The appointment was for 3.45. At 4.15 I will still be sitting in the waiting-corridor, waiting.
I’d long ago given up reading my book, a surprisingly engaging socio-history on the Iberian Peninsular post-Franco, when I raised my head to look briefly around.
I was glad Dick wasn’t with me. He’d be all stiff-upper-lip, or stick-uppa-arse as I frequently pronounced it to his face. He’d be freezing me out with his theatrically dignified grin-&-bear-it demeanour.
One empty seat separates me from a low coffee table of magazines and a twittery woman in the next chair. Our backs are against the wall. She’s picking through the magazines and chattering non-stop. She’s wearing a screw’s uniform. She’s chattering away non-stop to a male screw, who is hand-cuffed to a blue-clad man sat between them. The screws are slagging off an absent work mate for being obese. The prisoner between them is silent, he’s thinking he might die of this awful disease, alone, in prison. It is after all ‘an incurable disease’ that we are waiting here for.
This incurable disease we’re all here consulting about today was discovered and named in 1989, through a quirk in a test which was designed, but failed, to detect HIV efficiently. Obviously long-term prognosis is difficult to assess, since there are no long term statistics. I have heard and read that those with this disease will die within 40 years. 40 years sounds like an awfully long time to me. Sometimes I think this disease is a psychological test I’m being expected to pass. And there’s a good chance that the poor sod in nick won’t have to die alone and in prison, not from this disease at least. I have read on the internet that the stored blood of WW11 GIs was tested and comparing the small percentage deemed positive for the virus with those who were negative, the research found no significant incidence of premature death in either group. Nobody died prematurely of this disease, it seems to be saying, or at least, no American soldiers did. That’s the internet. In reality, a good percentage of those diagnosed were infected via transfusions of contaminated blood, and/or already have to contend with serious health or lifestyle issues, aside from the liver infection.
The appointment was for 3.45, but I left home at one o’clock. I’d decided to wander my way to the hospital on foot, without aim and nearly four hours early. My trip to the liver clinic was to be prolonged circumambulation, an extended walking meditation, a ritual preparation for the appointment with the consultant. I packed a sandwich, a bottle of water, a spare jumper and a book to read. I had no map. This was to be a picnic, a day-trip into disease, a psychogeograhical ramble through the occulted illness of the cyberage. I want to walk & sit & picnic in the quiet places of the city. To think alone about the appointment, my first in five years, the disease and how it has threaded through the past eight years of my life.
I was diagnosed with the disease in the winter of 1999. I felt that I’d been told I was going to die. The Genito-Urinary clinic sent me a folded A4 sheet on the illness. My disease was incurable and infectious. It might as well be HIV, but it wasn’t.
At this time Hecate, the witch queen, the dark crone aspect of Robert Graves’ triple lunar goddess called to me, she became my only guide. Cowled in darkness, she crept through my dreams. Disease and death dripping from the tendrils of the black cloak she wrapped me in, she carried me weeping into the darkest, safest corner of her cave. I withdrew into myself, perhaps never to return.
Subsequently, I have come to realise that ‘incurable’ only means that modern allopathic medicine has no known drug which will clear the living virus from my system. This disease is only ‘incurable’ within a strict, narrow band of meaning of the word. That’s my take on it. Understanding the limited meaning of the word ‘incurable’ led me to find out all I could about my prognosis. I went to the local library.
I set off at one, initially striding along the back routes from my house. Along the back of our house & garden runs an unpaved alleyway, wriggling out an existence in the gap between the backgardens and the allotments beyond. It’s a scrubby, overgrown, wasteland sort of place. Sometimes it feels like a country lane, at others it is downright strange. People at twilight appear out of the bramble bushes in bizarre costumes, they always say hello in a familiar way and have disappeared into the unlit gloom as you turn back to look. I once wrote a poem about it called The Alley Way Between The Worlds, but I’ve lost the notebook it was in. Lost or misplaced or whisked away by those pesky fairies.
