Welcome to epilepsycast, the podcast about all things epilepsy, from Epilepsy Action.
Hey everyone, welcome to a special bonus edition of epilepsycast. We're still not quite ready for Series Two, but we've got a really good one for you that we can't wait to share, and we couldn't hold it back any longer. Now Hattie is still off on maternity leave at the moment, so I'm going to be joined by my colleague Claudia. Now, Claudia is a PR and media officer here at Epilepsy Action and she was contacted a couple of months ago by Ariish. Now Ariish is one of you fine epilepsycast listeners. She's currently working as a model and she was inspired by some of the podcasts to tell her own story. And it is a really fascinating one - trust me. Now, Claudia, hello! Could you tell us a little bit more about Ariish and kind of how the chat you had with her came about?
Sure, well, it was a few months ago. She just dropped an email to us saying how she loved the podcast and she just wanted to raise more awareness. She'd obviously found a new community, which was our podcast. And she just thought there was some scope to chat a bit more about her own background, she wanted to kind of explore how epilepsy impacts people from different ethnicities and different spiritual beliefs and all kinds of false intel. She was quite mindful to sort of talk about... I think her background had, you know, been really challenging and she found a safe space where she could reach out to our listeners.
That's really cool to find out that the podcast has had a positive impact on someone and we do get quite a few emails that, you know, people say that they do enjoy the podcast, and it's ace to get her on to talk about her history and her story. And I think you did a really good job, Claudia.
Ah thanks! We just had a chat, really, but I recorded it just to record it so I could jot down some notes and it then ended up actually being quite a cool chat that we said 'oh this would work for epilepsycast!'.
Yes! I will pre-warn as well and just say Ariish does go into a few heavy topics, doesn't she Claudia? And she does use a few instances of strong language, but I'd say they're probably merited with what she has gone through....
Yeah, exactly. She's been on a huge journey - I hate that word - but it does encapsulate it quite a bit. She's only in her mid-20s. She's on this amazing kind of career path as a model but she's overcome so much in her life already. She's really brave and inspiring. She's been through all kinds of trauma as a young girl and to listen to her and how she is so positive, that shines through so much. I was really inspired. So I hope you guys really like it.
Absolutely. And don't forget, if you ever want to be featured on the podcast, like Ariish or you want to get in touch with us, you can always email us on podcast@epilepsy.org.uk, but yeah, without further ado, let's go into that interview now.
So where do you live, do you live in South London?
I'm living actually in East London, in Ilford.
Ah right - have you been there long?
I've actually just moved here at the beginning of April.
Oh, wow.
Before I was living in South London for about, like, eight months. I was in Brixton. Really loved that area. But yes, I've been trying to find a community where I can feel like, where people can relate to me, you know, where I can find more information and understand my condition and the way our brains and our bodies just work, you know? Without feeling, when I'm discussing with somebody who completely does not understand, and then they're looking at me, like, I'm like crazy, you know? So, I found you guys on like, Instagram, and then I was just reading about you guys and I was like, wow, these people are incredible and then I found the podcast!
Oh cool!
Because I was looking for a podcast about epilepsy and a place where people just had like a comfort zone, like a safe zone and just be able to just discuss and people get more information. And then I was like this, like everything that they were talking on there and all of the guests that they had, I was like, this is incredible, like...
Oh, I'm really glad, they'll be so pleased because it was a new kind of experiment for us. We've never done one before. So part of what I thought would be lovely to talk to you about was your new, I guess it's relatively new, your career in modelling and how that all came about. It's all been quite quick, has it? Yeah, I guess it's... how's it been combining it, if that's the right word, combining it with your condition and have you been quite healthy and been ok workwise with your epilepsy?
Yes, actually, honestly, after coming into modelling and seeing how much pressure and how much stress it puts onto the body and just onto your mind, I was like, I need to make sure that, like, I’m 100% good. Like, I need to take care of my body, take care of my mental health because this industry is not for everybody. This industry does not give you, you know, like a pamphlet, like, here you go, this is what you have to do, this is how you're supposed to behave.
