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
Felipe has found a job in the United States. I can get better medical help here than in Mexico, but otherwise there’s not much to do. “Just enjoy it,” my American doctor told me. Except that Felipe works from seven in the morning to late at night, and when I’m all by myself I cannot enjoy a tree in a garden bereft of all human companionship. I scratch on the bark of a beech tree, leaving a pale, bare area that startles me. I run to the garage, grab the super glue that Felipe uses to fix up furniture and glue the bark back onto the tree. From a distance you can’t tell it was ever pulled away.
The front door
“Somebody tried to break in,” said Felipe when I came home last night. “Look, splinters and debris.” He went back to planing the door with a worried expression on his face.
“Gee,” I said. And then I confessed that the door was broken because I had slammed it that afternoon in a fit of rage.
Felipe wanted to know why I had been so angry, but I didn’t know. There was no immediate cause. I went to my photography class and couldn’t find my notebook or my ballpoint, I was late and Ollie gave me a quizzical look.
Felipe was relieved. Luckily it hadn’t been the work of a thief. But I myself was shocked by the slamming of my own door; it’s bad enough when a stranger tries to get into your house, but when you yourself lay into your door it’s just as unsettling.
I didn’t get any sleep last night because of that door − and because of what Felipe said. “They made a mistake in the hospital. I brought one Han in and got another one back. It’s like two babies who get switched. You can return the wrong baby to the hospital, but this is a harder problem to solve.”
He’s right. Felipe got the wrong friend back from the hospital and can’t trade him in for the right one. I’m not kind any more, I’m not nice any more. Mostly I’m angry, always just angry. I get angry at the waiter in the restaurant because he dawdles over the bill, I get angry at the front door because I can’t find my notebook and my pen, I get angry at Ollie because he takes too long sniffing a tree, I get angry at Felipe because eating makes me queasy and I don’t understand my computer lesson.
They can fire the waiter, but the others are completely innocent. They can’t help it.
And I − can I help it? Can’t I just control myself a tiny bit? But I already feel as if I’m exercising tremendous control. After all, I didn’t smash the front door to smithereens, or the waiter, Ollie or Felipe. That in itself is a stunning example of self-discipline, if you ask me.
I think it’s terrible that Felipe is distressed, distressed about me. That’s not my intention. But I can’t help it. The feeling of powerlessness that regularly overwhelms me is so strong that I can’t suppress it. It’s like an erection, except it’s unpleasant.
Last night in bed I decided it would be better if I just had myself committed. Or worse. But I know that being committed, or worse, is much more drastic than my fit of rage. It’s less easy to sweep up than the debris at the front door. I know I have to deal with this myself, but I haven’t the faintest idea how to go about it.
I have only one idea. It’s a resolution. Actually, it was Ollie’s suggestion. Today I’m going to take him out for half an hour and try not to get angry. I’m going to spend that half hour enjoying him, the way I used to. I’m going to practice it today until I succeed. All the other things are unimportant. I’ll drop out of the photography class. I don’t have enough time for it anyway. First I have to take Ollie out and learn to enjoy it.
First that, and then it’s Felipe’s turn.
My life a full plate, and the only way not to make too much of a mess is to divide it into bite-sized bits. In the hope that it won’t get stuck in my throat I cut it up into tiny little pieces. I keep thinking it’s easy to swallow, but then I have another coughing fit and out it comes; the pieces are never small enough. Tiny little is still too big for me, and that makes me angry.
Ollie is a big help. Yesterday he came up with the idea of going for a walk without quarreling. I thought that was asking quite a lot − it would mean not being angry for at least twenty minutes. But we tried it. The first three minutes were fantastic. I enjoyed the early morning; I saw a golden leaf in a puddle of water and looked forward to the chocolate curls I was going to buy at the Escriba bakery.
On the way we passed two girls. “That one looks good,” said one girl to the other.
“What do you mean, the dog or the guy?”
“Both, of course,” she said, and they started laughing.
I beamed. It doesn’t matter whether it’s true or not. It was kindly meant, and that’s all the counts.
Ollie smelled something interesting near a tree and starting pulling. I gave the leash a tug and Ollie turned around.
“I thought we had agreed that we weren’t going to quarrel. It was going to be fun, and we were going to enjoy everything we came across along the way: golden leaves in puddles, Colombian whores looking for their last customer − that kind of thing.”
“Two customers, you mean.”
I gave the leash another tug.
On the way back Ollie peed against every tree, smelled every plastic bag and sniffed every lamppost. At the twelfth lamppost I couldn’t hold back any more and I gave the leash an enormous tug. Ollie flew through the air. He didn’t say anything. He just looked at me, and that was more than enough. I turned my head in shame.
Later we’ll try it again: walking for twenty minutes without getting angry. I’ll see if I can make it this time.
Felipe finds two twenty-euro notes in the pants I gave him this morning because they’re three sizes too big.
“Forty euros! How great! I know exactly where that comes from,” he says while folding the bills up carefully. And he starts telling me that the forty euros is the first money I got from the ATM when I was just beginning to walk again. I went out alone on the street, tottering, spinning and dizzy. Actually he didn’t want me to go, but he had decided it was better if I were to practice being independent again. He had written down my PIN code in big numbers and let me go with his heart in his mouth. Would I ever come back?
I did come back, after a rather long time, because I hadn’t been able to find the street corner. I lost the money along the way, as I lost most things back then − money, keys, my PIN code, my memories, the way.
This story makes me cry. I cry easily these days. The ladies from the Aphasia Society explained to me that this often happens with people who’ve had something go wrong with their brains. We cry at the least little thing. We cry when we’re happy, we cry when we’re sad, and we cry when we’re angry. We’re angry a lot − that’s common behavior, too, and it comes from the powerlessness we feel, the ladies from the Aphasia Society explained to me.
