It’s funny how cliches about life have started to make sense to me. From my observations of other rare disease communities, I’ve learned that when we reach a certain level of acceptance about our disease we gain a different understanding of life. When expressing myself, I try to use more descriptive language. I use cliches to describe my emotions as they seem to fit every situation I face.
I post updates on Facebook of my experiences, including the epiphanies I’ve had. I’m interested in the phenomenon of social media and how updating your friends seems almost obligatory. A recent post about why cliches exist and how they apply to my own life had a large impact, judging by the volume of messages I received.
The response to the post helped me discover who my audience is. I’m often misunderstood. People think they know everything about me because of how much I share. That makes it tricky when trying to write a relatable column or post because my audience is a mix of fellow Friedreich’s ataxia (FA) patients, their families, people I have grown up with, and those who are unfamiliar with neuromuscular diseases. I felt that this post gave some insight into my soul.