Monday, June 29, 2015

Shoes and Distractions

I just watched an episode of Larry Wilmore's show for the first time. In it, he discusses with a panel the "n" word, and Obama's use of it. The very last thing he says is that he doesn't think any particular language should be banned; we should should learn how to use it.

The conversation runs the gamut, and the violent history and its current use are talked about. Is it OK to try to make it mean something ok and new when its origins are as bad as they are?

I have thought about these things before, but like the one white panelist, I am not sure how much weight anything I think about it should carry. But that doesn't mean I don't have opinions or impressions. From where I stand, which is no where near where others closest to the topic do, I thought in some ways having a new meaning was like a taking back of power. In some ways I wondered if it could be healing. 

Notice, I said, "wondered."

I can't speak to it with absolute authority, as I am not in the shoes of those it directly potentially impacts. That is like so much of life. So rarely can we understand the issues and cares and concerns and conversations of others, and yet we think we know the answers they should choose.

It is the broader aspect that draws me to this conversation, not so much the word itself. I think about how there are other ethnicities that have had derogatory terms used when referencing them. Some would say it's not nearly the same, and perhaps, if it was a contest, they might be right. 

The one thing I often tell people is that they should stop comparing themselves to me. They'll be upset about something in regard to their own life, but then turn around and apologize, because "it's not cancer." It doesn't have to be cancer to be painful. And it's not a contest.

Everything is relative.

A person's pain is relative. A culture's pain is relative. Sometimes people may think they "understand" what others went through, but the fact is, they never really, ever could. Does it mean they shouldn't try to understand? Does it mean they shouldn't use the situation to seek to learn something? Not at all.

I think, though, it does mean that when it comes to what does, or doesn't, happen in regard to a significant something that "belongs" in one context more than others, the context that fits those most directly impacted should carry more - if not all the - weight. And it shouldn't be a weight that in any way is minimalized or marginalized by those outside of it.

We have so many issues when we try to step into shoes that we never even want to wear. We may think because they are not for us, they shouldn't be for anyone. But, instead of leaving them alone, and allowing others to do what they will with them, we go on campaigns about something we can probably never fully understand because it is not our experience, and likely never even will be. We wind up carrying the shoes, or even leaving them home, in the closet, and using that as a substitute for any real knowledge we may think we have on a subject.

This way of looking at things gets us into a lot of trouble when we try to go beyond our own immediate experience, and overlay it on others - others that the shoes actually fit perfectly. We can't even hear what they say because we are more certain about what we have made up about those shoes than we could ever be about what they say their experience is. We own our story. The rest is just hearsay, and is likely to be more wrong than what we have told ourselves about those "shoes."

I imagine that might be part of the problem when it comes to the bigger picture of things. Our ego never likes to be wrong. We fight for those things our ego believes, even when they may not really even work. We do it because we also need to hold onto the familiar. Our sub-conscious mind thinks it helps us survive by finding the things we know, and we know what we think more than we could ever know something that removed from what our life is - or likely ever would be.

I tend to think the highlighting of the uncomfortable conversations is a good thing, as I think it can help to bring stuff into the light. Tell someone you can't say or do something, and what happens? That is all they can think about, and want to do. It also reinforces fear in cases in which the reasoning for the tucking is the fear. It will feed off of itself. People are a lot more uncomfortable with the topics we're not "supposed" to talk about because we don't talk about them. And by not talking about them, they remain unfamiliar, and by remaining unfamiliar, they stay uncomfortable.

We have the perfect mechanisms in place to keep fear and hate in place, as well as pain. Just tuck them away. And for those unwilling to tuck, make them as uncomfortable as possible because you are uncomfortable. By causing them distress and discomfort, hope they will go back to that place of silence. 

What many people do not realize is that those who will not be silenced likely are all doing us a favor. They are doing us a favor because they recognize that the cost of the silence is so much greater than the cost of speaking up - at least in terms of their soul. They may die by speaking up and out, but they are dying being true to who they are. 

You may think death is the greatest cost. By the person who died likely felt that there was an even greater death/cost in their silence.

That says a lot, don't you think? 

I never speak up about stuff because I necessarily want to. I do it because it is my soul's food. It is what my soul requires to keep going. Many times I have said I believe it is why I am still here.

I do not think this is just "my" thing. I suspect others would benefit from the same type of food, and yet it is not one that is a steady part of the diet of many. We would rather regulate how others live their lives, and  how they view things, and what they say, and what they do than step back and really look at our own lives, and where we have willingly chosen to be silent.

It is much easier to distract and be distracted than it is to come face to face with who we are. We have been taught that "those" things aren't supposed to come out, and we know what will happen if they do. We already know it is such a bad thing that we go to such great lengths to "protect" ourselves.

The worst part? We are so damn good at this, we don't even know we're doing it most of the time. 

But we kind of DO know. We get nudgings. We get signs. We know something is not right. What we do with thise things will have a lot to do with what does - or doesn't - happen next.

For me I had a lot of those. I had itty-bitty changes along the way. But apparently, I needed a big, swift kick in the butt because when cancer showed up things had no choice but to change.

I am grateful for the changes. I just wish it hadn't taken something like cancer to make that happen. What possibilities might there have been to be healthy AND free?

But I had to ultimately feel like I had nothing to lose to truly step into I am. Anything before that might have seemed to carry too hefty a price tag. All the questions. All the concerns. Perhaps they were all valid, too, which in some way makes it understandable why I would remain stuck.

But when you have nothing left to lose, you realize it doesn't matter. Nothing does. You do what you do because you do it. Because you want to. You need to. You have to. There is nothing that can stop you and, if anything, your situation now insists that you do the things you never would have before.

But, dang, does it take a lot to get there, and hopefully you do not die in the process. Although there certainly will be times you will feel like you are having many mini deaths along the way.

If you are fortunate enough, you will get a wake up call that allows you to be more fully aware and present in your life than you have ever been. And healthy enough to go out into the world, not as others think you "should" be, but as the gift you truly are.

We can't even begin to access all of who we are until we get all of who we are not out of the way. 

Maybe conversations about "the 'n' word" help people figure out who they are. Maybe that is the important piece they serve in the world-at-large.

Those things that help us figure out who we are not are just as important as those things that help us figure out who we are, and sometimes they happen simultaneously. And, maybe, when we are giving another person a hard time what really are doing is helping them discover more about who they truly are. It would likely sound better if weren't potentially ignoring ourselves in the process of focusing on someone and something that really isn't our issue, and could never really personally affect us.

This was intense. I think I am done for now. Later.

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Sunday, June 28, 2015

If you want to be in my life....

There is a person I very much need to talk to about this topic. As I think about the conversation, I think there are several things I need to say that will be well worth sharing more publicly, formally, and perhaps in a quasi-organized fashion. The result of this thinking, I am hoping, will be this blog post.

My idea is not so much to have a List of Rules to Live By, but more so by "guided" by. No one likes to be told how to be, so I don't think having absolute rules will be terribly helpful. Having said that, it will certainly be an ideal for me and my situation, and if anyone wants to be in my life, I think doing as much as possible on this list will certainly make things easier, better - and have a better chance of actually working - for both of us.

I know no one is "perfect." I am just finding myself needing to express certain things that are rarely - if ever - addressed. By addressing them, it is my hope that it will create possibilities where they may not have existed. I am hoping to enable conversations and scenarios that not only enable us - but can enable relationships more broadly - as not everything is "cancer specific."

