Thursday, April 30, 2015

Don't Talk About...

In no particular order...



The list goes on and on and on.

It is no wonder we have a steady diet of nonsensical things that really do not matter in the grand scheme of things. We are not allowed to talk about many of the things that actually do matter.

And then...

Even IF we have "permission" to talk about certain things, it is within limited confines. If we do it out of the socially acceptable, approved context, it creates all kinds of issues. In some cases, if we do it all, it is a problem in and of itself.

It drives me nuts feeling muffled. If you know me at all these last few years, you know there isn't much I won't talk about, or say. It has been incredibly freeing to speak up, and speak out, even if I need to distort things a bit because of who is involved. It is very difficult to talk about things that affect me when other people are involved. After all, what they are doing or saying or not doing or not saying is what I would feel a need to discuss.

I once saw a cartoon I think I referenced before. An author is signing books, and her parents say something to the effect that if they knew she was going to be a writer, they would have been nicer to her. As I writer, I have often felt the need to express myself. The need has gotten significantly more urgent these last couple of years. I am not sure why, or who the words are really for, but I do know it seems to really help others, and the release definitely helps me.

I have touched upon, and even immersed myself in, many of the taboos. There are some I have barely touched, and the things I haven't discussed bother me. I feel like I should talk about many of the things that affect me, and if I could do it without causing issues, I would. But I can't. So I don't.

I think the fact that I rarely hold back any more makes holding back at all extraordinarily difficult. 

Some people think I shouldn't care what others think. It is easy for them to say. I am in the midst of an often desperate situation; I have to care on some level if what other people think and say affects me. It doesn't often change anything at all, and those times I just say what I need to say. But other times, I can't be that free. I want to be - desperately. But I can't. 

Well. I could, but there might be a very hefty cost to pay. And right now, I have more cost than I can handle. I don't need to be adding to my expenses.

Ps if you appreciate my work, please support it. Thank you. Patreon.com/jolope

A tricky thing?

A friendly reminder.

Posted by The Blue Street Journal on Tuesday, April 28, 2015

"Privilege is when you think something is not a problem because it is not a problem to you personally." (Seen in a Facebook image post, unattributed)

Not sure what I think of this. The way it is worded, I think it can remove people from seeing themselves in it. Most people who don't have to deal with something would probably not likely see themselves as privileged, and defenses may go up. There are some people I personally know who would likely never see themselves that way. But are they "privileged?" I think many would think so. 

I think part of any potential issue is also the fact that there are periphery conversations around the idea of privilege that aren't exactly positive, making some not necessarily desirous of claiming such a label. 

As with many things, it can be a knotted mess, tethered by the meanings that those who use it bring to the table. I tend to also think a sign like this is quite possibly intended to "put" someone in their place. I could be wrong (it does happen, lol :p), but if it is what I suspect, and if that is accurate, who likes to ever have that done, or attempted?

Words. They can be so troublesome at times. They can also be such incredible allies. But it is so hard to say anything without it having some baggage, or without it being received without another person's baggage.

The other day I said something to someone that I would never perceive as a "bad" thing, but it was picked up/received that way. It turned out what she was picking up on was more feelings that I was having about myself and circumstance, and it had nothing to do with her. But she took it personally. Thank goodness she told me what she felt; I would never have known otherwise, and now we are all clear.

When we do not talk about what we feel, we have no way to make sure we are on the same page as another person. So much these days is in sound bites. It would be nice to have something so brief and succinct speak volumes about something, but the likelihood of that happening is much slimmer than we ever think it is. And, even if we understand where another person is, just to keep it interesting, we can find ourselves lacking in agreement. 

Maybe we will never all be in accord, and maybe we are never meant to be. But maybe we are not meant to be in so much discord, either. How many times do you think you know something with certainty only to find out you really have no clue? 

It would be pretty great if we could "just" give each other the benefit of doubt before going off on a tangent that might be wasting gas and other precious resources. But the first thing in that process is to recognize that there is a reality, or a perception of one, that varies from what we immediately think we know. The more wrapped up we are in any emotions regarding the situation, the more difficult any other possibilities might be. Emotions can certainly be blinding.

But the more we can do it, the better the chance we have of having an interactive, cooperative world, rather than a disparate, and potentially destructive one. I do not mean to imply that disparate equals destructive, so that may not be the best combination of words. After all, great harm has been done in the name of agreement.  

Hmm. I just walked into something, and I am not clear where "out" is. Good is not inherent in agreement, and bad is not inherent in a lack of agreement. Although, on some level, I think we have been taught this idea.

When it comes to stuff like this, I think it is difficult to latch onto absolutes, although it comes with no lack of trying. It would seem one of the trickiest parts of life is to live in the most absolute way possible with respect - and awareness - for the fact that there is very little that could actually be defined that way. I wonder just how often we think we have something "right," but we are no where even remotely close.

A Suitcase with No Front Teeth

My mind is swirling. It is the best day in about a week, and things are so clear that I can see how bad all of my messes are. I am aware of them other times, but they are often obscured by the haze in my mind. I have to think that is a good thing, especially when there isn't much I can do about them. But then days like this happen, and it is frustrating. I feel like I "should" take care of those things. But the problem is that if I don't write about the things on my mind first, they will gnaw at me, and it will drive me crazy.

I am constantly having to make choices about how I utilize the energy I have. Some do not get just how I am, and my life is, affected by it. If I choose one thing over another it is because I must not.want to deal with the other thing. While on some level there may be some logic in that statement that makes sense, it is not always the case.

What people do not realize is that the energy available has shrunken. Most work from a framework of 100% and transpose it over me, because it is all they know.

Let's say you have a suitcase, and it has certain dimensions. For the sake of simplicity, let's say it is 24x24x24. Some people are good packers, and can really max out the space, and some really suck at packing, and can only get a few things in that same space. And, of course, there is an array of possibilities in between. Results may vary, but they are all working with the 24x24x24 space. And because that somehow seems to be a given, there are those who think they know what they are doing who will offer to help those who aren't as effective as packers. They may even call themselves experts because they know the parameters, and feel adept at working within them. Anyone with a suitcase can be a client. All suitcases look alike because they all serve the same purpose. 

