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Speaker 1: Apoche production. Welcome to Secrets of the Underworld. I am

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Speaker 1: Neil the muscle comments, and in this.

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Speaker 2: Episode, I speak with Amit Ghosh, who shares his journey

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Speaker 2: living with a rare condition and how he turned pain

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Speaker 2: into purpose.

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Speaker 1: And I realized other children didn't want to sit next

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Speaker 1: to me. They would hide behind their parents and point

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Speaker 1: out my face and say, mummy, mummy, what happened to

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Speaker 1: that boy's face. A kid pointed at me and said, hey,

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Speaker 1: you don't need a Halloween mask. You've got a permanent

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Speaker 1: Halloween mask on your face. Twenty five years on from now,

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Speaker 1: I still think of that comment. I did not accept

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Speaker 1: the left hand side of my face. I hid it.

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Speaker 1: But on the third occasions he said to me, I'm it.

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Speaker 1: If I marry you, I'm not going to marry half

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Speaker 1: of your face. I know exactly what you're doing. Stop

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Speaker 1: stop hiding yourself and own it. Thank you for coming on.

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Speaker 2: When I read your story and seeing an article on you,

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Speaker 2: I actually was very intrigued by this because I'd never

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Speaker 2: seen a story like this ever, so I, you know,

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Speaker 2: definitely wanted you to come on the podcast, and I

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Speaker 2: was grateful that you've found the time to come on,

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Speaker 2: So thank you for coming on by podcast. I just

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Speaker 2: want to say that before we get into everything else

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Speaker 2: about your life and what you had gone through, just

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Speaker 2: tell me about you know, you growing up and the

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Speaker 2: difficulties of growing up.

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Speaker 1: So I was born with this rare genetic condition called neurofibromatosis.

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Speaker 1: It's a condition that causes tumors to grow on nerves.

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Speaker 1: So when I was about two years old, they realized

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Speaker 1: that there's some bumps that are appearing on the left

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Speaker 1: hand side of my face. They thought I might have

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Speaker 1: tripped or fold or something. But when we went to doctors,

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Speaker 1: it very quickly sort of realized that this was a

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Speaker 1: condition called neurofibromatosis. Condition no one had heard of in

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Speaker 1: my family. We didn't know how to really respond and

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Speaker 1: deal with it. I mean I was two years old,

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Speaker 1: so it was it was my family that were going

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Speaker 1: through that initial stage of really making sense of it.

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Speaker 1: For me, I think I realized things in early sort

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Speaker 1: of lower school, so primary school in UK, when I

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Speaker 1: was in year four, year five, maybe when I was

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Speaker 1: about five or six years old going into school, when

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Speaker 1: I realized other children didn't want to sit next to me,

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Speaker 1: other children didn't really want to be my friend. That's

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Speaker 1: what I really realized. There's something different, and at that

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Speaker 1: age you don't really realize what depression or anxiety is.

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Speaker 1: But looking back now, I know I was going through

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Speaker 1: those emotions because I didn't want to go to school.

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Speaker 1: I didn't want to be in front of other children

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Speaker 1: because they would hide behind their parents and point out

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Speaker 1: my face and say, mummy, mummy, what happened to that

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Speaker 1: boy's face? Wow? It was really challenging at that time.

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Speaker 1: It was really really challenging. Whether he's just helpful back

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Speaker 1: then to an extent, yes, But like I always use

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Speaker 1: an example of pe lessons, So whenever we go in

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Speaker 1: to pee lessons, you'd go into the p hall and

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Speaker 1: everyone would come over and the teacher would say, hey,

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Speaker 1: go pair up with somebody, and then everyone would run

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Speaker 1: to their athletic person or their friends. And I would

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Speaker 1: stand there waiting for someone to pair up with me. Wow,

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Speaker 1: and nobody would want to do that because they were scared,

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Speaker 1: they were curious, and at that point the teacher would

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Speaker 1: either pair up with me himself or he would nominate somebody.

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Speaker 1: So there was only much that teachers could do. I mean,

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Speaker 1: there was an incident where I got called a name.

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Speaker 1: A bit later on in my life, when I had surgery,

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Speaker 1: I got called They were talking about Halloween masks. Children

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Speaker 1: were talking about buying Halloween masks, and a kid pointed

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Speaker 1: at me and said, Hey, you don't need a Halloween mask.

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Speaker 1: You've got a permanent Halloween mask on your face. Now,

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Speaker 1: that comment really really upset me. In twenty five years

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Speaker 1: on from now, I still think of that comment and

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Speaker 1: it upsets me. But when I told the teachers and

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Speaker 1: the teachers called those boys into a room, all that

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Speaker 1: those boys said was I was only a bit of Bantermiss.

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Speaker 1: We were only joking around. So you know, as young children,

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Speaker 1: you know, we don't know at that age, don't We

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Speaker 1: just don't know what's a joke or a laugh at

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Speaker 1: that time. Is something that was at least for me,

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Speaker 1: a lifelong scars And I still remember today and say

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Speaker 1: that you are two years old, that you kind of

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Speaker 1: found out about the disease that you had, Well, what

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Speaker 1: about prior to that, when you were born? Did the

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Speaker 1: doctors know anything then or they didn't know. I was

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Speaker 1: born in a small town in India, and now we

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Speaker 1: know that. You know, when a child has neurofibromatosa's. There

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Speaker 1: are some signals there. There are these small spots that

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Speaker 1: will appear in the body. In the town I was born,

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Speaker 1: and it was a very small town in India. They

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Speaker 1: didn't know that. And now we will look out for

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Speaker 1: it because we know. And nobody in my family had

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Speaker 1: this condition, so we didn't know to look out for it.

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Speaker 1: These spots just looked like freckles on the skin. Wow,

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Speaker 1: but no, we didn't know until the age of two.

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Speaker 1: Nobody really How did your parents deal with this? My

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Speaker 1: dad used to live in England. My dad living in

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Speaker 1: the time when I was born, he had a restaurant here.

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Speaker 1: His ambition, I'm the last born of four children. From

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Speaker 1: the youngest, his ambition was that he would move back

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Speaker 1: to India after I was born. You know, whatever he

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Speaker 1: is done, he would close up shop and then moved

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Speaker 1: to India. And this is in the late eighties early nineties.

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Speaker 1: And when I was born with this condition, they realized

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Speaker 1: I have this condition. My dad made that brave decision

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Speaker 1: of saying to his family that were moving to England

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Speaker 1: and some of my siblings were in school in high school.

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Speaker 1: They had to uproot their entire life and move to England.

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Speaker 1: So it was a real, real challenge for them. But

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Speaker 1: I think my dad played a big role. My mother

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Speaker 1: to make that move from India to England restart her

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Speaker 1: life here in a small home, sharing it with my

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Speaker 1: uncle at that time, it was really really difficult for them,

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Speaker 1: really really difficult. But like I said, my dad played

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Speaker 1: a big role in normalizing my condition. Cricket was a

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Speaker 1: big hobby for me as a young child. I used

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Speaker 1: to love playing cricket, but I always used to be

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Speaker 1: scared to play cricket with other children. And my dad

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Speaker 1: bought me a bat and a ball and I remember

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Speaker 1: my uncle saying to my dad saying, what are the

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Speaker 1: ball hits his face, you know, and you know, ruins

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Speaker 1: it even more. And my dad said, my boy wants

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Speaker 1: to play cricket. He wants to play cricket. And is

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Speaker 1: that normalization that helped shape who I am today? How

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Speaker 1: many brothers and sisters do you have? So I've got

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Speaker 1: one brother, two sisters, Okay, so how did they take it?

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Speaker 1: When did they realize that there was something wrong with

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Speaker 1: the younger brother? I think, you know, obviously, when when

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Speaker 1: I was diagnosed, everyone had this shock that there's something

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Speaker 1: wrong here. They didn't want to move to England. You know,

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Speaker 1: they were in school, they had their friends, their life.

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Speaker 1: For them, it was a challenge. They're grateful to me

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Speaker 1: now because I think their life got enhanced by moving

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Speaker 1: between England and having the education and everything the infrastructure

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Speaker 1: around them that they had. At that time. There was

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Speaker 1: remorse that they They talked to me quite openly about

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Speaker 1: it now and say that, you know, they weren't very

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Speaker 1: happy with me, you know, lashed born and suddenly now

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Speaker 1: because of me, they're having to leave all their friends

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Speaker 1: and their dreams, their their moments behind and moved to

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Speaker 1: a country which was cold, cloudy, snowy and miserable. That's

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Speaker 1: that's how they described it at that time. But didn't

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Speaker 1: they see that, you know, they had to do it

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Speaker 1: because of your condition, you know what I mean that

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Speaker 1: they didn't realize that. I mean they were young. They

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Speaker 1: were young, so I mean, you know one of them

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Speaker 1: was what five six years old, the other one was

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Speaker 1: like nine. They just wanted to have fun, but the

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Speaker 1: days but okay, they were that yeah, they were that age.

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Speaker 1: So were they the same as your school kids? A

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Speaker 1: bit weary with playing with you or playing with you.

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Speaker 1: I'm not playing with my brother because of this condition

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Speaker 1: or were they okay with you? They were okay with it.

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Speaker 1: They were okay with it because they they grew into

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Speaker 1: knowing about it. Yeah, it wasn't. It wasn't like they

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Speaker 1: wanted to avoid me. My brother is a big was

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Speaker 1: with a big protector of me, and we used to

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Speaker 1: play cricket together and everything. It was just that move

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Speaker 1: were with their friends. It's like, you know, you tell

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Speaker 1: a high school kid that we're moving now because that

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Speaker 1: has got a new job and he's got to leave.

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Speaker 1: It's one of those things and you've got your friends,

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Speaker 1: You've got the little candy shop that you opened in

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Speaker 1: school and you're selling pop. My brother used to like

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Speaker 1: do that. You'd nag my mother to buy him a

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Speaker 1: piano because he's he likes his piano that I've seen.

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Speaker 1: He'd play with it for two weeks and then he'd

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Speaker 1: go and sell it in school. So you know, it

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Speaker 1: was that kind of thing lifestyle he had. Yeah, and

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Speaker 1: my sister and everyone had, and that suddenly it was

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Speaker 1: all up rooted going back to school.

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Speaker 2: Like because I understand the way that there was a

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Speaker 2: lot like when I was in England, and I grew

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Speaker 2: up like I came out here when I was eighteen,

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Speaker 2: So I understand that the way the banter was and

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Speaker 2: the and the bullying was in school because back then,

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Speaker 2: you know, believe it or that, I used to get

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Speaker 2: called the N word because I was the only kid

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Speaker 2: who went overseas came back with a town and they

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Speaker 2: didn't understand that, and they didn't understand how a white

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Speaker 2: kid can go overseas come back a different color, and

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Speaker 2: I would get called the N word and they wouldn't

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Speaker 2: talk to me for weeks.

