Hansen's Children Read online

  ‘AIDS primarily affects intravenous drug-users, haemophiliacs and homosexuals’, Ingemar Zoltán read out, while the others nodded with an air of importance and exchanged whispers in which, not surprisingly, the names Cion and Mstislaw were heard. With this new knowledge, attitudes to the two lovers changed considerably. The nature of the new disease was misunderstood and homosexual acts per se were seen as spawning the new evil. Mstislaw and Cion were shunned... like lepers. It was kind of understandable.

  Those who are not familiar with the subtle moods of the deformed leprous body and mind will find it hard to understand lepers’ seemingly irrational behaviour. These are often rooted in motivations foreign to those of you from that other world – the world of non-lepers. It was the same mechanism that caused the excommunication of Cion and Mstislaw, but this was obscured by the commotion about ‘the new disease’ and its alleged apostles: the homosexuals.

  Over the years the reality of leprosy gave rise to the rule that emotions were impossible and forbidden in the leprosarium: we were all one body that lived the disease, slept the disease, and died of it. This practical arrangement, if I may be so bold, could be considered part of the natural equilibrium that aims to preserve the fragile physical and mental health of the human race.

  Degeneration of the penis did away with reproductive instincts and the possibility of pregnancies within the community of lepers.

  In the leprosarium, together with eleven men, there was almost one woman. I phrase it in that way because the only woman, the elderly Russian Margareta Yosipovich, vegetated in a state of semi-hibernation from as early as I can remember. She did not leave her room for years on end, but Death did not yet want to call for her. I was the only one who visited; knocking on her door once a week, I waited patiently for her vocal chords to utter a barely audible mumble, before I would go in to take her pulse and spoon some soup into her mouth. Margareta would reply with stories, memories that went back to the last days of tsarist Russia and the cruel gulags of the Siberian tundra, but also to the early history of the leprosarium shortly after it was founded.

  Her rasping voice came from deep inside, its low frequencies filling the room. After ten minutes I felt it was coming from all around. She spoke fluently and in a steady tone reminiscent of an old gramophone record.

  Her Russian sometimes drove me crazy. She would speak about the tsarist period using an assortment of archaic terms and exotic adjectives, which completely undermined my high-school Russian. When she spoke of Red Russia it was like a parade of presumptuous names of different committees and titles of minor Stalinist officials. It was thanks to them, if I got it right, that she and her husband froze their butts off in Siberia for years on end. And it was there, in Gulag 32-A, that Margareta contracted Hansen’s bacillus in return for her labours. Broken by the heavy burden of leprosy, this courageous woman managed to stay healthy in mind up until the very end. Margareta had abandoned her body, consciously discharging it and hoping for the compassion of her fellow lepers. She had spent the last ten years afloat on a black sea of memories, constantly complaining of the cold, the Siberian cold, that dwelt evermore in her skull.

  My torment, and that of the others, began at daybreak. A line of blue workers’ aprons filed off to work, and you were faced with a day full of pain of varying intensity. Your communication with the rest of the world usually began with looking to see if there were any new changes to your body. Depending on what you saw, your resulting mood would range from suicidal depression to mild happiness.

  The mirrors in the rooms of the leprosarium saw scenes that could have been from hell. Every room had a mirror, and from the early morning hours you could hear expletives or howls of pain; proof that Hansen had been busy during the night. Fear drove many to imagine that the lump on their back had grown overnight, that part of their nose had been pushed to the left, or that the skin on the back of their hand had become unnaturally rough. Just imagine what the disease was doing to the back of our eyes: a common headache led to all sorts of thoughts!

  So it was that Mycobacterium leprae sculpted away at us, not only bodily but also mentally, sometimes deforming our state of mind in a similar way to the gaping wounds on lepers’ backs and shoulders. You could not expect these circumstances to be conducive to the human race’s characteristic kindness and optimism, but these traits undeniably existed in the leprosarium too. Perhaps physical ugliness made it easier for that other, more deeply ingrained side of human nature to come out.

