Wednesday, December 10, 2014

and...yes...I know Cindy Carter

This morning I was talking with someone about how things are. I was talking about how so many think ETSY is THE answer to my problems. Almost immediately when someone who likes my work, they ask if I am on Etsy. It has become something like when those who know Cindy Carter of the Cancer Support Foundation. The minute someone hears I am dealing with cancer, they ask me if I know Cindy. They figure Cindy can help. When I was going to networking meetings locally I even got in the habit of ending my introduction with, "and, yes, I know Cindy Carter."


I have spoken with Cindy, many times. Unfortunately, she can't really help me, other than to be a way for people to donate to me in a tax-deductible manner. As far as Etsy goes, it takes time and energy and management. For those I have said this to, they act like I am not doing all I can to help myself.

What many do not understand is just how involved something can be that looks relatively simple. What they also do not understand is just how little time and energy I have these days, and that every moment spent dealing with that stuff takes me away from doing other things that might be beneficial.

The person I spoke with earlier quite negatively was "kind" enough to point out that what I have been doing has pretty much netted a whole bunch of not a lot. He then said something about Einstein's (?) quote about doing the same things, and expecting a different result. I pointed out that that wasn't fair, nor accurate.

I have tried to do MANY different things. MANY. I am at no loss for ideas of things to do. The difficulty lies in getting them done. So many offer ideas. I really don't need ideas. I need HELP.

Several years ago someone wanted to help me. I told him what I needed. He turned around and started asking questions that had nothing to do with what I was asking for. Sadly, that was not helpful, given where I was.

While I recognize that things are not absolutes, and that one thing is not always a predictor of another, I have tried to put things on sites like Etsy before, and have gotten no where fast after spending a whole lot of time setting things up. If I really thought Etsy would help, I would spend the time. Maybe at some point I will feel differently, but right now I just don't think it is a valuable energy choice to make.

It is really hard when people make judgments of my choices, or worse, of me. There have been several statements made to me lately about how many things take energy, and how I have to spend energy to get results.

I have NEVER been someone to sit around and do nothing. I have zero problems with investing myself. My body of work, I would think, has to speak to that. They are no small investments of me or my energy. Where I have "problems" is when others think that that one thing that I am not doing, that they think will help, becomes more about a judgment about me than about any potential issues surrounding it. Many things are not as simple as they superficially seem. Many things are just not that cut and dry. Not all things are for all people.

As I write this, it occurs to me that this applies to more than just how I need to do what I can to help myself fiscally, but also when it comes to those things people think will help me physically.

When things like this morning happen, especially on top of other recent incidences of similar reactions, it makes me want to just shut up, smile and say thank you and just leave it alone. It is frustrating and annoying, because I not only have to contend with the things that come my way, but the reverberations of my reaction, or lack of, to them. It often becomes a double whammy.

Some might wonder why I even bother to explain. I have thought about that, and what I have come to is that it somehow, at least at times, feels important to try to give the perspective. Another piece is that if you don't do what a person offers than it seems like you don't appreciate their attempt to be helpful. It seems like you might be rude or like you could be ignoring them. I think there are times I explain just so they don't think that of me. There are times I think I explain because I don't want them to think I am lazy or am not trying to help myself.

I often feel like I am on the defensive. As I have said many times, I do not blame those who say nothing about themselves or their circumstances when dealing with cancer. It really seems at times that it would be much better to be silent. And if I could be, I would be. But is hard to say you need help and then appear to be ignoring suggestions made.

I know people are just trying to be helpful, and I am grateful that people care. But what I wish people realized more was just how much the way we often care is more about us and isn't really helpful to those who need the help.

Recently someone trying to be helpful sought out links to show me where I might be able to get help. It was after a frustrating conversation in which I explained a lot of what I have been dealing with. I tried to keep an open mind. Maybe something changed since the last time someone sent links, or I last looked. Unfortunately, it was pretty much the same stuff as always, and therefore, unhelpful.

You might think how ungrateful I must be to talk about it this way. The thing is, it is extraordinarily difficult to explain what something like that is. It often takes time and leads to a dead-end. Given how much need I have, it is difficult to essentially be sent on wild goose chases. No one does it intentionally, but it often takes something from me I don't always have.

I have to be really careful how I spend my time these days. There are some days I can barely make it out of bed. I realize that for most healthy people what I describe sounds "normal." I wish it was. It is more extraordinary than that. It is something that transcends most people's ability to understand. There are so many times I feel like I am making excuses for stuff, but they really are valid reasons and considerations that only seem like excuses because they don't fit what someone else thinks I should be able to do, or should be doing.

I sometimes think that as limited as my world has become, it is that way, in part, for a reason. It takes a lot of energy to explain something I really wish was not my reality.

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