A thought lingered briefly in her mind. Euthanasia.

Angèle Schaminée is staying at a house in the country just outside of Breda. Chickens and a peacock roam around freely. From the window you have a view of the forest and countryside. It’s not Angèle’s house. She can only live there temporarily while an acquaintance of hers is on holiday. She doesn’t have many friends any more.

Text: Henk van Straten
Image: Mirella Steenhof

“Over there,” she says, pointing to the white van in the driveway. “That’s my home.” At one time, she owned a nice house. But she was forced to sell it. She tells us about it while sitting on the sofa in this bright living room, holding a glass of tea in her hands. Winter sunlight is pouring in through the large windows. A cheerful face, energetic voice. But a pink jumper and a somewhat wide pair of jeans can’t really hide the fact that Angèle is skinny. Too skinny. It’s all connected. The van, the house she had to sell, the many friends she’s lost track of (or perhaps the other way round: who lost track of her).

Her career as a lighting technician started early. Secondary school in Breda – she started out at a ‘gymnasium’, a kind of Dutch sixth form college – was not a nice place. She was bullied, didn’t fit in and then transferred to the Dutch ‘HAVO’ secondary school stream. Through various channels, she came into contact with people from the world of light and sound technology. “The guys took me along to jobs. They accepted me as I was. I worked as hard as they did, or even harder.” In her spare time, she would sit and solder cables for extra income in the room she was renting.

Angèle went along to major productions and decided to quit school. She helped with the assembly, dismantling and lighting for festivals and dance events. She picked up everything very quickly. In no time by the age of eighteen, she had managed to become a freelance lighting technician. “I liked doing the lighting for bands best, so that’s what I focused on. Being part of a group, of that dynamic. The very first job was a performance by the group ‘Is Ook Schitterend’ in the Heineken Music Hall. Do you remember that band? From that song, ‘Voltooid Verleden Tijd’.” Her eyes sparkle when she talks about it.

Not only did she do the lighting for live music, but she also designed complete lighting plans. When she was 19, she did most of the jobs for a company called Purple Group, which specialised in light and sound productions. They sent her on job after job. Angèle could do anything, and if she couldn’t do it yet, she could master it after watching them once. At 21, she was already responsible for the complete technical lighting production of Extrema Outdoor. In that world they knew she was the one to have, even if that enthusiasm would fade at some point.

But at that time, Angèle still had everything going for her. “Going on tour with a band seemed like a great idea at the time,” she says. “Like being on tour with a new family. When I was a freelancer for six months, I went on tour with ‘Is Ook Schitterend’. After that, I toured with bands like ‘Het Goede Doel’ and ‘Bertolf’ and Roel VanVelzen. In all those years, I never saw Roel in a grumpy or unpleasant mood. He was always positive and full of energy. That period was truly about rock ‘n’ roll. On workdays we were on location at least 12 hours into the night. Afterwards, we’d all meet up at the hotel with the crew and empty our bottles of whisky.”

At that point, Angèle had already uncovered all the mysteries of lighting technology. “I was ready for a new challenge, so I started backlining. That means arranging everything like the instruments and amplifiers for a band.” In other words, working with musical equipment in the broadest sense. Angèle then mastered that aspect of the music world, too. She worked with Milow. She even tuned the guitars. She also took on jobs as a tour manager. In fact, you could have had her produce a complete concert on her own. She joined the regular crew of Miss Montreal as a backline technician. Every night, she went out with the same group of people. During the day, she was still designing technical lighting plans. She earned a good living. In the meantime, she had also bought her own house. She drove a nice Volvo.

But you can already feel it coming, can’t you? Those two fateful words… But then…

The year was 2016. For the previous ten years, Angèle had been working as a lighting technician, designer, technical prep worker and backline technician. She hardly had any free time and she didn’t need it, either. Once a year, on 31 December, she took a (cheap) plane trip to go on holiday for a month. The company she did most of her work for asked her for the umpteenth time if she wanted to work for them permanently. She thought about it during her month’s holiday in Australia. It might be smart after all, she decided (“that rock ‘n’ roll lifestyle would have to end sometime, of course.”). She joined the company for thirty-two hours a week. Only lights; she wanted to keep doing music technology on a freelance basis.Accidents await around every little corner. While building up a set, a flight case hit her head, a heavy box with metal corners. A colleague was trying to put the box on a rack when it hit her instead. “I knew immediately: this is not good. I had an enormous headache and felt nauseous. I was pale as death. But I still continued to work that day. It’s very hazy when I think back. I could barely sleep. The next day, at the Heineken Music Hall, I couldn’t stop throwing up. But I kept on working. It must have been because I slept so badly, I thought.” It was only after three days – when the symptoms had not subsided – that she went to see her GP. It would be the first of countless medical appointments that would follow. Most of them frustrating, unsatisfactory, disappointing.