I went to the library, took notebooks and jotted everything down. I read dozens of books, but very few on my specific disease, not many had been published, it was too new, too untested.
At other times, later, Hecate was a wild mud-spattered old woman in the woods. Delighting naked, like in medieval woodcuts, dugs dangling, hair matted but unfettered, a galloping soggy old mare, frolicking between the trees in the dappled light of a yellow full moon. How we laughed!
By quarter past one I am sitting on a bench in the recreation ground near my house. I feel odd, out of place. A man is walking around the shadowy woodland perimeter of the park, he’s doing dog-walking things, throwing sticks, picking up shit with a plastic carrier bag. He seems far, far off, swimming with his dog in an undulating heat-haze, in a different reality. Yet from that distant reality I feel his eyes burning at me, branding me a weirdo or wino. Sitting on a park bench alone in the afternoon, without even a dog for an excuse. Other people in the park are walking babies and toddlers. I can’t believe how self-conscious I feel, I fumble with my water bottle to make it seem that I have a purpose here. But I’m not convincing myself, I’m just on my way to the hospital, slowly. So I stand and move on.
I read books about the function of the liver – basically it does everything except pump blood around the system. Everything you put in your body has inevitably to be processed by your liver. Fats, sugars, herbs, booze, cups of tea, intoxicants, toxins, etc all have to be converted, stored, neutralised or whatever by your liver.
The recreation ground near my house is a sward of clipped lawn, there are some goalposts, it is surrounded by medium sized trees, dotted along the perimeter of the grass area, forming a thin-ribbon of woodland-like shade before being hemmed in and bounded by a palisade of wrought-iron pikes. It reminds me of a park near my home in Leicester, which was on a steep hill and was gargantuan by comparison. However, the overall shape of the two parks is remarkably similar, perhaps they’re a similar age. I gaze at the grassy expanse, meander along gravel paths, weave through a ribbon of woodland shade, parallel to the palisade until I reach the far corner and the gate. By the gate is a rubbish bin, exactly like the one in the Leicester park. I ‘swish’ between the two parks and try to grasp the changes that have overtaken me since I left Leicester five years ago, but I find myself seeing similarities, points of non-change, sameness. Apart from the sign on the Leicester bin that reads “Please do not feed the rats”, the park gates remain interchangeable, I am still where I am still, on my way to the hospital, slowly. I pass through the gates out into the boiling street.
I read up about related diseases, HIV obviously, but also ME, kidney failure, IBS, insomnia, liver cirrhosis, liver cancer, lymphomas, flatulence etc.
I have walked many streets in this head-state, I have a vast store of memories of wandering aimless urban street, in search of nothing in particular, in Paris, London, Amsterdam, Spain all over, Germany, San Francisco, Mexico here & there. The head-state is almost trance-like, it involves an absolute suspension of expectation and a tempering note of vague disorientation. Somewhat like being lost, but without using the word. Lost to time, not space, I know these streets by heart, but I’m refusing to react in customary ways, I am refusing to react. I am sucking up familiar sights, yet refusing to recognise them. Today is not the same as every other day, I am on my way to the hospital, slowly.
I cross Mill Road into Coleridge and formulate a plan to stroll along Radegund. This gives my meander a meaning & mission. Find the peace & quiet to think in. Radegund is a wide road with very little traffic, it has wide grass verges and off-street parking. The houses are big and spaced well apart. There is never anybody walking there. I know all this before I reach the street, but I’m trying to approach Radegund as if I’d never walked it, without expectation. To simply encounter what exists there and to note its effect on me as I pass through.
The disease is not sexually transmitted. It is only infectious via blood to blood contact. Transfusion of contaminated blood is one route, one that is common among haemophiliacs and others who received transfusions prior to 1990 when donor blood was first routinely screened for the disease. Another common route is IV drug use. It’s not big and it’s not clever, so don’t do it. However, as readers of my earlier works will appreciate, I was once an avid/rabid junkie haunting the backstreets of the madrileño madrugada. So I can’t complain now.
