Bryony Gordon and the conjoined twin ‘warriors’

 

20th February 2024

bbc.co.uk/accessall

Access All – episode 92

Presented by Emma Tracey

 

 

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

EMMA-           So, it’s all over the news as to who won the BAFTAs, but I have absolutely no idea who didn’t win, because I’m blind.

MALE-             The nominees are… [BAFTAs music]:

MALE-             This time the chain reaction doesn’t stop. [Cheering and applause].

EMMA-           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’t access it. I don’t 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’s not fair! So, I’m on a one-woman campaign to make the BAFTAs ceremony more accessible. I’m going to get my friends involved. I’m going to get Michael J Fox who announced who won Best Film, my disabled friend Michael. My other disabled friend who I’ve actually met, Ella Glendening from Is There Anybody Out There, which was nominated for a BAFTA. I’m going to get her involved; and I’m also going to get my Irish neighbours, Andrew Scott and Paul Mescal from All of Us Strangers. And obviously Cillian Murphy from Oppheimer, I’m sure he’ll get involved as well. I’m sure he’ll take one for the team and campaign on my behalf to make the BAFTAs more accessible. Thank you very much.

MALE-             And the BAFTA goes to:

MUSIC-           Theme music.

EMMA-           Hello, I’m Emma Tracey and this is Access All. Now, I’m blind, but we don’t just talk about that because Access All is the BBC’s disability and mental health. We’ve got unbelievably great stories, we’ve got amazing insights, we’ve got fabulous guests. I mean, I’m telling you you’ll know we’ve got fabulous guests when you hear what’s 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’m 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’m really looking forward to you hearing that.

                         Listen, if you like what you hear you can subscribe to us on BBC Sounds. And if you’ve just come across us on 5 Live, hello to you as well. Pop onto Sounds, find Access All, hit the subscribe button and you’ll never miss an episode. Right, on with the show.

                         We talk about mental health a lot on this podcast, but we don’t often talk about how people’s 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’m so delighted to welcome Bryony Gordon. Hi Bryony.

BRYONY-       Hi Emma, thank you for having me.

EMMA-           Ah, thank you for coming along, seriously. Of course I’m 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-       I’m really good. I’m all the better for being here with you. In, like, book promo mode, it’s a bit overwhelming, but I’m sort of trying to ground myself, if that makes sense.

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

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

EMMA-           Thanks.

BRYONY-       I also – I don’t know about you – but what I write about is mental illness and my history of mental illness, and so it’s 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-           Is it ever triggering to keep talking about it?

BRYONY-       it’s weird, I think you kind of sometimes find yourself disassociating from it. And I don’t know how healthy that is.

EMMA-           So, you’ve 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-       I don’t, I think… 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’s 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-           So, it puts him in his place?

BRYONY-       Yeah, which is hopefully right at the back of my brain. I don’t 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-           It’s interesting, your new book Mad Woman kind of reflects how you’ve started to change your thinking around mental health. Tell me about your book?

BRYONY-       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’ve learnt so much about myself. I’ve got sober. We like to have this neat narrative, don’t 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’t 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’d sort of got it licked, you know. Like New Years Eve 2019 I was like, I’m sorted, I’ve triumphed. And then the universe was like, nah-nah, that’s 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’re a freak and by telling you that you’re alone, and by telling you that no one is going to understand what you’re going through. And so depression is very vicious and you often tell yourself you don’t have depression, you’re 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’s almost always really appropriate. It was appropriate that people were depressed because we were in lockdowns, we weren’t 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’re 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’t right in your life.

EMMA-           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’t been able to work. How does your approach affect how you go forward with it?

BRYONY-       So, I think that’s a really important thing. Obviously when I say that I don’t want to undermine mental illness. I know that it’s 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’m sure anyone who has been hospitalised with a mental illness will understand that: you don’t just get better and then that’s that. They’re chronic health conditions basically. And for a lot of us they are really baked in because we didn’t get the help we needed when we should have done.

EMMA-           Partly because we’re female, [laughs] because we’re women?

BRYONY-       Yes.

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

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

EMMA-           Yeah.

BRYONY-       We absolutely know this.

EMMA-           I’m like, I’ve got this, I’ve got a bit of anxiety. Oh, it’s because you can’t see, of course you’re going to be anxious [laughs].

