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.
I’ve noticed that one-liner advice tends to stick with me, such as “Treat others how you want to be treated” or “If you don’t have anything nice to say, don’t say anything at all.”
I’m sure I’m not alone in this. Since I’ve become a parent, I frequently catch myself saying such phrases to my young children. After all, they’re tried and true nuggets of wisdom for a reason.
For all nine years of my parenting journey, I’ve also been on a journey with the progressively degenerative disease Friedreich’s ataxia (FA). I was diagnosed in August 2013 after a yearlong journey with progressing neurological symptoms. Fourteen months later, I became a mom to a perfectly healthy son, and after another two and half years, our perfectly healthy daughter joined our family.
In a way, my journeys with FA and parenting are so intertwined that they can’t be separated. For better or worse, so much of my fight against FA has been influenced by being a mom, and so much of who I am as a mom is influenced by the realities of my FA.
Because of that, I often process things twice: through the lenses of Kendall the mom and Kendall the FA patient.
In 2018, I found a ministry, Fearless Mom, that changed me deeply on both levels. Its founder, Julie Richard, is a gifted speaker, passionate advocate for families, and dedicated researcher with a hilariously warm personality. She’s added countless one-liners that my whole family uses frequently. There’s one that I quote almost daily, especially as my children get older and navigate trickier emotions and as my progressing symptoms cause more powerful emotions: “Every feeling is OK to feel, but what you do with that feeling matters.”
Acknowledging negative emotions
Lately, my children and I have battled feelings that life is unfair. My struggle with those feelings has equipped me to help my children navigate those same sentiments with more empathy and patience.
As an FA patient, almost every physical activity seems unfair. It doesn’t seem fair that I can’t walk unassisted. It doesn’t seem fair that I haven’t run in over a decade, and I won’t unless there’s a restorative cure. It doesn’t seem fair that there’s nothing I can do to stop my symptoms from progressing. It doesn’t seem fair that I’ll likely spend more of my life disabled than able-bodied.
That unfairness causes all kinds of feelings, and none of them are positive. Yet when I remind myself that “every feeling is OK to feel, but what you do with that feeling matters,” I give myself grace.
When I’m frustrated, I can either let that frustration get me down and pout about it, or I can challenge myself to find a way to rise above that frustration and move forward constructively. When I’m angry at another missed opportunity because of FA, I can let that anger fester and radiate out, or I can get curious about the source of my anger and find a way to help ease that feeling next time.
I’m not saying that every negative feeling can or should be worked through with a patient and careful level-headed process, but it’s a good habit to work on if you find your life being run by emotions.
Living with FA or a similar disability is a challenge ripe with opportunities to fail, try, and try again, so I challenge you to do something positive with your next negative feeling and take comfort in knowing you aren’t the only one doing that. Who knows? Maybe it’ll have a positive impact on your FA journey.
“Pay careful attention to your own work, for then you will get the satisfaction of a job well done, and you won’t need to compare yourself to anyone else.” — Galatians 6:4
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