This story was first told by Marc on his Instagram profile and is now also available here on the website.

Hallucinations and Panic attacks

There is a reason why I haven’t published anything for more than one year now. In the beginning of July 2020, when we were still in Jinghong, China, I started to act a bit weird. In the evening of 6th July 2020, Grete could convince me to go out again for a walk. But I became very paranoid, and later that evening I had my first panic attacks. She tried to calm me down, which partially worked. We spent that night outside, sleeping on the street. I can only remember parts of that night. The following days, I was very confused, as my whole perception was off and I had hallucinations. I smelled things I’ve never smelled before, and I saw colors that I haven’t seen before. I got more and more confused and didn’t understand what was going on. I couldn’t walk completely properly anymore. Grete tried to get help, but somehow nobody understood (or wanted to understand) that we needed help. And as I was extremely paranoid, I didn’t let Grete use her phone to get in touch with our friend Colin who’s living in Jinghong. Luckily, after two very long and stressful days (especially for Grete), a Chinese guy realized that I wasn’t alright, and he asked us if he should call an ambulance.

We got into a first hospital where the doctors didn’t know what to do with me. I had some more panic attacks and hallucinations – for example I thought that I was drowning in this hospital room. On 9th July, I got transported to a mental health clinic in Jinghong. In this clinic, I started to “speak to god”. But nobody could really figure out, what I was talking about.

Living in my own world

At that time, I was already unable to stand on my own, that’s why I had to be in a wheelchair when i was not lying in the bed. Moreover, I couldn’t eat or drink on my own anymore. Our friend Colin could find some other expats that were willing to help me (and Grete). In China, they don’t really have nursing aides outside of the ICU. Therefore, the responsibility for everything from feeding, to drinking, to assistance getting from the bed to the bathroom, in and out of the wheelchair and taking oral medication mostly falls onto the family. To either arrange or to physically be there. As it got more and more clear that it was not (only) a mental health problem, I got transported to another hospital in the town of Pu’er nearby. There, we could have a private room with a private bathroom. Moreover, there was Dr Roy, a doctor who knew English.

While I was mostly lying in the bed, living in my own world, my sister and my parents found a way to get me and Grete back to Switzerland. But we had to expect that it would take about 10 more days before we could return to Europe.

The diagnosis at this time was “autoimmune limbic encephalitis” (ALE), “epilepsy” as well as “acute temporary psychiatric disorder”. Fortunately, I already got the treatment for ALE in China, which involved 480mg of Methylprednisolone (per day in the beginning) as well as intravenous immunoglobulin (IVIG). The treatment showed amazing results. Within two days, I started to improve a lot. I started asking Grete a lot about the last few days, especially what had happened and why I was in a hospital bed as I basically couldn’t remember anything from the last few days. I could also drink water and brush my teeth on my own again. I still was very nervous and confused, but apparently sometimes I could speak kind of normally with the people around me. I don’t remember these things anymore. Actually, I don’t have many memories of this time at all.

Returning back to Switzerland

Fortunately, I am a patron of Rega, a private, non-profit air rescue service from Switzerland that provides emergency medical assistance. Rega also provides a repatriation service for members who experience a medical emergency while abroad. The plan was that Rega would repatriate me (and Grete) to Switzerland and bring me to the Inselspital (the University Hospital of Berne), where the doctors wanted to run even more tests to find out what exactly was wrong with me.

On 21st July, the journey from Pu’er back to Berne started. First, we had to take a Chinese plane from Pu’er to Guangzhou as the Rega plane was only allowed to land in Guangzhou and not in Pu’er. From Guangzhou, the Rega plane took us to Zurich with a stopover in Novosibirsk. From Zurich, an ambulance car brought me to the Inselspital in Berne. I am very thankful that Rega helped Grete and me (as well as my family) by repatriating us from China to Switzerland! Also, for Grete it was the first time in weeks when she could finally (sort of) relax as the Rega team was taking good care of me – so she could enjoy the vegan Sushi that the crew brought for her! I am also extremely grateful for all the lovely humans that helped Grete and me during these very difficult days. Some of the helpers I can (partially) recognize on pictures, others look completely unfamiliar to me. Hopefully I’ll have the possibility to meet every single person of them again at some point in the future.

Intensive care unit at Inselspital

I arrived at the Inselspital (the University Hospital of Berne) on 22nd July and was brought to the intensive care unit where my parents could visit me. I can’t remember anything of that day, but apparently, I recognized my parents and asked them some (sometimes very weird) questions.

On 23rd July, Grete and my sister Andrea could visit me at the ICU. During that visit, I got moved to the intermediate care unit. Interestingly, the first thing I can remember from Switzerland is the moment when Grete and Andrea were allowed to come into the intermediate care unit as well – although I had been with them before for quite some time… I was very confused when I saw Grete and Andrea at the same time – because Grete was supposed to be travelling with me and Andrea was supposed to be in Switzerland, so how can it be that they are both in the same room at the same time? Slowly I started to understand that I had been repatriated by Rega and that I was at Inselspital. One of the first questions that I can remember asking my sister Andrea (who studied mathematics and physics as well) was the following: “Is time one or two dimensional?” 🤦‍♂️😂

At Inselspital, I was quite clear, and I could easily talk to my parents, Andrea, and Grete, but I still had some fear attacks for no obvious reasons from time to time. A diagnosis was still missing, but the doctors said it might be an autoimmune encephalitis (so basically my immune system started attacking my brain), which caused the psychosis. Fortunately, the diagnosis “epilepsy” (that was given in China as well) seemed to be wrong. The treatment with intravenous immunoglobulin (IVIG) was continued.

