On July 13, we left with the family and adherents by plane to Johannesburg. After an incredibly beautiful tour, we arrived in Franschhoek on July 28. The next day, the wine tram was planned. A unique experience. We all immensely enjoyed the beautiful weather that day while tasting delicious wines. The next morning, Raymond had a slight cold and felt a bit flu-like. It didn’t seem like anything to worry about. He felt well enough to drive us from Franschhoek via Stellenbosch to our final destination: Cape Town.

When we arrived, he indicated that he was having a headache and decided to lie down on the bed. We went shopping because we hadn’t had lunch yet. My father came downstairs to eat a little bit. He went back to bed and suggested that we explore the city. He expected to be well enough the next day for all the other activities we had planned.

He skipped dinner and was still complaining of severe headaches. Despite the painkillers, the pain would not go away. Because we thought he was having flu symptoms, my mother decided to sleep separately so as not to be infected. Around 1 a.m., she went to check on Raymond. She found him confused. He was muttering incoherently and said he hadn’t slept at all. When he went to the toilet, he almost collapsed. He had trouble keeping his eyes open. He felt extremely ill at that moment.

My mother woke us up, and we decided to bring Raymond to the hospital. It took a lot of effort to get him dressed, and we had to carry him downstairs. In consultation with the hospital, we drove to the emergency room ourselves, as it would be faster than calling an ambulance. It was 2:30 a.m., and he was immediately taken away for a medical examination.

The doctor initially suspected malaria, because we had spent the night in Kruger Park. When it proved not to be malaria or pneumonia, meningitis was raised as a possibility. Out of precaution, he was immediately given antibiotics and a lumbar puncture was done. Later that evening, it was confirmed that it was indeed meningitis.

On the doctor’s advice, we left and returned to the Intensive Care Unit early the next morning. Upon arrival, we were told that it was a serious situation. My father had slipped into a coma and his condition was critical. It turned out to be bacterial meningitis. Possibly caused by a streptococcal bacterium, but that had not been confirmed at that time.

During the first few days, Raymond still responded to touch and pain stimuli, but later this response stopped. There were no neurological improvements. A CT scan showed visible damage to the brain stem. It was a life-threatening situation. The only little bit of hope we could cling to, was that his vital functions remained stable and he was able to regulate his breathing on his own. After 10 days of antibiotics and all that time in a coma, my dad was no longer able to breathe unaided. His vital functions were dysregulated. The doctor suspected that he had become brain dead. However, this could only be officially confirmed after the weekend.

This was quite unexpected for us, because his CRP levels had been constantly decreasing and his condition had remained stable throughout the week. We thought the antibiotics were effective. We only did not know to what extent the infection in his brain stem had caused brain damage. In complete disbelief, we decided to return to our accommodation and come back to the hospital the next morning, just holding up our last hope for a miracle. It soon turned out that his blood pressure and oxygen levels had dropped significantly, the doctor then confirmed once more to us that Raymond was dying. His vital functions were slowly fading away. On 11 August, in our presence, he passed away peacefully and with no pain.

Raymond’s loss came as a lightning strike out of the blue. Within 24 hours, our lives changed forever. The speed at which his condition deteriorated was incomprehensible. Only a short time before, we laughed together, made plans and enjoyed life.

By sharing his story, we hope to increase awareness about meningitis. This disease is insidious and often difficult to recognise. The initial symptoms resemble an innocent flu, but within hours the situation can become life-threatening. Every minute lost can mean the difference between life and death. That is why it is so important that both the public and healthcare professionals are alert to the signs of meningitis, and that more research is conducted into faster and better methods of diagnosis and treatment.

We went to the doctor. He thought I should take him to the hospital myself because Leon could still walk. That drive was a nightmare: Leon sitting next to me, confused. I couldn’t communicate with him, he didn’t want to wear his seatbelt, he was leaning on me while I had to drive, and our five-month-old son Sam was in his Maxi-Cosi in the back seat. I was completely on my own.

The first hospitalization
No one at the hospital had any idea what was going on. Leon was given prednisone, recovered a little, and was sent home after a few days – without a diagnosis. But the headaches came back in full force.

4 April 2004 – his birthday
Leon walked to the front door to welcome his brother. Nothing was wrong when he walked to the door, but in a split second it was: his brother saw it immediately: Leon’s mouth was hanging sideways. Back to the hospital, this time for a longer examination. They didn’t look for a disease but ruled things out. Everything was investigated, such as MS, AIDS, and brain tumour. They didn’t know.

Meanwhile, Leon was extremely confused. He tried to go to his sick mother, who was in the intensive care unit at the other hospital in Eindhoven. He bit through his IV tubes and fell out of bed. By then, he could no longer walk. The hospital asked me to sign a form to have him restrained for his own safety.

Our neurologist consulted a professor at the Amsterdam UMC. Leon was taken by ambulance to Amsterdam. After countless tests, the diagnosis came: isolated cerebral vasculitis, an inflammation of the blood vessels in the brain.

Just in time
Leon had to start a heavy course of chemotherapy and prednisone, which would last for 2.5 years. Fortunately, I realised in time that this treatment would make it impossible for us to have children in the natural way. That wasn’t a priority at that time, but it was important for our future. The treatment was postponed so that we could have his sperm frozen.

After months in hospital, first at the Amsterdam UMC and later closer to home in Eindhoven, Leon slowly recovered: walking with difficulty, talking with difficulty, but making progress. He continued his rehabilitation in Blixembosch and was eventually even able to return to work as a teacher. We pretended that life was back to normal, but the brain damage was greater than we realised at that time.

2009 – it returns
Five years later, again on his birthday, disaster struck once more. Leon’s mouth was hanging crookedly; he collapsed in front of our son. At the hospital, they initially wanted to send us back to the GP – protocol. I refused, demanding that they read his file. Then everything happened very quickly. It became clear that the disease had returned. More treatments. The damage that was already there in the brain had worsened, but even then, we didn’t see it or didn’t want to see it.

2014 – my breaking point
After years of worries, treatments, and setbacks, I was exhausted. I told the neurologist, ‘Here he is, it’s your turn, I’m done.’ He had known us for ten years and didn’t give up. We were sent to Blixembosch together, Leon for therapy, me for a support group. There I learned an important lesson. Leon had already been told that he had to rest every afternoon. He didn’t know why. We thought that was nonsense – he wasn’t even fifty yet!
In the support group, another partner said that her husband went to sleep every afternoon and that since then they had had no more unpleasant discussions, fewer arguments, and less misunderstandings. It improved their lives. The psychiatrist explained that people with an acquired brain disorder wake up in the morning with less energy and that this energy is recharged by resting in the afternoon. Since then, Leon has been sleeping for an hour and a half every afternoon. It really makes a difference.

His work – a blow
He could no longer work. The stimuli, the pace – it wasn’t working. His employer had him sign his resignation, but Leon had misunderstood it. He thought he was getting a “daddy day”. I only discovered the truth later, but it was too late to undo it. A years-long battle with the UWV began. His illness was unknown there. He was misjudged time after time. Eventually, after procedures and emotional conversations, he was declared completely unable to work. It felt twofold: relief and loss. So young and already ruled out – it took us a long time to accept that.

Now – so many years later
Today, Leon is slowly getting worse, even though he denies it. I can see it. To take the pressure off him, in addition to my demanding 40-hour job, I also take care of our son, the household and the shopping. On days when he has no daytime activities, he can walk the dog and empty the dishwasher. On other days, I do everything myself.

A lot has happened over the years related to my husband’s brain disorder. Our life is and will never be the same again.

I could write a very thick book about rehabilitation. I lost my way everywhere, I had to relearn my way in my house, immediate surroundings, and village. I was totally disoriented. I couldn’t memorise the spaces I was in. In different light, a room could already look unrecognisable to me. Every time, I thought I was sleeping in a different room. Sounds seemed to come in loud; I avoided crowded places and loud noise as much as possible. My level of energy was incredibly low, a completely different tiredness than usual. I couldn’t oversee a simple daily routine; I really needed help with that. I was ashamed of the things I couldn’t do. It made me very insecure, and I was terribly depressed.

At that time, I found it very difficult that people had no idea what I was going through and didn’t understand me. The invisible is so incredibly difficult. I couldn’t even put into words how I felt and what I needed. I felt lonely and misunderstood. It would have helped me a lot if I knew then that I was not the only one experiencing this and that it could turn out okay. That is why I am so happy with the initiative of Jur Deitmers and his parents. The ItsME Foundation offers what so many people need.

Altogether, the recovery process took about two years. The entire process felt like top-level sport. You have the feeling that you go three steps forward and two back again. It was a matter of balancing between two extremes: between accepting and fighting, between patience and impatience, between rest and action, between resignation and anger, between doing it yourself and asking for help. It is all necessary and it is almost impossible to balance. You make mistakes and that too you must accept.

After 1½ years, I restarted with active sports. First, running at the local running club. That went very well. Slowly building up my physical condition. I also started playing volleyball again. That caused problems at first, because of the noise in the sports hall and because I didn’t know my position in the field due to disorientation. Later, things improved. Now I am rowing already for nine years, and I have participated a few times in the sprint triathlon in our village. Playing sports helped me feel confident again. It is and will always be a miracle that I am able to do all this again. I am very aware of the importance of good physical condition.

I was thirty-one when I was diagnosed with encephalitis. At that age, adjoining parts of the brain can take over functions quite easily. I have learned to do some things differently or to use a different strategy that makes them work. I have lost a part of my visual memory when it comes to recognising spaces and routes. But that is recoverable and with a bit of creativity I can find my way.

It has been 16 years now. I have been with Ralf for 24 years and the proud mother of Sanne (18) and Bram (15). At this time, we can hardly imagine that the story above is about me. Against all odds, I have fully recovered and become my old self again. I have been very lucky, but I also had to work hard on my recovery. It did not go smoothly.

Once I was fully recovered, I was eager to help others to find their way out in this struggle. With the help of a friend, I created my own website: www.watoverkomtmijnou.nl. On this site, you can also order my book “Wat overkomt mij nou” [What is happening to me now]. In this book, I talk about my frustrations and experiences. It can be downloaded as an e-book, for e-reader, phone, or laptop. Per book ordered, a donation will be made to the ItsME Foundation.

Never ever give up!

At work – I was a member of the animation team at a holiday park – things also got worse. In training sessions, I could still hold myself, but social contact? That was no longer possible. I did not understand conversations, lost my friends. They found my behaviour strange. And frankly, so did I.

Things weren’t any better at home. Everything felt confusing. Not because I had a headache, but because I no longer “understood” the world around me. As if my brain was no longer cooperating. I found that frightening. I couldn’t explain it either. What do you say when you’re not sure what is happening to you? I just wanted to sleep. Rest.