1. You cannot fix me, or my situation. Please refrain from taking this as a negative, or as a potential challenge. You are not my cheerleader, and do not need to be. Consider viewing it as a "relief." There is nothing for you to do - but be you.

2. If you do not know how to respond to me, or do not know how to say how you feel about me/my situation - tell me. Holding it in and/or refraining from saying stuff will only make things worse. I am no mind reader, and you do not have to walk on egg shells. You are entitled to how you feel. Odds are there will be very little - if anything - I have not already heard from someone else. We may not come to any resolution, but at least what bothers you will no longer be bubbling under the surface.

3. Refrain from making Universal assessments about me, my mental and physical health, anything about my situation from the snippets of time you spend with me. If you only talk to me once a month, you may very well be getting me at the worst possible time each month. How I am then it is not necessarily representative of how I am the many other hours and days in the month.

4. If I call you, do your best to be available to me. Yes. you may be busy. Yes. Whatever it may be may be very important. I get that. But just how often do I call you? By now you hopefully realize that my "good time" is at a minimum, and calling me back is not the same as just calling almost anyone else back. My moment of clarity and lack of nausea may be long gone by the time you respond. I could also be sleeping - which is a prized event, especially feeling as crappy as I have. I so rarely reach out, it means a lot to me when I can actually get the person I reach out to.

5. It means a lot that you want to reach out to me, learn my cycle, and learn the best ways to interact, and then take initiative, without expectation, and a willingness to follow up. If I do not respond, it is quite possible I forgot. Make sure I have your number, too, often if I can do anything at all, it is a conversation.

6. Acknowledge that you have NO CLUE what I am going through. You may have some of your own experiences with cancer, but still...you have NO CLUE what *I* personally face. By acknowledging that fact you will less likely minimize me or my circumstances, or judge how I handle everything. If you have no idea what I am facing, how could you possibly know that what I am doing is as "wrong" as you think it is? And that what you think is as "right" as you think it is?

7. By being willing to acknowledge me, and where I am at, you can hopefully recognize that my reactions to you are not meant as a slight, and should not be taken personally. We do not need to agree on all things. But if we are going to be in each other's life, we can respect where the other person may be and keep going. We don't need to go over it a lot. A genuine appreciation and acknowledgment can go a lot farther than a perfunctory one, or one that doesn't even have a chance to exist because the conversation is avoided. 

Acknowledging my reality, instead of defending yourself, another perspective, another whatever, is an incredible gift to me. It allows me to relax, instead of potentially igniting my own internal mechanisms which could have me "fighting" for the last thing I want to be fighting for. I realize it may be painful to hear. I realize you may not like it. But your dislike for the details does in no way change my facts nor my circumstances, and neither will your insistence about some other something. I have actually found allowing myself the array of emotions and feelings and thoughts I have is a very good thing. I tend to get to better places faster than when I ignore, deny, suppress.

8. I'd like to think that if we are around each other at this point it is because we have a core of some sort that can help through the bumps. Can you be all I need? Quite possibly not. But I also may not want what you think I need, either. And it can all be ok - if we focus on the stuff that matters, and not the stuff that could all too unnecessarily get in the way. 

9. I promise to do my best to always respect you and your right to choose what you think is in your best interest for you. That could include refraining from the things you want me to refrain from. That could include being someone different to you in a moment than I want to be because I know how important it is for you, and how much you need it. I also promise to do my best to respect myself, and would ask that you do the same for yourself. If something really isn't working, or can't work, it needs to be addressed. I also ask that you respect me in the same ways that I would respect you. The only way we will know what works for the other is if we talk about it, honestly and openly.

From my experience, those I have been able to have anything that resembles the above are those I have had the most open and honest and healthy relationships with. I value them more than words can say. It is desperately what I need in my life right now, and if you think you can use these guidelines, I would be incredibly appreciative. 

Can we still be in contact if not? I don't see why not. It just may be harder, or more frustrating, or more disappointing, or...maybe it will also be just fine.

There is no "one" way to do anything. And there is no "best" way, either. At least, in my world and perspective. So much will vary. I do, however, think being able to speak up is one of the best possible things we can do to get along with each other. The problem, however, becomes what people do with those things that are said. Do they become walls, or do they become building blocks?

We have come to believe that if we say how we feel then that should be enough to affect another. Expression can often be seen as a means to an end. I tell you how I feel, and that changes how you feel. If, however, that doesn't happen, there is a whole lotta head-butting going on - and worse. It is no wonder people can't say what they really feel. It can be too intimidating, and too scary. It can also feel ineffectual, if only done to create an outcome that doesn't transpire.

I suspect if we could universally get better at stating how we feel without it having to effect a certain outcome, we would get along better. I also suspect we might say less, as often I wonder if we express opinions more as a means to an end more so than anything else.

There are many things I do not talk about these days. Not really sure there is a point. Limited energy and options certainly make for a cautious/conscious cherry-picker. Maybe if we were more aware of where we put our energies, we would spend less of it in ways that have us at odds at each other - sometimes unnecessarily.

There are people in my life I feel are disappointed in me. They had something in mind that I apparently failed to meet. I don't know about you, but not only am I not a mindreader, but I am also not in a position to live into what others want or need or expect right now - UNLESS - it is something I am aware of and, more importantly, works for me. If it takes away from me, it just likely ain't gonna happen. It doesn't mean I don't care about the other person. It means that I am worth more than what they desire will cost me. It is not an odd perspective, really. And, yet, we have been conditioned that it is good to give away pieces of ourselves. To not do it makes us seem like a bad person.

To many I became "bad" when I put my foot down. I already was bad, I just became more so because I was no longer willing to play life the way people have come to expect. We would have a much easier time being ourselves, if we weren't so busy trying to have others be someone they're not because that's what we want, and the way we prefer it.

Either what I describe here will work for you, or it won't and I respect wherever you fall in the spectrum of possibilities. And if what I describe doesn't work for you, I do not expect you to change to suit me. I am not a petulant, demanding, selfish child, despite what some others may think. :p I care enough about both of us enough to say if it doesn't work, it doesn't work. 

Life is short enough without wasting parts of it needlessly. Things don't work out in relation to me? Give your good love and energies to someone else in your life.

Lots of love.

PS As with anything, it is possible I did not convey things as well, or as comprehensively, as I would have liked. If I wait to publish this, I may forget I even wrote it. Therefore, it stands "as is" until, or if, the "is" changes.  As with everything I do, it is written from my heart. But, as it is a human heart, my humanity doesn't always come off the way I want to. I'd like to believe at the core there is a good message here; I guess it will remain to be seen how others react to it and interpret it. It will be interesting to see if it comes off anywhere close to where I'd like it to.

Saturday, June 27, 2015

I do (and I don't)

I do, and I don't, want food. It is a hell of a paradox. A being whose presence in this world has everything to do with food currently is grappling with the issues that is has as a result of eating it. 

So. First of all, I am "supposed" to eat. Second of all I "need" to eat. Third of all, I WANT to eat.

It has been weeks of discomfort in that regard, but the last one worse than any other. Food that goes in doesn't seem to be able to work itself out. So once I do things to encourage it, it comes running out. This; provided I am even awake to eat, or have an appetite, or am without horrible waves of nausea.

