Onno Bosma interviewed Zoraya ter Beek for the KEA foundation, combative on the way to her euthanasia.
'People want to be able to see that you are suffering. That you cry, wear baggy sweatpants, that you look unkempt. I always think: just take it from me.'
Update April 9, 2024: Read Zoraya's shocking experience with the SCEN doctor at the bottom of this article
Zoraya ter Beek (2
spoke on September 26 last year during a conference on euthanasia for psychological suffering, organized by the brand new KEA foundation. She was introduced by one of the founders, psychiatrist Menno Oosterhoff. "Don't let her appearance mislead you," he warned. 'If Zoraya does not qualify for euthanasia for psychological suffering, no one would qualify for it.' His warning was not superfluous. On stage in Veenendaal stood a resolute woman, carefully made up, dressed in a beautiful blouse with bare shoulders and bright blue jeans. She told her story in a clear voice, which she regularly interrupted with a laugh. She did not pay much attention to her suffering, but much more to her ordeal. After ten years of being treated in vain for various diagnoses, she reported to the Euthanasia Expertise Center at the end of December 2020. It would take more than two and a half years before she received the first green light for her euthanasia request. That was a few weeks before the conference. She then had two green lights to go. Her message was clear: the euthanasia law is well drafted, but there are far too few people who want to be involved in its implementation. How little was evident from the fact that there were only a handful of psychiatrists in the room.
After the conference I started following Zoraya on Twitter, where she has had an account since early 2022. She has been trying for a long time to convince her approximately seven thousand followers and the average of many tens of thousands of readers of her tweets that she has no other option but to end her life. She posts increasingly impatient and fierce responses to pleas from people who want to persuade her to abandon euthanasia. Since the conference in Veenendaal, she has received attention in the media, appears on RTL television, and receives three pages in the magazine Mijn Geheim. At the end of last year she cleared her Twitter page, now X. She now only wants to describe the progress of her euthanasia process. 'NO 'medical' or 'divine' advice' she warns in her profile to people with a 'rescue syndrome', as Mandy, now deceased, called it in my previous interview for KEA. Zoraya read it and recognized a lot of herself in it. Not least because she, like Mandy, has tried everything in vain to cope with life. And just like Mandy, she eventually had to give up those attempts, only to end up in years of legal proceedings to have her death wish recognized as inevitable. She wants to do everything she can in the time she has left to help people who want to put an end to the long waiting lists caused by the small number of psychiatrists willing to be involved in the procedure. "You have become a real warrior," I say to her at the end of January in her home in Twente where I interview her and her partner Stein for KEA. “Yes, a bit of a figurehead,” she admits with the same laugh I heard so often in Veenendaal. 'Not on purpose, by the way. But I'm good at giving my word.' She points to her face and says that she always puts on makeup when she has to deal with other people. Just like again for this interview.
She summarizes the process she went through after registering with the Expertise Center. Less than a month after that report, she received a letter in early 2021. 'That was wrong! Because I knew from experience that the center normally took much longer to assess the files. The letter was therefore a provisional rejection. Something was wrong in my file. There was a psychologist at the Mental Health Service who doubted whether I really have an autism spectrum disorder. That comment ended up in my file and that is why the Center was not sure whether my diagnosis was correct. And they need to be convinced of that, otherwise there might be treatment options left. So then I had to reaffirm what my diagnoses were. I've been working on that all of 2021. There are also waiting lists for such a diagnostic process.'
