A Problem Shared
While I didn’t go to the earliest camps, there wasn’t a huge number I didn't attend. Usually held around the last week of school, they ran for a week and were usually at Sport & Recreation facilities. Venues varied from Broken Bay to Narrabeen to Yarramundi and also to a Brother’s Retreat at Mittagong. The age of attendance was between 10 and 18 and they were mixed camps.
The kids there were your average sort, they fought, argued, played, kissed and made up but the main thing that made these camps different from others was the treatment. Every morning and night, most had their ice cream buckets with nebulisers ready for a good half hour session, followed by the ritual hour-long beating that was physio. I'm sure it would be a strange event to watch from the outside as around 60 kids would be sitting around breathing in what looked like steam and getting pounded afterwards. To those at these camps, this was business as usual amongst our friends, something we all shared which made us a little different to our other non-CF friends and where we could feel comfortable that others shared or even had a larger fight to fight than we did. There was always an unspoken bond between us that there was no difference amongst us as to who was more or less severe, all were equal and we appreciated the moments we spent together.
Another big part of my life was the Sou'Westers supporters group that my mother and other parents of children with CF in our area started up as both a fundraising and support group. I used to love the Christmas parties in the sun at Maianbar and was blessed with the company of some good friends in an extended family environment. The families all became extremely close and gave support not just to those of us with CF but also the parents and siblings as we all faced (and continue to face) the challenges in our lives.
I recall these times as a source of inspiration and comfort to me as I face growing older with CF. I know I'm never alone as I have shared in these lives around me and seen much of what I have gone on to experience or know that one day I may. The closeness of these relationships and the strange intimacy caused by the shared illness is not something easily found in life and something I forever treasure.
Unfortunately, as most know, much of the contact between people with CF was stopped a few years ago due to an increased awareness of cross infection issues and also some nasty new bugs that are resistant to antibiotics. While it is extremely hard to recreate these types of friendships given these restrictions, there are options available today to provide some contact and remove the sense of isolation that this policy will inevitably create. There are the forums on the new website, penpal programs, the peer support program, siblings and parents events and other casual contact options out there. Many of the fundraising and information nights also provide contact with the CF community and some positive shared experiences can make the world of difference – and while support groups don't seem to be the fashion any more, I dearly love all of those in mine as participating in any CF community does bring unexpected rewards – that a problem shared, is a path to a special life.
Bryson Vaughan
