TWO EMPTY CHAIRS

AIDS: CLOSER THAN YOU THINK

 

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Translated by Nancy Forest-Flier

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If you haven’t got HIV yourself and don’t know anyone who does, it’s easy to dismiss AIDS as something far away. The simple fact that for so many people AIDS is something “far away” makes the battle against AIDS that much more difficult, because whatever is far away can easily be forgotten.

            The figures seem to speak for themselves. More than forty million people around the world are living with HIV, the virus that causes AIDS. More than three million people die of AIDS-related diseases annually, and the figures are rising every year. But the figures don’t tell the whole story - the story of women and children who are the hardest hit, the story that more than 90 percent of the people in developing countries who are infected with HIV live without effective medicines, the story of misery, grief, banishment and loneliness.

            Han Nefkens lives with HIV. In his columns about HIV collected in this book he helps the reader understand exactly what this means. He shows us how HIV infects not only his body but also his day-to-day existence, how it sometimes turns his world upside down, but how it also makes him aware of what’s special ... in people and in art. He goes one step further, however: he seeks face-to-face contact with people in developing countries, people for whom no treatment is yet available, for whom HIV is still a death sentence. In establishing that contact he makes the gap between the West and the developing countries painfully tangible. For him, AIDS is not “far away,” neither from his own life nor from the lives of the people he meets there.

            By allowing us to witness the fierce emotions and intimacy of those encounters, he builds a bridge between living with HIV “here” and living with it “there,” and in doing so he brings AIDS a bit closer. At the same time he denounces the gap between rich and poor, always challenging the reader to come up with an answer to the question “How far away is AIDS, anyway?”

 

Peter van Rooijen, director of the AIDS Fund

 

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1. False positive

 

September 24, 1987. Calle Durango, Mexico City.

 

It was a busy day for me. I had to write an article on a leaking nuclear power plant and buy a pot of honey at the health food store on the corner. And I had to pick up the results of a blood test from a private laboratory.

            For months I had had an infection in my throat. I had been to several specialists and had taken several kinds of antibiotics, but my throat was still red and I was still coughing. I was sure it came from the air pollution, that brownish-yellow blanket of smog that hung so heavily over the city.

            A friend of mine, a Dutch homeopath, had casually suggested that I have an HIV test taken. I wanted to know if that was the same as the AIDS test. I had been involved in a steady relationship for several years, so my chances of being infected seemed minimal. Kees, the homeopath, agreed that the chance was small, but you never know. Kees wore sandals, and I had never had much faith in the opinions of people who wore sandals.

            At the laboratory the receptionist handed me an envelope, which I opened when I got out on the street. The report said: anti-cuerpos antigenos HIV- positivo. Did positive mean negative? Did positive mean in a couple of years you’d be dead?

            I stood in the middle of that busy street in Mexico City. Cars raced past me, pedestrians pushed me from behind, daylight began to fade. I decided to go back inside and talk to one of the doctors. After many urgent appeals I was finally able to speak with someone in a white coat. The doctors had all gone home. This was the son of the lab owner, who told me that there was a 10 percent chance that this was a false positive result.

            He advised me to go to the United States and have a test taken with the most modern equipment. That test would be conclusive. When he wrote the name of the test on the paper containing my unreliable results, I wondered if he had spelled it correctly. Was it really a Western Blot test I had to get or a Western Blood test, something meant especially for me and other Westerners?

            Back outside on the street I calculated that if there was a 10 percent chance that the results of this test were incorrect, and you had a 50 percent chance of getting AIDS if you’re HIV positive (as I had recently read in the papers), then I had a 45 percent chance of being dead within two years. Or was it 47.5 percent? I’ve never been very good in math, and I wondered if there was any point in learning now. I held the pot of honey so firmly under my arm that it left a red streak right above the place where the blood had been taken out of me by the same lab ten days before.

            One week later I went to America. The test was indeed the Western Blot, not Blood. And sure enough, my blood was quite infected with HIV. In Houston they told me it was important to have my “T-4s” checked. When repeated tests over a few months showed a steady drop, they put me on AZT. I had to take one pill every four hours, so I bought a pill box at a big shopping center along with an alarm clock that also went off in the middle of the night.

            I’ve tried them all since then, the pills and the cocktails. Thanks to all that ingestion I’ve managed to stabilize my T-4s to keep the virus at an undetectable level.

 

But what if I had been a real Mexican? A Mexican who didn’t have the money to fly to Houston for a Western Blot? A Mexican who didn’t have the money to pay for AZT and DDI and Kaletra and all the combinations ending in -vir? Who received the same results on the same evening and read them there on the street in the dwindling daylight, just like me, quickly tearing them up and trying to forget them because he couldn’t do anything about it anyway. That Mexican - those tens of thousands of Mexicans - are now dead. Is it just lucky that I have Western Blood, and Western money? It that it – a matter of luck?

            Did I luck out?

 

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2. My own medicine

 

“False Positive,” the piece I wrote last week, traveled to Mexico and has just now made its way back. A friend of mine, who lost her brother to AIDS several years ago because there were no medicines in the hospital in Mexico City, wrote that when she read what I had written she broke down and wept.

            “But I also realized how privileged I am that I’m still alive. I realized the enormous responsibility I have to live every minute to the best of my ability. I’ve been given the chance he never had.”

            In those few words she captured just what I meant. She gave me a taste of my own medicine – of our own medicine. It’s something I have in my mouth all the time but seldom taste. I allow myself to sink into the cares of daily life: the socks that have to be washed, the appointment I don’t want to miss, the bedspread that needs to be straightened, the cap on the tube of toothpaste that has to be screwed back on, the turnips that have to be cooked – ordinary life. But ordinary is not ordinary. Ordinary is extraordinary.

