A year later, I had my own dangerous sea to cross. A few days before the end of November 2014, I started behaving strangely. I took a bath and when I’d finished, I annoyed myself by dropping the towel into the tub instead of onto the floor. Later, I pissed on the closed toilet seat. I went to the shops, came home with nothing and couldn’t open the front door. I was using the wrong key. I stared at my computer. I had forgotten how to type.
On Sunday, November 30th, Anne and I went to the Victoria and Albert Museum with our friend Sebastian Balfour to see ‘Disobedient Objects’. This was an exhibition of radical items from street demonstrations across the world. Hanging from the ceiling was a battered pan lid that had helped bring down the Argentine government in noisy rough-musik demonstrations. There was a slingshot made from the tongue of a shoe that a Palestinian had used against Israeli tanks and homemade shields made to look like book covers that had been carried by protesters in Rome. Students campaigning against austerity cuts in education had confronted the riot squad with Boccaccio’s The Decameron, Dante’s the Divine Comedy and George Orwell’s Homage to Catalonia. The police would be seen to be attacking literature.
It was surreal and my already-muddled head started to spin. I couldn’t read the text that accompanied the photos and displayed objects. With a splitting headache, I had to sit down. Was I finally being driven mad by radical politics?
We went to the café and Sebastian bought us tea. After eating the scones, I shocked the two of them by pouring my tea, not into my cup, but into the tiny strawberry jam jar. While we were there, Sebastian’s wife, Gráinne, rang him, and when he told her how I was behaving, she insisted I go to A&E immediately.
On my way to the Whittington Hospital in north London, I tried to exit the Underground using my mobile phone instead of swiping my travel card. Even I realised something was seriously wrong.
In triage they were sufficiently alarmed to give me a CT scan. It wasn’t political subversion that was scrambling my brain; it was a subdural haematoma, a slow veinous bleed in the head. There are two types, acute and chronic. The most serious is caused by trauma when an accident causes rapid bleeding to fill the area between the outer layer of the brain – the meninges – and the brain itself. This happened to Michael Schumacher and Natasha Richardson. Mine was the less serious chronic subdural haematoma.
You don’t have to be a racing driver, skier or cyclist to get subdural haematomas. They can occur after a minor head injury, especially among the elderly, when small veins between the surface of the brain and its outer covering stretch and tear. Blood then collects below the dura, a tough tissue that encloses the brain. This creates a competition between blood and brain and when blood wins, the brain is moved off-centre. In severe cases, the lower part of the brain can become affected which is a dangerous situation because the brain stem is where respiration is controlled.
If an operation is required for either type of haematoma, blood has to be drained to alleviate pressure on the brain. Douglas Katz, Assistant Professor of Neurology at Boston School of Medicine, has said ‘[a] person may appear fine initially because the mass of blood in the head is expanding and there isn’t too much pressure on the brain yet.’ He refers to this as ‘Talk and Die’ syndrome. Others call it ‘Walk and Die’. I was doing both at the time I was advised to get to A&E.
I was told that when a bed became available, I would be moved to one of two specialist hospitals for neurosurgery: Royal London or National Hospital for Neurology, Queen Square.
Over the next three days I became even more confused. Alarmed at my deterioration, Anne kept asking the Whittington when I was to be transferred, but Gráinne managed to discover the names and numbers of the bed managers at both hospitals and pestered them to take me as soon as possible. I later found out that Dorothy Byrne too had been actively pressing my case.
On December 3rd I was admitted to Queen Square and told I would be having an operation the next morning to drain two massive blood lakes on the left side of my brain. This was cancelled four times because of emergency cases. Anne refused to leave my bedside, afraid that if she did, I would be taken to theatre and she wouldn’t be able to accompany me. Afraid that it might be the last time she saw me, she spent the whole day slumped over my bed rail.
I was operated on late that evening. When I woke up in the ward, I was speaking and functioning normally, but with the additional fashion accessory of a square, flat plastic bag. It was attached by tubing to one of the holes drilled into my head to drain post-op saline solution and any remaining blood.