But. Here's the thing. Some suitcases aren't those dimensions. Some suitcases are actually smaller. It may be a little, or it may be a lot, but because it is an "energy" suitcase, it is perceived to be able to be able to hold a certain capacity. So the expert comes along and tells the person who can't get all the stuff in it that since the expert can do it, they know it is possible to do. They have helped others do it. It CAN be done.

The thing is, though, they missed an important fact: the suitcase just can't hold any more - no matter what they do.

When I was a kid, I wanted to learn how to blow bubbles with gum.  Someone was trying to teach me when another someone pointed out that I did not have front teeth. An obvious thing was missed on the way to setting out for a goal. In pursuit of what was desired, the current reality/situation was missed. Blowing bubbles, for me, at the time was not possible, no matter how much anyone wanted it to happen. It just wasn't possible in the existing context.

The same thing goes with the suitcases. Some suitcases (contexts) just do not fit a desired goal, and it just doesn't matter what you say, or what you do, or how you do it. It just ain't gonna happen. And, yet, we torture ourselves and others over what we think SHOULD be possible. We tell ourselves or others we are being lazy, we couldn't possibly want it, we could do better...any number of things to try to explain why something isn't happening. The problem, though, is that at times like that every reason is given but the one it really is: the suitcase is too small, and it has no front teeth. :p

All too often people see my suitcase and make presumptions about it, and me, by extension - based on what they know of Suitcaseology. But what can also happen is there will be those whose suitcases have also shrunken who are better able to see when another's case isn't a "standard" size. Interestingly, there will sometimes be a subset of Suitcaseology experts that are familiar with the smaller size who now think they know how others with their smaller suitcase should be.

We human beings continually fascinate. We seem to need to make determinations to give us the perception of permanency, relevancy, controllability. In fact, we really don't have much of those things, if any of it at all. But in this process, we have the potential to make ourselves, and each other, miserable.

There is almost nothing worse than a Battle of the Shoulds. 

The reality I face these days is not one I want, but it is one I often find myself having to defend. I wish I could just change my mindset. I wish I could just change my attitude. I wish I could do a lot of things. But my reality says I have no front teeth. Because I have to work within this reality, it really sucks when people come along trying to tell me how to pack my bag that isn't big enough to hold everything. It is really hard to have to explain things to them, and it is really hard not explaining them. Either way it is taking energy that I may not really have.

Many times dealing with these kinds of things, instead of really dealing with things, becomes my reality. Imagine all the things you take for granted, and stepping back from them, and having to deal with the step that comes before. It would likely really suck. Often conversations like this are somewhat equivalent, which makes each step that much more of an energy hog.

There is more I want to write about this, but I think I will leave this post at this point. I have had some fun with my suitcase with no front teeth, but hopefully it has made a bit o'sense to you as I mixed my metaphors, and perhaps you will reconsider how you approach others and their suitcases.

Ps have you appreciated this blog post? Please become a patron. Patreon.com/jolope. Thank you.

Wednesday, April 29, 2015

It is likely not what you think...

If you saw a kid selling pens to fundraise, you wouldn't think of them as a business. You wouldn't tell them there is a Staples down the road, and that there is a lot of competition.

If someone came to you and said they had a friend in need, and that they wanted you to buy something at a bake sale to help that friend, you wouldn't think they were in business. You wouldn't tell them about how hard it is to sell sweets these days.

And, yet, when an individual (like me) tries to help themselves instead of outright asking for help, "you" offer business advice. You tell the individual how hard it is to sell jewelry, or whatever it is they might be offering. You treat that person like "just" another artist, business person, jewelry maker.

If a person can't work a job, it is going to be impossible to work a business. I know what being in business takes. For several years prior to diagnosis, I was in business for myself. It is hard work. It is long hours. It is a lot of detail. It means a lot more than most who have never done it realize. 

It is also a lot more than I am capable of these days.

It sucks having to ask for help. It sucks having to beg for help. It also sucks when people confuse things offered in exchange for help as a business venture. There are times it really feels like a no win situation.

What am I supposed to do? I am not asking the question to have it answered. I am asking it as a way of saying I do not know what to do. I really feel like the way we have come to look at things is less than the empowerment we are led to believe.

I do not want to sell you anything. And, yet, I am told over and over and over about how I need to sell things differently, how to market, how to advertise, how to...

Sales is about creating a problem, a need, and then telling you how great my thing is to fix this hole in you that I just made you aware of. I have hated the whole "sales" thing for quite some time. It is likely a reason I was never very good at it. I hate the idea of being manipulated, so I tend to steer clear of doing it to others. Unfortunately, along with a lack of "sales" comes a certain amount of judgment, and other stuff, most of which is not deemed positive or desirable.

When I offer you stuff, it isn't about the stuff. It isn't about some hole I just created. Do you need it? Probably not. Do you want it? Maybe. Maybe not. Is it something you just have to have? Not likely. But ya never know. But it really isn't about you. I know we interact with the world from a what's in it for us place. It is so much that way that many times when we want someone to do something for us, we are trained to make it about them. 

In some way, we are Grand Enablers that way. And I am not sure that's is a good thing.

There are times others just need help, period. There may be nothing in it for the person who can help. There are times the person who can help can see so much of nothing for themselves, they even get annoyed by the person asking. 

Does that sound like the way the world should be? Really?

I may be making some pretty broad statements, but I would not want it to seem that I feel like they are absolute statements of fact - because they are not. However, as broad strokes they fit quite often in different regards in regard to different people and circumstances. They fit more often than is likely comfortable for someone who would rather not think about it, or has no cause to.

In 3 years I have tried several approaches to asking for help. My least favorite is just asking outright. Oddly, perhaps, the times that I am at my worst, the times I am the most frazzled, the times I have seemingly lost it are the times that get the most attention. None, however, have brought the kind of money that can help me enough to be able to stop talking about my need for any great length of time.

Some may think the hole is rather large, and will never be filled by how I have to keep asking. Well. If you put a drop or two in a bucket, you will have a much greater, and more frequent, need than if someone just came and filled it up. I get a little here, and a little there, but if someone could just come along and really help get some momentum going, I could shut up, AND stop worrying about things for a while. Instead, though, many choose (for various, likely valid, reasons) to continue to be a bystander to what unfolds for me. 

If all those bystanders even contributed $1 it could make a big difference. 

