麻豆社

听

20th February 2024

bbc.co.uk/accessall

Access All 鈥� episode 92

Presented by Emma Tracey

听

听

MALE-听听听听听听听听听听听听 He was Marty McFly in Back to the Future, Michael J Fox! [Cheering and applause].

EMMA-听听听听听听听听听听 So, it鈥檚 all over the news as to who won the BAFTAs, but I have absolutely no idea who didn鈥檛 win, because I鈥檓 blind.

MALE-听听听听听听听听听听听听 The nominees are鈥� [BAFTAs music]:

MALE-听听听听听听听听听听听听 This time the chain reaction doesn鈥檛 stop. [Cheering and applause].

EMMA-听听听听听听听听听听 There was nobody announcing the names of the films as the little clips were coming up in the nomination section, which means that I can鈥檛 access it. I don鈥檛 know who the nominations are. I could go down into the depths of an article and read all the nominees, but everyone else sitting on their sofa could just see it as it happened. And that鈥檚 not fair! So, I鈥檓 on a one-woman campaign to make the BAFTAs ceremony more accessible. I鈥檓 going to get my friends involved. I鈥檓 going to get Michael J Fox who announced who won Best Film, my disabled friend Michael. My other disabled friend who I鈥檝e actually met, Ella Glendening from Is There Anybody Out There, which was nominated for a BAFTA. I鈥檓 going to get her involved; and I鈥檓 also going to get my Irish neighbours, Andrew Scott and Paul Mescal from All of Us Strangers. And obviously Cillian Murphy from Oppheimer, I鈥檓 sure he鈥檒l get involved as well. I鈥檓 sure he鈥檒l take one for the team and campaign on my behalf to make the BAFTAs more accessible. Thank you very much.

MALE-听听听听听听听听听听听听 And the BAFTA goes to:

MUSIC-听听听听听听听听听听 Theme music.

EMMA-听听听听听听听听听听 Hello, I鈥檓 Emma Tracey and this is Access All. Now, I鈥檓 blind, but we don鈥檛 just talk about that because Access All is the 麻豆社鈥檚 disability and mental health. We鈥檝e got unbelievably great stories, we鈥檝e got amazing insights, we鈥檝e got fabulous guests. I mean, I鈥檓 telling you you鈥檒l know we鈥檝e got fabulous guests when you hear what鈥檚 coming up this week. This time we are taking a deep dive into the mind of bestselling author Bryony Gordon. Her latest book Mad Woman is out now. And I鈥檓 also talking to Ibrahima, the dad of conjoined twins, Marieme and Ndeye who, against all expectations, have just passed their seventh birthday. What a guy this guy is. What an interview it is as well. I鈥檓 really looking forward to you hearing that.

听听听听听听听听听听听听听听听听听听听听听听听听 Listen, if you like what you hear you can subscribe to us on 麻豆社 Sounds. And if you鈥檝e just come across us on 5 Live, hello to you as well. Pop onto Sounds, find Access All, hit the subscribe button and you鈥檒l never miss an episode. Right, on with the show.

听听听听听听听听听听听听听听听听听听听听听听听听 We talk about mental health a lot on this podcast, but we don鈥檛 often talk about how people鈥檚 views around the subject can change over time. My guest is a journalist and mental health campaigner, and the author of Mad Girl and The Wrong Knickers. She says that her thoughts around mental health and her approach to it have changed radically over the last few years; and her new book, Mad Woman, is all about that. I鈥檓 so delighted to welcome Bryony Gordon. Hi Bryony.

BRYONY-听听听听听听 Hi Emma, thank you for having me.

EMMA-听听听听听听听听听听 Ah, thank you for coming along, seriously. Of course I鈥檓 going to turn the tables on you now and ask you the question that you ask all of your podcast guests on your Mad World podcast: how are you really?

BRYONY-听听听听听听 I鈥檓 really good. I鈥檓 all the better for being here with you. In, like, book promo mode, it鈥檚 a bit overwhelming, but I鈥檓 sort of trying to ground myself, if that makes sense.

EMMA-听听听听听听听听听听 Yes. Because when you say the same thing so many times it probably feels like you鈥檙e dreaming. It鈥檚 like people who work on a checkout, they can hear it in their sleep the boop, boop, boop.