In the last week I have not eaten much at all, and hard sourdough pretzels have been my go to food. Not thrilled about this, but it really is the only thing I can count on. That, and the Recharge drink which is really more expensive than I should do right now, but I have to. I need the electrolytes.

This morning I had egg fried rice for breakfast. The most "complicated" meal in a week. I cooked the rice in homemade chicken broth with a bit of coconut oil, and stuck it in the fridge last night. I read somewhere that doing that (the fridge and the coconut oil) helps it be more digestible somehow. I couldn't know for sure, but I suspect it does matter - given the few times I have tried it. 

Because the refrigeration makes it better to cook with I have often refrigerated it when I had the time, I did not know about the coconut oil part. There is a slight coconut oil taste, but it mixes well with the sesame oil and soy sauce.

I had made a cup and a half of rice, which I knew would be too much. But I had hopes that it would potentially be able to be eaten over the course of a few meals/a few days. Before eating it, I took several supplements, including digestive enzymes and gas-x. I added some garlic and peas, and hoped that I would not be writhing and crying in pain over it later.

It felt like a rather big experiment to take on in some ways, and, yet, most of the ingredients - the broth, the rice, the eggs, were fairly safe bets, at least if they had been on their own. I am feeling a lot better than I did yesterday, which was a HUGE step back day for me. I was so weak, and slept most of the day, and pretzels and watermelon was all I had to eat. Cutting up the watermelon, and making the rice, took everything out of me that I had left, and then some.

As I share all of this stuff, I think about how there are those who read my words and think, "there she goes, focusing on the negative." When I think about recent blog posts, they would likely cumulatively been seen that way. I am not sure it is all that those would have it be, as thingsi people do not want to hear can often be misconstrued as "negative," when in actuality, they are "fact."

Added to this is the question about what else I could write about. I could write about the incredible storms we have had lately. I could write about my friend's cat. I could write about my coleus plant. I suppose I could find other things to write about, but when I write I am writing about what is immediately present for me. It is a way of releasing and discharging the reality I am facing. To do anything else would be a ridiculous exercise in denial that I already know won't work for me. 

It might be something a reader would prefer. Ironically, though, someone who read my book said it should be "more" about cancer. While you might not like my "negative" stuff, my guess is you would hardly find the other things interesting. There is a perversity that we have around rubbernecking in other people's lives. I suspect from the standpoint of judgment alone, people are more engaged when there is something to judge versus when something seems mostly bland. 

If we didn't care enough to judge, it wouldn't be surprising to find we didn't care at all.

Really not sure what I think of that statement. Do I really believe it? I suspect, like many things, it fits some things, and isn't a statement that is absolute in its nature. Although the fact that it was said at all would be enough for some to take it on as though it was absolute.

But, what if it was true - even in "some" cases? What would that mean? Is much of what it we do currently predicated on getting people to react? And what are reactions? Often if they're not judgments, they are at least a relation. Are we encouraging people to judge by asking what they think? 

"Good" bloggers "know" they should ask for their reader's opinion. Why? Because it engages them. It could be the reader will agree, and be engaged, but there are many times you will see much more "negative" response engagement than positive, especially in regard to those topics that are the hottest of buttons.

Are all thoughts judgments?

Judgment is defined as, "the ability to make considered decisions or come to sensible conclusions." Does that mean my saying, "it is raining outside" is a judgment? Provided, it is raining when I say it? It would seem, after all, a "sensible conclusion." 

But what happens when one's "sensible conclusion" is another's "lunacy?"

When we think something, are we able to have a thought without some judgmental basis - even if unconscious/unknown? It would seem we may be taught many "judgments" that guide our ability to function in the world. They become things we take for granted, and become what many would think were absolute in nature.

But, "sensible conclusions" are built upon something. What if the foundation upon which they were built gets shaken up somehow? Their absolute nature becomes nothing more than a dispelled illusion.

Does your head hurt? Mine does, a little. Lol. Not quite sure where I was headed with this, as it certainly was not a road I intended to take. But my mind does this sometimes. It questions the things that many times are not questioned. 

Some would ask, "what is the point?" If you question something, but come up with the same answer you always do, why question it? "It is just the way life is." "It is just the way people are." These, after all, are "sensible conclusions." To think otherwise, is to be judged naive, or stupid, or silly, or...any number of things...

Which is a greater force, agreement or disagreement? Wars are not fought between those in agreement. And yet those in agreement can become quite a force when meeting up with others who would disagree with what they believe. 

Would there be a swelling of agreement if there was nothing to agree together that they agree to be against? 

And what brings those beings to the place they stand? Their thoughts, which may very well be their judgments, their "sensible conclusions."

If our "sensible conclusions" have the ability to impact the lives, and livelihoods, of others, it would seem it might be good every now again to take a step back and question the things we think we know. After all, there are likely to be times in our own lives that we are standing on what others perceive is the "wrong" side of the agreement. Anyone who has already stood there knows just how much that can really suck.

What would happen if we stopped judging others? Can we? Is judgment a good thing, but not necessarily what we do with it? What could we do with our judgment, if we didn't put another down in the process? What if judgment is meant to be a way to internally guide one, versus what it often seems to be - a way to manipulate or assess or control others?

Does judgment really work when it is outwardly focused? Many times I think we wind up creating more problems trying to control the undesirable effect of a cause we know nothing about. As most of you probably realize, that often doesn't work terribly well. And that goes for things like our environment, our food chain, and other people. And it doesn't stop - anywhere.

We humans are incredibly arrogant. We think we can do anything. We have had a world history lesson that shows just how detrimental that type of thinking can be. I imagine there is a place for confidence and boldness when it comes to some things, but when we are able to be confident and bold without being cocky, we are less likely to find ourselves with egg in our face, or a whole hell of a lot worse.

Started with egg fried rice, and ended up talking about egg on one's face, sounds like a good place to stop. Maybe I will even go try to eat some more.

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Friday, June 26, 2015

The Way Forward...

With this chemo is apparently anything but straight.

Today has been a HUGE step backward.

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Tossing & Turning

I was tossing and turning, kinda awake, but not. I was dreaming of painting, creating. It has been a while since I have made anything. Perhaps a part of me is missing it. When I woke up it was because I was too nauseous to avoid how I was feeling. If I could have fully slept, maybe I could have avoided actually getting up. Instead, I went to get a pretzel, and my Recharge drink.

At first, I wondered if it was going to help. It didn't seem to be kicking in as my sure fire fix like other times. I even debated about taking some anti-nausea medication. If I have taken it even 5 times over the last 3 years, it is a lot. So for me to consider taking it says much about how I was feeling.

My digestion is still not right, either. Guessing it may have something to do with how I am feeling - besides the chemo obvious. Someone asked me if my Seaband wasn't working. Given what I know, it would be a hell of a lot worse without it. Of course I'd prefer it work in totality, but I may need to try both wrists, instead of just one.

The "good" thing I am going to claim is that at least my body is moving gas. It is good no one is around to experience it, though.

But the not so good thing that I do not want to claim is how insidious treatment is. There are moments I actually feel almost Ok, but then, BAM! Suddenly I feel weak and can barely move, or climb the stairs. Or nausea seems to be a thing of the "past" only to overwhelm me.

This better not continue all cycle. It will already be hard enough for me to go back for more given what has been. If I can not have extended times of "normalcy" without feeling run over by a truck, it will take a toll. In some ways, it already has. I have broken down in a huge way more than once recently.

