Extract from the book ‘From Point AA to Point B’ The Driving Story of John Olsen – written by Rhys Thurston.

For the first forty four years of Vida’s life she enjoyed the pleasures of marriage, motherhood, a nursing career, golf, painting and seeing to her garden. Sadly, during that time she also had to attend to and witness her brother pass away from leukodystrophy. It was a fairly unknown genetic disease that was passed on by her mother. In the early 1990’s Vida started to recognise a few symptoms of her own.

She began to suffer from morning leg spasms. As she would wake up and prepare to get out of bed, her legs would quite regularly go into spasms. The spasms would not last for long and the rest of her day remained unaffected. However, as time went by her leg spasms continued, all the while increasing in ferocity and length of time. They seemed to be at their peak after a previously demanding day at work. There was also another sign that her legs were being attacked. While Vida was recurringly experiencing the spasms, she began noticing that the movement of her legs was becoming subtly slower than normal and she could not function as instinctively as she once did. She could no longer ignore the issue.

After having had an acute personal experience with leukodystrophy, she was aware that she was displaying similar symptoms to her brother. Vida subsequently made an appointment to see a doctor. On that very first visit she was diagnosed as having Adrenoleukodystrophy (ALD). The disease was that unfamiliar and unpublicised that a number of people at the Geelong Hospital had to return to their study books to gain a further understanding of the disorder.

There was no direct treatment to cure or aid the process of leukodystrophy. Throughout her time Vida did try a series of tablets to reduce her leg spasms, and a year after her diagnosis she trialled Lorenzo’s Oil. It was made popular through the movie of the same name that starred Nick Nolte and Susan Sarandon. Unfortunately for Vida the main effect that Lorenzo’s Oil had on her was a negative one. It predominately made her nauseous and she was constantly sick. After two months of putting up with the persistent queasiness, she decided it was not working and simply not worth it; she ceased using Lorenzo’s Oil.

As time went by the ALD continued to affect her everyday living. Vida had a long standing association with the freedom and enjoyment of local golf courses. Throughout the years she had even registered a championship to her name. Yet, in the mid 1990’s while playing a round at the East Geelong Golf Club, her legs began to twitch. Her legs would often feel a bit of distress and jerkiness, especially during the winter months. However most of the time she dealt with it in the privacy of her home. While playing the third hole her legs would not stop spasming and she told her playing partner that she needed to leave. That was the last time Vida ever picked up a golf club.

Golf was not the only casualty in her life. In the year 2000, Vida had to retire from the Geelong Hospital. After more than a quarter of a century working at the hospital, she had diligently worked her way up to be the charge nurse in the emergency department. While her mind was still wanting and willing, the stresses on her body eventually caught up with her and she had to leave her position. Vida never worked again.

There were numerous planned and involuntary practises that gradually became more difficult to do. Vida acquired a walking stick to assist her when leaving the house. She also had to allow for some added time to complete her errands and grocery shopping and would try to avoid stairs. Vida could no longer run or jog. She stopped seeing to her garden. Collecting the mail from the letterbox became more than a fifteen second task. The household chores would take much longer to finish than they used to, and when cooking dinner she would often sink. At the commencement of the cooking procedure she was standing tall. By the time Vida had completed cooking dinner, her knees were normally pressed against the kitchen cupboard, her elbows were pushing hard on top of the supporting bench and her nose was nearly part of the evening dish. Apart from sitting on the couch while watching television or lying in bed at night, the ALD was gradually and convincingly taking away her life. During her struggles to move, walk and stand, Vida was confronted with a number of other morbid and unrelated health concerns as well.

Bedsides the difficulties, the frustrations and the physical pain of dealing with ALD, she had to further endure two doses of cancer, a troubling captive nerve and an unfortunate fall that resulted in a fractured hip. Her odds of survival were sometimes threatened during those complications, and in particular her battle with lung cancer and breast cancer. Throughout it all she remained vigilant and determined and her will to live won out.
Good days and bad days were intertwined when experiencing the depths of ALD, cancer and the restriction of a broken hip. Even though Vida had every right to ask for a bit of help, she found the actual process quite difficult to do. Vida continued to live by herself, and her self-sufficiency took care of all of her everyday challenges. The only charity was when a friend would come over and prune the roses or mow the lawns. Between all of the diseases, the strongly built independence and the acceptance of her life, she met John.

Her world had been that fixed and predictable that letting a man in seemed unfair on him. Vida did not want someone else to have to deal with what she was going through, and she knew that over time, things would only get worse. That was why it took two separations, many cups of tea and a number of talks before she could finally embrace John into her life.

After taking some time to share her journey and illness with John, and in turn release some of her governed independence and total control of the household duties, she then had to return to her self-reliance for seven and a half months while he was away. Just like before, Vida managed to withstand life’s demands through her mental will and a developed lifestyle; but boy was she pleased to have him home.

After 7,041 kilometres, 234 lonely nights, 165 days without a single shave, numerous phone conversations between one another, ninety kilograms of Wilson, thirty-four weeks apart, nine sets of tyres, five Australian states, three groupies, two deserts, one missed birthday each and no sunscreen, John and Vida were back together. They could talk, share, visit, support each other, go on outings and simply be with each other. Nevertheless, there was one last job that John needed to complete before he was categorically finished, and that was the $200,000 target.

The donations started before, and continued throughout and after his long walk. John had secured money from companies, Lions Club functions, guest talks, supporters and total strangers. As it ended in mid 2010 the final figure was a stirring $124,000. He remained a touch disappointed at not achieving his desired aim, but it was still a six figure charitable contribution and how many people could claim they had done that?

All proceeds from the sale of ‘From Point AA to Point B’ will go to the Australian Leukodystrophy Support Group. Please contact the ALDS office or Mr Brian Edward – bseapm@bigpond.net.au if you would like to order a copy of John’s book which has been written so beautifully by Rhys Thurston.