Now I’m sad, happy and angry at the same time, so I cry in triplicate. The worst thing about it all for me is when other people worry, when Felipe worries, when my family and my friends worry. They were worried and I wasn’t there to reassure them.
And that’s another reason to burst into tears.
I want Felipe with me all the time. The only way I feel safe is with him. I hang onto him like a toddler clings to his mother. When he goes to the kitchen to get me some soup and an apple, I follow right behind him. When he takes Ollie out I stand on the balcony, waiting until he comes back. When he goes shopping I walk along, and I sit on a bench with Ollie, waiting until he comes out of the store. It’s terrible for me that recently − for the first time since I got sick − he’s gone back to his workshop to restore antique furniture.
At the same time I want to put it all behind me, everything that happened a year ago in which he was so closely involved. I’ve got to get away from the past as quickly as possible, the way you flee from the place where you witnessed a terrible traffic accident, afraid that the pulverized cars are going to ride over you again. I’ve got to enter the world in which I don’t hang on Felipe, in which I can stand on my own two feet. That’s why I decided a month ago to buy a special work of art.
Felipe asked me whether I was really up to getting back into this sort of thing. There are so many people without scruples. Wouldn’t it be wiser to wait a bit? No way was I going to wait, so I promptly sold my choice securities and bought the most expensive work I’ve ever acquired. In the gallery, when I sealed the deal with a handshake, a wave of warmth washed over me. For the first time in twelve months I didn’t have the feeling that I was tottering. I felt strong. It was that handshake had pulled me up. But Felipe was angry, angry and shocked.
Now the nine light boxes by Jeff Wall are hanging in a museum in France. I went there last week. Visitors admired the work, pointed to the faces of the children and the colorful sky forming the background. But when I myself looked at Little Children I mainly saw Felipe’s anxious face, his despairing eyes. I grabbed his hand, and for just a moment I felt the same strength I had felt a month before. Then we walked on. We had to go further.
Yesterday morning I decided we had to go to Bali. Immediately. Right away. At the moment I was on the treadmill, and if I had had my druthers I would have gone straight from the gym to the airport, with my wet training shorts and T-shirt under my arm.
I got angry when the young woman at the travel agency said she’s need a little time to arrange a few things, so I decided to book the trip with the agency that could respond to my impulses immediately. Within three days we would go to Bali. It was all settled.
A little while later doubt set in. Was this wise? And is it wise to be wise? There’s something to be said for giving in to impulses, of course, and for the immediate pleasure this gives you. On the other hand, the big advantage of being wise is that you have more time to enjoy the anticipation. And anticipation is also a form of immediate pleasure. You can dig into the anticipation right away, right here.
Felipe was not happy. That very week he had been given a job to restore a cabinet, and this was definitely not a good time for him to go away again. Finally I decided to postpone our trip a bit so Felipe could finish his cabinet and so I could make the most of the anticipation. That’s why I’m spending the day today changing everything I organized yesterday.
It’s all a little tedious. Non-thinking always involved extra work. I see it more as the aftermath of my sickness. Two weeks ago I was still feeling queasy every night. And every morning. That’s over now. Now I have to sweep up the mess that my impulses have caused. It smells better.
I hope other people aren’t bothered too much by the fragrance of my impulses. If they are, I offer my apologies in advance. Soon this side effect will be over, too. Then I’ll be back to my old self: wise, tranquil, think-first-act-later.
Was I ever like that? Look, I don’t even know anymore. And let’s hope that that not knowing stays that way.
Funeral on Bali
We’re going to Bali to bury all the after-effects of my sickness and to draw the recovery period to a close. I want to be better, and once I cover over the last symptoms and memories with sand they won’t ever be able to find me again.
We went to Bali once before, thirteen years ago. Or was it two? I’ve got a photo somewhere in which Felipe has his arm around me and is pointing to something that is making us both laugh out loud. Is it a photo, or a picture that lingers on by accident, a memory?
I was deeply impressed by the funeral during that last trip. They’re not gloomy events on Bali. I didn’t see any mourning clothes or long faces under the Indonesian sun. Funerals on Bali are colorful parades with lots of music, lively processions of chattering people bearing sacrifices for the gods and tasty snacks for the other guests. A funeral on Bali is fun; that’s the kind of funeral I want for my nightmare.
On Bali the spirits of the deceased live on. They come back to earth with a certain regularity, where they’re treated with respect because they still wield influence. The dead still get to keep plenty of fingers in the pie in Bali. I’m not sure that I would want to take over the work of all those dead fingers, but my nightmare’s spirit will certainly come to visit me every now and then and I want to treat it with the proper courtesy. It has a right to a certain amount of respect; it happened, after all. But it has to have a place where it can take a rest and not get into too much mischief when it goes haunting.
I’m not sure how to go about burying the spirit of my nightmare. That’s why I’m going to Bali. I’ve got to look around all over the island, especially at funerals, to absorb the customs and rituals so I know what to do when I get home.
But you never know, maybe it’s safer to cremate my nightmare right there on Bali in some remote spot. I’ll bury the ashes on the beach and cover the grave with a batik cloth − or maybe I’ll build a ritual platform like I’ve seen other people there do.
I don’t quite remember how they did it, and that’s why I’m going to Bali. I’m going to learn how to bury things.
I used to think there wasn’t anything dumber than people who didn’t know what kind of medicine they were taking. Not only is it dumb but it’s dangerous, too, not to know what you’re popping into your own mouth. What if something were to happen? Felipe and I used to laugh at people who could only say they were taking blue pills or yellow pills. I wrote little pieces in which I made fun of such people. Dumb as dirt.
Now I myself have become one of those dumb people. Only my doctor knows what I take − and Felipe. He’s now responsible for keeping my life alive.
