50th EASL INTERNATIONAL LIVER CONGRESS. VIENNA. AUSTRIA.
'My Hepatitis C Journey' will be displayed at 'Perspectives: Art, Liver Diseases and Me'. 50th EASL International Liver Congress. Vienna. Austria. Come and take a look. Reed Messe Congress Centre, 22-26th April.
CERAMIC ART LONDON 2015
'My Hepatitis C Journey' will be displayed during Ceramic Art London,
17th April, at 'Diaspora', one of the Tony Ainsworth Memorial Lecture
series given by professor Martina Margetts.
'DIASPORA
One definition of Diaspora is: ‘the spread or dissemination of something originally confined to a local, homogeneous group, as a language or cultural institution; the diaspora of English as a global language’.
This lecture considers how and why the language of ceramics in Britain has spread its influence. The focus will be on contemporary practice.'
It will be a unique oportunity to watch the short film in a big screen.
'DIASPORA
One definition of Diaspora is: ‘the spread or dissemination of something originally confined to a local, homogeneous group, as a language or cultural institution; the diaspora of English as a global language’.
This lecture considers how and why the language of ceramics in Britain has spread its influence. The focus will be on contemporary practice.'
It will be a unique oportunity to watch the short film in a big screen.
'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!
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.'
'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?
- 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.
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 2nd 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 20th 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.
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.
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.
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.
.jpg)
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.”
Other references are video artist Bill Viola and animator Jan Švankmajer.
Susana'
And this is what they answered:
'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).
Subscribe to:
Posts
(
Atom
)