Perched on top of a horse as she takes in the beauty of the Northern Rivers landscape in New South Wales, Claire Jensz feels strong, capable and secure. “You get on a horse and you feel the horse is your vehicle, supporting you, an extension of you … your balance issues aren’t a problem; you feel able to do things,” she says. “Spending time with my horses has made my brain calmer; I feel more myself.”
A special connection to horses has been one of the most transformative ways Claire has found comfort and strength since being diagnosed with multiple sclerosis (MS) in 1999. At the time of her diagnosis, Claire’s life looked markedly different. She was working overseas in a high-powered role as an investment banker in England, married and raising three young boys. On a work trip to the United States, Claire was striding to her next appointment when she started to feel unwell and unsteady. Like many busy people, she simply brushed it off and powered on.
“Then, one morning, I couldn’t see very well,” she recalls. Initially, doctors were unsure of what the problem was, and she was given a variety of different medications to treat her symptoms. Finally, after several months and a visit to a neurologist, followed by an MRI and a lumbar puncture, she received the diagnosis – MS.
Damage control
The most common chronic neurological condition affecting young adults, MS is often diagnosed between the ages of 20 and 40, and is three times more prevalent in women than men. It occurs when the immune system mistakenly attacks myelin, the fatty material around nerves, leading to a variety of different symptoms.
When Claire was first diagnosed, much less was known about MS. In the past 10 years especially, there has been an avalanche of new research and medication available that didn’t exist before. With the time it took to get her diagnosis and the swift progression of her disease, Claire explains: “What’s happened to my brain, to my CNS (central nervous system), the damage has been done. But the medication is keeping my symptoms at bay now, so I shouldn’t be worse ever again. The medication prevents attacks, because the attacks are what gets you; you get worse each time as the damage that’s done to your brain is irreversible.”
For Claire, this damage has manifested as issues with walking, difficulty with speech, cognitive fog and incontinence, among other issues, which typically get more marked in the afternoons and evenings. “That’s one of the reasons I want to raise awareness; I’m advocating for people to get their diagnosis faster,” she adds.
And raising awareness is something she’s certainly about to do. Claire’s story has now been brought to life in the beautiful new film Take My Hand in partnership with MS Australia. Starring acclaimed Aussie actors Radha Mitchell and Adam Demos, it was written and directed by none other than Claire’s second husband, John Raftopoulos, a first-time director who had also never written a screenplay before in his life. Nonetheless, the couple was determined that Claire’s experience with MS – and their inspiring love story – be brought to life on the screen.
An enduring love
John still vividly recalls going on a geography camp at the age of 15, “and Claire was sitting down the front of the bus. I edged my way from the back of the bus to sit with her.” Admitting he “fell madly in love” with Claire at that moment, he also says he was “terrified of making a mistake, so I didn’t try to make a move on her”.
Still, the two became great friends for several years until Claire moved to England to start her successful career, where she would marry and have three boys. The pair didn’t speak for 22 years.
Let go from her high-powered position as her disease progressed – never to work again – Claire then faced the additional tragedy of her first husband, Mark, unexpectedly passing away. Returning home to Melbourne with her three boys, she reconnected with John a few years later, himself now a divorced single dad living with his daughter.
“I went over and we had a coffee… and it was like no time had passed – the feelings were still there,” John remembers. “And this time, instead of a boy, I was a 46-year-old man, a bit bashed around by life, but more appealing, perhaps.”
Aware of Claire’s MS diagnosis even before they rekindled their connection, John, now 53, says: “None of that really mattered. Because you think about why you love someone… Claire and me, our strength is we can just sit around and talk all day about who knows what. We don’t really need anyone else and I can’t answer why.”
Sharing their story
A few months after the couple reconnected, John started to pen down their story and approached a publisher, who offered to buy it. John refused, his sixth sense telling him there was a chance to turn the story into something greater. At the same time, Claire found out she had missed out on an important MS drug trial in 2018, calling John in tears.
