden the takeaway restaurant oh my gosh yeah i was gonna sit on the pavement outside yeah i wasn't productive at all rubbish i don't know what i was on i if you know when i'm feeling very unproductive i do think oh it'd be'd be nice to kick one of those in now.

But yeah, then I was on sleeping pills in the night and so it was in a slightly discombobulated state. But basically that noise has never gone. And there are in 10% of people who have that operation, the tinnitus can either stay the same or get worse. And I was just one of those 10%. Yeah, this was something that, I mean, you were speaking before we started recording with my husband, because this has been quite a big part of our lives here too. I mean, like you, the

tinnitus that you experienced for five or six years before that is something that I think Richard and I had exactly the same thing. But then he started getting really bad tinnitus last year in a way that wasn't the same as normal and was really hard to live with. So I've seen very close up how distressing that was for him. And for him, I don't know if this is what always happens, but it became quite, right early on, simultaneous that you get this sort of fight or flight panic with it is that something that you were having as well yeah the first two weeks were a very very dark

time I mean I think I just felt trapped by it this feeling that you can never get away like it's not like you can close your eyes or go to sleep because I really struggled to sleep and you feel like there is nowhere nowhere you can escape from it I remember the only place where it felt like it was something I could imagine living with was the tube and I would just go and sit on the tube and I would spend hours on there with a book just because I couldn't hear it and then I remember I'd come out of the tube and think maybe it's gone because in those early days I still thought maybe it would go and then when it's still there yeah there are times I remember asking my surgeon saying could you make me deliberately go deaf in that ear and then would

I not hear it anymore because that would be preferable just take it away yeah like I hadn't in my before the operation I thought going deaf would be the worst bit of it. But actually, the tinnitus was worse. So I think that was the biggest shock. But I got some advice that really helped me from a friend of mine. She's an eye surgeon, and she does cataracts operations. And she was saying that often when people come around from cataracts operations, they have a little black speck in their field of vision. And when they see it for the first time, they think, oh oh my goodness how am I going to cope with that for the rest of my life it's going to drive me mad and then she said but the fascinating thing about the brain is that it habituates to the point where one day they just don't see it anymore and I remember when

she told me that I clung on to it so it was like a lifeline I remember thinking okay even if this noise doesn't go maybe my brain will start to hear it differently yeah and that really helped and I think that's true so many people who have strange things with their bodies that you can't always change it but maybe you can change how you think about it yeah definitely and I think tinnitus is a really unique one in that when, firstly, to people who haven't ever experienced it, it doesn't sound, it's very hard to imagine what that must be like. And most people might experience a ringing in the ears after, you know, if they go to a gig the night before or something.

But to actually have it all the time, unremitting, that you can hear above conversation above watching tv above radio all these things is really scary it's like a dormant kind of feeling but also i don't know if this happened with you but when richard was first really affected and looked visibly haunted that's what his face looked like to me all the time he just looked i could see it in his face he just looked completely freaked out and i remember thinking everybody else doesn't have why can't we just go be like we're watching something tv it was like a woman doing a cookery show or something like she looks happy she looks completely fine she hasn't got tinnitus she's not going to deal with this and then you have to tell yourself don't be ridiculous there's

nobody on the planet probably that gets through a life without ever feeling like walking out the front door and thinking nobody knows what I've got going on on the inside that's exactly really freaking me out it's scary yeah yeah we are all carrying something and that when I came up with the idea for the podcast it came so much from my own experience like I had the idea actually when I was coming back on the bus from my appointment and I sort of felt and I can imagine a lot of people, this might be familiar to a lot of people when you're given a shock diagnosis, that you suddenly feel like you've been funneled into a slightly different path to other people.

