Month in Review...

St. Louis' Record Blizzard of 1982, snowed in for a week!

I hate to sound like the old fogie that I am, but really, where has January gone?  It's been an eventful month. In fact, so eventful that I've barely blogged. (Eye roll!)

I came down with bronchitis this past week.  Now I'm on antibiotics and strict bed rest. I'm a bit grumpy because I had so hoped to start in on trying to declutter the house.  Darn it!  

However, I'm thrilled I got that pneumonia vaccine last year.  (And no, I don't get the flu shot, in case anyone wonders.)  I've had three occasions when my bronchitis turned into near-fatal cases of pneumonia, hence the vaccine many years ago.  My last bout of kinda-weak pneumonia last year reminded me that it was time for another pneumonia vaccine. Thus far, fingers crossed that the bronchitis doesn't go any further. 

My rheumy had warned me that I probably wasn't ready to get that colonoscopy I talked about in a previous post about "Cookbook Medicine."  Yes, the prep was easy (for me! we're all different!) but the aftermath was awful.  I already had the shakes and shivers to an alarming degree and they've gotten worse.  Now I'm adding the word "vibrating."  My whole body feels as if it's vibrating and that the house is shaking.  I have huge sweats, run fever then shiver: often it feels like what I imagine malaria feels like.  My mouth gets full of bumps and ulcers.  When I mentioned this to my rheumy and said I hadn't heard of anything about the after-effects, he started laughing and said, "Irene, they don't see the after-effects. I do!"  Yes, he was right. I probably did go in for that colonoscopy when I was still too weak from all those hospitalizations and ER runs in the fall, but I'm glad we can cross a problem with my colon off my list of red herrings.

Continuing along: as always in January, our movie-obsessed family has been following the award shows and we look forward to the Oscars, which won't be telecast until March this year.  Hey!  One of the only ways I get through the holiday season is because I know that the Oscars will soon follow.  You know: it's the dangling carrot.

I've seen one movie which really and truly moved me.  I'd never heard of it before, but after watching it, I couldn't stop thinking about it.  It's Dallas Buyer's Club and I think that anyone who has a chronic illness, which no one understands, will find the movie especially fascinating and on many levels.  Had I not seen it, I'd have thought all the accolades and awards which Matthew McConaughey has received thus far were because he'd lost so much weight to play the role.  I'd have been wrong.  He was incredible in the part.  Jared Leto hands in a marvelous and multi-layered performance.  The script, story and writing is amazing.  Need I say more?  Don't make me: I want you to be pleasantly surprised.  

Notably for me: I became a grandmother, finally!  (Excuse me as I do the happy dance - in my head, silly!)  To say we're delighted is an understatement.  After a very rocky few months, Baby Aiden was born.  Once he arrived home yesterday, and after a good quick nap by babe, mum and dad, hubs and I got to talk to Baby Aiden via Skype.  He's a nice, quiet baby - as long as he's not hungry and is not cold. But a funny thing happened. Whenever he's uncovered he starts to cry.  But once I started talking to him, he would quiet down. I hadn't noticed it, but my son had.  And - jumping for joy - my son was right.  Each time I stopped talking to the baby he'd start crying again.  My, my!  Aren't I the won-over Babushka! 

I did read a book this month that I really enjoyed and wanted to pass along the title. It's Fanny Flagg's The All-Girl Filling Station's Last Reunion: A Novel.  I think it's her best book since Fried Green Tomatoes.  The best part may perhaps be that it's a very easy read for those of us who have a hard time concentrating - or remembering - because of brain-fog.  The story is involved but in a slow, sweet ice tea way on a hot summer day. You know how the outside of the glass gets iced and as your hand melts the frosty outside, the water streams down, zig-zaggy?  There's heartbreak but there are laughs, just like life. I'm not going to tell you what it's about.  Just check it out.  I don't think many will regret reading it.  

And I guess that's a wrap for January.

As always, I hope everyone is feeling their best - only better.  Ciao and paka! 



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Good Summer Reads

The new summer's light entertainment has finally kicked in and I, for one, am thrilled. Add a bit of very light summer reading and I'm pretty good to go.  I've been holed up in bed for a while with almost no mobility and it's been hard to do much of anything since my health seems to change from "I can't take this anymore" to "OK, I can live with this IF I have to," changing moment to moment almost.  But it all boils down to how much I can concentrate.  Let's just say that I'm happy this flare I'm going through (it's been upgraded to full flare status, up from the "mini" of the last few weeks) is happening to me during the summer months when things tend to be light and less stress is around. 

