Friday, February 27, 2015

A Day of...

Well. Today started out sucky. I woke up later than I wanted to, after falling asleep later than I needed to, waking up to a pounding heart. I felt anxious, angry. I spent time making myself up that I did not have in an attempt to give myself better feelings that I did not have. My wig got caught on my jewelry and my bra. The train I caught was disabled about 5 stops from where I had to be. My blood pressure was high.,,

Had my day ended there, I would have most certainly have said it was a horrid day. My mood from last night felt worse this morning, and as illogical as it was in some ways, it still was.

But then, I met with someone who gifted me a package from Lisa's Army. The person was told she could give it to two people, and I was one she immediately thought of! I made a quick video to share what was given...oops on the vertical filming and abrupt end, but oh well.

I was also gifted a couple of bottles of supplements from someone else. With the way things are going, maybe I should play the lottery. While none of this is solving my much greater issues snd concerns, I feel like it is trying to tell me something. I just wish it would connect the dots for me, and give me the explanation in "dummy speak" so I could give my worrier a break :p.

There is undoubtedly more I could say about this, but I have already pushed more than I should have. I feel nauseous, and I need sleep. I also kind of know if I did not do this now, I might lose the opportunity/forget.

So, here it is - in all its imperfect glory. Here is the link to the video, if you are interested: 

Good Night.

Ps And...if you have not yet seen Patreon.com/jolope, please check it out, and consider supporting me for only $1 per month. Thank you.

Thursday, February 26, 2015

Isn't it Interesting...

Isn't it interesting how people say they want people to be genuine, and not fake, and yet it is accepted "fact" that most people are not who they say they are? So that when one interacts with another who is truly being honest and forthcoming about who they are, they are treated as though they are being someone they're not. It seems to be one of those things we turn a blind eye to - until it is something we are affected by. But until then, well, you know...

Wednesday, February 25, 2015

A Perspective Serves a Purpose

Most of my life I tried not to make waves. Most of my life I tried to be "invisible." Most of my life I tried to say and do and be the "right" thing. 

As a result, I rarely got to truly be myself. I wound up often questioning myself. 

So then cancer came along, and changed everything. I found myself saying and doing things I never would have only a few years ago. 

My life has been turned on its head. 

As a result, I now say a lot more, a lot more openly, and find that people often respond to things I say, but not always in agreement. Often, actually, in disagreement for what they think I am saying.

There are times their comments address the phantoms they think they see in what I say. I bet they always did that, even before cancer, and it was at least partially the reason I kept mostly silent.

The difference back then was that I wasn't clear enough about myself to see what was happening. I would be caught in a storm, headed out to sea, and feel wrong, or helpless to be able to combat what was happening. It would look nothing like it started out to be, but I had no idea how it got where it got to - or how to even get back to anything even remotely close.

The easiest thing to do was to try to avoid situations like those. Inevitably, though, there was just no way to do that, and my avoidance created other issues.

There are times when I feel misunderstood that I feel like I should address what is said. The problem is that there are times others are determined to see whatever it is that they do. No matter what I say, it will only fan their perspective. 

I even try to proactively address what I think people will say, but oddly enough, what I say doesn't seem to register. They only hear everything else I said that they disagree with.

This is something that I am now clear happens with great regularity. And it is not just my experience. 

How often do you silence yourself? How often are you misunderstood? How often do you compromise a piece of yourself by "allowing" others to steer the ship?

I am fairly certain that most who read this would know exactly what I am talking about, and yet, without even realizing or recognizing it, be the one who does this same thing to another. 

It sometimes takes an effort to be able to hear another in the way they want to be heard. People are quick to jump on things that aren't even present.

A perspective serves a purpose. If you are hearing something in a certain way or experiencing something in a certain way, it is serving a purpose. It is fueling some part of you.

Is it "right" or "wrong?" I must be saying that it is one, or the other, right? Otherwise why bring it up?

I struggle with this stuff because I think there is value in the conversation. I am just not sure what the conversation is.

When in the midst of something, it is very much a part of you. What is, and who you are are not only seemingly one, there is often nothing prompting an awareness that you can be separate from what you believe. In that moment, you will fight for the belief you have, as you would for your life itself. Because in that moment, without that distinction, or an awareness of that distinction, it IS life itself. To threaten a belief you have, is to threaten you.

How in the world do we interact with those who feel threatened? We try to allay their fears by telling them that what they fear does not exist. That doesn't work terribly well, does it?

It doesn't help that while they are defending their beliefs, it can feel like our own are threatened. It is a cycle that gets no one anywhere pretty darn fast.

If we could stop thinking of the world as "right" or "wrong," if we could stop thinking about everything in an either/or context, and started to consider things in an "and" kind of way, maybe we would be better able to interact with each other, and more often we would see similarities  than perceived differences. As a result, we might be more empathic and understanding and do better at truly relating.

When I share stuff, I would like to think I am sharing some helpful perspective. Instead it is often treated like I am defending an idea and/or saying other perspectives and ideas are wrong.

I am sharing my experience in the hope that there may be some value for others in a perspective they may not have considered. I often share the whole of my experience, which can often include the not so pretty parts. 

I show how I can be two seemingly contradictory things simultaneously, while there would be those who would want me to only be in the Positive Camp. It is not realistic, and I think most who think that is the only place to be know that it is a more realistic desire than reality. 

I could be wrong, but I think contradicting what feels real can cause more problems than help at times. It is a form of self-denial, and what good can come out of us continuing to deny ourselves of our perceptions?

So where does this fit in when it comes to our interactions with others? I think as long as there is an "and" undercurrent to the conversation it can work. But if your response is to defend an opinion, or because you think the other person is wrong, I suspect there will be times almost everyone involved will be going down a track no one really wants to go. And instead of getting somewhere, there will likely be a derailment and train wreck along the way.    

I don't know about you, but I would rather try to figure out how to avoid the wreck, than be in it. That is why I think about these things, and share about them - even in "imperfect" form.
If we wait for the "perfect" approach, there will never even be an approach. If we sit back and do nothing, nothing will change. If we remain silent, the only sounds we hear will only be those of others.

I may be less than perfect, but my times of sitting back are over as I want to hear my voice now. I realize that my voice won't work for everyone, and at times  even inspire the opposite effect of what I would hope for, but I now see that is more about the other person than myself.

I also see how a defense for a perspective that isn't valid in another person's eyes can become all the more reason for the person on the offense to believe they have support for why they think what they do.

I am sitting here, thinking about all the different pieces to this conversation. I know I will never "win" when it comes to things like this. I can already hear some of the things people could say to what I have said.

I will gently remind you about that AND thing above. I am not saying these things to say one thing OR another. Saying what I have said does not preclude something I haven't said.

It is difficult - if not impossible - to cover all bases. And yet, there are times we think that not only should all bases be covered, they should be tied up in a neat, little bow.

When will we stop thinking that these unrealistic ideas that we have about how we - or things - should be is the "norm" or what we should aspire to? If we are doing it to be empowered, we are only sabotaging ourselves in this Empowerment Game.

Want to feel empowered? There is nothing more empowering than acknowledging, and claiming, all that makes us human. I know. It may be a hard pill to swallow, as we have been taught otherwise. 

If you want to feel empowered, though, try it. I think you will really be amazed at the power you retain when you aren't fighting what is, when you aren't fighting the feeling you aren't enough, when you aren't fighting the idea that you are not in some way good enough.

Try it. You might like it.


No where even close

Language. It is a "funny" thing. I saw a headline, "Every movie and TV show being removed from Netflix in March." 

