In love, engaged, married, lost. How do you live after the worst possible thing?

He had something very special, something she didn't find in people she had dated before. "Niels loved bird watching," says Elsbeth van Velde (27), "a hobby you wouldn't think of in a 20-year-old man." He liked to go on holiday with his parents. "People around me thought that was strange - you don't go on holiday with your parents at our age, do you? But he didn't care and that's what I found attractive. I'm not someone who falls in love instantly , but that time I did."

In May 2018, they started dating, and in December of that year she sat next to him in the hospital waiting room. He had had leukemia years earlier and had to go for a check-up every six months; blood tests early in the morning, an hour of waiting and then a consultation with the hematologist. That time, it took a long time before the doctor came to get them. That gave her a gut feeling, she says, but they said to each other: "Oh well, it's just taking longer." When it was their turn, the doctor had a gloomy look on her face. "I don't have good news for you, boy," and she put her arm around Niels. A series of treatments followed, there was sometimes hope, but they also knew that the options were limited because he had already had chemotherapy. One year after that bad news conversation, the doctor said: "I'm afraid we can't do anything more for you."

In love / Engaged / Married / Lost

is on a tile on Elsbeth's Instagram. They got married two weeks after the doctor said: "You have to do everything you still want to do now." Because getting married was at the top of his wish list.

Not much later, Elsbeth became a young widow. She fell into a deep depression. The decline and death of Niels had left traumatic images that were played in her head during the day and at night. She became afraid of it, she hardly slept. PTSD, the doctor said.

Years later, she added two words to the list she had on Instagram. Now it reads:

In Love / Engaged / Married / Lost / In Love / Engaged

Four, five years ago Elsbeth was stuck between the dark thoughts in her head. She used a lot of medication and was constantly afraid that she would go crazy and do something to herself. And now she was in love again and engaged!

How do you continue living after pain, sorrow and misery? What helps you with that? Therapy, the people around you, an optimistic character? How do people find their way back in life? This week the podcast Doorgaan, hoe doe je dat? will be released which is about that.

To choose for it

The first bit of recovery came for Elsbeth van Velde on the day she called the mental health crisis service. At that moment, she was extremely afraid of her thoughts. Was she a danger to herself? Her heart rate was high, she felt hunted, her legs tingled, she hyperventilated. Once in the closed ward of the mental health service, she felt a peace she had not felt for a long time.

Being home alone was “surviving, instead of living,” she says. Leaving the house where she lived with Niels gave her a breath of fresh air. As if she could gradually see in color again for a day, instead of in black and white. During the short stay, she followed a strict rhythm, with therapy and eating at fixed times. The tipping point was: choosing not to give up. “Niels wanted to live, but couldn’t. I couldn’t die now because of my own choice, could I?”

At home, with therapeutic support, she found the motivation to develop a new rhythm. A 45-minute walk at seven in the morning. Every day, never skipped. What also helped: friends who came over to play a game, eat a cheese sandwich together or cycle a bit through the park. A friend who prayed for her, and the support she felt from their church. She talked to her father about what it was like for him to lose his wife – her mother. He also became a young widower, she suddenly realized, she is not the only one who experiences this. "Eventually I felt proud that I managed to stay upright. I wanted to hold on to that feeling of victory."

Vitamin R

Perseverance is something that your environment does together with you, says psychiatrist Dirk de Wachter. In his practice, he sees people every day who “try to live in the difficulty”. In 2007, he did PhD research at the UvA: one third of the people who have experienced major setbacks in their upbringing (he specifically studied people who have experienced sexual, physical or psychological abuse) manage to build a good life in terms of work, relationships and their own family despite the poor starting position. “Because, in addition to the destructive family, they have been able to build islands of attachment with other family members, a teacher at school, a neighbour. Points of light of trust.” A third does not succeed, or remains connected to psychiatry forever. And a third is somewhere in between: “With good professional support, we can get them to the right side of the road.”

Professor of clinical neuropsychology Margriet Sitskoorn calls it 'Vitamin R': vitamin relationship. Essential to persevere, she says. As well as having a goal in mind. "If you have a purpose , you can work towards it. Formulate a goal as concretely as possible. And realize that motivation and dedication are part of it. Otherwise it is not a goal, but a dream. I used to want to be a prima ballerina, but I got distracted and didn't work hard enough for it, so that was more of a dream than a goal that I had the motivation and dedication for."

