'I want to leave my children something substantial'. The eventful life of creative jack-of-all-trades Marc de Hond (1977-2020)

It still came as a shock, the sad news that comedian, presenter and theatre-maker Marc de Hond died yesterday. Around the beginning of corona, we were still in touch briefly about his theatre tour Advancing insight, which he made as a legacy for his children. How unfortunate it was that most of the performances now had to be postponed indefinitely. His health situation seemed fairly stable earlier this year. How quickly things have suddenly moved with his illness, which has now taken Marc away from his loved ones.

The interview we did recently, in which he was still optimistic and hopeful about the future, now suddenly appears to have been one of the last great interviews. It was an equally moving and down-to-earth conversation about loss and saying goodbye, seizing opportunities and embracing life to the full, however short or long it may be. 'I really need to keep it up for a few more years or my little son James will never have known me,' he said. Sadly, it was not to be. In memory of an extraordinary human being.

A child wants to know its parents

'Over the past few months, I cried a lot when I put my little son James to bed. While he was asleep, I promised him I would do everything I could to stay alive. I really have to keep it up for a few more years or he will never have known me.

I was diagnosed with bladder cancer in late 2018. James was still a baby, my daughter Livia was almost 2 - the same age my little brother and I were when my mother Jasmin got breast cancer. Meanwhile, Livia is 3 - the age when I lost my mother myself.

After her death, I soon got a very sweet stepmother. Caroline had been my nanny since I was born. I also really consider her my mother. But however sweet she was, of course she couldn't completely replace my real mother. Even though so much love from someone else takes her place, when you lose a parent at a young age, you experience a sense of loss; you are always left wondering what it would have been like if that person had still been there.

My mother left a casette tape for my brother and me with an audio recording of an evening together and a message for us: she hoped we would become good Jewish boys. I don't listen to that tape very often, because it still touches me very deeply. But I am SO glad it is there - otherwise I would never have known her voice. It makes her immortal in a way.

I also want to leave my children something substantial. For that reason, I have Advancing insight, gave the theatre tour that I had to cancel earlier because of treatments, a different twist. In the new show, I will be interviewed about my life by a different interviewer each time, such as Eva Jinek, Humberto Tan and Paul de Leeuw. They will ask me things from their own perspective that Livia and James might want to know about me later when I am no longer around. All those interviews will be filmed.

Maybe soon my children will think: sitting around watching my father for hours? Yes, bye. Maybe there will come a time when they feel the need, and they will watch one or two interviews, or who knows, maybe all of them. I'd rather leave them with too much than too little, so they really get a chance to get to know me. But I won't be able to take away the loss and sadness they will feel, should it go wrong.'

In the now is good

'Over a year ago, in the week before Christmas, the same week in which I suffered a spinal cord injury 16 years earlier, I was diagnosed with bladder cancer. De tumour was discovered late and was already all the way through the bladder wall. My bladder had to be removed and I would receive chemo. That seemed manageable. But unfortunately, cancer cells were also found in my lymph nodes and the chemo did not work.

So that means the disease is still somewhere in my body and is likely to reemerge. Of those who have it, only 35 per cent are alive after five years. I don't ask about my personal prognosis. As long as my situation is not hopeless, I prefer to remain partially in denial: on the days when it feels like I am not sick, I want to be able to pretend nothing is wrong. Why should I let those be ruined by worrying about something over which I have no control?

Over the past year, I was often sick and tired from the infections floating around in my body. Right now, things have been going pretty well for a while. My blood levels have improved and mentally too I am surprised at how well I am doing. It helps that I am fairly rational by nature. Moreover, all the previous setbacks in my life have taught me to deal with it soberly. I am well aware that I might not make it, but choose to focus on the now.

A doctor at the hospital said to me at the beginning of the course: 'How do you eat an elephant? In little pieces.' I force myself to look only at the next little piece of the elephant. Sometimes, for a moment, I see that whole elephant in front of me and worry that I won't make it. Of course, that thought makes me sad. But then I turn my attention back to the next thing to be done.

You often hear people in difficult situations say that there is light at the end of the tunnel. But I'm not going to wait for that - I'd rather hang lights ín the tunnel myself. For instance, just before my first chemotherapy treatment, I felt that my friend Remona and I needed a party, something to look forward to. Knowing that it is wiser not to put anything off any longer, I asked her to marry me from the stage during a Jochem Myer performance in Carré, and last November we got married.

Of course Remona and I have had conversations about what happens when I die and she is left with two small children, and we have also cried a lot. But we have made a conscious decision to focus on the now and make plans as if nothing is wrong - we will cancel if we need to. So my diary is full of activities that I look forward to. For me, that's the best way to keep it going.'