After all the tests were done and I had gotten as much IVIG as I needed to get, the doctors decided that I should be moved to a place with less stimuli and noise, as I was very sensitive to everything what was going on around me. On 24th July, I could leave Inselspital and I was brought to a psychiatry in Meiringen, a town relatively close to my hometown.

Starting to walk again

In the beginning, I had to stay in the locked-ward psychiatry, because I was self-endangering as I was still very confused and didn’t understand what was going on from time to time. I had to ask my parents a lot of questions. For example, if I killed a kid when I was younger (which I didn’t 🙄). I also still had some short fear attacks from time to time and some nightmares, and sometimes I wasn’t able to realize if it was just a nightmare or if it had really happened.

On 29th July, I could move to a normal room in the psychiatry (where I was allowed to leave the room on my own). That’s basically also the time where most of my memory starts again. Between the beginning (on 6th July) until the end of July, I can maybe remember about 10 different moments, but I can I remember a lot of the weird thoughts and fears (and most likely nightmares) I had during that time.

When I was in Meiringen, I started walking again. I couldn’t really walk straight in the beginning, but I could walk again! I made huge progress every day, and after a few days I could already walk a few hundred meters. In the beginning I had to use my hiking sticks, one week later I could walk without the help of the sticks, although I had to focus and I still had an unsteady walk, but clearly there was a huge progress. Moreover, it was possible again to have a normal conversation with me.

Recovering at home

On 6th August, I was allowed to go home for an afternoon for the first time but had to return to the psychiatry in the evening. On 8th August, I could go home to my parents and stay there for 23 hours, before I had to return to the psychiatry. At home, I could also have a video call with Colin (our friend from Jinghong), but interestingly, I couldn’t remember most things that he told me from my time in the clinics in China.

I had to spend one more night at the psychiatry before I was released. Thanks to the medicine I had gotten (IVIG) and I was still taking (prednisone), my brain inflammation was decreasing, and the symptoms of the psychosis were reduced. The following days and weeks, I had a few appointments with a psychiatrist. Fortunately, I made good progress as well and I didn’t have to continue taking the antipsychotic drugs for a long time. Once I completely stopped taking antipsychotic drugs, my whole mood and well-being increased a lot once more.

In the second half of August 2020, I was recovering very well at home. Little by little I started to understand what had happened and how extremely lucky I had been. I went walking daily. In the beginning only 30 minutes, later already up to 2.5 hours. I was listening to a lot of music and solved different riddles (like Bimaru). As I wasn’t supposed to be in front of the laptop, I had to kill my time, thus I started solving a jigsaw puzzle.

I was recovering extremely fast. But there was still a small setback. On the evening of 30th August, I realized that my left lower leg was swollen, and I had pain all the way up to the thigh. Long story short: The next morning, an ultrasound showed that I had a thrombosis in my left leg. It’s still not clear what caused the thrombosis. I assume that it was a combination of the medications I was taking as well as the several weeks before when I was mostly lying in a bed. But once more, I was lucky as the thrombosis didn’t cause a pulmonary embolism. As it is not clear yet what caused the thrombosis, I have been taking blood thinner and wearing a compression stocking since September 2020.

Apart from the thrombosis, my fast recovery continued. My brain seemed to work fine, and I could solve many riddles every day and I didn’t get as tired as I had gotten in the beginning at home.

In October 2020, I had to do a long test of my brain resilience. Fortunately, all the results were normal, and it looks like my brain just works again as it is supposed to. Thus, I am not unemployable like I was until I did that test. I started working as a private math tutor and in November 2020, I could start working as a (substitute) math teacher. Luckily, even the workload (of sometimes well over 100%) was no issue for me.

For me, it’s very impressive to see how it is when a brain stops working properly. I am extremely grateful that I recovered so fast and so well – it’s like a beautiful miracle! But as I have a memory loss from the worst 3 or 4 weeks (the time when it all started in China as well as the first week back in Switzerland), it’s also difficult for me to really understand what happened. I see all these pictures and videos of me, but I just can’t remember much of this time. This makes it even harder to grasp what all the people around me – especially Grete but also my parents and sister – went through.

Conslusion

Most likely, I had been suffering from an autoimmune encephalitis (which means that my immune system started attacking my brain). We don’t know what caused my immune system to start attacking my brain, and most likely we’ll never find out. I still had to get a treatment with intravenous immunoglobulin (IVIG) every month for the last year. The IVIG introduces antibodies from the plasma of healthy donors, which removes harmful antibodies and reduces inflammation. So, basically (as I understand) this treatment “resets” my immune system. On 2nd July 2021, I got my last IVIG (for now – maybe forever). In the coming months, the specialists will run many tests again and check everything. As we stopped the treatment with IVIG now, we will see if I can be without IVIG or if there will be a relapse. We will also check my left leg (because of the thrombosis), especially trying to figure out if I have a higher risk to get another one in the future.

Although there was most likely a lot of bad luck involved to get this rare disease in the first place, there was much more fortune in the whole outcome: For example, it didn’t happen in the wilderness (where we were between September and December 2019 and where we didn’t see humans for 75 consecutive days), I wasn’t alone, it happened in a town where we already knew some other people, I got the right treatment very quickly and most importantly it looks like my brain recovered completely.

I am very grateful that I am doing so well since many months now and I am extremely thankful that Grete as well as all the lovely helpers in China (as well as all the medical staff involved) were taking such good care of me, especially as I needed a lot of attention 24/7 before returning to Switzerland.

The drawing above, I made in the psychiatry in Meiringen in the beginning of August 2020 while I was recovering from my psychosis. Somehow, I was constantly thinking about my childhood. And as I liked to draw these kinds of circles as a kid, I decided to do the same.