Just today I was thinking about how I can't think about things the way I used to. I can't handle idle conversations much any more. With the abrupt switch that happened, everything changed in a moment.
My attention is much more closely guarded now, and I don't think much about things that are just random thoughts any more, and life isn't about getting to Points B and C and D on my way to E. There is an immediacy to life that takes away my ability to live life the way those unaffected by illness are living their lives.
It is like I awoke from a dream, and I can't go back to sleep. It is not like I want to, though. Quite frankly, there are times I wish I could just shake people and tell them to wake up while they are so caught up in such idle, unnecessary crap.
In some ways I am appreciative of being awake, but there is definitely a part of me that misses the ignorance of the sleep. It also takes me that much more outside of the realm of most people's day-to-day experience of life.
It sometimes is very difficult to communicate and relate to others who just have no clue about my experience - and don't want one. And not only that, want to negate my experience in the interest of "helping" me.
In some odd way, it is like they want me to go back to sleep. It would just be so much more comfortable for is all. While I am awake, I threaten the sleep of others, among other things - and there is little doubt that must be uncomfortable.
Many who deal with cancer will do their best to avoid the subject all together. In some ways, for some, it would seem like play sleepwalking. I may not feel as I used to, but I will pretend I do. Then there will be no awkward silences. No stares. No discomfort. No weird treatment. No avoidance.
It might seem to be healthier and more positive than someone like me whose essence has become interlocked with a word and experience that shakes up and terrifies so many people.
It might seem that way.
But I would disagree. At least in my case, as it seems integral to my life experience to share what goes on, to talk about the things people don't talk about.
From the beginning my sharing has seemed to be much more than just about me. Occasionally this idea gets validated by what others say. At times I really appreciate it because I can't seem to stop, and there are times my openness creates problems for me.
There are times I also wish I could better express the challenges I face. There are sometimes no words that can express how I feel, but I still try. I try because I am desperate for people to understand not only what I am going through, but likely what millions of others experience in some form or fashion.
It is a silent crisis made so much more worse by those who choose the discomfort of silence over the discomfort that comes from the reactions of others. I am in no way judging those who remain silent. I do not blame them one bit. But when very few talk about the types of things I do, or they are only spoken of in closed quarters with those already initiated into the cancer society, there is little chance that a bridge of relatedness, understanding, compassion, tolerance - helpful action will be crossed.
There are so many taboos that we have, many of which show up in regard to cancer. It is like a big, ticking bomb that no one wants to get around. And yet, bombs can be disabled, as long as someone is willing to take them apart, making the individual pieces a lot less scary than the whole.
I really do believe - and hope - that if people could find more comfort around their discomfort it would have an incredible impact on our society as a whole.
Of course I could be wrong, but I am staking what is left of my life on whatever it takes to help forward things in a direction that could prove me right. I don't care how long it takes, either. It could happen long after I have left, but boy it would be amazing to see a glimmer while I am still here.
And if you have no clue as to why I say this, I hope that you discover my reasoning without ever having to stand where I stand, or have to be a witness to the pain, anguish and frustration of someone you love in having to deal with not only a life-threatening illness, but also societal biases, which in some ways, can at times be more painful than the illness itself.