Since my 2013 Friedreich’s ataxia diagnosis, the condition has consumed a part of every day. I was prepared for the physical changes that would come with FA, but the mental and emotional stress has surprised me.
It is a factor in almost all of my decisions, both big and small. I have to think about my limitations and how destinations will affect me. Are there stairs? Is the ground bumpy and holey? Can I use a shopping cart or should I bring my walker? Should I just put it off until someone can go with me?
I have always been a planner, but I was a spontaneous planner. I know that sounds like an oxymoron. Let me explain: I was spontaneous but I was good at quickly thinking ahead to accommodate my spontaneity. I quickly executed plans to make things run smoothly. And everything generally worked out just fine.
Then FA came into the picture. I lost my confidence along with my spontaneous gumption and my planning mojo. I found my anxiety and my introverted tendencies. I was scared of looking or feeling “disabled,” so I just didn’t say “yes” to things. I was self-conscious that people were expecting happy, carefree Kendall and would be disappointed when “I’m just having a rough day” Kendall showed up instead.
So, I let FA rule my life for a while. I let it win. I was in a dark season.