Another medical classic:  “The Story of San Michele” by Axel Munthe

Searching for another article I stumbled across my review of this classic medical book and thought that I’d share it again.

Next time you see a patient with insomnia, rather than prescribe a hypnotic recommend that he or she writes a book. The result might be sleep for the author and a masterpiece. Henry James gave that advice to Axel Munthe; it worked, and we now have an exquisite book, The Story of San Michele, that has been translated into 45 languages and was once required reading for medical students.

The book is a mixture of autobiography and fantasy, with the boundaries between the two delightfully blurred. (Most autobiographies are largely fantasy anyway, but few are so clear about it.) Munthe, a Swede, was born in 1857, graduated in medicine in Paris, worked in several countries, and—speaking five languages fluently—managed to get to know almost everybody of consequence in Europe.

The defining moment in his life was when he arrived in Capri in 1874, climbed the 777 Phoenician steps to Anacapri, saw the ruins of Tiberius’s palace and the chapel of San Michele, looked across the Bay of Naples, and struck a bargain with “a tall figure wrapped in a rich mantle.” In exchange for having a house in “the most beautiful place in the world” he would be “a might-have-been, a failure.” Munthe feared that this would take away “all that is worth living for,” but the stranger replied: “You are mistaken, I give you all that is worth living for.” Munthe also asks for pity because without it he could not be a doctor. The stranger grants his wish but says, “You would have fared much better without it.” Munthe built his villa and lived there for decades together with the animals he loved, including dogs, an owl, and a baboon.

Sam Michele 1

The lyrical book is full of medical interest (plus much more), but perhaps most fascinating are his descriptions of medical extremes. While in Lapland Munthe read of a cholera outbreak in Naples and at once travelled the 27 hours to the nearest railway station and then across Europe. “Trembling with fear,” he worked not in the hospital but among the poor. “If only their agony was not so long, so terrible. There they were lying for hours, for days in stadium algidum, cold as corpses, with wide open eyes and wide open mouths, to all appearances dead and yet still alive.”

In Paris, in contrast, Charcot’s “le malade au petit papier” was the commonest diagnosis, and “Appendicitis was just then much in demand among better class people on the look out for a complaint.” But when American surgeons “started on a campaign to cut out every appendix,” a new disease was needed. “The faculty was up to the mark” and invented colitis: “It was a neat complaint, safe from the surgeon’s knife, always at hand when wanted, suitable to everybody’s taste.” Munthe diagnosed the condition in a countess (who then thought it wise to sleep in a separate room from the count) and a marquise, and soon “Colitis spread like wildfire all over Paris.”

San Michele is open to the public, and to read the book in its garden is a treat of the first order.

You have a duty to complain

I’m a great believer in complaints, recognising the truth that “every defect is a treasure.” Today I’ve complained to Lambeth Council and Virgin Media. Neither organisation will shift a millimetre nor be at all bothered, but they will have to respond–and writing down my complaint gives me some release. I argued five years ago in the BMJ that we have a duty to complain, and below is that blog again, together with my complaint to Virgin Media, which is mainly complaining about the difficulty of complaining. http://blogs.bmj.com/bmj/2012/02/15/richard-smith-you-have-a-duty-to-complain/

 

Have you made a complaint recently? I don’t mean monaning to your partner about the weather or your neighbour’s barking dog but a written, formal complaint, If you haven’t, you should—because we are relying on sharp elbowed, middle class people like you to keep up and even improve the performance of everything—the NHS, the BMA, Liverpool Football Team, the WHO, the BMJ, your local library, and the weather.

I’ve been meaning to write this blog for ages because I fear that complaining doesn’t get the attention and praise it deserves. “Disgusted of Tonbridge Wells” is a figure of fun not reverence.

My latest complaint—now an hour old—is to Royal Mail. I work from home and was pleased to discover that I could print postage from the Royal Mail website, so avoiding the long queues at the post office (must get round to complaining about that). It’s a horrible, unfriendly website, and I got off to a shaky start by discovering that with my usual browser, Google Chrome, I could pay for the postage but not print it. I complained about that and switched to using Internet Explorer. Things then went well until just before Christmas when the whole site went haywire. I didn’t complain then, but it’s now been down for about two months—and so I broke off from my work of global significance to make a complaint.

