Tuesday, 27 July 2010

black holes and all that

“I feel like I am loosing myself ... or have already lost myself. As if I don’t exist and am falling into oblivion..... and all my anchors to the normal world have been unhooked; I am floating emptily in nothingness.”

He nods wisely. “Nihilism” he says. “Very common experience with chronic illness and isolation.”
Various snippets of black humour and darkly comedic images run through my mind, and we share a laugh about them. Aliens and black holes and “mind the gap” on the London Underground..... I am glad my psychiatrist can be flexible and humorous, and that i still have some ability to imagine and to communicate. But my chest, my stomach, my brain hurt with the fear that beyond illness I shall never rebuild a real sense of connection with life, self, people and the world again .....
That I will always feel like a shadow, or a phantom. I shall have to haunt the edges of my own former vibrant life....
I know this is not the absolute truth, but I don’t know (at this time) that it’s not real.....
"Nihilism is not only despair and negation, but above all the desire to despair and to negate." (wrote Albert Camus.)

I remember telling someone, once, that I had descended from depression to despair. A place where you would want to obliterate yourself and everything;......... if you could actually be bothered to get off the sofa. Of course, sensible mental health awareness demands that if we get to this level of weary, struggle: we take action, get some help.
Which, I did. And do. So I hold on and I keep finding ways to make each day meaningful, and to create a sense of purpose. Commmunicate with others. Perform small tasks, achievements. All good anchors. And there’s the anti-depressants, of course. Not that I am saying that all moments of existential angst (and tx struggles) require medication: but mine is prolonged and profound enough to necessitate that.

Anyway, what makes us feel at home with ourselves? Maintain identity? Just that simple feeling of being and of some flow in life (so easy to take for granted when it’s present, so painfully raw and harsh when it is absent for long periods of time.)
I suppose it’s different for everyone but much of it will be down to what we are familiar with – our way of doing things and habitual routines over time. Having been of a bit of a philosophical nature (and frequent over-thinker) since quite a young age – I long ago got past believing that my identity was formed by or dependent on social roles. (Mother, daughter, professional title, Helper, Best Friend and what you will .......)
What I have discovered though is how much of my identity was linked to doing ..... the activities and involvements of everyday life. That’s the habitual aspect of our particular individual MO’s. So when we are ill and totally flat on our backs and incapacitated for long (long) periods of time - what happens to one’s sense of functioning and being part of the world and of having creative choices ......?

You have to be increasingly and extraordinarily resourceful and inventive (over and over again) to maintain that through chronic illness.

I was a person who DID a lot; aside from work and the mechanics of life: gardening; hosting lovely, relaxed dinner parties; arts, crafts, , festivals; exploring the world.....
What happens to your mind – and your feeling of “this is me, and this is my life, which I shape” when you are lying on the couch for days on end and staring at nothing? When even the capacity to distract yourself with sedentary activities, such as reading or watching tv, is gone.....?

Sometimes I have discovered such profound and subtle levels of boredom that I was convinced if I took it to one more degree (one more hint shade of grey) that I might have some extraordinary mystical experience of being-and-not being.

I didn’t.

I just learned how to keep going, moment by moment, breath by breath, day by day. And to appreciate: relief gained when sleep (erratically) came along; the lifeline of being able to communicate with others via the written word and the moments when my mind did click into engaging with something for a while ....

How lucky I am to have been able to continue to write (sometimes) and to have people who have read and responded to what I have written.. Otherwise, like Alice I might be concerned that:

it might end, you know,' said Alice to herself, `in my
going out altogether, like a candle. I wonder what I should be
like then?' And she tried to fancy what the flame of a candle is
like after the candle is blown out, for she could not remember
ever having seen such a thing.

with love, eva day.

Monday, 26 July 2010


Tx Quiz (treatment assessment)
this quiz is deisgned to help you evaluate and manage your treatment:

1) What is your basic attitude to treatment?
a) “Die, fekkin virus, die!” (DFVD)
b) “Aaaaaaaaagh!”
c) Transcendent./ Deliberately Oblivious./ ohhhhhmmmm...
d) What? Huh? I thought I was on youtube?
e) I, eat research documents for breakfast and I am a Trekky as well

2) Which metaphor do you prefer?
a) Dragon slayers, of course. (DFVD, etc)
b) This is an effin roller –coaster. Why am I upside down and puking? Or have I been shipwrecked?
c) travellers in the wilderness on a powerful journey pass the duchy to the left hand side
d) Oh god, the dogs been sick all over my feet and i had cornflakes for brekkie and I just puked them up all over the dog
e) I don’t.

3) What triggers riba rage?
a) My boss, my next door neighbour, the next-door neighbour’s dog, my best friend, brushing my hair, my best friend;s dog, any sound whatsoever and this effin quiz
b) I can’t remember, I just ripped off my own head and ate it!
c) Well I would get wired up but I am just too knackered... am living on the sofa. No, the ceiling. Ok, I am actually bouncing between the two
d) I suppose so I think i read about that somewhere ....errm not sure if I have pressed the right button.....
e) Ribaviran causes riba rage. Although actually, it’s probably often down to the interferon....... so the term is something of a misnomer.....