When I ask for help, it is - sorry to say - not about you. A drowning person isn't thinking about the person who may save them. They are only trying to survive. That is all I am doing when I put the stuff I do out into the world, hoping that in some way it sparks something in someone. Maybe they won't pay attention to me drowning (how enticing is that?!), but something sparkly will draw their eye. I would prefer they just want to help a person in need, but I have been assured it just doesn't work that way.

I am not sure I believe that, but I know there are many who do. I am not sure it is something left untouched, either. We really do let ourselves off the hook a lot when it comes to anything that makes us uncomfortable. 

Is it possible, though, to find less discomfort - if we would just stop ourselves from avoiding the things we do? I certainly think it is possible, given what has happened to me. Being immersed in something with zero choice has forever affected how I interact with many things - including cancer. And. You know what? It is a good thing.      

Ps some think I just say words when I say $1 matters. They really are a lot more than letters of the alphabet arranged. $1 means my survival. I would not ask for it if it did not mean something. I do not have energy to waste. If you have valued this, or any, blog post, please become a patron for $1 per month (even for just ine month) and help me financially survive the ramifications of cancer. It really does mean something. What you may think is an insignificant act can be quite significant. Thank you. 

Monday, April 27, 2015

If you are hungry...

If you are hungry, eat. 


If you are cold, put on a coat.


If you are unhappy with your life, change it.

Of course.

I have been thinking today about how we live in a world in which many have so much they take for granted that is possible, they think nothing of simplistic solutions.

You need money?

Well. Get a job.


What if you can't afford food to eat, or there isn't any to eat?

What if you can't afford a coat?

What if you have done all you can to make a life for yourself, and still find yourself stymied?

What if you aren't healthy enough to maintain - or even get - a job?

There are arguments that can be made in a myriad of ways that will say that "anything" is possible. But one only have to find him/herself in a situation that shows the inaccuracy of that statement to discover a reality that we have been told is only a figment of our mind and perceived limitations.

I am not going to argue for limitations. I think it is a difficult conversation to be had, and one that I am not sure anyone can "win," at least for more than a virtual moment. 

What I am going to do, though, is question how combative we seem to be about the idea that there are things that don't go the way we want them to, that there are things that seem outside of our control, that life isn't as manageable and predictable as we desire, and would like it to be. It is relatively easy to say things about something when that something is going the way we want it to/think it should. We even overlay what our perceived reality is over on others. Of course they should eat. Of course, they should...any number of things.

Right now, Baltimore is a big mess. To those outside of it, the shoulds are quite apparent. But to those in the midst of the rioting, another reality lives. It is very difficult to tell another how they should be, what they should say, how they should act, and have it heard, when it is fairly, readily apparent that there is little to no understanding, nor empathy, for what that person is truly facing. In order to state an "obvious" fact, there is often an inherent denial of the other person's reality.

I find that when it comes to my situation, there is a lot of "of course" suggestions. People just do not realize that the reality I face does not fit the mold we have been told we are supposed to fit. It can be incredibly frustrating to have to explain things over and over and over - especially when, even after it is explained, the underlying feeling is that there is something wrong with me, or my perspective, and not with what I actually face. As a result, often nothing changes, and people helplessly turn away. "Well, if that isn't the fix, I'm done." Often the person hurting in the situation becomes the one to blame. They don't listen. They don't act. They're doing things all wrong.

I am not sure what the answers are to many situations. There are some that likely come from our own making. But I am fairly certain that life is not as neat and tidy as many would seem to think. I think there are just some people who haven't had to face the kinds of dilemmas others have had. Hopefully they never will. But at the same time, if they never do, will they ever be able to have the kind of empathy a person in need may need?

Maybe not.

Life is so full of different types of experiences. Maybe some are never meant to understand. Maybe they are meant to believe the things they do. Maybe they inspire others to listen, to act. Maybe they just haven't gotten to the point that life kicks 'em in the butt, and shows them a thing, or two, about how uncertain their certainties are.

I don't know. But what I do know is that we seem to have some pretty large chasms between us these days, much of which is predicated on what we think we know and believe. And I am not sure that it serves us terribly well.

We all have a need to be heard. And somewhere along the lines, our discomforts about a lot of what life is about has had us turn a deaf ear, in the interest of "helping" others. We figure we can't help someone who "doesn't want to be helped." Just because a person can't do what another thinks should be done is not necessarily a reflection of that person - but we will often make it one. Some even get pretty arrogant about their perceptions, elevating themselves as "smarter" "wiser" and all kinds of positive adjectives for themselves, but not for those who are having circumstances they do not understand, and seem to have no desire to.

There are all too many times these days that I feel like I just can't live life in the context that I used to. It is like the filters were stripped away. It makes it very hard, for so many reasons, to interact with those still in the "matrix." But the thing is that a lot of what I face is seen to be negative/a problem. 

If I was deemed "successful," people might be more inclined to listen. Instead, though, I am seen as a negative person, who is in denial, who won't listen, and all kinds of labels that aren't exactly positive, nor helpful. I am seen to be making excuses. 

I suspect it might be better for one to see me that way, as an alternative would be potentially more problematic, as it might suggest that life isn't as neat and tidy and controllable as many would like to think. Better for it to be my "fault" than to perceive it as a reality that can show up in life. After all, if it could show up in life, then others, too, may find themselves dealing with similar crappy things. And who would ever want that?!

But, oh baby. What a wake-up call that can be.

Saturday, April 25, 2015

Amazing how good I look for a depressed person going through chemo. Don't you think? Make-up, wig, lighting all help.

So today I was thinking about something, and I want to ask a question of those of you who read this who haven't helped me in any way, especially financially. I am going to put you on the spot, but the good thing is that no one has to know the answer - except you. 

My question is, do you WANT to help me? At the core, do you have any desire at all to help?  Next piece...if yes, have you ever said, or thought, that you can't, or are unable, to help? If so, I am going to suggest that you, one, haven't thought small enough, and/or two, haven't considered just how valuable something seemingly small is.

I do not need you, or anyone to solve every problem - or even any problem - that I may seem to have. I just need you to be a part of a solution. I need you to be willing to see that what you do tangibly, no matter how seemingly small, matters. I have had people tell me that there is the thought that the holes are so gaping some think they can't possibly fill them, and therefore they do nothing.

