It was a Tuesday evening in March. My wife Riemke and I were having dinner at home. Suddenly I couldn't swallow any more, couldn't get the food inside. I couldn't talk either. I tried, but it sounded like I was drunk, like I had a double tongue. Just like that, from one moment to the next. Out of nowhere. That same evening I was in the OLVG hospital in Amsterdam-East, just around the corner of my home. From there, they sent me on to OLVG-West, where they were able to do a scan of my head. They saw a small spot on my brain. The diagnosis: cerebral infarction. I immediately got the idea that it was all kind of over. A brain infarct, you don't recover from that. To be sure of the diagnosis, they wanted to do an MRI. That had to be done at the hospital in Zaandam. Transport wasn't there that late at night. I had to wait. For one night. I lay there in a small room. Riemke sat with me. At four in the morning I told her to go home. There was no point in staying. Shortly afterwards I got another blanket and fell asleep.

When the sun rose, they took me by ambulance to Zaandam. Paralysed, I was. Who could resist starting the day with such a diagnose? On the way, I could just about see through a window of the ambulance and saw high above me Jeroen Henneman's The Wheel, a work of art on a building near the Coen tunnel. Every time I cycled from home to rehearsal space De Werf, I saw that wheel too. Like a lighthouse shining its light on our studio, my second home. Ten months before my ride in the ambulance, it burned down completely. That too was already gone. I felt like it was all slipping out of my fingers.

In Zaandam, they made the scan. Thank God a brain infarction didn't appear. They then knew for sure that I have a rare muscle disease. Myasthenia gravis, a severe muscle slackening. I was incredibly relieved. To have it is no joy, but then I thought: I will recover from this. The medicines I was given worked immediately. I ate a sandwich, could put my suit back on and walked around the hospital. I emerged again. The feeling: I'm staying with it. I immediately made plans.'

The hours before, you were still confronted with finality.

'Absolutely. I experienced it with friends and girlfriends and colleagues. I thought of Henny Vrienten and Jan Rot. At how fast that all went. That's a hole that has been punched. A great sadness. As a monument to our 50th anniversary next year, I am now working on an extensive book with stills of videos I made with the Nits over the past decades. From music videos to more reportage-like footage of our tours. Great to do, but it also confronts me with my youth. With how I looked and how easy things went. It was peaky and natural. I was in my prime. It's beautiful to see, but also confronting.'

When I approached you for an interview a few weeks ago, it was not yet the right time. 'I'm not ready to have long conversations yet,' you emailed. 'I'll give it some more time.' How is it now?

'It hardly ever happens that I talk for a long time in a row. I am easily short of breath. That's also because of my medication. A few months ago I was in Spain for a while, where my daughter and granddaughter live. Normally I walk there a lot. This time I was up pretty quickly. The things I used to do without thinking, I can suddenly do less well. That is shocking to notice. From one moment to the next, I am confronted with my body and my lack of energy. I have always been healthy, never had big complaints and ailments. I could play intensely. Performances of more than two hours. And now this. I have yet to see if I can regain that level from before.'

Are you holding back at the moment?

'I think so. Should be too, I think. I'm sparing myself a little bit by not talking too violently, too fast or too much. I just have absolutely no experience with it yet. Within family life, of course. But it's very different when you go out there and do interviews or perform, tour and travel. For me, that was the most normal thing in the world. I always did that with brilliance and pleasure. It won't be like it was anymore. And suppose it doesn't go at all anymore? Then I will have to change course. I can make films, edit, paint, record, write; for a pensioner, I lead a reasonably full and busy life. Despite my condition. Or my problem.'

What do you call it?

'I don't really know. I'm thinking about that now. What do I have? It's an illness. My handicap. It still shoots in all directions. It also depends on how busy I am or how things are at home. In the past two weeks, my daughter and granddaughter from Spain stayed here. Many people came to visit: family, friends, their children. I noticed that I found that heavy and withdrew into myself. I was there, because I really like it, but I didn't really participate anymore. Normally I was in the middle of it, now I was observing. I no longer recognised myself. A lack of energy necessarily changes my role.'

Can you explain what exactly is wrong with you?

'I have a condition where the contact between the nerves and muscles is disturbed. In my case, it's in my head. Without medication, I can't swallow properly. Those muscles just don't work like they should anymore. I can still speak a little, but not very well. Without medication, I can't formulate words properly. I also sometimes suffer from drooping eyelids. My muscles then can no longer keep my eyes open. The other day I was cycling back home from a performance that lasted quite long, about 5 kilometres to Amsterdam East. On the way, my eyelids fell shut. In the Vondelpark I had to stop. Further driving was out of the question. I took my medication, ate and drank something and after half an hour my eyes opened again. It was confronting that even that cycling through the city, which I have been doing all my life, might not be possible anymore.'

Do you also worry about what your illness does to your appearance? You have tight eyelids, diminished expression. At the same time, you are someone who loves nice suits, glasses and hats of a certain beauty.

