I don’t mind when you ask about my condition…when you ask politely. A lot of people ask, “Are you hurt?” …or something to that extent. I appreciate their concern, and in a lot of ways it has been nice. I can educated people about CMT, and I’ve made lots of friends by talking to people about it. In some cases, I have even been able to help someone else who was in pain too. That feels great.
I’ve tried very hard to deal with this gracefully. It has prevented me from doing some things I want to do and I try not to be disappointed. I try to be thankful for what I have and be thankful for the opportunities that I’ve been given because of this disease, but I can’t be one of those inspiring people who always sees the silver lining and is gracious, kind, and turns the other cheek when people are jerks to them. For whatever reason, God gave me a sense of humor that disables me from sugar coating sucky situations. Sorry, I can’t say everything is perfect. Don’t get that confused with being negative. I feel like there aren’t enough “self help” or testimonial books/stories/articles that address things with blunt honesty. I feel like a lot of these works are a lot of rainbows and butterflies, and somehow it doesn’t always ring true. On the other hand, I feel like we don’t need any more negativity in the world. I do think that telling it like it is isn’t negative. The fact that I am still happy with my life is proof that I am positive. I just don’t see the point in telling everyone this lovely story that is really a hollow facade. This is how I deal with things. I am sensitive and I use my sarcasm and blunt sense of humor to deal with my frustrations, complications, insecurities, and disappointments. I want to be kind to people, but I am not one of those people who can smile while being insulted.
Back to my original topic…(I had to deal with this today).
I DO mind, when you ask me at the top of your voice, in a lobby full of people, why I am limping, and when I try to explain to you that I was born this way, you go into this long lecture about how I am not taking care of myself properly and that MUST be why I am limping. Excuse me? I find you egotistical and presumptuous. You don’t even know the situation. I’d be willing to tell you, but you don’t care about the answer anyway. You just want an outlet for your great knowledge to enlighten us pee-ons. You don’t even care if it is beneficial to the recipient.
First of all, it bugs the crap out of me when healthy people lecture me about living with a disease. Do you even have a clue? It is like naturally skinny people giving diet tips. You don’t see an overweight person and go up to them and say, “You’re fat! You need to eat a salad!” You just don’t do that, right? OK, then why is it okay for you to do to someone who has a disability? It’s one thing when I am talking to someone, and they relate, or they have a bit of advice and they share it humbly. Please! Give me advice! Just don’t be a jackass about it. Please.
Secondly, you NEED to be humble when asking me a question. Don’t have the answer already in your head. Ask me with an empty cup (so to speak). It is so rude to act like you know it all and you know exactly what it feels like to be me before you’ve even taken the time to hear my story. It is arrogant, and rude, and selfish, and I am not going to pretend to be polite while knowing that you treat people this way.
Thirdly, I don’t think that any young woman wants to be noticed for a physical flaw. We all want to be captivating, and when you point out the flaws in our beauty in your loud-as-hell-arrogant-jerkface voice, it throws off our groove. Be courteous, be respectful. Put yourself in my shoes. Now, I am used to people asking because pretty much everyone does (I don’t blame them either. I’d be curious too.), and I usually like telling people about it. I like teaching them about what it is like. However, you have to understand that I don’t always want to talk about it. Sometimes, I don’t want to be noticed at all. Just think about that before you unwittingly blabber out to the entire world that I am limping.
The Limping Mutant