If it wasn't for the fact that I needed help, what I am going to share would be no one's business, but mine. It really is no one's business, any way, quite frankly.
But, for various reasons, people think it is. I understand the logic behind it, but it makes it no less difficult to be the person feeling like she is in a corner.
Yesterday I shared a metaphor with someone about my experience. I feel like a flasher, exposing myself to people, and as exposed as I am, many choose to not pay attention, and keep going.
I do not want to be a flasher. Quite frankly, I want to bundle up. But the times I have seemed to get the most amount of help are the ones in which I am the most exposed, vulnerable, hurting.
But not always.
There are times I need help, and silence prevails.
I am constantly conflicted about how you perceive me and my situation. If I look, and sound good, and am not being treated, well, then I must be pretty OK, right?
If I look and sound the way I feel most days (tired, scared, irritable, unstable, pale, with hair loss, and so on...) then I give you an image to pity or cheerlead.
The fact is, all images of me, visual and otherwise, are me. Each and every one. We are all multi-dimensional and yet we try so desperately to put things into one dimension so we know how to label and interact with it.
It is something that likely has helped us to survive as a species, but it also is incredibly limiting, limited by our perceptions of the labels and boxes we choose.
This morning I keep thinking about how much it would be nice to be able to tell others how and what to think, and how much nicer still if they would listen.
But more times than not, people go wherever they go, and little, if anything, will stop them.
Why should I care what you think? I have gotten so much better at not caring, to the point that I have been called "mean." Am I truly being mean, or am I just at the point that I am clear about the things I feel, and unwilling to play games any more? Or is it the fact that I won't play the games inherently mean because that is the expected norm?
I have so many emotions and feelings right now that I just do not know what to do with. I have things I have yet to sort out or figure out, and the last thing I need is to add the stuff of others. But the need for help and interaction from others makes a commingling of sorts inevitable.
I have already been treated differently because of cancer and its stamp on every aspect of my life. Some of it has come from within, some of it has come from where others choose to go in relation to it.
Like much of life, it is nothing as simple as we would ever like, or at times pretend it to be.
One could possibly argue that what is is a creation of my own making, that I have created what has become my experience. While I cannot negate that idea in totality, my experience has shown me many of the prejudices the "living dead" face.
There are many aspects of a cancer situation that those diagnosed come to face that are remarkably similar because of how cancer is interacted with in the world-at-large. It is a stark and unwelcome reality that many dealing with it seem to be able to escape.
I got news this past week that I am not eligible for HIPEC surgery. How things got to the point that they have is more annoying than anything at the moment.
I do not feel up to explaining what happened, but found myself wondering how many people might make all kinds of assumptions about this turn of events from whether or not my situation is valid to what this means to my life and recovery.
On one hand, if I tell you how things really are, you might just want to help me; you might also think I am going to die. On the other hand, if I don't say much, then you may feel like I am fine, and feel no compelling reason to help.
Imagine, if you can, how awful a dilemma situations like this are for people. If they feed into your picture of cancer-death-dying, how must they feel, especially if they want to live.
How would you feel? Could you easily paint a picture of life and hope when you were painting a picture for others to potentially want to interact with sympathetically, and to offer some form of help?
The two images don't work together. For many who have no clue about cancer, there is a disconnect. The illness cancer needs to look a certain way.
Oddly, perhaps, for many cancer screams death, but there are many these days who get to "live" with cancer, creating the idea that cancer is able to be treated and survived. As a result, some barely blink with a diagnosis.
A woman I met at some point had been treated with chemo for 5 years. Those around her seemed to appreciate it. She looked amazing for what she had been through, but I could tell she was weary.
There is so much to dealing with cancer that is difficult to comprehend in the existing culture. Those who wind up understanding it the most are those who are indoctrinated into The Club. A close second could be the people closest to them, but I have found that even they won't always be able to understand what is really happening, and will at times have their own ideas of how things are or should be.
I need help. At this point I need help more than ever, as I need to explore options outside of the medical norm. I have barely been able to pay bills, and the idea of adding $300-$400 a month in alternatives just is not feasible.
I hate to think that my ability to keep living would come down to this, but it just might. I really do not want to leave this life any time soon, but I have considered that I might not have much of a choice.
For months now I have tried everything I can think of to help myself. Despite being in treatment and having surgery and dealing with all kinds of issues, I have tried to find ways to sustain myself, and have hit all kinds of blocks.
I don't know how much more I can do. I broke down into tears one day this past week. No one should have to struggle for survival on so many levels.
I wish money wasn't an issue, much less such a significant one, but it is, and while I have to focus on getting money, I am unable to focus on what I need to to get well.
Is this how my story is going to end? I certainly hope not, but I just don't know how I can survive without being able to interact with the world in a way that can sustain me in all of the basic, human ways.
It is easier to deny or ignore things when you aren't enmeshed in them. Odds are you can't identify with what I am talking about, and I hope you never will.
At the same time, my reality is a reality of all too many others that is all too often denied. I do not know if the words I say will ever make any impactful changes, but for as long as I can speak up, I will.
I may very well die trying.
PS if you'd like to help, please see previous blog entry about my book and the entry below, too...Thanks!