Exactly. And I remember leaving the room and like, yeah, having that exact thing of looking at people and thinking, oh, they're so lucky they don't have this. And then I remember sitting on the bus and looking around and thinking, actually, probably every single person on this bus is sitting with something maybe it's depression maybe it's endometriosis maybe it's anxiety maybe it's cancer maybe they don't even know what it is yet yeah

and on the other hand there's such a I think we have a real emotional and anatomical squeamishness in this country I mean my one of the episodes of Room 5 went out on radio yesterday, and it's a guy talking about his journey to diagnosis that all begins with an itchy penis. And I was really, I was quite surprised by the reaction on Twitter that so many people were quite shocked by hearing this guy talking about his penis on Radio 4. And in some ways I get it, actually, because it is quite rare to have men talking about their penises or women. I thought he was so brilliant, by the way. Yeah, isn't he? Yeah, really good.

I guess what I wanted to do is create a series where people feel they can talk in a very detailed, honest, upfront way about their body and for it not to be weird. Because, you know, we watch on our TV screens at night, you know, you think of the sex scenes that we watch, breasts, buttocks everywhere, even vaginas. And you even had in I May Destroy that scene with a tampon, which I thought was just brilliant.

Yeah, I love that series. Yeah. But then it's like on radio, we're still a bit more, on podcasts, we're still a bit more squeamish. I mean, your series is brilliant, I think, in helping to change that and having people talking about those things more openly. And I think that's only ever a good thing,

that we all start to talk more openly about our bodies. Well, that's the thing. I'm always thinking, when has it ever really been proved to be anything other than helpful? Communication is just so valuable. Although that was quite a funny bit, because I listened to the latest episode of M5 as I was walking home from school,

and I couldn't find my headphones, so I was just listening to it held up with my phone like this, and as I walked past a very busy bus stop, it was the bit about, your very lovely voice going, so they looked at John's penis and then his testicles, and I was like, I'm just going to have to keep a very impassive face here.

This is a very serious programme, guys. Hold your judgement. I mean, this guy is amazing. I love the fact that he didn't even mind me asking him why he was having erections after the operation in hospital because I was kind of fascinated by that. It's like, you know, our bodies all do these amazing, extraordinary things. Let's talk about it as well as seeing them on TV screens.

Let's talk about them and get into those slightly icky, fleshy, pussy places. Yeah, I think those conversations are definitely, we're definitely better at having them and getting better. And your podcast would definitely help. And I also love the fact that it's just called Room 5 because I think that was the room that you had your diagnosis and I think we've all had that bit when you're waiting and then you

get called into a consultation room and they're homogenized and medicalized and you feel I've always felt in those situations like this sort of very muted version of me so all the stuff about me that sort of my character I guess is sort of completely on muted version of me. So all the stuff about me that's sort of my character, I guess, is sort of completely on tone down, kept very small, so that all I am there is my medical notes. And like you, I try and be a really good patient, and I want to be clear and concise and tidy and not take up too much time, thanks.

And it's always in those rooms that you think, well, something's brought me here here and I'm about to hear something and it's either going to be, you know, what I'm hoping or something much more scary. Yeah, or sometimes, I mean, the interesting thing about this series is that sometimes the stories begin with a set of symptoms that are unexplained and sometimes they begin with a diagnosis. And I think what I find really interesting about diagnosis,

you know, I'm not a doctor, but I'm a storyteller. And I think what interests me about diagnosis is that so often they lead to really big decisions. You know, you're told you have something and often you have to make really hard decisions about treatment or not treatment or what kind of treatment. And I'm kind of fascinated by how people make those decisions that are suddenly thrust on them from nowhere.

So I interviewed, there's a woman who, she's pregnant, and she has to make an incredibly difficult decision about her baby. But then I also interviewed this guy, he's called Joel, who is American, and he's had this extraordinary thing ever since he was born where he feels himself what he sees happening to other people so if he was sitting here now and you were to scratch your arm he would feel the sensation of his arm being scratched and it turns out there is actually an official diagnosis a condition

that's pretty rare that he has and it's completely changed the way scientists are thinking about how all of us work when it comes to interacting with people and our empathy. That's extraordinary. And so it's really shone a light on, yeah, how we interact, how we listen to people. Does he find that hard? Yeah, and he's a doctor.