  I had no cause at all to complain about my room-mate, Robert W. Duncan. He maintained his cheerful nature despite the disease, ignoring its traps and pitfalls. He was also fortunate that the illness progressed very slowly and only drew attention to itself, directed by some inscrutable biological or divine clock, when he thought he was perhaps cured of it.

  Robert made my years spent at the leprosarium seem shorter. He never forgot my birthday and he always gave me presents perfectly tailored to my tastes and needs. The most precious of them, the Jugoton pressing of the Beatles’ White Album, will stay ingrained in my memory forever as the sound of kindness and undiminished friendship. I remember old Ingemar Zoltán listening to ‘Back in the USSR’ beside the speaker and whooping with joy because he believed it was a propaganda piece, a march conveying an ultimatum to the Soviet tanks in the streets of Budapest. Every day he marched up and down the corridors wanting more, joyfully shouting out a hybridised refrain full of anti-Soviet slogans.

  Robert’s presents had a mysterious aura of depth and intimacy about them. I would turn them fondly in my hands and had the strange feeling that I had owned them long ago and they had now returned to me, bringing back old memories too. A deck of old Piatnik playing cards, a pocket knife with a rosewood handle, a small ebony-framed Chinese watercolour, a Turkish pipe: each of these gifts had its own special place on my bedside table.

  Yet Robert stubbornly refused to say how he came by them, and after badgering him a few times I gave up. It was probably some special ability of his, like a literary or musical talent. Several days before my birthday I followed his movements closely, but Robert was never out of my sight for more than half an hour; not long enough to go to the nearest village or the fertiliser factory. Sometimes he would be walking in the courtyard and cast enigmatic smiles up at me, knowing that I was bursting to ask him one more time: how?

  The present he gave me for my forty-second birthday on April 2nd 1989 was kept not on my bedside table but deep inside the woollen filling of the mattress. Robert put it next to the alarm clock so I would see it when the Russian rocket rang hysterically, and when I saw it, my head rang with excitement too. It was a shock that turned the peaceful spring days into a torrent of doubts, assumptions and hopes. What was more, the huge portrait of Nicolae Ceauşescu, which for years had beamed down from the factory administration building opposite, had been smeared beyond recognition with tar.

  I shuffled the cards and looked towards the mountains in the west. Beyond the rim of the Transylvanian Alps lay Europe, sinking into another night. I felt it humming like a huge queen bee sending out series of encoded signals. When Robert stole up behind me and tapped me on the shoulder, the cards flew up from my frightened hands and out the window. They fell slowly, it seemed, much too slowly, gliding through the thick spring air. I knew something was about to change.

  Robert laughed at my jittery hands. He calmly opened two tins of pineapple rings, one for each of us, and I felt as if he was opening two Pandora’s boxes. The next morning you could have seen me walking down the stairs carefully carrying a tin full of water to fetch flowers, those splendid daffodils along the southern wall of the leprosarium.

  But that was not the only reason I got up before the others on 16 April 1989.

  CHAPTER TWO

  It hurt when I swallowed the pineapple, but Robert said that was just a passing phase, after which my oesophagus would become totally numb. That is why lepers in the past often became performers who swallowed live coals or ate glas
s for money. He said I would get used to it over time, though I would miss the pleasant burning sensation of hot tea. What he missed most of all was the heart-warming burn of the Jim Beam Black he so adored. Robert was American. The only American on the planet infected with this ancient disease, I imagined. He wrote to a few friends and some old aunt in Georgia that he had AIDS and would be spending the rest of his life on the Old Continent. He wanted them to remember him as he had been, as a non-commissioned officer of the US Army, not an enfeebled shadow of his former self. He told me he had picked up leprosy in the brothels of Amsterdam in 1982 and then quickly went on to tell me episodes of his training in Arizona. I did not ask him any more questions, constrained by my good manners, though I knew that none of Hansen’s children can explain how they contracted the disease in just one sentence. Their account is extensive and always precisely structured. Lepers talk nineteen to the dozen, at least at a superficial level, whenever they are asked how they arrived at their fate. Robert only told me the whole truth, encouraged by our friendship, after I had been at the leprosarium for many years.

