stroke
A Stroke of Insight
Early in her life, Dr Jill Bolte Taylor, was drawn to the internal workings of the human brain when her brother presented with schizophrenia. That curiosity took her into the world of scientific enquiry where she excelled as a neuroanatomist. Then one morning, when she was only 37 years of age, everything changed.
I was in my mid-thirties and thriving both professionally and personally. But in one fell swoop, the rosiness of my life and promising future evaporated. I woke up on December 10, 1996, to discover I had a brain disorder of my own. I was having a stroke. Within four brief hours, I watched my mind completely deteriorate in its ability to process all stimulation coming in through my senses. This rare form of hemorrhage rendered me completely disabled whereby I could not walk, talk, read, write, or recall any aspects of my life.
Unknown to her she had an arteriovenous malformation in her brain which had just blown, pouring blood into the left hemisphere. Miraculously she was able to observe the disintegration and in My Stroke of Insight she has recorded the whole experience and her recovery through the eyes of a neuroscientist, and she shares the unique insight it has given her into the beauty and resilience of the human brain with its intuitive right side and the logical left. She includes a limited amount of simple science to help understanding, but essentially this is a personal account of a shattering experience.
The dawning realisation of what was happening on the fateful morning came with the systematic loss of each function, each analytical reaction. Astonishingly, after an initial confusion, as more and more blood flowed into her brain, she fairly soon felt a growing sense of peace, enfolded in a blanket of tranquil euphoria … an expanding sense of grace. Without the traditional awareness of her physical boundaries, she felt fluid rather than solid, at one with the vastness of the universe.
In the absence of the left hemisphere’s analytical judgment, I was completely entranced by the feelings of tranquillity, safety, blessedness, euphoria, and omniscience.
Despite the fact that her brain was by now no longer capable of creating connections between things, she knew she needed to get help. Alone in her flat, it took her over 45 minutes of intense concentration to finally recall her work number and phone a colleague who knew her well enough to recognise the garbled noise spelled trouble. By the time Jill arrived in the hospital her ability to differentiate anything had faded and she no longer felt grounded in the external world.
In the absence of sight, sound, touch, smell, taste and fear, I felt my spirit surrender its attachment to this body and I was released from pain.
Realising that her keen scientific brain was no longer available to record, relate, detail and categorize information about the surrounding external three dimensional space she wanted to howl like a baby. She felt tremendous despair that she had survived. After a lifetime of being super-charged, that day she learned the meaning of simply being.
But somehow she managed to retain the memory of that first bitter-sweet day and has recorded brilliant insights into the complete inability to put information together and answer the most simple of questions, to make sense of sound or sight, space and form, boundaries between objects, smells, temperature, pain, the position of her own body … never mind what was inside her damaged mind.
She survived but recovery was painstaking. At first she had to concentrate on breaking every task down into manageable steps, every tiny effort taking so much time and energy. Her brain was on sensory overload and simply couldn’t process the barrage of information coming at her. It was exhausting. The left hemisphere had to be taught everything all over again, but here she had the inestimable support of her patient and intuitive mother who came to live with her and played a pivotal role in helping her begin to rehabiltate.
Sixteen days after the stroke happened, she was strong enough to have her cranium opened (craniotomy with a 9” scar) and the blood clot and tangle of blood vessels surgically removed. The effort needed to recover was agony; so much so that she had to make a conscious effort a million times a day to endure it and persist, to deliberately choose the chaos of recovery over the peaceful tranquillity of the divine bliss that she’d experienced. Huge amounts of healing sleep without sensory input were required, during which her brain painstakingly filed information.
It took eight challenging years to recover; eight years during which she watched her mind analysing and recording everything that was going on in her brain. And astonishingly she discovered that she could now choose which emotional programmes she was interested in retaining; choose who and how she wanted to be in this post-stroke world; consciously develop characteristics in her personality and reactions that she liked and wanted to promote – a loving and peaceful mind, and a kinder way of living. For her, even amidst the normal chaos of a busy life, deep inner peace is just a thought/feeling away.
Learning to value and utilize all our cognitive gifts opens our lives up to the masterpiece of life we truly are. Imagine the compasssionate world we could create if we set our minds to it.
For me this conclusion is a leap too far. Just because Jill, with her unique abilities and experiences, has come to this conclusion and belief for herself doesn’t mean it’s a conscious possibility for us all. But I’d love to be proved wrong!
Locked in to a fate worse than death
Tony Nicklinson is 58. He’s paralysed from the neck down, can’t speak, and his only means of communication is by moving his eyes on a screen linked to a special computer. And yet his brain is so alive and intelligent that he can hold his own in arguments with twitters and QCs alike.