We went to the GP again. Could it be something physical? Before, I had had pneumonia. Was there a connection? In February 2024, I came for treatment at the paediatrician. He too couldn’t explain well what was happening to me. It was suggested to do an MRI of my head to see if there might be a tumour. This made me panic and I put it off at first, also because I seemed to be doing better for a short period. But from May it got a little worse day by day. Until, in August, it became no longer doable at all. My talking was almost impossible to understand, only my mother could still make something out of it. The complete logic in life had disappeared for me. I was crying all day and functioning at toddler level. My mother just couldn’t believe that this was caused by stress. So, after the summer holidays, she called the GP and paediatrician again. After her story, immediate action was taken. That’s when the MRI, which I didn’t want before, was made. The results were good fortunately, except that a small scar was visible in the white matter, but that was nothing alarming.

Because I could snore tremendously loud at night and was very restless with my arms and legs, epilepsy or sleep apnoea was thought to be a possibility. Therefore, I first had a short sleep EEG in the hospital. On that, it was clear that all sorts of things were happening, but that in fact did not fit with epilepsy. To be sure anyway, I was referred to the epilepsy centre in Zwolle. A 24-hour EEG was made. The very next day, my mother was called to say that it was not epilepsy, but that what was going on in my head was definitely worrying. Meanwhile, I was getting worse and worse, every stimulus was overwhelming and too much. After some more neurological tests, it was finally decided in November to examine what was going on more thoroughly. By then, it looked like I had a mental disability and was functioning at a low level. Under a light anaesthetic, a lot of blood and cerebrospinal fluid was extracted. This was sent to all types of specialised hospitals, with Erasmus UMC in the lead. The research was labelled as urgent at each hospital. After a week, 14 November 2024, finally the clarifying, but also intense, phone call to my mother came. It was very serious, Anti NMDA Encephalitis.

The day after the diagnosis – 15 November 2024 – I was already in the hospital for my first therapy with medication. First, a 5-day course of prednisone. I slowly recovered from that. At the end of the first day, there was already some improvement: I could make short intelligible sentences again. But because after five days the hospital still thought it was fluctuating too much, I was also given 5 days of immunotherapy. The last one worked well. Really well. After just a few days, I noticed a difference. I thought everyone was acting so childish towards me. What I didn’t know was that they did that because, when I entered the hospital, I was functioning at a childish level Slowly I came back to myself. Receiving visitors became nice again. I could follow conversations. I joined games. I was living a bit again.

In total, I had three hospital stays for the treatments. After the second course of only 3 days, with both drugs, the bad cells were out of my body. The third was an extra boost, just to be on the safe side. And on 17 January 2025, I could finally say, ‘my last therapy is over’. Dancing and with an honour guard of doctors, nurses and educators, I walked off the ward area.

I will remain under observation for the next few years, with an MRI scan of my abdomen and occasional day-case visits. The MRI is because the antibodies that caused this, fit with a tumour in the fallopian tubes or ovaries. So far, fortunately, this has not been seen.

I am also taking part in a study at Erasmus UMC because it is a rare form of brain inflammation. We absolutely for sure want to cooperate to discover more about this.

Now, months later, I am still recovering, but I feel good, and I hope the positive trend continues. My friends are back in my life. I am working at the holiday park again. My speech is normal. Only sometimes I get tired more quickly – especially after a busy morning at work. Then I go to rest, take my sleep. I always liked that. Some things don’t change (ha-ha). I do have a slightly short-tempered behaviour, can get angry easily and find it hard to put my brakes on.

I temporarily abandoned my study Helping Care and Welfare. My mum deregistered me when it became clear what was wrong with me. I want to start again after the summer. Although that feels double-sided – my friends have already finished the study. But I want to get my diploma. For myself.

I am only eighteen; I have so much ahead of me. And after everything I have been through, I know one thing for sure: I just want to be myself. To live my own life.

Ingeborg tells what happened

During a short holiday to Norway with her then boyfriend Mathijs, Luka suddenly felt seriously ill during the night of New Year’s Eve. On New Year’s Eve, she was already not feeling well. She phoned me that she had diarrhea and was feeling nauseous, and later some allergic skin rashes. Just to be sure, I did some googling, but found nothing that seemed immediately alarming. Around midnight, things actually improved slightly. During a video call, we wished each other a Happy New Year and they showed us the fireworks above the Oslo fjord.

But shortly afterwards, her condition deteriorated unexpectedly fast and she asked for medical help. And when Luka asked for this, you knew things really weren’t going well. The first time, they would not send an  ambulance. Her condition deteriorated quickly: she became confused and was barely approachable. Mathijs immediately called the second time for medical help, and Luka was rushed to the hospital.

Meanwhile, he tried to reach us with messages and phone calls. Unfortunately, we missed all of those. It wasn’t until 7am that I heard the phone rang. That’s when our nightmare began. What started as mild symptoms, rapidly turned into a life-threatening situation. I was given a doctor on the phone. The doctors thought it was meningitis. My first reaction was that it couldn’t be that because she had been vaccinated against meningitis. And yet they thought of this.

It later turned out that Luka had meningitis due to meningococcal B bacteria. What many people don’t know – and what we didn’t know then either – is that this variant is not included in the Dutch National Vaccination Program. The standard vaccination only protects against types A, C, W and Y. Luka had been vaccinated against these types.

If only I had known, I would definitely have had Luka vaccinated against meningococcus B as well. But we were not given that choice. The vaccine is only available at your own initiative and expense, and is not actively offered or mentioned. By sharing this information now, I hope to give other parents that choice. Because being aware is being able to choose – and sometimes that choice makes the difference of a life.

We were told to come to Norway immediately because Luka was in a very critical condition. At first you sit staring at the phone in disbelief and then we started arranging everything like a madman. Calling travel insurance, packing suitcases, informing family. 1 January 1pm we were on the plane to Norway.

In the meantime, Luka had been transported by a helicopter to a specialised hospital in Oslo for surgery.

When we arrived at the hospital, the first thing we were given was antibiotics and then we were allowed to join Luka. It seemed as if she was sleeping, so I whispered in her ear, ‘mum and dad are here, just wake up, we can go home soon.’ But she was being kept in an artificial coma and we could not make contact with her. It was very obvious that Luka was very sick.

During the first conversation with the head of intensive care, we were already told that she was very seriously ill and that there was very little hope. Even if she would make it, she would never be the same again because of the irreparable brain damage. I remember saying, ‘I don’t care if she is disabled, we will find a way for that, just get her out of here!”

For the first three days, we were only allowed near Luka wearing protective clothing. Nobody yet knew what bacteria it was, and the risks were high. When it became clear that it was meningococcal B, we were immediately vaccinated ourselves. After that, we were finally allowed to be with her without protection. I will forget that moment

I will never forget that moment. Being able to touch your daughter again. Kissing her forehead. Holding her hand – without protective clothing.

On Thursday 5 January, Luka’s condition suddenly worsened, despite intensive treatments. We had just rebooked the hotel rooms when we got a call: Luka was deteriorating. We immediately ran to the hospital. When we arrived, the situation all of sudden seemed to stabilise again. I still don’t understand what happened next. Her brain pressure dropped to a value we had hoped for all those days. We were so relieved and dared to have a little hope that she would make it after all. We held her hand, talked to Luka, stroked her hair and kissed her and I whispered, ‘Hang in there, love.”

The brain pressure remained stable. After a few hours, I walked away for a while to share this good news with a friend. But when I returned, things went completely wrong: her blood pressure dropped, her heart rate dropped and her brain pressure skyrocketed to the 100 s mark, a level the brain cannot tolerate.

After five long and very hard days, we were told that Luka, our daughter, was brain dead. In total disbelief, we had to say goodbye to our daughter and Mathijs to his girlfriend. On 5 January 2023, at 7.29pm, Luka passed away.

The moment you have to say good-bye to your 21-year-old daughter – full of zest for life, dreams and ambitions – is an image that never leaves you. Bert, Mathijs and I – hold each other tightly. We tell her how endlessly we love her.

The next day we got to say goodbye for one more time. In the hospital chapel, Luka was lying in a state of rest, with a beautiful smile on her face. It was as if she wanted to say, ‘Dad, mum, it’s okay.’

Back in the Netherlands, the rest of our lives was about to begin, a life after Luka. Her funeral was visited by nearly three hundred people. The hearse was an old Volkswagen bus. With such a bus, she wanted to go on a tour through the US one day. The support of friends, family, nearest neighbours, colleagues, fellow students and classmates of Luka helped us through that first period and still do.

Despite the immense grief, Luka’s death has also given us beautiful things. We have made new friends and other friendships have become stronger. It has also brought us closer together as her parents and our relationship – unlike what often happens after the death of a child – has become more intense. Together, we continue to cherish Luka’s warm personality, her humour, her strength and lust for life.

However, I still was struggling with guilt. ‘Why did no alarm bells have been triggered to me when she called me?” At the moment she needed us most, we were not able to do anything for her. I blamed myself very much for that, especially in the beginning. But her doctor assured me that no one could have changed the outcome. The only thing that could have saved her were antibiotics given before she developed symptoms. Or a vaccine, but she turned out not to have been vaccinated against this variant. If only I had known this, we would have had her vaccinated against type B, of course.

Meanwhile, we have experienced all the first times without Luka. Her birthday on 22 November, her death anniversary, the national holidays, vacations… All without her.

We still get sweet messages from people who knew her. Stories, photos, memories – they are all gifts. They give us new pieces of Luka in our minds, for which we are incredibly grateful.

It doesn’t get any easier. But the warm safety net around us, and those precious memories, keep us going. The grief is slowly softening. But the loss… that is growing.

Especially her fun eyes and her joyful laughter – I would SO love to see and hear those one more time.

I find giving presentations, together with the It’s ME Foundation or the Dutch Meningitis Foundation, incredibly important. Because, if by sharing my story I can spare even one parent this immense grief, then it’s worth it.

Luka’s death is beyond comprehension and senseless, but please don’t let it be useless. If her loss can help alert others, save lives – then that’s the legacy we can give her.

On measuring the body temperature, I did not know what I saw: 40 degrees, high fever. From the GP, we went straight to the emergency room. At the ER, we were waited for since our GP had informed them. We felt like we had entered a movie, so unreal. We heard that a team of specialists from Rocourt Children’s Hospital was on its way. Then we started to realise, this is really serious.

The Rocourt team decided to transfer Nick to the children’s hospital. We followed in our own car. The diagnosis was meningitis, and the paediatrician told us he would be severely disabled. Who cared. So many years we had been looking forward to him. We wanted him to stay alive. But there came additional complications of convulsions and an oedema. The ground slipped under our feet, our world stopped. This little boy was so welcome, but on 22 December at 14h10, our Nick died in our arms. The grief … there are no words for that.

