How Gaucher disease has helped me become a better problem solver
Like the show 'Friends,' I've become an expert in the art of pivoting
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In January 2025, I was scrolling through Instagram, trying to distract myself from the cold and the fact that I still couldn’t walk well on my leg, when I came across an influencer who had decided on a whim to fly to Paris with her friends. My first thought wasn’t, “That must be nice.” It was, “If she can do it, why not me?”
I don’t think my brain solves problems the same way most people do. Living with Gaucher disease type 3 made sure of that. Growing up with a rare disease taught me at a young age that if Plan A doesn’t work out, I always need to have Plans B, C, and D. So I’ve always had a knack for finding quick solutions to problems that most people would agonize over for hours.
Having Gaucher disease is about so much more than lacking an enzyme. My body often changes my plans without permission. One day, I may wake up simply tired, while other days I may be going about my business and then fracture a bone.
There is a famous line from the show “Friends” that you may have heard or seen a meme version of. In the scene, two people are carrying a couch up a set of stairs while moving, and one of the characters keeps telling the other to “pivot.” That line has become the anthem of my life.
What happens when you wake up feeling fine and the next moment you’ve broken a bone? Or you get hit with a ton of work and then can barely move the next day? I had to learn how to adapt, how to pivot.
That January, after spending most of the previous year recovering from a broken leg, I was tired of seeing the same four walls. Even though I still couldn’t walk very well, I decided on a whim to look for flights to Paris. My logic: If I’m going to be cold, I might as well be cold in Paris.
I found cheap tickets and immediately texted a friend to ask if she wanted to go to Paris with me. She agreed to help me, and we went. The moral of the story is: Get friends who also have wanderlust and are willing to help you move around.
Now, unlike that perfectly able-bodied influencer, I needed to figure a few things out. To start with, was the hotel where we planned to stay wheelchair-accessible? How about public transportation? In a perfect world, I could just pick up and leave, but for me, spontaneity has never meant unplanned.
What I’m getting at is this: Whether you have a rare disease or not, life will throw things at you. My ability to pivot is one of my greatest strengths. In fact, consider my current situation. After recently breaking my arm, life apparently decided I needed to practice what I preach. As I’ve had to do many times, I learned how to type with one hand.
No one knows what tomorrow may bring. Everything you do doesn’t have to be big or extraordinary, but you can’t let the fear of “What if?” stop you from truly living, or at least trying.
If living with Gaucher disease has taught me anything, it’s to stop asking whether something is possible and start asking how I can make it possible.
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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