BRYONY-听听听听听听 Yes, [laughs] that was a really good impression.

EMMA-听听听听听听听听听听 Thanks.

BRYONY-听听听听听听 I also 鈥� I don鈥檛 know about you 鈥� but what I write about is mental illness and my history of mental illness, and so it鈥檚 really beautiful to be able to talk about it and connect with people, but it can also sometimes be quite overwhelming. And my processing of things can be, like, I can feel quite sort of stunned.

EMMA-听听听听听听听听听听 Is it ever triggering to keep talking about it?

BRYONY-听听听听听听 it鈥檚 weird, I think you kind of sometimes find yourself disassociating from it. And I don鈥檛 know how healthy that is.

EMMA-听听听听听听听听听听 So, you鈥檝e got OCD, and you call OCD Jareth, and actually we were just talking last week on the podcast about naming our access stuff. So, we had, like, stomas called Sid. Your OCD is called Jareth; does talking about Jareth bring him to the fore?

BRYONY-听听听听听听 I don鈥檛, I think鈥� Okay, talking about Jareth enables me to sort of right size him. So, I named him after the character in Labyrinth. It was a film in the 80s and David Bowie played Jareth the Goblin King, and he was kind of evil but ever so slightly enticing. And that鈥檚 what OCD feels like, or has always felt like to me. So, Jareth the Goblin King I find talking about him and calling him Jareth the Goblin King sort of right sizes him, you know.

EMMA-听听听听听听听听听听 So, it puts him in his place?

BRYONY-听听听听听听 Yeah, which is hopefully right at the back of my brain. I don鈥檛 want Jareth kind of, like, stretching out on my frontal lobe making himself comfortable, like as comfortable as I am on this sofa right now.

EMMA-听听听听听听听听听听 It鈥檚 interesting, your new book Mad Woman kind of reflects how you鈥檝e started to change your thinking around mental health. Tell me about your book?

BRYONY-听听听听听听 I wrote a book called Mad Girl around ten years ago, which was all about my experiences with OCD. And in the intervening ten years I鈥檝e learnt so much about myself. I鈥檝e got sober. We like to have this neat narrative, don鈥檛 we, of neat beginnings, middles and ends, and so I suppose people like to think you wrote your book about OCD, and then you triumph over adversity and you trot off into the sunset and live happily ever after. And as we all know that kind of life is a bit more nuanced and complicated than that. And so for me definitely during the pandemic I found that I didn鈥檛 pick up a drink, but I did develop binge eating disorder; which it took me a while to realise that that was what happened. I kind of fell back into quite a bad depression, and the OCD came back pretty viciously. And I learnt so much about myself through those episodes. I really thought I鈥檇 sort of got it licked, you know. Like New Years Eve 2019 I was like, I鈥檓 sorted, I鈥檝e triumphed. And then the universe was like, nah-nah, that鈥檚 not going to happen [laughs].

The thing I say about all mental illnesses is they thrive by lying to you and by isolating you and by telling you that you鈥檙e a freak and by telling you that you鈥檙e alone, and by telling you that no one is going to understand what you鈥檙e going through. And so depression is very vicious and you often tell yourself you don鈥檛 have depression, you鈥檙e just being an idiot. And during the pandemic it was the first time I felt depressed and I realised that everyone else around me was depressed too. And it sort of, like, jolted this thing in my head of like, what if mental illness is actually really appropriate, it鈥檚 almost always really appropriate. It was appropriate that people were depressed because we were in lockdowns, we weren鈥檛 allowed to connect with each other. And it started me off down this path of thinking, well actually what if the mentally ill, quote, unquote, among us are actually the most sane, we鈥檙e responding as we should be. And I do really believe that a lot of mental illness is your brain sort of, a very sophisticated way of your brain trying to tell you something isn鈥檛 right in your life.

EMMA-听听听听听听听听听听 But how does that affect how you manage it, how you treat it? You know, there will be lots of people with mental health difficulties listening who have had lifelong, haven鈥檛 been able to work. How does your approach affect how you go forward with it?

