Wednesday, September 14, 2016

Doing Time with Lyme: An Introduction

If you know anyone with chronic lyme disease this story may not sound so strange.  This is a very brief version.  The full thing along with detailed accounts of treatments/tools/insights of all kinds (spiritual, physical, mental) will be found in the book Im currently writing about the healing path.  But here we'll start with the bare bones, how it went down. 

I was working full time, in graduate school, volunteering with one of the founders of the hospice movement, about to get engaged, and generally healthy (working out three times a week, eating mostly organic foods made from scratch), I loved to cook, even meditating regularly (vipassana).  Some time around spring of 2008 my body began telling me something was off, it started to fight something with all its might.  I would come down with something that felt like a severe flu four days out of every four to six weeks.  Im talking migraines that started at the base of my neck and crawled their way up over my head, making their home right behind my right eye.  Stab, stab, throb, throb.  Ouch.  Im talking diarrhea.  Im talking vertigo, like a hand has got you by the spine and is shaking you from the inside out.  Sometimes it was more like the room spinning.  Other times like I simply couldn't get my orientation in the world, like the ground wasn't the ground, my center wasn't my center.  That kind of thing makes a person nauseous like you wouldn't believe.  Im talking fatigue, yall, fatigue like you never knew existed, like someone emptied your fuel out and the reserves too.  Every four to six weeks I'd wake up those four days in a row and felt like a lead blanket was on top of me.  I literally crawled, inched my way to the bathroom, thankful for the smoothly polished wood floors, the coolness of the small white tiles that reminded me of my childhood bathroom.  Never in my life until that time had I become so acquainted with the floors of every room of my country apartment. 

You might be thinking at this point, well why didn't you just ask for help?  Where was your fiancé?  Where were your friends?  Where were your parents and other family?  It chokes me up a little to this day to write ponder that.  But maybe its also not so strange.  Im just an average independent, stubborn, prideful kind of being, like all the others that roam this earth, too brave or too stupid to ask for help.  I felt scared.  Scared at my core.  I was a caregiver most all my life.  It was my life to care and support others.  What is a caregiver to do when her vitality has run from her, her life source made itself scarce, her identity shriveled up collecting dust in a corner somewhere of her suddenly too spacious apartment?  It helped that these episodes only lasted four days at a time with several weeks in between.  In that time I was able to fool myself into thinking it wouldn't come again, I'd beaten it, this round of the flu again.  It wasn't all my own foolery.  Maybe two rounds into this cycle I went to my doctor.  They too confirmed it was just a persistent flu bug cycling back around.  After at least a year of this near monthly cycle my coworker pulled me aside.  She told me it was the running joke in the office how Liz takes all her sick days, leaving none to spare at the end of the year.  She let me in on the jokebecause she wanted to show me there was indeed something bigger going on.  She told me her brother became ill 15 years earlier the exact same way I was getting ill.  He had all the same symptoms, right down to the right hip pain and bouts with excrutiating chest pain.  Its Lyme disease she said, get checked for it.  Even though my fiancé and I had been going canoeing almost every weekend, I hadn't seen any ticks on me, let alone a tick bite, no rash.  She told me it didn't matter. Go get the test.  I waited another episode or so to do so as I was in disbelief, but for her urging I finally did so.  I asked the doctor for the test and they also were in disbelief because I had no bullseye rash or any new rashes.  It took persistence on my part to get the test but I got it.  Three weeks later I got a message from my doctor, full of condescension and mockery: You don't have lyme disease and you don't have mono.  You need to start drinking chicken broth and start eating meat.  Pick yourself up by your bootstraps, she said, and move on with your life.  Annoyed at the tone but relieved at the results, I did just that.  I convinced myself and let the doctor convince me that this was in fact all in my head, nothing to succumb to, nothing of consequence.  That was all fine and well, for a while.  I had a busy life and quite frankly had no time to be sick.  But a month passed by and my symptoms came back for longer than the usual four days.  It was going on a week.  Because I believed it wasn't anything big, as I was told by the doctor, I didn't take any sick days.  Instead I endured the fatigue, the pain, the discomfort, worked at my desk through it as best I could.  My boss, a former nurse, came in one afternoon and said, listen, I know your doctor said you don't have anything but youre clearly fading.  You can barely keep your head up.  I'll have someone drive you home.  Go get a note that you need bedrest for a couple weeks.  Go home.  Youre not dying on my watch. 

And so I went to the doctor from there.  Taking as many back roads as possible because it was hard to keep my eyes open, hard to stay alert.  The doctor was not in so I saw the Physician's Assistant (PA).  He was happy to oblige and write me the note for rest having examined my condition.  Just before I left the examination room, he came back in a little out of breath. After reviewing your chart a second time I called another supervising doctor to confirm what I found.  You have lyme disease.  You have several more of the markers required for a diagnosis.  I don't know why Dr.** didn't find this, its quite obvious.  You need to get on the antibiotics right away, said the PA.  I was livid with the snooty doctor who'd made the mistake the month prior, and elated by the news.  What I was feeling was real, had a real cause.  It wasn't in my head.  This is a definable, treatable thing!  I thought.  I'd be better by the time the month-long prescription ran out, I thought.  Yes, indeed, moving on with my life, my health, my plans, I thought.  Those thoughts and wishes couldn't have been farther from what would transpire over the next seven years.

That's right. It got bad.  Worse than bad.

And this is a blog on wholeness?  Reflecting back on this younger version of me, poor thing!  Little did I know what was in store for me.  The bad and the ugly, you can only imagine right?  Body falling apart, broke up with fiancé, dropped out of grad school, lost social life, lost job, lost some friends.  So wheres the good in that?!  That's the funny thing about life: within the pile of hot steaming doggy doo I was stripped of all my identities, my self of worth, only to find something more brilliant underneath.  Something eternal.  Something health status, relationship status, job status, and bank account have no say in: the Eternal Being that lies within each one of us, unaffected by good or bad fortune, a sense of Being that holds everything, an unwavering source of love, joy, peace.  Sounds too Disney?  Too airy fairy?  Unreal?  Yes.  But its the most real thing ive experienced.  How does one discover this state, how to get there, this land of experiential bliss?  There are infinite ways.  Which one will you take?  Return next week and many weeks to come to hear the paths that opened up before me, some intentional, some totally spontaneously on the waves of Grace.  We'll get there together over and over again. 

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