epilepsy
End of life planning
For personal reasons, time running out, end of life, setting one’s house in order, leaving clear instructions, tidying up loose ends … they’re all much in my thoughts this week. So an obituary jumped out and hit me between the eyes.
Marieke Vervoort. Belgian gold medal winner at the London 2012 Paralympic Games …
… ran the strap line. Followed by …
… who ended her life by euthanasia
Oh wow! Never seen it spelled out like this before. So why did this celebrity decide to end her life at the tender age of 40? (NB. A few details in the official obituary I have no means of verifying, so I can only repeat them on trust.)
Marieke Vervoort was born in Belgium, became a sporty child, and had ambitions to be a PE teacher. However, at the age of 14 she began to suffer repeated infections in her Achilles tendon. The eventual diagnosis? Reflex sympathetic dystrophy, a progressive disease which gradually crept up her body. The prognosis? Grim: tetraplegia. And it came with epileptic seizures and terrible pain; so bad indeed that she was often unable to sleep for more than 10 minutes a night. Imagine the toll of that little lot.
In spite of all this, Marieke fought back and has been acclaimed around the world. The list of her accomplishments is mind-blowing:
2006 – paratriathlon world champion
2007 – paratriathlon world champion
After this her condition worsened and she moved into wheelchair racing.
2012 – won gold medal in 100m sprint and silver in 200m at London Paralympics
2013 – set new European record in 200m and world records in 400m and 800m in Belgium
2013 – suffered a serious shoulder injury while racing, and was told by a doctor she would never return to her previous level. This made her even more determined to succeed.
2014 – won 200m and 1500m and 800m in Switzerland, setting three new world records
2014 – spilt boiling water on her legs after an epileptic fit while cooking – necessitating 4 months in hospital
2015 – won 100, 200 and 400m titles at the world championships in Doha
2016 – won silver medal in the 400m at the Rio Olympics after being violently sick for 30 hours and on a rehydration drip
2016 – won bronze in the 100m at the same games in spite of running a fever with an kidney infection at the time
2017 – paralysis reached her chest, vision deteriorated, finger function declined. She took up sky-diving in a vertical wind tunnel
September 2019 – fulfilled her wish to be driven around the Zolder race circuit in a Lamborghini Huracan
22 October 2019 – died by euthanasia in Belgium
A simple catalogue of her triumphs is wholly inadequate. The price for high achievements on the sporting field, even for the most physically able, is very steep. Here was a young woman coping with well-nigh impossible odds. Progressive paralysis, mind-altering levels of pain, terrible injuries. And still she came back fighting. What an indomitable spirit. The sheer grit and perseverance and endurance of arduous training and fitness building as well as competing, can only be dimly perceived.
But a ‘living hell’ was not on Marieke’s agenda of desirable goals. Aware of her prognosis and obvious deterioration, she signed up for euthanasia in 2008, giving her a trump card to hold in reserve. (NB. This is legal in Belgium.) Eleven years later she has finally played that ace. It would surely take a heart of stone to be unsympathetic to this courageous young woman’s decision. Interestingly, also this week, an interview with MP Sir Vince Cable suggested that the Assisted Dying Bill looks set for another hearing soon in this country. I wonder if Marieke Vervoort’s story will feature.
Patrick Branwell Brontë
Who hasn’t heard of Daphne du Maurier? Her novel Rebecca was an instant success and has never stopped selling. Jamaica Inn, My Cousin Rachel, Frenchman’s Creek … all classics of English literature. But du Maurier herself had her own insecurities. As she wrote to a Brontë scholar who helped her with research into the life of Patrick Branwell Brontë: ‘My novels are what is known as popular and sell very well, but I am not a critic’s favourite, indeed I am generally dismissed with a sneer as a bestseller and not reviewed at all … I have no illusions to that.’
Hey, most of us would be more than content with being recognised as a best-seller! But her works of non-fiction are certainly far less well known, so when I came across a copy of The Infernal World of Branwell Brontë, I snapped it up.
A life-long fan of the novels by the Brontë sisters, du Maurier was increasingly intrigued by their feckless brother Branwell, (1817-1848), and after a visit to Haworth and the Brontë Parsonage, she set about writing what she hoped would be taken as a serious and scholarly story of his life that would rescue him from relative obscurity as she saw it, and her from dismissal as a literary lightweight.