4) My doctor is :
a) Probably hiding under the desk cos I’m on my way in to the surgery. Be afraid ....
b) Chained to my bedpost
c) Made of quartz crystal and transmitting alien messages
d) AWOL. And so am I ......
e) Doing his homework for an exam I have set for him........

MOSTLY Absent. none of this bears any relation to the answers given i have no idea what i am talking about and you no longer remember what is supposedly normal – but you will get through.
MOSTLY Bonkers. cos you reckon it’s the only way to be. you have an invisible friend who sometimes writes messages on your behalf......
MOSTLY Comatose. your blanket is now a sacred relic and the remote control is symbiotically experiencing all this along with you
MOSTLY Don’t Know. You should skip D and go straight to E: you are in the middle of a white noise zone. Hold on to your towel and everything will be ok....
MOSTLY Elvin. Your name is Elvin and you are the invisible friend of another hepper, earlier mentioned. Although this can be confusing; you do have a very balanced attitude in between the fits of hysteria ...

MOSTLY eefFFed. Yup!! That just says it all..........


love, eva.

difficult people, difficult me .....

HCV – both the disease and the treatment – has hugely affected the way that I relate to people and the world at large. And, on a very profound level, the way that I relate to myself.
I feel that I have stepped out of everyday life and into another zone – beyond the reach or understanding of many friends and family. People begin to quietly drift away. Others step forward briefly and offer advice, wisdom (maybe platitudes) which sound to me like full stop or an avoidance, rather than a real dialogue. Of course I have to accept that. If people outside of this experience cannot connect and need to distance themselves, then banging on their door or demanding greater awareness will only cause further fear and discomfort – for me perhaps even more than for the other person....
So it can get very lonely. Who am I now? That’s the lost voice chanting inside, for many of us. So much is stripped away – depending on how hard the symptoms hit you at different times. we may loose;

our working life and career; family support and interaction; friendship, companionship, community and social life; primary relationships, even a marriage; our appetite and our hair; our mobility and opportunity for simple leisure pursuits and past-times; our concentration, comprehension and even simple ability to distract ourselves (from pretty constant discomfort) and our sense of perspective, sanity and proportion.
Anchors, familiar routines and interactions, any basic sense of flow or rythm in life – all gone. We experience a feeling of disintegration, alienation, loss, loneliness. And still, within that empty space, we need to somehow find the courage and resourceful to remain positive, brave, optimistic. As the rest of the world will often tell us – on those days when we do take the risk to reach out and tell someone else how it is.

A dismissive and curt “you’ll come through ......” from a friend or family member who you thought was a special part of your life; followed by months of silence and their conspicuous absence. I guess we all know the hurt and loneliness of that one. If only that person could for a moment imagine the difference it might have made if they had simply been able to say:
“I am listening. “ I don’t know how to help but I do care.” Or “I am sorry I don’t always know how to respond ...... what do you need right now?”
And there are times – for those of us actively in touch with other Heppers – when even contact people within the Hep C Community may make us feel lonely, confused, discordant. Generally, with all the good and supportive intention between HCV patients, this is usually down to crossed wires rather than deliberate bloody-mindedness. And to the reality that we’re all sick and struggling and with scrambled circuits. (actually, given the stressors, perhaps it’s a testament to the strength of this community that we don’t fall out more often....?-)
Illness and treatment has been a very isolated experience for me and that isolation has affected me in so many ways. I am sure many others will understand this. For a general self-sufficient person – I certainly have discovered that there is another very fundamental instinct within us that needs people, community, company and belonging.

Unfortunately, through this tough haul battling the virus; it is the nature of the beast that we are also going to become confused, disrupted in our thinking and ability to interact, and just plain mixed-up. So this may result in times when we alienate others.
In my case, generally I have had pretty good social skills and am a sociable being my nature. Never in my life have I experienced such a time of discord and loss of harmony in my relations with others, individually, and with the world at large. A fair amount of it is down to the perversities and complexities of human nature; some of it is down to my own agitation and emotional disruption on treatment. Sometimes I have confused or pissed off other people (with no intention to do so.) Or at other times, I am intense and full of highly charged psychic energy and some people just can’t handle me. On one level I am totally accepting and detached about this and on another level it is sll very painful and I have no real insight or conclusions other than it demands huge levels of absolute faith on a daily basis that:

*You are not loosing your spirit and basic identity; this too will pass...
* you forgive yourself and accept your struggles as part of the experience and not a reality of who you basically are
* you may re-evaluate how you understand your place in the world, your relationships and friendships, and even your sense of trust in life, self and others and this process may feel like your heart is open and raw and wounded. But you will heal if you believe you can and ultimately you can forgive: other and – again – yourself.
* you choose to believe that you can have the grace to look honestly at the harshness of life at times, yet still hold on to the hope and the beauty and the kindness where it is given; and to hold on to each moment of that to nuture you.
* I am not my illness; I am not my symptoms; I am not my pain or anger or confusion. I am simply me, living through a huge challenge and doing my best each step of the way. Along this path, I may have been hurt, and perhaps hurt or confused others at times. We are all human with all our strengths and weaknesses. we can choose to approach each day as a potential new beginning and to believe in community and kindness.
With love, eva (eva day)