What does that sound like to you? It sounded really strange to me. Every movie and TV show is being removed from Netflix? Huh? 

Well. It turns out to be a list of removals, which isn't every thing on Netflix. Of course, the writer knew what they meant, but it came off in a way that has a whole different meaning - very much in the same way that many of our communications do. 

Not only does language vary, but so does the meaning read into the language. Is it any wonder we are able to truly connect at times? How often do we think we understand each other, but are no where even close? 

Ps Have you seen Patreon.com/jolope? If not, please take a moment to check it out. Thank you.

Tuesday, February 24, 2015

I Get That People Want to Help

Laying in bed. Nauseous. Stomach cramps. You know; the good stuff :p I get a text about an organization that I have known about since practically Day 1 of diagnosis. 

It doesn't help how I feel. 

Often when a new person shows up in my picture they try to be helpful. They come to me with pretty much the things I already know about that aren't helpful. They are the same things that others - many others - have also found previously - and offered as a way to "help." 

I get that people want to help. I do. It is just really hard to have to keep repeating myself. If you had been dealing with something almost 3 years, might you have not already investigated appropriate options? In that time, might not someone else have already travelled that same Google Route you did? 

There is the theory that things "can't hurt," especially if they are done with love and good intention. I am not sure I agree. Having to interact with the same stuff over and over takes a toll. Having to respond takes a toll. Being considered rude or ungrateful with no reply, or a reply taken in a not so good way takes a toll. 

I share this not only for my sake, but for others you may interact with along the way. Someone who has dealt with something major for any length of time is likely to be an expert in it. 

Odds are you are doing more to make yourself feel better than helping them, especially if your offer is of the information category. You can potentially save yourself time and effort asking the person what they need, or what would benefit them at this time, and acting on that. 

I often feel like I wind up telling people they wasted their time. I don't say it like that; but it is pretty much what it amounts to. 

I am grateful people take the time and are willing to make an effort, but - depending on what it is, and what it is about -  is may not be the  kind of effort that is likely to have the best return these days - for either of us.

Ps want to help? Got a $1? Patreon.com/jolope can help you help me. Thank you.

Monday, February 23, 2015

Seeing Parallels

Patricia Arquette is making waves today for her Oscar speech. Some think her beyond bold for the things she said.

I can't help but think about how we as humans could relate more, if we weren't so busy measuring things. I realize there are some who would think me out of touch, to even suggest this possibility. Obviously the things that some relate are not relateable, right?

As long as we believe that, I think we have less of a chance of being empathic with one another. I am not sure how to moderate that, though, against the idea that there are some who will feel in some way not understood or disregarded or minimized by things compared that do not seem to fit.

A part of me goes to the idea that I discussed recently - that it is fairly difficult - if not impossible - to say all that needs to be said in a soundbite. And, yet, we do try. We try desperately at times.

Sometimes to be heard, a message needs to come in a way that is out of context, in a forum that is unexpected. In that sense, what she did was ideal. It got all kinds of people talking, and paying attention.

Is there a way that we could start looking for bottom-line similarities, instead of seeking to show just how much another must not understand us by the fact that the measurements do not equate?

It is a dual-edged sword. Labelling can just as easily unite and divide us.

Think about the Olympics. The team labelled "USA" is united, and the team labelled "Spain" is united. However, by the virtue of having two different labels, the people of those teams are divided from one another, even though they are very likely going through similar training, and have similar aspirations and hopes. 

They could root for each other as human beings in the same, or similar, circumstance, but that idea is potentially at odds with the competitive, measuring nature the labels set up - even within a team when there are labels like Gold, Silver, and Bronze.

I suspect if we want to get along as a community, we need to go beyond the surface of the labels, and have an experience of relating to another that transcends our pain and disappointments.

It certainly is not likely to be the easiest task. Blaming, and being pissed, and other things, often seem much easier than taking a step back to look more deeply. It certainly is the route of least resistance for many of our emotions.

I am not sure what "the" answer is...but I think if we look for opportunities to be empathic, and look more for what we have in common, we might just be closer than we think - in more ways than one.

Just One.

Yesterday I saw something that showed $17 PER DAY regarding food. Starbucks. Lunch. Snacks. I remember that daily "cost" as a 9-5 person - although it probably wasn't quite that much when I was doing my jobs.

However, it made me think about how I am asking just $1 PER MONTH from people - especially - who say they care about me. 


It seems crazy to me that I am unable to get that kind of support - especially since people say they care about me, and because there are all kinds of things I create that people say they like and appreciate. I have also said more than once that if someone wants something for their donation, let's figure out what it can be.

I need help. I need more help than I want to need. I need more help than silence allows me.

I just don't understand why some help as much as they have, and others have remained in a semi-permanent shrug when it comes to my situation. 

The other day I received 2 cards in the mail. They both had $2 in them. You should have seen my smile. I love - and appreciate - when people get how significant they can be in what might seem to be insignificant.

I also saw something a bit ago from someone who is Christian who said that he sometimes thinks people use the idea of prayer as an "excuse not to act." I will always take prayer and good thoughts, however, bills must be paid, and I have expenses that need money to be satisfied. You wouldn't be able to take care of yourself on the prayers of others alone, and neither can I.

Someone needs to act. 

I just ask that that someone be you. I wouldn't be asking if I didn't need you. But after dealing with cancer almost 3 years now, my need is the greatest it has ever been.

Just $1 per month, please? patreon.com/jolope

Thank you.

Sunday, February 22, 2015

Too Long to Read

I just saw a posting that was more than a couple of paragraphs. People commented on how it was "too long to read." Someone joked they were 16 when they started to read it, 61 when they finished it. (It wasn't THAT long...the most they could have been was 35! :p)

I see things like this, and am reminded how many times people have made comments about the length of my writing. I have even been told that the length means I am not respecting people's time.

On the other side of things, though, there are those who will actually take the time to read something of mine, and find themselves drawn in, and appreciative of what they have read.

Often there is usually a minimum of 2 sides or opinions on things. A minimum. Which side is "right" is determined by the side one is standing on as they cast their opinions on to others.

I can't write for all people, and I won't even try. Will everyone read what I write? No. Will everyone want to? I don't even care.

Of course of those things *I* consider important, would I like for people to take the time to pay attention, consider my words, and potentially alter their path? Absolutely. Who doesn't?

I have always been a person who likes to read. I have been an avid reader most of my life. I have owned countless books. I have spent the equivalent of months - maybe years - lost in them. 

I have never minded reading something at length, if it was a topic that interested me. I sometimes wonder if people can read longer things, if the topic is of interest, or if in general short attention spans are even changing that.

For as much as I wish we could communicate things in just a few words, many times it takes more to truly convey a message. Many times the brevity of a thought only winds up complicating things, and causes more tension and argument. It can also have the potential to lead to shallow assessments and determinations.

This is not to say Long Form is better, as even in Long Form there are issues. However, I think we might just losing sight of some of the value of alternatives by relating brevity to value in some way. 

Perhaps things can be edited, and their length shortened. However, sometimes it is just better to get something out in a less than ideal form than to not get it out at all. For many, the pursit of perfect will inhibit their ability to do or say much of anything.

I don't know about you, but I think the best indicator I have for things in life is my gut. Logic and gut do not always agree. Logic could say something would not be of  interest, but gut would pull me in any way. Turns out it is often a good thing I did not listen solely to logic's reasoning.

I think/believe in the world in which we live we need more of our gut helping to help us make determinations. When we listen to logic, and logic gets overwhelmed, we shut down, or are too quick to make choices that won't always serve us, or those around us.

