Monday, 27 December 2010

box full of crap at xmas????


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.

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

Sunday, 26 December 2010

an authentic experience????

The following is a piece of creative writing, with a theme of Hep C and also of the intensity at times of living a great deal of one’s reality via internet, forums, facebook and “D or virtual cyber-space interactions. Which is really a genuine and complex dilemma for many who have chronic long-term illness, especially those relatively isolated as I consider myself to be in many ways. Although not a great lover of people’s detailed relating of dreams etc, I have decided to share it as a sort of window for anyone who relates to some of the more nebulous, often disturbing and darker side of the psychological aspects of Hep C and of adjusting to a life turned inside out completely.
For that reason, it is changed from a simple dream and adapted to include some aspects of daydreams and serious waking thought trains and strange things that I (and others) often contemplate either through long hours of weary and confusing illness (treatment or not) or as a result of disrupted brain and thinking due to heavy duty meds

Have just woken from a nightmare in the early hours of day after Boxing Day. A nightmare about the Hep C Forum I belong to and also about the disease itself. Want to write this now, as it feels important to me to capture some of the themes and feelings – and what seems to be part of a process. When I first awoke, it was when of those slow returns to normal reality where a part of your brain knows that it was a bad dream, but another part is insisting how real it seems and how horrifying. I felt very sad when I woke and my chest was hurting, I think it was a message from my heart.

I dreamed about the stories and entertainment I regularly write or create for the Cafe (social section) of the forum. (a reality, I actually do weave various flights of fantasy or odd and curious distractions, as a contribution of some kind, a way of helping sick people get through maybe a bloody difficult day. And an outlet for covert tensions, within a generally very positive community.
The stories had of their own accord somehow evolved or mutated, and created and bred characters of the type I really do invent. Already I can’t remember all the details... dreams slide away so elusively as everyday interpretations of world kicks back into operation. Good job or we should go mad....
But I do know that these stories and fictional characters had mysteriously travelled around the forum and even visited other forums (non- Hep C and even not related to illness at all, anything and everything from a professional dancers forum, to one for ex-Catholics who had abandoned or changed their faith (very irrelevant to own life and very random???) But through various events, I ended up aware of a lot of information and intense experiences and insights, from these various weird explorations.... and somehow got into series of distressing and unfortunate arguments with various Hep C Forum members, over trying to see our disease and experience as part of the bigger scheme of things in the world.
Sadly, first of all it seemed like I was debriefing these invented characters, and gathering very little from them that was positive or hopeful about the world and human life. (Very much at odds with a basic philosophy I have of wanting to see world clearly in it’s light and shadow aspects, but to choose to focus on optimism, joy and laughter, hope..... and the best in others rather than the worst)
But this dream seemed to insist on cold, spine stiffening look at ugly and shabby harsh side of everything. One alternative reality being had visited dancers forum and watched a video of a piece of dance theatre about Austwitzch. Another had tried to set up a scheme whereby Homeless people could call in at special internet cafe facilities and connect with mentors via a Forum project, these mentors would be from ordinary everyday life and all walks of life, and their role not to advise, help or intervene but just communicate and allow homeless people ro feel that they belong to some wider community or society outside of Street World. But one had gone on line and posted “so what so what so what?” over and over again and then never heard of again....
Yes, I have already lost big chunks of all this. Anyway, secondly, when I had fallen out with these different forum members, over all sorts of misunderstandings, I remember in the dream feeling very sad about that and not wanting to be contentious but feeling almost compelled to discuss certain experiences which were uncomfortable for self and many. (That last bit is not difficult for me to understand, or probably some who know me, in terms of a metaphor for real patterns that seem to be part of my path.)
The dream was also about Hep C itself. Two post treatment members were very involved, one I don’t have a lot of direct contact with – who suddenly wrote an article saying that however strong we are, or wish to be.... there are some people who are broken by the disease and so how do we support them? For some strange reason, although I understood where this person was coming from, and sympathised with their intent, I got side-tracked and fixated by the fact that I recognised large sections of their post as direct or slightly adapted passages from other material published elsewhere, both academic and from internet blogs. And also some sections as being entirely made up speculation about different people, although claiming to be actual reported fact. And I became very angry about this and could not get past it. The member then tried to explain that they had “altered or disguised certain stories or identities in order to protect certain people and to illustrate a valid point.” But I was so angry about the plagiarism and said that this member was a psychological vampire, sucking other people dry. Which was pretty nasty of me and that’s how I felt, angry and nasty. Then the dream became about Hep C as well. I realised I was also a vampire, of a different kind. I was SVR and the virus itself was no longer present in my system, but it had left a weird type of imprint or shadow effect which had changed my basic personality and made me driven to ...... and this bit is missing, it was something I had to do for a Great Course in the long term, but which was harming and upsetting people in the short –term. And for some reason, this made me in effect a type of vampire also, and I realised I must have been infected not only by HCV but by a vampire attack which I had forgotten due to trauma. I actually looked up Species and Classifications of Vampires in a Plant Biology book???
Well, after that I decided I would try to drive a silver stake through my own heart, so I would not be a vampire any more. I messed it up, and there was blood everywhere, and weirdly even though I was not HCV active in more, this blood infected several other people with Hep C which was horrible. So then a post –tx friend of mine on the forum stabbed me and tried to explain she didn’t want to but just had to, in order to end this crisis and in compassion for others as well as me. But it didn’t work either and I was more angry with her for what I considered damned clumsiness, rather than the actual act..... so another argument started. Which upser me, her and others greatly.... But I knew for me and several of us, that if we did not express our thoughts and experience (however discordant) we would physically get sicker and sicker. Then I woke up ....