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Speaker 1: And these are of my best friends. So I know,

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Speaker 1: I understand the banster that was going on back in

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Speaker 1: them days. But what I'm trying to get with it

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Speaker 1: how bad was the condition then when you were growing

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Speaker 1: up in primary school before you went into secondary school. Oh,

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Speaker 1: it was really bad. So as a part of the condition,

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Speaker 1: it can grow quite quickly, quite rapidly. So for the listeners,

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Speaker 1: the left hand side of my face is completely affected

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Speaker 1: by this. It's very slow and it's very big. I

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Speaker 1: wear an artificial eye. Now what you're seeing we know

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Speaker 1: as an artificial eye. When I was in year seven,

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Speaker 1: so when I was eleven years old, the eyelid had

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Speaker 1: grown so so bad that the doctors described it as

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Speaker 1: the brain would push the eye out if they don't intervene.

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Speaker 1: And there's there's images and pictures on my on my

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Speaker 1: social media. I've looked before, and I had my eye

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Speaker 1: removed in year seven. So in year seven I had

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Speaker 1: this life changing, eighteen hour surgery. Eleven year old kid

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Speaker 1: having this live changing surgery and I removed. So I've

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Speaker 1: got this confidence code that I talk about. It's the

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Speaker 1: four steps of confidence. Step one is embracing our personality.

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Speaker 1: So in year six I had a shift. I told

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Speaker 1: her that I liked cricket and it could never play

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Speaker 1: with other kids, but one day I asked him if

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Speaker 1: I can play, and reluctantly they handed me the ball.

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Speaker 1: I still remember the batsman was holding it with one hand, going, oh,

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Speaker 1: what's this kid going to do? But little did they

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Speaker 1: know that I was bowling in my garden for the

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Speaker 1: last few years. So I came in bowling and I

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Speaker 1: bowled really well, and I hit the bin. So not

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Speaker 1: the stunt, the bin because you're standing the bin. And

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Speaker 1: I hit the bin and I get him out, and

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Speaker 1: suddenly I go from the boy who's got a funny

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Speaker 1: face to the boy who plays cricket. Yes, But then

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Speaker 1: I go into year seven and I have this surgery

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Speaker 1: and I'm back down. And for a very very long time, Neil,

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Speaker 1: I did not accept the left hand side of my face.

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Speaker 1: I just didn't I hit it, the photographs I took,

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Speaker 1: the places I sat, I just didn't want to show

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Speaker 1: the world the left comes out of my face. So

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Speaker 1: did you have times when you didn't want to go

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Speaker 1: to school or you didn't want to go out the house.

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Speaker 1: Almost every single day, every single day, I did not

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Speaker 1: want to go to school because I knew, you know,

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Speaker 1: because I can't see from the left hand side of

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Speaker 1: my face. I used to have other kids who would

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Speaker 1: sit on the left hand side of my face and

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Speaker 1: do like rude gestures, and then the whole classroom would

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Speaker 1: start laughing, and I wouldn't know why they're laughing, and

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Speaker 1: then suddenly I'd look and then as somebody just put

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Speaker 1: their finger up at me, and it was just funny.

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Speaker 1: And you know, even some of my friends who were

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Speaker 1: my friends people who they would laugh as well, because

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Speaker 1: it's a collective thing. Everyone's just thinking it's funny. And

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Speaker 1: the teachers back then didn't help at all. Even in

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Speaker 1: secondary school, they tried to make it stop, like you know,

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Speaker 1: they'd tell the kids to stop it, they'd have a word,

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Speaker 1: But no, I think you know what really should have happened.

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Speaker 1: And the reason why I do what I do today

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Speaker 1: is you should have speakers coming in and speaking about

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Speaker 1: visible debut. Now what I do is I go into schools,

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Speaker 1: like I said, and I talk about my condition and

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Speaker 1: I talk about my experiences in school. And one of

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Speaker 1: the reasons I do it is because if someone had

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Speaker 1: done that to me when I was in school, and

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Speaker 1: a speaker came in and spoke about their journey and

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Speaker 1: how they it would have made a big difference to class.

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Speaker 1: The teachers a saying hey, stop at kids, don't do this,

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Speaker 1: it's not nice. Yeah, doesn't have that impact. Yeah, correct. Correct?

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Speaker 2: When did you actually get the eye patch? Prom How

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Speaker 2: old were you then.

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Speaker 1: Charles eleven years old when I was made eyepatch. I

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Speaker 1: had to wear an eyepatch for about a year before

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Speaker 1: the face healed, and then they started making this prestigiously.

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Speaker 2: So tell me when you went in for the surgery, Like,

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Speaker 2: because you're only like ten or eleven years old, you're

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Speaker 2: going in for this major surgery.

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Speaker 1: What is going through your head? You know what I mean?

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Speaker 2: As an eleven year old kid, did you even know

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Speaker 2: what you're going to get into for this?

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Speaker 1: I didn't know what was going into. What I knew

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Speaker 1: is I'm going to have and it have an artificial eye. Yeah,

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Speaker 1: both of my eyes will look better. And I was

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Speaker 1: just excited about that prospect. But now I hear stories

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Speaker 1: from my mum about my late father locking himself up

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Speaker 1: in a room crying after signing the consent form, coming

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Speaker 1: home and saying, I don't know what I've just done.

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Speaker 1: You know what if we lose our son. It was

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Speaker 1: my mother and my father who really went through the

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Speaker 1: turmoil of or not me. What was the recovery like

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Speaker 1: after this? As eleven year old kid, I was in

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Speaker 1: hospital for about six seven weeks. I had like braces

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Speaker 1: on my brain because the way they did this was

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Speaker 1: to cut my skull and take the eye out from

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Speaker 1: the back of the skull. And I'm still very close

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Speaker 1: to the consultant and the doctors who were involved in

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Speaker 1: that surgery, and they when they tell me what it involved,

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Speaker 1: it's it's very scary.

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Speaker 2: Wow, now you're older with this and you can and

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Speaker 2: you look back at what you've been through. I personally,

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Speaker 2: I don't know how you go through because I've not

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Speaker 2: been through anything as difficult as that. But I know

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Speaker 2: what it's like to lose friends and not have friends, because,

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Speaker 2: as I said, when you're a kid, even up to

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Speaker 2: age of fourteen, and you don't have friends or because

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Speaker 2: of some stupid banter, it's lonely, you know what I mean.

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Speaker 2: And to come home from school knowing that you haven't

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Speaker 2: got a friend, and then you're you're at home, you

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Speaker 2: see and everyone else play in the park and you

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Speaker 2: can't go over to play with them.

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Speaker 1: What was going for your head? Like?

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Speaker 2: Are you just a loner in the house or you

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Speaker 2: are you going out and just doing your own thing?

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Speaker 1: What was because you said you didn't like to go

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Speaker 1: out too because of the way you looked. I was

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Speaker 1: a loner. I was aloner. And that was one of

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Speaker 1: the names I used to get called. From the many

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Speaker 1: names I used to get called, loner was one of them.

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Speaker 1: I used to sit in the corner of classrooms really

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Speaker 1: really upset. I used to sit in my bedroom a

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Speaker 1: lot and draw on my wall in my bedroom, or

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00:14:59,081 --> 00:15:03,441
Speaker 1: you know, write or play play Feefa on the laptop

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Speaker 1: for like what made you happy back then? What was

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Speaker 1: making you happy? And to stay from going insane. Cricket

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Speaker 1: was a big thing, playing cricket. I was to come

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Speaker 1: home and play cricket. I remember a coach saw me

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Speaker 1: playing on the street and asked my dad if I

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Speaker 1: could go and play in the club. So cricket made

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Speaker 1: me really happy. Music, so percussion instruments. I used to

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Speaker 1: love playing Indian percussion instruments that were bigger than me.

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Speaker 1: So I'd go into a wedding and I'd pick up

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Speaker 1: a drum and I'd start playing it because I was

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Speaker 1: so conscious that people are staring at me. If I

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Speaker 1: pick up a drum, people, I can focus in the drum,

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Speaker 1: and I think that people are going to focus in

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Speaker 1: the drum. So that those were the things that that

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Speaker 1: was like my escape. Really how was it going to

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Speaker 1: family functions like a wedding? How was that really hard?

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Speaker 1: Really really hard? Because like Indian weddings in itself are

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Speaker 1: so like massavish, flamboyant, you know. And I remember a

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Speaker 1: story this is this is about about six five or

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Speaker 1: six years ago, just for married. In fact, I was

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Speaker 1: going to my friend's wedding and Auntie G and an

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Speaker 1: anti G in our culture is known as the one

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Speaker 1: that just goes around and gossips all the time. So

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Speaker 1: she came over to me and she said are you

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Speaker 1: Are you upset? And I was like, why would I

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Speaker 1: be upset? She's like, no, we heard that your family

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Speaker 1: is trying to get you an arranged marriage and it's

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Speaker 1: not really working out. Are you upset? And by the way,

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00:16:27,561 --> 00:16:30,641
Speaker 1: arrange marriages and our culture are like real life tender

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00:16:31,281 --> 00:16:37,521
Speaker 1: photographs are exchange versus swiping is a parent, so my

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00:16:37,641 --> 00:16:41,521
Speaker 1: photos were always rejected by parents. So she said, oh,

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00:16:41,721 --> 00:16:43,201
Speaker 1: I heard you know your your family's trying to get

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Speaker 1: you in arrange marriage, but it's not really working out.

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00:16:45,721 --> 00:16:47,921
Speaker 1: And then she tried to comfort me, and she tried

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Speaker 1: to comfort me by saying, don't worry. If you had

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Speaker 1: a daughter, would you want your daughter to marry someone

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Speaker 1: that looks like you? And that was meant to be

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00:16:57,961 --> 00:17:02,401
Speaker 1: comforting and and you knoww disability no disability. We when

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Speaker 1: we go into weddings or when we go into a

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00:17:04,481 --> 00:17:07,961
Speaker 1: new environment, we are conscious about ourselves. We do feel

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Speaker 1: in school and we are always thinking if someone looking

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00:17:11,160 --> 00:17:13,200
Speaker 1: at me is someone judging me. For me, that was

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00:17:13,241 --> 00:17:15,921
Speaker 1: just multiplied by one hundred. So I would just sit

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00:17:15,961 --> 00:17:18,321
Speaker 1: there playing on my phone, looking down, not making eye

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00:17:18,321 --> 00:17:21,321
Speaker 1: contact with anybody, and then slowly I would just go

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Speaker 1: and speak to somebody I know really well or something

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00:17:24,201 --> 00:17:27,721
Speaker 1: like that, or stand in the corner somewhere. Family events

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Speaker 1: are really really hard. Did things get better as you

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Speaker 1: got older with people in school? Did they come to

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00:17:33,640 --> 00:17:35,601
Speaker 1: terms of it or did you think it got harder?

