How my 22-day coma saved my mental health
It began in the spring of 2008 at an academic conference in Ireland. I was lonely, and the town where I was staying was dismal and it rained. On the third day a fierce headache tightened across my temples until I had to go back to my hotel room and lie down. By the evening it had faded but I was exhausted and went to bed early. The next morning I woke at five, nauseous, with an odd stiffness in my hands. I took paracetamol, which seemed to help a little, struggled through the final conference session and then flew back to London.
The next day I still didn’t feel well. My hands were so stiff I couldn’t hold a pen, and I phoned in sick to work. I had a hot bath and when I got out, the parts of my body that had been in the water were covered in raised, red welts, as big as the palm of my hand. The welts went down but over the next few days I didn’t feel any better. I slept badly, my body aching all over. The nausea was continuous, and the only things I could bring myself to eat were bananas, a half at a time. When Ellie, my wife, got home from work, she found the uneaten halves around the flat.
Over the next two weeks, the symptoms came and went. For a day or two my appetite returned, I had more energy and I began to think about going back to work; then the symptoms came back. It was a bad time to be ill. The day before I went to Ireland we had moved into a rented flat near the house we had bought in south London. The house was a wreck and builders were gutting and redecorating it before we moved in. The rented place was small and dark and cluttered with our moving boxes. Our daughter, then just over a year old, was underweight and not sleeping.
I began to worry that I would not recover from whatever this illness was. My thoughts circled continually around an image of myself as feeble, bedridden, unable to grasp on to the swirling responsibilities of my life – parenthood, work, moving house. At the end of my third week off work I was lying on the sofa in the middle of the night, unable to sleep, when these fears gripped me completely, apocalyptically. Looking back, I think of this as the moment when the true nature of what was happening to me revealed itself. I knew, suddenly, that I was very unwell, but not in the way I had supposed. I woke Ellie and told her I was losing my mind.
She took me to the doctor’s. I shook and wept while she explained what had been happening. The doctor diagnosed me with acute anxiety. She gave me a prescription for a week’s worth of sleeping pills and for citalopram, an antidepressant that, she said, would probably begin to ease the anxiety after three or four weeks. I couldn’t imagine how I would cope until then. It seemed intolerable to go on feeling this way for even a few more hours. ‘Isn’t there something that can help me now?’ I said. She shook her head. ‘I’m afraid not.’
It is impossible, I think, to properly convey what this kind of anxiety feels like to anyone who has not experienced it. The best way I can put it is that during that time it was as if I had forgotten how to be. By this I mean that every passing moment was unbearably intense and distressing. I felt that some internal switch had been flicked or shorted, leaving my body and mind in a state of unrelenting and unsolvable emergency.
The sleeping pills knocked me out for a few hours every night but I woke up at four or five every morning, exhausted, with the anxiety at full pitch the instant I became aware of myself. Even the smallest action, making a cup of tea or cleaning my teeth, was fraught with difficulty. I could not look after my daughter but I couldn’t bear to be alone either, so on the days when Ellie had to go to work she dropped her off at my parents-in-law, and other people were timetabled to come over to be with me. My brother came; other friends came. When I was very bad I stayed in bed and asked my visitors to sit or lie next to me.
Only later did I understand how alarming it must have been, how uncomfortable to see how utterly changed I was, how awkward for them to sit in my stuffy sick room while I cried and apologised for the way I was, how much one particular friend, who had his own worries, had wanted to get away.
My anxiety cycled relentlessly through the same themes: that I would be sick for years; that I would lose my job; that I would never have the clarity of mind to write again; that I would never be able to look after my daughter or have another child; that Ellie would leave me or send me away; that my incurable anxiety would cause all these things to happen. At other times the anxiety detached itself from these specifics entirely and simply became the thing itself. This was anxiety in its purest, most concentrated form, an abstraction with almost no relation to the world around me, as rampant and absolute when I looked out of the window and watched a boy kicking a ball as it was each time I phoned work to say I would not be coming in.
I hung on desperately to the hope that the citalopram would work. Each day I took the drug was one day closer to the three or four weeks when this feeling might begin to be relieved. I was terrified, however, of what else the tablets might do to me and this became a toxic new strand to my anxiety. The doctor had said the drug could make me feel worse before I felt better. Google searches confirmed this and much more. There were infinite numbers of forums where anxious, depressed people reported violent physical side effects, psychotic episodes and suicide attempts as a result of taking citalopram.
I spoke to my mother several times a day. Poor mental health – depression and anxiety – had dogged my parents’ lives. I had known and witnessed much of this but at 35 I thought I had dodged that bullet. Now that did not seem to be the case. When my mother came to visit, she lay on the bed with me, put her arms around me and held my hand. She talked to me constantly, reassuring me, reminding me of things from my childhood. She talked about a family holiday when she and I had walked around Ullswater in the Lake District and my father and brother had rowed across the lake to meet us. The weather was beautiful and my brother and I were trying to persuade our parents to get a dog. Later, we met my grandparents for tea. ‘That was a happy day,’ she said to me, over and over again, like a mantra, an incantation. ‘That was a happy day.’
