August 3, 2025 • 48 mins
In this powerful and deeply personal episode, Amit Ghose shares his incredible journey of living with neurofibromatosis—a rare genetic condition that causes tumors to grow on nerves. From childhood bullying and painful surgeries to finding love and purpose, Amit opens up about the physical and emotional challenges he's faced and how he turned adversity into advocacy. His story is one of resilience, heartbreak, transformation and hope.
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Speaker 1 (00:05):
Apoche production. Welcome to Secrets of the Underworld. I am
Neil the muscle comments, and in this.
Speaker 2 (00:15):
Episode, I speak with Amit Ghosh, who shares his journey
living with a rare condition and how he turned pain
into purpose.
Speaker 1 (00:22):
And I realized other children didn't want to sit next
to me. They would hide behind their parents and point
out my face and say, mummy, mummy, what happened to
that boy's face. A kid pointed at me and said, hey,
you don't need a Halloween mask. You've got a permanent
Halloween mask on your face. Twenty five years on from now,
I still think of that comment. I did not accept
the left hand side of my face. I hid it.
(00:44):
But on the third occasions he said to me, I'm it.
If I marry you, I'm not going to marry half
of your face. I know exactly what you're doing. Stop
stop hiding yourself and own it. Thank you for coming on.
Speaker 2 (00:58):
When I read your story and seeing an article on you,
I actually was very intrigued by this because I'd never
seen a story like this ever, so I, you know,
definitely wanted you to come on the podcast, and I
was grateful that you've found the time to come on,
So thank you for coming on by podcast. I just
want to say that before we get into everything else
(01:20):
about your life and what you had gone through, just
tell me about you know, you growing up and the
difficulties of growing up.
Speaker 1 (01:27):
So I was born with this rare genetic condition called neurofibromatosis.
It's a condition that causes tumors to grow on nerves.
So when I was about two years old, they realized
that there's some bumps that are appearing on the left
hand side of my face. They thought I might have
tripped or fold or something. But when we went to doctors,
(01:47):
it very quickly sort of realized that this was a
condition called neurofibromatosis. Condition no one had heard of in
my family. We didn't know how to really respond and
deal with it. I mean I was two years old,
so it was it was my family that were going
through that initial stage of really making sense of it.
(02:07):
For me, I think I realized things in early sort
of lower school, so primary school in UK, when I
was in year four, year five, maybe when I was
about five or six years old going into school, when
I realized other children didn't want to sit next to me,
other children didn't really want to be my friend. That's
(02:29):
what I really realized. There's something different, and at that
age you don't really realize what depression or anxiety is.
But looking back now, I know I was going through
those emotions because I didn't want to go to school.
I didn't want to be in front of other children
because they would hide behind their parents and point out
my face and say, mummy, mummy, what happened to that
(02:51):
boy's face? Wow? It was really challenging at that time.
It was really really challenging. Whether he's just helpful back
then to an extent, yes, But like I always use
an example of pe lessons, So whenever we go in
to pee lessons, you'd go into the p hall and
everyone would come over and the teacher would say, hey,
(03:11):
go pair up with somebody, and then everyone would run
to their athletic person or their friends. And I would
stand there waiting for someone to pair up with me. Wow,
and nobody would want to do that because they were scared,
they were curious, and at that point the teacher would
either pair up with me himself or he would nominate somebody.
So there was only much that teachers could do. I mean,
(03:34):
there was an incident where I got called a name.
A bit later on in my life, when I had surgery,
I got called They were talking about Halloween masks. Children
were talking about buying Halloween masks, and a kid pointed
at me and said, Hey, you don't need a Halloween mask.
You've got a permanent Halloween mask on your face. Now,
that comment really really upset me. In twenty five years
(03:55):
on from now, I still think of that comment and
it upsets me. But when I told the teachers and
the teachers called those boys into a room, all that
those boys said was I was only a bit of Bantermiss.
We were only joking around. So you know, as young children,
you know, we don't know at that age, don't We
just don't know what's a joke or a laugh at
(04:16):
that time. Is something that was at least for me,
a lifelong scars And I still remember today and say
that you are two years old, that you kind of
found out about the disease that you had, Well, what
about prior to that, when you were born? Did the
doctors know anything then or they didn't know. I was
born in a small town in India, and now we
(04:38):
know that. You know, when a child has neurofibromatosa's. There
are some signals there. There are these small spots that
will appear in the body. In the town I was born,
and it was a very small town in India. They
didn't know that. And now we will look out for
it because we know. And nobody in my family had
this condition, so we didn't know to look out for it.
These spots just looked like freckles on the skin. Wow,
but no, we didn't know until the age of two.
(05:00):
Nobody really How did your parents deal with this? My
dad used to live in England. My dad living in
the time when I was born, he had a restaurant here.
His ambition, I'm the last born of four children. From
the youngest, his ambition was that he would move back
to India after I was born. You know, whatever he
is done, he would close up shop and then moved
(05:20):
to India. And this is in the late eighties early nineties.
And when I was born with this condition, they realized
I have this condition. My dad made that brave decision
of saying to his family that were moving to England
and some of my siblings were in school in high school.
They had to uproot their entire life and move to England.
So it was a real, real challenge for them. But
(05:42):
I think my dad played a big role. My mother
to make that move from India to England restart her
life here in a small home, sharing it with my
uncle at that time, it was really really difficult for them,
really really difficult. But like I said, my dad played
a big role in normalizing my condition. Cricket was a
(06:03):
big hobby for me as a young child. I used
to love playing cricket, but I always used to be
scared to play cricket with other children. And my dad
bought me a bat and a ball and I remember
my uncle saying to my dad saying, what are the
ball hits his face, you know, and you know, ruins
it even more. And my dad said, my boy wants
to play cricket. He wants to play cricket. And is
(06:24):
that normalization that helped shape who I am today? How
many brothers and sisters do you have? So I've got
one brother, two sisters, Okay, so how did they take it?
When did they realize that there was something wrong with
the younger brother? I think, you know, obviously, when when
I was diagnosed, everyone had this shock that there's something
wrong here. They didn't want to move to England. You know,
(06:46):
they were in school, they had their friends, their life.
For them, it was a challenge. They're grateful to me
now because I think their life got enhanced by moving
between England and having the education and everything the infrastructure
around them that they had. At that time. There was
remorse that they They talked to me quite openly about
(07:09):
it now and say that, you know, they weren't very
happy with me, you know, lashed born and suddenly now
because of me, they're having to leave all their friends
and their dreams, their their moments behind and moved to
a country which was cold, cloudy, snowy and miserable. That's
that's how they described it at that time. But didn't
(07:30):
they see that, you know, they had to do it
because of your condition, you know what I mean that
they didn't realize that. I mean they were young. They
were young, so I mean, you know one of them
was what five six years old, the other one was
like nine. They just wanted to have fun, but the
days but okay, they were that yeah, they were that age.
So were they the same as your school kids? A
(07:50):
bit weary with playing with you or playing with you.
I'm not playing with my brother because of this condition
or were they okay with you? They were okay with it.
They were okay with it because they they grew into
knowing about it. Yeah, it wasn't. It wasn't like they
wanted to avoid me. My brother is a big was
with a big protector of me, and we used to
play cricket together and everything. It was just that move
were with their friends. It's like, you know, you tell
(08:12):
a high school kid that we're moving now because that
has got a new job and he's got to leave.
It's one of those things and you've got your friends,
You've got the little candy shop that you opened in
school and you're selling pop. My brother used to like
do that. You'd nag my mother to buy him a
piano because he's he likes his piano that I've seen.
He'd play with it for two weeks and then he'd
go and sell it in school. So you know, it
(08:35):
was that kind of thing lifestyle he had. Yeah, and
my sister and everyone had, and that suddenly it was
all up rooted going back to school.
Speaker 2 (08:43):
Like because I understand the way that there was a
lot like when I was in England, and I grew
up like I came out here when I was eighteen,
So I understand that the way the banter was and
the and the bullying was in school because back then,
you know, believe it or that, I used to get
called the N word because I was the only kid
who went overseas came back with a town and they
(09:05):
didn't understand that, and they didn't understand how a white
kid can go overseas come back a different color, and
I would get called the N word and they wouldn't
talk to me for weeks.
Speaker 1 (09:15):
And these are of my best friends. So I know,
I understand the banster that was going on back in
them days. But what I'm trying to get with it
how bad was the condition then when you were growing
up in primary school before you went into secondary school. Oh,
it was really bad. So as a part of the condition,
it can grow quite quickly, quite rapidly. So for the listeners,
(09:37):
the left hand side of my face is completely affected
by this. It's very slow and it's very big. I
wear an artificial eye. Now what you're seeing we know
as an artificial eye. When I was in year seven,
so when I was eleven years old, the eyelid had
grown so so bad that the doctors described it as
the brain would push the eye out if they don't intervene.
(09:59):
And there's there's images and pictures on my on my
social media. I've looked before, and I had my eye
removed in year seven. So in year seven I had
this life changing, eighteen hour surgery. Eleven year old kid
having this live changing surgery and I removed. So I've
got this confidence code that I talk about. It's the
(10:20):
four steps of confidence. Step one is embracing our personality.
So in year six I had a shift. I told
her that I liked cricket and it could never play
with other kids, but one day I asked him if
I can play, and reluctantly they handed me the ball.
I still remember the batsman was holding it with one hand, going, oh,
what's this kid going to do? But little did they
know that I was bowling in my garden for the
last few years. So I came in bowling and I
(10:41):
bowled really well, and I hit the bin. So not
the stunt, the bin because you're standing the bin. And
I hit the bin and I get him out, and
suddenly I go from the boy who's got a funny
face to the boy who plays cricket. Yes, But then
I go into year seven and I have this surgery
and I'm back down. And for a very very long time, Neil,
I did not accept the left hand side of my face.
(11:03):
I just didn't I hit it, the photographs I took,
the places I sat, I just didn't want to show
the world the left comes out of my face. So
did you have times when you didn't want to go
to school or you didn't want to go out the house.
Almost every single day, every single day, I did not
want to go to school because I knew, you know,
because I can't see from the left hand side of
my face. I used to have other kids who would
(11:25):
sit on the left hand side of my face and
do like rude gestures, and then the whole classroom would
start laughing, and I wouldn't know why they're laughing, and
then suddenly I'd look and then as somebody just put
their finger up at me, and it was just funny.