I often think if we used our gut we would know who to help, and when to help. We would know what to do, and when to do it. We wouldn't need others telling us which criteria to live our lives by. 

We would feel a lot less conflicted. A lot less torn. Guilty. Angry. At least, that has been my experience. I am more internally peaceful when I am listening to my gut. It isn't always easy, and there is sometimes a lot of outside feedback that isn't always welcome or valuable, but it is always gonna be there in some form or fashion, any way (that 2 opinion/side thing). The difference is I am less likely to be battling myself, too.

Ps if you find my work interesting/helpful, please become a patron. You can do it for as little as $1 per month. It will help me help myself financially survive desking with cancer. You may not think it much, but it can make a huge difference. Pretty please? Patreon.com/jolope

Saturday, February 21, 2015

A Guy Thing

A few weeks back, I was waiting for a train. I was wearing a purple wig, and had make-up on, and was feeling pretty good.

For the first time in a long time, a guy expressed an interest in me. As we spoke, the "perfect" opportunity came up for me to be candid about my situation. I debated. I asked him if he really wanted to know what I might say.

He said yes, probably not expecting what was going to be said. Funny thing was that he did not run after I told him about the "c" word. I wondered if that might mean something. I decided to make a big leap, giving him a card, and a way to contact me, if he wanted to (and it seemed he may have wanted to).

I thought about writing about it back then, but did not want to make him any more uncomfortable than he may have been, had he shown up here. Well. Since time has elapsed, and I have not heard from him, I figure he decided he must not be interested. Either that, or he lost my card.

I tend to think it more the former, though. It would take someone pretty special to be willing to jump into these waters with me at this point. I imagine many would want nothing to do with it, and others would find it terrifying, if they were honest.

Oh well. For a short blip, I felt a bit normal. So often these days I just feel invisible - especially when it comes to those of the opposite sex.

Depression & Treatment

Every time I have been on chemo, I find myself struggling with a deep, dark abyss. It has been one of the biggest reasons why I have fought against being on chemo. I lose a part of myself, and it is such a huge chunk; I feel like I lose myself.

In speaking with my doctor about this, I was very open and honest about this for possibly the first time. I think I may have said things before, but never as blatantly honest. I was often concerned their solution would be more drugs, and I just was soooo not interested. 

I do not recall ever paying attention to just when I would feel as I did, in relation to the timing of treatment. I just knew I struggled, and every time I struggled, I had people trying to logically help, and it NEVER did.

As I spoke with the doctor, and went into detail, she felt that it certainly was more of an induced state that I was experiencing that was chemically created and due, possibly, not to the chemo, but the steroids that they give in an attempt to avoid any negative interactions with the chemo. 

As a result, she knocked down the steroid dose a bit, and we are going to see how I feel this go round. Part of me is more aware now of what is happening, and it somehow makes it easier for me to deal with. 

The problem is that if I express it, many who are a witness to it are not as Ok. The "solution" could be to shut up about it. But the reason it may not be the best solution for me is the fact that I need to express what I am feeling and enduring. It is urgent that I do. I often feel as though my life depends on it. 

I also can't help but think that the fact that I am willing to be so open and honest about this stuff might help another with what they are dealing with, and maybe give them some idea about how to deal with it, or interact with it, themselves.

I was talking to someone today who was telling me about their dislike of fish. She was telling me that over the years people have suggested that she just hasn't had it cooked right, and have said an assortment of other things. 

As I heard her speak, I said that many probably said the same thing as others, thinking that somehow their idea was original. That she probably was a bit defensive having to hear the same stuff over and over, and a few other things.

She then thought I must have had the same experience - with people and fish and seafood. Not at all. I explained it is what I have been dealing with in relation to cancer the last several years.

The human experience is often translatable to many things and experiences. We just have to be willing to make the connections.

I have been told more than once by those not dealing with cancer that they can relate to the things I say, and it seems to be helpful.

I am not sure remaining silent helps anyone - except for those who do what they can to silence others for their own comfort, or to avoid their own discomfort.

As far as my situation goes, I already am feeling a bit down tonight. While what happens isn't "logical," I have been wondering how best to interact with it, and if there is something I might be able to do when the abyss shows up. Giving into it seems to have been the only option so far, as it truly renders me unable to do a damn thing, and to give a damn about anything.

I am always so grateful when I start to come out if it. It is such an incredible relief.

Ps If you haven't seen Patron.com/jolope, please take a look. Thank you.

Friday, February 20, 2015

On Good News & Discussing Death

The last time I was at the doctor's, I spoke about the abyss. Doc was concerned: was I suicidal?

I made the comment that there was really   nothing to worry about. I wouldn't want to affect another by having them harm me. I also told her what I tell others - that I really wouldn't have to do anything; cancer would take care of "it" for me.

The doc laughed. She couldn't believe what I was saying. She knows I am different, and continues to find "support" for that in what I say, and how I say it. She also acknowledged that the laughter might be somewhat inappropriate, and voiced how often it is difficult discuss and be with "the elephant in the room:" death.

It is one thing to talk about death. It is another to talk about death in the context of cancer. According to her, the latter is much more taboo, and difficult.

I am not sure, but she didn't seem to be in the best mood when she came in the room to talk to me. I think, though, by the time we were done, I think her mood had shifted.

The good news from the visit? The chemo seems to be working. I had hopes it had done more, but I will definitely take an approximate 50% decrease in my tumor marker.

Ps have you seen Patreon.com/jolope yet? If not, please take a look. Thank you.

Thursday, February 19, 2015

Late Night Meanderings

My next chemo cycle begins. It will be 3 weeks on, and one week off. It is during the second cycle that hair loss is the most likely to occur.

After the last treatment, I am leery of how my mood may dip. I had had two treatments without a significant dive into the abyss, so the last time took me by surprise. I knew what was happening, but it did not stop it from happening, nor did it help me deal with it.

It is an awful place. It is like a dark, heavy, wet blanket. It is a place of not necessarily being able to sleep, and not necessarily being able to do anything else. And even if there was a capability to do something, there is a feeling of incredible lethargy, and lack of caring. Nothing matters, and nothing feels like it matters. As a matter of fact, death seems the most "likely" place to go. And, even worse, perhaps, it is even hard to care about being "there."

Many think this dark mood is a "place" that is a choice, and can be controlled. I suspect that someone who has ever truly been "there" would likely not be of that opinion.

Even as I knew what was happening, and why, I felt helpless to stop it. The feeling was so familiar. I have learned to "allow" the darkness, in the same way that one "allows" themselves to enter a tunnel on a trip. It is part of the path that takes you where you need to go.

I wish I could say that saying what I say and knowing what I know logically helps, but I am not sure that I can - at least not when I am in the midst of it.

As I share this, it occurs to me that there might be those who will be tempted to downplay, or in some way minimize, the reality of what happens, given its nature. "Oh, there she goes again." 

The last chemo treatments I wrote about "behind closed doors." The immediacy of my pain wasn't readily apparent publicly. The first time (the first 6 months) I went through treatment, I wasn't as aware of things as I am now. It was all new to me, and when I did share things there were times I was bombarded by well meaning, but extraordinarily unhelpful, advice. 

Being a "veteran" in this experience of cancer is helpful in some ways. Supposedly one becomes an expert at something after dealing with it 10,000 hours. Day 417 of dealing with this I became an expert. Ironically, Day 417 was Independence Day, 2013. 

Yup. I just had to figure it out. 

Independence Day. Ain't THAT something? Not sure what I think that means at the moment. But I will definitely be thinking about that "coincidence."

