Voiceover:
Content warning: The episode contains discussion of mental health issues and suicide.
Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers together with leading clinicians, researchers, and advocates.
Jeremy Henderson:
Claire and John, welcome to the Raw Nerve Podcast.
John Raftopoulos:
Thank you.
Jeremy Henderson:
Thank you for the opportunity to sit down with you. I’m saying welcome to the Raw Nerve Podcast. I should say thank you to you
John Raftopoulos:
That’s okay.
Jeremy Henderson:
For welcoming you to your home today.
Claire Jensz:
You’re welcome
Jeremy Henderson:
Firstly, a big congratulations on the film. So we are just a few weeks out from the movie’s premiere and the Australian release. How are you both feeling about that?
Claire Jensz:
Happy. A bit excited, a bit nervous, but on the whole just satisfied.
John Raftopoulos:
I think it’s a combination of all the work of six years. And we’ve done the work now, and just hopefully a lot of other people like it.
Claire Jensz:
Yes, it’s very…
John Raftopoulos:
That’s how we’re feeling. It’s nerve wracking, definitely.
Claire Jensz:
It is. It definitely is.
John Raftopoulos:
Definitely.
Jeremy Henderson:
Take My Hand’s a love story. It’s an inspirational story, and it’s based on your own real life love story. But maybe if we just start with the movie first, if you need to tell our audience, or explain to our audience the movie just in a few sentences.
John Raftopoulos:
Do you want me to do that, darling?
Claire Jensz:
Yeah, you go ahead, darling.
John Raftopoulos:
Sure. So it’s a love story about one woman’s journey who she starts out in a country town. And she meets a guy and they fall in love, but she has aspirations to get out of a small town, and use the good brain that she has to get into banking, and she does. She leaves, falls in love with this young boy. And they have a bit of a romance, but then her study and her future is overseas, so she heads over to the UK. And then we fast-forward 20 years later, and we find that she’s quite a successful investment banker, had three children, got a successful partner. But then at the peak of her career, the signs of MS start to show. So the cognitive fog, and the blurred vision, and all those things that Claire experienced.
And then we see her symptoms play out, and then she gets fired at work, and then her husband dies. So it’s a pretty tragic middle part of the film. And then they look like she reconnects with Michael back in Australia. She brings the boys back, and she’s at probably her worst when she sees him again, but they rekindled that flame they had when they were younger. And her love for horses is lost for a while as she gets sicker, but he encourages her to fulfill that dream once again.
Jeremy Henderson:
Thanks. So Claire and John, I understand there are some key differences between your actual story and the film. And there’s some sort of artistic license, creative license, but there’s still a lot of there that’s incredibly personal and true to your life. So I guess my question is for you both, but Claire firstly, what’s it like putting your own story, something so personal and something so honest, putting that out into the world for everyone to see?
Claire Jensz:
I think it makes you very vulnerable, but I think without that vulnerability it doesn’t really hit home enough, I think. So hopefully people feel that it’s a journey I took, and a journey I’ve grasped with and gone along with. And I feel it’s been worthwhile. And I’m happy that people now hopefully will see the story, and love it for that reason.
Jeremy Henderson:
John, you mentioned the six-year journey to get the movie made. I’d love to know what was the genesis for making the movie? What was that moment when you both said, “We’ve got this story to tell. It’s our story, and more importantly, we want to tell it ourselves?” What was that point?
John Raftopoulos:
I think after we rekindled our friendship, because we weren’t lovers when we were younger. Unfortunately for me, Claire didn’t know what was going on.
Claire Jensz:
No.
John Raftopoulos:
So once we’d spent about six months together back in 2016, I thought, wow. And we both looked at each other. There’s so much here in both our lives, and more in Claire’s. Why don’t we talk to a publisher? And then we spoke to a publisher in Melbourne and they said, “This is great. Can I buy the story off you?” And I said “No.” And then we looked at each other and said, “Let’s just do something more, and let’s try and write a screenplay.” And then I started with the basics. And I always hoped, and I never gave up that we would get to this point. And it still took three or four years of throwing the script around to anyone that had bothered to read it. But we stuck to the story, probably too much in the initial stages.
Claire Jensz:
Yes, we did.
John Raftopoulos:
But then we took that license to get to where we are today.
Claire Jensz:
Make it more cinema worthy.
John Raftopoulos:
Yeah, more cinema worthy. So I think we did that.
Claire Jensz:
Yes.
Jeremy Henderson:
Excellent. Claire, what are the messages that you hope audiences will take away from the film?
Claire Jensz:
The biggest things I’d like to impart were education. No, firstly awareness is the biggest thing, trying to make people understand the disease, and know it’s really a real thing and it’s pretty harrowing. And the second thing is, education, that we understand what happens to us. And third thing, hope, because I think people think MS is like a death sentence, and it’s so not. There’s so much life still to go, and life can just be changed. It’s a changed life, not a different, just changed. So you can still live a very full, happy, fulfilling life, always, just different.
John Raftopoulos:
I think a lot of the things, their hidden symptoms.
Claire Jensz:
Yeah, true.
John Raftopoulos:
You said that initially, that you can’t see it.
Claire Jensz:
Yeah, it’s a very isolating disease, because people don’t know what’s going on, ever. So you feel very feel different to everyone else, because you are, but it’s not a bad thing. It’s just different. So I think you reassess your life a lot, and you see what’s important and what isn’t. I think in a way, perhaps things that have been bad for you and have not worked for you, you let them go. If they haven’t worked for you, just move on to the next stage. So things at work, my job was a bit stressful. It was a very stressful job I had. So in a way, it probably didn’t suit me. So in a way going forward, I’m glad I have a more of a relaxed, calmer life now, because I can.