In my time I’ve complained to the NHS, British Airways, GNER (maybe if I’d complained more often and more loudly they’d still be in business), Lambeth Council, Virgin Media, and various food producers. As students we complained that we weren’t “completely satisfied” by Heinz tinned steamed puddings on the philosophical grounds that “complete satisfaction” was impossible and were sent two new tins. We also thought it hilarious to complain to a soup manufacturer that we’d found a crab’s claw in our tin of crab bisque when we’d actually got the claw in a Chinese meal. Again we were sent two tins.

My complaint to the NHS had to do with waiting two hours with my mother to have her hip checked after hip replacement, a check that when it eventually happened took just a minute or so. I tried to be positive and pointed out that many hospitals didn’t have such routine follow up, that it could be done by phone, and perhaps wasn’t necessary at all. After much confusion I did get a response from the consultant, saying that they would discuss my suggestion. Whether anything changed I don’t know, but I’d like to know. Perhaps I should complain that I wasn’t told the outcome.

We may be slow to complain because we think that we don’t want people complaining about us. We are brought up to see complaints as bad things, and it was one of the revelations of my life when—at about age 35—I first heard the idea that complaints are good things. “Every defect is a treasure” is one of the mantras of continuous quality improvement—because it provides a direct route to doing better. And for everybody who takes the trouble to write and complain there are probably 500 people thinking the same but who hadn’t complained in writing.

When I was the editor of the BMJ we thus assiduously collected, analysed, discussed, and responded to complaints. I can remember jogging on a beach and somebody telling me that “the BMJ is rubbish because it doesn’t publish enough randomised trials.” That complaint went into our collection. The commonest complaint we received was “the main trouble with the BMJ is that there’s too much of it. Can’t you close down for a few weeks and give us all a rest?”

Some editors thought it unbalanced that we collected complaints and not compliments, so we began to collect those to. But compliments are dangerous—because they are less likely to be true than complaints, encourage complacency, and don’t provide a clear way to improve.

So it is your civic duty to complain. See if you can manage three before the end of the week. Once you get started it’s easy.

 

Dear Virgin Media,

I have several complaints about Virgin Media.

  1. It’s impossible to complain online. It should be easy to complain, but it isn’t.
  2. You provide a telephone number to which to make a complaint, but when you ring the number there is no option to make a complaint. I tried and eventually succeeded in speaking to a person, who gave me the address to which to complain, but before that I ended up at several dead ends.
  3. Your website does not give an address to which to make a complaint. It should. (On looking for the address of CISAS, I discovered that you do give an address for complaints in a PDF. So now my complaint is that it’s not prominent on the website.)
  4. Now to substance of my first complaint. My broadband regularly goes down–for a few minutes and sometimes longer almost every day. This is annoying because I work from home.
  5. When we watch television programmes on catch up they a) usually take a very long time to appear and b) regularly (perhaps one in four times) go down, causing us to have to start again with connecting to the programme.

You will probably wonder why I don’t switch to another provider. One day I probably will, but I fear the hassle.

I’d like you to fix all these things, and I’d like you to write to me giving responses. I don’t want somebody to ring me.

Yours sincerely

Dr Richard Smith CBE

Copy to: CISAS, 70 Fleet Street, London EC4Y 1EU

Complaint

Quotes from Les Misérables VI: she had a soul that was both rose-pink and scarlet, hotter than flame and cooler than the dawn.

‘Jean Valjean, my brother, you no longer belong to what is evil but to what is good. I have bought your soul to save it from black thoughts and the spirit of perdition, and I give it to God.’

Did any voice whisper to him that he was at a turning-point in his life, that henceforth there could be no middle way for him, that he must become either the best of men or the worst, rise even higher than the bishop himself or sink lower than the felon, reach supreme heights of goodness or become a monster of depravity?

Do you know who Aspasia was, ladies? She lived in an age when women were not supposed to possess souls, yet she had a soul that was both rose-pink and scarlet, hotter than flame and cooler than the dawn. She encompassed the two extremities of woman, she was the prostitute goddess, part Socrates, part Manon Lescaut. She was created for the service of Prometheus, should he desire a wanton.’

