Our first interview took place at a coffee house near the hospital. Incidentally or not, on this very day, Omer experienced a fully fledged epileptic seizure. This was his first after two years of remission, his first since starting chemotherapy. As we began talking, nothing seemed unusual about Omer, but about ten minutes into the interview he hastily left the table ‘to freshen up’. As far as I could gather, he was emotionally weary at having to recall his experiences. Soon I discovered he had collapsed. Lying on the floor near the staircases, he regained consciousness surrounded by strangers. He called out my name and described me to a passer-by. The latter reached the coffee house and, almost out of breath, told me that one ‘Omer Katz’‘was not feeling well’. Led to the staircases, I made my way through the small inquisitive crowd and approached him in a familiar tone. This moment of intense – and instant – intimacy soon led to a close friendship.
I inevitably found myself helping Omer to the emergency room – the access to which seemed facilitated by the fact that I was wearing (at Tamir’s demand) a white gown. I was led through the back door and no questions were asked. There, we spent the following seven hours together, some in an interview mode, with my recorder lying on the bed between us, as if separating researcher from subject; some engaged in casual conversation, the recorder placed back in my pocket. At one point I was casually asked by the orthopaedist to hold Omer’s arm while she forcefully relocated his shoulder into place; at another, Omer asked me to hold his hand as he laid still. When his family finally arrived, I left. It was as if my shift was over and now theirs began. Yet it all seemed natural, as if finally setting things straight: I was an intimate.
Know it all
The seizure was a clear sign of relapse. As a ‘member of the staff’, I saw the magnetic resonance image (MRI) before Omer did. There was little need for professional deciphering: the tumour had grown considerably; a fact that was enough to explain the seizure. As to my question on this specific episode and its timing, the physicians all ruled out any causal relation between the seizure and Omer’s emotional tension at the time. In other words, the subjective was non grata in this loop of causation: it was the tumour ‘having its will when it had its will’ (as one of the physicians told me). Omer, however, saw his state of mind as a valid, and in this case, dominant, aetiological source: he, as a feeling, experiencing person was at least as consequential in causing the seizure as this ‘lump of cells inhabiting [his] skull’. I myself remained indecisive on the subject.
There was little doubt Omer’s condition was deteriorating physically. As a behind-the-scenes backstage observer I was well aware of that. However, I had to wait for him to find out this unfortunate development as any other patient would: I was not medically qualified to divulge the results and was reluctant to present myself as more informed than Omer himself. For me to convey the results would not only mean a breach of ethics, nor a mere methodological bind. It would have also meant a collapse of the two spheres within which I operated: the professional, biomedical (and thus objectivity-oriented) and the personal, experience-focused (thus perhaps more subjectivity-inclined). At another level, it was the clinical (his seizure) and pathological (the MRI) events that ‘spoke’ of the disease, when Omer still did not (as he was unaware, at least consciously, of his condition). The disjunction became evermore clear: Omer was both a talking organism, sending cues in the forms of signs and symptoms, and an embodied subject, eventually mediating the knowledge of his disease via his conscious self. This double – and very much dualistic – perspective became omnipresent in all exchanges related to him: Omer was both person and patient, subject and body.
As the months went by, more aggressive treatment became unavoidable. Omer went through radiotherapy; he lost his hair patch by patch; he experienced increasing difficulties in communicating properly, focusing his sight and recalling phone numbers; his seizures grew both in intensity and frequency, at this point up to five times a day. Towards the end of the year, he had almost completely lost sensory and motor function on his right side. The Hospital-West team gave up on treatment. Palliative care was all that remained.
The team at Hospital-East, however, were willing to perform one additional surgical intervention to allow the chemotherapy to be more effective. The surgery was to take place a month later. Omer was amused when I first asked him whether I could join in the operation. He dared me to go through this and report on ‘what [he] looks like inside’. Would knowing what his brain looked like add anything to his understanding of himself, or to my understanding of him? Would he have had the same request, had another organ been the target of surgery? On the latter, he responded; ‘it wouldn’t have been that cool.’