John Raftopoulos:
Well, I think in the initial stages when Claire and I got together learning those symptoms, or how Claire’s mind worked and how her body worked took me a while. And stress is not a good thing. The first half of the day she races out of the blocks, but the second half of the day she’s always very tired, so I had to learn that. And she used to sleep for an hour or so in the middle of the day when we were first together.
Claire Jensz:
Not now though. I got over that.
John Raftopoulos:
Not now. Yeah.
Claire Jensz:
It’s good.
John Raftopoulos:
Because since we’ve moved to this part of the world six years ago, there’s been some improvements for sure.
Claire Jensz:
I’ve been calmer, and so I’m actually less stressed.
John Raftopoulos:
Yeah. So being in a busy city wasn’t good, and Claire can’t really drive anymore.
Claire Jensz:
No, I don’t drive now, much, little bits.
John Raftopoulos:
It’s better for… Well you drive the buggy down – that will do.
Claire Jensz:
That feels like my horse buggy. I do the horse buggy, no more. It’s not safe otherwise, but I think the driving stressed me out, and I should never have done it.
Jeremy Henderson:
You talked about that awareness raising piece.
Claire Jensz:
Yes.
Jeremy Henderson:
And Claire, I spoke to you earlier. I think MS Australia is so pleased to be partnering with you both and with the film, Take My Hand. And I think it’s because this is a film that has broad appeal. It’s speaking about universal things like love. It’s a film that appeals to a large, broad mainstream audience. Yet at the same time, we’ve got this opportunity to educate, and raise awareness, and explain to people what MS is. And as you said, it’s so different for everyone. And so many of those symptoms are invisible. So it’s not an easy condition to understand.
Claire Jensz:
No.
Jeremy Henderson:
Talk to me Claire, about your drive to give back to the community and to raise awareness of MS.
Claire Jensz:
I guess MS, it’s a very isolating disease. And because it’s so missable, people don’t see what’s wrong with you. So people think you’re either drunk, because you can’t walk very well, and I get really cross because I’m not drunk, but then I just need to-
John Raftopoulos:
Slow down a bit.
Claire Jensz:
And talk too fast too. I need to slow down. I have this habit.
John Raftopoulos:
Slow down. Yeah.
Claire Jensz:
Because my brain gets things so fast, I want to say it fast so I don’t forget it.
Jeremy Henderson:
To get the information out quickly.
Claire Jensz:
So I need to rush it, so I don’t forget what I was going to say. So it’s a very frustrating trait I have. People tell me they have to get into my rhythm, my speech, because they can’t hear what I’m saying. It’s going so fast they can’t understand my thought process, but now if I slow it right down, it’s better. I’m trying to do that. Not doing very well, obviously.
John Raftopoulos:
That’s all right. No, you’re doing well.
Claire Jensz:
I’m trying, but it’s not great. I want to give it back to the community to help us, and just understand what goes on, and just be more mindful of what happens to us. So things just like walking around. I have a stick when I walk around, because a lot of times the stick is to make people aware that I’m sick, because people walk into you, and don’t know you’re going to fall over. And I fall over so much. So in a way having a stick is more of awareness, to show other people, don’t bump into me, rather than actually I need it to walk. More to stop people bumping into me, because I fall over easily and break things, which is not good. What else?
John Raftopoulos:
When Claire was still driving, we bought her a little blue car, a light blue car, so she could find it.
Claire Jensz:
Right, because my eyesight’s got really bad too over time. It’s got very, I can’t tell colours now. I don’t see colours much. So I see colours, all the same colours. Cars look the same colours.
John Raftopoulos:
Partially colourblind. Yeah.
Claire Jensz:
So I just can’t see many colours, so it was a bright blue, so I can find it. Or red I can find, blue I can find. Black and white, forget it. Can’t see it at all. So it has to be very bright colours I can find. It’s not very safe, but true.
Jeremy Henderson:
John and Claire, I wonder if we can go back to the movie. And I think you alluded to this a minute ago, but how hard was it to get this movie made?
John Raftopoulos:
Very.
Jeremy Henderson:
So John, if we can talk about your background, because before this process started, you weren’t a script writer.
John Raftopoulos:
No, I wasn’t in film. No. So I was in the wholesale fruit and vegetable game with my family business. I always loved film though, and a mad football player, supporter. And had that. The amateur football career was big, but film was something I loved dearly. And anytime any of my friends who were in film had a chance, there was a chance to be an extra, I jumped at the chance. But that old adage of, sometimes you just fall into things. I’ve definitely fall into this.
Once you’re by yourself in a room for three or four years, and you get to know yourself, what to do in front of a computer with a story and something that’s in your head. And if you’re passionate about it, which I was and still am, you’ll do it. It’s hard, and once you start reading things online about how hard it is to get a screenplay written, to get anyone to listen to it, to make a movie, some of those figures just kill you. And you’ve got to take your mind off that and just go, “No, we can do it. Let’s just concentrate on what we’re trying to do.”
Jeremy Henderson:
I think you mentioned earlier that someone had offered to buy the story from you.
John Raftopoulos:
Yeah, there was a bidder. Yeah.
Jeremy Henderson:
Was it at that point where you said, “We’ve got something really good?”
John Raftopoulos:
Yeah, that’s exactly right. I think at the time I thought, wow, if he’s prepared to give us that at this stage, I’d hate to let it go, because there’s a lot more we can put into this. And Claire and I can give it this story, and it went from there. And then COVID happened, and we went overseas, and people weren’t shooting here in Australia at the time. So we found some people in America that helped us along with development, but then it didn’t really work out. And then Bronte Films came along, and they-
Claire Jensz:
Here we are.
John Raftopoulos:
… got it done, and here we are.
