Latest / Tom's Hirschsprung's Podcast / Episode 112 - With James Brattoli

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Episode 112 - With James Brattoli · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's podcast, a space where
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Speaker 1: we talk openly about living with Hirshprng's disease. Whether you
0:09
Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
0:22
Speaker 1: tuning in. Hello, and welcome to episode one hundred and
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Speaker 1: twelve of Tom's Hirshbrongs podcast. I am delighted to be
0:51
Speaker 1: joined this morning by James. Good morning, James, good morning.
0:56
Speaker 2: How are you?
0:57
Speaker 1: Yeah, very very good, Thanks so much for for joining me.
1:02
Speaker 1: You are an actor and a bit of a boxer
1:05
Speaker 1: as well a screenwriter, and you also have Hirshprungs as well,
1:11
Speaker 1: So I guess cut it up to you. Really where
1:14
Speaker 1: you want to start the story?
1:17
Speaker 2: Oh yeah, we'll start at the beginning Hirshbrung's disease. I
1:21
Speaker 2: was diagnosed.
1:21
Speaker 1: I have a little bit of notes here, so don't
1:22
Speaker 1: mind me looking away.
1:24
Speaker 2: I was diagnosed with total congenital Hirsprungs disease at three
1:28
Speaker 2: weeks old, so very very early on, had my entire
1:32
Speaker 2: coll in in large intestine plus twenty five centimeters of ilium.
1:36
Speaker 2: We're small intestine resected.
1:38
Speaker 1: By age four, they had.
1:40
Speaker 2: The sober so have pulled through procedure done through some
1:44
Speaker 2: of that as well.
1:45
Speaker 1: I think that's how you say.
1:46
Speaker 2: I don't know how to pronounce it really, but yeah,
1:48
Speaker 2: all of that was by from three weeks old to
1:51
Speaker 2: age six, I had almost twenty surgeries, close to twenty,
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Speaker 2: I think countless procedures. Staying sick for months, three years
2:00
Speaker 2: at a time, it was. It was an awful experience
2:03
Speaker 2: from what I remember mostly.
2:04
Speaker 1: Yeah, yeah, that sounds uh, yeah, sounds pretty pretty horrific,
2:11
Speaker 1: especially as well, I mean three weeks, because I always
2:15
Speaker 1: thought three weeks was quite early to be diagnosed because
2:21
Speaker 1: I was three weeks as well, roughly three weeks, but
2:24
Speaker 1: I've seen that actually most of getting diagnosed within the
2:27
Speaker 1: first forty eight hours, so I guess we were quite late.
2:30
Speaker 1: Mm hmm.
2:31
Speaker 2: Yeah, I definitely had Well, this is coming from what
2:34
Speaker 2: my mom described. Of course I wasn't conscious yet as
2:37
Speaker 2: a human being, but she described it as by week two,
2:40
Speaker 2: I wasn't eating for like six days or something like
2:43
Speaker 2: that at a time, and I was skeletal, super thin,
2:47
Speaker 2: like something I just clearly was not okay, and she
2:50
Speaker 2: I have an older brother who also had her sprongs
2:52
Speaker 2: as well, but he didn't have total I got destroyed.
2:56
Speaker 2: He just had some of it, which was still off.
3:00
Speaker 2: But so she's seen it before and she's like, he's
3:03
Speaker 2: not well, like there's not there's something not right. He's
3:06
Speaker 2: she said, I would wake up from a nap, throw
3:09
Speaker 2: up acid and then just go right back to bed,
3:11
Speaker 2: wouldn't eat, refuse food. So she's like, that's not normal.
3:15
Speaker 2: Rushed me in and she's like, I need someone to
3:19
Speaker 2: see it, like he's not okay. I can like apparently
3:21
Speaker 2: see my intestines like through my abdomen because I was
3:25
Speaker 2: so sunken in and like see them moving around and
3:28
Speaker 2: they were all blocked and it was it was terrible.
3:32
Speaker 2: And so that's why she rushed me in and I
3:34
Speaker 2: had a surgery a week later saved my life.
3:37
Speaker 1: Wow. So you see you have a brother with with
3:39
Speaker 1: hirshprungs up because you would you said, he's not that
3:43
Speaker 1: not that much of the testing infected. Yeah, affected that's
3:47
Speaker 1: some short segment then I take it.
3:49
Speaker 2: Yeah, he just he's four and a half years older
3:51
Speaker 2: than me and he had. He has probably still around
3:54
Speaker 2: fifty percent of his large intestine and colon, so he
3:57
Speaker 2: still has like most of the operating system. I have nothing.
4:01
Speaker 2: So he's like half normal. He still has issues of course,
4:04
Speaker 2: like he does have the disease, but he's more on
4:08
Speaker 2: the normal human.
4:09
Speaker 1: Side I like to describe it. Yeah, Yeah, that's a
4:13
Speaker 1: bit more. He has a bit more that that you too, Yes, exactly.
4:19
Speaker 1: So so with that as well, see having two sons
4:23
Speaker 1: with hirshbruns, was there apart from you and your brother,
4:28
Speaker 1: anything else in the family sort of anybody else that
4:32
Speaker 1: has hirshbrungs. Did it sen sort of come from a
4:34
Speaker 1: long family line or was his? You two that perfected?
4:37
Speaker 1: It was just us.
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Speaker 2: My mom had has like some inkling of like maybe
4:43
Speaker 2: our dad has it like and has had it and
4:47
Speaker 2: just kind of just either denied to get help or
4:50
Speaker 2: whatever it may have been. But she's pretty sure that
4:54
Speaker 2: he did have it somewhere, because apparently the female or
4:57
Speaker 2: the mother carries it like through to us, but they
5:01
Speaker 2: don't have it, so it has to come from the male.
5:05
Speaker 2: I get in some sort of web of that. So
5:09
Speaker 2: she had nothing but then had both of us. I
5:12
Speaker 2: was like one hundred percent accuracy. We has both got
5:14
Speaker 2: it immediately, so I don't know, but I think it
5:17
Speaker 2: comes from the male. So we're but we're still not
5:19
Speaker 2: confirmed on if he has it or had it like physically.
5:23
Speaker 1: So yeah, wow, I mean I know it's was it
5:29
Speaker 1: three three and every four roughly how people with hirsch
5:34
Speaker 1: Brung's are male, so it's it's more. But that's interesting
5:39
Speaker 1: to say that carried potentially through female and then but
5:44
Speaker 1: actually the more people that get it are male, which
5:49
Speaker 1: I mean, I'm fascinated by genetics, absolutely fascinated, and I've
5:54
Speaker 1: done I've spoken to so many people about it, and
5:57
Speaker 1: I still don't understand any of it.
6:00
Speaker 2: Yeah. Yeah, and that's just a rough, very rough research answer,
6:04
Speaker 2: like I don't know the specifics, but that's what I've
6:08
Speaker 2: kind of learned or heard about.
6:11
Speaker 1: Yeah, No, that makes it makes sense. I mean, to
6:13
Speaker 1: be honest, I don't think even through all the doctors
6:15
Speaker 1: I've spoken to, I don't think anybody properly understands it. Yeah,
6:20
Speaker 1: we're getting there. We're definitely further forward than we were,
6:24
Speaker 1: but I don't think anyone really fully fully understands you know,
6:33
Speaker 1: why also why you know, but with you and your brother.
