NOTES ON A RECOVERED LIFE
NOTES ON A RECOVERED LIFE
Translated by Nancy Forest-Flier
And for my father and Lisette.
The kindness of friends
Father on the phone
It’s all bullshit
Grains of sand
The wrong word
What could it be
Many happy returns
Cut to bits
One year ago
In a hurry
Naked under my skin
Traveling with a stranger
The front door
Funeral on Bali
The right button
Clouds of smoke
Bit by bit
The most beautiful in the world
The bird I used to be
It’s a balmy evening. I’m standing in front of our 1930s house on a stately avenue. The striped awnings are hanging down as if the house were shutting its eyes, blinded by a sun that even now can scarcely be seen. Despite the beautiful weather the street is empty and our house seems uninhabited, although I know that my three brothers and my sister are in their rooms and my mother is resting on the couch, waiting for my father to return from the office.
It’s quiet, deathly quiet. Suddenly it hits me. It starts at my feet and slowly creeps up until it reaches my stomach: a chill that burns, a freeze that doesn’t fade. On the contrary, my hearing has become more acute − the warbling of the birds, the voices in the distance, the buzzing of a bee, a dog barking somewhere far away. My sense of smell has become more acute − the leaves on the trees, the wet grass, the sweet evening air. That warm evening weighs on me so heavily that my legs start shivering and I have to sit down on the edge of the sidewalk.
It’s not only the heavy feeling itself that has caused me to sink down; it’s also the knowledge that the feeling will never go away, that it’s nestled inside me for good, to fuse with who I am. I know I’ll have to find a place that doesn’t resemble this one in any respect, somewhere in the world where the place where people should be isn’t so terrifyingly deserted, where the place where life should thrive isn’t so appallingly quiet.
There are days when my skin feels raw, like a wound without a scab. Everything hurts, including nothing − especially nothing. The dog that barks, a car door slammed in the distance, the frown on the brow of the lady in the bakery, the wind, a cloud in the blue sky that’s just a little too big, the phone ringing, the phone that doesn’t ring − everything burns. Nothing hurts, too − especially nothing.
I know. It’s nothing. That only makes it worse, so I want scream from the pain of nothing. Experience tells me it will be gone by tomorrow. Tomorrow I won’t even hear the barking dog any more. So it’s a question of getting through the day without listening to the lament in my stomach. There’s only one way to do that: my lament will have to move from my stomach to my computer screen. Whatever is inside me, the gnawing complaint, has to be transferred to black-and-white. Only then can I see it for what it is: nothing. Only when it’s no longer in my stomach will I be rid of it.
What could it be?
The speech therapist says it’s quite normal for people to change after something dramatic has happened to them. She says this between two pictures: one of a cream pie and one of something else whose name I still don’t know. She says that people can sometimes get very angry all of a sudden, even if they’d never done that before, or can burst into tears, even if such behavior was totally foreign to them.
It reminds me of a few weeks ago, when I angrily stood up from my table in the La Principal bar, seething because they brought me what I had asked for when what I meant was something different. And I recall how I burst into tears that morning in some bar because I was suddenly so moved by the muzak rendition of “The Shadow of Your Smile.” If this goes on, I won’t be able to go anywhere and we’ll have to move once again to another continent.
I ask the speech therapist what causes those changes in mentality: damage to our brain or the fact that we’ve experiences something dramatic? She doesn’t really know; maybe both, she thinks. “Both” is what people always say when they don’t know something. It can be one or the other.
I find it strange that this happens to me, but the fact that I really don’t care what other people think when I rage or howl strikes me as even stranger. I really don’t care, and that indifference sometimes makes me laugh out loud. I rage and howl, but at the same time I have to laugh at the person I’ve become.
“You use it pitch a tent, to secure a boat in the harbor or to hoist yourself up when you’re climbing mountains. They even used to use it to hang people, but fortunately that doesn’t happen anymore,” says the speech therapist as she taps on the second card.
“It’s different in Spanish than in Dutch,” I mutter, and I wonder what the Dutch word is for the thing they tie around your neck when they hang you and then use to secure a boat.
The odd thing is that when I remember the Spanish words, the Dutch and English words come back, too, as if they were all riveted together. If I don’t know a word in one language, I don’t know it in the other languages either. But if I discover boom, I find it’s connected to arbol and tree. Lepel is connected to cuchara and spoon. Three for the price of one − four, actually, for when I visit an acquaintance in Paris and explain that I can’t speak French anymore because of my encephalitis, and tell her how much I regret this because it’s such a beautiful language, she points out that I’m saying this in fluent French.
So I speak the language all right. The words are there. I just don’t know they’re there.
Like hugging a lost child so he won’t run away again − that’s what I do with words when I recover them. Black on white, I store them in my computer archive where they’re safer than in my head. Except if my computer were also attacked by a virus. That electronic HIV would destroy everything I’ve got, because I don’t have a back-up or an external hard drive. If that were to happen, an emptiness would form like the one in my head, an emptiness so full that nothing else would fit in it, not a single thought, not a single word.
Fearing such emptiness, I grab hold of everything I think and quickly write it down. I’m not going to lose it a second time, that’s for sure. I’m not going to be left behind with nothing.
