Home » Mechanics: Illness & Recovery » wishes & rainstorms & brainstorms

wishes & rainstorms & brainstorms

IMG_1473It 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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s