I actually read three books a couple of weeks ago!  Yippee!  The bright side of not having read much in the last three years (or thereabouts) is that practically any new books hubs now brings home from the library are ones I haven't read.  And so I have a real choice as to what I want to read as opposed to, "OK, since there's nothing better...."  You know: sort of like making a decision as to which person to vote for: the lesser of two unlikeable candidates in every election I've participated in since the age of 18.  But, I digress. 

Last month I wrote a post (link) where I listed some of the authors and their books which I thought would do well for those who may have difficulty concentrating on reading. This post was quite popular with good comments on twitter, etc, so I thought I'd let you know what I read a couple of weeks ago which put me in the greatest of moods - all because I was actually reading!  I don't know about you, but I'm always looking for good titles and often I mourn the ending of a book partly because it means I have to find something else as good to read! (More titles can be found on a long ago, but popular, post here.)

I've written before that I think that one of the ways to go if you have trouble concentrating because of the CFIDS/ME/CFS and/or fibromyalgia "brain fog," and have pretty much given up on reading is to go the series route.  It's an easier way to get back into reading when you have known major characters and the dynamics going on around them.  (See this post for more tips to reading if you have CFS/FM.)

So in that spirit I started with a favorite author of mine: Margaret Maron and her Deborah Knott series.  I hadn't read her last two novels, The Buzzard Table and Three-Day Town.  I enjoy Maron's Deborah Knott series but haven't been able to get into her newer series featuring Sigrid Harald - I need to give those a try again when I feel better. (I'm always aware that how I feel about a book or author can all too often depend on my health and how I feel when I'm reading and so I try to factor that into the equation of likes and dislikes.)

Margaret Maron combines her two series into one in her latest two books, most likely in order to bring in her massive Knott fan base in order for us to fall in love with Sigrid as well.  Unfortunately, I think that these last two novels aren't as strong as her previous Deborah Knott incredible successes.  This is not to say that these last two novels aren't still good reading!  It's just that if you're going to start in on this series - which I do recommend! - her last two are not the ones to start with.  There was also a lot of jumping around from different points of view in Three-Day Town which can be a bit annoying, I would imagine, to a lot of readers, but especially the fibro-brained ones who have difficulty shifting gears.  However, Margaret Maron is an incredibly gifted writer: she's quite impressively won Edgar, Agatha, Anthony and Macavity awards.  She is really worth checking out.

I have to laugh. I was so unsure of my so-called brain that I started reading a stand-alone novel by a favorite author and just could not get anywhere with it.  But I kept plugging along, determined that I would beat my fibro-brain.  After a week into it, and only at page 77, I decided that I wasn't going to torment myself anymore.  It was time to pack my bags, so to speak, and return to the dreaded TV.  That's when I happened to pick up Maron's book and realized that it wasn't me at fault in that attempt but the author.  So, remember to be kind to yourself as well.  Don't underestimate yourself.  Just find something that is actually readable and engaging! 

On to my big success: John Grisham's The Racheteer.  I've not read much of Grisham's books in a long time because they had become too predictable and his books have almost acquired a following-a-formula feel about them, with Grisham just churning out a new book each year - partially the fault of the publishing house, I know.  I admit I began reading the book only because it was among the huge haul hubs had dragged home from the library in this awful heatwave we've all been experiencing.  And how happy I am that I did read the book! 

I had forgotten how readable Grisham is.  The content of The Racheteer is first class, the characters as well. I had also forgotten how "simple" his writing is.  I don't mean as in "elementary" but more in the line of Hemingway's deceptively easy flowing prose: very clean writing.  Now don't get me wrong.  I'm not saying that Grisham is as "literature" as Hemingway - not by any stretch of the imagination.  But Grisham's style flows and is easy-going and his plot is captivating.  I was happy as my fibro-brain could follow and I thoroughly enjoyed the book.

As to what is the book about?  Grisham was asked to describe the novel in one sentence and here it is: "A federal judge is murdered, and our hero knows who did it, and why."  I thought I'd borrow a few reviews included on Amazon's site: 

Electrifying...carries the reader along one track (innocent man seeks exoneration) only to switch on to another (cat-and-mouse caper) halfway through this delicious, frictionless ease."   ~Guardian.

 And:

[T]his is not a story about a triumph or a miscarriage of courtroom justice. It's the more devious, surprising story of a smart man who gets even smarter once he spends five years honing his skills as a jailhouse lawyer - and then expertly concocts an ingenious revenge scheme... Mr. Grisham writes with rekindled vigor here."   ~New York Times

Wow.  Need I say more?  And note the "rekindled vigor" part of the statement! 