I saw it the minute I got out of the elevator: there’s something wrong with the stairs in the hall. They’re going to be repaired soon. Until that happens we’ll have to make do without the first two steps and half of the third, and the railing is gone.
Stairs are my weak point right now. I have visions of tumbling down the stairs -- and they’re not imaginary visions, either, because I’ve been doing a lot of tumbling lately even without stairs. Fortunately the stairs have railings for me to hold onto. I’m a great believer in railings, even when there are no stairs. A railing is something everyone has a need for, even on the ground flood.
When I come to a set of stairs I push myself against the wall and firmly latch onto the railing. Then I slowly lower myself down, step by step, with a nonchalant expression as if this were all quite normal. But when there’s no railing, or no wall to push myself against, that’s when it gets difficult. So I’ve made a deal with myself that this is a no-go situation and that it’s better for everyone if I leave the stairs alone and go do something else.
And that’s what happened today. No big deal. We’re just not going outside today. I’m calling the dog-walking service to come for Ollie. Not that I’m going to let myself be thrown by some insignificant detail. Actually a couple of broken steps and a nonexistent railing don’t faze me in the least, but why make life unnecessarily complicated?
So we turn around, the ninety-four-year-old neighbor man and me, and we both take the elevator back up. Going down the stairs and walking outside − you don’t need to make a habit of everything. With a bit of luck the stairs will be fixed by tomorrow. If not, Monday then. The weekend will be over before you know it.
I walk through the movable gangway at Schiphol and feel like a snake shedding his old skin. Thirteen hours later the plane cleaves the gray-brown blanket of smog; Mexico City is the color of a faded photograph. The horizon keeps shifting, yielding to more and more buildings, more highways, more towers. I follow a black spot passing over the houses and streets. Only after a while do I realize that it’s the shadow of my own plane.
As we land, brushing past high rises with laundry hanging on the roofs, I see a big billboard with only a name on it: Yaco. I ask myself what it is: soap, a yoghurt drink, the name of a locally known singer? I cherish this ignorance. It’s proof that I’ve descended on a completely different world.
I’m having my first power lesson with a female trainer who is also a physical therapist. What I want to do is develop my muscles. I want to get strong so nothing can ever happen to me again. The physical therapist listens attentively to me and suggests that we start slowly with a few walking exercises.
“This ought to fill up that sixty-euro hour in no time,” I say to myself, and proceed to fall over.
I have to walk upright without looking at the ground and without falling over, but I can’t do that.
“I don’t want to walk upright,” I scream at the physical therapist. “I want muscles. I want to get strong.”
“Sounds good to me,” says the physical therapist. “Let’s try walking once again. Just hold onto me.”
We try it once more. I totter and sway. I almost fall over but manage to grab her shoulder just in time. I try it again, now without holding onto anything, and fall flat on my face.
I’m forty-eight years old and I have to learn to walk again. I don’t care if I do or I don’t, but I have no idea what the alternative is. You have to walk. No one ever asks whether you feel like it or not. They don’t ask what you prefer, fish or chicken or vegetarian. Life is no Singapore Airlines. Life is a treadmill, a treadmill that never stops − until it stops for good, and that’s no good, either.
Today I’m going to do my exercises at home. One leg up and the other leg down, or vice versa. Fortunately my physiotherapist has written it down, or I’d forget it for sure. Because walking is a pretty complicated business. It’s something you’ve got to learn, step by step. While I’d much rather run.
I don’t go to the theater anymore. I visit the Aphasia Society waiting room four times a week, and no performance can beat that. It’s a feast for the eyes and it doesn’t cost me a thing.
Yesterday I was there for an hour, between my lesson to learn to read again and my lesson to learn how to vent my feelings. The wife of a fellow aphasiacs said her husband had gone to speech lessons. Two months ago he had a stroke and now he can no longer talk. She said he gets angry when she doesn’t understand him. He starts shouting, clasps his arms around his body and moves his head wildly up and down. It shocks her and she doesn’t think it’s fair. She does everything to help her husband and all he does is get angry at her.
David cracked up his car thirteen years ago. Since then he hasn’t been able to do anything. After thirteen years of exercising three times a week he can walk a little and talk a little. But when he can’t find the right words he gets very, very angry.
The waiting room of the Aphasia Society is the only place on earth where the people are angrier than I am.
Jose Luis has been coming to the Society for five years. Five years ago he could neither walk nor talk. Now he can move around and make noises. A word to the wise (even a couple of noises) is sufficient. He makes a sound like a vacuum cleaner and we all know he means speech therapist.
Mr. Pereira can sing beautifully. He doesn’t have enough vocabulary to hold a conversation, but he knows the lyrics to all the songs he’s ever learned.
“What’s your granddaughter’s name, Mr. Pereira?”
“How big is she?”
He points to his waist. “Two months.”
“But it’s true.”
“Is she two years old, perhaps?”
Mr. Pereira nods enthusiastically and looks happy, with those big green eyes of his that always seem as if they were about to disappear into his face. He may not know his granddaughter’s name any more but that doesn’t mean he’s forgotten her.
I’m glad I know the difference between a month and a year. I know that time passes in a certain way, although I don’t feel the passing as strongly as I used to. It’s like some people who divide time into the period before and after the war; my life is divided into the period before and after December 8, 2001.
