Optimistic high achiever refused to be defined by a lifetime of bone disease
Neroli Joy Colvin, who has died in Sydney aged 53, was diagnosed with a rare disease 18 days after birth. The bone condition affected her profoundly, but never defined her. She achieved at high levels in music, academia, journalism and journalism training. Her greatest gifts, however, were in the way she lived, which provided great insights for those who knew her.
Osteopetrosis occurs in 1 in 250,000 people, suggesting about 100 people are affected in Australia. Inadequate bone formation creates dense, brittle bones and a high risk of fractures. At 4, Colvin Neroli fractured her femur and was in and out of hospital, plaster and calipers for four years. She credits her school teacher/ homemaker mother, Lorraine Smith, and her accountant father, Barry, with being conscientious about her health, and encouraging her to be active yet careful. ‘‘I would ride horses, swim, bush walk and run around,’’ she recalled.
On one such bushwalk, a young Colvin raced to the front. ‘‘I’m the leader,’’ she cried. ‘‘Follow me!’’ When she walked through the gate to her first day of school, in calipers, she didn’t look back. At seven, mineralisation was compressing her optic nerve and threatened her sight. Cutting-edge neurosurgery saved much of the vision in her right eye (60-70 per cent) and light perception in her left eye. Her femur kept fracturing until, at 8, she was old enough to have a plate inserted.
Dozens of fractures and operations marked her life. At 21, a stress fracture in her femur gave way, leaving her stranded. ‘‘I was wearing a trendy, tight black leather skirt, which the paramedic said he’d have to cut off,’’ she told Australian Doctor. ‘‘I kicked up such a stink that they decided to give me pethidine and slide the skirt off instead.’’
She took control of her life. During school, she performed three times at the Sydney Opera House. In year 12, she won the Ravenswood School Music Festival piano championship, for the second time, with a ‘‘splendid version of Schumann’s Intermezzo’’, and the eighth-grade title playing Prelude in G Minor by Rachmaninov, the North Shore Times reported.
She completed a bachelor of arts at Sydney University, and later began a career in financial journalism. This supported her through several years in London, where she became a lifelong travelling enthusiast, never allowing walking or vision challenges to inhibit her. She lugged ‘‘a backpack nearly as big as her’’, her mother recalled: ‘‘In Switzerland, after a full Neroli-type day, I was ready to ‘retire’ . . . ‘Mum, the sun doesn’t set till 10, so let’s go to . . .’ ’’
Returning to Sydney in 1996, Colvin worked her way to senior sub-editing roles on the Australian Financial Review and Sydney Morning Herald, before becoming training editor, and then leaving Fairfax in 2008. She embarked on a masters degree in adult education and, in 2009, took on a part-time contract with SBS, the Australian public broadcasting radio, online and television network, to run its journalism cadetship.
She relinquished that work after losing her vision completely around Christmas 2017. At this time, she began taking even keener note of birds. On hearing a chirp, she would pause, listen, and identify the call. Her delight in animals was also revealed in 2008 by her utter joy at finding sea otters off the Californian coast, where she sat in awe as they frolicked nearby and lounged on the rocks at her feet.
As an engaged citizen, she followed Australian federal politics avidly, informed by voracious reading of the Sydney Morning Herald, Guardian, the ABC and Twitter. Early in 2017, she tweeted as @Colvinia: ‘‘Can someone wake me when @MalcolmTurnbull actually does something? More than rant in QTime, I mean. #7monthslater #yawn’’. Soon after followed: ‘‘Missing: One prime ministerial spine. Pls return to owner if found #18C #racism #abbott2.0’’.
Her delight in food ranged from Chicken Twisties to upmarket Japanese restaurants. She could often be found inventing a ‘‘really nice salad’’ from original combinations. Losing her sense of smell and taste in 2018, and much of her chewing ability due to teeth and partial jaw removal, hugely damaged her quality of life.
Colvin’s crowning achievement was her PhD from Western Sydney University, awarded in 2017, which focused on cultural diversity in regional schools. A thesis examiner wrote: ‘‘I was deeply moved by some of the narratives . . . with stark evidence of the ways in which ‘we’ – the majority white population – so easily and readily minimise, dismiss or reconfigure racism. The candidate’s linking of local-level racialised discourses to state-level discourses of race is very powerful.’’
She always thought about her next big life goal. As she realised her life was ending, we discussed her legacy and agreed to focus on cultural diversity through storytelling, along with advocating for the environment and rare diseases. A GoFundMe account has been set up towards the establishment of a Neroli Colvin storytelling foundation.
Neroli had more problems to count than most people and yet she never did count them. She daily recounted her blessings. Gratitude fostered joy, and joy was her lifeblood; joy in her interests and in people. She listened.
Her final writing was among her final words, in November. As she lay unable to move, she spoke a poem – A Reason To Live – which began: ‘‘To love each other, And be kind to each other, And nurture each other . . .’’
Neroli Colvin is survived by her partner, journalism lecturer Jock Cheetham, her parents Lorraine and Barry Colvin, her brother, Ian, a diversity of friends, and other family. – Jock Cheetham/Sydney Morning Herald
Her femur kept fracturing until, at 8, she was old enough to have a plate inserted. Dozens of fractures and operations marked her life.