Being called a warrior when I feel like anything but

There’s a lot that comes with the territory of having a visible disability, especially if you choose to live your life out loud rather than hide.

I never imagined I’d have to make that choice until I was diagnosed with Friedreich’s ataxia (FA) in 2013. Back then, I understood the basics of the progressively degenerative neurological condition, but I now realize that I had no real idea what was in store for me.

I knew that the symptoms that had led to my diagnosis would get worse, and that there would be new ones, too. I also knew that I’d depend on mobility aids for most of my life as my body continued to betray me. What could I do about that?

I was thrust onto a platform I never anticipated: My emotional strength would be on display as my physical strength and abilities failed me. I was determined to use this undesirable yet powerful platform to raise awareness. I didn’t want FA to be part of my story, or anyone else’s for that matter. Therefore, I decided not to hide my disability, and if people find that inspiring, then that’s just icing on the cake.

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I openly share the highs and lows of life with FA, but I also show that FA isn’t all there is to my life. I value my roles as a wife, mother, and friend; those define me more than my disability.

To accomplish this, I’ve become practiced in compartmentalization. A lot of times, that looks like putting on a brave face and smiling through whatever FA inflicts on me. People’s perspectives differ, but the most common assessments I receive are glowing comments about being a warrior or being strong.

I feel so conflicted about having those words applied to me, and I react differently every time.

Am I really a warrior?

Overall, I feel seen, validated, and encouraged. The majority of the time, I feel so weak and incapable because of how I physically bumble through my day. So when someone sees past the physical weaknesses and acknowledges the mental and emotional strength it takes to simply keep going, I stand a little taller and fight a little harder.

On the other hand, it can seem like an unfair challenge to keep being “strong” because people are watching. More often than I care to admit, I feel like I have the physical, emotional, and mental strength of an overcooked noodle. How can I put on a brave face when I feel terrified and so very weak? How can I be a warrior when I feel like the opposite of one?

For me, it’s simple. I remember the months after my diagnosis when I gave up. I thought that since my physical future was now decided, it was as good as over. I didn’t fight for the life I wanted because it seemed impossible.

I was only 25 years old and didn’t know that there were other paths I could take. Life certainly hasn’t gone the way I thought it would, and I never envisioned my path having so many potholes, adaptations, hardships, route changes, and obstacles, but my destination remains unchanged. If people learn from or are inspired by my journey, then I’ll take that for the compliment it is.

“That is why we never give up. Our physical body is becoming older and weaker, but our spirit inside us is made new every day. We have small troubles for a while now, but these troubles are helping us gain an eternal glory. That eternal glory is much greater than our troubles.” — 2 Corinthians 4:16-17

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.