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De nacht waarin mijn hoofd losschoot
Op 4 november 2021 kreeg ik een bacteriële hersenvliesontsteking. Na mijn ontslag uit het ziekenhuis hervatte ik geleidelijk mijn leven als ondernemer. Pas jaren later werd duidelijk hoeveel energie dat functioneren mij werkelijk kostte. Bijna vijf jaar na de hersenvliesontsteking begin ik opnieuw aan revalidatie.

Het begon met hoofdpijn. Niet kloppend, maar priemend, alsof de druk in mijn schedel geen uitweg meer vond. In de taxi naar het ziekenhuis moest ik overgeven. Mijn benen deden steeds minder en ik kon nauwelijks uitleggen wat er met me gebeurde. Ik wist mijn naam nog, maar iedere volgende zin leek verder weg te liggen.

Het was coronatijd. De stad was stil en onderweg naar OLVG Oost zag ik bijna niemand op straat. Bij de ingang werd ik direct apart genomen. Twee nachten lag ik alleen in een quarantainekamer. Er was geen klok en nauwelijks geluid, behalve mijn ademhaling en het tikken van het infuus. Daarna werd ik overgebracht naar OLVG West. Van die rit herinner ik me vooral het plafond van de ambulance en het schokken bij iedere bocht.

In het ziekenhuis werd ik wakker van een hoge, snijdende toon. Het geluid leek achter mijn ogen en midden in mijn oren te zitten. Mijn shirt plakte aan mijn huid. Het licht was onverdraaglijk fel en mijn nek voelde alsof het scharnier waarmee ik mijn hoofd overeind hield, was losgedraaid.

Een verpleegkundige vertelde dat ik een bacteriële hersenvliesontsteking had. Ik hoorde haar, maar kon de betekenis van haar woorden niet vasthouden.

Mijn denken was altijd mijn houvast geweest. Ik leefde van taal, overzicht en het vermogen betekenis te geven aan wat er gebeurde. Als juist dat wegviel, wist ik niet goed wat er van mij overbleef.

Ik sloot mijn ogen en wachtte tot de paniek zou zakken. De verpleegkundige legde haar hand op mijn borst. “Je bent hier,” zei ze. “Je bent er nog.” Ze bleef naast me zitten tot ik het plafond weer als plafond herkende en de kamer ophield te bewegen.

Toen ik het ziekenhuis mocht verlaten, was het directe gevaar geweken. Ik kon lopen, praten en mijn eigen voordeur openen. Daarmee leek het belangrijkste achter de rug.

Ik probeerde mijn leven opnieuw op te bouwen. Dingen die vroeger vanzelf gingen, vroegen ineens meer planning, rust en voorbereiding. Ik bewaakte mijn slaap, bouwde rustmomenten in en leerde activiteiten anders over mijn dagen te verdelen.

Omdat ik weer reisde, sportte en mensen zag, merkte bijna niemand hoeveel energie dit functioneren kostte. Zelf zag ik het evenmin volledig. Ik had mijn beperkingen zo zorgvuldig georganiseerd dat ik ze voor herstel begon aan te zien.

Op 4 mei 2025 hield die constructie geen stand meer. Ik stond op de Dam tijdens de Nationale Dodenherdenking, tussen duizenden mensen. Tijdens de herdenking stortte ik letterlijk in. Mijn benen droegen me niet meer en het gevoel trok uit mijn lichaam weg, alsof de verbinding tussen mijn hoofd en de rest van mijn lichaam plotseling was verbroken.

Jarenlang had ik gedacht dat ik voldoende was hersteld, omdat ik weer deelnam aan het leven. Op de Dam werd duidelijk dat mijn lichaam meer had gedragen dan ik begreep. Vanaf dat moment werd zichtbaar wat onder mijn dagelijkse routines verborgen was gebleven. Informatie kwam vaak langzamer binnen. Wanneer meerdere mensen tegelijk spraken, verloor ik de draad. Een gesprek kon tijdens het gesprek zelf goed gaan en me daarna uren kosten. Door mijn gehoorproblemen werd geluid moeilijker te verstaan en vermoeiender om te verwerken.