BTW: I seem to have lost my Kindle!  You know how I recently spoke about losing the very few items around my bed?  Well, my Kindle seems to have gone in the "lost sock from the wash" way.  Annoying, though I do have a few library books to pick from.  And good news: one of the rooms in the house which has a massive collection of books has been freed up so I hope to find some books in there which I'd like to reread. (See tips for reading for those with CFS/FM here.)  Amazon really should look into putting a location chip into the Kindle!  I'm going into Kindle withdrawal - words I never imagined, just a few years ago, would ever come out of my mouth!

I've also - thank heavens! - found a few TV favorites.  That will have to be the next post as I need to get back into bed.  (Being mature: how unlike me!)

Any good light reading titles out there, my lovelies?  I'd love to hear about them if so! 

In the meanwhile, as always, I hope everyone's feeling their very best - only better.  Ciao and paka!



(Did you enjoy this post?  Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)

Determined to Read Again & Book Reviews

Reading in the school library in more stress-free times...

Oh for goodness sake!  I'm trying to write a post while fibro-brain appears to be at its worse?  My concern is: will I even make any sense?

But before I go on, I can't help "promoting" myself a bit. There aren't too many "highs" in my life, so this is a rather biggie for me.  Another blog, fibrodaily has a segment called "Fibro Warrior of the Week" and I was asked to be interviewed as their latest warriors, the seventh.  It came out yesterday.  Thanks so much FibroDaily: you made it all so easy and were so kind with what you said before the interview started.  

OK: enough with the odds and ends (moi) and let's get to the problems at hand.  

With the "cold" weather (understatement) it's the perfect time to curl up and read some mindless and fun books. If I'm to get back in my reading to where I was a few years ago, I need to get to the point where I lie down and not even notice the time passing by as I read.  So, it seems that for a while I'll need to forget Einstein's biography (true: what possessed me to buy one?)  or catching up on my Proust (made that one up) or reading about Malaria and how it ruled the world for thousands and thousands of years even into the present time in some places - like Papua New Guinea where my son "holidayed" not once, not twice, but three times when he finally came down with Malaria.  You'd think his mama would have taught him better!  But enough on the foibles (insanity) of my family.

I need books that will get my brain to start working out like you would exercise a muscle to stay in shape.  After all, in recent decades there were times when I had to force myself to read.  There were all too many days when my brain couldn't handle the usual and I had to adjust to that.  It was a funny time, one day a Harlequin-type romance, the next day a prize-winning novel.  In my shorthand way, I tend to say that I'm a moody reader.  However,  I've realized that's far from the truth.  It's that my brain simply can't tolerate or take in huge concepts, ideas, glorious writing which makes me gasp at the perfection of a word used or a sentence structure.  But in decades past, the Harlequin-type novel would creep in because the most important thing, as far as I'm concerned, is to read or you WILL lose that ability.  For example, I've never been the best at reading Russian, but I could do it.  The frustration set in because I read rather quickly in English but the Russian had always lagged behind,   However, in college I even read Dr. Zhivago in its original, plus a few other goodies.  But that sight reading is gone now.  So, use it or lose it!  I can't afford to allow this to happen with English.  

And so I'm into those baby-steps.  I focus on not thinking about my daughter and what she, as well as WE - our entire family - went through in her care.  I've had my own near-death experiences since my daughter's but enough time has passed that I need to get back to using that oh so important "muscle."  Now!  Fast and frequently.  Besides, reading is me.  I started back when I was four and would constantly get into trouble because I just couldn't bear not having a book in my hands.  I hear a title and it brings back memories of what we as a family were going through, almost more so than a picture.  

So, I'm admitting to a few books which I've read in the last few weeks, with the hope that some here will find a way to take a vacation from our DD:

