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.
The biggest things in our lives tend to occupy most of our brain space, such as family, significant others, friends, jobs, goals, pets, finances, plans, and so on. I have an additional big thing: Friedreich’s ataxia.
Before I was diagnosed with FA in 2013, I was just like every other 25-year-old, and no genuine life-or-death struggles complicated my thoughts or plans. After I was diagnosed, FA took over most of my thoughts. Even now, seven years in, I estimate that FA enters my conscious thoughts about once a minute. Sometimes it’s just a subtle acknowledgment, while other times it’s a deep thought or depressing realization.
Even if I start thinking about something else, my trail of thought usually takes me in the direction of FA.
For example, I can sit down to have lunch with my kids. Everything might be going fine when I see my daughter take the last sip of water out of her sippy cup. My brain will switch to autopilot, and I might think, “Can I reach my walker now or do I need to stand to reach for it? Is there kid stuff all over the floor, or can I easily wheel over to her to get her cup to refill it? Did my husband fill it last? If so, I hope he didn’t tighten it too much, or else I can’t open it. FA makes something so simple and mindless as refilling a sippy cup complicated!”
Many friends have told me they want to ask about FA and how I’m doing, but they don’t want to make me think about it. I always respond, “I am always thinking about FA in one way or another, and I’m an open book. Always feel free to ask me anything. I don’t often bring it up, but I am always willing to talk about it.”
Like everyone, I strive for balance in my relationships. It’s give and take. If I turn every conversation into a rambling dissertation about my disease or a therapy session in which I dump all of my thoughts and feelings about FA, I doubt many people would want to keep talking with me.
It’s like if someone else only talked about work, the current show they’re watching, or their dog. It might be interesting for a while, but there’s more to them than one aspect of their life, even if it occupies most of their brain waves. It’s a good idea to listen as much as to talk, and to cover different topics.
I don’t want people to hesitate to broach the subject of FA with me. I could talk about it endlessly. I strive to be open and approachable.
However, there is more to me than FA. That’s why I don’t always bring it up. Even though it occupies a majority of my thoughts, it isn’t the star of my life. I prefer talking about enjoyable things or topics that people can relate to. Not everyone has a progressive, degenerative disease with no cure, but most people can relate to family anecdotes, work stories, or similar topics.
All this is to say: I am happy to talk about FA, but I usually won’t bring it up first. I like escaping my dark, spiraling, FA-centered thoughts when I have the chance. In other words, I am just like everyone else!
Disclaimer: This is my personal approach to my disability. Not everyone with other abilities is happy to talk about their condition. As with anyone, use your best judgment when you’re curious. Also, please share your thoughts in the comments below.