And you know, even some of my friends who were
my friends people who they would laugh as well, because
it's a collective thing. Everyone's just thinking it's funny. And
(11:47):
the teachers back then didn't help at all. Even in
secondary school, they tried to make it stop, like you know,
they'd tell the kids to stop it, they'd have a word,
But no, I think you know what really should have happened.
And the reason why I do what I do today
is you should have speakers coming in and speaking about
visible debut. Now what I do is I go into schools,
(12:09):
like I said, and I talk about my condition and
I talk about my experiences in school. And one of
the reasons I do it is because if someone had
done that to me when I was in school, and
a speaker came in and spoke about their journey and
how they it would have made a big difference to class.
The teachers a saying hey, stop at kids, don't do this,
it's not nice. Yeah, doesn't have that impact. Yeah, correct. Correct?
Speaker 2 (12:30):
When did you actually get the eye patch? Prom How
old were you then.
Speaker 1 (12:34):
Charles eleven years old when I was made eyepatch. I
had to wear an eyepatch for about a year before
the face healed, and then they started making this prestigiously.
Speaker 2 (12:44):
So tell me when you went in for the surgery, Like,
because you're only like ten or eleven years old, you're
going in for this major surgery.
Speaker 1 (12:51):
What is going through your head? You know what I mean?
Speaker 2 (12:54):
As an eleven year old kid, did you even know
what you're going to get into for this?
Speaker 1 (12:58):
I didn't know what was going into. What I knew
is I'm going to have and it have an artificial eye. Yeah,
both of my eyes will look better. And I was
just excited about that prospect. But now I hear stories
from my mum about my late father locking himself up
in a room crying after signing the consent form, coming
(13:19):
home and saying, I don't know what I've just done.
You know what if we lose our son. It was
my mother and my father who really went through the
turmoil of or not me. What was the recovery like
after this? As eleven year old kid, I was in
hospital for about six seven weeks. I had like braces
on my brain because the way they did this was
(13:41):
to cut my skull and take the eye out from
the back of the skull. And I'm still very close
to the consultant and the doctors who were involved in
that surgery, and they when they tell me what it involved,
it's it's very scary.
Speaker 2 (13:58):
Wow, now you're older with this and you can and
you look back at what you've been through. I personally,
I don't know how you go through because I've not
been through anything as difficult as that. But I know
what it's like to lose friends and not have friends, because,
as I said, when you're a kid, even up to
age of fourteen, and you don't have friends or because
of some stupid banter, it's lonely, you know what I mean.
(14:20):
And to come home from school knowing that you haven't
got a friend, and then you're you're at home, you
see and everyone else play in the park and you
can't go over to play with them.
Speaker 1 (14:30):
What was going for your head? Like?
Speaker 2 (14:32):
Are you just a loner in the house or you
are you going out and just doing your own thing?
Speaker 1 (14:37):
What was because you said you didn't like to go
out too because of the way you looked. I was
a loner. I was aloner. And that was one of
the names I used to get called. From the many
names I used to get called, loner was one of them.
I used to sit in the corner of classrooms really
really upset. I used to sit in my bedroom a
lot and draw on my wall in my bedroom, or
(14:59):
you know, write or play play Feefa on the laptop
for like what made you happy back then? What was
making you happy? And to stay from going insane. Cricket
was a big thing, playing cricket. I was to come
home and play cricket. I remember a coach saw me
playing on the street and asked my dad if I
(15:20):
could go and play in the club. So cricket made
me really happy. Music, so percussion instruments. I used to
love playing Indian percussion instruments that were bigger than me.
So I'd go into a wedding and I'd pick up
a drum and I'd start playing it because I was
so conscious that people are staring at me. If I
pick up a drum, people, I can focus in the drum,
and I think that people are going to focus in
(15:40):
the drum. So that those were the things that that
was like my escape. Really how was it going to
family functions like a wedding? How was that really hard?
Really really hard? Because like Indian weddings in itself are
so like massavish, flamboyant, you know. And I remember a
story this is this is about about six five or
(16:03):
six years ago, just for married. In fact, I was
going to my friend's wedding and Auntie G and an
anti G in our culture is known as the one
that just goes around and gossips all the time. So
she came over to me and she said are you
Are you upset? And I was like, why would I
be upset? She's like, no, we heard that your family
is trying to get you an arranged marriage and it's
(16:23):
not really working out. Are you upset? And by the way,
arrange marriages and our culture are like real life tender
photographs are exchange versus swiping is a parent, so my
photos were always rejected by parents. So she said, oh,
I heard you know your your family's trying to get
you in arrange marriage, but it's not really working out.
(16:45):
And then she tried to comfort me, and she tried
to comfort me by saying, don't worry. If you had
a daughter, would you want your daughter to marry someone
that looks like you? And that was meant to be
comforting and and you knoww disability no disability. We when
we go into weddings or when we go into a
new environment, we are conscious about ourselves. We do feel
(17:07):
in school and we are always thinking if someone looking
at me is someone judging me. For me, that was
just multiplied by one hundred. So I would just sit
there playing on my phone, looking down, not making eye
contact with anybody, and then slowly I would just go
and speak to somebody I know really well or something
like that, or stand in the corner somewhere. Family events
are really really hard. Did things get better as you
(17:30):
got older with people in school? Did they come to
terms of it or did you think it got harder?
Things got better in college definitely, because I learned this
thing of embracing who you are, like be like, you know,
embracing my personality. Although I didn't accept the left hand
side of my face. I so you're you're still not
(17:50):
accepting it. No, no, no, I didn't learn to accept
the left hand side of my face until I met
my wife. Wow, that's the story which I'll come on to.
But college was a little bit better because I started
to make friends just by talking about ball, cricket, things
like that. But still I used to sit in a
certain part of the room. When I would stand with
(18:11):
my friends, I would stand on the right hand side,
so they've seen this side of the right side of
my face. But yeah, I did not learn to accept it.
And what happened was after that Auntie g experience about
a year. Year and a half after that, I started
speaking to a wonderful woman in India. My friend introduced
us because my family were looking to get me an
(18:33):
arranged marriage. And my friend was like, hey, we speak
to this girl. I think she should. You and her
would really get on. And he knew her and he
went and spoke to her and she said no. First
she said, please don't give my number to this man.
I don't want to move to England. I don't want
to get married. I'm too busy. She was a makeup
artist by profession. And he came and told me and
he was like, she said no, but message her anyway.
(18:54):
I'm like no. It was like, no, do it? Trust
me to send her a message. One of my sisters
has now moved back to India and my wife now
she used to in the next road next to her.
She goes, look there's some commonality there. Just message And
I was like, so I sent her a message and
I said, hey, my friend gave me a number. How
are you doing ukay? And she did reply for about
(19:16):
two three hours and I was like, woh, my done
this is just such a bad idea. But then she
replied back. She replied back saying, hey, I know. He said,
how are you you okay? And then we started messaging
and I was talking about my sister living near her,
and there was some commonality and we started messaging and
there was a click. There was a click, and we
can continued messaging and I said to her, I like eating.
(19:37):
She said, I like cooking. I was like, this is great.
We weren't made for each other. And we had all
these answer and I used to video call her a lot,
and I used to video call her and I used
to cover the left hand side of my face and
show her the right hand side, and she let it
go once or twice. But on the third occasion she
said to me, I'm it if I marry you, I'm
not going to marry half of your face. I know
(19:58):
exactly what you're doing. Stop stop hiding yourself and own it.
And it was at that point that I learned to
do big things. One that she's the one for me
because you know, actually accepts me. But two, I need
to learn to accept who I am before others can
accept me. And now when I go and speak at schools,
and colleges I very much talk about this point that
(20:20):
we live in this world now where we're all constantly
seeking validation externally. We want to be liked by others.
We want to post a video and social media and
get more likes than our friends. We want to we
like by our teachers, like by our friends, our parents.
But we don't spend enough time in liking ourselves. We
don't spend enough time in giving ourselves validation. And I
(20:44):
ask this really funny question in colleges all the time,
and it gets things giggling, but thinking, I say, would
you go on a date with yourself? And then they
think about it, and I'm like, well, if you're not
going to spend two hours with yourself, what makes you
think someone else is going to spend that time with you?
And the same can apply for a job interview in
a professional world. If you're not going to back yourself,
(21:06):
why would someone else back you? That's correct, well said,
that was actually I was coming up to what you
just said then, because of how did you go trying
to find your first job? I worked in call centers
for a very long time. Was that by choice? Because
you didn't want to go into the workplace. When I
think back now, it was I didn't probably accept it
(21:26):
at the time, but I didn't. You know, A lot
of my friends went to work in like retail shops
and things like that, and I went straight into a
call center, which is why I made a career out
of sales and marketing and the end of it. But yeah,
I went and worked in call centers. And I remember
the very first job that I did, going into work,
going into training, apparently everyone was informed that there's going
(21:49):
to be a man starting who has a visible difference.
Everyone be kind, everyone be nice, And I found that
a little bit strange thinking about it now. Keep been
through some point. Was there any pain in this, like
physical pain or not? The condition has a lot of pain.
The condition comes with scoliosis, which is a curvature of
(22:12):
the spine. So my spine is curved. So my love
of cricket was very short lived because as I got older,
I could no longer bowl. I was a leg spinner,
and as I got older, I could no longer bowl
because of my because of my spine, I had a
really really long surgery on my spine and after this
I constantly have neck pain because of it. I constantly
(22:35):
during the cold, and my face gets very sore and
very painful. Inside of my mouth, the tumor grows there
as well, and sometimes I bite into it and then
it starts bleeding. So you can imagine you're sitting in
a dinner with some friends and suddenly you bit into
the tumor and you're spitting blood. And it's horrible, isn't it?
And can they not remove that? Can they not remove it? Still?
(22:56):
They can, they can, They can remove it, But the
tendency of the condition is it will always grow back.
And when you play with it, when you when you
temper it, it grows back with more force.
Speaker 2 (23:08):
So going back to when you're the eyepatch and the
eye patch you've got, now, how how regularly do you
have to change that from better? Like, because it's had
an adult one that's an adult size, so so how
so you would have changed it every time you went
from a different age.
Speaker 1 (23:21):
I changed it about once year because our skin tone,
our color, we get wrinkles, we get older, unfortunately, so yeah,
every year they give me a new one.