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00:17:36,561 --> 00:17:40,841
Speaker 1: Things got better in college definitely, because I learned this

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Speaker 1: thing of embracing who you are, like be like, you know,

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Speaker 1: embracing my personality. Although I didn't accept the left hand

359
00:17:47,281 --> 00:17:50,801
Speaker 1: side of my face. I so you're you're still not

360
00:17:50,880 --> 00:17:53,960
Speaker 1: accepting it. No, no, no, I didn't learn to accept

361
00:17:54,001 --> 00:17:56,121
Speaker 1: the left hand side of my face until I met

362
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Speaker 1: my wife. Wow, that's the story which I'll come on to.

363
00:17:59,441 --> 00:18:03,360
Speaker 1: But college was a little bit better because I started

364
00:18:03,400 --> 00:18:07,001
Speaker 1: to make friends just by talking about ball, cricket, things

365
00:18:07,041 --> 00:18:09,440
Speaker 1: like that. But still I used to sit in a

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Speaker 1: certain part of the room. When I would stand with

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Speaker 1: my friends, I would stand on the right hand side,

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00:18:13,721 --> 00:18:15,961
Speaker 1: so they've seen this side of the right side of

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Speaker 1: my face. But yeah, I did not learn to accept it.

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Speaker 1: And what happened was after that Auntie g experience about

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Speaker 1: a year. Year and a half after that, I started

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Speaker 1: speaking to a wonderful woman in India. My friend introduced

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Speaker 1: us because my family were looking to get me an

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Speaker 1: arranged marriage. And my friend was like, hey, we speak

375
00:18:36,080 --> 00:18:38,080
Speaker 1: to this girl. I think she should. You and her

376
00:18:38,120 --> 00:18:41,080
Speaker 1: would really get on. And he knew her and he

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00:18:41,120 --> 00:18:43,281
Speaker 1: went and spoke to her and she said no. First

378
00:18:43,360 --> 00:18:45,680
Speaker 1: she said, please don't give my number to this man.

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00:18:46,041 --> 00:18:47,720
Speaker 1: I don't want to move to England. I don't want

380
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Speaker 1: to get married. I'm too busy. She was a makeup

381
00:18:49,880 --> 00:18:52,440
Speaker 1: artist by profession. And he came and told me and

382
00:18:52,481 --> 00:18:54,761
Speaker 1: he was like, she said no, but message her anyway.

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00:18:54,801 --> 00:18:58,680
Speaker 1: I'm like no. It was like, no, do it? Trust

384
00:18:58,721 --> 00:19:01,120
Speaker 1: me to send her a message. One of my sisters

385
00:19:01,160 --> 00:19:04,321
Speaker 1: has now moved back to India and my wife now

386
00:19:04,561 --> 00:19:06,321
Speaker 1: she used to in the next road next to her.

387
00:19:06,360 --> 00:19:08,801
Speaker 1: She goes, look there's some commonality there. Just message And

388
00:19:08,840 --> 00:19:11,160
Speaker 1: I was like, so I sent her a message and

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00:19:11,201 --> 00:19:13,561
Speaker 1: I said, hey, my friend gave me a number. How

390
00:19:13,600 --> 00:19:16,281
Speaker 1: are you doing ukay? And she did reply for about

391
00:19:16,400 --> 00:19:17,961
Speaker 1: two three hours and I was like, woh, my done

392
00:19:18,041 --> 00:19:20,281
Speaker 1: this is just such a bad idea. But then she

393
00:19:20,360 --> 00:19:23,041
Speaker 1: replied back. She replied back saying, hey, I know. He said,

394
00:19:23,080 --> 00:19:25,561
Speaker 1: how are you you okay? And then we started messaging

395
00:19:25,561 --> 00:19:27,801
Speaker 1: and I was talking about my sister living near her,

396
00:19:27,840 --> 00:19:31,080
Speaker 1: and there was some commonality and we started messaging and

397
00:19:31,120 --> 00:19:32,960
Speaker 1: there was a click. There was a click, and we

398
00:19:33,041 --> 00:19:37,240
Speaker 1: can continued messaging and I said to her, I like eating.

399
00:19:37,400 --> 00:19:39,761
Speaker 1: She said, I like cooking. I was like, this is great.

400
00:19:40,360 --> 00:19:42,480
Speaker 1: We weren't made for each other. And we had all

401
00:19:42,481 --> 00:19:45,041
Speaker 1: these answer and I used to video call her a lot,

402
00:19:45,080 --> 00:19:46,640
Speaker 1: and I used to video call her and I used

403
00:19:46,681 --> 00:19:48,600
Speaker 1: to cover the left hand side of my face and

404
00:19:48,640 --> 00:19:51,321
Speaker 1: show her the right hand side, and she let it

405
00:19:51,360 --> 00:19:53,640
Speaker 1: go once or twice. But on the third occasion she

406
00:19:53,640 --> 00:19:55,600
Speaker 1: said to me, I'm it if I marry you, I'm

407
00:19:55,640 --> 00:19:57,960
Speaker 1: not going to marry half of your face. I know

408
00:19:58,041 --> 00:20:01,600
Speaker 1: exactly what you're doing. Stop stop hiding yourself and own it.

409
00:20:02,360 --> 00:20:04,920
Speaker 1: And it was at that point that I learned to

410
00:20:05,041 --> 00:20:07,360
Speaker 1: do big things. One that she's the one for me

411
00:20:07,441 --> 00:20:11,081
Speaker 1: because you know, actually accepts me. But two, I need

412
00:20:11,080 --> 00:20:13,921
Speaker 1: to learn to accept who I am before others can

413
00:20:13,961 --> 00:20:17,361
Speaker 1: accept me. And now when I go and speak at schools,

414
00:20:17,360 --> 00:20:20,401
Speaker 1: and colleges I very much talk about this point that

415
00:20:20,801 --> 00:20:23,840
Speaker 1: we live in this world now where we're all constantly

416
00:20:23,880 --> 00:20:27,761
Speaker 1: seeking validation externally. We want to be liked by others.

417
00:20:27,761 --> 00:20:29,600
Speaker 1: We want to post a video and social media and

418
00:20:29,640 --> 00:20:32,761
Speaker 1: get more likes than our friends. We want to we

419
00:20:32,921 --> 00:20:35,160
Speaker 1: like by our teachers, like by our friends, our parents.

420
00:20:35,160 --> 00:20:39,680
Speaker 1: But we don't spend enough time in liking ourselves. We

421
00:20:39,761 --> 00:20:44,120
Speaker 1: don't spend enough time in giving ourselves validation. And I

422
00:20:44,160 --> 00:20:46,761
Speaker 1: ask this really funny question in colleges all the time,

423
00:20:46,801 --> 00:20:50,001
Speaker 1: and it gets things giggling, but thinking, I say, would

424
00:20:50,041 --> 00:20:53,440
Speaker 1: you go on a date with yourself? And then they

425
00:20:53,481 --> 00:20:55,200
Speaker 1: think about it, and I'm like, well, if you're not

426
00:20:55,241 --> 00:20:58,160
Speaker 1: going to spend two hours with yourself, what makes you

427
00:20:58,201 --> 00:21:00,761
Speaker 1: think someone else is going to spend that time with you?

428
00:21:01,281 --> 00:21:03,241
Speaker 1: And the same can apply for a job interview in

429
00:21:03,281 --> 00:21:05,841
Speaker 1: a professional world. If you're not going to back yourself,

430
00:21:06,001 --> 00:21:09,241
Speaker 1: why would someone else back you? That's correct, well said,

431
00:21:09,561 --> 00:21:11,120
Speaker 1: that was actually I was coming up to what you

432
00:21:11,201 --> 00:21:13,840
Speaker 1: just said then, because of how did you go trying

433
00:21:13,880 --> 00:21:17,281
Speaker 1: to find your first job? I worked in call centers

434
00:21:17,640 --> 00:21:20,201
Speaker 1: for a very long time. Was that by choice? Because

435
00:21:20,201 --> 00:21:23,041
Speaker 1: you didn't want to go into the workplace. When I

436
00:21:23,080 --> 00:21:26,041
Speaker 1: think back now, it was I didn't probably accept it

437
00:21:26,080 --> 00:21:28,281
Speaker 1: at the time, but I didn't. You know, A lot

438
00:21:28,281 --> 00:21:30,801
Speaker 1: of my friends went to work in like retail shops

439
00:21:30,961 --> 00:21:33,321
Speaker 1: and things like that, and I went straight into a

440
00:21:33,360 --> 00:21:36,041
Speaker 1: call center, which is why I made a career out

441
00:21:36,041 --> 00:21:39,360
Speaker 1: of sales and marketing and the end of it. But yeah,

442
00:21:39,681 --> 00:21:42,001
Speaker 1: I went and worked in call centers. And I remember

443
00:21:42,001 --> 00:21:45,400
Speaker 1: the very first job that I did, going into work,

444
00:21:45,521 --> 00:21:49,520
Speaker 1: going into training, apparently everyone was informed that there's going

445
00:21:49,561 --> 00:21:52,641
Speaker 1: to be a man starting who has a visible difference.

446
00:21:52,840 --> 00:21:56,561
Speaker 1: Everyone be kind, everyone be nice, And I found that

447
00:21:56,600 --> 00:22:00,680
Speaker 1: a little bit strange thinking about it now. Keep been

448
00:22:00,721 --> 00:22:03,521
Speaker 1: through some point. Was there any pain in this, like

449
00:22:03,880 --> 00:22:07,880
Speaker 1: physical pain or not? The condition has a lot of pain.

450
00:22:08,241 --> 00:22:12,600
Speaker 1: The condition comes with scoliosis, which is a curvature of

451
00:22:12,640 --> 00:22:16,441
Speaker 1: the spine. So my spine is curved. So my love

452
00:22:16,441 --> 00:22:19,440
Speaker 1: of cricket was very short lived because as I got older,

453
00:22:19,481 --> 00:22:21,960
Speaker 1: I could no longer bowl. I was a leg spinner,

454
00:22:21,961 --> 00:22:23,720
Speaker 1: and as I got older, I could no longer bowl

455
00:22:24,400 --> 00:22:27,160
Speaker 1: because of my because of my spine, I had a

456
00:22:27,241 --> 00:22:30,920
Speaker 1: really really long surgery on my spine and after this

457
00:22:31,521 --> 00:22:35,321
Speaker 1: I constantly have neck pain because of it. I constantly

458
00:22:35,400 --> 00:22:37,521
Speaker 1: during the cold, and my face gets very sore and

459
00:22:37,600 --> 00:22:40,801
Speaker 1: very painful. Inside of my mouth, the tumor grows there

460
00:22:40,840 --> 00:22:43,600
Speaker 1: as well, and sometimes I bite into it and then

461
00:22:43,640 --> 00:22:45,961
Speaker 1: it starts bleeding. So you can imagine you're sitting in

462
00:22:46,281 --> 00:22:48,921
Speaker 1: a dinner with some friends and suddenly you bit into

463
00:22:48,961 --> 00:22:53,600
Speaker 1: the tumor and you're spitting blood. And it's horrible, isn't it?