BRYONY-听听听听听听 So, I think that鈥檚 a really important thing. Obviously when I say that I don鈥檛 want to undermine mental illness. I know that it鈥檚 not that simple. And what I want to try to do by writing these books is to show how recovery is messy, you know, and it is not linear. And I鈥檓 sure anyone who has been hospitalised with a mental illness will understand that: you don鈥檛 just get better and then that鈥檚 that. They鈥檙e chronic health conditions basically. And for a lot of us they are really baked in because we didn鈥檛 get the help we needed when we should have done.

EMMA-听听听听听听听听听听 Partly because we鈥檙e female, [laughs] because we鈥檙e women?

BRYONY-听听听听听听 Yes.

EMMA-听听听听听听听听听听 And it鈥檚 Mad Woman. Do women get a rough deal when it comes to, say, seeing the doctor for example?

BRYONY-听听听听听听 I mean, do they? You tell me Emma! [laughter] We know this, right.

EMMA-听听听听听听听听听听 Yeah.

BRYONY-听听听听听听 We absolutely know this.

EMMA-听听听听听听听听听听 I鈥檓 like, I鈥檝e got this, I鈥檝e got a bit of anxiety. Oh, it鈥檚 because you can鈥檛 see, of course you鈥檙e going to be anxious [laughs].

BRYONY-听听听听听听 Yeah. So, the mad woman of the title, it鈥檚 a bit tongue in cheek, Emma, it鈥檚 a bit like I am mad, I鈥檓 bloody angry. So, the subtitle of the book is How to Survive a World That Wants You to Think You鈥檙e the Problem, okay. And what I鈥檓 trying to say to people is if you are mentally unwell, if you are down, if you are low, if you are experiencing difficulties there鈥檚 probably a good reason for that, yeah. Can we stop with this way that society gaslights people and sort of treats them like they鈥檙e freaks? I鈥檓 trying to say, especially to women, you鈥檙e not the problem, you鈥檙e the solution, you know. Women we live in a society that has not been set up for us. And you鈥檒l know this: you on many levels live in a society that isn鈥檛 set up for you.

EMMA-听听听听听听听听听听 [Wry laugh]

BRYONY-听听听听听听 The moment you can go instead of feeling like a freak for having mental health issues, if you can say to yourself or if someone can say to you, well actually your brain is doing what it should be doing, your brain is processing life, because it鈥檚 hard.

EMMA-听听听听听听听听听听 Yeah, and your brain鈥檚 doing the best it can.

BRYONY-听听听听听听 Yeah.

EMMA-听听听听听听听听听听 Like when you were younger you had OCD when you were very young, and you look back on that now differently.

BRYONY-听听听听听听 I definitely think that what OCD was for me, and still is, it鈥檚 a kind of safety mechanism my brain employed that's gone wrong, you know, that makes me feel less safe actually fundamentally.

EMMA-听听听听听听听听听听 But it鈥檚 hard for people to not feel like they鈥檙e freaks or out of the ordinary when they go to the doctor and they would just say, lose weight, or they would just say oh鈥�

BRYONY-听听听听听听 Yeah, I get that. It is really hard. I think that as women especially we know about the gender health gap. My experience was always whenever I go to the doctor it鈥檚 like try losing weight or doing some gentle exercise. They always say gentle as if I couldn鈥檛 handle anything more than that. And of course the irony being I do quite hardcore exercise [laughs] on a daily basis; I鈥檓 like, running, cross fitting.

EMMA-听听听听听听听听听听 Yeah, but they look at you and鈥�

BRYONY-听听听听听听 And go, no, you couldn鈥檛 do that. So, I always was dismissed for these palpitations, they were like, it鈥檚 just stress, it鈥檚 just hormones. And I鈥檓 like, where is the just about hormones, they鈥檙e the most powerful chemicals known to humankind. But anyway, it turned out that I actually had an arrythmia and I had to go to the doctor and have an echocardiogram. And he was doing my chest and he started telling me about the triathlon he鈥檇 done at the weekend, and he, like, mansplained the triathlon to me. He was like, 鈥淎 triathlon is鈥︹�� And I was, like, 鈥淚 know what a triathlon is鈥�. And he was like, 鈥淚t was really hard, I did it in Spain so it was really hot too鈥�. And I let him go on and I let him have his, you know, plaudits and go, 鈥淥h well done for doing a triathlon鈥�. And then I said, 鈥淚鈥檝e done a triathlon鈥�. And he went, 鈥淲hat?鈥� I said, yeah, 鈥淚 did a triathlon a few years ago鈥� [laughs]. And then he said, 鈥淥h, where was it? Was it somewhere as hot as Spain?鈥� and I was like, 鈥淵es, it was in Sardinia鈥�. And he went, 鈥淲hat?鈥� and I went, 鈥淚鈥檝e done two marathons鈥�. And genuinely, Emma, he looked to me and he said, 鈥淗ow extraordinary!鈥� [laughter]