As of this moment, I have been dealing with cancer 1012 days or 2 years, 9 months, 6 days or 144 weeks and 4 days or approximately 87,436,800 secondsor  1,457,280 minutes or 24,288 hours.

Actually, I should probably amend it to say "consciously aware of" dealing with cancer for this period of time, as odds are I was unaware that I was dealing with it for several years. But the unaware years did not make me an expert. It was only in my interactions with it that I became one, twice over. 

I wonder how many would think that. I am guessing not many. Who would want to claim being that kind of expert? It isn't, after all, a type of recognition that anyone is likely to seek out, or even want.

Hmm. I just paused. Still pausing, actually. Guess I am wondering what I think of what I am saying, and I am not really sure, actually. 

I also am thinking about those "outside" of cancer. I think many of them would not see the "expert" thing, because they see everything about cancer and the person dealing with it as something to be fixed or managed.

Another hmm.

We usually seek out experts, and hold them in some sort of esteem. I think when it comes to someone dealing with cancer, there can often be anything but that, and often - depending on person and circumstance - there can even be disdain as the person who is already dealing with a lot dealing with cancer is judged, and judged harshly. This is certainly not the case in all circumstances, with all people, but likely happens too often, and more than you might realize.

I suspect it is an indirect, rather than direct, effect in that the seemingly negative reactions come from people's inability to deal with the emotions that arise when dealing with the idea of cancer. Their inability to deal with it can make the person dealing with it a target. Of course, it isn't a conscious thing,or anything anyone would ever want to admit to.

But just because we may not see something doesn't mean it doesn't exist. And there can be cases in which the thing we don't see we'd rather not see because it is just too painful to look at.

For some, people dealing with cancer become painful reminders of things that are hard to look at. Ignoring the person, and/or the illness, or its effects, is the easiest way to cope with something than less desirable to consider.

I am sure there will be some quick to argue against my assessments. Am I "right?"  Am I "wrong? " I doubt I am either, at least not in any kind of absolute sense. 

I suspect that what I have written is hard to read. I suspect it goes against any reality about cancer that anyone would want to believe is the case. Parts of it just sound pretty horrible to contemplate, don't they?

The thing is we all too often use discomfort as criteria for how we choose to interact with something - if we even choose to. And when it comes to things like cancer, there is discomfort to spare.

It is one of the reasons I say a lot of what I do. I tend to think we would all be greatly benefitted by a change of perception when it comes to cancer, and that is not likely going to happen while we are busy avoiding it.

PS please support my work if you appreciate my work. You can do it for as little as $1. Please see patreon.com/jolope for details on how to make a difference. Thanks.

Wednesday, February 18, 2015

In the Beginning

Little did I know when I sat in on a child's art class with Cathi, that I was going to be embarking on a whole other side of myself. 
Cathi was my last stop on my cross country trip in 2013. The day I arrived, she told me I could come to the class, and help, or take part. I seem to remember there were 3 projects. Funny thing, though, I only seem to remember two: this one above and a heart that I have come to really love that is painted on a small piece of construction paper.

I believe the canvas was the last project, which was probably a good thing, given its size. It was intimidating. But I dove in, any way. As usual, I had no idea what I was doing, but I just did it. Cathi even admitted to me at one point she wasn't sure it was going to look like much. I don't think it is quite what she said, but she was initially unimpressed.

The kids in the class, by the way, did gorgeous work. Talk about intimidating!

After I got home I splurge painted a bit. I made a lot of different things. I have come to have quite a collection. Those first ones were still kind of timid, though, as I didn't do much in the way of canvases. Previously I had done some work with oil pastels and colored pencils, and before that created visual images on the computer.

I had been moving forward, but not sure where I was going. After I was home a few months, the painting I had been doing moved into the background, as I tried other things. 

But, then, last fall when I went out to stay with friends for 6 weeks, something told me to paint. Paint every day. I knew that would be interesting, to say the least. That would be 42 new pieces of art from someone who had no idea what she was doing.

But the thing was, something told me to do it, so...I did.

And I can't tell you how glad I am that I listened. I am really enjoying expanding my horizons, and experimenting. Today I found two things that I painted, but didn't know what I was going to do with them. Now that I have come to a different place in my knowledge and play, I have an idea of where to take them that I couldn't have had when I first created them.

There are so many pieces of this painting journey that I have learned a lot from. I know I need to write them up somehow. I considered writing them in a book in which I showcase the images of those several weeks, but I just haven't gotten there yet.

I am today almost sadly, at the clearest place I am going to be for the next few weeks. I have so much I want to do, and wish I could do, but it is going to have to wait.

In some ways I have never felt so alive as I do with the creative banquet that I am in the midst of. It would be really sad to leave this place any time soon. I so hope that whatever I am doing, and thinking and listening to is somehow, some way taking me to a place that allows me to continue. 

I struggled writing that just now, for concern about how I might look at things, and how others might, too. Dying while dealing with cancer is often seen as a "failure." And I don't want to look at it that way, and I don't know that anyone else "should," either.

There is this idea that if you do things "right," or "get it" you will be healed. And, yet, there are those who aren't. Kinda sucky to be on the "aren't" side of that equation, if you belief that death is a failure.

There is zero doubt in my mind that cancer sucks. But what sucks more is everything around it: treatment, how I am treated by others, the financial issues, and the whole "goodie" bag that comes along with it. I truly could deal with cancer a lot better if it wasn't for all of those other things. 

But, here's the thing, dealing with cancer and all that comes along with it has given me myself in a way that nothing else ever did. And for that, I couldn't be more grateful. I have been so much more of myself in the last few years than I was before I was diagnosed.

I had this "vague" feeling that I was living. But I wasn't. There was always a tomorrow I couldn't seem to get to. There were always distant things that never seemed reachable, and in many ways I had kind of settled. I wasn't happy about it, but in some ways I felt like I had no choice. The years ahead weren't ones I was particularly looking forward to.

Little did I realize that I was going to have a moment in which suddenly those years were less than "guaranteed." Little did I realize I was going to wake up to the idea that I was on "borrowed time," which we all are, really. 

We just play this game of pretend. We pretend that there is a future to plan for. We pretend tomorrow will always come. We pretend death doesn't exist, or exists as something distant enough from us we don't have to think about it today. If anything, that is for "tomorrow." It is for the tomorrow after all of the tomorrows that we have that have the things we want to do, and plan to do.

I was just thinking about 20 years from now. I then switched to thinking about 20 years ago. It is odd to think about that time. It was a much different life, and it is kind of like a movie I once watched. For something that was at the time so real, it is kind of gray and fuzzy. I got kind of sad. At least the ego of mine did. If I am not here in 20 years, I may be that for some, if I am anything at all. Even sadder still for this ego of mine is that the sooner I leave this life, the farther away I will be in people's memories of me.

It is no wonder we don't think about death. The ego hates it. Life goes on for those still here. It has to, but that also means that the focus is on the things of the here and now, and not on the things as they once were. It would seem that that is the way it "should" be, after all. That is also all the more reason to live as fully as possible in the moments that we have been given. They truly are a gift, and one that we very frequently do take for granted.

There truly is no time like the present. And that is said to my soul in a way it has never been heard before. You hear words. But how often do you really, truly feel and experience them?

Knowing all of this, I still find myself frustrated. If only knowing this was the Magical Key to creating exactly what I wanted in my life right now, but it's not. If only knowing this meant that I was in some way guaranteed to have the outcome I think I want, but it's not. 

If anything, knowing all of this in some ways maddens and saddens me. What if the things I desire so much never come to pass? What if I do everything that I can do, and know to do, and am aware of, and can try, and still feel like I am coming up empty? What then?