            I get treated to a demonstration of how extraordinary the ordinary is three times a day with every dose of medicine I swallow, and all I want to do is forget about it. I’m too busy negotiating the price of a new painting, applying my moisturizing cream, re-organizing my wardrobe to make room for more striped shirts. I worry whether my new shoes will look good with the jacket I bought last week.

            I – who ought to know better – am so busy with ordinary life that I don’t realize how extraordinary that ordinary is.

            I rarely taste my own medicine. Sometimes I run my tongue over my palate, but I tend to swallow it right away. I only really taste my own medicine when it’s so big and overwhelming that I can hardly get it down. Like the e-mail medicine I got from my friend in Mexico.

 

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3. Mercy Centre

 

It’s not difficult to meet people here in Thailand. A friend introduced me to someone who, like me, is a writer. We’ve got even more than that in common, I thought, when I saw that Tew was wearing the same glasses I was. He also has a house near Barcelona so we spoke Spanish together on the way to Mercy Centre, the little hospital where people with HIV are cared for, located in the middle of the Bangkok slum.

            Tew is there every day, so he knows everybody. His movements are as free and relaxed as mine are stiff and awkward at seeing people with whom I have so much in common except for the fact that we were born in different places.

            Most of them are lying in bed and waiting. The image from the past that we struggled to erase from our memories still exists here. On one bed there’s an old man hooked up to an oxygen machine. Coming closer I see that the man isn’t old at all; he’s younger than I am. Tew thinks today will be his last day. He strokes his arm and whispers something in his ear. I look the other way, where I see a young girl with wide-open eyes. She’s beaming, but she can’t see me. The virus has affected her brain and recently she went blind. I brush her hand and she gently squeezes back.

            In another room children are playing. Because their mothers were given medicine when they were pregnant, some of the children have developed a resistance to HIV inhibitors; they often don’t live past the age of twelve. The children who are too weak to go to school watch cartoons on television. I sit with them, give one of the boys some fruit juice and stroke the back of a girl with a rash on her lips. What do you bring for children with HIV? Candy? Ball point pens? Teddy bears? Crixivan?

            An attractive woman walks around with a T-shirt bearing the word “Police” in big letters. In a few weeks she’ll be strong enough to go back to the Super Pussy Club in Patpong to earn some more money for her family. “What can I do?” says Tew. “Tell her she can’t go?”

            I suggest that she take a big bag of condoms with her. But Tew says many clients won’t use them. The girl is young, she looks good and the men are far from home in an exotic country.

            A woman is brought in by her father. She has an open wound on her buttocks and he doesn’t know what to do for her anymore. She’s carrying her belongings in a plastic bag: a blouse, a cup, some photographs. She puts the plastic bag on the bedside table, sits down carefully on the bed and looks around. When her father says goodbye and walks away she waves at him and keeps on waving, even long after he’s disappeared.

            What I really want to do is sit beside her on the bed to keep her company and keep myself from feeling so alone. But I walk on. It’s an instinct; I can’t help it.

            In the next room a critically ill person is being massaged by a volunteer wearing a mask to protect him from TB. My Thai alter ego with the tasteful glasses says hasn’t worn a mask in a long time. He’s not afraid any more. I’ve got a lot to learn from him.

            I smile at the woman on the bed, and she laughs back as Thais always do, a laugh that can mean a thousand things and that we foreigners cannot understand.

            In a month I’ll be back, because despite its dreadful name I belong here in Mercy Centre. We all do.

 

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4. Press release

 

Associated Press - Blantyre, Malawi. A prominent tribal chief from Malawi denied the existence of AIDS on Friday and said that the thousands of people whose deaths have been attributed to the epidemic actually died of a plague sent by God to punish young people for misbehaving. “Contrary to what the government and other people maintain, there is no disease called AIDS in this country,” said Group Village Headman Makunganya to journalists and officials of the Malawi Human Rights Commission. At least 14 percent of the 11 million Malawians have HIV, the virus that can cause AIDS but what Makunganya said is a conspiracy dreamed up by activists to confuse people.

 

For all those years I thought I had a virus in my blood, but I was totally wrong. It’s all in my head. It’s a plague sent by God. A conspiracy dreamed up by activists. That’s certainly put my mind to rest. Now I can throw away all those nauseating pills. I and the one and a half million Malawians can just flush them down the toilet. Except those one and a half million Malawians - not to mention forty million other people - don’t have any pills yet to flush down the toilet.

            Maybe all of us should first make sure that they get those pills so we can flush them down the toilet together. So that together we know there’s nothing wrong, as long as we behave ourselves. If we behave ourselves, no plague or conspiracy will ever bother us again. Then we won’t need any pills. All we’ll need is a clean conscience and a good head on our shoulders.

 

 

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5. Day-night

 

Abruptly awake at five o’clock in the morning, I find the world around me empty and still. It’s been quite some time since I made a deal with myself to stop pretending I’m asleep. I can’t do it anyway, and there’s nothing so embarrassing as a bad imitation.

            The thoughts of an insomniac and the dreams of a sleeper are both the same. You get swept along, and you’re never given the chance to choose between a pleasant dream or a nightmare, a nice idea or an image of horror. The beauty of dreams is the just like horror of nightmares: no matter how hard you run you never make any progress, and like the worst moments in your life you find you have no control over events.

            Every night I wake up with a picture in my head. So I silently slink to the computer in my bare feet and try to work the wet, shapeless clay of that picture into some kind of shape. I knead and push and pull without any attempt at reflection. My lower appetites take over and lead me on, as lower appetites often do at night.

            I’m always surprised with what comes out of that mass. Maybe it’s the urge to surprise myself that wakes me up in the first place. If I already knew where I was going to end up I wouldn’t have to sit down at my computer any more. It has to do with things that are hidden, thoughts that emerge from the clay. With my clay I’m never alone.