Mr. Pereira strips words of their value. A month, a year, a name − the things that mean so much in daily life don’t mean anything to him anymore. He doesn’t like to talk. When he does say something, the non-aphasiacs immediately start asking about what it means and whether it’s correct or not. They never ask about what he’s really saying: that he’s crazy about his granddaughter.
We often dislike the things that we could do before the war. You’re never thrilled by the things that require a lot of effort and that you can’t do very well.
Mr. Pereira, José Luis, David, the man who gets so angry at his long-suffering wife, me − we all have our place in the waiting room of the Aphasia Society. I belong here. It’s home.
“You have to buy the newspaper every day,” says my speech therapist. “You’re certainly up to it.” It was an order. So today, for the first time in ten months, I bought the newspaper. Or was it eleven? Counting is still a bit difficult for me.
It’s a thick newspaper, and today there are plenty of articles: America, Iraq, the economy, the Spanish political situation − all of them subjects I haven’t paid any attention to for the last ten months bec
ause the information couldn’t get through to me. Or was it eleven months?
I don’t have a math teacher yet, but I really need one. Or maybe not. It’s horrible to go through life as an illiterate. A whole lot of interesting information passes you by. But math is something I haven’t missed very much. It’s a kind of blessed ignorance that I’ve rather enjoyed. Occasionally I called the bank and asked how much was in my account. The lady told me a number, but because it was more than four I couldn’t grasp it very well. “Then I can still buy this work of art,” I told her. She thought I was telling her a fact, but actually it was a question. She never said no.
With the help of the lady from the bank I can go through life without having to do any math. But a life without reading is boring. Nobody’s there to fill in the gaps.
Now I’m going to decide what article I’m going to read. Maybe something from the book supplement, a piece about a writer. A short piece about a writer who lost his memory. That sounds fascinating. Whether I’ll still remember it on Monday, when I have my reading lesson, is another matter. But at least I’ll have done my homework.
My brother has brought me a bag with things in it that I had left in Amsterdam. I had tried to visualize what might be inside and came up with two or three things. When I finally open the bag it’s a big surprise. What beautiful shirts! The person who bought them must have had wonderful taste! My own shirt is a present for me. I’m very pleased with it and today I’ve put it on for the first time.
My head is a bag that I’ve left somewhere and that my brother is bringing me. Each time I open it I find myself looking at a bag full of surprises. Some things please me and others don’t (I never would have bought them myself).
Sometimes it’s nice not to know anything anymore. It makes the bag feel light. But it can also be a problem: when you travel light, you may find you need something that you don’t have with you. You’ve got it all right, but it’s somewhere else. That’s the way it is with me. Besides the light bag there’s also an enormous trunk, but I can’t open the lock − I’ve lost the key. So the trunk stays shut. I’ll just have to make do with the weekend bag, that endless source of surprises.
Aphasia is a handy hat rack that I can hang anything on, including all the negative stuff. One of them is the nausea that I’ve had for more than a year now. But I had that nausea before I came down with aphasia. Back then it was a side effect. There was never anything really wrong with me, it was just the medicines I was reacting to.
Nausea is a well-known side effect of the HIV inhibitors I take, all five of them. But side effects have been out of fashion for quite some time now. I don’t talk about HIV anymore. Forty million people have it; it’s so common. No, aphasia is a much more difficult word. Not many people have heard of it. It’s more exclusive. That’s why I’d rather have it.
Like a good aphasiac I’m all too eager to forget that common disorder, but that doesn’t make the nausea go away. It’s always there, though sometimes it’s less noticeable. Getting used to something and aphasia − every cloud has a silver lining.
But every evening at about eight o’clock it gets tough. That’s when there’s no getting around it. I’m sick and tired and all I want to do is go to bed.
I haven’t had an appetite for a long time. Sometimes I think about the time when I could eat like there was no tomorrow. There was never enough: a cow, a horse, a horse and a half and I still couldn’t sleep from the hunger. Now I dread mealtimes. I never feel like eating. Except the things I never used to like. Sweet things, for example. I’m not hungry, but a slice of Sachertorte goes down as easy as pie (as long as it’s from the Escriba bakery). I’ve become terribly critical. It really has to be the best of the best or I won’t eat it. That’s a bit of an excuse, actually. I’m looking for excuses for not eating, which I never did before.
What I did do before is no longer very clear to me. That’s a symptom of the aphasia, fortunately, not of the HIV. I think. I tend to get symptoms and side effects mixed up. That’s why I’m only too eager to blame it on the aphasia these days. A handy hat rack that I can hang anything on, including all the negative stuff. Or did I already say that?
The apartment is spacious. It has a high, white ceiling, a parquet floor and large windows with half-open Venetian blinds. The daylight casts a shadow of stripes on the blank walls, making the apartment look like a film set or stage scenery, a staged place.
Felipe asks if I like it. Everything pleases me right now: the apartment in an old-fashioned district of Mexico City, the street with the wide esplanade in the middle, the city with its millions of people who all seem to be outside at the same time, the country with the musical language and Mexico’s ardently worshipped Guadalupe, the mysterious smiling virgin. Felipe pleases me most of all, with his sparkling eyes that look at me so hopefully. He’s twenty-four, just like me, but he seems so much wiser; maybe it’s because I haven’t fully mastered Spanish yet.
