Julian Barnes - The Only Story (Penguin, 2018) **

"The Only Story" is a story about love, about the love of a 19-year old with a much older woman. The narrator looks back on his life and reminisces about how his 19-year old self navigated this relationship, including dealing with his parents, the tennis club, the husband of his love. 

I am a fan of Julian Barnes, and I normally appreciate his style, his sensitivity and his capacity to make his plot come to life, but somehow I could not relate to any of this in "The Only Story". The narrator is totally uninteresting, and so is his love. I can understand that the narrator takes on a cynical view of his younger self, but still ... I read it and wondered why I should spend time on such uninteresting characters. 

You can't win every time ...

Carlo Rovelli - Helgoland (Allan Lane, 2021) ****

Over the years, I've become a great fan of Italian physicist Carlo Rovelli, whose books on physics are always a joy to read. Rovelli is a great writer too, because he understands the lack of knowledge of his readers, and because he knows the stories behind the great discoveries and debates in physics. "Helgoland" is the name of the tree-less island where Werner Heisenberg retreated at the age of 23 to stop suffering from hay fever, and where he came up with the concept of quantum physics. And through the history of physics, and the relevant moments in the lives of its scientists, Rovelli adds questions of a more fundamental philosophical nature. If all these theories are correct, what does this mean for us? If all matter can be divided and divided and divided until nothing is left but relationships, where does that leave us?  If everything is relative, also to the subjective 'I' that does all the measurement, where does that leave consciousness? 

Despite all the advances made, our reality remains a big mystery. And to Rovelli, that by itself appears to be a joy. 

Tony Tanner - Thomas Pynchon (Methuen, 1982)

As a Pynchon fan, this book is almost compulsory reading. It helps to give some perspectives and interpretations of what is happening in Pynchon's novels. Trust me, it does not offer any clues to fully understand Pynchon, which is not the point, but at least it gives some fresh ideas and background facts that help clarify some things. 

Tanner's analysis dates from 1982, so the novels discussed in this short book, are "V", "The Crying Of Lot 49" and "Gravity's Rainbow". Some of Tanner's insights will make you want to read these novels again. 

Enjoy!

Heidi J. Larson - Stuck (Oxford University Press, 2020) ***½

This book's subtitle is "How Vaccine Rumors Start - And Why They Don't Go Away", and it could not be a more appropriate one to read in these times of covid. Heidi Larson is the person who should know. She is Professor of Anthropology, Risk and Decision Science and Director of the Vaccine Confidence Project at the London School of Hygiene & Tropical Medicine. Her book is not on corona, but about vaccine hesitancy and organised anti-vaccine movements across the globe. 

Because vaccines will always have risks, there will always be rumours, benign or not. The key question is for the scientists and health policy makers to keep the dialogue open, to explain, and to listen to concerns. The old hierarchical structure of educated scientists, doctors and politicians telling people what to do no longer works (if it ever worked). People find their own evidence, meaning that the conversation, the debate should be organised differently. 

Larson gives a sweeping overview of vaccination over the centuries and across the globe, including the devastating impact of religious beliefs (evangelists, islamists, ...) to block vaccination in developing countries. The fact that you vaccinate people who are not ill, and that companies get money for this, and that this is organised by a government you do not really trust, is the perfect cocktail for rebellion. But she also gives examples closer to home, like the measles outbreak in the United States in 2015 among children who had visited Disneyland. Even if the measles vaccine is among the most used and tested around the world, it suffices that small groups of people do not vaccinate to give the virus a chance to regain power. 

Luckily, as we see now in many countries, people have common sense, and the majority of people are willing to be vaccinated voluntarily. It would be good to have her opinion now with the corona virus crisis still dominating our lives after two years of combatting it. 