            Eventually my night turns into day – a night-day spent sculpting. Sometimes, when the mass refuses to take shape and I don’t have any company, the silence is overpowering.

            At that point my consolation is the buzzing of the internet. Someone comes to keep me company. A friend from California, where it’s late afternoon. An acquaintance in Thailand who’s just had breakfast. Then I’m reminded that most of the world is not asleep, that there are people who are thinking about me, so I’m not alone. I like to be consoled, even if it’s by means of a message lost in the ozone, an unwitting e-mail that, thanks to a virus, has gotten through to my hard disk.

            If the bell doesn’t ring, I look out the window to see if there’s a light on in the apartment on the other side of the patio. It could be a light from someone who’s just come home from a night on the town, or someone working the night shift. Maybe it’s a neighbor who’s fallen asleep in front of his television; maybe he just forgot to turn out the lights.

            If the light’s still on after half an hour it’s proof that a fellow amnesiac is living there. If that’s the case I can watch for hours. The light on the other side of the patio warms my cold feet.

            Only if I see this sign of life do I know that I really exist.

 

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6. Talk about lucky

 

A year and a half ago the lady sitting next to me at a sidewalk café started shaking badly. The little table shook, her chair shook, the ground shook, the city shook, everything shook. It kept on shaking for three months, and when the shaking stopped I found I was someone else.

            I’m not exactly sure what happened during that attack of encephalitis. When I could hear a little of what people were saying again, I discovered I had given them quite a shock without really intending to. Very slowly something began to dawn on me. Something. I don’t let everything dawn on me, because everything is still too much for me.

            I bumped into an acquaintance recently who patted me on the back and said, “Talk about lucky!” He meant lucky I wasn’t dead. He’s right, of course, but I don’t feel lucky. There’s a sadness that still gets in the way, cunningly disguised and hidden. I close my eyes, but it’s still there. Sadness, confusion and anger is what I feel, but not lucky. This shows that there’s really something wrong with me. I’m sad because my life was in danger and the people I loved were worried about me. I’m confused about what’s there now and what I still have to go through. I’m angry that something was almost torn from my hands and then given back, uninvited.

            Uninvited, that’s why I’m angry. Life has a hell of a nerve, death even more. It just does what it likes, it giveth and taketh away, and can’t make up its mind. It was a dictatorship; nobody asked me anything. (Not that I was in any shape to answer questions.)

            Seen from that angle life was very sensible, an enlightened despot. Enlightened yet outrageously domineering, which is quite out of place in this day and age.

            So I should talk about being lucky while I’m stamping my feet with rage. I’m stamping my feet like a little kid. I’m bawling like a toddler in the body of a middle-aged man.

            The sentence talk about lucky is rather long for me, anyway. I still have trouble with long and many. I can talk. About lucky. And about a few other things as well. I really can talk. Again. And that’s lucky.

 

 

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7. Role model

 

I always used to get a little tense before going to the HIV doctor. What if my viral cargo has increased? What if my T-cells have dropped? What if they discover that my current medicines are no longer doing the job? And what if the next medicines don’t do the job either? What if nothing does the job and all hell really breaks loose? This is what I used to think while sitting in the waiting room.

            Ever since all hell did break loose in my brains, and has now returned to a state of relative calm, I’m no longer tense. The thought “what would happen if...” no longer runs through my head. “What if...” is a much too complicated linguistic construction, far more than I can manage right now.

            So I sit in the waiting room and leaf through magazines. I look at the photographs of artists and their swimming pools, and at the glittering jewelry of their ladies.

            I wonder why there are always such old magazines in doctors’ waiting rooms. Are we unworthy of this week’s Hola? Are doctors’ waiting rooms just wastebaskets where their wives can dump their dingy gossip rags? Are we the next in line for this dirty, thumbed-through pulp?

            When I get the results I don’t think, “What if these good results only last three months?” I don’t think, “What if these good results only last three years?” I still can’t think in terms of “what if” constructions.

            When I get the results I’m happy. Just happy. In that respect I’m starting to resemble our dog. I am what I am and nothing else. I’m angry, sad and happy, with every fiber and every muscle of my body. That’s it. No nuances, no qualifications. I’m not up to that yet.

            Who knows? With a bit more practice I may start looking more and more like my role model. I’ve still got to work on the burping and farting, and my snout isn’t flat enough yet, but that’s just a question of practice. Practice makes perfect – becoming the perfect French bulldog.

 

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8. Conceptual art

 

I’m not writing any more. I’ve had it. All I do is repeat myself. I tell the same story over and over again, thousands of times, but not with thousands of variations. Writing is too closely connected to something I’m fiercely opposed to: reading. I can’t be expected to contribute to something I loathe, can I?

            Even if I promise not to read what I write, writing remains a vile occupation. It’s like a non-smoker working in a cigarette factory. And what’s worse, I’m not a non-smoker but an ex-smoker. So this is my last piece. This is my swan song. For today.

            Starting tomorrow I’m going to concentrate on my version of conceptual art: I think of something, other people carry it out and I call it art. Actually it’s not much different than the way my life has gone so far, except now I’m giving it a name. That makes it look like I’m doing something. Doing nothing becomes doing something. And that’s a very attractive idea for a quasi-sluggard like me.

            So for the time being I’m too busy doing nothing to write.

            The first thing I’m going to do is build a wall of anti-HIV pills. I take an anti-HIV pill (an orange pill, because it’s colorful) and put it in a square glass box that measures five by five centimeters. Or I put it in a box measuring ten by ten centimeters. I’ve got to think some more about which of the two sizes I’m not going to use. It can be a Plexiglas box or something transparent.