Na een lunch of een gesprek kon ik naar buiten lopen met het gevoel dat alles goed was gegaan, om pas later thuis te merken hoeveel concentratie het had gevraagd. De buitenwereld zag dat moment. Ik leefde ook met de uren eromheen.

Langzaam begon ik te begrijpen dat compensatie iets anders is dan herstel. Mijn ervaring, discipline en behoefte aan controle hadden mij geholpen om door te gaan. Tegelijkertijd hadden ze verhuld dat mijn belastbaarheid structureel was veranderd.

Bijna vijf jaar na de hersenvliesontsteking begin ik opnieuw aan revalidatie. Er lopen onderzoeken en behandelingen voor mijn gehoor, zicht en neurologische klachten. Daarnaast train ik, zwem ik en probeer ik een leven op te bouwen dat past bij mijn huidige belastbaarheid.

Ik gebruik die activiteiten niet langer als bewijs dat er niets aan de hand is. Dat ik een afspraak aankan, betekent niet automatisch dat er daarna nog ruimte over is. Sporten, reizen en sociaal aanwezig zijn passen niet vanzelfsprekend op dezelfde dag. Ik leer rekening te houden met de energie die een activiteit later nog van me vraagt.

Ik weet inmiddels dat zichtbaar functioneren weinig zegt over wat iemand moet laten, plannen of herstellen om dat functioneren mogelijk te maken. Misschien is juist dat een van de moeilijkste kanten van leven na meningitis: aan de buitenkant kan veel weer normaal lijken, terwijl je dagelijks opnieuw moet ontdekken wat je aankunt.

Soms kom ik na een gesprek thuis en merk ik pas bij de voordeur hoe moe ik ben. Ik zet mijn telefoon uit, sluit de gordijnen en wacht zonder te proberen de tijd nuttig te maken. Op zulke momenten denk ik nog weleens aan de verpleegkundige en haar hand op mijn borst. Daarna blijf ik liggen totdat mijn ademhaling zakt en de kamer weer een kamer wordt.

Mya was always a cheerful, sweet and lively little girl. First thing in the morning, she’d be chatting away happily – the sign that the day can begin. First, a cuddle with Mummy and Daddy in bed, then playtime – her most favourite thing.

Mya was only 9 months old. On 1 September 2023, she passed away from meningitis. Her mum, Mabel, tells us what happened.

On August 20, 2023, Mya had spent the night at her grandparents’ house for the first time. We picked her up early the next morning, as we couldn’t bear to be without her for so long. That afternoon, she had another breath-holding spell, something we’d experienced before. Afterwards, she was very tired. In the days that followed, we noticed that her behaviour was changing.

She stayed out of spirits, had regular fevers, and slept a lot. At the daycare centre and when she was with her grandparents, it was clear she wasn’t feeling well. The GP advised us to wait and see, and thought it might be a bladder infection, amongst other things. Because Mya responded well to paracetamol, it sometimes seemed as though she was getting better, but the symptoms kept coming back.

Over the weekend of 26 and 27 August, her fever continued. She wasn’t eating well and vomited for the first time. We went to the after-hours medical clinic, but they also couldn’t find a clear cause. The advice remained to keep a close eye on her.

On Tuesday 29 August, I was very worried. Mya had once again high fever and had now been ill for more than a week. The GP gave us antibiotics, but first we had to collect a urine sample to rule out a bladder infection. We couldn’t manage that, because she was barely drinking and wasn’t peeing.

That afternoon, her condition suddenly worsened. She became increasingly ill and was vomiting a lot. When we looked for help again, the GP immediately saw that it was serious. Mya was rushed to hospital and admitted to the paediatric department.

As her parents, we felt really helpless. Despite all the tests, Mya was getting sicker and sicker. That night, she had epileptic seizures. Eventually, it was decided to transfer her to Radboudumc. However, the transfer came too late. By the time she arrived at the paediatric intensive care unit, Mya was already in a critical condition.

We are immensely grateful to Radboudumc for everything they have done for our little girl. Unfortunately, the doctors were unable to save her from the cruel disease that is pneumococcal meningitis. An MRI scan showed that her brain had suffered irreversible damage.

