The poet’s window

I am standing before a faded pink house with a plaque above its door. It is at the foot of the monumental Spanish Steps, which make their stately way down from the Trinità dei Monti church, towards a baroque fountain in the shape of a sunken ship. Barefoot selfies are being taken by tourists even in the chill of a mild winter evening in Rome. Fluorescent rave lights are thrown into the sky. The sun is setting and the throng of tourists begins a dance around the square’s designer shops that will whirl late into the night.

The house is quiet and dark, as if in slumber. In November 1820, almost 200 years ago, John Keats came here hoping vainly to recover from the tuberculosis that was eating into his lungs. And here he died the following February. The carefree chatter outside feels like an offence to his memory. So I return the following morning when the square is hung over with cloud and rain.

The sitting room of Keats-Shelley House is crowded with memorabilia but Keats’s bedroom, where he died in a wooden bed, is spartan. It is a calm, corner space with the bed at one end, a desk at the other, much as he left it. Along its walls now are display cabinets and pictures: Keats’s death-mask, paintings of his grave in Rome and a black-and-white portrait of the poet in bed, drawn by his friend, Joseph Severn, three months before his death. I have seen a larger version of the image at Keats’s English boarding house in Hampstead, where he lived in penury after caring for his brother, Tom.

I go to the writing desk beneath the window overlooking the spot where I had stood the night before. I see the slanting steps, the fountain, the tourists. Noise collects in the pit of the square and rises to the room clear and sharp – conversations can be followed with crystal clarity. So it must have been for Keats as he lay here hovering between life and death.

A guide book tells me that “until Keats became too ill to leave his bed, the view from his window was a constant distraction and delight”. Delight is surely not the only emotion he would have felt as he listened to the throb of life outside as his own drained away.

“I have an habitual feeling of my real life having past, and that I am leading a posthumous existence,” Keats wrote from this room in one of his final letters, on 30 November 1820. He had not married his fiancée, Fanny Brawne, or established himself as the great poet he was determined to become. Endymion had received devastating reviews in 1818 but he kept on, undeterred in a race against death.

The contemporary author and palliative care doctor, Kathryn Mannix, has written of those who have terminal illnesses entering into preparation mode. Some even ask for their passports for their end-of-life “journey”, she writes. Keats came to Rome with hopes of living but he must have known as he left London that he was never coming back. He had had two lung haemorrhages and coughed up arterial blood by then: “That drop of blood is my death-warrant,” he wrote.

But even in this certain knowledge, he wavered between despair and the hope of a miracle. “I want to compose without this fever. I hope I shall one day,” he wrote on 21 September 1819. But a few months earlier he had written to Brawne to say that he brooded over “the hour of my death”. He carried on bargaining with God – what greatness he could achieve if he were just given a few more years. “If God should spare me…”

God didn’t spare him. Keats died at the age of 25.

Rome is filled with dazzling images of Christ, Mary and the angels; God’s presence is everywhere. But God wasn’t in this little room when Keats was dying or if He was, He just watched.

It is all 19th-century literary history now and I wouldn’t be standing at this window if his illness and death did not have a new, personal meaning for me.

Fauzia, my sister, was two years older than me. She died three and a half years ago, at the age of 45, after shuttling in and out of intensive care between April and June 2016 with an illness that had made it hard for her to breathe.

On the day she died, no one knew what had killed her. We watched her medical team conducting tests, drawing up hypotheses and enlisting ever more doctors until the group became engorged with expertise but was no closer to a diagnosis.

As she lay sedated in her final days, her heart raced on the life-support machine as if she were running, trying to flee her unnameable fate in her sleep.

Fauzia had begun complaining of chest pains and heavy night sweats but X-rays had come back clear. Then her face swelled up. She was taken to A&E and tested for meningitis but those tests were also clear.

A few days later, she was seriously unwell again. This time, her chest X-rays showed inflammation. She was given steroids and appeared to get better so was discharged from the Royal Free, a leading research hospital in Hampstead, London. But she was back the following month, weaker than ever and now with slurred speech.