  The daffodils were always an unpleasant reminder of the topic of beauty and its reflection. I would not have been surprised if those magnificent flowers suddenly wilted at the sight of my disfigured face. Although I am not missing any vital parts, my nose, cheeks and forehead are covered with large warts, as if peas were growing under the skin. Leontiasis developed, with the result that my eyebrows, eyelashes, hair and beard growth have long since disappeared. But the cartilage of my nose is still in fairly good condition, thanks to regular doses of Thiosemicarbazone and antimony, drugs which were once delivered in abundance. You could do your injections whenever you wanted: before lunch, after breakfast, at dawn or in the middle of the night. The majority of residents adopted a loose regimen like this, not knowing what a double-edged sword it was. Mycobacterium Leprae soon became immune to the medicines so that mammoth doses were needed to stop the progress of the bacillus even for only a short time. With Robert’s help, I worked out exactly the right doses of medication to knock out Hansen in the long term. In 1984, the last ampoules of the precious substances ran out. We then switched to therapies with medicinal herbs which we were able to gather in the vicinity of the leprosarium. Several Russian books on herbal medicine helped us quickly work out the most effective infusions for reducing the swelling and painful lumps. Compresses of wild pansy leaves soothed the unbearable itch which came on rainy days and sometimes drove the lepers to claw their already disfigured bodies, producing volcanoes of pus and blood.

  Thirty grams of peeled and chopped bittersweet nightshade steeped in a litre of boiling water gave an inconceivably bitter infusion which was good for relieving symptoms in the throat and oesophagus. We gathered the bark of young elm trees all year round in the nearby forest. This was the only plant mentioned in the recipes for alleviating the consequences and symptoms of leprosy, which made it the most popular with the patients. We peeled bark off the stems of two-year-old elms, dried it in an airy place or in the sun, and chopped it up finely. Then we boiled thirteen hundred grams in twenty litres of water until half the liquid had evaporated. Every morning we needed to drink two hundred and fifty millilitres as tea and use the same amount for compresses. We made the infusion in two large cauldrons in the middle of the courtyard and sat around the fire. Old Zoltán had some culinary experience, and his skill in preparing the bark made the work a smooth operation. We would put the speaker on the windowsill and stock the fire well, everyone would bring out a stool or drag up a block of wood, and the fun began. Night after night the White Album revolved, making feet tap in spite of stiff knees. The lepers’ dull eyes followed the sparks as they flew up to the heavens.

  Robert sometimes took a piece of wood as a microphone and pretended to be performing the magnificent Happiness is a Warm Gun. He enticed sentimental smiles, which our disfigured faces transformed into grotesque portraits of our grief. When our conversation became louder, the music was turned down. Rasping voices would come from under the linen hoods; stories were told of past lives: the vitae of wretches who like witch doctors conjured up lost images and words from the dark limbos of time. No one ever questioned what was said. You could tell your story undisturbed by comments and doubts because everyone knew they would be in a similar situation too.

  Whether these biographies were true was not ascertainable. When you arrived at the leprosarium, all documents, personal belongings and clothes were rudely taken off you, and in return you were given a few items of underwear, two white shirts, an army jumper and a quality linen robe with a large hood. New clothes were supplied at regular intervals, so no one could complain about poor hygiene. While three overly amiable doctors accompanied by a Romanian army soldier prepared me for my stay at the leprosarium, I expected they would hang a bell around my neck; an essential accessory of lepers in earlier centuries which warned travellers that one of those deprived of the love of God, was coming along the road. Fortunately that did not happen, but there was something frighteningly decisive about their well-coordinated procedure. I realised that I was not being sent for treatment but being prepared for a different journey to somewhere outside the rules of this world, which could more appropriately be termed ‘illness in isolation’ than a medical treatment. I wanted to keep my watch, passport and little golden Sagittarius pendant. When I raised this possibility, one of the doctors replied with a gentle sneer, saying that the things would be safer if they were looked after until my treatment was over.

