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On Death and Loneliness

This happened one summer shortly after my fourteenth birthday.

I'd been ill for some months beforehand, my left side had gone partly paralysed, there was an intermittent squint in my right eye and I used to faint at unpredictable intervals. There was never any real warning, my vision would go moiré for a few seconds and I'd fall, out like a light. I often came to with horrendous bruises and without any knowledge of where I'd been.

My mother took me to our GP. Neither of them put their suspicions to me in words, but the next thing I knew my mother had got grey cards for us both and we were off to Vienna for me to be seen by a specialist. Austria in those days was still under occupation by the four powers. Anybody travelling across country therefore had to have a grey card, countersigned by French, English, Russian and American military personnel to be permitted transit. We lived in the American zone, the hospital was in the Russian zone.

The specialist’s name was Professor Hoff, he was a tall, pale man with grey hair and a superficially pleasant manner. I trusted him, at first. He had a huge clinic called Rosenhügel out in the suburbs, where patients were grouped according to diagnosis, not segregated by age or gender as elsewhere.

There were 24 people in my group, all with either suspected brain tumours or behavioural disorders. The building had numerous locks and security systems to keep the world safe from us, but no system to keep us safe from each other. I was very frightened during my entire time there. All the other people in there with me were grown-ups, most of them middle-aged. One woman with a shaved head used to fall down and scream ear-shatteringly for an hour or so several times a day. Nobody went near her except when she was hauled off for more treatment. One of the other patients said she was getting a lot of ECT - and had been steadily getting worse since it started. When she first arrived there these attacks had only been occurring every other month or so. I was afraid they would do this to me too, but luckily they didn't.

At dinner the first evening a man sat beside me and said he'd been put in there because he couldn't stop killing people after the war had ended.

He had brown stumpy teeth and bad breath and placid-looking brown eyes.

The staff were generally hostile and I didn't dare complain to anybody or ask to be moved or anything. This was all new to me, I didn't know the rules, or what my rights were or even whether or not I had any rights. Years later on I tried to talk to my mother about this, but she didn't want to listen. The food was horrible too. Boiled noodles with a few fried breadcrumbs scattered on top, and there was no cutlery to eat it with.

Patients were supposed to supply their own spoons (knives and forks were not allowed) but nobody had told me this. I was hungry, but it was a relief to be taken away from table and away from the man for more tests.

After about a week they decided to move me to the Allgemeines Krankenhaus, the biggest hospital in Vienna with 10,000 patients. More tests, some of them quite unpleasant.. In the intervals I started getting to know some of the less forbidding patients in my section. There was a new guy there who I fancied a lot. He was very thin, almost emaciated, but most of us were at that time, food was scarce. He was also years older than me, 18 at least, but I didn't care about that, he was really gorgeous with lovely blond hair and violet-blue eyes. I never found out his name, but we used to look at each other when our wheelchairs passed in the corridor, and sometimes he smiled at me. We never spoke. His bed was in a cubicle, two down from mine, at the end of the corridor. All the accommodation was the same: cubicles with beds, concrete walls between them but no front wall and no doors, only curtains which were usually left open.

The tests continued, mostly carried out by junior staff. It would have helped a lot if they had told me something about them before starting. I never knew if it would be no more than loud machinery noises, or quite painful, or merely uncomfortable. There were no familiar faces around me, no visits from my mother. I was alone among strangers. knew some of them were dangerous, but not which ones. One evening Professor Hoff showed up and said that he felt an exploratory operation would be a good idea, and he had scheduled me for the next morning with a colleague of his, Herr Primarius Professor Schönbauer. That night they shaved my head.

At 8 am next morning in the operating theatre Professor Schönbauer introduced himself and his colleagues and explained what was going to happen. He apologised for the absence of anaesthetics, and explained the occupying forces had a monopoly on all medication and weren't releasing any supplies for civilian use. He said it was essential I keep totally still during the operation, and to help me do this I would be strapped down onto the operating table and my skull supported in a steel cage, but it was really important not to move within these confines and to keep talking.

