NOTES ON A RECOVERED LIFE
NOTES ON A RECOVERED LIFE
Translated by Nancy Forest-Flier
And for my father and Lisette.
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
In October 2001 I was sitting at a sidewalk café in Barcelona, where I live. Suddenly the woman at the table next to mine began to tremble. And not just the woman: her table, the street and all of the Plaza Catalunya had been set in motion. Afraid I was going to fall over I grabbed the back of my chair. And then, just as if it were an earthquake, random incidents in my life began flashing before my eyes. It was like the Viewmaster my parents had given me forty years before after returning from a visit to my grandmother in Geneva. But instead of the Jet d’Eau and the Palais des Nations, I was treated to a haphazard series of snapshots from my own life, images I didn’t even know had been tucked away in my brain somewhere.
The trembling continued. My Dutch doctor blamed it on the HIV inhibitors I was taking. I had become an experienced pill-popper by that time. Since 1987 I had worked my way through seven different cocktails, and each new medicine had its own hidden charms: headache, insomnia or a rattled feeling, muscular pain, weakness, diarrhea or constipation, red spots on the skin or a yellowish-brown skin tone, as if I had just come back from a skiing vacation. But this was worse than usual. Like my doctors, I was convinced the culprit was the new cocktail I had started taking earlier that year. There were no alternatives, so I had only one choice: bite the bullet and make the best of it.
I often thought of my mother during those days, who had died three decades earlier at the age of forty-seven. For years she had struggled with cancer, and just as the Eskimos are supposed to have a hundred different words for snow, so my mother had a whole slew of ways to describe her fatigue − I’m done in, I’m bushed, I’m worn out, I’ve run out of steam, I’m too pooped to pop, I’m all tuckered out, I’m dead on my feet, and mainly: I can’t go on. In 2001 I suddenly understood how she must have felt, not having the energy to give her five children the attention they needed. That fatigue was a link that connected us through time; my mother and I had become allies. But it was a connection with a twist: I didn’t want to be like her − so quiet, so withdrawn, and afterward, at my age, so irretrievably gone.
Maybe that was why I resisted my own fatigue so much, a resistance that cost me every scrap of energy I had. I kept wanting to push things just a little further: ten more minutes on the stepping machine at the fitness center, thirty more minutes of writing, one more phone call, one more e-mail. And that’s what I did. I would step off thirty more calories, write another paragraph, call a friend in Mexico, send a response to a gallery owner in Iceland − the way my mother would push herself to take me into town to get a new pair of shoes and my brother to the park to feed the ducks. And like her I’d end up in bed an hour later, sick to the stomach and my head bursting with pain.
In the summer and fall of 2001 I tried to restructure my fatigue with a Zen exercise of my own devising. Sometimes I was able to find rest in the lack of strength, but usually not. My head was full of cotton balls, steel cotton balls. And each week it got a little worse. There was less and less energy left for writing, seeing friends, expanding my art collection, visiting galleries, art shows and artists’ studios and maintaining contact with the museums where my work was out on loan. The Zen attitude turned into total exhaustion. I lay on the couch, and most of the time I didn’t even have the energy to change the video.
But I was determined to keep going. In August my friend Felipe and I took a trip to Laos and Myanmar. It swept past me in a flurry of images, with only scraps remaining like distant childhood memories. When I got home I tried to work the notes I had taken during our trip into short sketches. I even hoped to write a novel and a novella, but after fifteen minutes of typing I would often have to lie down and gather enough strength to put my next idea on paper.
I wrote about the headaches, the muscular pain, the general weakness, the tingling in my fingers and feet and around my mouth, the metallic taste, but mainly about the fatigue, the vulnerability it gave rise to, the idea that I was becoming someone else. I wrote about the physical changes: the sunken cheeks, the skinny arms and legs, the shrunken butt, the tummy, the fatty build-up between my shoulder blades, around my neck and under my chin, the high cholesterol level. I tried to keep myself going with the idea that it was just my age. At the same time I thought, Oh, come on, other people are getting older, but I’m still young and I only have side effects to contend with.
My blood was tested but everything looked perfect. The HIV virus had been suppressed and was too low to measure. In the meantime I kept trying to write. It was as if I had emptied out my desk drawers and cabinets of everything valuable and put it all in a trunk. All that was left were bits and pieces, fragments of a fading life. Without knowing it I was getting ready for a journey − but I had absolutely no way of knowing where that journey would take me.