6:38
Speaker 1: Why do you have different types of hirsprungs. Yeah, shouldn't
6:41
Speaker 1: you because your brothers both have the same No, Yeah,
6:45
Speaker 1: so I don't get that either.
6:48
Speaker 2: Yeah, I I that's a good question. Actually I never
6:50
Speaker 2: done of it that way. I just it was just
6:52
Speaker 2: something that I've always understood, like, yeah, my brother has
6:55
Speaker 2: half of it. I got one hundred percent of it,
6:57
Speaker 2: and that's just how it was. But that's a good question.
7:00
Speaker 2: And I don't know why came from the same source.
7:03
Speaker 2: So why did Yeah, why it's I don't know. You're
7:07
Speaker 2: not the only person who asks why. There's lots and
7:11
Speaker 2: lots of us who who just Yeah, I think it's
7:15
Speaker 2: it's such a difficult one because I just don't know.
7:18
Speaker 2: Nobody's got the answer, and nobody can tell nobody can
7:21
Speaker 2: tell you know, you or me or anybody else.
7:25
Speaker 1: Why why did we get hirshbrungs? And when there was
7:27
Speaker 1: nothing else in the family? Yeah, I mean literally nothing.
7:30
Speaker 2: There's no I mean that I'm aware of any like
7:33
Speaker 2: real diseases that run through either side at all. And
7:36
Speaker 2: we just both got one of the worst things, like
7:40
Speaker 2: I don't know, I mean in comparison, Yeah, and one
7:43
Speaker 2: of the rarest obviously as well.
7:46
Speaker 1: It's not as though you know diabetes or asthma or
7:50
Speaker 1: or something else one of the one of the guests,
7:54
Speaker 1: one of the rarest things you can possibly get so diagnose.
8:00
Speaker 1: At three weeks, you said you've had sort of twenty
8:03
Speaker 1: surgeries by aged six. Aged six, Yeah, how many of
8:09
Speaker 1: those do you? I guess do you remember?
8:14
Speaker 2: I only remember the events leading up to some of them,
8:18
Speaker 2: like how I felt when I knew I was going
8:21
Speaker 2: to go get surgery, I think is the only thing
8:23
Speaker 2: that stuck with me, not really remembering the surgery itself.
8:27
Speaker 2: But one particular moment that has always stuck with me
8:30
Speaker 2: is one day it was like a Saturday morning, very
8:34
Speaker 2: very young, maybe three or four, in the midst of
8:36
Speaker 2: all the craziness, and it was like a perfect day,
8:40
Speaker 2: crisp Air. You're like just that perfect childhood son, and
8:44
Speaker 2: like everything's great, and I was finally feeling well after
8:47
Speaker 2: all this stuff going on, and so I was so
8:49
Speaker 2: excited and I was like, I've I actually feel good today.
8:53
Speaker 2: This is this is incredible. And I run down the
8:55
Speaker 2: stairs to go eat breakfast because I'm all hyped, and
8:59
Speaker 2: my Mom's standing by the door with her purse just
9:02
Speaker 2: looking at me, and I yelled. I was like, I'm
9:06
Speaker 2: gonna have high net cheerios like I'm like yeah, like
9:08
Speaker 2: let's eat, Like I'm so excited. And then she just
9:11
Speaker 2: looked at me and was like, we have to go
9:12
Speaker 2: have we have to go to the hospital right now,
9:14
Speaker 2: like you have surgery this morning. And I was just
9:16
Speaker 2: like and I just started bawling. I was my whole
9:19
Speaker 2: world collapsed, and I was like, what do you mean?
9:21
Speaker 2: I feel great? Like I just didn't understand that it
9:24
Speaker 2: was already scheduled, you know, like weeks prior, probably because
9:27
Speaker 2: I had some other issue going on, but I just
9:30
Speaker 2: remember just everything going when I was like, oh, I.
9:36
Speaker 1: Thought I was healthy.
9:37
Speaker 2: I felt so good, and now it's it's over after
9:40
Speaker 2: go to the hospital and it just ruined everything.
9:44
Speaker 1: You know, how do you, I guess, how on earth
9:47
Speaker 1: do you explain that to a four year old because
9:48
Speaker 1: you're like, well, I'm well, why do I need to
9:50
Speaker 1: go to a hospital when I'm well, that's not where
9:52
Speaker 1: I go with Well yeah exactly.
9:54
Speaker 2: I mean I was full energy, but it might have
9:57
Speaker 2: been one of those things where it's like you get
9:59
Speaker 2: that burst of energy before you like don't feel well
10:02
Speaker 2: or something like that, like in the interim energy. Maybe
10:05
Speaker 2: I really don't know. I was so young, but I
10:06
Speaker 2: just remember that very vividly, just being so happy that
10:11
Speaker 2: I felt okay for once and it just was immediately trashed.
10:17
Speaker 1: Yeah. That's yeah, that's just so that's so difficult to explain.
10:21
Speaker 1: It's so difficult, I guess as as a child and
10:25
Speaker 1: a young child as well. I mean, that would be difficult.
10:27
Speaker 1: If you know, if you're ten or twelve or whatever,
10:30
Speaker 1: do you think, well, I'm well, why do I need
10:32
Speaker 1: to go to hospital? But I can't imagine what like
10:35
Speaker 1: at four, what do you think? Actually? You know all
10:39
Speaker 1: of the times that you I mean you said there
10:41
Speaker 1: are the times that you felt unwell, and that would
10:44
Speaker 1: have made sense. Yeah, it felt well, I'll go to hospital.
10:47
Speaker 1: And then the actual day that you're feeling well is
10:51
Speaker 1: the day you go to hospital. Shah.
10:54
Speaker 2: I know, I have no idea how to ask my
10:56
Speaker 2: mom about that, Like, I'm sure it was already scheduled
11:00
Speaker 2: much prior to that, and I just didn't know, because
11:03
Speaker 2: you know, there's so much happening. I'm seeing like eighty
11:05
Speaker 2: doctors a week, and I'm constantly unconscious and then that
11:08
Speaker 2: there's so much happening, I could have just forgotten. But
11:11
Speaker 2: that was just one of the terrible mouths I felt crash.
11:16
Speaker 1: So you kind of sort of just in and out
11:19
Speaker 1: of hospitals and appointments, and I guess, I guess like
11:23
Speaker 1: a lot of people with hirshprungs are. You know, certainly
11:26
Speaker 1: those first few years and possibly after as well. It's
11:29
Speaker 1: different for everyone, but certainly those first few years you
11:34
Speaker 1: kind of in and out and in and out of hospitals,
11:37
Speaker 1: booking surgeries, follow up appointments, all of that stuff. Was
11:43
Speaker 1: that kind of those first few years for you two?
11:47
Speaker 2: Yeah, I missed so much of school. I started way
11:50
Speaker 2: later than everybody else because I was in the hospital
11:53
Speaker 2: fighting for my life all the time. Or I would
11:56
Speaker 2: go to school because I was kind of okay, and
11:59
Speaker 2: then I'd get super ill by the afternoon and't have
12:01
Speaker 2: to go home. So there are a lot of those
12:03
Speaker 2: days as well, just a lot of side effects. My
12:07
Speaker 2: mom explained that I had a lot of infections that
12:11
Speaker 2: would happen post surgeries, just because you know, I'm a
12:15
Speaker 2: baby and a kid. My immune system is already shot
12:19
Speaker 2: as it is, Plus I keep getting opened up and
12:22
Speaker 2: all this like medications and like I'm just getting destroyed.
