A follower of my blog suggested that I talk about how those around me regard my virus. It seems good to write of this rather than my talking myself into an ad finitum weeping and wailing loop repetively circling my potential recovery- as if I have some form of Stockholm syndrome with my dis-ease.
The thing with long term illness, is the people around you get used to it. My mother had COPD and when she died we were taken unawares, had no plans for a funeral, and didn’t even know whether she wanted any particular religious or spiritual observances, despite her being near death for many years.
As with those afflicted, friends and loved ones also go through times of denial, over dramatic reaction, and getting on with life to the point you near forget about the shadows.
When I was attending NA it was a great dumping ground as so many other members had HCV and we could all whinge to our hearts content as a means of necessary release.
In the ‘real world’ especially the English one, such expressions are considered self indulgent and perhaps even a means to blackmail reactions from people.
I have incredibly solid and supportive people around me, but I realise if I say too much it can create feelings of anxiety and worry.
Other people don’t want to know, perceive me as a drama queen or at the other end of the scale ‘brave’, and I won’t deny I fluctuate between those extremes with long periods of just living life sandwiched in between.
Over the years various partners have accepted my viral status, but when the relationship has finished and a new partner insists on them being tested for HCV before they have sex, however sensible this is, it still makes me shrivel a little inside.
A few days ago my practice nurse called me to say that the virus is now not detectable, for the first time in 27 years! I was going to dinner and a film with a very old friend so of course I announced the news and at the end of the evening he made a pass at me.I don’t want to analyse this and prefer to think his actions were just clumsy and ill timed.
Then of course there are the opinions and the advice giving, often adamant and sometimes slightly aggressive.
There are those who are anti conventional treatment and those that think I should rest. Some believe that my lifestyle means my illness and its manifestations are ‘my fault’.
Anyway. Whether I’ve written enough or not enough, I’m done on this subject (hopefully). Nine days and counting…
I’m sitting in a coffee bar, knocking back strong caffeine and trying not to scratch my swollen and slightly blistered eyelids. I’d mulled over writing this blog about my time journeying in China but I thought fuck it…hopefully I’ll never be talking about hepatitis once this course is done so I may as well spill out my end of treatment angst (and itching) one more time.
I mean hey, life without using #hepc, I’ll need to find something to fill the gap.
Amazing how easy it is to attach yourself to an appellation and live around that for years without realising it.Now I have had my revelation and my time flogging this diseased horse is near an end I need to either choose to settle into soft stomached middle age, or rapidly find some new windmills to tilt my lance towards.
So I’m drinking coffee in a technicolour Lebanese Restarant and writing in time to frenetic music whilst trying to evade guilt that I’ve spent a portion of next January’s travelling money on a minor (for some) or major (for me)spending binge.
I will not hopefully, be a disease carrier in two weeks so I deserve new winter clothes (well TK MAxx) rather than my usual charity/eBay finds.
I have this niggling suspicion that I have lived my life as if I may drop dead any minute, which hasn’t been a bad attitude in many ways, albeit a slightly short sighted one. Whilst I was living in a drug fuelled tunnel, it was a sensible approach, but post drug use this bloody (no pun intended) virus created an excuse to validate the long term adaptation of the ‘live today…’ philosophy.
I suppose I could construct a plan regarding my new life approach (scratching my increasingly reddening weeping eyes under my nighttime sunglasses) but for now I’ll settle for knowing I need a new plan and trying to sort out this bloody itching.
Above Image of Charlotte Rodgers at the opening of ‘Rust, Blood and Bone’ photographed by Gerard Hutton
Two months into treatment and a month to go. My viral load has dropped from over a million to 27 and whilst I’m elated, I’m more than a little stir crazy at this whole self care business.
It’s a year of being ‘at home’ something that my 20 years in Bath has never exposed me to before.
I’m re-landscaping my gardening, putting more focus into my day job, reading more than ever and actually getting to know the city I live in.
Being incredibly tired helps, something that I’m not used to hampering my style. I’m high energy and though perhaps I run more on pure bloody mindedness rather than real term energy, I run fast and hard…well I used to.
Now I’m sleeping a lot, eating well and gazing at the abyss of the middle aged and the middle of the road and however temporary it may be, it’s grim.
