Life Uncut - Life in a Cult and a Devastating Diagnosis - Uncut with Megan Marx

Episode Date: February 6, 2024

Hey lifers!Today we are joined by the wonderful Megan Marx!We could have done an episode for each of the really interesting parts of Megan's life.She grew up in a cult, was married at 18 and divorced in her early 20s. She was one of the first bisexual people we ever saw on our screens in Australia & it wasn't exactly smooth sailing.Megan also speaks about being diagnosed with spinocerebellar ataxia (SCA6), a rare inherited neurological condition that progressively affects movement. She talks about being hyper aware of her own mortality and how the diagnosis has changed the way she lives her life. Megan speaks about the different considerations she now has when she dates, and how she felt explaining the diagnosis to the people she donated her eggs to.  If you have an question please send it on it to life uncut podcast on Instagram hereJoin us on tiktok Or join the facebook group here Tell your mum, tell your dad, tell your dog, tell your friend and share the love because WE LOVE LOVE! xx          See omnystudio.com/listener for privacy information.

Life Uncut acknowledges the traditional custodians of country whose lands were never ceded. We pay our respects to their elders past and present. Always was, always will be Aboriginal land. This episode was recorded on Darug Walamutta land. Hey guys and welcome back to another episode of Life Uncut. I'm Brittany. I'm Laura. And today, I feel like, is a very special interview. Now, I feel like we do say that all the time, don't we?

We're always like, this is super special, we're super pumped about this, but it really is because we're interviewing a wonderful Australian woman named Megan Marks. Now, Megan is actually a friend of mine because we did a TV show together last year. We did the Challenge Australia, which you may or may not watch, chances are you didn't watch it. We were basically put in a house together. How were the ratings on that one for you? I don't even know.

I didn't watch it. It was like a big brother kind of house where you like, you know, mix with Survivor a little bit. It was a weird thing, but basically for like a month, Megan and I were together in this house with no connection to the outside world. You didn't know what was going on, very much like The Bachelor. So we really got to know each other on a deeper level there because you talk all day. You genuinely are present with people in your life, which was probably my favorite thing about it no phones no news no phone calls outside but you also might know Megan from our tv screens on another tv show because she was on Richie Strawn's season of The Bachelor and she was probably

actually no she was she was the first bisexual woman that we saw on our screens and if you remember that time if all of you at home know what I'm talking about because Megan left the show and she ended up being in a relationship with another female contestant afterwards the scrutiny that she faced around that time and the public backlash was truly horrific. Well Megan ended up in a relationship with Tiffany who was also a contestant on Richie's season and I think there was so much speculation as to whether it was a real relationship as to whether it was just for publicity like people honestly couldn't fathom or get their head around the fact that these two women were together and also it was just like the point of gossip within media for so long and I

think the way in which a bisexual relationship was viewed then is so vastly different to how it is viewed now on reality TV. But I mean, I have to admit when Brit said that she really wanted to interview Megan and her story, which is incredible. Her story from the time that she was born and to where she's at now is an incredible life story. I had my own biases around it because I didn't know Megan apart from watching The Bachelor myself. And so I had this perceived idea around who she was I wasn't sure as to whether I wanted to do the interview and Brit you very much sort of said that I mean you had a personal relationship with her but you really spoke about her experience what she grew up in as a child she grew up in a cult it is fascinating but also it really makes

you question this idea of judging a book by its cover and I am so grateful that I got the opportunity to interview her she's incredible the things that she's been through and also her resilience is something that shines through in this episode. And I'm so glad that you listened to me on that aspect, Laura, but apart from just, you know, her truly incredible story, which does involve growing up in a cult, it does involve getting married at the age of 18 and then getting divorced again, going on these TV shows. She gives a really fascinating insight into what that life looks like, but there's another layer to her story and it was what really drove me to do this interview. So Megan has recently been diagnosed with a neurological condition called

spinocerebellar ataxia. And we are going to speak about it, so I'm not going to get too much into it, but it's basically a condition where she is going to deteriorate and she doesn't know how quickly. And this idea of knowing your mortality, but not knowing when and not knowing how fast it's coming. And I guess I felt like I had this little connection because she started to notice some symptoms when we're in the house together for this TV show so she didn't have that diagnosis then but there are a lot of little things that we would laugh about and now it's horrible that we laughed about it but you know her balance would be off on a lot of activities and things like that and different memory and she couldn't find a word sometimes and it wasn't enough to be alarming at

all which is why we would laugh about it and that was turns out the start of this this condition and I really wanted to give Megan the space to talk about that and educate people on what she's going through. Yeah and I guess the other thing that we touched on like we said there's so much but Megan also very generously donated her eggs to a couple to have a baby and so when you found out that you have a genetic condition and it is a terminal genetic condition in the long run how do you then grasp with the fact that this generous act of kindness that you did where you gave your eggs to someone could also then have implications for them as well. There's so much to this we hope that you enjoy the episode and it truly was such a privilege to interview Megan.