            I do this nine hundred ninety-nine times. Then I take the thousand minus one boxes and build a wall. A wall to keep out HIV. An anti-retroviral barrier. It’s a project that only we in the rich countries can carry out. They don’t have anti-retroviral pills in the poor countries. It’s not good for them. If the poor countries had anti-retroviral pills there would be too many people there. Of course there are enclaves of rich countries inside those poor countries, where people live in houses surrounded by stone walls topped with barbed wire. But those people won’t want to have anything to do with my conceptual project. That would draw too much attention to the fact that they’re ambassadors of rich countries - they represent us.

            When I consider building such a wall, and realize that most of the people in the world can’t, I get angry. Not sad. Angry. It’s so unnecessary. It’s just a question of organization. All you have to do is give some thought to how you’re going to tackle it so everyone is satisfied, both the makers of the pills and the ingestors, and usually they’re not the same people.

            And that thought is not conceptual art because it’s something that really has to happen. Not tomorrow but today. Now. Doing nothing has to become doing something. This art has to be more than just an idea.

 

 

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9. To be answered

 

Il live in Cambodia and my son got AIDS.

The drugs are really expensive.

Any body knows a wat to get cheap drugs from India or Brazil

Thanks

Nissai

 

Today I received this e-mail from a total stranger. It was buried under the torrent of messages I subscribe to with information about new anti-HIV drugs, side effects, conclusions of congresses and results of studies. It’s from a mother (or is Nissai a man’s name?) who, like so many other powerless people, is forced to watch her child die a slow death. A powerlessness that is exacerbated by her knowledge that somewhere else there are medicines for sale that can prolong her son’s life.

            My first impulse was to drop everything, put together a package of medicines and send it to Nissai. I wanted to do the same thing not long ago for people in Mexico, but the Mexican experts advised against it. Helping just one or a few infected people would be cruel for all the others, they said. It would lead to enormous problems among the infected people themselves. Better to contribute something in a structural way, I was told, to a project that makes sure the medicines really end up with the right people, and that they are taken on time and under the proper conditions to avoid resistance.

            Is it ordinary human concern that makes this message so touching, so that even the minor grammatical and spelling mistakes move me? Or is it recognition? Because I, too, have been forced to watch as someone I loved die before my very eyes (except he didn’t want to take the medicines that were available to him). Or is it survivor’s guilt? I’m saved, they’re lost.

            There’s absolutely no acceptable reason why I should be allowed to prolong my life while tens of millions of others should not. I haven’t done my best any better than they have. I’m not more worthy of life than they are. I was just born in the right place and in a good environment. Unlike those tens of millions of others I’ve had all the luck. Dumb luck.

            So should I spend all my money on a project to make medicines available to people with HIV in the Third World? Is it decadent that I buy works of art by Roni Horn and Joerg Sasse, that I stay in the Oriental Hotel and shop at Prada while people are dying of the same disorder I have? Or should no one, including those who are not infected with the same virus, be allowed to buy more Roni Horns and stay in the Oriental Hotel as long as there are still people needlessly dying on this earth?

            Is this survivor’s guilt? Do I think I should pay a price for the fact that I’m still here? Should I do penance? Or, worse yet, am I secretly making a deal in the back of my head with a higher power: if I give away all my money now to help others you’ve got to let me live, because fair is fair. As if I didn’t know that fair isn’t fair at all in this life, and that there is no higher power to whom we can turn with our petitions and promises, with concealed attempts at bribery.

            Nissai turns to the world in general via the Internet. She turns to me. I store her e-mail in the archive for messages that I don’t know how to respond to but don’t want to erase. No, better yet, I open a special archive for her: Nissai, to be answered.

 

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10. AIDS Memorial Day

 

Generally I don’t think about them very much any more: Jeff, Mario, Julio, Carlos, Pedro, Pascal, Francisco. Victor is the one I think about most. I don’t like to think about the past. I prefer to focus on the future. I’ve got to go on. It’s pointless to reflect on past events - pointless and far too painful.

            That’s why I hate AIDS Memorial Day. It forces me to cast my mind back, while I had gotten so good at forgetting them.

            When the day comes I feel the grief once more at being cut off, the shock that the unthinkable really took place and that no one is safe, no matter how carefully you hide. I feel the anger again because life abandoned them. I feel the almost paralyzing fear that I’ll be next.

            I remember that whenever I went to the cemetery I’d suck the cool outdoor air deep into my lungs and firmly tell myself: you’re still alive, they won’t get you six feet under.

            I try to let go of Jeff, Mario, Julio, Carlos, Pedro, Pascal, Francisco and Victor. I cling to their lives, press them so hard against me that they leave marks in my skin, scars I’m happy to have because I’ve still got time and they don’t.

            Even so, they keep coming back. Always unexpected and certainly uninvited, they occupy a place in my life. Suddenly I hear the deep voice of Jeff, who makes jokes about the other members of the support group he faithfully met with every Thursday night. I say the words again that Mario and I thought up together, our own language that now I must speak alone. I lay my cheek on his belly once more and take in his scent - strong yet sweet, familiar. I look out over the roofs of the city from Julio’s terrace. He serves me a piece of birthday cake with twenty-eight candles, the most there will ever be. I see how the light falls on Carlos’s hair as it curls slightly over the top of his collar, and I can’t resist stroking it just once. Pedro reads to me again from a newspaper article about a new medicine that he’s sure will do him wonders. I hear his mother softly crying as she touches his coffin for the last time. I walk past the place in the city that Pascal had shown me with such pride; he knew every hook and cranny, and now I do, too.

            I embrace Francisco in the twilight. He’s not the one for me, but no one can see you in the semi-darkness so it doesn’t count.

