Digital Insides

# 3 Phil Martin

P:About ten years ago, I started having problems with my little finger and a neurological exam showed I had a problem with my elbow, but not bad enough to do anything.  Much more recently I developed a Ganglian cyst on my wrist. My GP wanted to have it checked and when I was at St George’s having it lanced I mentioned that I’d started dropping things. Eventually they diagnosed Cubital tunnel syndrome and two weeks later I had surgery.  I went home and at the weekend I didn’t feel very well at all. By Saturday evening I started throwing up and was in a lot of pain in my chest area. My partner asked if I wanted to see a doctor and not being a drama queen about medicine when I said yes she called 999.  Before the phone was down there blue lights outside the house. Middle-aged-man-with-chest-pain rings alarm bells. The rapid response guy came in and slapped in ECG on me, but it didn’t look like a heart attack.

I took this photo as I was wheeled in to A&E majors. I felt scared and important. ‘We treat people who have a serious ailment or injury.’

L:I wonder who that is directed at?  What is the value of that statement to someone who is being admitted to hospital?

P:When we got to St Georges they ran a few tests and there was no indication that I’d had a heart attack.  ‘We think the pain killers you were given post-operatively have stripped the lining of your stomach.’ They gave me something to stop my stomach producing acid. Then a nurse came back and said they had been asked to repeat the ECG test.

L: Did they tell you why they wanted to repeat it?

P:No no no. The nurse – nurse! – came back after half an hour and said, ‘The cardiologist thinks you might have Brugada Syndrome. It’s a serious condition and you need to go and see Dr Behr. Two days later I was in to see him.  He did another ECG and the results were indicative of Brugada but not enough for an immediate diagnosis so they had to do another test. It’s a problem with sodium channel in the heart, so at a moments notice my heart can go into an arrhythmia, and stop pumping. It could be aaah…yes…. It was only discovered as a condition in the 1980s.

L: So many people would never have been diagnosed.

P:The main test they do is called an ajmaline challenge. They inject a sodium channel blocker.  The idea is that if you have the syndrome it will induce the symptoms, in a very controlled manner. They inject it while you are hooked up to a machine.  They inject it quite slowly. I asked the nurse to take a picture. It’s absolutely awful, I’m all scrunched up in a chair. She said a lot of people ask her to photograph them. Young people want to document everything for their Facebook pages. These are the results: I scanned them. To me they are unintelligible, but to a trained professional….

L:I am interested in this idea of unintelligibility.  Representations that are completely meaningless to the patient.

P:I know that this line is the baseline before they inject the drug.

L:It looks like one of those lines showing the financial crisis….But here we have your heart performing, as a line.

P:That was enough to give me a diagnosis.  Spontaneous Type 1 Brugada.  You can die suddenly. They wanted to do an MRI to check there were no congenital problems in the heart. I was invited to the 3 Tesla MRI Unit down in basement. When I arrived there was no one around. It was cold, uncomfortable and dark and I wasn’t feeling particular happy about being there. A nurse wanted to talk to me about cricket, which I have no interest in. She then stuck lines in my arm, which I wasn’t expecting, and told me the test would last 45 minutes. I lay on the bed, which was narrow, and then they put an extremely heavy chest plate on me, and fastened it tightly, all without telling me that they were going to do it. While she trussed me up like a turkey she was talking to someone else in the room, not to me. At which point I said, ‘Get me the fuck out of here.’

L:Do you suffer from claustrophobia?

P:A bit, but not massively.  But I couldn’t move and was in the middle of a very long, closed machine, a small tunnel, and started feeling like I was being buried alive.

L: Do you think it would have been more bearable if you had known in advance?

P:Yes I might have been able to prepare. And I felt ignored which isn’t nice in that scenario. I know they have to do it everyday, but the patient doesn’t.  I was invited to another hospital with an MRI machine with a bigger aperture. There were a few of us – difficult MRIs – and it was a Saturday so the staff had come in especially.  They introduced me to the machine, and asked how I felt. I said ‘not good’.  They tried to negotiate it with me and I just thought, ‘I can’t do it.’

P:That is an echo machine. The beauty and brutality of the machines.

L: You are photographing the machines that are imaging you.

P: Look a blue armrest, like a friendly smile. Blue is a soothing colour, red would be too much.

