‘When I told my boyfriend I had Parkinson’s, he got up, kissed me on the head and walked out for ever’: Actress Lysette Anthony opens up about the shock of her diagnosis, the emotional fallout – and her determination to stay positive
- Actress Lysette Anthony was diagnosed with Parkinson’s disease six years ago
- The 58-year-old has now decided to reveal her condition, which she calls ‘Parky’
- Her then partner left her after a year of dating when she shared the bad news
Several years ago, a close friend of the actress Lysette Anthony telephoned her to share the devastating news that she had cancer.
‘I found myself in the awful position of actually feeling jealous of the hell and horror of going through chemotherapy,’ she recalls. ‘Because terrible as it is, it meant there was hope. And it’s the lack of hope that’s so hard.’
At the time that phone call arrived, Lysette, then 52, was facing her own shattering news, having just been told she had the progressive nervous system disorder Parkinson’s disease.
Lysette Anthony (pictured), 58, was diagnosed with Parkinson’s disease when she was 52, but has only recently just decided to share the news publicly
Lysette (pictured with John Travolta in 1993)
While drugs can help sufferers manage their symptoms, there is no cure and over time those symptoms, which include tremors and muscle rigidity, worsen.
In the very same week, Lysette had been told she had a new leading role in the Channel 4 soap opera Hollyoaks. Fearful of the impact the diagnosis might have on her career, she kept it secret.
‘I honestly thought I would lose my job,’ she says. ‘I was — am — a single mum, and everything comes down to me.’
It is only now, after recently leaving Hollyoaks — where for years she managed to keep her condition confidential, except from a few cast members — that Lysette, 58, has decided to speak out. And in this, her first newspaper interview, she insists that despite living in almost constant pain, she refuses to be defined by the condition she has decided to call ‘Parky’.
‘There have been some really bleak moments. You can’t help but think about all the things that might happen, although I try not to,’ she says.
Lysette Anthony played as Marnie Nightingale in Hollyoaks for several years, while keeping her diagnosis a secret from most of the team for years
‘Every day has its challenges: every now and again my limbs stop working, and I’ve had to learn to pace my life differently. But I’m not digging the foundations of my mausoleum and we’re not writing my obituary yet. It has been a long process of acceptance, of learning to understand what I am dealing with, and now it’s me and Parky on this road together.’
Those words typify the pragmatism and defiance Lysette displays during our interview. While there is no shortage of tears, there is plenty of laughter too.
‘I’m not quite ready for a wheelchair yet, am I?’ she says with a grin, standing up and twirling with all the poise of a ballerina.
She certainly still looks fantastic, with the same gamine features and mesmerising blue eyes that, when she was 17, led the renowned photographer David Bailey to hail her as ‘the face of the Eighties’.
Lysette Anthony was dubbed ‘the face of the Eighties’ (pictured in the 1983 film krull)
Yet the day-to-day impact of her condition is clear: while Lysette shows no visible symptoms during our meeting — her hands are steady, her movements graceful — she had to delay our get-together after ‘seizing up’ that morning.
‘Sometimes I’m overambitious and today was a case in point,’ she says. ‘I overestimated what I could do, then got in a bit of a state, and my body just goes. It’s basically knowing there are limits, which I’ve always been bad with. But old Parky is forcing me to confront them.’
It is a cruel blow for anyone, and for Lysette an emotional new chapter in a life that has navigated all manner of heartache.
A household name by the age of 20 after first being discovered as a model at 16, Lysette found fame in the sitcom Three Up, Two Down before moving to Hollywood, where she was cast by Woody Allen in his 1992 film Husbands And Wives.
She has continued to work steadily ever since, although she chose to focus her energies on motherhood after the birth of her only son Jimi, now 17, in 2004.
Twice divorced after two short-lived marriages, to Dutch artist Luc Leestemaker and American film director David Price, her relationship with Jimi’s father, Bafta-nominated composer Simon Boswell, ended in acrimony. ‘Simon and I made a horrible mess of our relationship. Yet we also made Jimi — proof that miracles do happen,’ she says.
Lysette has revealed she has thought about euthanasia and assisted dying, and said she doesn’t want to end up ‘dribbling in a chair’
In 2017, Anthony bravely went public with allegations that Harvey Weinstein, the former Hollywood mogul who is currently serving a 23-year prison sentence in New York for sex offences, raped her in the Eighties.
In May, Weinstein could face further sexual assault charges in California, in a trial in Los Angeles at which Lysette may be called to give evidence.
The prospect is a painful one for her. ‘I feel I have paid a heavy price for speaking out,’ she says. ‘There is a part of me that wishes I had kept my silence.’
There is also the question of her energy levels, which can vary enormously. ‘Some days I am fizzing, other days it’s like there is a glitch and I really struggle,’ she says, her eyes filling with tears. ‘There are times when, lying in bed at night, even my duvet feels too heavy for my limbs.’
Now she wonders how early her symptoms began to manifest themselves. ‘I’ve always got incredibly tired,’ she reflects. ‘At times my energy would just go.’
When she was a teenager, her left eye would occasionally droop when she was tired. ‘My cousin used to point out that I sometimes dragged my foot, too,’ she adds. ‘Of course, back then I didn’t think anything of it.’
Lysette had her first big break on Three Up, Two Down – a British sitcom that ran from 1985 to 1989
She also struggled with nerves on stage, her hands shaking violently at the start of a performance. ‘Were these early signs? I honestly have no idea,’ she says.
At any rate, no one mentioned anything until 2013, when Lysette was in a touring production of Agatha Christie’s Go Back For Murder alongside Sophie Ward and Liza Goddard.
