Friday, October 17, 2014


I have been itching to write here for a while. The thing is, I am not sure what I am supposed to write, exactly.

A part of me feels "written" out. I stopped writing here, and decided to write a book Sometimes It Sucks to be Human. I knew that I couldn't continue to do both at the same time. But then the book was finished, and I wasn't sure what would be next.

I have been posting thoughts on Facebook that probably should have been posted here. But they weren't, so maybe I am wrong about that. If they should have been here, perhaps they would have been.

Part of the "problem" I face at the moment is exhaustion. I am exhausted by having to request help. I am exhausted by having to interact with what others direct at me, in my own best interest. I am exhausted just trying to live.

As I write that last part, I am certain there would be those who would take that statement as a negative. The fact is that I am enjoying what I am doing. I am just exhausted doing it. All of my energies are being used. Every last part of me is engaged, and I am wondering what else there is to say that hasn't been said. Quite frankly, there is a part of me that is tired of repeating myself.

If I could go off and just live away from the online world, I would. The fact is, in some part, I have been doing that. But another fact is that I still freaking need help. A part of me doesn't want to say "freaking," but there is another part that is annoyed and frustrated by that fact. I want everything to just be OK. Me. And probably everyone else, too.

Recently I said to someone there are times I feel - however inaccurate it likely is - that there are people who want me to get better, die already, or shut up. I know that is extreme, but I am guessing there is some percentage of people that likely fits, but it probably isn't a very large contingent.

Dealing with cancer is no fun for anyone on any level. No one really does want to hear about it. I was recently visiting a friend, and one of her family members had no interest in speaking with me, much less even meeting me. He went out of his way to stay away. The reason? Bloody cancer.

My friend had invited him to come and get to know me. She told him, and other members of her family that I don't talk about cancer. I talk about other things. They were concerned that I was bad news for her, given my situation.

This bias exhausts me, too. I was so uncomfortable at times. I could just feel that person's discomfort. I tried not to think about it, but when it was in my face, it was difficult.

A lot has happened in my life since I was posting here regularly. Most recently, I have been using my creative energies to make jewelry and to paint. I have been painting for approximately 18 or 19 days straight now. I intend to keep going, at a minimum, for 40 days. I have been contemplating going even longer, but I do not want it to become a chore. Right now the challenge excites me.

Right now I am loving the fact that I am doing something I never imagined, or thought I could do. I never claimed myself as an artist. I may have used the word as an identifier, but I never really CLAIMED it. Having several works of art at this point have told me that I need to claim that piece of myself. And I have done just that.

It felt a bit weird. But it felt weirder using a label I hadn't fully claimed.

I just went back and re-read what I wrote. When most people see me at a distance, my guess is all they get is "cancer." A person wrote me about how negative I seemed to be. I went back through my posts, and while there was stuff that I was dealing with, there was other stuff, too. Facebook's algorithms seemed to have that person only see the stuff that wasn't so great. (I think there was even news to the effect that Facebook was intentionally doing that?) But the thing is, writing about anything to do with cancer and a need seems to be inherently perceived as negative by some others.

While I wouldn't say it was positive, I wouldn't necessarily say it was negative. A person even told me how amazing it was to her in some way that I write about much of what I have gone through, but do not sound like a victim. I just say how it is. Somehow we seem to have some difficulty with hearing how things are if they are not things we want to deal with, or are pleasant to hear about. We have intertwined the two to make a meaning that isn't conducive for people to say how they really feel.

We have a world that wants us to "stuff it."

Is it an absolute? Nope. But it is something that is present in many things that makes us uncomfortable: mental illness, suicide, death, cancer, other illnesses/disabilities, sexuality, autism, racism and so much more. There are countless times I have heard from people who are dealing with things say how the stuff they are dealing with isn't addressed by those outside of whatever it is.

It is all too easy to be in a bubble. It is all too easy to say, "I just don't want to deal with that, so I won't." The luxury of the ability of being able to say that statement can go away in a heartbeat. The minute you find yourself in the midst of that thing you didn't want to deal with when it was someone else's problem, is the minute you are likely shell-shocked by the reaction or lack of reaction/action of others. It is the minute you find yourself on the receiving end of an unhelpful bias. It is the minute you find yourself hearing all kinds of platitudes from those who don't know what to say, probably don't really want to say anything, but feel they need to say something.

You come to realize that all you really need is for people to stop seeing you as a label, and all you really want is for them to interact with you as a fellow human being. Your "thing" is a part of your life now, but it isn't you. The disconnect at times like these is like a huge canyon.

I have had people tell me "f-them," when it comes to those who don't understand and/or don't help. My response at times like those is to tell them I'd like to. The problem is, I can't live and survive in isolation. I need help. I need others to have some compassion and understanding. I need them much more than I ever wanted to need anyone.

