I’m Kendall, and I’m more than just my Friedreich’s ataxia diagnosis

Yes, Friedreich’s ataxia (FA) is hard. Yes, its widespread symptoms are always on my mind. When I am at social events, I am overwhelmingly aware of my disability and the lifestyle adaptations it demands. Despite all of that, it is not the only thing I am capable of discussing, nor is it the No. 1 topic I want to discuss.

I know my life looks very different from most 30-year-olds with young children, and I am always prepared to answer a few questions about that. I appreciate when friends ask me how my femur fracture recovery is going, especially when I can tell that it’s coming from a genuinely curious or compassionate place.

I don’t, however, appreciate being peppered with questions about it when I am in the middle of a different topic, especially one that brings enrichment to my life.

When I’m home, most of my thoughts center on FA and how it affects me. I probably wouldn’t have fallen and required hardware in my ankle seven years ago if it weren’t for how FA affects my balance, and I likely wouldn’t have fallen and required surgical hardware from a femur fracture this year if it weren’t for FA.

I wouldn’t need an accessible van, an arsenal of mobility aids, home renovations, and so much help with simple tasks if it weren’t for FA. I’m not saying my life would be perfect if FA weren’t in it, just that it wouldn’t be so complicated by my deteriorating abilities.

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I am painfully aware of that. Just like I am painfully aware that I am the only disabled mom in our social circles. With that, I have a certain responsibility to educate and advocate. But not always. I don’t always want to talk about the hardest thing in my life. Sometimes, I just want to be Kendall, or Kyle’s wife, or Collins’ and Brooks’ mom — not the FA patient.

Fearless Mom founder Julie Richard is so full of wisdom that has shaped my life. She often gets asked, “I don’t want my kid to be entitled, so what do I need to do?” She flips the question around and says, “Instead of telling me what you don’t want, tell me what you do want. It’s easier to parent toward a goal than away from a fear.”

With that in mind, instead of only saying what I don’t want — such as talking about FA constantly — I will tell you what I do want.

I want to be seen for all of the things that make me who I am. I want to talk about my kids, my friends, my family, marriage, the weather, the new stores or restaurants that opened nearby, new recipes, baseball, our pets, the news, the latest documentary I watched — and occasionally, FA. FA is a big part of my life that affects so much and I don’t expect the world to ignore it, but I want to talk about other things, too.

Philippians 4:8 reads, “Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable — if anything is excellent or praiseworthy — think about such things.”

FA is true for me, so I talk about it. But I also want to talk about the lovely things that bring joy to my life and to those around 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.