Episode 7 - Claire Jensz: MS, friendship, love, and a Netflix film

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Transcript

Maddy: This podcast is recorded on the lands of the Wurundjeri people of the Kulin nations. We pay our respects to the traditional custodians of this country and elders, past and present. We extend our respects to any First Nations, Aboriginal and Torres Strait Islander people joining us today.

Larissa: Welcome to today's episode of No Spoons to Give, the podcast where we explore life's ups and downs with neurodivergence, chronic illness and disability, and we chat with the voices that make our community so wonderful. I'm Larissa from the Spoony community team, and I've got Maddy here with me.

How are you today, Maddy?

Maddy: I'm doing well. Having a good day. What about you?

Larissa: Love that for you. Yeah, I'm doing really well. The sun's out. I had a great brekkie, I'm caffeinated, and I'm ready to go. And I have got a good recommendation for you this week.

Maddy: Oh, please share.

Larissa: I think I'm a little bit late to the party with this one, but I have been reading, you'll be proud of me, I struggle to finish books. It's a book called, I Hope This Finds You Well, and it's by Natalie Sue.

One of my reading goals for this year was to read some more books that would actually help my busy ADHD brain actually switch off, and this book is exactly that. It's a witty and clever office rom-com about a woman who works in an office job that she very much hates. She does not get along with her colleagues, and she all of a sudden finds herself with access to all of her co-workers' DMs and emails, and she uses this intel to save her job.

It's a great holiday read, and if you just want something cruizey to read, it's, yeah, a great rom-com, and it had me cackling.

Maddy: That sounds amazing. Oh, I'm going to have to check that out, definitely.

Larissa: Yeah, it is a great holiday read. Have you got a recommendation for me today?

Maddy:

I do. It's a book, surprise, surprise, it's called Sitting Pretty, by Rebekah Taussig. It's a beautiful, nuanced, clever and thought-provoking memoir that's a series of essays that includes growing up as a paralysed person, disability representation in the media, and the complications of kindness and charity.

I found that my mind was so expanded by this book. I love books where you can just have your own ideas challenged, and you can really have a new perspective on different parts. So, such a good read.

Larissa: That sounds amazing and it sounds like it touches on so many different important topics as well.

Maddy: Really does. Today we'll be chatting with Claire Jensz, an executive producer whose journey with Multiple Sclerosis has been brought to life in a brilliant new film called Take My Hand. It's about a woman who was diagnosed with MS and moves back home to Australia with her sons following the sudden death of her husband, where she has a chance encounter with her childhood sweetheart.

Larissa: Welcome, Claire, and thank you so much for joining us today. We've been following all of the amazing work that you've been doing with Take My Hand and also the wider MS community, and we're so thrilled to be able to chat with you today.

Claire: Thank you. Thank you much. Thank you very much.

Maddy: So Take My Hand is such a beautiful film that really celebrates love and support, not to mention it's based on your real life love story and experiences with MS. I imagine it could be quite personal to have your real story told on screen. How much of the film represents your own story, and did the film take any creative license?

Claire: The film took a bit of licence in terms of timing of things because my MS diagnosis was actually before kids, not after kids. But we changed things to make the film work, make more sense and the film be more time wise. The time worked better. The whole thing is about my whole life and it's very confronting, a lot of it, too. I cried a lot making the whole film because I saw my diagnosis and I saw my illness as it progressed, and I thought it was actually quite challenging, I guess.

But we got through it and here we are. Now I feel I'm so glad it was made. I feel very grateful it was even covered and now it's been put out there in the world and I feel very, very satisfied with it too.

Larissa: And what made you decide to make the film about your experience with MS? It is such a personal journey. What made you want to make the film and spread the message of MS as well?

Claire: My husband wrote the story, he wrote the whole film and he also the director of the... And the book as well. And he wrote this, did the whole film, he's the director, and he wanted to put my story out there because it was quite a big story and he wanted to make it more well-known and to get more coverage of MS as well. He put my whole story to light now that it's being more well-known now, which is good. I hope they're getting more of a platform to MS, to be more present, to be more engaged with other people as well.