And then, on that October day, the trembling began. First it was barely noticeable, as if I were standing in a gentle breeze. But gradually it became more intense − not only did my head pound but my whole body shook, as if I were standing next to the boiler of a gigantic freighter. In November, when I told my Dutch doctor about the trembling and the persistent paralyzing fatigue, he told me to stop taking my medication without delay. He suspected that what I had was a serious form of medicine poisoning, a poisoning that could be fatal. For the first time in more than fourteen years I discontinued my rigid routine, which involved taking medicine three times a day at exactly the same time. I thought I would start feeling radically different − that the real me, one that had not been deformed by side effects, would come to the surface. But nothing could be further from the truth. The symptoms quickly grew worse. A fog formed in my head that separated me from the reality around me. I was too tired to worry about it − all I wanted to do was close my eyes because the light in my room was too harsh, even with the shutters down.
In early December we moved. It literally passed me by. While Felipe and a girlfriend of ours gave the movers packing instructions, I stayed in a hotel opposite our new house, the house that I wouldn’t enter for the first time until three months later.
By December 7, a few days after our move and two months after the world had started trembling at the sidewalk café, I was practically unable to speak. Walking upright was also something I could barely manage anymore. Felipe called Joep Lange, my doctor in the Netherlands, and he got on the next flight to Barcelona to take me to the Academic Medical Center in Amsterdam.
Now I’m in good hands, I said to myself on the way to the airport. Now everything will turn out all right. But the doctors had no idea what had gone wrong, so they didn’t know what to do to turn things around.
Within a few days my condition had deteriorated noticeably. I was hardly aware of what was going on around me. The doctors were afraid I had a brain tumor, but after a week of extensive testing they came to the conclusion that I was suffering from a reaction to the sudden withdrawal of medicine: my brain was being bombarded by the HIV virus. This bombardment had resulted in encephalitis, a life-threatening inflammation of the brain. Encephalitis is not uncommon in the last stages of AIDS, but with today’s HIV inhibitors it rarely occurs in the West.
I was totally oblivious to everything. When Lisette, my father’s wife and my loving third parent for more than thirty years, told me there was good news − that I didn’t have a brain tumor after all − I started to laugh. What did she mean? Was there something wrong with me?
I was as ‘demented as a loon,’ to quote my doctor. For weeks I teetered on the brink of death. But then the tide turned, and the period of recovery began.
It was as if my hard disk had been erased during those few weeks. I could hardly remember what my name was. I couldn’t eat, drink, go to the bathroom or take a shower without help, and I couldn’t dress myself. Whenever I put my feet on the ground the floor would start to spin and I would lose my balance. Everything I had once taken for granted had to be learned all over again. Walking is complicated when you no longer know what leg to start with and then what to do with the other one. Eating a cheese sandwich was an impossible challenge: not only did I lack the strength to cut the bread into pieces and bring the fork to my mouth, but I didn’t even know where to begin.
But that was nothing compared with the powerlessness I felt because the words had gone into hiding. I knew they were somewhere in my head, but I couldn’t get to them − the harder I looked, the more confused I became. The words that did rise to the surface weren’t connected to any particular image. They were words without meaning, as if they were from a language I didn’t speak. “Wednesday” meant the same thing as “buttermilk,” “pillow case” was “strawberry jam.” My head was empty. Every now and then I’d hear an echo, but what that echo was I really couldn’t tell.
When I was released from the hospital in February 2002 the neurologist said it would take a couple of years before I was my old self again. I nodded, but I was convinced he was wrong. Maybe it took other people with aphasia that long, but I was going to be back in shape in no time.
As it turned out, my doctor was right. It took at least two years before I could function reasonably well, and even now, more than five years later, there are moments when I can no longer remember the name of the friend standing next to me. Every now and then when I arrive at an airport I have to ask myself where I am and what I’m doing there. And sometimes I can’t recall the face of the person I’m speaking to on the phone. All these incidents happen sporadically enough that I can reassure myself with the thought that it’s my age, and that other fifty-three-year-old people struggle with short-term memory loss, too. It has nothing to do with the moment the HIV virus affected my brain, turning me from an adult man to a two-year-old child from one week to the next. “The past is over,” I say out loud to myself at times like that. “It’s over and done with.”