‘I had to smoke in my scene, and I would shake like mad as I was lighting my cigarette — which I again put down to nerves, but Sophie said that at times it was like my hands didn’t belong to me,’ she recalls. ‘Liza thought it was all about the menopause, as I was boiling all the time — although because it was such a scorching summer, it was hard to know if they were hot flushes or not.’
Either way, Lysette thought little more of it until early the following year, when she heard the comedian Billy Connolly talking about his Parkinson’s diagnosis in an interview. ‘I remember thinking, “that’s what I’ve got”.’
Acting on it was another matter, though. ‘I suppose there was an element of ‘if it’s not official then it isn’t true’,’ she says quietly. ‘A diagnosis would mean I’d have to confront the awful reality of it, and I couldn’t face that.’
She says this is a coping mechanism she has clung to ever since. ‘Odd as it may sound, I believe in operating on as little knowledge as possible,’ she says. ‘So I don’t google, I don’t research. A degree of denial works well for me.’
In fact, it would be another year before she was given a diagnosis, because when Lysette did finally pluck up the courage to see a doctor after her symptoms worsened, she was told her shaking hands were probably caused by a trapped nerve.
Finally in 2015, after months of to-ing and fro-ing, she was referred to University College Hospital in London, where a brain scan confirmed that she did indeed have Parkinson’s.
‘I didn’t feel anything in that moment,’ she says softly, ‘because deep down I already knew.’ She wells up, though, as she recalls telephoning Simon, Jimi’s father, and having to break the news to Jimi. Now a budding musician, he was then only 11.
Lysette is fiercely proud of him, her face lighting up whenever his name is mentioned, and he was her first thought after the diagnosis was finally made.
‘Funnily enough, I can’t remember telling him — maybe I have blocked it out,’ she says, ‘but he has been amazing. He takes everything in his stride.’
Upbeat as she sounds today, for a time Lysette was plunged into the abyss, her fear and vulnerability underlined by her then boyfriend’s decision to walk away when she revealed her diagnosis.
‘I’d been quietly seeing someone for about a year and we were at the point where we’d discussed meeting each other’s children,’ she says. ‘Then, when I told him, he stood up, kissed me on the head and walked out. Later he sent me a text in which he said he obviously didn’t love me enough.’
She shakes her head in disbelief. ‘It’s hard to believe people can be so cruel,’ she adds. ‘So I did go through a period of being incredibly depressed.’
She says one way of coping was giving herself ‘permission’ to take control of her illness in whatever way she wanted to.
‘I’d be lying if I didn’t admit I’ve thought through all the scenarios — euthanasia, assisted dying,’ she says. ‘I fiercely believe it is our own personal decision to make. But I could never burden Jimi with that one. I do know I don’t want people to feel sorry for me — and I don’t want to sit dribbling in a chair.’
In those early weeks after the diagnosis, there was also the issue of the new contract with Hollyoaks. She relocated from London to Liverpool, where the soap is filmed, to eliminate a tiring weekly commute, but her role as the scheming Marnie Nightingale often meant punishing 12-hour days on set.
‘It could be incredibly tough,’ she recalls. ‘I’d be worrying about walking down a small flight of stairs on camera, and when you get scared your body doesn’t behave. There were times when I’d come home physically and emotionally exhausted — but I still had to be a mum and run a house.’
She confided early on in co-star Greg Finnegan, who played her on-screen son James. ‘On occasion, he was pretty much dragging me around the set. We did have a giggle,’ she says.
When she finally told the rest of the team two years ago, many were also very supportive. ‘A lot of them cried,’ she says.
Lysette filmed her final scenes in November after her contract ended but, having at last gained the opportunity to take an extended rest, she suffered a particularly harrowing episode of ill-health shortly before Christmas.
‘I had this rush of sound inside my ears, then I just fell on the floor,’ she says. ‘I couldn’t get up. I had to crawl to reach the loo. It was incredibly frightening.’
It took several days for her to return to full strength, but what she went through proved to be a turning point.
‘I gave myself a good talking-to,’ she says. ‘That’s when I decided to call what I have ‘Parky’. And I know it seems ridiculous, but it has been a big thing to say to myself: ‘Right, it’s you and me now.’ And although there are still days when things go wrong, I feel I have more control now.’
She is certainly strict about looking after herself, eating well, making regular visits to a chiropractor and taking ice baths to help her muscles. She is also buoyed by recent advances in brain research.
‘There are all sorts of extraordinary things happening out there — so from having no hope at the beginning, I have a lot of hope now,’ she says.
She has been inspired, too, by the courage of other well-known Parkinson’s sufferers, particularly Billy Connolly, Ozzy Osbourne and Michael J. Fox, who played a character with the condition on the American series The Good Wife, allowing him to bring its idiosyncrasies to life on screen.
‘I have so much respect for that — to put yourself out there in public,’ she says. ‘Actually, I would love the chance to do that, too, some day. For someone like me to embrace my disability in that way would be profound.’
It is one of Lysette’s many ideas for the future. She is currently working on her own script; she has a film role in the pipeline and is also writing her autobiography.
‘Yes, my time is finite but there are many things I really look forward to achieving — and possibly failing at, but definitely trying,’ she says. ‘I have become accustomed to people writing me off, but underestimate me at your peril.’
As for romance, it’s a question of never say never.
‘I would like the chance to fall in love again and I think I have a lot to share,’ she says. ‘But I’ve got a lot of love in my life already. And while for a long time I was frightened of being on my own, I’m not that woman any more.’
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