Wednesday, October 22, 2014

Purge Before Sleep.

I am really tired, and should likely go to bed. But I wanted to write something, first, before it fades from my thoughts to share. I am also, by the way, noting the time as I begin to write this, 23:42.

I am having such an interesting time with numbers these days. I keep noticing the clock at "pattern" times: 555, 1234, 123, 1111, 1212 and other times like that. It has been happening for a while. On my trip last year, there was a point when my GPS said 555 miles to the next destination, and the next time it announced mileage, it was 444 miles to the destination.

I was told yesterday that it is likely "reassurance" that I am getting all of these patterns/repetitions.

At the moment, I am sitting here, wrapped by an ace bandage around my mid-section. It was recommended that I spread some particular oils there, and then wrap the area up. It tends to get quite toasty. Good thing the weather is cooling down. If it was summer, it would most assuredly suck.

What else?

Oh. I was just thinking earlier about how I don't really have much time, nor effort, to spare these days to want to put make-up on. I am getting used to a make-up free me. I don't know that that is the version of me that I prefer, but I am just so energy deficient for things like that. I am too busy using what energy I have to try to manage to survive. I mention it, though, because I am not really OK with it. A part of me is sad that it isn't more of a choice. Some might say it is a choice, but it would be difficult for me to agree - given my current situation and circumstances. It is about this time in things that I would pull out the make up and a wig and do a nice picture.

We'll see.

Ok. So. To the meat of what I had wanted to write about. Today, as I painted, I began to sob. It is the first time that has happened. I was painting something, and feeling very emotional at the same time. The more I painted, the more emotional I became until I was sobbing deeply. There was so much in the painting. It is difficult to describe without sharing it. And I am not sure I am ready to share it.

I am still hoping to have a show when these 40 days are up. I am contemplating continuing to paint every day, even after I have met the goal. I did not look at the art as "therapy," in the same way that I did not look at my trip last year as me trying to "find the meaning of life" or "find myself." I just LIVED. I just did what I felt was right. It wasn't easy, and the path wasn't clear, but I just made a step, and just kept going.

I have had no idea what would come out when I painted. NONE. If I got conscious about it, and tried to figure it out, I most assuredly would be paralyzed. But each day I just sit down and start to paint, and see what shows up along the way.

As I listened to the music today as I was painting, I felt that it was telling a story, and the strokes of my paintbrush and hand moved with the music, creating one of the most fascinating images that I have done so far.

If you know anyone who could help me have a show, or of any galleries I could talk to, please let me know. This is a thought I don't want to let go of. I should, at some point, see what I can do to have conversations, but right now I am too busy painting and creating jewelry. If you haven't seen what I have been up to, please check out Cedonaah's Facebook Page.

As you can tell, my head is all over the place. It is partly why I decided to write, despite needing to sleep. I am hoping this purging will help me rest better.

Sweet dreams when you get there.

Sunday, October 19, 2014

When is a Barn Not "Just" a Barn?

As you may know, I have been painting daily. It has been 21 days now. I am over the half-way mark now, as I wanted to do it for 40 days straight.

Today I painted a piece that included a barn. When I showed it to a couple of people, they interpreted it in ways that I had not envisioned.

I thought I was painting a barn.

Their reaction got me thinking. Any time we put ourselves out into the world we are exposing ourselves to others and their interpretations of us. Sometimes they might be right. Sometimes they might be wrong. Sometimes they may see something we don't see. Sometimes we will agree. Sometimes we won't.

I like when people get something out of my work for themselves. I am, quite frankly, not always sure when someone tells me about me through their interpretation of my work. While what these people thought today were "good" perspectives, it still feels a bit awkward.

It is hard to explain exactly what, and how, I feel. I imagine it is my sensitivity to being judged these days. There are times I feel a bit raw.

I really just thought I was painting a barn. There are times I tend to think something may "just" be what it appears to be, and not something else. There are times I have extra paint, and I use it, and happen to like the way it looks. Is it my unconscious speaking? Or is it just extra paint, and kind of a cool something that I have done with the paint brush?

At some point I was thinking about poetry class. In the poems, there often seem to be metaphors. Are there really metaphors, or are those analyzing the poetry putting a meaning into place that wasn't necessarily intended by the author? Was the meaning that they interpret like what is perceived about my work? Was it the author expressing from their unconscious? Whose interpretation of their unconscious is the "right" one?