But if that’s true, why do I keep crossing to the other side of the Herengracht when I get close to the hotel where I spent a month after my stay in the hospital? Why do I no longer eat the bakery-fresh muesli buns that once kept me alive for months? And why does it take so much effort to read what I wrote five years ago?
Even before I could really talk again I crept back to the computer. I wrote in a trance. My fingers were being sucked toward the keyboard. Most of the time I didn’t understand what was appearing on the screen, even though I had written it myself. Reading was a trial. Sometimes I would re-read a sentence, but by the time I got to the end I had already forgotten what was at the beginning.
It reminded me of my first weeks after moving to Mexico in the summer of 1978. I didn’t speak any Spanish, but I very much wanted to participate in the life there. Every morning I bought a Mexican newspaper at the stand on the corner of the street where I had rented an apartment, and I went to a sidewalk café to read it. I understood some of the words, but what all those words were doing together in a sentence was anybody’s guess.
That’s just the way it was during the first eighteen months of my recover. I understood most of the words I had written; I just had no idea why I had put them together in a sentence and what I was trying to say. It was like being two people in one: someone who was trying to hold himself together by hook or by crook, despite the shaky legs and the apparently slanting streets, and someone else who stood back and wrote about it like a person under hypnosis. As soon as I stored my writings in my computer archive, the sketches I wrote and the observing person were gone.
Now, more than five years later, I’m back to my old self as far as the outside world is concerned. But for me there’s a difference. A number of things that disappeared during the bout of encephalitis − fears, inhibitions, bad memories − are gone forever. I’m now less afraid and extra enthusiastic about doing what I think is important: writing, giving good art a chance and doing something for my fellow HIV sufferers who have no access to the medicines that have saved my life.
There are still two opposing forces wrestling within me, even after the passing of five years. On the one hand I’d really like to forget the entire episode. I don’t want to talk about it anymore or think about it anymore; I want it not to have happened at all. I cough uncomfortably when my youngest sister tells me I didn’t recognize her when she visited me in the hospital, and I look away when a friend says it’s unbelievable that I’m completely recovered. At the same time I realize how special it is to be one of the few who have returned from this long journey to a desolate and unknown land. Most of my fellow travelers are not able to recount their adventures, but not only have I learned to read and write again but I can also tell it like it was. The price of this restored ability is that I actually have to do it, no matter how difficult it still is for me to write these words and − a hundred times more difficult − to re-read them.
It’s incredible that I’m still here, something I fully realize every single day. Sometimes I miss those first years of recovery, when I was living completely in the present moment. I was free as a bird back then, and I remember it with a faint wistfulness. Now I know I’m just a lucky dog. I’m living on borrowed time, and writing this book is the interest I have to pay. It’s worth every cent.
The kindness of friends
The hospital room is full of people. They’re sitting in a circle around my bed, doing their very best to keep the conversation going. They ask me how it’s going, but it doesn’t sound like a question. They already know my answer: stubborn silence.
A roomful of visitors, I say to myself, all of them here for me. I’ve really got to make some kind of contact. But what do you say to a roomful of visitors? I ponder this a moment but nothing comes to me. Absolutely nothing.
“It would be so nice if we just knew what was going on inside his head,” says a worried friend, pulling up her chair so as not to miss any first word I might utter.
“If there’s anything going on inside it at all,” says another friend.
Bitch! We can strike her from the visitors’ list. She’s too clever by half. There’s nothing going on inside me. And if anything was going on inside me I wouldn’t know it, let alone be able to talk about it.
One friend sighs. Another one coughs. Yet another whispers something, very hushed and respectful, the way you do in church or in a museum of modern art.
It occurs to me that I really should say something - to help them, poor souls. But that’s all that occurs to me, and I’ve regained just enough of my wits to know that that’s the one thing I shouldn’t say. So I don’t say anything.
“They seem to be aware of their surroundings. That’s what they say about people who’ve been in a coma for months, too,” says the friend who isn’t allowed to come here anymore. “They do appreciate it.”
The others nod. They’re not allowed to come here anymore either. So it’s a good thing I don’t say anything. If I were to say anything they’d all be back tomorrow.