Jeremy Henderson:
As that turned out, you’re probably happier that you got that chance to film the Australian-
John Raftopoulos:
Yeah.
Claire Jensz:
Totally.
Jeremy Henderson:
Places here at home?
John Raftopoulos:
Definitely.
Claire Jensz:
Yes, much more.
John Raftopoulos:
Definitely. We got to use some of our horses.
Claire Jensz:
Our own horses.
John Raftopoulos:
And shoot in our own country, and especially around where we live.
Claire Jensz:
Yeah.
It’s beautiful there.
John Raftopoulos:
We went to the UK as well, but-
Claire Jensz:
For some of it, yes.
John Raftopoulos:
But yeah, it was just amazing.
Jeremy Henderson:
Tell me about that. So the film was shot over nine weeks in Byron Bay and in London. You’re both on set every day?
Claire Jensz:
Yes.
Jeremy Henderson:
Yep. Claire, I imagine that was a fairly intensive process?
Claire Jensz:
It was quite tough for me, because I get tired easily, obviously. But I was determined to see it, and determined to help out with everything MS related, and I did that. And also to work with Radha, which was great to work with. And just the whole experience, I didn’t want to miss it. It was so special to be involved. I’m not going to miss this. Even though I’m tired, I just had a little naps here and there, and just tried to make it work, and I did. But it was an extraordinary experience. And I thought, it’s a one-off, and it was fantastic. I loved it, every minute of it.
Jeremy Henderson:
And you’re working on set, you’re a consultant obviously to the film.
Claire Jensz:
Yes.
Jeremy Henderson:
And you are working really, really closely with Radha Mitchell?
Claire Jensz:
Yes, I was. Yes. She was great. She understood her team.
John Raftopoulos:
Yeah, Radha was good, but Radha wanted to know the background of Claire’s working life.
Claire Jensz:
Yeah. She’s very interested in investment banking. She says, “How does investment banking work?”
John Raftopoulos:
Well, but she needed that.
Claire Jensz:
How bizarre.
John Raftopoulos:
Because in those scenes, she wanted to know where that look she was giving in those moments of power, and that smart, brain and how she got to where she got in her career, and what Claire’s day was all about, and how stressful it actually was. So we did a bit of work before we started in the pre-shoot time we had. And she was keen to know everything.
Claire Jensz:
She was.
Jeremy Henderson:
How involved were you both in the casting decisions?
Claire Jensz:
John more so.
John Raftopoulos:
Well, I was, with Greg Apps and Blake, the three of us. And then Claire popped in…
Claire Jensz:
Here and there.
John Raftopoulos:
… was there every step of the way as well. We had to find a young version of Claire, and we had to find a young version of me, and then the old one. And then someone to play Claire’s husband. And that was fun. We actually found Bart Edwards, who stars in The Witcher now. He was the first person out of the blocks in a video that read anything back to me that I’d written. And it was him, out of the 500 or 600 that we ended up seeing, he was first-
Claire Jensz:
And best.
John Raftopoulos:
And we carried him all the way from that first audition to the film.
Claire Jensz:
Yeah.
John Raftopoulos:
We said, we’re just going to keep him. It made Claire-
Claire Jensz:
He gave me chills when he did his audition.
John Raftopoulos:
He gave Claire chills.
Claire Jensz:
And his audition too, was on Zoom… Zoom?
John Raftopoulos:
Yeah.
Claire Jensz:
And back in Zoom days, he was in a cupboard basically for the audition.
John Raftopoulos:
A little cupboard, yeah. Yeah.
Claire Jensz:
And he had little props he made himself. And he had little props-
John Raftopoulos:
He grabbed a-
Claire Jensz:
like a bottle.
John Raftopoulos:
A bottle of alcohol, and pulled the cork out with his mouth.
Claire Jensz:
It was very authentic sort of behaviour. And watching it was like, oh, my gosh.
John Raftopoulos:
Which was like Mark.
Claire Jensz:
It was so real. It’s like he got the whole concept so fast. I thought it was really quite spooky.
John Raftopoulos:
Well, that said a lot to me that-
Claire Jensz:
He made me cry.
John Raftopoulos:
And that spoke to us.
Claire Jensz:
And I thought, Wow, he’s good on Zoom.
John Raftopoulos:
He’s the guy for Mark’s role. And then the role for Laura was a bit more challenging.
Claire Jensz:
Yeah, that was hard. Because Laura’s role had to span decades, and so her role was hard to convince your cast.
John Raftopoulos:
And that changed too. That changed too, once we got to Radha. We had to change the script around a little bit to suit her age, and where we’d start the film in the second act.
Jeremy Henderson:
How is it for you both seeing these other people, essentially, so in your case Radha Mitchell, and in your case, John, Adam Demos, how is it seeing these actors portraying your life, and your story?
Claire Jensz:
It’s a little bit spooky, but it was fun. I laughed a bit.
John Raftopoulos:
At one point, we left the names in the script of John and Claire. And when we took that out, as a director, I had to separate myself from us.
Claire Jensz:
It was easy, yeah.
John Raftopoulos:
So I had start talking about Michael and Laura. And that helped, because you’re talking to the actor. And I don’t want to say now when you’re saying John, and I’d say Michael. And Adam was very professional. He’d done a lot of work in the States.
Claire Jensz:
So was Radha.
John Raftopoulos:
Radha was too. Yeah, of course, but… Well, you talk about Radha’s, why she took it on.
Claire Jensz:
Radha got really deep into it. She wanted to be very authentic and very, …how things felt. There was, can I mention the sex thing? Can I do that?
John Raftopoulos:
You can say whatever you want to.
Claire Jensz:
Okay. So there were some scenes that were cut actually, in this actual movie, but there’s some scenes that we had initially shot that were sex scenes. And she was actually very curious how it all would work, because of being unwell, meaning how it changes things.