With a history of mental ill health in both herself and her husband, Daphne came to Branwell’s life with considerable sympathy and understanding. Indeed she recognised that the genius of the three Brontë sisters owed much to the inspiration and imagination of their only brother Patrick Branwell, who was nevertheless ‘long maligned, neglected and despised‘. Branwell, she concluded, failed in life because he was unable to distinguish truth from fiction, reality from fantasy. His own ‘infernal world‘ as a lonely alcohol-dependent only son and second-rate writer simply didn’t equate to the brilliance of his imagination.
Pampered, adored and spoiled as a youth following the death of his mother, subject to nerve tremors and convulsions (epilepsy in the 19th century was associated with insanity), he was considered too highly strung and overwrought to be sent to school. Accordingly he was home educated.
He was a precocious child with a photographic memory and a phenomenal capacity to learn and recollect information, coupled with an extraordinary ability to use both hands equally dexterously and write different things at the same time. He was also highly strung and excitable, with a nervous temperament, volatile, and subject to extreme mood swings. Very shortsighted and small for his age – he stopped growing at fourteen – he spent his time making up stories in microscopic writing and living in a fantasy world. His secluded and narrow upbringing coupled with the constant company of three sisters, meant that he arrived at an age of maturity with an almost childlike innocence, an immensely frustrated young adult.
Familiar with illness and death – he lost his mother and two beloved sisters before he was eight – he felt haunted and apprehensive all his life. His father’s religious views awed and terrified him and he turned his back on the strict moral code inculcated from childhood and took to keeping low company, drinking to excess, and succumbing to opium addiction (in those days opium was easily obtained and cheap). Laudanum softened the nagging voices and disappointments, coloured his drab world, and turned nightmares into delicious dreams. He joined the Freemasons at one stage, but gave them up after a time, unable to live up to their expectations, and consumed by fear that he had betrayed their secrets while inebriated.
Though a talented painter, prolific writer of poetry, plays and prose, he met with repeated failures and disappointments. No patronage was forthcoming. Crushed by the callousness of editors and writers alike, who simply failed to even acknowledge his letters or samples of his work, with no real sense of how good or bad his writing was, and sheltered from real life, he drifted from one disaster to another.
Even his short and inglorious tenure as a station-master at an insignificant branch line with the new Leeds and Manchester railway company, ended when he was dismissed for negligence, careless book-keeping, absence from duty and a strong suspicion of theft, leaving his pride severely dented: ‘He, Branwell Brontë, the brilliant versatile genius of the family, had not been able to hold down the trumpery job of station-master on a branch line.’ His own ignominy was thrown into starker relief by the industry of his sisters who were gaining both experience and knowledge, broadening their horizons, going out to work, establishing reputations, travelling, furthering their education with learned men.
Through his sister’s connections he eventually found a post as tutor to a young teenage lad, but it too ended abruptly. Something happened – something ‘bad beyond expressing‘ – when tutor and pupil were left alone, which remained unidentified. Branwell once again deadened his shame with drink. Depression overwhelmed him. Violent mood swings from despair to high elation and back followed. The convulsions increased.
Meanwhile his three sisters, Charlotte, Emily and Anne, began to find some measure of acclaim for their writing – under the pseudonyms of Currer, Ellis and Acton Bell – driving Branwell further and further into his world ‘walking arm-in-arm with the dark figure of MISERY‘. Amazing today to think their novels – Wuthering Heights, Agnes Grey, The Professor – were rejected by a dreary round of publishing houses, but initially that reality fed into Branwell’s conviction that it was useless for unknown writers to attempt to enter the literary world. But then, unexpected success and instant acclaim came for Jane Eyre, which quickly became the talk, not only of literary London, but amongst the whole of the country’s reading public. The identity of its author was known only to Charlotte’s sisters; Branwell, with whom she had plotted and colluded and created their ‘infernal world‘ throughout their childhood, must not be allowed into the secret, ‘for fear of causing him too deep a pang of remorse for his own time misspent, and talents misapplied.‘ In fact Branwell did know, but would not give them the satisfaction of knowing he did.
I agree with Justine Picardie in her introduction to the book: this biography, whilst fascinating, is rather weighed down by du Maurier’s ‘excessive diligence‘. But she has my sympathy. It must have been an impossible task to sift the truth from the writings of such a dissolute and deluded mind; and apparently she found the good people of Howarth very reluctant to talk about the facts of the past. So I for one will applaud her for her serious efforts, but turn back to her novels as testament to her own brilliance.
Eugenics: fact and fiction
You’ve probably already heard of the American Eugenics Sterilization Program, in operation in the late 19th, early 20th century. If not … a quick résumé by way of context for today’s post.
