I keep wondering how I can convey what is going on with me. I keep getting the feeling like people just don't "get it." I think because people think that because chemo is over, everything is OK. It is back to mid-range, normal.
It is not.
I hate to talk about this, but not as much as I hate that it is a reality I must contend with. So if I hate to talk about it, why do I? Because I keep thinking that there needs to be education. People need to become aware. They need to realize that just because they want things to be normal, they are not. One day someone said to me, "something, something, something and then you can get on with your life."
What if there is no life to get onto? Why do people think that trying to tell me what reality is helps me? Do they not think I see my reality?
People say you should ask for what you want. I get it. But sometimes it is very difficult to know what that is. It would almost be better if someone said, "I can do this for you. Does that help?" I suspect someone may know better what they're capable of offering better than I sometimes know what to tell them I need. At the same time, I realize that it is possible if I asked for something more than a person thought possible, maybe they would see if they could find a way to help.
It is not that I want to push it off on someone else, but at the same time, until I do know what I want, it is about all I can do. Not to mention the fact that I am overwhelmed by even the simplest of things these days. It would be an incredible relief in some ways if someone could come along and make me offers that I could take, or not.
I realize how "regal" that must sound. I suppose that is unavoidable. But the thing is, I am in a world right now that many people just do not understand and I am often having to second guess myself and/or feel like I have to defend myself. I don't like either. I really wish I had enough of my own money and support that I could just go off somewhere and deal with everything by myself. It hurts so much to have to deal with the things I have to deal with and then have to explain to others why I am not the same as they think.
It is a double whammy that really sucks.
Yesterday Ken Newman posted a profound status on Facebook. I read it on my show yesterday, and am going to share it here. I'll just do it in a blog entry. What it speaks to in some ways is what I am communicating here. He met someone who has huge needs, and while talking he thought of a way that he could help the guy - and then offered what he had to give.
It is as beautiful as it is simply profound. If you have the time, read it. Maybe in some way it can explain a bit to you what I am trying to. And even if it doesn't, it still is a worthy read.