“For three months, I didn’t see people’s faces,” says Paul Thorn. “When I was in isolation everybody I saw was in a mask.”
There are masks all around now, on the street, in the parks — symbols of contamination that Thorn, 49, thought he could confine to sectioned-off memories. “It has brought up stuff for me, thinking about my time in the room.”
As he talks to BuzzFeed News over the course of a morning, this is how he always refers to it: the room.
Thorn’s 12-week isolation was not at home but in a London hospital in 1995, a different time and a different infectious disease — tuberculosis — but a situation similar to what many are just entering. He wants to describe his experiences now to help people in isolation and to offer practical and psychological advice gleaned from the hardest lessons of his life: how to cope when human connection is siphoned off. How to survive a vacuum.
It took nearly a quarter of a century for Thorn to be able to revisit that time. He’s written a book, Diary of a Modern Consumptive, chronicling the three months in that room. And last week he began a podcast, COVID-19: Surviving Isolation, in part from concern about what the world is yet to face.
“We’re looking at the coronavirus from a physical, public health perspective,” he says, “but there is an emotional and psychological impact to isolation that’s not being addressed. We’re cooking up a shedload of problems.”
He knows this from experience: “Being in isolation and getting stuck in your own head is like being in a very dangerous neighbourhood at the wrong time of night. You don’t want to be there alone.”
As well as entire populations around the world being in lockdown, with hundreds of millions only being allowed to leave their homes for designated reasons, many, including the 1.5 million Britons now being “shielded” from COVID-19, cannot leave at all. Such house arrest may be manageable for people cared for by loved ones, but for those who live alone, a starker picture awaits.
Thorn’s isolation was particularly extreme because of the type of tuberculosis he had — multidrug-resistant. The bacteria causing MDR TB cannot be treated by at least two of the most potent antibiotics that usually work. It meant clinical isolation in a negative-pressure room. Every year, 1.5 million people die from TB around the world. Eighty per cent of people with MDR TB die. But there was even less hope for Thorn. He contracted it after being diagnosed with HIV at a time when there was no effective treatment.
“I was told there was a 95% probability I was going to die,” he says. He was 24. The isolation was enforced on the grounds of public health. Some call this quarantine, but Thorn detests this word. “We quarantine dogs,” he says loudly, almost concealing his anger. “We isolate people.”
As he returns to that time, and the memories of life inside the room, the reasons for him flinching at this word gradually begin to surface.
Thorn lives by the sea now — on the south coast of England— and looks out at the beach through the window of his flat as he takes himself back to that summer of 1995. It was only five years since he had been diagnosed with HIV, aged 19. By 24, after months of worsening health, he lay on an AIDS ward at the Chelsea and Westminster Hospital in west London.
It was here he contracted TB, he says, due to a clinical error in which a particular test was performed on a patient believed to have TB, on the open ward, sparking an outbreak. Seven others caught it.
His doctor rang on July 27 to deliver the news: the bacteria (acid-fast bacilli) found in MDR TB had been grown from a sample he had given. He had to go to hospital immediately. He had no family, only his boyfriend at the time. (In his book, he writes, “on hearing I was HIV-positive, my father, believing that being gay was a choice, told me that I’d made my bed and now I must lie in it.”)
More tests followed before he was discharged and then, a few weeks later, ordered back before the diagnosis was confirmed: multidrug-resistant TB. Another communicable disease to build on the outcast status he had felt since adolescence. “I’d already got used to being stigmatised,” he says.
Thorn was ordered into isolation at the nearby St. Mary's hospital, not for his protection but for others’. The negative-pressure isolation was to keep the infection from escaping. It had its own bathroom and a shower that dripped often tepid water. There he lay in the blank, off-white chamber — or, as he puts it, “white with a hint of institution” — sweating into his sheets from a fever that pulled night into day. There was no internet or smartphones — only the ceiling, the walls, the journal he kept, a television, and the ticktock of a clock.