Even before my lips touch his, Felipe has opened his mouth for me. I search for his tongue, stroke the roof of his mouth and feel my way along his teeth, one by one. He tastes of coffee, oranges and chili peppers; I discover a pit that got stuck between his molars and swallow it.
Later on I notice his white briefs hanging on the back of the chair. “Yaco” it says in big letters on the red elastic waistband.
Sometimes I can act as if there’s nothing wrong, as if I’m still the same. But when it comes to climbing stairs I invariably screw up.
It’s even true with stairs that aren’t stairs but little steps. Two or three steps are enough to set me back, and I reach for a railing that isn’t there. Someone who gets dizzy and reaches out for an invisible railing doesn’t really make an entrance − he descends on the scene, even if he doesn’t fall flat on the floor.
A world without levels would be ideal for me. Then I could really act as if nothing was wrong.
If you can’t be strong, be smart. And if you can’t be smart, at least give people the impression that you’re not stupid. It’s a question of tricks. The older you are, the more tricks you have up your sleeve and the more people think you’re smart.
That’s the tragedy of aphasia: you lose all your tricks. People think you’re stupid and clumsy because you don’t have any of the tricks that other people use to hide their stupidity and clumsiness.
But life wouldn’t be life if you didn’t quickly come up with new tricks to disguise the absence of the old ones. I’ve put together a whole new collection, almost as much as I had at first, to skirt the track of obstacles that my daily life has become. It starts in the morning in the shower. Showering was so difficult, so slippery, that I had started dreading it the night before. Now I shower at the gym. There are thirty showers there with built-in shampoo and built-in soap dispensers and strong water pressure that more or less happens all by itself. If one doesn’t work, there are always twenty-nine others. There’s so much room that no one notices as I slide from one shower to the next.
Breakfast was another obstacle. I still can’t get my own breakfast so I have breakfast at the bar on the corner by the gym. Every morning I go to the sidewalk café and order fresh juice, a glass of water and a tuna fish sandwich. I’m already a regular. They know what I eat every morning so all I have to do is show up and my breakfast appears.
It helps to have money. You can use it to buy what other people have to do themselves. Luxury hotels were invented especially for people with money. They’re based on the assumption that people with money can’t do anything on their own. People with money take my reality for granted. When something goes wrong, people with money are allowed to stamp their feet and rant and rave. That’s what they pay for; that’s normal for people with money.
Tricks, as I said, is what it’s all about.
This morning my plan was to buy bread. For the first time. Alone. I didn’t sleep very well last night. I mean, anything can go wrong. Say that Ollie pulls on his leash or has to stop and poop. I clean it up, and as I do I drop the bread. Or I accidentally thrown the bread in the garbage container and take Ollie’s poop bag home. The most unexpected things are the things that happen. You’ve got to be prepared for anything.
Thrashing around in bed, I imagine what would happen if the baker didn’t have any change. So in the middle of the night I started searching for coins. Then I fell into a restless sleep.
I woke up with the thought that I might buy the wrong bread. Not the bread that we eat every morning, but another kind of bread. How can I be absolutely sure that I’m taking the right bread home with me?
I decided to postpone the excursion one more day. I’ll save the bread that Felipe buys for me today, keep it in the original paper and take it with me tomorrow, with just the right change. And I’ll buy two loaves that are exactly the same. Then I’ll know for sure that I’ve got the right ones. There’s a practical solution to every problem.
But this morning I’m not going to buy any bread.
In the hospital I was often struck by a sudden and overwhelming sense of panic. I can’t remember what the panic was all about − what it was that filled me with such anxiety. I can’t even remember what it was like. All I know is that it happened. And even now I still get this vague, unpleasant feeling. It’s not really a memory − more like imagining something that tastes really bad without ever having actually tried it. It’s like someone else’s memory, someone whom you, vicariously, can’t stand. I think that’s the key − that vicarious bit. I no longer really knew who I was or what was happening, so it’s no wonder I panicked. That thought alone is enough to frighten the daylights out of you.
With the help of strong medicines, the whole business − me, that is − was brought under control. I’m no longer bothered by panic attacks, although I do get something that comes very close. It isn’t focused on the inside, as it was in the hospital, but more on the outside. It has the same intensity as that former panic did, except this is more like anger − and there’s no holding it back, not with the best will in the world. It’s terrible. It’s like an itchy scar, but tame in comparison with the power it could unleash.
It hits me all of a sudden, but with such regularity that I can hardly call it unexpected any more. I’m in a restaurant, I’ve finished eating and I’ve asked for the check. The check doesn’t come, or at any rate it doesn’t come fast enough.
And I get angry. Very angry. I become furious, raging. I stand up, grab the tablecloth and tear it in two. I grab the plates, one by one, and smash them to smithereens against the wall. Then come the glasses, and the silverware. It all leaves a brown smear on the wallpaper. I throw the ashtray at the table next to us. When the frightened people stand up and move back, I grab them by their short hairs and hurl them against the wall. One of the personnel hurries out to save the rest of the clientèle. I grab him by the throat and squeeze so hard that I hear a quiet crack, like the sound of a brittle chicken bone. “The check!” I scream. “I asked for the check ten minutes ago!”