The appointment with the consultant is at 3.45. I reach the crossroads of Coleridge & Radegund about half past one. The pedestrian crossing drops me the wrong side of Coleridge and I find myself following the course of a wrought iron palisade, demarcating the boundary of another playing field. This playing field is bigger than the rec. near my house, the woodland style shrubberies denser and more enclosing. I can hear, but not see children playing with their parents in the playground. I follow the palisade for what seems like a very long distance, a feeling of exclusion begins to overwhelm me, I am physically barred from entry into the garden. The edge continues on for a very long distance, almost to Rustat Road before a break and a gateway appears in the boundary.
Having a blood-borne disease has made me very sensitive to the possibility of transmitting the disease through blood spillage. The hospitals seem to like to take a lot of my infectious blood, and always the cards you queue with carry yellow stickers declaring INFECTION RISK FROM BLOOD. Ringing the bell ahead of me “make way, leper coming through, mind your backs”. I have had altercations with haematologists who refuse to wear surgical gloves.
But mainly, Hecate sat in an old rocking chair, black cloaked and hooded, seemingly drowsing by the entrance to her cave, where I slip by with barely a nod, to lie in the dark and cry. Hecate guarding the entrance to my own deep grief and bewilderment.
With some relief I finally come to the wrought iron gateway of the park and swoop inside, veering away from the clamour of the children’s playground, I head along a gravel path that leads me through the middle of a thick shrubbery and out the other side, onto a quiet path edging the open clipped grass, with park benches invitingly dotted along it. It is just past half past one, a sensible time for lunch, when I sit down and take out my sandwiches and bottle of water. I am suddenly aware that I appear just like an office worker eating their lunch in the park. I enjoy and relish the role, it’s one I’ve done for real on a number of occasions. In my experience, it is about the only compensation lowly clerical temporary dogs-body jobs offer; the opportunity to sit on a park bench and eat your sandwiches in peace.
Knowing you will die yourself is one thing. Knowing you could infect other people with your death is another wholly more horrendous realisation.
The appointment at the Liver Clinic was 3.45. At 4.15 I am still waiting in the waiting-corridor.
The two screws and the prisoner have been and gone. The consultant peeps his head round the consulting room door and calls somebody else’s name. An old large woman in a wheel chair is pushed into the room and the door closes. I read the notices about diabetes again that are pinned on the wall.
This morning as I was downing my post-breakfast vitamin pills, before I left the house, I decided to wear my black necklace with the five sky-blue glass-beads strung on it. I think of the blue beads as eye motifs, like the African or Mediterranean blue bead talismans against the ‘evil-eye’, often found dangling from taxi dashboards or in Malta painted on the prow of traditional fishing boats. I like this necklace, with its five blue glass beads and its implied quintuple evil-eye repellent, I feel safer than without it.
About half past one I sit on the park bench and eat my sandwiches, sip from my water bottle, gaze at the grass, at the sky, at the same archetypal urban park structure (greensward, path, wooded edge, wrought iron palisade) which is opening out to my eyes again. I don’t think anything much, I smoke a roll up. Out of the corner of my eye I catch the darting disappearing swoop of a dragonfly. I settle myself, gazing between the line of the earth and the sky, in the place where dragons fly. I see it flit past again, and over again, and again. There were two dragonflies, one bronze-golden, even to the threads of the veins of its wings, and one rizla-packet blue, that flitted and flirted with me one long hot summer in my backgarden. I watched them everyday, as they rested on upright bare bamboo poles in the heat of the day. I watched their stillness and their colour, and tried to emulate the feel of it in watercolour, felt-tips, crayons. But the colour of the dragonflies was too deep, too layered, too iridescent for me to capture. Once a lone dragonfly, dark black and prowling, drove us from a Lakeland waterfall.
