this is what I remember most about dying

From "Controlling Death - Compromising Life":

"Choosing not to transplant means learning how to live with limitations and uncertainties that doctors cannot make go away. These limitations and uncertainties are embodied in the chronicaly ill, the disabled and the dying - they symbolize the failure of scientific medicine to control nature. In an ableist society, physical limitation, pain, and the loss of abilities stray too far from the cultural ideal of the body. For the able bodied, the disabled are the Other, a threat to life's narrative representing uncertainty, doubt and incompleteness...Technologies of normalization are instrumental to the systematic creation and control of "anomalies" in the social body (Foucault 1973, 1980)...within these technologies, the body becomes a matter of norms, averages, and deviations, transformed into something calculable and determinate rather than something shrouded in mystery and determined by fate or chance." (Maynard 214)


Yeah. so.

So it is somehow not OK to talk about death. To say, I choose not to live. I don't mean suicide, though I think it fits in. I mean simply the idea with Cf that we would want transplant. It isn't that I don't understand why we choose TX. My uncle is nearly 14 years out. I get it. Fourteen years is a huge chunk of life and what he has accomplished in that fourteen years compared to the 44 before it is great. He feels great. There is hope in that story and the stories of so many others. But hell, what about all the stories that don't end that way. Those are the ones I'm interested in because those - far more the norm that the others - are NOT the ones were suppossed to look to.

Positive thinking has never been my forte. I don't mean to say I have no hope. It is not a nihilitic approach that I take to this life, it's only that idealism makes me nauseated sometimes. I like things that make sense, that can be proven. It doesn't mean I eschew all things spiritual for an entirely materialistc outlook (as my own father might have you believe), it's just that...I don't like having my heart broken and my heart can't break if I don't let it believe in that which might not be true.

Never fear, despite how I try, this heart breaks daily. It breaks today. It's been broken for months. years maybe. and that's OK. It isn't sad to live with a broken heart, it isn't a bad point of view. It's just one that you have to get. If you don't "get it" then you just can't understand and I don't know that I have the words to show you. But Paul Simon does, "losing love is like a window in your heart, everyone sees your blown apart, everyone sees the wind blow."

I think we live more fully by allowing ourselves to feel the pain of the world rather than pretending "everything will be OK." No, it won't. and it's OK that it isn't OK. Except we're not suppossed to talk about it. I'm not supposed to tell my family - my family with the history of a CF uncle 14 years out of transplant - that I might be OK with dying without TX. and yeah, I know, I have kids. I owe it to them to try, right? But do I? Would it be so bad for them to witness the death I was meant to have, the CF death? Versus the death that science could give me, the TX death? And is this all easy for me to say, simply because I don't feel the presence of my own death right now?

Because I am pissed off that I keep losing people I love to death. Because in my own way, the ultimate FUCK YOU to CF might not be fighting the death but giving into it with grace. Turning the other cheek and saying to this body, "I forgive you, let's go now."