Welcome officially to Life Uncut. Thank you for having me. You have had so many pivotal and interesting things happening in your life over the last little bit. So many of them which we're going to unpack and get into. But before we get into any of the serious stuff, we start every episode in the same way. And that is without accidentally unfiltered stories. Your most embarrassing story, which you just said you have a good one. You're like, I have so many, but I picked out the one that is possibly the most humiliating. I was actually thinking back recently to when I first started dating after my divorce

and I had come out of kind of like a semi-cult at the time. And so I'd moved to the city and like I was studying full-time, working full-time. I didn't know anyone because I had no social circle because I was sort of excommunicated from the church. And I'm single. I start dating and I started going to this yoga studio, which I wasn't allowed to do in the church either. Yoga was the devil and this really hot guy comes up next to me and like you know he's doing yoga doing all the moves next to me I'm like oh this is great and he starts chatting to me and he's like hey do you want to just like come to a work event with me and I'm like oh I don't know anyone here it's a bit weird like going as a date to a work event but yeah like I'll yeah sure why not I was in my yes

era so I get dressed up like I put makeup on and I'm like feeling all nervous going to going with this hot guy to this work event where I don't know anyone anyway so I walk in and there's like people on stage clapping and I'm like oh my gosh and singing and like all wearing suits and I'm like I've just entered into another you know this is a church event I think is this what work is for is is he a pastor, is he a preacher? And I walk in, the first thing he does is introduce me to his girlfriend. And I'm like, what the fuck is going on? And I realized it's one of those multi-level marketing schemes. It's like a pyramid scheme. It's a pyramid scheme. So I've come along thinking that I'm going on a hot date and he's introduced me to his girlfriend and I'm like, how am I going

to get out of this and what do you know another girl ends up coming thinking she's also his date and we're standing there me this guy his girlfriend and me and the girl end up just leaving on our own but it was pretty kind of embarrassing for me thinking I was like this is gonna be my first date after my divorce and it was a pyramid scheme that you signed up to cannot possibly be an effective way of signing up people because like if everyone's arriving thinking that they're on a date who is signing up to be part of this pyramid scheme well it was like him and his girlfriend knew what was going on too like his girlfriend was like you know like trying to get signups through her hot boyfriend well you're more likely to get the signups if you're

a smoke show for sure whatever I'll do it Megan you just mentioned and we've only been speaking for like a couple of minutes that you grew up as a kid and you came out of this halt-like environment can you explain to us what that was what your upbringing was like and how you kind of slotted into this life? Well, I was born into it. So my mum joined when she was pregnant with me and she met a man who eventually adopted me and became my father. So it was more like, I don't know if I'd go so far as to call it a cult. I mean, 60 Minutes recently did an episode about what I was brought up in actually. It was very much like you're sort of cut off from society a bit. So you're not allowed to watch movies. You're not allowed to listen to what they'd call

secular music you're not allowed to dance you're not allowed to spend time with people that aren't part of the church you know you're not allowed to travel unless it's for if you think of like the Westboro Baptist Church if you've heard of them they carry signs on the streets you know saying like gays are going to hell and things like that so as a kid that would that was me carrying signs on the street and like preaching on the street and door knocking the whole thing And so I got married when I was 18, you know, to a guy from the church. And it was just, I don't know, it was different to the way most people are brought up. And I left when I was 24.

So me and my husband left together, but our relationship didn't really last six months. I mean, I remember when you were talking a lot to me about this in the house. And when I say the house, it's the TV show, The Challenge, where it's like, it's like The Bachelor or anything else. You don't have phones in there. You don't have anything. So you just talk to each other, which I think is incredible, but everything you told me from your life was like an, oh my God moment to me because I'm so far removed from that

world. I didn't grow up in a church. I didn't grow up religious at all. So everything felt extreme, but I don't think it's just for me. It does sound like your upbringing in the church was extreme compared to other people's experience in the church. Can you talk about some of the other things that were really kind of left field? Like, you know, you couldn't even do yoga.

You couldn't watch TV. What were some other things that were real standout to you? it's funny because these things you know they've only really come up for me in the last couple of years because you're so used to you know it was just my life you know it was felt so normal to me but I was talking when the 60 minutes episode came out I reconnected with a lot of people from my church you know people I grew up with and our church was kind of like half underground with all these different rooms and I remember when I was a kid for Halloween every year the church would hold a Halloween event. So all these different rooms, they would have a different scene.

So for example, I remember my mom playing a car accident victim. So they had like the hood of a car and then she was like sprawled out on top with like blood all over her. So they would invite people to come in and go into these different rooms and it would be more about this is how you're going to end up if you don't get saved by Jesus kind of thing. I remember my friend playing an aborted baby and my husband as a kid he had nightmares because he was sort of forced to participate or maybe not forced I mean we all wanted to be involved you know it was like you want to impress the elders and your parents and everyone but it was quite traumatic so we weren't allowed to watch movies but they did let us watch from you know there was no age it wasn't like you

had to be a certain age to watch these films but they had these films more about the rapture and I don't know if you know what the rapture is like the end of days I don't yeah like the end of days so we'd watch these movies about the end of days and so the idea is that God comes at the end of days and takes the bodies of everyone that Jesus has accepted and everyone else is left behind so for example you would get home say your parents wouldn't be there or there'd be a pile of clothes on the on the floor because their bodies have been taken up to heaven and so it was always this big fear as kids that you would be left behind if we used to prank each other you'd leave piles of clothes and hide for your friends you know and your friend would get back and be like oh my god

I remember a few situations you know kids freaking out and absolutely losing it because they thought they'd be left behind and if you get left behind the only thing that you can do is be a martyr in order to get to heaven so the films would be about heads being chopped off and women being pulled screaming through streets and and so you know you're not really desensitized to film but these are the kind of films that you're watching so as a kid I had a lot of sleep issues you know there were exorcisms in the church and they didn't call them exorcisms but it was casting the demons out so you know we all had our chance to be exercised that's what you call it so yeah it's interesting and I didn't think that I had you know issues from growing up in the church when