At two o’clock I stood up abruptly, packed away my packed lunch, and strolled off purposefully towards the wrought iron gateway at the far end of the park, as if I really were on an office lunch break and had a job to get back to. I sustained this determined pose until I was back on heat-ridden Coleridge Road. Then I fell back into confused dawdling. I am on my way to the hospital, slowly. The tower of the hospital gleamed on the horizon above the rooftops. I turned right along Coleridge towards Cherry Hinton Road, and missed Radegund entirely. It took me a long while walking and thinking before I realised I’d missed Radegund. In fact I was along Cherry Hinton, half way to the ring road, just by the Golden Buddha Chinese Take Away, before it finally dawned, and by then I’d formulated a plan to treat myself to an ice cream from Pernella Stores. So I kept right on.
I spoke with Hecate alone regularly by the moon, visualising, pathworking, meditating and performing ritual. Once she showed me a divination system involving as many short sticks as it took to spell out the phrase NO FUN. She picked them up one by one, threw them in the air then rearranged them into other words. She kept me occupied all afternoon.
After blood tests the hospital want to take an ultra-sound scan of the liver. This is painless and if anything a little boring. Twice I have had this test and twice it showed no visible scarring or inflammation, no damage to adjoining organs or arteries. I have no symptoms, I have no damage visible on an ultra-sound scan, I am not complaining about anything, I feel perfectly well.
By quarter past two the mission for ice cream has hit serious snags. Having skipped Radegund, I have overshot Pernella Stores, I find myself unexpectedly standing at the point where Cherry Hinton disgorges into the ring road, the Budgens roundabout. For a few moments I am dumbfounded, my psychogeographical sense thrown into disarray. I was lost, but I couldn’t use the word. In deciding to detour back along the ring road to Pernella, rather than face the psychic onslaught of a supermarket, albeit a tiny local Budgens, I am once again on my way to the hospital, as slowly as possible. I turn left, and trudge past the traffic, away from the hospital, anticipating ice cream and half an hour successfully wasted.
As far as I am able to determine none of my test results have shown up anything abnormal in my liver or my blood, yet this does not seem to satisfy the liver consultants and their lust for flesh, real living flesh in the form of a liver biopsy. Biopsy is the same as vivisection, living autopsy. They cut a lump out of your liver, while you’re alive. So far, for eight years, I have refused all offers of a liver biopsy for purely childish, squeamish reasons. However, I have a theory that these childish phobias, of heights, snakes, enclosed spaces, fast machinery, having parts of your organs removed while you are still alive, still awake even… These sorts of fears are utterly rational and I refuse to be shamed into renouncing them.
The ice cream driven ellipsis around the ring road is a bleak and tiring detour. Like Radegund, the ring road is lined by large, well-spaced houses, driveways and wide verges, but there the similarity ends. Where Radegund is a peaceful traffic-lite backwater, the ring road is the main route for anyone leaving or entering the city, often in long drawn-out exhaust fumed nose to tail-backs. The walking is heavy going, lonely pavements staring off into the distance. Progress is slow, the next roundabout indistinguishable on the flat horizon. The long way is straight, like a Roman road, it seems to stretch forever. Will I never find the ice cream I seek?
Sometimes I am utterly crushed by the thought that I am underestimating this disease. I have survived eight years without medical treatment, just tests and monitoring, and that includes the five years when I actively refused to even register with a GP. What can they do anyway, it’s incurable for them and I don’t have any symptoms. When I was first diagnosed it went through me like a dose of salts. My lifestyle changed within weeks. I stopped drinking, took vitamins, started eating and sleeping regularly, tried out herbs, consulted a homeopath, cut out class As, looked after my liver. So far I have maintained a militantly-self-guided vaguely-naturopathic non-interventionist approach. But what if I’m wrong. What if I really am dying everyday and nobody can do a thing about it?
Far off up ahead, faint in the mist-filled distance white-haired Hecate winks. I see her mouth form the word BOLLOCKS!
