Sudden impact: The facts about strokes
Tuesday 23 June 2009
Jill Bolte-Taylor was just 37 years old when she suffered a massive stroke caused by the rupture of a blood vessel on the left side of her brain. Within hours she was semi-paralysed, having lost the ability to walk, talk, read and write.
But it was not only her youth that made her experience exceptional – it was her expertise. As a Harvard-trained neuroanatomist, she had a unique insight into what was happening as she experienced her brain shutting down from the inside.
Ten years later, having made a remarkable recovery, she published a book about her experience, which has become one of the publishing phenomena of the decade. It charts not only the medical details of her illness and recovery but also the insight it has given her into what she believes should be priorities in life.
The book was initially issued at her own expense, because, she said, she wanted to get it out to the public as quickly as possible. Then after two years it was picked up by Viking, an imprint of the US publisher Hodder and Stoughton. It went on to spend four months on the New York Times best-seller list. Now the book, My Stroke Of Insight, has been published as a Hodder paperback in the UK.
Last year Bolte-Taylor was named by Time magazine as one of the most influential people of 2008 and appeared on Oprah Winfrey's Soul Series. She travels to conferences and meetings twice a month to give talks on the brain and her book has been translated into 26 languages.
"It is beautiful to see the book have such an impact. But it is not about promoting it, it is about communicating the message – how we treat one another and what we are doing with communication on this planet. This is not a book about recovery from stroke, it is about our way of life," Bolte-Taylor says.
Stroke is one of the most common causes of death and disability in the UK. Around 150,000 people suffer a stroke each year, and stroke clinicians talk of the "rule of thirds" – a third die, a third suffer some disability and a third recover .
Bolte Taylor's remarkable recovery was in part due to her understanding of what was happening to her – and her rapid response. She awoke one December morning in 1996 with a piercing pain behind her left eye. Uncertain about its cause, she rolled out of bed, stumbled to the bathroom and turned on the tap. "I was startled by an abrupt and exaggerated clamour as the water surged into the tub," she wrote. The unexpected racket was the first indication something was wrong with her brain.
As her mind moved into "slow mode", before closing down completely she just had time to dial a colleague – with difficulty – who organised an ambulance to take her to hospital. There she was diagnosed with an Arterio-Venous malformation – a malformed artery in her brain, which had haemorrhaged, flooding the surface of her brain with blood.
The experience of the stroke she describes as more blissful than frightening – marked by a longing to withdraw into herself, away from the persistent voices around her demanding she wake up and answer futile questions about her name and the day of the week.
"I felt as though I was suspended in a peculiar euphoric stupor, and I was strangely elated when I understood that this unexpected pilgrimage into the intricate functions of my brain actually had a physiological basis and explanation. I kept thinking: 'Wow, how many scientists have the opportunity to study their own brain function and mental deterioration from the inside out?'"
She was admitted to the Massachusetts General Hospital, which seemed to her like a "bustling beehive", with people buzzing round her in her semi-conscious state, making demands: "Answer this, squeeze that, sign here." Her response was to pass out.
When she awoke later in the afternoon, she sensed two colleagues peering at her brain scan mounted on a light box above her head. "I could not decipher the words my colleagues softly shared, but their body language communicated the gravity of the situation. It didn't take someone with a PhD in neuroanatomy to figure out that the huge white hole in the middle of the brain scan didn't belong there. My left hemisphere was swimming in a pool of blood and my entire brain was swollen in response to the trauma."
She was fortunate to avoid surgery – in some cases it is necessary to drill into the skull to relieve the pressure caused by the bleeding – and within 48 hours she was deemed out of immediate danger and moved from the emergency ward to the neurological intensive care unit. Five days after the stroke, she left hospital. But she had to return two weeks later for a brain operation to repair the damaged artery.
Her book describes her struggle to recover and includes a list of "40 things I needed the most", starting with "I am not stupid, I am wounded – please respect me". Recovery, she says, is not something you do alone and having people believe she would recover completely was critical.
"Regardless of whether it would take three months, two years, 20 years or a lifetime, I needed people to have faith in my continued ability to learn, heal and grow," she writes.
She rejects the conventional medical view that continued recovery beyond six months is rare and insists she saw significant improvement in her own brain function for up to eight years after her stroke.
But at the heart of her book is her recognition of herself not as a person suffering a stroke but as a box of neural circuitry which had been injured in an accident. Her professional training gave her a different perspective, she says.
"I am a bunch of cells communicating with one another. When I lost all function it was because the cells were not well and it was my job to restore their function. It wasn't about me, it was about the cells. If I was tired, that became: what did the cells need? It shifted my focus from being a passive receiver of care into being a care-giver to my own cells," she said.
"Peace is just a thought away – it's a choice in this moment or any moment. The more you understand your brain, the more you understand how to get there when you need to."
This analysis – a combination of common sense and homespun wisdom – is a classic of the self-help genre. Its laudable aim is to help stroke patients come to terms with their condition and give them the tools to begin the long road to recovery. From there, however, Bolte Taylor segues into an account of life as viewed through the prism of a stroke survivor, lightly spiced with the teachings of Buddhism and eastern mysticism. "Since I am neural circuitry, my thoughts and emotions are just circuits. Recognising that takes away their power to cause drama and trauma in my life," she writes.
The experience of the stroke had introduced her to the potential of the right, undamaged hemisphere of her brain (the ruptured artery was on the left side). "The blessing I had received from this experience was the knowledge that deep internal peace is accessible to anyone at any time. I believe the experience of Nirvana exists in the consciousness of our right hemisphere, and that at any moment we can choose to hook into that part of our brain," she writes.
This may bring comfort to some readers – judging by her sales there are plenty of them – but for this one the quasi-spiritual mumbo-jumbo was a barrier rather than an aid. Provided you can ignore it, however, there is plenty else here to encourage and console.
My Stroke Of Insight by Jill Bolte-Taylor (Hodder £8.99)
Strokes: What you need to know
* An estimated 150,000 people have a stroke in the UK each year
* The elderly are not the only ones affected. Around 1,000 people under 30 and 10,000 under 65, have a stroke each year
* There are more than 67,000 deaths due to stroke each year in the UK
* Stroke is the third most common cause of death in England and Wales, after heart disease and cancer
* Stroke accounts for 9 per cent of all deaths in men and 13 per cent of deaths in women in the UK
* Stroke has a greater disability impact than any other chronic disease. More than 300,000 people are living with moderate to severe disabilities as a result of stroke
* The direct cost of stroke to the NHS is estimated to be £2.8 billion. The cost to the wider economy is £1.8 billion. The informal care cost is £2.4 billion
* The total costs of stroke care are predicted to rise in real terms by 30 per cent between 1991 and 2010
* Stroke patients occupy around 20 per cent of all acute hospital beds and 25 per cent of long-term beds
* Stroke units save lives: for stroke patients, general wards have a 14 per cent to 25 per cent higher mortality rate than stroke units
* Symptoms of stroke appear suddenly and include slurred speech, confusion, blurred vision and a severe headache
* One of the most noticeable signs is paralysis or weakness on one side of the body, which often appears as a drooping limb or a dribbling mouth
* FAST, the Face-Arm-Speech Test, helps you to recognise the signs of a stroke. Can the person smile? Can they raise both their arms? Can they speak clearly? If the answer to any of these is no then you should call 999
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