John Raftopoulos:
MS patients, it can be hard for them.
Claire Jensz:
Yeah, sex is difficult when you-
John Raftopoulos:
Yeah, sex can be difficult.
Claire Jensz:
… have MS. So she was like, “How do you do this? How do you do this?” She’s like, try and show me. We were actually on the bed in a film room.
John Raftopoulos:
The four of us, yeah.
Claire Jensz:
The four of us in the bed, trying to redo things. It was a bit surreal. I was showing, “And I do this, and I do this.” And so luckily it was not shot. That was not shot anyway, but it was talked about a bit. It was quite funny. We laughed a lot. It was funny. It was a bit awkward, but funny.
John Raftopoulos:
And I think she put her own take on Claire’s speech problems.
Claire Jensz:
Yeah, she did. It was funny.
John Raftopoulos:
And she listened to Selma Blair online, and then Claire-
Claire Jensz:
Yeah, good friends.
John Raftopoulos:
And a bit of that, missing a few vowels, and-
Claire Jensz:
The vowels, and-
John Raftopoulos:
Key consonances, and-
Claire Jensz:
When you see her speech, when she tried to change her speech to a new one. Well, I won’t do her speech. She does, but it’s still quite-
John Raftopoulos:
And the walking, and the blurred vision. Everything, all those symptoms.
Claire Jensz:
She got little bits of it in a different way, but I think it was authentic. I hope you can see it in the movie. I think it was quite cute.
John Raftopoulos:
With all the MS patients there are, and all the different types of MS there are, we could make a film that-
Claire Jensz:
Everything’s so different, MS.
John Raftopoulos:
You can make 150-hour film, really of all the different things.
Claire Jensz:
No one’s MS is the same, no one.
John Raftopoulos:
No.
Claire Jensz:
It’s always different.
John Raftopoulos:
We did concentrate on what we had.
Claire Jensz:
Yeah.
Jeremy Henderson:
Claire, was it intrusive or painful to share some of these darker moments of your life with an audience? And what was that like bringing up some of those?
Claire Jensz:
What’s intrusive? Not intrusive, more just, I cried a lot, because I had to relive each event. And it was years ago now. Mark died over 10 years ago now, but it brought it back each time, because I had to explain how it felt, and how the whole change had been, and the kids and things. Even now, I might cry, but I’m not going to, but I think I might. [inaudible 00:17:24].
John Raftopoulos:
That’s all right, darling. It’s all right. I think some of the moments when you’re in hospital at your worst, I remember when we were shooting those days, and you telling us about how the times where you couldn’t even see, and you couldn’t get out of a chair.
Claire Jensz:
Because MS, when you get a really bad attack. My attacks were so enormous and so damaging that I couldn’t, I was basically, I wasn’t dead, but I was half dead in bed. I couldn’t move a muscle, couldn’t move, couldn’t see, couldn’t hear, couldn’t speak, couldn’t do anything, couldn’t eat, couldn’t go to the toilet. I was like a dead person, and it was horrible. So when you go through those emotions again, in a way, it’s like reliving it each time, and it’s quite hard to do. But I guess it’s a good thing, and I’m better now, which I’m very, very grateful for that. But I know it’s something that-
John Raftopoulos:
Yeah, we’re grateful for what we have now.
Claire Jensz:
Yeah, I’m very grateful for how I am now, because it was really dark back then. In England. I was much worse than ever. So those days were really dark.
John Raftopoulos:
That’s the thing about this, Jeremy, and whoever’s listening to this is that you look at Claire and you listen to her. She can talk and she sounds like everyone else, but she’s not.
Claire Jensz:
I’m not.
John Raftopoulos:
The cognitive stuff is quite difficult, because it’s frustrating for Claire. The myelin sheath damage has been so significant over the years, that now she forgets things a lot. And she thinks what she’s saying to me is making a lot of sense, and it’s not. So it’s hard for me too. It’s hard for all the carers out there that go through the same thing. So I’m talking to them now, because I am a carer.
Claire Jensz:
Yeah. Yeah, you are. But also, John has to deal with a lot of my, I forget things, and I say things twice, or I say things 18 times. And I think he just must get very frustrated. You do, sorry. I know you do, but you’re very patient about it, because it’s very tough on him too. So the carers have to deal with a lot of annoying patients, I guess.
John Raftopoulos:
I think we went off.
Jeremy Henderson:
Oh, no. It’s almost as if you’re anticipating the questions before I ask them.
Claire Jensz:
Good.
John Raftopoulos:
Sorry.
Jeremy Henderson:
No, that’s excellent.
Claire Jensz:
Yes.
Jeremy Henderson:
Claire, there’s a line in the film, Laura is told, “Focus on what you can do rather, than what you can’t.”
Claire Jensz:
Yes.
Jeremy Henderson:
Which I loved. That message to focus on the positives, the aspects of our lives which we have control over, and the things that we can do. How important is that message to you? Has that informed your attitudes, and impacted the way you live your life?
Claire Jensz:
First I want to point out, that comment from a doctor was a true line to me. A doctor, my-
Jeremy Henderson:
The neuro.
Claire Jensz:
… neuro said to me, “Claire, focus on what you can do, not what you can’t.”
John Raftopoulos:
Helmut Butzkueven.
Claire Jensz:
Helmut Butzkueven said those things to me, and it was actually quite profound. Because I thought to myself that there are things I can do, and hence being here on the farm, riding a horse, and looking at my chickens and my cats. I can do those things. It’s not too arduous for me, so I can actually do those things. But things that are too tough, like driving, I don’t do that, because I can’t do that. But things that give you joy. One doctor, I said to me once, “Look for joy, and grab it.” So things that really I enjoy and I feel joy from, I try and focus my life on that now. Not things that make me sad and what I can’t do, because a lot of things I can’t do, which really annoys me, but I try to do things I can do that can give me joy and happiness, whenever possible.