On 1st September 2023 at 3.13 pm, our beautiful, cheerful Mya passed away in our arms.

Following the death of our daughter Mya Louise Mar Heijckmann, we soon felt the need to do something. Something for our wonderful daughter, but also something for other children. Mya was a social girl who loved playing with other children and was always looking to connect with others.

It is from this thought that the idea for MYAngel was born. Based on Mya’s physical features, we asked someone to design a soft toy so that her love, warmth and cheerfulness could continue to live forever in a special way. MYAngel is Mya as a guardian angel for children: sweet, joyful, social and comforting. Just as she was.

Through MYAngel, we aim not only to keep Mya’s memory alive, but also to contribute to a future in which fewer children and families will be affected by meningitis. This disease can affect anyone. That is why we believe it is important that continuous research is conducted to prevent, recognise and treat it.

Support ItsME – order a cuddly toy
All profits from the sale of MYAngel will be donated to the ItsME Foundation. In this way, as parents, we hope – on behalf of Mya – to contribute to more research, greater awareness and, ultimately, less grief for other families.

On our website you can read more about our own personal involvement with the ItsME Foundation, the significance behind the MyAngel soft toy, the support it provides, and how you can order one.

One Saturday in November 2023, I woke up from the alarm clock set by my partner, Simone. Since I was surprised that the alarm went off, I asked her why. “It’s Saturday, after all; I just have to work at my wine shop.” Pleasantly surprised, I said, “Wow, a wine shop—how nice.”

Simone thought my reaction was pretty strange because she’d actually owned that wine shop for 13 years by then. So, she checked again: “Do you know that you proposed to me?” Once again, I was pleasantly surprised: “No, but that’s so nice!”

You couldn't tell by looking at me. I finished my studies, I have a great job, and I'm just living a normal life. But underneath that “normal” life, I'm carrying a history that has shaped me to who I am now.

February 1, 2012
I was 14. I had just been diagnosed with MCTD—an autoimmune disease—when my body decided to go one step further.

That day, I was unusually cold. I had trouble walking, and my hands were shaking. When we got home from a birthday party, I walked straight upstairs without saying a word—something I normally never did. My mom was suspicious. And thankfully so. When my dad called me down for dinner a little later, I didn’t respond. He found me on the floor, having a seizure.

The ambulance took me to the AMC. I spent five days in the paediatric ICU, in a coma. After extensive testing, the doctors diagnosed me with brain inflammation—encephalitis. The exact cause remained unclear, but because of my recent autoimmune diagnosis, they opted for a high dose of prednisone. It worked. Slowly, I woke up.

It took me a very long time to realize what had happened to me. From one moment to the next, my body had shut me down. That feeling—of losing total control over yourself—has never completely left me.

My first steps out of bed felt like my legs were made of spaghetti. And even so, ten days after I woke up, I celebrated my birthday at home. No one had expected that.

The Road Back
At home, I recovered slowly. Fewer classes at school, but I was determined to finish that school year. That sense of control was so important. I wanted so badly to be normal.

The recovery was tough. The prednisone made me gain weight, and my energy levels dropped. But I kept going. Until March 7, 2013. Another seizure. Back to the paediatric ICU.
This time, the doctors knew immediately what to do. After two days, I woke up—clearer than the first time, but I also knew what to expect. Prednisone again. That long road back again. I gained twenty kilos, and that was hard—not because of how I looked, but because it made it obvious that something was wrong. And I wanted so badly everything to be normal.

Still, what stands out most from that period is the sense of warmth. The kind nurses, the visitors, and my father who stayed overnight at the hospital. My parents and little sister sometimes had a harder time than I did during that period—they thought I might not survive. While I had only one thing on my mind: moving forward.

Moving Forward
After the second brain infection, I went back to school. I split my senior year of high school over two years, studied at Eindhoven University of Technology, and completed my Master’s degree in 2023. That felt fantastic - proof that I could do it, although it took blood, sweat, and tears.

My parents often said that it was okay to take a step back. But taking a step back felt like losing control—and control was exactly what I needed.

Now
I’m 29. It’s been fourteen years. The time before and after are almost equal in length.
I live a life I’m proud of. I have a job as a construction consultant, where I finally don’t have to walk on eggshells anymore. Where I perform well without it taking everything out of me.