I left because you really just want to put it aside and distract yourself and live your life finally you know I hadn't traveled I hadn't dated I hadn't you know I lost my virginity on my wedding night it was yeah it's a different world and then it's not till you get outside of that you're like wow there's a whole life to be lived here when you got married at 19 18 18 when you got married at 18 stupid don't recommend it no I mean like I can't even relate to the environment in which you grew up in but I used to be part of an evangelical Christian church and they were very very strong in encouraging people to marry young so that they didn't sin so they didn't have sex out of wedlock there was a huge encouragement and I would have been 15 16 at the time and there

were people who were 18 who were getting married. And did you feel as though that was the natural progression of your relationship with your husband at the time? Or did you feel as though it was forced in the expectation of the church that you would get married so young? It was definitely like I was in love. He was like my first love. He's an amazing person. Like he's great. He's, you know, good looking, smart surfer kind of guy. He's great. So it wasn't that it was like I was forced into marrying someone it was like you know we fell in love and but it was very much like you can't have sex until you get married it was kind of like oh well I guess we have to get married you know because we're horny yeah I mean we wouldn't have gotten married

if if it wasn't expected of us we would have dated like normal people and maybe in our 20s at some point got married or but yeah it was I guess it was expected and it was also if you wanted to be in ministry, which my husband wanted to be what they call sent out. So you become like a pastor and you become the pastor's wife. You have to be married. So it was just what was done. I remember I was a bridesmaid five times by the time I was 19. And the wedding was, it wasn't your own. You got married in the middle of a church service. So it wasn't like you had your own day either. I remember hating my wedding day so much. I'd invited a few people from my work and it was basically the sermon was just about

hell. It was about sinning in hell and this pastor screaming at all my work colleagues. And it was, I remember feeling really embarrassed and also a bit like, should I, you know, is this the right idea? My best friend at the time wasn't part of the church and she was one of my bridesmaids, which wasn't looked upon well and I remember her being like come on let's just fucking run let's just go to being a little bit tempting but I you know I loved I loved who I was marrying and that was the most important thing at the time in 2016 Australia met you on Richie Strawn's season

of The Bachelor so that was I think I guess seven years ago I can't do the math quickly seven years ago and what we did see which I think is the first representation really that I can think of on TV of bisexuality was you left that season with another female contestant. I do want to talk about what that time was like, but I want to take that back first to when you were a teenager or growing up and you were still in the church. Did you know that you were bisexual at that time and it was something you had to hide because I guess you were going to hell or is that something that you didn't even let yourself explore? My first few kisses were with girls in the church and part of me is like how did I get them to kiss me it was like it was preached so much that

you know homosexuality was a sin so I definitely had that deep-seated shame not just about liking girls but about the fact that I'd followed through with some things and it was very much hidden like no one knew you didn't tell anyone so I knew growing up that I was attracted to women but when I married Chris I was all about him so it wasn't really in my mind until we split up and then I started dating women but it was hard in the way of you know I think one of the worst effects from being part of such a fundamentalist church if you could call it that is the sort of shame and guilt that carries on that has been about my sexuality and about other things too like someone will cut me off in traffic. I mean, I'll cut someone off in traffic and I'll think

about it all week. I'm useless. I shouldn't have done that. And, you know, just this shame and guilt that sort of stays with you and you try and attach it to things, even if you've done nothing wrong. And I certainly felt that about my sexuality, but you know, it gets better with time. How do you come to a decision to leave an institution like the church that you were involved in. When so much of your life, your identity, your belief system is wrapped up in it, what changed for you and what was the catalyst that made you want to leave? I had wanted to leave for a while. It was actually my wedding day that was one of the first things that I was like, this doesn't feel right. It was so controlled, you know, it was like meant to be

your one day, especially as part of the church, because you're not allowed to do much. So it's meant to be your one day where you can, it's about you and you can enjoy yourself. And it just, it wasn't like that at all and there were just so many rules and I had a lot of questions you know I've always had a lot of questions and you start to be seen as what they'd call a Jezebel for having questions and you start to get socially excluded there were a lot of things that didn't add up for me personally in the bible so I'd wanted to leave for a while and I'd sort of brought these things up with my partner because I still wanted to be with him and he was kind of like no you've got to pray about it you've got to pray and fast what they say you'd fast for three days and pray and

then God would listen to you and give you the answers and I was trying all these things but nothing was happening so I'd wanted to leave for a really long time and then one day my husband said to me hey like I've got to tell you something and I was like oh okay and he's like I don't believe in any of this anymore I want to leave and I was like sweet that's it he struggled a lot because his his sister had died of cancer and so she'd been married like six weeks or something when she died we're all part of this church and he always believed that she would get healed that God would heal her and she would be okay and she had a severe liver cancer which is pretty bad she died and he always I think he carried a little bit of guilt for not spending more time with her

because she thought she would always be around like you really believe this stuff you know because you've done everything right by the church that they told you to do so why wouldn't she survive from what they've said exactly and so I think he carried a lot of you know pain about that and it was just a slow progression and maybe it's also like you're young and you're looking out of the church and seeing people do these amazing things and you're so you know you're spending your Saturdays down the street preaching and door knocking and like we literally had events on every morning and every night so before work and then like after work it'd be a bible study or a concert or you'd be door knocking or street preaching or whatever it was and it was like

your whole life is taken up by it and I think I don't it's funny because I don't feel like I've really talked we didn't really talk that much about it about the reasons for leaving it was just like he didn't believe anymore and I'd wanted to leave for a long time and it was just like we did but a big problem that people have when they leave the church is a lot of people end up this sounds wild but becoming drug addicts and alcoholics and really messing their lives up because you have no sense of what morality is you know you have to redefine that and it's very easy to leave the church and kind of go off the rails and I'm sure a lot of people would think that about me you know I left and it was like well I've never drunk alcohol before you know yeah

and you don't know where the limits are and you've had no one teach you the limits you know celibacy is taught not safe sex for example yeah it was definitely hard and we Chris and I both dealt with being in the world differently for me I wanted to travel I just got a promotion at work which meant I was able to move and for him I think he is not like that now but at the time he was like well I want to party and I want to meet people and I want to you know which is understandable and I eventually got to that stage too but it's yeah it's hard it's like morally where do I stand I don't have a God telling me what to do or a church telling me what to do. I have to make these decisions on my own.

