Let FAN be your “tap code”

Remember Jim Stockdale? I wrote about him here. He’s the champion of self-taught resilience, the guy who emphasised the importance of balancing a positive expectation of a future outcome with a realistic perspective on the harsh realities of today.

Well the key to Stockdale’s ability to keep on keeping on was social support. Stockdale was one of what was known as The Alcatraz Gang. He was kept in solitary confinement for years, lights on 24 hours per day. These prisoners would be harshly punished just for talking to one another.

So they developed a tap code. It was a kind of Morse code that enabled them to communicate and even though they never spoke, many of those prisoners developed friendships through that awful shared experience which endured strongly years later. And they said that without that tap code they wouldn’t have made it.

As Dr Dennis Charney, a psychiatrist who is developing treatments for depression and other anxiety disorders says, “Everyone needs to develop their own tap code”. Each of us needs to develop a social network that we can rely on. People who can understand what we’re going through and help us consider alternative perspectives when times are tough.

That’s what FAN is for.

Probably the first thing anyone notices when they meet a bunch of FAN members is that we’re all so different. FA affects everyone differently, from age of onset to severity and rate of progression. And FAN is made up of everyone affected by FA, not just FAers themselves. There are family, carers and friends too.

In another way though, we’re all the same. Each of us deals with FA differently but each of our lives is impacted by it. When we get together we chat about all kind of things, not just FA. But if anyone’s facing a particular issue, or has a useful tip to share, this is the right group to share it with.

There is amazing research going on to find treatments for FA and eventually a cure. But in the meantime the best resource we have, to navigate this crazy and changing world, the opportunities and frustrations of government support services, the slings and arrows of outrageous fortune, is one another.

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