Speaker 2 (23:31):
Wow, And it's not that's not painful or anyway or
it's not like.
Speaker 1 (23:38):
Wow, your viewers will see this, but it literally just
comes out like dentures, like you know, how you take
and then it just literally clips back on with magnets,
so it's it's magnetic to go back on. Wow. But
it's not. It's not like itchy in any way or discomfort.
It is very uncomfortable. I've just become very comfortable at
(23:58):
work now actually, so if we're in a meeting with
with our direct colleagues, I'll take it off in the
media because you know, it gets really wet and sweaty
and uncomfortable. Well, so when when you shower, you'd have
to take that off or you keep it on. Yeah,
a shower, I take it off. When I'm at home,
I leave it off. A lot of times when I
go to sleep, I leave it off. Jesus Christ. So
(24:21):
I want to ask you about you. You said that
when you got older it kind of didn't get us worse,
It got kind of better. But I actually thought it
would have got worse because the fact that when you're
you know, I don't know if you did ever go
into a pub when you were in college or like that,
and people on the alcohol I know what they're like
in fucking England that they get rowdy, get on a
few pints, and then they'll they'll pick someone out in
(24:41):
the pub that they want to fucking have banter with.
Oh yeah, so no, let me let me. It got
better in terms of my friends direct friend circle. They
became more supportive and they would do banter with me
just like they do banter with their friends. Yeah. What
wasn't good was going into pubs, going into cafes and
my friends were like, I want to go knock that
guy out right now. I want to go punch me
(25:02):
in his face. And I'm like why, it's like staring
at you r a gold stare up me. It is
like I bet if you saw her face in the
make in the morning without makeup, it'd be worse than
yours on it. You know. It's that kind of stuff.
My friend would say to me to like comfort me.
But yeah, like the women would stare at me like,
oh my god, what the hell is that?
Speaker 2 (25:19):
Because I understand that for I think I heard that
you actually went into a cafe and they wouldn't save you.
Speaker 1 (25:25):
Yeah, so this is this is very very recent. This
is what two three months ago when I went into
oh that recent. Yeah, so my life had a turning point.
My life had a turning point. So, like I said
to you, I was working in sales. I was I
was getting on with it. I'd graduated, got married, got
my house. My wife had moved to England, and she
(25:46):
said to me, hey, am it, why don't you create
some content, Why don't you share your journey? I think
your attitude towards life of this get on with it
can help people. And she asked me to make a
TikTok video and I was like, no, you know, I'm
too busy, and wives have a way of getting what
they want. So eventually I create that video and you know,
(26:07):
I'm so thankful for it now because that video went viral.
I got over one hundred thousand views on my first
single video. My TikTok Instagram was growing at like one
thousand followers per day, but it wasn't really about the followers.
It was more about the comments and the messages that
were coming in of people saying I'm it, I'm going
through the same journey as you, thank you, or asking
(26:27):
me questions. And I started to create more and more content,
and I started getting opportunities to go and speak on stage,
and I got this opportunity from a charity in America
who invited me over and they said the conferences in
San Antonio. I didn't know where San Antonio was. I
had to go and google it. That's you know, this
(26:48):
is how new OL's doing all this. And they were like,
we'll bring you and I was like, I can't afford
the tickets, so I know, we'll bring you over. We'll
pay for your hotel, we'll pay for your travel, we'll
give you a bit of money to do this talk
as well. Went to America and spoke in front of
two thousand people. It was a charity for my condition
and it was all these patients for their parents were
there and I spoke about my journey. I spoke about
growing up. And I came back to England and spoke
(27:11):
to my manager and said to my manager, it's been
so incredible being in this talk and he was like,
I mean, why don't you go to my daughter school
and talk about your journey. And then I went to
his daughter school and I spoke about bullying. I spoke
about some of the things that happened to me in
school and how that made me feel, and how we're
sure be kind and mindful and one thing happened in
(27:32):
that school that changed everything forever, and that was there
was a young boy named Vinnie in that session who
came and took some photographs with me. Two weeks after,
I got a newsletter sent to me from the school
and it was a news article from Vinnie. And Vinnie
was waiting for a heart transplant, and he heard my
(27:53):
talk and started playing football. When he heard me playing cricket,
he went and spoke to his mom and the quote
he said to his mom was I want to be
a motivational speaker like the man who came to our school.
I was no motivational speaker at that point. I read that,
went back to work and said to my manager, thank
you so much for sending me to your daughter school.
(28:13):
Here is my notice. I am leaving. I'm going to
go do this for the rest of my life. I
did not know how I'm going to make money from this.
I did not know how I'm going to monetize. We'd
just moved into our new house with my wife and everything.
But I just wanted to do it. And I think
back now, and I think about Simon Sinok and how
he talks about finding your why. I had found my why.
This is my why. I want to share my story.
(28:35):
I want to help people. I want to inspire people.
And I started speaking at school. I started speaking around
the world. I started doing learnch and learns, creating podcasts,
and I started journaling all of this. I started journaling
all my childhood memories and I turned it into a
book called Born Different. I sent it to four or
five publishers, all who rejected it. Now fast forward to
(28:57):
this coffee incident. I'm in London, I'm with my wife.
I go for a walk in the afternoon, and I
go into this coffee shop, predominantly men sitting there staring
at me as if they've seen a ghost, with no exaggeration.
And I go over to the desk and I order
a coffee and a cake. And she looks at me
(29:17):
and says, oh, we're not serving anymore, and gives me
a strange look and turns around and walks away. Clearly
they were serving, because there were a lot of people
sitting in the shop, and there was a lot of
people in front of me as well who had just
ordered a coffee. I was left there, stood thinking what
just happened. I looked around and people are still giving
me this look of who are you? What's happened to
(29:38):
your face? Like I could just read their mind. So
I walked out and I was really really upset, and
I thought, you know what, Born Different needs to come
out to the world. Wow. I created a post about
how upset I was because I have very good followers,
and my followers are like my friends. They all all
support my journey. So I put this post out, talked
(30:01):
about it. Loads of people sent me comments of reassurance.
Loads of people DM me, hopefully please tell me you
named and shamed the cafe. I didn't. I would have
named and shame that cafe. I spent out official statement
to them from from a charity that I'm an ambassador of.
I made a police record of it, but I did
(30:23):
not name and shame because I just thought the mission
is bigger than that. The mission is to educate people.
You know, we already live in this world where there's
so much turmoil. The last thing I want is for
my followers, my friends on social media to go there
and bumpud. Did your wife want to go back in
(30:44):
and order a coffee and say why you didn't save me?
Or I came? I came back. She didn't go with
me when I went to the walk, but when I
got back home, when I or the hotel, I told
her what happened, and she was just like, let's do
something about this, you know. And I was like, I
don't know what to do, and she's like, let's tell
the police at least, you know, and the police can
send a statement out to them because they need to.
(31:05):
You know, in the Equality Act, you can't discriminate someone
for the way they look. But they just said they
weren't solving they were. They were like, we we may
have been opened, but we stopped serving at a certain
time and then we closed. That's all it was. But
looking at their opening and closing times on Google, they
weren't closing anything. I would have stood there and waited
for the next customer to come and get his coffee.
(31:26):
I swear, have you ever, you know, what situations like
that and everything that you've had in the past, have
you ever wanted to end your life? Yes, I've never
been asked that question. I've done lots and lots of
podcasts and I've never been asked that question. And I've
always been mindful about how. But there have been especially
(31:52):
when I face rejection, especially when I face rejection from women,
like I've been on dating apps a lot, and I
was very upfront about my condition. And when I would
and get the response like I put my heart and
soul into send like someone a message like I'd read
their profile, I'll be like, yeah, this is I could
really I'm sorry, you know, and then the replies back
(32:15):
saying I'm sorry we can't connect. And there was one
person that I did start speaking to and she said,
I mean, you're a really nice person, but I can't
see myself being intimate with you because of your condition.
And that led me to things like thinking of self harm,
thinking of is it even worth it? I threw my
(32:37):
phone again. Of the amount of phones I've broken from
just getting my frustration out is unbelievable. You know. It
was one of the ways that I wanted to get out,
and the coping mechanism was just to break things. So
what stopped you from doing self haund to you? I
think family was one of the biggest ones. Like in
(32:59):
the amount of times you pick something up, you look
at yourself and then you think, think of my mother.
You know, I lost my when I was nineteen, Thinking
of all of that, thinking of my father putting his
hand on my head and trying to bless me and say, look,
you know, do well in your life. Go get a degree,
go go get a good job. I think all of that.
I do have a very good supporting family around me. Yeah,
(33:21):
and I think that really really makes a difference. You know,
my brother, my sister, my even my extended family you
know as a as an Indian family. You know, everyone's together,
that uncles, the aunties, cousins, everyone is if it's like
one big family. And I think that made a big
difference to me. I remember like if I would have
a bad day or I would be really upset and
(33:42):
I'd go to a cousin's house, they would realize very
quickly from my body language and they'd ask me what's happened.
And it was those moments that that I think got
me through it. So when was that?
Speaker 2 (33:52):
Okay, I'm going to ask you this before, but because
we a it's a topic that you know, even myself
and as I said, I've not got any condition like
you've gone through or situation. Well, you know, I've gone
through some big situations, but I've tried to end my
life twice. The only race it stopped me is because
you know, maybe I think about the people I'll hear
(34:14):
it if I did that, you know what I mean.
So when was the last time you ever thought of that?
Was it before you met your wife?
Speaker 1 (34:22):
It was before I met my wife? Yeah? Yeah, So
she's changed everything. My wife, by hands down, has changed
my entire I wouldn't be sitting here doing this interview
with you right now if it wasn't for my wife,
I'd be doing my nine to five job, not accepting
the left hand side of my face and just thinking
will I ever be will I ever get married? And
(34:43):
having those episodes of thinking of ending it because I
aren't finding somebody or it's not going anywhere, over and
over again. So she gave you your confidence back, hands down,
she gave me my confidence back. I think in my
initial you know, early early life, it was my father
and him normalizing my condition and telling me that I
can do it. And then now my wife. So nothing
(35:07):
now bothers you about that side of your face anymore.