Five diagnoses
She laughs again. 'I have five diagnoses. Traumas I suffered in my youth. An anxiety disorder, agoraphobia due to bullying. At school I was always looking for a small, safe place. Chronic depression. And what they call an unspecified personality disorder. In December I was able to send all the files again. Shortly afterwards I called the Center to see if everything had arrived safely. And then I was told that they could immediately schedule an intake. Yes, it can take a long time at first and then you get the right person on the phone and then suddenly it can happen quickly. The intake was in Utrecht in February '22. I went there with Stein. It is a kind of job interview and a lawsuit at the same time in which you have to explain again why you want euthanasia. But euthanasia is not a matter of wanting to, but of not being able to continue, not seeing any other way. I found the intake very exciting. This could lead to them still rejecting you. For example, because you have not had certain medications or therapy. Or because you are incompetent. They can also say that they will put you on the waiting list for euthanasia, but that you still have to undergo therapy in the meantime, which they call the two-track policy. But luckily for me the third option applied. Then they acknowledge that you could receive euthanasia because of your file. So not that you actually get it. It is not the first green light. They are very careful, weigh their words carefully.'
She again had to deal with a waiting list. It would take a year and a half, until July 2023, before a team was finally available at the Expertise Center, a psychiatrist and a psychiatric nurse. Two conversations followed with her and Stein at her home. The result was positive: her death wish was understood. The first of three green lights. The second had to come from an independent psychiatrist who gives a second opinion. A few days after the interview, January 30, she would have the conversation for the second opinion in Zwolle, so after the first green light another delay of almost six months. There are also too few psychiatrists for a second opinion. On January 30, Zoraya sent me a message that the second opinion had a positive result: the second green light. The third must now come from a SCEN doctor (Support and Consultation in the Netherlands). This tests whether the due care requirements in the Euthanasia Act have been met. She explains to X that she will wait a little longer before calling in the SCENarts. She has a desired date in mind for her euthanasia and once the third green light has been given, which almost always happens, the euthanasia must be given within six weeks. If that period expires, a new conversation is necessary.
Suicide?
I ask if she ever considered killing herself when the whole process took so long. With great finality she says, “Oh yes. I have a backup plan. Right from the start. I also knew that there are approximately eight hundred registrations per year at the Expertise Center and that only ten percent of them are successful. And that you have to deal with those waiting lists. But for myself and my loved ones, I wanted to take that small chance. During the intake, the psychiatrist asked: what if we cannot help you? I answered honestly that I would take the final step myself, after all, that was already in my file. But I quickly added that I didn't mean that as a means of pressure, as some kind of blackmail. I saw that the psychiatrist could not suppress a small smile. He said that they shouldn't hear any different and that they would find it more special if I said that I would then continue living happily.'
She smiles again, beautiful teeth flash between her red lips. I remember Oosterhoff's warning: don't be confused by Zoraya's presentation and I ask if she will try to make me feel how heavy her suffering is. In response, she takes out her file: 'At one point I had to write down why life is unbearable for me. It is quite difficult to make that tangible for people. So that they understand.' I read the document she presents to me.
When I was eighteen, I sought help from the mental health service. Time passed, diagnosis after diagnosis. A lot of medication that often did more harm than good. Different therapies, some more useful than others. And as a final straw, the ECT (Electroshocks, OB). Lost memories, memory damage and concentration problems were the result. The hope of recovery, the hope that kept me going, evaporated. Unfortunately, the damage done in the past turned out to be irreparable. My genes/predisposition, personality, bad luck and life experiences appear to be a toxic cocktail. I am anxious, tense, distrustful, suicidal, damaged…I am hanging together with tape, staples and string. Always that threat that everything will let go, collapse. Never being able to be the person that I wish myself so much, that I wish to be! Everything costs me mountains of energy. The thought that this is the best achievable for me, that this is my life, my vision of the future, is unbearable. (…) The thought that I still have 10? 30? 60? years later, it paralyzes me. There is nothing more I can do to improve that quality. Not on a medical or personal level. Because I have a nice house, a partner worth his weight in gold, cute cats, people living around me and yet I ask for euthanasia. I feel that something is going wrong, I am empty, exhausted, defeated. Every day is a fight against the gloom, the fears, the negativity. Every day that fight feels bigger, harder, more impossible. There will come a day when I no longer have the energy and willpower for that fight. I want to be ahead of that day, for myself, my partner and my loved ones. (…) It is not a matter of wanting to die! It's a matter of not wanting to be sick anymore, not being able to fight anymore. It frustrates me that I have to fight for it (euthanasia, OB) so much, that I have to beg for it. Purely because I am invisibly ill. But I am ill, terminally even.