On the morning of Friday 10 June 2016, my mother got a phone call. Fauzia had had a brain haemorrhage in the early hours. By the time I reached her, the curtains were drawn around her bed. A young doctor told us what had happened: the haemorrhage had been catastrophic. Yet they still didn’t know what had caused it. I wondered if she were the first victim of a deadly new virus that lay on the outer reaches of medical science. In circumstances like these, the doctor said, his voice quivering, they kept the patient on a ventilator for 24 hours before pronouncing them dead.

The next day, I was the first to arrive. Fauzia had been moved from the open ward to a private room. A nurse told me to put on the kind of protective plastic clothing required to contain contagion. I did as I was told. I mentioned how her doctors still didn’t know what was wrong with Fauzia. He looked down at the medical notes and said, no, there was a diagnosis. “TB,” he said. “She died from tuberculosis.” Here was a diagnosis at last, coming a day after the TB had travelled up her spine and reached her brain.

So now we knew. But for days, weeks, months afterwards, I was numb with shock. I felt unable to smile or hold a conversation, or think of anything beyond Fauzia’s death. And I began to feel haunted; we had argued over the years and now I was filled with sadness, regret and guilt. I was tormented by comparisons between how my life had bloomed as hers had faded. She emerged in my dreams, never as the girl from our childhood but as the frail, enervated woman she had become in her last months. And I had some heart-stopping moments when I thought I saw her walking in front of me on the street and I would quicken my pace to catch up with her just as she disappeared around a corner.

I began to look back at the history of TB in Britain and realised that it had peaked between the 18th and 19th Centuries as farm workers migrated to the cities for work. In London alone, one out of seven people died from consumption at the beginning of the 18th Century and that grew to one in four by the dawn of the 19th. Poverty, squalor and the industrial revolution led to a further, faster spread of the disease, and it remained a fearsome killer until the BCG vaccination was developed in the early 20th Century, although that didn’t become widely accepted in Britain until after the Second World War.

While I vaguely knew most of this already, what I hadn’t realised was that the disease was not extinct in the West, but had made a deadly comeback in recent years. London had become the TB capital of Western Europe, and its return was down to the rise of poor housing, inadequate ventilation and overcrowding in deprived areas. A report found that TB cases in Britain had hit their highest levels for 15 years by 2018.

And when I looked at the Tuberculosis in London annual review by Public Health England in the year my sister died, I found that the highest rates of TB across Greater London were in the boroughs of Newham and Brent, which were comparable to TB rates in Rwanda and Guatemala; Fauzia had lived on the boundary of the latter borough, in Kilburn, for years.

The doctors discovered the TB from the lumbar punctures they had administered on Fauzia to examine her spinal fluid. They had found nothing of concern but they had not been looking for TB. When they tested the fluid after her haemorrhage it came back positive.

The disease had disseminated into several organs through her blood or lymphatic system but no one, including an infectious diseases consultant with decades of experience, had thought it could be TB. The hospital’s clinical review of her case confirmed that there had been missed opportunities on the part of her medical team and that “TB might have been more actively pursued as a possible diagnosis”. They had been looking at the bottom part of her lung X-rays and not the top, where the TB marks were clear to see. So she had died of a 19th-century illness in a 21st-century hospital less than a 15-minute walk from Keats’s house in Hampstead.

Fauzia had been as unlucky in death as she had been unlucky in life. For much of her 45 years, she had serious depression, which led to self-destructiveness and mind-numbing years on Prozac. She had a serious eating disorder and looked frail in the weeks leading to her death.

But before these things crushed her life completely, she was passionate about art. She showed a natural talent for it as a child, winning competitions at primary school and getting accepted on to a fine art foundation course at Central Saint Martins on a late admission with a single painting in her portfolio.

She was the eldest daughter of Pakistani immigrants who had grown up in poverty: our family had come from Lahore in the late 1970s and ended up homeless. We squatted for almost a year in a damp single room in Hampstead. Fauzia was seven then – old enough to feel the trauma more keenly than I did. At Saint Martins, surrounded by posh, privileged teenagers, her self-belief leaked away. She started staying at home in her dressing gown, convincing herself that she didn’t deserve to be there.

That Easter, she dropped out of the course and sank into her first big depression. Some friends suggested she go to Rome with them. She was excited by the idea and my mother somehow raised enough money for the air ticket. She returned ebullient, speaking breathlessly of the art she had seen, especially in the Sistine Chapel.