Yasser Abdel Hafez - The Book Of Safety (Hoopoe, 2013) **½

Having read and appreciated the books of Naguib Mafouz and Nawal El-Sadawi, Yasser Abdel Hafez is the third Egyptian author that I read. In "The Book Of Safety", the narrator works for the government, and interviews prisoners about their activities, including Mustafa Ismail, a university professor turned master thief. The latter also blackmails the people whose houses he breaks into, and has written "The Book Of Safety", a kind of manual for thieves. 

The novel is not bad, but very slow in its progress. There is an insufficient sense of anticipation and tension about how the narrative will enroll. This is not necessary by itself, if the writing itself is strong enough to keep the reader's attention. As it is, the approach and plot are original, but somehow it is not very memorable. I can recommend Mafouz and El-Sadawi. 

Peter Godfrey-Smith - Metazoa - Animal Minds And The Birth Of Consciousness (William Collins, 2020) ****½

When does consciousness arise in animals? As of which point can we say that there is such a thing as consciousness? Zoologist Peter Godfrey-Smith has published books on the fascinating lives of the octopus, but in "Metazoa" he gradually works his way up the food chain to establish the different kinds of knowledge plants, microbes and animals get from the outside world and from themselves. 

Starting with the chemical reactions between cells and their environment (through ion channels), he explains how matter and energy start creating senses and brains: "these arrangements are not the causes of mind, they are minds. Brain processes are not causes of thoughts and experiences; they are thoughts and experiences". Because living things need energy to exist, they are in constant interaction with their environment to pick up signals, and to ingest nutrients. 

He gives a brilliant example of having a basic consciousness and a sense of self. Even the simplest animals have to be able to identify whether what they feel - through antenna, feelers, skin, or other - is the result of a predator touching them, or whether it is the result of their own movement touching something. At this stage the animal can discern between "self" and "other", as a prerequisite for survival. 

Godfrey-Smith is a great narrator, and his personal knowledge of marine biology, and especially on the octopus, is impressive and fascinating. Whether he's writing about corals, shrimp, crabs or other sea creatures, he brings it to a different level than just describing life under water. It is all about our brain, our experience, our sense of self, our mind. 

Joseph Henrich - The WEIRDest People In The World (Allan Lane, 2020) *****

If you did not know, but W.E.I.R.D in the title stands for "Western, Educated, Industrialised, Rich & Democratic". It's the kind of bias that we find in pscyhological studies. Henrich is the chair of the Department of Human Evolutionary Biology at Harvard University. He explores how Western culture developed differently than other cultures, with diverging responses and perspectives on things, but he goes a step further too: by evidence from anthropology, economics, history, religion, law and psychology, he gives a sweeping picture of why the West has become what it is today, how it has evolved, and become dominant across the globe. 

One of the more eye-catching analyses are his statistics on the Catholic church's prohibition of first cousin marriages in Europe as of the fourth Century. This resulted in a seismic shift in village growth, and horizontal mobility. Men had to move to other places in order to find a wife. This led to a more individualistic approach instead of a collective one. It meant that other values became dominant, that commercial exchanges and rational arguments became more important than kinship and generational ownership. That hierarchy of clan elders was replaced by more citizen representation. This simple fact, also led over the longer term to the diminished power of the Church itself on society. Even today, countries with the highest kinship values are often the ones with the lowest levels of democracy. This holds even true in countries like Italy, where high cousing marriages in some provinces in the 20th Century still have effects in lower election participation in the 21st Centruy. Participatory and representative forms of government are the result of societal changes that abolished first cousin marriages. It seems far-fetched at first hearing, yet the evidence and the statistics that Henrich presents are solid and compelling. 

This evolution changed society over centuries and led to the intellectual, technological and political progress we have witnessed in the West. Henrich describes and explains this change. He does not judge or pontificate that the West is best. 

Obviously all this has its effects on policy, and how to address the differences in culture for people living within the same country. Migrations and subcultures require different approaches, and in international politics one has to be aware that what works in some countries, will not necessarily work in others. This is obvious, but Henrich offers us the insights and some of the tools needed to be aware of it and to work with it. 

The book is an eye-opener, and entirely original in its broad scope and synthesis of so many disciplines. 