Yeah, and you've got to learn really quick and be quite robust, haven't you?
Yeah, and just always standing in front of the camera too like, the camera just drains and you're always on your foot and you're just wearing heels, switching outfits, you know, different make-up changes. You know, you're travelling abroad, you're, you're always mobile, like, you're always everywhere. You're not....
And there's not a lot of routine?
Yeah, exactly. So coming into this industry, and then just like, seeing how things were working. And at first, I was quite frightened, because I was like, what if... I've never had an episode while I was during, like, the day like when I'm out and about, but I was always in the back of my head. like, what if maybe the flashing light may trigger this episode, you know?
You've never had... you're not triggered by lights?
No, I'm not.
That's good.
But then, you know, the condition always can build up.
Yeah, they can change, can't they, the triggers?
Yeah, so it was just in the back of my head. I was I was always fighting, like, how does something happen? You know, because my triggers are mostly to do with with muscles. Okay, so I have, my epilepsy is the myoclonic seizure - so with the jerking of the muscles of the one side of your body.
And did that make you fall and stuff like that? Or is it more like a paralysis, sort of a bit of a paralysis or a jerk? Does it make you fall down?
No, it doesn't make me fall. It doesn't actually make me fall because most... I've never had them when I was standing up. I've always been in bed. I've always been in home like, um, you know, so it always happens, like, early in the mornings, as like, as soon as I wake up, it will happen. Or while I'm sleeping.
Yeah.
But it is like, like this stiffness that comes in and it's like this aura sensation. So I know, once it's happening. I'm conscious for the first bit of it. And then after that, I'm just like, as soon as it's done, I wake back up, and I'm just drained.
Oh I'm sure. For a lot of people, like, I think some people think 'oh, it's a bit of a less seizure if you're conscious, that must be fine'. But I think it must be pretty scary when you can actually see what's going on, you know, it's tough.
And then especially because when you're trying to fight it back, because sometimes I'm able to control it, like hold back the jerks and then in my body, but then, you know, just letting all of that energy just like out and like it just drains you even more because when you wake up, you're even more exhausted. You're just like, you can't even move so you just go right back to sleep again, so can come back out of it. And then it's just all these extra things that just keep building up.
I'm sure, so does tiredness have a factor in it as well?
When I get lack of sleep, um, sleep.... yeah lack of sleep triggers it, just a lot, a lot of stress that I would put on my body. Like if I work my body too hard, especially because I work out often now. So when I put too much of that onto my body and just bad eating habits could could trigger it. You know, sometimes alcohol triggers so it's just....
I mean, those triggers, they're hard to keep on top of, I'm sure, but they seem to be really significant trigers for a lot of people.
Because especially you know, when you're also young, you know, you want to be with your peers, you want to do what your peers do, but you just have to be more cautious and alert of your wellbeing because you understand that you are different from the rest of the world sometimes.
You were diagnosed when you're about 14, is that right? It's a really...I seem to be reading so much at the moment, women certainly being diagnosed at that age, it's such a pivotal age. , I think, yeah, that hormones sometimes have something to do with it being 14, kind of, I don't know. But it's such a difficult age because you want to do everything that your friends are doing!
Yeah. But the thing is, like, I got my first episode when I was 12 and then didn't have any more until I was 14. But as soon as I, like, you know, when they were telling me I'm epileptic, and just like, my head, like, everything just hit me, life really hit me. And I went to a really bad path.
So tough. Was that because you found it really hard to accept?
Yeah, I found it really hard to accept it. As soon as I found, like, as soon as they told me and then as soon as I was taking it in, like, I just didn't want to accept the fact that I am an epileptic, you know? And I was like, no, like, this is not my life. This is not my story at all, like, this cannot be me, like this. And especially because there's so much bad, like, context towards it, and especially being a woman of colour. It just brought a lot of dysfunction into my family. Like, I was pushed away a lot from my siblings. And you know, from my mother. It was only my dad's brother, my uncle who really told me like, you are a special girl, like, you know, like, this is not your fault. There's something to do. It has to... like he always said it was to do with rituals back home.
