I belong to several groups on Facebook, and often run into "trouble" when I want to share about the things I have created. Even when I want to give away a free recording, it is often construed as "advertising," "marketing," spam and other things that business is labelled. If I want to link to my blog, it can have the same reaction.
When I post about my Cedonaah work, that is also considered business. Yes. I hope to sell the items and make money. The problem for me is that for me it isn't a "business." It is about "survival."
It is a problem because how does one distinguish themselves in a situation like mine? Most people who are in a situation like this might have someone else spearheading things for them, and it might be able to be OK under some other label. But it is easier to say "fundraiser" when it comes from someone other than the person needing the funds.
It also may seem to somehow take away from others who have businesses, too. Of course, for them, there is also a level of survival inherent in their getting business/sales.
I try to figure out a way to explain the difference between the two of us without offending anyone. In some ways, there really is no difference. In other ways, there is one big difference, and that is that I am only doing what I can at the moment, with the energy I have, while dealing with a major illness that doesn't allow me to function as someone who isn't dealing with one. This description, I also realize, fits the bill for others dealing with major illnesses and considerations.
This conversation is really messy. And I haven't figured out a way to un-mess it.
Labels can be helpful, but they can also mislead and misinform. Many times we think that those who wear a certain label must fit a certain mold, and often that isn't true. Many times there are gradations within the label that go unaccounted for.
Interestingly, a woman currently dealing with brain cancer is talking about ending her life. Some are calling her "brave," others are calling her a coward. In thinking about this, I have often questioned the use of "brave" when it comes to me. Am I really brave? Or am I just living my life?
I think I have come to the conclusion that brave really is a relative word, and that what it really means is that another is doing something that the person using the term perceives is in some way admirable, positive, desirable. There are some who call that woman brave for considering ending her life.
As much as we would like to be able to set things "straight" somehow by the use of a term, I am not sure that we can. And, maybe that is a good thing. Maybe it makes us have to be aware and awake in the things that we do and consider. We can't just label it, and put it in a drawer.
But...that is only as long as we don't just label it, and put in a drawer.
In thinking about which labels I could use that might help me and draw attention, I don't like any of them. I am not even going to say what they are, because I am not interested in being labelled that way.
Some may wonder what they are, and why not use them if it would seem to work? It is hard to explain without going into some detail about what they are. However, when you think about the cancer stories that you hear about, what words come to mind? Have you ever heard those words in relation to me? My guess is, probably not. Might they fit? Possibly.
It figures that I need to continue to be a rebel even as I deal with this situation. I don't seem to fit into the places that people want me to be, and I am reluctant to go to places that many might take pity on me, and potentially see things about my situation that aren't potentially helpful to me and my well-being mentally, physically or emotionally.
That woman who has spoken about killing herself is not much different in essence than others dealing with cancer of some sort, but she said something that brought attention to a cause that many find controversial, as a result she got attention.
There is nothing controversial about my desire to just live my life. If I hit a HOT button somehow in people, it might make a difference. Last year I was told that my story wasn't newsworthy. I was traveling cross country by myself, and had a message about life and living and a message about what those dealing with cancer are truly facing (and it is not quite what people often think), and because it wasn't about guns and murder or violence, there was no story to tell.
Oddly enough, perhaps, those who have since heard my story have thought it to be quite incredible. What does it say about our media and our relationship with our media that a story like "mine" couldn't/wouldn't be told? Only stories with the "sensational" words are the ones told. The ones in which people are devastated, dying, terminal, are leaving loved ones behind, and so on.
There is so much more to cancer than dying. I wonder if people will ever get that when there is so much that gets in the way of understanding that fact. And it is not that it just haphazardly gets in the way, it is intentional, as many don't want to hear anything about it.
Dealing with cancer is perceived as something negative, and as something to stay away from. The irony, of sorts, is that a greater understanding of what is faced could potentially change that perception and how we interact with it. But no one wants to go there because they just think it's just too scary to face.
Often that also means the people who deal with cancer are also too scary to face. I cannot tell you how much that feeling sucks. I sometimes wonder if I am tuned out to a greater degree - regardless of what I am saying or doing or creating - because "cancer" is speaking so loudly that nothing else can be heard.