Here on Bali I want to take the time to figure out what five medicines I take. We’ve set aside two weeks aside for this project, so there’s no rush. I’ve reserved a special suite at the Four Seasons Hotel, because you need plenty of room to memorize so much all at once. At first I thought the bare minimum would be a penthouse with a balcony and built-in swimming pool, but that seems not to be the case, unfortunately.
It’s been three days and so far I’ve learned the name of one pill. I can’t remember it all the time, you understand – just every now and then. After another couple of days I’ll know more. But I’ll have to rattle them off very quickly and in exactly the same sequence. Once I’ve learned all five, Felipe will want me to point to each pill and tell him what it is. But that wasn’t the agreement; that’s cheating. I couldn’t pin a name to a pill if you paid me a million dollars. I can only learn them by heart, the way I learned the Hogezand-Sappermeer Stadskanaal by heart, but if I were dropped in the middle of Hogezand I still wouldn’t recognize the place.
Felipe is unrelenting. Every day we practice together. Sometimes he holds my hand, the way you help a child cross a busy street − a street full of lost words.
After ten days I know the names of the pills and what they look like. There’s no relaxing on this vacation, that’s for sure. And in the evening, or if I haven’t practiced for awhile, the names all slip my mind. Then I ask for the blue pills and the white ones, and I tell Felipe to make sure he doesn’t forget the yellow and orange ones because they’re fantastic. They’re especially good for my memory.
The right button
We’re having lunch in the coffee shop of the Four Seasons Hotel. I sit down in the lounge and pick up my camera. Suddenly I turn to Felipe with a start, the way I always do these days when something startles me − that that’s very often.
“Felipe, I don’t know how this camera works any more. What am I supposed to do?” I don’t speak the words, but cry them.
Felipe looks at the camera. “I wouldn’t know. Just use it. It’ll all come back to you.”
Yes, maybe it would all come back to him. But he’s so much more technical than I am, and he hasn’t had encephalitis, either. I hurl the camera angrily into the corner.
But we set off, and every now and then I push a button, then another. Occasionally I turn something. That night we look at the results. The photos are strange: not ugly, but strange. There’s movement in them, speed − especially in the photos of the thousand-year-old statutes.
It takes me a while, but finally I understand why. I’m trembling. I always tremble. It isn’t the trembling and shaking that I had several months ago. It isn’t the endless earthquake from back then, but it’s not entirely calm, either. There’s always a little shaking, like the beginning of Parkinson’s, or like someone who feels extremely uncomfortable, as if he’s paying a visit to himself.
I refuse to let this stupid trembling get me down. I take the camera firmly in my hands, which causes such fierce shaking that the camera, bag and I all fall down together. “Oh, no,” I say to myself as I try to relax. “Go with the flow.” This has the same effect − I fall down. So I scramble back up, and the camera keeps ending up in various corners of the room. Then I start again. I just do it and wait to see what happens. I have no choice.
The advantage of a digital camera is that if a shot doesn’t work you can erase it right away. It takes a little while before I figure out which button to push, and after that it’s the button I use the most. But after a few days I come to the conclusion that images are less complicated than words. You don’t lose them as easily and sometimes they’re less confusing
But I’m still looking for the button that will let you record what you see without shivering.
Clouds of smoke
I wanted to go to Bali to bury my nightmare. What I didn’t realize is that the funeral had already started. Even before I get off the plane there are clouds of smoke issuing from my nostrils. The Singapore Airlines stewardess comes running with bottles of mineral water. “No, not fizzy, and certainly not cold,” I seethe. But no matter how many bottles of room temperature Evian she pours over me, the clouds keep steaming from my nostrils.
Once on Bali we drive from the airport straight to the funeral ceremony. That’s not easy because we arrive late in the evening and the ceremonies are at twelve in the afternoon, when the stars are favorable. The stars are invisible at noon the stars, but they’re favorable.
I see smoldering sacrifices, charred papier maché oxen, and I watch family members poke through the ashes in search of bones and lost spirits − but my nightmare is nowhere to be seen.
I decide to approach it a different way and suggest that we go to the little river where we saw Balinese bathing thirteen years ago. They came walking along with towels over their shoulders and cakes of soap in their hands.
We get to the place near the little river but there’s a Dunking Donuts there now, next to a Kentucky Fried Chicken and surrounded by three supermarkets with authentic Balinese art and twenty-three shops where they sell wooden figures made with the latest machinery. Almost all the shops are closed because there are no tourists on Bali. They’re staying away out of fear of bombs and smoke coming from the nostrils of certain tourists.
“I can’t bury my nightmare here!” I scream at Felipe, and I start stamping my foot. This turns out to be part of the ceremony, because before I know it a whole village is gathered around me, expressing the desire to help me with my funeral for a small fee. I can get married, too, if I prefer, but it’s more expensive. That’s because marriage is more in demand, even now that there aren’t any tourists.
I stamp my foot. Not only because I can’t get rid of my nightmare but mainly because I suddenly remember what it was like here thirteen years ago. I, who thinks he can’t remember anything anymore, suddenly remember what kind of soap the Balinese used back then: cakes of pink and light green Lux. I see the flowers again that the Balinese boys wore behind their ears, on the right if they were married, on the left if they were still free. I suddenly remember a little old woman who smiled before taking off her sarong and gliding into the water.
I’m angry because the past is contaminating the present. That’s a malady of the non-aphasiacs, isn’t it − something I haven’t been troubled by for a year now?
I’m angry because the spirit of my nightmare is gone, just when I wanted to give it a genuine Balinese funeral.
So am I back to who I used to be? There’s smoke coming out of my nostrils; that’s new. I’m holding onto that smoke for eight days. I’ll spend eight days snorting because things aren’t what they were. I’ll spend eight days ranting like a non-aphasiac about what I can’t bury because some of the ashes are gone.
Then we’ll take the plane to Kuala Lumpur, where I’ll fling my nightmare from the highest floor of the tallest tower in the world.