How did the people around you respond when you decided to separate? I didn't really have anyone around me. I know that sounds strange, but well, we had left the church and I didn't have any friends. And that was another thing that was really intimidating because it was like you're cut off from your friends in the church. And I would still be in contact with them occasionally, but they were only allowed to be in contact with me to witness to me to like try and bring me back to the church and so like I didn't I didn't have anyone you know so in terms of how people responded like

there was our families that were very upset and you know I had left him and it just wasn't what where I wanted to be anymore you know I wanted to have new experiences and it was hard it was hard for a couple of years like in many ways he's the only person that really understands what it was like being brought up in that church that sort of essentially knows you as well well it almost is like a literal rebirth again like you've never had to make a decision for yourself really you've always been told what to do where to go when to do it how to do it and all of a sudden you're in an adult body but i'm imagining like you're a child mentality because you've never had your own autonomy in your entire life. And then all of a sudden you're trying to make these

life decisions in a world that you've got no one to support you because they won't come along with you because you've left. I know now that you have a relationship with your family, but how long did that take to come back around until they sort of accepted you back again and you formed that relationship? Well, I was actually one of the last to leave the church, which is crazy. My dad was the last to leave and he's still super religious. But I mean, my family's been okay. My mom left to church when I was about 13, 14, and we were pretty much excommunicated from her at the time, which was tough not having your mum, and it was very hard for my mum as well. And there's a lot of things that could have been done differently.

But my sister, you know, she left when she was 18, just like, I don't want anything to do with this, and just left home and left the church and lived her life. And my brother just slowly stopped going. So everyone had kind of left by that time anyway. so it wasn't really a huge issue I was probably the biggest problem I was the judgmental church goer which is funny to look back on now you know I sort of complain a little bit about some of the people and the way they've made me feel but I used to be that person that would make people feel that type of way and you know you're going to hell because you've done

this and that and it's funny it makes you have a little bit more empathy when you you know you've been on both sides of it what about when it came to dating again I mean obviously when you very first came onto the screens and became somewhat of a public figure. It was through The Bachelor. How was that experience and how was dating when you've not had any one experience in dating, but you've had nothing to compare it to? No, no idea of like what's normal, how to be treated in a relationship, how to put rules in place or boundaries. Like how did you navigate that period? I think I did pretty well, actually. Like I was pretty excited to sort of start dating again. I think the biggest issue was as a woman, you're meant to be compliant to men. And so I struggled

a lot with people pleasing and saying yes to things that I should have said no to. That was the biggest thing. And I think, you know, I look at some of the relationships I've had more recently where I've been treated terribly and have been way too forgiving and not judgmental enough kind of thing just accepted that it's going to be my it's my fault because I'm the woman and that's been the hardest thing I don't even think that that is just something you know that someone in your position would experience coming from such a strict upbringing I think that women in general that's what we want to do right we're brought up to please no matter what family you're in you're brought up to not make too much commotion to accept things that we probably shouldn't have

to accept I don't know what it is I think it's exactly that I think it goes back way way before like the church i think it goes back to the fact that like women never used to have jobs our sole purpose was to get married and make the man happy be the perfect housewife whatever he said goes is is what it is and for some reason it has seeped through generations and we're still experiencing it now yeah it's crazy to me that it's still a thing but i've got so many friends who just don't put up with bullshit you know and i really admire them the first red flag they're like nope we did a really interesting episode with elise lowen all around the good girl mentality and how it's something that is almost like a social condition that's bred into us, this need and want

to quote unquote behave in a certain way and how the flow on effect that we can all think that we're above the patriarchy, but it's like how it has affected us in so many ways. But also I think in your case, you have dealt with all the things that every other female has dealt with, but with such an added layer of complexities with religion thrown on top. When you hear that story about your childhood and your upbringing, it's even more fascinating to me that you could put yourself into a position where you would go and do something like The Bachelor. You know, it's just so otherworldly in comparison to where you came from. I think it's also, you know, like I was talking before, people, they leave the church and they're so desperate to have real life experiences

that they really dive in deep and sometimes dive too deep. And I think I was definitely one of those people. I did all the things that I wasn't meant to do, or I took a lot of drugs in my 20s because it was just like well I can I can now I drank a lot I traveled a lot I lived in different countries I went on a reality tv dated a woman was on the cover of a men's magazine all these things that were so looked down upon and I think I did a lot of them to try and I don't know I don't know what it was like remove the shame trying to do as much extreme things as possible to sort of desensitize yourself to the shame what's also like one ultimate stuff for you to the church is like I'm going to date a woman publicly on national television like like fuck you exactly I think I

became a lost cause then where no one wanted to you know preach to me anymore they're like she's too far gone she's never coming back we don't want her back yeah but what was that time like because I do feel like you were the early days and I remember I didn't know you from bar or soap obviously I knew you on the tv but I remember and correct me if I'm wrong but I remember there's being this mentality floating around where you and Tiffany, who was the woman that you left with, you were getting a lot of hate about faking the relationship. Like there's no way these two women would have ever, you know, you've gone on a show to meet a man as if two women are going to get together on the show and leave. They're doing it for publicity. I remember so many nasty comments

