box full of crap at xmas????

A BOX FULL OF CRAP.

Hey, look, if you you feeling really festive, and enjoying that, and it’s genuinely a relief and respite from sickness/ treatment/ Hep C /// good on ya, and please wander off somewhere else and maybe not even read this. Unless you want to get sense of how others might be feeling bloody bleak with it all. Or you are one of those who is feeling that way in which case, hopefully this is at least some kind of space for acknowledging and allowing that.

So; first part of this was written on Boxing Day and I was thinking about .. boxes. Yeah, I think about some really weird stuff, quite often, more and more the further along the surreal HCV road I go. Should I worry about this??? And certainly sometimes I do – fear that the whole package has fundamentally mangled up both my brain and personality and the other eva is.. gone. Or should I regard to it as maybe a positive thing...... a sort of interesting (if sometimes awful and demented and tiring) adventure into broader and more varied perspectives of life and an expanding of possibilities and awareness of life, self and others realities?

Which leads me neatly back into the thing about boxes. I hate, instinctively, so many of the kind of social attitudes and conventions which close us in or narrow our experience, attempt to categorise us and create divisions from others or from aspects of own self and of life. Always have done and Hep C anyway tends to build it;s own box around you....... especially if you go through periods of being housebound (what a prison type box that can be) or struggle to communicate (boxed in to own silent but lonely world... pretty damned painful.)

And no, I am not going to draw on much over-worked popular cliché of “thinking outside the box” – it’s probably become pretty meaningless and often these days just means.... having a good idea. Or suggestion no one else had yet meant. But as a symbol a box is still a good one for the kind of limitations and trapped feeling I am describing. And the obligation (real of imagined / conditioned) to Have A Good Time at Christmas and do the whole thing. Magic, if that’s really where you are, but how may sick people have felt like they acted it all through like a Charade – when actually they were bloody tired and just wanted Christmas (and everyone) to Go Away???

Most years, I really enjoy Christmas and all the fun and magic (different to hating all the commercial or forced aspects of it.) This year, I just felt totally disengaged, ill, tired and past it. Like So What? Aware of feelings of good will and caring sentiments to others, but thinking – well I think that would be so regardless of the calendar date.
Felt lonely, miserable, isolated and fed up for much of Christmas Day and Boxing Day. Not anyone’s fault. Husband and daughter were with me, and both being delightful, and mellow and easy. And not putting expectations on me. Big ups to them. And we are all pretty straight with each other, so I did tell them (without too much angst) how damned lousy I was feeling. But of course, selfish moments we may have when ill but we do want to be fair on others. So yeah, there were a few moments when I quietly tucked self in bedroom and had tears and releasing hurt of such relentless struggle over the last few years. And total trashing of normal life. And damned disappointment (plus some guilt and inadequacy of course) at hardly being able to play half a simple board game, watch a tv programme and understand it or do nice things with loved ones. Didn’t cook, clear up or really contribute anything to them. Except hope and appreciation.
So I didn’t so much have Fairy Tale expectations of what I thought Christmas should be ... I think it was more that it highlighted a sort of over-view of the whole journey over years of illness. And intense post-tx frustration and not... being better than I am yet. Which i had certainly anticipated.
There must be so so many people who are ill with this diease who are in really difficult circumstances. Perhaps alone a lot, or don’t have family/friends/carers to help them keep going one day at a time. And certainly i know a number of people with broken relationships, real financial problems, impossible work situations, secondary or co-morbid health conditions and all sorts of challenges.

Not Scroogey or dour or anything except pretty understandable if some just feel like gritting their teeth and wanting Xmas and New Year to be done and gone. Maybe those who feel that way need some kind of network or club where they can at least have the chance to see..... oh god, it is sad and hard.
But its aint just Christmas. It is finding ways to relate or make sense of all the apparently normal conventions and routines of everyday life and lifestyle of people out there in the big wide world, everyday world of normality.

Sometimes – simple things that others take for granted become more and more remote and unreal.. Distant memories or just material of “yup, I am on another planet, feel like an alien.” I am talking about matter of fact stuff (for functioning people) like driving, going to a shop, pottering around the house, following current affairs – which to me these days seem like science fiction and very strange and far away. Or caring about things that used to be important fundamentals.... like even how clean and tidy is your house? Well , I do care, but I like many have quite simply HAD to let a lot of things go.

Can’t remember what it feels like to actually go out and visit someone else’s home. But was remembering that standard phrase people use when they welcome you on arrival..... “So sorry about the mess!” Ha!! I would laugh. Live with Hep C for a few years and you will get past apologising for:
The “mess” the horrible bad hair days the fact that you cannot hold a coherent conversation and not having replied to phone calls messages or answered front door for one million years. Also having lost all sense of style and fashion consciousness, not bothering to pretend you like your neighbours anymore or even can be bothered to speak to them and not remembering anyone’s birthday or having the patience to not scream at people standing in shop doorways if ever you do venture out.

Also
Recently, in the news, in bad, snowy weather..... and old man feel in the snow. He lay in the street for six hours...... half unconscious and helpless, while people walked past him. SIX HOURS. What kind of a world is that to live in??? When somebody finally intervened, and helped and got him an ambulance – turned out no he wasn’t some useless old drunk not worthy of care (not my attitude, just one that seems to be out there) but a guy who had collapsed with minor stroke and undiagnosed infection..... who could have bloody well died of hypothermia.
So I just think that Christmas or not... a kind world as much as possible, and some community, awareness and belonging, is more important than any fancy baubles on a tree, the best stuffing for your organic Celebrity Chef Turkey Recipe or whether to invite a colleague you never even talk to the rest of the year to drop in for a sherry. Cynical – no I don’t think so. Was thinking about those years when things are tough (though maybe you look back now and realise they weren’t that grim compared to Hep C) and you got out the Xmas decs and they looked like a box of sad old crap.... I was imagining, earlier, what my box of trimmings and decorations would have looked like this year, had I bothered to decorate. Which I did not, was to uninterested and damned tired and priority becomes about just where and how you channel any energy you do manage to summon.
Well, I pictured a few strands of bedraggled grey tinsel and some shabby khaki (or kacky?) coloured baubles. Yeah, well at least that made me laugh..... sometimes I think Hep C is like a box of crap .

Oh well, New Year soon, have a happy and upbeat one and I DO wish you new beginnings (postivie) and better road ahead. Xxx love eva