Martin Amis - Inside Story (Jonathan Cape, 2020) ****

"Inside Story" is not really an autobiography of Martin Amis, even though the non-fiction book is about his life, but then primarily about other people than himself. The main character is his friend and soulmate Christopher Hitchens, who died of pneumonia as a consequence of his oesophageal cancer. Other people who drive the narrative are Amis's father Kingsley, and the authors Saul Bellow and Philip Larkin.

As you can imagine from Amis, the book is extremely well written, often narrated around situations - and like with Knausgaard - the dialogues and minor details are possibly invented to make for more identification with the context. Amis's natural sense of cynicism is omnipresent, but is balanced by and equally deep sense of love and compassion for the people he loves. You can only admire Amis for his incredible patience and dedication to continue to spend time with the dementing Bellow (watching "Pirates Of The Carribean" together), who no longer knew who he was, and the time invested to remain by Hitchen's side till the end. 

In between, Amis comments on life, society, and of course literature. And there are the stories of love and lots of drinks and partying. Amis balances and structures his book with the craftmanship that he uses for his novels. Despite the deep sense of loss, the narrative remains entertaining. 

I admire his candour, his authenticity and the quality of his writing. Even if you're not a fan of Amis, this book is easy to recommend. 

Rebecca Wragg Sykes - Kindred - Neanderthal Live, Love, Death And Art (Bloomsbury, 2020) ****

As archeology evolves, we know more and more about the Neanderthal, who lived next to our human ancestors roughly between 400,000 to 40,000 years ago. Rebecca Wragg Sykes brings them back to life in this wonderfully written book "Kindred". She gives an overview of 160 years of research into this species of hominins part of whome eventually interbred with homo sapiens, and then disappeared from the world. Wragg Sykes gives an overview of the more than 100 archeological sites where remains of Neanderthal were found, reconstructing their tools, their way of life, their hunting, their migrations. They appear to have been much more evolved than generally depicted in less scientific publications. And even more than archeology, genetic research on Neanderthal DNA opens up new ways of identifying them, and understanding our intimate relationship with them. 

While giving a deep view into our common past, highlighting a raw, tough but pristine world of untarnished nature, she also keeps up the mirror of an entire species driven to extinction, as it could well happen with homo sapiens. 

Next to the myriad of scientific factoids and insights into our deep past, many questions remain, and it is fascinating to see how much has been discovered in recent years, making us hope to get even more answers in the years to come. 

Anil Seth - Being You - A New Science Of Consciousness (Faber & Faber, 2021) ****

Anil Seth is Professor of Cognitive and Computational Neuroscience at the University of Sussex. In "Being You", he gives us an update on where cognitive science stands today, trying to unravel how our mind works, and - as the title suggests - what it means to have the impression that you exist as a single conscious being. He starts with the physiology of our brains, and he explains how consciousness can be measured, and how current measuring systems are used to determine whether patients in a coma are in a permanent vegetative state or not. He expands on how our perceptions are formed, often based on a blueprint that we have on the world around us. Even if he goes very far in his description that our reality appears to be a "controlled hallucination". Granted, our brain does create perceptions that are not always correct, and there are schemata in our minds that help form our perceptions, but if I kick a ball to you and you kick it back, there must be some objective reality to make the interaction possible. Another element that I think is insufficiently explained, is the power of emotions to create a personal narrative, and hence to determine levels of consciousness. Many of the perception and logic of our brain can be replicated in AI and machine learning, but there is only one thing that will give any "self" the energy to think, infer, perceive, deduct and act ... and that's the hungry, lustful, fearful, emotional self that makes things move for the self. In short, you need a body to be fully conscious.  Seth does not sufficiently explore this aspect, as if we are all rational beings. 

Despite this remaining questions, it is one of the clearest and most comprehensive books on consciousness that I have read in the past years. 