I got pregnant again. On 16 December 1994, I gave birth to our second son Brecht. The first year of his life was not easy for us. We were constantly worrying. But then gradually fear made way for happiness. Until 10 April 2000 at 10h20.

I got a call from Brecht’s school teacher. Brecht had a headache, not from a fall or something like that. Coming home with Brecht, I immediately did neck and leg exercises with him. It was not well. Again, the GP directed us to the emergency room. On entering there, Brecht vomited. Another alarm bell.

Yet after several tests, the paediatrician concluded that nothing was wrong, and they wanted us to go home. But my motherly feelings protested and I claimed there had to be more going on. After many doubts, the paediatrician decided to keep him in observation for 24 hours to satisfy us.

In the late afternoon, a lumbar puncture was done at the urging of us, the parents. Three paediatricians thought it was too painful, but we insisted. Brecht’s screams went through our hearts. We wondered if we were making the right decision as a parent or whether we were acting out of fear more.

The results came and believe it or not: meningitis. The doctors assured us to do everything possible to help him recover. Fortunately, it was successful. Brecht recovered completely, with no side effect. As you could imagine, if we had lost Brecht, I would not have been able to write this story.

The next day, the paediatrician apologised. Because, if we had gone home ….. I really should not think about it. Fortunately, fortunately, the mum’s feelings spoke to me. And now, so many years later, even though Brecht never knew Nick, Nick lives with us and is being spoken of.

Brecht is committed in supporting the ItsME foundation in the fight against meningitis and encefalitis. By his participation in the Leuven marathon and the Run With ME, he honours his brother and is committed in raising awareness for meningitis. And to raise money for research and for the support of others. As a mum, I am tremendously proud of him.

On Sunday evening, 6 August, I spoke to Annelotte. She was starting to lose her courage and was annoyed at still being sick. Yet she did not want me to pick her up and take her home to Zwolle. She wanted us to just go on holiday on Monday, as planned.

On Monday afternoon, she was able to visit the GP surgery. Although not to the GP, but to the assistant. Thankfully, she would be examined. Actually, I assumed the assistant would manage to get her a medicine. She called again immediately in the afternoon. The doctor’s assistant’s conclusion was frontal sinusitis. She just had to take paracetamol and ibuprofen.

Annelotte then felt too sick to take care of herself. Our offer to pick her up, she resolutely declined, nonetheless. “Yes, ok it’s annoying, but nothing serious. Now enjoy your holidays!”  Since we were on holiday in South Limburg, Annelotte went to her aunt Claudia on Monday evening. She picked her up. I heard from my sister that she was indeed quite sick, but she had already eaten something again and that held. On Tuesday, Annelotte felt a lot better and went for a walk outside in the sun with her aunt in the afternoon. She even wanted to walk a block further. She cheerfully messaged me that she had had the worst of it and that she would stay at her aunt’s for a while and have herself pampered.

The next day, she complained that the bad headache had returned and was very painful. She also threw up again. Every time I said something to her, I seemed to wake her up. We agreed that she went to sleep for a while. I called her that same afternoon many times in vain. Since she didn’t answer, I thought she was, finally, asleep.

That Wednesday afternoon, around 4 o’clock, she threw up again. At 4.30, my sister came home from work and could no longer get in touch with Annelotte. Annelotte was only moaning. She didn’t trust it and called us saying ‘please come right away’.

We immediately jumped in the car; it became our longest two-and-a-half hours in the car from South Limburg to Haarlem. Annelotte was taken to the hospital in Haarlem with blowing sirens. It was decided to transfer her to a more specialised hospital. They waited for us in Haarlem for a while. We were able to give Annelotte a quick kiss and away she was. In the ambulance, with a doctor present because of the critical situation, to the Amsterdam VUMC. We followed. And then your child is lying there in the ICU. Very pale and with all kinds of bells and whistles. I was very afraid of losing her. Around 11 pm, we were initially sent home. After much pleading, we were allowed to sleep in a family room. Close to Annelotte.

By midnight, we wished Annelotte goodnight and went to bed. At 01.30 am we woke up from a knock on the door. A nurse was standing there. I thought Annelotte was waking up, but unfortunately it was bad news. Annelotte was getting too much pressure on her head on the right and needed urgent surgery to give the brain more space. A piece would be taken out of her skull to reduce the pressure on her brain. We only just had a moment to give her a kiss and there she went, into the operating room. Again, I got the unpleasant feeling that this was the beginning of the end.

Finally, by a quarter to six we got a call: the immediate danger had passed, the operation had gone well. The neurologist had operated on her first. The ENT doctor was the second to operate on her. The ENT doctor had rarely seen such a severe inflammation. We were allowed to see Annelotte. She lay there with all sorts of devices on either side of her bed, a bright pink stripe of disinfectant on her forehead and a towel draped as hair.

The situation was now stable, and it was waiting to see how things would proceed. Unfortunately, the pressure on the left side became too high and a second operation was needed. Again, panic and fear and again that terrible feeling that Annelotte was not going to make it. Now a piece was removed from her skull on the left side. Fortunately, this second operation also went well and took less time.

I found it frightening to see how badly her head was swollen. I hardly recognised my own child. Fortunately, the swelling did go away quickly.

That night I woke up around 2.30am and felt the urge to go to Annelotte. I was then alone with her for the first time. I encouraged her to fight with everything she had in her. That we were ready to help and encourage her. But I also told her that when she could do no more, I was ready to let go of her purely out of love and that it was okay then too, as horrible as it was.

Two and a half relatively quiet days followed. The pressure in her brain regularly increased again. At that point the sedation was increased, which reduced the pressure a little again. The scans to see what that pressure was doing to her brain showed some brain damage.

Immediately on arrival at the hospital, we had been told that Annelotte was never going to leave the hospital as the same Annelotte, but that she was still young, and young people could recover exceptionally well. According to them, her age worked in her advantage.

On Sunday afternoon, 13 August, it was first mentioned that we also had to start dealing with the fact that things could go wrong. The doctors were standing with their backs to the wall and didn’t really know either. I then predicted that she would die on Tuesday.

After two nights, we slept in the guesthouse of the Amsterdam VUMC. Fortunately, close to Annelotte.

On Monday, Annelotte slowly got worse throughout the day. The pressure in her head increased more and more and we were also told that there was more brain damage.  When we called the ICU in the evening, before going to bed, we were told that her response to a pain stimulus was considerably decreased. Unlike before, she no longer lifted her hand.

On Tuesday morning, I was awake by 5.15 am. I couldn’t wait any longer and called the ICU. I got bad news again. Annelotte’s condition had worsened again, and a neurologist had visited her overnight for the first time. The fact that we were allowed to come right away too, and not after 8 o’clock, was saying a lot to me.

Around 2.30am, we had a meeting with the team caring for and supervising Annelotte. You then see the doctors walking down the corridor. You can tell immediately from their facial expressions that they were not coming to bring good news. The conversation was short and intense. The first thing they said was that Annelotte had such brain damage that she would not even make it as a plant. The second was the question of whether she was in favour of organ donation. It’s like being part of a bad movie.

I went into the regulation mode after this conversation. Family was called, friends were texted and the farewell photographer arranged. When everyone had said their goodbyes, the six dearest people in Annelotte’s life stayed. Her brother and sister-in-law, 2 girlfriends, her bonus father and me, her mother. We were holding her and her hands, putting on her playlist and sometimes softly singing. Slowly but surely, there were larger and larger intervals between her breaths. Finally at 9.12pm, six days after her hospitalisation, Annelotte breathed her final breath.

‘A star that shines twice as bright, dies twice as fast’

Not much later one night, my mother and my brother contacted my daughter because I sent them a WhatsApp that night, telling them I was dead. I had delusions that I just died. My daughter helped me a lot that night by trying to get me into the here and now. In complete rest. Besides the delusions, I was getting epileptic shocks and still my GP diagnosed it as ‘psychological’ and, because of the delusions, referred me to a psychiatric institution for an interview. Back then, I was still reasonably comprehensible.

One other night mid June 2023, things escalated completely. From then on, I was unaware of what was happening. A nurse came and gave me more and more lorazepam to calm me down. It didn’t work. My motor functions failed, and I could no longer make myself understood.  At the urging of my brother and mother that night, the psychiatric nurse was summoned to consult a senior. That is why the psychiatrist, who I consulted before, came. She immediately saw that the cause was not psychological but neurological and that I had deteriorated seriously, compared to earlier. If this psychiatrist had not come, I would have been sedated further by the psychiatric nurse and transferred to the clinic, with all the consequences.

Instead, I was quickly taken to the emergency room of the hospital. At first, they were unable to make an MRI. I was extremely agitated and even with all the medication and high doses of ketamine, they couldn’t manage to calm me down. I also remained wild during and after being fixated. In the end, they had to put me to sleep and intubate me in the ICU, to make the MRI. The results were clear: encephalitis.

The prognosis was bad: I would have to be kept asleep for weeks. It had been even thought that I would not make it. But after just one week in the hospital, including three days in the ICU with prednisone and immunoglobin as medication, I was able to go home. I am convinced that if I had ended up in psychiatry, things would have ended up in a bad way for me.

The physical symptoms I had are gone. I no longer need my brace. I do, however, still fear that the disease will return. The doctors cannot guarantee against that. But they don’t consider the chances as big. About two to three months ago, I had severe headaches while reading. Apparently, I was exceeding my limits at that time. Now in total eight months later, I am slowly restarting my work. Work is really important to me, and I always had my phone switched on. Now I am going to keep work and personal separate more, for a better balance.

I experienced the past year as very intense. Not at the least because the GP did not recognise the signs and sent me away. In the hospital, I was taken care of very well. I felt very much seen by the doctors there. When I had a bad headache, a new MRI was made quickly. The doctors and nurses said it had been intense and rare for them too.

Besides the doctors, my family helped me tremendously with my recovery. Fortunately, my children were able to talk to others, at school and at the practice nurse too, about what was happening with me and about their panic. Their fear of losing me is still around. Quite understandably, this makes them (more) alert. My illness and the road to recovery made my family and relatives even more close.

I don’t want to live in the downside, but I do want to make the most of life. I live more consciously. The past year also taught me to put myself first more often. But above all, I feel very rich. There is all love and that is mutual. I am grateful that I am still here. I feel good and do realise that I have been incredibly lucky. However, I do want to mention that GPs in particular need to be more alert and that when there are psychological signs, they should not just look for a psychological explanation.

* Fictitious name. Name known by ItsME Foundation.

My body was wiped out. Because of the virus and because of the medication. I really couldn’t do anything for a while. Instead of a few weeks, as I first thought, it took months before I was slightly my old self again. I had to interrupt my work as mayor of Hilversum temporarily. Very sadly.