Life is full of contradictions. On one hand we seem to be told we can be anything we want to be, and do whatever we want to do, but then for many it doesn't happen. But what does happen are a lot of judgments. What does happen is fault-finding. Often the person is found lacking in some way, maybe even labelled and found lacking for the rest of their life.

Why have we come to believe that things are only "Good" when they are a certain way? What if the crap in my life has been there for a reason? So many of the things I have experienced have been helpful for me, and helpful for perspective. I have been able to experience so much through the mess that has often been my life. 

As a child I thought it was a bad thing. Why couldn't I have a "normal" life, like everyone else? The "funny" thing is that as strange as I might be, and as strange as my life has been, it has been in many ways "normal," as I can relate to so much that others deal with. It has either made me more compassionate, and/or helped me to tap into "my" compassion, along with many other things.

I suspect we all have a much more similar experience of life than we realize, or think we do.

And with that, I think I will conclude. If I don't, who knows where the tangent could take me? I guess, as always, it needed to come out. I thought I was going to just write about the art, but the art was much more than I realized, as it became a conduit for where I just went. 

I should be used to this by now. Interestingly, perhaps, my works of art have journeys like I described. I may have an idea where to begin, but I never know where I will wind up. Just like life, I may think I know where I might be headed, but in the end it is rarely like I thought it would be, and often even better.

PS If you appreciate my work or what I write, please become a patron. You can do it for as little as $1 a month. You may not think it matters, or will make a difference, but it does, and it will. You can see more at Patreon.com/JoLoPe. Thank you.

Sunday, February 15, 2015

On Vocabulary and More

There are times I do not think we give each other enough credit. These can also be the same times we let each other off the hook. 

I was thinking about this this morning as I looked up a word I did not know the meaning of: pedantic.

It is a bit ironic, perhaps, as it seems among the word's meanings is "pompous" and "showing off." There are those who use uncommon words who will be seen in that way, rather than as someone, perhaps, to be appreciated. 

Personally I have often admired a person with access to a good vocabulary. I hear it in the way I would appreciate a work of art I like.

Learning new words is something I have always enjoyed. But it seems that there are those who prefer to bring things down to a fourth grade reading level. 

Some would even say "dumb things down," although I think that says more about them than what is being done. There are those who just believe that people will not read things they do not understand. To make it accessible, you need to find a level available to most.

I am thinking that many who are capable of reading are able to access a dictionary. I suppose it could be annoying to have to look up a lot of words when one is just trying to enjoy something. I can understand why there would be those who would advocate for a simpler approach.

At the same time, I love words. I think some words just sound so delicious and wonderful. I am guessing it is, in some part, the artist in me that appreciates the larger verbal palette. 

Sometimes when I pick a word, it may be like picking a red. When I pick a different word, it's like picking a crimson red. It somehow just feels different, and paints a different picture. To use another metaphor, it also sounds "musically" different to my ears.

Language is a way for me to experience life in a richer way. I realize, though, that this won't be the case for everyone. I only have to think about things written in "Legalese" to realize how difficult language can get, and how frustrating.

Somewhere in between, though, I think there is likely to be a compromise. In this place of compromise, perhaps we can collectively have a greater palette to work from. And instead of seeing the use of words we do not understand as a "bad" thing, and feeling the need to label the writing, or person, in a negative way, we could begin to see it for an opportunity for something "good."

I am writing this, and thinking about this, in part because I know that I have a "proclivity" (tendency, inclination) to sometimes use language that transcends (goes beyond) the fourth grade level. (See? Sometimes I can't help myself! :p) There are times I struggle a little bit with the idea that I "should" write more simply than I do.

I think I heard one of Hemmingway's most successful novels was written at a fourth grade level. It, and other things, may make the argument that our language could be often be redundant. 

I suppose it is an interesting perspective to consider, especially if we want to relate to each other. But, then I think we learned one thing, is it that much of a stretch to learn another?

I have a hard time with things like this. My mind is always trying to find equivalents of the things I talk about that have me standing on the other side of the conversation. 

I do that not to drive myself crazy (although there are times it certainly feels that way), but rather to understand better what I think I am saying. Am I missing something? Is my perspective skewed in a way I am unaware of at first blush? Am I coming off in some way that I do not intend?

So many times people will say something to me about a piece of my experience, and it will sound so simple, so obvious. And, yet, what THEY think is that is nothing like that for me, the person living it.

Because of that, I am acutely aware of the fact that I could be coming off like them in cases like this one, and it certainly would not be my intent.

However, I think it is important for us to ask questions, and make statements that have us ask questions, as it helps us look at things. It has us get clearer about where we stand, and the things we believe, and believe to be our Truths.

What I write is my perspective and experience. I know it won't be for everyone, but in my sharing, perhaps there will be those who will find something for themselves in it that will either be a cause to alter what they say or do, or a validation for where they are.

Either way, I think that I write primarily for myself, so I definitely am writing for my audience. If I spur something for my additional audience, that works for me, too - even if they disagree with me and think me wrong. 

I have been learning just how much of a conduit I am for others, and while it can be painful and difficult at times, it seems to be a role I have taken on. So, I guess what I am trying to say - in the longest, most round about, way possible is if what I write "works" for you, great. If it doesn't, great. Great that you know what you believe, and will stand up for, just like what I am doing, and have done.

Given there was no blueprint and instruction book for the many facets of the human experience, we really are all just making it up as we go. And we know how that can go at times, don't we?

This is also to say, I am not claiming to be Universally Right in what I say. It is more about being clear about what I personally claim for myself. If others see validity in my perspectives, then perhaps it is a good thing. 

Therr are times I question myself, but when I say what I do, it is as good as I got at the moment. I think that is all we can ever really ask of ourselves. 

Ps If you appreciate/enjoy what I write, and get value from it, please support my body of work for as little as $1 a month at Patreon.com/Jolope. Thank you. 

Saturday, February 14, 2015

Valentine Meanderings

There have been many holidays over the years that I have been sad because I can't "celebrate" the way others do because I did not have a Significant Other.

As a kid I remember clearly thinking that if I wasn't married by the time I was 21, I would be an "Old Maid." Well. I am long past that marker, and have not married.

It hasn't been from a lack of desire, or a lack of trying on my part. There were times in my life I was actively doing the things you were supposed to be doing in "The Game."

I did unorthodox things, and I took chances in the name of love, and still found myself often on the outside, looking in.

There would be those who would be quick to say I made poor choices, or that I was unconsciously sabotaging myself, or that I just did not know how to effectively "deal" with men. 

That perspective has been maddening over the years. Like so many other pieces of my life, maybe things could have been handled differently, but the idea that there was/has been an underlying "wrong" hasn't quite fit for me.

What if my life in many regards was never meant to be "typical?" What if things have been exactly how they've been for a reason?

I think about the love I thought I felt for the guy I moved to another state to be with and now wonder if I mistook co-depency for love. Although I do figure at least part of what I labelled as love was love, as at the time I really did think I cared deeply about him.

What I felt for him, though, as great as I sometimes thought it was, has paled in comparison to what I have felt for others over time. Each time I have opened myself up to someone new, and really allowed myself to risk what might follow, I have found such incredible experiences.

There have been times I have been terrified, as the time before hurt so much when it ended. It took everything I had to go "there." But each time I did, I listened to my heart. It said to take the leap, and - at least at first - I was so glad that I did. Maybe THIS was the time it would work. Maybe THIS was the time and person I had been waiting for, and the reason no one had worked out previously.