464
00:22:53,400 --> 00:22:56,400
Speaker 1: And can they not remove that? Can they not remove it? Still?

465
00:22:56,801 --> 00:22:59,321
Speaker 1: They can, they can, They can remove it, But the

466
00:22:59,360 --> 00:23:02,080
Speaker 1: tendency of the condition is it will always grow back.

467
00:23:02,360 --> 00:23:04,121
Speaker 1: And when you play with it, when you when you

468
00:23:04,241 --> 00:23:06,480
Speaker 1: temper it, it grows back with more force.

469
00:23:08,001 --> 00:23:10,160
Speaker 2: So going back to when you're the eyepatch and the

470
00:23:10,160 --> 00:23:12,640
Speaker 2: eye patch you've got, now, how how regularly do you

471
00:23:12,681 --> 00:23:15,280
Speaker 2: have to change that from better? Like, because it's had

472
00:23:15,281 --> 00:23:17,881
Speaker 2: an adult one that's an adult size, so so how

473
00:23:18,201 --> 00:23:19,921
Speaker 2: so you would have changed it every time you went

474
00:23:20,201 --> 00:23:21,201
Speaker 2: from a different age.

475
00:23:21,880 --> 00:23:24,761
Speaker 1: I changed it about once year because our skin tone,

476
00:23:24,801 --> 00:23:29,080
Speaker 1: our color, we get wrinkles, we get older, unfortunately, so yeah,

477
00:23:29,360 --> 00:23:31,360
Speaker 1: every year they give me a new one.

478
00:23:31,840 --> 00:23:35,321
Speaker 2: Wow, And it's not that's not painful or anyway or

479
00:23:35,761 --> 00:23:36,481
Speaker 2: it's not like.

480
00:23:38,521 --> 00:23:40,680
Speaker 1: Wow, your viewers will see this, but it literally just

481
00:23:40,681 --> 00:23:43,321
Speaker 1: comes out like dentures, like you know, how you take

482
00:23:44,961 --> 00:23:47,961
Speaker 1: and then it just literally clips back on with magnets,

483
00:23:48,241 --> 00:23:51,200
Speaker 1: so it's it's magnetic to go back on. Wow. But

484
00:23:51,281 --> 00:23:54,441
Speaker 1: it's not. It's not like itchy in any way or discomfort.

485
00:23:55,481 --> 00:23:58,520
Speaker 1: It is very uncomfortable. I've just become very comfortable at

486
00:23:58,561 --> 00:24:01,001
Speaker 1: work now actually, so if we're in a meeting with

487
00:24:01,001 --> 00:24:04,160
Speaker 1: with our direct colleagues, I'll take it off in the

488
00:24:04,201 --> 00:24:08,481
Speaker 1: media because you know, it gets really wet and sweaty

489
00:24:08,521 --> 00:24:12,080
Speaker 1: and uncomfortable. Well, so when when you shower, you'd have

490
00:24:12,120 --> 00:24:13,801
Speaker 1: to take that off or you keep it on. Yeah,

491
00:24:13,921 --> 00:24:15,640
Speaker 1: a shower, I take it off. When I'm at home,

492
00:24:15,681 --> 00:24:17,640
Speaker 1: I leave it off. A lot of times when I

493
00:24:17,681 --> 00:24:21,440
Speaker 1: go to sleep, I leave it off. Jesus Christ. So

494
00:24:21,640 --> 00:24:23,720
Speaker 1: I want to ask you about you. You said that

495
00:24:23,761 --> 00:24:26,600
Speaker 1: when you got older it kind of didn't get us worse,

496
00:24:26,640 --> 00:24:28,640
Speaker 1: It got kind of better. But I actually thought it

497
00:24:28,640 --> 00:24:30,721
Speaker 1: would have got worse because the fact that when you're

498
00:24:30,961 --> 00:24:32,640
Speaker 1: you know, I don't know if you did ever go

499
00:24:32,681 --> 00:24:34,801
Speaker 1: into a pub when you were in college or like that,

500
00:24:34,921 --> 00:24:36,880
Speaker 1: and people on the alcohol I know what they're like

501
00:24:36,880 --> 00:24:39,281
Speaker 1: in fucking England that they get rowdy, get on a

502
00:24:39,321 --> 00:24:41,801
Speaker 1: few pints, and then they'll they'll pick someone out in

503
00:24:41,840 --> 00:24:43,561
Speaker 1: the pub that they want to fucking have banter with.

504
00:24:43,921 --> 00:24:46,641
Speaker 1: Oh yeah, so no, let me let me. It got

505
00:24:46,640 --> 00:24:50,121
Speaker 1: better in terms of my friends direct friend circle. They

506
00:24:50,400 --> 00:24:52,440
Speaker 1: became more supportive and they would do banter with me

507
00:24:52,600 --> 00:24:55,160
Speaker 1: just like they do banter with their friends. Yeah. What

508
00:24:55,241 --> 00:24:59,321
Speaker 1: wasn't good was going into pubs, going into cafes and

509
00:24:59,360 --> 00:25:00,920
Speaker 1: my friends were like, I want to go knock that

510
00:25:00,961 --> 00:25:02,321
Speaker 1: guy out right now. I want to go punch me

511
00:25:02,321 --> 00:25:04,160
Speaker 1: in his face. And I'm like why, it's like staring

512
00:25:04,160 --> 00:25:05,680
Speaker 1: at you r a gold stare up me. It is

513
00:25:05,761 --> 00:25:07,680
Speaker 1: like I bet if you saw her face in the

514
00:25:07,681 --> 00:25:10,080
Speaker 1: make in the morning without makeup, it'd be worse than

515
00:25:10,120 --> 00:25:12,041
Speaker 1: yours on it. You know. It's that kind of stuff.

516
00:25:12,041 --> 00:25:14,480
Speaker 1: My friend would say to me to like comfort me.

517
00:25:15,241 --> 00:25:17,761
Speaker 1: But yeah, like the women would stare at me like,

518
00:25:17,761 --> 00:25:19,001
Speaker 1: oh my god, what the hell is that?

519
00:25:19,961 --> 00:25:22,561
Speaker 2: Because I understand that for I think I heard that

520
00:25:22,961 --> 00:25:25,041
Speaker 2: you actually went into a cafe and they wouldn't save you.

521
00:25:25,921 --> 00:25:29,001
Speaker 1: Yeah, so this is this is very very recent. This

522
00:25:29,080 --> 00:25:31,041
Speaker 1: is what two three months ago when I went into

523
00:25:31,041 --> 00:25:35,481
Speaker 1: oh that recent. Yeah, so my life had a turning point.

524
00:25:35,681 --> 00:25:37,761
Speaker 1: My life had a turning point. So, like I said

525
00:25:37,761 --> 00:25:39,561
Speaker 1: to you, I was working in sales. I was I

526
00:25:39,600 --> 00:25:42,801
Speaker 1: was getting on with it. I'd graduated, got married, got

527
00:25:42,801 --> 00:25:46,360
Speaker 1: my house. My wife had moved to England, and she

528
00:25:46,400 --> 00:25:48,600
Speaker 1: said to me, hey, am it, why don't you create

529
00:25:48,640 --> 00:25:51,561
Speaker 1: some content, Why don't you share your journey? I think

530
00:25:51,961 --> 00:25:54,801
Speaker 1: your attitude towards life of this get on with it

531
00:25:54,840 --> 00:25:56,920
Speaker 1: can help people. And she asked me to make a

532
00:25:56,921 --> 00:25:59,840
Speaker 1: TikTok video and I was like, no, you know, I'm

533
00:25:59,880 --> 00:26:02,400
Speaker 1: too busy, and wives have a way of getting what

534
00:26:02,441 --> 00:26:07,480
Speaker 1: they want. So eventually I create that video and you know,

535
00:26:07,640 --> 00:26:10,361
Speaker 1: I'm so thankful for it now because that video went viral.

536
00:26:10,681 --> 00:26:13,001
Speaker 1: I got over one hundred thousand views on my first

537
00:26:13,001 --> 00:26:16,080
Speaker 1: single video. My TikTok Instagram was growing at like one

538
00:26:16,080 --> 00:26:19,720
Speaker 1: thousand followers per day, but it wasn't really about the followers.

539
00:26:19,761 --> 00:26:21,840
Speaker 1: It was more about the comments and the messages that

540
00:26:21,840 --> 00:26:24,481
Speaker 1: were coming in of people saying I'm it, I'm going

541
00:26:24,521 --> 00:26:27,801
Speaker 1: through the same journey as you, thank you, or asking

542
00:26:27,840 --> 00:26:31,761
Speaker 1: me questions. And I started to create more and more content,

543
00:26:31,801 --> 00:26:35,201
Speaker 1: and I started getting opportunities to go and speak on stage,

544
00:26:35,360 --> 00:26:39,241
Speaker 1: and I got this opportunity from a charity in America

545
00:26:39,961 --> 00:26:43,720
Speaker 1: who invited me over and they said the conferences in

546
00:26:43,761 --> 00:26:46,761
Speaker 1: San Antonio. I didn't know where San Antonio was. I

547
00:26:46,761 --> 00:26:48,561
Speaker 1: had to go and google it. That's you know, this

548
00:26:48,600 --> 00:26:50,920
Speaker 1: is how new OL's doing all this. And they were like,

549
00:26:50,961 --> 00:26:52,281
Speaker 1: we'll bring you and I was like, I can't afford

550
00:26:52,321 --> 00:26:54,121
Speaker 1: the tickets, so I know, we'll bring you over. We'll

551
00:26:54,160 --> 00:26:56,720
Speaker 1: pay for your hotel, we'll pay for your travel, we'll

552
00:26:56,761 --> 00:26:58,041
Speaker 1: give you a bit of money to do this talk

553
00:26:58,041 --> 00:27:00,801
Speaker 1: as well. Went to America and spoke in front of

554
00:27:00,840 --> 00:27:03,241
Speaker 1: two thousand people. It was a charity for my condition

555
00:27:03,801 --> 00:27:06,080
Speaker 1: and it was all these patients for their parents were

556
00:27:06,120 --> 00:27:08,041
Speaker 1: there and I spoke about my journey. I spoke about

557
00:27:08,080 --> 00:27:11,521
Speaker 1: growing up. And I came back to England and spoke

558
00:27:11,521 --> 00:27:13,921
Speaker 1: to my manager and said to my manager, it's been

559
00:27:13,961 --> 00:27:17,080
Speaker 1: so incredible being in this talk and he was like,

560
00:27:17,160 --> 00:27:18,920
Speaker 1: I mean, why don't you go to my daughter school

561
00:27:19,120 --> 00:27:21,480
Speaker 1: and talk about your journey. And then I went to

562
00:27:21,521 --> 00:27:23,801
Speaker 1: his daughter school and I spoke about bullying. I spoke

563
00:27:23,801 --> 00:27:25,840
Speaker 1: about some of the things that happened to me in

564
00:27:25,921 --> 00:27:28,241
Speaker 1: school and how that made me feel, and how we're

565
00:27:28,241 --> 00:27:32,600
Speaker 1: sure be kind and mindful and one thing happened in

566
00:27:32,640 --> 00:27:36,641
Speaker 1: that school that changed everything forever, and that was there

567
00:27:36,681 --> 00:27:40,521
Speaker 1: was a young boy named Vinnie in that session who

568
00:27:40,561 --> 00:27:43,521
Speaker 1: came and took some photographs with me. Two weeks after,

569
00:27:43,561 --> 00:27:46,720
Speaker 1: I got a newsletter sent to me from the school

570
00:27:47,001 --> 00:27:49,961
Speaker 1: and it was a news article from Vinnie. And Vinnie

571
00:27:50,160 --> 00:27:53,001
Speaker 1: was waiting for a heart transplant, and he heard my

572
00:27:53,120 --> 00:27:56,561
Speaker 1: talk and started playing football. When he heard me playing cricket,

573
00:27:56,840 --> 00:27:59,241
Speaker 1: he went and spoke to his mom and the quote

574
00:27:59,281 --> 00:28:01,480
Speaker 1: he said to his mom was I want to be

575
00:28:01,521 --> 00:28:04,760
Speaker 1: a motivational speaker like the man who came to our school.