But I still feel the consequences. My energy levels are consistently lower than they were before that first day of February in 2012. And lately, even lower than in the years before that. I’m hyper-alert to what my body is telling me—that will probably always be the case.

For years, I refused to dwell on what really happened. Through the ItsME Foundation, I found a place where I was allowed to do just that. At the dinner at the Pillows Hotel in 2025, it felt as if a floodgate had opened. And as a coach at the Bondgenotendag 2026, I was able to give something back—to others walking the same path.

Encephalitis has broken me and built me up at the same time. It has given me a close bond with my family, great determination and the knowledge that I can handle difficult things.

It has made me into who I am today.

What started with mild flu symptoms, ended in hospitalisation on the intensive care unit in Cape Town, where Raymond fell into a coma and died only 10 days later

Raymond was 56 years old, Nicole’s partner and father of daughters Meike and Kimberly. Together they were looking forward to their last ‘family holiday’ now that the daughters were becoming too old to go on holiday with their parents. A wonderful tour in South Africa. 

Kimberly tells how her father Raymond was suddenly pulled out of life by meningitis.

Annemieke Ursinus tells the story of her husband Leon

It started in March 2004. Leon had severe headaches, so bad that he couldn’t tolerate daylight. All the curtains were kept closed. The GP saw nothing alarming: “Just take some paracetamol. ” But it only got worse. Within a few weeks, he was taking 8 paracetamol a day.

One day, I came home from work at lunchtime to pick up my car. Our five-month-old son Sam was upstairs crying hysterically. I ran to his room and found him alone in his crib, wearing only a diaper. When I came downstairs, I saw Leon lying on the couch. He was babbling incoherently, didn’t know his own name, didn’t know mine, and didn’t even know how our baby had gotten into bed. I could tell something was seriously wrong.

What on earth is happening to me? Heavily pregnant and struck down by encephalitis.

It was 2009, and I was 37 weeks pregnant with my second child. I had a headache; the pain grew worse by the day, and I began to feel worse and worse. We thought it was just a mild flu. When I developed a high fever, we went to the GP. Normally we don’t rush to the GP, but I was pregnant. The GP advised us to wait and see. A day later, I suddenly got up in the middle of the night to take a shower. During the day, my in-laws were with me to babysit our 2.5-year-old daughter and told my husband that I sometimes got a little disoriented in the house. My husband came home, saw me trying to send a text message on my phone, and noticed that I couldn’t manage it. My mother and sister had spoken to me on the phone and thought I sounded a bit flat. When I then developed a fever again and started talking incoherently, the whole circus started. At the hospital, they did a scan, a lumbar puncture, and blood tests. The neurologist suspected a brain haemorrhage or herpes encephalitis. It turned out to be encephalitis caused by the Herpes Simplex Virus. It completely turned my life—and that of my family—upside down.

I was just under 17 when my life suddenly changed. I started stuttering, stumbling over my words. More and more often, I couldn’t remember what I wanted to say, or how to say it. Simple things became confusing. I tried to screw a cap onto a bottle, even though there was already a cap on it. It felt as though my head was getting fuller and fuller, but at the same time I couldn’t tolerate any stimuli. Sleeping a lot, forgetting everything, blaming others in particular, which led to a lot of arguments, including with friends. I made a mess of my food a lot, and my day-night rhythm was turned upside down. Everything was a struggle. I was constantly tired.

The GP thought it was stress. The advice was to take some time off. But that didn’t help. Even in the quietest moments, I couldn’t speak anymore. My mum took me off school, hoping that rest would help. But it got worse.

Annelotte, aged 24 and Nicolette’s second child, used to say she would never grow old. Sadly, that turned out to be true. She will always be 24. Did she know it without realising?

In early August 2023, Annelotte had a sore throat. That infection resolved after a week. But a day later, she developed a sinus infection. That proved more persistent. The headaches it caused meant she could no longer sleep while lying down. She slept half-sitting up in bed. Not only did she have severe headaches, but she also vomited from time to time.

Nicolette tells Annelotte’s story to warn people and make them alert: