The Misconception Is ...

I would love to be able to tell everyone that asks me that I have Carpal Tunnel Syndrome. I would love to be able to say "Yes, why I did break my arm. I fell off my bike." I would thoroughly enjoy saying to people "No, it doesn't hurt."

Kienböck's disease is not something you talk lightly about in small talk. I get sick and tired of every single person at stores who question me, and then proceed to make absolutely no effort to assist me. I mean, put the damn detergent in my cart already! It's a long and difficult disease to discuss and I don't want, nor do I have time, to stand here and discuss this with you. It's a lot like someone's cancer journey. I say this not to belittle cancer, but to compare the length of conversation regarding condition. I mean, you don't just walk up to someone wearing a pink ribbon (in example) and say "How's your breast cancer going?" Or even "You have breast cancer?" It's a history, a drawn out story of obstacles, choices, setbacks and accomplishments. It's similar for Kienböck's disease in that respect.

Look, I would LOVE to educate the public on my rare disease. It does affect people, albeit a VERY SMALL PERCENTAGE of the population. But, we're still people. We still have lives, jobs, families, livelihoods, etc. Even though there are probably less than 200,000 of us in the US alone, and it's very likely that almost none of us will ever meet another person in person who has our disease, we are still people. We still matter. Our disease does count.

The problem I have, however, is this: It's not something simple like asking about the weather. If someone is in a leg cast and they're waiting in line in front of me, I just assume they have an injury and leave them the hell alone. Not my business if they fell off a boat, down the stairs, off a skateboard, or anything. I just think to myself that they're leg is injured, and move on. I don't strike up a conversation and say "Hey, that's a bright pink cast you have there." It's like waking up and seeing that the sky is blue and the grass is green. It just is, accept it, and move on.

It's exasperating to have to explain to every single person who asks. Why? A) They don't know you, and likely don't really care. B) Everyone else asks the SAME QUESTIONS. C) It's none of your business. D) I don't know them or feel comfortable telling them I live with a dead bone in my arm in excruciating pain. That's medical knowledge between me, my doctor and my family. I don't like thinking of it constantly, or being reminded regularly.

The misconception of having Kienböck's disease is that it's something people want to talk about. Just because you have a cast on, you want to tell your story - or something weird like that. Well, it's NOT CURABLE, SO NO, I DON'T WANT TO TALK ABOUT IT. I get sick to death of talking about it.

So, next time you're standing in line at the grocery store, or you're interacting with people at work, or you meet someone somewhere that has a cast or a splint or a brace.... they're a human being. They're not a robot question station. They know you from diddly squat and would like to be left in peace. Let them just live their life and go on their way.

It's Funny When People Don't Care

It's funny when people don't care to keep listening, to keep reading, to keep asking. At work today, I realized that after telling a co-worker I had a bionic arm (that no, I cannot karate chop people with), his lack of questioning me and my scar was hilarious.

I normally wear sleeves to cover up my scar. Mostly from UV rays, but also because people used to stare. Rudely I might add. My husband's former soldiers in the military would just sit there and stare, and then he'd say something like "You looking at my wife's arm? Yeah, she committed suicide." They would become incredibly embarrassed by this. This last year, I haven't worn a sleeve to cover up my scar. Mostly because the nature of my work doesn't afford the opportunity of gawking.

So today, when he questioned nothing about me, my life, or my disease, I found it hilarious. Why do we place so much value on what people are hindered by? We shouldn't. People can't help a lot of things. In fact, there's very little that people can control. You were born into a family, a country, a culture, a religion and environment that you had no say over. It's ironic that we think these things matter so much when in fact, they matter not because the luck of the draw could have been ANYONE.

To him, it didn't matter that I have a bone disease. I wish I could be more like this and not care, but when it affects everything you do in your physical interactions on a daily basis, it's hard not to consider it something to care about. True, if he had asked questions I would have acquiesced and answered him. I'm not a person to shy away from questions no matter how difficult they may be unless I feel lines are crossed.

It really is funny that there are those rare people in the world that don't care where you've been or what you've done - because I have only ever met one honest-to-goodness person like this. It's funny that they are so hard to find. I'd love to find more of them. Judgement reserved, accepting people. I need real humanity, friendship and acceptance. I need people to stop rushing how long it takes me to do things, to stop commenting on the shortcuts I take, to let me have my chance to do it myself, and so on.

I might own my disease. But I don't want to be judged or labeled by it.