Kim Spierenburg, 24 years old, is a violinist. She has suffered from the autoimmune condition SLE since she was four. She toured with Marco Borsato and Ali B.
“I started playing the violin when I was six. I had already had the condition for two years. My parents had noticed that I had changed a lot. I used to be a very energetic child but suddenly my legs collapsed from fatigue. Every day I experienced a great deal of pain and infectious spots appeared on my face. I was first treated for juvenile idiopathic arthritis in the AMC [Amsterdam Medical Centre] but my condition only deteriorated there. We then went for a second opinion to the Wilhelmina Children’s Hospital in Utrecht, where the best specialists are to be found in the field of autoimmune conditions affecting children. There it appeared that the medication I had received was simply exacerbating my condition. At the time we learned from this that you always need to follow what you feel.
“Playing the violin as a child was a dream to me. I had already wanted to do that since I was three. Music can be a very important source of distraction and pleasure. Playing the violin is very physical. The instrument lies close against your body and you feel the vibrations when you play. When you play the violin, it is impossible to think of anything else, because you first need to imagine the sounds in your head before you can produce them. From the start I was fascinated by the lovely, pure sound, so that is what I really aimed for.
“At a certain point I also participated in competitions, where I got to know other children who were already studying as part of the young talent class at the conservatorium. They told me how they played together during concerts. And I found it absolutely fantastic standing on stage….”
The fact that you are a born performer, is that something in your blood?[Laughing] “I have no idea where that comes from. From neither one of my parents in any case. My little brother is also very musical and plays the guitar very well. But he always saw me struggling with my violin and then decided to go and study physics. It is funny that my great grandparents also both played the violin. So perhaps it just skipped a few generations.”
Did you find it easy to get into the conservatorium?
“When I was twelve years old I did an audition and was accepted into the young talent class. It was a crazy situation, because I could only attend four lessons of an hour each at secondary school each day as a result of my condition. During puberty, when I had a very difficult time, it was even less, because at the time I was entirely confined to a wheelchair, had little energy and a great deal of pain. So I went to school, rested at home, did my homework, rested, played the violin and went to bed.”
How did you learn to cope with that at such a young age?
“Because I devoted all my attention to playing music and learning, I did not constantly focus on negative things. Music was an escape to me. It enabled me to focus on positive things with which I could do something.”
But you also enjoyed learning at school?
“Yes, I love languages a great deal. When I turned six years old, I told my mother that I really wanted to learn Chinese. My mother then arranged for me to go to a Chinese school. So I went there every Saturday from that time on learning Cantonese together with only Chinese children. Naturally, that was exceptionally difficult, because they already spoke the language and there I sat as Dutch girl amongst them understanding absolutely nothing. Yet I thought it was very nice.”
Do you still speak Chinese?
“I did until I was twelve and then came the young talent class and it was impossible to combine them. Language fades away very quickly, which is a pity, but, if I hear Cantonese, it is immediately possible for me to parrot it, although I do not always know exactly what it means. I have a dream of going on a trip to China and then I will certainly pick it up again.”
Where does your interest in China come from?
“I have Chinese blood. My grandfather and grandmother come from Indonesia and their ancestors were mixed. It is no longer possible to see anything at all of that in my appearance however, my mother and grandmother more so do show Asian characteristics since they are closer related to my Chinese great grandmother.
So you did all of these things in addition to school? And you also even skipped a class.
I have a lot working against me but there’s also many things in my favour, is what I always say. I am very happy with this, because that is an aspect with which I can always preoccupy myself if my body does not hold up. At the present I’m involved in writing my own columns and I produce short films. My dream is still to write a book at some stage. I have already experienced a great deal, as a result of which I have learned to think in terms of solutions. If I manage to come up with a good format, that could be interesting to others.”
So that it may serve as a support for others? Or to write as a means of catharsis?
“Writing as a means of catharsis … that is not something I really believe in. It would be better to do that in a diary, I think. Yet I also find it interesting to find out why I have done certain things in a specific way and what else I can still learn from them.”
You must have tremendous willpower.
“It is not only that. It is also because I am very preoccupied with positive things. Very often I have heard that certain things were impossible. For example, in the beginning they wanted to send me to special education. I really wanted to go to a pre academic school but all of the doctors and care providers said I was crazy. My parents were even sent to a psychologist, because they also believed that I was capable of doing it. At the start of every new school year, I was told that it would now become so difficult that I would really no longer be able to manage.”
So you have really defined your own path in everything?