“After a while I couldn’t watch TV because it was too busy,” he says. “The visual stimulation made me very tired.”
Little has changed in clinical settings, he says. “You will find that an isolation room today is pretty much the same.”
He had to fight to get a phone — a landline — installed. And he was only permitted five people who could visit him, in order to enable "contact tracing" (the process of searching those who may have contracted it through close proximity) — all of whom he had to name on a list, and all of whom, like all the nurses and doctors, had to wear a mask.
He tries to explain the accumulating effect of the masks. “If I was smiling or angry or being a bit sarcastic, you would have a much better understanding of what I was saying to you because you would get facial communication,” he says. “We read a lot into expressions. Now, when people came into my room all I ever saw were their eyes.”
As the clinicians entered, performing test after test, the young man with the terrible condition became a medical curiosity. “People saw me as no more than a disease when they walked in. They saw me as a case. It was completely dehumanising.”
He felt the instinct of those who entered. “It’s a natural reaction to recoil from anything that is dangerous,” he says. “Most people wanted to be in and out of that room as quickly as possible.”
It wasn’t only the near certainty of death that taunted him but what life there might mean. “I was told if I did survive it was highly likely I would never be able to leave the room,” he says. “That I’d be in there until I was noninfectious, which may be never. I thought it was quite possible I may have to spend the rest of my life there, be it short or be it long. I would flip between hope and despair.”
Thorn has only one photo from that time, which he still cannot look at. He is gaunt, with coat-hanger shoulders, fingers interlocked, and an elbow resting on the window. Through it looms the only glimpse of the outside world available to him: a brick wall, several stories up. His stance is awkward, but it is his eyes that grip you — not deadened but dimmed; shrunk to fit his one-room world. The eyes of a hostage.
Both doctors and nurses told him he had no choice but to be there, he says. “Once you’re deemed a risk to public health, there’s already laws in place. They made it quite clear that they could invoke them to make sure I did stay. So the door was not locked, but it was always threatened if you do not comply.”
A high temperature and low stimulation unpicked his sense of time, so that fever dream and daylight reality enmeshed. There was something else, though, that didn’t exactly help.
“The ticking of the clock eventually drove me round the bend,” he says. “So I ripped it off the wall and smashed it.’”
But it is here that his experience began to pivot — and which leads him to the principles others can use to cope with isolation.
As well as being dehumanising, the enforced isolation was infantilising, Thorn says. “I felt like a naughty boy, like I was being punished. So I started behaving like one. I was incredibly rude to people. I smoked in there. And I wrote on the walls.”
It wasn’t words, though. He got an indelible marker and started a tally on the wall of each day he was in there to count the days and keep track of time. “Like Robinson Crusoe,” he says. “The sister [nurse] came in and said, ‘You can’t do that!’ And my answer was ‘What are you going to do? Lock me up?’”
The whole point of his behaviour, he now understands, was about control — something that had been removed, undermining his dignity and sense of self. “It wasn’t because I wanted to be a pain but because I wanted control over my environment and what was happening to me.” In this lurks parallels to today. “It’s the same as people going out and buying dozens of toilet rolls — they feel as if they are in some kind of control,” he says. The word resonates right through pandemics, he says. “We talk about ‘infection control’, ‘controlling the spread’. When you’re in isolation, there is a feeling of not being in control because all of a sudden it’s become very paternalistic.”
So, he says, “I did what I had to do to get through." That meant grasping the reins even with the smallest of opportunities available in that room, a control that can be exercised now to help people through. Even his door he policed. “People would just walk in. I would be like, ‘No, this is my space. Knock before you enter.’ It was a very firm rule I had. It reminds people that they’re coming into your space.”
