'MY HEPATITIS C JOURNEY'

Two months and a half have already gone since my first meeting with Kelvin and Vivien, it's gone so fast and now all is over, so here it is, the final result of our journey together, I hope you enjoy it!

'Kelvin Marshall was diagnosed with Hepatitis C in 2010, since then he has undergone two failed treatments, two liver transplants and a third treatment which finally seems to have controlled the virus. He is a very positive person and has always been sure his life would be back to normal after all.

My Hepatitis C Journey will take Kelvin and Vivien -his wife and best friend- through a fantastic trip, in which the act of breathing becomes a metaphor of the human journey through life and clay a means to express the unexpected route disease forces us to traverse, a walk from darkness to light, a walk that sooner or later we will all have to go through.

My Hepatitis C Journey is part of Perspectives: Art, Liver Diseases and Me, an international art project which, ponsored by the Faculty of Fine Art of the Polytechnic University of Valencia and AbbVie International, aims to give visibility to the disease, to help getting rid of the social stigma it may carry by offering positive visions of a disease, which can be sucessfully treated if diagnosed on time.'

REFLECTIONS ON ILLNESS AND PLANS FOR THE FUTURE

For the last 5 years and 2 months I’ve been living in limbo, unable to plan for a future that remained uncertain, and for the large part either too ill or unfit to do anything meaningful or worthwhile with my time anyway. That all changes now that I’m on the brink of a cure. All my reflective and contemplative moments during these past few years can now be articulated into solid plans and actions.

I’ve remained nothing but completely positive about my situation and prospects even through the darkest days of uncertainty and pain on this journey. I presume that’s somehow part of my DNA, but I’m painfully aware that not everyone feels like that. I’ve been enormously helped with my attitude by inspiration close to home, my younger brother Vincent. In 1971 a perfectly fit and healthy 17 year old football playing lad was struck down by meningitis. First the doctors didn’t think he’d live, then when it was clear he would, they said it would probably be in a ‘vegetative’ state. However, with nothing but his own determination to conquer adversity, he persevered and ended up teaching at a local school to work one on one with children with learning difficulties. He worked there for 25 years until retirement, his Christian faith sustaining him throughout. 

He achieved all this despite being left completely blind, having a totally paralysed left arm and partly paralysed left leg, all disabilities resulting from the brain damage caused by meningitis. And since then he’s survived more than 20 orthopaedic operations to correct problems caused by the paralysis, including 5 knee operations, 2 major ankle operations, hands, wrists, shoulders, legs and left toe amputations. I’ve never ever heard him complain.

It’s clearly worked for me having inspiration like that on my very doorstep, it’s allowed me to focus on courage and fortitude whenever it’s been required, and it’s worked for me. So even through the darkest moments of my own personal journey, I’ve always instinctively sensed and been able to concentrate on the light at the end of my tunnel. And now I appear to be approaching the end of this particular tunnel, what have I learned?

• Love my wife more (were that possible)
• Enjoy my family and friends more and surround them with as much love as I can
• Never take my health for granted and work harder to maintain it
• Help others whenever the opportunity arrives
• Do not leave this world with any regrets
• Fill every day with good memories, and be a bigger part of my friends memories
• Travel again to continue enjoying this beautiful planet we live on
• Don’t waste time on unnecessary things

THE 3RD TREATMENT

Looking back on the years 2010 to 2013, I was aware I had so far survived an out of the blue life threatening health scare, and although I was still ill with Hepatitis C, there was much to be optimistic about. For example, many new and wonderful drugs were now coming to the market with fantastic statistics on cure rates during trials.

Although my transplant had removed the old infected liver, the new one was already under attack from the virus. Hepatitis C is a blood borne virus (BBV), therefore it circulates in the blood, but finds the liver a perfect place to call ‘home’. So removing the old liver did not remove the virus, this had continued to circulate in my blood stream and soon zeroed in on a fresh new liver to attack. Therefore the disease and my symptoms remained, albeit the symptoms not as acute as before the operation.

So I waited patiently throughout 2013 for my body to recover and by the end of the year it had, notwithstanding the at times still extreme fatigue. Anyway, the recovery continued apace into 2014 to the point where I was chomping at the bit for the chance of another go at treatment to finally rid me of this pernicious disease. 

