Dogs Are Smarter Than People: Writing Life, Marriage and Motivation
Invisible Disability Requires A Different Kind of Bravery for One Author
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.
SOMETIMES WE DON’T EVEN REALIZE WE’RE BEING BRAVE.
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!
Here’s Lenka’s story.
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.”
And because my disability is invisible, not apparent on first glance, I never know how they will react. Some staff say they have no idea. They need to radio another person that’s not answering the walkie-talkie. Or I give a museum feedback that more benches would be great, to hear, “Well, we want people to keep moving.” Trust me, I’d love to keep moving. I’ve heard many times that, “if we accommodate you, then everyone would want that too.” Again, trust me, they don’t want CMT. I’ve had a few meltdowns when a staff member insists that everyone must follow the same rules. I’ve missed events and left venues because the walk or the line wasn’t worth the pain that I would manage for days afterwards.
So why be brave? Why bother standing up to the hassle of disrupting the day for my friends, and the potentially embarrassing conversation, for nothing? Because, other times, bravery makes all the difference. Amusement parks became fun again. My niece said, “We need to come with auntie every time,” because we could stand to the side and enter though the exit instead of standing in winding lines for hours. I got to sit at concerts on a balcony where I could actually see the show instead of sitting in a sea of dancers. I’ve been able to drive to locations accessible only by trail unless you required disabled access. We avoid crowds and steep stairs. We park closer to the entrances or exits.
Asking for support makes adventures attainable again.
Bravery can be saying, “not today, thank you.” Bravery can be found in little moments. In the decision to tell your friends that the hike is too steep. In researching accessibility options before booking a room or campsite. In holding your deep truth. And asking for what you need. Bravery is accepting your limits, then finding ways to help yourself thrive. Now, I am a unique mom that loves adventures. And I look forward to many, many more.
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Hey! We’re all about inspiring each other to be weird, to be ourselves and to be brave and we’re starting to collect stories about each other’s bravery. Those brave moments can be HUGE or small, but we want you to share them with us so we can share them with the world. You can be anonymous if you aren’t brave enough to use your name. It’s totally chill.
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Brought to you by Carrie Jones and Shaun Farrar of Dogs Are Smarter Than People: Writing Life, Marriage and Motivation