12:25
Speaker 2: And so my body just was fighting for its life
12:28
Speaker 2: to try to get all this stuff out. And so
12:31
Speaker 2: even when I would have a corrective surgery follow up,
12:34
Speaker 2: it would get infected or I'd get super sick from
12:37
Speaker 2: a virus floating around because I had no defense system,
12:40
Speaker 2: and so that would happen just over and over and
12:42
Speaker 2: over again. I'd come home to recover and I get
12:45
Speaker 2: super sick, and then I wouldn't need a surgery, but
12:48
Speaker 2: I would just get super ill, and then I'd take
12:50
Speaker 2: a week to recover, and then get super sick from
12:52
Speaker 2: a cold, and then get dehydrated and have to go
12:55
Speaker 2: back for fluids. So it was just that over and
12:57
Speaker 2: over and over and over again for years.
13:00
Speaker 1: Yes, I mean under a week to recover. I mean that,
13:05
Speaker 1: you know, usually if if people get ill at at
13:08
Speaker 1: that age, you know, you take maybe a couple of
13:10
Speaker 1: days if you have cold or colfs or you know,
13:13
Speaker 1: some kind of sickness bug. Maybe it might be a
13:15
Speaker 1: sort of forty eight hour job. But a week, I
13:18
Speaker 1: mean a week is it's a long time. Yeah.
13:22
Speaker 2: I was so weak and my mom would have to
13:24
Speaker 2: like nurse me back to health and give me flip
13:26
Speaker 2: gatorades or whatever she could on her own to try
13:29
Speaker 2: to get me back to life before the er if
13:32
Speaker 2: just in case we.
13:33
Speaker 1: Didn't have to go.
13:34
Speaker 2: But it just it would always be too too late.
13:36
Speaker 2: And it was not her father at all. It's just
13:37
Speaker 2: my body couldn't handle it.
13:39
Speaker 1: It was too much, you know.
13:41
Speaker 2: I would just decline very very quickly, and we're like,
13:44
Speaker 2: all right, back to the hospital, let's go to the
13:46
Speaker 2: pic you yeah.
13:48
Speaker 1: Yeah, yeah, I mean it's it's like you said, with
13:51
Speaker 1: the immune system, because we have so much surgery and
13:55
Speaker 1: such a young age. Well, I mean again a caveat
13:58
Speaker 1: this something of us do. Some of us, you know,
14:02
Speaker 1: are quite lucky in inverted commas. They have to pull
14:05
Speaker 1: through and yeah, maybe one other surgery and then that's
14:08
Speaker 1: it for the rest of their life. Some of us have,
14:11
Speaker 1: you know, easily in double figures. Some of us are
14:14
Speaker 1: a lot more so. But I guess the more surgery
14:18
Speaker 1: you have, the harder it's going to be to sort
14:21
Speaker 1: of fight everything in the weaker the immune system is
14:24
Speaker 1: going to be. So yeah, twenty surgeries before the age
14:27
Speaker 1: of six, I can't imagine, you know, how battered the
14:33
Speaker 1: immune system would have been.
14:35
Speaker 2: Yeah, just as as the volume as anything. Like, I
14:39
Speaker 2: as soon as I recoverage, get sick again, and it's like, okay,
14:43
Speaker 2: back to square one. Already lose a bunch of water
14:46
Speaker 2: weight from dehydration. Yeah, I would say from six to
14:51
Speaker 2: fifteen maybe was the pocket of recovery basically of like
14:57
Speaker 2: understanding diets and what I could or couldn't or shouldn't
15:02
Speaker 2: eat like that. That was, I mean, an impossible math
15:06
Speaker 2: equation forever. It still is. Actually, well, I wouldn't say impossible.
15:10
Speaker 2: It's very difficult to see what would affect me, what
15:13
Speaker 2: would give me stomach issues or gastro any issues like that,
15:17
Speaker 2: because it's all messed up down there. And so like
15:20
Speaker 2: six to fifteen was kind of figuring that out. Okay,
15:22
Speaker 2: what is the ideal breakfast for me? How much fluid
15:27
Speaker 2: should I have to feel really good for the day.
15:31
Speaker 2: Oh okay, I can't eat that before bed. That kind
15:33
Speaker 2: of messes me off. So it's constantly evolving with that.
15:37
Speaker 1: Wow. Yeah, you say six to fifteen like it's a
15:41
Speaker 1: short amount of time, it's a decay nearly that is
15:44
Speaker 1: a long time to figure out. Yeah, it was a
15:47
Speaker 1: long time, and I guess like a lot of people
15:50
Speaker 1: in diets and foods that agree with them or don't
15:52
Speaker 1: agree with them. It's trial and error, I guess.
15:57
Speaker 2: Yeah, but it just couldn't figure out the opera equation
16:00
Speaker 2: because it's kind of ever changing, every evolving again.
16:04
Speaker 1: Even to this day.
16:05
Speaker 2: I'm almost thirty two now, I'm still still dealing with that.
16:09
Speaker 2: Like something I'll eat last year all of a sudden
16:11
Speaker 2: just destroys me today for whatever reason, and nothing changed
16:15
Speaker 2: at all. It's the exact same food, the exact same meal,
16:18
Speaker 2: and it just won't agree with me all of a sudden.
16:21
Speaker 2: I know most human bodies do that too with some things,
16:23
Speaker 2: but for me, it's it's like every other month instead
16:27
Speaker 2: of every couple of years. You know, I have to
16:28
Speaker 2: change my diet every two weeks. Sometimes it's just like okay,
16:32
Speaker 2: can I eat that? To try something else? And to
16:35
Speaker 2: keep changing it.
16:37
Speaker 1: That's ridiculous, I mean, like I mean, I have I
16:41
Speaker 1: have heard of obviously, you know, like you said, lots
16:45
Speaker 1: of people have to change diets for various reasons and whatnot.
16:49
Speaker 1: But every every couple of weeks and a bit, I
16:53
Speaker 1: guess the most frustrating thing is that there's no pattern
16:57
Speaker 1: like at least if it was, oh, this is acidic,
17:01
Speaker 1: so I'll, you know, avoid acidic stuff, or this is
17:05
Speaker 1: sugary or whatever it might be. At least at least
17:08
Speaker 1: there's a there's a pattern there. But as anybody sort
17:11
Speaker 1: of medically wise ever sort of said to you, I'll
17:15
Speaker 1: try this or try that, or this is why this
17:18
Speaker 1: happens or this is why that happens.
17:21
Speaker 2: I know, when I was younger, my mom worked with
17:24
Speaker 2: pediatricians and the doctors and surgeons and stuff like that
17:27
Speaker 2: to kind of really work with them closely to give
17:30
Speaker 2: me an optimal diet for the most part, and she
17:35
Speaker 2: kind of overlooked that for a lot of years. But
17:37
Speaker 2: I think once I became an adult, like my own adult,
17:40
Speaker 2: I remembered a lot of it, and I would I
17:42
Speaker 2: would try it and keep doing it, and it would
17:45
Speaker 2: just mess me up. So I was like, I have
17:47
Speaker 2: to change it.
