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 20 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!