Jeremy Henderson:
Beautiful. We can come back to the movie again. So I’ve got a question for you both. And John, you’ve alluded to this already, the fact that the movie isn’t exactly the way your life went. I wanted to ask you, how hard is it to translate a life lived to a script and to the screen? To decide what stories get told? What gets cut? What gets massaged in the interest of that dramatic effect, and storytelling, and the conventions of film structure. How do you make those decisions? One of the reasons I asked that is because I read the lovely article in the Australian Women’s Weekly, that you know, because it’s about you, and it’s a beautiful interview. And I read that ahead of the interview this morning. And one of the things that struck me was, because I’ve seen the movie, but I read your actual story and thought, wow, that’s just as beautiful a story. It’s a different story.
John Raftopoulos:
Well, that’s the one that originally was written. That was the first thing that was written. What you read this morning was where I started it. I started it from scratch, and it was a hundred percent true. And then someone sent some notes back to me and said, “John, when you see a movie, at the start of the movie, it doesn’t say, “This is what actually happened.” It says, “Based on.” You have that license, and sometimes just to serve the story in the best way possible, you have to take that license. And I learned that over time. And I had people to collaborate with, and I had some great people. And Blake steered me in the right direction, obviously, the producer.
And then we met some great people in development phase. And look, people that are listening to this, or who have written scripts, you start one place, you write it. And someone looks at it, it gets changed, everyone’s happy with it. Then you take it to set, and they changed it again. So even that happened as well. So you’re going, “Where did I start?” You forget where you started, because it’s what feels… When the words come out, then you know. And the set makes you feel differently as well.
Jeremy Henderson:
Were there changes that were hard to make, or pieces-
John Raftopoulos:
Unbelievably hard.
Jeremy Henderson:
… that were hard for you to let go?
John Raftopoulos:
Yeah.
Claire Jensz:
His babies.
John Raftopoulos:
Well, in the development process, some of the scenes that we’d written were, because how we actually met, it’s not even in there, and when we re-met.
Claire Jensz:
We re-met, yes.
John Raftopoulos:
So Claire was 40, and I was 40. No one knows. Not many people know this. I took my daughter on a Sunday morning to get some ice cream, or midday Sunday. And I out of our car, and walked in this ice cream shop. And I saw out of the corner of my eye, this woman and three young children. And I looked back, and it was Claire. I hadn’t seen her in 20 years at the time, or 18 years. And I saw, obviously that’s her husband. And I was nervous, and I ran into this ice cream store. And my daughter said, “What’s wrong?” And I said, “That’s Claire out there.” “Who’s Claire?” “I’ll tell you later.” And I thought I’ll go and say hello. I said, “If she looks up, I’ll say hello.” And I walked past Claire. I was two inches away. And I said, “If she looks up, I’ll say hello. If she doesn’t, I won’t.” And she licked her ice cream, and she looked down, and I walked straight past her, and I didn’t say anything. And that’s-
Claire Jensz:
That’s sliding doors.
John Raftopoulos:
I wrote that. We wrote that, and it would’ve been amazing. But you get in a collaborative experience, and seeing a room, “No. Gone. Gone.” A lot of the stuff we shot is gone, but we had some beautiful stuff that has to hit the cutting room floor.
Claire Jensz:
Yeah, the story changed throughout the actual shoot.
John Raftopoulos:
We had a lot of stuff that was devastating.
Claire Jensz:
A lot of scenes were cut.
John Raftopoulos:
In the edit, that was really tough.
Claire Jensz:
Yeah, it was.
Jeremy Henderson:
So, John, can I ask you, when Claire went overseas, did you ever imagine that your paths would cross again later in life? Is Claire somebody you thought of?
John Raftopoulos:
Always. Always. When she told me, after modelling in Japan, she came back and we went out for a coffee when she was about 23. And it was good to see her, “I’m going to England now.” And I went, “Ah, Jeez.” And I had to act cool. “Oh, that’s really good.” And I was devastated.
Claire Jensz:
I didn’t know.
John Raftopoulos:
And then she’s like, blah, blah, blah, blah, blah. And then she left. And then I think the next day she came and watched me play football. And I saw her talking to one of my friends. And I was playing this football game. And then I saw her, and then she walked off. And I remember watching her walk off going, “Oh, God. I can’t believe she’s gone.” And I just thought, “She’s gone now.”
Claire Jensz:
I was then.
John Raftopoulos:
Well, you were. And I didn’t think I’d see her for a long time, because I knew that her career would flourish, but you just never know.
Claire Jensz:
You don’t know.
John Raftopoulos:
You just never know in life, I guess.
Jeremy Henderson:
But Claire, I think you’re on the record of saying you had this great friendship, but you didn’t realize. You didn’t appreciate that-
Claire Jensz:
I didn’t. I had no idea.
Jeremy Henderson:
That John felt this way. Was he just not good at-
Claire Jensz:
Telling me? He didn’t-
Jeremy Henderson:
Showing it?
John Raftopoulos:
Clearly not.
Claire Jensz:
Actually, I thought that we were best friends. I really believed we were just good mates.
John Raftopoulos:
Oh, please.
Claire Jensz:
To the point that we were going to be friends, we came together, for friendship things to do, like balls, and pubs.
John Raftopoulos:
Oh, I used to take you to balls, and-
Claire Jensz:
Well, I just didn’t realize. I had no idea. And it sounds idiotic, but I didn’t know.
John Raftopoulos:
I didn’t know what to do.