L:Yes watery. It has the right affect. Oceanic.

P:I made a short video of the echogram. It’s difficult as the patient: you roll onto your side, so that your heart is closer to the front of your chest and they can get a better picture. Someone sits behind you literally on the bed, they reach over you and they are looking at the screen. They are actually touching you. I didn’t feel worried or threatened even though I was half-naked. It’s almost comforting.

L:That’s very atypical.  A lot of scanning is so remote, the patient and the radiographer are completely separated.

P:The woman who treated my elbow, she was absolutely brilliant, but I didn’t feel like a human being, I felt like a collection of symptoms.  At one point she asked if I would be a ‘walking dummy’ for her patients.  So I agree and performed as a patient.  Something about being a patient, it’s a very lonely experience, it doesn’t matter who you go with, and nobody that you know can do anything about it. They can be there but it’s still a lonely feeling.

L:Imaging seems like the epitome of that. The architecture divides the patient off from others.  With MRI, X-ray and CT the staff are behind glass, there’s not much to mediate that space.  There is a feeling of distance.

P:Yes, feeling disembodied. The separation is necessary for staff protection. There are things about being a patient that are inescapable. It is very isolating.  Because I wasn’t feeling ill but had all this being done to me I felt more willing to be challenging. It’s very intrusive and intimate and there’s a complete loss of privacy and when that goes on for a long time some people just say they’ve had enough.

***

P:I’m a very interested in privacy issues. I used to work in IT security. Cyber security is based on the idea that we can see the bad guys but they can’t see us. It’s a fallacy. There are holes in the defenses and if you can see them, they can see you. Yet I’m not that bothered about my own privacy. I just take my clothes off. The number of time I’ve taken my clothes off completely unnecessarily in hospital!

L:The spaces for undressing have to be carefully negotiated – they are so small.

P:I wish I’d asked the nurse to take a picture of me.  There a whole bunch of them that do these tests, I’ve never met her again.

L:They are very touchy about photography in hospitals.

P:Yes I only take photos when other people are not there.  Anyway, I am given this diagnosis, with a very low risk factor, a 0.3 percent additional risk of dying every year. It’s cumulative and it wasn’t deemed to be enough to do anything about so they told me I just had to go back for regular check-ups. This is my first trip back to cardiac outpatients for a check-up. There was no one else there.  Just me, in an empty room, waiting. The receptionist is hiding behind his screen.

L:He could equally be in a post office or hotel.

P:Exactly. The more you go to hospital the more you become an expert in what’s going to happen. The various departments you have to navigate around.  The first time I am wondering, ‘What’s going on? Why aren’t people here to meet me! Don’t they know?’

L:Why did you take all these pictures? Is it about recording your experience of being a patient?

P:I felt there was something momentous about it all. You get to middle age and things start breaking. It felt like I was going through a right of passage into old age and decay.

L:So is it about making a record of that time? The photograph as a witness to a period of your life.

P:This is not a place that most people see. All these little departments in a hospital are all compartmentalized.  You only go to the area that is relevant to what is wrong with you. Most of it is unseen. It felt important to make it seen. And all the time you don’t want to be there, and you are there. It is serious and terrifying.

L:So the photos help mark or monumentalise the experience?

P:Yes a memento, like a holiday snap. I would have forgotten about that particular episode of waiting if I hadn’t taken the photo.

***

P:There was one procedure where they stuck an electrode in my thigh and manipulated it all the way up through my veins and into my heart. I felt it moving through my body.

L:They did this with a camera?

P:There is a little x-ray machine, with two heads. I was lying close to the screen but I couldn’t see it as I was flat on my back. They gave my heart various currents to see how it would react. They did eventually stop my heart. I was talking away and I suddenly found myself waking up. I was very cold.

L:So your heart stopped. Technically, you died?

P:Yes I have died several times. It was also after this I started shaving my chest. They had shaved where they put the defibrillator pads on and left the rest.  This is a picture of me with a 24-hour heart monitor.

L:It seems to be a picture about the impossibility of taking a self-portrait when you have twelve electric wires on your body. So much stretching and twisting.

P:I am lifting my arm up to stretch my scar from my operation when I was younger. It’s vanity. I’ve had this scar since I was three years old. There have been issues all the way through my life as a result of that, as a result of medical intervention.

