Sunday, August 9, 2015

All over the place...

have been feeling better than I was, both emotionally and physically. But I am still feeling kind of lost.

How do you plan for a future when you don't know if you'll have one? There will be those who will argue none of us know, blah, blah, blah.

Then, if you say back something about how cancer affects everything, they might say that they may be dealing with something, and not know it. 

Well. I was in that latter case for likely a few good years, and I lived my life -oblivious. The thing is now the blinders are not only off, but I have been greatly affected by the choices I have made, and     have to be acutely aware of the choices I will make.

My range of choices has been greatly diminished by the considerations I must now entertain. It is not the same as everyone else who at least thinks they are healthy. Not by a long shot.

And, as I have discussed before, we often plan for a life that will be better. We plan for a raise, a promotion, a better job, a relationship, a family. Of course, it doesn't always work out the way we want it to, but we have the necessary blinders that allow us to plan, and make decisions, and be relatively optimistic that we will ultimately be able to get what we want.

What happens when those blinders come off? What happens when something happens that permanently prevents something that you wanted from happening?

It is a whole different world, and in a case like mine, it is a huge suckfest. If you ask yourself what you want, it is a hard exercise because ultimately what you want needs to be modified or abandoned due to restrictions now faced. 

Again, I can hear those voices about how it is the same for others. But you know what? It is not. The difference is between choosing from a warehouse of potential options and a small shed.

That might be an extreme example, but the disparity is pretty great. I tell ya, I just want to tell those voices to just shut up. They may be trying to be helpful. They may even make the person talking feel better. But the fact is, they do nothing for me. 

By the time I am done talking to someone they get just how difficult and impossible my situation is. They're not happy about it. Well. Neither am I. 

I am supposed to be happy when certain things happen. The problem is those certain things complicate my life in other ways. So, sorry if I am not as happy as you think I should be.

If I would just stop chemo, and ask the doctors how long they think I have, I might just know what to do. But I have never asked the "how long do I got?" question, and I am not sure if this is the time to start. 

Doctors aren't God, any way. So who knows what would really happen if I got a timeframe. Others who have gotten one have defied it. 

Some decisions I have considered making others have thought not so wise, but their opinion comes from one who may have an extended future ahead of them. For someone who may not have one, maybe it is not a bad decision, at all.

It is nearly impossible to talk to anyone about anything these days. No one I know - with perhaps one exception - has any concept of how my life and decisions are affected through the filter of cancer.

They may note cancer as part of the equation, but it is often a secondary thing, or pushed aside altogether, as though everything is all just the same as it is for anyone else. So it's like their attitude is, "yeah...you're dealing with cancer, but so what?"

Said, or intoned, or inferred in some way so easily by someone who just has no freaking clue what I am dealing with. They may think they do, but none, really. And then I have to go through everything with them about everything so that they can understand why something is not truly an option. At that point, they may consider me helpless because I just won't listen. 

You see how you feel in my shoes. Odds are you never will be. Fact is, I hope you never are. But if you truly sat where I do, I doubt you'd say and believe half the stuff you say and believe. 

I imagine some want to believe there are answers for me. Better to believe that than the currently perceived reality. Better to believe me stubborn and hard headed or negative or stupid than believe there are so few options.

The fact is, money is a huge part of my dilemma. Having more won't necessarily solve my problems, but it would give me more options - which would greatly help. But the path to that happening is one of miracles. I would need a miracle for me to get the kind of money I need to take care of myself the way I need to.

And, sadly, money is auch a dirty word. Getting help of that kind is next to impossible these days. I don't seem to have the most marketable, feel good story that makes people want to help.

If you were me you'd understand why I often wonder if it is worth continuing to try to live a life and be here. There are many times I think it really just doesn't matter, that I don't matter to people. I say this because so many are just watching me drown and not helping. How can you watch someone in need and not help - especially if you care about them?

Maybe it isn't a "good" conclusion to come to, or even a "fair" one. But the thing is, if you were in need and most (note that I did not say "all") around you did not help, what conclusions would YOU come to?

I often get into trouble because people think I don't appreciate what I do get when I express what I do not have. That is something they make up, as I DO in fact appreciate every $1 that comes to me - even if it is "just" $1.

But when what you have isn't enough, and the need is greater than what is coming in, what does one do?

I imagine someone drowning would have a hard time focusing on any good, given the urgency of the situation. Plus, you wouldn't likely expect a drowning person to focus on anything - except, perhaps, surviving.  

And, yet, when a person is metaphorically drowning, they are treated quite differently. In my experience, there has been more skepticism than compassion. People say I am negative, and yet their negative assumptions allow them to feel Ok about judging me and not helping me.

I can be logical about this all, and understanding. And often I am. At the same time, I watch not only what does - or doesn't - happen to me, I watch how others in the world are affected. 

I know I am not the only one facing issues like these. And, the fact is, I don't think it should be ok for us to think, "This is just how things are. This is just how the world is," and just leave it at that.

The problem is that this is coming from someone in need, and therefore all too easily discredited. It becomes about me, my need, my anger, me being disgruntled instead of it being about a bigger picture.

The problem then becomes that do few who have no need like this and no frame of reference for a situation like this, have very little reason to speak up. Given a chance to, very few will. Most who know what I am facing won't even say anything to others. It's too uncomfortable. Heaven forbid they speak up for someone they say they care about. If they won't speak up for me, and I can't speak up for mysrlf without causing issues, what the hell am I supposed to do?

I am fairly certain at this point that many people are thinking they wish I would die - or get better - already. They're probably tired of hearing about it.

And, as far as I know, my silence on social media about my situation has most just going on with their lives. Very few ever even shared about me, my situation, my blog, even when I was actively posting. It is partly what kept me going for a while. If I didn't say something, who would?

After a while, though, I felt people just didn't want to hear it. I also got more grief than I needed (not that I needed any) from some of my posts. I also noticed that I was unfollowed and blocked by some who I would not have expected it from. I also wound up blocking someone for the first time because she would contort and distort my posts in such a way that suited what negative things she wanted to believe about me.

Apparently my desire to share things in an open way started to backfire more often than not. And I just could not handle it any more. It is hard enough to deal with the crap I need to reluctantly deal with.

What do you do when you just have no idea what to do? What do you do when you've asked/begged for help and haven't gotten all you need? What do you do when you don't have the means to survive in the world within its current structure? What do you do when you've been open and forthcoming, only to have others use what you say against you? What do you do when it feels like so few actually give a damn about you, or others  outside of their sphere of experience?

I am not asking you for answers. But I would not mind if you became an answer for someone in need. Things may not be easy for you, but there are too many who have it way worse. I guarantee you you can help in some way, if only you let yourself. Even in my predicament, I have helped others. I have done more of it now than I ever did before when I had more.

It is my hope and wish that people bevome more aware and willing to help others without having their own crisis, first. Maybe there would be less in need in the world if we could see past what we  think we know. Maybe there could come a time that situations like mine would not exist because there will be people and mechanisms in place to prevent it.

I realize I may be dreaming a large dream. But that's Ok. No one should have to face life threatening crap alone, struggling for money while they struggle for their life. No one should be without food or shelter or proper clothing. 

If only we could find whatever it is in us that says these things are ok "for other people," and have it switch to not ok/not acceptable. I realize the problems seem huge. How can one person make a difference?

By making a difference for one person.

So even if you don't want to help me, there are likely many other opportunities to help others...please consider taking one.  

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