Former jounalist Deb Bailey, who died in 2001.
Source: The Daily Telegraph
She was slim and fit. She ate wholesome foods, drank sparingly, exercised regularly and did not smoke. She looked like someone who might live to be 100.
This, however, was about to change – rapidly and drastically.
The first inkling that something was wrong came on October 25, 2000: her 20th wedding anniversary.
Her husband, David, arranged dinner at a Sydney harbourside restaurant so the Deb and he could celebrate in style with their daughters, Claire and Jane. Deb had one drink that evening – a margarita – and her speech became slurred.
She sounded drunk but was completely sober.
Her speech got worse over coming weeks and she started to lose that air of robust good health.
When she began visiting doctors in December her illness was both obvious and a mystery. They could tell what was wrong simply by looking at her and hearing her speak; but her disease defied tests to confirm the diagnosis.
Deb Bailey (she insisted on Deb, never Deborah) was born in Sydney to Jim* and Babs on March 30, 1953. She was the eldest of three children: Jonathan and Melissa rounded out the family.
Deb spent most of her teenage years in Canberra, where Jim, a former navy pilot and ship’s captain, was a senior defence official.
She went to Canberra Girls’ Grammar School and later to Wenona in Sydney.
Deb decided to pursue a career in journalism and got a cadetship on the Canberra Times, where she reported and edited for five years before moving to Sydney.
She worked as a sub-editor on the Sydney Morning Herald and in the late 197os was hired as part of the start-up team for a magazine called You and Yours, launched under the guidance of the legendary Ita Buttrose.
Deb was energetic, hard working and professional; Ita transferred her to the flagship magazine, the Australian Women’s Weekly and in 1980 promoted her to chief sub-editor.
In that year, Deb married David Armstrong, a writer on the now-defunct Bulletin magazine.
The 1980s saw Deb promoted to assistant editor of the Weekly while giving birth to and looking after her daughters. Claire was born in 1984 and Jane in 1985.
Deb was a keen homemaker. She was an excellent cook who often used her lunch hour to buy fresh food to prepare for the evening meal and who loved hosting dinner parties.
She could knit and sew and liked to spend time in the garden. She was especially proud of her rose garden the size of a cricket pitch behind the family home.
In 1993 Deb was involved in another start-up, this time as managing editor – the launch of SHE Australia. By the time she fell ill, she was deputy editor of Family Circle magazine.
As the year 2001 dawned, Deb was becoming weaker and thinner. She had more tests in January but they were inconclusive.
Towards the end of the month, however, Deb collapsed at work; David picked her up and took her home. She went back to work but collapsed again: her legs were refusing to function properly. David took her home again. She never returned to work.
In February Deb was admitted to hospital for a series of tests, a process of elimination that finally left only one illness: motor neurone disease (MND), also called amyotrophic lateral sclerosis (ALS).
Deb’s form of the disease was one known as progressive bulbar atrophy, which attacks initially through the throat and neck. She would lose her ability to speak, eat and drink. When the diagnosis was confirmed, her biggest worry was that she could no longer kiss her girls.
Soon she lost her ability to walk. She moved downstairs to a bedroom set up in the lounge room and spent her days sitting at a big kitchen table, watching TV or communicating with family and friends by writing, in her clear and distinctive hand, in thick notebooks bought by the dozen.
Visitors came by appointment so that Deb could chat to them one-on-one, writing in her notebooks.
As her body shut down, however, Deb’s mind remained alert and active (one of the great cruelties of the disease). She said she did not want to continue living if she lost the ability to communicate with loved ones.
Friends lent Deb a wheelchair but soon she her arms became too weak for her to propel herself around the house. The MND Association of NSW (which does wonderful work in helping care for MND victims) supplied an electric wheelchair and, later, an electrically operated adjustable bed.
Putting Deb to bed each night took about 45 minutes. It was a two-person job, with Claire and Jane taking turns to help David lift Deb into bed and place an array of pillows to support her back, neck and head, to make sure she felt comfortable.
By March Deb could not eat or drink properly so she was admitted to hospital to have a feeding tube inserted into her stomach. From then on, meals were liquid formula.
She was also fed Chinese herbal medicine to help with her breathing. It was effective until the very end.
Deb had good days but overall it was a case of continued deterioration. This beautiful woman became thinner and thinner, more and more gaunt.
Her hands became less and less co-operative, tighter and more gnarled. Her notes became hard to follow.
In mid-July Deb suffered an otherwise minor illness that everyone close to her was dreading. She caught a cold – a little sniffle that soon went to her chest. She did not have the muscle strength to clear her lungs and as is so often the case with MND victims she developed pneumonia.
One morning, she was too weak to hold a pen: her ability to communicate was gone.
Breathing was stressful and she was given morphine, spending the day in and out of consciousness.
Shortly after 8pm that evening, surrounded by family and friends, she died. It was July 23, 2001 – a mere nine months from the first symptom and five months from the official diagnosis.
Deb’s funeral service was held at Our Lady of Dolours Roman Catholic Church at Chatswood, Sydney. Deb wasn’t a Catholic but the parish priest at the time, Father Robert Borg, had become a friend.
It was the nearest church big enough to seat hundreds of people who came to say goodbye.
His was the only nearby church big enough to hold the expected congregation: more than 600 people came to the service to say goodbye to a much-loved woman.
* Jim Bailey shared a birthday with his daughter – March 30. Sadly, they also shared an illness: Jim had MND but his was a type that progressed slowly and he died with the disease rather than from it, suffering a heart attack at his home in 2002.
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The Deb Bailey Foundation for Motor Neurone Disease is a not-for-profit organistation and depends on the generosity of individuals, corporations and community groups to help us achieve our mission of finding a cure for MND. Whether your interested in fundraising, sponsorship, joining the research team, or if you’re just keen to get involved, there are many ways you can help.
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