BRYONY-       Yeah. So, the mad woman of the title, it’s a bit tongue in cheek, Emma, it’s a bit like I am mad, I’m bloody angry. So, the subtitle of the book is How to Survive a World That Wants You to Think You’re the Problem, okay. And what I’m 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’s probably a good reason for that, yeah. Can we stop with this way that society gaslights people and sort of treats them like they’re freaks? I’m trying to say, especially to women, you’re not the problem, you’re the solution, you know. Women we live in a society that has not been set up for us. And you’ll know this: you on many levels live in a society that isn’t set up for you.

EMMA-           [Wry laugh]

BRYONY-       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’s hard.

EMMA-           Yeah, and your brain’s doing the best it can.

BRYONY-       Yeah.

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

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

EMMA-           But it’s hard for people to not feel like they’re 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…

BRYONY-       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’s like try losing weight or doing some gentle exercise. They always say gentle as if I couldn’t handle anything more than that. And of course the irony being I do quite hardcore exercise [laughs] on a daily basis; I’m like, running, cross fitting.

EMMA-           Yeah, but they look at you and…

BRYONY-       And go, no, you couldn’t do that. So, I always was dismissed for these palpitations, they were like, it’s just stress, it’s just hormones. And I’m like, where is the just about hormones, they’re 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’d done at the weekend, and he, like, mansplained the triathlon to me. He was like, “A triathlon is…” And I was, like, “I know what a triathlon is”. And he was like, “It was really hard, I did it in Spain so it was really hot too”. And I let him go on and I let him have his, you know, plaudits and go, “Oh well done for doing a triathlon”. And then I said, “I’ve done a triathlon”. And he went, “What?” I said, yeah, “I did a triathlon a few years ago” [laughs]. And then he said, “Oh, where was it? Was it somewhere as hot as Spain?” and I was like, “Yes, it was in Sardinia”. And he went, “What?” and I went, “I’ve done two marathons”. And genuinely, Emma, he looked to me and he said, “How extraordinary!” [laughter]

EMMA-           And then he couldn’t get you out of there fast enough!

BRYONY-       Yeah. And I love defying people’s expectations.

EMMA-           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-       So, binge eating disorder is the most common eating disorder in the western world; it’s 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’s 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’s 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 – and we’re not talking about, you know, a packet of biscuits or a bar of chocolate – 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’d been sober for, like, two and a half years at that point, I couldn’t 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’d 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-           And how do you treat that? Your body can physically survive without alcohol, even though I’m sure it doesn’t feel like that at the time, but it can’t survive without food. So, how did the treatments differ then?

BRYONY-       Yeah, it’s really interesting. Eating disorder experts say it’s like having to take a tiger out for a walk three times a day. It’s difficult. And obviously it’s 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’m compulsively eating, you’ll probably get put on a diet, right. And that’s 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’ve got binge eating disorder, I’m so ashamed because I put on weight. And I want to say to them it’s 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’re probably not going to get better from it.

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

BRYONY-       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-           Yeah.

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

EMMA-           You don’t have the food addiction, you don’t have…you’re a recovering alcoholic. What do you do to numb yourself now, Bryony?

BRYONY-       I don’t numb myself [laughs].

EMMA-           Well, what do you do instead?

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

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

BRYONY-       Well, running, this is the thing, I don’t think I’m addicted to running because it’s a different feeling; it’s a joyous feeling. And also I don’t 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-           Yeah.

BRYONY-       And it’s 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-           And you’re raising money for Mental Health Mates is by running the London marathon, the Brighton marathon and…

BRYONY-       And the distance in between.

EMMA-           …the distance in between.

BRYONY-       Yeah.

EMMA-           I mean, that’s a lot.

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

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

BRYONY-       Oh, you live in Fife so that’s cold.

EMMA-           That’s cold!

BRYONY-       That is cold.

EMMA-           I’m probably a fair weather though. But definitely, I’m 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’t do their relationships, they can’t do their work, they can’t do their hobbies, it’s so hard to just start again and keep picking up from nearly zero or a little bit further on.

BRYONY-       Yeah.

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

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

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

BRYONY-       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’s not asking for help. These are things that we aren’t able to do, so it’s being able to see that we are suffering from an illness and it’s not a moral failing.

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

BRYONY-       Yes. And being able to step aside and go this isn’t me, this is my brain misfiring. And all organs misfire. We expect that, right?

EMMA-           Yeah.

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

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

BRYONY-       Thank you so much for having me.

EMMA-           Oh, thank you for coming on.

MUSIC-          

EMMA-           A BBC 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’re the only living conjoined twins in the UK. Their dad, Ibrahima, is with me. Hi, Ibrahima.

IBRAHIMA-    Hi.

