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By Susan Biggar

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My husband, Darryl, is a hang-gliding pilot. He was born to fly something, I think. He built his first (makeshift) hang-glider when he was 15, flew fixed-wing gliders early in our marriage, later switched to microlights and eventually found his way back to hang-gliding about five years ago.

Recently there was a tragedy in his close-knit hang-gliding community when a young pilot, one of the few women in the sport in Victoria, died in a very freak, unexpected accident. The community was hit very hard as most people knew her, and were devastated for her family and their tragic loss.

There is the personal loss, but there is also the fear that this could be me. The immediate response is to try to differentiate, to find some problem with her equipment, skills, something that allows you to carry on doing something you love without fear. To continue to have hope and belief that your future will be different. On hearing the dreadful news, Darryl immediately texted another pilot, one who had seen occasional tragedies over the years, asking him ‘How do you cope with this?’ Meaning: ‘How do you tell yourself that the same thing won’t happen to you?’

I think this is very real for us in the CF community. We hear about a terrible loss and go into self-preservation mode: How can I tell myself that the same thing won’t happen to me or to the person I love?

Over the past two decades, I have built an arsenal of skills for denying and ignoring the worst-case scenarios, preferring an all-encompassing optimism to fill the space. I continue to believe wholeheartedly in optimism, depend on it, oxygen-like. I remember a conversation with a transplant doctor years ago at an international conference. My sons were in early adolescence. He told the story of a young girl who had ended up with a very early transplant. Darryl and I spoke to him, intent on trying to differentiate her case from that of our sons. ‘Did she get nasty bugs early? Did she have a particularly destructive mutation? Did she…?’ We needed to find a point of difference that would allow us to maintain hope for our future.

The reality for us in the CF community is that we see the worst things happen to some of the best people and their families; people very much like us, people who we often come to know and love. And I wonder if we don’t know what to do with that mixture of sadness and fear it strikes in us. We are impacted by these heart-rending losses. They hit us, they hurt us, they remind us of the precariousness of life.

Meanwhile, we quietly ferret around in our minds for differences, factors that will lead us down a different path, to a different future for our family. I used to wonder, guiltily, if I was the only one doing it. The only one coping with the loss of someone much-loved in our community by trying to imagine a distinct future for our family. I don’t think I am the only one. We must do it. It is our fragile link to hope. And hope is what gets us out of bed every day. Hope in treatments, new medicines, transplants, cures—hope wherever we can find it.

Darryl is still hang-gliding. He carries the loss with him, and continues to be grateful that he can do what he loves most. In our CF community, we feel the pain of others, we carry that loss. Yet medical advances and research march on. We hold a deep, persistent hope that propels us forward toward a better future.

 

This article does not necessarily reflect the values of Cystic Fibrosis Community Care