As good as each time was, the next time the fear was even greater - and so was the ultimate "pay off." There were times I felt like the most fortunate person, ever. It would feel like everything just made sense, and I would find myself grateful for all of the stuff that came before, including all of the disappointment and pain.

The thing now, though, is that cancer is in the picture. I do not know how to even begin to pursue anything with anyone with that piece in place. I now get scared I may wind up leaving this place called life never really having the incredible relationship I truly have felt I could have.

I have so much to offer a relationship. Many still think there is something wrong with me. There has to be. I am the common denominator.

Maybe there is just something really right with me. Maybe I have been meant to enter the lives of those I have touched, and share myself with them as I have, and it is something I could never have done, had I "just" found one. Maybe I also found myself and found love in a way I never could have, either, by having the journey happen the way it has.

I heard someone say yesterday that we will all get what we want - just not necessarily in this lifetime. But we will, he insists, get it. Marianne Williamson, I believe, says something to the effect that the soul never has a desire it can't fulfill.

I have had a hard time with what she has said, having seen how many of my soul's desires have seemingly gone unanswered, and at this point never will be. I never, however, considered the idea that my soul transcends who I am here and now in this lifetime, and that what doesn't happen in this body with this ego could happen in another time and another place.

We all want a great number of things in this body and with our current ego. Many think this is our only shot, and much of what I am saying is just nonsense.

I can see how it makes us that much more desperate - and adds urgency in our life - to make things happen in a certain way, with certain people in particular. 

If we didn't look at our lives as the whole book, but only as a chapter of a book, we might view everything through a much different lens. 

How do we know which is "right?" Despite what anyone says, there really is no way to know anything for certain. We just have levels of belief that appear more certain than others.

What I do know is that the only thing I seem to be able to do is to make up stuff that I believe about my life. I can make what has happened into something bad and sad, or I can tell myself how what might have seemed to be bad and sad laid the foundation for something quite incredible.

I can make myself miserable thinking that I somehow can't get things right, that I am sabotaging myself, that I can't figure things out no matter how hard I try, or I can do what I can to embrace what is, and love everything about it, and me.

My circumstances won't be any different, but in allowing myself to be ok with things as they are, maybe I give myself an incredible gift that would be even better than trying so hard to insert myself into a life that it seems I was not meant to have.

I feel some sadness when I say that. I think we have been trained so well to see life a certain way, and when it doesn't conform, it is inferior, bad, wrong...

Funny thing? I felt the sadness, but now it already feels like it has shifted. Maybe that sadness belonged more to the idea of what others think life should be than to my soul's idea of the journey it intended to take.

I felt very strongly like I needed to write this post, and I think I can see why now. It is a way for me to explore ideas, and release things that need to be released.

I have known for a while that is what I do here, there are just some times it is much more clear than others. This is one of them.

I am feeling a bit more peaceful. And now I think I am going to go take a shower, and then make some sourdough bread. And then...who knows?

I do also feel a bit on edge, too. Like I am on the edge of something, but more like "chomping at the bit" than anything "bad." I think there are times I shift, but do not exactly know to where, or what it all means. 

Dealing with chemo can be a very bi-polar experience. One day I don't care about anything, and death couldn't feel closer, or more welcome, and then another day I couldn't feel more alive and desirous to do things. Having the motivation and energy to do them is a bit of a different story...but all I can do is give it my best shot.

It is all any of us can do, really. And sometimes the best may not look anything like what we think it "should." To which I (can now) say, "oh, well."

Ps please see Patreon.com/jolope and if you enjoy the things I write or create, consider supporting me and my creative work. Thank you.


Tuesday, February 10, 2015

Being in the Dark

What would you think if I said, "I give up?" I am sure you might be tempted to tell me not to, especially if you care about me. But I didn't ask what you would SAY. I asked what you would think.

Would you think about all that I have had to deal with physically? Would you have any clue about how emotionally I am broken? Would you think about all of the times I have had to contend with the judgments of others? Would you think about just how much pain I must be in? Would you consider how difficult it is to live in a world that says value primarily looks a certain way, and that many will judge me sorely lacking because I do not have value in "that" way, and therefore often be treated as though I am invisible - and therefore without any perceived value. Would you think about how difficult it must be for me to go day-to-day feeling the impact of how others do not see me as one valued enough to be helped? Would you be aware of how saddened I am by the fact that for the most part I am alone in this, and that it hasn't been by choice? Would you think about how lonely and isolated I often feel? Would you think about all the love I have in my heart for others that doesn't get a chance for expression, or is greatly misunderstood? Would you think about the seeming contradiction of those who say I should be a presence in the world, but then proceed not to talk to me for months? 

What would you think, really? I only ask you ask a point of perspective for yourself. I am too hurt and emotional right now to personally care about what is likely to be an answer way more logical than I can handle.

What I am feeling right now is a lot of hurt and a lot of pain. I can logically add everything up, and come up with a big, fat zero right now. 

That is what pain does. It is a great distortion tool. I have hated, absolutely hated, what chemo does to me emotionally. It is one of the hugest reasons I did not want to go back on it.

But when the belief is if you don't, you will most certainly die, then what the hell are you supposed to do?

The thing is not dying is not living. And in a world in which we do a dance that says people shouldn't matter, they should, and they still do. 

A part of me really has had enough. I truly don't know how much more of this I can do, especially alone and struggling the way I am.

I wish I did not want or need another person, but it seems wired into what makes me human. I have overridden this need more than once because I often have had to, but it isn't the least bit easy to do.

I really am tired. Alone. Frightened. Sad.

Your logic may think otherwise. It may be wanting to find a fix. It may be assessing how far from "reality" it thinks I am. It may be doing anything and everything to stay away from the painful reality that I face. 

No one likes pain, and we will do anything we can to transform, transmute, and in any way disengage from those things we find in some way to be uncomfortable.

Well. If you want to, YOU can. Right now I can't. Things may look darker than usual at the moment, but even in a different light, my reality has many unpleasant components these days. 

It really sucks, and what scares me is that there are moments I truly do think about giving up; and given how things are, it probably wouldn't take much to die. 

And lest you think me somehow calm and detached as I have written this, my emotions are flying all over the place. My logic questions posting this for so many reasons. 

And I have tears stinging my eyes, and streaming down my face. The depth of pain I feel is a deep and dark canyon, the depths of which could all too easily envelope me should I tip.

All too often I do not think people really understand what I deal with. All too often I think I sound healthy, clear, and like I am ok, even in the midst of some of my darkest times.

It is hard to convey just how devastating these last few years have been - and often how devastating the circumstances in my life continue to be. I may have learned to just keep going in spite of everything, but it is awkward and as uncomfortable as hell. And very few even have a small sense of the shit I have had to deal with.

I am tired of being perceived as doing everything wrong. For being too public. For asking for *gasp* money. For being perceived in some way inadequate because I do not have people in my life to rescue me when others don't think me worthy of help. 

I once said it would be an interesting story to have someone to have to campaign for their life in order to live.  If they raised what they needed, they got to live. If not, then they didn't, because they were not "worthy" to live. They "obviously" are not valuable enough to live, as people weren't "voting" for them.

It would be something as a story, but as someone who sometimes feels like I need to "market" my situation, and ask for "votes," it doesn't seem so far off. And the "reality" of a life ending because it is perceived to be lacking in value seems a bit too real and close to home.

Thursday, February 5, 2015

Recipe: oven fries

Simple. Easy. Delicious.


The people who are going to be most receptive to any conversation are going to be those who share similar perspectives, experiences, biases. It is not a statement of Universal Fact, but rather, what I think is the most likely to happen. A person with a vested interest in a subject is likely to be the best audience for the subject. 