Yeah.
So in the spiritual realm, like, it was always about my family, my parents just didn't do what was necessary, you know,
Is that because they were scared, and they didn't understand it?
Um, it was more of like, because my mom, as soon as my mom had twins, she was supposed to do a celebration for them. But my parents, they were divorced. They got...at that time they were separated. And they... my father just really hated my mother, honestly. You know, and he just didn't want to complete what was necessary for back home. And I guess he was just like, when your parents don't do what is right. All of that? Um, what's the right word...all of the family curses goes on to a child.
Yeah. And children absorb it, don't they? You can't help but absorb their negative problems or, you know, as a child, you just like, it's like a sponge, aren't you, you absorb it.
And he was like, I guess you were just the child that was chosen to have to deal with this because probably you are the strongest one out of all of your siblings, so. But I really fell into hanging out with older people doing drinking more frequently, partying, sleeping less. You know, and then just a lot of my traumatic...
Like a rebellion?
Yeah, I was really being rebellious. And I was basically literally screaming for help. Like, I was like, I don't understand, I don't know what I'm doing. Like, why is this happening to me? All my cousins, their parents are telling them don't go around Ariish, she's not, you know, she is not well, she's like, a demon child. Like, you know, the devil curser, this and that. So I was really pushed away from my family and I was okay, nobody wants me. Nobody wants me to be around. So I if I leave and if I die from this out in the streets, no one's gonna care. You know? And I honestly, I believe that was really that was my goal, to be honest to do everything that was... that can harm me as much as possible.
Self-destruct?
Yeah. So I wouldn't have to wake up from it again.
Oh, that's so hard. How did you pull yourself out with that? Slowly? Was that a slow process of acceptance?
I think after every episode, I just... every episode, I just kept falling back into the same routine again of going back to self-destruction mode. But I think as soon as I...once I had my child, that's where I was really like 'okay, I'm pregnant now'.
Yeah, it forces you to look after yourself.
I was like I'm pregnant now I can't do what I'm like, you know, to harm myself, because I don't want to give my child any sort of medical problems. This is not anything to do with her. This is not her fault. So I was very more cautious through my pregnancy and I didn't have one fit through my whole pregnancy.
Wow, that's great.
Yeah, because a lot of my episodes, to be honest, sometimes I would have them for like, I'll have like one, and I won't have them for like, up to six months, like a year. You know, but then I'll have really, really bad ones within those episodes, because I was drinking, you know, I was partying, and all these things. But after having my daughter, I started just starting to, like, try to find myself because I want to be a good mom. I didn't want to raise my child like the way my mother and my family raised me. So I was trying to come to a place where I was like 'okay, let me take care of myself'.
Yeah, it's a good motivator, isn't it? But you can't think of yourself, you're sort of thinking of somebody else. And trying to do the best for someone else, it kind of focuses the mind a bit, doesn't it?
Yes, exactly. So she was truly the person who made me change and do a whole 360 around because I'm like, 'I am not going to go into motherhood and she's gonna be like...my mom is terrible. Like she has this medical problem and she still doesn't want to take care of herself. And to even let alone like she has me and she's not even behaving like a parent'.
Yeah. How old were you when you had her? Were you late teens?
I had her when I was 20.
Okay, yeah. Wow, it's young. It's still young, isn't it?
It was still very young, yeah.
And you had some episodes when she was raised quite small?
Yeah. After giving birth, after raising her for about a year, within that year, I was having episodes like, every other month. It kept coming up very like, there's a lot of stress happening on me. You know, I wasn't getting much help, the father wasn't there.
Sleep deprivation?