Sherri talked to me about an art show. She would like for me to be there for it, I told her maybe she should plan for me not to be there. I have to hope things will get/be better, but right now all I am capable of doing is the bare minimum. 

This is going to sound awful, but I hadn't even taken a shower for a week. Besides the fact that I was sleeping so much, and could barely move, I wasn't sure the shower was the safest place to be.

I hesitate in saying something like this, given past experience of what others may think, I share it to offer perspective, but find some use it to judge me lacking in some way. Instead of creating empathy, it widens the divide. 

But it is part of my less than perfect reality right now. I told someone as imperfect as this situation is, it is the best I got. I am simultaneously grateful and terrified.

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Thursday, June 25, 2015


 Many times I have noted just how different "my story" would have been, if it had ended at any prior point. Had I listened to the obnoxious, arrogant GI doctor, and went home and tried to "eat more fiber" despite barely being able to eat (a significant sign of ovarian cancer, by the way), I suspect there is a fairly good chance I would not be here right now. 

I would never have claimed my artist self. I would never have taken my cross-country trip. I would never have written my book. I would never have become so outspoken. I would never have been so publicly raw. I would never have gotten to know who I truly am - and even better, live long enough to like the person I am.

I have spent so much of my life doubting myself because those around me would find who I was to be unsuitable in some way, there is the thought that if "that" many others think something, then maybe (really, more "likely") you have a blind spot, and you obviously need to work on it.

The problem was, a part of me was just smart enough to realize that they weren't really "right," but wasn't quite able to figure out how to get the rest of me to know it and be OK with it, especially since there were costs to that recognition. 

So what did I do? I half-assed things in the name of "trying." I did not think that was what I was doing, but that was the only solution I had at the time, and it wasn't a very good one. It still was never enough. I could never seem to be, do, or say the right thing. The alternative was to silence myself, often walking on eggshells trying to avoid any potential land mines.

It would seem to make sense, then, that I would have a hard time being around the people who made me feel this way. And, yet, there was an expectation. Even thinking of it now has me aware of the knots in my stomach. The contortions I would sometimes go through just to make a show.

Dealing with cancer changed everything. Someone said it gave me permission to be a bitch (or something like that) - and it wasn't meant in a "good" way. 

Dealing with cancer woke me up. It helped me see how much energy it took to be someone I wasn't to please other people I probably would never/could never please, short of being the person they thought I should be - given the version in front of them apparently was deemed inferior and unacceptable.

All the while I was going through the things I was, they, too, we're going through their stuff. It was never stuff they expressed, though. They weren't even being who they truly were, as they were trying to have me be someone I wasn't.

The part of me that is now labelled "bitch" is the part of me that just won't play the game any more. I say what I feel. I do not try to be someone I am not. The "pretend" part of who I am is gone. I won't be a certain way in the name of convention or shoulds. That doesn't work very well for those who live their lives within those parameters.

In the past, I could all too easily be drawn into an argument that neither me nor the other person could win. We just couldn't see eye to eye on pretty much anything. There is no winning an argument when the other person has zero interest in seeing things the way you do. One says the sky is grey, the other says the sky is blue, and all "conversational" points stay within their perspective skies. You get no where very fast.

In the past, though, I would feel the need to defend whatever I thought needed defense. If there was an argument, it was because inevitably I was wrong about something. So I could very easily be drawn into the verbal boxing ring. "Here we go again..." Often the alternative would be avoidance/silence, but that, too, was "wrong."

So now, in the present, I handle things differently. You say the sky is yellow? Well, you know what? I will acknowledge that is what you feel and believe, and I will not try to say otherwise. Even if in that belief there is an inherent belief that what I think is wrong, I no longer care to fight that battle, or defend myself. I also have a strong need for people to acknowledge my reality, so it only seems "right" that I would stop trying to convince you that my reality of your reality is the one you should be observing.

The "funny" thing about this approach? People think you aloof, indifferent, uncaring - a bitch.

So even when I am doing something I truly feel the world needs more of, and something I think that is positive and affirming, I am not seen in a positive way. The only way I might "win" is to forfeit myself in totality, but I am not convinced that once you give a person what they think they want, it really works, either. What they think they want may not even be anything like what they really want at all.

All I could ask from anyone at this point is to stop judging me, and to allow me my reality. It really is that simple. At least in word. It is also what I do my best to offer up others in the process of my daily life. The thing is, though, sometimes when a person points to things that make another uncomfortable, it may be taken as judgment, even when there is none inherent.

I think we really need to be able to speak our truth without it creating issues with others. One of the only ways we could do that is if we knew it was safe to do that. If we knew we wouldn't be attacked, put down, or judged. Just because we have a certain version of reality that another (or even many others) may disagree with does not makes us wrong.

As I write this, my mind goes to some extreme places. There would be some who would likely take issue with what I just said, and say there are likely to be cases in which that statement is not absolute. The fact is, I would not want to argue that point. I would not want an extreme example to negate an idea that likely could be beneficial in many other instances. 

In our need to be absolute about so much, our all or nothing attitude, I believe, does us an incredible disservice. So anyone can say whatever they want to say, and take whatever they want to take. I am just not feeling a need to spend energy to have a conversation that likely will go no where. Someone who is likely to pick on one piece of something is probably not likely going to allow other ideas to dispel what they believe. I suspect, perhaps unconsciously, they even pick it because they "know " they can win it. So there is no way they are going to let themselves "lose" any argument they may start.

It's just a theory. So who knows if I am "right?" It just kind of makes sense to me in this moment. Maybe moments from now, I will see things differently. You just never know what might show up that can alter the directions of your thoughts and beliefs.

Everything can change in a heartbeat, even those things we never imagined being anything but they have always been. And, just maybe, we are at our best when we recognize the impermability of life and all of its aspects. We just think we are somehow at our worst because that is when we stop trying to be anything or anyone that we are not. All of the acceptable, pretty, perfect facades fall away, and all we are left with is the nakedness of who we truly are. 

And we already know how uncomfortable we are with nudity, don't we?

But our discomfort doesn't mean it can't, shouldn't, or won't change. It also doesn't mean that change would be a "bad" thing. 

I really wonder if everyone in the world knew they were dealing with cancer, if the world might be a different place. I suspect many would likely equate "real" with "ugly," but there is more beauty in the ugly and dark than most will ever recognize or know because they are so desperate to avoid it at all costs. Some are terrified to tread in those places, for fear they may die.

As for me? I truly feel my willingness (even if it is at times reluctant willingness) to go to those horrid places is what has kept me alive until now. I think if others had a taste of the freedom that my situation has created, it would be very hard, if not impossible, to go back. They wouldn't want to. 

There is something quite amazing in being able to look life squarely in the eye, and see it for ALL that it is. Just because you see the darker, uglier stuff doesn't mean you have to take up residence there. So often people can't handle me when I am in a bad place. They are desperate to get me out of the bad place. They would be better off climbing into the bad place with me for a little bit, and then coming out of it with me. I tend to say where things are, and then move on when someone doesn't try to tell me to deny what I feel.

The minute I feel they are trying to have me deny how I feel, it is a very different story. I then sometimes feel like I want them to understand something they apparently do not. It gets really frustrating and emotional. Nothing worse than feeling like you aren't heard.

As I wrote this, I realize that this is a situation that is very different than what I relayed above. What about the other person's yellow sky? Can't I just let them have their version of my reality? 