But that ebullience didn’t last and the wall of depression that came down sabotaged decades of her life. She stopped drawing altogether, even though it was the only thing that brought her any pleasure or relief.

One day in her late 30s, she accompanied our mother to a sewing class at the local Asian Women’s Centre in North London, which was filled with retirement-age women speaking in Hindi, Gujarati or Urdu. Fauzia’s embroidery dazzled the class and it also reignited her creative passion. She was accepted for an art degree at Camberwell College of Arts. She had been given another chance, after so many years of darkness.

Then she fell ill again.

Even in her hospital bed, as she lay gasping and out of breath, she spoke with urgency of getting back to her art. My mother brought her a piece of embroidery – the last she was to work on – which featured figures who look like they were from a Renaissance painting, but running across the cloth was a human spine sewn in black thread. What was she thinking? Why had she sewn it? Was her body revealing knowledge of its own disease?

“Oh Mum, I’m dying,” was the last thing she said to my mother, before being sedated for the final time. When, later, we gathered up her art, I was astonished by its volume. There must have been a maelstrom of productivity in the last two years for her to have done so much. We had been given 30 days to empty her one-bedroom, housing association flat in London, and there seemed to be less and less of her as we hollowed it out. Except for her art, which expanded and gained surprising life. It emerged from drawers, cupboards, and the sides of the wardrobe. This was found treasure to me, its physicality a defiance of the dissolution of death.

It seemed as if she had been taken over by a fever to create as much as she could in her last months. Was this final, creative fury a feature of TB? Did she, like Keats, feel herself turning into an ever more remote observer of the world as she lay in her various sickbeds? She would have had every right to feel bitter about the timing of her death, which came just as she had stopped wishing for it, and become inspired to live again, finally, though her art.

The Non-Catholic Cemetery for Foreigners in Rome is a walled plot of sloping land, set well away from the main road so that it is sealed off from the sounds of traffic. A noticeboard at the gate tells me that Gramsci and Shelley are buried here. So is Keats. I stand at the mouth of the cemetery, in awe of its cultivation, its grand, gothic headstones and its otherworldly hush. I can see a small clump of tourists at one end but everyone is speaking in low tones. I see the flashing tails of the cats that have made the graveyard their home as I wander around. It is spitting rain today rather than a downpour. Keats’s grave is away from most of the others in the cemetery, in its own grassy corner. There is one other beside him, that of his friend Severn, who held him as he died in Rome, and whose own death came decades later in 1879.

The poet, Geoffrey Hill, writes of death as an annihilator of all our well-laid plans. “I have not finished” is the final cry of his poem, Funeral Music. But Keats had barely begun. He felt so cheated by life, in fact, that he told Severn, who had accompanied him to Rome, that he wanted his grave to remain unnamed, but for a single line: “Here lies one whose name was writ in water.”

I approach their gravestones standing side by side, and sit on the bench opposite to read that mournful line, and then see the lines Keats’s old housemate, Charles Brown, and friend, Percy Bysshe Shelley, added in defiance of his instructions. Just above Keats’s inscription are the words: “This Grave contains all that was Mortal of a Young English Poet, Who, on his Death Bed, in the Bitterness of his Heart, at the Malicious Power of his Enemies, Desired these Words to be engraven on his Tomb Stone.”

It is raining on the day of my sister’s funeral on Thursday 16 June 2016. Muslims bury their dead quickly – ideally within 24 hours – and I have barely accepted that Fauzia has died when I see her coffin draped in a green and gold sheet adorned with Quranic verse as it is taken from the undertakers into the hearse.

I think about the day ahead as we get ready to set off. It will be a tiny funeral because my sister has very few friends. She was, through her life, slowly abandoned, partly because her mental health problems made her difficult to be close to but partly, I think, because the world prefers happy people.