This is what I would like to do, but I just stare straight ahead. When I start trembling a bit too hard and feel like I’m losing control, I stand up and walk out of the restaurant. Felipe follows me, muttering excuses to the waiters and the startled onlookers. “He hasn’t been himself lately. I’m so sorry,” he says.
I slam the door and quickly cross the street. This is one of the few times when I don’t totter. But I don’t do anything else. After all, they might think there was something wrong with me.
Objects, too, have shorter fuses these days. Take the avocado that I wanted to slice for breakfast this morning. Once upon a time − last year − the avocado let itself be sliced quite easily. Now it puts up a fight; it lies there in such a way that I can’t get the knife in. If I say anything − come on, lie down, behave yourself − it starts acting up. It grumbles and twists and moves around, and I’ve even seen it fly through the air, smack, right against the wall, breaking up into little green pieces, a live guacamole.
What the avocado does in its spare time is its own business, of course, but when it starts staining my kitchen walls it means that other people suffer, other people have to clean up all that green gunk. I tried talking calmly to the avocado and explaining that there are less passionate ways of expressing yourself, but it’s all a waste of time. It just won’t listen. It goes its own way, through the kitchen and − thwack − all over the gleaming white tiles.
Sometimes I long for the good old days, when avocados listened to you and tiles stayed gleaming white. But those days are gone forever. Everything has changed and the avocado does what it likes.
I’ve decided to resign myself to the situation and not to lower myself to the level of the angry avocado. Calmness and control, those are the essential differences between a piece of fruit and a human being, between an angry piece of fruit and a grown-up human being.
It’s two o’clock in the morning and still warm. The window is open, the polluted air of Mexico City stings my throat. It’s like green jalapeño peppers − they make my eyes water but I eat them all the same.
I hear the garbage truck in the distance. Felipe has mounted a cover on my big work table with a microphone, so my words can be heard in Hilversum during the morning hours. I’m broadcasting live, but I’m on hold. Before I can make my report on a leaking nuclear power plant in the state of Veracruz, I have to listen to the pedestrians and bicyclists as they take the ferry over the IJ to work on this cold Amsterdam February morning.
I’ve finally got what I always wanted: to be in two places at the same time, home and far away.
Sometimes I’m forced to talk, and when I am I have to think about why I have to say anything at all. Somehow I make a connection between talking and thinking. That shows how sick I am. Only when I’m completely cured will I stop connecting the two.
For me talking is terrible, talking is torture. It’s just like walking, mathematics or remembering − it’s cruel. An idea doesn’t show up naked. Only when it’s disguised, so you scarcely recognize it as a thought, can I bear to look at it.
I want to watch with the sound off, because watching with the sound on is too much like talking. Maybe that’s why I like writing so much; you can write with the sound off. When you read, the sound has to go back on, which is why I don’t like reading. I never read what I write, or I read it only if I make a deal with myself to forget it right away. And then I make another deal not to forget the deal.
Recently I was in a museum. You could rent headphones there that provide you with an explanation so you can understand the paintings better. That would really help me, as a new stupid person, I thought. But the explanation was about the paintings. I turned off the sound. I kept the headphones on because I didn’t want to look too conspicuous among all the other visitors. Only later did I listen to the recording − all by myself, in a dark restroom.
Image with explanation is excessive. It’s confusing for types like me. That’s why I prefer to go through life with the sound off. If other people listen to what I saw or write, I can’t help it. I can’t take their sick penchant for overkill into account. Certainly not if the problems can be solved with one push of a button.
In the beginning I hated it, this chaos in my head and in my life. It was a source of endless irritation; I wanted everything to be nice and neat, I wanted to straighten up the mess. But it didn’t work.
Recently I’ve found some bright spots in this dark picture. There’s a certain freedom in all the chaos. It’s such a mess that I wouldn’t know where to begin straightening it up, so I just let it go. I forget a great deal. In the past, part of my head was filled with all the things I couldn’t risk forgetting without letting it all slip into chaos. Now that the chaos is here, there’s room for other things. It’s empty upstairs; it’s spacious and rather bare. That gives me a feeling of fresh freedom. Organization has its own beauty, but it’s a beauty that I can’t achieve right now. I’ll have to make do with the chaos that’s here. The more I accept this, the more space there is − space for emptiness, for nothing.
Perhaps this idea of chaos has to do with the fact that I’ve lost the sense of time. Time is like euros. I know what it’s worth if I convert it, but I can’t feel it. Maybe that’s why it’s so difficult for me to be patient. I don’t understand “later” very well, just like I don’t understand “back then” either. The only thing I can comprehend is “now.”
I’m like a little kid or an enlightened Buddhist, someone who’s studied the essence of existence all his life. It just fell into my lap. It happened when I wasn’t paying attention. Some people call it a sickness, a neurological disorder. Other people call it enlightenment. A few even regard it as nirvana.