One thing I know for sure: if I get better − when I get better − I’m choosing different friends. Friends who don’t come to see me when I’ve got encephalitis. Friends who know there’s only one way to respond to silence, and that’s to show solidarity by keeping your own mouth shut.
Every morning a doctor comes to my bed to ask me several questions. He’s trying to figure out if I’m demented or not, based on my answers.
“Do you know where we are now, Mr. Nefkens?” he asks.
“In the AMC.”
“And where is the AMC?”
This is a trick question and I’m ready for it. If I don’t know where the AMC is it’s proof that I’m certifiably demented. “The AMC is in the AMC.”
No argument there. Even so, the doctor still isn’t completely convinced. “Do you know what month it is?”
I pull a face as if I’m opposed in principle to answering such dumb questions. But the truth is I have no idea what month we’re in. The Christmas decorations on my night table don’t help at all. The New Year’s card doesn’t help either. Even when the doctor points out that there’s snow on the ground, I still haven’t got a clue what season it is.
The doctor isn’t good at keeping secrets. At the end of what he calls a conversation he tells me it’s December, that tomorrow will be New Year’s Eve and that it’s snowing outside because it’s winter.
The next day he asks me exactly the same questions and I still can’t give him a single answer. Once again, none of my lights go on at the mention of December 31st, Christmas and winter. The doctor could just as well have said that it was beets − the 31st of Beets − and that the next day we’d be celebrating Carrot Day, and that this was the season of goldfish. It all would have meant the same to me: that is, nothing.
It’s unreal when your own language has become a foreign tongue to you, when words like “New Year’s” or “winter” don’t ring any bells in your head. It’s strange when words lose their meaning, when you no longer recognize the word “word” and the word “meaning,” when “word” might also be a thing you eat your soup with, and “meaning” what you wipe your butt with when you go to the bathroom.
It’s strange to try to imagine what something is like when you don’t know what it is. How do you imagine nothing? Kind of empty and bare. That’s what it’s like − empty and bare, but restless at the same time.
Father on the phone
“Your father is on the phone.”
The nurse presses the receiver into my hands. I look at it with astonishment. What am I supposed to do with this thing? She raises an imaginary phone to her own ear and nods to spur me on. I follow her example.
“Hello Han, it’s your father.”
I don’t understand what this is all about, and I lower the receiver. The nurse picks it up.
“Your son is right here. I’ll put him on.” She presses the receiver to my ear.
“Hello, Han, your father here. How’s it going?”
I stare vacantly at the nurse while my father does his best to talk to me.
She takes over the receiver. “Your son really is here, Mr. Nefkens. He’ll say something in just a minute.”
I’m given the telephone once again and hear my father call, “Han, it’s me, your father. Han, can you hear me?”
I drop the receiver.
“Your son isn’t quite up to saying anything right now. I’m sorry, Mr. Nefkens.”
From far away I hear my father calling my name. The nurse takes the receiver and hangs up.
I’m suspended above the breakfast table in the house where I was born. My mother picks me up so we can wave good-bye to my father through the window. He laughs and waves at me with his hat. Then he gets into a big black car. My mother presses her cheek against mine. She’s grabbed my hand and is making waving motions with it. I see the red flowers on the rusk tin next to the butter dish. For years I’ve been looking for that very same rusk tin, but I’ve never been able to find one.
It’s all bullshit
The nurse is standing in a corner of my room, organizing my daily medicine into little containers. Nine for right now, four for two hours from now and fifteen for this evening.
His fellow nurse is looking on.
“What exactly do you say to someone who’s been lying in bed for weeks and doesn’t open his mouth?”
“Oh, I just say whatever comes into my head. It’s all bullshit, but he doesn’t care.”
I blush with vicarious embarrassment. And then I know: I’m starting to get better.
It’s all awful, but the mornings are the worst, the early mornings. You can hear them coming, those mornings. They rattle and jingle and let you know that you’ve got a whole day to get through. They come to wash you in the mornings. Or they come to tell you that they’re going to wash you soon. That’s the worst − not the torture, but the announcement of the torture. The preliminary pain, the pain that comes before the pain itself.
You just lie here and wait till it’s over. All over, for good, without your being dead. That’s what you wait for.
