"I hear and I forget; I see and I remember; I write and I understand." - Chinese proverb

Sunday, June 5, 2011


I love the internet!  Really -- I do!  I love Yahoo and Hotmail and Google and Facebook and YouTube (I am not that fond of Bing, but whatever).  I hadn't spent much any time surfing the web until the late 1990s.  I had no idea how to hold a mouse (except by the tail as I tried to free it from the gleeful, barbaric jaws of a cat).  When we got the internet at the library where I worked the first thing we did ("we" meaning one of the night time volunteers, Marcus, and me) was look up porn.  Oh come on, what did you expect?  It was night time.  No patrons were in there (that we knew of, we didn’t check every stack in our haste).  We found it hysterically funny that you could just find stuff like this -- the teasers, that is; for REAL porn you'd have to get your credit card out.  Marcus and I declined.  Imagine our chagrin when we found out there was a "History" button on the browser; I had to get our other volunteer Nate, who was a teenager, to show us how to delete "History" before we were all called before the Board, or fired.  Well, I'd be fired, they were volunteers; but you know how it is, word gets around.
Not long after that I did indeed leave this job that I loved, not because of internet porn, though -- I simply became too sick to work.  Unfair!  I had already given up my thirties to Chronic Fatigue Syndrome (I'd found this out when, after two or three years of inexplicable illness, I read -- by chance -- a magazine article on CFS and yelled "Hey!  There's a name for what I've got!")  Now I was getting neurological assaults that seemed to defy description: I lost the use of my right arm and hand, my legs and feet became tingling and numb, and it seemed that bees or ants were crawling on my face and stinging my lips.  I had double vision.  I had memory loss.  I had very, very severe depression.  Can I say it again?  Unfair!  

Thanks to a chance remark from my very concerned head librarian and boss, however, I met my friend Margie Tietjen and that meeting saved my sanity and my life.  Margie made me look in the direction of Lyme Disease -- chronic neurological Lyme -- and suddenly the "T"s were crossed, and the "I"s were dotted.  It was around this time that my brother and his family got the internet.  Bet they never thought their wretched sister/sister-in-law/aunt would be lurking at their door every day for months, wrapped up in insulated flannel jackets in their air-conditioned home, jockeying for position at one of the desktops to research my appalling condition.
And there they were: The Facts.  There I found such validating information I could almost stand the crap I was going through -- because other people, sane people were going through it too.  Even the most esoteric of symptoms that my doctors rolled their eyes and yawned at (suggesting counseling).  Nope, this was all very real and I found out about it on the internet.  I made my world the world-wide-web.  The "average Joe" websites, the CDC for example, the Mayo Clinic and the Arthritis Foundation, were of very little use (they need a lot of culling in general), but there were other groups where we talked back and forth, shared our holy terrors and the stuff that helped, and soothed our sanity while discovering the appalling politics of this all too common affliction.  I joined self-help groups, found out about Forums and Links and what "OT" means.  (And lurkers, and trolls.)  

There were, in fact, "personal" web pages created by people like you and me, and during this long hot summer I dug out the journals I'd kept when I first got sick, and put up my own website, hosted free by Angelfire:  "A Long, Strange Trip: One Woman's Journey Through The Land of Lyme Disease."It was creative and affirming at a time when I could do very little.  I learned HTML -- hypertext markup language, an actual programming code.  I was so excited -- my virtual guest book was signed by people from all over the planet!  Because I finally had to apply for disability, I joined a web community called "Disinissues,” (disability and insurance issues), a strictly monitored but heartfelt group that was a godsend.  At a time when I felt as low as an ant crushed under someone's dirty shoe, the internet was keeping grace notes in my life. 

Little did I know, little did most people know, I think, what things the internet would do.  I often helped my (incredibly smart) nephews with school projects; we used the "Chronicle" books, these neat volumes ("Chronicle of the World," “Chronicle of the 20th Century") that I'd gotten from a book club.  (That's another thing.  Lots of people expected the internet would replace the public library.  Nope.  All three of the ones I've worked at have had to put sizeable additions on due to lack of space and volume of users.  If anything, I think access to the web is opening peoples' eyes to a brave new world, and they want to know, and do, so much more.)  
We spread them out on the kids' bedroom floor and immersed ourselves in these, and in other volumes that neatly or messily supplied information about -- for example -- Andersonville Prison during the Civil War, England during the Black Plague, and the life and times of Robert Frost.  I loved sprawling out with these books just as much as I'd loved spreading my own textbooks out on my parents' dining room table for college papers.  But when we were stumped and couldn't conjure up what we needed, the kids would stop, go to their computers and pull it up from a search engine.  Not necessarily Google.  There were others back then: Dogpile, for one, and Alta Vista.    Eventually, though, as we all know, Google became a verb.  THE verb.  (I wish I'd invented Google...don't you?)  "Instant gratification" takes longer to say than it does to Google.  Yeah, it's way too fast a world, I so agree...but you see, there are now so many worlds!
We seemed to find something new about the internet every day – every moment, for pete’s sake.   When I went up to my brother's, they might be listening to a live broadcast from the Grand Old Opry (my brother) or California Highway Patrol (my sister-in-law), looking up an old flame (all three of us), watching a video of spinal surgery (my brother again) or researching a plumbing project (guess who).  The kids were showing us how to make music playlists, downloading songs we hadn’t heard in decades.   More and more stuff, added by the second, to what is indeed an endless immeasurable font.  