He was going to drill holes in my head and, given their location, if anything was going to go wrong I would in fairly rapid succession lose my ability to speak followed by my sight and then my life. So I had to stay alert and keep talking.

He said he could have a mirror set up for me, so I could watch the proceedings if I wanted to. His colleague would help me keep still by sitting with me and being there to talk to.

The straps on the table were very thick leather, about 5 cm wide, and had obviously been used a lot judging by the many lines marked on them by the buckles. One went across my chest and upper arms, another across my thighs, a third over my ankles and a fourth lay loose over the foot of the table. Feeling so close to ultimate terror, fearing to die, I went into a state I can only describe as frozen transcendence, everything in me locked down tight so as not to scream, only my eyes fully alive. 1 watched and saw everything in minutest detail, metal instruments on a tray, a mist of vapour on someone's spectacles, black hair on the backs of the hands holding mine, my own caged and shaven skull in the mirror in front of me.

I talked, in fear and obedience. And to create a distance from these terrible things being done to me TO ME I talked about me as an object, about the operation on me as an objective event happening to the person in the mirror not to me. Not to me. Professor Schönbauer entered into this game with me, and lectured as he operated as if he were teaching a group of medical students.

He rubbed an ice-cube on my head and made the first incision. He had said there are very few nerves in the scalp so I shouldn't feel much, but that was a lie. There was a horrible gristly crunch as the knife went through my scalp and grated down the bone. The incision was quite long, 12 cm or more, and I felt every millimetre. The second cut was worse because in the event the actual pain was so much more intense than I had been able to imagine, and this time I knew exactly what was coming. Then he put in metal spreaders to open the cuts and make enough space for drilling. He said he needed to saw fairly large holes so there'd be room to put in the end of a pump. I asked:

but never heard the answer because he'd started drilling. It was like somebody using a pneumatic hammer on my head. I stopped talking, shut my eyes and clung to the minder's hands. As soon as the drill stopped I looked into the mirror and saw a jet of pink liquid spray out of my head over the surgeon and felt a dull sick urgh inside me as if all my insides had been pulled out. I started to say: but was drowned out by the machine’s hammering churr. This time when the drilling stopped I saw nothing, my eyes were beginning to blur. They pumped some more cerebrospinal fluid out, and then pumped air in, so the brain would show up on X-ray.

Basically all this was just to find out whether or not there was a brain tumour. So they told me.

Schönbauer had an assistant sew up the incisions and put a bandage on after unscrewing the cage and undoing the straps. I asked:

and when he said: I instantly swung my legs over the edge of the table in an effort to get away, in case he changed his mind. He laughed and said: and my minder held me back on the table. I felt panicky and distrustful. Schönbauer said:

I was transferred onto a trolley and a nurse came and wheeled me off to X-ray. Every movement was intensely painful, I didn't even dare cry properly because sobbing would make my head move and increase the agony. There was a long, long wait in a queue outside X- ray, the nurse stood there with me and chatted to a friend of hers nearby. As she talked she absentmindedly rocked my trolley as if it was a pram. The movement was excruciating. I tried to ask her to stop but was unable to regain my voice, so I tried to catch her attention by pushing a hand out from under the blanket and waving. This didn't work either. Desperate to stop it I reached out and grasped something beside me, out of my line of vision, and hoped and hoped I could hold on tight enough to somehow end the torture. Unfortunately I was only beside another trolley, and as I held on with every muscle rigid in spasm it rocked too. And she went on, oblivious, until at last it was my turn to go in, three hours later.

I don't remember the journey back to the ward or the rest of the day, just an endless haze of pain and a sense of slowly receding. Sometimes I was aware of crying or moaning, and some of the time I knew it was me though I still tried not to do that because it hurt a little less when I didn't. Sometimes, though, I knew I wasn't crying and yet I still heard the sound, so when the nurse came back to check on me I asked her about it. She told me the blond lad in the other wheelchair had had the same operation. They did him just after me, plus some others after him.

