two weeks

I know a lot of words but often I still feel like I do not have words that are adequate to express what is in my head and heart. I think in some way that is because feeling happens at a level of .. I don’t know, consciousness? Awareness? Existence? A level that is more primal than language. Language is something we have invented but feeling is something that we are.

The last while has been broken up into sections of two weeks. It’s two weeks since the notfuneral. That was two weeks since he died. That was two weeks since he went to the hospice. Saying it like that makes it seem like not a very long amount of time but it hasn’t felt like it. Is it really only 6 weeks since that disaster where everything got set back to zero? Six weeks that we spend waiting for the next set of appointments with the next person we have been sent to see, trying not to worry that they too will tell us that whatever is wrong with Stephanie is not their problem. And in the meantime having the not dying and then the dying and then all that stuff.

The not dying was worse than the dying, to be honest. Stephanie and I went to visit one day and it was pretty terrible. I mean, I thought he looked like shit at Nanna’s birthday. It was so much more when he was laying in a bed, literally skin sagging on bone, hands laying awkwardly because there was no muscle or energy left to put them where they usually go. Mouth open. Eyes neither open or closed. And it seemed like he had some sort of awareness of us but it was hard to tell for sure.

We make the choice to end the lives of other creatures that we believe are experiencing more pain than joy in life. We decide, they cannot tell us. They cannot tell us that they want it to stop. Making this choice for them is considered the correct and compassionate thing to do. Yet people who are capable of expressing that they want to do that are not allowed. Why has human life become so held on a pedestal that the thought of ending it – whether before it happens or at the end of its normal course – has become so taboo and so abhorrent? Sometimes it is the best and most appropriate treatment. It is considered a human right to be able to make our own health and medical decisions. So why is that right removed when it is needed most?

It is strange now that it is finally over. I don’t feel unbearably bereft or something that seems like it will never get better. I think in part this comes from having been expecting and preparing for it for so long. And in part because I don’t believe that this is the end of the adventure. I find myself thinking about numbers. He was a month short of being 87 years old. When he was born, in England, in 1929, the life expectancy for a male baby was about 55 and a half years. So when he was born, it was expected that anything he lived past early 1985 was a bonus. A thirty-one year bonus is pretty good, I think. When they watched the video my mum made Abigail commented that she didn’t know he was a twin. It made me wonder if his mum knew, before they were born. Obviously, no ultrasounds to tell you that, but on the other hand, the midwives were probably a lot more experienced at diagnosing position and number of babies by palpating.

Another number: 80% of the people in our household have had a grandparent die this year. The 20% has one remaining living grandparent. (Luckily for her, I don’t think this statistic has great relevance to her likelihood of dying any time soon.) I am 35 years old and my first grandparent has died. For my children, that happened before they were even born. Daniel’s have been spread out.. I think one died before he was born, one when he was a kid, one a few years ago. I still have the most living grandparents in our house.

two weeks

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Man, I really don’t want to do this morning. Feels like there is so much to do and so many possibilities and so much chance of more frustration, disappointment and grief. I was kind of just managing with what I already had on my plate but yesterday my phone decided to shit itself and the screen does not respond to any touch input at all. I know that it is just a phone, a thing, and not important in the “grand scheme,” but it’s what it does that is the source of my frustration. It lets me play games and distract myself, it lets me take pictures and escape into looking at other people’s pictures, it lets me find out information right now that I would otherwise worry about until I get home and can use the computer.

It’s also the third time in less than a year since I got it that I have had to return it for fixing, and that is just fricking annoying. When I got it there were dead pixels in the camera, and that got fixed; then a few months later it had the same problem as I have now. We (well, Daniel, coz I made him ring up, since their stupid website 500ed in the last step of the ticket process) told them that enough is enough and they need to replace it rather than just keep giving the same, obviously faulty one back. Someone has to “assess” whether it is worth doing that and I have to take it to a place in Carindale. Coz I just love going to Carindale by myself.

By myself, because mum is not here. She is at the Sunshine Coast again, though probably for the last time for a while. She left straight from the hospital after last Wednesday’s disaster. Coz Grandad went into the hospice on Tuesday afternoon. I couldn’t remember what it was called when I was trying to tell Daniel, and I told him that he was going to the “dying house place.” Hospice is another one of those words, the ones that try to delicately skirt around topics that some people find hard. And it sounds like hospital and sort of gives the illusion of possible recovery. I think so, anyway. But we know that is not going to happen. The cancer in his stomach has taken over so much that there is barely any room for it it digest and absorb, and it is plainly obvious to look at him that his reduced appetite has resulted in his body burning away all possible reserves of fat and energy it had, just to keep going. But he did, and he made it to their anniversary, which he said he was going to do even when we all thought he would be gone last school holidays, before Abigail’s birthday. I think that he doesn’t want to go to the next great adventure without his sidekick (though actually I think maybe he’s the sidekick and she’s the ‘headline’ superhero.)  I get that. Of all the things I the world, I relate to that most of all. So I think that his determination has kept him going for this long and that is kind of amazing in itself, but I don’t think that the spirit can power the body indefinitely, a body is a finite resource. And as the saying goes, he is running on fumes. 

So one day very soon even those will be exhausted and that will be the end. This waiting for someone to die is very much like waiting for someone to be born, nature and the universe have a timetable that we are not privy to. But when you are waiting for a birth it is anticipation of joy, and when you are waiting for death it is.. not. We had this, to some degree, with Lisa, but we were removed physically and didn’t have that edge of a cliff, dread of imminent change that we have been expecting for, like.. months,  now. She was sick but not “die any day sick” until much closer to the end. Doctors have told us he would be gone a year ago, or two, even. Part of me wants to be mad at them. How can you make mistakes like that and make people live with this dread for so long? Yet I know the answer is that for all they know, the body is still in some regards, very much still a mystery. Especially where the power of one’s will comes into play.

But this also relates back to my other main problem right now. If doctors will tell you that when someone is dying and they underestimate or overestimate the time that is left because the body is not a well oiled machine that follows an instruction manual, then how can this man from last week look at us and so firmly and dispassionately tell us that he is absolutely right and we just need to deal? It can’t be both ways. How are we mere lay people meant to navigate and make sense of it all when even doctors can’t explain everything?

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