Three NET frustrations
My NET work makes me crazy sometimes. Sometimes it makes me crazy because it means I am continually reminded that I am a widower and that my wife’s body is not just down the hall or waiting in the bedroom for me or down the road playing tennis with
her sister. Instead it lies in a coffin in the cemetery three miles to the north of where I sit writing these words–that, indeed, I would not be writing these words but for that.
Other times it is the faceless bureaucracy of the cancer establishment. Anyone who knows me knows I dislike it when the rules that govern a situation get in the way of what I am trying to do. I know the rules exist largely for good reasons–that they have evolved out of problems and headaches people would prefer not to see repeated. But sometimes I have an idea that exists outside those rules–and that creates issues all the way around.
Then there are the inanimate issues created by our love of computers and social networks. People design websites and those websites have to answer a multitude of purposes for a wide range of people. I don’t care how long a website has existed nor whom it was designed by, they all have glitches that leap up to bite one in the neck at the worst emotional moment.
Today I feel caught in the maw of all three. Days like this make me want to throw up my hands in despair and do what someone inferred I should do earlier this week.
The NET moment
People mean well. I really believe that. But until you have lost someone close to you, you do not know what that is like. And once you have you cannot, no matter how hard you try, explain it to someone else in a way that will show them the empty horror of it.
“Why are you doing all this?” someone asked. “It’s been two years. You should get over it and move on. Why do you care what happens to these other people with this cancer? It isn’t going to bring Jane back, you know.”
That last bit is true. I know she is never coming back through that door into my arms no matter what I do. I know she won’t come into my study and remind me I haven’t eaten or offer me something to drink. I won’t find her in the living room or under the deck reading or doing cross-stitch. I knew it the instant they told me there was nothing more they could do.
I don’t know what it is like to die. I only know what it is to be the one left behind. And try my hardest I have not yet figured out how to convey what that is to someone else. Part of me died in that hospital room when she stopped breathing. Another part died when I walked into the house for the first time later that night, knowing she was not there and would never be there again. The silence of it is indescribable. The emptiness of it is indescribable. The meanness of it is indescribable.
Fighting NET
I do all this because I’d really prefer others not go through my daily experience. I do it because I prefer others not watch their spouse slowly descend into the hell that is end-stage NET–especially not at 56 with retirement beckoning after a lifetime of making sacrifices for other people and other people’s children.
So I endure the memories and the bureaucracies and the balky computer programs. When I see a group of people getting together to canvas for a political candidate I ask them for a minute to tell them about NET. I write letters to businesses and people I hardly know to tell them about Jane and her death and to ask them for their help–even though it is the thing I like least in all the world to do.
I walk in the heat and the humidity. I blister my feet and build callouses and strength so I can walk in circles through the night or the length of the Marathon or whatever else needs to be done.
I know I can’t stop death. I just want to slow it down–to take one arrow from its quiver–the arrow called NET.