Michio Kaku - The God Equation - The Quest For A Theory Of Everything (Allen Lane, 2021) ****

Michio Kaku is professor of physics at the City University of New York, and one of the co-founders of the string field theory in theoretical physics. In "The God Equation", he describes the wet dream or the holy grail of all theoretical physicists: to find a unifying theory that combines quantum physics with Einstein's relativity theory and other astronomical theories, so that all the forces of the universe can be explained by one comprehensive set of rules. 

Kaku is a wonderful writer, who takes even non-physicists like myself by the hand to introduce them to the weird world of modern day physics. The strength of his narrative is that he also talks about the people, about how for instance Heisenberg and Pauli differed in their opinion from Niels Bohr. "After his talk (at Columbia University in 1958), Bohr stood up and said: 'We in the back are convinced your theory is crazy. What divides us is whether your theory is crazy enough'". It is fascinating reading, and one of the many popular science books I have read on physics, but it remains totally incomprehensible. It is hard to imagine what some of the theories may actually mean. What is a universe with 11 dimensions? What does it mean that there are multiple universes? And will we ever reach them through wormholes? 

In the end, the questions remain. But the journey to find the answers is by itself fascinating. 

Ronald F. Inglehart - Cultural Evolution (Cambridge University Press, 2018) ***½

In May of this year, professor Ronald F. Inglehart passed away. "Cultural Evolution" is his last book, a sweeping overview of his "World Values Survey" that he founded and that gives insights into the values of people in more than 100 countries over several decades, and often even more. 

In the 70s he wrote "The Silent Revolution" about the intergenerational change of values between parents and their children. The data in this book clearly show that people's values are largely shaped by their economic situation. People who live in survival mode, will be more focused on their in-group, more nationalist and more intolerant to other groups. People who do not live in a survival mode, have a more tolerant view on other people. Inglehart looks at intergenerational differences, democratic differences (such as the possibility for 'Self Expression'). He analyses religion and its impact on values, the different situation of ex-communist countries with Latin America, Asia and the Middle East. He also sees income inequality in countries such as the United States and the United Kingdom as some of the reasons for the rise in populism and intolerance. The evolution is not linear but evolves in jumps. 

The great value of this book is also somehow its weakness: there is a graph on every page, with fascinating differences of how countries score on different values based on their economic, democratic or religious situation, but at the same time this somehow does not make for fluent reading. Nevertheless, the book is hopeful for humanity. We can only hope that the trends towards more democracy and more equality will continue for all of us. 

Brian Clegg - Dark Matter & Dark Energy (Icon Books, 2019) ***

If there's anything enigmatic in moder physics, it's the nature of dark matter and dark energy, both the topic of this book by science writer Brian Clegg. 

The book ends with the following sentence: "It might seem that as this book draws to a close it has been a study of epic failure. We still don't know what dark matter is or even if it exists. We still don't know what dark energy is, and the cosmological constant is a factor of 10¹²⁰ away from prediction. We are, appropriately, still in the dark". After having explained all the current theories about dark matter and dark energy, we have to concede that there is a lot we do not know yet. And in a way that's a delight. With the speed of scientific development of the last century, we can only hope to get a better understanding about the great mysteries of our universe (and other universes?). 

An insightful, accessible and humble book. 

Ocean Vuong - On Earth We're Briefly Gorgeous (Penguin, 2019) **

One more novel I did not finish. It starts quite well. Then it becomes boring. Not original enough. Not enough unexpected angles. Not enough narrative power. Too many emotional and psychological digging and not enough action or structural tensions. And maybe it's a personal thing too. As a heterosexual man, I find it extremely difficult to put myself in the position of a gay lead character who has feelings for another man. Somehow it just does not work. And the writing was not strong enough to overcome that hurdle. 

Denis Johnson - The Largesse Of The Sea Maiden (Vintage, 2018) *

I did read this book. I am sure I did. I have it now in my hands, and I do not remember what it's about, nor whether it was any good. The fact that I do not remember anything about it, means that 

1. I must be wrong and I never read it in the first place or 
2. I read it but forgot it completely because it was not memorable at all, to the extent of having been wiped from my memory, if it ever got into it. 