EMMA-听听听听听听听听听听 And then he couldn鈥檛 get you out of there fast enough!

BRYONY-听听听听听听 Yeah. And I love defying people鈥檚 expectations.

EMMA-听听听听听听听听听听 One of the things that a lot of the papers have picked up on, mostly talking about your chorizo blackouts, is binge eating disorder. And that was another thing as well as Jareth, the OCD, that came along after you got sober.

BRYONY-听听听听听听 So, binge eating disorder is the most common eating disorder in the western world; it鈥檚 as many people as people with anorexia and bulimia combined. And in fact lots of people in recovery from anorexia end up developing binge eating disorder because, you know, there鈥檚 a good reason for that, a biological reason that if we starve ourselves our brains want to kind of compensate by forcing us to binge. But it鈥檚 also why lots of people get stuck in this pattern between restricting food and bingeing food. So, for me I realised I was eating vast, vast 鈥� and we鈥檙e not talking about, you know, a packet of biscuits or a bar of chocolate 鈥� vast, vast amounts of food, sometimes out of the bin. And it was to sort of try and calm myself really. It was the only way I knew, you know, in absence of alcohol, because I鈥檇 been sober for, like, two and a half years at that point, I couldn鈥檛 pick up a drink so I picked up the food instead. And I look back on it and I have a lot of compassion for myself because in a way I鈥檇 rather I picked up the food than the alcohol. But it was really hard, and it was as dark as the last days of my drinking were, you know, the shame, but also yeah, like blacking out, just really just numbing myself to the point of not coming round and just being in food packets.

EMMA-听听听听听听听听听听 And how do you treat that? Your body can physically survive without alcohol, even though I鈥檓 sure it doesn鈥檛 feel like that at the time, but it can鈥檛 survive without food. So, how did the treatments differ then?

BRYONY-听听听听听听 Yeah, it鈥檚 really interesting. Eating disorder experts say it鈥檚 like having to take a tiger out for a walk three times a day. It鈥檚 difficult. And obviously it鈥檚 different. I mean, I had therapy; I was really lucky to be able to have that. But often the way these things are treated if you are brave enough to go to the doctor and say, I鈥檓 compulsively eating, you鈥檒l probably get put on a diet, right. And that鈥檚 actually the worse way you can treat binge eating disorder because it gets you stuck in the restriction, bingeing pattern, right. Women often message me and say, I think I鈥檝e got binge eating disorder, I鈥檓 so ashamed because I put on weight. And I want to say to them it鈥檚 not a weight issue; it's like a soul issue. And if you go into treatment for binge eating disorder and your goal is losing weight you鈥檙e probably not going to get better from it.

EMMA-听听听听听听听听听听 So, you just have to learn how to eat three鈥� You just! [laughs]

BRYONY-听听听听听听 Well, this is the thing, like, how many of us? I got to the age of 40 and I realised I was having to teach myself how to eat properly really.

EMMA-听听听听听听听听听听 Yeah.

BRYONY-听听听听听听 And it blows my mind because diet culture is so entrenched in our society. We think we鈥檝e got better at it but we haven鈥檛. A lot of it is well-intentioned, but a lot of it is not great.

EMMA-听听听听听听听听听听 You don鈥檛 have the food addiction, you don鈥檛 have鈥�you鈥檙e a recovering alcoholic. What do you do to numb yourself now, Bryony?

BRYONY-听听听听听听 I don鈥檛 numb myself [laughs].

EMMA-听听听听听听听听听听 Well, what do you do instead?

BRYONY-听听听听听听 Well, I just sit with the pain. That is the most dreary answer I鈥檝e ever given any question.