Claire Jensz:
I didn’t.
John Raftopoulos:
I had no idea what to do.
Jeremy Henderson:
But here you are now.
Claire Jensz:
Thank you. We are now here, so we did it.
John Raftopoulos:
But I did hear when Claire got sick. I heard from her friend, our mutual friend in Melbourne. And she bumped into me in a bar in the early 2000s. She’s like, “She’s got MS.” And she told me everything. And I was like, “Oh, my God.” I couldn’t believe it. It was just like, wow. And she was talking about her own wedding, Felicity. And she said Claire’s just hoping that she’s going to be able to a walk-
Claire Jensz:
And I did go to her wedding.
John Raftopoulos:
… out of her wheelchair and be her bridesmaid.
Claire Jensz:
And I was.
John Raftopoulos:
And you did, yeah.
Claire Jensz:
With a stick.
John Raftopoulos:
Yeah. And that was it. Through no one else. I didn’t want to ring her. I didn’t want an email. I didn’t want to ring your dad.
Claire Jensz:
There was no email then? Too long ago? No email then?
John Raftopoulos:
No, not in the early 2000s.
Claire Jensz:
Okay there was. I don’t know. Okay. I didn’t know that. Right.
John Raftopoulos:
Anyway.
Jeremy Henderson:
In the film, when Laura and Michael reunite, there’s a sense that Laura is far less certain about a future together, and conscious and aware of not wanting to be a burden. And in the movie, and I understand the movie’s not necessarily what actually happened. But in the movie as it’s portrayed the character, Michael, has no question. He seems much sure, much more certain that you can navigate that journey safely together. Is that-
John Raftopoulos:
That’s a hundred percent true.
Jeremy Henderson:
It’s so true. It’s so true. John’s far more braver. You’re far more okay with everything. I’m much more-
John Raftopoulos:
We’ve had sickness in our family too, so-
Jeremy Henderson:
You’re very brave.
John Raftopoulos:
My dad was sick for a long time. My mom died when I was 10. I lost my sister when she was only very young. So we’ve had a bit of tragedy, but it was Claire. To me, it was Claire. It didn’t matter. It was actually, Claire could be my girlfriend, possibly wife. I don’t think anything else mattered. And in that first six months I saw everything that could go wrong, so really
Claire Jensz:
Yes, you did.
John Raftopoulos:
Things that really went wrong.
Claire Jensz:
You did.
John Raftopoulos:
And a few accidents and disasters, but it didn’t matter, because we’d still chat, and we still do today, like we were when we were 15, 16. I don’t know why it is, what it is.
Claire Jensz:
We just chat a lot.
Jeremy Henderson:
Who would you describe as the most hopelessly romantic?
Claire Jensz:
John.
Jeremy Henderson:
John?
John Raftopoulos:
That’s me.
Claire Jensz:
In a heartbeat. Yeah, it’s John.
Jeremy Henderson:
So another question then. Do you both believe in this idea of romantic love, the idea of a soulmate, or destiny?
Claire Jensz:
I like the idea of it. I hope it’s true.
John Raftopoulos:
I think it just is darling. It just is.
Claire Jensz:
Here we go again. I’m not sure.
John Raftopoulos:
It just is.
Claire Jensz:
You are totally-
John Raftopoulos:
It just is.
Claire Jensz:
Okay, he’s adamant.
John Raftopoulos:
Claire doesn’t quite…
Claire Jensz:
I’m more-
John Raftopoulos:
She gets it, but she doesn’t sometimes.
Claire Jensz:
I’m scientific. I think there is.
John Raftopoulos:
Claire’s very factual. Claire’s very black and white.
Claire Jensz:
I am, yeah.
John Raftopoulos:
And I can live in the gray.
Claire Jensz:
You’re gray. I’m not. I’m trying to be more gray in life. Actually, I find it both ways.
John Raftopoulos:
Well, you just made a film, so you have to live in the gray.
Claire Jensz:
I’ll have to become gray. I’m going to be gray. It’s good. Yes.
Jeremy Henderson:
So you talked about your family, three sons, and-
Claire Jensz:
Yes, one daughter.
John Raftopoulos:
A daughter.
Jeremy Henderson:
So you have this blended family.
Claire Jensz:
We do.
John Raftopoulos:
We do.
Jeremy Henderson:
So what do they think about this movie?
John Raftopoulos:
Oh, they love it.
Claire Jensz:
They do.
John Raftopoulos:
Yeah.
Claire Jensz:
It’s amazing.
John Raftopoulos:
Because they see themselves up in it.
Claire Jensz:
But we were worried initially. We thought when they first see it, we thought the boys might get a bit-
John Raftopoulos:
How their dad was portrayed.
Claire Jensz:
They saw their dad, and didn’t like it.
John Raftopoulos:
I think he was portrayed pretty well.
Claire Jensz:
He was. And then we thought they might find the whole event quite emotional, and cry and things. They were perfectly okay with it.
John Raftopoulos:
No, they-
Claire Jensz:
They enjoyed it.
John Raftopoulos:
But we’ve had eight years to blend as a family. The first couple of years was really hard.
Claire Jensz:
Yes, it was.
John Raftopoulos:
The oldest two. So James, the oldest of the boys and my daughter had a really tough time, the first two years. The jealousy was just-
Claire Jensz:
Immense.
John Raftopoulos:
It was just crazy, in that first time.
Claire Jensz:
Not of us.
John Raftopoulos:
Well, of us.
Claire Jensz:
Of me and her.
John Raftopoulos:
Because Alex had had me to herself, and the boys had had their mom, and then now, boom.
Claire Jensz:
They didn’t like the intruders. “Why are they here? Why are they here?”