 Unpleasant circumstances you can embrace

'I have had a spinal cord injury since 2002. I don't want to talk about how it happened - if anyone wants to know, just google it. More important than how it happened is how you deal with such a life-changing event. That is what I want to talk about.

I used to think that life with such a disability would no longer be fun. For the first five years, I was therefore very keen to learn to walk again: only then could I be happy again, I thought. That I would have to spend the rest of my life in a wheelchair was something I didn't want to accept.

But rehabilitation was arduous and tough. The moment of repentance came one day when I had struggled to cover 15 to 20 metres behind my walker. Within 10 seconds, in my wheelchair, I covered the distance it had just taken me 10 minutes to walk. Suddenly the penny dropped: there would never be a time when walking was better than moving around in a wheelchair. And I realised that with a wheelchair I could actually do everything: I lived independently and could look after myself just fine.

Until then, the perspective with which I looked at myself was based on the prejudice that people in wheelchairs are worth less than people who can walk. But as more and more beautiful things came into my life that were the direct result of my disability, I slowly managed to accept and then truly embrace my situation.

For example, I played wheelchair basketball and made it to the Dutch team, with which I travelled all over the world. And with my disability, I also turned out to be able to date cute girls.

I also finally had a good story to go into theatre, something I had wanted to do for some time. I made a cabaret performance about my disability and told the audience all the cool things about it: that I hadn't managed to make it to the national team with football, but I did with wheelchair basketball; that I don't have to queue at the Efteling amusement park and can park everywhere for free. After mentioning a lot of positive aspects, I joked: "I know what you are thinking now, you also want a spinal cord injury. By doing so, I hoped to show others that you can learn to look at something bad in a positive way. Because if I have experienced anything, it is that happiness does not depend on your circumstances. Above all, it is the story you tell yourself, the way you look, that determines your reality.'

Love for your children must come first

'My stepmother and father's divorce was one of the most profound events in my life. I was 12 at the time, and things started going wrong four years earlier when their second son, Lion, died of a heart defect after only 11 months. Because of their grief and the fact that my father was in America a lot for work, my parents grew apart.

Shortly after my sister's birth, my father ended the relationship because he felt unhappy in their marriage. My mother felt dumped and was furious at having to move back in with her mother with a newborn baby. They got into heated arguments, up to court cases. My brother Michel and I lived with my father, my half-brother and half-sister with my mother, but suddenly there was a wall between the two families and we were not allowed to see each other for over a year. We became part of their conflict and that hurt me a lot. I had already lost a mother once, now I also lost my second mother.

I tried to find a solution, but it was like negotiating with Israel and Palestine. Only after seven years of mediation could contact between my father and my sister be somewhat restored. Even after that, it remained the case for years with birthdays that if one came, the other stayed away. We children constantly had to choose or celebrate holidays separately. That only changed when my little brother was the first to have children and told our parents, "You will only be my children's grandparents if you come to their birthdays, and then behave normally to each other."

The divorce and its aftermath had a big impact on me. I was very disappointed in my parents: their hatred for each other was apparently greater than their love for us, because they were unable to escape their anger for our sake. At the age of 17^e I left home. The fact that I was no longer between two fires gave peace of mind.

Because I had become afraid of getting attached to someone, my relationships never lasted more than a few months. I knew how painful it can be when love goes wrong, so I never let infatuation become love - I found that too scary.

Since I've been with Remona, it feels like it comes naturally, and I hate to think of things going wrong between us. But I know one thing for sure: should that happen, I will make sure at all costs that we do not end up in the same situation as my parents, by understanding the other's emotions and building a bridge. The love for my children and the desire to do the best I can for them will always be paramount for me.'

Everything is temporary, but that's okay

'When I was in my twenties, I was a multimillionaire for a few months. With two companions, I ran Veiling.com, the largest internet auction in the Netherlands. All major European competitors wanted to take over our company. Because we all had a substantial share, we were millionaires on paper after the takeover. We were not allowed to sell everything immediately, because then the share price would plummet, but I sold as much as was allowed and, as a 22-year-old, got a couple of tons in my account anyway. I bought a sports car and paid off my mortgage.

But then the internet bubble burst. By the time we did get to sell our shares, they were not worth much.

I had been on the radio before to talk about the internet and was asked to become a DJ at 3FM. I was allowed to make my own programme at night and on weekends. But the dream of becoming the new Ruud de Wild went up in smoke when I got that spinal cord injury - presenting a morning programme five days a week from six to nine is impossible.

It is very painful that I miss out on many things I enjoy and am good at because of all my physical discomforts. I always have to add my career to it a bit and therefore have limited success because my first job is being a carer for myself and a lot of time goes into that. So I have learned that everything is temporary and passes. But there is also a positive side to that: something new worthwhile always presents itself. It is beautiful that life has so many different phases. As a result, several dreams can come true in one life.'