There are various events that mark the passing of time. They’re like milestone that the waiting is attached to. Being woken up is one milestone, getting washed is the next one. Another milestone is breakfast − in my case a useless milestone, since the breakfast is put down in front of me but I can’t eat it myself. So I have to wait until a nurse comes to feed me. But they’re much too busy knocking off the milestones to feed me. The breakfast has to sit there for a while, until the cheese starts to sweat and the edges of the bread get hard. Just when the breakfast isn’t good anymore, when it’s too soggy to eat − that’s when it’s time to feed me. A bite for daddy, a bite for mommy, a bite for Han who’s forty-seven.
But age doesn’t mean anything anymore either. It’s just another milestone, a useless milestone that time gets hung on. It’s a soggy sandwich, sweating cheese. I’m forty-seven, but there’s no difference between me and a twelve-month-old baby. I’m just as helpless and I know just as much.
So I wait. For the next minute. The minute when the preliminary pain stops and the real pain starts, so I can wait for the minute when the real pain stops.
Lisette tells me that my youngest sister has had her second child, a boy named Lucas.
I look at her. I know she’s telling me something special. I can see it by the look in her eyes. She’s brought her face up close to mine and holds my hand as she tells me. “This is just the sort of message that you’re expected to respond to,” I say to myself, but I have no idea what it means or what the appropriate response is.
I try to say the name. My lips move, but no sound comes from my throat.
Lisette smiles and presses a kiss on my cheek.
Every morning I’m on the lookout, sitting up in bed and waiting for Felipe. He’s the only one I talk to, in Spanish. He comes at around ten o’clock with molasses waffles, oranges and muesli buns. Most of the time I can’t even remember my own name, but the only muesli buns I’ll eat are the ones from the bakery on Runstraat. One time Felipe came with buns from Albert Heijn, but I pushed the package back at him: Albert Heijn no, Année si!
When I finish my muesli bun, Felipe pushes my wheelchair through the entire AMC. The medicine makes me itch all over, and I’m restless − riding around is the only thing that helps. An hour and a half later and completely out of breath, he rolls my wheelchair back to my room and asks me what I want to do now.
“Ride, but a little faster than just now because my legs are itching again.”
Felipe sighs, grabs the wheelchair and pushes me toward the elevator. We haven’t done the fourth floor yet today.
They’re standing together in my room: my brother from Curaçao and my best friend from New York. They’ve known each other for more than thirty years but they haven’t seen each other in a long time.
I can talk a little now, and I remark what a coincidence it is that they’re both in the Netherlands, just when I’m here in the hospital.
They look at each other with surprise but don’t say a word.
Every day they drop in, for weeks, until I’m released from the hospital. That very day they both leave. And I continue to be amazed by the coincidence.
The car pulls out of the AMC grounds. I start crying, but I have no idea why. We drive to a chic hotel on the Herengracht where I’m supposed to recuperate until I’m strong enough to travel back to Barcelona. As Felipe fills in the forms I throw my arms around the surprised receptionist’s neck.
The pleasure doesn’t last long. Suddenly I’m scared to death of water. I refuse to take a shower and I refuse to drink. Felipe is at his wits’ end. I have to take my medicine, it’s my only option. If I skip a dose I could become resistant, and there are no other medicines available.
Felipe pleads with me to take my medication. But I − who have been downing my daily pills punctually with the discipline of a Prussian soldier for fifteen years − shake my head. I don’t understand why he’s making such a big deal out of this. After all, there’s nothing wrong with me. With tears in his eyes Felipe explains that I’ll have to go back to the hospital and be re-catheterized if I don’t take my medicine right now. I look at him and start laughing uncontrollably. I don’t know why. I don’t even know that what I’m doing is laughing. Felipe shuts himself up in the bathroom, after which I hear noises that sound very much like my own laughing fit.
That afternoon I’m re-admitted to the AMC.
I have to pee, so I climb out of bed. When I get to the middle of the room I stop, next to the bathroom door. I know that peeing and bathroom have something to do with each other, but I can’t remember what it is. I also don’t remember how you’re supposed to pee. I’ve done it before, I’m almost sure of it, but what the exact procedure is I haven’t a clue.
The pressure on my bladder is mounting. I squeeze my knees together and pace back and forth across the room as best I can, grabbing onto the bed and the chair near the table. I stand there for what has to be the good part of an hour. My bladder hurts, my legs are shaking and I don’t know what to do.