You've you've grown to excited. Let me you know, I
want to be very very realistic with our listeners that
you know there will be episodes in our lives where
we feel shit. Why me? Yeah? You know. You know
there was an incident not too long ago. I was
just going to get some milk from the shop near
(35:28):
my house and there's a group of kids standing by
the roundabout by the shop and they're like, yoh, you'll
look at that man's space. Man, look at that man's space.
And another kid goes, yeah, yeah, he's got a TikTok channel. Man,
his face is mashed up, bro. And I could hear
them talking about that, and it absolutely hurt me beyond believe.
(35:49):
I came home and I cried. I cried and cried
and cried, and I again made a video and told
my followers about it. And I just want to say
that we go through the episodes, there will be I'm
not always confident. I'm not always happy. You know, I'm
not always the common produce code man who's got these
four steps to make yourself confident? And nobody ever is.
(36:09):
And when you're not, that's when you need to go
back to your personality, your hobbies, your likes, your interests,
your family, your your wife, your husband, whatever it is
a comfort see you go back to that. And I
think now that I have my wife, and I have cricket,
and I have music. I go back to these things
when I have those days. But no, I'm a much
better person and I'm in a much better position I
(36:30):
am now because of my wife. Like you said, you
say you love for cricket. Do you go to the
games a lot to watch it? I do? I do.
In fact, I was at the game this week, Indian
versus England. Here in the edge was the stadium. I
was fortunate enough to be in the hospitality suite, which
is a completely different experience that that I enjoyed so much.
(36:51):
But yeah, I do love the game. My ambition and
my hope and something that in trying to manifest just
to go and watch a boxing day test in Melbourne
one one day and I hope that comes true. Maybe
some listeners in Australia help that dream become a reality.
So how many people have the same condition as yours?
(37:11):
It very rare. It's one in three thousand around the world.
There's organizations in Australia that I work with as well,
actually who are doing a lot of work to raise
awareness around this organization in America. So I work with
a lot of organizations around the world where I share
my story, share my journey from a patient experience point
of view to help young children, young adults. And do
(37:35):
you talk to other people with the same condition too?
I do, yeah, So I'm an ambassador for various charities
of patients who have this condition. I very much come
in from the lived experience point of view, not the
medical because like medicals, there, the doctors, the clinicians are there.
What is not there many times is hey, how are
(37:55):
you how are you doing? Not how's the condition? How
are you doing? Because the mental health aspect of this
condition gets ignored, and it has been ignored by conditions
of ears, not because they're purposely doing it, because they
didn't realize. I Mean, one of the things that I'm
really really working on at the moment, and it's really
important to mention, is that transition between childcare and adult care.
(38:17):
So when you go from children's hospital to an adult hospital,
it's a big, big shift. Suddenly you haven't got that
magic cream on your hand when they're giving an injection.
Suddenly you haven't got those cartoons on the wall, or
you know, the nurse isn't being overly kind to you
and being you know, and you're there and you're in
this serious environment and you're just sitting there thinking this
is really scary, and no one's there to tell you
(38:39):
that it's going to be okay. And I'm trying to
do some work around around that that transition phase as well.
So I like, is it only the face that's affected? Yeah,
it's not any what part of the body going down?
I have tumors growing all over my body, small tumors
all over my hand, like this one here, I've got
lots on my chest. Okay, So I do have tumors growing. Wow,
(39:03):
So how many how many times would you have to
go to the hospital for checkups a year? I've had
twenty five surgeries on my face alone, and each time
it takes about six weeks to seven weeks to recover.
And because as on my face, I kind of eat
during that time, I'm having mashed food. I go and
(39:25):
see my clinician about twice a year, and if I
have to in between I do. And on top of that,
I go and see them for my scholarses as well.
So I'm in the hospital a lot. And now I
work in the hospital. So through my work, I've advocacy.
I now work as a diversity and inclusion advisor to
a trust in England. Wow, what about the medication for this?
(39:49):
So there's no cure. There's no cure for an F
It's one of the things that many of the charities
and the clinicians and the research and are trying to find.
It's more mainly pain management that we can take, so
you know, take some very strong painkillers of renowned and
tramadol Parasits a regular occurrence for me, like sweets. But yeah,
(40:11):
it's so it mostly but it mostly gets to you
in the cold weathers. You feel it more than the cold.
It's a lot worse than the cold weather, a lot
lot worse, especially especially the squaliosis as well.
Speaker 2 (40:20):
Yeah, let's talk about some good things. Tell me about
when the when you got married to your wife. Tell
me about that. How was that that was? I mean
that was an incredible experience. When she's from India, I'm
from England. Her family just did not agree to this
initially that they were the parents that slipe the photograph
and they said no, they said, what will what will
(40:43):
people say? What will the family say? What will the
community say? You know, they'll say, we've let you marry
him just because we want you to move to England.
They're starting to other and on the wedding day, not
many people came from her family. They said, if this
is what you want, this is what you want, but
we don't support it.
Speaker 1 (41:00):
And all Indian girls, well, all girls dream of a big,
fat wedding. She didn't get that in India. We did
a big party, reception party here in England for her,
but she didn't get the wedding that she wanted. Marrying
her has been the best thing. They accepted it. Now
they have now they have now, they have now they've
(41:22):
realized that he's just another human being. And we we
talk and you know that they're seeing how she's doing well,
she's happy and at the end of the day that
that's what matters. They make you in person, they have Yeah.
So when I was in India, I met my wife
in person two days before our wedding, and everyone was
(41:42):
so scared that she's going to see me and reject me.
And we we met in a in a small restaurant
and she came and sat opposite me. And it was
during COVID and it had taken me a lot of
energy and time to get there because of everything that
was going on. And I sat in front of her
and said, so, how does it feel? She was like, yeah,
(42:06):
it's normal. Normal. You made me travel four thousand miles
to sit in front of you, and you're saying it's normal.
Why don't we just go back and I'll just what'sapp?
You don't want to say? You know, I'm just comfortable
with you. Just feels like it just feels like, what's
that call? All right? You know what? Well, this relationship
on WhatsApp? I'm going No, she's that kind of person.
(42:28):
She's she's just like, it is what it is, I'm it.
And when we got married, there's a story the first
time she really saw the brunt of what I go through.
We had to go and get her passport verified to
travel to England. We had to go to a police
station and I take these documents with us and I
went to I went to the reception desk and I
gave the receptionist my my the folder and she looked
(42:49):
at me and she went, oh, this is not right,
and she gave it back to me. She didn't tell
me what was wrong with it, she just gave it
back to me. And I was frantically trying to work
out what's wrong. Thankfully, somebody helped me and said, all
you need is this document photocopy in the stamped So
I went and did all that, came back. When I
got to the reception desk, she got up saying, oh
my god, I'm feeling sick, and she walked off. When
(43:10):
we were walking off, me and my wife. I asked
her what happened, and she goes, when you left. The
receptionist asked me who you were and I said, you're
my husband and everything, and she said you married that.
Oh my god, why would you marry that? Not him
or this person that? Oh, I feel sick and my
(43:35):
wife she cried when she got home and I said
to her, PARREI, I experienced this all the time. And
she we used to go shopping and stuff and the
would be like women staring at me, and in India
is very different. Here, it's subtle. In India, they're like
right next to you, like in your face, staring at you.
They'll pull out their phone and take pictures of you
or something. And she used to go up to them
(43:56):
and like, is there something wrong? Like why are you
staring at him? You know? She would just be like
straight up with them. And India is a different beast.
Every time I land in India, I realized that I
am disabled because people start taking their phone out and
taking pictures of me. Even on our wedding day in
the temple, there was a crowd of people going, a
freak is getting married? People need to fucking grow up
(44:20):
and get over shit. Yeah, but to talk about a
good thing, I mean, once all that happened, the good
things that came out of it was now who I
am Now the advocacy journey, I'm on. You know, I've
become a content creator. I have traveled in the last
two years, traveled to thirteen different countries in Europe and
US talking about my condition, my journey and my confidence. Code.
(44:43):
Launched a book which was rejected by five publishers. Now
it's best selling in US, best selling in Canada, but
it was best selling in Australia. How was it rejected?
They just said, they just said, you're not an author,
you don't have an agent. We don't you know eight
grand past eight thousand pound and will publish it for you.
So then I just went and published on Amazon myself
(45:04):
and so over one thousand copies of it, and I've
just started my own podcast channel phenomenally well, you know,
I've done my first two interviews, and yeah, it is
such a great place. And when I left my job,
I didn't know where I'm going to be in two
years time. It's been two years and I'm in. I'm
in a very good place. You know, three hundred and
fifty thousand followers on social media, lots and lots of views,
(45:27):
lots and lots of love, lots and lots of comments,
traveling the world, wrote my own book, launching my podcast,
working in DEI in the NHS. Now, I say, I
don't know where the next two years are going to be,
but it's definitely going to be a ride to watch,
especially with the podcast launching and the book and everything
else that's going on. You know, you know when you travel,
do you do you get stopped when you're traveling a lot,
(45:50):
like going through customs or anything like that. For the passport, Yeah,
the electronic gates don't work with me very well. The
electronic gates don't recognize my face, so that those those
face recognition cameras they recognize my face, and that's always
very very embarrassing. You know, you're standing in a queue
in immigration and you go into the booths where scan
(46:11):
your face and it makes the magnets pick up on
the electronics.
Speaker 3 (46:15):
When you go from they don't but the face recognition,
and a lot of countries have this face recognition now,
and every time, every time I approach one, I'm really
really nervous that the whole queue behind me is going
to now look at me and realize it's not working.
Speaker 1 (46:34):
What's what's your biggest regret? My biggest regret, Well, I
think you're not starting my advocacy sooner. You know. I
wish I'd started doing what I'm doing now a lot
sooner than I have. I hid myself for too too long,
but too too long. My social media was just my
(46:55):
left hand side of my face, but too too long.
I did not accept my neurified rom toosis. Now I
say this is me, this is who I am. I
wish i'd said that. Lots through that and what would
you say? How would you describe yourself in one word? Yeah? Strong?
I think I'm definitely strong because it takes a lot,
(47:17):
But it takes a lot to go through what I
go through on a on a daily basis. But but
I get through it. I get through it with the
belief that it's going to be okay. Well, you know what,
I've really appreciated you coming on and sharing your amazing
journey with me, and I would love to stay in
touch at you in the future to see how you're
going on and thank you. But I I you know what,
(47:38):
I I take my hat off to you, mate, because
you are a survivor and you are strong. Thank you
so much. Thank you. That means a lot. But I
really appreciate you coming on mate, and a good look
in the future with you and your wife. Thank you
so much.