“The GP thought it was a concussion. I called in sick. But it didn’t go away. I went back to work 50% part-time anyway. For half days, always believing that I would get better, and because I didn’t know what else to do with myself at home. At work I went around wearing big sunglasses because I couldn’t stand the light any more.”

Hypersensitivity to light was only one of her disabilities. Angèle could no longer tolerate anything. The smallest of sounds. She points to the wood burner in the living room: “The crackling of that fire, that would have driven me mad then.” Her short-term memory was also affected. She could no longer do any calculations. What used to take her an hour now took her four. But perhaps the worst part of all was the vomiting. She couldn’t hold anything down. She would vomit about sixty times in one day. “My teeth are fake,” she explains, bravely, matter-of-factly, without embarrassment. “My own teeth were eroded by the stomach acid.”

“That’s when things got dark. I was crying like a baby.”

“I withdrew more and more. Avoided people. I didn’t want to see anyone out of shame.”

The beginning of a nightmare.

The symptoms didn’t go way. The doctors had no answers. The neurologist said: we can’t see anything on the scans. After every consultation – always with weeks or months in between – she went home empty-handed, and sometimes with the terrible feeling that she was not being taken seriously. That she was suspected of faking it.

“My social life suffered. I couldn’t go to parties any more, the stimulus was too intense. Even one-on-one, I was burnt out after half an hour. I withdrew more and more. Avoided people. I didn’t want to see anyone out of shame. Afraid of not being understood and being judged. I became more and more lonely.”

After a year, she received a call from the hospital. Despite the severe symptoms, she had been working for Miss Montreal. The person on the line told her there was nothing more they could do for her. And that was it. She had to learn to live with it. “That’s when things got dark. I sat there crying like a baby.”

The spiral circled further and further, deeper and deeper, into a dark void. Just when she thought she had reached rock bottom, she would reach a new low. Miss Montreal’s management informed her that they would stop working with her.

The people around her seemed to turn against her rather than sympathise with her. Her employer also refused to believe her. “That was the worst thing, people’s attitudes. We can’t see anything wrong with you. That mistrust, that suspicion. It damaged my trust in people. Friendships in that world turned out to be much more superficial than I had thought. It was as if I had made up my mind: I’m just going to take sick leave now! I postponed it for two years, until it really wasn’t possible any more. If you knew me, and they knew me, then you knew how hard I worked, how passionate I was about it.”

The battle between Angèle and her employer began. “I hired a lawyer, but I was warned of a nasty war ahead. I had no desire to go through all that. I wanted to come to a mutual agreement. It became a three year tug-of-war between insurance companies. The outcome was a pittance that didn’t even compensate for my medical expenses and financial loss.”

The ground kept crumbling beneath her feet. Angèle sank deeper and deeper into loneliness, pain and misunderstanding. There was no more band work. At home, she sat around with the curtains closed. Vomiting and vomiting. Long, lonely days. “I was ashamed, so I didn’t bother getting in touch with anyone.”

America, that was where she needed to be. There, they took symptoms like Angèle’s seriously. There was even a clinic for traumatic brain injuries (TBI). A few days after she signed up for this expensive treatment, she received the phone call that Miss Montreal was going to continue with someone else. Angèle’s savings were nearly depleted. More than half of her income was gone. There was only one thing she could do: sell her house. “A very difficult decision. I had worked really hard for that house.” Now she had truly lost everything.

The strange thing is: Angèle was speaking about it cheerfully, energetically. It was thanks to her personality, so strong, optimistic and hard-working, that she was always able to keep going in the first place.

Even though it was a difficult decision, selling the house was the only right thing to do. She could stay in her uncle and aunt’s house for a month while they were on holiday.

And then she flew to America. Just the reception at the clinic felt like a warm hug. No one acted like she was crazy there. No one thought she was faking it. They slid her into machines, had her perform actions in an MRI scanner, looked at all the connections, the parts of her brain that lit up. When Angèle heard the results, she was overcome with relief. She was not crazy, she had very serious brain damage. “Look,” she says, showing a few graphs. “My score is higher than virtually everyone else they treat there.”

“Finally, there was an expert saying: what you have is real. It was as if a curse had been lifted. The ‘we can’t see anything wrong with you’ curse.”

EPIC Treatment is the name of the American clinic’s treatment method. The results speak for themselves, but here in the Netherlands it has not yet been medically proven. This involves linking a whole range of exercises together in order to create new brain connections. A combination of cognitive exercises and complex interval training. Breathing, brain waves. Improvements can only be made by looking at the big picture. “I felt progress after only four days.”

