IT’S BE BRAVE FRIDAY WHERE SHAUN OR I (FROM DOGS ARE SMARTER THAN PEOPLE AND LOVING THE STRANGE AND JUST BEING AN AUTHOR IN MAINE) SHARE PEOPLE’S UNEDITED, UNFILTERED STORIES, SO WE CAN ALL CELEBRATE THE BIG AND LITTLE BRAVE THINGS WE DO ALL THE TIME.
This Be Brave Friday story is from the wonderful and brave and cool and talented Lenka Vodicka who writes the Forest Fairy Craft books, which you should check out!
I was a mellow baby that slept a lot. Then I was a clumsy child that fell a lot. Then I was diagnosed with a genetic disease called Charcot (pronounced shar-co) Marie Tooth (CMT) which has nothing to do with teeth. It’s named after the three doctors that discovered it. CMT is also called hereditary neuropathy. CMT is a glitch in the genetic code that causes nerve damage, muscle weakness, balance issues, and fatigue. It’s degenerative, meaning it worsens over time. There is no treatment, other than bracing and corrective surgery that may or may not work. And there is no cure. I have CMT for life.
CMT symptoms can vary widely, even within a family. Some people have mild symptoms that are barely noticeable into their 80s, while others have multiple surgeries and use wheelchairs as children. My case was in the mild category for a long time. I couldn’t wear flip-flops, or scramble up rock climbing walls, but most people had no idea that I dealt with any disease at all. I could be normal. My challenges were usually invisible. Situations like mine, where challenges are not easily seen, may be called invisible disabilities.
Then, one day, that changed too. My feet hurt. Every day. Every hour of the day. Every minute of the hour. They ached like someone dropped a book on them. And they didn’t stop hurting. Fingers went numb. I never considered myself disabled before. The word was serious and full of baggage from sad movies. Facing the reality of my situation required a leap of bravery in itself. I wanted to run towards “normal” as fast as possible. Slowing down, facing my limits, and then asking, “How can I help myself? How can I make my life easier in this moment?” was big work.
I changed jobs and got a disabled placard for my car. Then the real bravery began. Because having an invisible disability means that every single time I ask for accommodations, I have to call on my inner brave self. Because my bravery is the opposite of heroes that step up to a moment of decisive action. It’s the opposite of heroines volunteering for a mighty quest. It’s the opposite of saying, “I think I can, I think I can. I believe in myself.”
My bravery is “No.” My bravery is approaching random staff person at a concert or event to ask if there is an alternative line or somewhere to sit that doesn’t involve steep stairs. Sometimes the information is online, but that doesn’t always translate to the location. And I’ve even had staff say, “I don’t know why the website says that.”
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