In the 1st or 2nd week after I was “awake” again, I wanted to use my iPhone. I really didn’t remember how. Unbelievable that this virus can cause you to forget which buttons to press. Something you were used to do for 20 years. I still notice that my brain is sometimes confused. It’s those little inconveniences, like putting the wrong fuel in your car. Losing control over your own life is a confrontation with yourself. The disease is an uninvited guest that never leaves.

Rehabilitation was mostly a lot of self-work and dealing with uncertainties. I started working out twice a week. In total I lost 15 kg, which is not bad. A lot of things I had to do differently. Besides the fact that the virus took control over my life for a while, which I am slowly regaining, I had to change certain deeply ingrained “bad” habits. I used to think it was cool that I slept short (four – five hours a night). Since my time at college, I get up very early, around 5 or 6 am. At my age (71) that appears to be very bad. I must learn to sleep longer. I find that very difficult. Asking for help earlier is also a lesson I have learned. Anything to regain a strong body and a vital mind.

Pretty soon after being discharged from the hospital, I wanted to return to work. My rehab doctor convinced me to postpone this to avoid overstressing and getting worse, rather than recovering. I learned to recognize the importance of finding a new balance.

In my case, my illness was not the result of working too hard, but bad luck, according to my doctor. I did realize that I had not enjoyed enough in the last year before my illness. I was so busy with the Safety Council for meetings on corona measures. I just kept going. The four months I spent at home and even now, I stop more often to look around myself and enjoy the moment. The profession of a mayor is a wonderful job. It has served me well: something to enjoy. Five months after my illness, I resumed my work as mayor. Meanwhile, I have resigned because I have reached the age at which a mayor should retire, 70. After my illness, I was able to practice this beautiful profession for another six months and say goodbye to residents and public servants. That felt like a triumph.

During the start of my recovery, I struggled to accept that I had to give up control. I was often sombre at that time. I felt that the virus turned my life upside down. My GP indicated that you could speak of a traumatic experience. But he also indicated that if you look forward, the world looks ok again. Because it is temporary, it is conquerable.

The kind words from both familiar and unfamiliar residents of Hilversum were heartwarming. Uncountable sweet words, letters and cards, boxes full. And not only that. They gave me back my self-confidence, which had been firmly hit by the virus. Friends and acquaintances say I have changed. More fragile, less confident. My disease was a radical intervention to come to my senses. According to my GP, I have been lucky.

The virus turned my life upside down. Slowly I am regaining control. I consider myself lucky to succeeded to overcome the disease. And nevertheless, the old Pieter will not return.

One thing they were pretty soon sure of, it was not corona. From those first days in hospital, I don’t remember anything. After several tests, it became clear that I had an inflammation in my brain caused by a virus: I had herpes encephalitis. A rare infection that can leave you with permanent brain damage and can be fatal.

My life was turned upside down: from never being sick to deathly ill. When I recovered, I didn’t know anything at all. I didn’t even know who my girlfriend and children were. Fortunately, after a few days, memories started to come back and things slowly started to improve. In total, I spent about 2 weeks in hospital. After that, I was transferred to a rehabilitation centre. There, I went outside to walk again and cycle again (wearing a helmet to be sure). After a total of 6 weeks, I returned home. I thought: I survived. But I wasn’t there yet: things turned out differently.

A few weeks later, I started acting strange: talking weird and sending weird WhatsApp’s to friends, over a hundred in one evening. Those around me started to get worried. I didn’t realise it myself: very strange, you’re there, but you’re not. I developed mental disorders: I became crazier and crazier. My brain was, figuratively speaking, on fire. One morning I woke up in a psychiatric centre. They didn’t know what was going on. Only when the Erasmus Hospital after several weeks presented the results of the epidural. it became clear that I had Anti-NMDA receptor encephalitis. It was a reaction to the earlier virus: my own brain was in fact attacked by antibodies from my own body. Relatively little is known about this disease.

I can say that I am now back in control of my life. But different than before 12 September 2020, the day everything changed. To this day, I sometimes cannot find words. The aftereffects of my disease make it impossible for me to work as a show manager. Being a show manager was an important part of my life. My mission was to create an experience and make a huge impact with a show or event. For me, the positivity the event industry brought me has had a beneficial effect on my recovery, I am convinced.

Making an impact is what I still want to do. Although in a different way. Besides my work as a creative director, I give various presentations. Not only about working as a showmanager and the world behind the scenes of the events industry, but also about my battle against my disease. With my presentation ‘Losing control’, I want to show people that you can turn a difficult road into a beautiful footpath, with the help of others. Resilience and persistence are very important in this. Losing control is recognisable for many people: you all lose control sometimes to some extent. How nice is it that I can inspire people by combining my own story with my experience in how to keep an audience on the edge of their seats? It gives me a lot of satisfaction, perhaps even more than the finest dinner shows I have directed.

I see a bright future ahead in which I can inspire others with my experiences and my creative knowledge.

People noticed that I was trembling, unsteady on my feet and talking differently, slower and with a different intonation. I really couldn’t do my weekly Sudoku puzzle from the newspaper anymore. How had I always done that? With yoga, I could no longer stand on one leg. I had all these ‘strange’ complaints. Via a referral from the GP, I went to the neurologist, who ordered an MRI scan. On 22 July 2022, I still waited for the results, totally unaware of what was wrong with me.

Because I was not alone when I passed out on the street and because of my medical history, I ended up in the hospital and on the ward of the same neurologist. Nevertheless, they had a lot of trouble diagnosing my illness. They kept me in a coma until that Monday. It was very nerve-wracking how I would wake up again. My son was warned that it might not end well, and I might die. But fortunately, I woke up again. At first, I was very confused. I felt like I was on a bus that kept going left and right. Probably because of the beeps from the devices at my bedside and the medications. I recovered quickly and could leave the ICU after a few days. In the two weeks I spent in the hospital, I made fast progress. I recovered so well that, contrary to the original plan, I did not even have to go to the rehabilitation clinic first. I was able to go home straight away. With neurological physiotherapy and support from the rehabilitation doctor, I became more and more my old self again.

I was diagnosed based on my illness profile, my reaction to the medicines and eliminating options. I had no known antibodies, no bacterial or viral infection, and no tumours or cysts. With that, the conclusion was an autoimmune encephalitis, with a high chance that it will not re-occur.

I see my illness and my coma as a big reset of my life. When I opened my eyes again, I was immediately happy that I was still alive, that I ‘m good the way I am and that I deserve to be here. ‘Anouk 2.0’ was immediately my goal.

Over time, I experienced I was getting better and better. Since mid-September 2023, I have been officially reported fully recovered for work again. The rehabilitation period has given me time to deal with my illness and my divorce. And to look forward again. In the summer of 2023, I went to Austria by car with my son to spend a holiday together. I have a new relationship and I really enjoy playing music in the local brass band, a hobby I really picked up after my illness. ‘Anouk 2.0’ is pretty much there and I’m proud of it!

Initially, after a few months, I thought the worst was over. Now, more than three years later, this seems to be the case – although not 100% sure.

It wasn’t just the windscreen wiper that gave me headaches, the TV remote control was also a mystery. Of many apps on my iPhone, I no longer had any idea what it was for. iDeal? What’s that? Contactless payment? How? I also had physical discomforts: constantly experiencing jerks or small contractions in arms and legs, often a twitching eyelid. Not painful or obstructive but irritating. The medical term is fasciculations. Also noted: strange and unpleasant smell and taste sensations, fatigue and very occasionally speech problems.

The symptoms, especially the psychological ones, got worse. I had the anxious feeling that I was suffering from dementia. So, one afternoon I called my wife with the foolish question where I was and what on earth I was doing there. I was walking in the centre of my hometown and had literally lost my way. Often, I couldn’t remember who I had been talking to the day before. The first months of 2020, at the peak of my AILE, were shrouded in a thick haze. Of a family reunion, I remember nothing. Nor of an interview I conducted in February that year. On the other hand, I had little trouble with well-established activities like editing the magazine of which I was editor-in-chief. The rather complex editorial system, which allowed me to work from home, caused no problems.

As the neurological examination revealed nothing, but the focal seizures were increasing in frequency, my neurologist referred me to epilepsy centre Sein. It was Dr Esther Poortvliet-Koedam of Sein who suspected that I had autoimmune limbic encephalitis. A lumbar puncture (cerebrospinal fluid) confirmed this. Before I knew it, I was in the Tergooi hospital on an infusion of prednisone (1,000 mg) and immunoglobulin.

Looking back, I had previous symptoms such as fatigue and neuropathy. Overall malaise, possibly due to overwork and already diagnosed heart problems. But our alert GP also had me examined by specialists other than the cardiologist. The first appointment with a neurologist was in October 2019. From then on, I ended up in a carousel of neurological examinations. With neurologist Dr Juna de Vries at MC Erasmus, I only recently discussed the possibility that my encephalitis may have had an unusually long lead time. AILE usually occurs quite suddenly.

My Tergooi neurologist apologised for not immediately realising what was wrong with me: “In the 30 years I have been doing this work, this is only the second time I have encountered someone with autoimmune encephalitis”. Patients are often over-60s, although there are also younger patients. Other AILE variants occur in a more diverse group, including in quite a few young women. Including New York journalist Susannah Cahalan. She wrote the (filmed) book Brain on Fire. Highly recommended for those who cannot imagine having encephalitis.

Encephalitis ‘does something to you’, stating the obvious. The symptoms are partly psychiatric, complete with temporary behavioural changes – sometimes to the bewilderment or incomprehension of those around you. Unlike dementia, the encephalitis proved reversible, although my formerly excellent memory took a slight hit. The confusing thing about encephalitis is that you forget things, but most of it you don’t. You function to a great extent as if nothing is wrong. Appearances are deceiving.  This requires some generosity, solidarity and empathy from others. This is not always a given.

Much further down the track, I realise how important it is for your rehabilitation not to lose track or pick up where I left off as soon as possible. My work, after more than 13 years, was so embedded in my system that it provided an anchor. AILE, combined with corona time, caused the premature end of my journalistic career. Less than three years before my age of retirement. Fortunately, since the end of 2022, I do have a new challenge, as a municipal councillor. The brain cells have to keep on working.

Meanwhile, the disease returned twice. Especially the first time in 2021, shortly after the termination of my employment contract, was drastic and terrifying. A short beach walk on a stormy Zandvoort announced another Caspr attack. On the way back, my walking completely stopped. I stood as if nailed to the ground. I seemed to have lost any strength from my legs, as if paralysed. Panic struck. I still often think about that moment and the times I literally lost my way. Encephalitis will not leave you untouched.

