Cystic fibrosis


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Did I mention we have three ‘life-threatening’ conditions in our little family of five? As you know, I have come through the ups and downs of the breast cancer experience, while my husband, Steve, has Type 1 diabetes (doing well for 30 years now) and my middle daughter was born with cystic fibrosis. Makes for a trifecta, doesn’t it! I remember expressing my overwhelm to my breast care nurse, ‘I must have run over a Chinaman’. She was wonderful. She suggested it must have been a bus load! (My thanks to Phil Smith who explained this term beautifully. To run over a Chinaman is an Australian slang expression dating back to the 1850s and means that someone has an inordinate amount of bad luck – no offence intended).

But we’re all going strong. And for the most part, we don’t focus on the conditions, and they don’t dominate our lives. We’ve learnt to live with them and manage them well. Sure we have flare ups from time to time but all in all they just fade into the background as we continue to get on with the joy of living. I think in part this has a lot to do with building ourselves a buffer. By this I mean building our strengths – mental, physical and emotional. And this can be a winning strategy, can’t it. Do you recall a few years back the winning Olympic ping pong team did something a little different? They focused their training on developing their strengths, not improving their weaknesses. And didn’t that turn out to be an incredibly successful strategy. Perhaps one we can learn much from. Because we all have strengths, don’t we.

And this is how we approach our health challenges. Take for example my daughter. At nine years of age she knows her lungs are strong. And they really are. 100 breaths a day she does on a PEP mask to strengthen and clear her lungs. I tried it once and she beat me hands down. The hospital was surprised when I mentioned how part of our management includes helping her to develop a strong mental picture of herself. After all, everyone knows it’s those with the mental strength who pull through, isn’t it. If it wasn’t for our understanding of the importance of this, we may have raised her believing she had a life shortening disease. But what good could that possibly do? It doesn’t make for happiness or longevity, does it. If she believes that, she might just give up trying.  The Hunger Games puts it beautifully. “I can’t afford to think that way’. And that’s why I have some issues with the ads that are running to raise money for cystic fibrosis at the moment. A friend raised the alarm when she saw a subtitle flash across the screen ‘The average age for someone with cystic fibrosis is 37 years’. Perish the thought if ‘37’ got into her psyche. We’re all going for 100! Thankfully I haven’t seen one of these ads and neither has my daughter. I certainly don’t mean to be critical, but I wonder about the wisdom of these ads. I wonder about the psychological cost.

Because these sort of messages, these statistics, are not really accurate, are they. They are one thing at face value, and quite something else when we look a little deeper. And therein lies the danger. For starters, there must be a number of people who live well beyond 37 to average this life expectancy. So why shouldn’t my daughter be one of these people? After all, she’s got the added mental advantage from an early age. And we build her strengths at every opportunity. Build up rather than wipe out as often as possible. I want her to believe that longevity is possible for her too. Secondly, these stats must be retrospective. This number ‘37’ can only be based on people who have lived and died up until now. They are relevant to the people who have gone before. It doesn’t account for the fact that the people living with cystic fibrosis today have the benefit of new medical treatments. And I am very grateful. Because most of all, the number ’37’ doesn’t convey that they are talking about a cure within 5 years. Magic words I never expected to hear in my lifetime. A bit like when they developed insulin for diabetes. Because they are always developing new ways to treat things, aren’t they.

So while we hold tight and await a cure, we will continue to give thanks and build our strengths. Because sometimes, making something stronger can be the best defence…