EMMA-听听听听听听听听听听 Well, what about running? Running does that help?

BRYONY-听听听听听听 Well, running, this is the thing, I don鈥檛 think I鈥檓 addicted to running because it鈥檚 a different feeling; it鈥檚 a joyous feeling. And also I don鈥檛 compulsively need to do it every day, sadly [laughter]. What I love doing is showing people that exercise is so wonderful for the way it makes you feel, not the way it makes you look.

EMMA-听听听听听听听听听听 Yeah.

BRYONY-听听听听听听 And it鈥檚 been so transformative for my mental health. I set up this group called Mental Health Mates eight years ago, which is walking groups for people with mental health issues where you can get together in your local area and walk and talk without fear of judgement. Because for me that getting up and out, just doing that is the hardest thing some days.

EMMA-听听听听听听听听听听 And you鈥檙e raising money for Mental Health Mates is by running the London marathon, the Brighton marathon and鈥�

BRYONY-听听听听听听 And the distance in between.

EMMA-听听听听听听听听听听 鈥�the distance in between.

BRYONY-听听听听听听 Yeah.

EMMA-听听听听听听听听听听 I mean, that鈥檚 a lot.

BRYONY-听听听听听听 It is, [laughs] that鈥檚 why I鈥檓 doing it. So, yeah, so I鈥檓 going to do the Brighton marathon on April 7th, and then over two weeks I鈥檓 going to run from Brighton to London, and I鈥檓 hoping people will join me because they鈥檒l be smaller runs, not marathons. I wouldn鈥檛 expect anyone to join me on a marathon. And when I get to London I鈥檓 going to do the London marathon. I want to show people what鈥檚 possible.

EMMA-听听听听听听听听听听 I mean, I love an out in the cold dip and I could talk about that all day, but鈥�

BRYONY-听听听听听听 Oh, you live in Fife so that鈥檚 cold.

EMMA-听听听听听听听听听听 That鈥檚 cold!

BRYONY-听听听听听听 That is cold.

EMMA-听听听听听听听听听听 I鈥檓 probably a fair weather though. But definitely, I鈥檓 terrible with exercise, but I can understand how that helps the mental health for sure. But I do have one self-indulging question: people who have fluctuating illnesses, mental or physical, always tell me how when it all falls by the wayside, when they have to focus on getting better and they can鈥檛 do their relationships, they can鈥檛 do their work, they can鈥檛 do their hobbies, it鈥檚 so hard to just start again and keep picking up from nearly zero or a little bit further on.

BRYONY-听听听听听听 Yeah.

EMMA-听听听听听听听听听听 Have you any tips for people in that position?

BRYONY-听听听听听听 Like, my heart goes out to you, I鈥檝e been there. You know, people always say this is really hard, this is really hard. And I have that as well, oh, I鈥檓 having to do this again. And what I try to remind myself at moments like that is it鈥檚 hard, but it鈥檚 not as hard as the alternative, which is not trying to recover, being in active illness 鈥� that鈥檚 hard, you know.

EMMA-听听听听听听听听听听 And how do you know when to ask for the help?

BRYONY-听听听听听听 I wish I had that magic answer. People with mental illness do feel shame because that is one of the biggest symptoms of mental illness. It鈥檚 not asking for help. These are things that we aren鈥檛 able to do, so it鈥檚 being able to see that we are suffering from an illness and it鈥檚 not a moral failing.

EMMA-听听听听听听听听听听 So, you deserve the help, being able to see that you deserve the help?

BRYONY-听听听听听听 Yes. And being able to step aside and go this isn鈥檛 me, this is my brain misfiring. And all organs misfire. We expect that, right?

EMMA-听听听听听听听听听听 Yeah.

BRYONY-听听听听听听 But for some reason we really, like, judge for it is our brain. But it鈥檚 massively complicated.

EMMA-听听听听听听听听听听 Bryony Gordon, good luck with the marathons and the runs in between.

BRYONY-听听听听听听 Thank you so much for having me.

EMMA-听听听听听听听听听听 Oh, thank you for coming on.