In thinking about this seeming paradox, I think what I come up with is that there is a difference between someone denying my reality, and someone who wants me to deny my reality. The times that people try to have me deny my reality are much more difficult than when their desired version of my reality stays with them. So when I get upset, it isn't over the version of the "facts," it is more about the fact that the other person wants me to deny my "facts," ultimately denying myself.

It is something I just will not do any more. And the times that it does kinda sneak in any way are just so incredibly uncomfortable, they can't last very long.

Is this what it is? I do not really know, but it is what I have come to, for now. Just like before, all thoughts, feelings, beliefs are subject to change.

As I have always done, I am doing the best I can do. The difference now, though? I am a lot less likely to battle the Should Version of Me in the process.

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Wednesday, June 24, 2015

dealing with stuff...

When I began this blog - especially after I de-anonymized it - part of my intention was to have it be the "go to" place regarding how I was feeling, and what was going on with me. The idea of having to repeat potentially bad news, and just how crappy I felt was not at all appealing to me. (What a shocker, huh?)

It did not quite work out that way, though. Many times I would get people apologizing, and telling me they did not read my blog. I truly never got upset about it. A part of me understood the various reasons.

So. Here's the thing I am struggling with right now.

I have just had some of the worst days of my life. I still feel like shit today, but it is no where what it has been the last 5 days. Maybe, hopefully, fingers crossed, the worst is over, and I can start to feel more humane again, and maybe, just, maybe eat - after losing about 6 pounds in the last 6 days.

Before going any further, I just want to recognize that what I am about to say may not be taken in the way intended. It is not my intention to alienate anyone, make them feel awkward, or to piss anyone off. My only intention is to get it out and to share my struggle in a way that might be helpful to anyone who might be paying attention.

I have discovered just how bad of a question "how are you?" is for someone dealing with cancer. It has never been the most ideal question, but when the worst of what I would go through was much more momentary, and a lot less intense, answers were easier to come by.

A part of me wishes that there was some way to convey things in a way that worked for all parties, because feeling as I do, it is really hard to care about anything. Someone told me all kinds of stuff about themselves, and for as much as I wanted to be happy for them, and for as much as a part of me was, when they asked what was up with me I was torn. Do I give the smiley answer? Do I give the "I'm happy for you" answer? More importantly, do I skirt how I feel, or do I come out and give the "honest" and brutal answer? Do I essentially crap on their sundae?

Sorry to be so graphic. But that is why I suspect many people do not honestly talk about what they are dealing with. Firstly, how many really want to know the "truth?" And secondly, how do you not be "negative" in the midst of such a stark contrast? And third, with limited resources to marshall, it is distressing to have to care that much/be that "polite."

The fact is, this particular person would likely - at least I think - "get" where I am coming from, ultimately. They are human, so I could see coming off all horribly wrong in the midst of my Crap Storm. I suspect they'd get all kinds of emotions and stuff that don't really "belong" to them, and that is one reason why I haven't yet responded. On top of everything else, I don't need to make someone else I care about upset. My situation is already hard enough for anyone who cares about me.

Some who read this might read right past the parts that I would like to think are the "most important" because of what we are taught. Just like the person who told me that we are "taught to say thank you as children" in regard to the fact that in the midst of my life crisis I forgot to thank them, and someone else, I think we can be blinded by the "shoulds." I think we can be blinded to the point that, while they may "seem" to make some sort of sense, they don't always fit the context. And when the context alters, we often latch onto those shoulds to the detriment of ourselves and others when we have the inability - or unwillingness - to see that things are not what we think they are.

We become absolute in our approach, even when it hurts us, or those we care about. If we would actually step back and think about what we do, why we do it, and if it is truly appropriate in this particular circumstance, with this particular person, we might do things differently. We might allow ourselves and others our emotions and feelings. 

We are so determined to enforce these "shoulds" that we have mechanisms in place to keep people in their place. If you do not conform to the Should Way of Being you can be put in your place by words like "ungrateful," "selfish," and all kinds of words with anything but "positive" meaning. And we are taught these are not words we want to be labelled, so if we don't want that labeling, we best do as we "should." We want people to like us. We want to be loved.

When we do as we "should" then all is right with the world, right? 

I suspect you may not really believe that, but the world we live in gives us a run for the money in that regard. It doesn't make it easy for us to be ourselves and love that self. So few people would feel comfortable exposing whoever their truest self was. The fact is, many probably wouldn't like that person, but they may be surprised to find that there would be others who did. They'd also likely discover just how much it took having to be someone they're not to please others who are also likely being someone they're not because we walk around with this idea of what life is "supposed" to be, and act on that, rather than what it truly is.

If we truly love and care for someone, the best gift we can give them is to allow them to be wherever they are, whenever they are there. Will we like it? Will it be comfortable? Probably not. But if someone did it for you, you'd likely appreciate the fact that you could just let your guard down and just be yourself.

Monday, June 22, 2015

It has been a cake walk...until now...

This "one shot" chemo (1 time a month vs several) is horrid. Beyond horrid. If I couldn't sleep most of the time, I would go out of my mind. I can't eat properly because my digestion is messed up. I want to eat, as I am hungry, but the nausea tells me it is not a good idea.

In the last few days, I have eaten a banana, 4 or 5 pretzels, a little bit of yogurt (a couple ounces, maybe) and watermelon. I thought the watermelon would be a good choice, given it is mostly water. Afterward I started cramping.

I also still have to be careful what goes in, as things are taking their time finding the Exit Door.

I am really struggling with just about everything at the moment. It would be nice if we didn't have to eat. But the fact is, it is one way I have enjoyed life. I have enjoyed baking and cooking. It is really hard to think of having a Quality of Life when there doesn't seem to be any.

I have slept almost around the clock for several days now. I can barely stand at times. Going up and down steps is ridiculously slow, and I have to be sure to hold onto the railing so I have a brace. But I am so weak, I am not sure how much help I could really be to myself. Earlier I bent down to get the watermelon out of the bottom drawer, and had difficulty standing up.

When I was on Cisplatin last summer it was in smaller doses and miserable. I cannot even begin to imagine how it would have been in only one dose. I am fairly sure I have had a cake walk until now. And if that doesn't tell you something about what many must go through with treatment - especially if you know what I have been through - then I don't know what would.

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definitely bogey.

Sunday, June 21, 2015

Can't Decide if it's Bogey or Par

The Chemo Course is a hard one, made harder by the type of drug used, and how it is used. Every treatment I have had til now has been in "fractionated" doses. What that means is that I have received only a portion of the total treatment at a time. It is supposed to be easier on the body.

Well. This time, that option is not available. I really can't function. It reminds me of my first chemo treatment ever. I slept for a nearly solid 2 days. It was better than trying to be awake, and feeling miserable.

Fortunately, I was able to sleep. There were other times, though, I felt miserable, and could not sleep. If given an option, I'd certainly take the one I have. But it all freaking sucks. 

I haven't eaten much, either, as I am having major constipation issues - even after "encouragement." I don't dare block up my insides more - although I hardly have an appetite at the moment. But feel nauseous. Winning combination, I tell ya.

I could barely climb the stairs earlier. It took everything I had, and a fairly long time to accomplish. Falling back into bed was so incredibly welcome.

I probably need to eat, but am in no position to cook, or drive. It makes the difficult even more so. I wasn't really prepared for this once a month thing. It also doesn't help that the thing that is supposed to help with the bone pain ain't really working, or if it is, not as well as I remember it working.