So in some ways he chose the worst profession. Yeah, don't do that. So his diagnosis was this profound moment of resolution. You know, he'd grown up feeling weird, like he was this strange kid that no one understood. And suddenly he's given a diagnosis, you know, in his 30s, and he's like, this explains my whole life. So there are people like that.

And, you know, I interviewed this guy who was 17 years old. He's leaving school one day and he's suddenly, the world is very, very loud and chaotic. And he starts having hallucinations and he's sectioned. And his story is very eye-opening about how we treat people with psychosis. And then did a really interesting interview with Gavandra Hodge, who's a former deputy editor of tatlo and about childhood trauma and this amazing relationship she has with a psychologist and

some incredible work they did to help her sort of come to terms with something that happened in her childhood so it's just such a it's a real range of yeah stories from physical to mental health and i guess a lot of them as well are invisible things like yeah you're hearing things where they're not something you'd recognize with someone you're about to tell if i'm just looking at them yeah exactly exactly or you know things that and to a woman who's had who'd had pain in her stomach all her life growing up and she's eventually diagnosed with something that one in 10 women uh suffer from and yeah i'm very interested in how what is that thing endometriosis okay yeah and yeah that sounds awful that's and at the moment the british government has so that the it's called the gender health gap and you probably heard that phrase and it's this idea that the way

we treat diseases between men and women really really vary and in the g20 group of countries britain has the highest the widest gender health gap really of all yeah um and so the G20 group of countries, Britain has the highest, the widest gender health gap. Really? Of all. Yeah. And so the British government has said, right, we need to do something about this because it's so much more money going to treat women's,

men's conditions as opposed to men's. So there's more money that goes into erectile dysfunction than goes into helping women with premenstrual syndrome. Wow. I think that's not right. No, and there's a lot of conversation going on about that now aren't they about women being given more agency when it comes to what should be happening for their bodies and how to resolve the issues i mean not least the

women going back to the prolapse thing all those awful stories about that mesh that was being used and then these women just yeah with horrific constant pain yeah Yeah. And what I hadn't realised until making this series was that apparently nearly all the research trials that went on all across the world until the 90s were all based on men. And they didn't routinely include women because they thought women's hormones just made those results too complex.

Oh, the work harder. So that's why, yeah, on pretty much any condition that affects both men and women, men will nearly always have better outcomes. because they're the one we've been using their bodies and their hormones and the way their bodies work to figure out how to treat it god that's extraordinary isn't it i suppose as well that all ties into things like menopause which is now being given a much more center stage in terms of those conversations i feel like those conversations weren't really happening yeah i think it's been quite a quick turn. I mean, even when it comes to,

I think another problem, and again, this is something that's admitted by the British government, who just released this report all about the gender health gap. And they were saying that another problem is that the health system is essentially being designed by men for men. And that a lot of the time you have these men only boards of various research organisations who decide what clinical trials get funding and what don't. And so, of course, you end up with more money going into conditions that affect men than women. But interestingly, if any women want to try and shape

the new sort of women's health policy in this country, they've just opened up this survey online and they're asking for any women over 16 to write in with their thoughts and their ideas on how things should work differently oh that's so you know there's a chance for people to try and shape it okay no that's really value where do people go for that then so on the government website so if they just google in government health policy um women it should yeah it should come up no that's really good to know and actually a lot of it makes sense and i suppose like even come up no that's really good to know and actually a lot of it makes sense and i suppose like even my mum said that when she went to uh the doctor the first

time about menopausal symptoms and she saw a male doctor and he said something like well some of it's just getting older isn't it and she said she sort of got up to leave and then was like hang on a minute yeah yes um your wise mum yes and i suppose as well some of it probably i mean this doesn't explain why the uk is so much worse but the psychology of women being introduced to um you know monthly pain and just sort of getting on with it and it not being something that gets spoken about or acknowledged or part of a conversation um we're just kind of quite quite good about putting up with yeah things going on for a really long time yes yeah and it's interesting as well that um apparently there's something to do with uh the hormones that we have again related to pregnancy

mean that we are often our immune systems are slightly stronger so that's in our favor but then i was reading apparently there is a good reason why the whole man flu thing exists that apparently men's bodies are slightly more sensitive to whether it's a flu or the cold because their immune systems just don't work

as efficiently as women's really so there's you know something to be pleased for mustering some sympathy