EMMA-           And journalist Lucy Owen has followed the girls since they came to Cardiff. And you’re there with us as well, aren’t you, Lucy?

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

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

[Clip]

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

NDEYE-          Unicorn?

FEMALE-        A unicorn?

NDEYE-          Yes.

FEMALE-        What else? Favourite colours?

NDEYE-          Cat.

FEMALE-        A cat.

NDEYE-          I want pink.

FEMALE-        Pink, okay.

MARIEME-     Me, like, red.

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

NDEYE-          Wow.

FEMALE-        Lots of bright colours.

NDEYE-          And shoes and sunglasses.

FEMALE-        Glasses and hats.

NDEYE-          Wow. I would like this one and…

FEMALE-        And this blue one?

NDEYE-          Yeah.

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

NDEYE-          Different.

[End of clip]

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

IBRAHIMA-    Very, very proud, very proud.

EMMA-           What’s their personalities like? Marieme, what’s she like?

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

EMMA-           And what about Ndeye?

IBRAHIMA-    Oh, Ndeye, she’s very extroverted, very extra one.

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

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

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

IBRAHIMA-    It’s all about adaptations. With time they understand each other, how to communicate, how to make sure that they’re doing things together, despite their condition.

EMMA-           Can you tell me, Ibrahima, for people who haven’t seen Marieme and Ndeye, how physically are they joined together?

IBRAHIMA-    They’re 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’re sharing all the private side of their body.

LUCY-             And they have one pair of legs, don’t they, between them.

IBRAHIMA-    Yes.

EMMA-           And what about their arms?

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

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

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

EMMA-           Oh!

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

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

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

IBRAHIMA-    It’s 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’re working as a team in everything.

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

IBRAHIMA-    Yes.

EMMA-           Okay, amazing. What’s day-to-day life for them like?

IBRAHIMA-    Like any other kids, I’m 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-           Yeah, because you’re at the school at the moment, aren’t you? And the school features highly in the documentary.

IBRAHIMA-    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-           And are they in class at the moment?

IBRAHIMA-    They’re in class at the moment yeah. New day crew [laughs].

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

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

EMMA-           So, that was in Senegal, and that’s where the girls were born, isn’t it?

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

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

IBRAHIMA-    Yeah, we were expecting one girl.

EMMA-           And two came instead.

IBRAHIMA-    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’t want to take any risks so they went through the caesarean, and this is where we found out.

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

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

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

IBRAHIMA-    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’t 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-           So, you went there and did they think that they could do it?

IBRAHIMA-    Yeah, from first sight, before conducting all the scans. They’d 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-           Right. And then what was the decision? I mean, obviously they’re not separated, but was it going to be an option?

IBRAHIMA-    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’t think that the anaesthetic would be good for Marieme. So, our first decision was this is not ethical knowing that we don’t have chance of survival here.

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

IBRAHIMA-    Oh, here when my decision was to try to stay in the UK, just to safeguard the girls’ lives, when you claim asylum you’re 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’t hear about Cardiff, didn’t know nothing about Cardiff [laughs].

EMMA-           You’d never heard of Cardiff before?

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

EMMA-           And it’s just you and Marieme and Ndeye, the rest of your family aren’t in Cardiff?

IBRAHIMA-    No, they’re in Senegal.

EMMA-           That must be so hard?

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

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

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

EMMA-           Oh, they know more Welsh. And they have fabulous Welsh accents as well, don’t they?

IBRAHIMA-    Very, very, very fabulous. Correcting me every day when I’m speaking English, they’re saying, “Dad, this is not the proper way of pronouncing it”. I say, “Excuse my French accent”.

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

LUCY-             Oh my goodness, it’s 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-           Ibrahima how are the girls’ health? I know they’re wheelchair users and they’ve got a stoma. How is their health generally at the moment?

IBRAHIMA-    Oh, nothing has changed in between. All the prognosis is still here. Since one year and a half now they’re 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-           What are your hopes for their future?

IBRAHIMA-    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-           Hmm.

IBRAHIMA-    So, I’m 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-           Ibrahima and Lucy, thank you so much for joining me.

IBRAHIMA-    You’re welcome. Thank you.

LUCY-             Thank you so much.

IBRAHIMA-    Thank you for having me.

EMMA-           Absolutely incredible stuff there from Ibrahima. What a guy! Inseparable Sisters is on BBC One Wales and BBC One on Wednesday 21st February, and afterwards on BBC 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’re on X, formerly known as Twitter @BBCAccessAll. See you next time. Bye.

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