‘I’m paralysed, but I’ve written a show about my colourful life’

When I was diagnosed, I turned to Judaism for some answers,” says artist Sarah Ezekiel. “I didn’t get any.”

Observant all her life, when Ezekiel received the devastating news at the age of 34 that she had motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), she sought rabbinical support. Mother to a young daughter and pregnant with her son Eric, she saw three rabbis, none of whom gave her the support she desperately needed.

The first, she says, said nothing. Instead, he just prayed. The second, who performed her son’s circumcision, also said nothing. All she says of the third is that he was from South Africa. “You’ll have to wait for the show to hear what they said,” she adds, with a half-smile, the wry humour an apparent coping mechanism that reveals itself many times during our near two-hour interview.

“I am not interested in religion now,” she continues.

“To be honest, I thought I’d get some support, but I didn’t. I’m proud to be Jewish, but I have no interest in Judaism.”

I’m proud to be Jewish, but I have no interest in Judaism. When I needed support, there was none

It wasn’t long before Ezekiel became too disabled to cook and keep kashrut, and it’s clear that the fact religion let her down remains a deep disappointment.

“I don’t understand why it happened to me,” she says. “I was observant, and I became ill and couldn’t do it any more.”

We have met at Ezekiel’s home in Hendon before her show, Ms MaNDy’s Adventures in Wonderland, arrives at the Shaw Theatre on March 8 and at JW3 in June. Whimsical splashes of colour are everywhere you look in her living room: a Frida Kahlo vase, a silver “S” hanging from the mantelpiece, a cheerful bunch of daffodils, a beaded string of elephants, colourful cushions, vibrant paintings. Even Ezekiel herself looks bright in multicoloured stripes.

Drama queens: Sarah Ezekial (second right) with the cast (from left) Duane Nasis, Te Te Bang, Alex Herd, Pixie Polite and Cheddar Gorgeous[Missing Credit]

There is a matter of factness to the way the artist speaks, which is in part because of the technology through which she communicates. Paralysed from the neck down and reclined on a chair, in response to each question she faces the screen of her Eye Gaze device. The remarkable technology reads her eye and chin movements with projectors and cameras, enabling her to control a cursor on the screen to type and speak.

She says she owes everything to the technology. She had always been creative from childhood, going on to study art and history of art and attending art college before dropping out. Losing that creative outlet when her illness hit was devastating, but the technology has now allowed her to meticulously create countless works of visual art.

“It is everything to me,” she says today. “I can’t live without creativity. Every day I create something, thanks to technology.”

And to critical acclaim. The first work she created with Eye was a self-portrait in 2012 entitled Peaceful Warrior. It aimed to capture her despair. Since then, her work has since been exhibited all over the UK, including at the Royal Academy Schools and in Qatar.

Sarah's 2012 self-portrait Peaceful Warrior[Missing Credit]

Her MND – an incurable neurodegenerative condition the ALS Association says affects one in 50,000, and from which five people in the UK die every year – arrived out of the blue in 2000, with a weakness in her left arm and some slurring of her speech. The shattering diagnosis followed two months later.

Until then, she had lived a normal life, first as a legal secretary and then as a full-time mother who enjoyed cooking for her husband and daughter Aviva and going to the gym. At first, she dismissed the symptoms as pregnancy complications.

“I think I was in denial, reckoning everything would be fine after I gave birth,” she says. “I was very depressed for about three years after my diagnosis. I wanted to die. I was dealing with disability, which I knew nothing about. I was really worried about my children, everything was incredibly difficult. I also didn’t think I would survive for very long.” And with reason. Now approaching 60, back then she was given a few years to live by “quite a few doctors.”

She says her ex-husband was unsupportive, which made everything so much harder, and then their marriage fell apart. The ensuing divorce was “very acrimonious”.

We kill my ex-husband a few times in the show

“We kill him a few times in the show,” she quips. Where did she look for support after both religion and her marriage had failed her? “Myself,” she says. “I began to trust my instincts.”

She also found valuable care and understanding at her local Marie Curie hospice, which she started attending in April 2001 and where she met a doctor, Adrian Tookman, with whom she has remained in contact ever since. He visited her when she was in hospital last month and he will be at her show. “He was the first person to believe in me,” says Ezekiel. “He helped me to get over my depression. I don’t think I’d be here if not for him.”

The artist with her "saviour" Dr Adrian Tookman[Missing Credit]

The doctor is also the focus of her favourite scene in the show – a fantasy sequence. Billed as a groundbreaking “dragstravaganza”, the autobiographical show explores Ezekiel’s memories of motherhood, illness and creativity, along with her fantasies, imaginative musings and hopes for the future. “It is imaginative, truthful, sad, and it’s great fun, too,” she says.

Through drag, music, dance and generative AI, the show brings to life her vibrant inner world and the challenges of living with severe disability, while tackling the topics of sex, betrayal, murder, nudity, gore and joy. It was devised, directed and performed by Ezekiel and her cast of drag artists, one of whom, Chanukah Lewinsky, is unmistakeably Jewish. After the show debuted in Manchester in April, Ezekiel wanted to add some Jewish elements to honour her heritage so brought Lewinsky on board.

The score includes original compositions by the musician Alex Herd, who also has MND. “He’s a really good composer,” she says, adding that they talk about the illness they share. “It’s good to have someone who understands.”

The idea for the show, which received funding from the Arts Council, came when Ezekiel met Andrew Irving, an anthropology professor from Manchester University, in 2019. He had been looking for a picture for his book, and Ezekiel told him her story and that she’d started writing it. He and his partner Melissa – a writer – read it, and when lockdown started, Melissa helped her to complete it. “If I hadn’t met Andrew, this [show] wouldn’t be happening,” she says.

Irving introduced her to drag queen Cheddar Gorgeous (whose TV shows include Drag SOS and Drag Race UK) who then brought in other drag artists.

“It progressed from there,” she says. “I didn’t know much about drag, but the queens are really lovely and great to work with.

Sarah with Peter Ash (right), who played a character with MND in Coronation Street[Missing Credit]

In addition to her visual artworks and the show, Ezekiel has given presentations to health professionals and featured in two films. Turning traumatic experiences into positives that inspire and help others is key to this artist. “I have to,” she says, bluntly. “The alternative is to give up and die.”

Accordingly, there are more projects in the works. Her autobiography is currently seeking a publisher, and she is making a documentary with independent film-making company Native Voice Films. Crucially, sharing her story in Ms MaNDy is not just cathartic – it also highlights the experiences of those living with MND and calls for greater appreciation of the creative needs of disabled people.

Reflecting on when she felt suicidal for those terrifying first three years, and all that she has achieved since, she says that if assisted dying had been legal “I’m pretty sure I wouldn’t be here now.

I know looking at me, most people would rather be dead, but I think my life is pretty good

“And I keep thinking about what I would have missed, and that people with terminal illnesses, disabled people and anyone who thinks their life is unbearable might gain hope from the show.

“I want my story to be known. It’s a story of determination, creativity and hope. At the end of the day, I want to inspire people to never give up, however bad life seems. Who can know what will happen?” Then she adds with disarming frankness, and that wry smile, “I know looking at me, most people would rather be dead, but I think my life is pretty good.”

​

Ms MaNDy’s Adventures in Wonderland is at The Shaw Theatre on March 8 and at JW3 on June 15. Ages 14+