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When forgetting means forgetting oneself

The legendary AC / DC guitarist, Malcolm Young, gave to the world a present for more than 40 years: the unique sounds of his guitar. His life orbited around music. However, he had to abandon the stage in 2014, when dementia caused the loss of short-term memory. Did Young stop being Young by the fact of not being able to remember people few minutes after talking to them? The most daring would answer yes, others will say that Malcolm continued to vibrate with each guitar chord until the last day, being that what had always defined him as a person.

What happened to Young is similar to what people who suffer from the unknown anti-LGI1 encephalitis experience. It is a disease of the family of autoimmune encephalitis by which, after the acute phase, many patients leave the hospital allegedly cured, but with slight memory losses and skills that somehow tell them that they are no longer the same as before. To change this reality, a group of researchers led by Dr. Josep Dalmau is studying the phenomenon thanks to the health research funds they received from Obra Social “la Caixa”. Albert Compte, a researcher at the August Pi i Sunyer Biomedical Research Institute of the Hospital Clínic in Barcelona, ​​works on this team. Today, he tells us about the life of people who lose their memory.

What are the symptoms of anti-LGI1 encephalitis?

In the acute phase, patients suffer epileptic seizures and are not able to build new memories. This makes them live only in the present. Everything is immediate, new and unexpected. The last memories are from weeks or months ago. I imagine that they feel a sense of continuous surprise and the inability to prevent what is going to happen, unless it is a very established and systematic routine. I think that only routine gives them peace of mind. When the treatment ends with these symptoms, after two months, they recover an important part of the memory and leave the hospital. But over a period of one or two years, many still have minor memory problems and loss of skills. This means that they cannot take control of their lives back, as they had before the illness.

What do you want to achieve with your research?

We want to monitor the people who live this process to understand why it happens and, thus, prevent future patients from going through these invalidating moments. Public health does not address it as a very serious problem because, functionally, they are valid people, but they are not completely well. Suddenly, they can say that they do not remember something that just happened.

How does this affect the patients’ day to day?

Managing their routine can exasperate them. Not remembering everything and losing some skills makes, for example, that some cannot continue their usual job or that their colleagues leave them aside. Others cannot succeed on the exams of their courses because they do not recall anything that they have studied. That provokes self-esteem problems and, therefore, they can even drop out of school. If it happened to me, I would have to quit my job!

And their affective relationships?

The book Brain on Fire by journalist Susannah Cahalan, who suffered an autoimmune encephalitis, tells how her partner stopped understanding her when she was discharged. He was not living the same as her, and he did not understand why she did not remember certain things, and saw inconsistencies. That ended up making him think she was scattered, that she was not paying attention to him. Once the disease was overcome, theoretically, the relationship broke…

Why do you think these disagreements occur?

Being apparently normal, their symptoms can create conflicts with other people. Since people, in general, feel empathy towards the one who is sick but not towards the one who does not show it, even if he is.

What do these people need?

Their families are usually the ones who struggle so that they do not leave their studies, work or relationships. They are also the ones who inform them of what happens during the acute phase, when they cannot retain any information. One of the methods is that, for example, the couple and the patient’s children write diaries of everything that happened. In this way, later the patient will be able to know what happened to his/her life while he/she was a person who lived without recalling anything.

The first time that an encephalitis of autoimmune origin was described was in 2007, by Dr. Josep Dalmau. But, in 2000, Christopher Nolan had already shown in the movie Memento a disease of similar characteristics. Could the director have anticipated what the medicine had not yet named?

In fact, similar cases had already occurred. There is the classic case of Henry Molaison. The tremendous number of epileptic seizures he suffered pushed him to undergo experimental surgery in 1953, to have his hippocampus removed, which is where the memories are codified. He lived for 20 years without being able to form new memories. Exactly the same problem that affects the protagonist of Memento. The difference of this character and Henry Molaison from the patients with encephalitis is that their disease was irreversible.

Let’s consider a dystopian future in which, suddenly, we all forget what we experienced after 10 minutes. How do you imagine the world would be?

There could be no justice (no one would remember anything or feel responsible for anything) or politics (a debate to negotiate or approximate positions would not make sense), and it is not easy to imagine a stable family structure either. Society would need to be based on a technology capable of maintaining a collective memory, therefore, control of this memory would be the basis of the power of this society. It would be an interesting idea for a novel!

Interview: Alba Losada
Photograph: Anna Pla-Narbonne

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