I offer this as it seems to me to touch on many of the more tricky underlying struggles for Hep C patients and sick people generally. How do you cope with huge adjustments in lifestyle (and often enormous loss of quality of life, due to severe and chronic illness? And what is the real impact of isolation on people, over time – even self –sufficient and resilient people – since part of us is very much programmed to be social and tribal creatures? Why does so much of Hep C emotional and mental reactions seem to be tied in to quite Plutonian and dark or painful perceptions? Reminds me a bit of Jungs Theories about the Shadow Self, or social models in which some groups or cultures are seen as overly fixated on all that is “nice, comfortable and pleasant, polite” - so that some individuals will inevitably become channels for all the suppressed angers, fear, anxieties and discord of the bigger group.
What happens when a strong person (or one who wishes to be) is simply beyond tolerance and resourcefulness or no longer has further reserves to draw on? And what assumptions do we make anyway, about what it means to be “strong or weak” or “negative or optimistic” or how we experience sense of identity through illness? How do people navigate through periods of despair (even suicidal feelings) or loss of trust in self, life and other people and feeling disconnected and alienated? And also how, where and when to we experiment with and push against boundaries and unspoken agreements for how much reflection we share, how much of our experience gets really shared and discussed, and when / where / how we push against boundaries of what is safe to discuss and what is not?
And I don’t have conclusions about any of this, but do know they are real themes. And would like to dedicate this written offering to: both those who keep communication and contact between other patients to clear, safe formulas, with well defined boundaries and a structure – which may limit or result in denial in some ways, but does serve vital purpose of keeping us grounded, positive, contained and able to keep some level direction and social agreement and coherence. (Anyone who has ever felt totally mad and lost with this disease and the medications will know what I am talking about....) And also dedicate it to those who choose to push at boundaries, take the risk to be vulnerable / foolish / disaffected from others in order to make the shared journey more real and expand possibilities. Of course, also to all those who move through and around those two apparent polarities, finding our way as we do, often blindly and often getting hurt, raw and bruised along the way and sometimes causing same to others. Yet also finding the gift of real connections, relief, discovery and shared experience along the way
This is long, and possibly clouded or obscure and may not mean much to may people. But hopefully will mean something to someone, now or whenever, along the way
Hep C can really hurt a lot. And have profound impact on a person’s whole world view... at best, hopefully, there can be a way (even if it takes bloody tears) to learn to accept, adapt or even discover liberating transformative experiences (paid for dearly with a lot of struggle and pain.) But there are other times when a person very ill with it all is going to feel damaged, wounded, fear, anger and so many other heightened responses that are more difficult than a model of a cheerful and well adjusted patient. Whatever the harsher realities, it seems to me so very important to try to keep creating and allowing real opportunities for connecting with other patients and the world at large, beyond a person’s own micro-universe of Hep C total possession and warp of self and life...............
wishing you: good sleep. Resilience. courage. The relief of allowing oneself to give up, give in, let go, break down, relinquish courage – of that is what is needed. Belonging. The right to withdraw and disconnect. The compassion of others and self... simple oblivion and numbness, at times, even if just a temporary relief. Whatever it takes at any given time. Good health and hope, and if restored health is not a reality – then as many moments of flow and grounded and authentic being and ease as are possible.

Much love, eva.