floating around. What was it like for you to live that experience? It was pretty shit. Like I feel like, you know, and this was seven years ago, which I mean is a while ago, but also not that long ago and I remember we were one of the first people on reality tv representing bisexual people and I was actually pretty surprised by the amount of hate that we got in general and not just of people accusing us of faking the relationship but just the fact that we were queer there was so much hate and again like you know coming from the church and then into the world I had a wrong Philly assumes that people would be accepting of who I actually was and I was so wrong you know I remember us going to like a couple of festivals and just being absolutely mobbed and yelled at

and I got spat on once like it was yeah it wasn't a nice experience at all and it it almost put me off dating women altogether it was shit and it was kind of like we were able to pave the way for other people but it's nice to be the person after the way it's been paved but it didn't feel like that at the time that yeah it felt like we were the first it's actually so interesting that you put it like that because even when you say seven years it's not that long ago you think about how far we've come in the reality tv landscape in the representation landscape it's not rare now to have a bisexual personality represented on the screen there have been so many people who have come from the batch franchise that, I mean, we had Brooke Blurton who was the

bachelorette and she was bisexual. So now it's something that we have been way more conditioned to. And I think overarchingly people are like very accepting of it, but to think that that was your experience seven years ago. And I don't think there's been very many discussions around the fact that as somebody who pioneered that space, the backlash that you received for it, it kind of was like somebody had to be on that first wave in order for everybody else to have it so much easier as they should have it and it's interesting because we received most not most of the brunt but a lot of brunt from the network saying that it was embarrassing that we were an embarrassment and what's funny about that is the year after Tiffany and I broke up they asked me if I'd be

interested in being the bachelorette and being the first bisexual bachelorette and that was the year that Sophie Monk did it, which I understand why they, why they took her and not me. But I mean, it came down to public opinion, you know, we were receiving so much hate from the Bachelor community, from even co-stars, you know, like Brittany, you said you had this attitude about who I was before you met me. And I've done my best not to feel like I have to go online and explain myself constantly with a lot of things it's like oh well if people are going to feel that way then they can it's kind of nothing to do with me no and I would be embarrassed to say my attitude to you was you're so and I've told you this you're so ridiculously good looking and

you're even better good looking in real life and I say that because sometimes you think that when someone's online that everything's photoshopped everything's their best face forward you know and I just thought you were so ridiculously good looking that I made a very naive and ignorant assumption that I probably wouldn't get along with you because I just felt and this is a reflection of me your persona online looks like you're really girly not now because I've done a deep dive no not now just because I didn't know you I just looked at beautiful swimsuit photos and modeling photos you're an amazing model but when I got to know you you're a tomboy you ride motorbikes and you scuba dive and you sharks all the time and you

surf and you do all this kind of stuff and we got along like a house on fire so I had definitely had these preconceived ideas of like we probably just wouldn't get along i kind of felt that about you as well brit you were like the big wig of the challenge coming in yeah we were like we were always teasing britney you're the draw card here but you do you have these preconceived ideas of people and i certainly had it about you as well crazy times do you remember when that electrical pole went through the bus yeah we don't talk about that we don't talk about the fact that a whole bus of us nearly died in reality tv why don't we talk about it we all almost died it was insane and we're not joking an electrical pole fell through okay let's just say it it fell through as the bus

was driving it swung down smashed through the window in front of missed kieran and conrad by about two inches started a fire inside the bus we couldn't get off the buses wouldn't open and they were like let's never speak about this again we thought we're gonna die we've never spoken about it here we are talking about it i know kieran and conrad the only reason they didn't get killed is because they had lent forward the exact time you know a few seconds earlier to be like sorry what did you say and then they'd lent forward and this electrical pole just comes through it was like and they wouldn't let us off the bus because of security and protocol i think that's what it was and i had glass all in my hair over my face like literally people think we're

exaggerating in this story we all almost died it's insane anyway let's yeah they're probably going to sue us now. If they can't, our contract's over. Yeah, true. Megan, something that has happened in your life that is absolutely huge. In the last year, you were diagnosed with something called spinocerebellar ataxia or SCA6. Can you tell us about what that is and how you came to find this diagnosis? Yeah, so spinocerebellar ataxia, how would I describe it? It's basically, it affects your cerebellum and your spine. So Purkinje cells, which are the sole output neurons that tell your body what to do, start to misfire and die. If I could draw a parallel, I would say Parkinson's is the most similar to what it looks like. And one of the reasons I wanted to get

tested for it, I mean, it's in my family. So my grandfather had it, but it was actually when we were on the challenge that I realized that I should get tested I was having a few issues on there one of those I mean we made a joke about how uncoordinated I was and that my balance was off I've always been pretty uncoordinated and lanky and kind of clumsy but being on the show I was like there's something not right here like my motor function skills were off even you know if I was cold I felt like my speech would be off or if I was nervous my speech would be off and even like running when we would stay it would be fine once I got warmed up but it was like I had to consciously be like okay legs move and things just weren't happening like they used to the biggest

issue was also neuropathy in my my hands my arms my legs why I couldn't feel my hands so there were few challenges that we did and I didn't tell anyone that this was happening at the time but like I remembered you know one of the elimination challenges where Connor and I had to go into a room and blindly feel around like I couldn't see anything so I couldn't feel what was going on and so I sort of left but I was also like I you know was going through a very stressful period of time in my life if you remember Brit like kind of I'd lost a lot of weight and was just struggling so I was like maybe this is just stress related maybe I'm just really stressed and you know I wasn't sleeping if you remember I didn't sleep the first four nights I was there