But recovery, like life, is not always straightforward. Twenty-four hours after the operation, I had an unexpected relapse. I was unable to remember my name or date of birth. I dreaded the nurses who came constantly to take my blood pressure. Their first question was always, ‘Where are you?’ I would try and work out my answer as I saw them approaching.
I couldn’t sleep and lay awake trying to work out what was going on. A cup of tea would be nice, except achieving it was difficult. I would walk towards the night desk, practising the words I needed. ‘Please, can I have a cup of tea?’ By the time
I reached the nurses’ station, I couldn’t get the words out, but they got used to me. As I stood there in silence, the duty nurse would smile, ‘Go back to bed and I’ll bring you some.’
I was now so confused I had no idea how to clean my teeth or use my mobile. When I went to the toilet, I couldn’t remember if it was wipe, shit, stand or sit, wipe, shit. It was all very scary.
I could only say ‘Yes’ or ‘No’ to questions. Words on a page no longer made sense. I had lost the ability to speak in sentences or to read. A speech therapist came to my bedside with word exercises. At first, I was unable to read single- syllable words like ‘book’ and ‘cold’. ‘Peanut butter’ was an impossibility.
I was given a sheet with pictures and the words underneath so patients who couldn’t speak could point at an image to indicate what they needed to communicate. On the first row in the first box was a figure holding his head. The text underneath said, ‘I’m in pain.’ I struggled to decipher ‘pain’. Stumbling over the tangle of letters, I finally managed to pronounce ‘pain’ phonetically. When the therapist asked me to read the next box with four figures holding hands that said ‘I want my family’, I repeated, ‘Pain’.
My Brazilian guitar teacher, Deicola Neves, brought his guitar and played bossa nova to the ward. He left the instrument with me but, when I tried to play, I couldn’t remember a single chord.
Anne knew more about my condition than I did. When she signed the consent form, just before my operation, they told her the procedure carried risks – seizures, infection, the possibility that I would not improve. Being left in a vegetative state, even death. Later she told me that, while I was in the operating theatre, she went to the hospital chapel and lit four candles for me: one from her and three on behalf of my sons and grandson. She then returned to the ward, staring at the empty space where my bed had been. She says she hoped for the best, but was preparing herself for the worst.
I don’t recall being frightened from the moment I arrived at the Whittington to the moment I left Queen Square three weeks later. I wasn’t even fearful when they took me to the operating theatre. I remember thinking, They’re just taking me for a check-up downstairs. Anne has a different opinion and tells me that, as they wheeled me away, I had the eyes of a frantic bronco.
At time of death it is said that the body releases chemicals that ease the mind from feelings of panic and fear. Perhaps this also happens when your skull is about to be opened. My consultant told me that patients facing brain surgery somehow manage to hold themselves together to be able to get through it. She added that patients who worry the least take longer to recover because the mind which fights off fear at the most critical of moments only delays the trauma, but cannot avoid it altogether.
Four days after the operation and with no improvement, my consultant stood at the foot of my bed. She was unhappy with my progress because my ability to speak and read had deteriorated so rapidly. I was told I might have to have a second, more invasive operation, and that this would involve substantial risk. Anne asked what was involved. She explained that a window of bone would have to be cut out of my skull so the brain could be scraped. This procedure would remove the old, dried blood from previous bleeds in the hope that my ability to read and speak would be restored. There was, she said, no guarantee of success. Anne asked for the time frame before a decision was made.
The consultant answered, ‘Two days’.
As soon as she left my bedside, I indicated to Anne to hand me the sheet the speech therapist had given me that morning. I had been able to read one word, pain. Miraculously, I slowly read out to Anne all the captions under all the pictures.
I have no explanation for this, except that a possible, more dangerous operation unlocked something in my mind. Without any other intervention, I began to speak and read. Within two hours, I was talking reasonably, and four days later I was home.
