Patient: The True Story of a Rare Illness

National Review, Oct 27, 1997 by Anthony Daniels

Of all these books the most valuable by far is The Diving Bell and the Butterfly by Jean-Dominique Bauby, a Frenchman who, still in his early forties, had a rare kind of stroke that left him conscious but virtually unable to communicate with others, in the so-called "locked-in syndrome." He managed to dictate this short memoir by using the blink of his left eye (the only part of his body still under voluntary control) to indicate the letter of the alphabet when read a list of letters by an amanuensis, laboriously to spell out words. Most poignantly, he died a couple of days after its French publication.

Bauby was editor of Elle and, until his stroke, led the kind of glamorous existence which is not necessarily an aid to deep philosophical reflection. Le Monde even questioned whether it was possible that this memoir was really his, rather than a work of semi-fiction by his amanuensis. I see no reason to doubt its authenticity, however, and it is a moving affirmation of the value of life even after so catastrophic an event.

Interestingly, shortly after I finished reading this book, The Lancet published an interview with the former president of the British Royal College of Physicians, Professor Raymond Hoffenberg, in which he said that his worst nightmare was to be treated for locked-in syndrome by a physician who did not believe in euthanasia. The juxtaposition of this memoir and that interview neatly encapsulated the fallacy of the concept of the living will: you can't decide whether life is still worth living under certain conditions until you're actually experiencing them -- by which time, of course, it may be too late.

THE other four memoirs record their authors' struggles with conditions as diverse as Churg-Strauss syndrome (a rare complication of asthma), stuttering, rectal cancer, and optic neuritis causing temporary blindness. Written with various degrees of sensitivity (and largely padded out with memories of this and that from their pre-morbid lives), they raise the interesting question of whom they are written for, and why.

It can hardly be that they are written for fellow sufferers, since, according to the Oxford Textbook of Medicine, there had been only 154 cases of Churg-Strauss syndrome reported in the world as of 1996, and some of the people so afflicted had died, so that sales of Ben Watt's Patient, an account of his experience of this condition, would have been exiguous even by the standards of academic publishing had they relied solely upon Churg-Straussians.

By contrast, Barbara Barrie's Second Act, subtitled Life after Colostomy and Other Adventures, deals with a common condition, and I can quite see that the thousands of people who undergo colostomy every year need practical information about the procedure and its aftereffects. But this is not that kind of book: it seems to be aimed at the general reader. The Library of Congress Cataloguing-in-Publication Data categorize this book, inter alia, under the heading "Colostomy -- popular works." When I showed this to a book-dealer friend of mine, he began to wonder whether he shouldn't set a shelf aside in his store for the subject; but quite why any sane person who is not a coprophiliac would wish to read about it is to me utterly inexplicable.