I really don't know the answers to these questions. But what I do know is that I don't blame those who hold back from sharing their work one bit. It is not the easiest thing to share one's soul in any form. It can be quite intimidating, among many other things.

But there are trade-offs, and if you are "one of those" people, I can tell you - even with my questions and reservations - I much rather be on this side of things.

OVCA Awareness Month

Last month was an awareness month for Ovarian cancer. I had sought to bring awareness to others about the symptoms of this type of cancer that are often missed by doctors because they are common symptoms for other things.

I want to thank those who sought to help to get the word out. In the midst of everything that I was dealing with, I wasn't able to extend myself as much as I would have liked. Interestingly, I have mixed feelings about focusing on the symptoms, and talking about it. At the same time, it might just help a woman discover something earlier than I did.

I had seen something about ovarian cancer at one point, but it wasn't presented in a way that truly helped, and when I did talk to my doctors about things, it did not net any result until my symptoms got really bad. Even then it took a few months. I had hoped to present it in a different, more effective way.

But it isn't easy to do everything I have had to do. Yesterday someone told me that "cancer is a full time job." What I came to find out was that a relative was dealing with cancer. She apparently understood that a great deal of focus needs to go to managing what happens around the presence of cancer in one's life.

Many do not have a clue of what I deal with, despite the fact that I have tried repeatedly to discuss my issues. My life has been such a mess the last couple of years. There is no one that can pick up the slack in my life. There is no one who can take care of my bills, or make decisions for me, or make me meals, or wash my clothes, or clean up after me.

Most healthy people would love those things. When dealing with cancer, and the effects of treatment, there are times it is hard to even get out of bed, and hard to stay out of it once up. The mind can become mush, and the chemicals of treatment can alter the landscape of perspective. The effects of treatment linger even after treatment which become an "illness" unto itself.

So many have no idea of what living life with cancer is like. They know that it looks like sh*t, and they know that people die from it, but they don't seem to know much more than that. They also don't seem to want to know.

I know people compare themselves to me. Many of my issues seem to be their issues, and if they are having the issues that I am having, they see no difference. It is so very difficult to convey what I am dealing with without having to make things seem terrible, and who wants to do that?!

Even worse, when I have been at my worst, people talk about how I am so negative, and how I should be more positive, and how much better it would be if I handled things in a more positive way. How in the world can you convey a need and a situation without conveying a need and situation? Why are we so hooked into everything having to be so positive?

I really don't think it does us much good to shut ourselves down from feeling whatever is present. Last night I was talking to someone, and a misunderstanding resulted. The misunderstanding created a big flare up. I felt I was misunderstood, but the person had no interest in talking to me about the situation. The anger was blinding. He said he didn't want to talk about it, so I had to let it go.

In the past, I would have probably tried to push it. In the past, I would have handled things in a myriad of ways that would not have been helpful. But last night, in that moment I let it go.

Afterward, though, I found myself thinking about it, and the whole situation bothered me. I felt I needed to say something.  I stated I expected no response, but said what I was feeling in a text. The person surprised me and came back with an apology.

While I wish it hadn't happened in the first place, things do happen, and we do ourselves a disservice when we don't say how we really feel - even when there is a chance another may not like what we have to say. At the same time, if I had pushed in the moment, it would have not done any good, and may have even made things worse. I think we need to respect where another person is, and find a way for us to express ourselves, as holding back can be to our own cost and detriment.

Voices.

I just saw something that was shared by another. She was sharing about time spent with her family. She seemed to have an issue with herself about cutting the visit short, but realized that what time she spent was valuable.

For many who responded, the reaction was positive. I had a thought that probably is different than what many would think of. I think there are times we can justify the behaviors we may think are lacking by making them seem to be good. Perhaps she should have spent more time, but since she didn't, she made herself feel better by looking at it how she did.

This is not to say that is what happened, though, or even to judge her for her actions. Rather, it just makes me think about how often we have the ability to justify pretty much anything. What if she went where she went, but she really should have stayed with her family?

The only one who is going to know the answer to that question is her. The only one that truly knows what is best to be done in any given moment is the person his or herself. It takes a matter of really listening, and trusting and knowing that feeling that is guiding us where we "should" go. It is the only "should" I think worth listening to.

