A big post-polio conference being held in our country, just up the road in Sydney? You really want to go but …
The event, organised by Polio Australia, was the 2016 Australasian-Pacific Post-Polio Conference with guest speakers, polio experts, coming from around the world.
Chatting on Facebook, an American polio friend asked if I was going explaining she couldn’t manage the trip physically. I described my financial and physical limitations and she offered to fund me to attend, knowing I would share any worthwhile information widely.
How could I resist?
Three days in Sydney, rooming with a young Vietnamese-born polio survivor, was an eye opener. I took copious notes, photographs, blogged, wrote special editions of newsletters from the talks to justify my friend’s support. But the range of basic and new information needed to be ‘out there’ for everyone.
The idea of ‘Life Skills for Polios’ as a ‘light-hearted handbook’ was born. Using the conference notes as a backbone, I wrote, undertook further searches, did doodly illustrations on my iPad, then realised we needed funding for printing. Our group (Mornington Peninsula Post-Polio Support Group) had a reasonable bank balance but we were unsure if state government funding for disability self-help groups would continue (it recently has). Members were reluctant to run us dry.
So, I updated my slide show and embarked on a series of talks to Rotary and Lions clubs. Many such talks over the years had not resulted in a single donation. This time, we had the right project and $4500 came in from the three clubs – Dromana Rotary, Rosebud Rotary, Rye Lions, also the Mornington Peninsula Shire Disability Access officer, other polio support groups and individuals.
Our local printer did a good job on our cook book for Polio Day 2012, so we went back to him with the same spiral bound format, easy to hold for those in chairs.
Content covered the main issues we face – fatigue, appropriate exercise, bracing, heat/cold intolerance, falls, and psychological trauma. To ensure accuracy, the manuscript was run past USA polio guru Dr Richard Bruno; Victorian polio specialist Dr Stephen De Graaff and USA psychologist Dr Stephanie Machell, who both spoke in Sydney.
We printed 300 copies rather than a safe 250 given the generous funding. Dr Bruno offered his Random Harvest e-library for download sales, saving the exorbitant cost of postage across the world.
‘Life Skills for Polios’ was launched at Polio Day 2017 in rural Victoria, with all proceeds to Polio Network Victoria. Any e-sales were to be split between PNV and the International Centre for Polio Education.
From that idea in November 2016, to reprint early 2018, the Life Skills for Polios journey has revealed a deep world-wide need for information about post-polio and late effects of polio. We have made many new friends who felt isolated and helpless.
Polio Australia, Spinal Life Australia (based in Queensland) and Polio Tasmania and NSW gave the book publicity in their newsletters. Orders poured in. Spinal Life wanted 50-60 to give to new clients – we didn’t have that many left.
In November 2017, Dr Bruno emailed that the book was ‘selling like hotcakes’. Nice. Then in December, Bob Storrs Random Harvest e-library editor declared ‘Life Skills’ its biggest seller for 2017.
Next day in the pool, where thinking can be done undisturbed, I thought – better capitalise on that, so put out a ‘best seller’ news story bringing in more orders. Two came from within two blocks and two kms of us – from local people who knew nothing about our local post-polio support group!
The book was doing the task previously eluding our group – finding polio survivors needing help but who hadn’t come forward.
Dealing with orders has been a challenge, particularly overseas and NZ where cost of direct bank deposits is high. Have received US dollars and Aus dollars in old Christmas cards to get around it. Our treasurer Bruce Worme (aged 83) has been fantastic and creative, swapping US dollars to vacationing friends.
With every email order I added addresses to our support group newsletter list. That 8-10 page monthly newsletter now goes to seven countries as well as right around Australia.
The book has gone to Afghanistan, Indonesia, Nepal, South and Western Australia, Queensland, Tasmania, New Zealand, Wales, UK, Taiwan and untold US States. Have held fascinating email conversations with: a self-confessed old white chap who writes books to help young black kids learn to read; an artist in Oregon; one request on email came from most unAustralian name, asked where she was: Tennessee. She was staggered I was in Australia, had never ‘met’ an Aussie before. Another name was suspicious – yep, Canada. A chap in Maine asked for information for help with his hands. He was an artist, sculptor and printmaker like me, but unable to practise any more. (I had a thing about hands reckoning I could cope if legs went but hands – then was diagnosed with RSI, in a lot of pain – found a horse linament – cured).
So the little book has diverted the writer for a year, performed many unexpected good deeds, brought in funds for our network, found new younger members for our group.
At the moment – breaking news – the book is being translated into Mandarin in Taiwan requiring new illustrations of an Eastern flavour.
While delighted by its success (you little bewdy – Aussie slang) the author really wants to continue the dream of being a novelist again.
Fran Henke is a retired journalist, photographer, artist and writer. She had polio in 1946 aged 3, discovering post-polio in the late 1980s. Fran figured her communication skills should be used to benefit others, continuing writing and lobbying for better understanding of polio around the world. She is working on her 21st book, the third in a trilogy set in colonial Australia.