Happiness Doesn’t Require Me to ‘Get Better’

A few years back, I wrote a letter to my mom describing my perspective on life and myself.

While there was no urgent need to write such a letter, I had a deep desire to affirm for her, as her youngest child, that I have accepted the challenges I’ve faced and chosen to move forward despite the hardships. I wanted her to know that I was mentally and emotionally good with how life has unfolded for me.

As I was thinking about what to write, I kept returning to the word “happy.” Ultimately, I wanted my mom to know that I was happy with my life and fulfilled with the journey I’ve been on. I’m not a parent, but I have heard parents often say they just want their kids to be happy. I’m glad to say that I am.

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Life throws us all curveballs. Money, education, talent, skill, and connections can’t help us avoid all of the hardships we face. While they can certainly help in some situations, nobody has a “perfect” life.

Have you ever noticed how some people think life must be a certain way for happiness to be experienced? And that happiness isn’t real with a disability?

Last week, I arrived home early one day and several kids were out riding their bikes and playing in their yards. One young man, who must’ve been about 10 or 11, walked by as I was unloading my walker from the car. Like children often do, he slowed down to stare at me.

After watching me for a few seconds, he said, “I hope you get better.” I smiled and expressed my gratitude, and as we went our own ways, he wished me a good night. He was one of the youngest, most polite strangers I’ve ever spoken with, and his words resonated with me.

He didn’t ask me what happened or what was wrong. Instead, he simply wished me goodwill. Granted, I did think to myself that I won’t get better, and in fact, I’ll get worse. But he had good intentions, and I don’t think he was looking to debate medical science or discuss the lack of a cure for Friedreich’s ataxia (FA).

In my quick assessment, I believed the young man sincerely hoped I wouldn’t need a walker for too long.

But as his words replayed in my mind over the next couple hours, I began to wonder why he thought I needed to “get better.” Unfortunately, too many people believe that a life-altering hardship, such as a disability or a rare disease, can’t coexist with a full and fulfilling life.

Life is good, and that fact doesn’t depend on how FA affects me.

While I can’t really write a personal letter of affirmation to the world like I did for my mom, I hope that more and more people will recognize that a good and fulfilling life doesn’t have to mean disability doesn’t exist.

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.