How do I live my life while facing death?

Richard de Jongh

In my search for remarkable leadership, I met Pepijn Storm van Leeuwen. He was an impressive appearance: a large, in some way distinguished stature, in contrast with his gentle face. Pepijn was a successful consultant and had been a liaison officer at the SFOR, an international military force keeping the fragile peace in the Balkan region during the second half of the nineties.

I’m using the past tense here: Pepijn was. Storm van Leeuwen died of lung cancer in December 2023. He was 54 years old. He had battled with his disease, not against it, for almost five years. He had managed to stay in control of his fate by letting go. Short before his death, we had a two-hour long conversation at my home during which he explained how he had embraced life while facing death.

I hadn’t known Pepijn for a long time. One of his children is a friend of one of mine. That’s how we met, indirectly really. I thought he was a beautiful person. A warm twinkle in his eyes, also those last days, and always completely in touch with his surroundings, open and connected. The way he dealt with his deadly disease confirmed to me that he had a great wisdom of life: the value of our life doesn’t lie in the destination, but in the journey. In his case, it’s all about the choices he made on the journey towards his death. Very consciously, but without any fuss, Pepijn chose to stay in control in times of crisis. Not for himself, but for those around him. That way, he showed great leadership.

Pepijn Storm van Leeuwen: ‘I remember so well the moment that I decided to take the course that I’ve taken. It was in 2019, I was 50 years old, I had been an independent consultant for just 6 months and it was the first week in which the disease revealed itself. My company was doing really well. I had just finished an assignment for the National Police and was working on a job for the National Coordinator for Security and Counterterrorism. From a business point of view, I was in a great position, the assignments actually came in spontaneously. I worked really hard, even though I was a bit tired and coughed a lot. Probably pneumonia, the doctor said. It didn’t get any better. So an X-ray was taken. Before I even got home, I received a phone call from the clinic: come back to the emergency room right away. I had a pulmonary embolism, and they had seen something else too: a tumor in my right lung that was 5 by 10 centimeters. It turned out I had stage 4 lung cancer. That’s when you realize you’re on a fatal track.’

‘I remember telling my wife that first week: we can’t protect our boys from this disaster. The only thing we can do is to show them how to travel this road, the road to the end. You have to show the children how you embrace pain and grief and how you can partially let it go. It was the moment Mireille and I told each other: let’s take on this challenge.’

‘I want to make sure that my children -they’re 16 and 20- can live with their father’s death. I can’t protect them against it, but I can teach them to handle it themselves. I tried to show them that they have a choice. I don’t have a choice in what has befallen me, but I do have a choice in the way I deal with it, over and over again.’

‘Initially, the prognosis was a few weeks, maybe a few months. Later on, it became clear that I was given some more time. I went back to work full swing, even though I was sick. I worked excessively hard, as I had always done. I could almost literally push myself over the cliff. I thought: before you die, you have to make as much money as you can to leave to your family. It was partly a sense of responsibility, but it also stemmed from profound insecurity.’

‘How did I control the chaos in my head? I started meditating. I never thought I would. They insisted at the Helen Dowling Institute in Bilthoven, which provides support to cancer patients: practice mindfulness, start meditating. It felt like a template, a model that has been followed too much. They couldn’t explain to me either why it would be so beneficial. There you are, a man in pinstripe suit, thinking: you mean well, but not my cup of tea.’

‘At a certain point, my associate called. He had met a female colleague, also a cancer patient. She benefited hugely from meditation. That woman has a convincing story, he said, and she’s willing to talk to you. I thought: it’s the second time in a short while that meditation was recommended to me. I can’t dismiss such a signal.’

‘My associate had arranged a meeting somewhere in Noordwijk. I expected to meet a woman in a floral dress, a reclusive herbalist, but a well-dressed, highly educated, American business woman showed up. She told me about her compatriot Dr Joe Dispenza and about the scientific basis underlying his method for actual change. Voices in my head said: yeah, right, scientific too, sure. And yet, I was intrigued. I used to work in the army, as a scout. I thought: you’re going to do this, you’re going to explore this new area and take it from there.’

‘It was the beginning of a new chapter. While meditating, I literally started feeling oceans of time to make choices. I remembered an experience I had in Bosnia. As a liaison officer in the SFOR, I’m driving through the mountains with my interpreter, when we encounter black ice in a curb. It looks like asphalt, but it’s ice and extremely slippery. Next to us, a ravine, no guardrail. My jeep slips, I hear my interpreter screaming next to me. I feel that I’m dealing with the situation, I take my time and think: this is a four-wheel drive car, there’s a small grass border along the ravine, so I wait until the rear wheel hits the grass and accelerate. Just like that, we go around the bend.’

‘What happened then, is happening now: total acceptance of my destiny. One of Dr Joe Dispenza’s recommendations is: come up with a 2.0 version of yourself. Work out the details. Think about how that person walks, how that person talks and feels. It’s amazing what you can achieve with that. An example: I used to be easily offended. I could get very angry if I didn’t feel respected, for instance. I would become very dominant, creating conflict. That wasn’t any fun for my wife and children. I started to work on it, reprogrammed myself. I was successful. My behavior improved and I experienced a new way of living, a new world.’

‘I would no longer take offence. At work, I was a tough leader, also when I was sick, and primarily to myself. Our stakeholders were just difficult people. Stupid and stubborn. Pathetic. Those guys could really get on my nerves. At the same time, I had to admit that this behavior was leading nowhere. I noticed that people were getting scared of me.’

‘I changed my attitude; I started to approach with empathy those at whom I could get angry. They were puzzled: where did this completely new attitude come from? They were expecting a blow, but the blow didn’t come. It wasn’t instrumental to me. It wasn’t a skill. Meditation helped me take control. Let me put it this way: I had mastered the skill to look at the other person with love and see his challenges.’

‘I slowly became a better version of myself, showing forgiveness, compassion and empathy. I’ve been meditating for about three years now. Twice a day. When I meditate, my ego disappears. We all have a voice in our head. It’s a roommate. It’s not you, even though we often think so. When my self disappears, only that voice is left. It’s a difficult exercise, but I become filled with beauty by letting go completely and surrender to all-encompassing trust. Then, there is room to fill my mind with … what would you call it? Call it divine love, call it peace. This way, I can also accept my own death.’

‘I’m reprogramming myself by meditating. It allows me to start the day with a positive intention. The beauty is: you feel energy, you radiate it, you can be present for your loved ones. At work, I used to fight against my perceived insecurity. In the past four and a half years, I’ve learned to trust the uncertainty, the unknown, instead of being afraid of it. I owe this to my illness. Those four and a half years have been a great gift. Chronologically, it’s been an ephemeral time, but in terms of intensity and quality it’s been extremely valuable. I have the feeling, and my children feel the same way, that the past years have been the best years for me and my family. Just because we’ve been so consciously connected.’

‘I wish everybody could experience this positive part of facing death. I haven’t lost myself during the whole disease process. I’m actually telling myself: you are dead already. I’ve created space by doing this. It’s based on acceptance and letting go. I feel peace and calmness and I meditate a lot with Mireille, my wife. We then share positive energy. That’s where we’re connected. I tell her: look into your heart, because that’s where I am and will always be.’

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