576
00:28:05,481 --> 00:28:08,441
Speaker 1: I was no motivational speaker at that point. I read that,

577
00:28:08,721 --> 00:28:10,761
Speaker 1: went back to work and said to my manager, thank

578
00:28:10,801 --> 00:28:13,321
Speaker 1: you so much for sending me to your daughter school.

579
00:28:13,521 --> 00:28:16,160
Speaker 1: Here is my notice. I am leaving. I'm going to

580
00:28:16,201 --> 00:28:18,000
Speaker 1: go do this for the rest of my life. I

581
00:28:18,041 --> 00:28:19,680
Speaker 1: did not know how I'm going to make money from this.

582
00:28:19,840 --> 00:28:22,281
Speaker 1: I did not know how I'm going to monetize. We'd

583
00:28:22,321 --> 00:28:24,641
Speaker 1: just moved into our new house with my wife and everything.

584
00:28:24,840 --> 00:28:26,961
Speaker 1: But I just wanted to do it. And I think

585
00:28:27,001 --> 00:28:29,441
Speaker 1: back now, and I think about Simon Sinok and how

586
00:28:29,441 --> 00:28:32,761
Speaker 1: he talks about finding your why. I had found my why.

587
00:28:32,840 --> 00:28:34,840
Speaker 1: This is my why. I want to share my story.

588
00:28:35,041 --> 00:28:36,880
Speaker 1: I want to help people. I want to inspire people.

589
00:28:37,201 --> 00:28:39,841
Speaker 1: And I started speaking at school. I started speaking around

590
00:28:39,881 --> 00:28:43,961
Speaker 1: the world. I started doing learnch and learns, creating podcasts,

591
00:28:44,001 --> 00:28:46,681
Speaker 1: and I started journaling all of this. I started journaling

592
00:28:46,721 --> 00:28:49,361
Speaker 1: all my childhood memories and I turned it into a

593
00:28:49,401 --> 00:28:53,440
Speaker 1: book called Born Different. I sent it to four or

594
00:28:53,481 --> 00:28:57,240
Speaker 1: five publishers, all who rejected it. Now fast forward to

595
00:28:57,241 --> 00:29:01,201
Speaker 1: this coffee incident. I'm in London, I'm with my wife.

596
00:29:01,201 --> 00:29:03,641
Speaker 1: I go for a walk in the afternoon, and I

597
00:29:03,761 --> 00:29:07,641
Speaker 1: go into this coffee shop, predominantly men sitting there staring

598
00:29:07,681 --> 00:29:11,761
Speaker 1: at me as if they've seen a ghost, with no exaggeration.

599
00:29:12,281 --> 00:29:14,480
Speaker 1: And I go over to the desk and I order

600
00:29:14,561 --> 00:29:17,681
Speaker 1: a coffee and a cake. And she looks at me

601
00:29:17,721 --> 00:29:20,321
Speaker 1: and says, oh, we're not serving anymore, and gives me

602
00:29:20,361 --> 00:29:23,881
Speaker 1: a strange look and turns around and walks away. Clearly

603
00:29:23,881 --> 00:29:26,001
Speaker 1: they were serving, because there were a lot of people

604
00:29:26,041 --> 00:29:27,561
Speaker 1: sitting in the shop, and there was a lot of

605
00:29:27,561 --> 00:29:29,121
Speaker 1: people in front of me as well who had just

606
00:29:29,201 --> 00:29:33,641
Speaker 1: ordered a coffee. I was left there, stood thinking what

607
00:29:33,881 --> 00:29:35,761
Speaker 1: just happened. I looked around and people are still giving

608
00:29:35,801 --> 00:29:38,161
Speaker 1: me this look of who are you? What's happened to

609
00:29:38,201 --> 00:29:41,041
Speaker 1: your face? Like I could just read their mind. So

610
00:29:41,081 --> 00:29:43,401
Speaker 1: I walked out and I was really really upset, and

611
00:29:43,441 --> 00:29:46,641
Speaker 1: I thought, you know what, Born Different needs to come

612
00:29:46,681 --> 00:29:51,361
Speaker 1: out to the world. Wow. I created a post about

613
00:29:51,361 --> 00:29:55,121
Speaker 1: how upset I was because I have very good followers,

614
00:29:55,121 --> 00:29:57,601
Speaker 1: and my followers are like my friends. They all all

615
00:29:57,641 --> 00:30:01,161
Speaker 1: support my journey. So I put this post out, talked

616
00:30:01,161 --> 00:30:04,081
Speaker 1: about it. Loads of people sent me comments of reassurance.

617
00:30:04,081 --> 00:30:07,281
Speaker 1: Loads of people DM me, hopefully please tell me you

618
00:30:07,401 --> 00:30:12,001
Speaker 1: named and shamed the cafe. I didn't. I would have

619
00:30:12,081 --> 00:30:16,841
Speaker 1: named and shame that cafe. I spent out official statement

620
00:30:16,921 --> 00:30:19,841
Speaker 1: to them from from a charity that I'm an ambassador of.

621
00:30:20,401 --> 00:30:23,841
Speaker 1: I made a police record of it, but I did

622
00:30:23,881 --> 00:30:27,720
Speaker 1: not name and shame because I just thought the mission

623
00:30:27,801 --> 00:30:30,401
Speaker 1: is bigger than that. The mission is to educate people.

624
00:30:31,001 --> 00:30:33,001
Speaker 1: You know, we already live in this world where there's

625
00:30:33,001 --> 00:30:35,401
Speaker 1: so much turmoil. The last thing I want is for

626
00:30:35,801 --> 00:30:39,761
Speaker 1: my followers, my friends on social media to go there

627
00:30:39,801 --> 00:30:44,161
Speaker 1: and bumpud. Did your wife want to go back in

628
00:30:44,281 --> 00:30:46,281
Speaker 1: and order a coffee and say why you didn't save me?

629
00:30:46,521 --> 00:30:49,200
Speaker 1: Or I came? I came back. She didn't go with

630
00:30:49,201 --> 00:30:52,081
Speaker 1: me when I went to the walk, but when I

631
00:30:52,121 --> 00:30:55,081
Speaker 1: got back home, when I or the hotel, I told

632
00:30:55,121 --> 00:30:58,881
Speaker 1: her what happened, and she was just like, let's do

633
00:30:58,921 --> 00:31:00,561
Speaker 1: something about this, you know. And I was like, I

634
00:31:00,561 --> 00:31:02,041
Speaker 1: don't know what to do, and she's like, let's tell

635
00:31:02,041 --> 00:31:04,041
Speaker 1: the police at least, you know, and the police can

636
00:31:04,041 --> 00:31:05,881
Speaker 1: send a statement out to them because they need to.

637
00:31:05,961 --> 00:31:09,601
Speaker 1: You know, in the Equality Act, you can't discriminate someone

638
00:31:10,201 --> 00:31:11,841
Speaker 1: for the way they look. But they just said they

639
00:31:11,841 --> 00:31:14,481
Speaker 1: weren't solving they were. They were like, we we may

640
00:31:14,521 --> 00:31:16,361
Speaker 1: have been opened, but we stopped serving at a certain

641
00:31:16,401 --> 00:31:18,761
Speaker 1: time and then we closed. That's all it was. But

642
00:31:19,281 --> 00:31:22,641
Speaker 1: looking at their opening and closing times on Google, they

643
00:31:22,641 --> 00:31:24,881
Speaker 1: weren't closing anything. I would have stood there and waited

644
00:31:24,881 --> 00:31:26,721
Speaker 1: for the next customer to come and get his coffee.

645
00:31:26,881 --> 00:31:31,081
Speaker 1: I swear, have you ever, you know, what situations like

646
00:31:31,121 --> 00:31:34,321
Speaker 1: that and everything that you've had in the past, have

647
00:31:34,441 --> 00:31:39,961
Speaker 1: you ever wanted to end your life? Yes, I've never

648
00:31:40,001 --> 00:31:42,401
Speaker 1: been asked that question. I've done lots and lots of

649
00:31:42,401 --> 00:31:46,041
Speaker 1: podcasts and I've never been asked that question. And I've

650
00:31:46,081 --> 00:31:52,241
Speaker 1: always been mindful about how. But there have been especially

651
00:31:52,241 --> 00:31:55,641
Speaker 1: when I face rejection, especially when I face rejection from women,

652
00:31:56,601 --> 00:32:00,961
Speaker 1: like I've been on dating apps a lot, and I

653
00:32:01,001 --> 00:32:05,041
Speaker 1: was very upfront about my condition. And when I would

654
00:32:05,121 --> 00:32:06,841
Speaker 1: and get the response like I put my heart and

655
00:32:06,881 --> 00:32:10,001
Speaker 1: soul into send like someone a message like I'd read

656
00:32:10,001 --> 00:32:11,521
Speaker 1: their profile, I'll be like, yeah, this is I could

657
00:32:11,521 --> 00:32:15,361
Speaker 1: really I'm sorry, you know, and then the replies back

658
00:32:15,401 --> 00:32:18,681
Speaker 1: saying I'm sorry we can't connect. And there was one

659
00:32:18,721 --> 00:32:22,081
Speaker 1: person that I did start speaking to and she said,

660
00:32:22,281 --> 00:32:24,841
Speaker 1: I mean, you're a really nice person, but I can't

661
00:32:25,041 --> 00:32:28,321
Speaker 1: see myself being intimate with you because of your condition.

