Whether you have or don’t have Friedreich’s ataxia, you are relevant

“The Real Housewives of Beverly Hills” is one of my pleasures. I’m intentionally not writing “guilty pleasure” because I don’t feel guilty for watching the show, even though it’s silly and does nothing for me except that I enjoy their petty arguments and hurts.

But cozying up with some hot tea as they drink too much, buy too much, and navel-gaze too much is a simple pleasure for me. I’m not alone, but I get it if you hate the show.

Recently when I was catching up, one housewife accused another of making up things to be angry about so she could be relevant to the show. First of all, come on; I’m pretty sure they’re all getting angry over dumb things to maintain their audience. They’re all maladjusted.

But second, and my rant of the day: The wife’s comment implies that human beings can be irrelevant. I don’t think they can.

Lately, I’ve heard the term “relevance” used to describe people, usually celebrities or politicians. It’s typically used interchangeably with “popular.” I hate that. It suggests that someone isn’t relevant if they aren’t popular.

Recommended Reading

February 29, 2024 Columns by Kendall Harvey

It’s time to stop overly relying on my Friedreich’s ataxia ‘can’t do’ list

‘Relevance’ for the chronically ill and/or disabled

Maybe I have trouble with that use of “relevance” because I see many unsung heroes in my Friedreich’s ataxia (FA) disease community. Or is it my internal struggle, in which I imagine all the big ways I could affect the world, but then realize my FA symptoms limit me?

Thinking that I’m not as meaningful to the world as I could be is just another way to be hard on myself. It neglects to acknowledge that I’m dealing with a disease that strongly affects how I can live. Even worse, there was no treatment for this disease until about two years ago.

I know a single mom who does everything possible to make a nice life for her children with FA. Her kids are more severely affected by FA than I am. They traveled, went to college, and now have jobs. She and they made and continue to make that happen. They’re relevant not only to one another, but also to the FA community and the larger chronic disease world.

I don’t think they’re popular in that big stage way, but that’s irrelevant (ha!). They’re people we can look up to for living meaningful, purposeful, and intentional lives.

In my life, I have many moments when I do things irrelevant to my life’s purpose, which is improving the lives of people with FA. One clear example is watching the antics of zany housewives. Perhaps watching simple, brainless TV is relevant because it helps me reset and bring energy back to my personal mission.

I also have days when I lick my FA wounds or am overwhelmed by my daily activities. On such days, I can’t act in a way that’s relevant to my personal mission. Not every day relates to that purpose, and that’s OK.

I’m not an irrelevant person, however. I’m a person limited by FA. Even if I were a person who didn’t intentionally live a mission, I’d still be relevant to my friends and family. FA limits what I can do, but it doesn’t limit my importance in this world. That’s as true for every member of the FA, rare disease, and disabled community as it is for me.

Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.