  At the same time one of his colleagues threw them into a large metal container while the other, with a mask on his face, rained a white powder over them. Two large needles sank into my thigh, releasing a strong antidepressant and my first dose of Thiosemicarbazone. The doctor dialled zero on the black disk and whispered into the receiver: ‘He’s ready’, then they bundled me into a dilapidated ambulance. I tried to speak, but the injection had silenced my words into gentle arm movements and a wrinkling of my forehead. My tongue rolled lamely in my mouth, making saliva run in strands down my chin and straight on to the floor. I leaned my face against the glass of the back door which had fine wire running through it. The small first-aid station on the outskirts of Bucharest would soon become blurred into a white and red blot on the wall. A man who had not been around during the examination appeared out in front and leant against the wall, waving casually as we left. Wide-lapelled black clothing, a dishevelled jacket, a narrow, neatly shaven moustache above neat rows of teeth: it was this person, whom I later came to know as Mr. Smooth, who had heard the doctor’s ‘ready’ several minutes earlier and with satisfaction lit his cigarette. It hung in his left hand as we left.

  As the ambulance rattled along the pockmarked roads on the way to the leprosarium, I sat on the wooden bench at the side, my back against the metal. The wire glass the size of a television screen displayed a pale sfumato of a winter landscape without snow. The villagers in their muddy fields rested their hands on the handles of their tools and watched the ambulance go past. An unnaturally ugly child ran up to the road and threw a stone that clanged against the metal. The driver stopped for a moment and threw back several Romanian swear words. We continued and turned right, into a forest of birch trees and I was lulled to sleep by the monotony of their white trunks bent by the northern wind. As Robert later told me, Mr. Smooth was an officer of the infamous Securitate who had recently been put in charge of all the lepers in the country. He saw to it that they reached their designated destination and, equally important, that they stay there.

  The procedure for dealing with leprosy had not changed significantly throughout the several millennia of its known existence. Two simple conditions had to be fulfilled to prevent a drastic spread of the disease: Firstly, lepers’ freedom of movement had to be severely restricted; secondly, they had to be prevented from coming into contact with the healthy. It was the same under Ramses II, Charles V or Ivan the Terrible. In the Middle Ages, lepers sometimes made the acquaintance of the
stake. Just tell common people about the ungodliness of the contagion and its carriers.

  Since the church was not bound by compassion, lepers were forced to establish communities on the peripheries of settlements, seeking their salvation in refuse, medicinal herbs and sour wild fruits. With time, these colonies would become restless and hordes of lepers would plunder nearby villages and rob people travelling to the city. This state of affairs would last several weeks or months depending on the resolve of the city dignitaries to saddle the guard’s horses, light torches and go on a small crusade against the sons and daughters of the devil.

  The events in Sensotregiore, a city of eight thousand souls one hundred kilometres from Florence, contributed significantly to changing the relationship towards lepers in the sixteenth century. A colony of lepers located just a stone’s throw from the city walls had been established in the late fifteenth century at the time of Pope Innocent VIII. The mild and above all dry climate made the area popular with the lepers of southern Europe, and it was not unusual for lepers to arrive from distant parts of Scandinavia, Spain or the British isles. A good supply of herbs, abandoned military stables and a network of roads which allowed gangs of lepers to extort money and food helped the colony grow to a population of two or three thousand by the beginning of the sixteenth century. When a group of colonists brutally raped three under-aged girls (tales speak of them being butchered and eaten at the bacchanalias held that same evening) the city fathers, with the pope’s blessing, gathered two hundred heavily armed mercenaries: a force intended to expel this perverted rabble and exact bloody punishment. A battle ensued, and blood-curdling cries were heard until the early hours.