Sunday 28 December 2014

The greengrocer, the judge, Hari Krishna and Coca Cola

A few days before the end of November 2014, I started behaving strangely. I took a bath and when I'd finished drying off, I annoyed myself by stupidly dropping the towel into the bath 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.
Two days later, Anne and I went to the Victoria & Albert Museum with our friend, Sebastian Balfour, to see “Disobedient Objects”. This was an exhibition of radical items from street demonstrations across the world.

There were photos of a recent protest in Rome: students confronting the riot squad with homemade shields constructed to look like book covers so that the police would be seen to be attacking literature: Boccaccio's The Decameron, Dante's The Divine Comedy, George Orwell's Homage to Catalonia.

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 sling-shot made from the tongue of a shoe that a Palestinian had used to defend himself against Israeli tanks.

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 and scones. After eating the scones, I wanted more tea and shocked them by pouring it, not into my cup, but into the tiny 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 use my mobile phone to exit the Underground 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 chronic subdural haematoma, a veinous bleed between the outside of the brain and the skull. 

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.

On December 3 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 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 back in the ward, I was speaking, functioning normally again, 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 blood and post-op saline solution. I asked Anne to bring me my computer the next day so that I could let my friends and family know I was myself again.

But recovery is not always straight forward. 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 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 read. I was assigned a speech therapist who 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'd lost the ability to speak could point at an image to indicate to staff 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 letters, I finally managed to pronounce “pain” phonetically. When the therapist asked me to read the next box with a picture of 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 it 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 the operation, they told her that the procedure carried risks—no improvement, seizures, infection, left in a vegetative state and even death. She told me later that, while I was in the operating theatre, she went to the hospital chapel and lit four candles for me: one from her: two from my sons and one from my grandson. She then sat in 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 can't recall being frightened from the moment I arrived at the Whittington to the moment I left Queen Square nearly 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 looked like I had the eyes of a wild horse.

At time of death it is said that the body releases chemicals that ease the mind from 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 the patients who worry least take longer to recover. Her reason being that the mind which fights off fear at the most critical of moments 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 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 to enable access for the brain to be scraped so as to remove old, dried blood 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 the consultant left my bedside I indicated to Anne to hand me the sheet of images and words 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 the pictures. I have no explanation for this except that a possible, more dangerous and invasive op 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.
Lying in that bed reminded me of my father. I felt I was starting to talk like him, dribble my food the same way he did when he was bedridden and even have similar illogical conversations.

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 from his home in Wembley 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, we would walk together on Hampstead Heath.

The white African was a puzzle. In his 70s, he had served in the Rhodesian army and had then been a welder and business man. 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 asked him why, he said he'd had a tumour behind his eye successfully removed through his nose. He told her this when they first talked together as he gave her a Costa coffee he had bought for her after seeing her looking distressed by my bedside.

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. Every day we were given a long menu (the food was excellent there) 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. A nurse relayed the message to tell him she'd called. The nurse then asked him to tell his wife not to be so miserable. 'Life is short,' she said.

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 told me they weren't allowed to touch him so I said, '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. And 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. I hope Nigel Farage doesn't spend any time in hospital.

I got flowers, fruit, cards and 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 and 400 US Reiki practitioners practised intuitive healing with me in mind.

When well enough to leave the ward, Anne took me to the chapel where she'd spend 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. One inscription in that book of hope and despair 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 says, 'Let us thank the NHS'. No idea where I am heading but, wherever it is, the health service have delayed my departure.

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