Apoche production. Welcome to Secrets of the Underworld. I am
Neil the muscle comments, and in this.
Speaker 2 (00:15):
Episode, I speak with Amit Ghosh, who shares his journey
living with a rare condition and how he turned pain
into purpose.
Speaker 1 (00:22):
And I realized other children didn't want to sit next
to me. They would hide behind their parents and point
out my face and say, mummy, mummy, what happened to
that boy's face. A kid pointed at me and said, hey,
you don't need a Halloween mask. You've got a permanent
Halloween mask on your face. Twenty five years on from now,
I still think of that comment. I did not accept
the left hand side of my face. I hid it.
(00:44):
But on the third occasions he said to me, I'm it.
If I marry you, I'm not going to marry half
of your face. I know exactly what you're doing. Stop
stop hiding yourself and own it. Thank you for coming on.
Speaker 2 (00:58):
When I read your story and seeing an article on you,
I actually was very intrigued by this because I'd never
seen a story like this ever, so I, you know,
definitely wanted you to come on the podcast, and I
was grateful that you've found the time to come on,
So thank you for coming on by podcast. I just
want to say that before we get into everything else
(01:20):
about your life and what you had gone through, just
tell me about you know, you growing up and the
difficulties of growing up.
Speaker 1 (01:27):
So I was born with this rare genetic condition called neurofibromatosis.
It's a condition that causes tumors to grow on nerves.
So when I was about two years old, they realized
that there's some bumps that are appearing on the left
hand side of my face. They thought I might have
tripped or fold or something. But when we went to doctors,
(01:47):
it very quickly sort of realized that this was a
condition called neurofibromatosis. Condition no one had heard of in
my family. We didn't know how to really respond and
deal with it. I mean I was two years old,
so it was it was my family that were going
through that initial stage of really making sense of it.
(02:07):
For me, I think I realized things in early sort
of lower school, so primary school in UK, when I
was in year four, year five, maybe when I was
about five or six years old going into school, when
I realized other children didn't want to sit next to me,
other children didn't really want to be my friend. That's
(02:29):
what I really realized. There's something different, and at that
age you don't really realize what depression or anxiety is.
But looking back now, I know I was going through
those emotions because I didn't want to go to school.
I didn't want to be in front of other children
because they would hide behind their parents and point out
my face and say, mummy, mummy, what happened to that
(02:51):
boy's face? Wow? It was really challenging at that time.
It was really really challenging. Whether he's just helpful back
then to an extent, yes, But like I always use
an example of pe lessons, So whenever we go in
to pee lessons, you'd go into the p hall and
everyone would come over and the teacher would say, hey,
(03:11):
go pair up with somebody, and then everyone would run
to their athletic person or their friends. And I would
stand there waiting for someone to pair up with me. Wow,
and nobody would want to do that because they were scared,
they were curious, and at that point the teacher would
either pair up with me himself or he would nominate somebody.
So there was only much that teachers could do. I mean,
(03:34):
there was an incident where I got called a name.
A bit later on in my life, when I had surgery,
I got called They were talking about Halloween masks. Children
were talking about buying Halloween masks, and a kid pointed
at me and said, Hey, you don't need a Halloween mask.
You've got a permanent Halloween mask on your face. Now,
that comment really really upset me. In twenty five years
(03:55):
on from now, I still think of that comment and
it upsets me. But when I told the teachers and
the teachers called those boys into a room, all that
those boys said was I was only a bit of Bantermiss.
We were only joking around. So you know, as young children,
you know, we don't know at that age, don't We
just don't know what's a joke or a laugh at
(04:16):
that time. Is something that was at least for me,
a lifelong scars And I still remember today and say
that you are two years old, that you kind of
found out about the disease that you had, Well, what
about prior to that, when you were born? Did the
doctors know anything then or they didn't know. I was
born in a small town in India, and now we
(04:38):
know that. You know, when a child has neurofibromatosa's. There
are some signals there. There are these small spots that
will appear in the body. In the town I was born,
and it was a very small town in India. They
didn't know that. And now we will look out for
it because we know. And nobody in my family had
this condition, so we didn't know to look out for it.
These spots just looked like freckles on the skin. Wow,
but no, we didn't know until the age of two.
(05:00):
Nobody really How did your parents deal with this? My
dad used to live in England. My dad living in
the time when I was born, he had a restaurant here.
His ambition, I'm the last born of four children. From
the youngest, his ambition was that he would move back
to India after I was born. You know, whatever he
is done, he would close up shop and then moved
(05:20):
to India. And this is in the late eighties early nineties.
And when I was born with this condition, they realized
I have this condition. My dad made that brave decision
of saying to his family that were moving to England
and some of my siblings were in school in high school.
They had to uproot their entire life and move to England.
So it was a real, real challenge for them. But
(05:42):
I think my dad played a big role. My mother
to make that move from India to England restart her
life here in a small home, sharing it with my
uncle at that time, it was really really difficult for them,
really really difficult. But like I said, my dad played
a big role in normalizing my condition. Cricket was a
(06:03):
big hobby for me as a young child. I used
to love playing cricket, but I always used to be
scared to play cricket with other children. And my dad
bought me a bat and a ball and I remember
my uncle saying to my dad saying, what are the
ball hits his face, you know, and you know, ruins
it even more. And my dad said, my boy wants
to play cricket. He wants to play cricket. And is
(06:24):
that normalization that helped shape who I am today? How
many brothers and sisters do you have? So I've got
one brother, two sisters, Okay, so how did they take it?
When did they realize that there was something wrong with
the younger brother? I think, you know, obviously, when when
I was diagnosed, everyone had this shock that there's something
wrong here. They didn't want to move to England. You know,
(06:46):
they were in school, they had their friends, their life.
For them, it was a challenge. They're grateful to me
now because I think their life got enhanced by moving
between England and having the education and everything the infrastructure
around them that they had. At that time. There was
remorse that they They talked to me quite openly about
(07:09):
it now and say that, you know, they weren't very
happy with me, you know, lashed born and suddenly now
because of me, they're having to leave all their friends
and their dreams, their their moments behind and moved to
a country which was cold, cloudy, snowy and miserable. That's
that's how they described it at that time. But didn't
(07:30):
they see that, you know, they had to do it
because of your condition, you know what I mean that
they didn't realize that. I mean they were young. They
were young, so I mean, you know one of them
was what five six years old, the other one was
like nine. They just wanted to have fun, but the
days but okay, they were that yeah, they were that age.
So were they the same as your school kids? A
(07:50):
bit weary with playing with you or playing with you.
I'm not playing with my brother because of this condition
or were they okay with you? They were okay with it.
They were okay with it because they they grew into
knowing about it. Yeah, it wasn't. It wasn't like they
wanted to avoid me. My brother is a big was
with a big protector of me, and we used to
play cricket together and everything. It was just that move
were with their friends. It's like, you know, you tell
(08:12):
a high school kid that we're moving now because that
has got a new job and he's got to leave.
It's one of those things and you've got your friends,
You've got the little candy shop that you opened in
school and you're selling pop. My brother used to like
do that. You'd nag my mother to buy him a
piano because he's he likes his piano that I've seen.
He'd play with it for two weeks and then he'd
go and sell it in school. So you know, it
(08:35):
was that kind of thing lifestyle he had. Yeah, and
my sister and everyone had, and that suddenly it was
all up rooted going back to school.
Speaker 2 (08:43):
Like because I understand the way that there was a
lot like when I was in England, and I grew
up like I came out here when I was eighteen,
So I understand that the way the banter was and
the and the bullying was in school because back then,
you know, believe it or that, I used to get
called the N word because I was the only kid
who went overseas came back with a town and they
(09:05):
didn't understand that, and they didn't understand how a white
kid can go overseas come back a different color, and
I would get called the N word and they wouldn't
talk to me for weeks.
Speaker 1 (09:15):
And these are of my best friends. So I know,
I understand the banster that was going on back in
them days. But what I'm trying to get with it
how bad was the condition then when you were growing
up in primary school before you went into secondary school. Oh,
it was really bad. So as a part of the condition,
it can grow quite quickly, quite rapidly. So for the listeners,
(09:37):
the left hand side of my face is completely affected
by this. It's very slow and it's very big. I
wear an artificial eye. Now what you're seeing we know
as an artificial eye. When I was in year seven,
so when I was eleven years old, the eyelid had
grown so so bad that the doctors described it as
the brain would push the eye out if they don't intervene.
(09:59):
And there's there's images and pictures on my on my
social media. I've looked before, and I had my eye
removed in year seven. So in year seven I had
this life changing, eighteen hour surgery. Eleven year old kid
having this live changing surgery and I removed. So I've
got this confidence code that I talk about. It's the
(10:20):
four steps of confidence. Step one is embracing our personality.
So in year six I had a shift. I told
her that I liked cricket and it could never play
with other kids, but one day I asked him if
I can play, and reluctantly they handed me the ball.
I still remember the batsman was holding it with one hand, going, oh,
what's this kid going to do? But little did they
know that I was bowling in my garden for the
last few years. So I came in bowling and I
(10:41):
bowled really well, and I hit the bin. So not
the stunt, the bin because you're standing the bin. And
I hit the bin and I get him out, and
suddenly I go from the boy who's got a funny
face to the boy who plays cricket. Yes, But then
I go into year seven and I have this surgery
and I'm back down. And for a very very long time, Neil,
I did not accept the left hand side of my face.
(11:03):
I just didn't I hit it, the photographs I took,
the places I sat, I just didn't want to show
the world the left comes out of my face. So
did you have times when you didn't want to go
to school or you didn't want to go out the house.
Almost every single day, every single day, I did not
want to go to school because I knew, you know,
because I can't see from the left hand side of
my face. I used to have other kids who would
(11:25):
sit on the left hand side of my face and
do like rude gestures, and then the whole classroom would
start laughing, and I wouldn't know why they're laughing, and
then suddenly I'd look and then as somebody just put
their finger up at me, and it was just funny.