MUSIC-听听听听听听听听听听

EMMA-听听听听听听听听听听 A 麻豆社 documentary out this week introduces us to seven year-olds Marieme and Ndeye. Originally from Senegal the girls who are conjoined twins moved to Wales as toddlers after it was decided not to separate them. They鈥檙e the only living conjoined twins in the UK. Their dad, Ibrahima, is with me. Hi, Ibrahima.

IBRAHIMA-听听听 Hi.

EMMA-听听听听听听听听听听 And journalist Lucy Owen has followed the girls since they came to Cardiff. And you鈥檙e there with us as well, aren鈥檛 you, Lucy?

LUCY-听听听听听听听听听听听听 I am. Thanks very much for having us.

EMMA-听听听听听听听听听听 It鈥檚 absolutely such a fascinating story. I鈥檝e been following the girls since they came to Cardiff. But before we get into the story let鈥檚 hear a clip of the girls getting some new clothes made, because obviously they have unique body shapes and it鈥檚 hard to get stuff to fit them.

[Clip]

FEMALE-听听听听听听听 What鈥檚 your favourite things? What do we need to hope, fingers crossed, that we got for you?

NDEYE-听听听听听听听听听 Unicorn?

FEMALE-听听听听听听听 A unicorn?

NDEYE-听听听听听听听听听 Yes.

FEMALE-听听听听听听听 What else? Favourite colours?

NDEYE-听听听听听听听听听 Cat.

FEMALE-听听听听听听听 A cat.

NDEYE-听听听听听听听听听 I want pink.

FEMALE-听听听听听听听 Pink, okay.

MARIEME-听听听听 Me, like, red.

FEMALE-听听听听听听听 Pinks, red, cats, unicorns. Fingers crossed, let鈥檚 see what we鈥檝e got. [Guitar music] Ready? Yeah? There you go, you go and have a look.

NDEYE-听听听听听听听听听 Wow.

FEMALE-听听听听听听听 Lots of bright colours.

NDEYE-听听听听听听听听听 And shoes and sunglasses.

FEMALE-听听听听听听听 Glasses and hats.

NDEYE-听听听听听听听听听 Wow. I would like this one and鈥�

FEMALE-听听听听听听听 And this blue one?

NDEYE-听听听听听听听听听 Yeah.

FEMALE-听听听听听听听 So, do we want same or do we want different?

NDEYE-听听听听听听听听听 Different.

[End of clip]

EMMA-听听听听听听听听听听 That鈥檚 such a cute clip, Ibrahima, you must be so proud of your daughters.

IBRAHIMA-听听听 Very, very proud, very proud.

EMMA-听听听听听听听听听听 What鈥檚 their personalities like? Marieme, what鈥檚 she like?

IBRAHIMA-听听听 Marieme is a very introverted personality and her own way.

EMMA-听听听听听听听听听听 And what about Ndeye?

IBRAHIMA-听听听 Oh, Ndeye, she鈥檚 very extroverted, very extra one.

EMMA-听听听听听听听听听听 So, does she do a lot of the talking for Marieme?

IBRAHIMA-听听听 She鈥檚 the centre of everything. She鈥檚 speaking on behalf of Marieme and making sure that her views are very well heard.

EMMA-听听听听听听听听听听 So, it must be tricky for them, like, personality wise and identity wise to be so close together all the time?

IBRAHIMA-听听听 It鈥檚 all about adaptations. With time they understand each other, how to communicate, how to make sure that they鈥檙e doing things together, despite their condition.

EMMA-听听听听听听听听听听 Can you tell me, Ibrahima, for people who haven鈥檛 seen Marieme and Ndeye, how physically are they joined together?

IBRAHIMA-听听听 They鈥檙e sharing the whole body and inside. They have two pairs of lungs and separate hearts and two pairs of kidneys, which means four. Two of the kidneys are separated and the other two are fused. They鈥檙e sharing all the private side of their body.

LUCY-听听听听听听听听听听听听 And they have one pair of legs, don鈥檛 they, between them.

IBRAHIMA-听听听 Yes.

EMMA-听听听听听听听听听听 And what about their arms?

IBRAHIMA-听听听 Their arms, Ndeye is left-handed, Marieme is right-handed, and in the middle of them they have a conjoined arm.

EMMA-听听听听听听听听听听 Right. And does the conjoined arm do anything?

IBRAHIMA-听听听 Yes, they use it, they share it. Sometimes arguing how to share it.