but I would take a sleeping pill that was meant to knock me out and I would still be wired and it was like okay this is pretty full-on so a couple of months after I got back from the the challenge I I thought okay I need to get tested but it was also it was confusing because my pop he didn't start getting symptoms until his he was in his 60s so for me it was like this is an old person's disease you know is what I had always thought and if I have it then I don't have to worry about it until I'm 60 and if I stay healthy and active and that which my pop wasn't then you know maybe I'm going to be 70 when I start having symptoms so it didn't feel like a possibility that it didn't seem like an issue even if I had the disease but what we didn't realize is that

yeah so basically when I got tested I found out that I had four more gene repeats than my pop which is a lot which means and they don't fully understand what it means because it's such a rare disease but from what I can tell and my sister's been diagnosed with the same disease is that we're having symptoms now in our 30s that my grandfather didn't have it's been hard to come to terms with you know like I didn't plan on being disabled I didn't plan on this like I got out of the church 10 years ago and I feel like I've had 10 years to live my life and a lot of that 10 years has been taken up with shitty relationships you know and I don't think I handled the news well let's just say that like I follow all these inspiring people online and I'm like how are

they dealing with this so well because that wasn't my experience like I was devastated when I found out and as time goes on I feel like I've become more devastated because I'm having symptoms and it's scary like I've I've seen what it can look like like my grandfather he couldn't talk he couldn't eat he was wheelchair bound basically every function that you had apart from your wits like you're still able to understand everything and process information you just can't communicate so I've seen that head-on in a person much older than me but the fact that that's going to happen earlier is terrifying and you know I'm single and you know wanting to date and I'm like I don't even know how how to deal with that in the dating world like do I have to tell someone like do I

even want to date is someone going to have to look after me in 10 years you know it doesn't there's so many things that I have to deal with that I didn't think I'd ever have to and it's like I don't have enough super you know there's these things that you don't think about have they been able to give you any indication in terms of the progression the speed of which like is there any indication that they can give you or is it completely unknown it's so rare it's like one in 100 000 people have spinocerebellar ataxia and they've got no there's no research on it it's not like ms which you know more people have so a lot of obviously there's more studies on it and a lot of research but they're only just doing the research into what i have kind of now and there's

barely any basically when i got diagnosed the neurologist was kind of like all right there's no treatment there's no cure it can't give me anything and even with treatments that might be to help my symptoms. Treatment's not approved for my disease, which I don't know if it ever will be. So it's kind of like, all right, wipe your hands clean. The neurologist, wipe your hands and just go live your life and do your best. Stay active, be healthy, take your vitamins. I mean, I can only imagine it's 10 times worse knowing that there is nothing. It's one thing to be diagnosed with something and know that there might be an option or it might not work, but I can put my energy into this I can go down this channel it might be a holistic approach it

might be science-based whatever it is it gives you I guess a form of hope yeah and something to work towards whereas I guess for you it's just like cool I just go and wait for this to happen exactly and that's exactly it it's like in some other countries they've got you know a few different treatments more to manage symptoms one of those is what they give people for altitude sickness when they're you know climbing Everest or whatever because vertigo can get pretty bad and you can be quite imbalanced. I mean, that's what ataxia is. It's imbalance. So there are treatments overseas and that, that maybe I could go over and get, I mean, I'm not having, I feel like I'm not having enough symptoms now to warrant that, but the best thing that you can do is slow

the progression of the disease, which is why I would be more interested in getting treatments earlier on rather than later. I would try anything really, as long as it's not damaging me further. it's like my sister's been diagnosed she's got three kids i've got an egg donor baby which was kind of rough finding out i have this disease and giving a you know you think you're giving a gift to someone by here's my eggs and now you're like well shit this was maybe this was a bit of a curse i mean a child is never a curse but it was a tough phone call to make but there's add-on effects to it it's not just about you you know it's about all the people around you so i would love to find treatment but it's all experimental for the most part especially with the type that I have it's

so so rare ataxia is pretty broad compared to spinocerebellar ataxia type 6 you know so it's like I worry that with these experimental treatments that it could make things worse but I guess again it's almost like the bisexuality on reality tv thing someone has to go first so yeah i would love to ask you about your decision i mean you just mentioned that you have an egg donor baby when did this happen and what was your decision process around this was it someone who was a friend that was in need you often hear about sperm donors but i don't think you as often hear about egg donors what was it that led to your decision to do that i had wanted to donate eggs for a long time since my like early 20s i thought it would be a cool thing to do i

wasn't sure if I ever wanted to have children and I was fertile and around the time I donated eggs I had started dating someone that had had a vasectomy and they already had kids they didn't want any more kids so I was like oh well this is like a way to reproduce you know without actually having to parent yeah I mean you have to go through counseling and it's like a long process in order to do it but it wasn't friends it was I'd spoken to someone that ran like an egg donation page basically connecting potential egg donors with recipients and it's kind of like tinder you know it's tinder for your eggs and i yeah met this couple who i really liked and we facetimed and chatted and then there was a couple that i had talked to before them and i just didn't feel it

didn't feel right and then this couple it it felt right so and they knew that my grandfather had spinocerebellar ataxia but it was again it was like well he didn't start getting symptoms until is 60. This is what it's like. I've only got a small chance of having this disease. And they were like, yep, that's fine. And so we went through the process. So did they not do genetic testing? Did they not do that? And if they did, would they not have picked this up or is this more of a specific test? Yes, that's exactly it. Like they do genetic testing for sure for embryos. I had to, in order to donate, I also had to do genetic testing, but they don't test for spinocerebellar ataxia it's too rare it's like who the fuck would have this which looking back