I have been told that it is better to come from a place of strength than a place of need. The whole need thing is unflattering and unpretty, and uncomfortable. It is no wonder no one likes the whole idea of "need." It is one of those things we're trained to think is bad, and therefore when we see others being that way, we tell them what's wrong with them, and try to tell them what is "better."

Throughout all of this I have been determined to be myself. It isn't always pretty. It isn't always nice. It often sucks. But I am who I am, and I just keep going. Along the way I find people who not only accept me for who and how I am, but they are supportive of all of what I am going through and dealing with. They are the ones who will say something like, "Your dealing with cancer, how are you supposed to sound?" when they hear how others are reacting to me. They react to the person I am, and not the online persona that may or may not be accurate. They take the time to know who I am and how I am and let me be myself.

I recently broke down. It came out of no where. I had had a conversation with a friend, and when I was finished, I felt triggered, but I did not know why. In speaking with another about it, I said I felt it was an accumulation of things. I started to list all of the things that had been affecting/bothering me, and that person said, "No wonder. It's a lot to deal with."

I may come off strong at times, too, because of how I address/don't address things. But what I am dealing with is very difficult from the inside. It isn't always easy to convey what I am feeling, or why I am feeling it. And then when I attempt it, I sometimes find myself on the receiving end of things that aren't as helpful as people think they wanted them to be for me. Being as public and open as I have been has me occasionally being broad-sided by someone who somehow thinks they know better how to do my life.

I have had people who have never dealt with cancer telling me how to be as well as those who have dealt with it. One might say those who have dealt with it know best what "THE" answers are, but they are not me, and they are not necessarily dealing with the same issues that I am. And their answers are not necessarily my answers.

We have difficulties interacting with people who somehow think they know something when they really don't have a clue and also with those who somehow think they know something because they have been there, and somehow think they really know something, and are an authority on the matter.

I am saying all of these things, and am wondering how I am sounding. As you are reading, I am wondering if you can identify with the things I am talking about. I am wondering if you are thinking about those things in your life that others don't really understand, but think they do. I am wondering if the things I am saying are things that you are finding helpful or if you are sitting back and judging me.

I am wondering all of these things, but I won't spend a lot of energy on it. I think that is partly why I needed to write, and partly why I do write. It gets things out of me. It helps me to get onto other things and move forward.

I feel like I have been running for days. A part of me is thinking I might just go back to sleep. I slept until nearly ten this morning, but I wouldn't mind some more rest. And maybe it wouldn't be a bad thing to just hang out in bed a bit. I have been in bed so much the last couple of years, the idea and charm of just hanging out because I want to, like I used to do on a Saturday or Sunday, when I worked in a 9-5 job, has long since been lost in my need to be there as much as I have. I have been so busy lately, I think I have regained the appreciation of the ability to make that choice.

I was told yesterday that I don't have a deadline. The person was picking up on how driven I have felt. At first I agreed. But then I said, "I kinda do." In a few weeks I am going to have to contend with the doctors. I also need money. I need something to click financially so that I can be OK. I am doing what I can to try to take care of it myself, and haven't been asking much for support. But refraining has its own stress attached to it - especially when nothing else has clicked yet.

"Trust" is a word I hear entirely too often. I get it. But at the same time, I also get all of the conversations and logic of those things we often hear that are "supposed" to be right and helpful. A few years ago I started to create my Cedonaah images. At the time I had stresses financially, too. I didn't know why I was doing what I was doing, but I just felt it was what I needed to do, and I was spending a great deal of time and effort doing it.

A friend of mine tried to tell me that "Artists don't make any money." In other words, I wasn't spending my time in an effective way. The fact was at the time I had no idea what else to do. I wasn't doing what I was doing in place of something else. It was the only thing I knew to do.

When I look back on that beginning, and what has happened since, I see how it laid the groundwork for what has come since. The work then became a catalog of images that could be used in the myriad of media I work in now. It also may be what somehow influences the painting I do, as I "painted" in Photoshop before, and it may also be work that can be incorporated into the jewelry I wind up creating.

Has it answered my financial issues? Nope. Not yet. "Yet." I have to hope that somewhere in the midst of all of the stuff I am dealing with, something clicks at some point. But there is a part of me that is also terrified. What if I only die trying to make something work?

Dealing with cancer can be like dealing with an obsessive partner. It often is difficult to focus on anything else. It can become all too consuming. I don't want it to get the best of me; it doesn't deserve it. At the same time, it has at times, sucked the life out of me.

Relationships with other humans we can choose to leave. But there is no way to leave this relationship, as long as cancer still makes itself known. There are times there is just no getting around it. I am having to find my way through this trying my best not to go places I don't want to go, while simultaneously dancing with the unavoidable road detours and blocks. There are times we really have no choice but to deal with what is in front of us.

That - at times - is the good and the bad news.

It is also LIFE.

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