Recently I went to a movie with a friend who doesn’t work, and the afternoon showing was filled with people not that much older than myself, who were retired. I met another retired friend for coffee, and a woman that I’d occasionally seen in passing came over to chat. She’d been reading in another corner of said coffee shop and was bored. We talked for a bit and after she left I became very aware of this huge amount of intelligent people drifting restlessly through retirement, enjoying the time to read books, travel and see films but basically single, lonely and unhappy.
Truth to tell, this freaked me out.
I suppose my obsessive, focused projects save me from this drift, although every now and then something interrupts my passionate immersion and I come to and look around.
I hate the idea of being part of a group purely by benefit of age, necessity or circumstance, when I don’t really fit in. It happened when I was actively involved in NA and AA, when I lived in Hong Kong and mixed with ex pats and when I moved within the drug world.
Perhaps it is just ego denying that I am more mundane than I like to believe, and over the years I have learned all people have surprise selves tucked away under purportedly ordinary exteriors. However I’ve always found nothing to be more lonely than being part of a group that you don’t fit into, and more empty than mixing with people that you cannot be yourself around.
Enough of the introspection. The sun is shining and I have art to create!
My father was very body conscious with an active involvement in the sports that men of his era participated in such as boxing and gymnastics. However as he wasn’t part of our lives for very long, and as my stepfather was more of the persuasion my mother my sister and myself were, his predilections had little influence on our later, happily unified rut of intellectualism and culture rather team sports.
Although my sister was good at ballet and gymnastics the moment puberty began with the appearance of her interpretation of the impressive family ‘bosom’, her athletic interests waned.
We were all joined in our belief that we were not co ordinated, that physical education classes were a humiliating horror to be avoided at all costs and any sports we were forced to participate in and didn’t come last, were a huge success.
Our excuse being we were bohemian intellectuals and one didn’t and couldn’t cover all bases, as was shown with my sister’s said development of the family breasts and her turning her back on physical activities and becoming an avowed book reader like the rest of the family.
Not being able to differentiate between left and right or able to understand a reasoning for sports meant that I had various ‘incidents’ that saw me run into a gym horse (how are you supposed to elevate yourself above it?) badly wind myself on the parallel bars, and simply stop in disorientated confusion in front of hurdles.
I once went to a netball game that my sister played in (she was also in the bottom team) and saw her either duck or run away from the ball when it was thrown at her, so there seemed to be a family anti team sports gene in action.
As I grew older other members of my family defied these conditionings and took classes in dance, aerobics, yoga and such like but I kept fit by benefit of having no money for food and bus fare and pre my daily drug hit, got my veins pumping by lifting weights.
My first experience of yoga was in rehab (cue whale music ‘imagine you are a water lily on a still pond’ and me snoring within the first five minutes of the session along with the rest of the participants).
A few years later I started going to a yoga class that while challenging, created a previously unexperienced feeling of joy in my body and the realisation that I was actually good at some physical activities.
Of course being the obsessive that I am, I took this to the nth degree, and spent years doing a daily practice, went to Asia to gain teaching qualifications, and eventually taught my own class as well as a class at a day centre for those recovering from addictions and eating disorders.
I would see recovering addicts hyperventilating and having anxiety attacks when they inhaled deeply and anorexics who couldn’t let go of control enough to close their eyes for meditation, and I would see aspects of myself.
I’ve just started my practice again and am re remembering that incredible feeling of empowerment. The body that I’ve regarded over the years as an encumbrance, an unwieldy vehicle or a burden is transformed to become part of a whole, an empowering package that breaks through all the conditioning that I’m no good at physical activities, not co ordinated, clumsy etc etc etc ad nauseum.
It’s like a long term love affair (of the superior sort, unlike my more human variety love affairs which generally are not so life enhancing) which every time I return to it, I feel so strong, so good and so powerful.
Yeah I still smoke and maniacally consume coffee so I’m no paragon of radiant wellness, but when I stretch and do asana, I am grace, beauty and power and actually love, appreciate and value this battered old body of mine.
I’ve written many times about my creative process, but thoughts and insights about my work evolve so quickly that any words rapidly become dated and redundant.
I once compared my art to a language that I learn only by direct experience of each letter and word, or a jigsaw that I don’t realise what the the final picture is, until it is completed.
I work with road kill, debri, the naturally dead and the discarded. I always have, but then I’ve always had the same fascination and perhaps identification with things that are not seen as beautiful unless you look at them through a different lense.
