About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, June 18, 2012

"Asleep: The Forgotten Epidemic..."a medical mystery.

A couple of years ago, I happened upon a lecture on Book TV which broadcasts on C-Span 2 during the weekend.  A relatively young lady (sadly, any woman younger than me is a "young lady") was giving an incredible account of a sleeping epidemic I'd never heard about, nor ever read about before, encephalitis lethargica (EL) literally meaning, "the encephalopathy that makes you sleepy."  Immediately I had to order the book and then after reading it (in one long "sitting") I made one of my doctors read it.  He loved it - and I then ordered it as a Christmas present for my GP and for my neurologist.  Yes, I'm such a wild and crazy gal when I give out Christmas gifts.  I'm pretty sure the latter two didn't read it and it's a shame because had they started reading the book, they wouldn't have been able to put it down.  Actually, perhaps that's exactly why they didn't read it - the time factor!  But, really, how could I resist something like this book when sometimes all I ever crave in life is to sleep?  

And yet, all joking aside - and the joking is about as funny as someone saying to "us," the CFIDS/ME and fibromyalgia people, that they too are always tired and wish that they could also stay in bed all day, "hardy har har!" -  Asleep: The Forgotten Epidemic that Remains One of Medicine's Greatest Mysteries by Molly Caldwell Crosby was riveting for many reasons. On the TV broadcast I watched Crosby deliver a very polished and entertaining "lecture," along with a questions and answer period.  And I admit it's because I suffer from severe insomnia - the opposite of what the "key factor" in this sleeping illness was - that I stopped at the channel.  Yet it was the story that was in and of itself compelling and the way that the book forced the reader to stay glued, once I stared reading the book, was amazing.

This strange and mysterious illness started showing itself around 1916, peaking in 1920, then had a second wave hit in 1924, and it affected as many as 5 million people world-wide, one million of whom died.  The key symptom was a huge sleep, from weeks, to months to even years.  All too often the real victims were the "survivors."  And yes, the movie based on Oliver Sacks' book, Awakenings, touches the teenist tiny bit of this story, picking up where Sacks came into contact with a few of these victims in the 1960's. But though the movie is great, as is Sacks' book, please don't go into this one with that story in mind because this is a completely different kind of read.

The problems were various, from Parkinson's-type symptoms to tics, seizures, slurred speech and huge personality changes - even violence and insanity - and there was a huge "spectrum," to use a word that is so popular today, perhaps even overused.  The illness came out of nowhere, there was no physical trauma that started it, no infections that could be seen or identified.  It started to fade out around 1926, also almost suddenly, though it was scary in that it did pop up here and there over the years.  And one was never really "over" it.

As I read this compelling, often gut-wrenching story, there were many parts that reminded me of the CFIDS/ME saga, with the frustrations of trying to figure out what was going on with these patients, and by what means this was attacking people, whereas other parts of the story fascinated the history-loving part of me. Crosby, for example, captures the spirit, sounds, smells and the history of New York City in that era in ways that had me sigh at her ability to craft a sentence or paragraph.  In fact, her writing was so eloquent, yet so spot on, that I did something I've never felt compelled to do before: I actually googled her in order to see in more depth who had taught her to write so well, document and research so doggedly and to capture her reader and not let him or her go. And Cosby did have a compelling reason to investigate this story: her grandmother came down with this illness in 1929, and though she survived, there were life-long problems.  To add to my admiration of her writing abilities and research devotion, the book is richly multi-layered.  Cosby divides her book around several cases, including J.P. Morgan's wife, who was affected by this malady, and then weaves other stories around them: about WWI, the world-wide pandemic flu that followed on the heels of that war, the technological advances that were made in the 1920's and then the stock market crash and the Depression as a result of it, and, as they used to say in movie trailers, "much, much more!"  

As I read the book, my thoughts were all over the place, sometimes frantically so, and I had to start marking up my hard copy.  Almost all the major events in my life took place in NYC from being born and baptized there, to meeting my husband, working at my first "real" job, marrying, and finally having my first child there.  It's obviously been a huge part of my life, though I didn't grow up in NYC - that sounds odd when you see all the "firsts" in my life that occurred in it, doesn't it?  At any rate, I first started to suspect that there was something definitely wrong with me when I was living in New York and did mention it to various doctors I had to see for normal problems, as well as some pretty weird ones.  And just as I'm fascinated (and frustrated) by the way my brain can't deliver on sleep and that no amount of reading, going to specialists, thinking everything through as to why this is happening to me and failing to find an answer, I'm fascinated too by the opposite problem, why a person can't stay awake.  This book was almost tailor-made for me, I often thought.  

It's sad that the book didn't get to the New York Time bestseller list because there is so much in it for everyone. For example, it shows how much this "sleeping sickness" - as much a misnomer as "Chronic Fatigue" is in its many ways - changed the face of medicine.  Unlike CFIDS/ME, this illness was very famous and infamous.  Indeed, this illness was a huge catalyst for the new field of neurology.  The book is divided into seven chapters, each dealing with a fascinating story of how a certain person was affected and, woven into each case, are incredible stories that just don't stop drawing you in.  I loved the chapter that dealt with J.P. Morgan's wife because it showed how much financing and influence, as well as a big name, are needed to push an illness to the forefront: and yet, even with that the story has been dropped and forgotten.  "Darn it!" I kept saying to myself - or something close to it - "this kind of thing can't happen to 'us'!" though in many ways it has and we keep hitting our heads against walls.  

I also couldn't help wondering if the reason that this story had been forgotten by the medical community at large is because it showed such a failure on their part.  Who likes to live with these glaring mistakes, these huge reminders of the way in which medicine and the body/brain may never be fully understood?  It's not an accusation. It's simply thinking about the nature of the way the mind works. 

In the end, this book also delivered what I absolutely live for in the book world of my life: the story that I can't quite seem to forget, no matter how many books I read, no matter how bad my memory becomes.  I may get details off, forget some of the really interesting things that as I'm reading I think I'll never forget, and then do. But the basic thing just STAYS with me.  Anyone who can still read should read this book: it teaches and entertains on so many levels.  It makes you think...

...and I love to think!

The paperback version is now available at Amazon for $6.00 and no, I don't have any reason to endorse Amazon...I just happened to notice the price on one of my usual journeys through their website:


  1. You would also like Love and Fatigue in America, about an Englishman who comes here for a job and gets CFIDs and cannot believe the nightmare of our medical care in the US. He also gets to deal with all the day to day of illness too and the story I thought touched so many places in me no one else had been! He put my life into words.

    1. Thanks so much for bringing this book to my attention. I just looked it up on Amazon and it sounds great! It will be added to my pile of to-be-read and I'm looking forward to it.
      Irene xx