Every so often at some unexpected moment, when there’s nothing else going on, it occurs to me that this isn’t really so strange after all; it’s a kind of heaven. But usually it’s just plan tedious. It’s no fun being the sole occupant of nirvana when all my friends are just living on planet earth. It makes me homesick. I want to be with them, off my cloud, away from nirvana. I just want to be back on earth, like everybody else.
During a dinner in Basel, a serious German gentleman asks out of politeness what I collect. I can’t think of a single name and I look at my best friend Frank (because he knows everything; that’s why I brought him along), but Frank is deep in conversation with a famous painter. I try thinking harder and point to the painter, understanding full well that that doesn’t count, but not a single name occurs to me. I pause for a moment, then I tell the German gentleman that I’ve had encephalitis and that remembering is still rather difficult for me. So I tidily manage to divert the conversation, despite and mainly thanks to my encephalitis. Afterwards the artists trickle back in. “It’s me again,” says Jeff Wall. “Me too!” shouts Bill Viola. “And me,” says Tony Oursler. Pipilotti Rist sticks out her tongue, always a sure-fire attention-getter.
I experience life as passive knowledge. I recognize most of it, but I can’t come up with it on my own. It’s like a language that I don’t speak that I can read and understand perfectly. But my life is not a dead language; my life is alive. My passive knowledge is a tad awkward in a world that expects you to spout a bit of knowledge every now and then.
Felipe slips up sometimes. He asks me questions that I used to know the answer to. Back then I never even gave him the chance to ask questions; I spouted my knowledge left and right, I told him everything, whether he wanted to know it or not: the price of a ton of West Brent [don’t know what this is!], the capital of Slovakia, when Charlemagne was born and what the distance is between Vienna and Berlin. I don’t know that anymore, and I don’t want to know it anymore, either.
Yesterday Felipe accidentally asked me the exchange rate of the Swiss franc. I gave him an angry look and he got it right away. He apologized for asking such a dumb question.
It was just like the question the doctor asked who wanted me to tell him what day it was. I don’t answer such dumb questions, certainly when I don’t know the answer.
Felipe and I are in Bangkok. It’s my first big trip since I’ve been “better.” The airport smells exactly the same, the people greet us with the same friendly laughs. The hotel driver still remembers us from the last time. We ride in the same beige Mercedes down the same highway that looks exactly the same, just like the city. We’re stuck in exactly the same place in a traffic jam that lasts exactly as long as the last time.
The hotel is still in the same place, we have the same room with the same view of the same river as the last time we were here, two years ago, before I got sick. We set off to do exactly what we did the last time. We stroll down the same street to the same restaurant, where they also recognize us. Suddenly I remember how we walked from our hotel to this classic Thai restaurant the last time, telling stories about our youth. Felipe’s stories took place in Mexico City, more than nine thousand kilometers from mine in Rotterdam, yet we experienced the same things: mothers who sometimes didn’t seem to be there, even though they were sitting right across from us, fathers too busy with important things, brothers and sisters who played games we didn’t want to play.
I order the same things I ordered the last time, that is, what I suspect I ate the last time. And suddenly I see Felipe’s mother before me as she answers him by way of a song. When Felipe used to ask her things as a child, she never gave him a direct answer but sang a song instead. Then he would have to interpret whatever it was she meant. Her repertoire was endless, but Felipe never knew if he was deciphering her code the right way.
The fact that everything is exactly as it was two years ago, that the Thai still remember me − but mostly: that I remember it all − is a completely new experience in my present state. The fact that I can still remember some of what Felipe and I discussed at the time gives me goose bumps of surprise and pleasure. I had to travel to Thailand to come home.
Then, on the third day, I suddenly have the urge to discover something new. During our travels before I got sick we always went exploring: Myanmar, Cambodia, Laos, Vietnam. I want to do that now − I want to go to a country that I know nothing about, a city I know nothing about.
But I don’t. I’m much too sensible. What I do decide is that we’ll have lunch at a unknown place. I’ll ask the driver to drive along a new route and to get stuck in traffic where we’ve never been stuck in traffic before.
Many happy returns
Sometimes I come across notes in my date book that I made six months ago. Most of the time I can’t decipher them. I look at handwriting that is no longer mine; it’s childish scribbling. Sometimes I wonder whether I haven’t become a bit of the child I never was. And I wonder what that means for all those poor people living around me.
What the childish handwriting mostly noted was birthdays. I read that today is Licura’s birthday. But I haven’t the slightest idea who Licura is or what name I was trying to write. So the person whose birthday is today won’t hear from me, and won’t hold it against me because I’ve been seriously ill.
But I haven’t forgotten Licura’s birthday entirely. I’m thinking about him and wondering who he is, and whether he is maybe a she. So many happy returns, Licura − whoever and wherever you are.
The uncomfortable looking laboratory receptionist hands me an envelope, which I open when I get out on the street. It says: anti-cuerpos antigenos HIV − positivo.
Does positive mean negative? Does positive mean that in a few years I’ll be dead?
I stand in the middle of that busy street in Mexico City. Cars race past me, pedestrians push me from behind, daylight begins to fade.
I calculate that if there’s a 10 percent chance that the results of this test are incorrect (as the doctor told me after finally agreeing to give me a few minutes of his time), and you have a 50 percent chance of getting AIDS if you’re HIV positive, then I have a 45 percent chance of being dead within two years. Or is it 47.5 percent? I’ve never been very good in math, and I wonder if there’s any point in learning now.