P:Now I have my own personal defibrillator. A shock box. It constantly monitors my heart and if it suddenly has an arrhythmia it charges itself and deliver a shock to try and get my heart back on track. There’s a 12 second delay while it charges. I’d be unconscious on the floor.  I also have a monitoring device at home. Once a week the box wirelessly communicates with the ICD and sends information off to the company.

L:So you are generating data?  Where are the controls? No one can start programming you? I am just thinking about your concerns with privacy.

P: Ha.  I’ve been assured it cant be re-programmed. After the operation you go down to Cardiac Pacing, they put a collar round you, some kind of communications device, and programme it. It means they can set the box remotely. This is out of my control. I’ve been sold the story that it’s going to save my life so I accept it.  There is an awful lot of trust in the patient-doctor relationship. If this thing ever goes off in my life I’ll say, ‘Yes this was worth it.’ It only needs to happen once.   I’m not allowed to travel anywhere where there’s no representative of the company that manufacturers the machine, Boston  Scientific. India is fine, Iran is fine, bits of Africa are fine, South America no.

L:That’s one advantage of global companies.  What does it feel like?

P:Like I’ve got something under my arm.  Something in my pocket.

L:A pocket? That’s like something on the outside?

P:Yes, it’s in me but it’s not part of me. I can feel it move when I move my arm. I am constantly aware of it.  Everything that has gone wrong with me has been on the left side. I lost my left kidney when I had cancer. It was my left elbow. I am left-handed and the left side is breaking.

***

P: There was something about this particular trip to hospital that made me decided to document the whole trip. Getting off the tube, getting ready to cross the road. It’s a record of almost complete inconsequentiality.

L:It’s also a condition of almost complete invisibility.  The photographs record the significant in the ordinary?

P:Yes…all these people going about their normal lives.

L:It’s also mark of photography’s limited ability as a record of feeling. We get very little of the sentiment that made you take these images by looking at them.

P:Nothing. Zero. The photos fail on so many levels yet I still take them.

L:It seems unlikely you would have recalled all this if you hadn’t taken the photos.

P:When you are vulnerable, taking photos makes you sensitive to everything around you. In a hospital, there are very few people who want to be there. And then there’s the utter boredom of the wait. You can’t read anything properly as you can’t concentrate. You are just waiting for your name. At one point I was attempting to read Homo Sacer, the Sacred Man.* This is a concept from Roman times. It’s a person who has committed a certain crime and is deemed a non-citizen, outside the law. You could kill a Homo Sacer without punishment. This is effectively what Hitler did against the Jews, made them non-people so that he could argue it wasn’t a crime to kill them. It’s the same in Guantanamo Bay.  It’s all about power and the law. I was thinking about what large corporations do with personal information.  The data they can gather about you is so great that it can uniquely identify you.  They can do what they want with it.  Buy it, sell it. I think these corporations, like Google and Apple, are like Homo Sacer, outside the law. It was really vexing me at the time.  They have become like countries or governments in their own right. They chose if they pay tax, where they pay tax. They have income that exceeds most African countries.  So I was sitting there reading, or trying to….

For the last ten minutes of this conversation I have been trying to open the x-ray file so we can look at the image of the debrillator in Phil’s chest, and image which he has never seen. I can’t open it with the software and in the end I have to give up.

L:When you are taking these pictures in hospital is it with all these concerns about privacy and power in mind?

P:Yes. A waiting room is private, but it’s public too. If it really was private we’d all be sat in little booths.  But people are coming and going and discussing various things about treatment and tests. There is a breakdown of some privacy. There is also a bit of group camaraderie, we all have related conditions, and are having similar tests.

L:So it seems like there is an implicit agreement or consensus that there are limits to privacy or consent. For example they call out your name.

P:Why not give us numbers? No 5 it’s your turn. The public discussion of symptoms and other things is permitted, but somehow the image is not allowed, the image crosses that boundary.

L:But images identify people and can be shared and distributed…

P:Of course I’m happy not to photograph people.  That’s why it’s just a picture of my foot.  It might be boring to other people but I know why I took it like that.

L:It’s an ordinary picture, but it tells the story of the conditions in which it was taken. There is so much going on that you are compelled to exclude.

