"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:

  http://www.amazon.com/Asleep-Forgotten-Epidemic-Medicines-Mysteries/dp/B005B1H6P0/ref=sr_1_fkmr0_1?s=books&ie=UTF8&qid=1339997308&sr=1-1-fkmr0&keywords=asleep%2C+molly+cosby

About Fibro Brain...

Our first batch of hyacinths is making an appearance! 

Since we've had no winter this year, it seems that the beautiful bulbs my hubby and I planted will start coming up soon.  I've noticed others post lovely pictures of their flowers on their Facebook wall/albums, or on their blogs.  I thought I should give it a try because....

Well, first, let me back up here for a moment for the backstory.

I had ordered bulbs back in June/July for fall planting.  By ordering before a certain date you receive a huge discount (50%!) and I'm always up for that. My last massive planting was back in 1996, quite some time ago, I'd say.  Those bulbs lasted quite a while, though granted, each year we had fewer and fewer flowers coming up in the spring.  

Understand, our house needs some serious curb appeal since a contractor who took down our falling-apart front porch failed to ask me if I wanted to save any of some pretty wonderful landscaping I had. Oh, we needed some serious overhauling, and every one of the bushes was meant to be moved, but away, not forever.  I especially miss my white oak leaf hydrangeas which I'd planted as little more than twigs, well over fifteen years ago. Again I digress, but you get the idea. 

This year we had to do extensive remodeling (thankfully by another contractor) and since the work was and is still on-going, I thought bulbs would at least cheer up the front of the house - not to mention that they would delight our poor neighbors, I'm sure.

When I ordered the bulbs, however, I didn't take into account that my "gardening son," my "assistant," may very well be out of the country come bulb-planting season.  The bulbs were delivered to our doorstep by UPS in mid-September, but I put off planting them seemingly forever - thanks to the DD (code word for "Dreaded Disease," etc., if you recall).  But one day I bit the bullet, took up my gardening equipment which hubby had kindly put aside for me in a convenient spot, grabbed the bulbs and made my way to the front porch.  I wasn't exactly bouncing along, but at least I was up.  On the new porch, protected from the sun, I proceeded to line up the bulbs by color, type, height, growing time, color combinations.  It was truly a magnificent sight, all that coordination and organizing.  I was quite pleased with myself, I must admit.  I even took out a sketching pad and pencil and marked the places I'd put groups into and how many for each group, which would be in the front, which in circles, which scattered and naturalized - again, you get the picture.

That day, after about fifty bulbs, all my plans went kapooy!  Hubby came along and I snapped at him that I knew exactly what I was doing, thank you very much.  I noticed him grabbing a glimpse of me every thirty minutes or so, sure I was going to pass out before too long, or worse, fall and hurt myself and need a run to the ER for an X-ray....it's happened more than a few times before.  By nightfall, despite the many cold glasses of water I gulped down (to keep my blood pressure up), I was running out of steam and welcomed hubby's carefully worded offer to help clean up.  He looked at the bulbs still to planted and then at me and asked, "HOW many bulbs did you order?" Very matter-of-factly I answered, "oh, about a hundred and fifty."  Good thing I couldn't seen the eye roll because of the dark, otherwise, the MAN might've needed the ER.  (OK, I'm kidding about him and possibly needing an ER...somewhat!)

Well, the expected happened.  I paid for all my efforts the next day and the next and the next....  Can we all say, "post-exertional fatigue!", one of the hallmarks of this DD?  I could manage the pain this time, but the fatigue was now the real killer.  Hubby kept asking if he could help.  Through gritted teeth I kept informing him that I'd get out there and do it myself, thank you very much.

To make a long story short, a few weeks later hubby ended up planting the rest of the bulbs himself.  He planted another hundred and didn't make a dent.  Each day he'd rush home from work to plant as many as he could before the sun went down.  For the first time in my life, winter hours were my enemy and I wanted Daylight Savings Time with its extra hour of light - a definite sign of my desperation.  We kept trying to figure out new areas to plant the bulbs because the darned bulbs seemed to be mysteriously mutating and procreating.  Hubby started to use flashlights strategically placed around himself and any particular flowerbed he was working on.  We got to the point where it didn't even matter WHERE those bulbs would go.  We just wanted those suckers in the ground!  Eventually we tallied up each bag and how many were in each one.  It turned out that there were over five hundred bulbs, all for a lot not much bigger than a postage stamp.

The moral of the story: CFIDers and those with Fibro can't count nor should they be believed that they can overcome all obstacles.  We may think we can, even truly believe so, but nothing is further from the truth...we are all too often in serious denial, thinking we can do what we did before we became ill.

People, please take note.  I'll be discussing this further once I can get my wording correct, but there's a point I'd like to bring up at this point.

There IS a difference between depression and fibromyalgia, with depression on the one hand and CFIDS and Fibro on the other, contrary to what all too many doctors, as well as crazy psychiatrists and psychologists, seem to believe.  With depression people feel as if they can't do anything, they can't even begin anything, all because of the feelings of desperation, uselessness, and being overwhelmed. With CFIDS/CFS/ME and Fibro, on the other hand, we  all too often think we can do, as I said before, whatever we could do before we became ill.  When we can't do something despite every effort, we get angry, we cry, and/or become upset, a normal reaction. 

Now that's a HUGE difference, one to explore for another time.

In the meanwhile, I can't wait to see what kind of mishmash comes up this year in our garden.  Should be interesting!