Cut to pieces
“I have something for you,” says the speech therapist. She says this every time, as if she’s talking about an amusing surprise, a surprise with a funny poem that’ll make me howl with laughter. And every time it’s a confrontation with something I can’t do, which is why I have yet to howl with laughter.
This time she’s cut an article into pieces, and the idea is that I’m supposed to put the pieces back in the right order. So that means that I have to read the article, which puts the speech therapist in the territory of the reading teacher. What happens when people enter places where they have no business is something we see every day on television in Baghdad. I cannot allow this, for political and mainly for moral reasons.
First I stare at the clippings from which I’m supposed to make one whole piece. As far as I’m concerned it doesn’t matter what order they’re in, because I’m not going to read the piece for political and moral reasons. Then I think of a cunning trick (if you can’t read, be clever) and turn all the pieces over. On the back is a photograph , which I manage to put together in no time. When that’s done, I turn the clippings back over and tell the speech therapist that she now has the article she so urgently wanted to read but instead cut into pieces in a fit of mischief. That floors her. It also doesn’t help that I say this in Dutch, and she doesn’t speak Dutch. She refuses to go to Dutch lessons − but that often happens with non-aphasiacs. They’re terribly stubborn.
So I know what I have to do. Reality has been cut into pieces, and I just have to turn it over and put it together. This aphasia lesson isn’t pointless at all, but whether the speech therapist has learned very much from it remains to be seen.
One year ago
Someone told me that I was admitted to the AMC on December 8, which is how I know it happened one year ago yesterday. The way I feel it could have happened two weeks ago, forty years ago, never. The way I feel, two weeks ago, forty years ago and never all happened at the same time.
“Never” is the one I want most of all.
My life has not been without its unpleasant things. “Too bad for me,” I say to myself when they come along. But I’ve learned from them. They’ve become part of myself. They belong to me, just like my nose and my eyes belong to me. I couldn’t be without them.
That’s not true with this event. Never in my life have I so wanted to wish something away. If I were given one thing to wish for, it would be that this had never happened, even though things have happened in my life that were much worse − irreversible things, things that certainly would never have been missed if they hadn’t happened at all. But I accept those things.
This is the one thing that makes me silently hope that somebody will tell me it was all a bad dream, a dream that seemed real but wasn’t. My preference is that it’s my doctor who tells me: he’s a doctor, he knows, and if he says so then it’s true.
I keep hoping it didn’t happen. Like a mother who hopes that her dead child, recently killed in a car accident, will come skipping around the corner, I keep hoping that my doctor will tell me it wasn’t real. Like that mother who is repeatedly disappointed, I’m disappointed when my doctor doesn’t deny the truth.
It surprises me that I want reality to be different from what it is. Before this happened, my most ardent wish was to be able to see reality just as it is. “If I can just see it as it is, I’ll be able to understand it and live with it,” I used to say to myself.
Now I don’t want to see reality any more. By hiding my head in the sand I try to undo something that’s already happened.
Of course I know that you can’t undo something that already happened. Of course I know you’ve got to make the best of the things you can’t change. I know it, but I don’t want to know it, and not wanting to know it is stronger than anything else. Never in my life have I not wanted something so badly. I don’t want it so badly that it surprises even me. It leaves me speechless. Not wanting something with this much intensity is just not me; putting so much energy into something that there’s hardly any energy left for other things − it’s just not me.
I used to wonder why this is so. I analyzed it, all the while thinking that it would be much easier to live with it if I could just understand it. But I don’t want to think about it now. I don’t want to analyze, I don’t want to understand it, I only want to live. I want to live, but not under those conditions. My will to live is just as strong as my will not to understand. And that will surprises me, too. I knew what I wanted − but that I wanted it so badly, no, even I couldn’t have suspected that.
Right now I’m just going to concentrate on wanting and being surprised. I don’t have a second of time for anything else.
In a hurry
When I was fresh out of the hospital, one year ago, I had my own unique way of walking. Instead of picking one leg up and then putting it down − first the heel and then the rest of the foot, as was explained to me during physical therapy − I just fell forward, after which I would quickly heave myself back up. This meant that I didn’t tumble to the ground but advanced by fits and starts. I called that walking.
The people around me held onto me with their heart in their mouth. They were afraid I’d end up flat on my face. But every time they thought I was about to take a nose dive, I disappeared. I was already doing my fall-down walk across the next canal. They could hardly keep up with me.
Not much has changed in that one year. I still jerk my way down the street. I’m in a hurry. I don’t have time to take it easy, because if I do I go slamming into the pavement. Standing still is repugnant to me. I don’t ponder things, either, because pondering − like remembering − is a kind of standing still, which I have to avoid at all costs. Anyway, I have no time for it.
Whenever I have to stop and wait, I’m seized by intense panic. The only way I can master that panic is to get very, very angry; when I’m fit to be tied, I out-scream my own fear. No wonder I pull so hard on Ollie’s leash when he starts sniffing a tree. I want our French bulldog to be a greyhound. I want him to run, just like me.