• The Secret Keeper by Kate Morton.  I'd read her other novels and can't remember anything at all about them.  At the moment that's a good thing.  I find that if I reread a book, it's much easier to get into the reading habit, at the moment.  I certainly hope to progress beyond what I have already read, however. I did very much enjoy The Secret Keeper because it kept me guessing the "answer." I look forward to rereading her other novels. (BTW: forgetting what a book is about is not a negative: it's just the way my brain works.  I rarely remember what went on in a book a day later and that's one of the reasons I need to read a book in a single day or one sitting: otherwise I cannot  remember what had happened in the book the previous day!)
• My Mother Was Nuts by Penny Marshall.  This definitely belongs in the laughter category: by now I think everyone knows how I feel about laughter.  I've fallen in love with all the Marshalls.  What a family!  Funny as you would imagine, but there are so many more aspects to them to admire.  I love their love of family (despite the title: I won't give out more for fear of a "spoiler.") I loved this book so much that I then read her brother, Garry Marshall's, memoir, My Happy Days in Hollywood.   Anyone who grew up in the NYC area in the 50's and even 60's will absolutely love both books. BTW: I was able to "borrow" Penny Marshall's book for free with Prime on Amazon.
• Call the Midwife by Jennifer Worth is actually a trilogy and the last two are finally available here in the States through Amazon and kindle.  I absolutely adored the first book, and was extremely surprised that the TV version  actually respected the memoir, give or take a few minor liberties. I'm about halfway through the second book, Call the Midwife: Shadows of the Workhouse.  In this edition of her memoir Worth speaks about fewer people so that we can understand how certain things turned out the way they did in fewer characters' lives.  Her depiction of the workhouses is a great tribute/reminder to the horrific conditions that those "thrown" into those places had to endure.  It's a very compassionate and very well-researched book - though often as heart-breaking as it is eye-opening.  However, something about Worth's matter-of-factness and bits of humor here and there make this an enchanting memoir, definitely worth reading.
• I've rediscovered Nevil Shute's A Town Like Alice and loved it as much as I did 50 plus years ago. 
• I also reread To Kill A Mockingbird by Harper Lee.  Mockingbird really should be read every few years.  The love and gentleness of that particular era is striking. The quiet wisdom keeps you thinking long after you've finished reading the book.  You fall in love with Atticus with his quiet strength and goodness, as well as Scout, that observer of everything.  In other words, you fall in love with the characters all over again.  It's such a readable book and yet such a classic, perhaps one of the best American novels ever written.
• The Secret Life of Marilyn Monroe by J Randy Taraborrelli.  I knew very little about her, but just enough that I had the outline more or less already configured in this so-called brain of mine. This was a great reading foothold.  I can see the horizon where I'll be able to read almost anything that tickles my fancy!  Bring it on!  

As always, I hope everyone's feeling their best, only better!  Ciao and paka! 

Roads Traveled and Not Traveled

Little Irene really ticked off about the big fuss made for kindergarten graduation when there was still so much more work to get done before getting to the PhD studies.

Last night, as hubby (and I?) watched the summer season's first episode of "Grimm," my mind started wandering.  I couldn't help thinking about how much my world has differed from the time I started thinking about what I wanted to do in life vs. how my life has actually turned out.  It's definitely been a mixed bag, as I think it is for everyone. I truly believe no one comes out of this life unscathed (perhaps the only thing I took away with me from my class on Emerson) - it just depends on how much "scathing" we happen to experience.

I well remember that as a four-year old, I wanted two things.  I knew beyond a shadow of a doubt that I would go to college one day - and proceeded to inform my high school next-door neighbor of my intentions.  She had a good laugh and from that laughter she practically rolled down the hill we lived on.  

But I was also aware that our family was pretty hard off financially  - both of my parents arrived in the States a few years after WW ll ended - and consequently my other "goal" was more of a dream than a firm "this IS going to happen."

I always dreamed of traveling and I do think that's one reason I became such a bookworm so early on.  The armchair traveler: the easiest and least expensive way of exploring the world.  And I think I did inherit some sort of a "travel gene."  Our family did a lot of traveling along the eastern part of the States, but the immigrant's way. Rarely did anyone stay at a motel.  You had immigrant friends in Cleveland, so you explored everything between NY and Ohio.  You had friends in Florida?  Ditto!  

But I had bigger dreams and higher aspiration than to "see the USA in a Chevrolet" as an old commercial beseeched us.  The only problem?  I didn't know how we'd pay for college, much less travel?  (What four-year old thinks this way???)   

Back in the day, as they say, you needed money to travel The World, LOTS of it - or you could become an airline stewardess, a very glamorous job when air travel was so exclusive.  The problem with being a stewardess, however, was that in the days of what would now break a bucket load of laws, there were incredible restrictions to being a stewardess - and I never thought I could achieve them.  Among many other requirements, the stewardess was beautiful, her figure was to die for, she had "class" galore and needed at least a second language.  I felt I had only one thing going for me, the second language bit, and after my Villa Maria Catholic boarding school I just might have been able to figure out the "class" thing - "might" being the operative word - but the rest...?

Thankfully, the world started changing - as things do - and I changed too - as one does.  Flying started to become an "affordable luxury" and as our family assimilated into the great American middle class, travel around the world also became a not-so-impossible dream.  And one fine day I met hubby, a person who rarely, if ever, met a challenge he didn't love, who'd already spent a summer backpacking his way across Europe, often sleeping in parks when he couldn't afford a youth hostel.  My biggest travel dream came true when we flew to London for our honeymoon.  

