Do you ever have those moments when the words roll off your tongue, and later you wish you had laryngitis? I had one of those moments yesterday. Truly, it was just a blip on the radar...but sometimes a blip is all you need to make you sit up and take notice!
The moment started when my father and I ran into one of my cousins, which of course is not the regret. I would never pass up the chance to see any of my relatives...and though there are many, I often don't see them for years at a time. Today's cousin was one of those long lost relatives, and it was a pleasure to see her! And as conversations go, it was a normal one..."How are you?...Are you still teaching?" she asked me. And I proceeded to explain that it has been a long time since I taught...that I recently had to retire because of my CMT...blah, blah, blah, yadda, yadda, yadda. In other words, open mouth, insert foot HERE. Don't get me wrong--I have no problem with anyone knowing these details. They are true after all. I've never had any problem with people knowing I have CMT, or what it is, or what changes I have gone through. It's the people who DON'T ask me any questions that bother me...if what they choose to do instead is stare, or point, or laugh.
Though honestly, it wasn't always this way. I struggled with years of embarrassment about the way I looked and walked, knowing the differences were growing more obvious everyday. It caused me to become very anxious in a lot of situations...the more people around me who would see these differences, the more nervous I would become. Walking through wide open spaces such as the mall (a normal teenage hangout to this day,) would seem as detrimental to my health as falling into a pit of sharp and pointy things! I knew I would barely have any wall space to hang onto, as I made my way from store to store...and hundreds of eyes would be there to watch my slow progress. It has been a long road, and I have left a lot of these anxieties behind. Well...some. Okay...I guess I should say I've learned how to deal with these anxious moments, and one thing that has helped me is having people ask me questions. That might seem strange to some, but that's the way it is for me. And so yesterday, after these numerous explanations flew out of my mouth, it wasn't my cousin knowing these things that I regretted. It was the fact that I didn't say ANYTHING about my paintings that are hanging in numerous galleries...and that I happen to coordinate an Art de Cure gallery, which benefits CMT. And I'm proud of those things. I've worked HARD to make those things happen. So I need to pull the woolly sock out of my mouth every so often, and get a GRIP!
Currently I am working on a children's book about CMT. There isn't much available in this venue to teach kids about this disease and raise awareness within the classrooms. Because children can have this disease or have friends who have it, and need to know that it doesn't have to define them. CMT is only one part--it does not make up the whole person. I was a child with this disease once upon a time...seems like I would have benefited from a book about this very thing, don't you think? So my next goal for the future is to answer those "How are you and what do you do" questions with "I am an artist, and I coordinate a gallery to raise money for CMT." And the other information can follow...because knowledge raises awareness. And with awareness comes power...and with power comes change. I hope to someday be part of that cycle of change for children with this disease, if for no other reason than to teach them that many things lie beyond the CMT...they only have to reach out and touch them.