Thursday, October 30, 2014

There is so much more to cancer than dying

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.

Monday, October 27, 2014

Art as Therapy?

Today has been a rough day. I am exhausted. I am not sure why, other than perhaps the emotions I am feeling. I was sobbing earlier today.

I am trying to do so many things. The advice most give me when I express that fact is simply "not to." I wish it was that simple.

Perhaps if I wasn't stressing about money it wouldn't be so bad, but I am desperate to make something happen financially. It is partly what drives me. If I think about it, another part might be the small thing called "death."

I wanted to even do more today, but I just can't. I sat down to paint, but really didn't want to. If I had listened to how I felt, I wouldn't have. The result was what felt like a freaking mess. I got so frustrated at one point, I just dropped paint on the canvas. Interestingly as I just typed "paint," I almost typo'd "pain."

Maybe that is just what I was doing. I was dropping my pain on to the canvas. In the end the work isn't terrible, but like one I did perhaps a week ago, I am not sure what I think. I just couldn't get it to be much different than it turned out. It was as if I needed to go over and over and over it again, perhaps as a way of releasing what I felt.

I don't really know if that is what happened, but what I do know is that I wanted to just give up at one point. I was just going to surrender to the mess and call it the day's work. But I didn't. I kept going like I often do until it "told" me it was done. I still think it is quite the mess, but just a different one.

I never imagined this is why I decided to paint. But the more I paint, and the more experiences I have with it, the more I suspect it is exactly why I am doing it.

I am not sure why I am writing now, other than perhaps as a release. I can barely keep my eyes open. Even if I wanted to work, I don't think I could. I was going to paint some jewelry today, but decided that it was probably better not to. I want people to like my jewelry, and not be depressed by it. I am not sure what would come out if I did it the way I feel right now.

I had wanted to rest, but all I have been doing is working. Maybe it is a good thing, as I have been doing some great things that I love and enjoy. But I am exhausted beyond measure at the moment.

I think I really need to go to sleep.

Two Things Cooking

I am trying to find places to display my art. Unfortunately I decided to be creative only after many of the places I have spoken with have booked their 2015 schedule.

As much as I hate to say it, when I hear that, I wonder where I will be in 2016. To be potentially morbid, will I still be here, and what shape will I be in?

I am trying to "be positive," but there are times when people talk about planning for the future I get uneasy. I am hoping it is "just" fear. After all, none of us know where we will be in the next 5 minutes, much less 14 months from now. We just think we do. But it is just a finely tuned illusion that gives us the illusion we think we have a clue.

I am feeling all kinds of things right now. Fear. Excitement. Exhaustion. Overwhelm.

There is so much that can be done. There is so much to be done. I am all over the place grasping for things. Some might think I am grasping for straws. Some may think I am trying to find the thing that works for me. Some may think I should "focus."

I don't know what I think. When this happens, I feel like I am not going where the wind takes me, but rather going where a part of me has already been taken. I am already a part way to where I think I am headed - ultimately often winding up somewhere else in the process.

Is it effective? I don't really know. Any person who thinks in a methodical, linear way probably wouldn't think so. But they're not me.

My "travels" all over the place have taken me to things that have become the foundation for other things. I am often grateful for the diversity that has been me.

So right now two things are cooking: where/how do I self-publish a book of the paintings I am working on and where/how do I display my art?

If you can help in either regard, please let me know.

Thank you.

Sunday, October 26, 2014

I hadn't checked my...

I hadn't checked my bank balance in a while. I try not to; it is often too scary to contemplate. When I was diagnosed with cancer I had been trying to pay off my credit card debt. I was doing good, too, I would have been paid off within the year.

But then, as they say, "disaster struck." Thankfully something told me not to give all the money I had to my debts, and I had a bit of savings to live off of, and at the time I just wanted to make it to the end of chemo, which was predicted to be around the end of the year. At that time, I had hoped that things would "get back to normal."

I wound up asking for help, as I knew I couldn't make it without it. That is when this blog went from anonymous to being about "Elizabeth Alraune." I put my name, my face, and other things about myself here in the hope that it would give me and my situation "credibility."

It was painful to have to ask for help. It hurt for many reasons, not the least of which was the fact that I was giving up any semblance of privacy that I had prior to that time. There was a part of me that was terrified.

What followed has been something that I don't even know how to begin to describe in just a few words. There are over 1200 blog posts and 250 videos that have probably not even scratched the surface of what I have dealt with in the last 2+ years as a result of being so public, and so publicly "needy."

I have requested countless times for help in a myriad of forms - not just money. I have asked people to share about my book Sometimes It Sucks to be Human, my Cedonaah/Facebook.com/Cedonaah artwork and jewelry, my MP3s Relatingtocancer.com/mp3s.html, my recipes GreatFoodEscape.com, and have done all I can to express my need for help.