now i'm like maybe they should have because i disclosed that as a potential for me and it was the only thing in my medical history that could have been an issue like i've got no history of cancer in my family or diabetes or or anything like my you know biological family is really healthy so it was the one thing but they decided not to test for it the recipients weren't that worried about it so we just went ahead and they had a baby so what does that mean when you said it was a really hard phone call to make because obviously you went ahead and let the family know what was their response and are they going to go and further test their child are they just going to wait and see what happens yeah so they were one of the first people that I contacted

before my own family I think because it was the first thing on my mind like you know the idea that it could affect and at that time I didn't realize that I had more gene repeats as well when I made the call it was still something that I thought would be quite far down in the future for me but I mean they were amazing they're amazing people and I think at first I'll be like oh this is this is not good and I gave them the details of my neurologist and how to get tested because it took four months I was waiting for four months to get the results as well I've kind of left that in their hands and we haven't really talked about it since they were just kind of like I'm sorry to hear that and yeah we'll get her tested and that's pretty much how it

went I mean what can you do there's no treatment there's no how do you feel like your life has changed or you're living life differently knowing that one day your speech will go and your mobility will go and it's almost going to be like that slow decline how has it changed for you well when I first got diagnosed, I thought that I was kind of like, all right, I just need to live life to the fullest. I need to travel and ride motorbikes and scuba dive and do all the things that I'm eventually not going to be able to do. And I would love to say that I have lived like that. And I mean, I have in a way this year. I've definitely tried to eliminate stress factors in my life because they say that stress is one of the worst things that you can do. The progression

of the disease will happen quicker if you're stressed so it's been getting rid of people in my life that aggravate my peace you know that have caused a lot of stress in my life over the last couple of years yeah I've had to change a few things and so at the you know I've stopped I used to drink you know quite a lot of wine and now I've had to pull back and I'm not drinking during the week I'm I'm really careful I I don't have any interest in doing drugs I try and you know exercise a lot I eat really healthy I you know so it's changed my life in that way but I wouldn't say that I've just come out of it just kicking and again I feel like I hear so many inspiring people that are advocates you know they're disability advocates and I don't feel like I'm there yet

I feel like I'm I'm still struggling to accept my diagnosis and I've struggled a lot with you know depression over the last year and I don't want to waste my time being depressed and not sleeping and being stressed about being stressed but if there's anyone out there that has felt the same way reach out to me because it's not always easy you know and you want to be the person that defies all odds and just gets out there and another thing that's been really hard is being single and dating again and not really fully understanding what it might look like like I could have the same symptoms that I have now for the next 20 years and be completely fine and not have any more issues than I'm having now but we don't know and I think there's the

unknowns in it that is scary as well like I don't know how much time I have like I love to read I love to read I love to paint I love to write and you know my vision will will go my you know everything that's important to me okay I like to do a lot of adventurous things I'm not gonna be able to do those things you know my life is going to be cut short in a way not by death but by illness and so I guess it does change your perspective but I'm still sort of processing and yeah we'll have to we'll have to see how things go I think it is so humanizing though and I truly mean this because we've interviewed some incredibly aspirational people who have been through great traumas and have come out the other side with this intense positivity sometimes almost

unbelievable positivity where you think wow like you know how do they manage to savor every day but I also think it's so important to honor the journey towards getting to those places so often we talk to people who have already reached that destination and then for those who are in the midst of trauma in the midst of dealing with the big shit that life throws at you you can feel like you're failing because you haven't reached that destination yet or maybe for some people you never reach that destination of full acceptance and for every single person it looks very different so I think that there is something incredibly humanizing about having someone be honest about the fact that they have not yet completely accepted or even been able to reach

this destination of positivity around something that's adversely affecting them that's exactly it and I think there's part of it where you don't want to be a victim like you don't want people to see you as a victim you don't want people to feel sorry and so in that way on my Instagram and talking about it I try and I mean I barely talk about it but when I do I try and be really positive and I am grateful you know I've had more opportunities than most and I'm very very lucky but i predominantly or only say things like that because i don't want people to look at me and isn't it funny these things that you don't think about that i've never had to think about before but it's like i don't want to be seen as a victim i don't want to be seen as oh poor megan someone i

was with said to me and i've told brit this before but a comment they made to me was megan i could date a 20 year old without a brain disease and i choose you and this person had disrespected me and many ways but this is the thing that it like I'm pretty sturdy like I'm not easily offended but this hurt it hurt my feelings so much to hear that and it was a little glimpse into what people might see me as or see me like it's because it's been dressed up as a compliment it's like I have the choice of anyone but I'm choosing you it's like they're trying to imply that it's because the person you are on the inside is so special but then by implying that they're saying well the person on the outside that you are is defective exactly it was very offensive and

they'd said this to me a few times over the night and I'd kind of pushed it away and it wasn't until a few days later that I brought it up with this person and told them but it also it very much made me lose respect for this person as well because it was like who the fuck do you think you are you know that I'm the idea that like I should be grateful that someone has chosen me was horrible. Yeah. And also in those moments, it makes you realize that sometimes not even just sometimes often being on your own is better than being with people who don't and can't respect you or love you in a way that you deserve to be. Like it's so hard to get to a place in life where you're like, I would rather be on my own and have agency of my happiness, have agency over my

choices than to be with someone who has control over that and has control over my happiness because of their infidelity or their lying or however else they're showing up in the relationship. Yeah, that's exactly it. And it's, it's a kind of a hard place to get to. Like I'm sure Brit understands what it's like when you're, you know, you reached like Brit and I about the same age and it's kind of like, how many times do I have to do this? Oh my God, I have to start again. Yeah, I know. And it's kind of, it's intimidating starting again. And I think that's one of the reasons I put up with so much stuff is because I mean, I love good company and sex and you know all the things but in the end it's like am I betraying myself to be in this position