I don't need things filled. I just need them added to. There are those who try to help, and they sometimes apologize for amounts of $50 not being enough, or hoping that it helps. It absolutely helps. So do the times people actually listen to me, and contribute $1. It all matters. 

This blog has now had over 60,000 views. If each view netted me a quarter, it would help me survive for several months without having to ask for anything. When donation amounts are in the 1000s, they have the ability to essentially "buy" a person's silence. I know it may sound crass, but I am all too acutely aware of the fact that I am breaking rules in how I approach things. 

We have this idea, this rule, that things like this need to be unspoken. I am talking about the types of things no one wants to hear about, so we have a silent agreement. I won't talk about it, and you shouldn't, either. Let's admire the silence, and call it strong and dignified. Let's get offended and bothered when a person breaks this convention, and judge them lacking in some way, as we judge their approach. They obviously are needy, and not strong. 

By doing this, we can likely keep others who may consider speaking up in line. No one likes to be judged. No one likes to be embarrassed. Many want to avoid conflict. We make it uncomfortable enough, and we can minimize our discomfort by not having to face another's discomforts.

If you don't want to help me, then it is a different story. We all have our stuff, and our reasons for things. I can't expect that every person would want to help, and I certainly do not. However, there are times people say they want to help, only to follow it with how they can't. I really want to dispel that latter part.

I want to dispel it, not only for my benefit, but for the benefit of the many others who find themselves in need. And there are many, for a myriad of different reasons. The "I can't help" reason needs to be dispelled for the benefit of us all. We need to stop saying we can't when really...we just don't want to. We have allowed ourselves to say things that are more socially acceptable to excuse us from stuff for reasons that make us seemingly sound bad.

You CAN help more than you realize. It just may be that you are not thinking small enough. But, first, and foremost, you have to want to. 

One reason I think we are so overwhelmed by requests is that we use our logic to guide us. We get overwhelmed by our logic. It becomes too much to consider and cope with, so we wind up tuning much of it out. It is just easier that way. If we could all begin to tune more into what our GUT says about someone, or some thing, we will have a better chance of being able to make choices that are much less overwhelming, and that are much more compelling and effective for all involved.

Most anyone reading this could probably spare $1 a day. Most would likely never miss it. But that is still approximately $30 a month, so it could be a problem, as something in the month might be affected. What about $1 per week? That is $4 per month. How many of you would really miss that? It might mean buying one less coffee per month. 

What about simply $1 per month? Are you going to tell me that you are going to miss it? I think it is more likely you just don't want to make the effort. You just don't want to do it, rather than the fact that you can't.

Of course, I could be wrong. I am not you. However, I raise this conversation as a way to get those who may not have considered this possibility to give it some thought. We deserve better than to let ourselves off the hook this way.

I am going to propose something that I hope you will consider. I propose that you take a look at this conversation, and be honest with yourself about what you truly think. Then, I propose that you consider those who ask you for help from an intuitive/gut place. Is this the right person/circumstance to help? If the feeling/answer is yes, give $1. If it feels right to give more, do. But if you are in a habit of declining all requests, I say $1 so you can start small. You can do a little something to help re-wire your brain and feelings about the requests, and those who make them.

Give from your heart, and refrain from allowing yourself to judge what your gift will be used for. Most people in true need will never be frivolous with what is given to them. It is more than likely those who have never been "there" that will think negative kinds of things, also likely as a "reasonable" excuse not to do anything. It wouldn't be too difficult to find agreement from others for this approach. Others need to agree with you, so their excuses are valid, and validated, too.

We are so "good" to each other when it comes to our excuses. What if we were good to each other by helping another in need, instead. It doesn't have to be a huge investment; any investment in another would do. I truly think we'd get a lot farther as a world and culture - and as human beings - if we could start to break down the types of things that allow barriers to be be built and then continue to stand.

In the end, you will do, or not do, what you do, or don't do. If it truly makes sense to you, and/or fits, then that is truly all that matters. But. If there is any doubt or question in your mind about it, you owe it to yourself to consider other possibilities. All too often we are conditioned by another's ideas and beliefs so fully, we come to claim them, and believe they are our own, when they are not, and sometimes no where even close to truly being ours. 

A possible sign it isn't really ours? A level of discomfort with the conversations we have or the choices we make.

If you are ever in a position that is anything like mine, or another in need, you will hope that the kindness of strangers will be greater than their judgments. You may think that is the case, as a general rule, but finding oneself in a predicament like mine shows you that appearances can sometimes be deceiving. It can show you just how contradictory and judgmental and excuse making human nature can be and just how important it is to look good, even when excusing oneself from doing something good for another.

It may be that the things I describe are "human nature." That, too, is an excuse for us to continue on any given path. I don't know about you, but I think we deserve better than to allow ourselves to continue to do this type of thing without question or alteration.

If you want to do something good, do it. If you don't want to do something, at least be honest enough with yourself about not wanting to do it. Be honest about your judgments. Consider looking at things a different way - or not. And consider respecting others enough to either get to know them better, or at least not being dishonest about what you choose not to do. Odds are, the people you judge - or choose not to help - already know the "truth" any way. One can not deal with a situation that has similarities to mine - for any length of time and not be able to see things more clearly than most they deal with.

It is late. I am tired. I hope I might have made a bit o'sense, and perhaps given you something to consider. 

It might be odd to end this with a request for you to check in with your gut regarding helping me. Would that mean everything I said was leading to that, and somehow discredit my overall conversation? 

At the same time, I do need help, and for some it might seem to be an obvious missing if I didn't bring it up.

Do you see how it might be a no win situation for me?  I certainly do.

Having said that, if $1 is something you could spare, and are willing to spare, each month (or even once), and I am someone that your gut appreciates and likes, and you are willing to listen to it, I have the perfect idea for you to consider: Patreon.com/jolope thank you.

Thursday, April 23, 2015

Did you miss it? Here it is.

As promised. Here is what I wrote late last night/early this morning. For whatever it is worth, it enters the "record" by being here. I am not doing much better this morning. I woke up with my eyes so swollen, they looked half shut. Talking about this is not magically having it go away. It seems to be sticking around for a bit.