Often my need is judged by others in some way negative, or I am in some way judged negative for my approach, although I cannot imagine what another way to be would be. I need help! It really is that simple, and there are often times I feel as though I am failing at "marketing my illness."

Many times there will be other people involved when a person needs money and financial support. It sounds a lot different when it comes from someone else than it does when it comes from the someone in need.

Well. I don't have that. The fact is that a lot of the "shoulds" that people think I should have, I don't have either. I also don't "present" well as someone who is dealing with cancer. I sound and look too good for most to think I need help.

Ken Newman has had a couple of fundraisers for me, for which I am incredibly grateful. He raised less than $1000. Some may read that, and think that I am ungrateful for what I received. The fact is that I am sharing that fact because despite being a "fundraiser," it was a finger in a gushing crack in a dam. It helped me get by a bit longer because of it, and I can't thank those who did contribute enough. But it wasn't enough for me to have to stop asking for help. It wasn't a "miracle cure" for my finances. Sandra Bearden also has done what she can, along with others that she has recruited, but in the big picture, the huge crack still exists.

Someone in the NYC area offered to play a concert to benefit me, but needed someone to spearhead the event. I haven't found anyone yet. I even wondered if at some point I could do it. But how? It takes a lot of investment to make that happen. I know Ken and others put a lot of effort into what they did, and I think they may have been more disappointed than I was for the net result. And if I did it, then it would take my limited energy away from other things.

It is very difficult to ask anyone to make that kind of "investment." It is one reason why I have never directly asked anyone to do a fundraiser for me. I have said things in round about ways, but never directly to anyone have I said, "Will you please do a fundraiser for me?" For some that might be an "obvious" thing to ask/do, but it is even more awkward than anything else I have done, and given the reaction I have received when I have said some things, I feel like I don't want to touch the hot stove again.

Sherri Robbins has offered to do a fundraiser, and the date is set for November. She had shot to do one earlier this year, but the turnout had been minimal. She is someone who could easily not do anything for me, as she is dealing with her own issues. The fact that she is extending herself in the way that she is makes her all the more special to me.

I also recently met someone who "within minutes" of meeting with me and talking about my situation, was seeing what she could do to pull together an event to help me. A VIRTUAL STRANGER - within minutes. She is dealing with her own stuff, too, but felt drawn to want to help.

Whether or not it happens remains to be seen. But I am so grateful for her willingness to even consider the undertaking. There are people who know me better and longer who have not even gone close to there.

It is a tough topic. Many will say those that can't/won't help aren't "true" friends. I don't know that I would agree with that. But what I do know is that the topic of cancer is a difficult one, and I think it may only be topped in a degree of difficulty when it comes to the topic of cancer and money/finances. So many people have told me they couldn't possibly talk to their friends/family/community about me because those people don't know me. It's just too awkward.

And, yet, when others do talk about me, total strangers have contributed.

In my book, I mention that early on my mother gave me some money, but I don't say how much. I was told I should probably say, as some might think it was a significant amount. Well. In the time that I have been dealing with cancer, I will tell you that I have received less than $500 from her. I was hesitant to say much more, as I am all too aware of how it might make her feel by my sharing this.

But I feel I need to talk about it, as I feel there are things that people wonder about, and they probably think that somehow I must have a storehouse of money or someone who takes care of me. Well. I have neither. It really is just me, myself and I. And unfortunately we're all struggling to try to find a way to either get an income or get much needed help.

The fact is that I have had some strangers be quite generous with me. and there are a few people that I have depended on during these last years. It is the only way that I have made it as far as I have. I am almost 2 years beyond where I wanted to get. What has happened is impossible without the help that I have received. It is incredible that I have gotten this far.

But here's the thing...I am almost out of money and I am struggling with how to once again say I need help. The refrain has come way too many times in the last couple of years. It is why I am sitting here writing what I am. Maybe if I put my thoughts and experience together in one place instead of a little here and a little there maybe it will help people better understand how difficult this is for me on so many levels.

I have also discovered that once you enter the maze called "cancer," it is not the easiest thing to have things return to "normal," or at least the normal you once knew. Chemo has left me with lingering aches and pains and my mind still has residual blips that are so frustrating and annoying. I try to let people know what I am dealing with so that they don't think that I am somehow not doing what they think I "obviously" should have been doing.