The array of ice creams at Pernella Stores is poignantly inadequate, particularly in view of the arduous detour, but it’s now half past two with my 3.45 appointment approaching rapidly. I need to get back on track, just on my way to the hospital, slowly. I grab a Magnum and crawl back along the ring road, doubling back on myself and cursing the over-priced choc ice on a stick. I feel that everybody is sneering at my ice cream, but really there is nobody around, just the endless traffic seeping in and out of the city all along the ring road.
Psychologically, I found regular tests and hospital visits stressful and damaging. Sickness seems to hang in the air in hospitals, it feels like they’re trying to extract illness, rather than impart healthiness. It feels so wrong.
At quarter to three the hospital gleams before me. I enter a whole different psychogeographical terrain once inside. I need to get my bearings, I am at Outpatients Reception, I have an hour to go. I determine to find Clinic 12, then go and have a coffee and cake, read my book and be cool, ready and waiting by 3.30. I look around at the signage and begin following arrows to Clinic 12.
Just because they tell me I’m ill doesn’t mean I have to become ill, particularly if I don’t feel ill.
The signs for Clinic 12 peter slowly out, then disappear entirely somewhere before the GUM clinic. Gleaming endless low-ceilinged corridors stretch on in gloomy ominousness. It’s at times like this I wish I hadn’t read so much H P Lovecraft, as the corridors soon begin to take on the appearance of the caverns of the blasphemously pyramidical Old Ones, their implausible geometries unspeakably ancient, even to slime-exuding Pre-Atlanteans… Not a good omen.
They’ll probably want to weigh me, what if I’ve lost weight again?
I aimlessly now wander the hospital corridors and emerge blinking into a retail court, I feel I have stumbled accidentally into an airport, or worse, onto a cross-channel ferry. Everything is here; newsagents, underwear kiosks, cafes, convenience stores with ice cream facilities far superior to Pernella, there are mortgage brokers, insurance companies and ATMs. It’s like a whole retail village. Now I am very lost and I’m beginning to use the word indiscriminately.
Where is Clinic 12? Is there a Clinic 12 near here?
I ask a person in a uniform the way to clinic 12, she tells me to go all the way back to outpatients, which seemed to segue seamlessly in and out of airports and cross-channel ferrys, and ask at reception. As I turn away I notice her name badge says she works for Costa Coffee.
The only treatment available on the NHS at this moment is Interferon therapy. I have not had any experience of this, but I am discouraged to try by a low success rate, a reported 20%, and by reported contra-indications and side effects of the drug. At a support group I had a conversation with a very ill-looking man, who was on the therapy. I then spoke to a very well-looking man, who like myself had had no treatment for the disease. A consultant early on in my disease dismissed my assertion that I had no symptoms and did not feel ill with the alarming claim that “none of my patients have any symptoms when they first come to me”.
At three o’clock I am sat by a frosted window drinking cheap coffee in the WVRS cafeteria, reading my book of modern Spanish history, with 45 minutes in which to unscramble my brain and work out how to ordeal with this consultant’s appointment.
Another time, in anger at imagined betrayal – How could you let THAT happen to me! – I ran Hecate through with Joan of Arc’s akashic sword of truth. Scowling she lifted herself from the floor unharmed, complaining that as I had just tainted a perfectly good ritual sword we’d have to start all over again from the beginning.
If Interferon therapy is the 20% chance of life, over drawn out liver-rotting death, then the fact that Interferon is contra-indicated for women who are pregnant or would like to become pregnant, throws the whole dilemma into a weird ethical mobius strip, where arguments about life and death become hideously intertwined, with a final Lovecraftian flourish.
The appointment was scheduled for 3.45. At 4.15 I am still sitting, back against the wall, in an empty waiting-corridor. The consultant peeps out of the Consulting Room door and booms out my real name. I imagine he’s cooing out “Anita Roddick, we’re ready for your screen test now”. So I swan Gloria Swanson-like into his cramped consulting cupboard. He’s young and sweaty. He says to me, “So, you’ve got Hepatitis C. How are you feeling?”
Bella Basura September 2007
First printed in Silver Wheel Journal 2