But now I can exclude the first option. The book has been read, considering its physical state, and it must have been read by me, because my wife always writes her name in any book she finishes reading, and this book has clearly not been read by her. 

So be it. 

Guillaume Tarche - Steve Lacy - Unfinished (Lenka Lente, 2021)

What a pleasure to browse through this book on Steve Lacy. In over 460 pages it gives testimonials - and even essays - by musicians who worked with Lacy in various capacities in his life. It's written in various languages: primarily English (70% according to the publisher), French (25%) and Italian (5%). Next to testimonials it offers some interesting pictures, factoids, sheet music and even an overview of all albums that interpret music by Lacy. 

The texts and testimonials, sometimes short, some very long are by Steve Adams, Irene Aebi, Guillaume Belhomme, Etienne Brunet, Frank Carlberg, Kent Carter, Andrea Centazzo, Allan Chase, Alvin Curran, Martin Davidson, Jean Derome, Jorrit Dijkstra, Jean-Marc Foussat, Christoph Gallio, Ben Goldberg, Guillermo Gregorio, Phillip Johnston, Peter Katz, Suzanna Klintcharova, Gilles Laheurte, Vincent Lainé, Pablo Ledesma, Urs Leimgruber, Dave Liebman, James Lindbloom, Giancarlo nino Locatelli, Michala Marcus, Gianni Mimmo, Uwe Oberg, Roberto Ottaviano, Evan Parker, Jacques Ponzio, Jon Raskin, P.-L. Renou, Patrice Roussel, Bill Shoemaker, Josh Sinton, Bruno Tocanne, Jason Weiss, Elsa Wolliaston and Seymour Wright.

The book is not intended to be read in one go, but it's a great publication for some short reading bouts every day, full of personal anecdotes, little stories but also insights into Lacy the composer, the soprano player, the songwriter, and also the person, his dedication and vision on music. 

With humble honesty German pianist Uwe Oberg's first paragraph reflects what was also my first impression of Lacy: "I didn't catch the spirit of their music. I found Lacy's playing cool and reserved, austere, maybe not fast enough. Too little drama, not enough dynamics. And merely soprano saxophone. I was 23 and had never heard someone play like Lacy". Obviously that changed quickly, and he gives interesting views of what it means to play Lacy on the piano, how structure, themes and improvisation so unique to the saxophonist remain intact yet open possibilities for interpreters. He writes about Lacy Pool, his own tribute band, ending his text with the words: "I love to play Lacy because of the intrinsic logic of his music, the beauty of his lines, the vibrant radiance of his sound, his awareness for tradition, his eagerness to experience new things. And of course the unconditional freedom his music exudes". Oberg, like me, is no longer 23, and our tastes have clearly changed in the same direction. 

Canadian saxophonist Jean Derôme explains how he went to a music summer camp in France as a 22-year old, where Lacy was one of the teachers, and receiving Lacy's note books for the day with his handwritten music, each item dedicated to another artist, with a picture attached. The young Derôme ran to the nearest copy shop to copy the books, as a basis to start imitating his great example. Today, Derôme has his own Lacy project, called "Somebody Special", which released an album two years ago with Lacy compositions and songs. 

Dutch saxophonist Jorrit Dijkstra tells about how he received lessons from Lacy in Boston, and how the master started playing "raindrop sounds" on his horn, while watching the rain outside. Dijkstra asked why he played these particular pitches. "He answered, a bit mysteriously, 'because they sound like the rain'. I'm not sure if he had another secret theoretical explanation, but I immediately agreed that this scale ressembled the melancholic, droopy feeling of being in a rainstorm." Dijkstra revels in Lacy's compositional talent ("not just nice tunes with a cool harmony, or vehicles for blowing"), offering deep insights in some Lacy compositions such as "Existence". He also mentions that when he visited Lacy's widow, the singer Irene Aebi, she gave him scans of the 50-odd composition notebooks that Lacy penned. All the originals are now available for consultation at the Library of Congress in Washington, DC. 