17:49
Speaker 1: And messed me up.
17:50
Speaker 2: I mean like either just a stomach ache or sometimes
17:52
Speaker 2: diarrhea or sometimes acid diarrhea, even from normal fan I'm
17:57
Speaker 2: not talking like I had six cakes and forty cups
18:00
Speaker 2: or something. I mean sometimes it's just like a regular
18:02
Speaker 2: dinner and I would just be messed up. Till two am,
18:05
Speaker 2: and it's like, what did I what happened? Like I
18:08
Speaker 2: just ate this for five years. I don't understand. But
18:11
Speaker 2: in my adult life, I've done my own research. I
18:13
Speaker 2: haven't worked with like a diatrician or something like that personally,
18:17
Speaker 2: but a lot of it's research like what truly helps
18:21
Speaker 2: Hirshprung's disease specifically because it's such a weird thing to have.
18:26
Speaker 2: And I know a lot of oatmeal, like very slow
18:28
Speaker 2: digesting proteins is in high fiber, low sugar is the
18:32
Speaker 2: most common group of things, and even when I've tried
18:36
Speaker 2: that sometimes it doesn't work very well. Currently, I have
18:40
Speaker 2: oatmeal every day with a banana, so they're like double
18:43
Speaker 2: slow acting things for my system, and that works pretty well.
18:49
Speaker 2: I did have eggs and potatoes for a while because
18:51
Speaker 2: I know eggs are very good and potatoes have vitamins
18:54
Speaker 2: to absorb and stuff. But it's it's still just ever
18:58
Speaker 2: changing forever, Like sometimes oh, male will give me ass
19:01
Speaker 2: one day and I have no idea why, and then
19:04
Speaker 2: I just it's every day is a mystery? Really is?
19:08
Speaker 1: It keeps us on those toes? Yeah, but it's but
19:12
Speaker 1: that that does make sense to you have you sort
19:14
Speaker 1: of slow release like the email and that that does.
19:18
Speaker 1: That does make sense, but I guess what doesn't make
19:20
Speaker 1: sense is why it then doesn't work the next day.
19:23
Speaker 2: Yeah. Yeah, I've tried to track, like maybe something I
19:27
Speaker 2: had in between that, or a certain deserve I had,
19:31
Speaker 2: maybe threw it off or something the day before. But
19:33
Speaker 2: my body reacts pretty quickly, meaning like if I have
19:37
Speaker 2: a cake right now, it'll affect me like an hour
19:40
Speaker 2: or two from now. It's not like a normal person
19:42
Speaker 2: where if you eat something on Tuesday and then Thursday
19:45
Speaker 2: you have gas because you're like, oh, I had that
19:47
Speaker 2: salmon the other day. Like, It's not like that for me.
19:50
Speaker 2: It's it's almost instant, to be honest, Like if I
19:52
Speaker 2: eat something bad hour or two later, I'm in the bathroom,
19:55
Speaker 2: like it's it's pretty immediate. So that's why I'm like, Okay,
20:00
Speaker 2: it wasn't the breakfast.
20:01
Speaker 1: Was it the breakfast then?
20:02
Speaker 2: Because I didn't need anything close to that that would
20:05
Speaker 2: have messed me up? Like, I don't know. It's confusing.
20:08
Speaker 2: It just darts too.
20:10
Speaker 1: It's extremely confusing. I mean, harve it. You can kind
20:14
Speaker 1: of see why that makes sense because we have less
20:17
Speaker 1: in testing it was either the more, the more intesting
20:21
Speaker 1: you lose, the the less you have, the faster it's
20:24
Speaker 1: going to travel through. So you know, with normal people
20:27
Speaker 1: it's going to take you know, twenty four hours or
20:29
Speaker 1: whatever you know to travel through, whereas USI, it's going
20:32
Speaker 1: to take a lot shorter amount of times. It's going
20:35
Speaker 1: to have a quicker effect. So that that bit, that
20:37
Speaker 1: bit I kind of I understand. But the whole why
20:42
Speaker 1: things work one day and why things don't work the next,
20:45
Speaker 1: I just I don't know. I can't fathom, And in
20:49
Speaker 1: thirty two years you haven't been able to either. Yeah,
20:52
Speaker 1: it's really weird. I mean, I know it could be trauma,
20:55
Speaker 1: it could be stress, as I know those definitely effect
20:58
Speaker 1: a lot of your balley functions, which I have a
21:01
Speaker 1: ton of, or had a ton of growing up as well,
21:03
Speaker 1: which we can get into later.
21:05
Speaker 2: But you know, even on the days where I'm completely
21:08
Speaker 2: calm and happy, it just messes me up. So I
21:11
Speaker 2: really don't know why I've been tested for everything under
21:14
Speaker 2: the sign a million times and there's nothing else. It's
21:16
Speaker 2: just I don't have anything to break it down or
21:20
Speaker 2: have anything to hold it in, So it's just whatever
21:24
Speaker 2: goes in that's that's what's gonna happen.
21:26
Speaker 1: Yeah, yeah, absolutely, and you did. You did bring up
21:31
Speaker 1: trauma there as well, And I know we wanted to
21:35
Speaker 1: get into that because I have had a look as
21:38
Speaker 1: I mentioned at the Star Actor and Screenwrits, and you
21:41
Speaker 1: have written some some poems that I had a look
21:44
Speaker 1: at as well, especially the one called in a Child.
21:48
Speaker 1: I thought that was really good a lot about sort
21:52
Speaker 1: of PTSD and c PTSD. But what is your sort
21:56
Speaker 1: of understanding, I guess of because everybody when when they
22:01
Speaker 1: talk about trauma, it's such a such a wide spectrum,
22:05
Speaker 1: but sort of what specifically speaks to you.
22:11
Speaker 2: M Mine kind of happened like waves, I would say.
22:19
Speaker 2: So obviously a lot happened to me in childhood that
22:21
Speaker 2: I don't remember at all because I was either too
22:24
Speaker 2: sick or just too young. So a lot of things
22:27
Speaker 2: I learned from my mom explaining it to me, of
22:30
Speaker 2: like this happened to you, You went through this, you
22:32
Speaker 2: had this happen. It was terrible, Like if she keeps
22:34
Speaker 2: it real, she's like, this was absolutely terrible. You went
22:37
Speaker 2: through terrible things. You know this, this hurt, This was that.
22:41
Speaker 2: So it wasn't sugarcoated at all, which I appreciate, and
22:44
Speaker 2: so a lot of it was explained to me. But
22:46
Speaker 2: I do remember a lot of very specific moments that honestly,
22:51
Speaker 2: to this day, I cannot even fully say was reality
22:56
Speaker 2: or a dream because I was just so messed up
23:00
Speaker 2: so much that I can't even really tell which one
23:04
Speaker 2: I actually experienced or not. It's kind of confusing, Like
23:09
Speaker 2: some things I'll bring up my mom won't even really remember,
23:11
Speaker 2: so I'm like, did that even happen or am I
23:13
Speaker 2: just is it just like my brain trying to figure
23:15
Speaker 2: it out or something like I don't know because it
23:17
Speaker 2: was just so terrible, which I know is a thing.