P:I was also feeling quite isolated. Although these people are having similar journeys, it’s not my journey. I care about them on the level of humanity but on another level I don’t care.

L:Perhaps that division is helpful. Can you care about everyone you don’t know when you are feeling vulnerable?

P:I like the sign. Cardiac investigations.  Has he got a heart? When I had the initial ECG I asked to have a copy and they gave it to me. Later I asked again and the nurse told me I couldn’t have it. I didn’t argue but I thought she was wrong. Like the NHS of 20 years ago when patients couldn’t see their own records.  There was one time I had the ECG results in my hand and I was waiting to see the cardiologist. I didn’t know what it meant but I put it on the floor and photographed it. I didn’t know at that point that it was bad news.

L:So you’re holding your diagnosis but it’s meaningless to you.

P:I’d had a lot of ECGs. I didn’t know at the point that this one was particularly significant, life changing.

L:A fascinating mystery. It’s like everything else you’ve been describing, how the monumental is within the completely ordinary.

P:I had just been told that I was seriously ill and I walked home and everything was grey and I was in a daze and I saw these flowers and I saw it as a ray of hope, probably me being romantic.

L:It’s the only picture you’ve taken like that.

P:I also made some photograms of ice. Ice felt like a good metaphor for the body.  Water as the flow of life, and ice as a solid form of life. Ice is hard yet fragile, full of fissures, fractures and imperfections like the human body.

L:And transient too like the human body. They look like x-rays. But is it still about you? About being ill?

P:It’s the duality between the internal and external, the physical and the emotional.

Two weeks later we meet again and finally look at the x-ray.

 

P: This is the post-op x-ray. Oh that’s interesting, look how the lead curves around, I always imagined that it would be straight. But that might also be because we are looking at a two-dimensional representation of a three-dimensional body.

L:Is this your heart?

P: I don’t know.  It seems too low down but it is definitely some kind of mass. Is it my stomach? That must be my liver.

L:What is it like to see it?

P: It’s confusing, and although I know that’s me and I know its in my chest, it doesn’t feel like me. I feel completely divorced from that image. I know this exists, I know it’s there, I can feel it, I can’t forget it. I’ve been through the pain. But I suppose I am more interested in the grey areas. I am trying to discover something about myself that I don’t know. It’s a hidden world that you are suddenly being granted access to. It’s not a shock exactly, infact it’s confirming.

L: It surprises me how big the box is. It seems to be half the length of your lungs.

P: You are looking into yourself and that’s an unusual thing. And I am thinking, ‘Is there something wrong me with?’ Something they are not telling me? It’s a serious diagnostic tool. Is there evidence of something I don’t know about? This image is purely to check the box has been put in correctly. It might show something else that no one has looked for. That’s there, but unseen.

L:I think that’s a normal anxiety.

P:Status: final. Patient class: U. What does that mean?! U for useless.

L: The box almost looks organic, like a pebble.  I thought it was going to look more like a machine. You can see the mechanics in the device, the inside of the inside.

P:It’s not part of my central nervous system. You learn to live with it. I am more at peace with it now than when it first went in. At first it felt like a foreign body, like a splinter I wanted to take out. Something alien. It feels surplus and it’s a considerable inconvenience. A big lump of metal in my chest.  The need hasn’t yet been proven, it might never be used.

L:  There is an element of me that feels like I am being a bit of a voyeur, that I am looking at something I shouldn’t be.

P:I have a strange attitude towards all this. I was so ill when I was three and I got used to a feeling complete loss of self-determination, having these doctors and nurses prod and peer into me, cut me open, because I grew up with it I have become accepting of it.  This is just another thing. It doesn’t feel intrusive. And I do think a lot about privacy. This image doesn’t relate to you in anyway so perhaps there is a voyeuristic element, but I don’t feel at all invaded by it.  It’s just an x-ray. If you peeled the skin off anybody they’d probably look similar.  It doesn’t seem to be me in particular. I think we associate ourselves with the surface.

L:It’s both personal and impersonal?

P:It’s just a representation.

* Homer Sacer: Sovereign Power and Bare Life is a book by Giorgio Agamben that looks again at the Roman Homo Sacer figure, and discusses relationship of law and power in general.