Take home messages

Sculpture at Museum of Contemporary Art Australia by Sangeeta Sandresegar 'To be carried away by the current, to be dissolved in the Other' (detail - in full below)

SO it is over. Is 30,000 feet flying home above our world enough for a perspective on the past week?

I was sponsored to attend this conference by the generosity of an American Facebook friend who couldn't manage the flights. Recalling 24 hour flights to Warm Springs in 2009 for that international polio conference, her reluctance was completely understandable. It's not just time in the air, but time to airport, transport by chair to distant departure gates, while being first on, last off to wait for the staff to materialise with narrow uncomfortable wheels. This can become watching time, watching people, watching clouds.

Coming home being school holidays, I comment to the young Jetstar officer how embarrassed I am at needing this help when they are so busy. At least the legions of children can mostly propel themselves. Kids often escape, he commented and we spy a cute Chinese tot with little plaits being chatted up by a squatting flight attendant. See what I mean, he joked. Airports need electric vehicles as there are in China delivering passengers along the kilometres of walk ways, I opine.

Now in the air, window seat, what stood out from three days of conferring about post polio? Without referring to notes, Steve de Graaf's comment about conviviality persists. While polio’s legacy is not ‘one size fits all’ – we have been in the same journey of isolation, bullying, painful treatments, being different. So we understand each other, like family. Many of the expert presenters were polio survivors so we were able to take their words more seriously. Often we look at skinny young presenters talking about exercise for example, and think what would you know about the law of diminishing returns! My responsibility to myself and family is to remain as mobile as long as possible, so I exercise twice a week: swimming and seated gym.

One of the important messages was not to delay using aids however. Especially around airports I am grateful for a wheelchair and often would welcome one to magically appear.

Given the chronic lack of funding for Polio Australia, the pressures on government to fund the hungry octopus that is the NDIS, we must take responsibility for ourselves. The main idea to coming our polio dreaming sessions was the need for a Centre of Excellence, like Denmark's. “We should all move to Denmark”, someone joked. Well, hello! Victoria has the kernel of a CofE. Polio Services Victoria could expand to specialise not only in polio but other neurological cohorts and attract stronger government support. We may need to band together with fibromyalgia, MS, Parkinsons, to achieve accessible informed medical help, much as we think we are unique.

Look, we are fairly unique. Survivors of a virus that attacked in childhood to create devastating late effects. Who could blame us for banding together for help?

Fatigue from this wonderful journey has been intense. Wrote a pome about a Scarecrow to try and explain to others how it felt (below).

Looking back a few days down the track, there was a bombardment of information, much of it we had heard before, but most outstanding was “us” the people attending for ourselves and on behalf of others.

I met several friends only known on Facebook – Tina and Eddie Demetri, Joan Headley of PHI met briefly at Warm Springs, my room mate Yen Tran. Now there’s a special story.

Yen and I were put together by conference organisers, who knew how that might work out, but it was magical.

Yen had been a boat person from Vietnam, no English, but polio. Went on to be a pharmacist with the belief she owed Australia to do her best. We talked long into the night in our room overlooking the Sydney Opera House, thrilling especially for her. I had spent many long nights inside it as a theatre, dance critic. One night we came back to the room and the moon was peeping out from clouds above it.

Night one we walked Circular Quay in search of affordable food. There was a Vietnamese café, but sadly closed, would have been great to go there with her. I couldn’t walk any further.

One important point from the sessions was a relief to hear: it takes twice as much energy to walk using aids and equipment. We knew that didn’t we?

Yen has not looked into aids and equipment for herself, yet observing her taking advantage of breaks to ask questions of orthotists, reckon her take home message from the conference is, time has come.

My take home message has been four days of lying flat. Should be more of it.

Once the polio brain clears, will blog on more technical useful aspects of ‘Life Stage Matters’. These few thoughts have been purely reactive: MTC

Feel for the scarecrow Shredded by strong winds Stuffing blasted from its arms Brain like chaff and prop awry. There's no reproach Shaggy state endured Protecting the crop Until the last wisp Of straw is gone. Debilitated but not destroyed.

Captions l to r: MCA foyer where we went to a welcome cocktail party on the roof over looking the Bridge and Harbour. Yen Tran and Fran Henke; Marmaduke Loke; Tina Demetri; Joan Headley. Below, the full intriguing sculpture.