Since then, I've been more than fortunate: I've traveled aboard to more places than I could have ever imagined - WAY more than I could have imagined.  Anyone who's read much of this blog knows I was in Kuala Lumpur, Malaysia just last month, despite this DD.  

I'll let you in on a secret.  Until two years ago, I'd never even HEARD of Kuala Lumpur and had no idea that Malaysia was even a country, much less knew WHERE it was.  (Shame on me: one of my favorite novels of all time is Nevil Shute's A Town Like Alice, which started its story in what was then known as "Malaya.")  And I wasn't alone.  Every single person I spoke to - after my son started to try to figure out a way to go there to study - would ask me, "where is THAT?"  When we were at the "major medical center," which was VERY international, I never once came across anyone who knew where KL was.  The only person I spoke to who knew?  My cousin in Russia when we spoke on Skype!

There's a saying which has become a cliché: be careful what you wish for.

And there's the rub.  I never specified, growing up, that I needed my health too.  Health?  That was a given.  We may have been poor, but everyone I knew had their health - in spades!  I always thought the expression, "if you have your health you have everything" was a saying that the rich made up to make us poor people feel better about our lot in life.  (Skeptical little creature, wasn't I?)

And so, with each overseas trip we ever took, I never even realized at the time that it was harder to get myself together to go on that dreamed-of destination that I'd read about in books.  And with each trip, it became more difficult to  actually DO things once I got to my destination.  I really slowed hubby down, but he just assumed all women were slower than men.  (Hubby must be forgiven: it WAS the '70's and a very different world gender-wise.) When I arrived home, each trip forced a longer recovery time on me, though we were very good at coming up with excuses as to why each was harder.

Not once did hubby suspect that anything was amiss.  I looked healthy.  I was active and went to a gym every other day at a time that no one really went to gyms.  We were in NYC, so this was a new trend, especially the yoga classes.  (I told you the world has changed but you doubted me!  Admit it! ;)) 

I well remember barely making it home, just a few short blocks, but having to sit down somewhere at least twice on each block, sweating, panting, unable to catch my breath, desperately trying not to pass out.  Yet we saw this as normal, thinking that I was simply "adjusting" to the whole "exercise" movement (four years of adjustment?). We conveniently overlooked or forgot that I walked miles each day in college and was never out of breath, running across our infamous university drill field numerous times a day - or the thirteen years of summer camps in very primitive conditions and much physical activity, with me always the best runner and swimmer in my age group.

We conveniently forgot or didn't understand that the flu that initiated this illness of mine started a series of events that looking back on were ever so obvious that something was amiss - like ending up in the hospital.  Just weeks before I met hubby, just a few months after "that flu," I was hospitalized for colitis.  We blamed all the antibiotics I'd been on because of all the secondary infections I kept adding on to that initial flu as it grew more complicated every day and as I passed out every day from that "ground zero" illness, thinking, "mind over matter" and "no pain, no gain."

Over the years I had incredible (to me) opportunities to travel.  At first, each trip was something we saved up years in order to do.  Eventually, we became more financially secure (thanks to REAL jobs) and after about 15 years into my CFIDS/ME/fibromyalgia, insomnia, each trip eventually reached the point where it was not frivolously taken.  We were finally noticing a pattern.  We also finally had a diagnosis, though we had no idea what to do with it: no one really did.  

But if nothing else, I've always been stubborn and always hard on myself.  Sick?  Yes...but nah, not REALLY!  So in the '90's, visiting most of Europe or the two trips to Russia and the Ukraine once the Soviet Union fell apart, or taking my three trips to Australia, there were family reasons for me to go.....the list is long.  But each trip cost me, and the price for my last trip to Oz was two years in bed. 

So, here I am, 38 years later.  And I still cannot accept that I'm ill.  

Perhaps if this wasn't such an invisible illness, I'd have an easier time accepting it.  Perhaps if I'd known from the first days that I was sick and not lazy, I'd have been able to adjust.  Perhaps if I'd known that having three 10-lb. babies in three years was a bit over the top, and had taken it a bit slower, I'd have been spared the degree to which I'm so sick now.  Perhaps if we'd known what we were dealing with early on, I could have spared not just myself, but my family, too, a lot of grief, a huge understatement.

In the end, I have to wonder, did I achieve what that four-year old was determined to do and had the chutzpah to dream of?  Yes, I did get my university degrees, though not the PhD I so badly wanted.  And I've traveled more than I could have dreamt of, even further than Dorothy did to HER Oz.

