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Monday, January 29, 2018

Searching For An Alzheimer’s Cure While My Father Slips Away, by Peter Savodnik, The Guardian

At any given moment, thousands of trials are taking place all around the globe, geared toward eradicating Alzheimer’s disease, Lewy body dementia, frontotemporal dementia, vascular dementia and all the other dementias, disorders and syndromes that gradually, inexorably turn once-intact brains into hollowed-out husks. Each trial usually includes scores of patients, who researchers call enrollees, and each enrollee has at least one caregiver, and sometimes two or three. Before the enrolment, and before the caregiver signs the paperwork and commits to monthly visits, there are all the conversations between the caregiver and other concerned parties (the enrollee’s children, for example) – the strategy sessions. The thinking is: we can only take part in so many studies; if we pick the right study, we get first dibs on the magic potion, before anyone else, at a reduced rate. So you do your due diligence. You follow developments.


It takes a long time to see things clearly. First, you must convince yourself that nothing can be done. So you scour, hunt, email, call and text doctors and PhDs in New York, Washington, Baltimore, Phoenix, Los Angeles, Tel Aviv, Stockholm and Paris. You Google “Alzheimer’s groundbreaking research”. You persist with a crazy lust for answers. Everyone you speak to is exceedingly kind. They have had this conversation many times. You start by saying, almost apologetically, that you want to know what the most promising trials are, where they are taking place, who is in charge. A few years ago, there was a lot of buzz surrounding solanezumab. You ask questions about timeframes, conventional wisdoms, odds and percentages. You lapse, unwittingly, into descriptions of your father, which are really synopses of his curriculum vitae (“then there was his PhD, then med school, then his residency at Mass General”), which are fuelled by a deeply irrational subtext: certainly, you can’t let him fade away.

On Not Becoming My Father, by Michael Chabon, New Yorker

Fifty years on, though my father has long since retired from regular practice both as a doctor and as a father, I’m still chasing after that recipe for life and still, four times a father myself, doing part-time work as a son. At this point, to be honest, being my father’s son is less than a sideline; it’s more like a hobby, one of a number of pastimes acquired early, pursued with intensity, laid aside, and then only intermittently, over the years, resumed—origami, cartooning, model building, being a baseball fan, being a son. I think of my father at least once a day, try (but fail) to call him once a week, and, as required, afford him regular access to his grandchildren. Beyond that, the contours of the job turn vague and history-haunted. Outside the safe zone of our telephone calls, with their set menu of capsule film and book reviews, amateur political punditry, and two-line status reports on the other members of our respective households, the territory of our father-and-son-hood is shadowed by the usual anger, disappointment, and failure, strewn with the bones of old promises and lies.

The Dead Do Not Improve: “The Good Place”’s Divine Justice System, by Dan Hornsby, Los Angeles Review of Books

One of the terrors of damnation is that there is no course correcting. Final damnation is, well, final. The punishment outlasts the crime by an unimaginable margin, and no one gets to repent. In Hell, you know you’ve done wrong but you can do nothing about it, forever. In the Divine Comedy, the damned do glean some facts from the Pilgrim here and there, but, as in the case of Farinata, what they do learn only intensifies their suffering. For Dante, as for much of the Christian tradition, Hell is defined by stasis. Satan is characterized by his stillness, kept stagnant in the middle of a frozen lake at the bottom of creation. Sisyphus doesn’t build a pulley or refine his rock-pushing technique. As the Silver Jews put it in their song, “Tennessee”: “The dead do not improve.”

But in Michael Schur’s series The Good Place, the education of the dead drives the plot.

Wendy Mitchell On Her Extraordinary Alzheimer’s Memoir, by Nicci Gerrard, The Guardian

Mitchell is 61. Three years ago, she was diagnosed with Alzheimer’s; she also has vascular dementia. She is young to have an illness that is associated with age: in the UK, about one in six people over 80 will get dementia. Yet early-onset dementia represents approximately 5% of the 850,000 people living with the condition in the UK, and it may be significantly under-diagnosed. This means that at least 43,000 people of working age have it, some in their 30s and 40s. Mitchell is cruelly unlucky but not unique.

What marks her out, however, is that she has written a book about her experience, making a narrative about the loss of narrative; finding words for the failure of language; giving a voice to emotions that are usually unspoken. Somebody I Used to Know, written with the help of the journalist Anna Wharton, is a lucid, candid and gallant portrayal of what the early stages of dementia feel like, from the days of fog and exhaustion, through the bewilderment of medical examinations and psychological tests, into the certainty and fear of knowing what was wrong – and then into fear’s aftermath, which for her meant finding a new purpose, a way to be optimistic and valuable in the world in the face of her own unravelling. This memoir, with its humour and its sense of resilience, demonstrates how the diagnosis of dementia is not a clear line that a person crosses; they are no different the day after the word is attached to their sense of confusion and the vague but insistent sense that something is wrong than they were the day before. They have an illness for which at the moment there is no cure, but they are not other; they are still one of us. It is the stigma and the loneliness surrounding the disease that turns something that is painfully hard into something that is barely endurable.

‘Every Poem Is Political’: Danez Smith, The YouTube Star Shaking Up Poetry, by Kate Kellaway, The Guardian

If you watch Danez Smith’s poem dear white america on YouTube – where it has racked up more than 300,000 viewings (not the sort of figures poetry usually attracts) – it is easy to see why Smith is becoming a phenomenon. The video is a powerful introduction to the collection Don’t Call Us Dead (a finalist in the US’s National Book award for poetry), which is about to be published in the UK. Smith has a colossal gift for performance. You are moved – shaken – as if you had been involved in an argument you couldn’t win. And, in a sense, if you are white, that describes the position. The poem – set out like prose – is a raging, calculated polemic that needs no critic (though the New Yorker has devoted pages to Smith), and that contains its own commentary. It imagines leaving Earth in search of somewhere black people can uncomplicatedly reside. It builds quickly, turns emotion inside out, presents valediction as protest. Smith has the first and last word, and all those in between.

The Island That Switches Countries Every Six Months, by BBC

For three months, the Spanish and French negotiated the end to their long war on the island, as it was considered neutral territory. Wooden bridges were extended from both sides. The armies stood ready as the negotiations began.

A peace agreement was signed - the Treaty of the Pyrenees. Territory was swapped and the border demarcated. And the deal was sealed with a royal wedding, as the French King Louis XIV married the daughter of the Spanish King Philippe IV.