Just as the nurse walks in, after I called for her half an hour ago, I can feel the pressure on my bladder disappear and my pajama pants becoming wet and soft. Drips run down my leg.
My release from the hospital is being postponed for the time being.
I’m standing in the bushes on the playground, gazing at my classmates. They’re laboring over a dictation exercise. I’m not playing hooky so I can take a stroll through town or go to the pool. I want to look through the window at my classmates. I want to know what it looks like from the outside.
The teacher says something. I can’t hear her. I can only see her lips moving. She articulates with exaggeration, as if she had a bunch of deaf mutes in front of her. The children are bent over their notebooks, a class full of strangers − although I know each one’s name − and a strange teacher. Now that I’m out here looking in, the strangeness isn’t so bad any more. The bad thing is being in there among them and knowing that I don’t belong.
We come home to an apartment full of crates and boxes. In December we had no time to unpack − five days after our move I was so sick that I had to be rushed to the AMC.
Now, three months later, I’m lying in a darkened bedroom (I still can’t tolerate light very well). Felipe is unpacking the boxes with the help of a girlfriend who came here from Mexico to give us a hand.
“Forget about the boxes,” I shout from the bedroom. “I want all my photos and paintings on the wall now, right away.”
I already know where everything has to go. Felipe and Ingrid have been at it all day hanging up the Bernard Frize, the Zandvliet, the Shirin Neshat and the Jörg Sasses. When they’re done, I’m satisfied. They can leave the boxes. All I need is my art.
I don’t want to talk about what happened. Nothing happened, so there’s nothing to talk about. But sometimes Felipe tells me something. Like yesterday, when we were sitting on the balcony of our apartment with our dog Ollie at our feet. He told me that one time I got up in the middle of the night, put on my jacket over my pajamas and walked to the hospital entrance. There I got into a taxi.
Just before the taxi drove away someone on the ward sounded the alarm. The night watchman was just able to get me out of the car.
Where would I have ended up if the night nurse hadn’t discovered half an hour later that I had escaped? What language had I spoken to the cab driver, what address had I given? Where would I be today?
I didn’t slip in the shower this morning, I tottered. I had to grab onto the soap dish, and I thrashed around a few times, but I didn’t fall. That’s the big difference between now and five months ago when I couldn’t shower by myself, couldn’t dress myself, couldn’t feed myself, couldn’t do anything by myself. And there’s a world of difference between now and ten months ago, when I’d jump under a cold shower after my morning training session, all fresh and ready to write.
My life was stolen from me the minute I turned my back. I continue to marvel at how smoothly everything once ran and how awkward it all is now. It’s not only the practical awkwardness of not being able to do so many things, or only being able to do them badly. I miss the support of the good old routine that got me through the day. I used to draw strength from the most insignificant activities. I could take the world on when I went for a walk with Ollie to buy a newspaper at the stand on the corner and to pick up fresh baguette from Escriba the baker. The ritual of reading the newspaper with my cup of green tea and turkey sandwich with avocado − three slices, every morning − imparted a sense of tranquility and trust to the day. Now before I go out on the street I have to overcome the fear of falling. I can’t prepare my own breakfast and I can’t read. I’ve lost the comfort of my routine, and there’s nothing to hold onto anymore. I’m lost in my own world.
I’ve got to re-conquer everything inch by inch. Nothing happens automatically. It’s hard to find satisfaction in re-learning something you could do a year ago, something you took for granted.
Taking things for granted. Even saying that requires an enormous effort now.
Training, taking cold showers, writing, reading, enjoying my food, walking upright without tottering – I miss my old life. I miss my life. I miss myself.
Grains of sand
I have to ask Felipe: where were we a year ago? He answers, we were in Vietnam and Cambodia. And Bangkok. I steal a glance at the papers to see if he’s right.
It’s as if part of my life had been swept away, as if entire files had been erased by a computer virus. Felipe talks about what I said and did, but he might just as well be speaking about someone else. It’s totally foreign to me. It’s got to be in there somewhere, but I can’t find it. At the same time, the computer virus has invented different files. So what’s real? And if the files that seem real aren’t real at all, what about me is real?