I’m walking behind my brother Victor’s bier. He died at age 31 of the same virus that I’m still successfully fighting against. Even now I still can’t help imagining that I’m here at the same time, lying on that bier. I feel the lid weighing down on me, I smell the suffocating air and rock gently to the rhythm of the pallbearers with their black top hats. In panic I turn and cling to Felipe. He gently strokes my head, and gradually it dawns on me: being in one place is hard enough, let alone in two places at once.
Today Felipe and I made love for the first time in more than a year. He had already tried a couple of times before, but I wasn’t ready. Not only had I lost the knack, but I didn’t want to pick it up again − such intimacy was fine for the person I was before I was sick, not the stranger I had become.
But today, during the siesta, when I thought he was fast asleep and my eyes were closed as well, Felipe turned over and threw his arms around me − not to carry me or comfort me this time, but to press himself against me. I felt his body against mine, and suddenly I was able to decipher the braille that was written on his skin. It was like one of those lost words whose meaning I had recovered at some unexpected moment. I was reclaiming something that had been stolen from me and I trembled − not from impotence this time but with the joy of reunion. Once we got started, with his mouth on mine and his hands in all the right places, it came back all by itself. It was easier than learning to walk again, but maybe that was because I was lying down and didn’t have to be afraid of falling over.
When we were finished and lay panting side by side, I turned Felipe’s face toward me and looked him straight in the eyes. Finally, after more than a year, I had come home.
“This cake is so delicious,” I say to myself as I make my way through the Sachertorte that I eat every afternoon at Escriba, the bakery on the corner. “I’ve never eaten cake as good as this. Even the chocolate curl is great!” I shout with my mouth full to Christian Escriba. He’s known this for a long time, but he loves to hear me say it, every day, at ten past five.
Because my memory isn’t what it used to be, it’s as if I’m experiencing everything for the first time. A plate of salad − wonder how that tastes? Sex − wonder what that’s like? Turns out I find both of them delightful, surprisingly delightful, especially when the dressing’s good. Fresh lettuce leaves with a little oil and vinegar, some salt and pepper and a few pine nuts − nothing like it. The same goes for sex. That’s also a question of pure ingredients. Not too much and not too complicated, to really bring out the flavor.
Not too many people get the chance to do something for the first time twice in their lives. It happens to me every day. When I start out on my morning walk with Ollie, which I’ve been doing every morning for the past fifteen years, I ask myself: what’s it going to be like today? And every morning I’m surprised when he pulls on the leash. Every morning I enjoy the trees on the Gran Via as if I were seeing them for the first time, and every morning I fill my lungs with air − as if I were doing it for the first time.
Every day I relish my chocolate cake as if I’d never tasted anything so delicious in my life, every morning I enjoy the colors of Paul Smith and Bernard Frize. I’ve never been in a plane before, and I squeeze the arm rest whenever we sweep into the sky. “I’m a virgin!” I shout, with the chocolate still on my lips as we slice through the clouds. A virgin for life, a virgin forever, every day for the very first time.
I’m looking at the photograph by Edwin Zwakman that I bought this week. It contains a breakfast table in an apartment in a new housing development. The table is covered with a blue-and-white checked cloth; a knife lies across one of the three plates; a crumpled napkin gives the impression that the inhabitants had to rush from the table to catch their bus – in their haste one of them left behind a sandwich wrapped in a plastic bag.
The morning sun casts a soft glow on the pack of rusks, the chocolate sprinkles and the orange juice; the apricot jam in the glass jar is almost transparent. On the window sill there are plants and a cactus shaped like a rabbit, an earthenware dove and a cat, also earthenware, and a glass ashtray. You can see the reflection of the living room in the window, and if you look carefully you can just make out the contours of the photographer.
The warm light, the orange doors with portholes in the houses opposite the apartment, the lace curtains, the chocolate sprinkles – it all makes the photograph so Dutch, so very Dutch.
But the breakfast table isn’t a real breakfast table, the apartment isn’t a real apartment; everything is staged. The living room and the walk-through dwellings opposite are a model, the light comes from a lamp, and everything that’s big is, in reality, small. Zwakman’s photograph is not what it seems; what’s real is fake.
Zwakman is mixing things up. I did that, too, when I lay in the hospital sixteen months ago. Every day a psychiatrist came to my bedside to ask me what season it was. It was snowing outside and there was a Christmas decoration on my nightstand, but I had no idea what month it was. I told the psychiatrist I didn’t answer such stupid questions and I saw the doubt in his eyes. He was wondering whether I really didn’t know or whether I was just refusing to say. It was quite a project, trying to obscure the truth by giving the impression that I was revealing it.
That’s just what attracts me about art: unwavering obscurity, confusion. You don’t know what it is you’re looking at, or you think you know but it’s really something else. The psychiatrist thought I was in the hospital because there was something wrong with my brain. What he didn’t realize was that he was witnessing a performance; he didn’t know that what was real was fake; he didn’t know that I was imitating Zwakman. I didn’t know it myself.
My work of art cost considerably more than Zwakman’s. Whether the value will increase with the passing of time is something I don’t know. In Zwakman’s case I have no doubt, no doubt at all.
But if you’ve forgotten everything, people ask me, if you really don’t remember anything from the past, how come you can recognize all those works of art – from a distance, with your glasses off? How about a little explanation, people ask me.
I don’t know. I mean I don’t know anything. I can only guess. I know there are some people who can no longer utter a single word, but they remember the words and melodies from every song they’ve ever heard. These are people who can’t talk or write, but they can sing like the best of them. That part of their brains has not been affected.
Maybe the same thing happened to me. All the parts of my brains are affected except the modern art part – that has remained unscathed. But it’s not the same as it was. I still think the same things are beautiful, but now I think they’re even more beautiful than before. I still like the same artists, but now I think they’re even better. The fact that I once bought something by Roni Horn and Bill Viola I regard as a stroke of genius on my part.