            I saw Victor just last week in the Bijenkorf. I turned around and chased after him, up the down escalator, but he was already gone. I see him in the metro, on an advertising poster near the airport, on a terrace wearing big sunglasses that he thinks he can hide behind, in a home movie from thirty years ago, the two of us fighting for our mother’s lap.

            I hate AIDS Memorial Day. I don’t want to think about the past. I’m focusing on the future. I’ve go to go on.

 

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11. Anonymous Clinic

 

T. had called the hotel, and the head of the bellboys had spoken with the man from the taxi service. We had to go to Snake Farm, he said.

            At first I was afraid it was just another tourist trap where you suddenly find yourself stuck like a rat in a maze. But T. knew what we had come for, and surely she wouldn’t send us to a tourist attraction. We’re farangs, though – foreigners - not Thais, and when it comes to foreigners you can only guess at their idea of fun.

            The taxi crawled through the traffic. We passed a sign that said Anonymous Clinic. Must be something for alcoholics, I thought, people in denial who want to keep their secret from getting out at any price. Fifteen minutes later we were back at the corner where the driver had made his turn, and we stopped at the sign for the Anonymous Clinic. This can’t be true. We, in our gleaming limousine from the Oriental Hotel, are not here to visit this underground, half-camouflaged place known as the Anonymous Clinic. But it was true. The Anonymous Clinic is located in a part of the city called Snake Farm. It’s the clinic where Thais who are HIV positive come for treatment, where they get their medicines and see the doctor. The project is supported by Dutch and Australian physicians, and that’s why I wanted to see it.

            It was a hospital like any other, no different from the countless hospitals I’ve known and visited in all the countries I’ve ever lived in. Except in those countries they don’t call it an Anonymous Clinic. To call something “anonymous” is like putting on five pairs of sunglasses at the same time and wearing a big sticker on your back with the words I AM INCOGNITO, DON’T MIND ME in red letters. If anyone still fails to notice it won’t be long before they do. Why isn’t it just called the Pajurakran Clinic, or the Bangkok Clinic or the Thai Clinic in Thai?

            T. gave us the friendliest of welcomes. She told us that about fifteen hundred people come to the clinic from all over Thailand. Some have spent the entire night in the bus. (And I complain if I have to get up early for an eight o’clock blood test.) T. shows us the medicines the people there are given. They’re exactly the same as the medicines I take, except one. It’s brand new, and we don’t have it yet. It’s reassuring to know that the people in Thailand take the same stuff I do – reassuring for them and for me.

 

Whenever I visit a country for the first time I have this almost compulsive fantasy in which I imagine I’m living in that country for good. So I look for an apartment where I can live, invent a place of work and try to imagine what my daily routine would be like.

            It’s a fantasy that’s easy to indulge in Bangkok. I’ve already found the apartment – it’s in the center of the city – and I’d take the medicine I’m taking now except for the one I don’t have yet, which I’d add. It’s a good thing we’ve already found the apartment because I wouldn’t like living very far from Snake Farm and having to spend the whole night in the bus.

            But if I were a Thai, a real Thai, would my family know that I go to the Anonymous Clinic? Probably not, otherwise the clinic would have been given a real name. If I were a Thai, a real Thai, would people know I’m HIV positive? Probably not, because Thais are like Mexicans – they don’t like disagreeable things. You’ve got to make sure you don’t talk about disagreeable things or you’ll get treated to some disagreeable things yourself. If you try hard enough to keep quiet the disagreeable things go away on their own. But HIV only gets worse the longer you keep quiet about it.

            If I were a Thai, a real Thai, would I keep on imagining what it would be like to live wherever I happened to be, or would my fantasy go no further than what I know? And would that be enough? Would it be more than enough?

 

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12. Monopoly

 

Note paints yellow clouds, purple sky and orange trees in an enormous garden – everything that’s far away from the slums of Bangkok where he grew up. He depicts the world as he’d like to see it – a life without sickness, with an enormous red sun. But Father Joe says the HIV-infected children at Mercy Centre never live past the age of twelve. Their resistance is often broken down by malnutrition and the virus by the time any medicine gets to them.

            Most pills come in adult dosages; these are broken in half and the contents are dissolved in water. But medicines meant for adults don’t always work as well in children. Children are also more troubled by serious side effects, and the pharmaceutical combinations that the Thai government makes available to children with HIV free of charge are not as effective as the top-of-the-line therapies we get in the West.

            Note’s health is precarious. According to Father Joe he has maybe a year to live, two at the most. I wonder if Note can understand English, and I suspect that even if he can’t he knows what we’re talking about. Last week one of his friends died.

            Note conjures up an enormous blue airplane on the canvas, where four blank meters await him. I want Note’s paintings to acquire a prophetic power. I want him to keep on painting, and I promise him a chocolate bar at the end of each week and a Monopoly game when he’s finished. That Monopoly game is what he’s dreaming of: an imitation world where he has a chance of winning.

            Father Joe invites me to stay for lunch. Today there’s a treat in store for Mercy Centre: a rich gentleman has given a party in a chic hotel, and his chauffeur has brought over all the leftover food. One of Father Joe’s assistants carries the big boxes filled with petit fours, roast chicken, potato salad, rice, canapés and a gigantic chocolate cake to the assembly hall where we’re eating. The name of the hotel where I’m staying is printed on the bags. Ratana gives me a piece of omelet; I estimate the party took place at least three days ago. Father Joe tries to guess whether the dish that looks like a classicistic palace is sweet or savory. I recognize it. I had it yesterday in the hotel’s Italian restaurant, but I don’t say anything.

            As I slowly make my way through the cold omelet, I see a boy of about nine help his friend, who can’t walk very well any more, to get to the toilet.