Again, severe treatment in the form of prednisone and immunoglobulin. When the antibodies reappeared a year later, but this time somewhat less violently, it was decided to treat me with rituximab, plus immunoglobulin. Rituximab suppresses the immune system. It is now a maintenance treatment. The symptoms are slowly but surely decreasing, with now serious hope of recovery. So, the rituximab treatments are working well. Instead of every three months, I only have a blood test every six months. This so-called ‘titer determination’ reveals how the antibodies are behaving. My neurologist gives me good hope, but also admits that there is no clarity about the further course yet.

Much is still uncertain about this only recently discovered condition. More research, more hope.

My life changed completely. Instead of moving into a student home (I already had a dorm room) and starting my further education, I went to speech therapy. For a short time, I suffered from aphasia.

Of that total period in the hospital, I don’t remember anything. Recently I requested my file to learn more about this period and about my illness. Can you imagine that only after 30 years I did know what disease I had then?

Thirty years later, in late 2015, I developed vague symptoms: flu-like, tired, and forgetful. I saw colours differently. I couldn’t find words. Not being able finding words made me insecure: afraid that if someone asked me something, I wouldn’t know the answer. My GP tried to reassure me with “we get older and forget sometimes things.” But it got worse and worse. Even so bad that at one point I was convinced I wouldn’t make it to the next day. At the hospital they made me do memory tests that I really didn’t understand. Despite all my complaints, they wanted to send me home. My father, with me at that time, fortunately managed to prevent that. Finally, the neurologist came, and I was admitted to the hospital, the Martini Hospital in Groningen. After many different tests, a lumbar puncture revealed that I had anti nmda-r encephalitis. A disease with which my neurologist was acquainted with, fortunately.

Treatment was started with immunoglobin, which sadly did not work. Treatment with chemo (cyclophosphamide) and prednisolone did work. During that period, I felt mentally bad, I was suspicious, unrestrained, and found it hard that I was puffy and fat because of the treatment. Physically, I did improve. I walked a lot.

Six weeks later, my rehabilitation started at Beatrixoord in Haren. My only goal was to go home. After six intensive weeks of therapy, including physical therapy, sports, ergotherapy, exercise and cognitive rehabilitation, it was time: I was allowed to go home. I had to go back for rehabilitation twice a week for a month. And for three years, I was still under monitoring and took preventive medication.

A week after my last day of rehabilitation, at the end of May 2016, we went on holiday to Italy. A special holiday because our youngest daughter went with us for the last time. Unfortunately, the holiday did not go as well as we hoped for. I thought I was ready to handle the whole world, but I needed more time to be myself again.

The prospects for the future that the doctors had estimated for me were not that positive. But I turned out to be strong and recovered quite well. Despite the residual symptoms, such as a bad memory, being easily overstimulated and having difficulty concentrating and processing information, I try to do as many fun things as possible. After all, things can be different just like that. It is a pity that I cannot work, but I do enjoy our wonderful grandchild to the fullest and do everything I can to be as positive in life as possible.

My GP looked at me and knew enough. He confirmed to me what I was already thinking, but mostly not hoping for: encephalitis, round two. The GP immediately referred me to the neurology outpatient clinic at Radboud UMC Nijmegen.

Here, the neurologist performed various tests such as physical tests, an EEG scan and blood was drawn. The blood was sent to Erasmus MC. I was allowed to go home again as there was no frame of reference. When leaving the room, I collapsed through my legs. Still, that was no reason to hospitalise me. After a turbulent night at home, it was decided to do an epidural after all. The cerebrospinal fluid was first examined in Radboud and then sent to Erasmus MC for analysis. Finally, it was decided to admit me to the neurology department for observation. The nursing sisters recognised me, I did not recognise them.

The night passed quietly and the next day the blood test results were out. As thought, antibodies had been found in my blood. From then on, we knew what was in front of me and treatment was started after a few days. The diagnosis was the same as last time: anti-NMDA receptor encephalitis.

My name is Susan, I live with my boyfriend Ward and work as a mobile merchandiser. My story begins in November 2013. At that time, I was 21 years old and had just started a new study at Saxion University of Applied Sciences in Enschede. During the week, I lived in a student house and on weekends I could be found at my parents’ home in Brabant. There I had my side job and group of friends. At one point, I no longer knew my way around Enschede. How to get to my student house? After cycling around for a while, I finally found my house. I regularly called my parents for help. How do I take off my shoes? How to brush my teeth. These questions seemed strange to my parents anyway. They decided to pick me up in Enschede and take me home. From then on, it was a black hole for me.

I later learned from my mother that 3 weeks after they picked me up in Enschede, I received home support from the GGZ. My health was deteriorating.

On Saturday morning, during the St Nicholas weekend, I had my first epileptic seizure. Another one followed in the early afternoon, and I was admitted to Radboud UMC Nijmegen. There it turned out that my breathing and heart had stopped functioning properly. When I was admitted, the question was which of my parents would stay with me. In the end, I lived with my mother, alternating in turns with my father, brother, and then-boyfriend, in a two-person room at Radboud for a month. My mother made sure I got my medication exactly on time.

On 6 January 2014, I ‘woke up’ in a rehabilitation clinic. Of course, not understanding what was going on. Here I received all kinds of therapies: speech therapy, occupational therapy, creative therapy, and there was weekly swimming. I had to relearn all kinds of things and little by little I scrambled up. After 3 months, it was time to go home.

On 6 January 2014, I ‘woke up’ in a rehabilitation clinic. Of course, not understanding what was going on. Here I received all kinds of therapies: speech therapy, occupational therapy, creative therapy, and there was weekly swimming. I had to relearn all kinds of things and little by little I scrambled up. After 3 months, it was time to go home.

After this intensive period, I underwent another external rehabilitation and at the same time decided to resume my studies. School helped a lot and they tried to make it as feasible as possible for me. Besides my studies, it was only rehabilitation. There I got car driving lessons, for example, which helped for self-confidence.

After two years, I decided to quit my studies and start working. I eventually managed to get a part-time job for 24 hours a week. This allowed me to spread my energy well throughout the week.

No cause was found for the condition. And I had never considered that the disease would strike a second time, until the moment I was in America with Ward in 2019. The neurologist first thought of burnout. My new job, a new house and the trip to America must have been too much for a while. After all, encephalitis twice is not common.

Where did it come from this time? In the end, I spent another month in hospital. CT scan, MRI scan, there was a search for a cyst. Indeed, in women, it is common for a cyst near the ovaries to be the cause. A small cyst was found and immediately surgically removed. The cyst turned out to be clean.

After the operation, my health deteriorated rapidly, and I ended up in the ICU. Eventually, I was given the same treatment as the first time, with Rituximab added. After a month of hospitalisation, I went to a rehabilitation clinic, a different one from the first time. Rehabilitation there was difficult, especially to turn the knob and get back to “normal” life.

To this day, no cause has been found. The fact that no cause has been found has changed my life, but it has also brought me a lot. Supported by my boyfriend, family, friends and everyone with a listening ear, I can accept it better. I am proud of that. It was a journey I will never forget.

Meanwhile, I had been to the GP surgery twice, but unfortunately I had also been sent ‘just’ home again. It was Saturday night, I had asked a friend to sleep with me because I was feeling bad. After a terrible night, she went home, and I called my parents to ask if they could come. Also, my neighbours came to check on me. I couldn’t find words, couldn’t make sentences, I was just babbling. Thinking for myself about how I was doing suddenly became impossible. A few minutes later, hanging between my father and the neighbour, I went to the GP station for the third time. My father did the talking and said, “If you don’t keep her now it won’t be all right!” I was able to stay, thankfully, my light bulb went out….

No one knew what was wrong with me, no neurologist, no one. It stuck to the standard tests, they left me…. Because what can you treat someone with if there is no diagnosis? However the situation worsened: seizures, walking and talking became very bad, ‘Out of this world’ I was picked up by ambulance on 24 June and admitted to the UMCG. My children were taken care of by their father and grandparents, and school also showed every understanding.

On 4 July, after a lumbar puncture (medical procedure in which cerebrospinal fluid is taken from around the spinal cord), the diagnosis was finally made, namely autoimmune disease anti-NMDA receptor encephalitis.

Treatment was started with immunoglobulin and prednisolone. Fortunately, the treatment worked well and I was allowed to return to Meppel by ambulance after 12 days. Not to cheer too soon, because after about 4 weeks I suffered a relapse. And I was driven back to the UMCG by ambulance. Once there, I was found to have acute Hepatitis and a biopsy was taken. Conclusion: probably autoimmune as well. I had side effects from the prednisolone. I was also given azathioprine which was later found to be the possible cause of the Hepatitis. After this relapse, it was decided to start Rituximab in August. I was doing significantly better after treatment with Rituximab. Even with physiotherapy, walking with a walker, going outside in a wheelchair and exercising words with my mother, things went in the right direction step by step. I had not seen my children for a long time due to this relapse, and now that it was possible again, we cuddled a lot.

After a period of four months, I was discharged from the UMCG and transferred by ambulance to rehab centre the Vogellanden in Zwolle. By now it was 12 September, and a time of rehabilitation began. I stayed internally at the Vogellanden; my days consisted of ergo-, physio-, activity therapy, movement therapy and psychology. For my children, I was close by. When they came out of school, they ate with me and we often had a lovely swim. The frequent contact with my children at Vogellanden certainly contributed to a good recovery. On 24 December I was discharged and allowed to go home, which was beyond words; SO FINE! How much we enjoyed Christmas, New Year’s Eve, and my eldest son’s birthday. On 6 January 2014, day therapy was started for two days a week at Vogellanden. This course lasted about a month.

In this new year, I received help from Professionals in NAH (Non-Acquired Brain Injury). In Vogellanden, I had already met Aafke, and it instantly clicked. Together we got my life back on track after being away from home for seven months. A lot of administrative and household work had been left behind. My children immediately moved back in with me; we couldn’t wait. With help from grandparents and friends, it all went well.

It’s April. For check-ups, I still had to visit the UMCG regularly. After undergoing yet another lumbar puncture, the neurologist was unfortunately not satisfied with the results. Erasmus MC was contacted and advised to undergo a course of cyclophosphamide (chemotherapy). Through an infusion, once every four weeks, for six months. With a taxi I drove back and forth to the UMCG and by the end of the year the cure was completed. Regular check-ups and monthly blood tests followed. However finally in January 2018, I was discharged; everyone was happy. Everything in me felt I could survive this, I had faith in myself and my body!

“A winner is a dreamer that never gives up”

What remains a strange and wonderful experience is that I hardly got any of this. Information was not immediately re-stored in my memory even then. Because of where the brain is damaged, the temporal lobes, this is permanent injury. This concerns long-term memory. I lost at least 12 years and maybe more. I dare say now that I am doing well. After a recovery time of five years.