My mother, my brother, Tariq, and I get into the hearse that will take us, together with my sister behind us, from the undertakers to Regent’s Park Mosque. The driver puts on a tape of Quranic text and begins to talk about other drives, other customers, as if this were an ordinary day, but then it is for him, I realise. He finally quietens and each of us gathers into ourselves. It has been left to me to organise most of today and I run through the order of things, and feel a vague anxiety about the final, burying part of the day. In Islamic tradition, only men must carry a coffin to its grave and I begin to wonder how many will turn out at the cemetery. Earlier, the undertakers had explained that they were one man short so we were to be accompanied by a single man rather than the usual pair. What would happen if there weren’t enough men?

Fauzia’s coffin is carried into Regent’s Park Mosque for afternoon prayer and placed at the top of the room. The imam tells the congregation that the coffin is that of a woman, as he is supposed to do, but his short announcement devastates me, just as it had done when I registered her death and saw her new status imprinted in ink. The language around death – its quotidian nature – seems so inadequate and anonymised in the face of the unspeakable grief I am feeling. Yes, here is a woman in a coffin. My older sister, Fauzia. My first best friend and protector, and also the first of our tiny family to be making this journey out of the world.

In the ride from the mosque to the Muslim section of Hendon Cemetery, the rain begins to drum on the hearse. I am in a state of growing panic about Fauzia’s coffin being carried to its grave. There is one elderly uncle with a walking stick who has turned up at the mosque and is following our car to the cemetery but he isn’t capable of carrying anything but himself. We have asked the Royal Free Hospital’s imam to be at the cemetery but he is elderly too. There is my brother, which makes one, but even if I count myself among the men we need two more. I look at my mother and brother sitting in the hearse, lost in their thoughts. I am too worried even to say it out loud and so I sit, stewing about what will happen at the other end of this journey, until finally I whisper it to my mother and I see her eyes fill with worry.

The rain comes down heavier as we get out of the car. My mother and I stand wet and huddled, both trying to find a silent solution for getting Fauzia to her grave. Then, splashing their way towards us, a group of young men emerge. Tariq is leading the way and his closest childhood friends are behind him. There are lots of them: boys who have become tall, rangy men with children of their own. They are all in smart suits, getting wetter as they walk towards the grave.

They have seen Fauzia grow up and know all the secret points of pain that childhood friends know of each other’s families. Here they are, come to carry my sister to her last resting place. The heavens don’t part and it doesn’t even stop raining. But we have our own small miracle.

It is another rainy morning in central Rome. Today I have come to the Vatican just as it opens to the public. A friend has told me I must head straight to the Sistine Chapel, not stopping to look left or right. Run if you have to, he says, to get there before the crowd. I feel a great fizzing excitement and then the rising of memories as I walk: of Fauzia unfurling the poster she brought home, of Michelangelo’s The Creation of Adam; the way she spoke of Rome; of how the Sistine Chapel felt like a miracle; and how she came back transfigured.

I break into a slow run. Am I running from, or to, the death of my sister? I see gilt-edged frames and glimpse a haze of cherubs, Madonnas, Pietàs. I turn innumerable corners and begin to wonder if I have gone down the wrong staircase until I am suddenly at the chapel itself.

I walk in and stand at its centre, wanting to look everywhere at once. I think of Fauzia. I am her eyes and my own. There is a collision of worlds here: humans and phantoms. God and the Devil. The seen and unseen. Now and eternity. I look up and see The Creation above me, and I see Fauzia smiling at its glory. The longer I look, the brighter the paint gleams. Figures constantly emerge from the sea of humanity on the walls. A woman in a green dress on the central altar wall that I didn’t see in the first hour. A man balancing a pillar on his back. Another with his head in his hands. A serpent wound around the legs of a man. Sky, clouds, death, life, wretchedness and joy. Occasionally, a priest speaks from the front of the chapel to hush the crowd and remind us that this is a place of contemplation. “Worlds without end,” he adds, which gives me a strange sense of comfort. After two and a half hours, I wrench myself away. If I ever need to feel close to Fauzia, I will come back here.

I return to the Spanish Steps on my final day in Rome. The sun is shining. The noise no longer offends me. We live and we die. Life goes on, noisy and vigorous, without us. I look up to the poet’s window. There’s a shadow behind the blind and, just for a moment, it seems that Keats is at his window, looking down at the abundant life in this sun-drenched, autumn square. Worlds without end.

Arifa Akbar is chief theatre critic of The Guardian

Photographs Getty Images; all other images courtesy of the author