There's one vital thing I need to add to my tale from yesterday
that's been bugging me since I wrote it, but the story was getting too long. That is, the answer to a question I don't want hanging in the air.
"If something like tying a knot in the drawstring of a tracksuit causes so much angst when it goes wrong, why not just get Tracey or Christian to help you? Why put yourself through that frustration?"
That's just it, you see. Sometimes, both of them have been too accustomed to helping.
It's not just compassion, though it's mostly that. There are other reasons. Tracey has changed the whole house around bit by bit to make it easier for me. In a thousand different ways, every change has helped to create equanimity and simplicity for me to get about and do things.
To exemplify: things like a mat in a place I walk over that could easily trip me, especially when my mind is far away, which is pretty often. That's gone. Items arranged carefully on the table by my lounge chair. The lamp on my side of the bed with the switch angled just so that when I reach over with the arm that obeys, it will hit the switch. Clothes in the cupboard in easy-to-get-at stacks. Food items at a perfect height in the fridge or cupboard. Utensils in easy reach.
In other words, a million things that help to create peace of mind for us both. When I needed help in the shower at a time my right arm was so weak I couldn't wash properly or dry myself, she would be there to help.
But therein lay the trap. We were both aware of it, but when it seemed I was likely to die towards the end of 2010, what was the point of creating frustration, which only added to the chance of further debilitating seizures?
With Avastin therapy so successful in postponing what seemed likely to be the day (days, weeks...) of reckoning at that time, the goalposts shifted. Suddenly, I needed the strength I'd allowed to slip away, if some hint of normalcy was to be clawed back with the limited recovery Avastin offered.
She and Christian would have to stop being so kind.
This was reinforced by something my brother-in-law John said. He and my sister, his wife, had engaged in a truly heroic struggle to try to save her life, so he had all-too-first-hand experience of many things that Tracey and I were going through.
He was telling me of a chap who was nursing his father through an illness that produced similar physical problems to mine. People thought the son was being heartless by refusing to help his father do all sorts of things the son could have done in an instant. He made his father struggle through these tasks. Well, he refused to offer help he could easily have given, that is.
It doesn't take Einstein to work out what was happening there. His father struggled with dressing himself and all those simple tasks, but in doing so, he learned to achieve the things that seemed always to be just beyond his fingertips.
Tough love, I guess. But, any degree of independence can be a win.
So I began rejecting help I'd accepted gladly before, but Tracey is so soft-hearted that my struggle is her pain. Even though we talked about it, it was hard for her. Very hard. It still is.
Just about the only time I accept help or not try to do something was when the risk outweighs the benefit. I'd love to get back to cooking again, but I'm way too clumsy and her heart would be in her mouth watching me try to cut up vegetables or use a wok. A stray finger in the stir-fry, while adding protein, isn't a good look. So I had to let that go permanently.
I need her to be able to go out somewhere and not be scared I'll engage in some risky adventure while she's gone. As it is she frets and can never quite enjoy an outing, as there's always ... that. One of those possible events. You know what I mean. I'm not spelling them out. Best not to commit them to squiggles on a computer screen, though it's not as if we haven't talked them through quite clinically.
Tracey's good at most things, but one thing she doesn't [yet] get a tick for. Maybe she never will. I'm speaking of the 'tough love' department. She never was good at the 'tough' bit. So I have to be the tougher one here when I need to be, and allow her her suffer, listening surreptitiously at the door of the bathroom when I'm showering in case I slip over or something.
I've got to be cruel to be kind and all that, for both our sakes. I'm a hard man, you see.
Oh, you noticed, huh? I should think so. It's pretty damned obvious, right?
I had something completely different I had planned to write about today, but I'll put it off till its time comes. It's about roots – not the sort you might be thinking about, or think I might be thinking about. Not any that you might guess. I bet a million quid.
Hmm. This cracker I put a little cheese on for morning tea tastes like paint. Ah - I see why now. It's covered in linseed.
I know .. John did this for me for 17 years, allowing me to live life to the fullest I could - committees (I love being Chairperson!), standing for Council (I didn't win - the Liberal bloke did even though we're not supposed to have politics in our Local Government. Liberal Party uses it as Kindy for Politicians!), cricket tours and scoring for cricket at lots of levels .. love can do this for you. Then he had a breakdown and things went pear-shaped for a while. But love took over and it's all good again now. Survival is the main thing .. for as long as we have - wake up in the morning and it's another good day!ReplyDelete
I do apologise for not acknowledging this when you wrote it. For the record, I read every response, and of course some don't need a reply, but this one I'm sorry to have missed.Delete
The caring takes a terrible toll on the carer that is often not recognised, especially when they are doing their best to keep the person they are looking after cheerful and as stress-free as possible. They hide their own grief and frustrations for the sake of the other person. Even when the person being cared for does understand, then they have their own silences to keep, for good reasons.
There's a strong element of Catch 22 about this. Maybe I'll try to write about it one day. Tracey could of course, but then she may have to commit to print the very things no-one wants to see.