Yeah, sleep deprivation, everything. So it just kept coming and coming. But especially when I had this one episode during the Christmas holiday. That was the one that really really terrified me the most, because that's the one I went into a coma for about a week, I was in a coma. And by then that was like my fourth coma that I've been in, you know? So from there, like, I had to make a decision either for the wellbeing of her, so she wasn't so she doesn't have to grow up at such a young age, or having to call 911 every time her mother has a fit or something else. It's like I had to make a decision and I made a decision to, um, to do an open adoption.
Yeah. How's that? What's an open adoption?
So an open adoption is basically where you are still in contact with the family. And so you can still be involved in the child's life, while they're raising her.
Oh, wow. And is that quite a common thing or is it not very common when people adopt, to do that?
Honestly, I think it's like, a 50-50 thing. it's the person's personal choice.
Yeah, that's great - are you in touch with her a lot?
Yeah, I'm very close with the family.
That's lovely.
We've built a really strong relationship where we talk on a regular basis and we video chat. And we're planning vacations and trips together, so...
Ah that's so cool, that's lovely! So how old is your daughter now?
She's four. Yeah.
And she's back in Canada. Is she in Canada?
She's back in Canada.
Ah, that's lovely you can...Well, it's so nice we can plan stuff as well, given the year that we've all had, but it's so good, you know, must be really desperate to see her.
I am. I'm like, I'm planning probably to go back in like August and take like a month off, go back in August, and just spend the time with them. And just do as much as I can possible. And just enjoy. Enjoy it. Because I really, really miss her every time just seeing her through that camera I'm just like...
Yeah,
I just want to, like, let me just hold you, let me just grab you.
Yeah.
But she's also a very intellectual little girl, too. So she's really asking a lot of questions about, you know... She understands the fact that I am her mother, she came from my, from my body. And that I gave her to someone that they wanted to be parents, and they are her parents. And she understands that, but she's asking even more like, in-depth questions. She just doesn't want that little, like, happy, happy story.
And it's good to start having these conversations when they ask isn't t? And not hide stuff and kids are really clever, aren't they? And they, they pick up so much. It's so good that you have this presence in her life like that.
Yeah. It's honestly amazing. Especially because she is with a Caucasian family, you know so she's not seeing somebody in her and her other sister is black also. But she's not seeing people of her complexion every day. So even that, in that whole dynamic, she's still like, she knows that she's black, and she knows that her parents are white, but but I think it's just something that's more... is soothing for me a bit because she can grow up to be very diverse and not look at complexion, but look at people from within and understand not to judge people because of their race. Because she's grown up in a very diverse community, you know?
Yeah. And obviously her relationship with you means she knows who she is and where she's from. And I think it's so important, isn't it? When you are from another racial background, You know, she's got you to ground her and know where she's from?
Yeah.
Otherwise, it must be quite, quite tough. Oh, that's brilliant. I'm glad you have such a, you know, a really good situation there. And you're able to see her soon. Do you find you sort of have to explain it a bit to some people? And do people get it when you talk about the adoption? Or is it kind of you don't go into it too much, or...?
People...people...I think what, honestly, what people do they feel like pity for me. I feel like that's what I get when I tell this. That's like a pity thing. But um, some people do get it. Some people don't.
Yeah, but it's, you know, it's your experience.
Yeah. So it's how comfortable they are and how open-minded they are with these types of situations, really. Because when I gave my daughter up for adoption, I did not tell my family for a whole year.
Wow.
No-one knew about it. Even before giving her up for adoption, I did seek help from my family. I asked like, can you guys help me? I need help. I went to the father. No-one wanted to extend that help. And listen, I come from a big family. I have like eight siblings? As you know both my parents both live in Canada. And I have multiple cousins and relatives. And then on her dad's side of the family, he has all these family members also. So it was like, just for no one to try to help with like, I was I was really hurt from it. Because you say your family is your village, you know?
Yeah. He must have felt so alone and so vulnerable. It was very tough?