Quotes from Les Misérables VI: she had a soul that was both rose-pink and scarlet, hotter than flame and cooler than the dawn.

No sooner lost than loved. That’s how things are.’

The Spinoza Challenge

Will Durant in his beautifully written and highly readable book “The Story of Philosophy” issues a challenge–to read and make sense of Spinoza’s book “Ethics,” which Durant regards as “the most precious production in modern philosophy.” You will need to read the book bite by bite and at least twice. If you succeed “you will remain forever a lover of philosophy.”

The challenge scares me: my brain is not big enough or just too decayed. But I feel I ought to have a go, and I have taken the first step of ordering a copy. If you rise to the challenge please let me know how you get on; or maybe you have already mastered the work and can report back.

Below is Durant’s challenge, which comes in the preface to the second edition; and below that is the section where he introduces his writing about the book.

Spinoza is not to be read, he is to be studied; you must approach him as you would approach Euclid, recognizing that in these brief two hundred pages a man has written down his lifetime’s thought with stoic sculptory of everything superfluous. Do not think to find its core by running over it rapidly . . . . Read the book not all at once, but in small portions at many sittings. And having finished it, consider that you have but begun to understand it. Read then some commentary, like Pollock’s Spinoza, or Martineau’s Study of Spinoza, or, better, both. Finally, read the Ethics again; it will be a new book to you. When you have finished it a second  time you will remain forever a lover of philosophy.

The most precious production in modern philosophy is cast into geometrical form, to make the thought Euclideanly clear; but the result is a laconic obscurity in which every line requires a Talmud of commentary. The Scholastics had formulated their thought so, but never so pithily; and they had been helped to clarity by their fore-ordained conclusions. Descartes had suggested that philosophy could not be exact until it expressed itself in the forms of mathematics; but he had never grappled with his own ideal. Spinoza came to the suggestion with a mind trained in mathematics as the very basis of all rigorous scientific procedure, and impressed with the achievements of Copernicus, Kepler and Galileo. To our more loosely textured minds the result is an exhausting concentration of both matter and form; and we are tempted to console ourselves by denouncing this philosophic geometry as an artificial chess game of thought in which axioms, definitions, theorems and proofs, are manipulated like kings and bishops, knights and pawns; a logical solitaire invented to solace Spinoza’s loneliness. Order is against the grain of our minds; we prefer to follow the straggling lines of fantasy, and to weave our philosophy precariously out of our dreams. But Spinoza had but one compelling desire—to reduce the intolerable chaos of the world to unity and order. He had the northern hunger for truth rather than the southern lust for beauty; the artist in him was purely an architect, building a system of thought to perfect symmetry and form.

Spinoza1

Loneliness: part of being human but one of our greatest scourges

In the past few days I’ve read how Picasso, Spinoza, and Bertrand Russell all suffered terribly from loneliness. All were geniuses and had many friends. I’ve never experienced acute loneliness and have mostly enjoyed being alone, but it’s a scourge that I fear more than death. Reading about loneliness in the trio of geniuses has prompted me to find and post below a blog I wrote on loneliness in the BMJ in 2015. http://blogs.bmj.com/bmj/2015/01/27/richard-smith-loneliness-medicine/ Oddly enough the main “inspiration” (that doesn’t seem the right word) for the piece was two paragraphs I read in a not awfully good novel. I can’t think of many other words that have affected me so powerfully.

 

According to the Canadian psychologist Ami Rokach who has long studied it, “acute loneliness is a terrorising pain, an agonising and frightening experience that leaves a person vulnerable, shaken, and often wounded.” In our world of anomie and divorce and where medicine has extended life beyond usefulness, loneliness is one of the main causes of suffering, and it’s a cause where medicine has nothing to offer.

I haven’t ever experienced what Rokach describes, although he points out that “loneliness is as natural and integral a part of being human as are joy, hunger, and self actualisation. Humans are born alone, they experience the terror of loneliness in death, and often much loneliness in between.” One reason I haven’t experienced such loneliness is that I have rarely been alone, although the relationship between loneliness and being alone is complicated. You can be lonely in a crowd, and be alone and experience nothing but joy and fulfilment.