An insecure, anxious child
I let her text sink in for a moment and then ask about the years before she started asking for help, the years of her youth. She describes herself as an anxious, insecure child who was bullied in both primary and secondary school. Her parents and three sisters did not understand her behavior and could not deal with it well. That led to removal. When she was sixteen, the counselor at her pre-vocational school became concerned. 'She noticed me, she saw that I always wore long sleeves to hide the fact that I was cutting myself. Unfortunately, I confided in her, at that age someone like that should inform your parents. From then on I thought it would be better if I didn't talk to anyone anymore, that would only get me into trouble. I found it difficult to trust care providers, I was afraid that it would lead to greater distance between me and the people around me. It remained that way until I met Stein two years later. He then worked in a Mexican restaurant where I sometimes got food. I thought, I want something with that boy. We started talking, exchanged 06 numbers and one thing led to another. I was still 17 at the time and he was 28. My parents had difficulty with the age difference. That made the bond with my parents even more difficult. Too bad, because now that he is 40 and I am 28, such an age difference is very normal. I thought, great, now I have my own place, now I have peace, someone who loves me, everything I need, everything is going to be fine now. But after a few months I still didn't feel better. So then I went to the GGZ. Because Stein encouraged me to seek help. You're to blame," she laughs. She says that during therapy it turned out that it would be better for her recovery to take a break from contact with her parents. And also led to a break with her sisters. 'That interruption of contact has unfortunately now become a rupture. I still think about that sometimes, in view of what is to come, my death. My father unfortunately passed away last year, but my mother and sisters are still alive! I would never want to deprive them of the opportunity to say goodbye to me, but I leave that up to them, that is their choice. I would only hate it if they looked back on this whole thing with regret in ten years' time.'
I imagine Stein quickly noticed that his love was depressed. 'Well…, at first I mainly saw her anger. She could suddenly explode at unexpected moments. While she is a good person. She always wants the best for others. But some things I didn't see until later. That she cut herself, for example.' Zoraya nods. 'I also managed to hide it for a long time. Then I made sure my watch strap was in exactly the right place. I also very rarely cry. Even my psychiatrist has only seen me crying about three times. Stein almost never too.' Stein says there were times when she was overflowing with despair. But it took him a long time to realize that she had suicidal tendencies.
Zoraya: 'I tried to protect him by not showing how bad it really was. It took me a long time before that dawned on me. For me, cutting had actually become normal. I really had to learn that that is not normal.' "Once you knew, Stein, were you really shocked?" 'At first yes, but gradually I got used to it. Especially because I know what's behind it.' "Did you ever get mad at her?" He hesitates, searches for words. Then: 'Don't be mad at her. On her sick one. I had experience with it too. My mother became overstressed and suffered from psychoses until her death, more than ten years ago.' Zoraya: 'I keep the people around me out of it as much as possible. Stein sometimes got reactions, poor man, he should run away. But we've been together for ten years, so of course it can't just be misery. You can see that I'm quite a nice person.' She takes his hand. 'He got those reactions because he was featured once in a German documentary, which fortunately is no longer on You Tube. He didn't care about that himself, he thought, what do those people know about it? But those reactions hit me ten times as hard as when they are directed at me. They think I'm selfish. That does affect me, by the way. Just like when religious people say I'm going to hell.'
After all the medicines and therapies, the electroshocks, officially ECT, Electro Convulsion Therapy, were the last option for Zoraya. "She had set a limit for herself very shortly after she turned to mental health care," says Stein. 'She gave the practitioners ten years and if it still hadn't worked, it would certainly have gone in the direction of I can't live anymore.' She received ECT twice a week in the first half of 2020, 33 treatments in total. Zoraya: 'You should be able to notice a difference around the tenth treatment. That wasn't the case with me. Then the voltage goes up. I still didn't feel any improvement, but I really wanted to continue for as long as possible. Until the doctors said that the risk of permanent damage to my brain was too great. By the way, it's already there. For example, I haven't been able to work since then. After school I always went to the same decoration store. My memory is too bad for that now." I ask Stein if he had much hope that the ECT would help. "Actually, no. At the beginning of all treatments with medicines and therapy, yes. But things got worse little by little.'
