Stumbling Along the Path to Exhaustion and Trying to Find My Way Back

I love those rare, fleeting moments when my eyes can look directly into the face of the sun without being seared with light.  This morning, for about 10 seconds, the thick fog lingered between me and the sun and acted as a liaison, almost as if the sun and I were having a secret tryst, as my partner and I drove toward yet another Doctor’s appointment.

This is her third doctor’s appointment in two days.  I had my appointment with a nurse practitioner yesterday.  I’ve had a sore throat for over a month.  Never one to go to a doctor unnecessarily, this was my third time for this.  It turns out that I have Epstein-Barr Virus, which is the virus that causes mono and chronic fatigue.

I can’t remember if I blogged about my absolute bone-weary exhaustion right before I was diagnosed with cancer or not.  After my diagnosis, I just attributed that exhaustion to my body fighting off the cancer.  Now, I’m thinking it may have been EBV.  The blood work shows I’ve had it for quite a while and that it was even more active in the past than it is now.

I went on the CDC website and found out that 95% of American adults have EBV, but most of the time it lies dormant and does no harm.  But, sometimes it flares up and causes mono, or lingers in the system enough to cause chronic fatigue syndrome.  My viral load shows that I have a chronic problem with it.  And here, I’ve been telling people-including myself and my doctors- that Of course I’m tired all the time- I work midnights!  I have, a few times, told the doctors that I was more tired than usual.  This was the first time anyone checked me for mono or EBV (or vitamin B, I'll talk about that in a minute).  It has never occurred to me to go to the doctor for being tired.  I’ve just always dealt with it, I push myself until I get an hour or a day to collapse and sleep the sleep of the dead.  During those extra-tired times, on the nights that I work, I keep switching up what I do to keep me awake and reasonably alert:  read, crosswords, exercise, sudoku puzzles, draw, color, Kakuru puzzles, write in my journal, drink coffee, take vitamin B12, shake my head back and forth, etc.  The cues I look for that show me that it is time to switch activities include:  needing to read the same paragraph over and over in order to try to understand it, blurred vision, slowed breathing, illegible handwriting, forgetfulness, eyes crossing, stomach clenching, brain fogging, slurred speech...When one or more of these things happen, I switch what I do.  Lately, I have been physically tired to the point where exercise seemed impossible, reading has been impossibly frustrating, and my journal entries have started out fine, but ended in an unreadable, incomprehensible babble of scribbles.  Kakuro and coloring seem to be working best for me.  Kakuro uses some math skills and logical thinking, parts of my brain that I don’t use in everyday situations.  (Not to mention that they are really hard, and when I get my mind on finishing one, I get so stubborn that I won’t stop until it’s finished, and that stubbornness keeps me alert and wide awake.)  So, I’ve been doing those and they have worked really well.  Then, on the way home from work in the morning,  I stop at the rest area to sleep.  I tell myself that I’m only going to sleep for 15-20 minutes.  I make sure my car is locked, recline my seat, set the alarm on my cell phone and...hit the snooze and...hit the snooze and...sleep through the alarm.  Then I finally wake, stumble inside to use the bathroom- sometimes brushing my teeth and washing my face helps to get the cobwebs out of my brain enough to drive again, and sometimes, the guy that works there and I talk for a bit.  Then, I get back into the car and sometimes I make it all the way home, and sometimes I pull into the Meijer parking lot, or one of the malls, check to make sure my car is locked, recline my seat, set the alarm on my cell phone and…

So, I’m tired lately.  I’ve been missing church, not writing my blog, not remembering things, not getting housework done (except enough laundry to keep me in clean underwear), not working on training the dogs everyday as I’d committed to do.  Instead, I’ve been sleeping in rest areas, staring like a zombie at the TV because I'm too tired and have been fighting sleep too well, uncomprehending of what is being said, eating whatever Deb feeds me, forgetting words and conversations, and sleeping.  I’ve called in to work twice with this sore throat and exhaustion so bad that I was not safe to drive, let alone work.  I’ve been sanitizing any phones and other surfaces I use at work, thinking I might be contagious, not wanting my co-workers to all come down with sore throats and exhaustion.  But, since I’ve never french-kissed (or even dry kissed) a co-worker (okay, not since I was 18 or 19 working in the campus kitchen), I don’t need to worry about them getting EBV from me.

