The View from My Standing Frame

As I type this column, I’m standing about 5 feet, 11 inches tall. Honestly, that’s a couple inches taller than my natural height. The platform for my feet on my new standing frame is raised, resulting in a slightly exaggerated height when I am upright.

Nevertheless, because I am in it, I stand. Upright.

I didn’t expect the view to feel this different. Since transitioning to the full-time use of a wheelchair in college, I’ve grown accustomed to witnessing life from a seated point of view. Even my dreams, crazy and adventurous as they are, always seem to be experienced from a seated position.

Beginning in childhood, I totally embraced my identity as a victim of Friedreich’s ataxia (FA). Its degenerative symptoms only intensify over time. To this day, I can easily feel powerless. A frail boy stuck in quicksand. My philosophy has been that not struggling would allow me to sink to my death more slowly.

It took me about 25 years to realize that mindset is wrong. Choosing to be a victim — waiting on someone or something else to make everything better — is not humble. It is cowardly.

I can say that because I am a coward.

But I am trying not to be one. Sometimes all it takes is seeing from a different viewpoint.

Rather than identifying as the lowly victim of my struggles, I choose to battle the obstacles in my way. That sounds much nobler than I am in reality. These days, I prefer to be hardheaded and unwilling to accept being a victim. I am a Cajun, after all. Part of me will always be canaille.

A standing frame is not a quick fix to change a viewpoint. It’s not even beneficial for everyone — even those with FA. Whether you battle FA or another challenge, find a different viewpoint. Know that whatever issue you face doesn’t dictate your life. You do.

Sometimes it’s almost impossible to feel hopeful while shackled to FA. I know this all too well. I’ve found that when the negative, pessimistic, nihilistic thoughts get so loud that I struggle to get out of bed, it’s never too late to see things differently. It’s not too late to change my mind.

I haven’t seen my room from a standing position in almost two decades. It’s remarkable to see the tops of bookshelves and dressers, to be at eye-level when talking with a friend.

My view is much better. All I had to do was to change perspectives. Join me.

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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.