A sour moment concerned the company doctor’s examination. She thought I could work 32 hours again. So I ended up in unemployment. At my work, the moments of absence were so short that no one there raised the alarm. For instance, I regularly failed to find my desk, as I was later told. Having moved into a completely different setting, this did not seem uncommon. I was kept on hold by the GP for more than a year. Burnout was and remained his conclusion.

But what is the case? From the age of 12, I have kept a diary. Dated and archived. Right now, there is a stack from 2015-2017. The threshold to read back is still too high. I do know in retrospect, though, that in 2015, this disease was already in play. How nice it is that I can read back the many years I lost when I am up to it! Meanwhile, I am mobile again and count my blessings. I am still blessed with a rich social network, including several long-term friendships. Which means my friends can also partly fill in the gaps in my memory. Am I so mobile that I have been driving as a volunteer driver for Project AutoMaatje for a year and a half. In Enschede, a collaboration between the ANWB and Alifa Welzijn, my former employer. Transporting people who are no longer able or allowed to drive themselves to appointments. More personal and tailor-made than, say, a taxi company can do. Soon there will be the final examination for my driving licence because of my illness.

Meanwhile, Dr Titulaer found a fellow sufferer for me. We have e-mail contact and soon we will meet. Sharing is good. The national day was still a step too far for me. I hope to be there next year.

Unfortunately, on 17 March, my long-cherished dream turned into a nightmare. Suddenly I fell seriously ill, I became unconscious and was admitted to the small hospital where I was working the day before. Unfortunately, due to insufficient medical facilities, they could not help me, and after 3 days I was flown by Flying Doctors to a well-developed hospital in Nairobi, Kenya. Here I spent some time in ICU and was diagnosed with meningitis/encephalitis. After weeks of recovery and rehabilitation, I was determined to complete my internship. Step by step, I started working some hours in the hospital again. Fortunately, the work pace and pressure is a lot lower than in the Netherlands. When I got home, I was exhausted and went straight to bed. We also lived in such a bubble there, there was little else we had to do apart from internship. Except for washing our white uniforms by hand. Miraculously, I passed my internship and graduated as an HBO nurse.

Of course, I had been very aware all those months that something had changed in my head, but I hardly dared to show it. I was extremely tired, always had headaches, word-finding problems, and simply thinking took a lot of effort. Because of visual problems, I had trouble reading and keeping an overview. In addition, I was constantly dizzy and nauseous due to impaired balance. Despite being so incredibly tired, I suffered from insomnia.

While working in the hospital, I received many patients with meningitis or encephalitis. Adults but also many (young) children. Due to limited resources and financial barriers, many could not be treated. Seeing these patients die when I knew these options were available a few hundred kilometres away was tough. Some luckily survived, but rehabilitation? They don’t know that in that region. When I grumble about Dutch care, I think back to that a lot, and feel a wave of gratitude and humility wash over me.

Once I returned home to the Netherlands, I couldn’t keep up appearances. My family and friends immediately realised something was seriously wrong, and then the whole medical mill started turning. MRI scans, lumbar puncture, many hospitals, tests, and different doctors. Diagnosis: non-congenital brain injury. I was reported to a rehabilitation centre, but during the intake interview I was immediately told that the time for spontaneous recovery was already over, so I was mainly going to learn to live with my limitations.

I was declared completely disabled for the rest of my life. I went through the rehabilitation programme for seven months but did not achieve any of my predetermined goals. Then I sat, as a 25-year-old adventurous and ambitious woman, at home on the couch living the life of a senior citizen. I felt hugely left to my own devices.

In July 2019, I attended Cognitive FX in Utah and this has been the stepping stone to recovery for me. Finally fighting for neuroplasticity, instead of just putting up with it and applying compensation strategies. A period of several new treatments broke out, each adding something to my recovery. One was Surf Therapy. My balance was extremely poor, due to vestibular problems I was constantly seasick. By far, I found this the most enjoyable therapy of all, I finally felt like I was alive again! I slowly started surviving daily life and had energy left over to start living again. But where do you start? I became a participant of The Class of The Brain Foundation (then known as the Edwin van der Sar Foundation). A reintegration course for young adults with NAH, focusing on work and exercise. I was lucky, my sports coach was a bruising surfer from Scheveningen. So you guessed it, in winter I was on a surfboard in the cold North Sea. I loved it! The waves, the cold salt water, the wide horizon, the playing and the spaciousness of the beach had a healing effect on me. In fact, every week I wanted nothing more than to surf. Whereas, in the beginning, it took me an awful lot of energy, I was constantly rolling off that board and getting dizzy and nauseous from the swaying of the sea. However, with building up and exercises, this got better and better. Physically, I was making great strides, but mentally, too, there was a turnaround. I regained the adventurous Carlien a bit, but at the same time I also learned to embrace my new version.

At the same time at De Class I was also investigating what I wanted and what my possibilities were in terms of work. One thing had become clear to me: I was happy on the beach. So I wanted to spend a lot of time there. I signed up as a volunteer with the Surf Therapy Foundation. They give surf lessons as a hobby for people after their rehabilitation. I enjoyed it, got a lot of satisfaction out of it and my self-confidence got a huge boost. ”Nobody holds the waves, but you can learn to stand, nobody holds them back, but you can handle them, watch you go” from Diggy Dex’s song Waves became my new motto.

Wonderful opportunities came my way, for example, I spoke at the global congress of The International Surftherapy Organisations, I organised the National Adapted Surfing Championships and, as a coach, I went with them twice to California for The World Championship Para Surfing (including together with Britt, an ItsME fellow sufferer). A year ago, the rehabilitation centre Zelfzorg aan Zee was founded by neuro rehabilitation doctor Tijs van Bezeij. He asked me if I would like to work here as an expert by experience, and so my new ‘purpose’ was born. My own experience with the therapeutic value of surfing, and with living with brain injury, I could combine nicely here. I did the experiential therapist training and dove right into the influence of the sea on our brain. I could talk about this for hours, so I won’t bother you with that now, but if you are interested in it know where to find me.

Fortunately, I can now call this new passion my work. At self-care by the sea, we go on the beach and into the sea with an interdisciplinary team to work on neurological recovery. In the rehabilitation programme, participants (with NAH & lung covid, among others) take on challenges and discover new possibilities. It gives me immense satisfaction to see that through self-care at sea, participants regain a grip on their lives. Of course, I still regularly miss the old Carlien, but it is never too late to rewrite your dream. I wish the same for you because a lot is still possible!

Consultations at the UMC Utrecht gave no clarity and the head of the neurology department, who was called in, clearly showed that he didn’t understand a thing and sent me home, via his assistant, with the message that after a few weeks another EEG would be made. We should never have accepted that because, in retrospect, I should have been admitted immediately so that the seizures could have been doused. Six weeks later at the EEG, the lab technician immediately saw that something was very wrong and called a doctor who, after consulting back, decided on acute admission. However, they did not know what was causing all this.

After two admissions to the UMC, there was physician assistant neurology who thought…, couldn’t that be it…. And bingo, after consulting with Dr Titulaer at Erasmus MC, they came up with LGI1, a rare autoimmune disease. With prednisolone, the attacks quickly disappeared. Short-term memory loss remained, though. Of those two years before, I remember little. I did three months of ambulant rehabilitation at rehabilitation centre de Hoogstraat. I am very happy with that. Gradually, I regained control over my life and, above all, regained confidence in my body!

Now I am six years down the line. My short-term memory is clearly less than it used to be. I write down important things that I used to remember as if naturally, so that I can re-read it. If someone mentions what happened, I remember. Coming up with it by myself doesn’t work. I was ashamed that I quickly forgot what had been agreed, for example, and didn’t dare come out and say it. It then seemed as if I didn’t care. The acceptance process takes a lot of time and I still occasionally run into my limitations because of the LGI1.

I still have small to medium-sized seizures. It keeps searching for the right medication. So far, I haven’t managed to find medication that is adequate and that doesn’t have annoying side effects. And I am oh so happy with Erasmus MC in Rotterdam with Dr Titulaer and his team. It’s coming home to people who know what you have and what you’ve been through.

If any fellow sufferers need contact about LGI1 and want to share experiences. You can get my phone number via ItsME. I am happy to exchange thoughts with you about this.

The two weeks in hospital were followed up by two months in a rehabilitation center before continuing to go to hospital about three times a week for further rehabilitation for about a year. From my outside, you cannot tell that so much has changed inside. I used to have a very strong memory, but now I must wait and see if I remember anything. Whether you show me a picture from ten years ago or from last week, it is unpredictable whether I can tell you where it was taken or what I was doing then. Doing everyday things usually goes well if it goes in a fixed order and in the same place. Telling something goes well too, at least if I feel the space to find my own words and am not too tired. For if you point to something and ask me what it is, there is a very real chance that I don’t know that word. I know what it is, often I know the first letter of the word too, but naming the right word remains a challenge.

Everything takes much more energy than before, just because nothing comes naturally anymore. I know now how much I used to be able to do without consciously thinking about it. Doing several things at once was normal. Now that is a very big challenge. Without the help and support of my partner and tools like detailed notes in my diary, a lot would go wrong.

In the first part of my rehabilitation journey, I did not want to accept the fact that I would no longer be able to do my job. I had been working at the Dutch College of General Practitioners for more than 20 years. Work that gave me the feeling of doing something meaningful in an environment with very fine motivated colleagues. I didn’t want to leave that. I was working full-time and that combined with my travel distance meant that many hours of my daily life went to work. Eventually becoming fully disqualified and having to find a way in this new reality was not always easy.

But having said all this, I also feel rich. I have learnt that it does me no good to keep worrying about what I can no longer do, and that it offers much more to focus mainly on things I can do. Nature photography is an example of this. My world is much smaller, but even in that small world there is so much beauty to be found. I regularly go out with my camera to take pictures of animals like birds or butterflies. Then again, sometimes I don’t know which button to press, or which position my camera should be in to take the best picture, but it has opened a new world for me. Birds that I did not notice a few years ago, I now suddenly see somewhere. And it is such moments that make me realize that it matters a lot of what eyes I look at my world with.

I am fortunate to have a partner who is always there for me and who has helped me tremendously in finding a new path after my encephalitis. Hopefully my story makes it clear that her life too has been incredibly changed in many ways by my encephalitis. For me, this is also one of the reasons for sharing my story through this medium. Because more research is desperately needed. Not only for the affected but also for the loved ones who are also hard hit by it!