Prayers are welcome, but if you aren't going to help me in a tangible way, if you aren't going to do something directly on my behalf, please do not tell me right now about God, or your prayers. It is not that I am ungrateful, or that it is unappreciated, it is just not what I need to hear right now. I hope you can understand. Thank you for any understanding you might be able to conjure up.

It all started about 9:00 pm last night

Feeling out of sorts. Everything feels off-kilter.

Then...around 2:00 am this morning...these posts...one after another...

I can't stop crying. I can't seem to shake this awful feeling. The only way out is through...sooooo much pain...sooooo much fear...I am overwhelmed.

Is there any point to my life? Any at all? It sure doesn't feel like there is...

No one knows what to say. No one knows what to do. That includes me. I am at the end of my rope. I had someone tell me I could change my world, but then realized it wasn't a thing to say. It was someone who knows I have tried and done as many things as I have been able to. It is one thing when you are healthy. The day cancer showed up, so many damn doors slammeshut. I think, among other things, I am in mourning.

If people say they care, is it like the tree that falls in the forest if they do not say or do anything? Does it make a sound...do they really care? I don't know the answer...just asking the question.

A woman took some diet pills she got in the mail. 2 was a lethal dose. She took 8, I think...she died fairly quickly. Got me thinking in ways that probably weren't the best...

Right now I just don't give a damn about anything. If I did not wake up in the morning, given my current state, I think I would be just fine about that. Provided I do awaken, and the clouds do clear, I will probably wonder why I was so upset. But. Getting there. That is the thing. Everything is as dark as dark can be at the moment.

I am exhausted, and should probably sleep. But I feel numb. I also can't stop crying at moments between the numb. My eyelids are swollen. My stomach and chest hurt. And I am acutely aware there are those who will think my posts are TMI. Breakdowns should never be public. On Facebook. NEVER. Well. Never is now. So many think I am just fine all the time because I seem to be. Well. The fact is I am not. I am not ok. And now you get to see just how not ok I am.

I definitely feel like I am losing it - if it isn't already gone. Day after day I do whatever I can to help myself. I make posts. I ask, plead, beg for help. It is exhausting. It has taken a tremendous toll on me, on top of the facts of my life that necessitate me having to do that in the first place. Do I want to do it? Hardly. But I need to. Without help, I am sunk. As it is, I am sinking - fast. Many just have no idea the toll this has taken on me in so many ways. Well. Maybe these posts will change that, a bit.

I have never been drunk. But if I was to imagine what drunk was like, I would imagine it would look something like the tangent I am on tonight...wonder what the hangover will feel like tomorrow?

Ever watch someone fall apart? You might just be doing it at the moment.

I think about giving up, I wonder who would care and/or notice. Of course, i suspect there would be some who would. At the same time, from where I stand so many seem to be off living their lives, it feels like it would be a blip, and then business as usual. Would it really be that way? Maybe not. But I am not exactly rational at the moment. I just know how it feels most days.

The scary thing about giving up? cancer would likely happily finish me off. There is a fine line I walk between life and death. I resisted chemo for a long time because I felt that chemo took me away from myself. I don't know how much of this to blame chemo for. After all, a lot of my life outside of it is pretty messed up. However, my life is greatly impacted and limited by the effects of treatment. So it is probably a neat little package of goodies that causes me all this grief.

Does anything really matter? Or are we just so desperate to believe that things do? Again. I have no idea the answer to this question. Just posing it.

So much pain...if only it had monetary value. I would be a wealthy woman.

Did you miss it? (It was spectacular)

Did you miss it? 

Late last night, early this morning I fell to pieces. 

It was spectacular.

I posted a series of posts on Facebook as I alternated between sobbing and feeling numb. I only got a couple of hours of sleep. If you want to rubberneck on a car crash, keep reading, as I feel the need to share about what is going on. If not, steer away now.

Why am I sharing? That is a good question. I think part of it is for all of those who think I am OK because most of the time I seem to be OK, even when my version of OK is dubious. I think after you read what I wrote, there will be zero doubt that I am not OK. It is my hope that it will remove any question in your mind about the point I have arrived at.

There is a part of me that is angry for a number of reasons, some of which I suspect I know, probably many of which I likely have no clue. I woke up this morning to someone who sent me a message, with the best of intentions, I know. But I had a reaction to the message that I want to share with you, as I think it is something that broadly could fit what others feel and experience, too.

The person said my situation has people feel helpless, so they withdraw, and pray for help for me. The thing that I do not think that many get is that they are not as helpless to help as they give themselves credit for. I do not expect that all of my problems can be solved by anyone. However, a lot of my problems stem from things that could be helped by the interaction of others. And while others retreat to their helpless corner and do nothing, hoping somehow, magically, help will appear, I am floundering, even drowning. 

I have referenced a tale about how a flood came, and a man needed help. Three different people came by offering rescue. His response was that God would save him. He wound up dying. When he got in front of God, he asked him what happened? God's response was that He sent 3 people to help. But the thing is, there were 3 people who showed up. 3 people who took action. They did not sit back, and think someone else would help him. You don't hear how they sat back and prayed for him to receive help. They got into their vehicles, and they showed up, offering to tangibly help. 

It may be uncomfortable, or inconvenient, to help, but people can help a lot more than they are. And I am angry about the fact that they are not. Am I angry at THEM? It might seem that I am. But I am not so sure that is the case. 

There are lots of reasons people do not help, and I think it possible I am angry with the way people are trained to be in situations like this. I am angry with the mindsets that allow people to sit back and do nothing other than possibly pray when another human being expresses a need. Angry that people will donate to people and things and situations that might not be of as great a consequence as someone who desperately, immediately needs the help. It is as though the person worth helping is the one who doesn't ask for it, the person who doesn't have the pronounced, verbalized need. It is as though the person who doesn't speak up, or has some stranger speak on their behalf is strong and worthy while the one who speaks up is in some way weak and unworthy.

I am angry about those things. 

I am angry at how so many doors slammed shut the minute cancer showed up. I can talk about the good things that showed up, and put a smiley, "everything is ok" face on, but the fact is there is often much more overcast than sun. And when that is the case, even if I know deep down the sun is there, if I can't see it, feel it, experience it, does it really matter if it is there?