If you don’t have your memories anymore, then each moment is on its own. It’s totally disconnected from the preceding moment, even though it issues from it. But moments on their own have very little meaning; they only mean something in relation to what happened before and what is yet to come. They acquire meaning from the person who imposes meaning on them. For me, all the moments now are individual grains of sand that don’t form a beach but a chaos of grains, a confusion on which I’m trying to impose meaning. I’m not having any luck, and my own life is slipping away.
Felipe looked it up on the internet. We’re going to a meeting of the Aphasia Society, because aphasia is what I have. That’s why I almost never talk. That’s why I don’t understand the meanings of words. That’s why I can’t read, not even a short newspaper article, not even the writing on the package of cornflakes, and that’s why I can’t understand any films. I see the moving images, but I don’t understand what the one image has to do with the other image. After three minutes of watching TV I get bored.
Felipe takes me to the Aphasia Society meeting. He does all the talking and answers the questions about what exactly happened to me, about what shape I’m in now.
At the end of the conversation the fat woman says, “I haven’t heard Han himself yet. Do you want to come, Han? Do you want to learn to talk and read?”
I nod, but I realize that’s not enough. And with a hoarse voice I say, “Si, quiero. Yes, I want to.”
My head has turned into one big Swiss cheese that consists mainly of holes. It’s pretty empty up there with all those holes. It’s windy. Drafty. You’ve got to eat your way around the holes if you want to taste anything, and that’s the tricky part. Because each time I end up with another mouthful of nothing.
My speech therapist says that the cheese grows around the holes. The holes stay where they are but the cheese paves a new road for itself. That’s easy for her to say with her Gouda head – a head without holes. “If you just practice enough the cheese grows all by itself,” she says, and she shows me those three pictures and asks me to make up a story about them. A shovel, a croissant and a pink garden hose. If I can just see the connection among these three things, my Swiss cheese will grow back together all by itself.
I’m on the beach and I eat six croissants, so I can take my shovel and the pink garden hose and build an enormous sand castle.
“You see, it works,” cries the speech therapist, lisping from pure emotion. I feel my cheese growing. The holes are shrinking by the day, bit by bit.
Standing in my shorts and yellow striped shirt on the grassy vacant field in front of our house in a quiet Rotterdam suburb, I’m watching a plane fly over. I’m trying to imagine that I’m in that plane, that I’m looking down and fantasizing that I’m a little boy looking up. This puts me in two places at once. I know I can do this, I’m positive, if only I try hard enough.
“You’re exactly the same as you were before it all happened, before you got your wires crossed,” says the speech therapist who’s teaching me to talk again.
“That’s odd,” I say to myself, because I don’t feel the same at all. I feel like a different person, a stranger. The person who could read and write, the one who strung words together and saw new connections in them – that was me. Not the person who’s sitting here and taking everything in with utter amazement.
“But how are you so radically different?” my speech therapist asks.
I have to think about that one.
I’ll only be the same again when I can say in words why I’m different. But before I can find those words, the forty-five speech therapy minutes are up.
Only when I see the speech therapist’s pictures do I realize how much I don’t know anymore. That instrument with a hook is used to catch fish. You put it in the water, and when you have a bite the fish tugs on it. But what’s it called again? It’s a fish instrument, but it also has a name.
A lot of things don’t have names for me anymore. They have a function − I know what they’re for and I can write about it at length. But there’s that one word, and I’ve forgotten what it is. Actually, “forgetting” isn’t the right word. It’s not forgetting. I just can’t get near it. It’s like lending something, but then the other way around. It’s gone for a little while, but it’ll be back soon. My whole day consists of waiting for things that have been lent for a little while to come back by themselves.
The speech therapist has a pile of photos of things that come back by themselves. There’s a thing with pincers that you use to fasten your belt with, and there’s a mountain of soft stuff that makes me sneeze, even without knowing its name.
I propose that in the meantime we take a break and do something else. A head full of things that aren’t quite there but are coming back soon is boring. I propose that we read something. I’ll read aloud, and as long as I read what’s there I can keep on reading. That sounds less empty than the things that are out on loan.
The speech therapist thinks that my wanting to read is a good sign, so she picks up a thin book with very large letters. It’s called the King’s Magic Wand. You shouldn’t start off with something too hard, she says. She puts away the pictures for the next time. There will be plenty of opportunities to practice.