662
00:32:29,641 --> 00:32:33,361
Speaker 1: And that led me to things like thinking of self harm,

663
00:32:33,361 --> 00:32:37,480
Speaker 1: thinking of is it even worth it? I threw my

664
00:32:37,561 --> 00:32:41,521
Speaker 1: phone again. Of the amount of phones I've broken from

665
00:32:41,561 --> 00:32:45,081
Speaker 1: just getting my frustration out is unbelievable. You know. It

666
00:32:45,161 --> 00:32:47,121
Speaker 1: was one of the ways that I wanted to get out,

667
00:32:48,081 --> 00:32:51,561
Speaker 1: and the coping mechanism was just to break things. So

668
00:32:51,641 --> 00:32:55,881
Speaker 1: what stopped you from doing self haund to you? I

669
00:32:55,881 --> 00:32:59,161
Speaker 1: think family was one of the biggest ones. Like in

670
00:32:59,161 --> 00:33:00,681
Speaker 1: the amount of times you pick something up, you look

671
00:33:00,721 --> 00:33:04,041
Speaker 1: at yourself and then you think, think of my mother.

672
00:33:04,241 --> 00:33:07,440
Speaker 1: You know, I lost my when I was nineteen, Thinking

673
00:33:07,441 --> 00:33:09,321
Speaker 1: of all of that, thinking of my father putting his

674
00:33:09,361 --> 00:33:12,801
Speaker 1: hand on my head and trying to bless me and say, look,

675
00:33:12,801 --> 00:33:15,361
Speaker 1: you know, do well in your life. Go get a degree,

676
00:33:15,401 --> 00:33:18,361
Speaker 1: go go get a good job. I think all of that.

677
00:33:18,761 --> 00:33:21,801
Speaker 1: I do have a very good supporting family around me. Yeah,

678
00:33:21,881 --> 00:33:24,081
Speaker 1: and I think that really really makes a difference. You know,

679
00:33:24,281 --> 00:33:28,720
Speaker 1: my brother, my sister, my even my extended family you

680
00:33:28,721 --> 00:33:31,641
Speaker 1: know as a as an Indian family. You know, everyone's together,

681
00:33:31,681 --> 00:33:34,960
Speaker 1: that uncles, the aunties, cousins, everyone is if it's like

682
00:33:35,001 --> 00:33:37,281
Speaker 1: one big family. And I think that made a big

683
00:33:37,321 --> 00:33:40,121
Speaker 1: difference to me. I remember like if I would have

684
00:33:40,201 --> 00:33:42,281
Speaker 1: a bad day or I would be really upset and

685
00:33:42,321 --> 00:33:44,280
Speaker 1: I'd go to a cousin's house, they would realize very

686
00:33:44,321 --> 00:33:47,001
Speaker 1: quickly from my body language and they'd ask me what's happened.

687
00:33:47,561 --> 00:33:49,881
Speaker 1: And it was those moments that that I think got

688
00:33:49,881 --> 00:33:52,841
Speaker 1: me through it. So when was that?

689
00:33:52,921 --> 00:33:55,521
Speaker 2: Okay, I'm going to ask you this before, but because

690
00:33:55,521 --> 00:33:58,960
Speaker 2: we a it's a topic that you know, even myself

691
00:33:59,361 --> 00:34:02,601
Speaker 2: and as I said, I've not got any condition like

692
00:34:02,761 --> 00:34:05,881
Speaker 2: you've gone through or situation. Well, you know, I've gone

693
00:34:05,921 --> 00:34:08,161
Speaker 2: through some big situations, but I've tried to end my

694
00:34:08,241 --> 00:34:12,241
Speaker 2: life twice. The only race it stopped me is because

695
00:34:12,281 --> 00:34:14,601
Speaker 2: you know, maybe I think about the people I'll hear

696
00:34:14,641 --> 00:34:16,601
Speaker 2: it if I did that, you know what I mean.

697
00:34:17,121 --> 00:34:20,001
Speaker 2: So when was the last time you ever thought of that?

698
00:34:20,601 --> 00:34:22,041
Speaker 2: Was it before you met your wife?

699
00:34:22,761 --> 00:34:25,121
Speaker 1: It was before I met my wife? Yeah? Yeah, So

700
00:34:25,161 --> 00:34:29,921
Speaker 1: she's changed everything. My wife, by hands down, has changed

701
00:34:30,641 --> 00:34:33,601
Speaker 1: my entire I wouldn't be sitting here doing this interview

702
00:34:33,601 --> 00:34:35,721
Speaker 1: with you right now if it wasn't for my wife,

703
00:34:35,761 --> 00:34:38,561
Speaker 1: I'd be doing my nine to five job, not accepting

704
00:34:38,561 --> 00:34:41,321
Speaker 1: the left hand side of my face and just thinking

705
00:34:41,361 --> 00:34:43,561
Speaker 1: will I ever be will I ever get married? And

706
00:34:43,681 --> 00:34:46,201
Speaker 1: having those episodes of thinking of ending it because I

707
00:34:46,441 --> 00:34:49,481
Speaker 1: aren't finding somebody or it's not going anywhere, over and

708
00:34:49,521 --> 00:34:54,081
Speaker 1: over again. So she gave you your confidence back, hands down,

709
00:34:54,201 --> 00:34:56,761
Speaker 1: she gave me my confidence back. I think in my

710
00:34:57,201 --> 00:34:59,761
Speaker 1: initial you know, early early life, it was my father

711
00:34:59,801 --> 00:35:02,921
Speaker 1: and him normalizing my condition and telling me that I

712
00:35:02,921 --> 00:35:06,681
Speaker 1: can do it. And then now my wife. So nothing

713
00:35:07,281 --> 00:35:10,041
Speaker 1: now bothers you about that side of your face anymore.

714
00:35:10,321 --> 00:35:14,281
Speaker 1: You've you've grown to excited. Let me you know, I

715
00:35:14,321 --> 00:35:16,801
Speaker 1: want to be very very realistic with our listeners that

716
00:35:16,921 --> 00:35:19,681
Speaker 1: you know there will be episodes in our lives where

717
00:35:19,721 --> 00:35:23,761
Speaker 1: we feel shit. Why me? Yeah? You know. You know

718
00:35:23,801 --> 00:35:26,481
Speaker 1: there was an incident not too long ago. I was

719
00:35:26,521 --> 00:35:28,921
Speaker 1: just going to get some milk from the shop near

720
00:35:28,961 --> 00:35:31,481
Speaker 1: my house and there's a group of kids standing by

721
00:35:31,481 --> 00:35:34,641
Speaker 1: the roundabout by the shop and they're like, yoh, you'll

722
00:35:34,721 --> 00:35:36,801
Speaker 1: look at that man's space. Man, look at that man's space.

723
00:35:37,241 --> 00:35:40,401
Speaker 1: And another kid goes, yeah, yeah, he's got a TikTok channel. Man,

724
00:35:40,601 --> 00:35:43,801
Speaker 1: his face is mashed up, bro. And I could hear

725
00:35:43,841 --> 00:35:49,321
Speaker 1: them talking about that, and it absolutely hurt me beyond believe.

726
00:35:49,361 --> 00:35:51,801
Speaker 1: I came home and I cried. I cried and cried

727
00:35:51,841 --> 00:35:55,081
Speaker 1: and cried, and I again made a video and told

728
00:35:55,281 --> 00:35:58,961
Speaker 1: my followers about it. And I just want to say

729
00:35:59,001 --> 00:36:01,321
Speaker 1: that we go through the episodes, there will be I'm

730
00:36:01,361 --> 00:36:03,881
Speaker 1: not always confident. I'm not always happy. You know, I'm

731
00:36:03,921 --> 00:36:06,481
Speaker 1: not always the common produce code man who's got these

732
00:36:06,481 --> 00:36:09,721
Speaker 1: four steps to make yourself confident? And nobody ever is.

733
00:36:09,921 --> 00:36:11,761
Speaker 1: And when you're not, that's when you need to go

734
00:36:11,841 --> 00:36:14,721
Speaker 1: back to your personality, your hobbies, your likes, your interests,

735
00:36:15,041 --> 00:36:17,801
Speaker 1: your family, your your wife, your husband, whatever it is

736
00:36:17,801 --> 00:36:20,001
Speaker 1: a comfort see you go back to that. And I

737
00:36:20,001 --> 00:36:22,561
Speaker 1: think now that I have my wife, and I have cricket,

738
00:36:22,601 --> 00:36:25,041
Speaker 1: and I have music. I go back to these things

739
00:36:25,041 --> 00:36:28,121
Speaker 1: when I have those days. But no, I'm a much

740
00:36:28,161 --> 00:36:30,881
Speaker 1: better person and I'm in a much better position I

741
00:36:30,921 --> 00:36:33,561
Speaker 1: am now because of my wife. Like you said, you

742
00:36:33,561 --> 00:36:35,601
Speaker 1: say you love for cricket. Do you go to the

743
00:36:35,641 --> 00:36:37,761
Speaker 1: games a lot to watch it? I do? I do.

744
00:36:37,921 --> 00:36:41,001
Speaker 1: In fact, I was at the game this week, Indian

745
00:36:41,081 --> 00:36:44,281
Speaker 1: versus England. Here in the edge was the stadium. I

746
00:36:44,401 --> 00:36:46,761
Speaker 1: was fortunate enough to be in the hospitality suite, which

747
00:36:46,801 --> 00:36:50,960
Speaker 1: is a completely different experience that that I enjoyed so much.

748
00:36:51,001 --> 00:36:54,961
Speaker 1: But yeah, I do love the game. My ambition and

749
00:36:54,401 --> 00:36:57,241
Speaker 1: my hope and something that in trying to manifest just

750
00:36:57,241 --> 00:37:00,121
Speaker 1: to go and watch a boxing day test in Melbourne

751
00:37:00,961 --> 00:37:03,961
Speaker 1: one one day and I hope that comes true. Maybe

752
00:37:03,961 --> 00:37:08,041
Speaker 1: some listeners in Australia help that dream become a reality.

753
00:37:08,761 --> 00:37:11,801
Speaker 1: So how many people have the same condition as yours?

754
00:37:11,841 --> 00:37:16,561
Speaker 1: It very rare. It's one in three thousand around the world.

755
00:37:16,761 --> 00:37:19,321
Speaker 1: There's organizations in Australia that I work with as well,

756
00:37:19,361 --> 00:37:21,561
Speaker 1: actually who are doing a lot of work to raise

757
00:37:21,601 --> 00:37:25,801
Speaker 1: awareness around this organization in America. So I work with

758
00:37:25,801 --> 00:37:28,921
Speaker 1: a lot of organizations around the world where I share

759
00:37:28,961 --> 00:37:31,521
Speaker 1: my story, share my journey from a patient experience point

760
00:37:31,561 --> 00:37:35,161
Speaker 1: of view to help young children, young adults. And do

761
00:37:35,241 --> 00:37:37,201
Speaker 1: you talk to other people with the same condition too?