In a very long essay, French producer Vincent Lainé gives a deep analysis of Lacy's music (unfortunately for many of our readers it is in French) in which he mentions an interview with Lacy by Philippe Carles, "qui lui demande à quoi il pense quand il joue - un paysage, une femme ou des accords - le saxophoniste répond: "Non, je ne pense jamais ni aux accords, ni au changements d'accords. Jamais à ce genre de choses. En fait, je ne pense pas en quoi que ce soit. J'essaye seulement de suivre la musique, de rester avec elle, de ne pas la perdre de vue. Si vous la perdez, vous êtes dans le pétrin, vous en faites des gâchis, mais si vous ne la perdez pas, c'est parfait" ("who asks him what he thinks of when he plays - a landscape, a woman or chords - the saxophonist replies: "No, I never think of chords or chord changes. Never of that sort of thing. I don't think about anything at all. I'm just trying to follow the music, to stay with it, not to lose sight of it. If you lose it, you're in trouble, you mess it up, but if you don't lose her, that's perfect"). 

He also mentions the incredible amount of time Lacy spent on refining his music: "Le premier morceau composé du cycle Tao est 'The Way', en 1967. 'The Breath' suivra en 1969 et les autres l'année suivante. Le cycle est enregistré en intégralité en 1971, mais sans paroles, comme l'indique sans ambages la pochette de l'album Wordless. Ce n'est qu'en 1979 qu'il est enregistré en version vocale, soit '20 ans pour lire six poèmes'. ("The first piece of the Tao cycle is 'The Way', composed in 1967. 'The Breath' is from 1969 and the other ones the following year. The cycle is recorded in its entirety in 1971, but without lyrics, as indicated in the liner notes of the album Wordless. It is only in 1979 that it is recorded in vocal version, or to put it differently, it took him '20 years to read six poems')

Swiss saxophonist Urs Leimgruber writes: "Steve was not only a musician, he was a real artist and creator. He had a totally open mind toward any form of music, visuals, film, literature, dance. His definition of jazz: "We want to play like that, never mind the others, we want to play our own way - it's partisan music - we are the partisans of music"". 

Italian percussionist Andrea Centazzo mentions that "in this horrible pandemic 2020, sitting at home without gigs, I had the opportunity to go over about 300 tapes (!!!) which I had in storage without labels, being a total disaster at archiving my work. And suprise! I found some recordings left over from the duo and trio sessions! Once again, restoring the sound, I got enough material to release my seventh album with Steve, entitled Scraps". Who knows what more will turn up from other sources. 

It's impossible even to capture the wealth of information and the depth of the insights you receive here from many people who knew Lacy personally or who dug deep into his music, his philosophy, his admiration for Monk, and so much more. One of the fun aspect of this book is the enthusiasm with which it is written, as well as the creative angles used by some musicians to capture Lacy's essence. One nice example is Giancarlo nino Locatelli who writes a number of short poetic lines about Lacy, mentioning his last words to visitors at the hospital: 'Drop the bullshit and keep the tempo'. 

The few examples given above demonstrate that Lacy's legacy is still very much alive, and will continue to inspire and offer ingredients for today's music. 

You can order directly from the publishing company. 

A must-have for all fans of modern music. 

This is not the first book written about Steve Lacy.  Jason Weiss published "Steve Lacy: Conversations" in 2006, a collection of 34 articles and texts written about Lacy during his life. 

Lynn Formesyn - Zinvol Ziek (Lannoo, 2021)

Een fris van de lever boek over chronisch ziek zijn. Over wat het doet met een mens en met het jonge gezin. Over wat het betekent voor het werk en de arbeidsongeschiktheid. Ze heeft het over onbegrip en warmte, over de worsteling met idiote regeltjes en met menselijke steun, de momenten van hoop en de momenten van ontmoediging. De herkenbare momenten van vertwijfeling en het gereduceerd worden tot je ziekte. De soms domme vragen en commentaren, vaak goedbedoeld maar onhandig gebracht. We hebben het als patiënten allemaal wel meegemaakt.