Zoraya says the second half of 2020 was a mourning period. 'In fact, everyone knew what it meant that the ECT did not work. I've always been very clear.”Stein shakes his head. 'For me, euthanasia was still so far away that it didn't really occur to me.'
Countdown?
I ask if they are now counting down, after the first green light and the upcoming conversation for the second opinion. Is their life now dominated by Zoraya's impending death? She laughs again. 'We are definitely not just sitting on the couch waiting. But an additional realization has emerged. We are more aware of the passing of time. And I have little energy left. I often sit inside all day in my house suit, without any makeup on, under a blanket on the couch, with the cat there, and I watch a lot of series. Reading is no longer possible since the ECT. We go shopping together twice a week. I have to force myself to do this, otherwise I could just stay inside all day. As soon as I'm outside, I actually start the panic reaction, my heart rate goes up, I pay attention to every sound. I always call Stein my seeing eye dog. Alone on the train is really not possible. But the more you give in to your fear, the smaller your world becomes. I've never been on vacation. A weekend at the seaside already gave me too much stress. That's why Stein has been going on city trips alone for the past two years. Then I also have a holiday.' Smiling at Stein: 'Holiday from you.' Stein: 'Fortunately I have my job as a software developer. Three days at home, two days at work. It's nice to work from home, but I'm not going to sit on the couch with her all day. There have been some difficult moments lately, sometimes I feel distanced, because I am sad myself, so I pay a little less attention, even though I don't want that...'
Do you ever think about Stein's life after Zoraya's death?' After a somewhat awkward silence, Stein says: 'I'll try, but I find it difficult to imagine what it will be like. Yes, it will take some getting used to. Suddenly alone. That seems very strange to me.' Zoraya puts an arm around him and rests her head on his shoulder for a moment. 'Yes, then there will be no one on the couch when you come home and ask how work was. No texts.' I ask, "Do you have people around you, Stein?"
'My father, my brother. They are next to me. And my best friend. But he just had his first child, so he won't be able to come every day. And I was offered a psychologist at work.' "Are you going to accept that?" 'If I need it, yes. When I talk about it I notice lately that it is difficult to deal with it. But I don't really notice any negative effects on myself.' I ask Zoraya if she is comfortable about his future. Her answer comes quickly: 'Yes. Of course, I would have preferred to experience it myself. But he can handle it. He's a hottie, has a good job. There will certainly be someone who can try to fill my place. They are also very flexible at work. If he needs time off he can get it. And if he wants to be home that last week, it's no problem at all.'
Zoraya says that she is already getting rid of her things: 'If I don't do that, Stein will have to clean it all up later. He did ask that I donate all the clothes to charity, which means he will soon be left with an empty closet. He also wouldn't want me to quickly throw all the things in the bathroom, my make-up for example, into a garbage bag on the morning itself. You don't want to sit in a Zoraya-free house, do you, Stein? But actually I'm trying to ensure that he doesn't have to do anything anymore, except throw the cards in the mailbox. I still want to make and write it myself. There are people who want something from me as a souvenir, such as my do-not-resuscitate-me medal, which is for a friend.' She points to her chest, the medal hangs demonstratively above her clothing, like a kind of trophy. With a mischievous smile she says that Stein wants her cuddly toy, an elephant.
It will take a long time
They hint that the wait is starting to take a long time now that it is almost certain that Zoraya will receive euthanasia. Stein says it will bring him peace when the time comes. 'But on the other hand, every day is another. We have time to say goodbye. And at the same time I see that the quality of her life is deteriorating every day. That's something I don't want. Zoraya's aunt, the only family member who supports her, said she will be relieved when the whole thing is over so she can grieve.' I ask, "Can you handle hearing something like that, Zoraya?"