Maddy: Absolutely. And it was so fantastic to see that you partnered with MS Australia on the film. They do such a terrific job in advocating for people living with MS. I mean, I remember doing the MS Readathon so many years, it was fantastic. What made you decide to partner with them?

Claire: Well, as you say, the MS Readathon, I did it as a kid also, each year. I love reading. I love the whole Readathon challenge, so I think I had a soft spot for them already. And then they contacted us about, because the film was about MS, so partnering with them and us was actually almost perfect because they had the same ethos really about trying to get the word out there and be understood more. And also to understand people to get early diagnosis is quite key, and that was one of their stories and one of my things as well, so it combined nicely there.

Larissa: I also live with a chronic illness and I know that sometimes this can be quite isolating. Having a community that understands, I guess, your illness and how you interact with the world can make a world of difference. What has your experience been like with, I guess, like friendship and community and finding people that understand?

Claire: That's a very good point because I think it's a very isolating disease, as chronic diseases can be. I think finding people with the disease that understand you and that can share the hard parts of MS is critical, I think. So having a community involved in your life is critical, and having friends who know what's going on, because it's quite a hard disease to manage and to live with because often you'll cancel early on events, or you'll just not go, or you're too tired and go home to sleep. All the different things go wrong with MS. So it's critical, I think, having a community of other ill people as well.

Maddy: What challenges have you faced with friendships while living with a chronic illness? And do you have any advice that you would give to others on being a good friend to someone who's living with a disability or chronic illness?

Claire: Yeah. I think friendships, it's a good question, because I think when you get diagnosed with a chronic condition you find out who your real friends are, and not only clearly those are not your friends at all. So in a way, the whole process of culling friends happens automatically because people, they decide they don't like you anymore. You're too hard to deal with. Your disease is too ugly, or you're too much hard work, or you're not why they wanted to be friends with before because you've changed so much. It's actually quite enlightening what's important to people and who is your real friend. And so, in a way, like I said, it culls things by itself.

Also, what happens in that story also friends who beforehand perhaps weren't that good friends at all and then they become really critical friends because they understand you and they understand your illness and they're on your page, I guess, and you can discuss things quite openly, whereas other friends who you thought you were really good friends are no longer at all. So it tells you what goes on a lot. It's quite enlightening, I think, too.

Larissa: That would be a really hard experience to go through.

Claire: Yeah. Because also, people that you thought was your friend and they drop you like a stone. "Oh, okay so you didn't like me at all really?" It's quite confronting when someone you thought was your good friend. In fact, I was told at the very beginning, long time back in England, I was told by a friend, "I can't be around you. I can't see you. I can't be around you. It's too confronting." That my mortality is too bleak and I can't... I said, "Well, but I'm the one who's sick and you are not, and you're telling me you can't be around me." We're not friends anymore, with that person at all. But that was quite shocking because I wasn't prepared for that at all, but now I understand.

So I think MS is quite an ugly disease and it's quite, not ugly, it's quite because you can't get cured so it's forever and your life changes forever. So I think you're, like I said, the fork in the road thing happens pretty much automatically. So your friends in your life changes so dramatically that you have to choose a different pathway.

Maddy: That's so right. I live with a chronic illness as well, and I really noticed that with friendships. You learn who's in your corner and who actually is not.

Claire: Yeah, and it surprises you because you think, "Oh, I didn't know that."

Maddy: Exactly.

Claire: Right. Yeah. But it's quite telling of who's your real friends.

Maddy: Yeah, absolutely. So I wanted to talk a little bit about the film. I know that despite efforts to increase stories by and about disabled people in film and television, recent reports have revealed that the representation of disabled people on screen has changed very little since 2015. But your film actively challenges that, and challenges that lack of inclusion. Why do you think stories about disabled people are important to tell?