I knew from my conversations with the liver team at Birmingham there were various trials coming available. But obviously there would be many more deserving patients wanting places than places available, so there was no guarantee of getting on one when it came. But I did know my doctors were fighting very hard on my behalf to get me included.

Bingo, in April 2014 I’m nominated for a trial with a completely new combination of drugs and accepted onto it a programme starting in May. Blood tests taken at week 4 indicated the virus had gone, and further tests at weeks 8, 12, 16 & 20 also showed negative for Hepatitis C. I took my last pills on Sunday November 2^nd 2014 and will have to return to hospital for blood tests at 4, 8, 12 and 24 weeks to double check the virus doesn’t return after I stop taking the treatment. That scenario is always a possibility, but unlikely, in the vast majority of cases the virus is cleared permanently. My last clearance check blood test will be taken on Monday April 20^th 2015, and assuming the right result, this will be the end of being in limbo, 5 years and 2 months since I first realised something was wrong when I collapsed in Bali.

2013

It was good to be back home, but being out of hospital I was now responsible for myself. Without Vivien that would have been impossible. Simple tasks like getting out of bed were major undertakings with my stomach still extremely tender and full of staples. Going to the bathroom was impossible without help, and the effort of getting there invariably left me on the point of collapse. Trying to feed myself would have been completely out of the question.

Still we struggled through, but the twice a week visits back to Birmingham to monitor the op recovery, check the wound and take blood samples became epic journeys of travelling discomfort, both on the road and waiting in the clinic. After the staples were removed our visit schedule reduced to weekly, but the hospital visits remained epic journeys to be endured. The new medications I was now taking (28 pills a day) had my head in a spin and body in a permanent state of revolt.

A revolution intensified after the staples came out, because the scar became infected, and leaked badly for the best part of a year, nothing could be done to stop it. Any movement stimulated more discharge, plus there was the ever present threat of being caught short. Yes those sudden and imperative medicinally induced urges to get to a toilet in a rush did not leave me upon discharge from the hospital. They remained for about as long as my leaking stomach continued to cause problems. This meant there had to be a very pressing reason for leaving the house, because it was just too embarrassing for either a wound leak or pressing call of nature to occur whilst out and about or in company, and heaven forfend both would visit simultaneously. 

Hence it became easier and more comfortable to stay in bed and read or watch television. This wasn’t so bad as it was possible with some TV channels to watch never ending documentaries about many subjects I had a keen interest in. Exercise was out of the question while the wound remained open and infected, and my medical regime still had my brain pretty much scrambled. But I knew I still had to eat and made a special effort to force myself every day, even so I lost a lot of weight. I’m six foot tall with a slim build and normally weigh 70 kg. This was the weight I carried into hospital. Post operation this increased by 10 kg due to water retention resulting from the liver not functioning properly during life support and surgery, so I was 80 kg on discharge. By September 2013 I’d lost 15 kg of normal weight and was down to 55 kg. 

Therefore 2013 was a slow and very challenging year. Certainly the biggest challenge I’d ever faced in my life. But even though most of the year was spent in quiet but desperate recovery, there was much time for reflection and contemplation.

LIGHTS, CAMERA, ACTION!

Finally the date has come to shot, I feel quite embarrassed as Kelvin and Vivien have arrived ahead of me, on my defence I would say the tube was collapsed. George, the technician has helped as to get all the equipment ready, lights, camera and the green background, so we have been recording the whole morning, all breathing and being serious and also laughing, and I have poured loads of slip on top of Kelvin's head, I feel bad, I have been really lucky to meet these lovely people, they're always up for any of my silly ideas.

We were feeling a bit tired and hungry so we've decided to take a break, it seems the shot at the big studio has ended earlier than expected so George has set up the big screen there too, so in the end we've been able to get some shots of the full body. All is looking good, this has been a fabulous day, it was just a bit too sad to have to say goodbye at the end as that has been our last meeting, at least for now.

Setting up the studio

 

Action!

SOME EMAILS DISCUSSING ABOUT THE RECORDING

This is part of the email I sent Kelvin and Vivien before the recording so that they could have an idea of what was going to happen, a bit too long...