He advocates for structure, which he imposed as much as he could. “Establish a routine,” he says. “It got to the point where I didn’t know what time of day it was. So my routine in isolation was: open my blinds during the day, close at night.” Although he stopped being able to watch television because he was so unstimulated, he recommends, if you are able, tuning in regularly for particular shows. “Watch scheduled programmes. These structure your day. So you don’t lose track of things.” As much as possible, he says, “Maintain normality. Get up, have a shower, get dressed, don’t sit in your pyjamas all day. And do one little job a day, even if it’s just cleaning out a drawer. That helps with a feeling of achievement and having some kind of control over something.”
Writing proved invaluable. “My diary became very important,” he says, often chronicling what was happening every day to at least eject the thoughts from his head to keep him from spiralling. When asked what people who are now trying to cope with isolation should guard against, he replies, “Projection. Projecting into the future — what might happen — rather than the moment now. Spending too much time in your head.”
He moved around as much as possible, arranging for an exercise bike to be brought in, and pacing the room just to keep active. This was in part through fear of muscle wasting, but the rhythms involved seemed to help.
But he missed touch. “That mattered,” he says quietly. “Not everything is resolvable.” Compassion from one particular nurse made it bearable, however. “Her name was Gini Williams. She used to spend a lot of time in my room talking to me. I enjoyed those chats very much because she spoke to me as a person, sitting on my bed and taking the time.”
After three months, the mere 5% chance that Thorn had of surviving became a reality. The treatment was working, bringing the infection under control and enabling him to be discharged. Another three years of treatment at home followed, but he had escaped the isolation unit, and escaped death.
What he had not prepared himself for was the outside world. When he entered the hospital it was in the glare of summer heat. Three months later, the British autumn was manifest all around. “The leaves were coming off the trees,” he says. “There was frost on the ground. I didn’t see the seasons change.” And he hadn’t seen anything but the drab room and the brick wall outside. “When I came out one of the first things I saw was a big red London bus, and it blew me away.”
Surviving the fear, the fevers, and the isolation changed him. “The man who went into the room is not the man who came out,” he says. “He was stronger, more assertive, a bit gobbier. I learnt how to say no.”
At the time he could not compute what it all meant, but he was aware of changes to his behaviour. He shaved his head and got rid of his piercings and tattoos. “It was about reclaiming myself and my body,” he says. He wore different clothes. “I looked like a complete thug.” It was an armour, he says. “It’s taken many years to sort out the impact it had on me.”
There was no therapy offered to him, so he had to find it and pay for it himself. He offers a warning for what is happening now. Treatment and isolation “becomes all about stopping the infection. Sometimes they do that at any cost. It’s the individual who carries that burden for the wider public good.”
Many times over the years he attempted to convert his diary into his book but could not. It was too much. “For a long time it felt like my present; I would be back in that room. Now I look back on it retrospectively. It feels historical.” Certain visual memories can jab at him still, however, like the colour of walls.
“I’m very twitchy around magnolia,” he says, laughing. Perhaps counterintuitively, being alone can offer comfort to him now. “I find safety in it and I choose to isolate sometimes. My friends know that’s normal for me.”
Overall, he realised how resilient he was. As he talks about the coronavirus pandemic, it is with a calm, level quality. “If I end up getting it and I end up in an isolation room again, I’ll be able to say, ‘It’s alright. I know the form. I know what I’m doing.’ I’m not going to live in fear again. I spent all of my youth fearing death. I won’t do it again. My focus will be on keeping myself in the best possible condition so if I do get this then I am physically able to deal with it.” Pandemics, he says, “bring out the best and the worst in us.”
Today, as well as writing and broadcasting, Thorn advocates for people living with tuberculosis across the world as the head of secretariat for TBpeople, a global community for those affected by the condition.
Later this year, he will turn 50. He's beaten the odds. “I thought my life was over at 24. I’ve had another lifetime again.” Although he can’t face seeing the photo of himself from 1995, “I look back on him kindly. He was very frightened.” He is convinced that however much fear and isolation now pervades the planet, it is not insurmountable. “We can deal with it,” he says. Thorn only hopes that the support will be in place for people once the storm passes — aware how much the right help can heal.
“I’m happier now,” he says, “than I’ve been for many, many years.”