23:22
Speaker 2: But after everything was done, like after six years old,
23:25
Speaker 2: you know, I'm like, fine, Now I had pretty great life,
23:29
Speaker 2: Like I actually like had a lot of fun, Like
23:31
Speaker 2: I would go on trips, I went to school, I
23:34
Speaker 2: had friends, and everything was kind of normal. And I
23:37
Speaker 2: didn't know that anything what trauma was. I didn't know
23:40
Speaker 2: what stress was, I didn't know what anxiety was because
23:42
Speaker 2: I'm just I'm like, I'm better, I'm a kid whatever.
23:45
Speaker 1: And it wasn't.
23:46
Speaker 2: Until I got to maybe eighteen or nineteen where I
23:52
Speaker 2: started to make sense of the world for the first
23:54
Speaker 2: time on my own and get my own perspective and
23:57
Speaker 2: started feeling weird sensations which were like stress and anxiety,
24:02
Speaker 2: and I didn't know what they were. I just felt weird.
24:04
Speaker 2: I was like, whatever, I just don't feel good today
24:06
Speaker 2: or something like that. And then at twenty I think
24:10
Speaker 2: twenty or twenty one is when I had my first
24:12
Speaker 2: experience of like crazy anxiety and depression. And it was
24:17
Speaker 2: basically like everything was unsuppressed for the first time that
24:20
Speaker 2: through my whole childhood, that it just all hit me
24:23
Speaker 2: at once, and I had like existential crisis like great
24:27
Speaker 2: like breathing issues from the stress and anxiety like and
24:30
Speaker 2: nothing happened either. There wasn't an event that happened at
24:33
Speaker 2: that time either. It just all opened up and I
24:36
Speaker 2: just felt everything that I went through for so many years,
24:39
Speaker 2: I think, and I was like, holy crap, like I
24:43
Speaker 2: feel terrible, I can't sleep, I don't want to do
24:47
Speaker 2: anything anymore. I want to tell everybody to get away
24:49
Speaker 2: from me. Like I became very sour and mean, and
24:53
Speaker 2: I was just I didn't know what it was when
24:55
Speaker 2: it all It was really was like the PTSD and
24:58
Speaker 2: the trauma coming out that I just kicked under the
25:02
Speaker 2: rug for so many years and so and pretty much
25:05
Speaker 2: ever since then twenty sixteen to now is has been
25:09
Speaker 2: trying to unravel all that straight Wow.
25:14
Speaker 1: I mean, but that makes total sense though, I mean,
25:20
Speaker 1: because what can you do one, two, three years old? Whatever?
25:25
Speaker 2: You know?
25:26
Speaker 1: What? Well, how how can you make sense of the
25:33
Speaker 1: amount of complicated stuff that is going on? And and
25:38
Speaker 1: I guess one of the other big things as well
25:41
Speaker 1: as the surgery. When we talk about surgery, there's a
25:46
Speaker 1: I think there's a huge difference between you know, like
25:49
Speaker 1: ankle and knee surgery and stomach surgery. Stomach surgery is
25:54
Speaker 1: so much more invasive. And again from the research and
25:58
Speaker 1: the people I talked to, there is a lot of
26:04
Speaker 1: links between gut health and mental health, brain health, huge amounts.
26:11
Speaker 1: So I think, again I can't quote a percentage or
26:15
Speaker 1: how much or whatever, but if you have a lot
26:18
Speaker 1: of surgery on your stomach, I think there has to
26:22
Speaker 1: be something where that is going to impact on your
26:27
Speaker 1: mental health as well. I think it has to. And
26:32
Speaker 1: also you said I'd sort of swept under the rug,
26:35
Speaker 1: but again, what else could you do at six? Like,
26:40
Speaker 1: what else were you going to do? Are you going
26:42
Speaker 1: to sort of, you know, five or six years old,
26:45
Speaker 1: start researching, you know, trauma and Pete. Of course you weren't.
26:50
Speaker 1: So it does. And I think again, definitely not the
26:56
Speaker 1: only person I've spoken to about who has hirshprungs who
27:00
Speaker 1: everything comes back, and it happened for me as well.
27:04
Speaker 1: But everything comes back at later stage and there is
27:08
Speaker 1: no like you said, there's no time where it comes back.
27:13
Speaker 1: It's not at twenty two. This will all come back. Oh,
27:16
Speaker 1: it might be at fifteen, it might be at thirty five,
27:19
Speaker 1: it might never who knows, you know, but it's it does.
27:27
Speaker 1: You know, it does make sense that it all these
27:31
Speaker 1: things that you did put away right for the right reasons.
27:36
Speaker 1: It does. It does, unfortunately sometimes pop back, and that
27:42
Speaker 1: I mean, that's it's very difficult to make sense of hirshprung's,
27:48
Speaker 1: even as an adult to kind of go, yeah, especially
27:52
Speaker 1: the whole waime type of thing as well. I guess
27:56
Speaker 1: you've been there through that a bit as well.
28:01
Speaker 2: Yeah, a lot of It's there are some days still,
28:04
Speaker 2: I mean where I'm just like, if I was just
28:06
Speaker 2: a normal person, I would be able to do this,
28:09
Speaker 2: this and this or this would be so much easier
28:11
Speaker 2: I wouldn't have to deal with that there. But it's
28:13
Speaker 2: very few and far between. It's not every day at all,
28:15
Speaker 2: But that does happen a lot. That's why I wrote
28:18
Speaker 2: that that poem. I was just you know, sometimes I'm
28:20
Speaker 2: just like, dude, why, like this sucks? Like I just
28:23
Speaker 2: want to eat and then hang out and I have
28:26
Speaker 2: to go to the bathroom forty eight times, Like sometimes
28:29
Speaker 2: it gets really really frustrated.
28:31
Speaker 1: But again, it's only it's very it's.
28:33
Speaker 2: Just sometimes, but it does happen. Yeah.
28:35
Speaker 1: But but it makes sense as well, because there's there's
28:39
Speaker 1: in a lot of Hirschbrung's circumstances, there is no rhyme
28:43
Speaker 1: and reason too, certainly, not that we've we've found. I mean, yes,
28:47
Speaker 1: there are some people obviously their parents might have had it,
28:50
Speaker 1: or their aunt and uncle may have had it or whatever,
28:53
Speaker 1: so you can kind of trace it back and say, okay,
28:57
Speaker 1: well I got this because it's in my bloodline or whatever.
29:01
Speaker 1: But for us, you know, it just isn't, you know,
29:04
Speaker 1: And we're that one in five thousand or whatever the
29:07
Speaker 1: figure big, you know, and and it's and it is
29:13
Speaker 1: just bad luck, I guess, and it's and it's so
29:17
Speaker 1: difficult because I guess as humans we want to almost
29:22
Speaker 1: quantify stuff and sort of qualify things and say, well,
29:26
Speaker 1: this happened because this happened, and this happened. But sometimes
29:30
Speaker 1: we can't. And I think that that's one of the
29:32
Speaker 1: things I think that takes a long time to to
29:37
Speaker 1: it because you just have to accept it, I guess
29:39
Speaker 1: in the end, because you can't qualify it. You can't say,
29:43
Speaker 1: you know, this is this and this is why this happens.
29:47
Speaker 1: And it's really difficult to just say, well it happened.