Of course it wasn't too long before we realized that there were some people who hated the internet.  Doctors, for instance.  Suddenly their patients weren't asking just garden-variety questions and taking them at their word; patients came to their doctors armed with medical Intelligence, often with print-outs, watching as their physician's expressions changed from pleasant to slightly off-kilter to patronizing and scoffing and finally -- usually -- to loathing.  Some of my doctors actually rolled their eyes and said "the internet, dammit, I wish my patients wouldn't look stuff up on the internet!!!"  Yet we persevered.  The knowledge was worth it.  An informed patient almost forces a cavalier doctor to turn compatriot.  Work with me, we said; here is what I read, and I want to know what you think? 
One of the medications I was given in the early days of my maddening disability was called Neurontin.  Because of something called small-fiber neuropathy (you're looking that up, aren't you?) I had pain in the lower part of my legs that was so intense I couldn't even touch it with a thin sheet.  Through research or happy accident it had been found that Neurontin, an anti-seizure drug, helped manage this kind of nerve pain.  It was a saving grace for me, and I also found an online group of Neurontin users sharing their stories of varying reasons for using this drug, helpful hints and experiences lowering or ramping up the dosage, and side effects.  I did not have to sit alone in a chair and wonder.  My world, dark, was lighting up.

That was my introduction to the web.  There is no limit to the internet, of course; reviewing medical sites is only a tiny part of it (and so commonplace now that I've actually had doctors give me hand-outs THEY'VE printed from the web).  I've booked trips on the net (I even bid on one and got it from priceline.com).  I've rented cars and bought tickets to events.  (One event, really, but it was Cirque de Soleil).  I've looked up airport and aircraft diagrams, how to make homemade low-protein cat food, what you should do when you dye your hair the wrong color, landlord-tenant law, who wrote “Green Mansions,” the meaning of the word “amalgamated,” the difference between pagan and wiccan, my father’s bomb group from World War 2, and whatever happened to the people who used to star in “The O.C.” 

I've researched common pests of rhododendrons, local contractors' Better Business Bureau records, recipes for hot toddies, carrot cake and slow cooker kielbasa (in fact my cookbooks rarely see the light of day any more), what it’s like when you get your nose pierced, how to get free recycled furniture, what’s new in the Amanda Knox trial, where to buy a pink Candie’s tote, common urban legends, the weather in Woods Hole,  new books by favorite authors, a comparison of local electric providers (it did no good though), the fares and schedule of Metro North, a Scottish wedding blessing, how to wash vintage linens, and a photo of the ship my Blair grandparents came to Ellis Island in.  (And their names on the manifest.)

That’s all just a miniscule, molecular speck of dust floating in my cyberspace history.  There are sub-sets within sub-sets within sub-sets, of course.  And yes, your computer does know what you’re doing if you feed it cookies.  This doesn’t particularly bother me – yet.  If the powers-that-be (whoever they are) are so bored or paranoid they want to know what I'M looking at, then bless their hearts.  Something unprecedented did happen pertaining to browsing history and censorship while I was right smack dab in the middle of the whole shebang, working as a library assistant.  We had access to the records of our patrons' borrowing history and browsing history too.  We considered it privileged information, not something to be shared with any agency or agent.  Lately, with criminals who foolishly research "chloroform," "poison plants," and "homemade explosive device" on their computers, this has become an issue that demonstrates very well, cookies or not, what you do is no secret -- unless you read it in Shakespeare or Agatha Christie mysteries.  Which you haven't checked out from a public library, of course.

As far as censorship goes, it was a tough one.  A computer in the kids' section took care of this -- we set no controls, just hoped that a parent would accompany their young 'uns and sort of keep an eye on what they were looking at.  We all have a computer between our ears, though; I am none too fond of the concept of living your WHOLE life in cyberspace, even if it is available 24/7.   Kids have to keep up with the Jones'es;  there's so much competition.  But there's a real world out there too, and it got here first.   It's a tough little balancing act.  I get antsy when the wireless is down, afraid I'm missing something; it's hardly the end of the world but it can throw you for a bit of a loop.

So there's the Lyme website I created and there's Facebook, where I've tearily connected to old high school friends, lobbied against cruelty to animals and shared memories of growing up with the other townies (not to mention played some cruel games of Scrabble), and there's a folderfull of genealogical stuff my cousin Wallace, who lives in Edinburgh, found over there and there's then this; this, my blog.

A couple of weeks ago I watched a movie on Lifetime TV.  I know these movies normally feature recycled plots of student-teacher scandals, imposters emerging after twenty years gone and presumed dead, and the bad deal that’s sure to be your lot if you spend too much time chatting on the web.  They’re good to fill a rainy Saturday when you don’t feel like reading or cleaning your closet.  But what I like are the ones based on true stories; this was one of those.  It was set in a Spanish (Hispanic? Latino?) section of New Jersey...and there were shoes hanging everywhere.  I mean from telephone poles, clotheslines, outside banisters and balconies, shoes – kid shoes, it looked like, lots of them.  This is a custom I have never heard of and I was intrigued; I immediately wanted to look it up and find out the significance.  I haven’t, yet.  Hold on a minute, let me see what I can find.

Okay, I typed in “Spanish neighborhood shoes hanging.”  (And that's another thing: surfing the web is easy, but it's not foolproof.  You do need SOME training so you're not spinning your wheels.  Trial and error comes in very handy here.)  I skimmed the results; apparently this might mean that drugs are available for purchase here, or that a person has died.  Gang stuff, possibly.  I should’ve left well enough alone with that one.  I didn’t need to know that; I thought its uniqueness gave it a jen a se quois (excuse me for mixing cultures here).  A few days ago a Facebook Friend of mine was musing “Why do they call these things Q-tips?”  I don’t know if she ever found out, though several people suggested she Google it.  Well, of course it got me thinking, you know that’s a given.  I haven’t looked it up yet though…I think maybe I still need a LITTLE mystery in my life.

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