I asked for my mother but the nurse said she hadn't showed up yet. My thirst was intense and I was allowed half a teaspoonfulof water every hour, so that was a chance to ask questions. There was no point in asking for painkillers.

I think I must have passed out for a while, because my next memory is Professor Hoff standing beside my bed looking annoyed. I hadn't seen him come in, and he looked like he had been there a while. It was dark, 10 pm by the clock on the wall. He touched my hand and said:

I stared at him and said nothing for a long while. I couldn't think of anything to ask for that would be worth having. I had wanted my mother, and asked again for her to come to be with me. I wanted her, but she didn't want to see me. That felt really lonely. Still, I did get a cup of weak tea. It had no lemon or sugar, but the wetness tasted marvellous and I savoured every drop. Then I lay there and thought about dying, and thought even more about all the things I wanted to do and had never done. Nobody, no boy anyway, had ever kissed me or hugged me or anything. That made me think of the boy in the nearby cubicle and I started listening to him.

He was still crying, and groaning every now and then. I couldn’t hear anything or anyone else, the ward seemed quite deserted. At about four in the morning the sounds he was making changed, he made choky rattly noises in his throat at intervals for 20 or 30 minutes and then was silent. They fetched his body at 5.30 and I watched him being wheeled away for the last time. His death shook me in a way the prospect of my own had not. I had no idea why this was so, and still haven't to this day. But I thought of him, thought of the way he had smiled at me in the corridors, and replayed his sounds of pain and loneliness in my mind. We had both been left to die alone and uncomforted, and suddenly I was consumed.with anger. Anger at Professor Hoff for letting it happen, anger at Professor Schönbauer for doing it to me and to that nameless boy and to God only knows how many more, anger with my mother for her callousness, for not being with me when I most needed her, for her uncaring and unloving heart.

And I determined to live, and do every single one of the things I had grieved over missing. Which I did, and have done .... some of them several times over. It was good to survive.

Mum wafted in a week later, with all her excuses armed and ready:

She had always called me ‘Mouse’, and treated me like vermin. Mausi is a common “pet name” for little girls in Austria. Superficially it is a term of endearment, covertly it is a massive put-down. It says daughters are equivalent to mice, possibly cute, especially if made of chocolate-coated marzipan, but essentially dirty when alive, and best got rid of. Only sons have value.

Looking back on that time I can clearly see the relentlessness of Mum's hostility, but in those days I still had hope I could make her love me, just a little bit. And I went on trying to reach her for another ten years before finally realising I could only become whole if I stayed well away, and took care not to see her again.

Two years after the event I had a visit from one of the men in the group, a 42-year old electrician who had had a benign tumour. It had grown to a certain size and had then encapsulated. They offered to take it out for him but he said he'd rather keep it and accept the risk of it someday starting to grow again. He told me he had out of curiosity tracked down all the others in the group. He and I were the only ones still alive.

Not that I survived entirely unscathed. I was still shaking with fear day and night six months later, and though this eased out eventually, twenty years down the line the sound of a pneumatic drill would leave me trembling uncontrollably for some hours. The holes in my head are still there, though they have almost grown shut. They are only about one cm in diameter now. I still get severe pain in my head at times, especially when I am under stress. When this happens I figuratively crawl into a hole and pull it in after me, seeing no-one, talking to no-one, and only emerging when it is all over.

There have been some good things to come out of this, I got some really useful information:

Since then I live my life with utmost intensity, the days are full, not to be wasted. Every day I have had is a bonus which I fought for and have earned. I've probably done more in these years than people would normally do in several lifetimes put together, and I have enjoyed my time to the full. I have no doubt this will continue.

Writing this down has been a sort of exorcism for me. I had never before been able to tell it all in one piece, only in small sections separated by long intervals. As I type this still more memories and more details from around that time emerge, it is like I'm regaining something of myself that had been lost for so long I didn't even know it was missing. And now I am getting it back.

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"On Death and Loneliness" page last updated 5-July-2003