            That very afternoon I decide to buy more chocolate bars at the Western supermarket near my hotel. Forty thousand chocolate bars – a thousand for every child at Mercy Centre. And that’s just for starters. We’ll see how it goes from there.

 

 

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13. Hearty soup

 

For fifteen years the virus was snapping at my heels until it finally caught up with me three years ago and settled in my brain. As the uninvited guest feasted on my gray matter I could hardly speak or think, let alone read or write. I could no longer walk or eat without assistance. Two nurses had to support me when I went to the bathroom. Everything going on around me pretty much passed me by, and it looked as if I’d really come to the end of the final act, although I myself was firmly convinced that what I was watching was still the curtain raiser.

            A miracle, in the form of the right combination of medicines, turned the entire incident into a badly timed, overly prolonged intermission, and after three months in the hospital I started out on the toilsome road to recovery. Every now and then I decided it was time for all this business to be over and I’d do a failed imitation of stepping out briskly into the street. Within a few seconds I ‘d lose my balance and end up flat on my face. While lying on the ground I cursed the sidewalks, which were too crooked and had turned the world into a big playground slide.

            When I finally allowed reality to dawn on me I found I was in for a big shock. I realized that the encephalitis had ruthlessly pushed into the background all the features that make me who I am. My character, my past, my surroundings, the things I’ve learned and the things I’ve never wanted to learn had completely disintegrated. All that was left was a wobbly man, a man who was barely capable of doing anything anymore and had turned into a patient.

            Every human being is like a dish of culinary complexity: an Indonesian rice table, a fejuada, a paella. Some of those dishes are pleasing the minute you smell them; others are an acquired taste. And there are also those that you just can’t get yourself to eat, even after years of trying.

            There are special dishes with mysterious ingredients that you can’t pin down. You take a bite and taste shrimp and curry, but you know there’s more to it than that. So you continue, pleasurably guessing until your plate is empty and you know only one thing: that was delicious, delicious and special.

            When one ingredient gets the upper hand and you can’t taste any of the others, the dish loses its appeal. Someone who’s only a director, only a mother, only a homosexual, only HIV positive, loses the various dimensions that make people so attractive. You’re just a raw onion, an uncooked potato, one of the many onions and potatoes that make up the huge pile.

            The terrible thing about being sick is that you’re robbed of the dozens of features that make you who you are. For that reason alone there have to be medicines for everyone who’s sick or running the risk of getting sick. Not only do all of us have the right to live, but we also have the right to versatility, we have the right to become more than a raw onion or an uncooked potato. We have the right to be an entire dish.

            I’ve been lucky. I just so happen to have been born in the right place and in the right family. That’s why I’m back to being a dish with lots of vegetables, big chunks of meat, plenty of fish, a pinch of salt and pepper, a dash of rosemary, a few herbs that you can’t quite identify and a splash of cream.

            After three years I’m a bowl of hearty soup once again, filled to the brim.

 

 

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14. The waiting room

 

Timeless furniture, a withered plant, a faded poster on the wall, a three-day-old newspaper, an uneasy silence – the doctor’s waiting room.

            Waiting is being condemned to do nothing. You live in a vacuum between everyday existence and the not-so-everyday that’s now taking shape. You can’t do anything but kill time. I read a book, but whatever I’m reading doesn’t register. I take notes, but my mind is elsewhere. Every activity in the waiting room is a diversionary tactic doomed to failure.

            This hovering between two different worlds is a comfortable escape in the airport lounge, but it’s agony in the doctor’s waiting room. There, after the waiting is over you’re forced into another kind of passivity. You’re handed over to someone who gets paid to torture you for your own good, someone who’s able to tell you whether you’re going to spend the rest of your life limping or half-blind – someone who’s able to tell if there’s going to be any rest of your life at all. While the airport lounge is filled with reassuring music, every time I’m in the doctor’s waiting room all I can hear is a lacerating drill.

            The scrawny man in his corduroy jacket sitting across from me is pretending to be utterly relaxed, so relaxed that he’s tempted to whistle a little tune. He doesn’t want to disturb the rest of us, however, so he purses his lips and whistles a noiseless tune.

            Waiting is whistling a noiseless tune.

            You can’t very well talk to the other people in the waiting room about how unpleasant waiting is. If you start a conversation, you let everybody know that waiting is tough on you, that you’re anxious about the unknown that’s just around the corner, that you admit to being weak and vulnerable. This is against waiting room etiquette, where the rule is that we have to pretend we’re not waiting.

            The deep sigh, the sigh of waiting, the glance at the watch, even the complaint, made to no one in particular, that “it sure is taking a long time” – these are desperate attempts to penetrate the sinister silence; they’re veiled invitations to talk. Others in the waiting room – those who are less amateurish, those who have mastered the art of waiting – pretend they don’t hear the silent cry for help. A few of them nod sympathetically, mutter something perhaps, but you’ll never hear a real discussion about how powerless and dependent we feel. That would only serve to underscore the powerlessness and the dependency; it would break the taboo. There’s very little mutual support in waiting rooms; we all wait together, but each on his own behalf.

            The waiting room is so alienating that even when we meet an acquaintance there we don’t talk to them in a normal way. We ask them in whispers how it’s going at home or at work, we talk softly, ostensibly so as not to disturb the others. But if that were the real reason, then we’d have to whisper in trams and trains and other public places. We whisper in the doctor’s waiting room because the ordinary world, where we can still have an impact and can still entertain some illusion of control, is banned from this place.

            We’ve been handed over to a higher power, just like in church – or in a museum. There’s whispering there, too, and there’s also a higher power in evidence, although usually somewhat less terrifying.

            Perhaps these two ought to be combined somehow – art and the doctor’s waiting room. If you’ve got to be quiet, you might as well be quiet for something that can provide a bit of consolation.