762
00:37:37,961 --> 00:37:41,321
Speaker 1: I do, yeah, So I'm an ambassador for various charities

763
00:37:41,841 --> 00:37:45,841
Speaker 1: of patients who have this condition. I very much come

764
00:37:45,841 --> 00:37:48,321
Speaker 1: in from the lived experience point of view, not the

765
00:37:48,361 --> 00:37:52,561
Speaker 1: medical because like medicals, there, the doctors, the clinicians are there.

766
00:37:52,921 --> 00:37:55,441
Speaker 1: What is not there many times is hey, how are

767
00:37:55,481 --> 00:37:59,601
Speaker 1: you how are you doing? Not how's the condition? How

768
00:37:59,641 --> 00:38:02,041
Speaker 1: are you doing? Because the mental health aspect of this

769
00:38:02,081 --> 00:38:04,841
Speaker 1: condition gets ignored, and it has been ignored by conditions

770
00:38:04,801 --> 00:38:08,441
Speaker 1: of ears, not because they're purposely doing it, because they

771
00:38:08,441 --> 00:38:10,321
Speaker 1: didn't realize. I Mean, one of the things that I'm

772
00:38:10,361 --> 00:38:13,041
Speaker 1: really really working on at the moment, and it's really

773
00:38:13,081 --> 00:38:17,401
Speaker 1: important to mention, is that transition between childcare and adult care.

774
00:38:17,761 --> 00:38:20,241
Speaker 1: So when you go from children's hospital to an adult hospital,

775
00:38:20,641 --> 00:38:23,841
Speaker 1: it's a big, big shift. Suddenly you haven't got that

776
00:38:23,881 --> 00:38:26,041
Speaker 1: magic cream on your hand when they're giving an injection.

777
00:38:26,441 --> 00:38:28,961
Speaker 1: Suddenly you haven't got those cartoons on the wall, or

778
00:38:29,161 --> 00:38:31,721
Speaker 1: you know, the nurse isn't being overly kind to you

779
00:38:31,841 --> 00:38:34,161
Speaker 1: and being you know, and you're there and you're in

780
00:38:34,201 --> 00:38:36,561
Speaker 1: this serious environment and you're just sitting there thinking this

781
00:38:36,721 --> 00:38:39,201
Speaker 1: is really scary, and no one's there to tell you

782
00:38:39,241 --> 00:38:41,081
Speaker 1: that it's going to be okay. And I'm trying to

783
00:38:41,081 --> 00:38:44,000
Speaker 1: do some work around around that that transition phase as well.

784
00:38:44,401 --> 00:38:48,201
Speaker 1: So I like, is it only the face that's affected? Yeah,

785
00:38:48,441 --> 00:38:50,401
Speaker 1: it's not any what part of the body going down?

786
00:38:50,681 --> 00:38:54,041
Speaker 1: I have tumors growing all over my body, small tumors

787
00:38:54,561 --> 00:38:57,641
Speaker 1: all over my hand, like this one here, I've got

788
00:38:57,681 --> 00:39:03,361
Speaker 1: lots on my chest. Okay, So I do have tumors growing. Wow,

789
00:39:03,561 --> 00:39:05,361
Speaker 1: So how many how many times would you have to

790
00:39:05,361 --> 00:39:09,641
Speaker 1: go to the hospital for checkups a year? I've had

791
00:39:09,721 --> 00:39:16,281
Speaker 1: twenty five surgeries on my face alone, and each time

792
00:39:16,321 --> 00:39:18,761
Speaker 1: it takes about six weeks to seven weeks to recover.

793
00:39:19,121 --> 00:39:21,081
Speaker 1: And because as on my face, I kind of eat

794
00:39:21,201 --> 00:39:25,041
Speaker 1: during that time, I'm having mashed food. I go and

795
00:39:25,081 --> 00:39:28,961
Speaker 1: see my clinician about twice a year, and if I

796
00:39:29,001 --> 00:39:30,881
Speaker 1: have to in between I do. And on top of that,

797
00:39:31,041 --> 00:39:33,081
Speaker 1: I go and see them for my scholarses as well.

798
00:39:33,441 --> 00:39:36,001
Speaker 1: So I'm in the hospital a lot. And now I

799
00:39:36,041 --> 00:39:39,681
Speaker 1: work in the hospital. So through my work, I've advocacy.

800
00:39:40,081 --> 00:39:44,321
Speaker 1: I now work as a diversity and inclusion advisor to

801
00:39:44,681 --> 00:39:48,121
Speaker 1: a trust in England. Wow, what about the medication for this?

802
00:39:49,881 --> 00:39:52,921
Speaker 1: So there's no cure. There's no cure for an F

803
00:39:53,481 --> 00:39:55,241
Speaker 1: It's one of the things that many of the charities

804
00:39:55,281 --> 00:39:57,361
Speaker 1: and the clinicians and the research and are trying to find.

805
00:39:58,161 --> 00:40:01,761
Speaker 1: It's more mainly pain management that we can take, so

806
00:40:02,001 --> 00:40:04,401
Speaker 1: you know, take some very strong painkillers of renowned and

807
00:40:04,401 --> 00:40:11,201
Speaker 1: tramadol Parasits a regular occurrence for me, like sweets. But yeah,

808
00:40:11,321 --> 00:40:13,321
Speaker 1: it's so it mostly but it mostly gets to you

809
00:40:13,401 --> 00:40:15,481
Speaker 1: in the cold weathers. You feel it more than the cold.

810
00:40:16,041 --> 00:40:17,961
Speaker 1: It's a lot worse than the cold weather, a lot

811
00:40:18,041 --> 00:40:20,601
Speaker 1: lot worse, especially especially the squaliosis as well.

812
00:40:20,881 --> 00:40:23,721
Speaker 2: Yeah, let's talk about some good things. Tell me about

813
00:40:23,761 --> 00:40:26,561
Speaker 2: when the when you got married to your wife. Tell

814
00:40:26,601 --> 00:40:29,440
Speaker 2: me about that. How was that that was? I mean

815
00:40:29,441 --> 00:40:31,521
Speaker 2: that was an incredible experience. When she's from India, I'm

816
00:40:31,521 --> 00:40:35,121
Speaker 2: from England. Her family just did not agree to this

817
00:40:35,601 --> 00:40:40,161
Speaker 2: initially that they were the parents that slipe the photograph

818
00:40:40,241 --> 00:40:43,201
Speaker 2: and they said no, they said, what will what will

819
00:40:43,201 --> 00:40:45,121
Speaker 2: people say? What will the family say? What will the

820
00:40:45,161 --> 00:40:48,521
Speaker 2: community say? You know, they'll say, we've let you marry

821
00:40:48,601 --> 00:40:51,001
Speaker 2: him just because we want you to move to England.

822
00:40:51,601 --> 00:40:54,161
Speaker 2: They're starting to other and on the wedding day, not

823
00:40:54,361 --> 00:40:57,521
Speaker 2: many people came from her family. They said, if this

824
00:40:57,561 --> 00:40:58,881
Speaker 2: is what you want, this is what you want, but

825
00:40:58,961 --> 00:40:59,961
Speaker 2: we don't support it.

826
00:41:00,521 --> 00:41:04,401
Speaker 1: And all Indian girls, well, all girls dream of a big,

827
00:41:04,401 --> 00:41:08,761
Speaker 1: fat wedding. She didn't get that in India. We did

828
00:41:08,801 --> 00:41:11,361
Speaker 1: a big party, reception party here in England for her,

829
00:41:11,361 --> 00:41:16,041
Speaker 1: but she didn't get the wedding that she wanted. Marrying

830
00:41:16,081 --> 00:41:18,921
Speaker 1: her has been the best thing. They accepted it. Now

831
00:41:19,761 --> 00:41:22,480
Speaker 1: they have now they have now, they have now they've

832
00:41:22,521 --> 00:41:26,321
Speaker 1: realized that he's just another human being. And we we

833
00:41:26,521 --> 00:41:29,441
Speaker 1: talk and you know that they're seeing how she's doing well,

834
00:41:29,521 --> 00:41:32,441
Speaker 1: she's happy and at the end of the day that

835
00:41:32,441 --> 00:41:35,960
Speaker 1: that's what matters. They make you in person, they have Yeah.

836
00:41:36,161 --> 00:41:38,601
Speaker 1: So when I was in India, I met my wife

837
00:41:38,681 --> 00:41:42,601
Speaker 1: in person two days before our wedding, and everyone was

838
00:41:42,641 --> 00:41:45,601
Speaker 1: so scared that she's going to see me and reject me.

839
00:41:46,521 --> 00:41:49,881
Speaker 1: And we we met in a in a small restaurant

840
00:41:50,201 --> 00:41:53,321
Speaker 1: and she came and sat opposite me. And it was

841
00:41:53,401 --> 00:41:56,641
Speaker 1: during COVID and it had taken me a lot of

842
00:41:56,801 --> 00:41:59,241
Speaker 1: energy and time to get there because of everything that

843
00:41:59,321 --> 00:42:01,361
Speaker 1: was going on. And I sat in front of her

844
00:42:01,401 --> 00:42:05,921
Speaker 1: and said, so, how does it feel? She was like, yeah,

845
00:42:06,081 --> 00:42:10,201
Speaker 1: it's normal. Normal. You made me travel four thousand miles

846
00:42:10,321 --> 00:42:12,081
Speaker 1: to sit in front of you, and you're saying it's normal.

847
00:42:12,281 --> 00:42:14,361
Speaker 1: Why don't we just go back and I'll just what'sapp?

848
00:42:14,401 --> 00:42:18,961
Speaker 1: You don't want to say? You know, I'm just comfortable

849
00:42:19,001 --> 00:42:21,721
Speaker 1: with you. Just feels like it just feels like, what's

850
00:42:21,721 --> 00:42:24,361
Speaker 1: that call? All right? You know what? Well, this relationship

851
00:42:24,361 --> 00:42:28,081
Speaker 1: on WhatsApp? I'm going No, she's that kind of person.

852
00:42:28,121 --> 00:42:30,161
Speaker 1: She's she's just like, it is what it is, I'm it.

853
00:42:30,201 --> 00:42:33,121
Speaker 1: And when we got married, there's a story the first

854
00:42:33,121 --> 00:42:36,241
Speaker 1: time she really saw the brunt of what I go through.