“Yes, this is what my life has always been about. You want something but you are constantly thwarted. So you have to develop a way to ensure that the heads are all pointing in the same direction, because you do not have the energy to fight everything constantly. This I do by trying to control myself and by imagining what it would mean to the other person to yield a little ground in order to make it work for me. Thanks to my condition, I have become very good at this.”
Surely such a school is very proud of you then?
“Subsequently, yes. Now everyone thinks that it is quite tremendous. Ten years ago the situation was very different. At the time I had not yet appeared on television and I had not performed in any concerts. Therefore I was not able to refer to previous triumphs in order to convince people that my effort could be successful once again.”
Did you encounter as much resistance in the conservatorium?
“There were certain teachers who advised me against it. Yet I simply did the admission test and people unanimously agreed that I had sufficient talent to be accepted. Ultimately, everybody is assessed on the basis of the same criteria. However, I naturally had a physical handicap, so I simply had to do better than my best.”
You have played together with Marco Borsato. Tell us how exactly that went.
“That is a story in itself. In 2014 I participated in the Big Improvement Day and gave a speech to business people about dreams. At the time I cheekily said that my dream was to appear in De Wereld Draait Door and to perform in a stadium. Everyone laughed and I received a standing ovation. Ali B. was also in the audience and after that he gave a speech in which he said that he would arrange that for me. I thought, ‘Yes, I’m sure. I’ll believe it when I see it.’ But around about that time I received more attention from the media. Hart van Nederland had a report on my speech and I was invited by Giel Beelen to appear in his radio programme….”
Were you physically capable of doing that?
“Actually no but it gave me such a shot of adrenaline that I managed nevertheless. And then a month later at three o’clock in the afternoon I received a call asking whether I would like to appear with Ali B. in the broadcast of De Wereld Draait Door that same evening. At the time I was with a violin maker and could only think: THAT IS IN THREE HOURS’ TIME! WHAT MUST I WEAR? WHAT AM I GOING TO SAY? [She laughs loudly.]
“In the taxi on the way to the studio I tried to prepare myself a bit and I was on some type of high throughout the broadcast. At a certain point Matthijs van Nieuwkerk asked where I saw myself in fifteen years’ time and I replied that I hoped that I would perform in a large stadium. Facing the camera, Ali B. said, ‘Marco! In two months’ time we will be in the Ziggo Dome. If Kim cannot come with us, I’m not coming either.’ [Now almost prostrate from laughing] And that very same evening I received a tweet from Marco Borsato asking whether I would like to compose an introduction for one of his songs. Everyone was very enthusiastic about it and so I performed in four shows in front of 18,000 people. I thought it was absolutely fantastic.
“After that Marco asked me to accompany him on his tour and eventually I performed together with him in the Ziggo Dome sixteen times. I also obtained my Bachelor’s in classical music in the interim. It was pretty demanding, because the year before I had injured my hand also as a result of my condition, with the result that for a while I could not play at all. Consequently, I had to do without the most important thing to me in my life, my violin, and it was even unclear as to whether I would ever manage to play again. At the time I noticed that I felt far less happy as a result. For that reason I decided that summer that I would do all in my power to get back to where I had been. It began playing the violin one minute each day. It was exceedingly difficult. I remember that I was again able to play scales two weeks before my examination. Ultimately, I managed to pass with a good mark anyway. But at the time it was clear to me that playing in an orchestra, an ensemble or a quartet was something that I was not cut out to do. Consequently, I decided to do a Master’s in Live Electronics with violin as the primary instrument, although I also devoted attention to composition and programming. Now I am starting my second year.”
How are you doing now?
“It seems that my condition has seriously deteriorated in the past six months probably due to coeliac disease. This is a form of gluten intolerance which leads to infections, which in turn elicits an autoimmune response. And I already have two autoimmune conditions, so they are probably simply exacerbating each other. As such, there has been a rapid decline. This is rather scary, because I see myself become weaker every day and I have no idea why. At the present I am still in the middle of diagnostics.”
And what now? You would like to write a book, produce a film, programme, make music.
“I still have a great many dreams, although everything has now been jumbled up. Naturally, my biggest wish is that I recover completely and that then perhaps a great deal more will be possible again. Suppose for a moment – everything tentatively because I have no idea how it will turn out – this condition has lain dormant for twenty-four years and has largely been responsible for my extensive fatigue. Then perhaps it may be possible to become stronger again. And if that is the case, then suddenly all sorts of new things will be possible. Recently I wondered whether I should perhaps start studying econometrics.”