29:52
Speaker 1: It's just yeah, it's just it's incredibly incredibly tricky, I
29:57
Speaker 1: would imagine, but it's but it does make sense, and
30:02
Speaker 1: it does make sense that with and again it's not
30:05
Speaker 1: just necessary with hirshbrungs, but I guess with all chronic
30:07
Speaker 1: illness as well, that feeling of well, I wish I
30:10
Speaker 1: was just normal whatever normal is. I think we all
30:14
Speaker 1: have a picture of what normal is, but is anybody
30:17
Speaker 1: normal really it's really just like I don't I don't
30:24
Speaker 1: know what I don't know. And I guess that the
30:28
Speaker 1: other thing as well, when it comes to hirshprungs, because
30:32
Speaker 1: of the times we are or most of us are diagnosed.
30:38
Speaker 1: We don't know any different, I guess is the other thing.
30:42
Speaker 1: So we've always had this thing that nobody's ever heard
30:45
Speaker 1: of and nobody can ever spell. So it's I guess
30:51
Speaker 1: that's possibly part of it as well. Is that what
30:53
Speaker 1: you think?
30:53
Speaker 2: Or no, yeah, I mean yeah, definitely. That is also
31:00
Speaker 2: of one of the frustrating things where it's like I
31:02
Speaker 2: haven't had a normal day ever, Like I can't even
31:07
Speaker 2: compare like hearing my I have lived with four roommates
31:11
Speaker 2: with two of them are my brother and my sister
31:12
Speaker 2: in law, and uh, like they talks at dinner and
31:16
Speaker 2: they're like, yeah, I didn't go to.
31:17
Speaker 1: The bathroom for like two days. It was so weird.
31:18
Speaker 2: I'm like I can't even pretend to come compute that
31:22
Speaker 2: in my neurons, Like if I don't go in a
31:26
Speaker 2: couple hours, you got to take me to the hospital.
31:28
Speaker 2: Like I don't even know, Like that's so not normal
31:32
Speaker 2: to me. I can't even pretend to understand that. And
31:36
Speaker 2: they're just like, yeah, I was weird, just had like
31:37
Speaker 2: a something weird. I'm like, how are you casual about that?
31:40
Speaker 2: That's so not like I'm like I'd be dead.
31:43
Speaker 1: If I didn't go for two days. I don't understand. Yeah, weird. Yeah,
31:48
Speaker 1: I mean it would be yeah, I've like been too
31:51
Speaker 1: graphic into it, but yeah, it would be bad.
31:54
Speaker 2: It would be like bye, yeah, I mean that's how
31:57
Speaker 2: I got diagnosed. I didn't go to the bathroom for
31:59
Speaker 2: like ever, and my own like, what the heck is
32:01
Speaker 2: going on? Like shouldn't you have gone every five hours?
32:03
Speaker 2: Like I didn't go for like a bunch of days.
32:06
Speaker 2: But it's just not normal, no, no.
32:09
Speaker 1: But but for everybody else, it's kind of you know,
32:14
Speaker 1: they don't think about their stomach, or they don't think
32:16
Speaker 1: about their digestive system or because it just works and
32:20
Speaker 1: it's you know whatever. But yeah, I guess with Hirshprung's
32:24
Speaker 1: we kind of we kind of have to. Yeah, it's
32:28
Speaker 1: always on the forefront of the mind for everything, Yeah, travel, diet, sleep, everything. Yeah,
32:34
Speaker 1: most definitely, most definitely. I'd like to if I may
32:39
Speaker 1: talk a little bit about about acting and screenwriting as
32:43
Speaker 1: some that we mentioned right to the very beginning. How
32:48
Speaker 1: because again I don't know whether it's just Hirshprungs, but
32:51
Speaker 1: I meet a lot of Hirshbrungs slash actors. There's quite
32:54
Speaker 1: this I mean, I don't know how many of interviews,
32:56
Speaker 1: probably about five or six something like that. I don't
33:00
Speaker 1: know whether it's a Hunhsprungs thing. I don't know whether
33:02
Speaker 1: it's because we go through a lot of hardship. Therefore
33:05
Speaker 1: it's a lot of we can we could talk about
33:08
Speaker 1: a lot of stuff, but it seems to be the
33:10
Speaker 1: way it is. How did you how did you get
33:13
Speaker 1: into acting?
33:16
Speaker 2: My take on the thing that you just mentioned before
33:19
Speaker 2: that is that because we have so many well most
33:22
Speaker 2: of us have so many surgeries, and our audomens very weak,
33:26
Speaker 2: and we are weak, you can't do a lot of
33:29
Speaker 2: aggressive things in your early life. Like I couldn't play
33:32
Speaker 2: football because if I got tackled, it could have ruptured
33:34
Speaker 2: the seams of my stitches and stuff. I would have
33:37
Speaker 2: just blot out and died. So there were things like
33:39
Speaker 2: that I just literally could not do. And so there's
33:42
Speaker 2: kind of a way of like, Okay, what can I
33:44
Speaker 2: do that's enjoyable, but that's not going to hurt me
33:48
Speaker 2: further or like keep me sick or something like that.
33:50
Speaker 2: And so one of the only things I could do
33:52
Speaker 2: was basketball, because you can't really get tackled or punched
33:57
Speaker 2: doing that. It's a very aggressively athletic sport, but that's healthy.
34:01
Speaker 2: So I kind of picked up basketball because I wouldn't
34:04
Speaker 2: get hurt, and I played actually for seventeen years competitively.
34:08
Speaker 1: I wanted to be in the NBA.
34:09
Speaker 2: That was my first dream because that was just one
34:12
Speaker 2: of the only sports I could do without getting hurt
34:14
Speaker 2: with my abdomin. But then acting came around when I
34:18
Speaker 2: was around twelve. I think my mom kept watching I'm
34:21
Speaker 2: a huge Jim Carrey fan. That's a huge thing to
34:23
Speaker 2: know about me. He's like my top the top person
34:27
Speaker 2: like that inspires me. And my mom kept watching Dumb
34:31
Speaker 2: and Dumber over and over again. But I didn't know
34:33
Speaker 2: it was Dumb and Dumber yet. I just saw this
34:34
Speaker 2: movie and she wouldn't let me watch it because it
34:37
Speaker 2: was highly inappropriate and really ron She and like, she's
34:40
Speaker 2: just like, you can't watch it until I'll let you
34:42
Speaker 2: do it. At thirteen, you'll be old enough ish to
34:45
Speaker 2: where it won't be like illegal, you know. So she
34:48
Speaker 2: had me weight and I just kept hearing her. My
34:52
Speaker 2: brother laughed so hard at whatever was happening, and I
34:55
Speaker 2: just didn't understand. I just wanted to see it. I'm like,
34:58
Speaker 2: what are you watching that is so enjoyable? You're laughing
35:01
Speaker 2: so hard, you're like cry laughing. And so finally I
35:04
Speaker 2: watched I like snuck like to the side of the
35:07
Speaker 2: couch and was sat there and looked up at the
35:09
Speaker 2: TV and I saw the scene of them.
35:12
Speaker 1: Have you seen them never?
35:13
Speaker 2: By the way, yes, okay, so make sure the scene
35:16
Speaker 2: when they're in the van with the gas man, like
35:18
Speaker 2: the antagonist, So that scene when they're driving with him.