Yeah. So then I had to make a decision. Because after that episode, after coming out of that coma, all I wanted to do was hold my child, but then after seeing that, while I was in the hospital for a whole week. Imagine if I didn't even get up who was going to take care? Like who was going to take care of her? Yeah, over her, you know? So all these thoughts, all these things just kept running through my through my head, like outside. I'm such a bad mother for like, you know, like, I was blaming myself for having epilepsy. I was like, I am the cause of this. Like, why does she have to suffer, you know?
No, it's so difficult and no-one can put that themselves really in your shoes unless they have exactly those circumstances. So you did what you felt you could. You had to do the best,didnt you?
Hey, just stepping away from the conversation between Claudia and Ariish for a second, we just wanted to give a trigger warning to our listeners that this is the point in the conversation where Ariish goes on to talk about some difficult and sensitive issues surrounding sexual abuse she experienced as she grew up, and the impact of the trauma on her seizures. It's just a heads-up because we realize it might be particularly upsetting for some listeners. We will include some sources of support in the show notes. Thank you.
Yeah, exactly. So and then plus I'm pretty sure, you know, that epileptics they get a lot of bad mental health issues from it. My mental state was not right. Like, because always hearing, I'm growing up my life like half of my teenage life. The people push me away, they're saying I'm like the devil's child. So I've always had like these bad..... I've always had like these negative thoughts in my head, these negative visions of myself, you know, so even waking up from an episode, I would be afraid to even sleep in the dark because while I was in my episode, I was dreaming and I was dreaming about like, evil things like you know, like tormenting things because as like a young child, too, I was raped by multiple men, and all these things came and then it was just like, literally walking around, like the valley of death. You know, I was like, I was just in darkness. So I was always in such a bad state after an episode and I didn't recover mentally for like, about a month. So even I was taking all these things into consideration, too.
I think I read it when you did that article in the Telegraph, did you say that sometimes your seizures might be triggered by memory and traumatic memories of trauma?
Yeah. So my neurologist, when I was seeing him, my neurologist in Canada, we were discussing about this and he brought it up, he was like, 'are you sure like maybe these new triggerments seem like it could be triggered by memory from your childhood? That when you're dreaming back into your past that because we realize when sometimes when you're in your episode, you tend to mumble something out? And then when you wake up, you like, protect yourself, you know, so then it was 'okay', I'm like, and I took that position, because every time I was like, I realized when I did dream, I was dreaming sometimes about what happened to me as a kid and or seeing my mom and my dad fighting or, you know, just things that were horrifying.
Like buried, things that were buried in you, I guess?
...that were just coming up.
Oh, God, I mean, the seizure's bad enough on its own, but you know, having that all sort of regurgitated as well must have been really difficult? Was it somehow like, did it bring them to the surface in a kind of weird way that made you process them a bit? I don't know, I'm not a therapist. I just, I'm amazed how you've got to where you are, and dealt with it somehow. You know, when you're so positive. I'm just wondering, yeah in some weird way, the memories coming out were kind of cathartic or something.
Like I don't come from the greatest family, like an abusive household. I come from a family where we don't embrace our emotions, we don't talk about about anything really. You know, so, I'm getting a bit (starts getting emotional)...
It's okay, you don't have to go there. It's absolutely fine. You know, it's just amazing how far you've come and these things never go away, I know that, but you know, it's brilliant how you've somehow processed a bit.
Well, I think it had to come out I think what it did, like my epilepsy I think it showed it showed me how to be open. I just say fuck everything, excuse my language, and just let it all out, like just let it be....
Well you have no control, do you? You've just got to...
Like, I wanted my family to hear what happened - what your brother-in-law did to me what your brother did to me. You know what my cousin, the man, the people that you trusted to come and take care of your children what they did to, to us, you know? And I needed my community to understand that like these things when you guys kept talking about, oh, that's only white people stuff only white people do this only, I'm like, 'no, this happens in every community, these type of things happening in every race'.
Denial is so bad for for the children affected, denying it is just so awful.