The thing about it, though, is that I think when we do what feels like the right thing to do, is that there is a sense of peace that comes along with it. If there isn't peace, then it is possible that what we are doing isn't what should be done, or the voices of others make us question ourselves and our decisions.

Whose voices do you hear? Often when you know it's right, you know it's right. I just think it is important to occasionally look at the things we do to make ourselves feel better. Someone reading her story might feel it gives them permission to do something that might not even be the right thing for themselves. It also might give justification for an argument about what another in their life is doing or not doing.

How often do we truly listen to what is best for us? I think it can be rare, as repercussions can be problematic. For me, since dealing with cancer, I would rather listen to that inner voice than not. It makes me so much easier to live with. There is a lot more silence, and a lot less questioning and judging and confusion in my head than when what others thought bounced around my head as much as it used to.

Oddly, perhaps, the repercussions aren't as bad as not being true to myself. But - make no mistake - there are still times it just sucks.

Friday, October 17, 2014

Life.

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.






Monday, August 25, 2014

ovarian cancer awareness images



   


If you would like to use any of these images on your Facebook profile, please feel free to do so, but use them intact/as is. You can find them on my Facebook page Facebook.com/JoLoPe, or you can click any of them here for a larger size to save to your own computer and then post.

If I am inspired to create more, I will post them here, as well.

Thanks for your support. I hope you - and no one you know - ever has to personally meet ovarian cancer. But, if they do, it is my desire they be more prepared than I was









Sunday, August 24, 2014

I knew I was "Special"

I have always known how unique I am.

For a long time, it was a big problem. I never felt like I fit in. I never wore the right clothes. Never did the right things. Just never was like anyone else, especially the "Popular" kids.

Somewhere along the line I realized that it was OK to be different, except that I didn't necessarily want to let anyone know how, so I stifled my voice.

These couple of factors are interesting, given my current situation and state.

"Only" approximately 22,000 women are expected to be diagnosed with ovarian cancer this year. Compared to the population of women, compared to breast cancer, compared to a lot of things, that number certainly stands out. And it also makes me stand out to, by being included in it.

Of course if I was going to have to deal with a diagnosis of cancer, it would have to be one that was in the more unique range. Of course.

My mind has been going the last couple of nights, trying to figure out what I can do to utilize the fact that September is a month of "awareness" for this illness I am all too familiar with now. This part is an interesting piece, given that it is causing me to speak out in ways that would have been unfathomable only a few short years ago. There are many things I think I can do, but there is one piece that I am going to have difficulty with, and that is the one that has to do with statistics.

If I was on the outside looking in, or if I was years away from a diagnosis, it would be a lot easier looking at statistics. The problem is, I am neither. Occasionally I will stumble into some looking for something else, and it does me no good.

The fact is that ovarian cancer is one of the Top 3 cancers responsible for the death of women.

The fact is that it often goes undetected and misdiagnosed for way too long, which leads to later stage diagnosis, and in some cases a quick death.

The fact is that many women who have symptoms wind up going to the doctor repeatedly with symptoms that aren't treated, or are treated as something else.

The fact is that many doctors will likely never see a case of ovarian cancer in their practice, and therefore would be unlikely to recognize one if it showed up.

The fact is that most women when asked have no clue what the symptoms are. And men?

The fact is that many (including doctors) treat it like it's an "older" woman's disease. It just so happens that (if I remember correctly) approximately 50% of cases are women who are in their 60s. But that still leaves a range of women who don't fit that stereotype. In fact, it can be an illness much more detrimental to a younger woman because it isn't something readily considered.

There are other facts. I am not sure I want to know any others, and for that you will have to forgive me. I think I know all I really need to know at the moment because...

The fact is...

I am one of those special and unique women who makes up those statistics.

Another fact?

I am hoping that I can help others to be more informed so that if they become a statistic, it is one of the earlier stages, and they can find themselves getting what they need much sooner than if they had no clue what was going on, or what to ask the doctor for to take care of themselves.

I would love it if you would help me get the word out in September, or any time. Please visit http://ovcasymptoms.com for more info on how you can do that.

Thanks. And thanks on behalf of those you might just help.