The ‘program’ was designed to preserve and improve the strongest and ‘best’ within the society, and it did so by preventing the birth of babies to men and women with mental and social problems: the ‘mentally defective‘, ‘morons‘, the ‘feeble-minded‘, those with epilepsy, families on ‘welfare‘ – the very language makes us cringe today, doesn’t it? But sterilizing these unfortunate citizens was considered to be in the ‘public good‘. It was later judged – rightly – as a terrible violation of human rights, but it’s only in the last few years that any sense of justice or compensation has been offered.
Most states stopped this practice after World War II, uncomfortable with the comparison with the Nazi eugenic experiments in Germany, about which much more is known, but North Carolina continued, and is said to have carried out as many as 7600 such operations between 1929 and 1975. North Carolina was also the only state to give social workers the power to petition for the operation for specific individuals; elsewhere it was limited to those already in institutions.
It’s against this shameful period of American history that Diane Chamberlain 
sets her novel, Necessary Lies. As a former social worker herself, she’s probably got a certain edge when it comes to writing on this subject; she beautifully captures the ambivalence some professionals felt in determining what was in the best interests of their clients at a time when few choices existed; punitive views relating to sexual behaviour were prevalent; little was known about genetic inheritance; racial intolerance was rife; and class distinctions were very much the norm.
Jane Forrester is a young idealistic woman, newly married to a doctor, Robert, who disapproves of wives working. Jane unilaterally decides to postpone having children herself in order to become a social worker and help vulnerable families. When she encounters the Harts – two teenage girls, an illegitimate son, and an ageing grandmother – living in abject poverty, she simply cannot stand by while their rights are abused by well-meaning professionals. Before long she’s in deep trouble with her husband, her colleagues, and the police.
Chamberlain herself acknowledges that this was a research-heavy novel, but it doesn’t come across that way. The simplicity of the narrators’ voices, the un-sensationalised story line, the authentic emotions, combine to make this tale both challenging and gripping, heart-stopping and powerful. I’m not sure I’d have had the courage to be a Jane Forrester, but I’d definitely have wanted her on my side, deceptions and head lice notwithstanding! How about you?
The Universe versus Alex Woods
I’m happy to report that the new computer is flying along and overall I’m loving it. Still a few things to get the hang of, but happily writing my blog is not one of them. So here goes.
As you may (or may not) recall, I went to hear Gavin Extence speaking at the Book Festival in August. He wasn’t actually talking about his book, The Universe Versus Alex Woods, (he was presenting the case for assisted dying in a debate) but nevertheless, I bought a copy – of course I did; it’s his version of my Right to Die! And I’ve now finished reading it.
The Universe Versus Alex Woods (perfect title, by the way) is very readable, touching and amusing, and I enjoyed it, but it wasn’t what I was expecting. Extence says himself he didn’t set out to deal with assisted dying; he wanted to write about this teenager who’s had a difficult life who goes on to perform an act of unconventional selfless heroism.
Which probably accounts for the structure. We know from the outset that Alex Woods is connected to Mr Peterson when he’s stopped at Dover customs with an urn of ashes and 113 grams of marijuana, but it takes Gavin Extence 100 pages to get around to the two meeting. And another 100 pages to present the kernel of the story. First we must get to know Alex Woods: details of his extraordinary accident (hit on the head by a 2.3 kilogram meteorite travelling at 200 miles an hour) and the consequences of his resultant epileptic fits, his puny person, his zany mother, bullying, difficult relationships, his own bizarre responses, his regular sparring with big moral questions and social niceties.
We know far less about Mr Peterson, a rather bad tempered but grieving widower, very attached to his dog and his books. He and Alex are thrown together when Alex has to do penance for a crime he didn’t commit, but they discover mutual interests and develop a strange but warmly wholesome relationship. Through Alex’s eyes Mr Peterson becomes a sparky character given to wise words and robust common sense.
So, although Alex is a teenager, below the age of accepted moral competence, he is the only person Mr Peterson confides in when he develops the intractable neurodegenerative disease, Progressive Supranuclear Palsy. It’s a heavy burden for Alex to carry.
PSP might well ring vague bells for you. Remember the real-life case a few years ago, plastered all over the papers, headline news on TV, of the doctor, Anne Turner, who left 100 letters saying, ‘By the time you read this I’ll be dead‘? She’d already nursed her husband through something similar, and she was determined not to linger with it herself. Her three grown up children accompanied her to Switzerland where she drank a lethal dose of medicine. Her decision and the reactions of her family and the authorities were all replayed on TV.