The treatment in America lasted a week. After her stay, Angèle returned home with a flush of gratitude and hope. She would continue doing the exercises every day at home. Every day she would feel a bit better.

But it didn’t turn out like that. The magic had quickly worn off. Yes, her cognitive limitations had improved somewhat, but they had by no means disappeared, and the vomiting was as bad as ever. Besides, she was back in the Netherlands, with her aunt and uncle. The rural, caring environment of the clinic in America was far behind her. In America, they had made a diagnosis for the vomiting.

So Angèle started out on another medical journey. A period of uncertainty that lasted six months. Eventually, four years after the accident, the diagnosis was confirmed in the Netherlands: Rumination Syndrome. A rare, motor disorder that causes you to throw up repeatedly after each meal. Caused, they believe, by severe trauma. In the Netherlands, this is hardly known and there is no suitable treatment. The question was whether she could live with the constant vomiting. With a spit cup constantly at hand. Living with throat bleeding when the vomiting got too intense, meaning she couldn’t talk or swallow for a week after.

“The prospect plunged her even deeper into loneliness. Despite her optimistic nature, a thought had long been lingering in her mind.”

Euthanasia.  

The symptoms didn’t go way. The doctors had no answers. The neurologist said: we can’t see anything on the scans. After every consultation – always with weeks or months in between – she went home empty-handed, and sometimes with the terrible feeling that she was not being taken seriously. That she was suspected of faking it.

“I had already discussed it with my GP earlier, but now I was ready for it. We talked about how it all worked. In the end, I decide to give myself another year. One year to see what time would bring, although the very thought of it made me feel despair.” Yet her flame of optimism was still burning. Not to mention her work ethic. She decided to learn all about the brain. Her brain. She also decided she wanted out. She exchanged her orange Volvo for a Volkswagen van.

She now lives in this van, in a country that did not understand her and where she lost her passion, where she lost weight through vomiting and saw her health further deteriorate. Maybe she wanted out of life, but she certainly wanted out of the country first. She had bad memories here, too many traumas. She drove to Scandinavia in her van. “I wanted to think, to go out into the woods.” She spent many long days and freezing nights in her van.

She emailed the clinic in America. “I am at the end of my ropes,” she told them. “If you know anything else that can help, please let me know. Because I can’t learn to live with the vomiting. She received an answer: please wait, don’t give up on life just yet, we’ll make a plan. Soon thereafter, she received the recommendation. She was asked to return for four weeks for a comprehensive treatment. The flame of hope was burning a little brighter again. But if that one week had been so expensive, this four-week stay would cost even more. A friend that she had reconnected with encouraged her to try crowdfunding. “No, I thought, I don’t want to beg for money.”

But something had happened in Scandinavia. The option of suicide had triggered something. “I thought: I have nothing to lose, what do I have to be ashamed of?” So she did it. Crowdfunding. She got the money she needed within a few days. “I wasn’t expecting that – that people would feel so sorry for me. I was very grateful for that.

She was off again. Back on the plane. Again there was this feeling of coming home, this feeling of hope, the acknowledgement of her brain damage. In the end, she was in therapy for seven weeks. Her memory improved, her hypersensitivity diminished. Those symptoms did not disappear completely, and may never, but she could live with them. And that is exactly what she is doing now. She doesn’t eat breakfast or lunch any more. “Then at least I don’t have to vomit during the day. But in the evening I have to eat much more than I’d like so I make sure to get enough calories. So I also throw up a lot.” A social life in the evening is virtually impossible. Learning to live with it. That is now the theme of Angèle’s existence. Euthanasia is no longer an option. Her earlier study of nutrition, together with the wealth of knowledge she has gained about the human brain, has even led her to start her own business: MindTrition. She wants to counsel people on the sophisticated mix of nutrition, vitamins and minerals they need to function at their best every day. Her motivation and determination are stronger than her body can handle. That makes her uncertain. But she does it and she wants to do it. A fresh step, thanks to her own willpower and entrepreneurial spirit. And also thanks to the medical knowledge she has acquired over these last six dark years.

Her motivation and determination are stronger than her body can handle

The shame is gone – that heavy burden that had been weighing her down.

There is a zest for life, she can laugh again. She would prefer to live in America, in the Salt Lake City area, and work from there. There is too much pain, too much sorrow here.

But for now she goes for walks. In the woods. In the winter sun. Sometimes it’s all okay for a little while. Tomorrow is another day. If anyone can manage to live under these circumstances, it is Angèle. “If you interview me again in a year’s time,” she says cheerfully, “I hopefully won’t be vomiting any more.”