Monday, February 24, 2014

"No One Talks About It"

Once in a while I search my name on Google. I am curious where I might wind up. Tonight I found a friend posted about my October trip on Soul Pancake. There were two comments. One was from a woman who had had cancer several times and said that the site was not a "fundraising site." The other was from "stillnotalittler" who said, "No one talks about it? It's the only disease that anyone ever talks about."

What the person did not get was that the thing no one ever talks about is what people living with cancer deal with. Yes. There is a lot of conversation around the topic of cancer, but it is more of a gloss over. It is about fundraising - for a cause. The most verbal about cancer are the organizations that often talk about helping those with cancer, but the funds often do not go to those in need directly.

There are many misconceptions about the "help" available to someone dealing with the illness. I cannot tell you how many times a new person shows up and points me to the same, useless sites/links/companies. So many think that for sure the American Cancer Society could help, right? So often calls to them wind up being referred to Cancer Support Foundation, here in Maryland. If anyone can help, they will. The way they are helping me is to be a non-profit clearing house for tax-deductible donations. Cindy Carter, who runs the organization, tells countless stories of needs that aren't understood, and therefore not addressed.

So many think Disability is an answer. Well. To start, you have to get it. I wasn't eligible to apply for it, until I had a recurrence. And I was denied once because they said they never received my paperwork. I have heard many stories of those who need to seek the aide of a lawyer, who proceeds to get 30% of what is gotten, and then is paid before the claimant by several weeks!

Even when you get it, it really isn't enough to live on, and they must know that because you are allowed to make up to $1000 a month without jeapordizing your payments. Even then, I imagine it will still be tight. In addition, one should be able to get food stamps, right? Well, yes. But they make you jump through hoops to get them, and the amount you get apparently is greatly diminished once Disability starts.

Most people who are dealing with cancer might not even look like it. As a result, others will expect that they can do whatever they need to do. They do not understand what a person dealing with cancer deals with from moment to moment because no one really wants to hear about it - and THAT is the thing "no one" talks about. There are biases and all kinds of issues around a diagnosis that most will never know or understand - unless they personally meet up with it one day.

Because I have been so open, I have had countless conversations with people who fall into 2 categories: those who have no clue about what the "reality" is and those who know the reality all too well, and welcome the opportunity to talk about it. There is a general, overall, feeling that it is not to be discussed openly or publicly. I have even had people tell me my Facebook profile is open in much the same way you would tell someone the fly on their pants was.

I sometimes wonder if people understand that I am doing more than complaining/begging. I sometimes wonder how much they truly understand what I am facing, Even many of those closest to me do not seem to understand - or want to. And if they can't/won't/don't, I wonder what chance I have with the world-at-large.

But the thing that keeps me going are the times that I am made aware of the impact I can have. Someone lets me know what my openness has meant to them. They let me know how they have been touched or affected in some way. There are some who even say how needed what I am doing is, before I ever get the chance to tell them that that is exactly what I think.

It is difficult, though. I am challenged regularly by the ignorance of others. I am challenged regularly to interact with the fears of others, instead of others themselves. The only chance I could have to live a "normal" life at this point would be to stop talking about cancer, and hope to get well because then we could all go back to pretending like cancer never happened. 

I really don't think it is possible, though. And even if those around me could get past it, and forget a fear of recurrence, I don't think I could. My life before cancer was dulled. I, like so many others, got up each day with a blissful ignorance of my mortality. There would always be another day, month, year. Planning for a future that *shhh don't tell anyone* may never come. If something didn't happen now, there was always "next time." I was caught up on the treadmill, in denial that I wasn't really getting anywhere. But, of course, I could never admit that. It would have been too devastating.

But I came to be devastated any way when cancer showed up. It is when I flew off the treadmill. It was when I got to see the illusion that I was living with. I did not know any better what to do in my life, but what I came to discover was that my life still felt a lot different when I was honest with myself. 

When I could see things as they truly were, I could value them a lot more than their fictional counterparts. When I could start saying what I really felt, and could be OK with who I truly was, I found the inner peace so many seek, and likely will never find - as long as they continue to live life in the guise of who someone thinks they should be - instead of, and with an acceptance of, who they truly are.

Now that cancer has entered the picture, my life has more life than it ever did. I also simultaneously have more and less patience than before. More, because I have a greater understanding of jphow good it feels to "roll" with the things that do not go as I want them to. Less because It is like a light got turned on, and yet so many around me are still functioning in the dark. When someone tells me "we'll do..." and it is something built in a "conventional" framework, I can't help but wonder if I will be around to do it. I do not have the built-in assumption that I will be. For me, "there's no time like the present" means more than words because it may be all I have.

The fact is, it may be all any of us have, but it is detail that many of us are all too willing to forget. cancer has the potential to take my life, but the experience of cancer has given me life in a way that I think very few things could. I think it also has the potential to awaken others - as long as they are willing to see past the barrage of distractions that life offers us, and the things that appear to have substance, but are just a mirage in the desert of life.

If we think we are talking about cancer, but aren't making any real progress, then it could be it is because we are talking "about" it. We talk "about" all kinds of things: The Olympics, the weather, what we ate last night, what we are doing next year, but there is nothing inherent in the act of talking that does anything. 

Maybe that is part of any perceived problem here. Talking about something that never changes seems pretty futile, doesn't it? What's the point? It is painful. It sucks. We don't seem to know how to handle it, what to do, or what to say, so let's just ignore it. 

Having said that, often action will begin as talk. In talking, you can learn what needs to be addressed, and how best to address it. And when you begin to transform words into actions, power comes to a place that once seemed powerless. We can't do anything about the things we do not understand, and we cannot understand the things we do not talk about and we cannot talk about the things we ignore. 

So...if we stop ignoring the things that make us uncomfortable and start to talk about them, we can begin to understand things in a way that we can begin to effect a change. And you just never know when that thing you may have been avoiding will show up one day with a full residency in your life. Wouldn't it be best to understand it before it happens? Maybe it never will, but at the very least, it might make you a better neighbor for the person who it does show up for.

In my messages it would seem that that is in part my goal. It sucked to be initiated into the cancer club. Everything I thought I knew about it was pretty much wrong, and there was so much I did not know. If I can save someone from the shock of that, I would like to. At the very least, maybe my speaking up will help those around others dealing with cancer be better neighbors.

A part of me wonders what the odds of that happening in regard to the conversation we have around cancer, but...you know, I really don't want to know. I guess in some ways there are still are still some potentially painful things I am not sure I want to know. But the skeptic in me would like nothing more than to be proven wrong. 

Anyone want to help make that happen? Let's talk.

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