Two things have alerted me to the desolation of loneliness: an account in a novel, and my mother’s diaries. The account in Zoë Heller’s Notes on a Scandal came first. It’s a novel which tries—and almost succeeds—to give a credible account of a female teacher in her late 30s having an affair with a 15 year old schoolboy. The story is told by an older female teacher, who herself seems to love the younger teacher. The passage in the book that I found the most powerful described not the affair, but the loneliness of the older teacher:

“And then, every once in a while, you wake up and gaze out of the window at another bloody daybreak, and think, I cannot do this anymore. I cannot pull myself together again and spend the next fifteen hours of wakefulness fending off the fact of my own misery. . .

About the drip drip of long haul, no end in sight solitude, they know nothing. They don’t know what it is to construct an entire weekend around a trip to the launderette. Or to sit in a darkened flat on Halloween night, because you can’t bear to express your bleak evening to a crowd of jeering trick or treaters. Or to have the librarian smile pityingly and say, ‘Goodness, you’re a quick reader!’ when you bring back seven books, read from cover to cover, a week after taking them out. They don’t know what it is like to be so chronically untouched that the accidental brush of a bus conductor’s hand on your shoulder sends a jolt of longing straight to your groin. I have sat on park benches and tubes and schoolroom chairs, feeling the great store of unused, objectless love sitting in my belly like a stone until I was sure I would cry out and fall, flailing, to the ground.”

Days later I read of my mother’s loneliness. The entries in her diary were written after my father died. She lived alone, although somebody visited most days, and was aware that she was beginning to dement, as her mother had done before her. She hid her loneliness from others, and I feel badly that I didn’t detect the extent of her pain.

“Wednesday 2 April
Brian [my brother] left—leaves a huge gap and I try to keep my spirits up, but very low. He’s marvellous support.

Thursday 3 May

I really feel hugely miserable and lost. I miss Brian so much—I know this is silly and wrong—I’ve lived alone now for some time and must make an effort to recover my balance.

Friday 13 July
Brian here few days, which is wonderful, but awful when he goes.”

My mother now lives in a nursing home and seems cheerful most of the time. She still uses complex language and has a strong sense of humour. We laugh much of the time we are together each week, but, although she denies it, she is still perhaps lonely. A clue is that sometimes she doesn’t like me to go.

I set out to try and understand more about loneliness, and I found much more help in literature and quotes than from medical journals. Loneliness is not, thank goodness, in DSM V, and it seems to belong more to psychologists and nurses than to doctors, although it must be something that is present in many of the people seen by general practitioners and geriatricians.

“The most terrible poverty is loneliness, and the feeling of being unloved,” said Mother Teresa.

“God, but life is loneliness,” wrote Sylvia Plath in her journal, “despite all the opiates, despite the shrill tinsel gaiety of ‘parties’ with no purpose, despite the false grinning faces we all wear. And when at last you find someone to whom you feel you can pour out your soul, you stop in shock at the words you utter—they are so rusty, so ugly, so meaningless and feeble from being kept in the small cramped dark inside you so long. Yes, there is joy, fulfilment, and companionship—but the loneliness of the soul in its appalling self-consciousness is horrible and overpowering.”

“When you have nobody you can make a cup of tea for, when nobody needs you, that’s when I think life is over,” said Audrey Hepburn.

The best account I could find of loneliness in a health publication was from Colin Killeen, a charge nurse in an elderly unit in Salford. It is, he argues, a modern epidemic, but one that is largely unrecognised because it is taboo to admit to loneliness. And it is not easy to define: Killeen suggests that it lies on a spectrum that runs from the very positive connectedness through solitude, aloneness, social isolation to loneliness, and then beyond to alienation or estrangement. There is less choice at the negative end. People choose connectedness and solitude, whereas loneliness is imposed upon them.

Loneliness is associated with low self esteem, depression, shyness, anxiety, greater neuroticism and lower extroversion, less assertion and more self consciousness, cognitive impairment, and lower educational levels. It is most common in the elderly, the bereaved, adolescents, and, so some studies say, in females.

Suicide is one consequence. As Killeen puts it: “There is nobody to miss them so they may as well kill themselves and end their misery . . . what is the point in staying alive just to feel unending pain and distress.”