'Apart from that I feel very excited about tomorrow's recording as finally I have a more clear idea of what I am working on. My artistic process some times is a bit painful and I don't know what I am doing until the last minute, I work much from intuition which makes it a bit difficult to explain to others what I am really thinking about (as I don't even know myself in a way). So it happens that I wasn't sure about what object I could be making to represent your journey and project some images on top of it, I wanted to introduce some performative action as we talked before but nothing was making much sense. I have being working making some sketches of Hepatitis C virus in clay but very unsuccessfully I have to confess. Then I decided to start from the beginning again and re-read your texts and think about the chat we had when we meet and I guess it has been always there, in its name itself but I couldn't see it until now. You have always been talking about a "journey", a journey which has taken you outside what used to be your normal life (travelling, living in the middle of nowhere in Spain, etc) into a world of new experiences and emotions (crying, feeling weak, lost of control, anorexia, thinking about death but also hope and probably more self knowledge), and a journey it is something that has a beginning and an end, it is not like a cycle, it starts and it finishes at a point, so I thought the best kind of art to represent or express or talk about this matter should be a time based piece, that means a short video. That means I won't be making any object, the piece will be definitely just a video.

The video will be something very simple and the actions will be symbolic. As I see your journey through the disease it is not like a journey through a land but an internal journey which connects more with your emotional and personal world. I thought breathing could be a good metaphor of what means to walk through our lives, so basically I want to record you breathing. I don't need you to act, just breath, I will guide you so it will be a very easy thing to do, also I thought breathing has to do with yoga and meditation and I think this oriental-Indian world is something to which you connect very deeply. At a point I will ask you to close your eyes and keep on breathing.

When you close your eyes, I will insert images (when editing the video I mean, not in reality) of textures an places build with clay that will try to express the confusion and different emotional states through which you have been through since you realized you were infected with the virus. Then you will open your eyes again and you will keep on breathing and will leave. The journey would become a sort of dream or a nightmare as you want to see it, which as I said has a beginning and an end.

Some of my inspiration comes from this sentence which University of Valencia uses on their website about the Art and Disease project,

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

This dream I want to record will become a metaphor of this "other place" you have been obliged to walk through, but this way gets to an end after treatment.

Other references are video artist Bill Viola and animator Jan Švankmajer.

When you close your eyes I thought I would drop some liquid clay (which we call slip) on top of your head (sorry) so that it would cover your face, as if clay was the material of which this dream was made of, this slip dries out very fast and it leaves a thin coat which can be very easily clear, I thought the end of the dream could be marked by you clearing this clay from your eyes to open them again. I am not sure about doing this, I will make some tests today and we can discuss it together. I don't want you to do anything which may make you feel uncomfortable. We will see tomorrow.

Just to finish a few technical issues about the recording, bring normal clothes you like, just we need to avoid any logo or brand name, any bright green or royal blue colour, any stripes, this is because of the recording with a green screen so that I can create a fake background on my computer, it is the system they use to record the weather forecast, I am sure you have seen it before. If you want to try with the clay bring an old shirt, I have had accidents with the slip before and it has always washed out but some other people says it can bleach lightly, so better not to take any risks.

Also if you have any picture from your travels, like landscapes or city landscapes, it would be nice if you could borrow a couple of them to me so that I could scan them and use them as background for the video, or of you have them in digital format just send me the file by email, if not don't worry I'll find some myself.

I hope I didn't bored you too much with this massive email,

Looking forward to seeing you again,

Regards,

Susana'

And this is what they answered:

'We are not at all bored by your email. We understand everything you want to do and agree it seems a very simple and powerful way of communication.

Just to be clear, I have always felt so positive about my chances to beat this virus that no tears were spilt on this journey, not from me anyway, I know my family were very worried, but apart from the time I spent in Bali hospital very confused and unsure what this disease meant, I have been very focussed and positive for the rest of the time.

I will bring a selection of tops for you to choose one, I will also bring my laptop for you to select which background pictures you want from our travels. I will need access to the internet to send them straight to you in the studio, if this is not possible, I will email whichever ones you choose as soon as we get home. We have some stunning sunsets taken from the cortijo and many fab, groovy, windswept and interesting shots from our travels.

I have to say I'm quite excited by your new concept and will do everything in my power not to bugger it up, simple works for me. I can't wait to see what images you come up with as background to my closed eyes, my thoughts during this journey will be based solely on the idea of getting better and will not be a nightmare. But if nightmare works better for you Susana, you must do what you think is best for you as an artist, I will agree with whatever you want to do.