Yes. And then on top of blaming, you're the child like, it's your fault. You are the reason why it happened to you. This is your problem. And it's like, no, like, what, eight-year-old, what four-year-old wants to see their parents arguing, fighting, you know? Multiple men coming into their safe space, these men who claim to say that they care for you and love you, and they want they want to be your protectors, then come and just harm you and then sexually harass you, like no child wants that. And then I think when my epilepsy, it just made me not care, that I was going to be like, all of this is happening because of all of the traumatic experiences that I went through as a kid. It's all coming up now. And you guys are going to hear regardless of you like it or not, like I'm just going to tell I'm just going to speak it and if you guys don't want it, then believe me, then it's that's all on you. But it's gonna be for the better of my health. Yeah, it's gonna be better for the state of my mind, you know, and if other people in my community of my cousins or you know, family, friends hear about it, and maybe something happened to them, then they can speak up about it, too.
Yeah, so true. Makes it more... it's not acceptable, but if you can have some open..., yeah, it's talked about, it's more, it's more obvious, and people have to address it. But people are scared, aren't they? And it's crazy. But you know, the effect on you. And being a teenager as well, I was just thinking, I read that you're quite you're keen to sort of, I don't know, do a lot to help young teenagers, like you were in terms of epilepsy and being a teenager, I think it's such a crucial time in anyone's life, never mind what you've been through so, you know, deeply. Mental health is huge, obviously, and dealing with epilepsy is very tough on a teenager, never mind all the other stuff. What would you say to her if you knew someone who was kind of, you know, early teens who just got diagnosed? Or you could go back to your teenage self about epilepsy? Would you have anything you could say?
Yeah, what I would say would be like, I would tell anyone that's like, either going through the process, or whatever I would say to them, or even myself as like a young teenager, listen, that these episodes, what they're going to do for you is tell you and show you who you are, it's going to build you into the person that you most want to be because it will help you with your state of mind and how to function to and to give recognition to the things that are most important to you in life. You know?
Yeah, well...
Because I feel like my epilepsy has really helped me regardless. Even though I was so negative in my head, I've always tried to push out positivity onto other people. And I just want to see other people happy. Like I've I would never wish honestly like, with epilepsy, I wouldn't wish this on anybody. I would never want to see even my worst enemy, like even suffer with it every day. Even when I was going through my experiences growing up, I said 'You know what? Maybe God put this on me because my siblings, they could never handle what I can handle right now. You know, the, the amount of stress and just like the amount of drainage that you that you get from it. And just like the mental state behind it. And just I was isolating yourself from people also and then you thinking that you have to turn to, towards all the substance abuse to find some sort of happiness, it's no, you don't I don't think a lot of people, not a lot of people can really handle what epileptics really go through. We all have our own journeys, and we all go through our own, you know, like, our own pains with it.
Yeah, everyone's very different, aren't they? But I think there's flip sides of, there's a whole spectrum of experience and people feeling either so powerless and so I don't know, you know, dealing with being ashamed and having their independence and then other people, they get to another place where they're like, you know, this, I'm more powerful and might not control it but I don't know, I guess it's really different for everybody, isn't it your mental sort of acceptance and how you feel it can change day to day, I'm sure.
Yeah, exactly. And it's just, I think, it's just how you perceive it end of the day to, you know, when you, when you look at it at a negative narrative, all you're going to gain from, it's just always bad things happening to you. And you're always going to be feeling bad things. But then when you look at it in a positive, and you're gonna be like, you're gonna wake up from those episodes, you're gonna feel even more empowered after because you're like 'oh, I woke up from this episode, this time, you know, now..'
Yeah - ''I survived'.
Now I can go and march and show these... show these people that regardless of my medical state, I'm still able to strive and go reach the end of the tip of of that tree.
Yeah.
I'm still able to, to climb. Regardless, I may have a few fall-downs, but I'm still gonna climb up. And when I climb up, I am going to find that crown or whatever it is that you are reaching for, you know, because, like life itself is just... it's just, it's just a miraculous, like, vortex to be honest. Because literally like a vortex, you have your ins and your outs, and you just just got to choose carefully.