People may treat themselves through overeating and using drugs and alcohol. My mother began to drink, which it took us some time to discover. By the time she entered the nursing home she was drinking two and sometimes three bottles of wine a day. Now she drinks little alcohol.

Modern medicine has no treatment for loneliness. “Nurses,” argues Killeen, “are being unrealistic if they think that they can ‘prevent’ or ‘cure’ this distressing condition.” It is, he and others argue, part of being human: “No matter who the individual is, or whatever the circumstances are, people will always be lonely.” Killeen’s prescription is a more caring society, something that it is beyond doctors and nurses to create.

Writers and researchers mostly describe and define loneliness, and write about its associations and consequences. They are largely blank on treatments, but I found this from David Foster Wallace, the American author who killed himself aged 46. “Fiction, poetry, music, really deep serious sex, and, in various ways, religion—these are the places (for me) where loneliness is countenanced, stared down, transfigured, treated.”

It may well be, says a friend, that the decline in religion and the rise in medicine, which in some narrow sense is a replacement, may be important in the epidemic of loneliness. Most religions put an emphasis on togetherness, praying together, welcoming everybody, no matter how miserable or marginalised. Medicine, in contrast, is about individuals, promising too often what it cannot deliver.

Perhaps the best we can hope for is a greater awareness of the potency and destructiveness of loneliness and a lessening of the taboo around it. Then we might do more to build a society that is more caring. The worst response would be to medicalise loneliness.

loneliness

 

Shakespeare says goodbye to me

As I sat in the second row in the Barbican watching Simon Russell Beale play Prospero I heard Shakespeare saying goodbye to playwriting, the busy life of London, his king, and to me. The Tempest may well be Shakespeare’s last play. It was performed in 1611, on one occasion before King James I. Shakespeare retired to Stratford on Avon “some years before his death” and died in 1616. And surely Prospero, a man of books exiled to an island (London and playwriting), is in large part Shakespeare himself.

It matters not. As I listened to the play I heard Shakespeare saying goodbye to me, and as I went through the play the next day I picked out the lines that were saying goodbye. Most come directly from Prospero, but some from Ariel (Shakespeare’s inspiration) and a few from Gonzalo, the good wise man Shakespeare aspires to be. Here are the lines that say goodbye.

 

Our revels now are ended. These our actors,

As I foretold you, were all spirits and

Are melted into air, into thin air:

And, like the baseless fabric of this vision,

The cloud-capp’d towers, the gorgeous palaces,

The solemn temples, the great globe itself,

Yea, all which it inherit, shall dissolve

And, like this insubstantial pageant faded,

Leave not a rack behind. We are such stuff

As dreams are made on, and our little life

Is rounded with a sleep.–Sir, I am vex’d:

Bear with my weakness; my old brain is troubled.

Be not disturb’d with my infirmity.

If you be pleas’d, retire into my cell

And there repose: a turn or two I’ll walk,

To still my beating mind.

 

Shortly shall all my labours end,

 

I have bedimm’d

The noontide sun, call’d forth the mutinous winds,

And ‘twixt the green sea and the azur’d vault

Set roaring war: to the dread rattling thunder

Have I given fire, and rifted Jove’s stout oak

With his own bolt: the strong-bas’d promontory

Have I made shake; and by the spurs pluck’d up

The pine and cedar: graves at my command

Have wak’d their sleepers, op’d, and let them forth

By my so potent art. But this rough magic

I here abjure; and, when I have requir’d

Some heavenly music,–which even now I do,–

To work mine end upon their senses that

This airy charm is for, I’ll break my staff,

Bury it certain fathoms in the earth,

And deeper than did ever plummet sound

I’ll drown my book.

 

Where the bee sucks, there suck I:

In a cowslip’s bell I lie;

There I couch when owls do cry.

On the bat’s back I do fly

After summer merrily:

Merrily, merrily shall I live now

Under the blossom that hangs on the bough.

 

All torment, trouble, wonder and amazement

Inhabits here. Some heavenly power guide us

Out of this fearful country!

 

And thence retire me to my Milan, where

Every third thought shall be my grave.