“I thought, ‘Well, how can we make a bit of a song and dance on this side of the world for MS people in Australia, and maybe for MS people all over the world?’” recalls John. “And so I started to teach myself how to write a screenplay.”
The road to getting the final script put together was long and arduous, taking several years. But, along the way, John came to the realisation that he was the one who needed to direct the film as well, so the essence of the story would remain their own (although some of the film has been fictionalised for dramatic effect).
Much like the writing of the screenplay, getting the film made came with “a lot of pain and stress”, says John, adding that it was “all worth it at the end of the day”. Certainly one of the highlights was securing revered Aussie actress Radha Mitchell, who’s appeared in multiple big-name Hollywood films, to take on the role of Laura, the part based on Claire.
“I knew nothing about MS before approaching this role,” admits Radha, 50. “But, through spending time with Claire, I learnt a lot about the physical and psychological issues of living with a degenerative disease. I think the film really explains the impact of one’s attitude in dealing with chronic disease. It also depicts how significant our relationships can be in building emotional resilience.”
The executive producer of the film, Claire spent a lot of time with Radha to help inform her of the role, which the actress found invaluable. “It’s very inspiring spending time with Claire,” Radha says. “She has a beautiful temperament and a very clear vision for her life. She has a kind of composure that leaves you feeling very calm in her company. I don’t see her condition defining her in any way at all.”
A better understanding
The film is dedicated to Claire’s mother, Ruth Jensz, who was diagnosed with MS in her 70s when she started struggling to walk. Sadly, she passed away in 2021. “Her symptoms got very bad, very quickly – she was in a wheelchair right away,” says Claire. While MS is not strictly a genetic disease, a family history of it can increase the risk, with the strongest link being a major gene of the immune system.
Other environmental and lifestyle factors linked to an increased risk of MS include viral infection, most notably Epstein-Barr virus; vitamin D deficiency (supported by the fact that MS is more common in people living further away from the equator); childhood and adolescent obesity; and exposure to cigarette smoke.
Along with raising awareness about MS and wanting the disease to be better understood, Claire also hopes the film will let people know that while living with MS is tough, it’s still possible to live a happy, fulfilling life. “It’s not the end of the world,” she says. “Maybe it was once, but not anymore.”
Of course, that’s not to say living with the disease is easy. Far from it. After Claire’s return from the UK, she and John were living in Melbourne, where they both grew up (unlike in the film), and John admits they often felt alienated and isolated due to Claire’s condition.
“People would say, ‘it’s fine’… but it wasn’t. People don’t really want to hang around and we get that. So, we had to go and cut out our own lives, which is why we left for the coast [in the Northern Rivers]. There’s a bit of that in the film… there’s a scene in the toilet where Laura [Claire] has a bit of a disaster and they look at each other and it’s like a light bulb moment. ‘It’s just about the two of us.’”
Riding a winner
The pair have recently bought and moved onto a farm, along with Claire’s beloved horses. Mornings will typically see them having a chat over coffee before Claire heads off to feed the chickens. Later, John will help her go for a ride. The couple are planning to have someone live on their property to help Claire continue her much-loved horse rides each day because, despite her assertions that horses make her feel strong and secure, that doesn’t make her infallible when she’s riding them.
“I have fallen many times,” she admits. “I get bounced around a bit, but I’m okay. I break bones but I get back up.” Interjects John: “Claire thinks breaking bones is no big deal! She’s broken bones, broken ribs, smashed her head open, all these things, but that’s her – she’s very tough and just gets on with it.”
And Claire says the mental health benefits, freedom and joy that horse riding brings her are well worth the risks. After her ride, Claire’s afternoons are usually spent resting and spending time with her three cats and chickens. (The couple’s adult children are all based in Melbourne.) Meanwhile, John is in the process of writing his next film, having been well and truly bitten by the filmmaking bug.
Take My Hand will be in cinemas 22 August. To learn more about multiple sclerosis, visit msaustralia.org.au.
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