What the Queen’s Death Means to Me as Someone With Friedreich’s Ataxia

Queen Elizabeth II's death prompts this columnist to reflect on inheritance

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by Matthew Lafleur |

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I read the headline on social media and shrugged: “Queen Elizabeth II, Britain’s Steadfast Monarch, Dies.” My Thursday continued mostly unaffected.

I normally don’t pay much attention to the British royal family, but in the past few days, I haven’t stopped thinking about the queen’s passing. Perhaps writing about it will help me parse out my contradictory feelings about the death of a queen I never paid much attention to.

One reason I mostly ignore the British monarchy is probably rooted in my identity as a liberty-loving American. Early revolutionaries of my country fought and died for the ability to choose their own leaders, so it seems strange to me to admire a royal bloodline.

Even though I’m not very invested in the royals, I respect that many others are. After all, Queen Elizabeth II not only survived several assassination attempts and, in some opinions, modernized the royal family so that it is still relevant today, but also, according to World History Edu, “virtually all of Britain’s colonies [in Africa] gained independence during her reign.”

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FA Progression No Longer Has Total Control Over My Life

However, another reason I dislike the idea of idolizing anyone because of their circumstances at birth has nothing to do with patriotism or my own haughtiness. It’s because their inheritance reminds me of what I inherited — a progressive condition called Friedreich’s ataxia (FA).

The British royal family’s enormous wealth, fame, and influence are not based on their merits and accomplishments, but on their lineage. Maybe I am bitter that my genetic lineage led me to a wheelchair instead of a throne. My disdain for the royals probably isn’t rooted in righteousness and equality, but in stupid jealousy. After all, if we were given a choice between being born into royalty or being born with a genetic disorder, anyone who says they’d struggle with that decision is lying.

And yet, maybe that is also a reason to admire Queen Elizabeth II. Just as I didn’t choose FA, she didn’t choose royalty. My friends Sean Baumstark and Kyle Bryant of the “Two Disabled Dudes” podcast live out a theme in all they do: “Live beyond your circumstances.” Sean and Kyle, both also diagnosed with FA, make the important point of not allowing whatever is outside of your control to make you a victim. We have goals to accomplish, regardless of what we inherited and never asked for.

Just as I didn’t expect to develop a rare disease, Elizabeth didn’t expect to be named queen, since she was not the heir apparent. So maybe we have that in common — trying to do good, born into roles we didn’t choose.

For what it’s worth, Elizabeth, you wore the crown well. I’m still not a fan of royalty, but I think you and I are opposite sides of the same coin. I hope to have a tiny bit of the positive impact on the world that you did. I won’t rest until my cruel and fatal genetic disorder is destroyed; but in the meantime, I hope to wear that damned FA as regally as you wore your crown.

“When life seems hard, the courageous do not lie down and accept defeat; instead, they are all the more determined to struggle for a better future.” — Queen Elizabeth II

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.


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