And I ended up with a life I never dared dream: a husband who loves me and whom I've loved since the first moment I laid eyes on him (yeah, yeah, corny), a best friend of 42 years who is so wonderful that I feel badly that everyone in the world doesn't have this fantastic a best friend in their lives, and the biggest treasure of all, my three beautiful, kind and giving children who, despite putting much grey in my hair, have made my life rich beyond any measure.  (As she madly knocks on wood and does the Russian "tphoo! tphoo! tphoo!")

The only thing I would have changed?  Perhaps I should have added the "good health" clause.  

But to put a positive and yet very realistic spin on it all, I have to wonder what incredible things may not have occurred had I remembered that clause.  And that's my other pastime when things get especially bad.  I really, really have to work on seeing that things are what they are, the past can't be changed.  

Consequently, to stay relatively sane, I start to look at all the little roads that may have not been traveled had I stayed healthy.   And as we all know, the road not traveled, the harder road, is really the one that makes our lives richer.  Harder, yes, but hopefully, much more rewarding in the end.  Or so I sincerely hope!

What do you think?   Given a chance to change the course of your life, knowing what you know now, would you have gone along the road you were fated to go?   In Frost's poem "The Road Not Taken" and in the M. Scott Peck's famous book, The Road Less Traveled, we are given choices, whereas in real life, we with CFIDS/ME/CFS, fibromyalgia and the plethora of complications have been thrust upon us...it wasn't a choice.  But looking back, do you think that there was some purpose that this often nightmare road was the fated and destined one?

Just thinking.

And I do hope everyone is feeling their best today, only better!

             ************

And please don't forget to sign up for the Subscriber Giveaway. ;). In my more insecure moments I worry no one will end up making a comment and the Giveaway will be a flop.  Hubby says not to be so hard on myself, but..... Make your comments for the Giveaway  on the post here (hit this link!)  Good luck and thanks for stopping by and reading!

"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

The mystery of why can't the bookworm read?

The boys loved putting on the "bobbies" hats when we had our own little mystery: who had robbed our flat while we were all sightseeing?

Good golly, great balls of fire!  I am NOT kidding when I say that I'm not sure how much longer I can "accept" this new Irene who doesn't read, who's not capable of reading because of problems with concentration.  I'm very much back in the POSITION of being able to read again, given that my daughter's health is, for the most part, on the upswing, and that I'm back in bed.  In fact, given how much I am recovering from the abuses my body and CFIDS/ME/fibro-addled brain experienced in the last two years, that is, between all the health crises in the family, I should be able to GLADLY escape to my book world, and certainly would have any other time in my life.  Heck, normally at any other moment in my life, I'm sure a crazy blood-thirsty gang of Viking would have had problems ripping a book away from me.  

This is a totally new me I don't recognize.  I don't like it at all and, frankly, I'm beginning to fear it.  Heavens, no matter how ill I've ever been, I've always been able to read.  Granted, I did get to the point in my deteriorating health where I was strict with myself and forced myself to read at all times, for fear of losing the ability to do so. And I reluctantly admit to reading some of the most awful junk on my really bad days (no titles from me on this count - I still have a bit of pride left!) when I had such extreme concentration problems.  Yes siree, I've read awful, flinching stuff when all is said and done, all in the name of keeping my brain from completely atrophying from this DD.

Forget the memory problems (pun: groan!).  I signed the terms to the surrender of that battle a long time ago and made extremely difficult concessions to the agreement, that of having to read a book in a day or in a single "sitting."

"Sitting"?  And how wrong is THAT word since I can basically only read lying down and only on my right side at that, in bed, no other way as long as I can remember?  Ha!  Given that I remember HOW much (?), I'm not sure how convincing that statement is.  But rest assured, it was my middle child, who's always had a knack for noticing the oddest things, who pointed it out to me back when he was about eight years old and he was absolutely right.  And I DO remember my mom being upset with me even when I was growing up, that I wasn't able to read from a sitting position.  I'm a bit of an odd duck, aren't I?

There's yet another reason that I'm afraid and upset about this inability to read.  Just as I've always used my "Russian-ness" as an identity that made me different from others as I was growing up and allowed me, I strongly feel, to avoid an "identity crisis" in college when EVERYONE was going through their "identity crises,"  (it WAS the 70's!) so, too, has "bookworm" been an integral part of my identity.

I've lost so much to this stinking disease, this CFIDS/ME and fibromyalgia, not to mention the migraines, the pain, the God-awful fatigue that makes you want to flow down the drain with the water as the bathtub empties.  I'm no longer able to garden like I love to, cook and bake like I yearn to, on a regular basis.  The couple of times I can do so a year, if I'm lucky, are an exception to the rule.  I long ago gave up on photography (or picture-taking!), swimming, visiting with friends.  I've not been to the movies since 1997 when "Titanic" swept the Oscar's, this a person as a member of a family that would often go to see three movies right in a row on a single Saturday or Sunday.  I no longer go to church. I cannot clean, iron...tasks I used to love to do because of the sense of accomplishment I always felt afterwards, if for nothing else.

