There’s a character in The Hitch Hiker’s Guide to the Galaxy by Douglas Adams called Rob McKenna. Rob is surly, grumpy and intolerant because it’s raining. In fact, wherever Rob is, it’s always raining. As Douglas Adams explains: “… for, though he did not know it, Rob McKenna was a Rain God. All he knew was that his working days were miserable and he had a succession of lousy holidays. All the clouds knew was that they loved him and wanted to be near him, to cherish him, and to water him.”
FA is a bit like a storm. If you’ve been diagnosed with FA, consider yourself a Storm God. FA is genetic. It’s in every cell in your body. All it knows is that it loves you and wants to be near you, to cherish you, and to stop those cells from producing Frataxin!
If your FA is a storm, your diagnosis is a lighthouse. The storm can be just as hazardous but at least you know where you are.
FAers have differing reactions to a confirmed diagnosis. For many it can take a considerable time and they go through stages, like stages of grief, before accepting their FA as something that’ll henceforth be part of their life.
Two things are worth bearing in mind about your diagnosis:
- You’re lucky: Going by the generally accepted figures that there’s a 1-in-45,000 incidence rate of FA globally among Caucasians, there are probably more than 500 FAers in Australia. FARA has details of less than 200 which suggests there could be more than 300 out there either not diagnosed or misdiagnosed.
- Once you accept it, you begin to take back control of your life. You can use your diagnosis like an anchor or navigation point that all other aspects of your life need to take account of. The way Kyle and Sean describe it in their excellent podcast series (link), once they began educating others about FA and joined fundraising for research each felt “I was controlling my FA rather than it having control of me.”
You know you’re a Storm God so use that knowledge! Be purposeful. Use your diagnosis as a starting point and set up your working conditions so you won’t be miserable. Plan holidays that won’t be lousy. Be Godly and enjoy it.