Prior to the stroke, Mr Nicklinson was a handsome, successful, fun-loving man, keen on extreme sports. He was in Greece on a business trip, when he suffered a catastrophic stroke in 2005. Now he is in a locked-in state, dependent on carers for his every need, with no hope of recovery. He considers his life as ‘miserable, demeaning and undignified‘. He ‘has no privacy or dignity left‘, and he rates it a state worse than death. He’s held that view since 2007; it’s no passing whim. It’s what’s described as a ‘voluntary, clear, settled and informed wish’ in legal parlance. Watching him on The Channel 4 documentary, Let Our Dad Die, surely no one could help but sympathise with his viewpoint. Even the Greek doctor who saved his life is appalled by the consequences of his actions, although no blame attaches to him.
In March Mr Nicklinson won the right to have his case heard by the High Court. The hearing took place last week (starting 19 June). There was considerable media interest in the run up to it. Lord Falconer visited the family at home. BBC’s Fergus Walsh went to see for himself what kind of a life a locked-in patient has. Channel 4 aired its documentary. Though he could communicate with these people in his own home, Mr Nicklinson was unable to attend the hearing in person, so he stated his arguments through emails and lawyers.
His case? Simply put, he is incapable of taking his own life, so he wants the judges to rule that, when he decides he wants to die, a doctor will be immune from prosecution if he/she helps him. Mr Nicklinson fully realises that the law as it stands prohibits anyone else taking his life; that would be murder. His defence rests on the view that he is being discriminated against, because of his disability. He is looking for assistance to do what he would do for himself were he able. Furthermore he adds poignantly, why should other people be allowed to condemn him to a life of increasing misery?
His barrister described it in more ponderous legal terms: ‘a serious interference of his common law and Convention rights of autonomy and dignity’.
It’s important to note that Mr Nicklinson is not seeking a change in the law. He is seeking two declarations from the court.
1. That in the circumstances of his case – and where an order has been sought from the court in advance – ‘the common law defence of necessity would be available to a doctor who, acting out of his professional and human duty, assisted him to die‘.
2. That the current law of assisted suicide and euthanasia is incompatible with his Article 8 rights of autonomy and dignity .
The QC acting for this family argues that a prior sanction by a court ‘would provide the strongest possible safeguard against abuse’. And furthermore ‘it would also provide a safeguard against the concern, often expressed by disabled opponents of legalisation, that a change in the law would lead to a change in people’s attitudes to disabled people, who they predict would come under subtle pressure to seek an assisted death through fear of being a “burden”.’
But any loosening of the limits frightens the legal fraternity. Speaking directly to Mr Nicklinson, Lord Falconer made it perfectly clear that in his judgement, modifying the law to accommodate such an act would be ‘crossing the Rubicon’. He was himself sympathetic to assisted suicide in cases of terrible disability with no prospect of improvement, where the patient expressed a sustained wish to put an end to their misery, but ending someone else’s life is murder and that must always be unacceptable.
Pause here for a moment and ask yourself: What answer would I give to Tony Nicklinson?
Watching the documentary I wanted to weep with this man. His chagrin, his pain, were palpable. But there again, as Christina Petterson put it in The Independent,
‘… the law isn’t about how we feel. The law isn’t about how you feel if you were once healthy and fit and happy, and now aren’t. The law, as Lord Falconer said on that Dispatches, is the same for everybody. “If people want to kill themselves,” he said, it’s an “entirely private matter”, but “they can’t kill somebody else”. The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. “When you develop a society where some people judge that other people’s lives are not worth living,” he said, “that’s the Rubicon.”‘
There can be no happy ending for the Nicklinsons, neither Tony, nor his wife, nor his daughters. But each time a tragic case like this comes to court, and I watch the family being forced to parade their lives in front of others, to expend dwindling energy on fighting their cause, I feel there has to be an alternative.
I can, of course, see the dangers inherent in a change to the law against taking life. The consequences could be inconceivably horrible. I accept too that these extreme cases make bad laws. But the fact remains, that these exceptional circumstances do present from time to time. And they seem to cry out for special judgements.
Would it be so terrible to openly acknowledge this fact, and to relieve these families of the necessity of taking their cases to the courts? Why not constitute a sort of Ombudscommittee – a gathering of carefully selected, experienced and wise folk, representing law, medicine, religion, ethics, patients – who could quietly, rationally, compassionately, debate the very few cases which fall into this terrible legal limbo, taking guidance from others as and when they need it? Not in such a way as to drive the debate underground, not to sweep the anomalies under the carpet, but to take individual cases away from the heat and distortion of media coverage, protecting and supporting those for whom this dilemma is a lived reality not a theoretical argument.
I haven’t ever seen this idea promoted, and it’s the first time I’ve aired my own view on this. So what do you think? Would you be in favour? Or can you see some glaring reason why this would not be an acceptable way forward?
What would your solution be?