Lately I have been posting more directly on Facebook. It's not a good idea. It creates double work for me. I think these are the most recent updates. I am not sure if there are repeats, but I don't have the time to check, and if I don't do this now, I may not. I haven't taken any time to edit or re-work them for here, but I wanted to be sure the bulk of the things I say are in one place.
Please know, too, that when I am on the road, there is no telling how the blog will look. They may have typos and they may have different fonts, and they may have no structure or pictures, or anything. I am going to make things really easy on myself so I can not be tethered to technology. Having said that, though, I am going to try to do hangouts and do my radio show. So we shall see how it goes. See Facebook.com/Relatingtocancer to keep up to date on what is going on. I have a few people who will try to help me keep things up-to-date there.
Thanks for your understanding.
Living while preparing for your death...sucks. No wonder we don't do it. No wonder we avoid it. No wonder we act like everything is just fine and keep going. It really feels quite surreal. It feels like I am preparing for a trip I may or may not take in the not so distant future. I have heard of people who don't care about anything if they know the end is coming. Me? I am thinking about how it will affect others and trying to make everything work so no one has any concerns. Ironically a part of me feels like it won't be necessary. Does anyone really know when their time is coming to an end? Is this a sense of denial I feel, or a sense of living? Maybe it is a bit of both. And in the end, I am not sure it matters which it is/what it is.
I know this does not apply to everyone who may read this...so...if it resonates for you, then it is for you.
I know my situation sucks, and maybe you do not want to hear about it, much less "burden" or annoy anyone by sharing what is going on with me. I get it. The thing is, while everyone does what you do - maybe nothing - there are too many people like me who are in trouble because they are ignored or discarded. If you have never been "here" you have no idea how incredibly difficult it is to "just" survive, and I hope if you ever do get here you do not get the eye-popping shock many do. You may think you know what would happen, but I would place odds on you being surprised by who disappears, who stays, and those who are new to enter your life. I have tried my best to live in the last year and a half. It had been very difficult, to say the least. I have felt close to giving up many times, and pulled myself back from the brink just over a week ago. I used to find my value in being a certain way, and it no longer works. I have value. Tremendous value, and a tremendous voice that I so desperately want to use...not just for me - but others who know exactly what I am talking about, and feel unwilling or unable for whatever reason, to speak up. You may not realize it yet, but you need me to get out on the road. You need me to speak. You need people to pay attention to what I have to say. As a culture, we need it. I do not know how much time I have left. I hope it is years. I am hoping for the biggest miracle of my lifetime. But this could also be it. With, or without, your help I am going to make this trip. With, or without, your help I am going to speak to anyone who is willing to pay attention. This is the month of pink, and I am not a fan of the reason or origin of why. However, pink is considered by some to be a color of love and healing, a color of the heart. If I am going to leave this life I am going to leave with as much heart as I possibly can. I will do it with, or without you, but I would sooooo prefer it be with you. Please join me. Please share about my trip. Please make this happen in a big way. This can be a gift for all of us. Thank you. Http://relatetocancer.com/. See black and white banner at the top of the page for trip details, and how to donate.
I talk a way these days in a way I never thought I would/could. I am so grateful for what has been done for me. So many things add up. And yet, the gravity of my struggle makes it difficult to act like everything is fine - because it is not. My life flew out of orbit last May. I no longer am in the world that most function in. I have not been able to plan much more than what is in front of me. I now might be seeing the end of the road, while most of the world willingly denies that there is even an end. My perspectives now are very much at odds with who I once was. Many times I think I am talking to my younger self when it comes to the things I say. I wish I had done things differently. I helped others, but I wish I had helped more. I felt I couldn't. But I could have. It wouldn't have hurt me a $1 here, a $1 there. I believed I couldn't, so I didn't. I wish someone had challenged me. But no one does that, "please" "thank you" "anything you can do." So polite. Mainly the facts, minus the emotions. If I was alone in this, maybe I would not talk as I do. Maybe I would think something was wrong with me for feeling as I do. But I am not alone, and there are many stories that are left untold. I don't want to piss people off and upset them by what I say or how I say it. I would rather they be pissed off and upset by the fact that the types if things I - and many others - are facing are happening. I do not know if I can, or will, make a difference, and I do not know if I am doing things "right," but I really do not know how else to be. How does one live and die at the same time? Although we all do it. I guess ignoring and avoiding mortality serves a purpose. The problem is, though, that life without the lens of mortality can often be sqandered. The irony, perhaps, is that the person who is most aware of the finite nature of life would likely to be the one to use it the best, but sadly, would be just as likely not to have access to it.
It just occurred to me that while my situation in many ways is not unique, a person who does not know that may think I am alone in my "misery" and "suffering" and "desperation." I may seem to have it less "together" than someone else because someone else you know may never talk about things, and seem to be just fine. Well. I hate to say it, but odds are fairly good that those who are silent and always seem to be positive and smiling have a lot more going on but feel they cannot be open and share what they are experiencing.
Is it in all cases? Probably not, but likely in more cases than most would want to acknowledge. Very few want the "bad" stuff - keep it to yourself. But what if the silence only makes it worse?
It is all too easy to silence or ignore another - but when "another" becomes you, then what? The type of thing I deal with is not only "cancer" related. There are many more people suffering, too, from the inability of others to cope with what seems to be negative.
This is not just about me or those dealing with cancer. It is about a MUCH bigger picture. Discomfort often stems from the unknown. The more known something is, the better, perhaps, it is understood and tolerated and interacted with.
Silence only hurts those who are suffering. On the other side if things, there are many who know the pain. They have witnessed it. Things said can run too close to home. Part of that pain they witnessed may have been from the silent suffering of their loved one and the effects of the reactions of others, or fears of what those reactions might have been.
I don't know that there is a "fix."
But what I do know is that we can do better.
I suspect that if someone was saying these things, but was not intimately affected in the way I am, people might react differently. Maybe they would even tie a pink ribbon on it, and do walks.
We humans are wired so strangely...and yet, it all makes perfect sense. Maybe it is time to stop making do much sense.
In the novel 1984, the main character, Winston, is considered crazy in the world in which he lives. The reader, though, identified with him, and sees the world in which he lives as insane.
In college, I wrote a paper (one I was quite proud of!) in which I made the case for Winston's insanity. How? By looking up the definition of insanity.
Guess what? It is contextually based. So anyone who steps outside the norm becomes someone looked at differently, and potentially ostracized.
I would love to create a new norm. I am not sure what it will take in totality, but I know silence is not going to help.
Please help me make my journey not only happen, but help it be a success. Help me get people talking. Help me help others to feel safe in sharing what they are experiencing without fear of how they will be treated as a result.
In helping me, you might just help yourself.
See http://relatetocancer.com/ for details. Click the black and white banner at the top of the page for trip details. If you don't see a way you can help, but want to, make one up. Or contact me, and let's talk. Sharing this helps, too. Thanks.
I leave Thursday.
No comments:
Post a Comment