The difficulties I had in positioning myself in relation to Omer found their epitome during the day of the operation: all seemed to be encapsulated in those hours before, during, and right after Omer’s brain surgery. The morning of the surgery, the pressure Omer’s swollen brain applied on the inner walls of his skull was so severe that he had to keep his eyes shut in agony. The increasing doses of steroids puffed up his face and his 6 foot 3 inch frame gave him the appearance of a giant hamster. I looked curiously, a little detached, at this grotesque figure being wheeled to the OR, his hands nervously patting his skull. On the top of his head were scattered a few bits of fluffy hair and huge bold blemishes. A bulging bump of fatty tissue stood at the centre of a long purplish scar – both remainders of his first surgery, performed seven years before. Throughout, I had to remember to hold Omer’s left hand rather than his right, where he was completely insensitive to touch – I could not subjectively affect the right side of his body which lay there, blind and numb. Yet, from the other side of the bed, to his left, I could press my fingers into his: both of our sensory neurons shooting information up to our brains – the ultimate I–Thou relationship, perhaps. Can we objectify only one side of a person’s body?
In these moments, the clinical details of his case seemed to evade my mind. With him I was at times detached, at others immersed in his experience. He looked at me and, from time to time, made a slight attempt to smile, but raising his heavy eyelids seemed extremely painful. Not able to make genuine eye contact with him, I kept asking myself who this body was, and whether it was at all somebody’s.
I followed the wheeled bed down the elevator together with his parents and sister. Awakening us all from our daydreams, the nurse abruptly halted in front of the surgical area, firmly instructing us not to cross this half-imaginary boundary: we had to say our goodbyes now, here. The family kissed Omer, and asked me, in tears, to take care of him. As I was about to cross into the biomedical realm it seemed they were reminding me he was a dear person rather than a patient.
Passing through an invisible doorway into a brightly lighted corridor, I followed the nurse to the intensive care unit (ICU) where patients were kept and monitored right before and after surgery. Omer’s bed was positioned between two other patients and dozens of high-tech medical appliances. I quietly arranged his pillow – this familiar but futile gesture of concern. Shortly after Omer had signed the consent forms (which he could not read at this point) the surgeon arrived, wearing his scrubs and announced that Omer would shortly be brought to surgery. A nurse showed me to the changing area and handed me carefully bagged sterile uniforms. With the blue nylon pants and shirt in my hands, the nurse found me embarrassed: was I to wear the uniform on top of my current clothes? Perhaps a sign of my position vis-à-vis the field, I was told to take off my daily clothes and wear the uniform on my bare skin. Entering the liminal space of the changing room dressed as a lay person, I remained there virtually naked for a few moments, my identity neither here nor there – I was, after all quite comfortable with both roles, having spent months wearing a white coat. I then wore the uniform, now I wore my uniform. I could feel it on my skin as I unwittingly adopted a slightly different walk (faster than usual) and handled my body differently (less eye contact and a definitely more upright position).
As I passed through the ICU I was told by one of the surgeons not to forget to put the hair cap and mask on. These were available only very near the entrance to the OR, an even more restricted area, and consisted of the last garment promising me a place in this in-group. My position as an outsider would be concealed behind these clothes: fully camouflaged, I could then identify myself and be identified as a member of the biomedical team. My inquiring gaze was perhaps all that could distinguish me from the staff.
Under the skin
As I was struggling with the hair cap – reminding me how little I really belonged there – Omer’s bed was wheeled up into the OR and prepped for surgery. I found him unconscious, draped from head to toe, his large blue eyes shut with tape, his bloated face concealed, his body scraped clean and sterilised. As the medical apparatus kept invading his once personal space, he gradually sank into the realm of idle objects – both right and left side of the body. Although he was at the centre of attention, Omer became completely absent and it was in his absence that my role shifted from accompanying him to accompanying the surgeons.