A couple of days ago, I was in the store, and a friend gave me money to buy something since I was buying other things. She, in return, should have gotten change and the item. Well. I got home and promptly put the item away - completely forgetting that it was HERS! I also completely forgot about the money she gave me. The whole exchange we had disappeared from my mind. *POOF*

The only reason I have since remembered is because she asked me about it. And when she did I was mortified. I was embarrassed. It sucked so much. And now I can't forget it because there is a lot of scarring emotional impact. But this isn't the first time that something has disappeared. It happens way too often, and many times, people may have no idea because the one that is mostly affected is me. But the times it affects other people and how they may see me really suck more than I could probably ever convey.

I live in a world in which people think that someone who doesn't do something is rude, ungrateful and a whole slew of other not so great adjectives. When people do not understand when another is facing issues that make things happen in a way they cannot understand or appreciate, it can create unfortunate issues. There are many times I am on pins and needles when dealing with other people. What stays in my mind, and what goes, is not predictable. Some say "make a list." Well you have to remember that you made one, first, for it to have some value.

I have tried to make the things that I offer/do reasonably priced. I think most of my work is under $25. I would love to charge more, of course, as there is a lot that goes into them, but my thought has been that the smaller amounts could add up. I have thought that there is a lot of good stuff in my work that is valuable at the amount I am asking. Thankfully I don't think I am making this up, as others have acknowledged the quality of my work, and have even expressed dismay at my not seemingly being able to be doing well.

That, too, is awkward. I have no idea how to understand that piece of the puzzle, other than somehow it has something to do with the "c" word.

It leaves me in a void. It is one I don't know how to leave. I am sure there is so much more to this conversation. But it is a hard one to have when I often wind up feeling defensive by what people's reactions are, and by the fact that I "need" to have people's help or purchases in the first place.

The best I can hope for is that people who read this, or come in contact with me, have some compassion and understanding for me and my situation, even if they can't understand what I am facing. The fact that I have said so much in this blog is likely overwhelming to most people. It is a lot easier to stay away. I don't blame anyone, really.

But in the midst of the reactions of others, I am standing here needing to find a way to get help. So often people tell me that others don't matter. "Forget them," they say. Well. If I had lots of money and no worries I could live in isolation and not care what others thought, said or did. But I don't.

I need to care about you not only because I need your help, but because it is a part of who I am. I often try to see all sides of an issue - even when others may think I don't. Believe me when I say I have considered probably almost anything you could say to me at this point.

There have been times I have been told I even do that too much, which of course is ironic when I don't seem to be doing it.

Please know that if you can or will help me, I am extremely grateful for whatever you might do. Even if you contributed $1, it means a lot. I have smiled big smiles when I see those types of donations because those people have truly gotten how much I truly mean each and every $1 will help. So many say they can't afford to help, but it's probably because they think it has to be some significant amount.

Well $1 is a significant amount to me. It really does add up. No one fundraiser has given me what I need for any length of time. It is the smaller amounts that have made the difference in the big picture.

If you would like to help me financially, please visit Heartsgiving.com where you can find out how to help (including a tax-deductible option). You could also visit any of the links I mentioned above and buy something that would be of interest/that would be potentially helpful to you. I am also willing to entertain using my work to help financially help/support another in need, so if you know anyone else who needs to raise funds, please have them get in touch with me.

I need ACTION right now. I need people to do more than click LIKES and share. It probably helps in some way, but it doesn't help me pay my bills and eat. If there is any way you can help make that happen, I would be incredibly grateful.

Thank you.

Friday, October 24, 2014

Acting As If...

I have been acting as if nothing is "wrong." I have been living in a way the last few weeks that I haven't done in a long time. One might think that is a "good" thing.


Yes. and No. I think.

This break from the doctors I believe concerned them. I was even asked if I had wanted a heavy-duty narcotic for pain before the break - just in case. At first I said no. But then, my doctor was a bit persistent, so I said, "what the heck?" When she realized I was "naive" when it came to them, she decided against it. She also quickly explained what "naive" meant in medical terms, so as not to offend me.

There are times I am barely aware that I am dealing with cancer. I feel good. I have energy. I am doing what I want to be doing. There is no extreme pain. It is incredible. I can only imagine it might be healing, too, on some level.

But this pushing that I am doing, and there is no doubt in my mind it is pushing, is taking a toll on me. I am more and more exhausted at night when I don't get any rest during the day. There have been a few mornings I could barely move, and was in bed for hours before deciding to finally make my way out of bed.

Today I was in bed for hours, but it was a bit more a choice of venue for a long conversation I had with Sherri Robbins. She has become such a good friend and ally throughout this journey. We met just over a year ago at a networking meeting. She could have very easily have kept her distance, like so many do, but she chose to get to know me. She got to know all of me by spending time talking to me. She even went on one of my doctor's appointments earlier this year, and got to see what I go through when I have my visits. Her jaw dropped a time, or two, or ten.

Sherri could have easily have run then, too. But she didn't.