I am grateful I have some a Recharge drink on hand. It is something I can just grab. I can barely stand right now. It was suggested I make my own electrolyte drink. It would be next to impossible right now - if not actually impossible.

For as much as I try to explain what I deal with, I am sure most just can't get it. Try explaining a motor vehicle to a caveman, or even to a man from the 1700s. One would be harder than the other. One likely even impossible, as there are just too many layers of things a caveman could not associate with.

I would like to think that I am communicating with someone from the 1700s, rather than cavemen. I'd like to think that those I communicate with COULD understand - at least on some level - what I am facing. I can't help but wonder if it is just too close for comfort. Who in the world would want to identify with the "dark side" of cancer treatment?

The first night after chemo I kept dreaming about a Black Hole, and the artist in me was trying to give it dimension, or was looking for dimension, or something like that. I dreamt about it most of the night. It was a very restless night.

At some point today I dreamt about a cat "who" could talk. It was awesome, as I knew where she stood, and how she wanted to be pet. I dreamt about other things and people, too, but it feels like my dreams are looping. I think I am dreaming the same stuff - more or less - while I stay asleep. Each new sleep seems to be different dreams - as long as there is some distance between the two.

I wish the dreams would actually leave me something of value. I just feel drugged up, and only remember bits. As it is, my eyes are wanting to close again. I think I am going to let them.

I really hope tomorrow is a better day...but given how I currently feel, it would be honest to say I have a question about what the day will bring. I will definitely be able to answer this blog's title tomorrow.

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Friday, June 19, 2015

Pink Punch

She intended to get up at 4:00. The alarm kept being snoozed until almost 5. It was very hard to get up, knowing she was about to begin a new type of chemo. It would be the 6th in just over 3 years. 

Two of the chemos she had allergic reactions to. They were the "heavy hitters" when it came to ovarian cancer treatment, but they were also the kind that could have killed her, had she not been treated properly when the red blotchy, first signs of an allergy showed up during treatment.

The first of the two ended unceremoniously, and a replacement was utilized. The second, however, must not have been caught fast enough. She wound up in the hospital for what turned out to be three days.

What made matters more miserable was the height of chemos awfulness was on a day she would have to travel. She was nauseous, and bathroom issues were all too present.

She had been on edge since her last scan that showed not only less than desirable news, but surprised her with the news that, apparently, the chemo she was on was no longer seeming to work the way it needed to.

Limited options just got more so. 

She went home thinking about the many things she wanted to accomplish in the next two weeks. There was a myriad and many things that hadn't really been touched the previous 4 months of being in treatment.

To not handle them then would mean they would still be a wreck for another several months. It was awful enough, as it was.

The pressure was on. In some ways, it was self-unflicted, but still a bit necessary. Things had to be done. If not, it would only become more troublesome.

Even still. Some things still lingered as she struggled to get up and pack and get ready. It might be one of the last times she might have that luxury.

While the last chemo mostly let her keep her hair, the next one sounded dubious. And no hair meant no eyebrows or eyelashes, and even paler skin.

It meant even if she wanted to go without make-up, she couldn't. It meant the necessity for more time to get ready. It likely meant a wig.

This all was in the background of her consciousness as she struggled.

Thankfully packing wasn't too much of a deal. She had already mostly figured out what she needed. She was all ready to go even before 6:30, the time she planned to leave.

She needed to catch an 8:10 train in DC, and arrived with 20 minutes to spare. As she went to board, she realized her ticket had the wrong train time. For some odd reason, she had been scheduled for an earlier train she could never had made.

She called the people who scheduled the train, and hoped to somehow make the 8:10, given the time she was due for a test. As she sat by the gate, and the clock ticked, she ran out of luck.

The best she could now do was an 8:40 train, which turned out to be about 20 minutes late. She made phone calls trying to make sure she'd make this train, and others to say she'd be late.

Not the best way to start the day.

And this was all on top of the fact that someone who said they'd come cancelled at the last minute. She was feeling emotional, and had wanted the company. It wasn't usual to want it, but this time was an exception. 

She was on edge.

She knew it, and was hanging by something of a thread. She just didn't know how frayed it was until she sat down to talk to a friend on the phone once she was at the treatment center.

There really wasn't a good private place to speak, but she found a quiet hallway to sit. Somewhere in the midst of the conversation she started to cry. Then sob. She tried to hold on to it somewhat given that she didn't want to wail so publicly. She put her hands over her face, as tears streamed down her face.

Person after person came up to her. Many offered tissues. Many offered the opportunity for some comfort, but she waved them off, and said she was in the phone. 

It some ways, it was wonderful. In some ways, it was annoying. She guessed there may have been a total of 10-12 familiar and unfamiliar faces.

The time for her appointment was coming, so she had to start walking. She was already late, but did not care. As she got on the elevator, yet another expressed concern. But she kept talking to her friend on the phone. No details, as she was not alone. Just the fact that she was now on the elevator. 

When she got to her floor, she turned right - away from the direction she needed to go. She really started to sob.

As she walked, she was up against the wall. She felt as though her legs might buckle. She hoped no one was really around to hear, or spot her.

At the end of the hallway, she found an isolated room with a number of computers. The glass looked thick; maybe it was a safe place to sob, and let go.

It is not that she did not appreciate the concern of others. It was just that there was really nothing they could do, and she was already talking to the best person she could at the time.

Eventually she somewhat pulled herself together, and started walking toward her appointment. She managed to get through what she needed to, with a slight bump in the road.

As she spoke with one of her docs, and expressed what had happened, and all the tears that had been shed, the doc expressed that she seemed strong in the moment. Part of it was probably the huge release she had, and another part might have been the huge relief that a concern that had popped up the day before probably wasn't anything as awful as it could seem to be.

She eventually got to the infusion area where the chemo magic happens. Her stomach was quite unhappy. But she so wanted to eat, so she tried.

The medications made her sleepy, but not before a nurse pointed out that the chemo had a color so that she would not be surprised if her urine would turn that color.

Probably it was smart, as the color had a red-ish tint. For it to show up without warning, it might have seemed scary and/or like blood.

She, lover of colors that she was, noticed it was a beautiful pink
punch color.  She told herself she was being "infused with love."

By the time she found herself at a bed, it did not take much to fall asleep - even with a light and the TV on. Not a usual thing for her.

Except for the fact that she woke up baking - and extremely sweaty, she mostly slept through the night. When she woke up, she stumbled to the bathroom. Her balance, not surprisingly, challenged.

It was hard to get going for the day. But, by the time she did, she felt infinitely better than the day before.

It must have been that combination of Emotional and Pink Punch.

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And so it begins...again

I had quite a day yesterday. Most everything went in a different way than planned. The "good" news? Apparently my heart is in in good shape. I had to have an Echocardiogram because of the newest chemo we are using. (In short, people call it an "Echo.")

At the moment, I am laying in bed. Hard to move. Want to, and will have to, but body isn't so thrilled about the prospect.

Last night I dreamt about someone who said nice things to me face. But someone they apparently did not know me was told negative things about me by them. Funny thing was that the person was trying to find "proof" to show in a Bible-like book. 

In a different dream, another person told me how she handled times after chemo. I am not sure how realistic it was, and I am not sure it was or "good" thing, as it seemed forced, and possibly taking energy that could be used other ways. I also wasn't sure why the person was telling me what they were.