Lines can be crossed when people see similarities in the human aspect of a situation, so it need not be an exact 1:1 situation. 

When there are awkward, uncomfortable topics, what often happens is those who are unvested are usually uninterested, and will go the other way, as far away as possible. Ironically, they are often the ones who are most able to be of some help. The ones in the quagmire often need those outside of it.

If I was going to speak to those who were most interested in my situation, it would likely be contained within a community of those already impacted/invested. There is a problem with this approach in my eyes because, in some way, you are already speaking to "the converted."

Long before cancer showed up, I started to have an interest in things that weren't exactly mainstream, or even welcome - at least on the surface. I found, though, that going into unexpected places with what I had to offer drew to me those who were interested, but silently and privately - for fear of what others might think. There were others who didn't even know what they were interested in, until we had a conversation.

Had I gone the route often advised - to go where those who had the interests were - I would have missed opportunities with these other people who may never have gone to "those" kinds of places.

If we go only to the places we are "allowed" to go by convention, or some unwritten rule, we may not be going where we need to be going. I have spent a good part of my working life running counter to, and questioning, the Shoulds, often getting myself into trouble.

There are those who would say that was reason enough to alter what I do. Funny thing? I often became more adamant, because I truly felt like I was doing the "right" thing. Not Universally Right, for the record, just Right For Me, and those I might meet along the way. The fact that I often saw value in "being right" only affirmed my desire to take the road I would choose.

It was the freaking Hard Road, but it really seemed to matter and make a difference, so I often found myself in uncomfortable and unsettling situations. 

So then cancer shows up.

At first, I was quiet about what was going on. I reluctantly became public about things when it was apparent I needed help. Along the way, things were happening. I was being affected by how people reacted to me. Instead of being quiet, and pulling in, I got more verbal. 

People kindly suggested that I change my approach. What I found was that by being true to myself I have connected in some amazing ways with some people I may not have met, had I just stayed in the Containment Area, and only said the things that were acceptable, in the places that were most appropriate.

Has this approach won me lots of fans or help? Hardly. And there are definitely times I think it does actually hurt me because people do not know what to do with it, and therefore, what to do with me.

But, once again, it feels right. It feels right because I have come to realize that there are many who need a voice but, for some reason, don't have one. Our society has trained people who have issues on how to act. They have taught them what is acceptable. They have taught them what the repercussions are of not following the rules.

I have referenced the lyric of a song that says, "Freedom is another word for nothing left to lose." I have come to really appreciate what that lyric means. 

When you have said and done everything that you can say and do and find that it doesn't seem to matter, it would seem that nothing else will matter, either. You get more bold, more daring. You say things you never thought you would. You do things you never thought you could. You become fear-less in the sense that there is a lot less fear about what others will think because it really does not seem to matter. 

If you feel ignored, they will just continue to ignore you. If you feel judged, they will just continue to judge you. The only thing that will change will be you. Internally you will claim parts of yourself that were previously silenced. You will find yourself expressing yourself in ways that give you true freedom to be yourself.

It feels amazing.

It also sucks. 

But what many do not realize is just how much holding back, and being "appropriate" sucks. 

Now, I am not advocating going out into the world and creating havoc. Although you start being more true to yourself, and others will probably think you are doing just that - even if it really isn't a "big" deal in the grand scheme of things. For them, though, it may certainly feel like it.

Why am I saying all of this? Because it is very much on my mind after recent events. More than one person has mentioned something about the "appropriateness" of my Facebook post in regard to the guy in Michigan. 

So many times I say nothing when it comes to these things - at least not in a big forum like GMA's timeline. I may say something on mine, or here, in this blog, but never have gone outside those "limits."

Part of it has been fear. Part of it has been "appropriateness." 

This time was different. Something told me to do it, and I did - without giving it too much thought. The thought would probably have had me change my mind.

I knew it did not quite "fit," but the way I saw it, it was a place to have a "conversation." I did not just talk about me and cancer. I framed the conversation in a context that I did feel worked.

Five people liked my post, and a couple of comments seemed to agree. It was the minority, by far, but it apparently did plug into something for a few people.

I had thought about keeping it up, but found the replies spiraling in a non-beneficial way, and thought it best to remove it. 

I learned a lot from that posting. Would I do it again? I really am not sure. But I do know that I am definitely not deciding not to do it again.

If there is that kind of response, and in those kinds of numbers, it tells me that there is a lot of awareness that seems to be lacking. Of course I hope if people become more aware of what "is" they will alter how they react to people in the uncomfortable, awkward situations they've wanted to ignore or avoid.

That is the hope. There is a chance that they will hear things I say, and still not be able or interested in altering anything. The reaction of many of those replies speaks to exactly that.

But it is those who said nothing, those who did not click a like button, and who did not engage that I am most interested in. I know from my experience on this blog that many read, and are touched by, what I share and write, but often say nothing. And I know this because eventually...they do say something.

Many times I get more silence and grief than I get acknowledgment, thanks and appreciation. But, here's the thing, when I do get those more positive things, they touch me on such a deep and impactful level that the other crap doesn't really matter.

I wasn't happy about the way things went with that thread, but I was a lot calmer and clearer about it all than I have been many other times things like that have popped up.

I see it as a tool. I see it as perspective. I see it as impetus for important - and needed - conversations like these.

Do I like it? Hardly. But do I appreciate what it has to offer me in terms of perspective? Absolutely.

There are people who tell me that because things are so bumpy they're not working, and that is why I should change how I do things.

First of all, I have no clue what differently would look like. Second of all, who says that because things don't sparkle and shine that they're not the right thing?

Pearls are formed from irritation. Diamonds are formed from pressure. Irritation and pressure are two things we likely would say we don't want much, if anything, to do with. Often they are perceived to be negative.

But what if it just is how things are? What if we could have them without attached judgments?

I do not know if how I approach things is really the best for me, many times I do feel hurt by reactions, especially when the place I am coming from is misconstrued. At the same time, even if I change how I do things, you know people are gonna misconstrue me any way, don't you?

I think the key really, truly is to keep listening to that inner voice. It doesn't assure us of clear sailing, but at least we ARE sailing, and not docked somewhere.

I would much rather live my life "making mistakes" than not live it at all. I spent too many years holding back, and I just ain't gonna do it any more.

My heart is in the right place. I know that, without a doubt, and if people can't see, or feel, or acknowledge it, it is clear to me that they are tuned into something else.

When you are tuned into a station, all you can get is that station. You won't  get R & B on a country station. 

Tuning into love doesn't mean we have to agree. It just means we can see the core and heart of another, despite how it may be dressed up. And we focus on the core, rather than the dress.

When people talk, we can choose to listen with our heart or our head. I am fairly certain many of those responses I got would have been a lot different, had their heart been doing the listening.

I could be wrong about this, but I think when love is present, the underlying feeling is "and." I think when the mind and/or ego is in charge, it goes to an "or" position, which could often look and sound like judgment.

If we are going to have a world that is loving of others, I suspect we need to do a bit more "and-ing."

Wednesday, February 4, 2015

How Dare I?

Hmm. Where to begin this post? I actually just re-read one of the posts in the images below, and saw something I did not originally see. I had said previously that it was likely that no one who jumped on my posts had an intimate relationship with cancer like I did, with the exception of the woman whose husband was dealing with cancer. I was wrong, and I was right.

I say this because it seems to me that each person who deals with cancer has their own experience with it. There is no "one-sized fits all" experience that a person comes into with a diagnosis. Different cancers have different effects on the body. There are different surgeries and different treatments, and different treatments affect different people differently. And that is "just" the medical side of things.