EMMA-听听听听听听听听听听 Oh!

IBRAHIMA-听听听 [laughs] yes, when somebody wants to do something and the other wants to do a different thing. But most of the time it is Ndeye who is using it.

EMMA-听听听听听听听听听听 Why is Ndeye using it most of the time? Does she have more control of it or is it just a personality thing?

IBRAHIMA-听听听 It鈥檚 a personality thing. Ndeye is a very dominant person [laughter], so she鈥檚 more active then Marieme too.

EMMA-听听听听听听听听听听 So, they both can control it. What happens if they both try to use the arm at the same time?

IBRAHIMA-听听听 It鈥檚 more over the hand. So, when someone wants to hold with the two arms she would bend it forward to use it, so the other one will wait for one to finish. And if they have anything to do together they could help each other to do it. They鈥檙e working as a team in everything.

EMMA-听听听听听听听听听听 So, they kind of have separate arm muscles but the one hand that they can use, is that it?

IBRAHIMA-听听听 Yes.

EMMA-听听听听听听听听听听 Okay, amazing. What鈥檚 day-to-day life for them like?

IBRAHIMA-听听听 Like any other kids, I鈥檓 trying my best for them to have a normal life. So, school time is to give them a shower in the morning; a good breakfast; to have a little bit of a chat; to organise things, to pack their things and their lunchboxes and everything; to drop them to school where they are developing so much in this environment.

EMMA-听听听听听听听听听听 Yeah, because you鈥檙e at the school at the moment, aren鈥檛 you? And the school features highly in the documentary.

IBRAHIMA-听听听 Yes, it was very important for me in the documentary to show how this school are doing amazing things with the girls, despite the uniqueness of their condition.

EMMA-听听听听听听听听听听 And are they in class at the moment?

IBRAHIMA-听听听 They鈥檙e in class at the moment yeah. New day crew [laughs].

EMMA-听听听听听听听听听听 Ibrahima let鈥檚 back up a bit. What was life like for you and your family before the girls were born?

IBRAHIMA-听听听 Very normal life. I had my professional career. My other kids going to school, and the elderly one was preparing his master鈥檚 in digital engineering.

EMMA-听听听听听听听听听听 So, that was in Senegal, and that鈥檚 where the girls were born, isn鈥檛 it?

IBRAHIMA-听听听 Yeah, in Dakar, Senegal, the Senegalese capital, yeah.

EMMA-听听听听听听听听听听 So, what happened when the girls were born? You thought you were having one baby, right?

IBRAHIMA-听听听 Yeah, we were expecting one girl.

EMMA-听听听听听听听听听听 And two came instead.

IBRAHIMA-听听听 Two came instead when the caesarean was conducted. Doctors were a little bit sceptical and concerned about the size of the stomach, and then they didn鈥檛 want to take any risks so they went through the caesarean, and this is where we found out.

EMMA-听听听听听听听听听听 And how did everyone react? And how did everybody move forward from there?

IBRAHIMA-听听听 Surprise, shocked. It鈥檚 something that you always think is happening somewhere else and to someone else, not to you.

EMMA-听听听听听听听听听听 And did you look at separating Marieme and Ndeye?

IBRAHIMA-听听听 Yeah. The first option on the table is to try to separate, like any other conjoined twins. You have access to the medical expertise to do it. This was the first option to try to find a solution; not in Senegal because the expertise wasn鈥檛 there. From my office I tried everywhere in the world, in the US, in other European countries like in France. We started in France and then finally we found a call from Great Ormond Street Hospital.

EMMA-听听听听听听听听听听 So, you went there and did they think that they could do it?

IBRAHIMA-听听听 Yeah, from first sight, before conducting all the scans. They鈥檇 separated similar cases. Well, all conjoined twins are very different; they can look very similar from outside but different inside. The consultant was very enthusiastic also doing it, but prior they should do all the checks to make sure that they are taking the right decision.

EMMA-听听听听听听听听听听 Right. And then what was the decision? I mean, obviously they鈥檙e not separated, but was it going to be an option?