I have been up and moving a bit. Feeling kinda crappy, but not as badly when I first woke up. I took an antihistmaine, as they are going to give me a shot for my white blood cells today. The pill is to prevent horrid bone pain that can result. I hate the pill, but I hate the pain much, much - much more.


The above image is based on a small 4x4 painting, available for a donation. I can get you a pic of the original, as it does vary a bit from what you see. My art is available a myriad of ways. If interested, please contact me. I need to sustain myself financially, so please do not refrain in the interest of "not bothering me." You can also see others at Facebook.com/cedonaah thank you

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Wednesday, June 17, 2015

It is too freaking early

Ever since around 7:30 this morning there has been a lot of noise outside. Apparently, noise is allowed after 7 am. Yup. I looked. I guess they figure most people have to at least be up by then, if not already gone for work.

But what about those who don't that schedule? I guess they're just out of luck.

I am really tired. If I didn't have so much to do, I wouldn't think twice about going back to sleep. That is, if I could somehow sleep through the noise.

This sucks.

Tuesday, June 16, 2015

Chicken Soup

Chicken Soup is one of the easiest things in the world to make - and it just wore me out. To be fair, it is labor intensive. Although I have learned how to make it easier on myself by not cutting up the vegetables.

For a long time I did not even try to make it because I thought it was hard to make it taste good. I had also had a similar experience with white rice. I grew up on 5-minute rice, and I heard stories about how hard it was to make rice "right." 

I actually have to laugh now at how silly that all was, and yet it was my truth for many years. I would bake bagels from scratch, but couldn't make long-grain rice or a basic chicken soup.

To be a bit fair about the chicken soup, I grew up with cooking that rarely used spices. I didn't really know how to use them. I am getting better, but that is definitely a place I could learn a lot more. 

Part of what I think makes the soup is the seasoning, and only in the last few years have I come upon a mixture of spices that works really well. I think it is the cherry on the top of the soup.

Yup. Kinda gross sounding, isn't it? But ya know what I mean. I really think it is what really makes it what it is. Had I been making soup before that showed up, maybe I would never have tried it in the recipe. So maybe I made it for the first time at the right time. 

Although, as I think about it, I am not sure my first attempts at soup included it.

Guess I have to come up with another reason why a significant delay made it the "right" time when it happened. Lol. 

I am making it because I especially like to have it in hand when I am chemo-tizing. It is not only one of the easiest things to make (pull out of freezer and heat up), I can add an egg for homemade egg drop soup and some protein. It is also one of the easiest things on a stomach that has been in the chemo-zone as much as it has.

If you don't know, chemo often acts on the cells that are the ones that grow the fastest - like hair. Stomach and digestive cells are included on that, so it can mess with digestion - and the enjoyment of food - in a big way. It really sucks. And the more chemo I have had, the more I exoerience in this regard.

When I am "away" from chemo I try to make things like this so that they are ready to go, if I need them. I have debated about making some bread, too. But I am running out of time and steam, and still have some really pressing things that need to get done.

I have wanted to have a free cleaning service for those dealing with cancer to come, but it isn't something my friend feels all that comfortable about. To  be fair, he doesn't know all the details, but given his initial discomfort, I haven't pursued it.

It would really be helpful, though. It is really hard to do things, and often things don't get done - that really should get done.

I guess it is at least a good thing that I can get done what I do. And I am really appreciating the smell of the soup wafting through the house right now. Yum.

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"You just have to give a damn"

I just got done reading about a bunch of chefs who want to make good, healthy fast food that is also reasonably priced. https://www.yahoo.com/news/inside-locol--fast-food-for-the-day-after-tomorrow-000353697.html

The very last part is a quote from one of them. He is replying to the idea that many consider what they want to do as dubious. After all, isn't fast food what it is out of necessity?

His response? "Choi grins. 'It's not impossible,' he says. 'You just have to give a damn.'"

It makes me think about conversations I have had with a few recently. There is so much we take for granted that really sucks. Some would say it is "impossible" for things to be any different than they are.

What if the only difference between it being what it is and being something better is "giving a damn?" What if it really is that simple? 

Of course, the idea itself may be simple, but the implementation? Maybe not so much. Maybe that is why you really need to give a damn - because it will take something from you to make it happen. You will have to see things differently, and go against not only the prevailing tide, but also against all of those who think it cannot be done.

If you don't give a damn, that is way too much to ask, but if you do, who knows what could be possible?

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Monday, June 15, 2015

The more I think about it...

The more I think about something I wrote yesterday, the more amazed I am that I never really thought about it before. The more amazed I am that I do not remember ever hearing anyone saying anything like it.

It really seems so darn obvious to me now, I am fairly certain that we as human beings are incredibly adept at preserving the things we believe, and our judgments, by utilizing incredibly effective blind spots.

I imagine with some things it could be a good thing. But there would be times I would find the "good" part dubious.

What thing am I talking about? It is the realization that we will tell other people we have "no idea what you are going through" only to sit back and judge them as they deal with it.

How can we think that is Ok, unless we have a blind spot? If we have no idea what a person is dealing with, how in the world are we equipped in any way to judge a person in relation to something we have no clue about?

And yet? We do it ALL the time because we base our judgments on the things we THINK we know.

I have been thinking I want to write a blog post about the things we believe. It would seem there needs to be a level of agreement that is reinforced over time for us to come to some "absolute" conclusion.

If we weren't willing to agree, there might be chaos. As a matter of fact, those who do not agree do actually create a form of chaos - which likely furthers the "need" for more agreement. It is the mistaken belief/agreement that chaos is avoided by agreement.

We will fight to the death for our agreements. The death. At the same time, our agreements can bring about a form of death.

Many times we will not see how faulty or ineffective something is until we are immediately affected - or punished - or inconvenienced by it. But everyone around you will still not understand why you feel as you do, and will still feel as though you are still living within the same agreement parameters. And whether you are, or not, won't matter. They will treat you as though you are. You can't get away that easily.

Earlier today I was talking to a friend about what might be unfolding. It would be most unfortunate and inconvenient for him. I was upset about it only to get a "That's Life" comment. "That's how people are." I realize there are times that I am very much an idealist about things. I very much want people to actually THINK about what they are saying and doing and how they may be affecting others. And, even further, I want them to be more mindful of the potential repercussions and protective of those they impact.

I know it may sound "silly" and maybe even naive. But...why does it have to be that way? Why do we have to shrug our shoulders as we just pessimistically speak of the negativity of the world, and those in it? Why do we have to act as though it is inevitable and likely and that people are jealous assholes that just want everything and will do anything to get it.

Apparently if we don't believe that, and we don't occasionally compromise ourselves to that "standard," we are not living in the "real" world. I just have a really hard time buying that - even though I have been exposed to a great deal of crappiness and crappy behavior in my life.

Having not been in the "traditional" work world for many years now, I have been able to be somewhat removed from the crap - at least in one arena. Although, I still found myself messing with the mess that is human nature and what can be its pettiness. I suppose it is easier from outside of something to talk about it than when undesirably immersed in it. I really felt helpless in some of my crappiest jobs.

It feels like I might be getting off track. But I think what ties this all together is the idea that we often speak to things we probably have no ability to. I think we do things with others that we would never want done to us. I think we have the ability to be pretty crappy human beings.

But I also think - and have to hope and believe - that we can also be pretty amazing, too. Just not really sure how that happens. But I sure do wish I could have me some more of it, more often.