            Art in the doctor’s waiting room – balm for the sick soul, not only in the AMC but also in Tjietjerkstradeel and Venlo, in Rosas and Murcia. No Van Gogh reproduction, no weeping gypsy girl on black velvet, no ceramic figure turned out by an artistic aunt, but real art.

            Maybe I could house some of my growing collection in a doctor’s office in Dordrecht, in a district hospital in Overijsel, with my internist in Barcelona. That way, the patients (myself among them) would have something to look at, something that not only distracts us but also takes us somewhere. The photo by Paul Kooijker, the painting by Zandvliet and the minimalist sculpture by Karin Sander would be sure to evoke responses. And that way I’d finally be able to break through the silence, even when I’m not there.

 

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15. Discretion

 

On my desk are two green candies. They’re part of a work of art by Felix Gonzales-Torres that consists of a mountain of green candies. Everyone’s free to help themselves to the candies, and the owner keeps replenishing them. The work is based on the idea of endless giving. It’s an idea that’s too expensive for me because the work costs too much money. When I explained that to the gallery owner she told me I could help myself to a few candies. What I wanted to do was to stuff all the candies in my bag and pants pockets, all five thousand, but I realized that would be a bit indiscreet so I only took three. One I gave away, the other two I saved. As usual I now regret my discretion. I don’t have the work but I miss it anyway.

            Endless giving, the most beautiful idea in the world.

            Art triggers the finest human impulses and the most horrific. It’s just like love. You think the other person was made for you, for you alone. You think the other person would be so unhappy without you and that all you have to do is convince him of this simple truth. You want this other person for your very own, forever. If he’s gone, the whole world is empty. Even five billion people aren’t enough to make up for that single loss.

            Those green candies were meant for me. If they end up with somebody else it’s just plain wrong. I can’t let them get away with that. But I also can’t let myself get away with spending seven hundred fifty thousand dollars for them.

            We’re in a dilemma, the candies and I. Because I wanted it all I pretended to be discreet. Because I wanted five thousand I only took three. But the candies want to be with me - it’s so obvious. Those two on my desk are lonesome. I can tell. They miss the other four thousand nine hundred eighty-nine.

 

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16. Two empty chairs

 

A photo of two empty beach chairs cut into pieces: a jigsaw puzzle in a plastic bag. It’s called Untitled - Untitled (Last time), from 1989.

            The puzzle makes me think of my own head - two empty beach chairs cut into pieces, Untitled.

            Untitled speaks of absence and loss. All that’s left are two empty beach chairs. Felix Gonzalez-Torres has used two empty beach chairs to make a work of art. He doesn’t say what happened. The strength of the work is that he knows what to leave out so the story can develop. It’s the not knowing that seizes me. The puzzle in my head.

            Felix Gonzalez-Torres has given shape to what he knows and what he feels. It’s a strong shape that keeps on living now that he’s no longer here, cut down by the virus that I struggle with every day.

            He leaves behind two empty beach chairs.

            Maybe it’s a photo of his chair and that of his partner, who died two years earlier. Maybe it’s a photo of two random empty beach chairs. It doesn’t really matter.

Each moment someone else is touched by his jigsaw puzzle story. Felix Gonzalez-Torres lives on. He is an example for me.

 

 

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17. What day is it today?

 

“Do you know where we are now, Mr. Nefkens?” he asked.

            “In the AMC, doctor.”

            “And where is the AMC?”

            This was a trick question and I was ready for it. If I didn’t know where the AMC was it was proof that I was certifiably demented.

            “The AMC is in the AMC, doctor.”

            No argument there. Even so, the doctor was still not completely convinced that I wasn’t demented.

            “Do you know what day it is?”

            I pulled a face as if I couldn’t waste my time answering such dumb questions. But I didn’t know what day it was. The Christmas decoration on my night table didn’t help at all, nor did the calendar for the new year. The snow the doctor pointed to didn’t provide any clue as to what season we were in.

            The doctor wasn’t good at keeping secrets, and at the end of what he called a conversation he told me it was December 31st, that the next day would be New Year’s Day, and that the snow outside indicated it was winter. But December 31st, New Year’s Day and winter meant nothing to me. No lights went on. Despite the festive season, there were no lights at all flickering for me back then.

            December meant nothing, New Year’s meant nothing, winter meant nothing. The doctor could have told me it was Turnip, Turnip 31st, that the next day would be the Feast of Carrots and that we were in the season of goldfish. It would have meant all the same to me – nothing.

 

The next morning he asked me the same questions once again, and once again I couldn’t give him a single answer.

            It’s strange when your own language has become a foreign tongue to you. It makes you uncomfortable when words lose their meaning. It’s also strange to imagine what something is like when you don’t know. How do you imagine “nothing”?

            Rather empty and bare but restless all the same.

            I don’t remember how the words came to make sense again. I only know that gradually a number of words recovered their meanings, or acquired meanings that, as far as I could recall, seemed to coincide with what I thought the meaning once had been – the meaning I was supposed to guess at in the hospital.

            I recognized nothing but I learned fast. I’m a stranger who’s appropriated himself for himself.

            I don’t even know if this is actually the case. All I know is that this is how I experienced it. What it’s like – what it’s really like – I just don’t know. No one knows what it’s really like, but as the years go by you remember all sorts of things, so that it seems as if you know more than you did when you began.

            This way you’re able to avoid having the impression that all that time has been a total waste. Of course the time has been a total waste, but admitting that would be admitting defeat, so we just pretend. And if we just pretend long enough, we starting believing it ourselves.

            We believe that December 31st is the day before New Year’s and that snow falls in the winter. And because we believe it, we ask other people if they believe it, too. And if they believe it, everything’s fine. If they don’t believe it, there’s something wrong with the other guy. He’s someone else we need to feel sorry for, because he doesn’t know when New Year’s is. He doesn’t even know what day it is today.