Not only is my EBV not catchy with casual contact, neither is my extreme vitamin B deficiency.  I seem to be the lowest in B that the nurse practitioner has ever seen, even though I’ve been taking a B complex at least 3 times a week to try to get some energy, and even taking extra B12 most nights that I work (it is supposed to give you extra energy, and on normal nights it does help).  None of it has helped lately with energy.  I even tried one of those disgusting tasting 5 hour energy drink things, which is a combination of caffeine and B vitamins, and it didn’t touch my exhaustion.  Well, my body is either sucking it all down like an old piece of dried wood does with water, or somehow I’m not metabolizing vitamins B for some reason.  That is part of my tiredness as well.  So, for the next 6 weeks or so- I’m supposed to sleep as much as my body wants, take B complex every day, B12 every day, sleep some more, take extra vitamin C, eat properly, sleep some more, get 2 vitamin infusions at the doctor’s office every week, and rest- not work.  (As I am writing this, Deb just gave me a quiz she found in a Diabetic magazine about B12 deficiency.  Turns out that it causes tiredness, forgetfulness, etc.  I have told all of my doctors that I am having memory problems, I have been telling them for the past 3 years, and none of them checked me for b vitamin deficiencies until now.  Turns out that the neurological problems-forgetfulness, confusion, and irritability can all be caused by B12 deficiency, not only that, but without early intervention, these can be permanent!!  I’m a bit mad about this, that no one thought to check this.)

Part of me is relieved to have permission and time to sleep.  Part of me, the bigger part, feels stupid and selfish for taking time off because I am tired.  I feel like I am cheating, and not being fair to my co-workers who will have to cover my shifts.  After all, doesn’t everyone get tired sometimes?  I feel guilty.  And tired.

In the Beginning: The Story of Zen Wintergreen

Written September 13, 2010

Sunday night, I left earlier than usual for work.  On my default radio station, NPR, was a show called “Radio Lab” and they were exploring language, the role that it plays in our communications with each other, our thought processes, and even our identity as human beings.  ( http://www.radiolab.org/2010/aug/09/ )  In a way, it reminded me of the chicken or the egg question.  They looked at language from a lot of different directions.  One direction they looked was toward researchers who studied concept words such as “blue” and “left” to see at what age people grasped intangible concepts (around age 6).  They went even further to see how adults would comprehend those words if their language skills were taken away.  I’m not going to tell you how they did this, or the result, but I will say I’m curious to try that experiment for myself.  Any volunteers?

I try to listen to that “small, still voice” inside-you know, the one that helps me know who I am in the world, the one that tells me right from wrong and now from then.  Well, one of the people they interviewed for Radio Lab, Jill Bolte Taylor, wrote a book called My Stroke of Insight.  In this book, she recalls her experience of having a stroke.  One day her small, still voice was silenced, along with her chatty voice, her voice that questions, her loud voice, the voice of her intellect, the voices of her whole world- were gone.  She couldn’t speak or understand language.  Words meant nothing, they were just sounds to experience in the ether.  She said during the interview that when there was no language for her, there was just joy.  She also said that she felt experientially connected to the world in a way that is blocked by the interference of language.  Wow.

