one tiny bursting moment

(giving thanks)

For the delicate dance of black-eyed susans in the morning sun.  For the kids running from the waves, shrieking in  delight.  For the spotless blue sky stretched wide and untouchable.  For the slender sea oats bowing slightly.  For the patches of clover that cool bare feet.  For the physical ability to clip my toenails.  For the knowing of the luxury of clipping my toenails.  For the flat sea and her quietly lapping waves.  For the lovers wading out far from the beach, wrapping their arms and legs together like tangled seaweed, bobbing face-to-face.  For the words spoken secretly between them.  For crushed ice on hot days.  For nights cool enough to keep all of the windows open.  For the way pain leads to reckoning.  For the fishermen standing in waist-deep water since dawn’s first light.  For the writers and poets and painters and preachers who make this magnificent and terrifying world into tinier, bite-sized pieces.  For the shape of seagulls hovering in flight.  For fish spit from the sea and writhing on the shore, flickering silver in their final moments.  For the odd shapes of egrets and herons.  For the end of chasing: excitement, attention, sexiness, and change.  For the elderly couple slowly meandering down the shoreline.  For my broad and unfeminine feet.  For my family’s relentless reassurance.  For neatly packed leftovers placed in the fridge.  For sorrow.  For the dream-world.  For the knowing of how little I know.  For the endless places I will never go, things I will never see.  For the enormity of God, whose glory is only meagerly hinted at by the beauty of these creations.  For the sound of footsteps behind me.  For the man in headphones who drags a metal wand, grumbling and searching for buried treasure.

wishes & rainstorms & brainstorms

It appears that the immunoglobulin infusions had no effect on my health.  The Infectious Disease doctor I see told me that- if I was to experience improvement- it would be in the first two weeks.  It has now been nearly three weeks.  Perhaps I will see some changes soon, but it is not looking that way.  My pain and fatigue are at their usual level- hugely limiting and often unbearable (what does that word really mean?).  While the failure of the IgG is demoralizing, it is only another disappointment in a long saga of ineffective treatment plans.  I will cross it off on the list of things tried and things failed.  This illness has made quite a comfortable home in my body, and appears to be holding steadfast.

Last night as I was falling asleep I found myself saying a prayer that I used to say every night when I was a child.  In fact, I thought that if I didn’t say it, something bad would happen, and it would be my fault.  It goes like this: God, thank you for today.  Please keep my whole family:  alive, safe, healthy, and happy tonight.  Thank you and I love you and goodnight.  I reasoned that A.S.H.H. was in order of importance, and hoped that God understood prioritizing.  When I was a kid I had this strange idea about mysticism and negotiation when it came to God.  Like, I used to make up these rules, such as, if I make it to the top of the stairs in 3 seconds or less then it means that my sister will feel better soon and we will have a snow-day.  And then I’d proceed to race to the top of the staircase, my heart pounding in intensity, certain that if I tripped, my future would be sealed.  What drama!  What ego!  What precious innocence.

I know, now, that mostly things just happen.  Our lives take gigantic turns as easily as a flower blooms and dies.  And after the initial terror of adjusting to this concept, there comes tremendous comfort.  I know, too, that I have a choice in how I think and feel, in the midst of any circumstance.  This is my true tool of negotiation.

These days, I pray less and less for recovery.  I’ve done so very much of that in the last eleven months.  Instead, I pray for insight, routine, and some window of understanding as to how all this suffering might be helpful in someway.  I don’t believe that prayers are questions or pleas that we submit to some giant orchestra-director in the sky, like a kindergarten note with: circle yes or no at the bottom.  For me, prayer is its own purpose.  When I pray I am expressing my heart’s intention to the universe as an act of hope.  Hope, faith, and intention have inherent power.  I pray because I am choosing to continue living and I believe in the holiness of all life; prayer is reverence for life.  This is a bit related to why I have a dandelion tattoo- an impermanent moment happening on my forearm.  A child-like fascination with the sacredness of every tiny, ordinary life, and the power of Intention.

I am thinking today of my 25th birthday.  I was living in Leon, Nicaragua and working as a backpacking guide for a non-profit.  (In fact, if you’re curious to see who I was in my former life– pre-July 16, 2012- look here at my former blog).  Anyway, you know the tradition of making a wish on your birthday?  Well, I was feeling pretty content, confident (cocky?) and complete in my life at the time.  So, in lieu of a birthday wish for myself, I decided to write out a wish for each of the people I care about, articulating the particular things I wished for them in the coming year.  Perhaps I knew somewhere instinctually that I was on the tail end of my free and autonomous lifestyle- that the wishes I had for my own life were soon to be put on hold for a good long while.  Or (childhood hocus-pocus & ego-tripping alert) maybe if I had asked for something, I wouldn’t have fallen into this dreadful turn of events and become trapped in this illness.  If if if if if.  Pointless thinking.

I’ve begun brainstorming what I might do if my health never improves.  This is the other kind of “if” thinking.  If I become homebound, what else might I become?  What can I do.  I am playing with thoughts of working from home, online courses and degrees, trying freelance writing, etc.  The thing is, I have to find a way to continue to CARE.  And that is easy somedays and not so easy other days.  Physical pain has the profound potential to wear a person down over time.  I have tremendous admiration for those who have been ill for years and decades and continue to care.

I recently read this:

I’m trying to live by heart, because it’s the one human organ in which I’ve never lost faith.  When brains break they usually seem to stay broken.  When hearts break, though, a surprisingly frequent result is a torrent of newfound compassion.  I’m so impressed by this; that in my heart I don’t feel angst or despair at all.  I feel a need to stand by my heart’s assessment, often against the endless evidence spewed at me by my head.  

Word up.