I’ve been creating totemic art work with these items since my teens when in some respects it was part of a counter cultural tribal expression; an eighties thing, part of the anarchic taboo breaking at a time when the world was changing or perhaps even on the cusp of ending.
I stopped for a while when I disconnected from myself in a drug use then drug recovery free fall, and when I became me again, I found it necessary to resume the process.
The more recent trend in taxidermy art hasn’t made me a star or increased sales of my objects as my work don’t seem to slot into that genre. I suspect it is too primitive and perhaps that is a good thing as my ‘creatures’ as I call them, I tend to view as my sometimes recalcitrant children, and I would have difficulty sending them to homes which could be unsuitable.
I’ve gone through a minor crisis of late, which though unpleasant can actually be good to have as it shakes things up and creates new perspectives and directions.
I’ve been to the Chelsea district in New York and seen high end conveyor belt investment art, where I most definitely don’t fit, and as I said I stand outside the current cool taxidermy trend (too old? not dressed properly or presenting a cool enough persona?) and my pieces are not overtly occult so that’s another niche market lost. So my work slides between the gaps which is maybe how it’s meant to be. Not an action that makes me money, but something which I have to do, an act which creates insights and expressions.
If I exhibit I sell, but I’m just not ruthless, driven or financially canny enough to do this frequently or in the conventional manner, and I like to play too much.
If I have an exhibition I don’t want a static event. I want a fluid creative dynamic and that edge of chaos element is definitely not a good basis for money making.
The creation of my pieces are not planned in advance. I have ‘ingredients’ that nudge me to amalgamate them when the time is right and they flow into a shape until reaching the point where they become alive.
Years’ ago, when my mother died I had a nasty existential crisis, what is the meaning of life and such like, and I realised, simply enough, life is about creativity.
Creativity is the balance to destruction (both the necessary and unnecessary kind). Creativity is having children, gardening…and art.
So my life is built around the creative act. Illuminating or appreciating the dark corners, expresssing and celebrating the lost, the forgotten, the confusions and the debris.
Fluid in expression but a non negotiable and very necessary act.
I just couldn’t wake up today. I tried, but was trapped in a near paralysing foggy exhaustion that made it necessary to take the day off.
Usually I can fight through tiredness with a combination of bloody mindedness and caffeine but this time it wasn’t possible, so I went back to bed for many hours.
I planned as I drifted off to my second sleep to use the day to write a blog on my art, but now I’m actually (finally) operational I thought it would be more beneficial to write about how the Epclusa treatment for my hep c is going.
I’m in my third week of taking a drug that has seen me travel through anxiety, mania, nausea and irritation with a constant of heavy bodily exhaustion.
Some of the emotional swings I initially went through I realised were related to the past horrors I suffered on my previous pegulated-interferon treatment, and were anxiety related. Thus when I started to ‘feel’ side effects of this treatment I panicked and needed remind myself I was taking a drug potentially powerful enough to knock out a virus I’ve had for 30 years, so of course I would notice it in my system.
I’d done research on the drug prior to starting the treatment, and watched various of my peers take this medication, so was relatively informed.
I have noticed that the routine the hospital runs me through is not as intense as it was when I was on the interferon. No regular weigh in’s, blood pressure taking etc.
Today I was looking through online sufferers reactions to the drugs, including those who would love to take it to clear their illness but simply can’t afford it and I realise that this is yet another drug trial where fear of what could manifest means people, ‘the lucky ones’, are willing to pay 1000’s of pounds to use a new wonder drug that has not had its long term effects extensively researched.
The same happened with the peg-interferon. There was a given success rate of clearing the virus that didn’t take into account those that were unable to complete the treatment and those for whom the virus returned after its initial clearance.
Scrolling through comments sections on Epclusa, I don’t see the problematic side effects of the interferon but I do see side effects, I do see cases of the virus returning, and I do see possible post treatment manifestation of other illnesses. However seeing the heart breaking posts of those who cant afford this drug (including of veterans who contracted the Hep C in Vietnam) balances the risk somewhat.
So I’ll continue taking the pills. I’ve seen too many peers die horribly of illnesses related to Hep C, and though I’m relatively healthy (not drinking for 21 years has been a huge benefit of course) I’ve had times of liver related sickness that were horrendous and I’m aware that as I get older, these may well increase.
That’s today’s blog done.
Perhaps later I’ll write about my art but at this point it seemed more compelling to exorcise my fears and thoughts!