Anyway, Mr Peterson knows he’s destined to lose his ability to take action before too long and he’s mapped out a pathway for himself. Only things don’t go according to plan, and Alex becomes embroiled in his exit. The police characterise Alex as vulnerable – ‘intelligent but extremely naive, and possibly disturbed,’ brain damaged, fatherless, friendless, with a mother of ‘dubious credentials and capabilities‘. He’s easily manipulated, his ‘ethical abilities‘ have been ‘compromised‘. The media spin him into a violent sociopath with an inability to feel emotion, the product of a sinister religious cult, with a troubled record as a young teenager.
Mr Peterson’s unsound judgement is beyond doubt in the eyes of the press: he’s psychologically damaged by the conflict in Vietnam; he’s recently bereaved; he’s been sectioned and incarcerated in a psychiatric ward after attempting suicide; he’s been fraternising with a minor … they weave all sorts of innuendos through this inexplicable relationship.
We, of course, know the reality. Both Alex and Mr Peterson are into moral decision-making in a big way, analysing things in private and together to tease out the right course of action. As the old man says: ‘Don’t ever surrender your right to make your own moral decisions, kid.‘
Mr Peterson sums up his predicament succinctly while he’s still in the psychiatric ward after attempting suicide: ‘I don’t want to die, kid. No one wants to die. But you know where I’m heading a little down the line. My future’s already written. If I don’t want to face that, there’s only one way out.’ And later: ‘I have a life worth living at the moment and I might still have a life worth living six months from now. Even a year from now. I don’t know. But what I do know is that sooner or later the balance is going to tip. Sooner or later I’m gonna have a life I can no longer bear. And by that time, chances are there won’t be a damn thing I can do about it. I’ll be in some kind of hospice. I won’t be able to stand or speak, let alone take the necessary steps to end it all. That’s what’s unbearable.’
And Alex understands that: ‘Knowing that there was a way out, and that his suffering was not going to become unendurable, was the one thing that allowed Mr Peterson to go on living, much longer than he would otherwise have wanted. It was the weeks leading up to our pact that were shrouded in darkness and despair; after its inception, life became a meaningful prospect once more.’
This is an ambitious debut novel. Extence has delved deep and wide – into human relationships, epilepsy, meteorology, astronomy, tarot card reading, mathematics, theoretical physics, literature, classical music, neurological disease … Some aspects I found rather less than convincing – the accident, the escape, the ending; but for the most part he has woven an intricate and compelling story. And he’s gone right to the kernel of the ethical debate, so this book sits comfortable in my list of novels dealing with assisted dying.
Permanent present tense
Phew! It’s baking hot in the Peppers Theatre at lunchtime today. Ladies discreetly fan themselves with their tickets; jackets, jumpers, over-blouses are discarded. Loud thumping music reverberates through the tent for the first 20 minutes. It’s dim, the speaker is using slides, the chairman is very wordy. It’s like a how-not-to manual!
But neuroscientist Professor Suzanne Corkin, seems unfazed. When she was 27 she met a remarkable man and she remained ‘his friend’ for 46 years until his death. She’s here to tell his story; recounted in Permanent Present Tense.
Henry Molaison was 10 when he began to have petit mal attacks, 15 when generalised convulsions began. They became both debilitating and socially damaging, so in the 1950s he underwent an experimental psycho-surgical procedure. For him, the result of years of strong anti-convulsants, followed by the removal of parts of his brain, was disastrous: he lost the ability to form new memories for the rest of his life. Pause for a moment … What would that be like? … Never remembering anything. But Molaison’s catastrophe proved to be a gift to humanity, because studying him facilitated a revolution in the neuroscience of memory. As he put it himself: ‘What is found out about me helps you to help others.‘
The professor plays a tape of his voice as if to get us closer to the man himself, and then outlines some of the tests she and her team did on him: counting backwards in threes, recalling letters, remembering stories, reproducing drawings, matching words to definitions (oh, simple everyday words like hagira, anchorite, egress, manumit, welkin, minatory, quotidian), identifying celebrities and why they were famous (eg Julie Andrews, Lee Harvey Oswald, John F Kennedy, Ray Charles, Woody Allen, Liza Minelli, Mikhail Gorbachev). Yoiks, I’d have been struggling with some of these tests! HM (as he was known), proved a dab hand at mirror-tracing, but on most exercises he showed a complete inability to convert short term memory into long term.
And yet what shines through is the warm friendship Corkin had for her patient. He was, she says, a gentle soul, intelligent, friendly, altruistic, and witty. As he said spontaneously once: ‘It’s a funny thing, you just live and learn. I’m living and you’re learning.’
A year after his death, in line with his consent, his brain was sliced into 2,401 slices each the thickness of a hair. Ongoing invaluable material for the scientists. What a legacy.