As I torture myself trying to analyze what the heck is happening to me, I realize that in the last twenty years I've become more and more drawn to mysteries, and series at that, and have wondered why?  It took me a while to realize that the mystery aspect was enticing and appealing because it sharpened my deductive reasoning skills - a fancy way to say that I needed to think like a detective as I've tried to figure out my biggest mystery: what the heck was going on with, to and in my body, as well as my brain?

And why in the world the love of series?  Well, because it was so much easier to read a novel where I knew all the players and their histories and didn't have to kill off precious brain cells in trying to learn new people and places and their back stories.  There's not much I dislike more than beginning a book because it's just so hard to figure out what the heck is going on.  Lordy, even the font that changes from book to book throws me off my game.  All of this is so weird since that means that as I was reading 400 plus books a year in the last few years  (I kept a journal of titles, that's how I know!) that's an awful lot of unpleasant feelings at least once every single day. Was/am I a masochist? Coupled with how much time I would spend each day wandering the house trying to find a book to read, was in the "mood" to read (code word alert!), and given how much I was reading, I marvel at how quickly I must have been flying through those books!  And it's no wonder hubby had such mixed feelings about hitting up our libraries, hauling books home by the bagfuls, hoping he'd hit a home run with at least a couple of those books every few days.

A funny memory of my kids' childhoods.  At night when they would finally be ready for bed, once I got to the point where I couldn't always put them to bed anymore but hubby had to as often as not, the kids would run to my bed, attack and jump all over me vying for my attention, hyped up as usual from just being three rambunctious children, and demand to know what I was reading and how far along I was into the book. In the morning, when they would see that I'd had yet another sleepless night, they'd again invade my bed and want to know what I was NOW reading. Their biggest delight: if I had finished the book I was reading when they went to sleep, read another book as they slept and was into book #3 when they woke up.  OK, I never said my kids were NORMAL!

I'm trying every mind game I can think of and I still can't get into reading, this to a person who would walk down stairs reading, wash my hands in the sink while reading, brush my teeth while reading...the list goes on and on. In fact, I often tricked myself into doing a chore my body couldn't handle by reading and doing that chore at the same time.  I'm not saying I remembered anything I read while doing these things.  It was a bit like a roller coaster ride, fun while doing it but almost immediately forgotten.  And it got the job done.

Just as a smell can trigger the most deep-seeded memory and bring it it the foreground, I remember where I was or what my interests in life were back then, and I recall what crisis, happiness, indeed every twist and turn of our family's history at any given moment, all from just seeing a book cover.  Books are my history.

And the joke and anecdotes surrounding my reading are many. We were on our first trip to London, the entire family! The oldest was ten (trip first described in the post on 2/26).  We stopped at the bookstore at the airport (oh how I love to look at walls and tables at a bookstore and laugh when I see that I've read at least 75% of the books I see).  The gentleman remarked on how wonderful it was to see my kids zeroing in with excitement towards the books instead of the toys sold there too.

Before you get to "Oh, how sick can she be if she's flying to London, for heaven's sake!"  Wait!  

I held up a book that had caught my interest, but feeling very guilty about the bloody fortune we were spending on this vacation, plus so exhausted from the packing and planning, I was definitely not in peak shape even for my low standards.  I help up a book and asked the seller, "does this come in paperback?"  The man looked at hubby and hubby looked at clerk and I had no answer to my seemingly simple question.  I repeated, holding the book up even higher, a bit annoyed since my upper body strength has never been the greatest, I was exhausted, I was sure my makeup was rolling to my neck down from my face, I was sweating, I was becoming nauseated, my hair was getting wet from the exhaustion and all I wanted was an answer to a very easy question.  Griding my teeth behind what I'm sure was a very fake smile, I repeated, "DOES THIS BOOK COME IN PAPERBACK," a bit more slowly than called for.

The looks going back and forth were quickly getting on my nerves when hubby gingerly replied, "Uh, Irene...you ARE holding the book in paperback."

My brains was so slow that it took me a full minute of staring at the darn thing to finally understand what he meant.

Some days you just can't win.

In the meanwhile, I'll continue reading samples of books from my Kindle.  Something has to finally kick in. 

Reading, like I said, is me.