A person who has a husband or a supportive family and/or friends is going to have a different experience than someone who does not. A person is not going to beg for help unless they have run out of options. A person who doesn't beg likely has some means of support to help them without ever having to ask for additional help. My guess is that the woman below who mentions she is dealing with breast cancer has very different circumstances than I do.

There are so many things that went "wrong" with this thread. My intention was to awaken awareness, and encourage a conversation. The first response was quite supportive. The second, a bit confusing, and it just went downward from there. It got to the point that I felt there was a bandwagon that people were jumping on, and it no longer seemed that there was a helpful reason to keep the comment up, so I deleted it.

I thought about it before I did the deletion, and wondered if somehow the deletion meant they "won." I almost imagined some in celebratory poses, if they noticed it was removed. 

The thing is I felt from my first post it might not quite have "fit." However, it was a Facebook thread, and I was discussing the man from Michigan, in a greater context. I felt like I was attempting to expand the picture and conversation. I was seeking an AND conversation. However, it seemed to be a theme of those who posted to tell me it was HIS story. How DARE I say the things I said. 

Had it been his wall, had he posted it, would I have said what I did? In all likelihood, no. I was on a public forum, and I had no idea that there was only one type of response that seemed to be allowed - a cheerleading one. Everyone seemed to be defending a man that I wasn't even attacking.

The point of the thread went so far astray, and I tried to bring it back closer to where I had intended, but others weren't having it. I don't think I took it astray, but I know there will be those who would most certainly disagree. If you read what most wrote, the blame for their idea of what I meant, and where the posts went were most assuredly my fault, as I wasn't seeming to get just how jealous and apparently ridiculous I was being.

I decided to do screen shots of the postings, as I thought I might share them at some point. I am not sure that I thought this point would be as soon as this one, or that it would even be in this way. However, it feels, like many things, to be important to raise this subject. I hate it, in a way, as it feels like I am raising a bull's eye in front of me, encouraging others to take their shots.

I am actually grateful for those who have raised the "jealousy" conversation with me previously, as it has made me look. Am I jealous? Could I be missing something? Could it be unconscious? The fact is that I have come to truly look at it, and have determined that the answer is no, and not just a small one, a BIG FAT NO.

Would I love the kind of help that he has gotten? It would be crazy for me to say no. It would also be dishonest. Of course I would. Who wouldn't?

But just because I would like and appreciate it, and just because I raise the topic, it does not mean that I am jealous. In thinking about this, I thought about how my original post would have sounded, had I been talking about someone else who was dealing with what I am dealing with. It has a different feel, and somehow I wonder if it would have been met with a different reaction. I have said countless times that I feel that what I said comes off in a biased way because I am in the midst of it.

Today someone pointed out a Bible verse to me about how Jesus said something about people having eyes to see, and ears to hear. In other words, a person has to be in a certain place and mindset to be able to hear and experience something. If you're not in "that" place, whatever that place may be, you're not going to hear or experience anything other than what you want to/expect to experience.

I don't really understand why I am demonized for my experience. There are some who would disagree about that statement. They would say it was all my doing, and my perspective that has that be my reality. I am not going to deny that I have a role in my experience, however, after dealing with things for almost 3 years now I have been shown that what I believe is true for the experiences others have with cancer - and myself - are not so far off from what I say they are. And I am NOT saying it is true for everyone dealing with cancer (see above), just that there are others with similar issues to myself, and that my experience is not as unique as some may think it is.

For the most part I try to respect where people are in relation to their beliefs. I just wish I could have some of that back a bit more often. I realize that I rub people the wrong way by being so open and honest and direct and passionate about things that aren't normally expressed in such a way. It isn't my intention, exactly, to upset people. At the same time, my experience is my experience, and many times it is negated by those who just don't want to hear about it. 

Well. I'd rather not hear about it, either. Unfortunately I don't have a choice, though. I don't have a choice, in part, because I desperately need people to understand what I am dealing with, hopeful that if they do, they will actually see a reason to help, and think me deserving enough. 

I also don't have a choice because when things like this happen, it makes me more than ever want to speak up for those who don't feel they can. I always say I am not the only one, and I am not. There are likely many more than you realize. But you'll never know to what extent there are those dealing with stuff if no one ever says anything.

I have been very uncomfortable stepping out this way. VERY. It is not a place I ever would have seen myself in before cancer showed up. I have been quite happy to blend into the background much of my life. But the thing is that the more I step into who and how I am, despite what people say and do and believe, the harder it becomes for me to even remotely consider turning back.

Ironically, I know, from speaking to many over the years as a coach and hypnotist, that many people want what I have in regard to speaking my mind. We all want to be ourselves, and many find it next to impossible to be who they are, finding quite justifiable reasons to hold themselves back.

This is not said as a judgment, but rather as an observation from someone who used to be "there." When I was there, it all made perfect sense. It made sense not to upset the cart, and instead let the upset live inside of me. 

It is amazing to me the difference that cancer has made in my life. When you realize that the clock really is ticking, and your time may run out sooner than you hoped or thought, it has a way of affecting everything in your life. Or, at least, it can. It tends to shatter many things you thought and believed, if you are willing to pay attention.

People like the Vows of Silence we take. They like it when we don't question things. They like it when we let things slide. They like it because that means at some point we may be able to be the one who doesn't get questioned. Letting others off the hook often means we get off the hook, too.

I have often said if something works, it works. So I am not going to tell you it doesn't work. I am not going to tell you to change it. But what I am going to say is that I am not sure it works as well as we think it does, and that there is a hefty cost attached to it. That is *my* thinking, though, and your mileage may vary.

As far as the posts go? I am sharing them with avatars and names blanked out. The images could have been cropped better, but I don't really have the time to do it. I think you will be able to get the gist, though. 

I share because I want to be open about my experience. I want people to see what happens in regard to me and my situation. Some will think me jealous and definitely agree with many of the posters. Some will think me stupid for showing my perceived ignorance/denial. There will be many glowing thoughts about this; I am sure.

All we ever have is what we have in the moment. And in this moment I know my heart and my intention about this, and if others are not able to see it, or do not care to see it, well, so be it. It is the stuff of life. It happens all the time. The world is full of stuff like this, and it creates life-endangering conflicts and differences of opinion. Thankfully this isn't one of those more extreme moments and that the life and death conversation is more an internal one, as my life very much feels like it depends on me speaking my truth.

We are all just doing the best we can at any given moment. And at those moments, there are others doing the best they can, too, and it will be at odds with our best.  The most I can hope for in sharing this is that a conversation is stirred up that might encourage some thinking about how things are for others outside of one's own sphere of life experience.

If you want to have a conversation about this with me, great. Feel free to ask questions, or ask me to clarify something. I stopped adding to the conversation when it was apparent it wasn't one, and those posting didn't seem to be interested in what I was expressing. As a result there were things that I did not address, despite wanting to.

I am at the point now that I see that no matter what I say or what I do, there will always be people I will be damned with. I will just never be able to win. I just wish there didn't seem to be so many of "you." I hate to say it, but I really think there are those who just wish I would go away.

My heart is in the right place, and you would know that if you gave me a chance, instead of thinking that you know who I am based on one sliver of information, and whatever it is that you read into it.

Perhaps this will provide a view into a perspective you didn't even know existed. Perhaps it will have you consider being kinder to someone in need. 

Perhaps it will just justify everything you believe about someone like me.

If you have gotten this far, I hope it offers you something helpful.