I know it's not coming very fast scraping it off the floor and how has it helped you with, so with your tinnitus, I suppose one thing is for Richard, he found meditation really helpful

and that's something you said that you found helpful too. Yeah, I mean. So I think if anyone is listening and tinnitus is part of their life. Yeah, I found it, I mean, and I'm aware that for a lot of people, they'll always think, oh, meditating is not for everyone

and I really, I was never a meditator before this. No, neither was Richard. All the tinnitus forums just say, just don't think of the noise. And that's the advice. Terrible advice. Yeah, terrible advice because of course you do. Also impossible. And it's impossible.

Yeah. And there are other bits of advice like don't drink alcohol, don't go to noisy places. So you can end up being a bit of a hermit, which is just slightly counterproductive when you're feeling crap anyway. Yeah't distract yourself don't think about it but also don't go anywhere and then don't feel like a failure because when you do think about it which of course you do yeah so I then and then a friend of mine uh told me that some guy that she'd like meditation with was coming to London and at that stage I was just trying I was throwing everything at it so I thought okay

fine I'll try you know I'm terrible at meditating I always get jangly legs and start thinking about films, but you know, whatever. And it was, I remember the first day sitting there and it was a 20 minute meditation. And with the first two minutes, I thought, what am I doing? This is the worst thing. I'm sitting in silence with this kettle whistling noise.

This is horrific. And then five minutes went on ten minutes went on and the noise was still there but I began to just notice it and I began to notice little things about the noise that it was almost a little bit musical that there were different layers to it it was almost it was almost kind of interesting and I started sort of move instead of running away from the noise I started sort of moving towards it and we did two meditations like that every day for four days and it was kind of amazing and that on the last day I remember coming home and I could still hear the noise but just not in the same way it didn't it didn't trigger this reaction of just panic and claustrophobia. I could just sit with it. And I think, you know, the buzzword, buzzword tinnitus,

the key word in tinnitus is habituation. And I think essentially it was just a fast track to a habituation that might have taken me years to get to. And habituation is when something is so familiar that you're not really thinking about it. You sort of almost learn to live with it. Yes, exactly. Which is, I think lot of a lot of people and end up doing with whatever it is they might be living with you know whether it's I don't know pain chronic pain

or whether it's another condition that they might have I think so often you know me included I was desperate after my diagnosis and treatment to sort of try and get back to my old life but you often you can't when you've had a diagnosis you have to sort of you have to kind of embrace a slightly new version of yourself yeah that's a good way to put it actually and probably that's something that is a good a good lesson to learn for all of us anyway there's always going to be things that make you have to embrace a slightly new version of yourself I think we can be a bit used to almost having for reference as who we are

probably quite an old version like a way back version of ourselves I'm still 12 I'm like 17 you made it further than me I don't know why that one should be crystallised there, I wasn't really why that one should be crystallised there. I wasn't really my best behaved, but...

Maybe that's why. Yeah, exactly. I think for me it's music, actually, that's kept that chronology with that. Oh, that's really interesting. Yeah, it's like a little time travel, I think. But what's your relationship with sound like now? External sound, not the one...

Yeah, so for a while after the tennis the tinnitus kicked in I all I wanted to do was be on the tube or watch like horror films that were quite loud or um thrillers just to distract me and I couldn't I did I stopped going to gigs or concerts I stopped playing the piano which I always used to kind of play you know every day and would avoid being anywhere quiet and now thank goodness I've got to the stage where I, you know, every day and would avoid being anywhere quiet. And now, thank goodness, I've got to the stage where I can. You know, I happily sit at the piano and sometimes it will sort of set off strange, buzzing, distorting noises in my ear.