And you know, even some of my friends who were
my friends people who they would laugh as well, because
it's a collective thing. Everyone's just thinking it's funny. And
(11:47):
the teachers back then didn't help at all. Even in
secondary school, they tried to make it stop, like you know,
they'd tell the kids to stop it, they'd have a word,
But no, I think you know what really should have happened.
And the reason why I do what I do today
is you should have speakers coming in and speaking about
visible debut. Now what I do is I go into schools,
(12:09):
like I said, and I talk about my condition and
I talk about my experiences in school. And one of
the reasons I do it is because if someone had
done that to me when I was in school, and
a speaker came in and spoke about their journey and
how they it would have made a big difference to class.
The teachers a saying hey, stop at kids, don't do this,
it's not nice. Yeah, doesn't have that impact. Yeah, correct. Correct?
Speaker 2 (12:30):
When did you actually get the eye patch? Prom How
old were you then.
Speaker 1 (12:34):
Charles eleven years old when I was made eyepatch. I
had to wear an eyepatch for about a year before
the face healed, and then they started making this prestigiously.
Speaker 2 (12:44):
So tell me when you went in for the surgery, Like,
because you're only like ten or eleven years old, you're
going in for this major surgery.
Speaker 1 (12:51):
What is going through your head? You know what I mean?
Speaker 2 (12:54):
As an eleven year old kid, did you even know
what you're going to get into for this?
Speaker 1 (12:58):
I didn't know what was going into. What I knew
is I'm going to have and it have an artificial eye. Yeah,
both of my eyes will look better. And I was
just excited about that prospect. But now I hear stories
from my mum about my late father locking himself up
in a room crying after signing the consent form, coming
(13:19):
home and saying, I don't know what I've just done.
You know what if we lose our son. It was
my mother and my father who really went through the
turmoil of or not me. What was the recovery like
after this? As eleven year old kid, I was in
hospital for about six seven weeks. I had like braces
on my brain because the way they did this was
(13:41):
to cut my skull and take the eye out from
the back of the skull. And I'm still very close
to the consultant and the doctors who were involved in
that surgery, and they when they tell me what it involved,
it's it's very scary.
Speaker 2 (13:58):
Wow, now you're older with this and you can and
you look back at what you've been through. I personally,
I don't know how you go through because I've not
been through anything as difficult as that. But I know
what it's like to lose friends and not have friends, because,
as I said, when you're a kid, even up to
age of fourteen, and you don't have friends or because
of some stupid banter, it's lonely, you know what I mean.
(14:20):
And to come home from school knowing that you haven't
got a friend, and then you're you're at home, you
see and everyone else play in the park and you
can't go over to play with them.
Speaker 1 (14:30):
What was going for your head? Like?
Speaker 2 (14:32):
Are you just a loner in the house or you
are you going out and just doing your own thing?
Speaker 1 (14:37):
What was because you said you didn't like to go
out too because of the way you looked. I was
a loner. I was aloner. And that was one of
the names I used to get called. From the many
names I used to get called, loner was one of them.
I used to sit in the corner of classrooms really
really upset. I used to sit in my bedroom a
lot and draw on my wall in my bedroom, or
(14:59):
you know, write or play play Feefa on the laptop
for like what made you happy back then? What was
making you happy? And to stay from going insane. Cricket
was a big thing, playing cricket. I was to come
home and play cricket. I remember a coach saw me
playing on the street and asked my dad if I
(15:20):
could go and play in the club. So cricket made
me really happy. Music, so percussion instruments. I used to
love playing Indian percussion instruments that were bigger than me.
So I'd go into a wedding and I'd pick up
a drum and I'd start playing it because I was
so conscious that people are staring at me. If I
pick up a drum, people, I can focus in the drum,
and I think that people are going to focus in
(15:40):
the drum. So that those were the things that that
was like my escape. Really how was it going to
family functions like a wedding? How was that really hard?
Really really hard? Because like Indian weddings in itself are
so like massavish, flamboyant, you know. And I remember a
story this is this is about about six five or
(16:03):
six years ago, just for married. In fact, I was
going to my friend's wedding and Auntie G and an
anti G in our culture is known as the one
that just goes around and gossips all the time. So
she came over to me and she said are you
Are you upset? And I was like, why would I
be upset? She's like, no, we heard that your family
is trying to get you an arranged marriage and it's
(16:23):
not really working out. Are you upset? And by the way,
arrange marriages and our culture are like real life tender
photographs are exchange versus swiping is a parent, so my
photos were always rejected by parents. So she said, oh,
I heard you know your your family's trying to get
you in arrange marriage, but it's not really working out.
(16:45):
And then she tried to comfort me, and she tried
to comfort me by saying, don't worry. If you had
a daughter, would you want your daughter to marry someone
that looks like you? And that was meant to be
comforting and and you knoww disability no disability. We when
we go into weddings or when we go into a
new environment, we are conscious about ourselves. We do feel
(17:07):
in school and we are always thinking if someone looking
at me is someone judging me. For me, that was
just multiplied by one hundred. So I would just sit
there playing on my phone, looking down, not making eye
contact with anybody, and then slowly I would just go
and speak to somebody I know really well or something
like that, or stand in the corner somewhere. Family events
are really really hard. Did things get better as you
(17:30):
got older with people in school? Did they come to
terms of it or did you think it got harder?
Things got better in college definitely, because I learned this
thing of embracing who you are, like be like, you know,
embracing my personality. Although I didn't accept the left hand
side of my face. I so you're you're still not
(17:50):
accepting it. No, no, no, I didn't learn to accept
the left hand side of my face until I met
my wife. Wow, that's the story which I'll come on to.
But college was a little bit better because I started
to make friends just by talking about ball, cricket, things
like that. But still I used to sit in a
certain part of the room. When I would stand with
(18:11):
my friends, I would stand on the right hand side,
so they've seen this side of the right side of
my face. But yeah, I did not learn to accept it.
And what happened was after that Auntie g experience about
a year. Year and a half after that, I started
speaking to a wonderful woman in India. My friend introduced
us because my family were looking to get me an
(18:33):
arranged marriage. And my friend was like, hey, we speak
to this girl. I think she should. You and her
would really get on. And he knew her and he
went and spoke to her and she said no. First
she said, please don't give my number to this man.
I don't want to move to England. I don't want
to get married. I'm too busy. She was a makeup
artist by profession. And he came and told me and
he was like, she said no, but message her anyway.
(18:54):
I'm like no. It was like, no, do it? Trust
me to send her a message. One of my sisters
has now moved back to India and my wife now
she used to in the next road next to her.
She goes, look there's some commonality there. Just message And
I was like, so I sent her a message and
I said, hey, my friend gave me a number. How
are you doing ukay? And she did reply for about
(19:16):
two three hours and I was like, woh, my done
this is just such a bad idea. But then she
replied back. She replied back saying, hey, I know. He said,
how are you you okay? And then we started messaging
and I was talking about my sister living near her,
and there was some commonality and we started messaging and
there was a click. There was a click, and we
can continued messaging and I said to her, I like eating.
(19:37):
She said, I like cooking. I was like, this is great.
We weren't made for each other. And we had all
these answer and I used to video call her a lot,
and I used to video call her and I used
to cover the left hand side of my face and
show her the right hand side, and she let it
go once or twice. But on the third occasion she
said to me, I'm it if I marry you, I'm
not going to marry half of your face. I know
(19:58):
exactly what you're doing. Stop stop hiding yourself and own it.
And it was at that point that I learned to
do big things. One that she's the one for me
because you know, actually accepts me. But two, I need
to learn to accept who I am before others can
accept me. And now when I go and speak at schools,
and colleges I very much talk about this point that
(20:20):
we live in this world now where we're all constantly
seeking validation externally. We want to be liked by others.
We want to post a video and social media and
get more likes than our friends. We want to we
like by our teachers, like by our friends, our parents.
But we don't spend enough time in liking ourselves. We
don't spend enough time in giving ourselves validation. And I
(20:44):
ask this really funny question in colleges all the time,
and it gets things giggling, but thinking, I say, would
you go on a date with yourself? And then they
think about it, and I'm like, well, if you're not
going to spend two hours with yourself, what makes you
think someone else is going to spend that time with you?
And the same can apply for a job interview in
a professional world. If you're not going to back yourself,
(21:06):
why would someone else back you? That's correct, well said,
that was actually I was coming up to what you
just said then, because of how did you go trying
to find your first job? I worked in call centers
for a very long time. Was that by choice? Because
you didn't want to go into the workplace. When I
think back now, it was I didn't probably accept it
(21:26):
at the time, but I didn't. You know, A lot
of my friends went to work in like retail shops
and things like that, and I went straight into a
call center, which is why I made a career out
of sales and marketing and the end of it. But yeah,
I went and worked in call centers. And I remember
the very first job that I did, going into work,
going into training, apparently everyone was informed that there's going
(21:49):
to be a man starting who has a visible difference.
Everyone be kind, everyone be nice, And I found that
a little bit strange thinking about it now. Keep been
through some point. Was there any pain in this, like
physical pain or not? The condition has a lot of pain.
The condition comes with scoliosis, which is a curvature of
(22:12):
the spine. So my spine is curved. So my love
of cricket was very short lived because as I got older,
I could no longer bowl. I was a leg spinner,
and as I got older, I could no longer bowl
because of my because of my spine, I had a
really really long surgery on my spine and after this
I constantly have neck pain because of it. I constantly
(22:35):
during the cold, and my face gets very sore and
very painful. Inside of my mouth, the tumor grows there
as well, and sometimes I bite into it and then
it starts bleeding. So you can imagine you're sitting in
a dinner with some friends and suddenly you bit into
the tumor and you're spitting blood. And it's horrible, isn't it?
And can they not remove that? Can they not remove it? Still?
(22:56):
They can, they can, They can remove it, But the
tendency of the condition is it will always grow back.
And when you play with it, when you when you
temper it, it grows back with more force.
Speaker 2 (23:08):
So going back to when you're the eyepatch and the
eye patch you've got, now, how how regularly do you
have to change that from better? Like, because it's had
an adult one that's an adult size, so so how
so you would have changed it every time you went
from a different age.
Speaker 1 (23:21):
I changed it about once year because our skin tone,
our color, we get wrinkles, we get older, unfortunately, so yeah,
every year they give me a new one.
Speaker 2 (23:31):
Wow, And it's not that's not painful or anyway or
it's not like.