When I got more mobility, I was able to exercise more with the physio. Four weeks later, I was transferred to another unit and could again walk small distances independently and even climb stairs with support. Things seemed to be moving into the right direction. After a few days on the new unit, my parents noticed that I started showing different behavior again. Which seemed like the behavior I had before my hospitalization. I also deteriorated physically; I couldn’t even walk anymore. Several doctors and even a psychiatrist was called in, as it was thought I was having a relapse due to the intense event I had experienced. My parents knew there was more to it but were not heard in this. After a few days, the physio and ergo therapist also noticed that there was more to it. Based on their findings, I was given another MRI scan. This showed that I had anti-NMDA receptor encephalitis. Again, I was given all kinds of tests and the immunologist was called in, and he gave me Rituximab. This medicine helped me make great progress. My tracheostoma was also removed. A week later I was discharged from the WKZ and went to rehabilitation center de Hoogstraat in Utrecht.

At de Hoogstraat, I had a fixed daily program of therapies such as physio, occupational therapy, speech therapy and sports. I then learned to walk, cycle, eat and other everyday things again. I also learned to think properly again, remember things, do several things at once and did many exercises for fine motor skills. Through these therapies, I made great improvement every day. After six weeks of clinical rehabilitation in De Hoogstraat, I was allowed to go home. Then I had another four weeks of outpatient clinical rehabilitation at De Hoogstraat, after this I was fully discharged.

After that, I went to Valencia with my parents and brother. When I was in hospital, a doctor signed me up for Make a Wish. The work week from school to Valencia had already been planned, but my illness made it impossible for me to go along. The Make a Wish Foundation did make this possible for me. This gave me even more motivation to recover quickly.

After a very nice holiday, I was able to resume normal life. I went back to school, and I even had a part-time job in the supermarket. At this point, I really thought I was all better, because physically I was doing very well. Now, a few years later, I understand this thought. But looking back, I was still recovering at that time. When I had just recovered, I immediately left ‘being sick’ very much behind. I wanted to get on with my life and I did. One year later, the emotions of what had happened emerged. I recognized that it was all very intense, but I didn’t really realize this at that moment. Because of medication, my appearance had changed a lot and my inner self was not entirely the same as before. I had really lost myself. Because my face was less and less swollen, my appearance changed almost by the month. Every time, I thought I was back to myself. Now, five years later, I really feel that way. This intense event in my life changed me as a person because you start looking at life very differently after such an event. Now 5 years later, I am a motivated student at MBO, and a fanatical footballer. Not everything can be taken for granted, that’s really something I’ve found out.

We are now six months on. I was so happy that they had finally found what it was. I was immediately given a mix of all kinds of medicines through an IV. Once home, I soon found out that I completely lost episodes in my life. Names of loved ones I don’t remember. This disease has made its presence felt in my brain. Fortunately, I have a wonderful partner who helps me. One example is organizing the medication in a weekly cassette. I can’t manage that. I must be careful not to freak out. I want to remember everything and that is impossible. Slowly but surely, I am getting back on my feet. In April 2021, I took the last immune suppressant, a milestone.

Ultimately, this disease also shaped me into the transformed person I am today, and I feel good about that.

In late 2022, my younger sister, got the same diagnosis. She has totally different disease symptoms and it is not hereditary! Her luck has been that she told the doctor about me. Through a blood test, they discovered it. She is going down the same path. That is why it is oh so important that research is done on this rare disease. Why did me and my sister get this? The sooner they recognize the disease, the better off you will be.  This can only be done through research, which takes a lot of time and costs money. That’s why I ask to support this foundation, every little bit helps.

After two months, I had recovered somewhat and after considerable insistence on my part, I was allowed to continue rehabilitation at the Bravis hospital in Roosendaal. Finally, I was home again. On 1 September, a beautiful Monday morning, we were supposed to go cycling but we didn’t get that far. I suddenly suffered an epileptic seizure and had to be rushed back to hospital. There I spent a week in the ICU in a coma. To this day, I must take the drug Levetiracetam twice a day. Afterwards, I went to the Amsterdam UMC for a follow-up check by the neurologist our neurologist in Roosendaal had spoken to. A kind of second opinion so to speak. He couldn’t add anything further.

Meanwhile, my smell and taste were still gone. After some searching, we ended up at the smell and taste center at the Gelderse Vallei Hospital. There I was prescribed prednisone and to this day I am having smell and taste one day, and I feel active. The next day I am very tired and have no smell and taste.

The total rehabilitation of two years has done me good. I started driving again after two years, which has given me self-confidence and freedom. I also started playing golf again and went to the gym and that has had a positive effect.

I am Michel van den Adel, account manager, married to Rose and father of Mees, Bodil and Fenne. On 22 April 2020, I am 49 years old when Roos observes that I show strange behavior. Strange in the sense of mixing things up and thinking my grandmother is still alive when that sweetheart passed away over 3 years ago. Fortunately, Roos is bright enough and calls in the GP, who asks me two questions and sends me straight to the Ikazia in Rotterdam. At the Ikazia, very strict rules apply in connection with Covid19 and Roos can do nothing but drop me off at the unit and must leave the building again. Visits are not possible, and we can only have contact by phoning and texting. A 10-day stay at the Ikazia begins. Through a lumbar puncture and the sampling of several blood tubes/vials, it is soon discovered that I have encephalitis on the right lobe of the brain. An Immune reaction to any infection presents somewhere in the body. A mild form of permanent memory loss may result, it is made clear to me. The Neurologist-in-training also told me that all this could have been caused by a tumor… “but don’t worry, we are going to examine you completely”. Well, the emotional rollercoaster was spinning overtime, that much is clear.

Nothing but good things about the Neurologists team, by the way! The team, based at Erasmus MC and led by Professor Titulaer, has been specialising in the different variants of Encephalitis for several years now, and I soon felt I was in very good hands with ‘my’ Neurologist Dr De Vries. Now that it has become clear that I have (unfortunately not yet what caused it; even now Feb 2023), we can start fighting it. Prednisone via infusion is the motto for the next few days, which ended up being 10 days and I was allowed to go home ‘for a while’. A biweekly check-up at Erasmus ensured that soon I was admitted again to Erasmus MC Rotterdam for a period of 5 days. Here they are going to try to get rid of that inflammation with higher doses of Prednisone. The inflammation has a special side effect in the form of ‘goose bump attacks’; about 30 times a day, out of nowhere, I get a tingling sensation throughout my entire body, resulting in goose bumps all over. This side effect is classified as epilepsy and if I have it, I cannot and must not drive, which makes working quite difficult. On decreasing those seizures, they can read that the inflammation is disappearing. So, in addition to taking six different medications, I get to start counting how many times a day I get a goosebump attack.

Meanwhile, we are somewhere in May 2020 when, after 5 days of Erasmus admission, I am allowed to go home with 6 different drugs and the same instructions for use. A detailed tapering schedule should ensure that I get rid of that Encephalitis in a safe way and do not get addicted to all that medication. The peaking goes well and soon I drop from 30x a day of goosebumps to 25x, 20x, 15x a day. After that, it doesn’t go down as fast, and I still have those attacks at least about 8x a day. At that point, Rituximab is brought up and that, in addition to my medication which continues as usual, should be the outcome for stopping that inflammation in my brain. I sign a statement understanding the possible consequences when using Rituximab and three appointments are set for day treatment with Rituximab via infusion.

On the first of three consecutive days that I was supposed to receive this treatment, my blood levels turn out to be not good and Rituximab cannot be started. Worse, the Neurologist-in-training dragged me from a CT scan to a PET scan that day, only to conclude, after an Echo around the Gallbladder and a lung X-ray, that it was not that bad and that the elevated levels were probably caused by use of Co-Trimoxazole. Result: new appointments made for a month later and one less medicine. As a result, I was also immediately rid of the pain in my joints, which was thus apparently caused by the bacteria-resistant effect Co-Trimoxazole.

It is 29 June 2020 when I am allowed a second attempt to start Rituximab. I remember this date very well because this is also the date, I had my very last goosebump attack! I got that one while taking the Rituximab through the infusion and that was also my last turf moment. After that, I had two more days of that drug treatment and neatly finished the medication course at home, but those goosebumps attacks have not returned until today. That was the sign for me (and fortunately for Dr De Vries too) that the inflammation was no longer present: I could slowly start looking forward to participating in normal life and work again.

In the meantime, I was still fully examined by a Neuropsychologist at Maasstad Hospital in Rotterdam. Fortunately, the result of this was like the Promiss examination, which I also participated in and am still available for; NO damage to the cognitive side or rather no permanent damage to my brain at all. Okay a small black hole between December 2019 and April 2020, but I’ll take that for granted.

Three months after the last goosebump attack, I was allowed to drive again and could start working half-days again. I looked like a small child so happy, the moment I got back into the car alone for the first time and drove slowly away: tears ran down my cheeks; of joy. And even now, almost three years later, it still makes me emotional. That something so small can have such a huge impact on someone’s life, but certainly also on the lives of those close to them. Because what I didn’t realize in all those months was the impact my illness had on my family’s life. In the beginning, also thanks to Covid19, because visits to the hospital were not possible and they couldn’t understand what was going on with me either. So when you first start reading up on what it is and what the consequences can or could have been, you’re forced to face the facts. The realization that there are not only many different variants and that it is still very rare, but also that people die of it, was a real wake-up call for me.

I count myself lucky that I can still recount it and that after being checked twice a year by the neurologist I can now say: I got rid of it! Doesn’t take away the fact that you start listening to your body very differently and you stop at every signal from the brain.

Wednesday 22 April 2020 was the day that the world stood still for a while for me. Fortunately, the world kept spinning and I am a 100% participant in this time again and the memory loss was only limited to a black hole from December 2019 to April 2020.

The assignment was to write a short piece. I really can’t do that if I want to recount everything in detail. And this period is not even over yet. I am still on a journey of recovery now after 7 years. Why did I choose this title (The Black Hole)? The reason is that I don’t remember much of all those treatments. But it’s mainly because of the period of roughly a decade or so before 2017 (before that first course of “Nanogam and Prednisone”): a big black hole.

In 2016, Ans and I were married for twenty-five years. A celebration to remember anyway. We all gathered at the restaurant De Goffertboerderij in Nijmegen. A location familiar there. Children, grandchildren, siblings and friends and acquaintances were there. A very successful day with beautiful gifts. I know they were there from the photos. Remarkably, I can only really remember one thing from that day. Namely: where I had parked our car in the car park. And for the rest, I remember nothing.

First a bit of history. My name is Roelof Landman. I was born in Friesland and have lived in Nijmegen since the 1970s. There I worked in education until my retirement. Primary education and mostly in the middle grades. With great pleasure and, I imagine, many holidays. I travelled a lot in those holidays through Europe by bicycle and later by tent and later again by caravan. After my retirement, we would have liked to travel some more. Unfortunately, that didn’t happen. We do go on holiday now. But closer to home and to a house somewhere in the Netherlands. And the Netherlands is beautiful too.