35:22
Speaker 2: That's the first thing I saw ever of that movie
35:25
Speaker 2: was that scene. And what I noticed so immediately was
35:29
Speaker 2: this guy, Jim Carrey, being absolutely ridiculous and loud and
35:35
Speaker 2: making faces and doing this on a public scale, because
35:40
Speaker 2: I understood, like, okay, this is a movie. Millions of
35:42
Speaker 2: people are seeing this guy do this thing, and there's
35:46
Speaker 2: cameras like he's just going crazy on camera, like he
35:49
Speaker 2: has no shame. It just blew my mind. Someone can
35:53
Speaker 2: do that as a profession, because growing up I was
35:57
Speaker 2: that I made faces. I was making I would do
36:00
Speaker 2: acts on my own just to kind of probably a
36:03
Speaker 2: way of coping with all the pain was just comedy.
36:05
Speaker 1: So I would just be a wacky, silly.
36:07
Speaker 2: Kid, high energy doing voices yelling, and then I saw
36:10
Speaker 2: someone do it on such a big scale and it
36:13
Speaker 2: just like affected my soul. I was like, that's something
36:17
Speaker 2: that you can do, Like that's that's crazy, Like he's
36:21
Speaker 2: just he's just.
36:21
Speaker 1: Being crazy on camera. He's just yelling doing faces. I'm like,
36:26
Speaker 1: I do that.
36:27
Speaker 2: And so that inspired me so much and I was like,
36:30
Speaker 2: I'm doing that, Like that's it. So Jim Carrey love
36:34
Speaker 2: it wor well.
36:35
Speaker 1: To be honest, there's not many better that you can follow.
36:39
Speaker 1: I mean, if you're going to pick someone, go for
36:41
Speaker 1: the best. Yeah, no, that's fantastic. I mean what a
36:46
Speaker 1: what a start though, I mean, that's such And then
36:50
Speaker 1: kind of from from there, I asked you sort of
36:55
Speaker 1: kept the acting and moved a little bit more into
36:57
Speaker 1: screenwriting as well. Is that correct.
37:00
Speaker 2: Yeah. I did acting for quite a bit of years.
37:03
Speaker 2: I think it was like seven or eight years by
37:05
Speaker 2: that time. I started in twenty thirteen officially like actually
37:09
Speaker 2: being on sets and like being an at extra and
37:11
Speaker 2: stuff like that, and fell in love with it and
37:14
Speaker 2: like just being on set. I didn't even care if
37:16
Speaker 2: I got screen time. Just being there was amazing to me.
37:19
Speaker 2: I love the atmosphere, like it just felt so magical
37:22
Speaker 2: or mystical to me, it was so awesome. I didn't
37:25
Speaker 2: even care what was happening or if I got cut.
37:28
Speaker 2: I was like, just stepping on here.
37:29
Speaker 1: It is awesome.
37:30
Speaker 2: And then over the years I got some pretty cool opportunities,
37:33
Speaker 2: but then it kind of died out and I got
37:36
Speaker 2: I wouldn't say frustrated, but I was like, I've never
37:39
Speaker 2: tried writing, and I saw this clip of Steve Martin
37:42
Speaker 2: explained that a great way to keep up your creative
37:45
Speaker 2: flow and like your juices is to write if you're
37:49
Speaker 2: an actor, because you're writing lines and you're writing scenes
37:53
Speaker 2: that you would perform, so it's a good way to
37:55
Speaker 2: keep it going. I was like, all right, I guess
37:57
Speaker 2: I'll try, and I just started writing some stupid scres
38:00
Speaker 2: of just I don't know, my friends and I in
38:03
Speaker 2: situations or something, just to kind of understand how to
38:06
Speaker 2: write something. And then I just fell in love with that.
38:09
Speaker 2: I was like, this is amazing. I can write whatever
38:11
Speaker 2: I want. I can be detailed, I can be wacky,
38:13
Speaker 2: I could be crazy, I can change the names whenever,
38:17
Speaker 2: and just that process was amazing to me. So then
38:19
Speaker 2: I stuck with that for the next few years.
38:22
Speaker 1: I love it. I love it. I mean, because that's
38:25
Speaker 1: the thing. It's it's you can there are no rules
38:29
Speaker 1: and boundaries when you when you right, you can be
38:32
Speaker 1: as creative as you want, you know. And that's and
38:35
Speaker 1: like you said, you know, you can draw a lot
38:38
Speaker 1: off off real life when it comes to Ashbrugs if
38:42
Speaker 1: you want to talk about you know, the things that
38:45
Speaker 1: don't happen to other people but happen to us. And
38:50
Speaker 1: I guess that not necessarily, you know, writing about surgeries
38:53
Speaker 1: and whatever. But you can be as creative and you
38:56
Speaker 1: have as much creative license and freedom, I guess is
39:00
Speaker 1: as you wish.
39:01
Speaker 2: Yeah, And that's that's kind of where it transitioned to poetry.
39:05
Speaker 2: I don't know if I jumped the gum there if
39:06
Speaker 2: you're an ask, but uh, but the poetry is that
39:09
Speaker 2: I felt that I had so much to say, but
39:12
Speaker 2: I didn't want to. I didn't want to make a comedy.
39:14
Speaker 2: I was like, I really want to say what happened,
39:16
Speaker 2: Like I want to say what I felt for real
39:19
Speaker 2: and like how terrible it was as a way of
39:22
Speaker 2: like catharticism, Like I wanted to really make it raw
39:26
Speaker 2: and explain that this was terrible and I had no
39:29
Speaker 2: fun and I was traumatized and in pain, so I
39:33
Speaker 2: didn't want to I didn't want to make it a
39:35
Speaker 2: comedy anymore. I'd be like, yeah, I had surgeries and whatever.
39:37
Speaker 2: I was like, no, this sucked, Like yeah, you know,
39:40
Speaker 2: like I had a terrible life for a long time,
39:43
Speaker 2: you know. So that's where I kind of did poetry
39:45
Speaker 2: because poetry is completely free form. There are zero rules
39:50
Speaker 2: with that. You can make it shapes and numbers if
39:53
Speaker 2: you wanted it too, there's there's nothing, and so I
39:56
Speaker 2: love that freedom of it, and I just started writing,
39:59
Speaker 2: did like twenty forms in two weeks or something like that,
40:02
Speaker 2: and just get it all out. Yeah.
40:05
Speaker 1: Yeah, that's brilliant. I mean there's one in particular I
40:09
Speaker 1: think that's that's excellent, called in a Child. If anybody
40:12
Speaker 1: get gets an opportunity to read that, I mean they
40:15
Speaker 1: are when you say short poems, they are really short poems,
40:19
Speaker 1: really short poems. So it's it's not going to take
40:22
Speaker 1: up a lot of your time to read it. But
40:25
Speaker 1: if anyone gets a chance, please please do because I
40:27
Speaker 1: think that's that's a wonderful explanation of things that you've
40:35
Speaker 1: been through. I really really like that one really do.
40:40
Speaker 2: That one actually got published by a publisher in twenty
40:43
Speaker 2: twenty four, I think, or early twenty twenty five.
40:48
Speaker 1: Yeah, fantastic, that's brilliant. I mean, I think it's an
40:51
Speaker 1: excellent way of describing well everything that we spend the
40:54
Speaker 1: last forty minutes. So there's the trauma, the PTSD, the
40:58
Speaker 1: surgeries and all sorts. But no, I think I think
41:03
Speaker 1: well worth of read those ones? Where can people find them?