855
00:42:37,321 --> 00:42:39,801
Speaker 1: We had to go and get her passport verified to

856
00:42:39,841 --> 00:42:41,441
Speaker 1: travel to England. We had to go to a police

857
00:42:41,441 --> 00:42:44,641
Speaker 1: station and I take these documents with us and I

858
00:42:44,681 --> 00:42:46,521
Speaker 1: went to I went to the reception desk and I

859
00:42:46,561 --> 00:42:49,841
Speaker 1: gave the receptionist my my the folder and she looked

860
00:42:49,881 --> 00:42:51,681
Speaker 1: at me and she went, oh, this is not right,

861
00:42:51,721 --> 00:42:53,521
Speaker 1: and she gave it back to me. She didn't tell

862
00:42:53,561 --> 00:42:54,921
Speaker 1: me what was wrong with it, she just gave it

863
00:42:54,961 --> 00:42:56,521
Speaker 1: back to me. And I was frantically trying to work

864
00:42:56,561 --> 00:42:59,641
Speaker 1: out what's wrong. Thankfully, somebody helped me and said, all

865
00:42:59,681 --> 00:43:02,161
Speaker 1: you need is this document photocopy in the stamped So

866
00:43:02,201 --> 00:43:04,761
Speaker 1: I went and did all that, came back. When I

867
00:43:04,761 --> 00:43:06,841
Speaker 1: got to the reception desk, she got up saying, oh

868
00:43:06,841 --> 00:43:10,681
Speaker 1: my god, I'm feeling sick, and she walked off. When

869
00:43:10,681 --> 00:43:13,801
Speaker 1: we were walking off, me and my wife. I asked

870
00:43:13,801 --> 00:43:16,681
Speaker 1: her what happened, and she goes, when you left. The

871
00:43:16,681 --> 00:43:20,001
Speaker 1: receptionist asked me who you were and I said, you're

872
00:43:20,041 --> 00:43:23,161
Speaker 1: my husband and everything, and she said you married that.

873
00:43:24,081 --> 00:43:28,561
Speaker 1: Oh my god, why would you marry that? Not him

874
00:43:28,881 --> 00:43:35,401
Speaker 1: or this person that? Oh, I feel sick and my

875
00:43:35,441 --> 00:43:37,521
Speaker 1: wife she cried when she got home and I said

876
00:43:37,521 --> 00:43:43,201
Speaker 1: to her, PARREI, I experienced this all the time. And

877
00:43:43,441 --> 00:43:45,561
Speaker 1: she we used to go shopping and stuff and the

878
00:43:45,601 --> 00:43:47,401
Speaker 1: would be like women staring at me, and in India

879
00:43:47,441 --> 00:43:49,561
Speaker 1: is very different. Here, it's subtle. In India, they're like

880
00:43:50,121 --> 00:43:52,041
Speaker 1: right next to you, like in your face, staring at you.

881
00:43:52,041 --> 00:43:53,841
Speaker 1: They'll pull out their phone and take pictures of you

882
00:43:53,921 --> 00:43:56,361
Speaker 1: or something. And she used to go up to them

883
00:43:56,401 --> 00:43:59,121
Speaker 1: and like, is there something wrong? Like why are you

884
00:43:59,161 --> 00:44:01,321
Speaker 1: staring at him? You know? She would just be like

885
00:44:01,641 --> 00:44:03,960
Speaker 1: straight up with them. And India is a different beast.

886
00:44:04,001 --> 00:44:06,001
Speaker 1: Every time I land in India, I realized that I

887
00:44:06,041 --> 00:44:09,721
Speaker 1: am disabled because people start taking their phone out and

888
00:44:09,761 --> 00:44:12,081
Speaker 1: taking pictures of me. Even on our wedding day in

889
00:44:12,121 --> 00:44:14,961
Speaker 1: the temple, there was a crowd of people going, a

890
00:44:15,081 --> 00:44:20,561
Speaker 1: freak is getting married? People need to fucking grow up

891
00:44:20,601 --> 00:44:23,121
Speaker 1: and get over shit. Yeah, but to talk about a

892
00:44:23,161 --> 00:44:25,321
Speaker 1: good thing, I mean, once all that happened, the good

893
00:44:25,361 --> 00:44:27,681
Speaker 1: things that came out of it was now who I

894
00:44:27,721 --> 00:44:31,241
Speaker 1: am Now the advocacy journey, I'm on. You know, I've

895
00:44:31,241 --> 00:44:35,041
Speaker 1: become a content creator. I have traveled in the last

896
00:44:35,041 --> 00:44:38,441
Speaker 1: two years, traveled to thirteen different countries in Europe and

897
00:44:38,641 --> 00:44:42,481
Speaker 1: US talking about my condition, my journey and my confidence. Code.

898
00:44:43,161 --> 00:44:46,841
Speaker 1: Launched a book which was rejected by five publishers. Now

899
00:44:46,841 --> 00:44:49,961
Speaker 1: it's best selling in US, best selling in Canada, but

900
00:44:50,041 --> 00:44:52,041
Speaker 1: it was best selling in Australia. How was it rejected?

901
00:44:52,641 --> 00:44:54,441
Speaker 1: They just said, they just said, you're not an author,

902
00:44:54,481 --> 00:44:58,401
Speaker 1: you don't have an agent. We don't you know eight

903
00:44:58,481 --> 00:45:01,801
Speaker 1: grand past eight thousand pound and will publish it for you.

904
00:45:02,201 --> 00:45:04,201
Speaker 1: So then I just went and published on Amazon myself

905
00:45:04,481 --> 00:45:06,681
Speaker 1: and so over one thousand copies of it, and I've

906
00:45:06,721 --> 00:45:11,361
Speaker 1: just started my own podcast channel phenomenally well, you know,

907
00:45:11,361 --> 00:45:14,801
Speaker 1: I've done my first two interviews, and yeah, it is

908
00:45:14,841 --> 00:45:17,041
Speaker 1: such a great place. And when I left my job,

909
00:45:17,521 --> 00:45:19,041
Speaker 1: I didn't know where I'm going to be in two

910
00:45:19,121 --> 00:45:22,281
Speaker 1: years time. It's been two years and I'm in. I'm

911
00:45:22,281 --> 00:45:24,161
Speaker 1: in a very good place. You know, three hundred and

912
00:45:24,201 --> 00:45:27,761
Speaker 1: fifty thousand followers on social media, lots and lots of views,

913
00:45:27,801 --> 00:45:29,521
Speaker 1: lots and lots of love, lots and lots of comments,

914
00:45:29,641 --> 00:45:33,281
Speaker 1: traveling the world, wrote my own book, launching my podcast,

915
00:45:33,401 --> 00:45:36,721
Speaker 1: working in DEI in the NHS. Now, I say, I

916
00:45:36,721 --> 00:45:38,241
Speaker 1: don't know where the next two years are going to be,

917
00:45:38,641 --> 00:45:41,721
Speaker 1: but it's definitely going to be a ride to watch,

918
00:45:42,161 --> 00:45:45,121
Speaker 1: especially with the podcast launching and the book and everything

919
00:45:45,121 --> 00:45:47,401
Speaker 1: else that's going on. You know, you know when you travel,

920
00:45:47,441 --> 00:45:50,161
Speaker 1: do you do you get stopped when you're traveling a lot,

921
00:45:50,561 --> 00:45:54,601
Speaker 1: like going through customs or anything like that. For the passport, Yeah,

922
00:45:54,761 --> 00:45:58,761
Speaker 1: the electronic gates don't work with me very well. The

923
00:45:58,761 --> 00:46:02,121
Speaker 1: electronic gates don't recognize my face, so that those those

924
00:46:02,201 --> 00:46:05,721
Speaker 1: face recognition cameras they recognize my face, and that's always

925
00:46:05,761 --> 00:46:08,001
Speaker 1: very very embarrassing. You know, you're standing in a queue

926
00:46:08,001 --> 00:46:11,041
Speaker 1: in immigration and you go into the booths where scan

927
00:46:11,201 --> 00:46:14,241
Speaker 1: your face and it makes the magnets pick up on

928
00:46:14,281 --> 00:46:15,321
Speaker 1: the electronics.

929
00:46:15,481 --> 00:46:20,361
Speaker 3: When you go from they don't but the face recognition,

930
00:46:20,721 --> 00:46:23,081
Speaker 3: and a lot of countries have this face recognition now,

931
00:46:24,041 --> 00:46:27,041
Speaker 3: and every time, every time I approach one, I'm really

932
00:46:27,121 --> 00:46:30,081
Speaker 3: really nervous that the whole queue behind me is going

933
00:46:30,121 --> 00:46:32,481
Speaker 3: to now look at me and realize it's not working.

934
00:46:34,921 --> 00:46:42,561
Speaker 1: What's what's your biggest regret? My biggest regret, Well, I

935
00:46:42,561 --> 00:46:45,281
Speaker 1: think you're not starting my advocacy sooner. You know. I

936
00:46:46,001 --> 00:46:48,521
Speaker 1: wish I'd started doing what I'm doing now a lot

937
00:46:48,601 --> 00:46:51,881
Speaker 1: sooner than I have. I hid myself for too too long,

938
00:46:52,441 --> 00:46:55,161
Speaker 1: but too too long. My social media was just my

939
00:46:55,241 --> 00:46:57,401
Speaker 1: left hand side of my face, but too too long.

940
00:46:57,441 --> 00:47:01,561
Speaker 1: I did not accept my neurified rom toosis. Now I

941
00:47:01,601 --> 00:47:03,921
Speaker 1: say this is me, this is who I am. I

942
00:47:03,921 --> 00:47:06,721
Speaker 1: wish i'd said that. Lots through that and what would

943
00:47:06,761 --> 00:47:13,401
Speaker 1: you say? How would you describe yourself in one word? Yeah? Strong?

944
00:47:14,281 --> 00:47:16,921
Speaker 1: I think I'm definitely strong because it takes a lot,

945
00:47:17,361 --> 00:47:19,041
Speaker 1: But it takes a lot to go through what I

946
00:47:19,081 --> 00:47:22,521
Speaker 1: go through on a on a daily basis. But but

947
00:47:22,601 --> 00:47:24,401
Speaker 1: I get through it. I get through it with the

948
00:47:24,441 --> 00:47:27,201
Speaker 1: belief that it's going to be okay. Well, you know what,

949
00:47:27,281 --> 00:47:30,921
Speaker 1: I've really appreciated you coming on and sharing your amazing

950
00:47:31,041 --> 00:47:33,761
Speaker 1: journey with me, and I would love to stay in

951
00:47:33,801 --> 00:47:35,921
Speaker 1: touch at you in the future to see how you're

952
00:47:35,921 --> 00:47:38,881
Speaker 1: going on and thank you. But I I you know what,

953
00:47:38,961 --> 00:47:41,761
Speaker 1: I I take my hat off to you, mate, because

954
00:47:41,921 --> 00:47:45,641
Speaker 1: you are a survivor and you are strong. Thank you

955
00:47:45,681 --> 00:47:47,841
Speaker 1: so much. Thank you. That means a lot. But I

956
00:47:47,921 --> 00:47:50,041
Speaker 1: really appreciate you coming on mate, and a good look

957
00:47:50,041 --> 00:47:52,521
Speaker 1: in the future with you and your wife. Thank you

958
00:47:52,561 --> 00:47:52,960
Speaker 1: so much.