Thinking about that concept reminds me of one moment that I had, about 9-10 years ago.  I may have told this story here before, but it bears telling in this context as well:

I was at the beach with Deb and my sister and her partner.  We were in the water at a very busy park.  There were kids laughing and splashing, parents throwing beach balls, geese flying over, college boys belching and grilling, dog tails wagging, babies squealing and teenagers trying to impress one another.  You get the picture, a lot was going on around me.  I laid back in the water, lifted my feet off the sand and just floated, with my ears below the surface and my eyes closed to the rays of the sun.  I could hear and feel the ripples of sound and movement in the water.  I could feel the sun on my face and the different water temperatures.  I could smell the smoke from the grills that the slight fish smell of the seaweed.  I could see shadows cross my eyelids as things shifted in space.  I also felt totally present in the moment and place where I was.  I felt connected to the people around me.  I felt present in my body, in the water, in the world, like I’d never felt before.  All of this happened in a moment suspended in a silence without words, without time.  It felt endless, but it was really probably no more than 2 or 3 seconds.  Then, the foreign invasion of language happened.  I found myself laughing out loud and thinking, “Zen!  This is Zen.  I am zen.”  Then I said it out loud to my sister and our partners, and “it” was gone.  The Zen was gone.

In my wold-up until the moment that the word “zen” popped into my brain, I believed that language had ALWAYS anchored me more securely in any experience, bringing life and reality to something otherwise not quite whole.  For instance:  there was the time that I saw an unfamiliar small green plant in the woods.  I pinched it and smelled it and immediately gave it the name “wintergreen”.  Suddenly my brain was inundated with all of the knowledge and experience that I associated with that word:  minty fresh strong smell, breath mints and gum, and now, surprisingly, not looking at all like anything in the mint family whose names I knew.  I catalogued those names, throwing them out of the wintergreen family one at a time for their dissimilar shape, color, texture (each named in an instant):  peppermint, spearmint, catnip, bee balm, lemon balm and maybe creeping charlie (which may or may not really be in the mint family, but it spreads like mint and has a slightly warm smell and pretty purple flowers).  “Wintergreen”, I believed that word anchored me to the experience of seeing it in the wild for the first time.  (After that exercise, I’m kind of surprised that I wanted to place it in the category with the word “mint” at all.  After all, mint and balm are not part of the verbal equation beginning with wintergreen.)

Up until my moment of zen without words, I had assumed that that word-anchoring, which widened my base of knowledge, meant also anchoring and expanding the experience itself.  But really, when the word ‘zen” was put onto the moment by me, I immediately left that place of connection and visceral experience.  I connected the experience with the word which connected me to all the other words I had read that describe the experience of zen, the theories, the koans, the philosophies that I had read in words about a concept of which I had previously had no concept.  I had, with that one thought word, erected a buffer, a wall of language around the experience.  I thought the word, the wall of language would hold that moment as one of pure unsullied existence, protected in the concreteness of solid words.  Instead, my wall of words cut off all of that connectedness which I had felt before the Word, then separated it into quantified and categorized information bits in my brain.  Just like that time of finding the wintergreen was not enhanced or expanded by all of the outside mental language that I attached to it.  That wintergreen moment was seared into my brain during that unadulterated cold/hot eye-watering sinus clearing brain fog burning experience of being in and of that smell, under a tree, by a small creek, the instant before the word “wintergreen” entered my mind.  That was the experience being seared into my being.  The thoughts of Altoids and mouthwash came in the form of words into my brain, fooling me into believing that now that I had named it, it was more real than the smell in my nostrils, when really it was all just words.  The smell, the feel, the taste of wintergreen were what was real.

Don’t get me wrong- as a writer, I love language, Words for me are a way of life, a way of defining life for myself and of defining the world around me.  I do my best to describe indescribable experiences and thoughts within the finite bounds of endless combinations of 26 letters and some spaces.  When really, it is in the silence of those spaces that authentic experiences and meanings lie.  The really important “things” in life are found in those spaces and silences, the smells and tastes, sounds and sensations in that moment before any word intrudes.

In the beginning, there was BEING.  And then came the Word and with the word came the illusion of the beginning.  And with the illusion of the beginning came the illusion of the certainty of the word.