This is the only thing I can still appreciate, more or less, about who I once was. I haven’t the slightest idea what it was like – or what I was like. I can read my own pieces over again, but reading is hard. There’s a lot I don’t understand. Right now my own writing is too complicated for me. But works of art are different. I look at them and think, that’s magnificent. It touches my soul the way our dog Ollie does when he looks at me.
There are other bits of my brain that haven’t been affected, either. I still love the same people. Except now I love them much more. I’ve lost a lot, but what’s left over has increased in intensity. It’s the flip side of my fits of anger. I never thought I could get so angry about nothing. I never thought I could love people so much − so that I get tears in my eyes when I stand on the balcony and see Felipe in the distance as he comes walking home.
What’s left over is exactly like modern art; a great deal has been omitted, but what’s there is intensely present. Maybe that’s why I can recognize works of art, from a distance, with my glasses off.
“We’re going to play a new game,” said the speech therapist from the Aphasia Society yesterday. Because aphasiacs sometimes forget things, she thinks we’ve become children who can only be appeased with games. She wants all of life to be a game, even though we’ve just figured out that life is no game − at least not a game we can play.
At any rate, she had five memory games for me, one for each kind of memory. I no longer remember what games they were so I don’t remember what the five kinds of memory are. All I know is that most of those memories aren’t working doing their best in my case.
The game we began with, and never moved beyond (as far as I can remember), involved the speech therapist reading fifteen words out loud that I then had to repeat. Nose, garden, father, color and eleven more. After she’d read the list I could only remember one word: father. The speech therapist read the list once again. Father, color, nose. After a third time I knew coffee, geranium and radio, although the last word wasn’t on the list. By the fourth and fifth time I knew seven words, but none of the seven that I remembered the fifth time were among the words that I had listed the fourth time. So I do know all the words, but not all at the same time. Apparently they’re beyond counting.
I disagree one hundred percent with the rules of this game. I don’t agree with the rules of any game. In fact, I’m against rules in general. It really annoys me that I can’t say fifteen stupid words in sequence. It’s normal to forget one or two − but more than half just enrages me. I told the speech therapist that it was because the words didn’t have anything to do with each other. “What does nose have to do with garden?” I shouted angrily. “There’s no story in it. You can’t come up with any memory tricks to hold onto, and these days if I don’t have anything to hold onto I end up flat on my face.”
She said that’s what it was all about − that there was no connection and that I had to remember it anyway.
Why should I remember things that aren’t connected? I’d just as soon forget.
They do their best, these non-aphasiacs, but they can’t really understand you. Here at the Aphasia Society they’re pretty patient, but in real life it’s different. In real life people don’t have very much time. Sometimes they think we’re dumb, and often they find us annoying. I find myself annoying − the problem is that there hasn’t been any other Han available for such a long time that I have to make do with myself.
But I’ll have my revenge. I’m going to let the speech therapist haul out the same idiotic list of fifteen words during the next session. Then I’m going to make up a long story that contains every one of those fifteen words. And I’m going to make her repeat the story. She going to have to use all fifteen words, and I’m going to keep practicing with her until she knows all fifteen. And woe betide her if she forgets a single word.
Since the evil winter of 2001-2002 my past doesn’t exist anymore, and I’m not yet ready for the future. Living in the now has does have its advantages. Many Eastern philosophers and noted psychiatrists recommend it. It’s hard going for Westerners, though. Usually the now is all squeezed in between the past the future; there’s not much room left for the now.
For me it’s a luxury to wallow so thoroughly in the now. The annoying part comes when the past suddenly catches you unawares. That happened last week. I had an appointment with my doctor in the AMC. We were supposed to discuss my financial support of a program for AIDS research. There wasn’t anything medical about it, so I had nothing to fear. I hadn’t even made the connection between my body and the AMC that day. All that existed was the connection between the AMC and my wallet.
But my body had its own unique way of responding to the situation. I didn’t notice it until it was too late, when I entered the hospital. Suddenly my body decided it had had enough.
“Nonsense. We’ve got business to attend to here,” I said severely.
“No,” protested my body, “I’m only going if we stay close to the emergency exit, so I can escape if they try to keep me here.”
“They don’t want to keep you. That’s not what you’ve come for.”
But it didn’t help. First my body acted as if it had never been to the AMC before. It didn’t even remember the way, and it asked the lady at the reception desk how to get to Dr. Lange’s office − the office it’s been to fifty times before.
We got lost twelve times. I asked for directions at every corner but didn’t listen to the explanation. I got very angry with myself. How could I be so stupid as to make an appointment in the hospital, of all places? You’re just asking for it!
I crept past the emergency exist, stuck close to the doors and gave myself a good talking to: you haven’t come here for yourself, you’ve come here for the money. But I didn’t manage to convince myself. Whenever I saw someone in a white coat I went for a nose dive; my heart started pounding with every stethoscope that came into view.
My doctor wasn’t wearing a white coat, thank God. He was dressed like a normal person. That made me feel confident that my disguise as a healthy visitor was working, and that everyone would fall for it.
Then I remembered how I used to take our dog to the vet years ago just for the fun of it, so he gradually forgot that he absolutely didn’t want to be there. He lost his fear. What I have to do, then, is to keep going to the AMC just for the fun of it, to bury the unpleasant experiences with fun.
So I’m going back tomorrow. And the day after tomorrow, and the day after that. I’m going so often that I won’t know that I really don’t want to go to the AMC. I’m going there to bury the unpleasant past under the happy now.
I’m stretched out on the couch on our terrace in Barcelona, looking out to sea. The phone rings. It’s my doctor in the Netherlands. He has “less good” news: my T-4s have dropped again. It’s time to change medicines. Over the past ten years my virus has developed resistance to the medicines that are now available, but my doctor knows about an American trial involving the very newest medicine. He’s already sent my particulars to the United States, but I have to have to go to Washington myself to have my blood tested, preferably as soon as possible.