Claire: I think it's because it's very hard, a lot of people can't cope with it. I think they'd rather not see, don't be around and not smell it, nothing. So I think it's actually quite important to make sure that people know that we're out there, where people like to ignore we're there. Diseases like MS is invisible, most people can't see we're sick at all. So people are, I think, quite shocked when they find we're sick, and it changes your thoughts on people because you think, oh wow, they're sick, and it changes how you think they're... A person said to me years ago, it's a boyfriend/friend of my brother, he said to me, "Oh, well, oh, can't be your friend anymore." Didn't sound too ugly, but then he said to me, "Good luck with that." I said, "Oh, thank you." So that was like you're basically saying you're worth nothing now. I was like, oh wow. That was quite hard to deal with, but it's what people say.

Larissa: I know you were quite young when you received your diagnosis, I think, were you 28, Claire?

Claire: Yeah. Yes.

Larissa: Which is my age now, actually. A lot of young females are diagnosed with MS in their late 20s. Do you have any advice for people who have recently received a confronting diagnosis, or who have become chronically ill?

Claire: Okay. I think that I can only speak about MS, but a similar thing is that I think that, like as I was saying at the start, it sorts out who your real friends are. You can't avoid that. It is what it is. But also, I think that also embrace life more because I think that maybe other people like me that before you diagnoses you don't quite know how life is so good until you're diagnosed. Then, "Oh, I can't do these things." So while you're still well, if you're still able to do things just embrace it. Do what you can and just be more present, concentrate on things that are really important to you and what you can do, not what you can't do, because things you can't do they won't change. Don't go down the road of things you can't do anymore, that will ruin your mind. Just try to think of things you can do and things you enjoy, and people you enjoy, try and do that too, I think.

Larissa: I love that. That's great advice.

Maddy: I was wondering how involved were you in the telling of your own story? I know that you were executive producer, but yeah, I'd like to learn a little bit more about that.

Claire: So in the film, a lot of things were, I guess, Hollywooded up to make things more pretty. Things that were very, very not touched on, things that should have been touched on as much I think, but we tried to make it less confronting for everyone, so it was more beautifully done, I guess. Things that are really ugly we didn't do because that doesn't do well, so we left out the really bad MS things, but we talked about a lot of good things as well. We focused on good things.

Yeah, I sat behind my husband, John, the director, the whole time. So in terms of the whole shooting of the movie I was critical in terms of what was shot and not shot, I guess. But I think I would have liked it to be more about MS, but it doesn't always go well with the stories. As we were just discussing, it's actually not always what people want to see. But a lot of it was seen, which is great. So things were, I hope, highlighted things that are difficult for MS patients were highlighted a bit, but it could have been more.

Larissa: One of the things that was highlighted really well in the film was the experience of supporting your partner through chronic illness or disability. It was really lovely that the film touched on those points. For a lot of people, they may support a partner who has a chronic illness or disability. How important is it to have the right person in your life to support you through that?

Claire: Oh, I think that having a partner, well, if you're lucky enough to have a partner who supports you you've hit the gold ticket because having a partner who will go through the whole ups and downs of a disease with you, or illness with you, is critical. And I think also if you're not, I shouldn't say this because some people don't have partners yet, but I feel blessed to have John in my life to be my rock through all the things that go wrong, and he's my support mechanism on every single item of MS, he's there all the time.

Some people, their partners leave them and they also don't necessarily achieve, which is horrible. A lot of people leave MS partners because it's too horrible, which I think is disgraceful, but that's my thought. But it shows you that person probably wasn't worth having in the first place. It's a bit mean, but true.

Larissa: Absolutely. Thank you so much for your time today, Claire. It's been amazing chatting with you and learning more about your story in Take my Hand. If people want to check out the film, where can they find it?

Claire: It's on Netflix right now, or Apple as well, and Amazon.

Larissa: Amazing. And if people want to follow more of your journey, is there anywhere they can get in touch with you, or follow you online?

Claire: On the podcast. We have a podcast called 1000 Little MS Things, on the bottom of the podcast with me on it each week.

Larissa: Amazing. We'll definitely, yeah, share that with our Spoony community. And yeah, thank you again so much for your time. It's been lovely chatting with you.

Maddy: Thank you so much, Claire.

Claire: All right, thank you.

Maddy: This podcast is brought to you by Spoony, a safe space for neurodivergent chronically ill and disabled people to make friends and find support. Spoony is the world's very first social app designed with accessibility at its core.

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