and if the answer is yes then you shouldn't be there I appreciate and can imagine the struggle that you feel about should I be dating somebody if in 10 years or 15 years that this is going to happen and they're going to have to look after me I understand that but I hope that doesn't stop you from dating and finding that person because the right person is out there and the right person won't care yeah for sure and again it's hard to know how the disease is going to progress like my mum's been diagnosed and she is 56 and she's completely fine you know she's having very few symptoms so it's like who knows like I could be absolutely fine they could die you know I could get married again and have kids get the embryos genetically tested and have kids and live a

really normal life or it could be completely different but yeah we don't know and I don't want to let it stop me I think my confidence has really been affected by some of the comments and things that have been said to me in the past and it's also hard because you can google my name and one of the first thing that comes up is Megan Marks diagnosed with you know neurological disease so I don't even really have the choice to start dating and decide when I want to reveal that because I mean let's be honest you google people you're going on a date with them yeah you google them you look them up on social media and you see what's going on and there's it's like I don't have that choice so it's difficult and I think maybe I'd have more confidence if I was able to

reveal that slowly to someone and you also you don't know how yeah again I was going to say you don't want them to assume that you're a certain way when you're not and but you can't give someone answers either like even if I was going to have that conversation with someone it's like well I don't know what's going to happen to me you know I don't know what's going to happen I think that this has been a progression over the last few years, but you were very public facing for a while across social media, across public engagements, but it seems like over the years you have moved further away from that life. Was that a conscious decision?

Was that a conscious decision around privacy or was it just simply the, you know, how life has transpired and where you've moved to? Like, what does that look like for you now in terms of how public facing you are with life? I think I went through a stage a few years ago where I've wanted to, I mean, it sounds so sort of wanky and cliche, but I wanted to live a little bit more authentically. And I'm not saying that you can't do that and be on social media. Of course you can. And I'm still on socials, but now I only post what I want to post. And, you know, I can be pretty real about suffering from a bit of

depression lately and that I've been going through a hard time and I've lost a lot of weight because of stress and I've you know been able to talk about those things but it's more I guess it didn't feel good anymore it just didn't feel good anymore and I just wanted to live a quieter life and not feel like I have to explain myself I always felt like whenever I did get on social media and voice an opinion that I got so destroyed by the media or by various personalities and I wasn't very good at handling it. You've got to have really thick skin, almost callous skin. Like I'm sure that you two do, you know, it's not thick enough either. You have to. And I definitely, I mean, something in which it was very public last year, it might've been the year before,

but it was the conversation around ADHD that transpired in the media. How do you deal with situations where you feel as though you've been misrepresented, misunderstood, miscommunicated, and then you don't have the ability because like when you're up against almost like a fight online where you've been misrepresented, how do you explain who you are and defend the person that you are when you've been misrepresented? You have to get to the point where you understand that no amount of explaining yourself is going to make you win is the most important thing. And for me, you know, the first thing I try and do is take some accountability and have

a look at myself. like if you're getting a whole lot of negative energy put towards you not all the time but sometimes you're wrong you're wrong and you've got to accept that you know obviously people are going to take one line of what you said and pull you through the coals but for me I mean at the time when that ADHD conversation happened I was waiting for the results of you know the disease that I have right now and so it was a very interesting time to be called ableist and when I was on the show I was taking ADHD medication I've been diagnosed for quite a while I mean I don't want to get into it and try and explain myself again because I feel like I'm about to do

that but I think the thing is that sometimes you don't deal with it when you get that much vitriol and hate spat at you sometimes you just don't you know and it's like oh you know the best thing to do is to not read the comments and to not engage and to not and for sure but it still hurts again And it was another reason where it's like, okay, I'm taking a step back from social media because it just wasn't easy. And at the same time, it's like, well, is this good for my mental health? And you want to sort of take a step back and work out what you value and why you're talking about the things you are and whether you should or not.

And I, yeah, I'm sure it's different for everyone, how they deal with it. I specifically saw a story set that you did a little while ago where you were genuinely really vulnerable. And I know you said you don't like to go onto your socials and show a weakness or be a victim, but there was a moment where you were trying to raise awareness for your disease because it is unknown and watching your vulnerability and the fact that I get up, I think I'm going to cry talking about it, but watching how scared you were in that story set where you were like, I don't know what my future is and no one's helping me.

No one is there to help me. I messaged it to the girls and I said, like, I want to put her on a platform where she can talk about it and more people can understand because I can't imagine how isolating and lonely that feeling must be yeah and you know I'm part of a small cohort of people that has an incredibly rare disease there isn't help and and part of me feels like I can't ask for help either because it's like what I'm dealing with affects such a small cohort of people so why why ask for it there's more important things there's more important diseases there's and so it's it's been incredibly isolating really isolating and it is it is hard I'm not gonna lie yeah but thank

you for giving me the platform and thank you for allowing me to talk about it I really appreciate it we hope that you enjoyed today's interview guys and if you did please go hit subscribe the podcast is free we never charge you for it you can hit subscribe wherever you listen to your podcast what that means is that every new episode will end up in your library and you don't have to downloaded. It also is what helps us grow. So we'd be so grateful for that. And please go and follow us on social media. You can follow us at Life Uncut Podcast or at Life Uncut Podcast on TikTok and Instagram. Don't forget, tell your mum, tell your dad, tell your dog, tell your friends and share the love because we love love.

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