John Raftopoulos:
And they were only 12, 13 then. They’re in their early twenties now. Alex is 27 now.
Jeremy Henderson:
In the movie, Laura, like you Claire, has a love of horses and riding. How important are horses? Both when you were growing up, but now in your life today?
Claire Jensz:
See, when I was growing up, this is the way the story is just a little bit… Can I say this? It’s a little bit made up, yes.
John Raftopoulos:
Well, we took license when you were younger. But the thing is, darling, you did. You’d ride horses when you were 18, 19.
Claire Jensz:
I rode horses when I was young, but I didn’t ride all the time.
John Raftopoulos:
No, you’re still jealous of the girls that rode when they were 10 or 12.
Claire Jensz:
I was. Yeah, I was. I still am now.
John Raftopoulos:
Claire didn’t ride when she was 10 or 12.
Claire Jensz:
We didn’t have those sorts of things. We didn’t do riding in those days.
John Raftopoulos:
Well, you rode when you were young. It’s still 18, 19, 17.
Claire Jensz:
Yeah. Yeah, yeah. When I was a teenager, I rode then, but not all the time, just occasionally. I just loved it. It was okay. No lessons, just okay, but I just knew I just wanted to do it again. Or anywhere I went, there was horses I rode. And I just had this weird fascination with horses.
John Raftopoulos:
A connection. You had a connection with them.
Claire Jensz:
There was aa big connection, straight away. And even now, because my illness, I’m not good now. I’m okay, not good. But I just think that I have this, and I think it goes back decades or even centuries, this need to be near a horse. I can understand. Girls who rode a lot think that too, that this need is-
John Raftopoulos:
Because they love unconditionally.
Claire Jensz:
Yeah. And it’s actually quite, it’s innate.
John Raftopoulos:
They love unconditionally. That’s what it is.
Claire Jensz:
Yeah, they do.
Jeremy Henderson:
John, do you share this love of horses?
John Raftopoulos:
No. I used to just bet on them, so not really.
Claire Jensz:
In the old days, yes. Not now.
John Raftopoulos:
No, I didn’t have. Just with my mates in Melbourne, but then Claire, when we met, we just talked about horses all the time, but she can’t ride anymore. “I can’t ride. I can’t ride. I’m not strong enough. I’m strong enough.” And then when we got up here seven years ago, I said, “Why don’t we just try?” And then, “No, I can’t. I can’t, I can’t.” And then I talked her into it. And then she went for a ride, and she cried after the ride.
Claire Jensz:
I did.
John Raftopoulos:
And we haven’t looked back. So now Zephyr Horses is half ours, where there’s a woman in town we’re in partnership with. And in Byron, there’s 37 horses there. And there’s trail ride business. But we’ve got some of our own here. And Lisa Wiley that looks after us, is just amazing. She used to work at Zephyr.
Claire Jensz:
She’s a stunt girl in the movie too.
John Raftopoulos:
And she’s the horse-
Claire Jensz:
She’s a brilliant rider.
John Raftopoulos:
The real horse rider in the movie.
Claire Jensz:
Yeah, it wasn’t me. It was her. Yeah.
Jeremy Henderson:
Is there something therapeutic about horses?
Claire Jensz:
Oh, totally. I, a hundred percent believe that it’s actually… It’s not innate. It’s quite, it’s… I can’t think of the word. I don’t know. I can’t find words. Sorry. It’s so powerful being near a horse that I feel just happier. I feel more content, more able. Around my horse, I feel stronger-
John Raftopoulos:
Calmer.
Claire Jensz:
Yeah, calmer. But on a horse, I feel like their legs are like my legs. And it sounds kind of crazy, but it’s true. I feel, I can do anything now. I can walk, I can do this, I can go up a hill. No problem. I won’t fall over here.
John Raftopoulos:
And that’s what we tried. We shot that in the film as Radha coming out of the water that, that’s her legs.
Claire Jensz:
Because I can’t. If I go in the water, I can’t get out of water. I can’t climb out of water. My legs don’t do it, but a horse just drives out of water, and they’re totally okay with it. And I feel very empowered by that, which is, it’s true.
John Raftopoulos:
It’s true.
Claire Jensz:
It’s beautiful. I love it.
Jeremy Henderson:
Claire, I wonder if we can just come back to MS. And as somebody who’s lived with MS for many years-
Claire Jensz:
25, yeah.
Jeremy Henderson:
What do you know now that you wish maybe you had known when you were first diagnosed?
Claire Jensz:
See, the thing, when I was first diagnosed back in 1999, so a long time ago now, 25 years, I back then thought I’d be in a wheelchair straight away. I thought a wheelchair was going to be immediate. And I didn’t realize you could actually live life without one. I didn’t realize you could have MS for a while and not be sick in a wheelchair at all. So I wish I knew that earlier. And secondly, I wished I’d known that the drugs I was taking initially could get… Well, I know they’ve evolved and get better. Now they’re much better. The drugs initially were really hard, and they made me feel very sick all the time, which is not fun. They’re better now.
John Raftopoulos:
What were those drugs then, darling?
Claire Jensz:
The first drug was called Interferon. And Interferon was actually, people have taken, I’m sure they know that it’s quite, well for me at least, the side effects were quite strong. And every other day, I’d be chronically sick. And then I had chronic headaches every day, and it didn’t really pass. And so when I had babies, I didn’t realize actually, being pregnant was one thing, but I thought the baby made me feel healthier, but in hindsight, the drugs were no longer in me. I had no stimulants, I had no side effects. I felt, oh, being pregnant is the best thing ever. As soon as I got not being pregnant, I went back on drugs and got sick again. Ah, it actually was the drugs that did it, not the babies.
John Raftopoulos:
So you took the risk of-
Claire Jensz:
Took the risk, yeah.