Sleeping is hard. Sleeping is a form of standing still. It’s worse than that; sleeping is lying still, and you only do that when you’re dead. I’ve was dead long enough.
Reading takes me too long because I have to sit still when I’m reading. I like to write, since writing is running while seated.
I live hard and fast; I’m always in a hurry. It’s like being afraid something will pounce on me if I stand still. I don’t know what that something is. The only way to find out would be to stand still, and I can’t do that.
A wise guy would say that I’m running away from myself, but fortunately I’m not a wise guy. What I have figured out is that I’m running away from what happened. If I were to think about it, I’d be filled such intense and overwhelming retroactive terror that the sparks would fly. That’s why I run, and that’s why I have to move forward. That’s why I write.
Naked under my skin
In some fifteenth-century paintings you see saints who are smiling benignly as they undergo torture. Well, there ain’t no such thing as a free lunch. No pain, no glory. Chopped off hands and heads, nails through the body, arrows, the gridiron − the fantasy of medieval executioners was infinite and original. Each saint was given a custom-made treatment to elevate him to a loftier level.
Like my memory, my knowledge of the saints is rather poor. I’ve got to hit the history books to find out which saint was flayed alive − because I identify with him, or her. That is, I often feel like someone whose skin has been stripped off. Exposed blood and muscles and tissues. Naked − that’s how I feel, without the sanctity. It’s as if the protection that I had so carefully applied for forty-seven years had been pulled off with one firm tug. I stand here as I am, with nothing to cover myself. I feel every gust of wind, every word, every touch. It’s raw and it hurts, but one thing is certain: I feel! I feel the embrace with words, I feel the bright blue of the painting in the hall that’s actually a photograph, I feel the yellow and the orange of the photo that could be a painting. Made with brushstrokes or recorded with light, it doesn’t matter. I’m naked under my skin and I feel everything.
Once upon a time this strong feeling I’m feeling now was tempered. Things were tucked away in various pigeonholes. It was handy, practical and wise − so I don’t want to have anything to do with it anymore. I’m enjoying it, these raw feelings. They’re kind of like uncooked carrots: they make a lot of noise, and chewing them isn’t always a pleasant sight for those around you, but at least I can feel them. I never felt that tempered stuff.
Whenever I’m feeling too many things at the same time, I close my eyes for a minute. Then I carefully let a couple of images trickle in: the patio in the morning light, the dog asleep in his basket, the mountain of clothes that lies waiting patiently for the new day.
Then, after a few minutes, I open my eyes, wide open. I want to see. I want to dress the nakedness under my skin with images, images that are what I am and what others are. We meet each other in those images, so it’s not bare. It’s naked under my skin − but never bare.
Traveling with a stranger
I went on a journey with a stranger this year. No, not someone other than Felipe. Of course not. Felipe is still the same sweet, caring and completely original man. I’m talking about a really different person: the new me.
At first I was a little nervous. You never know how this stranger is going to react, and it can get pretty embarrassing at times, especially for bystanders. So I always maintain a certain distance, hoping no one will see that we’re together. He moves around like somebody who’s had one too many, and like the slightly tipsy he doesn’t realize what kind of impression he’s making on those around him. He doesn’t seem to care, at any rate. And that, of course, is the strangest thing of all: other people may die of shame, but he doesn’t give a hoot.
People are always rushing in to help him – people who think that any minute he’s going to topple over – and he acts as if he doesn’t see them. He stumbles through the most fashionable hotels like a drunken sailor. A stewardess asked him recently if he needed any help putting his bag in the luggage rack. “Oh no, absolutely not,” he said, and then he capsized, disappeared between the seats and was nowhere to be seen. Four stewardesses, the pilot and the co-pilot rushed to help him, but he insisted that nothing had happened. During the entire flight no one left his side. They wanted to avoid any worse accidents, certainly in this time of explosions and catastrophes, but none of this got through to him. He thought the service was terrific. “Only in Asia can you get service like this,” he said, and he decided never to travel in any other continent.
The people in the hotel were extremely attentive, too, he found. Every thirty feet there was someone else waiting to catch him if he started lurching. He himself thought he walked perfectly straight – another example of how the East can influence you. But the personnel complimented him on his jogging. “How nice that you practice in the corridors of the hotel,” the butler said. “How sensible that you don’t let yourself be restricted by the artificial limitations of a gym.”
He’s not much of a reader. He says it’s because of the way the light falls on the page – always the wrong angle. He thinks he can write again, and that it’s perfectly normal not to be able to read what he writes (he can’t read, after all, because of the unsympathetic light). But nobody can decipher his handwriting. I know – I’ve tried. There’s no difference between his handwriting and a child’s drawing; there’s no rhyme or reason to it.
It all goes right past him. He literally sees nothing (or he only sees what suits him). He’s walking around with blinders on, and I could die of embarrassment. But he has no intention of letting himself be bothered. So I’m afraid I have no choice. I’ve got to follow his example and decide I couldn’t care less.
It takes some getting used to − and a lot of practice. But I’ve got no choice. It’s too complicated explaining to everyone that I’m not the person I seem to be. And it doesn’t work. People look at me as if I’m soft in the head, as if he and I are one in the same.
So I guess I’ve got to go on living with this stranger. There’s no other way.