 

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18. The kindness of friends

 

The hospital room is full of people. They’re sitting in a circle around my bed, doing their very best to keep the conversation going. They ask me how it’s going, but it doesn’t sound like a question. They already know my answer: stubborn silence.

            A roomful of visitors, I think, all of them here for me. I’ve really got to say something. But what do you say to a roomful of visitors? I ponder this a moment but nothing comes to me. Absolutely nothing.

            “It would be so nice if we just knew what was going on inside him,” says a worried friend, drawing up her chair so as not to miss any first word I might utter.

            “If there’s anything going on inside him at all,” says another friend.

            Bitch. Make sure she doesn’t come any more! Because she’s got it all figured out. There’s nothing going on inside me. And if anything was going on inside me I wouldn’t know it, let alone be able to talk about it.

            The friends sigh a little. One of them coughs. Another whispers something, very quietly and respectfully as if this were a church, or a museum of modern art.

            It occurs to me that I really should say something - to help them, poor souls. But that’s all that occurs to me, and I’ve regained enough of my wits to know that that’s the one thing I shouldn’t say. So I don’t say anything.

            “They appear to be aware of their surroundings. That’s what you hear about people who’ve been in a coma for months,” says the friend who isn’t allowed to come anymore. The others nod. They’re not allowed to come anymore either. So it’s a good thing I don’t say anything. If I were to say anything they’d all be back tomorrow.

            “They do appreciate it,” says the friend who caused all the trouble in the first place. One thing I know for sure: if I get better I’m choosing different friends. Friends who don’t come to see me when I’m sick. Friends who know there’s only one response to silence, and that’s to show solidarity by keeping your own mouth shut.

 

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19. Man without a past

 

I’m a man without a past. Whatever happened the day before yesterday, or eight months ago, or forty-eight years ago: I know that it happened but I don’t feel it. It’s as if it happened to someone else. Maybe the past will come back, maybe I’m still in a kind of shock. Maybe not. Maybe it’ll be this way forever.

            It’s really no big deal. When I first realized it I thought it was terrible. I’m not the self I used to be. I want my old self back, I shouted. But now I think, what for? I can’t do anything about it so I might as well accept it. I’m sharing my past with a stranger. A borrowed past. Every day is new. Everything is new.

            (That’s not true, of course. There’s a lot that’s been firmly stamped into me, but I don’t know what it is. And ignorance is bliss as far as that’s concerned. It’s all empty and fresh and tidy. There are lots of strange things I don’t understand. But I don’t mind; that’s just the way it is. I used to want to understand everything, but that’s too much for me now. I’m satisfied with a little bit.)

            People who’ve reached the age of forty-eight must have a past. It often weighs heavily on them - I remember that from before. That past can cause all kinds of problems. At least it seems that way to me, if you have a past. But real knowing is something I don’t do. Every day is an adventure, everything is new. I used to miss the familiar things of life. Now I’m used to having nothing familiar. And that in itself is something familiar, isn’t it?

            I’m someone whose life happened to someone else. Except for the now. What’s happening now is the only real thing. Some people go into therapy for this or sign up with some Eastern philosopher. I didn’t have to do a thing. It just fell into my lap. From one day to the next I lost my past and I was at peace with the present. One cold winter, three icy months, and suddenly it happened.

            I just got lucky. I’m a lucky dog. That’s me.

 

 

 

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20. Virgin

 

It’s damned annoying, all the things that have happened to me in the last year. It’s annoying that I’m still dizzy and disoriented, that even after a year I still feel as if I’m about to fall over. It’s annoying always to be seasick - seasick when I’m walking down the street, even when the world isn’t moving. (Other people think the world isn’t moving; they’re wrong, of course, but that doesn’t make it any less annoying.)

            I’m constantly being surprised. That rarely used to happen to me, but now it happens a hundred and fifty times a day. “Is this who I am now?” I ask myself. (I’m not sure I like that). “What’s coming next?” I often wonder. (An alarming way to live.)

            “What a delicious piece of cake,” I think, as I eat my daily serving of Sachertorte at Escriba, the pastry specialist around the corner. Never in my life have I eaten such tasty cake. “That chocolate curl is out of this world,” I shout with my mouth full to Christian Escriba, who’s known it all along but likes to hear it anyway, every day at ten past four.

            Because my memory isn’t what it used to be, it seems as if I’m experiencing everything for the first time. And if that’s how it seems to be, then that’s how it is.

            A plate of salad - I wonder how would that taste? Sex - what would that be like? I think they’re both wonderful, surprisingly wonderful, especially if they’re well made. Fresh lettuce leaves with a bit of oil and vinegar, some salt and pepper, a few pine nuts tossed on top is the most delicious thing on earth. The same goes for sex. There, too, it’s a question of genuine ingredients - not too much and not too complicated so the true taste can emerge.

            How many people get the chance to experience something twice in their lives for the first time? I do. And it happens to me every day. “What will it be like today,” I wonder as I take Ollie out for the same walk I’ve taken him on every morning for the past five years. And every morning I’m surprised all over again by the fact that he pulls on the leash. Every morning I enjoy the trees on the Gran Via all over again, and every morning - all over again - I take another deep breath of air.

            Every day all over again I luxuriate in my piece of chocolate cake as if I had never tasted anything so delicious in my life; every day all over again I enjoy the colors of Paul Smith and Bernard Frize. I’ve never been in an airplane before, and I clutch the armrests as we zoom up into the air. “I’m a virgin!” I shout with the chocolate still on my lips as we slice through the clouds. I’ll be a virgin forever, every day all over again.

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