John Raftopoulos:
Claire took the risk of having children. And the effects of that, after the third child, the body said-
Claire Jensz:
Said, “I’m done.”
John Raftopoulos:
“We’ve had it.”
Claire Jensz:
We can’t do any more of this. It’s not good.
John Raftopoulos:
With Mark’s death, and the stress of his company sale and all those things that were happening at that time, I think Claire, MS caught up to her.
Claire Jensz:
Yeah, it did. It caught me up. Yeah, it did in a rough way.
John Raftopoulos:
In 2006, when you had the biggest attack.
Claire Jensz:
In 2006 I really had horrible attacks.
John Raftopoulos:
That moment in the film when Jason dies and Laura has her attack is, we were trying to show that time. It was actually, things looked like they were at their best, but they were at their absolute worst.
Claire Jensz:
It was so bad. I tried to kill myself. It just was a really horrible time. It was really dark, horrible times then. It was not good. I couldn’t actually kill myself, because I was too sick to even do it, but I tried, but I couldn’t do it. It was just a horrible time. It was really dark days, but yeah, I came out. Thank God.
Jeremy Henderson:
Since you’ve been working on the film, have you connected with a larger community of people with MS? Have people reached out to you?
Claire Jensz:
Well, this is the thing. I would like to have met more people with MS. Where we live now, the MS community here is not very big. In fact, it’s zero. So my best friend-
John Raftopoulos:
There’s a few around here.
Claire Jensz:
A few, but not many.
John Raftopoulos:
I think what you’re doing right is something that you could do in the future.
Claire Jensz:
Yeah. I’d like to do a chat thing.
John Raftopoulos:
I think you should connect with a lot of people.
Claire Jensz:
… With more MS people, because I think it’s a-
John Raftopoulos:
They just want to talk about it.
Claire Jensz:
Yeah, just to share their stories, they’re actually quite delighted.
John Raftopoulos:
We did for a while. We went into Blackburn Center a few times.
Claire Jensz:
In Melbourne, yes.
John Raftopoulos:
Yeah. We went in there quite a few times, and we met some great people there.
Claire Jensz:
We did then.
John Raftopoulos:
Yeah.
Claire Jensz:
But here in the countryside, there’s not really a group to join here.
John Raftopoulos:
Well, it’s just a bit harder to connect. And we’ve only just come here, so-
Claire Jensz:
Got here.
John Raftopoulos:
And maybe with the film, hopefully we’d love to hear from a lot more people with the disease.
Claire Jensz:
Yeah, because I think the MS people need to have a voice, and to share their stories. It’s very cathartic to share your story. You feel heard again, because I think in life with MS, you don’t get to talk much.
John Raftopoulos:
Some of the people we’ve met, I mean…
Claire Jensz:
Some people have got a really bad, really… I can’t say that, can I?
John Raftopoulos:
We’ll talk about it another time.
Claire Jensz:
Yeah. No, yeah.
John Raftopoulos:
Yeah. It’s been amazing. Some really, truly inspiring people we’ve met through MS Australia.
Claire Jensz:
Yeah. Yeah.
Jeremy Henderson:
We’re extremely grateful that you’ve shared your story with us today.
Claire Jensz:
It was our pleasure.
Jeremy Henderson:
Both of you, Claire and John.
John Raftopoulos:
Thank you.
Jeremy Henderson:
I suspect your passionate advocacy for MS doesn’t start and end with this film.
Claire Jensz:
No. No, no.
Jeremy Henderson:
Take My Hand. Where to from here? And obviously the Australian premier is just one part of this larger puzzle. I imagine this movie is going to be screening internationally as well. But where to from here for you?
John Raftopoulos:
Well, I think we’re just going to see the feedback and the reactions from everyone. But we’d love to continue being a voice for MS, if we could, just to tell Claire’s story, and have others tell us their story. And just spreading that message of-
Claire Jensz:
Hope.
John Raftopoulos:
Hope. Or the current message from MS Australia of the early detection, and how important that is. And we’d love people to hear that. And we’d love to keep on keeping on. We don’t want to just say, “There’s the movie. See it.”
Claire Jensz:
No, no.
John Raftopoulos:
We’d love to take this further.
Claire Jensz:
Yes.
John Raftopoulos:
Definitely.
Claire Jensz:
I want to.
John Raftopoulos:
Some sort of role.
Claire Jensz:
I’m going to point something out now. There’s a chicken there, I call her Claire. She’s always lost, because I’m always lost. And she’s always here by herself, and she’s always lost. There’s eight chickens. There’s only one of them right there. She by herself, lost. There’s eight chickens. There’s one there by herself. “Where am I going now? Where am I going now?”
Jeremy Henderson:
We met your chickens when we arrived.
John Raftopoulos:
Oh, did you?
Jeremy Henderson:
And they were very friendly. One of them seemed to want to jump in the car.
Claire Jensz:
That’ll be Claire.
John Raftopoulos:
Yeah. Yeah, they are very friendly.
Claire Jensz:
She’s lost again.
John Raftopoulos:
Well, you’ll meet the horses a minute. They’re even friendlier.
Claire Jensz:
She’s right there.
Jeremy Henderson:
Excellent.
Claire Jensz:
She’s right there.
Jeremy Henderson:
Thank you both for your time.
Claire Jensz:
You’re welcome.
John Raftopoulos:
No worries.
Claire Jensz:
You’re very welcome.
Jeremy Henderson:
Thank you for joining us on The Raw Nerve. Thank you.
Claire Jensz:
All good.
John Raftopoulos:
Lovely. Thank you.
Voiceover:
Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
If you or someone you know is need of support, contact Lifeline at 13 11 14 or visit www.lifeline.org.au.