The wrong word
Talking is a trial. Walking, adding numbers or remembering − everything I have to do but can’t − is cruel. Writing is a comfort. But with all those vanished words, writing is like playing on a guitar without strings. I can only rap out a rhythm like a drunken gypsy, beat time without being able to keep up with it myself.
The words that appear in place of the vanished words are the wrong words. I’m a man with the wrong word in the wrong place.
Sometimes someone tells me what I was like back then. Not so great, I gather. It’s like hearing a story about the war, a story about a time before I existed. I feel sorry for the people who lived through the war. I try to imagine what it was like. But it’s not my experience. It didn’t happen to me.
I don’t tell them that I feel sorry for them. I still don’t talk very much. Writing is easier for me. When I’m at the keyboard, the words escape less easily than when I pronounce them. When I talk I have nothing to hold onto. I get to the middle of the sentence and forget what I wanted to say.
Felipe talks about my hospital period, about what it was like. I ask him how many people I shared the room with. “First there was no one else,” he replies. “For the first six weeks you were alone. And then there was another gentleman.”
If he were to claim that I had shared a room with twelve dwarves, I’d believe him just as much. Of course what I really wish is that he’d say, “Hospital? What hospital? I don’t know what you’re talking about. You’ve never been in a hospital in your life.” All I’d have to do then is wonder why I get such a strange feeling in my stomach whenever I get anywhere near the AMC.
Whenever I tell myself that it did happen to me, that I did fight my own war, I get very angry. “Don’t lie like that. It’s so morbid,” I say to myself. “I can’t believe a word you say, and I’m not going to listen to you until you speak the truth.” I put my fingers in my ears and refuse to listen. I don’t want to believe myself.
But every time I notice that it’s not going well at all, when I sway and totter, forget something, lose my way in my own house, in my own head, whenever I have difficulty reading, then I get angry. Seething. Because each time it’s new proof that it really did happen. And I don’t want that.
I don’t remember how many people I shared a room with, and I don’t want to know. When I do find out and don’t get angry anymore, I’ll know I’m doing better. Then I’ll be able to go back to ordinary writing about fashion magazines, about a non-existent Dutch neighbor and a non-existent Catalan president who wouldn’t allow the air conditioning to be turned on. When I no longer get angry I’ll be able to make up stories and spin a good yarn. Until then I’ll have to be satisfied with what really happened.
Until then I’ll have to be satisfied with what I don’t want to believe.
I’ve never had this before, wondering whether I’m crazy or not. I used to be nuanced in my thinking. Everybody has a little of this and a little of that, I used to think last year. It’s absurd to put a label on it. And who wants to be like everybody else? I was convinced that I wasn’t crazy, and I decided that everyone who thought I was crazy was nuts himself.
Now I’m not convinced of anything anymore. Now I wonder about everything, even about my own mental health. I’m not as stable as I used to be. But I was always this way, except that in the past I could hide it better. I kept my entire existence under tight control, and all my attention and energy were focused on maintaining that control.
I don’t do that anymore. I can’t, for one thing, and I simply don’t want to. I’m leaving it as it is, and everything inside is coming out. It’s a messy, chaotic business, and for everyone around me it’s mainly an overdose of Han. For me, too. But it’s all there is, and I insist that it’s a million times better than the alternative: no Han at all.
When I consider the fact that that’s almost what happened, that I almost didn’t make it, it makes be howl with horror. It’s retrospective crying for what took place. When it was actually happening, I sat off to the side and watched. It’s as if I’m only really feeling it now. The effect was severely delayed, but that doesn’t make it any less intense. I − who never shed a tear before, I − who was so strong and had everything under total control, now I’m howling and raving.
I don’t know if I feel more than I used to, but I do know that I feel more strongly. It’s as if the space that used to be occupied by thinking is now occupied by feeling. There’s a lot of it, and it’s very strong. Sometimes I stamp my feet with rage over what happened to me. Knowing that I almost died makes me hopping mad. It’s not fair! I don’t want this! I didn’t want it then, and I don’t want it now!
The more I think about it, the more I come to the conclusion that I’m not crazy, not even slightly unbalanced. I’m perfectly right. What happened to me is enough to make me howl and stamp my feet − and the fact that I do those things, now, nine months later, is just a good sign. Better late than never. I’m not crazy. I’m the picture of health.
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 because 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.