I love your piece from the University of Valencia, it's very powerful and mirrors exactly my own thoughts. I felt exactly that I was 'obliged' to identify and deal with being in that other place. Brilliant, it's a beautiful analogy from a kindred spirit.

 

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” 

Just a thought, if you think the message might be more powerful with be bare torso with the transplant scar visible, that could be an option if you prefer (unless it's freezing in the studio)!

We're both really looking forward to seeing you again tomorrow.

Kelvin & Vivien'

 

To what I pointed, 

 

'Hi,

I forgot to mention this sentence was written by Susan Sontag, a writer, filmmaker, and political activist, I think she had a cancer and during her experience she wrote a book called "Disease as Metaphor" where this quote comes from, she was really good, she wrote very interesting things about the interpretation of art too. About the images when you close the eyes my intention is to create something very abstract, ambiguous, like emotions, I am thinking in textures made with clay and inspired by the images of the virus probably, so whether this is positive, negative, a dream or a nightmare would be up to the viewer's imagination, I won't be giving any determined point of view but a suggestion, in art I try not to impose my meanings over others so this should remain open, anyway, when you "wake up" from the dream you may smile or laugh, which I think could give this sort of happy ending feeling which describes your history more than probably others, we can discuss this more in depth tomorrow, also about the half nakedness, which I think could work very well, but let's see which temperature we find as sometimes college is literally freezing...and many thanks for finding some travel pictures for me!

Thanks a lot for all your help,

Looking forward to seeing you tomorrow again,

Susana'

 

So yes, now we are ready for recording, all is clear and everybody is happy, by the way, Kelvin is trying to find Susan Sontag's book as he relly found this quote so inspiring (so do I).

POST DOUBLE TRANSPLANT RECOVERY

Fortunately for me they found one and good job too, because if they’d failed to locate one I believe a body with failed liver function can only last for about 72 hours on life support before irreparable damage occurs. So on Dec 11^th 2012 I received my 2^nd liver transplant. When I came to after this latest episode, I do have to admit I was feeling slightly under the weather. Life support makes your brain swell, therefore your head swells to accommodate it, and the pressure causes the blood vessels in your eyes to burst. 

I entered hospital feeling fairly fab, groovy, windswept and interesting (well I sort of believed it and that’s all that mattered), but I came out of surgery looking old, bloated, tired, ill and worse for wear, resembling some sort of ‘thing’ from the bottom of the swamp one describes to scare one’s grandchildren during bedtime stories. Back in intensive care my blood was now coursing with an ever expanding range of exotic chemicals to compensate for the surgery. Anti-biotics to prevent infection, immune-suppressants to prevent liver rejection, anti-acids to prevent acid release into the stomach, steroids to do what I can no longer remember, soluble aspirin to reduce the risk of blood clots through the hepatic artery, a CMV infection inhibitor and lots of other stuff too. I even gained 10kg in weight caused by a non-functioning liver during the surgery/life support process.

My whole body was swollen, my genitals looked like a spitting image caricature of the real thing, my stomach was swollen, tender and full of staples, my mouth and nose were crusty, and my bloodshot eyes were capable of turning the nurses to stone Medusa like were they to accidentally gaze upon me without making the sign of the cross first. However, the hospital staff were necessarily brutal in their regime of ‘encouraging’ patients not to feel sorry themselves, suck it all up, not to be wimps, and get the hell out of bed (not so easy when attached to a bewildering display of tubes, bags and surgical accoutrements). 

Hey ho, after 13 days I was ready for discharge, just in time for Christmas, December 21^st 2012. On that day I was finally disconnected from the last encumbrances to my freedom, the catheter, cannula and assorted drainage bags. But the intervening 13 days had seen some spectacular dashes to the porcelain chariot situated in the adjacent en-suite with markedly varying degrees of success and disaster. For those often and urgent impulses to engage oneself in the chemically induced throes of peristalsis would invariably arrive with barely enough notice to disengage oneself from one’s oxygen mask, untangle one’s wires from the cannula to the drip, electrically haul oneself upright enough in the bed without ripping ones staples out to then swing one’s bloated legs over the edge to begin the mad dash, which might all prove ultimately unnecessary anyway, for ignominious failure was often already upon one, resulting in that plaintive and hesitant call for help…………. Nurse!!!!!!!!!!!!!!!!!!!