Reumapatiënte Lynn Formesyn - en stafmedewerker bij GRIP - biedt een wat meer tegendraadse en zeker ook constructieve visie op hoe ziekte wel kan worden aangewend om de zaken anders aan te pakken. En dit in een prachtig, levendig en creatief Nederlands. Ze noemt zichzelf een "mankemens", als alternatief voor onze gewone woorden voor ziek zijn. Ze spreekt van "pijnvenijn" en ze heeft zo nog meer nieuwe woorden om haar gevoelens en ideeën op papier te zetten, naast liedjestesksten en gedichten om moeilijk te vatten ervaringen iets reëler te maken.

Ziek zijn wordt zinvol wanneer je die ziekte bespreekbaar maakt, weghaalt van tussen de vier muren van de eigen ervaring, de vooroordelen en de taboes. Ze laat lotgenoten aan het woord, patiënten met hun eigen verhaal, hun eigen beleving, hun eigen visie op ziek zijn ook. Maar ook andere deskundigen worden geïnterviewd: psychiater Dirk De Wachter, gezondheidspsycholoog Manu Keirse, CM voorzitter Luc Van Gorp, Vooruit-cabinetard Ri De Ridder, en nog veel anderen.

Ze heeft ook voor de gelegenheid alle Vlaamse partijen geïnterviewd (van de Radicaal-linksen tot de Radicaal-rechtsen), en presenteert - opnieuw creatief - hun antwoorden anoniem met een quiz over wie wat heeft gezegd (en mijn score was bijna perfect!).

Ze geeft een snel overzicht van gezondheidseconomie en stoot snel op het arbitraire systeem van Quality Adjusted Life Years (QALYs) die wij hanteren (wat overigens in Duitsland als onethisch wordt beschouwd). Ze botst op de regeltjes, de systeempjes en de nodeloze administratie. Ja, het is nog altijd zo dat chronische patiënten met een ziekte waar geen remedie voor bestaat nog halfjaarlijks of jaarlijks een attest moeten afleveren na medisch onderzoek dat ze nog altijd ziek zijn.

De grote vraag is ook mijn grote vraag: waarom wordt de expertise van al die patiënten niet gebruikt om het beleid te veranderen, om per ziekte het zorgtraject sneller, doeltreffender en efficiënter te maken? Iedereen heeft de mond vol van patiëntenrechten en patiëntenparticipatie, maar dat blijft in de praktijk jammer genoeg nog altijd dode letter.

Patiënten moeten de middelen en de opleiding krijgen om mondiger te worden, om zich te organiseren en om hun gemeenschap te kunnen vertegenwoordigen naar de buitenwereld toe. We gaan er te veel te snel van uit dat overheid en medische gemeenschap alle antwoorden hebben. Die hebben ze jammer genoeg niet. Ze hebben slechts een klein fragmentarisch beeld van wat het echt betekent om ziek te zijn. Heel veel patiënten zouden kunnen genieten van een veel betere levenskwaliteit als hun stem systematisch werd gehoord en hun ideeën geïntegreerd in de medische praktijk of in aangepaste beleidsmaatregelen. In Scandinavië en in Nederland krijgen alle patiëntenverenigingen subsidies, en worden ze systematisch formeel geconsulteerd bij beslissingen per ziekte. Voor elke ziekte hebben we professioneel gerunde patiëntenorganisaties nodig. Zij alleen hebben de nodige collectieve ervaring en kennis om de beste zorgtrajecten uit te tekenen.

