Published: 30 March 2021
Last updated: 4 March 2024
BIANCA* WAS SURPRISED when her husband Ian said he wanted to buy her jewellery. Both doctors, they knew Ian had been given a death sentence when he was diagnosed with motor neurone disease (MND) in December 2016.
There is no cure for MND. The average life expectancy after diagnosis is two, maybe three, years.
Bianca also knew Ian, now 43, had finalised his affairs, particularly “the nest egg he wants to leave for our son, Caleb*, who turns eight this year”. So, Bianca’s shock last December wasn’t Ian’s inevitable departure, but the fact that he wanted to buy her memorial jewellery.
Like most husbands, Ian doesn’t often utter those words. The last piece of jewellery he bought her? “When we got married,” she stumbles. “No, when Caleb was two they went together to buy a beautiful little necklace for my birthday.”
Ian’s plan was to return to that jeweller but Bianca told him she’d just read a story - on this website - about Jewish Australian jeweller Zohar Edelshtein. ‘Her story resonated with me and I love her style of jewellery,” Bianca says. So, she showed the story to Ian, who agreed she should talk to Zohar about creating a bespoke piece.
Ian couldn’t make the inquiry because MND had long robbed him of the ability to make phone calls.
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Bianca and Edelshtein worked together on the creative process via phone and Zoom. “In our first zoom meeting, Bianca said she wanted a bracelet made of pure gold, with an engraving personal to both of them and a locket of Ian’s hair,” Edelshtein says..
“It was a huge brief. I emailed my design ideas to Bianca and we continued to discuss the details until she was happy.
“From then on, Ian and Bianca gave me artistic freedom. Working with them on the bracelet lifted my spirits rather than the other way round.”
The result, Bianca says, is “a bracelet that contains things that are intensely personal to Ian and me.”
The late theoretical physicist Stephen Hawking is the most famous victim of MND, having been diagnosed in his early twenties as an Oxford University postgraduate. Hawking’s distinctive, electronically relayed voice became part of the historical soundtrack of the past half century.
Ian has more advanced technology. “As soon as he was diagnosed, Ian spent hours recording his voice,” Bianca says. “So he ‘types’ - using assistive technology, not with his fingers - onto his device, then the computer talks using Ian’s own recorded voice.”
Working with Ian and Bianca on the bracelet lifted my spirits, rather than the other way round - designer Zohar Edelshtein
Despite their medical training - when each learned about MND - neither Ian nor Bianca recognised the tell-tale signs. Just before his 39th birthday, Ian went to see his GP after Bianca teased him once too often that he was “choking on his Ribena” over dinner, due to a build-up of saliva.
“My life changed instantly,” Ian says. “It was ten days before my birthday. I was fit and healthy with my whole life before me.”
Ian’s GP recognised his symptoms immediately, spotting his voice had changed, and referring him to a neurologist with MND expertise.
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“I’m in deep shit!” Ian remembers saying to himself as the neurologist told him the diagnosis over the phone, confirming a few days later when the couple saw him for a formal examination. Both he and Bianca knew he would lose his ability to move, talk, eat, swallow - and eventually breathe.
Motor neurone disease is one of the cruellest ways to die. While the victim’s brain and senses remain as alert as ever, week by week they lose the use of their limbs, voice, throat and lungs.
“Ian is only alive now because we fought for him to have an emergency tracheotomy in August 2019 when he had developed pneumonia,” Bianca says. “He’s now dependent on a ventilator.
“And we have 24/7 specialist nursing care at home.”
The bracelet has an engraving personal to both of them and a locket of Ian’s hair
According to MND Australia, Ian is one of about 2000 sufferers of the disease in this country. Sixty per cent are male and 58 per cent are under 65. Each day two Australians die of MND - and two more are diagnosed.
Ian gave up his psychiatry practice immediately, concerned that “my patients and nurses in the practice would find my decline too confronting - and it would be difficult for me to care for others confronted by such a diagnosis”.
They had met in 2006, subsequently crossing paths professionally, attending the same conferences and serving on medical committees. But they didn’t begin dating until both of their first marriages had broken down. They married in 2012 and Caleb was born in 2013.
By then they were living on Victoria’s beautiful Mornington Peninsula. The future looked bright. “Bianca’s main concern was whether our house would have enough room for both her book collection and mine!” Ian quips.
Since his diagnosis, one of Ian’s greatest pleasures has been “walking Caleb home from school, something we both enjoy very much” - metaphorically speaking, of course, since Ian travels in a power wheelchair provided by MND Victoria.
In 2019, Ian became the public face of an MND Victoria campaign. “It was great to discover there is a one-stop shop where we could access information and refer family and friends for high quality information and support,” he says. “The equipment service - like the power wheelchair - has also made an immense difference to our lives.”
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Each state has an equivalent organisation, concentrating on providing support and equipment while the national organisation specialises on research. And while Ian’s original low-tech communication devices were provided by MND Victoria, his specialised needs are now mainly funded by the National Disability Insurance Scheme.
“Last year was a particularly tricky year for all of us,” Bianca admits.
Despite their arcadian surroundings, the family spent most of 2020 in and out of Covid-19 lockdowns. There were none of their regular live theatre outings into Melbourne. (“A shout out to Arts Centre Melbourne,” adds Ian. “Its wheelchair access is what every Australian arts venue should aspire to.”)
In 2019, Ian became the public face of an MND Victoria campaign. "It was great to discover there is a one-stop shop where we could access information and refer family and friends for high quality information and support"
How did being Jewish affect the couple’s confrontation with MSD? “We are Reform/Progressive,” Ian says. “I'm not sure about a physical afterlife but it's important to be part of a spiritual tradition that extends generations into the past and future.”
Bianca has a different answer: “Especially early on, whenever anyone asked how we could cope with Ian’s diagnosis, I thought of my grandparents who emerged from the Holocaust and endured far worse.”
See mnd Australia: mndaust.asn.au. Zohar Edelshtein Jewellery: zoharedelshtein.com * Bianca and Caleb wish to remain anonymous.
Main image: Left, Ian and son Caleb; right the bracelet by Zohar Edelshtein on Bianca's arm (supplied)