Yeah.
...who you want to be and how you want to be and how you want to perceive your conditions. And where you want to stabilize your intentions, really, you know,
Yeah. And it's amazing the business you're in as well. To be that kind of voice. And whether you choose to be the voice or not, and sometimes it chooses you maybe, but to be, you know, in your career doing so well. And are people quite surprised when you tell them about epilepsy, in your kind of work situation?
Yes, people are very surprised. They're like, they get quite like scared. They're like, oh, are you gonna, like fall down? Like, I'm like, Do you guys know there's like nine different types of epilepsy? Like, it's not always the typical, you're getting jerky, you're gonna fall you're gonna have foam coming out of your mouth, you know? And when I tell them, they're they're always just shook. And they're also shocked that they're like, 'I did not know this'. You see, I'm like, listen, you will never tell who is an epileptic, who is, you know, somebody who has ADHD or like these physical disabilities aren't written all over our bodies, you know?
No.
And you cannot just assume something that you have not educated yourself on, you know? And just judge automatically. But I think people are starting to understand a bit, it's like the people who I've told I am epileptic, and they're starting to build more recognition to it, like they want to learn about they want to understand it, they're like, honestly, I like I just did not know about this at all.
Yeah, it's interesting. I think it's the brain. The brain can scare people can't it? Things that people can't see. And the thing of being like, 'Oh, you're like a ticking time bomb. It could go off any second.' And most of the time, it's, you know, it's not always like that, and the fears that people have... so it must be kind of irritating when you have to educate people but then it does have a great impact.
I honestly enjoy it.
Yes.
Like, even if their opinion on it is quite bad, I'm like, eventually something's gonna happen in their life and they're gonna be like, 'Oh, wow, that's what she meant', you know, and it's gonna change their whole perspective, like, end of the day. So even me I was I was very... I was very naive and very loathe to even wanting to learn about my own condition cos I just did not want to be a part of it, I did not want... I wanted to push it away. I just I'm like I did not want to be in that category, you know?
Yeah.
At all.
Because that makes it too real.
But when you learn to accept it I think it gets easier. Like I had an episode a few weeks ago, and... it used to take me a whole month to recover. And there would be the next day to have one full day of sleep. The day after I was up and going back to work. I went back to the gym, you know, I was just doing my daily routine again. And I was like, you know what? It's really much more easier on me knowing now that I have accepted it and I'm like, and I'm fine with it. And I'm not just going to just build like this blank wall towards it anymore.
Yeah.
I'm going to make sure like, people... if anything I want to do in this industry. If I ever leave it is let people know that the people who come in, you cannot always just automatically assume somebody... just judge somebody off of the bat, because you don't know what somebody is facing with behind closed doors.
Yeah. So have you sometimes had to be recovering and missed a job? Or has it actually been okay? You know, if you're recovering from a seizure,?
I don't think I really had an episode when I had like a job the next day. Yeah.
Okay.
It always happened after I had like these long weeks of work. And then when I had like this one week of break, then I think like, that's when the triggerments just came out of nowhere. And then that's when I had to recover myself again.
Yeah. That's like with a lot of things, isn't it? You know, you work yourself to the bone, and then it's when you get some time off when you relax. And then you suddenly get ill, and you're like 'oh, what?!
That's right!
But just the way the world is, isn't it? I guess.
Yeah.
So what's your next project? Have you got some shoots coming up?
Yes, I have work on Monday. I have work like all next week. They're all campaigns. H&M, Matalan...
Wow!
River Island... The week after going to Paris for Mugler.
Wow, they love you don't they? You're very big with Mugler aren't you?
I know. A lot of people [laughs] Yeah, I love Mugler. They're like my family. They're such a nice team. They're so like, Casey, the designer himself really wants to build inclusivity and diversity within body shapes and you know, of complexion and just have different backgrounds. So I'm like, I'm here for it. Like, it's gonna, I'm gonna come.