But I'm sort of okay with that. And with some of that to do with the actual operation? Yeah, because I've got this bit of metal in my ear and it sometimes can sort of just make the odd noise. But yeah, I feel like I've, yeah, I've got this bit of metal in my ear and I sometimes can sort of just make make the odd noise but yeah I feel like I've yeah I've come back I've been able to find that person that fell in love with sound you know age five six and returned to that which is lovely because it's so much part of your life but also you know raising a young family sound is a huge part of it yeah yeah huge part but that it ended up influencing not having another baby is that right yeah so we'd we'd thought we'd kind of thought we might

have a third and when I discovered that pregnancy fast-tracked it it it sort of I made the decision very quickly that I didn't want to and And so, you know, having two children, I'm incredibly lucky and grateful to have them. And I think it, yeah, it sort of pushed us down that path of not having a third. And, you know, there are some women with otosclerosis who decide not to have any children because they don't want to risk it or might stick at one. And others who say, actually, I don't want that to affect me.

And, you know, there's good reason for that too because a lot of those operations can be very successful. So actually the doctor who gave me advice said, don't make any decisions about children based on this. You know, there's always new treatments. There's always new forms of surgery. Yeah, it's a very personal thing that anyway, isn't it? Exactly.

Very personal. When Richard was going through his ear stuff, not only did one of the kids suddenly start really playing up with, that our youngest was really noticing when he made loud noises that Richard was like, it would really hurt him.

But we also had another of our kids start saying, my ears are ringing, my ears are ringing. And he'd obviously heard Richard talk about it. And I wondered what your kids did. Were they aware of any of it? I mean, obviously you have to have operation.

They might have known about that. Yeah. And I mean, even now they always know the side that I like to walk on them when I'm walking to school because I can't really hear them out of that ear. So they're like, we've got to be on this side of mummy. And yeah, I remember my three-year-old, one of his early most common phrases was, mummy's ears, mummy's ears! Because whenever he was squawking or singing really loudly,

particularly in the early days of the tinnitus um it would be yeah I'd just be having to sort of clutch them and yeah running running out of the room holding my ears so yeah I think they've they've they've definitely had to adapt and my eight-year-old I mean she gets a little bit cross when you know if I have to say what three times particularly if she's tried to make a joke she likes making jokes and you know if I don't get it first time, she gets quite cross. I'm like, but I didn't hear it. She goes, yeah, but it's not funny

when you have to make a joke three times in a row. True. Yeah, but kids can pick up on things sometimes as well. And do you think they've, is your home quieter than it used to be? Yeah, yeah, they're very thoughtful with that. And actually my oldest, she's very good at knowing if I've, I sort of say my head's feeling a bit scrambled today,

if I've been somewhere very noisy and if I'm really noticing the tinnitus. And she can be very sweet at saying, oh, let's go upstairs because she loves putting on her, she's got a sort of fish, one of these fake fish tanks that's very nice to look at. She says, oh, let's go and put that on and we can put some calming music on and doing some stretches. So she's very, yeah, she's very yeah she's very

understanding and and sweet about knowing what helps me that is sweet and I think also kids um seem to be growing up with um sort of mindfulness and meditation tools they don't even they might not call it that yes but it's something they're adopting more and I think that'll help them yeah yeah all these things won't it totally like yoga's a huge part of her life. She loves when we do our evening yoga before she goes to bed and I do a little massage at the end. Ah, nice. Yeah, I know. Sometimes I'm like, and then when she still comes down,

I'm like, that was just a five-star put-down experience. I read you the book, we did yoga, I scratched your back. How can you still be awake now? But, no, I'm like, God, I wish someone would do that for me yeah there's lots about bedtimes though where I think someone ran me a bath yes got me some fresh pajamas can you imagine a little drink in a beaker oh like yeah my kids are funny because we used to do I used to read them a book every night and then they said actually I'd like to talk so now we have what's called talking time or drawing time if they want to draw yeah and um that's really sweet as well we just hang out and just chat about stuff i love that it's really

nice and it's that pillow talk yeah where suddenly you're lying there two humans just under the duvet yeah something so special about that exactly and the pressure of the day has gone off like all you're doing is winding down until there's a fart under the duvet until they startvet i'm hungry and you're like yeah no no it's like you know they're not supposed to be like okay i'm gonna do some toast yeah um and from coming from a family of five are there things you've taken from your childhood that you've brought into oh that's a good question your household yeah i mean my gosh there are so many things that i end up saying that i think oh that's a good question your household yeah I mean my gosh there are so many things that I end up saying that I think oh that's my mum speaking and I've I mean there's there's things that I'm fairly strict on that my mum was strict on like uh sweets and chocolate I find myself being quite strict about that and tv as well I as in I love good tv and I have this kind of stupid thing where