Speaker 1 (23:38):
Wow, your viewers will see this, but it literally just
comes out like dentures, like you know, how you take
and then it just literally clips back on with magnets,
so it's it's magnetic to go back on. Wow. But
it's not. It's not like itchy in any way or discomfort.
It is very uncomfortable. I've just become very comfortable at
(23:58):
work now actually, so if we're in a meeting with
with our direct colleagues, I'll take it off in the
media because you know, it gets really wet and sweaty
and uncomfortable. Well, so when when you shower, you'd have
to take that off or you keep it on. Yeah,
a shower, I take it off. When I'm at home,
I leave it off. A lot of times when I
go to sleep, I leave it off. Jesus Christ. So
(24:21):
I want to ask you about you. You said that
when you got older it kind of didn't get us worse,
It got kind of better. But I actually thought it
would have got worse because the fact that when you're
you know, I don't know if you did ever go
into a pub when you were in college or like that,
and people on the alcohol I know what they're like
in fucking England that they get rowdy, get on a
few pints, and then they'll they'll pick someone out in
(24:41):
the pub that they want to fucking have banter with.
Oh yeah, so no, let me let me. It got
better in terms of my friends direct friend circle. They
became more supportive and they would do banter with me
just like they do banter with their friends. Yeah. What
wasn't good was going into pubs, going into cafes and
my friends were like, I want to go knock that
guy out right now. I want to go punch me
(25:02):
in his face. And I'm like why, it's like staring
at you r a gold stare up me. It is
like I bet if you saw her face in the
make in the morning without makeup, it'd be worse than
yours on it. You know. It's that kind of stuff.
My friend would say to me to like comfort me.
But yeah, like the women would stare at me like,
oh my god, what the hell is that?
Speaker 2 (25:19):
Because I understand that for I think I heard that
you actually went into a cafe and they wouldn't save you.
Speaker 1 (25:25):
Yeah, so this is this is very very recent. This
is what two three months ago when I went into
oh that recent. Yeah, so my life had a turning point.
My life had a turning point. So, like I said
to you, I was working in sales. I was I
was getting on with it. I'd graduated, got married, got
my house. My wife had moved to England, and she
(25:46):
said to me, hey, am it, why don't you create
some content, Why don't you share your journey? I think
your attitude towards life of this get on with it
can help people. And she asked me to make a
TikTok video and I was like, no, you know, I'm
too busy, and wives have a way of getting what
they want. So eventually I create that video and you know,
(26:07):
I'm so thankful for it now because that video went viral.
I got over one hundred thousand views on my first
single video. My TikTok Instagram was growing at like one
thousand followers per day, but it wasn't really about the followers.
It was more about the comments and the messages that
were coming in of people saying I'm it, I'm going
through the same journey as you, thank you, or asking
(26:27):
me questions. And I started to create more and more content,
and I started getting opportunities to go and speak on stage,
and I got this opportunity from a charity in America
who invited me over and they said the conferences in
San Antonio. I didn't know where San Antonio was. I
had to go and google it. That's you know, this
(26:48):
is how new OL's doing all this. And they were like,
we'll bring you and I was like, I can't afford
the tickets, so I know, we'll bring you over. We'll
pay for your hotel, we'll pay for your travel, we'll
give you a bit of money to do this talk
as well. Went to America and spoke in front of
two thousand people. It was a charity for my condition
and it was all these patients for their parents were
there and I spoke about my journey. I spoke about
growing up. And I came back to England and spoke
(27:11):
to my manager and said to my manager, it's been
so incredible being in this talk and he was like,
I mean, why don't you go to my daughter school
and talk about your journey. And then I went to
his daughter school and I spoke about bullying. I spoke
about some of the things that happened to me in
school and how that made me feel, and how we're
sure be kind and mindful and one thing happened in
(27:32):
that school that changed everything forever, and that was there
was a young boy named Vinnie in that session who
came and took some photographs with me. Two weeks after,
I got a newsletter sent to me from the school
and it was a news article from Vinnie. And Vinnie
was waiting for a heart transplant, and he heard my
(27:53):
talk and started playing football. When he heard me playing cricket,
he went and spoke to his mom and the quote
he said to his mom was I want to be
a motivational speaker like the man who came to our school.
I was no motivational speaker at that point. I read that,
went back to work and said to my manager, thank
you so much for sending me to your daughter school.
(28:13):
Here is my notice. I am leaving. I'm going to
go do this for the rest of my life. I
did not know how I'm going to make money from this.
I did not know how I'm going to monetize. We'd
just moved into our new house with my wife and everything.
But I just wanted to do it. And I think
back now, and I think about Simon Sinok and how
he talks about finding your why. I had found my why.
This is my why. I want to share my story.
(28:35):
I want to help people. I want to inspire people.
And I started speaking at school. I started speaking around
the world. I started doing learnch and learns, creating podcasts,
and I started journaling all of this. I started journaling
all my childhood memories and I turned it into a
book called Born Different. I sent it to four or
five publishers, all who rejected it. Now fast forward to
(28:57):
this coffee incident. I'm in London, I'm with my wife.
I go for a walk in the afternoon, and I
go into this coffee shop, predominantly men sitting there staring
at me as if they've seen a ghost, with no exaggeration.
And I go over to the desk and I order
a coffee and a cake. And she looks at me
(29:17):
and says, oh, we're not serving anymore, and gives me
a strange look and turns around and walks away. Clearly
they were serving, because there were a lot of people
sitting in the shop, and there was a lot of
people in front of me as well who had just
ordered a coffee. I was left there, stood thinking what
just happened. I looked around and people are still giving
me this look of who are you? What's happened to
(29:38):
your face? Like I could just read their mind. So
I walked out and I was really really upset, and
I thought, you know what, Born Different needs to come
out to the world. Wow. I created a post about
how upset I was because I have very good followers,
and my followers are like my friends. They all all
support my journey. So I put this post out, talked
(30:01):
about it. Loads of people sent me comments of reassurance.
Loads of people DM me, hopefully please tell me you
named and shamed the cafe. I didn't. I would have
named and shame that cafe. I spent out official statement
to them from from a charity that I'm an ambassador of.
I made a police record of it, but I did
(30:23):
not name and shame because I just thought the mission
is bigger than that. The mission is to educate people.
You know, we already live in this world where there's
so much turmoil. The last thing I want is for
my followers, my friends on social media to go there
and bumpud. Did your wife want to go back in
(30:44):
and order a coffee and say why you didn't save me?
Or I came? I came back. She didn't go with
me when I went to the walk, but when I
got back home, when I or the hotel, I told
her what happened, and she was just like, let's do
something about this, you know. And I was like, I
don't know what to do, and she's like, let's tell
the police at least, you know, and the police can
send a statement out to them because they need to.
(31:05):
You know, in the Equality Act, you can't discriminate someone
for the way they look. But they just said they
weren't solving they were. They were like, we we may
have been opened, but we stopped serving at a certain
time and then we closed. That's all it was. But
looking at their opening and closing times on Google, they
weren't closing anything. I would have stood there and waited
for the next customer to come and get his coffee.
(31:26):
I swear, have you ever, you know, what situations like
that and everything that you've had in the past, have
you ever wanted to end your life? Yes, I've never
been asked that question. I've done lots and lots of
podcasts and I've never been asked that question. And I've
always been mindful about how. But there have been especially
(31:52):
when I face rejection, especially when I face rejection from women,
like I've been on dating apps a lot, and I
was very upfront about my condition. And when I would
and get the response like I put my heart and
soul into send like someone a message like I'd read
their profile, I'll be like, yeah, this is I could
really I'm sorry, you know, and then the replies back
(32:15):
saying I'm sorry we can't connect. And there was one
person that I did start speaking to and she said,
I mean, you're a really nice person, but I can't
see myself being intimate with you because of your condition.
And that led me to things like thinking of self harm,
thinking of is it even worth it? I threw my
(32:37):
phone again. Of the amount of phones I've broken from
just getting my frustration out is unbelievable. You know. It
was one of the ways that I wanted to get out,
and the coping mechanism was just to break things. So
what stopped you from doing self haund to you? I
think family was one of the biggest ones. Like in
(32:59):
the amount of times you pick something up, you look
at yourself and then you think, think of my mother.
You know, I lost my when I was nineteen, Thinking
of all of that, thinking of my father putting his
hand on my head and trying to bless me and say, look,
you know, do well in your life. Go get a degree,
go go get a good job. I think all of that.
I do have a very good supporting family around me. Yeah,
(33:21):
and I think that really really makes a difference. You know,
my brother, my sister, my even my extended family you
know as a as an Indian family. You know, everyone's together,
that uncles, the aunties, cousins, everyone is if it's like
one big family. And I think that made a big
difference to me. I remember like if I would have
a bad day or I would be really upset and
(33:42):
I'd go to a cousin's house, they would realize very
quickly from my body language and they'd ask me what's happened.
And it was those moments that that I think got
me through it. So when was that?
Speaker 2 (33:52):
Okay, I'm going to ask you this before, but because
we a it's a topic that you know, even myself
and as I said, I've not got any condition like
you've gone through or situation. Well, you know, I've gone
through some big situations, but I've tried to end my
life twice. The only race it stopped me is because
you know, maybe I think about the people I'll hear
(34:14):
it if I did that, you know what I mean.
So when was the last time you ever thought of that?
Was it before you met your wife?
Speaker 1 (34:22):
It was before I met my wife? Yeah? Yeah, So
she's changed everything. My wife, by hands down, has changed
my entire I wouldn't be sitting here doing this interview
with you right now if it wasn't for my wife,
I'd be doing my nine to five job, not accepting
the left hand side of my face and just thinking
will I ever be will I ever get married? And
(34:43):
having those episodes of thinking of ending it because I
aren't finding somebody or it's not going anywhere, over and
over again. So she gave you your confidence back, hands down,
she gave me my confidence back. I think in my
initial you know, early early life, it was my father
and him normalizing my condition and telling me that I
can do it. And then now my wife. So nothing
(35:07):
now bothers you about that side of your face anymore.
You've you've grown to excited. Let me you know, I
want to be very very realistic with our listeners that
you know there will be episodes in our lives where
we feel shit. Why me? Yeah? You know. You know
there was an incident not too long ago. I was
just going to get some milk from the shop near
(35:28):
my house and there's a group of kids standing by
the roundabout by the shop and they're like, yoh, you'll
look at that man's space. Man, look at that man's space.