41:09
Speaker 2: All of my I only have Instagram and TikTok currently
41:13
Speaker 2: I jagged about everything else. It's just under my name.
41:16
Speaker 2: James were totally all one word J A M E,
41:19
Speaker 2: S B R A T t O L I on
41:22
Speaker 2: both of us, I do.
41:24
Speaker 1: What channel, Sorry, go ahead, I'd say, well, well worth
41:29
Speaker 1: a read if anyone has a spare five minutes.
41:32
Speaker 2: Yeah. Yeah, they're very short to the point. It's why
41:34
Speaker 2: I wrote like thirty of them, because they're just all
41:36
Speaker 2: separate thoughts. I didn't want to do run on like
41:38
Speaker 2: two page things, which I could have done, but I
41:41
Speaker 2: was like, I'm just gonna get the terrible stuff out
41:43
Speaker 2: in a few sentences and make it harsh and move on.
41:47
Speaker 1: Fantastic and and your your TikTok account is also well
41:50
Speaker 1: worth the follow that I've seen as well. But there's
41:53
Speaker 1: a lot of if you, if you're very into sort
41:55
Speaker 1: of funny little again short little clips, fuddy tiktoks, please.
42:00
Speaker 2: Give Joseph follow because they're good. Yeah, that's just a
42:03
Speaker 2: big outlet for me really to kind of cope with life. Really,
42:07
Speaker 2: that's why they're just all over the place. There's not
42:09
Speaker 2: really a set anything on there.
42:12
Speaker 1: Foot.
42:13
Speaker 2: Yeah, it's whatever comes to my mind or if I'm
42:15
Speaker 2: stressed or even happy. I'm just like, I'm just gonna
42:17
Speaker 2: make something whenever post it.
42:20
Speaker 1: I love it. I love them. I think everyone needs
42:23
Speaker 1: some sort of outlet, whether it's something creative or tiktoks
42:28
Speaker 1: or whatever it may be. I think it's absolutely brilliant
42:31
Speaker 1: and just as we as we wrap up here in
42:33
Speaker 1: terms of I talks about acting, talks about screenwriting, and
42:37
Speaker 1: talked about lots of surgeries and social media. But in
42:42
Speaker 1: terms of sort of the future for you, are you
42:44
Speaker 1: working on anything now? Have you got anything sort of
42:47
Speaker 1: in the pipeline for the future.
42:49
Speaker 2: Yeah, I've been writing very slowly. I've been writing a
42:53
Speaker 2: book and an autobiography more specifically about my experience with
43:00
Speaker 2: her shrungs and just my life through all the traumas
43:03
Speaker 2: and everything through my point of view. So I wanted
43:05
Speaker 2: to explain it again, make it super raw and just
43:10
Speaker 2: straight up to the point exactly how I felt when
43:13
Speaker 2: I was thinking during certain times that I remember it's
43:17
Speaker 2: basically all about the bad es sexually. I know a
43:21
Speaker 2: lot of great things did happen in my life, but
43:23
Speaker 2: I really wanted to showcase the just not fun part
43:26
Speaker 2: about like I just a lot of it was just
43:30
Speaker 2: to get it out and kind of work it out
43:31
Speaker 2: in my brain. But also I just don't like sugar
43:35
Speaker 2: coating anything personally. I like, even if I'm at a job,
43:40
Speaker 2: I want someone to correct me.
43:41
Speaker 1: Just correct me.
43:42
Speaker 2: Don't be like, well there's no just tell me I
43:45
Speaker 2: messed up and then I can fix it. So I
43:48
Speaker 2: wanted to write something that's just very raw, to the
43:50
Speaker 2: point like this sucked, this hurt, this was terrible. I
43:54
Speaker 2: wanted this. I didn't like this, but I tried the nuance.
43:59
Speaker 2: It is in like an actual book form as well,
44:01
Speaker 2: but that I've been working on for a very long time.
44:05
Speaker 2: But honestly, it's just really hard to write it emotionally.
44:10
Speaker 2: I think is the thing that's stopping me every time,
44:12
Speaker 2: all right, Like, oh I should talk about that, I'll
44:14
Speaker 2: start writing it. I'm like, oh God like this, Oh man,
44:18
Speaker 2: I gotta go outside. I just it's hard. So but
44:21
Speaker 2: that's something I really do want to complete in this life.
44:25
Speaker 1: So no, it'd be good. It'll be uh, it'd be
44:28
Speaker 1: well worth ever even that comes out. But it makes
44:29
Speaker 1: absolute sense that you say he's gonna be Yeah, as
44:33
Speaker 1: we use that word again, traumatizing, Sure, it's it's you know,
44:37
Speaker 1: it's not it's not difficult to see why why that's
44:42
Speaker 1: going to take a while. Yeah, yeah, that's a tough one,
44:46
Speaker 1: but it's uh, it's.
44:47
Speaker 2: Called the working title is from Tragedy to Tragedy. Uh yeah.
44:52
Speaker 2: So it's just even the title is not very exciting.
44:57
Speaker 1: At least it's not false advertizing at least. See you know,
45:00
Speaker 1: if you open that book, it's not gonna be all smiles.
45:03
Speaker 1: At least people know that.
45:04
Speaker 2: Yeah, yeah, exactly. It was like the classic you know,
45:07
Speaker 2: the tripe is just like your tropes. Sorry, is like
45:10
Speaker 2: from tragedy to you know, bliss or like from horrible
45:13
Speaker 2: to loving life. And I'm like, no, this isn't this
45:16
Speaker 2: wasn't great. It's like, yeah, but it's again, it's just
45:20
Speaker 2: about that Trump mainly, not my entire life. It's mainly
45:25
Speaker 2: about that terrible time. So I don't want people to
45:28
Speaker 2: think like I just hate my life today, but it's
45:30
Speaker 2: it's more of that time.
45:32
Speaker 1: This was seth hewick. But thank you so so much
45:35
Speaker 1: for coming on. It's an extraordinary story. And obviou see,
45:41
Speaker 1: I wish you all the best with the book, with
45:43
Speaker 1: the acting, screenwriting, and yeah, and then whatever else you
45:47
Speaker 1: want to do in your future.
45:48
Speaker 2: Yeah, thank thank you for bringing me on and reaching out.
45:52
Speaker 2: And I appreciate what you're doing because again it's in
45:54
Speaker 2: your profile, but people don't know it's it's one in
45:56
Speaker 2: five thousand people are born with it. I looked it
45:59
Speaker 2: up again to make sure it's actually more than leukemia.
46:01
Speaker 2: Leukemia is one in fifty k, and yet no one
46:04
Speaker 2: really knows what the heck Hirshprungs is at all, even doctors.
46:08
Speaker 2: So it's awesome that you're trying to reach out with that.
46:12
Speaker 1: It's awesome my pleasure. Thank you so much. Yeah, thank
46:15
Speaker 1: you very much, Ron, Thank you for listening and being
46:20
Speaker 1: part of this growing community. If you have enjoyed the episode,
46:23
Speaker 1: don't forget to subscribe, leave a review, and share it
46:27
Speaker 1: with someone who might need it. You can connect with
46:29
Speaker 1: us on social media via Instagram, Facebook, and TikTok under
46:33
Speaker 1: the name Tom's Hirshprung's Podcast. See you next week.