Finding my own ‘happily ever after’ in a life with Gaucher disease
A columnist finds new meaning in the fairy tales she once cherished as a child
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To me, Halloween is one of the most quintessentially American holidays. I grew up in a Spanish household where Halloween wasn’t celebrated, but my parents made sure I could still take part in the American traditions that were an important part of my childhood.
As a little girl, I would always dress up as a princess, but not just any princess — I wanted to be Cinderella.
I remember loving Cinderella as a child, and I still think she’s the best princess. Sure, most of the princesses had tragic lives — Snow White was orphaned, Sleeping Beauty was cursed, and so on. But Cinderella, in my opinion, was the most human of them, because she represents what we all must learn at one point or another: how to face adversity with courage and still be kind, how to not let what happens to you harden you.
Having never known life without Gaucher disease, I found refuge in Cinderella’s story. Like her, I dreamed of escaping.
Kind and courageous
The funny thing is, I never dreamed of a handsome prince saving me. (That’s not to say it wouldn’t have been fun.)
Most of the time as a child, I would daydream, especially during medical tests like MRIs. While other little girls might have wished for the fairy godmother to give them a beautiful gown or glass slippers, I wished for something entirely different. I wanted her to wave her magic wand and give me the one thing my body couldn’t produce: an enzyme.
When I was little, my mother would stick her head and arms into the MRI machine and hold my hands to distract me from what was happening. While the machine hummed around us, she would tell me stories about faraway lands and transport me to magical worlds of her own making.
Looking back, I realize that my mother couldn’t wave a magic wand to make my Gaucher disease disappear. But she could do something even more magical: be a mom and make those scary moments a little less frightening. Perhaps I had a fairy-tale godmother after all — she just happened to be my mother.
Unlike Cinderella, my wish wasn’t particularly glamorous, especially for a little girl who loved princesses. However, so much of my childhood revolved around medical appointments and infusions. Sometimes the most extraordinary thing I could imagine was having an ordinary life.
As a child, I saw Cinderella as a beautiful princess who remained kind and courageous despite the mistreatment she had endured for years at the hands of her wicked stepfamily.
Now, as an adult, I see her differently. She wasn’t simply a beautiful princess waiting for her happy ending. She was an ordinary girl trying to make it through the hardest circumstances of her life without losing her kindness or hope that things could be better, which could be a metaphor for my own life.
The greatest lesson I learned from her was that being courageous doesn’t always mean being fearless.
Growing up with Gaucher disease, there were plenty of things that frightened me. Medical tests, hospital visits, and the uncertainty that accompanied them were all part of my childhood. These were the types of things that made an elusive monster in my closet or a bump in the night seem like child’s play.
But being brave never meant that I had to pretend like I wasn’t afraid. Sometimes it looked like knowing that I could face something I feared with as much courage as I could muster.
Unlike Cinderella, I knew that there was no midnight when everything would magically change. My medical appointments would still be there the next morning, and so would my Gaucher disease.
But perhaps what I loved most about Cinderella was never the magic itself. It was the possibility that life could still be beautiful, even when the circumstances surrounding it were anything but that.
Sure, my life has been filled with more hospital gowns than ball gowns, but there have still been moments of magic, just not always in the ways I had pictured them.
Sometimes, magic isn’t about having all of your wishes come true. It’s about discovering that life, even with a rare disease, can be beautiful when those wishes don’t come true. You just have to be brave enough to see it.
Note: Gaucher Disease 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 other 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 Gaucher Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Gaucher disease.
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