Allowing Time to Contemplate My Disabilities Is Helpful

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by Sean Baumstark |

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If you’re anything like me, you spend a lot of mental energy thinking about “what might be” and dreaming about “what could be.”

I’ve always had big aspirations, and I reach for the stars when I set my sights on something. I don’t easily give up or settle. I have high expectations for myself, and most of the time, only the best will do. So, when I dream, I dream big.

Those moments are so much fun for me. Sure, some of those dreams may never come true, like winning the lottery and becoming an instant millionaire. My chances of winning are extremely slim, even if I buy a hundred lotto tickets. However, my chances are nonexistent if I never play. If I don’t play, I can’t win. The same applies to the way I dream. My dreams most certainly won’t come true if I don’t have them in focus.

Sometimes I really let my mind wander, especially with millions of dollars in mind. Other times, I just dream about small things or more attainable things, such as buying a perfectly tailored suit, similar to the ones worn in the movie “Kingsman: The Golden Circle.” I even think about what it would be like to sleep for a week or simply not have to maintain a day job.

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Of course, I also often think about what my life would be like without Friedreich’s ataxia (FA). I’ve always been infatuated with dance, and I’m enamored when I see someone move and contort their body in rhythm with music, especially with hip-hop dancing. My Instagram suggested stories feed is constantly filled with talented dancers, like Josh Killacky, and I can easily get sucked in for a while. I wonder if I would’ve been any good had I tried to learn.

When I start dreaming about life with FA in mind, of course I dream about the day the announcement comes that a treatment is undeniably successful, or that the U.S. Food and Drug Administration has approved a medication, or that an absolute cure has been discovered. I think about the possibility of my progression being stopped, and I dream about the damage being reversed. I wonder if I’d take up running, dust off my traditional upright bike, or even take a few dance lessons. Who knows?

Dreaming is easy for me, and probably somewhat natural for most of us. My imagination ran wild as a child, and I’ve always believed anything is possible. I’ve never doubted that.

As valuable as it is to dream, I’ve been experiencing the importance of sitting in reality for moments, too. Reality can sometimes be hard to accept or difficult to face, but I’m finding it emotionally fortifying and freeing at times as well. And I don’t use the word “accept” in the sense of seeing what is and believing it has to be that way. Instead, I mean realizing the facts of something and allowing myself to wrestle with them for a time.

I’m realizing that I often try to move past something hard or painful quickly, immediately trying to identify ways to ignore or get around the challenge. I think about (most) people that suddenly trip in crowded, public places. Most react quickly to get up and brush themselves off, acting as if nothing happened. They’ll even look around to see who’s watching. In these instances, shame, embarrassment, or even adrenaline cause some to react instantly with little thought given to the domino effect or how standing up could make something worse.

I’m not suggesting we have to stay on the ground and count to 100, but I do wonder how effective such a pause could be from time to time? Staying still seemed to work well for this guy, after falling on an escalator.

For me, I’ve been taking these pauses in relation to my health and my disabilities. I am careful not to beat myself up because I walk differently than others, or because my handwriting is slow and sloppy. I can be bummed about those things and even sad. Those are legitimate feelings that I’m learning to sit with. Allowing myself time to contemplate, and perhaps even grieve, those realities has allowed me a little more balance and grace toward myself as I realize I don’t need to walk any differently and my writing doesn’t need to be better.

My optimism and dreams for the future shouldn’t be an excuse for ignoring or downsizing my challenges or hardships today. I can’t let those define me, but I don’t have to let them sit in the front seat all the time.

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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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