I know part of my anger is mourning. It is mourning for the loss of the things that may never be. When growing up, and relatively healthy, you think you can do anything. Be anything. You can create your world. When suddenly your world revolves around an illness and treatment, a lot of that goes out the window. 

There are so many emotions and feelings I have, and I just don't know what to do with them, other than to give them a voice. I sometimes feel like the person who is talking to someone, and the other person doesn't seem to get it, so they raise their voice because, obviously, the person didn't hear them. Somehow in the raising of their voice, the other person has to understand, right?

I just can't help but think that people aren't hearing me, because if I was being heard they would have to do something. It is the "only" reasonable explanation why plea after plea seems to go unheard by a majority of those who are aware of it. The people just don't hear me. That has to be it.

I realize that much of what I am saying is likely to cause many to become defensive, and to run counterproductive to any result I may say I want and need. But the thing is...the things I am saying are my reality, and they have been my reality for the better part of 3 years now. And I have discovered that people will think and say and do or not do whatever they will they will think and say and do or not do with very little thought of me or input from me. People have an idea of who they think I am, and no matter what I do, or don't do, it will support their beliefs of who they think I am. I really don't have much say, if any, in the matter. If I actually did, I would have to think and hope there would be a much different reality for me to talk about.

Yesterday someone close to me told me I can change my life. He soon realized he said something not so smart. I don't know if he realized how much it hurt me, and just how insensitive the statement was. He, of all people, knows how hard I have tried to help myself, and do what I can. And this was someone close to me. What hope do I have for others who don't know me - to even remotely understand what I am dealing with, and who don't know all I have been through, and done. What hope do I have for them to understand my exhaustion and feelings of futility? When those closest to me go on with their lives with seeming little thought of me, and with limited, or no, offers to help, how can I begin to imagine getting help from virtual strangers?

I get a whole lot of cheerleading from people. I am supposed to stay strong. Is supposed to do a lot of things. But it strikes me that the cheerleading I get is like cheering for a wounded player on the field. The player is lying there, injured, and play has stopped. Is there really any point in cheering him on to move the ball down the field? The player needs to have the focus shift onto to him, and not the play. He needs someone to come no help him, and maybe even rescue him because he cannot get off the field on his own. 

I do not need cheerleaders. I need help. I need people on the field with me. Even if people don't know what the problem is, or how to help, I need them to ask me how best to help, and for them to do the best they can to get as close to what I say I need as possible. I need them to recognize that that I am not asking them to help, or carry, the whole team. I am just asking them to help me in this moment. I need them to understand that without help, I may never make it off the field.

I had intended to share my Facebook postings here...but this entry is already long enough. Curious? Read next post. (http://anewme515.blogspot.com/2015/04/did-you-miss-it-here-it-is.html)

Tuesday, April 21, 2015


Feeling incredibly lonely.

I am not sure what brought this feeling on, but I do not think I can discount the silence off many in regard to recent posts. There is something about the silence that feels like being ignored. I realize it may not be that, exactly, but it is the way it certainly feels, at least at times.

I think the fact that I am facing so much doesn't help, either. Having to explain to Disability how miserable my life is was depressing. It is hard to look at what my life has become. One question they ask is "where do you go regularly?" My immediate, and only, answer? Treatment. 

The absoluteness and completeness of the answer was devastating. There are times I rarely leave the house - for days. 

They ask so many questions. The answer they expect is "yes" or "no." I can't help but wonder who designed the questionnaire. How many "disabled" are able to give absolute answers to many of the questions? I doubt many. There are very few things that are absolute.

One minute to the next things can change for me. They can vary by minute, day, week. Depression like I am feeling at the moment pops up whenever it feels like it - without the slightest bit of predictability. The same unpredictability occurs with my energy. Sometimes it seems mostly fine-ish. Other times it snuck away when I wasn't looking.

I am in bed as I write this. I have wanted to do other things tonight, but just could not bring myself to any kind of "productive" point. Except, perhaps, this one. Although It is questionable to me that this moment be considered anything more than a purge. Although, I suppose, in fairness, a purge can seem to be productive.

I don't really want to write. But I feel driven. I suppose I need to push stuff out, as I feel tears welling up the farther along this path I go.

I am incredibly sad. Deeply, completely sad. I feel as though I have no life. Is it totally true? Nope. I know it isn't in the grand scheme of things. But the grand scheme is just too grand to latch on to. In this moment I wish I didn't have to go to treatment. In this moment, I wish there was a place I could retreat to. In this moment, I wish there was more evidence that I am heard. 

In this moment I wish I had a partner who could wrap his arms around me, and give me the illusion that everything was ok. I had that feeling with someone once, and it was amazing. The problems of my world just did not exist for that time. There was so much peace. I was never more in the moment, and that moment was more special than any words I could come up with to recount it. On top of that, many of those moments were strung together, allowing me to disappear in the nothingness for a time like few things have ever allowed.

I get really sad when I wonder if there will ever be someone like that in my life again. Is "that" part of my life over? How am I ever going to meet someone if I never leave the house? How can I meet someone and tell them, "oh, by the way, there's this little thing called cancer..." How many would willingly walk into something like what I offered? I seriously doubt there would be many, given the distance many keep from me - in general.

I am really sad, too, by the actions of those who cannot seem to understand what I am dealing with, and how their actions, or lack thereof, affect me. There are so many things that go through my mind at a time like this. And there is nothing I can do about them. The most I could do is "accept" them, but so much about the situations just isn't acceptable. I am supposed to be the understanding one, though. I am the one who is supposed to cope/supposed to deal. I a. Also, often, the one in the wrong.

There is just so much pain bubbling up. So much. I have gone from a few tears to outright sobs.

I want to believe my life means something. But times like this I can't help but question what the point of my being here is. So many seem to be off living their lives while I feel like I am barely sustaining mine. Most who are doing their thing probably have no idea how deeply affected I am by the impact of this piece of life. In some ways, it may be no different than it has ever been. At the same time, there is something very different.

I can no longer live under the veiled illusion of a tomorrow. When people make plans years out, a part of me twinges. Will I even be here then? Does my existence in their life mean anything today when their choices seem to run counter to what I might hope our relationship/dynamic will be? There are times I am not sure there is any awareness on their part of what I might be dealing with. Other times, I wonder if the attitude is something of a shrug.