'I notice, for example, that I can no longer smile exuberantly. When something funny happens, I sit and cough like a sheep. The laughing muscles I had are locked. It doesn't come through. A laugh becomes a grimace. Of course that's tricky. I don't have to step through life like a George Clooney, but there has to be a certain charisma. A certain engagement and aesthetic. I love the sixties, the clothes of Ray Davies of The Kinks or Charlie Watts of The Stones. That's how you're supposed to make music, I think. That's part of the performance.'

Are you afraid that people will soon see a different man on stage?

'I don't know about that. It will be different. I hope to be able to disguise it.'

About your condition, I read the following: usually symptoms worsen in the first three to five years.

'I am experiencing that now. It ís getting worse. And I do have a higher dose of pills to counteract the symptoms. They don't do a great job yet. I'm still trying to find the right amount of medication. During the day it's all okay. It's bearable if I don't do too much.

The songs you make with the Nits are petite histoires. When you play them live, you also often explain the context of those songs. What is it like for a storyteller to have trouble speaking?

'Very difficult. I have to find a solution for that, because I don't think I can sing a full performance and also tell stories. I can't do that anymore. Maybe there should be a narrator. Or I need to illustrate something with images. I don't know yet. It's important to have something around those songs, though. To show a corner of the room that would otherwise remain out of sight. A different view. Over the years, that has grown. In the beginning I only opened my mouth to sing. I was a kind of shoegazer. I didn't say anything. But gradually, I felt more the need to tell why something was written or what is the history of a song. Those stories are important.'

How is your illness affecting the preparations for the Nits' 50th anniversary?

'We still have to talk about that. I am still very much left alone. At least at the end of August, we're going to spend a few days working on a new EP. Then we'll do two short recording sessions in Studio 150 in Amsterdam-North. And then we'll see. We also have concerts abroad planned in March and the anniversary concert in the Amsterdam Carré theatre on April 13. What we will do there, I don't know yet. We'll have to see how far along I am with singing by then. And how long I can keep it up. If I can no longer tour for a few weeks and then perform three or four times a week, we'll have to take that out of the schedule. I don't really think this is a problem. I can live well with playing once in a while. There's so much I do on the side.'

That's what keeps you going?

'There are plenty of examples of people affected by whatever illness and who do function. Who find solutions. The artist Chuck Close is one such example. He made hyper-realistic portraits 3 metres high on which you can see every hair and wrinkle. Every detail. Fascinating work. Until he became disabled. He could no longer paint, but managed to reinvent himself and developed a visual language with cubes and circles that finally resulted in those portraits again. That man had amazing resilience. It is interesting to see how others find a solution for when things go wrong. Not that I cling to that. I have not become disabled, there is a lot I can still do. Not being the same person I was is annoying, but it doesn't make me insecure. It does make me wistful not to do things with the self-evidence and ease as before.'

To what extent did you have a hold on the music, the art, over the past few months?

'Usually, when I put on Nick Drake in moments of dissipation, everything comes right again. His voice, the atmosphere of the songs: they are gems. That comes in every time and is always beautiful. I haven't played much music lately. Too many stimuli, I think.'

Where do you get your positivism from now?

'Because of all the things I do that are out there. I love so much. Yesterday I was at a documentary by Werner Herzog who I admire a lot. A difficult man, but also someone with the will to create and live. That is so important. Of course you can have doubts then. That's part of what we do. But there must also come a moment when you get over that. That you fight the doubt and overcome it.'

You have a rare condition. No doubt you have asked yourself: why me?

'I shouldn't ask myself that question. It naturally applies to anyone who is overwhelmed by an illness. There is no answer. I live a very healthy life. Since 2015 I haven't drunk a drop. I am a vegetarian. There have never been any drugs in my life. I have also hardly smoked. It's a clean existence I lead.'

On the Nits' website, there is an article from Aktueel magazine from 1982 that talks about groupies. In the accompanying photo, you are neatly dressed in suits, next to a quote from a bunch of girls who say: 'We only had a cosy chat with them, nothing else happened.'

'We are a boys' club. Nice guys. That has never changed. Very loyal to each other too. Done so many things together for so long. Always on and on.'

Are those also a bit your sisters of mercy: making plans, doing things?

'I get up and look forward to what I'm going to do that day. Like making that book of video stills to be published in February. I go through all those old tapes. I see things I've never seen before. Film reels that I rescued from the fire of De Werf that have been affected by the fire and the extinguishing water. Footage from the dressing room of the Olympia in Paris and Carré in Amsterdam. Of television interviews in Montreal and Moscow. Shots of hotel rooms in Helsinki and New York. I captured it all on camera from the beginning. It's my grasp of the periods we went through.'

You got your condition ten months after the fire of De Werf, your studio and rehearsal space. To what extent did that affect your illness?

'I don't really know. There are theories about some illnesses echoing dramatic events. I hope not. It would be really bad that that fire also ended up in my head. But it could. I'm working on a song now and it goes like this: What a strange building/ Beside me/ Behind me/ In front of me/ Inside me. That song had been around for a while. About that building; The Werf. But only now, a month ago, I thought: hey inside me.... It goes from an object that stood there - a strange building, an old gymnasium, the school that belonged to it had broken down before - to something inside my head.'