Now she is planning a fundraiser for me for next month. It, I believe, will be held in Bel Air, Maryland. I should go get the link, and put it here, but I am being "lazy" and choosing not to. You can find info about it by contacting me, or her, or checking my Facebook page Facebook.com/relatetocancerevents.

I put "lazy" in quotes because when you feel the things I do, you really have to be mindful of everything that you do. Each and everything takes energy, and you become acutely aware of that fact when you have limited energy to draw upon.

In our conversation today we touched on many topics. One of them had to do with my "marketing," or lack thereof. Sherri was being supportive, and was being persistent about how I needed to do more to get sales and get the word out. Not that she isn't "right," exactly, but it pressed a button and I started to cry. Even if I agreed with everything she said, I would need another two, or more, of me to do everything that "should" be done. I just can't do it all.

I know that what I am doing is less than ideal. But it would be really great if people would work with me instead of sitting back and judging what my perceived lacks are. Is what I am doing incredibly professional? On some level, absolutely not. But, so freaking what? People have been trained so well to expect certain things for a certain appearance. But that doesn't mean it HAS to be that way. But some may just think it has to be because somehow one person's idea became the expected, and the "norm."

There is so much I would love to do. I just can't do it all. I can't even do as much as I could, if I wasn't dealing with what I am dealing with. I feel like I need to say that, as all too often I think I am lumped into categories like "jewelry maker" or "business owner" or "struggling person" or many others that have me seem to be "just" like everyone else in that category. The fact is, I am not. I wish I was. I miss those days of appearing non-exceptional.

It's not like I want to make a big deal of cancer. I really rather not. But the fact is that it is a fact in my life. It is something I have to deal with. It is something that appears to me exceptional - at least when acknowledged. It is something that precludes me from being wholly categorized in the same way that others are in a certain grouping, unless that grouping is single women dealing with cancer, with no mate, no children, no family to count on financially, business owner, jewelry maker, artist, with shoulder and back pain, at times unable to move, their mind has been altered by chemo, wears glasses, has lost weight due to surgery and chemo, and has gained weight thanks to steroids to counteract life-threatening allergic reactions, needs money for car and teeth repairs, but doesn't have enough money for the most basic of bills, is teetering financially and reluctantly considering bankruptcy, has no money to pay for rent, and is living with a friend who is being sweet enough to allow her to live there, but it is not a permanent fix, and needing a place to stay looms in the background and the doctors think she should go back on chemo, or likely die sooner, rather than later, having been told they believe chemo will not take care of the cancer this time.

I am sure there is more, but I am sure you get the idea.

The fact is we are all unique. Even those who are in those groupings without dealing with cancer or a major illness. We just tend to ignore many of the facts. We tend to focus on what we relate to. If we're struggling with something, then why should we pay attention to another who is struggling with a similar thing?

But. Here is a weird part. I find that those who seem to want to help me the most are the ones who are in some ways the least likely to be able to help. They are ones who are dealing with some heavy duty stuff themselves. Is it that our ability to understand or understand another's situation appreciates with the level of pain and dysfunction? 

I know I was in pain before, and had issues before, but while I wanted to help others then - I never wanted to help others more than I do now, being where I am, dealing with what I have been dealing with. But the difference between now and then is massive. Does it take a massive shift to want to make an impact for others dealing with issues? 

I recently had a friend who did things for me. I gave her some money. She noted that it seems that we just pass money back and forth between us. Neither one of us has any to spare, and yet when we can we seem to try to help the other out. I don't suppose that is a "bad" thing, but it would certainly help us both if others outside of our loop could somehow partake.

There are times I do not want to be "special." There are times I absolutely hate it. But, just like there are times I just can't do all that I want to do, there are times I also need to call attention to the things that people aren't noticing - or want to notice. How are others to know what is truly going on if we don't speak up?

I haven't been making much "cancer" or "need" noise lately, and I haven't received much in the way of donations. A few weeks ago I received $100. It was a big deal, made bigger by the fact that I later found out that the person is out of work and dealing with her own issues. I am incredibly grateful. 

But here's the thing: it is "only" $100. I can't live on only $100. I have a greater need that I so wish I did not have. It has been made clear to me by some that "need" is a dirty word of sorts. Say lots of things, but say positive ones. I am not supposed to be in that place. I am supposed to be powerful and smile and say "cheese" for the birdy, no matter how I am feeling.

Well. These last few weeks I haven't been as verbal, and I also haven't gotten the kind of help I have gotten when I have expressed how I have truly felt, and the urgency around my situation. My silence is more a function of exhaustion than of an exhausted need.

It is now several hours later, and I need to get some rest...so this will need to end abruptly...oh well. Sweet dreams.

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.


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


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.