Reflecting on My Life Before FA

Frankie Perazzola avatar

by Frankie Perazzola |

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spirituality, accommodations, internalized ableism, broken bone, fitness, newly diagnosed, reflecting

Oh, selfies! What a wonderful way to waste time, learn the best facial angles, and finally get a good picture of ourselves, because the ones we are tagged in usually misrepresent us completely. Ha-ha.

As I stood in front of the mirror the other day, I took a picture of myself. Then, I realized my walker was not in the frame and I looked somewhat abled. My posture was upright, my knees were bent, and I could take the picture without holding on to something. What was happening?

Immediately, I became nostalgic for the days before my diagnosis and how it felt to not be mobility aid-dependent. It hit me like a ton of bricks, and it hurt. I miss not having to think, “left foot, right foot” every time I walk, not worrying about accessibility, and not being tired all the time.

There was a time when Friedreich’s ataxia (FA) didn’t exist in my life, and I’d be lying if I said it didn’t frequent my mind. Seeing how FA impacts every single aspect of my life now can get overwhelming — especially when compared to my previous life. I miss being carefree, having choices, and feeling like I had ultimate control over my body.

Seeing that picture took me back to a time I crave. A time I cherish. It bothers me that I want to go back and be that person physically again. This is when I have to remind myself that I’m human, and it’s natural to have these thoughts. To miss who I once was. But I also must embrace what I have now and focus on what I can change.

Dealing with FA has taught me how to grieve the life I once had and celebrate what I have now. Of course, I wish FA never existed and that it was never part of my life. However, I have to deal with the cards I’ve been dealt, and this feels like the healthiest way. Acknowledging the grief and understanding it as a natural emotion make dealing with FA more tolerable. 

Sometimes, after reading back over my columns, I understand how it might seem like I am telling others how to deal with their diagnosis. But that is not the case at all. I have gone through everything I write about. I will never speak on a topic if I’m inexperienced or uneducated about it.

Please feel free to comment below to further any discussions!

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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.

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