For the first time she sighs. 'I find it difficult. My aunt is very direct, but I know she means no harm. And now that the end is approaching, I notice that it is really a burden for my loved ones.' I ask her if she already knows who she wants with her when the time comes. 'Basically Stein. But I leave the choice to him. Maybe it's too heavy. I wouldn't mind being alone. The doctor is of course there, that is the psychiatrist from the first team. That's a very nice woman.' "Do you know yet, Stein?" He hesitates for a moment. Then: 'I want to be there. Whether I can do it is another matter. But if I can afford it: yes. I think so. Yes.'
Zoraya's shocking experience with the SCEN doctor
'The planned rest month of April has been taken away from me.'
March 25 '24.
"Today the SCEN doctor came," Zoraya ter Beek posted to her eight thousand followers on X. She added: "Spoiler: drama…"
She didn't say too much with that.
Her friend Stein was there when the doctor asked if her partner was not nice enough. And he was surprised at the order and cleanliness in the house, because he often came for a SCEN visit to people whose house was a mess.
Had she and her partner ever thought that they could just pack everything up and leave for Australia? "Well," Stein had replied, "We once did a weekend in Belgium, but she came back more stressed than when we left."
Zoraya writes in her X-post:
'During the conversation there was clear irritation between him and us. Whereupon he decided it was better to stop the conversation. To which I asked emotionally what I did wrong. We gave a polite answer, didn't we? He said he asked questions, but didn't really get into them. (…) He was full of prejudices and even said out loud that he didn't think I would go through with it if he agreed. My answer was that I already have a coffin and funeral card.
(…) We felt completely unheard and not taken seriously. What a world of difference with the doctors of the Expertise Center and the second opinion!
When the doctor left the door, I literally collapsed on the floor and had a severe panic attack, and I was also “away” for a while. Stein acted like a hero, sat behind me on the floor and held me tightly. He knows what to do after ten years.
Once back on earth, I contacted my team to explain the situation (…) Conclusion: they were also shocked by what I said. They must wait for the SCEN doctor's report. Then they can request a new SCEN doctor (...) All in all, we are now two to three weeks further. Even more tension (…) I'm now taking my emergency medication and crawling onto Stein's couch.'
April 4, '24.
Zoraya sent me an email message:
'Hello Onno,
The first SCEN issued a negative.
Which in itself wasn't a surprise considering how the conversation went...
I have not yet received that report and am not allowed to share it, unfortunately.
Obviously that is not the news we wanted to hear and the news was especially difficult for Stein, because he was afraid and absolutely did not want me to do it myself so that I could go on my desired day...
His emotion touched me so much...
That we have agreed on a new day together if the desired day turns out not to be feasible...
A second SCEN doctor has been found, a psychiatrist this time! But that is only possible in three weeks, so that will be very tight with my desired date.
My psychiatrist from the team will contact this new SCEN to see if I can be squeezed in somewhere sooner.
For example, the planned April rest month is being taken away from us by an incompetent SCEN/GP.
Of course that stings! But there's nothing you can do about it...
We'll just have to wait and see, who knows, maybe my wish day will work out just in the nick of time! And otherwise we are at peace with the new chosen day, because it also has a beautiful and personal meaning in itself.
My friends who preceded me in a euthanasia process indicated that the last few weeks (with three times of agreement and date) had been their best weeks in years! They felt the burden lifting. Of course, I had also hoped for that with some cautious curiosity. That I could also experience that peace.'
The medical federation KNMG writes on its website:
'The SCEN doctor's opinion is not binding. This means that the doctor who has received the euthanasia request retains his own professional responsibility. However, he must always discuss the content of a negative assessment with the SCEN doctor. He may also only set aside this judgment if he can provide sufficient reasons for doing so. After all, the SCEN consultation is precisely intended to reflect on the doctor's own judgment. If in doubt, it is advisable to consult a second SCEN doctor.'
