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Wisdom for the next generation of FAers?
Hello all
Next week I’m to meet with a young family with two daughters (11 and 13) who both have been recently diagnosed with FA. I’m wondering what positive wisdom I can impart to them. I can remember being newly diagnosed (15 or so) and absolutely terrified. Around that time I also remember meeting with a man maybe fifteen years my senior with FA and being equally terrified. He had driven over an hour himself in an adapted van to meet me, and rather than appreciate his bravery or learn from the experience I pitied him. I found myself staring at his power chair, watching with a kind of revulsion as he lifted his coffee slowly and shakily to his mouth. This, I thought, was my future. Of course, with hindsight I cannot begin to appreciate his courage, and the amazing independence he had. This morning, as I lifted my own coffee slowly and shakily, I wondered how I should navigate this encounter next week, now that my role has been reversed. I hope that I can somehow override the optics of the encounter as I experienced it 16 years ago. The man I had met with, I later learned (or was reminded; he may have told me himself that day and in my terror I simply blocked it out) that he had gone to college and graduate school, inspiring me to do the same.
Next week I hope that I can be a similar inspiration, while also mitigating the stress that I had felt as a newly diagnosed FAer.
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