I don’t go back to the soft couch. Instead I stand at the railing of the terrace and look out over the Mediterranean Sea, which up until quite recently looked so endless and where the horizon shifted imperceptibly into clear blue sky. Suddenly now there’s a sharp black delineating line. I clamp my hands around the rails so hard that my fingers start hurting. Then I go inside to pack my bags.
Yesterday there was another Aphasia Society party. A couple of times a year, they − we − organize a get-together, a lunch or a kind of cocktail thing. This time it was a fall cocktail thing with snacks and drinks.
I was the only one not drinking Catalan champagne. All the other aphasiacs had glasses that were constantly full. You can’t see any difference between a sober aphasiac and a drunk one. An aphasiac wiggles and wobbles, gets words mixed up, repeats himself, gives you a groggy look and sinks into a chair. And that’s when he hasn’t had a drop of alcohol. After five glasses of cava he does exactly the same thing.
I came home in the very best of spirits. I was in good spirits because most of the party-goers are much worse off than I am. A large number of them can, after five years of intensive therapy, say three words and use two fingers. A large number of them are totally satisfied with that enormous progress.
I was also in the very best of spirits because I can talk aphasiac to aphasiac.
“What’s it like being an aphasiac?”
“It’s like ...” And then the other aphasiac sits down because he knows it’s going to take five minutes for him to come up with the right word. Usually he never gets to the right word, but he doesn’t have to: I know exactly what he means. Shitty is the right word. It’s downright shitty. But it’s a lot better than it used to be.
I was in the best of spirits because the other aphasiacs also have trouble reading and don’t understand what most movies are about, either. I’m a paragon of insight and balance compared with a number of the aphasiacs I tried to talk to yesterday. Every now and then I want to voice my outrage by shouting that I still feel so dizzy after a year and a half, but there are aphasiacs who have trouble taking three steps seven years after a heart attack.
I’m in the best of spirits because we all say the same thing: how is it possible that one minute we’re fine and the next minute our entire life is a mess, as if an earthquake has taken place. Our lives have collapsed, and the lives of most of the people around us. We shake our heads, because we still can’t believe it − after all those months, after all those years, we still can’t believe that this really happened to us.
Maybe we wouldn’t feel so dizzy if we started believing that this really did happen to us. Maybe we’d be able to walk a little bit straighter. This is reality and we’ve got to make the best of it.
Bit by bit
I bought a book. It’s not the first book I acquired during the past nineteen months. I did buy another book, but that was for reading lessons. That was required, so it doesn’t count. This time I just went out and bought a book.
The fact that I just went out and bought a book is extraordinary, but how I found out that the book existed is even more extraordinary. I read it in the newspaper, this morning. I didn’t read the whole article (it was more than four lines long), but I did read that there was a book out with interviews of writers. Confesionario it’s called, but of course I had long forgotten that by the time I walked into the bookshop. I asked for “that book about writers with photos scattered through it,” and the bookseller produced it as if by magic. He’s either clairvoyant or he has experience with aphasiacs.
I don’t know whether I’m going to read the book or not, but that’s not the point. As far as that’s concerned it wouldn’t be any different than the hundreds of other books on the shelves that I bought out of solidarity with the writers. These are gestures of good intention, and like most good intentions they only have symbolic value.
Every time I read something I get the feeling that I don’t entirely understand it. But I have the same feeling with everything. I do, I act − but I still can’t really comprehend it. I understand a sentence, an image can appeal to me, but the thing as a whole − the consistency that others appear to see − is beyond me. I see bit by bit, and that’s more than enough for me. What’s the use of consistency? What good does it do? Give me a beautiful word, a catchy sentence, something short and succinct that I can get my head around.
I look at the words and sentences as if they’re photos from a fashion magazine or an art publication. And even when I look at photos, I mainly see the bits: a button here, a sock there, the line of an image, the color of the background. I don’t know what it’s about and I distrust anyone who says they do, because − like other stupid people − I have little trust in what I don’t understand.
So I bought a book, and I hope it contains a couple of beautiful sentences, a beautiful word here and there. If I find them, I’ll read them twenty times and enjoy them. I get pleasure from a book. That’s new. I think. Because the same is true in this case: I don’t really remember.
I hurl the book by Sándor Márai across the room. “I don’t want to read!”
“But you can read, so why won’t you?” shouts the speech therapist.
“How should I know? You’re the expert.”
“Then let’s try something else.” The speech therapist takes out a thin book, a Golden Book with pictures of ducks in a pond. “Read this. Loud and clear.”
It’s a book about how important it is that others call you by the right name if you’re a duck. The words don’t get in the way here. I enjoy the drawings.
I ask whether the speech therapist has more of these duck books and plunk myself down on the novel by Sándor Márai.
There are twelve more Golden Books, books about ducks and puppies and pussy cats and bears and cows and calves − and tomorrow I’m going to read them all. Books for children up to age five are right down my alley. Anything more difficult is beyond me. Sándor Márai gives me a pain in the butt.
Why do I want something that I don’t really want? Is it a sense that I’m missing something? Is it because it feels like there’s a party going on outside, but I can’t see anything because the windows of my room are all steamed up?
I wipe the windows with my sleeve. I try to figure out what I’m seeing, but the glass clouds over right away and all I can see are moving spots and stripes.
Maybe it’s like my muscles. I have to exercise them, too, to make them strong again. I used to have muscular thighs. Now I have no thighs. I hover over my knees; I hang in the air. The physical therapist says my thighs will come back if I practice a lot. They’re coming back, because they’re still here.