IBRAHIMA-听听听 No. Scans revealed that Marieme was going through a heart condition, this is singular ventricular, which was making her very likely not to survive if there is a massive operation. Because they told me that this operation could take at least 12 to 18 hours, with a full team of surgeons. And they didn鈥檛 think that the anaesthetic would be good for Marieme. So, our first decision was this is not ethical knowing that we don鈥檛 have chance of survival here.

EMMA-听听听听听听听听听听 Okay. So, how did you end up in Cardiff?

IBRAHIMA-听听听 Oh, here when my decision was to try to stay in the UK, just to safeguard the girls鈥� lives, when you claim asylum you鈥檙e sent anywhere by the Home Office. This is how we ended up here in Cardiff; which again, was quite a big surprise for me. I didn鈥檛 hear about Cardiff, didn鈥檛 know nothing about Cardiff [laughs].

EMMA-听听听听听听听听听听 You鈥檇 never heard of Cardiff before?

IBRAHIMA-听听听 No. I remember when they sent a message to say that you鈥檙e going to Cardiff, I went and googled just to see where Cardiff was [laughter].

EMMA-听听听听听听听听听听 And it鈥檚 just you and Marieme and Ndeye, the rest of your family aren鈥檛 in Cardiff?

IBRAHIMA-听听听 No, they鈥檙e in Senegal.

EMMA-听听听听听听听听听听 That must be so hard?

IBRAHIMA-听听听 Yeah, but again this was the right thing to do to give them the best chance of achieving what they鈥檙e achieving now.

EMMA-听听听听听听听听听听 And do they know much about their Senegalese identity? Do they know where they come from?

IBRAHIMA-听听听 Yes, of course they鈥檙e having regular FaceTime calls with the family back home. So, learning to speak Senegalese language. They鈥檙e more talented in English and Welsh than Senegalese for the moment [laughs].

EMMA-听听听听听听听听听听 Oh, they know more Welsh. And they have fabulous Welsh accents as well, don鈥檛 they?

IBRAHIMA-听听听 Very, very, very fabulous. Correcting me every day when I鈥檓 speaking English, they鈥檙e saying, 鈥淒ad, this is not the proper way of pronouncing it鈥�. I say, 鈥淓xcuse my French accent鈥�.

EMMA-听听听听听听听听听听 [Laughter] Lucy, what鈥檚 it been like sharing this family鈥檚 life over the last while?

LUCY-听听听听听听听听听听听听 Oh my goodness, it鈥檚 been such a privilege to know this family. We feel so lucky to have been trusted to tell their story and to be able to have a glimpse into their lives. And the motivation for Ibrahima behind making this film was always to show the courage of his girls who have overcome such massive obstacles.

EMMA-听听听听听听听听听听 Ibrahima how are the girls鈥� health? I know they鈥檙e wheelchair users and they鈥檝e got a stoma. How is their health generally at the moment?

IBRAHIMA-听听听 Oh, nothing has changed in between. All the prognosis is still here. Since one year and a half now they鈥檙e enjoying less admissions to hospitals. There is a very clear and distinct plan with the medical staff, so whenever they have an infection, when I call the ambulance, for example, they have all the information about the girls.

EMMA-听听听听听听听听听听 What are your hopes for their future?

IBRAHIMA-听听听 Building the future with present. So, you can imagine, with their underlying condition if anything happened that could be a massive blow to me.

EMMA-听听听听听听听听听听 Hmm.

IBRAHIMA-听听听 So, I鈥檓 trying to navigate between these two zones of making plans, but at the same time being realistic of their current situation, and to navigate cleverly in between the two and just enjoy the present.

EMMA-听听听听听听听听听听 Ibrahima and Lucy, thank you so much for joining me.

IBRAHIMA-听听听 You鈥檙e welcome. Thank you.

LUCY-听听听听听听听听听听听听 Thank you so much.

IBRAHIMA-听听听 Thank you for having me.

EMMA-听听听听听听听听听听 Absolutely incredible stuff there from Ibrahima. What a guy! Inseparable Sisters is on 麻豆社 One Wales and 麻豆社 One on Wednesday 21st February, and afterwards on 麻豆社 iPlayer. If you have any thoughts on any of our stories please get in touch. You can email us accessall@bbc.co.uk. And we鈥檙e on X, formerly known as Twitter @麻豆社AccessAll. See you next time. Bye.

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