Perseverance can be developed. The brain is capable of physical deformation, in both a negative and positive sense. This principle is called neuroplasticity. “You yourself influence the formation and functioning of your brain: through your behavior, the things you expose yourself to and through the people you hang out with.” People often think that perseverance is something you either have or you don’t, but “that’s complete nonsense,” says Sitskoorn. The neuroplasticity of the brain makes it possible to develop this skill . However, it takes – of course – time and attention. As Sitskoorn says: there are no quick fixes for major problems. Learning new behavior can take years.

Because doing something differently than you are used to costs a lot of energy. The brain is a relatively small organ that has a lot to do, busy with everything it has to control in the body. That is why it likes to use automatisms, Sitskoorn explains. You no longer have to think about breathing, walking and brushing your teeth. Such an action is repeated endlessly, which creates strong networks in your brain that ensure that you always behave the same in a certain situation. Sitskoorn: "So if you decide that you want to approach something differently from now on, you have to be aware of it every time that automatism occurs and replace it with different behavior."

Forbidding yourself to do something often doesn't work, she says, so: come up with an alternative. Suppose you don't want to get angry at your child anymore when he knocks over his glass at the table. Replace the snapping with whispering or giving a hug. Through a lot of practice and repetition you will slowly develop a new automatism.

In some cases, someone can only start to persevere after first solving other problems (with help). Sitskoorn mentions a poverty project she works on. “We started with grand plans, but once we got to someone’s home, it turned out that we first had to clean up the garden, clean up the house and find the right care for a child with a condition. So that someone gets space in their head to be able to persevere.”

A concrete goal

Nine years ago, Remyo Tielsema (34) from Utrecht suffered a brain hemorrhage. He went from a fit twenty-something with an office job and weekends full of festivals and sporting events to the emergency room, two weeks in a coma, three brain surgeries and two years of rehabilitation. Learning to walk, eat, talk again.

Every day he was confronted with everything he could no longer do. He was constantly trying to persevere "to become his old self again". After six months, while walking around the park, he said to the physiotherapist: "Next year I want to run a marathon."

A rather concrete goal, Sitskoorn would certainly approve. Tielsema: "In retrospect, an unrealistic thought, my body had suffered a huge blow. But this plan was very important to me. Rehabilitation is hard work, with progress and setbacks, but I knew what I was doing it for." He also drew a lot of strength from a statement by Nelson Mandela: "A winner is a dreamer who never gives up."

"I read that quote daily and it helped me enormously to keep going." Remyo had hope and believed in himself - that mentality also gives strength, say both experts. Almost four years after the brain hemorrhage, he ran his first marathon.

Remyo also benefited greatly from the support of family and friends. “My mother and my girlfriend were there every day during the rehabilitation period, for two years. The other one doesn’t have to do anything special. The only important thing is that people come over, all my friends did that too. A little chat, watching TV together. The very simple things were the important things.”

Remyo worked hard for where he is now, had a goal, with dedication and motivation. Admirable, certainly, says psychiatrist Dirk de Wachter, but we should not only focus on the heroic stories, he believes. "It should not be a competition, let's not use categories of people with a lot of perseverance and people with less perseverance."

Often people do not feel better after they have become ill, he sees in his practice. They have to take a step back. They are also somewhat disappointed in existence. "If you lose a child, or your legs no longer work, then it is often a long search for what makes life worth living. In the meantime, you survive a bit and try to treat the people around you with love, but it will never be the same again."

acceptance

That is also part of Tielsema's story. He has permanent neurological damage: aphasia, no vision in his right visual field (hemianopia) and epileptic seizures. Only when he accepted that he would never be the same again did he really make progress, physically and mentally. He accepted that he could no longer do his full-time office job and started working in a specialized running shoe store. Three days a week, so that he has enough time to train and rest.

Last year he ran a new personal record at the Berlin Marathon: 2 hours, 12 minutes and 42 seconds. Remyo runs 42 kilometers at a speed of almost 20 kilometers per hour, which is exceptionally fast. As if the perseverance he developed during his rehabilitation could propel him further than ever.

A strong social network, a goal in mind, motivation and belief – there is no set recipe for perseverance, but there are a number of ingredients that recur in the stories of perseverers. This is perhaps the most important: acceptance.

It took Remyo a long time to learn to speak again and to put his story into words and to tell it to the outside world. "But now I know: by talking about it, you get so much more support and respect for who you are as a person."

Acceptance also played a crucial role for Elsbeth. During her darkest months, she was stuck fighting what had happened to her: "I wanted to live, but I didn't want this life. I was only 22 and I felt like I should be having a nice life, sitting on a terrace with friends."

Only when she accepted that she had become a young widow and that she had no future with Niels, and embraced that he would always be her first husband, there was room for love again. Last year she married Mathijs. This summer they are expecting their first child.