I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
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.
Then, I stopped my pity party and realized that I could still DO so much, so I put FA in a little manageable corner and got on with life. Yes, it was always in the room, but it was just there. It wasn’t dominating my life anymore. It wasn’t winning.
Then FA would demand acknowledgment. I would fall. I would just be having a bad week in which I was physically and emotionally drained. FA would consume my attention again. I would have to slow down and focus on my condition again.
I realized that I couldn’t segment FA out of my life. It is a factor in all aspects. It affects how I mother my children, how I do girls’ night with my friends, how I travel, how I sleep, how long it takes to get dressed. So, I am getting back to my spontaneous planner roots. I am saying “Yes!” I am living my life, but I am also making logical steps to accommodate FA.
There are times when FA is a more consuming part of my life, like when I travel across the country once a month for a clinical trial or deal with a broken ankle from a particularly bad fall. But I surround myself with enough positive distractions and obligations that FA is just part of my life — not the entire thing.