I say they can watch stuff if they can tell me why they like it and why it's good and then we put it on a list um but I can't just watch rubbish stuff and I think that's partly my mum you know she had quite strange rules so we weren't allowed to watch Neighbours or Home and Away but she was fine when I told her that I'd tried marijuana at age 12 and she was like well that's really interesting you're doing something interesting with your life I just don't want you watching rubbish telly. Yeah, which is kind of interesting. Because she wasn't hippie-ish at all. She was just like, do interesting things. Don't just sit there watching telly.

So of course we were obsessed with telly. But yeah, so I find myself doing a kind of similar thing. And then... I like that idea with the list of what they like. Yeah. That'd be nice for them to keep when they're older as well. Yes, exactly. And they can see how it changes.

Yeah. Yeah. I was only allowed... I was allowed to watch to watch neighbors only because my dad wouldn't let me so my mum was like oh well watch it yeah because they didn't i live in two different houses so yes yeah and then my dad would let me watch twin peaks oh but then my mum wouldn't so yes i just would watch it secretly so and but it's hard when you're, I mean, I guess where I do let my kids watch the kind of things that other, their friends are watching because otherwise it's like you lose that thing you have in common. So I remember being able to kind of bullshit partly because I couldn't watch Neighbours.

So I would like go and speak to one group of friends and kind of get the rough plot from them and then go and chat about it to another group of friends because I was just so embarrassed to say I hadn't watched Neighbours because that was the currency. No, no, everybody spoke about it. The playground. Yeah, I know. Yeah, so I kind of like, that's the source of my bullshitting.

It's clever. It's also kind of journalism, isn't it? Like, pick up that info and then it becomes currency elsewhere. Totally. That's good. Yeah, but I think it's lovely that, I suppose you've done, with all the work you've done up to now nothing's been as personal as the project you're working on at the moment yeah it's it's

it's a kind of funny one because you know normally with other programs i've made like tunnel 29 and the inquiry there's a kind of i feel like i've got my sort of professional you're a journalist yes yes and you've got a bit of armor with that because it's you're there as this sort of professional. You're journalistic. Yes, yes. And you've got a bit of armour with that because you're there as this sort of BBC person. And this one's felt so different. I think maybe making it during lockdown, so doing interviews in people's houses. Yeah. You know, I met some of the people that I interviewed

just in parks around my house. So it's felt, yeah, it's felt really personal. And I love that. Yeah, and you're both members of a club that you maybe didn't know you're going to be members of yeah that's such a good way of putting it you can start from the point that they feel safe to trust you yes and have other people spoken to you in your personal life as well about things that they haven't spoken to you about yeah I mean my goodness I find all

because I hardly told people about it at first and then I you know whenever I tell people now you know everyone sort of then replies and they tell me their thing and you realize that we're all we've all got a little broken bit of us and actually those broken things often become the things that sort of slightly shape and define us yeah and they stop seeming like broken bits they start seeming like just part parts of who we are absolutely I don't think you can get through things unscathed and if it's not happening firsthand to you then you take on all the things that are happening to people you care about as well and yes I suppose really what's at the heart of a lot of it as well as empathy and experience you know and there's always degrees of it and you know like with with Richard when he was in in the worst bits of the tinnitus you're like well I know things could be worse but you're still allowed to say this is

really tough yes totally and totally. And hard. Yeah. But there's also just the kind of, I mean, I've had so many conversations with friends and actually a lot of the conversations in the series are very funny too because bodies are funny and weird and do really inconvenient things at the worst times imaginable, like poor John and his erections and his penis with a cat in it.