The citalopram did not work but, seeing the state I was in, my friend Chris told me about Ativan, a benzodiazepine tranquilliser. The day he came round I was in a wretched state. I had not slept and was so exhausted that I found it difficult to move. Chris had been prescribed Ativan himself for anxiety. He was a good deal older and had taken it for decades. He said it would help me rest but I was reluctant. I felt I was taking too many pills already – paracetamol, sleeping pills, citalopram. In the end, my desperation outweighed my fear. I sat up in bed and Chris broke the pill in two and gave me half.
After 30 minutes I felt no different, so I took the other half.
Thirty minutes later I got out of bed and went into the kitchen. My physical symptoms had evaporated entirely. I made myself a sandwich and ate it sitting at the kitchen table with Chris. The stiffness in my hands had faded away. I had strength and energy. I felt mellow, but not dozy – alert, clear-headed, my thoughts no longer running into and climbing on top of each other. The feeling lasted for the rest of the afternoon and evening. It was miraculous. When Ellie returned with my daughter I played with her in the garden. Later on, I ate another meal which Ellie made and we watched TV together. Chris left me with a strip of pills, 10 in total. ‘Make them last,’ he said, ‘it’s not an endless supply.’
The GP did not approve of this and warned me off, but the pills Chris continued to provide gave me enormous relief in the worst of my anxiety. Gradually I got back on my feet and in late 2011 our second child, a boy, was born. I was terrified – I had not coped well the first time around – but he was an easy-going baby, healthy, a good sleeper. My anxiety seemed to be under control. I had started writing again and one story was shortlisted for a prize which came with a substantial amount of money. The ceremony was at an Oxford college, but a few days before I began to feel unwell. It seemed like a nasty flu and I lay in bed taking aspirin and paracetamol, barely able to eat, trying to keep my fluids up. We cancelled the trip to Oxford.
The prize aside, I had picked another bad time to be ill. Our son was only six months old and our daughter was in her first year of school. Over the past few years I had been making a habit of not being much use, of dramatising my health. It felt like part of the usual pattern and Ellie was frustrated. But on the seventh night it was so bad that I asked her to call an ambulance.
In A&E I asked the doctor if I was going to be OK. ‘You’re in the right place,’ he said.
I was moved to a bed in intensive care and an oxygen mask was strapped over my mouth and nose. They put me on fluid, painkiller and antibiotic drips, and took blood and sputum samples. An X-ray showed that both my lungs were black with infection and the tests confirmed the diagnosis of bacterial pneumonia. My lungs were failing and my blood was starved of oxygen. On my fourth day in hospital I was put into a medically induced coma but the antibiotics did not work and my condition did not stabilise. I was diagnosed with severe sepsis and then, a few days later, acute respiratory distress syndrome (ARDS), the lungs’ extreme reaction to an infection (a condition that is among the main issues with severe Covid). The alveoli become inflamed, then collapse, the lungs harden and the oxygen saturation in the blood drops rapidly. At the time I was ill, ARDS had a mortality rate close to 50 per cent. The literature says: ‘as loss of aeration progresses, the end tidal volume grows to a level incompatible with life’.
I was kept in the coma for 22 days.
A breathing tube down my throat pumped 100 per cent oxygen into my lungs. An intravenous line in my neck delivered up to eight different drugs from bags that hung from metal stands next to the bed. There was a feeding tube up my nose and down into my stomach, and saline and electrolyte drips into my arms. Every 30 minutes another line took blood out of my arm to be sent away for testing. I had a catheter in my penis, another in my anus, five sticky pads on my chest to monitor my heart, and a clip, like a clothes peg, on my finger that shone an infrared light through my blood to measure the oxygen saturation.
After 10 days the oxygen level in my blood had still not stabilised and I was moved to an oscillator, a machine that provided a different, more aggressive form of ventilation. The oscillator holds the brittle lungs open while air is pumped in and out, and the whole body vibrates with the force of it. A cooling blanket was laid over me to keep my raging temperature down. I was bloated with fluid, my body so swollen I was almost unrecognisable. These were, I was told later, the worst, the most dangerous days.
There were family summits about what would happen after my death. Ellie checked the mortgage cover, my life insurance and my death-in-service payout from work. They brought my five-year-old daughter in to see me. ‘If there is a loss,’ the consultant had said, ‘research shows that children do better if they have had a chance to see the sick parent.’ When she came in, my daughter patted the cooling blanket tentatively and called me ‘pipe-man’. She was not visibly upset, but the next day, at school, she drew a picture and wrote underneath, ‘I am sad, Mummy.’
One consultant told Ellie and my brother that I was ‘the sickest man in London, and maybe the whole country’. It was not, everyone agreed, a helpful thing to say – baseless and melodramatic. But when, instead of dying, I got better, I liked the way it made me sound notorious – the Sickest Man in London – and I held on to it as a badge of honour.