In my ward of six patients there was a greengrocer, a judge, a follower of Hari Krishna, a white Zimbabwean and an employee of Coca-Cola. I became friends with all of them, except the judge. The greengrocer lived by the principle of the Sufi, Abu Sa’id, who said, ‘Whatever you have in your hand – give it. Whatever is to be your fate – face it.’ He had faced two operations to remove a tumour on his pituitary gland. Four days after his discharge, he came to visit the ward and to give each of us a sack of tangerines.
The Hari Krishna kept offering me his vegan food. We agreed that, in the New Year, all things being well, we would walk together on Hampstead Heath.
Only the white African was a puzzle. In his 70s, he had served in the Rhodesian army and had then been a welder and businessman. He was nostalgic for lost ‘Empire’. But he spoke a number of African languages, was adored by the nurses – many of them African – and was always sympathetically curious about their lives. He shared with me my dislike of the judge.
The Coca-Cola man was the only one in the ward with no bandages. When Anne worked up the courage to ask him why, he said he’d had a tumour behind his eye successfully removed through his nose. He told her this when he brought her a Costa coffee after seeing her looking distressed before my operation. He’d noticed that she hadn’t left my bedside once. I warmed to him when he told me that he travelled the world for the company, but always refused to go to Israel. Then added that, although he drank ‘American champagne’, he knew it was a poison.
The judge treated the nurses as if they were on trial. Each day we were given a long menu (the food was excellent) and asked to choose our lunch and dinner. Once, when they brought the judge pasta, he complained he’d asked for spaghetti. They brought him the menu to show him that spaghetti was not on offer. ‘Well, I ordered it,’ he said. I wanted to tell him a neurological hospital is not the Ritz.
His wife rang one day and a nurse relayed the message to tell the judge she’d called. The nurse then asked him to tell his wife not to be so miserable because ‘Life is short’.
In a neighbouring ward there was Bill, an old soldier, officer class, who kept trying to escape. He would shuffle into our ward and be obnoxious to the nurses who had to follow him around to prevent him from falling or straying too far. He would physically and verbally abuse them, not caring that he was often taking several of them away from their duties.
Just after my op, when I was able to speak, he passed my bed with three black nurses and muttered that he was about to be cannibalised. I got out of bed, prepared to hit him. One of the nurses warned me off and said they weren’t allowed to touch him so I told him, ‘Get the fuck out of here and stop insulting the staff.’
The greengrocer told me that Bill was suffering after his operation. Maybe, but he had clearly been an unpleasant man pre-op. Scarce NHS resources were being used to guard him.
The nurses and cleaners came from Zimbabwe, Nigeria, Uganda, India, the Philippines, Poland, Lithuania, Northern Ireland, England, Columbia, Spain, Portugal. The surgeons were from Italy, China, Ireland, the Philippines and north London. The surgeon who saved my life was from Nigeria. All of them were incredibly skilled, friendly and supportive.
Friends sent me flowers, fruit and cards and I received daily phone calls from my son in Barcelona. Lapsed Catholics lit candles, an Iraqi atheist friend who was in Tunisia made a Friday visit to the mosque to pray for me. Anne’s sister-in-law in New Mexico invited 400 US Reiki practitioners to send me, a complete stranger, distant healing.
When I was well enough to leave the ward, Anne took me to the chapel where she’d spent an hour each day between the morning and afternoon visiting hours. On entering I saw a notice saying that ‘This chapel is for all faiths’. It should be changed to ‘... all faiths and none’.
On a table near a bank of candles, there is a visitors’ book. 226
In that book of hope and despair one inscription read ‘Thanks to all gods and goddesses and the NHS.’ Another was, ‘Mum was always heading for heaven. But please, God, not yet’.
I wrote my own message. In place of the gratitudes to God, Jesus and Allah, mine said ‘Let us thank the NHS’. I have no idea where I am heading but, wherever it is, my departure has been delayed. I am not lost at sea yet.
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