It's great timing, isn't it? I guess, and being quite an amazing person [both laugh]. You know, some of these things...it's brilliant that the world is changing a little bit, and especially the diversity in, you know, in modelling and stuff. It's a big change, isn't it?
Yeah.
About time!
It really is.
And also even, you know, we're talking about H&M, Matalan. They're, you know, they're stuff my kids would buy. And I would buy, and it's brilliant when you've got such a great range of sizes. And you know, real women.
Yeah. Real people you know, it's really... it's crazy, because even before you come into this industry, I did not think of these models as people. I was like, just pretty faces standing in front of the camera, just, you know, just trying to sell clothes because they want to like, you know, because they're obviously getting paid for it. They're getting paid massive money
Mmmm.i
But meeting other models too and seeing, hearing their stories and I'm just like, 'wow!', I'm like, I was so naive, and just uneducated on this because you guys actually have lives.
Yeah, and you're not just a vessel in a clothes hanger! That's what they used to call... Oh, that's brilliant. Have you made some good friends in the industry?
Yes, I have.
Oh, good.
I made good friends and... and I just hope it keeps building and I keep meeting more amazing, more amazing, great people and being able to like work someday....work one day...One of my greatest dreams is to work on a campaign that has to do for epileptics. I want to do a campaign and then just make like... and do like a collab with like H&M, Zara, you know, something with Vogue or anything. Just build awareness to epilepsy because I feel like society, they're quite... they still don't know about it. They don't really educate themselves too much about it. Because it's not a very... like, what one out of like, 20 people have epilepsy? Or is it like 100 people?
It's 1 in a 100.
Yeah, so it's not...
It might be more. There's a lot of people undiagnosed.
And then it's just when when you don't know, people... you get frightened from it. You get frightened from the unknown.
Yeah.
Bringing more awareness to society and in the industry can really save someone's life.
Yeah. And just start conversations as well. You know, bringing it out of the shadows is sometimes stuff we'll talk about a lot. Taking away the shame and that fear and weird things that people think about epilepsy. It all helps having these conversations and it's making it more, you know...it's everywhere, you know, it's like for a lot of things. As long as people start talking about it and there's not this culture of hiding your truth, I guess.
Oh, thank you, anything to help, like, I am here, like, anything you guys need me to, like, you know, share on my social media, any events, anything I am.. I'm willing to do, I am there. Like, anything to help build awareness and just to put a positive content on, you know, on epilepsy and letting people understand our lives aren't always easy, you know? We don't always get to get up every day and just have a simple life getting up and go. Sometimes we have those days where a fit will just come out of nowhere, and you're like, 'I took care of myself so well this whole month, why...?'.
So unfair.
Yeah.
So unfair.
So it's getting people to understand a little bit more and just to be nicer to other humans, you know, just kinder and more understanding that you know, what, okay, maybe the person is acting like this, because something is going on in their life, I may not know. So let me loose off a bit and let them just take a little breather.
Thank you so much to Claudia, and, of course, to Ariish for sharing such a powerful story - really, really inspiring and what Ariish is trying to do in her field of work, you know, modelling, it's truly inspiring. So thank you, and I'm sure you'll agree, what a powerful story. And of course, if you do have any questions, you have any comments or you'd like to be on epilepsycast, you know, just as Ariish did, you can contact us on podcast@epilepsy.org.uk and of course, please do follow us on all social platforms @Epilepsy Action. And of course, if you listen to us on Apple Podcasts, please leave us a review or a rating, or if you listen to us on Spotify, or any other podcast platform, click that 'follow' button and you'll get new episodes popping up in your feed whenever we put them out as Series Two draws ever near! So thank you once again, as always a pleasure to do this podcast and it's a truly a pleasure to know that someone like Ariish has listened to the podcast and found a safe space and can listen to other people's stories and feel, you know, heard, feel recognized. And really that's what this podcast is truly all about and it wouldn't be anything without you listeners.