It's like, it happens and we're all human and you know the queen sits on the loo like you know we all do stuff and yeah it's it's I love sharing that you know I love my sister's a GP and I've got another sister who's a psychologist and I love hearing their stories oh wow yeah things that particularly my sister who's a GP and the you know I think I said the other day how many do you have to stick your fingers up people's bottoms? I don't know why I thought of that, but it was just like, I was kind of like interested in just, and she was like, that's the most common thing I have to do.

She's like, probably I do like five or six of them a day. What? Yes, yes. Wow, I would not have thought it was that common. I know. So there we go. I had a really awful experience once where I went to the doctor for something quite intimate.

And as I was being examined, she said, I heard your song on the radio this morning. No. So I, like a right idiot, I said, well, I hope if you hear my song again, it's not forever associated with now, which of course meant that it would be forever associated with now. Oh, Wally.

That is the, you just don don't you want to be completely anonymous so you need you need to disguise you definitely don't relax me i remember having well i had mastitis and i went to get an appointment doctor and i said i did that whole thing of like have you got any female doctors on today and they said no just a man and i thought right come on yeah just like man up here and And I went to him and the guy said, right, you know, let's see the breasts. And I kind of got out this like pussy red breast. And then he was like having a look.

And then he said, Merriman, I recognize that name. And I was like, no, no, you don't. And he said, yeah, I was at school with your brother. And I remember I used to come to your garden and you'd be running around there with your sisters. And I was like, that is just the worst thing I did not want to feel any connection with you not now not here not exactly at least I've got my top back on yeah so there were a lot of things i thought about after our chat um i think there is a whole world out there when it comes to trauma of birth because i think a lot of people don't get an opportunity to

talk about traumatic birth insofar as I was talking to a girlfriend after I spoke into Helena about how she had broken her back during childbirth, broken her coccyx. I spoke to a girlfriend of mine who said that some of the friends she has who have just had babies during lockdown have not even seen a doctor after childbirth so for their six-week check they just had a phone call and I thought I bet there are a lot of people out there who have dealt with a very traumatic birth and maybe might be dealing with pain from that and they haven't actually really dealt with it so I feel like there's something in that plus I think even just normally, I don't know about you, but I've definitely had it where I've seen friends when they've

become new parents and they still look really traumatized by the birth and there's just not really much time given to that. See, still in the playroom. But maybe, I don't know. What do you think about that? Have a think. and then the other thing I thought about is how important conversation is when it comes to providing a bit of counsel and support so with Helena's podcast talking to people about their diagnosis you find yourself you know being introduced to all sorts of stories of people being resilient in the face of something they didn't the challenge they didn't know they were going to have. And I think that sort of stuff is so valuable, isn't it? Just understanding that, you know, you might be a member of a club you didn't mean to be a member of, but actually

the other members can make you feel less isolated and less lonely. Anyway, oh, there's a child walking towards me. Pick you up? um anyway thank you to you and thank you to oh sorry heavy child um thank you to Richard and uh for editing Claire Jones for producing Helena for being such a lovely guest Ella May for doing my artwork but mostly you guys for listening as ever sweets oh yeah there are some sweets in there

do you want one should we have one yeah yeah let's do it and on that happy note can you get them yeah I'll get them

I will see you next week and apologies for the slightly distracted tone in my voice oh no Mickey's just I've put him on the side so they can reach where the crisps and sweets are but he's when he's found this little flick book that I bought ages ago what can we see in the flick book what can we see in there what does she show you

it's a little flick book of like a woman a black and white um flick book what's it what's there a bum a bum that's right she does do a bum it's like a little sort of i wouldn't say it's overly rude it's kind of cheeky cheeky it's like a woman showing a bum but it's black and white so you know it's tasteful all right but you're glad you know that that's what me and my toddler are looking at right now. It's a very wholesome house. Have a great week. I'll see you soon. Lots of love. On each step with Peloton, from their pop runs to walk and talks,

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