It reminds me of those lotteries where you have to scratch off a layer from a little piece of paper to see if you’ve got the winning combination. I have to scratch to see if I’m getting my muscles back. I have to scratch to get my words back, my sense.
Tomorrow I’m going to buy a new lottery ticket. I’m starting with books about ducks and going on to puppies and pussy cats and bears and cows and calves, till I end up with Sándor Márai. The passion for Sándor is in there somewhere, I’m sure of it. It’s just a question of scratching the right place.
Yesterday I had a visit from a fellow aphasiac. We talked about aphasiacity.
“You can talk and you can walk. There’s nothing wrong with you. You just want attention.” It took my fellow aphasiac three and a half hours to say that.
“But if I wrap up that attention-getting nice and pretty, if I find an original form for it, does it count?”
“You don’t count.”
“That’s true. I have problems with counting. I can’t get any further than four.”
Then we went to have coffee at the bakery on the corner, because I still can’t make coffee.
It continues to eat at me, though. I finally found an identity for myself and I’m not allowed to use it: I’m a fake aphasiac. That’s the problem with my life. I’m in between everything and I don’t fit anywhere.
My fellow aphasiac told me he had a car accident thirteen years ago. I couldn’t talk for a long time and could only get around in a wheelchair. He’s only been able to talk and walk for the last two years.
“Do you get angry sometimes?” I ask him. “So angry that you can’t go anywhere in public?”
“I never get angry.”
“And do you ever forget things?”
“I never forget.”
“I forget almost everything,” I mutter, but of course I forgot what I always forget.
In the meantime I’m stuck between a rock and the hard place. My fellow aphasiac thinks I’m too good to go through life as an aphasiac. My fellow writers think I’m not good enough as a writer. My first book ended up in the remaindered bin at the local bookshop, my second and third books haven’t even been published yet. My fellow journalists never thought I was a real journalist, and I don’t think I have a lot in common with other gay men, HIV positives and Dutch ex patriates. The only person who thinks I belong is the lady from the bank. She called me yesterday to tell me they’re opening a special office for stinking rich people, and I’ve been invited. But that’s a club you don’t have to do anything to get into, and that’s too easy for me.
I’m looking for a club where I fit in completely, and I’m afraid that’s a club with only one member: me. I have a feeling there are lots of those me-clubs: six billion at the last count. But I may be wrong, though, because I never get beyond four.
Felipe is out on the balcony, oiling the teak chairs. I’m standing in the doorway.
“What was it really like, when the thing that happened happened?” Mexicans never discuss terrible things by name out of fear that they might happen all over again. It’s how they bamboozle the higher powers in charge, while the clever listener gets it right away. After twenty-five years I’ve got it down pat. “What was it like exactly, back then?”
Felipe puts the brush on the arm of the chair, stares into the distance and says, “Your father sat beside your bed every day. You didn’t say anything. Neither did he.”
I can see my father again sitting beside my bed in the semi-darkness, a big man who feels small in the dim room. He’s reading the newspaper, and every now and then he looks over to see if I may have given some sign of recognition.
Suddenly my stomach tightens up. I don’t want to allow this picture to take shape in my head. The retroactive pain I feel towards the worry and sadness of my father, Lisette and especially Felipe is still so raw that I can hardly take it in. It’s as if I had stuck a knife in their backs while sleepwalking. You can’t blame me. I couldn’t help it. But even so, I was the one who cause the wound. Every time someone starts talking about it I feel the scab being torn away, from their wound and from mine.
The worst part of it is that we can’t share this pain. It’s not the way it used to be, when Felipe and I could lay for hours in bed with our arms around each other. There are no more moments when we get lost in each other’s gaze and then interrupt it with an unexpected wink. Now when Felipe and I look at each other I avert my eyes. Shame, guilt, pity, helplessness − it all runs together. I want to comfort him. I want to make it all better. But I can’t. I’m no longer the one who comforts and makes better. The fear that I will no longer be that person makes me freeze.
“You sure that’s the right oil to use on these chairs?”
Felipe looks at me in surprise and nods.
I turn around and go back inside. I tried. I thought I could do it, thought I could know what really happened. But it was too much for me. I still haven’t mastered the pain.
The most beautiful in the world
Yesterday I went to the neurologist. I was carrying my brains under my arm so he could take a look at them.
He responded with immediate enthusiasm. “What a beautiful set of brains you have,” he said. “And you know what I think is most beautiful? There’s no sign of the big bad winter you went through. Most people still have a trace − a spot or a frozen bit or a hardened block of ice − but in your case there’s absolutely nothing.”
The doctor kept staring at what wasn’t there.
There were still a few things I wanted to tell him. I told him that I was doing better than several months ago, and that I had so many plans and ideas that it sometimes it made me a little dizzy. I told him that I wanted to carry out all those plans and ideas because I have no time to lose − I have to make up for those two lost years. “I’m in a hurry,” I shouted, tugging on the lapels of his white doctor’s coat. “I’m in an incredible hurry, doctor. That’s why I’ve come to you.”
I think I really wanted to say something else to him, but in view of his enthusiasm for my beautiful brains I figured this was a better idea.
The neurologist couldn’t take his eyes off my MRI scan, however. He hadn’t seen such a gorgeous set of brains in a very long time. It was a real treat. “You’re sure you don’t have a copy of this scan somewhere? I like to look at it, you see.” He blushed slightly.
“Don’t worry,” I said. “I just had 35,000 copies made. I’m going to mount them on every lamp post in the city, so all of Barcelona can join in the pleasure of looking at my healthy brains.”
I gave the doctor a copy and put twenty more on the table for his colleagues and family members. I got some pills for whenever I make myself dizzy. I didn’t have to pay for them; the neurologist said that the opportunity to look at such beautiful brains had been payment enough.
Or did he say something else? I’m not entirely sure any more. But I do know for sure is that I went whistling onto the street. I whistled and I sang, at the same time, because it was true − I’ve never seen such beautiful brains in all my life!