And another kid goes, yeah, yeah, he's got a TikTok channel. Man,
his face is mashed up, bro. And I could hear
them talking about that, and it absolutely hurt me beyond believe.
(35:49):
I came home and I cried. I cried and cried
and cried, and I again made a video and told
my followers about it. And I just want to say
that we go through the episodes, there will be I'm
not always confident. I'm not always happy. You know, I'm
not always the common produce code man who's got these
four steps to make yourself confident? And nobody ever is.
(36:09):
And when you're not, that's when you need to go
back to your personality, your hobbies, your likes, your interests,
your family, your your wife, your husband, whatever it is
a comfort see you go back to that. And I
think now that I have my wife, and I have cricket,
and I have music. I go back to these things
when I have those days. But no, I'm a much
better person and I'm in a much better position I
(36:30):
am now because of my wife. Like you said, you
say you love for cricket. Do you go to the
games a lot to watch it? I do? I do.
In fact, I was at the game this week, Indian
versus England. Here in the edge was the stadium. I
was fortunate enough to be in the hospitality suite, which
is a completely different experience that that I enjoyed so much.
(36:51):
But yeah, I do love the game. My ambition and
my hope and something that in trying to manifest just
to go and watch a boxing day test in Melbourne
one one day and I hope that comes true. Maybe
some listeners in Australia help that dream become a reality.
So how many people have the same condition as yours?
(37:11):
It very rare. It's one in three thousand around the world.
There's organizations in Australia that I work with as well,
actually who are doing a lot of work to raise
awareness around this organization in America. So I work with
a lot of organizations around the world where I share
my story, share my journey from a patient experience point
of view to help young children, young adults. And do
(37:35):
you talk to other people with the same condition too?
I do, yeah, So I'm an ambassador for various charities
of patients who have this condition. I very much come
in from the lived experience point of view, not the
medical because like medicals, there, the doctors, the clinicians are there.
What is not there many times is hey, how are
(37:55):
you how are you doing? Not how's the condition? How
are you doing? Because the mental health aspect of this
condition gets ignored, and it has been ignored by conditions
of ears, not because they're purposely doing it, because they
didn't realize. I Mean, one of the things that I'm
really really working on at the moment, and it's really
important to mention, is that transition between childcare and adult care.
(38:17):
So when you go from children's hospital to an adult hospital,
it's a big, big shift. Suddenly you haven't got that
magic cream on your hand when they're giving an injection.
Suddenly you haven't got those cartoons on the wall, or
you know, the nurse isn't being overly kind to you
and being you know, and you're there and you're in
this serious environment and you're just sitting there thinking this
is really scary, and no one's there to tell you
(38:39):
that it's going to be okay. And I'm trying to
do some work around around that that transition phase as well.
So I like, is it only the face that's affected? Yeah,
it's not any what part of the body going down?
I have tumors growing all over my body, small tumors
all over my hand, like this one here, I've got
lots on my chest. Okay, So I do have tumors growing. Wow,
(39:03):
So how many how many times would you have to
go to the hospital for checkups a year? I've had
twenty five surgeries on my face alone, and each time
it takes about six weeks to seven weeks to recover.
And because as on my face, I kind of eat
during that time, I'm having mashed food. I go and
(39:25):
see my clinician about twice a year, and if I
have to in between I do. And on top of that,
I go and see them for my scholarses as well.
So I'm in the hospital a lot. And now I
work in the hospital. So through my work, I've advocacy.
I now work as a diversity and inclusion advisor to
a trust in England. Wow, what about the medication for this?
(39:49):
So there's no cure. There's no cure for an F
It's one of the things that many of the charities
and the clinicians and the research and are trying to find.
It's more mainly pain management that we can take, so
you know, take some very strong painkillers of renowned and
tramadol Parasits a regular occurrence for me, like sweets. But yeah,
(40:11):
it's so it mostly but it mostly gets to you
in the cold weathers. You feel it more than the cold.
It's a lot worse than the cold weather, a lot
lot worse, especially especially the squaliosis as well.
Speaker 2 (40:20):
Yeah, let's talk about some good things. Tell me about
when the when you got married to your wife. Tell
me about that. How was that that was? I mean
that was an incredible experience. When she's from India, I'm
from England. Her family just did not agree to this
initially that they were the parents that slipe the photograph
and they said no, they said, what will what will
(40:43):
people say? What will the family say? What will the
community say? You know, they'll say, we've let you marry
him just because we want you to move to England.
They're starting to other and on the wedding day, not
many people came from her family. They said, if this
is what you want, this is what you want, but
we don't support it.
Speaker 1 (41:00):
And all Indian girls, well, all girls dream of a big,
fat wedding. She didn't get that in India. We did
a big party, reception party here in England for her,
but she didn't get the wedding that she wanted. Marrying
her has been the best thing. They accepted it. Now
they have now they have now, they have now they've
(41:22):
realized that he's just another human being. And we we
talk and you know that they're seeing how she's doing well,
she's happy and at the end of the day that
that's what matters. They make you in person, they have Yeah.
So when I was in India, I met my wife
in person two days before our wedding, and everyone was
(41:42):
so scared that she's going to see me and reject me.
And we we met in a in a small restaurant
and she came and sat opposite me. And it was
during COVID and it had taken me a lot of
energy and time to get there because of everything that
was going on. And I sat in front of her
and said, so, how does it feel? She was like, yeah,
(42:06):
it's normal. Normal. You made me travel four thousand miles
to sit in front of you, and you're saying it's normal.
Why don't we just go back and I'll just what'sapp?
You don't want to say? You know, I'm just comfortable
with you. Just feels like it just feels like, what's
that call? All right? You know what? Well, this relationship
on WhatsApp? I'm going No, she's that kind of person.
(42:28):
She's she's just like, it is what it is, I'm it.
And when we got married, there's a story the first
time she really saw the brunt of what I go through.
We had to go and get her passport verified to
travel to England. We had to go to a police
station and I take these documents with us and I
went to I went to the reception desk and I
gave the receptionist my my the folder and she looked
(42:49):
at me and she went, oh, this is not right,
and she gave it back to me. She didn't tell
me what was wrong with it, she just gave it
back to me. And I was frantically trying to work
out what's wrong. Thankfully, somebody helped me and said, all
you need is this document photocopy in the stamped So
I went and did all that, came back. When I
got to the reception desk, she got up saying, oh
my god, I'm feeling sick, and she walked off. When
(43:10):
we were walking off, me and my wife. I asked
her what happened, and she goes, when you left. The
receptionist asked me who you were and I said, you're
my husband and everything, and she said you married that.
Oh my god, why would you marry that? Not him
or this person that? Oh, I feel sick and my
(43:35):
wife she cried when she got home and I said
to her, PARREI, I experienced this all the time. And
she we used to go shopping and stuff and the
would be like women staring at me, and in India
is very different. Here, it's subtle. In India, they're like
right next to you, like in your face, staring at you.
They'll pull out their phone and take pictures of you
or something. And she used to go up to them
(43:56):
and like, is there something wrong? Like why are you
staring at him? You know? She would just be like
straight up with them. And India is a different beast.
Every time I land in India, I realized that I
am disabled because people start taking their phone out and
taking pictures of me. Even on our wedding day in
the temple, there was a crowd of people going, a
freak is getting married? People need to fucking grow up
(44:20):
and get over shit. Yeah, but to talk about a
good thing, I mean, once all that happened, the good
things that came out of it was now who I
am Now the advocacy journey, I'm on. You know, I've
become a content creator. I have traveled in the last
two years, traveled to thirteen different countries in Europe and
US talking about my condition, my journey and my confidence. Code.
(44:43):
Launched a book which was rejected by five publishers. Now
it's best selling in US, best selling in Canada, but
it was best selling in Australia. How was it rejected?
They just said, they just said, you're not an author,
you don't have an agent. We don't you know eight
grand past eight thousand pound and will publish it for you.
So then I just went and published on Amazon myself
(45:04):
and so over one thousand copies of it, and I've
just started my own podcast channel phenomenally well, you know,
I've done my first two interviews, and yeah, it is
such a great place. And when I left my job,
I didn't know where I'm going to be in two
years time. It's been two years and I'm in. I'm
in a very good place. You know, three hundred and
fifty thousand followers on social media, lots and lots of views,
(45:27):
lots and lots of love, lots and lots of comments,
traveling the world, wrote my own book, launching my podcast,
working in DEI in the NHS. Now, I say, I
don't know where the next two years are going to be,
but it's definitely going to be a ride to watch,
especially with the podcast launching and the book and everything
else that's going on. You know, you know when you travel,
do you do you get stopped when you're traveling a lot,
(45:50):
like going through customs or anything like that. For the passport, Yeah,
the electronic gates don't work with me very well. The
electronic gates don't recognize my face, so that those those
face recognition cameras they recognize my face, and that's always
very very embarrassing. You know, you're standing in a queue
in immigration and you go into the booths where scan
(46:11):
your face and it makes the magnets pick up on
the electronics.
Speaker 3 (46:15):
When you go from they don't but the face recognition,
and a lot of countries have this face recognition now,
and every time, every time I approach one, I'm really
really nervous that the whole queue behind me is going
to now look at me and realize it's not working.
Speaker 1 (46:34):
What's what's your biggest regret? My biggest regret, Well, I
think you're not starting my advocacy sooner. You know. I
wish I'd started doing what I'm doing now a lot
sooner than I have. I hid myself for too too long,
but too too long. My social media was just my
(46:55):
left hand side of my face, but too too long.
I did not accept my neurified rom toosis. Now I
say this is me, this is who I am. I
wish i'd said that. Lots through that and what would
you say? How would you describe yourself in one word? Yeah? Strong?
I think I'm definitely strong because it takes a lot,
(47:17):
But it takes a lot to go through what I
go through on a on a daily basis. But but
I get through it. I get through it with the
belief that it's going to be okay. Well, you know what,
I've really appreciated you coming on and sharing your amazing
journey with me, and I would love to stay in
touch at you in the future to see how you're
going on and thank you. But I I you know what,
(47:38):
I I take my hat off to you, mate, because
you are a survivor and you are strong. Thank you
so much. Thank you. That means a lot. But I
really appreciate you coming on mate, and a good look
in the future with you and your wife. Thank you
so much.
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