Are you still not going out?

Friends and family think I’m at best over-cautious, or at worst ridiculous. They don’t say it to me directly, but I sense it.

Most people I know seem to have returned to some kind of normality. Getting together indoors, going to pubs and restaurants, eating out, sharing trips in cars. These things crept back in gradually. People are fed up with keeping away from others and so badly want it all to be over. We stopped hearing about the people catching it, going to hospital with it, dying from it. It feels like the risks abated, and behaviour changed day by day.

Because I am not joining in, and continue to avoid any unnecessary face-to-face contact, I’m now very much an outlier. “Are you still not going out, Andrew?” “Life has to go on.”

I question my attitude all the time. I get drawn in. Perhaps I am being over-cautious, and need to get back to being social again. I’m certainly missing human contact and having any kind of a social life. But then I read a horror story about the long-term problems that some COVID survivors are trying to cope with, and it just reinforces my desire to keep away from everyone. It’s as if there is one version of events out there in the real world, and then people I know are gaslighting me.

COVID-19 has not been with us for very long, and every day there seems to be new stories about possible impacts on the human body, or new developments such as being able to catch the virus more than once. Even if the long-term impacts are mild, I am happy to make sacrifices to avoid them. From the New York Times:

“In meetings, “I can’t find words,” said Mr. Reagan, who has now taken a leave. “I feel like I sound like an idiot.””

I remember one December where I had to run a workshop after a big night out of festive drinking. My hangover manifested itself in that I was unable to string sentences together properly. Something had altered in my brain, albeit temporarily, and it was torture. As I spoke, it was as though I had a separate inner dialogue that was asking me “Where is this sentence going?”, and I didn’t know. The thought of being stuck like that permanently fills me with dread.

The film Awakenings (1990) with Robert De Niro and Robin Williams has always fascinated me. Based on a book by neurologist Oliver Sacks, it depicts people who had become victims of the encephalitis lethargica epidemic of the 1920s. From Wikipedia:

The disease attacks the brain, leaving some victims in a statue-like condition, speechless and motionless. Between 1915 and 1926, an epidemic of encephalitis lethargica spread around the world. Nearly five million people were affected, a third of whom died in the acute stages. Many of those who survived never returned to their pre-morbid vigour.

The book and/or the film draws a link between the influenza pandemic of 1918 and the subsequent encephalitis lethargica pandemic that followed. My understanding is that there is no irrefutable evidence that the first pandemic caused the second one, but this continues to be the subject of scientific debate.

Curious, I searched the web for “encephalitis lethargica” and “COVID” and found that (of course) I am not the only one to be thinking about this. Some examples:

US National Library of Medicine: From encephalitis lethargica to COVID-19: Is there another epidemic ahead?

The above characteristics can be indicative of the ability of coronaviruses to produce persistent neurological lesions. Acute COVID-19-related encephalitis, along with the potentially long-term worrying consequences of the disease, underscore the need for clinicians to pay attention to the suspected cases of encephalitis in this regard.

The Lancet:  COVID-19: can we learn from encephalitis lethargica?

We should take advantage of both historical and novel evidence. The prevalence of anosmia, combined with the neuroinvasive properties of coronaviruses, might support neuroinvasion by SARS-CoV-2. Whether the infection might trigger neurodegeneration, starting in the olfactory bulb, in predisposed patients is unknown. We should not underestimate the potential long-term neurological sequelae of this novel coronavirus.

NHS University College London Hospitals: Increase in delirium, rare brain inflammation and stroke linked to COVID-19

“We should be vigilant and look out for these complications in people who have had COVID-19. Whether we will see an epidemic on a large scale of brain damage linked to the pandemic – perhaps similar to the encephalitis lethargica outbreak in the 1920s and 1930s after the 1918 influenza pandemic – remains to be seen.”

The Conversation: How coronavirus affects the brain

Encephalitis and sleeping sickness had been linked to previous influenza outbreaks between the 1580s to 1890s. But the 20th-century epidemic of encephalitis lethargica started in 1915, before the influenza pandemic, and continued into the 1930s, so a direct link between the two has remained difficult to prove.

In those who died, postmortems revealed a pattern of inflammation in the seat of the brain (known as the brainstem). Some patients who had damage to areas of the brain involved in movement were locked in their bodies, unable to move for decades (post-encephalitic Parkinsonism), and were only “awakened” by treatment with L-Dopa (a chemical that naturally occurs in the body) by Oliver Sacks in the 1960s. It is too early to tell if we will see a similar outbreak associated with the COVID-19 pandemic, though early reports of encephalitis in COVID-19 have shown features similar to those in encephalitis lethargica.

The aftermath of this global event has many lessons for us now in the time of COVID-19. One, of course, is that we may see widespread brain damage following this viral pandemic.

I’m not sure when I’ll be at the stage where I feel comfortable visiting friends at their houses, sharing car journeys, or meeting up in pubs or restaurants. I doubt that there is a rigorous logical set of conditions that would need to be specifically met before I start doing those things again. I’ll know it when I feel it. Perhaps this stuff is just different for everyone based on their perception of risk versus their need to socialise to maintain a quality of life and good mental health. Perhaps part of it is that I am lucky to have a job that I can do from home so my need to venture out is minimal. Perhaps my interest in politics over the past few years has made me much more deeply distrustful of our government and their response to the pandemic than many other people. Eight months in, the novelty of being at home all the time has worn off, but I’m still ok to keep hunkering down for now.