Reminding myself that my worth isn’t defined by my ability

I’ve been struggling with my mental health lately. I’ve been grappling with feelings of inadequacy rooted in my Friedreich’s ataxia (FA) and subsequent inability to be an independent and effortless helper in my family, integrally or physically. I’ve felt like a burden, incapable of benefiting those around me — especially my husband and children.

This inability to do physical tasks because of my FA symptom progression is nothing new. In fact, it’s an issue that’s been building for about six or so years, since I started using a walker full time in 2019. It comes and goes in waves, as does my ability to sink or swim in rough waters.

I’m no stranger to the toll of these feelings, but for some reason, the waves have felt more overwhelming this time. I feel unanchored, yet simultaneously glued to the sidelines of my life.

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In previous seasons, I’ve combated these feelings by focusing on what I can do rather than what I can’t. I can’t hike down to a local pond to take my 10-year-old son and his buddies fishing, for example, but I can invite his friends over to swim and play on the trampoline. So I slap on a smile, order pizza, crank a Spotify playlist, put out bowls of candy, and host a fun summer bash in the safety of my home.

Yet I’ve had a hard time finding joy in such moments because the list of things I can’t do seems to keep growing, especially as I become increasingly dependent on a wheelchair instead of a walker.

I want to have cannonball contests with my children. I want to help my husband with yard work by mowing. I want to make goofy TikTok dance videos with my mom friends. I want to run for exercise with the women in my neighborhood. Simply facilitating and watching fun doesn’t feel like an adequate substitute for actually participating in it.

Choices

So what are my options?

The way I see it, I have two. In one, I continue to live in a funk under the weight of all that I can’t do. That’s valid and understandable, but it’s the path I’ve been on, and it’s leaving me unfulfilled and unhappy. I don’t think that’s the right choice for me anymore.

The second option is to fight to add more activities to my can-do list and find contentment, purpose, and joy in those. Just because I’m sitting rather than standing, just because I have less energy, and just because my speech feels slower and less articulate doesn’t mean that I should stop trying to do or say what I can.

Therefore, I’ll try to snap out of my funk by choosing Option 2 more often, with the hope that it’ll help me lead a more fulfilling life. After all, my worth isn’t defined by my abilities, or lack thereof.

“Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is — his good, pleasing and perfect will.” — Romans 12:2 (New International Version)

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.