PS This is my first blog post after my announcement on Facebook that I am taking a "break." I will be on and off until the end of the day, but then I plan to be done. This blog will be the "official" place to find out what is going on with me. If you'd like to subscribe to my posts, just enter your email address at this link http://feeds.feedburner.com/blogspot/VVPeD or here https://feedburner.google.com/fb/a/mailverify?uri=blogspot/VVPeD

Sunday, June 14, 2015

Thank You

I have spoken many times about the whole "thank you" issue. But it has come up yet again, so I feel like there is more to say.

In short, and if you do not want to read all that follows, if you give someone money/help, I highly recommend/suggest that you do it WITHOUT CONDITION OR EXPECTATION. Do not even "expect" a reply, or a thank you.

If you want to know why, please read on.

So today someone tells me we are taught as a child to say thank you. To them, it is a big - BIG - deal. When I tell this person that there are some who have given, expecting nothing in return, I get told that if I had thanked them, perhaps they would gave helped more. Not the first time I have heard this "gem."

Many would call this kind of statement, "helpful."  To me it is a guise of helpful, but more like placing blame on me for my circumstances for my apparent rudeness and also rubbing salt in an already raw wound.

And here is why...

In the best of all possible worlds, gratitude and thank yous are wonderful things. But even in the best of all possible worlds, things do not always go the way we like the to. Things are missed or forgotten.

Now, if you have someone who is not currently residing in one of these Best of All Possible Worlds, all bets should be off. Instead, we seem to shine a spotlight and say, "See?! See?! THIS is why you and your life suck. You are just so rude." 

Now, never mind the fact that the playing field at that moment is not equal, it really could be a whole different field. It is very difficult in a crisis to focus on anything other than the crisis. Heaven forbid in the midst of a crisis you need to also reach out for help.

You are then having to not only manage the details of the crisis, you have to handle your daily life affairs, and now you have to make sure you do good PR for the help you need and publicly ask for.

If a person in that type of circumstance has someone who can handle the details, great. But even then, it can be a big - and sizable - stress for that person, too. And it often goes unacknowledged because many do not consider all that must be dealt with in circumstances like those.

But if a person is in that type of experience, and has to manage to deal with EVERY-freaking-thing alone, it gets even more complicated. It is even worse when it is a physical situation that impairs. So not only are they possibly in pain, they are having to contend with a host of issues that demand to be addressed. In a case where chemo is involved, good luck with the whole memory thing - on top of everything else. A memory thing, by the way, you can explain until you are blue in the face, but many do not fully understand - if at all.

People tell me they have no idea what I am going through, but then feel they have a right to judge how I am going through it.

I told this person today that it is difficult to be judged, and found lacking - especially when I am all too acutely aware of how much I do lack.

If you give, give with love. Consider the gratitude as the cherry on top. I am not advocating that we shouldn't say thank you, but rather that whether it is said, or not, should not be a pivotal judgment point - especially in cases in which people are dealing with major issues.  
I have done my best to try to thank people for what they have done. I am hardly perfect, but I am also not the ungrateful, horrible person some want to paint me out to be, either.

Thank you, as always, to all who have supported me during this time. I could not have gotten this far without you. If I missed thanking you, please know it was hardly intentional. Many more things than I would like get missed.

Saturday, June 13, 2015

I realized something today...

I have talked before about how I hope that before I leave this life I know what it feels like to be treated like a priority in someone's life. Most of my life I have been #2, or even lower on people's totem poles. I think I now know why it is such a big deal for me, and why it bothers me so much. 

I was never the priority in the life of my parents. My mother would say otherwise, perhaps, having told me that she was convinced by my Family Powers That Be that it would be in my best interest to be raised by my grandparents. 

Perhaps they were right. I don't know. There is so much messed up stuff that comes with that, though. So much. I grew up thinking my parents didn't want me. It was nothing I verbalized that way, but they weren't in the picture, so what else could I imagine for myself? Why couldn't I have a mommy and daddy like "everyone" else did? 

I loved my grandparents. I really did. But today I find myself wondering if I took on the "good girl" persona just so I wouldn't be "abandoned" again. I had to be good, so I would be liked, and taken care of. That is such shit for a little kid to deal with. I even felt "responsible" for things that, as a kid, I should not have had to think about.

For a time, for many times in my life actually, I wanted nothing to do with my mother. Who was she, besides someone who gave me birth? I was brain-washed so well by my family.

The irony is that my mother is the only one still alive, and I HAVE NO CLUE HOW TO HAVE A RELATIONSHIP WITH HER. I feel like she should take the lead, given she is my parent, but quite frankly have no clue what that looks like. We have spent some time together in recent months, but I really think we have no clue how to relate. 

I have been having a hard time initiating contact with her because a part of me is angry. I am not exactly sure who or what I am angry about - or with - but the anger certainly includes her - even if "just" indirectly. I couldn't tell her what I thought, so I wrote her a letter. 

Previous letters written when I was much younger, and a lot less self-aware - I think - were different. I'd like to think I just said what is so FOR ME. I'd like to think I did not point a finger, but made points. I'd like to think it helped me sort out some stuff I hadn't really been in touch with before. Amazing to have perspectives never before considered.

She also gets the brunt of what I feel because my father died a long time ago. As it was, I barely even knew the man. Only in my early teens did I find out that this man who lived in a different state, with a different family, that I called, "uncle" was my father. I never really got to process things well enough to really get to know him and/or confront him, and/or ask his side of the story. Given what I do know of him now, I would have to say he was a pretty selfish bastard.

Funny. Never thought of him that strongly before. But, yup. A selfish, self-serving, pleasure-seeking bastard. How is that for some judgment? 

The anger is pouring forth. I am really not doing well tonight, and it is for other reasons, too. Not the least of which is that I am having all kinds of pains, and am in all kinds of discomfort. I really wish it would stop. I need desperately to get off this ride, without dying first. 

Days like today make me wonder what I could do to get off. I am in the deepest pain right now. It kinda, sorta, came out of no where. But not really. It is just that there are too many things I am dealing with on the verge of chemo that a part of me just doesn't want.

In some ways, it makes perfect sense. But just because it makes sense doesn't mean somehow I can handle it, or that everything is Ok. The fact is that nothing feels ok at the moment.


Is it "true?" No. But since when does truth have to matter? 

The fact that it feels true is enough for me to have me feeling like I am breaking apart. And physically I hurt so much, and can't seem to get comfortable, or stop the pain. I am actually considering asking for pain medicine, which is not like me at all. I am hoping that of the mind and body are connected, experiencing this emotional pain will somehow unravel the physical pain. The physical pain makes everything that much harder to deal with.

I kinda just want to tell everyone to go to hell - even those who have done absolutely nothing to warrant it. I just want to scream. I just want to yell. I just want to take a huge leap off a cliff.

Sorry for that last sentence. But it is my immediate truth; however laying in my bed in pain, and the fact that I am not going anywhere will preclude that from happening. I think I am too much of a coward to do that any way.

If I was home alone, I'd probably be screaming right now. But if I did that, I'd probably scare my friend in more ways than one. He has no real clue of what I am going through, and there are reasons for that. If you have someone close who seems to be doing "just fine," they may not be as fine as you might think. They may have their reasons for keeping their truth from you. I tell you this not to upset your apple cart, but rather, if you care about someone you might just want to know their truth. Their REAL truth.