After 17 days in a coma, things began to change. My oxygen levels stabilised, the infection retreated and I was moved back to a normal ventilator. On the 23rd day they gave me a tracheostomy so that the breathing tube could be passed directly through my throat rather than my mouth. Then they began to reduce the sedation. I am told that at first, when I woke up, I seemed happy and very high, but within a few hours I had become confused, paranoid. I asked my nurse, John, to show me his ID. I tried to rip out the lines on my arms. I begged to see or speak to Ellie and demanded to be moved to another hospital where the staff were not trying to kill me.
Intensive care unit delirium is caused by illness, medication, the withdrawal of medication, sleep deprivation, the distress of people in the other beds, the starkly lit, noisy, relentless and alien environment of the ward itself, or all of these things together. Massive doses of diamorphine had kept me in the coma and now I was coming off it.
The psychosis passed after a few days and I began to recover. After a week or two I started sitting for a few minutes each day in the chair beside my bed. Soon after that the tracheostomy was removed and I started eating small amounts of food and using a frame to take a few steps along the ward.
I was doing well – everyone said so. Each morning the consultants told me how much better I looked, what great progress I was making. Nurses I didn’t know but who seemed to know me called out, ‘Looking good today!’ I smiled and said yes, I was feeling pretty good; I had come back from the dead, the void, the abyss. And now I was the longest-serving patient on the ward, an intensive care veteran. I was enjoying myself. I had a kind of status.
Before all this my mother-in-law had called me the Creaking Door because, she said, ‘there is always something a little bit wrong with you but you will probably go on for ever’. I liked this because it was vivid and because it attributed to me a kind of strength and resolve, like a Native American chief – Sitting Bull, Standing Bear, Crazy Horse, Creaking Door. After seven weeks I was moved into a general ward. Two weeks later I was discharged altogether.
The experience of intensive care often leaves long-term psychological scars, and is sometimes diagnosed as post-traumatic stress disorder. Ellie and my brother were aware of this possibility. They joked darkly to each other that given my history and my marathon stay, as soon as I was well enough to be discharged they would escort me straight across the road to the Maudsley psychiatric hospital. This was not unreasonable. What might such a dramatic shock to my physical system do to my shaky mental wellbeing?
I did not end up in the Maudsley, or anywhere else. In the immediate aftermath of being in hospital, in fact, I was on a high. Death gives meaning to life, no doubt, and life now felt deeply meaningful – how could it not? At the follow-up appointment the consultant told me they had not expected me to make it, that my recovery was miraculous. After a few months of rest and physiotherapy I was back to full strength and had returned to work. This confirmed the narrative of remarkable resilience, I had defied the odds. It was more than full health, even. One friend suggested I was 10 per cent better than I was before I was ill, meaning it in the most general sense, a better person. He was not entirely serious but there was some truth in it. I was a little bit reborn. Grateful for the kindness and care I had received, grateful to be alive. In the few months after getting out of hospital I fixed the central heating, took the U-bend off a sink and unblocked it, and changed a flat tyre on the car, all tasks previously beyond me. Ellie suggested that the doctors and nurses had rewired me when I was in the coma.
The high of recovery passed gradually but my overall mental health remained stable. From time to time I had brief but intense flashbacks of intensive care; a smell or an image or just a mood, some vivid sensory or emotional flavour that couldn’t be translated into language. They were not traumatic in the way you might imagine.
For me, this experience of profound physical illness was oddly therapeutic. The knowledge of what my body had been able to survive was potent, I think, a weapon against the nagging anxieties of ill health that I had lived with for a long time: the Creaking Door. Perhaps it is a mistake to generalise, but the way we experience and make sense of physical illness is different from that of psychological distress, even if the distinctions are often blurred. It seemed possible to think of the illness that put me in intensive care as something separate from me. After all, I had caught it; the bacteria that caused the pneumonia had come from somewhere else.
It did not matter that by most measures my physical illness had been far more serious than my anxiety, that it had very nearly killed me. We have ways of talking about it that make it understandable, a vocabulary of alveoli and inflammation and oxygen saturation that described in hard scientific terms what was happening to my body and treatments that could eradicate it. I had sometimes conceived of anxiety as an invader, too, but I had not caught it from somewhere else, at least not in any measurable way. It had come from within and I had to think of myself differently after my breakdown. This is something to do with the self, how we divide mind and body, but while an infection can be cured, mental health is only ever conditional, subject to reversal.
Nevertheless, my own experience of mental illness has been in a minor key. I could not know this at the time but my breakdown was not the beginning of a long trek into the further, more chaotic realms of psychological distress; I never harmed anyone or tried to harm myself. I did not end up addicted to tranquillisers. It troubled but did not destroy my personal or professional life. Instead I got better, slowly. With the support of family, friends, employers and the illicit pills my friend gave me, I got through it. In the long term it has not limited me, or not a great deal. It was the worst, most defining experience of my life by far, yet it could have been far worse. Perhaps it would be reasonable to say I have dodged that bullet.
Extracted from The Bullet: A Memoir, by Tom Lee, out on May 2 (Granta, ￡14.99); pre-order from Telegraph Books