CERAMIC OBJECTS (4)

LIVER TRANSPLANT

That weirdness only lasted for 20 hours. At noon on December 8^th the co-ordinator rang again to announce they’d found a suitable liver and could I be at the hospital within 2 hours. The car journey from Swindon to Birmingham passed in a blur. As basically did the next 12 months.

Upon arrival at the hospital forms were filled, documents signed, tests done and then up to the ward in preparation for surgery which was due for that same evening. There was virtually no time to think, let alone panic, and I entered the whole process feeling somewhat calm and relaxed in a philosophical sort of way. I mean, the situation was what it was, without this transplant my chances of a full recovery were far worse than they were with it. I trusted the doctors and the hospital implicitly, so I just submitted myself to their care and quite happily drifted off into la la land under anaesthetic leaving all my other cares behind. 

I do remember waking up after surgery. First thing I saw was Vivien’s face and it wasn’t surrounded with a halo and she wasn’t wearing white, thus indicating I was still alive and on planet earth. So that’s good then! Second thing I felt was slightly more than the weeniest tadge of discomfort when I tried to move. Apparently some of the medical team had taken advantage of my anaesthetized state and fastened me to the bed by tubes attaching themselves to lots of different bags they’d thoughtfully decorated my bed with. Third thing I thought was ‘how the hell do I go to the loo? Vivien obviously read my turmoil and pointed to the tubes leading to the catheter and poo-bag hanging decoration like off the end of the bed. Total bliss, I had my best friend looking after me, I could pee and poo in bed without getting up and I was being fed through tubes. Surely it doesn’t get any better than that.

Feeling quite content with my new life (apart from the weeniest tadge of discomfort when I tried to move) I drifted off into la la land again as the latest instalment of pain killer found its way into my blood stream from one of the many drips dispelling multifarious medications through the plethora of tubes attaching themselves to various parts of my body through a system of ‘spaghetti junction’ like complexity. And that was that for a few days, as unbeknown to me in la la land, this transplant failed after 36 hours (a record I believe), leaving the surgeons with no option other than to put me on life support while they desperately searched for a new liver.

CERAMICS OBJECTS (3)

LIVER TRANSPLANT ASSESSMENT

And so I entered Birmingham hospitals Liver Transplant Assessment programme where prospective patients are assessed for their suitability for transplant. This involved attending the hospital on 19^th November 2012 to undergo a variety of tests including chest x-ray, echocardiogram, ECG and blood tests. Then we met with a transplant co-ordinator who gave us information about the rest of the assessment and answered any questions we had. At the end of the day the co-ordinator confirmed the consultants would review today’s results and decide if they considered me a suitable candidate, in which case further assessments would be required. 

Well we passed phase one and were recalled for 2 more days of tests and assessments on Dec 4 & 5^th.

It was made clear to us during these assessments that even if accepted, this was no ‘guarantee’ of actually receiving a transplant. There is always a shortage of donor livers; hence we might be waiting for possibly up to 3,6,12 months or maybe longer for a transplant. It was not unknown for some patients to die while on the list.

Dec 5^th was a Wednesday, and at the end of the day’s proceedings we were told the consultants met every Friday to review all the assessed patients and decide whether or not they were to go on the waiting list. Either way we would be called on Friday afternoon. So Vivien and I went home that Wednesday evening on tenterhooks awaiting Friday’s judgement, which came at about 4 o’clock. The co-ordinator said we had made it onto the list and she sounded genuinely thrilled for us. She also re-iterated it would be our responsibility from today to always have an overnight bag packed ready and waiting for the phone call to get to the hospital urgently were they to find a compatible liver, bearing in mind the hospital was over 2 hours away. She did warn us there might be some false alarms, because it was entirely possible a liver from another part of the country initially deemed suitable for me, might turn out not to be so under scrutiny on arrival at the hospital. 

But some hope is better than no hope, the tumour was small (but growing), and there was always surgery or radio/chemotherapy in the interim if a compatible liver proved difficult to find, although I do have a common blood type which increased my chances significantly. After that call our emotions were running high, it felt like we had come to the end of a very difficult 22 months, only now to be standing on the threshold of a different uncertainty and still staring into a future that held no guarantees. Weird feeling!