It could be more than I even realize, but when no one tells me how they really feel, or acknowledges anything in regard to me/the context of my situation, there is no way for me to know. So much from all sides of the cancer coin is shrouded in silence. Nobody says nuthin'.

Then there is the part of me that feels like I can't expect anything of anyone. It is the part of me that understands all too well why people would want nothing to do with me. It is a part of me that says, "what do you expect?" If I am really honest, "What do you expect? Why would anyone want to deal with someone who has no life? Someone most probably figure is going to die? What do you expect from those who think there is always a tomorrow, and put things off like they always have?"

Or something like that. It is a jumbled mess made worse by this depressive cloud hanging over me. 

It is so much easier...

I saw someone trying to raise funds for a cause. She asked for people to donate whatever they would spend on their lunch. It is so much easier to ask for something outside of ourselves, that is not for us. There is so much more I could say and do, if the help needed wasn't for me. It is easier to ask for an organization, rather than an individual, and yet many times what organizations receive do not trickle down to the people they are supposed to help.

I have asked for help for the better part of 3 years now. Some who may read this may know this fact, all too well. I definitely am all too aware of it, and it sucks more than most likely realize when they likely focus on the fact that it is something I do bring up a lot. I imagine there are some who say, "there she goes again," and likely tune me out.

I can't say I blame a single person. It has to be hard over there, but If it makes you feel any better, I can practically guarantee you that it is harder over here. To even have to be in a position to feel I need to ask, even beg, is nothing I would wish for anyone. One doesn't just decide to ask for help. At least this one doesn't. The circumstances push for it.

What would you do if you had no money coming in from a spouse or family or job? What if you had run through your savings? What if you had tried the public assistance route, and were found lacking? One couple in Ohio recently, in their desperation, committed suicide. If you wanted to live, and nothing seemed to be working in a way that you could be self-sufficient, you really would have no choice, but to ask. And when there was mostly silence, ask again. And when there was a trickle of help, be grateful, but as it wasn't enough, ask again.

Can you imagine needing help, but not even being able to get people to understand just how important, and precious, and needed even just $1 is? For most, $1 is such a small percentage of what they have available to them, and yet there are some who probably, likely think you are asking for $100. They say they can't afford to help. How would you feel if you heard that? 

My guess is, you would likely react the way I am. You could acknowledge another's reality,  but wish desperately that they might be able to see perspective that might allow them to help you...or even someone else, as you would recognize just how many people could use the help. Odds are they would not miss that $1. For most, there is more coming at some point, and worst case, it might be a minor inconvenience to help another that way.

Is this for all people, in all circumstances, at all times? Not at all. But it is for many more than many might think. If you haven't reached out to help me, or won't because you think someone else will or should, you are in the majority of those who know about my situation. You are in good company. 

Sadly, I, too, am in good company. 

If you would like to help, there are a myriad of ways. Patreon.com/Jolope is one. Heartsgiving.com gives other options - including a tax-deductible one. I am nearly out of money and undergoing chemo with no end in sight.  I am exhausted, but have still tried to help myself, and still reluctantly need to ask for your help. 

If you want options, I can give you some. Just ask. They are also sprinkled all over my stuff...there are so many ways you could do something to help me or another...If you are willing, you are able. I am even willing to let others use my work to help raise funds for the things that are important to them. That way it gets to help more than one person, in more than one way.

If you took the time to read this, thank you. Now please consider going out and helping someone who needs it. It doesn't have to be anything big. It just has to be something. It matters more than you may realize. You matter in the life of someone more than you may ever know. 

Please. Just do it. Thank you.

Thursday, April 16, 2015

I can't stand my brain

I just spent over an hour looking for 2 of my sketch books. At first I thought I was looking for the first two, and I thought they were together. I looked everyfreakingwhere I thought they may be. I tried to remember when I last saw them. Did I take them somewhere to show someone? Did I forget them somewhere? Flashes of forgetting my phone on the train when in treatment were going through my mind. The longer I looked, the more upset I was getting. At some point, I even burst into tears. I can't remember a damn thing.

There was nothing to latch onto. Nothing.

I am so tired of this.

Many times I manage to keep the things that are ultra important in certain places so this kind of stuff doesn't happen. I found one of the two books in a room that I did not expect it to be. I don't even remember why in the world it was even there. Then I realized that I was missing the most recent book, and I was even more upset because there were new drawings yet to be scanned in it.

Eventually something told me to look in a place I hadn't looked, and I found it. And that was only after calling two places I thought I might have left it - two weeks ago.

Relief. But I am so freaking tired now. I also was going to try to go to the grocery store tonight, but it's now too late. I wasted so much time determined to find the books. It was like a piece of me was potentially gone.

I really can't handle how my brain disappoints me and messes with me these days. That, more than anything, is the biggest reason I can't stand chemo. I really do feel like I lose a big chunk of myself. It is something my doctor doesn't seem to understand, at all. If anything, he just shrugs about it. I suppose he thinks there is nothing that can be done about it with medicine, so there isn't much of a conversation to be had.

I am so incredibly overwhelmed by all that needs to be done. I have had a break from chemo, but it is just about over, and sadly I never get done all that I need to in the very short window that I have that I almost feel normal before it all begins again.

I spent the better part of the day also determined to clean up a huge mess in one of the rooms that I occupy. I am still not done. But there is no way that I can finish now. If anything, I just want to go to bed at this point.

Tomorrow I really have to work on doing the paperwork for Disability. I am really not having a good time with that, either. I received a letter that makes me wonder what they will think of how I am affected by everything. I wonder if they "believe" in chemo brain. I can't even begin to imagine doing a job now. My brain just leaves me way too often. I often can't focus, and it takes a great deal to focus when I manage to, at all.

I really am oblivious to how things are until they get to an escalated point, and I urgently need to deal with something that my brain is ill equipped to do. And then, I freak out.

Logically, it may seem much ado about nothing to an outsider, but for me it is the tip of the iceberg of the type of thing I have to deal with.

My life is a big mess. I got reminded of that tonight as I was trying to find those books. I am so fed up with everything. There are times I would just love to go through everything and just throw it out. I know it is a reaction, and I will likely regret it at some point, but there are times things are just so damn painful. The mess I cleaned up today? I had to do it, it was getting to the point that I had several near misses of really hurting myself in trying to compensate.