Je hoeft geen reumapatiënt te zijn om dit boek goed te vinden. Vanuit de gedrevenheid van haar eigen ervaring, de bevraging van de experts en de bijkomende lectuur, heeft Lynn Formesyn een open vraag gesteld aan al wie met gezondheid bezig is: kan het even anders? Kan het met meer inspraak? Kan het met meer waardigheid? Kan het met wat betere omkadering? Ze heeft niet alle antwoorden, maar dat siert haar, net als het feit dat ze anderen het laatste woord geeft.

Ze eindigt met de volgende vraag aan andere patiënten: "Als ik luidop mag dromen, hoop ik dat Zinvol Ziek mensen zal prikkelen om bepaalde topics zelf verder te onderzoeken, maar ook om openhartig(er) te praten over alles wat mankementen in al hun vormen met iemand kunnen doen".

We hopen het met haar. Een sterke aanrader voor iedereen die met gezondheid en gezondheidsbeleid bezig is.

Het boek kan hier worden besteld.

Francesca Stavrakopoulou - God - An Anatomy (Picador, 2021) *****

What a wonderful book! Its author, Francesca Stavrakopoulou is a British biblical scholar and broadcaster. She is currently Professor of Hebrew Bible and Ancient Religion at the University of Exeter in the UK. 

The book is wonderful for many reasons. First, its structure is quite exceptional for a book on religion, in that it uses the human anatomy from feet to head as the structure around which to describe the physical body of the biblical god. Second, it expands throughout ancient myths and legends what each anatomical element means and has meant, going back to Sumer, Mesopotamia, ancient Egypt and Greece, tracing back why some - often obscure - parts and verses of the bible say what they say. It helps to interpret sometimes post-dated metaphorical interpretations back to their physical origins. Third, Stavrakopoulou writes with passion, fluently, accessibly, narrating her story of the bible in such a way that the readers remains captivated by the often minute details that substantiate her claims. Fourth, because she is herself not a religious person, she has nothing to defend, just to explore, unhindred by religious canons and interpretations. Fifth, it is fun to read, with even funny moments. 

Here is just one example of her passionate writing. 

You could argue that using God's anatomy to describe him, is a very artificial way to describe Yahweh the god of judaism and christianity, and in a way it is, of course, with some aspects coming back in the various chapters, because god is much more than just an assembly of organs and limbs, but still, because the physical nature of the god - in contrast to the more modern abstract interpretations of his being - was absolutely essential to the original writers of the bible. 

The book is grand in its scope, erudite in its knowledge, brilliant in its delivery, and entertaining to read. What more do you need? 

Fiona Mozley - Elmet (John Murray, 2018) ***½

"Elmet" is the story of a boy and a girl who live in the woods, outside society, in the sometimes presence of a father who lives from poaching, boxing and day jobs. Soon they are confronted with the nastiness of those in power, with property and money, and they are sucked up in a life they do not want. 

The brutal, raw and pure power of the father, almost stripped to a basic human form of fatherly love, and violent emotions, who does not understand property deeds, bureaucracy and the subtleties of legislation and regulations, is in stark contrast to the hypocritical, sly and evil attitude of the world around them. 

Despite this almost black & white opposition of positions and characters, Mozley manages to turn the story into a very likeable and compelling narrative, in which all characters come to life in a credible and human form, with the children somehow caught in the middle, full of love for their father, but uncertain how they fit in. 

A memorable book. 
 

Tim Winton - That Eye The Sky (Penguin, 1986) ***

 I have read several novels by Tim Winton that I really appreciated, and so I read this one too. It is the story of a young boy, Ort Flack, whose father becomes the victim of a car accident, and who now lives in their house, paralysed, and not aware of what's happening to him. The family gets the unexpected support from a religious man who helps out and moves into the house. From the perspective of the young man, the situation is both incomprehensible as welcome. He no longer understands his mother, nor his grandmother, who increasingly withdraws within herself, and least of all his older sister who lives in a permanent state of anger. 

As usual, Winton's writing is strong, and he manages to create a very sophisticated novel full of ambiguity and shifting loyalties. 

If you're interested, I can easily recommend "Cloud Street", "Breath" and "Dirt Music" by Winton.