Monday, January 07, 2013

The Top Of My Head, Epilogue - The Daughters Of Le Roy

(For my late and much beloved maiden great aunt - and it doesn't seem like six years)

And so the end is in sight, and I will very soon be able to lay down the burden that I picked up some months ago. 

All things considered, to have done so wasn't really a good move - but one must do what one must, as must we all. If I'd ever been given the option of suffering from any type of illness, I'd really rather have had a bad dose of the cold.

The epilogue I had originally envisaged was a rather gloomy one. However, just this very day it has been my privilege to have had a considerable glimmer of that most precious thing called 'Hope' shone right in my face; and having been humming and hawing about how to end this thing, it was nice to have an appropriate ending land right in my lap. 

On 25 October 2012, the UK's Channel 4 broadcast a documentary entitled 'The Town That Caught Tourettes'. It concerned the very sudden development of Tourettes-like symptoms among a group of teenage girls in the town of Le Roy, New York, which has since moved on to at least one adult female. 

Apparently all good girls with no history of drug or alcohol abuse (one must also assume that they hadn't been messing about with stuff like Ouija boards, a factor no psychiatrist worth their salt would ever discount), they had all really been put through the mercilessly slow-grinding,  and small-grinding, mill that is the process of receiving a diagnosis of 'neuropsychiatric' (dopamine-dysfunctional) illness. At 21, I found the process by which I was diagnosed with Tourettes to be appalling slow, an ordeal of long waiting that lasted twelve months from start to finish, from November 1991 until November 1992 (and the next time that anybody took a look inside my head was in November 2012). That was at a time when public awareness of Tourettes was nothing like as high as it is now, and it was more than a little depressing to see how although awareness of the illness has moved on to the extent that its name can be included in the title of a TV show, the apparent reticence of physicians to diagnose dopamine illness seems to remain solid.

It seems to be the case that they consulted the local neurological experts in Buffalo, who advised them that they were suffering from something called a 'conversion disorder'. When I heard that, I thought 'By St. Loy! I question that!'

'By St. Loy!' is, of course, that most fashionable of oaths uttered by the Wife of Bath, a dedicated follower of fashion if ever there was one. Those of us who have felt it necessary to make our own investigations into neurology can sometimes suspect that some doctors can become fashion victims as well, sometimes perhaps overwhelmed not only by the need to publish but also by the need to keep up with what has been published, a task that even in the late 1980's the late Arthur Shapiro, who after all wrote the book on Tourettes, described as being nearly impossible. What 'conversion disorder' seems to be describing may instead be what is known in other circles as 'somatic compliance' - that function of diencephalic illness by which two sufferers in the same room start displaying each others' symptoms. Unless I am greatly mistaken, it is a symptom of another underlying illness being present and should perhaps not be treated as an illness in itself.  If that is how it is being treated, that would to my mind be a textbook example of the operation of Charcot's Straitjacket in action, of perfectly competent and well-intentioned physicians seeing illnesses where there are only symptoms - because, perhaps, as a consequence of the manner in which they were trained, perhaps a training which placed too great an emphasis upon the classification of symptoms rather than the reactions of the patient, perhaps leading to the development of an unconscious mindset in which the patient requiring to fit the symptoms becomes a higher priority than the symptoms requiring to fit the patient. 

The local experts seemed to think that this so-called 'conversion disorder' was a somatic expression of stress, which the girls denied. However, if they were not stressed before they might soon had have cause to be stressed when a journalist for the 'New York Times' named Susan Dominus, in my opinion a thoroughly self-satisfied interviewee, published what is in my opinion a remarkably unscrupulous article (1) which in my view rather coyly exposed the girls' private stresses for all the world to gawp at - perhaps in this day and age not the solecism that the teenage girls I used to try and hang around with in the bad old days BFE (Before The Facebook Era) might have considered it to have been, but still in my view a rather crappy thing for another woman to do to you when you're still at high school and coming to terms with life-changing illness in the glare of publicity.