People may think I can do stuff because I seem to do stuff. But doing something once in an extended period of time doesn't seem to me to really count. Guess it will be interesting to see what those at Disability think about it all.

PS Please check out Patreon.com/Jolope and become a patron. You can do it for as little as $1. If you've ever thought of helping me, I really need your help now, and this is a good way to do it, and your contribution will really help. Thank you.

Join me?

Yesterday 3 new people became patrons. One has become a supporter in other ways, despite not really knowing me. Another I only "met" through Facebook in the past week, and yet another I did not even know of, until yesterday. It means so much to me when people I do not know/barely know are willing to step up on my behalf, especially since that is the exact reason many would not be inclined to step up. 

When I decided to go public with what I am dealing with it was with the hope that if I put myself out there...my name, my image, my business name, it would give support to me and my story. It would provide a form of validity. The more people knew, the less they might be inclined to think me fraudulent. It hasn't exactly happened that way, though. 

People often question every single piece of my experience from whether I am actually legit to how I interact regarding my experience dealing with cancer and its ramifications. What others haven't said to my face, I have heard via others. And there has been much that I have still received directly. 

It has been beyond hard. Quite frankly, going public was nothing I wanted to do. But I knew I needed help. I also knew that I could never play the game most do in our culture. I knew I had to tell it all, even if I was uncomfortable, and even if it made me look bad. I couldn't do the cancer dance trying to be someone I wasn't, and trying to look good in the hope that people would like and help me.

I knew it probably would not be easy, but I underestimated just how hard it would get, especially when revealing myself did not open the financial floodgates. I still do not want to ask for help, but I need it more than ever. It is one of the suckiest paradoxes - ever. EVER.

I have tried to refrain from asking for money directly. I have tried to put stuff out in the world that people can make an exchange for with a donation. Over the years of working for myself, I have created MANY things, and have shared them, and of myself freely. I have often helped others - sometimes at my own expense.

If there was a Karma Points Bank, I'd like think myself a wealthy woman. I have gotten incredible joy in being able to contribute to others. I was also extremely self-sufficient and independent, dealing with cancer has knocked me for a huge loop. It has brought so much good, and so much not good. It has been a smorgasbord of life experiences and emotions and perspectives, and amplified any aspect of life, both "good" and "bad" that you can think of.

Many people have no clue the range of stuff I have had to deal with. My guess? Many don't want to know, and I can't say that I blame them. But the thing is, a lot of what I deal with isn't exactly cancer-centric. I see parallels to so many others dealing with so many other types of things. I see how we are treated in similar ways. I see the negative notions people have, and the misconceptions. I see the judgments. I also see the unexpected kindnesses.

I am very clear this journey is not just about me, nor is it "just" about cancer. This is about something much bigger, much broader, and much more important than"just" me, although I, and all the others who struggle in big ways are very much important. Each piece of the puzzle of life plays an important role, even though we tend to forget that part, until it becomes something we need to face for some reason.

Ironically, perhaps, the less help I have received, the more verbal I have become. I have nothing to lose by speaking my mind at this point. If there was ever a plan, this feature would seem to be a worthy part. So many people never say what they truly feel because they feel it would cost too much to be honest, not realizing the significant personal cost of not speaking up. 

While perhaps worthy, it isn't something many - if any - would logically be willing to sign up for. It is incredibly exhausting. It is demoralizing. It is very hard to be seen as inferior, deficient, invisible. Yes, "seen" as invisible,

It is hard to keep going at times. A lot of the time. It is made worse by the fact that much of my life currently is more about survival than actual living. As much as I wish money wasn't an issue/consideration, since it is for those I need to deal with, it needs to be for me, too. I have exhausted myself in exhausting ideas of what I can do to help myself.

Many have ideas of what I can do. While I am appreciative, I don't need ideas. I need actual, tangible help and support. I need others to act on my behalf. I need money.

I am laying in bed as I write this. I do a lot from here, especially when my body feels so heavy, and I can barely function. At a distance I may seem just fine to you, but you only see a sliver of who I am these days. You only get to see the pieces of me that show up publicly, and if you are like many, the less than pretty ones tend to be ignored in favor of the stuff not so unappealing. Better to think me OK, than not, especially if not inclined to help. It certainly helps to alleviate any signs of possible guilt, don't you think?

I know much of my experience has value to others. I know that because people show up and tell me it does. I know, too, that there are silent lurkers. I know this, too, because there have been those who have also shown up, and let me know how my Words and journey have impacted them.

I am asking that if you are reading this, and especially if you are hanging around, that you give me a Vote of Support via $1. It would be a way to let me know that you are not only listening, but are appreciative of my life, and its message. It would mean a lot at any time, but now in particular, as I am greatly concerned that I could be out of money within a month. 

I would love it if I could continue yesterday's momentum. I have 12 patrons at $120. That is an average of $10 per patron. If I could keep that average, I would need just 88 more people to get to $1000. While it won't solve my problems, it will help me breathe a bit easier. It is really hard to have my main "job" be trying to find ways to fiscally survive. 

As I have said, I do offer a number of things, so if you want something for your donation/support, just say the word, and let us try to work something out. I sometimes get scared if there ever gets a point that I really can't do anything what that will mean, but I have to hope that will never happen.

You likely have no idea how difficult it is to be a shadow of your former self, to have to rely on others when you'd rather just keep going on your own. It is difficult to live with the fear of things getting worse, and the uncertainty of what comes next, especially since I do not own my own home, have the ability to rent somewhere, have no husband, and no family supporting me.

I would much rather you join me because you believe in me in some way than you feel sorry for me, or want to "help" me. But the fact is that I need whatever I can get right now, however I can get it. 

There may be a better approach to use. There may be better words to say. But this is what I got at the moment, and I can only hope that on some level anyone who sees this will have an appreciation for that fact. 

I can also only hope that people will listen to their hearts, and act accordingly. It doesn't mean, by the way, that everyone listening to their heart will help me, but perhaps they will extend a helping hand to another in need somewhere else, at some other time. 

The world is full of opportunities that way.

If, however, your heart says to help me, Patreon.com/Jolope is a possibility, and heartsgiving.com gives you other options.

Thank you.