I still can’t get over it, the incredible results of my MRI scan. Everything fell within the limits of the normal. It sounds much more beautiful in Spanish: dentro de los limites de la normalidad. I fall within the limits of the normal. For the first time in my life.
The accompanying letter is lovely: a sleek, modern poem, with words that don’t rhyme but do have a catchy rhythm. But even lovelier are the illustrations, the photos of my normal brains. They’re mostly repetitions of the normal. And if you repeat something that’s normal, it’s suddenly not normal any more − it’s extraordinary, extra-ordinary. It reminds me of the photos about the power of repetition that I like so much, the minimal art that I pay maximum prices for. And this was cheap. All I had to do was lie down a minute and get an injection of colored fluid so my brains would show up nicely. It’s my work of art, my very own work of art.
So I’ve decided to shove Roni Horn and Thomas Ruff off the wall. I’m going to hang there myself with all my brain lobes that fall within the limits of the normal. Would the Central Museum be interested? Would it organize an exhibition of normal lobes? Even if not a single museum shows any interest, I’m keeping them. And I’m going to enjoy them. Every time I look at my own lobes with my own lobes, I’m going to enjoy them.
Today my brother Victor would be forty-five years old. What would he look like at forty-five? It’s hard for me to imagine him as an almost middle-aged man. For me he’ll always be a boy of thirty-one, a lost boy, a boy I lost.
I’m not a very sentimental sort of person. There were years that I didn’t even remember his birthday, when the day passed like all the others. But this morning I suddenly felt an enormous need to speak to him, to tell him for the zillionth time how I can still remember exactly what it was like the day he was born. I was staying with our grandparents in The Hague and I was playing outside “without a jacket” because it was a beautiful summer day. My youngest aunt, who would become his godmother, walked up to me. She was wearing a white dress with big red flowers printed on it. Her gold charm bracelet jingled as she grabbed the handle bars of my scooter and congratulated me on the birth of my second little brother. I still remember being so happy that I started riding my scooter as fast as I could, over the sidewalk, around the corner, down the street and back again. I told Victor that story every year on his birthday. It became a running gag between us − I always wanted to tell it to him again, and he acted as if he were hearing it for the first time, just to please me (and to please himself, too).
I can’t congratulate him anymore, of course. No more reason to. You congratulate someone because he or she has lived so many years and is marking it on that day. If the person didn’t make it, you can put a flower on his grave and mourn the fact that contact is no longer possible. But I’m not big on visiting cemeteries. Tombstones leave me cold.
The ferocity of my feelings surprises me, thirteen years on. But it’s not that they still surprise me; it’s that they surprise me again. In the last two years I’ve used Victor’s death as a test to see whether my feelings about the past have really disappeared. I would think about it and wait to see what came to the surface. Nothing. I could still clearly remember the moment in the hospital at three o’clock in the morning, the closed eyes that had just been looking up at me imploringly, the hand already growing cold. But I felt nothing. No sadness, no outrage, no longing. I could still remember it all, but it was as if I had heard it through the grapevine. It’s gone, I would think with satisfaction. The past has been erased for good.
I used to repeat the test on a regular basis, and to my great relief I found that it was still gone. Sometimes it was extremely awkward, having an empty hard disk, but that was the price I had to pay for the freedom of a now that was no longer stuck between the past and the future.
Recently I started worrying again about little things – a jacket that I shouldn’t have bought, a bit of writing that was long overdue, an explanation that could have been more nuanced. I worry about nothing; I’m beginning to be my old self again. I don’t let it go full throttle and just hope that it goes away. But since this morning I know it’s not going away any more. I cried because I missed Victor and because the anesthetic turned out to have been temporary. I cried because I’ve recovered. At least I did.
The bird I used to be
Two years ago, not-knowing was a liberation. It was annoying that I couldn’t read or do simple mathematics, or that I didn’t understand anything about films and television, but at the same time in the aftermath of my encephalitis my life stayed light and tidy. Only the present moment was real. I made no demands on myself. All I had to do was learn to walk, step by step, without falling over. Now I walk without thinking about it, as straight up as I used to and a bit more resolutely. I can read again and write and plan and organize. The only reason I don’t feel like my old self is that I can’t remember very well what my old self was like.
And I still don’t want to know. I cherish the illusion that all the stuff I learned is gone for good, like a computer virus erasing parts of a hard disk once and for all. Years of acquired twists and turns are gone; only the core remains.
That not-knowing wasn’t always practical, but I enjoyed traveling without baggage. I had a sense that I was moving faster without having that trunk full of old junk to drag around. Life in the now is the ultimate freedom, which is what every newborn baby knows. The idea that it’s never going to be any different is part of that freedom.
In recent months I’ve noticed, to my great astonishment, that I’m really getting better. The future is beginning to thrust itself upon me and often casts its shadow over the past. No matter how sunny I try to imagine that future, each moment that I’m there is a moment not spent in the now − and that’s a damned shame.
Longing is the engine that keeps us going, but it’s difficult to long for something that you can’t imagine very clearly. It’s easier to hanker for something we know well, something we’ve experienced personally. Two years ago I longed for the previous year, when I still knew everything and could still do everything. Now I’d very much like some of that innocence back − I long for my own virginity, even though the first wedding night is long past.
Wanting to hold onto everything all the time is exactly what used to weigh my life down so much, and once again I’m catching myself not only wanting to lay my hands on what is but also − and especially − wanting to lay them on what’s still to come. I want to feel the future; I want to possess it now before it happens.
Wanting to hold onto everything all the time turns my head into the narrowest cell. There’s no prison more claustrophobic than the one you build for yourself. Now that I’m standing on my own two feet again I look wistfully at the bird flying over my head, the bird I once was. I’ve got to make my peace with the lucky dog I’ve become.