At this point the room was relatively free of tension. The staff moved freely around the room, talking and arranging their equipment in relative leisure. As the actual operation began, the room turned silent. I applied myself as I followed the knife going over the long crescent-shaped scar and an inch further down. The skin was pinned to the sides, allowing the opening of a fist-wide cavity at the centre of the wound. I remained standing over the orifice, surprisingly experiencing little awe or disgust. What seemed to take over me was rather an acute sense of curiosity.
The cutting revealed five pieces of bone stapled to form an odd jigsaw puzzle, a remainder of the previous intervention. As the two junior surgeons removed the white eggshell pieces and dropped them into the stainless steel bowl, a clinking sound broke the silence. By now, only a thin layer of tissue kept the majestic organ in. With a single cut, the brain – swollen and eager to break away – herniated and literally broke out into the open air. The staff showed interest in the unusual extent of the phenomenon. For me, it was as if I could now see – with all the power of the visual – why Omer was under so much pain: his brain was literally about to burst out of the orbit of his eyes. I could empathise with his pain before, yet, somehow, this bulging lump of flesh made it more real.
The peak of surgery
As the team was entering deeper into the body and getting closer to the handling of the brain, the ritualistic aspects of surgery became more dominant. For instance, only then did the head surgeon make his appearance. As if waiting for a bride at the altar, everything had been meticulously laid out for him and all eyes reverently arose to him as he made his entrance. Carefully scrubbed, he took a seat on a tall, throne-like chair covered with a sterilised sheet. The junior surgeon also took a sitting position at this time, on a similar chair, albeit at a less central position, beside (rather than directly behind) Omer’s head. At this point, the OR became silent, still and tense. The lights were turned off, except for a beam of pale light illuminating Omer’s skull. The liquid crystal display screens from which the site of the operation was broadcast to the OR audience were turned on. From one of the screens the head surgeon could observe a live MRI picture of Omer’s brain as he inserted his instruments. So could I.
I knew how the brain looked, but imagined Omer’s would look as if it was Omer’s. After all, this was not the anonymous brain you would see in anatomy class: this was the brain with which I had these I–Thou relations and intersubjective exchanges. This was the brain that cried, laughed, told stories. But as a brain without a person to personify it – it was just meat, sick meat. I was deeply disenchanted.
Seeing the brain without seeing the mind, observing its actuality, its fleshiness, one must concede that in the OR, the mind is nowhere to be found. From where I was now standing, I could see the back of Omer’s head, his open skull and his brain, the material, graspable loci of his subjectivity. I felt I was vicariously picking and probing into him while he lay there, unconscious, and I wondered how deep had I really been allowed in.
Hours went by as the surgeons methodically vacuumed tumour tissue and carefully sealed blood vessels and I became increasingly focused on the physical and biological presentation of the tumour. I felt I had developed a relationship with Omer’s brain; a relationship that was in many ways independent of its carrier, Omer the person. After all, in the course of the last 18 months I had had almost as many direct encounters with Omer’s brain as with Omer himself. This was perhaps most striking when the surgeon showed the latest MRI image on the screen: the tumour’s shape and its shades of grey were all too familiar. I heard myself making a remark that would later puzzle me. Impressed by the tumour’s current size, I said I knew it/he ‘Ever since it [or ‘he’] was this little!’, as if I had been speaking of a child. It/he was, after all, a growing, dynamic organism – whether welcomed or not. The team giggled.
Closing up: the last stages
Once the thrust of the surgery over, the head surgeon told the juniors to close him up and left the room. The pieces of bone were placed back and the skin stapled, lights were turned on again and movement became freer. The tension was released, masks were taken off, electronic devices were removed and Omer’s face and body were again visible.
I followed the head surgeon as he went over to talk to Omer’s parents. The despair about the intractability of his condition and ‘the impossible mess the tumour made in his brain’ was reserved to backstage discussions. Not entering into details, he gave a somewhat reassuring impression: Omer had survived and the surgery had bought him some more time. Again, I knew what my informants did not: the surgery was to no avail – this serious and dangerous intervention gave Omer only a few more weeks of palliative care. He awoke with a confused mind and a debilitated body. In many ways, he would remain a lifeless body until his death, yet, unlike in the OR, he would consciously experience every moment of forced passivity.