What did you lose with the fire of that building?

'De Werf was our laboratory. Such a simple place. A detached building. Our practice space. The studio. We recorded In the Dutch Mountains there and other albums. It was also a place of escape. Others recorded their music there. We met there to meet and discuss new plans. That building was the heart of the band. We no longer have the convenience and safety of our own space. Now we see each other less. We have lost a lot more than just a building. Look: we have worked there all these years and done so many things, our oeuvre is gigantic. It's no big deal if something new isn't added every year. Had the building burned down in the 1980s, it would have been a deep wound. Now the wound is also heavy, but more emotional. It is a turning point. It closes something.'

Did you come to terms with the loss of that place?

'I don't think so. We immediately had to make sure we got stuff to work with again: instruments, amplifiers, all those things that had been destroyed by the fire. Then this was followed by an extensive tour for the album Neon, which came out shortly after the fire. I didn't get around to anything like mourning.'

As you stood there by the smouldering remains, drummer Rob Kloet felt too powerful for a moment, he said. You were the one who comforted him, put an arm around him and said: 'We'll find a solution.'

'And then I'm also one of those people who says: we have to do a band picture now. Then I am the archivist. I was aware of the historic moment. I also had to capture that part of our history.'

Fifty years of Nits, the fire, your illness; I can imagine you looking back on your career irrevocably.

'I've been making music since I was eight. First I played ukulele, then guitar. I first started at home, between the sliding doors. I come from a musical family. Lots of operetta. At birthdays, uncles and aunts would sing Die Lustige Witwe and Der Bettelstudent after the first beers and drinks. Even when I was nine, I performed in the Frankendael community centre in Amsterdam East, where we lived. In that same building, Rob de Nijs rehearsed with The Lords. All those guitars and amplifiers. That's when the magic started. It was in the shine on the guitar of The Lords' guitarist and in the pink mother-of-pearl of a guitar-pick he gave me. I was seduced by the new era. There were The Everly Brothers, Buddy Holly and a little later The Beatles. I wanted that too. So out of that whole tangle came naturally the moment we started making our own songs. That's when it started.'

Looking back, what are you most proud of?

'Still on the iron progress of everything. On the development we went through. On the curiosity and adventure. On the lack of fear of letting go of something if it didn't work and on the new paths we then explored afterwards.’

Commercially, the heyday was in the late 1980s after the European success with In the Dutch Mountains. But you never had a breakthrough to the general public. In retrospect, a blessing?

Perhaps. I didn't feel the need to break through enormously either. At least it meant we kept the steering wheel in our hands. We could continue to decide for ourselves what we wanted to do. If it all gets too big, you soon get tangled up. Then there are too many interests around you: too many people who want something from you, too much money.'

When I look at the photos on your website, most of all you have fun together. Fancy playing.

'We always went out eagerly.'

What's it like not being able to do that now?

'Not very much. There's such a reservoir of fun in the past. I can live with not adding to that all the time.'

When you were recently in Spain for a few weeks, you wrote a lot there, you emailed.

'I always do, wherever I am. No lyrics, just music. They are sketches of songs. I take my iPad with me and with the programme Garageband on it, I can compose endlessly. I still want to make a book containing a selection of the hundreds of iPad songs I have made. I always take a photo of the place where I record. I then make a drawing of that. Those should go in that book with those songs.'

According to your best friend Pim Kops - keyboard player and guitarist with De Dijk - you are good at working intuitively and not immediately letting your ratio speak. You had just had that diagnosis. With what feeling did you go to Spain?

'My singing was different, more slithering. But further I worked as always. I start without an idea. In absolute freedom. Often with samples I make. Sounds from the environment: a scream from a Spanish woman, a thunderstorm, seagulls. I start playing and recording and after an hour there is something.'

When you do put words on paper now, is it also about your diagnosis or your hospitalisation?

'Some of it gets into my lyrics, but never that directly. We are currently writing songs for an EP that mainly focuses on the fire. Every day I write something about that building and what I miss about it. About how important De Werf had been. And still is. That's deep and it won't go away from my head. I have a text about a moment when I was standing among the smouldering remains of the kitchenette of our studio after the fire. There I look at the paper diary we had hanging on the wall. Remnants of it were still hanging there. Fragments of the month of May: Standing in a burned-out kitchen, looking at the cruel month of May. So the theme now is mainly that fire. Although it slides strangely into my illness. That is also a kind of fire. Also a catastrophic event, but in me. Both are a tragedy.'

Is it blow by blow?

'That sounds too dramatic, but the two do influence each other and so does the writing. Unnoticed, that creeps in. When you paint, every portrait is essentially a self-portrait. The same applies to my writing. I write about that place, a beloved building, but to some extent I am that building myself'.

According to Rob Kloet, in your lyrics you are mainly looking for answers.

'The beauty of making music or art is also in finding the answers to the questions in your head. These are about desire. And about the mystery of life. What is it all about? What is the point of it all? I am a man who creates dreams and colourful landscapes to lift the sometimes grey reality. Often a song is the solution. That gives strength and wisdom and fulfils longing. Those songs, they give comfort.'