 

Now my charms are all o’erthrown,

And what strength I have’s mine own;

Which is most faint; now ’tis true,

I must be here confin’d by you,

Or sent to Naples. Let me not,

Since I have my dukedom got,

And pardon’d the deceiver, dwell

In this bare island by your spell:

But release me from my bands

With the help of your good hands.

Gentle breath of yours my sails

Must fill, or else my project fails,

Which was to please. Now I want

Spirits to enforce, art to enchant;

And my ending is despair,

Unless I be reliev’d by prayer,

Which pierces so that it assaults

Mercy itself, and frees all faults.

As you from crimes would pardon’d be,

Let your indulgence set me free.

Russell Beale

 

 

Charlie Gard and “The Spirit Catches You and You Fall Down”

The double and highly publicised tragedy of Charlie Gard dying of mitochondrial disease and his parents and the hospital arguing over his treatment and now his means of dying has made me think of The Spirit Catches You and You Fall Down by Anne Fadiman, a marvellous book. The book tells a similar story of both parents and a hospital wanting to do their very best for a sick child and yet completely failing to understand each other. I wrote about the book in the BMJ in 2003:

http://www.bmj.com/content/327/7419/0.8

“My understanding of the elusive concept “concordance” (patient and doctors agreeing together about treatments) comes in part from a marvellous book that explores an extreme failure of what might be called “concordance,” even though the term is never used in the book. The Spirit Catches You and You Fall Down  describes the complete failure of communication between a Hmong family with a daughter with severe epilepsy and the Californian health care system.

The family, the doctors, and many others involved—including nurses, social workers, and the judiciary—all wanted the best for Lia Lee, the Hmong child. People in the health care system, particularly two paediatricians at the hospital in Merced, went to extreme lengths to provide care—but the end result was disastrous. Lia suffered severe neurological damage a few years after an episode of status epilepticus. The parents thought that the doctors and their drugs had killed her rather than helped.  The doctors—who at one stage had Lia taken into care—felt misunderstood, unappreciated, and angry.

The triumph of Anne Fadiman, the author, is that she manages to make the reader understand and respect the views of both sides. She attributes her success to her insignificance (see the extract from the book below). BMJ readers will know about the medical side, but many have probably never heard of the Hmong. They are an ancient people from Laos who were offered residency in the United States after fighting for the CIA in Indochina. They believe that “loss of soul” is the main cause of illness and, like many peoples, that there is a positive aspect to epilepsy—in that its presence marks a person as a possible shaman.

Fadiman makes clear that understanding and cooperation—let’s call it concordadoesn’t come easily. It’s not just a matter of knowing a language and listening but also of understanding something of both the ancient and near history of a people, their beliefs, and their culture—something that nobody managed. This may seem irrelevant to British doctors treating British patients, but I suspect that the misunderstandings may be less dramatic and obvious but still not easily bridged. Outstanding doctoring may come from doing what Fadiman did—but day after day. That may be concordance.”

Extract from the book:

“Despite the admonitions of the seven doctors, I decided to try to meet Lia’s parents, bringing May Ying as my cultural broker. I figured that if she was the third-most-poised Hmong woman in the United States, she had as good a chance of anyone as being able to deal with the Lees. Despite May Ying’s impressive qualifications, she and I, by virtue of our gender and ages, constituted a decidedly low-status team. This turned out to be an advantage. I didn’t need more status in the Lee home. If anything, I needed less status. Ever since they arrived in the United States, the Lees had been meeting Americans who, whether because of their education, their knowledge of English, or their positions of relative authority, had made them feel as if their family didn’t count for much. Being belittled is the one thing no Hmong can bear. When Laos was under French colonial rule, the Hmong were required literally to crawl whenever they were in the presence of a Lao official, forbidden to raise their heads until they were acknowledged. It is no accident that in one popular Hmong folktale, an arrogant official is turned into a mouse, upon which the tale’s hero, a Hmong archetype in the guise of a cat, takes delight in pouncing. With Ma Ling at my side, I was not an official, not a threat, not a critic, not a person who was trying to persuade the Lees to do anything they did not wish to do, not even someone to be taken very seriously. My insignificance was my saving grace.”

Spirit