From Harvard back to elementary school

As part of my Double bachelor in Economics and Philosophy of Economics I joined the Visiting Student Undergraduate Program at Harvard University. On the day my friends and I were getting ready to go to Mexico to celebrate spring break, I wasn’t feeling well at all. I considered my options, took a painkiller and hoped I would be good to go. When we arrived in Mexico, my friend Kevin felt I was acting weird and figured I was dehydrated. He advised me to take a nap and went out to buy some water. When he received a text from me in the store to tell him I was at the Quad, a well-known building at Harvard, Kevin knew something was seriously wrong. He rushed back, only to find that I had left the apartment we had rented. Eventually, he found me on the street, dressed in nothing but jeans and socks. Kevin saved my life by taking decisive action, which resulted in me being admitted to hospital in Mexico. 

Memory loss

The only thing I can remember is waking up in a hospital in San Diego where I had been taken while unconscious. When I came round, there were five people in the room. I was asked to identify my mum, but I had no clue; my memory had been wiped completely due to an inflammation of the brain, called Encephalitis. Everything I had learned in the twenty one years since I was born had vanished: I didn’t know my name and had no concept of the most basic things everybody seems to take for granted. 

What followed was a fight to stay alive. The standard treatment consists of a drug called Acyclovir, which is to be taken for three weeks and only then will it become clear whether the inflammation of the brain has gone or not. In my case it hadn’t. The doctors were at a loss. They went out on a limb by trying an experimental treatment that had only been given to rats until then. Thankfully it worked for me as well. 

There is still no consensus on best practice with regard to the follow up treatment of Encephalitis. The nightmare that followed upon my return to the Netherlands is a good example. In line with Dutch medical protocols, I was told there was no reason to continue the intravenous immunoglobulin (IVIG), treatment of choice for patients with antibody deficiencies. However, my immune system had apparently run riot and as a result another inflammation of my brain occurred. The US doctors now say they are almost certain this would not have happened if I had remained on IVIG. To overcome this second inflammation, I needed a massive amount of Prednisone. Normally, the maximum daily dose is 80 mg, but I received 1200 mg, which made me gain 50 kilos. The medication also caused severe depression. I have come very close to taking my own life. This is something I want to share so others who may feel suicidal see that it is possible to reach a better place. Ending my life would have reduced the chance of a positive outcome to zero. It was this realisation that made me decide that whatever small chance I had to overcome my depression was worth fighting for.

Back to primary school

After being an ambassador for the bachelor Economics and Philosophy who was doing two studies at Harvard, I had to return to primary school. With incredible patience my family, friends and teachers helped me to relearn everything beyond the basics. Although I had maintained my languages, all connotations associated with words had disappeared. When my mother would ask me how I had slept, I would answer “on my back”. Another less innocent example was my return to The States where the immigration officer at the airport enquired if I had packed my own bag. The answer “no” led to me being escorted by some serious-looking men to a little room where it took a whole lot of explaining to get me on my way.

We may laugh about this now, but I have come a long way. It took about two years to relearn enough to enable me to finish my studies. I still don’t have the implicit kind of reasoning that most of us have probably adopted unconsciously during their formative years. This became apparent when I went to an inspection of an exam I had failed. Without knowing my story, the professor concluded that it was clear I knew exactly what the subject was all about; I just didn’t know how to communicate it. To my relief, this led to a better grade.

Who am I?

I am now able to consider my memory loss as a gift. In a way, I have had to reinvent myself. It is comparable to the puzzle about the ship of Theseus that philosophers like to discuss. Theseus, a legendary Greek hero, owned a ship that had a rotten plank, which had to be replaced. When more and more new planks were needed, this prompted the question whether this was still the same ship or a new one. According to my friends, the boat is still the same in my case, but the captain has changed direction. The new Jur is the result of deliberate choices. A friend told me: “You are the old Jur’s sympathetic twin, the one without the rough edges who was already there in the background.”

My bachelor thesis deals with one of the most existential questions in philosophy: “Who am I?” John Locke says that identity is based on consciousness and memory. So what does that mean for me? Is there a real me? If John Locke is right then I am creating the real me by making memories. They range from simple things such as watching films with my siblings to more profound ones. During my recovery my parents have often mentioned the family holidays we used to take on the island of Vlieland. Recently, I was able to surprise them by showing up when my mum had agreed to go horse riding with her friends. I told her that we would go to a place that was even better for riding so we drove to the province of Friesland where we were joined by my father for lunch. When the waitress came with the bill she said: “Here are your tickets, Jur.” At first my parents were baffled by the fact that she knew my name, but then they realised that the tickets were for the ferry to Vlieland. That was my way of saying thank you for all their support.

The ItsME foundation

I am also very grateful to the medical teams that treated me. There is still a lot we don’t know about this condition, but scientists lack enough funding for further research, which is astounding because every year 2.8 million people contract Meningitis of which 303,000 die. Encephalitis occurs in 6.5 million people every year and for 77,300 of them the disease is fatal. It is unknown what makes people susceptible to infection and best practice varies across the globe. I would like to play my part in raising enough money for groundbreaking research. That’s where the ItsME Foundation comes in. We hope companies are willing to become Friends withME and make an annual donation. In addition, we organise events such as Walk withME, a Corona proof half marathon where 36 sponsored runners (including myself) recently raised 2,300 euro. Some of these research projects require budgets of over 100,000 euro so we still have a long way to go. It would be great if others can also organise (international) fundraising events for us because the power of we is stronger than the power of me. 

The future

My advice for fellow patients is to focus on the future. There doesn’t need to be a way back, there is a road ahead. The old Jur has troubled me by trying to make me go backwards, but the new Jur has taken a different direction. He is living independently, has a girlfriend, runs every day and is about to finish his Double bachelor Economics and Philosophy. He is planning to continue his studies with a Master in Politics, Philosophy and Economics. The old Jur aspired to a career in banking; the new one is going to make the world a better place.

Meningitis and Encephalitis (ME)