But that's just my opinion. I am a naught but a lowly blogger, a poor and trembling cripple screaming, screaming, I tell you, on the fringes of the blogosphere, a scavenger on the cadmium polluted Third World rubbish dump of the intellect that is self-published journalism, whereas Susan Dominus writes for the 'New York Times', by God! What she writes about, and how she writes it, must therefore be taken extremely seriously, if only because she certainly seems to think so. As her article was published on 7th March 2012, she would obviously not have read my essay 'The Politics of Parkinsonism' of 23rd June 2012, which discusses in some depth the role that trauma can play in inducing certain types of neurological illness; just as I wrote it before I had had a chance to see 'The Town That Caught Tourettes'.

The documentary ended on a very upbeat note. Some of the girls seem to be making progress under the care of a paediatric neurologist named Dr. Rosario Trefiletti, who has diagnosed a condition akin to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus), and has treated it accordingly. This largely seems to be doing the trick - a great relief, for while watching it I had become greatly concerned that the terror that is encephalitis lethargica, now perhaps pinned down to being related to streptococcal infection, with all its horrible possible sequelae, might have returned. And that would be horrifying. 

It would be horrifying not merely because EL is the horrifying illness it surely is, but because it would mean that a failure to diagnose it might mean that EL has been forgotten by neurology in the way that Tourettes was forgotten in EL's wake. Remember, there were no diagnoses of Tourettes made in the United States from about 1925 until 1965, when Arthur Shapiro finally diagnosed a (female) patient. Remember, Oliver Sacks, born in 1933 and qualifying as a doctor in the mid '50's, was nearly 40 before he saw a patient he was confident enough to diagnose as suffering from Tourettes. The Great Forgetting of Tourettes happened because it seems that although society can accept people with Tourettes symptoms, it can't accept them in great numbers - and the sheer number of people who presented with TS symptoms during and after episodes of EL was just too great for society to take; so society just decided to forget about Tourettes instead, and the 'Enkies' went into the chronic hospitals, where they gradually died, and that was that. What Shapiro described as the over-diagnosis of Tourettes, a development he despaired of, may have arisen from the need for the illness to be rediscovered, which may in turn have resulted in things other than Tourettes being described as Tourettes. It would be a tragedy for medicine, and therefore for the world, if encephalitis lethargica, the cause of so many people suffering from an illness which the world found so traumatic it deliberately forgot it completely, had also been forgotten. The pendulum of history would then have swung too far, and sufferers of EL, wherever and whenever it appears, and their doctors would be faced with precisely the same traps and precisely the same pitfalls as those faced by doctors trying to treat Tourettes from the 1960's onwards. The doctors would not have not remembered the past, and their patients would be the ones who would have to relive it.

I am grateful to be wrong, and wish them all the very best of luck, doctors and patients alike; and may all The Daughters Of Le Roy enjoy lifelong good health. 

Oh yes, today. Today I happened to stumble across the very heartening story of Susannah Cahalan in the 'Mail on Sunday'. In 2009, Miss Cahalan suffered an extremely unpleasant episode of illness for a month, the consequence of anti-NMDA-receptor encephalitis, an illness that attacks mostly females and which is relatively easily treated with steroids. Miss Cahalan, who I think will be forever grateful to Dr. Souhel Najjar for his prompt diagnosis and treatment, has written a book about her experiences entitled 'Brain On Fire'. Such stories as hers and those of The Daughters Of Le Roy encourage one greatly, and lead one to believe that the days of restrictive, symptom-chopping, overly Linnean neurology will one day be remembered as a suitably obscure footnote in a never-borrowed volume of medical history, forgotten as soon as it has been published. 

Now to the really important things in life. I adhere to my view that 'Hulk' was much better than 'The Incredible Hulk'. Discuss.

(1) 23:03 07/01/13 - I have again perused in full the article 'The Mystery of 18 Twitching Teenagers', written by Susan Dominus and published in the 'New York Times' on 7th March 2012, and adhere to my original analysis of its character. 

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