Now, it’s February 2023, and we have quite an intense period behind us. Initially, it appeared to be a form of epilepsy. But the neurologist who diagnosed it started looking further and came up with the message that it was Caspr2 encephalitis. We had never heard of this before. An inflammation in my brain due to a disrupted immune system. Somewhere in my body there had to be a cause for this to happen. So, searching with MRIs, among other things. During the first treatment with Nanogam and Prednisone to fight the inflammation, I was told by the ward doctor that an MRI had discovered a tumor in my esophagus. Below, I will describe the sequel in telegram style:

• Four recurrent inflammations in about three years. So again, on the drip and later also with day treatments (Rituximab). Since last year thankfully no recurrent inflammations until now.
• An esophagus removal/surgery. I now have a tube stomach. And things are going very well.
• During a visit to the neurologist, I developed problems with my heart. Heart/atrial fibrillation. I now have a pacemaker. My heart is still beating, and I am satisfied with this.
• Since a year, I know that I also suffer from Parkinson’s disease.

Now I will stop my story shortly and want to return to the title of my story: ‘The black hole’. This title may make it seem that there are no bright spots. And there certainly are. With pointing them out, I will now wrap up. First, I have become much more emotional and want to let it be known that I would have had a much harder time this period without Ans. She was there for me. It was also a difficult period for Ans and the children. Brain encephalitis is a nasty disease, not only for the person it affects, but certainly also for those close to them.

What was causing the symptoms was unclear at that stage, and it would also take a long time before the correct diagnosis could be made. It was initially assumed to be a severe form of neuritis vestibularis (a disorder of the balance organ) and no further investigation was carried out, despite further deterioration. Six days later, an alarm bell nevertheless went off for the doctors, the symptoms worsened, and a different clinical picture was suspected. A transfer to another location (neurology department) of the hospital followed. There, again, no clarity on the cause and they did not seem to know quite what to do with me as a patient. Several possible causes and clinical pictures passed in review, but none appeared to be the right one.

Meanwhile, I was severely weakened. Constant spinning dizziness and constant vomiting and inability to eat have resulted in worrisome weight loss and physical condition. A nasal gavage and fluid infusion were necessary. It was no longer even possible to sit up independently on the edge of the bed during this period. The sense of balance disappeared completely. Speaking is very hard, without intonation and very slow.

In addition, mentally it was a tough ordeal. The vertigo means that basically no activity could provide distraction or relaxation. Visits from close relatives were the only bright spots. But even the presence of one’s own children was soon too much. The fact that no diagnosis could be made for a long time meant that there was no prospect of improvement in the constantly deteriorating situation.

Only after contacting academic hospitals could, it finally be established in cooperation with Erasmus MC in Rotterdam that it was anti-NMDA receptor encephalitis. Cysts in the ovaries were the cause of an immune system reaction. This involved the production of antibodies that attack one’s own body, in this case the brain. Resulting in the severe symptoms described earlier. After being diagnosed, a surgical procedure was urgently scheduled to remove both ovaries. After the surgery, my medical condition slowly but surely improved. After eight weeks in hospital, a period of almost six months of clinical rehabilitation followed.

Getting food in without a tube, learning to walk, write, talk again. It all came up. Slowly but steadily, my physical condition improved. During the rehabilitation period, I also started processing the intense period in hospital. The serious medical deterioration, the uncertainty about the diagnosis, the removal of the ovaries. In addition, the realization that I could barely fulfil my maternal role during this period caused serious psychological problems.

After eight weeks in hospital and almost six months in the rehabilitation center, discharge home finally followed. Due to the balance problems, a walker was still needed for moving around outside the house. During the outpatient rehabilitation period, the walker also became redundant, and more and more independence was regained. We purchased a three-wheel cargo bike to still be able to cycle with the children.

Now, more than five years later, there are few complaints left. I can look after the children independently, work three-and-a-half days a week as a secondary school teacher, cycle on a two-wheeler again, play badminton again and enjoy life. The visible reminder of five years ago are slight balance problems. We experience it as a miracle that the residual symptoms are minimal after such a long period of illness with very severe failure symptoms.

After more than a year of examinations, the neurologist did not know any more. It was decided to get a second opinion at Erasmus MC. At the very 2nd appointment (2nd quarter 2021), we received a diagnosis: anti-GAD encephalitis. This is a very rare autoimmune disease, of which only 70 people in the Netherlands have it. Often the disease manifests around the age of 30 and a diagnosis follows. In my mother’s case, however, this happened much later. In this form of encephalitis, your own body attacks your cerebellum, which is why my mother’s walking was so bad. Finally, after more than 1½ years of insecurities and uncertainties, we had a diagnosis. The biggest fears came up: is there something in the head and will it ever get better?

My mother’s first question was: ‘Can I become old with this?’ The answer was that she can just live to old age with this, but she has to have IVIG infusions every month for the rest of her life. The first few times, she was ragged. She started with 5-day treatments and has since been reduced to 1-2 days a month. During the treatment, she does lie on the infusion all day, as it has to run in slowly. Fortunately, there are very few side effects then.

Slowly, more and more peace is coming. She has finally been discharged from work (after much struggle, because she had to keep applying for jobs while her employer was no longer willing to cooperate), she now walks with a walker (which was a very big step for her that she did not want to take for a long time, but now she notices the peace and stability), she feels better and more stable. She is still tired, and she does have to make conscious choices. She can’t always do everything in one day anymore, and knowing she has a busy day or something more intense, she really needs to recover the next day and then some of the pain returns. But her quality of life is good again, whereas 3 years ago that was far from the case. Now she enjoys life again and goes out by car with my father regularly.

I was rushed to the Radboudumc, the hospital where I worked after all. In the emergency room, my situation deteriorated further, and I was sedated. My friend was instructed to call my parents because it was not clear how I was going to get out of this. I ended up in the ICU and many tests and a cocktail of medication followed. In the end, I was found to have the Herpes Simplex Virus. This virus was the cause of a very severe encephalitis (inflammation of the brain). I don’t remember much of the whole period, but the things I was later told about it are bizarre.

I was eventually allowed to finish treatment with the virus-fighting drug Aciclovir at home with a PICC line placed in my arm. The district nurse helped with this daily and my friend was given an emergency course in nursing techniques. Unfortunately, I did not get better after this treatment, but deteriorated again. However, doctors did not take me seriously, because a new encephalitis would be very rare AND this encephalitis had been treated, after all. It would just be ”residual symptoms”. As a patient, I was powerless in this. More than two months later, fortunately Erasmus MC discovered that there was a second encephalitis in my brain. This was an autoimmune encephalitis resulting from the Herpes-Simplex encephalitis. Again, severe medical treatments followed, this time in the form of immunotherapy.

The brain inflammations left me with substantial brain damage. As a result, I have impaired balance and coordination, memory and information processing disorders, am easily tired, overstimulated and have many headaches, among other things. I also have difficulty recognising emotions and faces (prosopagnosia). In addition, I am left with a form of epilepsy that is difficult to treat. Despite several types of medication, I still have daily seizures.

After the last treatment, a long rehabilitation process of 14 months followed. I started this in high spirits, because in my perception I was ”better” again considering I had completed my treatments in hospital. But the therapies at the rehabilitation center were tough. I was constantly confronted with the things that no longer worked well, no matter how hard I tried. The helplessness, frustration and sadness over this were terrible. Fortunately, I had a very nice and warm team of practitioners and therapists.

My life has been completely changed by my two brain infections, even though I still have a whole life ahead of me. I have also been declared unfit for work and had to end my studies. What exactly this means for me and what impact it has on my life and that of my boyfriend is hard for anyone else to understand.

Even though I had to give up a lot, my willpower got me through it all and I still get a lot out of it. Where there is a will, I see a way, no matter how many roads it takes. It was through a fellow sufferer and now good friend that I ended up at Para-Surfing. Here people thought in terms of possibilities, because after all, I am much more than just my brain injury. I started living again and was even allowed to represent the Netherlands at the World Para-Surfing Championships in America in 2022! Besides a lot of misery, the disease has also brought connection, including through fellow sufferers!

By drawing more attention to Meningitis and Encephalitis, I hope it can be better recognised and treated in the future. The ItsME Foundation is very important for this!

My rehabilitation journey was tough both physically and emotionally. Little was left of a “strong, independent” woman. I felt weak, vulnerable, lost. It took me a lot of crumbs to embrace and accept the new Trodessa, Trodessa version 2.0. But now I dare say I love the new ‘me’, even with all its physical flaws. Feeling my own mortality, my encounter with death, has made me LIVE.

Among other things, in response to my meningitis, I wrote the book “The Meaning of Death. A mirror to the nonsense of life”. Perhaps this book can offer you support, recognition and inspiration.

I am grateful to still be able to breathe every day, to kiss and hug my children. Grateful that I get to feel the greatness of life in the smallness of the day.

It is an honor to assist ItsMe Foundation in their wonderful mission to enable more research for Meningitis and Encephalitis. All help is hugely welcome!

Finally, after four days, I am allowed to go home. Heavily in shock, we drive back to the Netherlands. Then start the years of examinations, MRIs, EEGs, blood tests, tests of memory etc. Many hospitals say they don’t know. Mistakes are made; in one academic hospital they say my amygdala is larger than in an average person and in another they say it is not. I ended up at the epilepsy expertise centre Sein. They don’t know either and try all kinds of tablets. It helps for a while and then the major and minor epileptic seizures come again.

Meanwhile, I have also been diagnosed with type 1 diabetes. I have to inject insulin. The internist looks into the situation further and, indicates that I should be ‘pricked’ at Sein for antibodies. They don’t want to do it at first and only after I got angry with my doctor it happened. 12 years have since passed! The results turned out not to be good. I have autoimmune brain inflammation in the amygdala. It later turns out that the inflammation is also in the cerebellum. Normally, people are diagnosed with a value of 10,000, but in my case, it turned out to be 384,000. Dr Titulaer of Erasmus MC explains the result with the words ‘we can’t ignore it’. On the one hand, you are happy that you finally know what is going on; on the other, you are sad. Your epilepsy, memory loss, not being able to walk in a straight line, not being able to keep my balance and shaking my head….. It all comes from that.

The journey of cures is about to begin. A journey I will have to undergo for the rest of my life. A Privigen cure every six weeks and a Rituximab cure twice a year. I experience a lot of side effects from these treatments, so I also take hydrocortisone. The value is dropping, but healing is no longer possible because I have continued with this inflammation for too long due to the lack of a proper diagnosis.

Meanwhile, a port-a-cath has been placed and I have the Privigen every four weeks. What caused me to get this inflammation remains a question. Perhaps it was something small. Maybe a mosquito from Thailand where we were once on holiday. Health is the richest good!