Visiting Kensington Palace on  Easter Monday, we discovered that Princess Diana had set up an  Easter Egg hunt for little children coming through that day, as well as a place in the basement where they could color and make all sorts of Easter arts and crafts projects.  What a lady!  

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Laughing from my sickbed starts...

In the past year and a half I’ve learned how to navigate the Internet, somewhat, finally!  It’s all due to my family’s latest effort to drag me, yes, kicking and screaming, into the 21^st century, this time with an iPad.

I call it the “idiot pad,” because surely it had to have been invented for those like me who absolutely fear computers. Or are constantly breaking them.  But more on that later.

I started, after a few months of leering at the iPad with disdain and suspicion, to fool around with the darn thing.

Oh yeah.  I missed a biggie here.  I’m basically a bedridden person.  So the idiot pad was perfect for me in that too.  I didn’t have to get out of bed to rediscover the world of the Internet.  Yes, I could get out of bed some days and try to communicate through computers which I feared and broke on a regular basis, but my brain was then so fogged up that it was a truly painful and awful experience for all.  In bed with my iPad, I could actually think!  And I love to think.  It’s actually one of my hobbies, sometimes to my family’s dismay.

But this blog is not going to be just about being sick.  Frankly, I try to hide my illness from the world, often successfully.  People tend to think I’m simply a hermit.

I, in turn, discovered Facebook.  Actually, if truth be told, I was forced to discover it, but that too is another story, for another time (hopefully!).  As I found friends from my past and formed a few new friendships, I now heard a new message from them.  For years and years people would say to me, you need to write a book!  Ugh!  I’m not up to it.  Now I was hearing, “you need to write a blog.”  Me: what’s a blog?  (I told you I was dragged into the 21^st century but you didn’t believe me, did you?)

Then after ordering books from Amazon on blogs – but never reading them – I thought, no blog!  I’m much too private a person for that.  I mean, I was upset when the number of people I’d friended on Facebook reached 13, then 20, then 25.  I kept having to up my “no more than” number.  I’m up to 40 now and that just about makes me break out in hives.

But I think the time has finally come to start a blog, or to at least try to start one and see where it goes.  I stumbled over one blog a couple of weeks ago, A Model Recommends, from a British model who’s just so sweet and funny, writing about beauty, skincare, all sorts of the fun things I do love.  In secret I’m a bit of a beauty products junkie, though not successfully since I….  Well, more on THAT later too!!  I thought to write to Ruth, our model, to see if she’d consider adding anything at all for those of us with, ahem, shall I say “slightly more mature skin?”  Well, I discovered, almost all on my own, that her mum had started a blog too!  What fun.

I then desperately wanted both of them as my buddies and that’s when I realized that if I didn’t want to become some sort of stalker crazy person, it may be best if I just go and try my own blog.  Even my hubby, who must win some sort of award for being a privacy nut, keeps saying I need to write a blog!  And I’d also just realized that you can learn everything and anything you want on YouTube, so inadequate computer skills were no longer a legitimate excuse.  (More on that later on too!)

And so I am going to try this new social experiment.

Most of all, I love to laugh and I love to make other people laugh.  No, not in a Billy Crystal or Joan Rivers way (can you tell I have the Oscar’s on my mind?) but in a funny next-door neighbor sort of way.  So, I do hope this blog will be funny or add a chuckle to your day.

And I love to read…in fact, I‘m a bookaholic but due to a few crises in the last couple of years I’ve, for the first time in my life, not been able to read.  But I am starting to regain that concentration, so there is hope.  I belonged to a small book club I co-started in our small town when my oldest was in 3^rd grade (she’s 32 now and is a teacher with her own self-contained autism classroom – forgive a mom for bragging!) and this was before anyone had even heard of a book club, even Oprah.   But we fell apart after about 15 years once retirement started in, as well as politics creeping in….

So, books, yes.  Politics, no – not in this blog.  Fun, yes, seriousness, yes, at times, as in how to live more easily with chronic illness, tips and so forth.   Books, a bit of history…how, even, to get more sleep, a biggie for all, I’m discovering, much to my dismay.

Beauty, yes!  Fashion, yes!  Gardening, yes!  Cooking, yes!  Travel.  Being a mom, a wife, a best friend, yes, yes, yes!  Even a bit…ok, perhaps a LOT, of musings.  Certainly ramblings, which I’m so famous for, will unfortunately, find their way into this too.

But most of all, all with a bit of laughter.  It helps cover a multitude of sins and helps ever so much to get us through whatever problems any of us are going through!  Such a cliché, I know, but there you have it….

So, kick up your feet and join me in what I hope will be my new adventure!

All best,

Upa