‘Here be dragons’: Navigating unknown territory in life with FA
When it comes to Friedreich's ataxia treatment, we must chart our own course
I’m no cartographer, but the adventurous part of me has always awakened when I hear about the saying supposedly inscribed on ancient maps: “Here be dragons.”
Even though historians now believe that the phrase was only used on a single 16th-century globe, the rumor that most medieval maps warned that dragons abound in uncharted areas is widely believed. Since people tend to avoid and fear the unfamiliar, this rumored warning makes sense, even though there were probably no mythical creatures back when the maps were drawn.
This type of mental association is known as magical thinking, or finding supernatural meaning in everyday situations. It explains why we assume shadows in the dark are threatening, unpredictable circumstances are called “acts of God,” and unexplored territory might be labeled “Here be dragons.”
Magical thinking can be incredibly comforting to those of us with Friedreich’s ataxia (FA) since, according to Psychology Today, “Sometimes people look for meaning in strange places; that’s because the brain is designed to pick up on patterns. Making such connections helped our ancestors survive what they didn’t fully understand.” Because no two FAers present the same, with varying symptoms, onset ages, and progression rates, we ache to find a pattern in our life with this rare disease.
For me and others with FA, existence is most effortless when it follows a pattern. I’m comforted when poems rhyme, as I’ve written before. And it’s exhausting to constantly worry about which physical abilities I might have each day. But sometimes I wonder if FA or simple maturity has jaded me and impaired my childlike and adventurous magical thinking.
However, although I no longer believe in Santa or the simplicity of life before FA, my magical thinking hasn’t been abandoned. It’s still there, just redefined. I may not believe many sea serpents or dragons once existed, but I recognize the fear of the unknown in those early mapmakers.
It’s easy to believe there are monsters in the unknown, especially in life with FA.
Strong and brave
Many of us in the FA community have been overwhelmed since the first treatment for FA, Skyclarys (omaveloxolone), was approved earlier this year. Reaching this milestone is thrilling, but many remained concerned about the availability, pricing, side effects, and overall effectiveness of Skyclarys and future treatments.
These concerns are valid. We must work to ensure that available treatments are accessible to all FAers, regardless of age, geographic location, and cost. And, as I hoped to show in a previous column, it’s important to be aware of any medication’s potential side effects.
Sometimes, though, these reasonable concerns fester into harmful conspiracies. Instead of seeking to expand access, learn about possible side effects, or acknowledge that the first FA treatment was never intended to be a cure, I’ve seen some in our community vilify pharmaceutical companies, insurance agencies, and even nonprofits that exist to find a cure for FA. Many seem to be discouraged that Skyclarys hasn’t eradicated the challenges of living with FA.
Since the dawn of Friedreich’s ataxia treatment has just begun, the sky still looks dark. We may still see monsters in the shadows. There’s no set path for people with FA to follow. We find ourselves in unexplored territory.
Here be dragons.
Maybe the important lesson from magical thinking isn’t so much in the reality of ancient cartographers’ descriptions, but in the stories we tell ourselves. As the quote attributed to G.K. Chesterton goes, “Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten.”
May all of us in the FA community remain strong and brave as we chart our own course.
May the inevitable fear and confusion be quickly overcome.
May we accept the title of “Dragon Slayer.”
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.