An online friend recently commented that living with FA is a “Sisyphean dream.” I haven’t been able to stop thinking about that.
At first glance, the idea seems futile, nihilistic, and ultimately negative. However, I didn’t take it that way. Through the phrase, I see hope. Through that metaphor, I find meaning.
Let me unpack that term a bit.
Sisyphus was a king in Greek mythology sentenced to an eternity of rolling a large boulder up a hill, then watching it roll back down. He’d become increasingly exhausted, sweaty, and frustrated, but would never reach his task’s end. Sisyphus is a symbol of fruitless labor.
Friedreich’s ataxia’s most devastating symptom, in my opinion, is its unfettered progressiveness. There is no treatment or cure, so our symptoms progress no matter what efforts we make. Because there is no stopping this locomotive of debilitation (at least not yet), any labor we undertake may seem fruitless. The dream may seem Sisyphean.
My opinion, though, is that only seeing Sisyphus as a tragic figure, a captive of inevitability, is incomplete.
Often overlooked in that story is the reason for Sisyphus’ frustrating punishment. Sisyphus was sentenced to an eternity of fruitless labor by the gods because of his cleverness: He cheated death not once, but twice! The gods chose to punish Sisyphus in the afterlife in order to discourage others from thinking outside of the norm. They didn’t want people to buck the system, so they sentenced Sisyphus to an eternity of frustration and failure.
Rather than claim that I am like Sisyphus, I hope to show that everyone battling FA is Sisyphean. The frustration we deal with every day is palpable. And even though we may see ourselves as fruitless laborers teetering on the edge of giving up, others see us as pillars of strength. Sometimes we see the truth most clearly when we see from others’ perspectives.
This dichotomy — whether to endure daily frustration or to give in and give up — is always in my head. I haven’t committed totally to one or the other. I’m still trying to figure it out.
What I refuse to do is to completely surrender. Though I become exhausted, sweaty, and frustrated, I refuse to give up. I will continue trying to eat well, exercise, go to the dentist, schedule doctor’s appointments, and remember my mental health. I refuse to believe that doing those things is fruitless. Only in doing so can we prove that our endurance is stronger than the Sisyphean dream we find ourselves living.
Never give up. Your efforts matter. You matter.
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