No firm resolve

It is not what you first think. There is no effort of will, no firm resolve in the face of this thing called living.  There is only paying attention to the quiet each morning, while you hold your cup in the cool air and then that moment you choose to spread your love like a cloth upon the table and invite the whole day in again.  Brian Andreas, Story People

I find myself back here over and over.  I tell myself in the lesser pain days I will make a better plan for next time.  I will communicate more clearly to my health care professionals how bad it is getting.  I will call a family meeting and make better support system for Dan and my girls.  I will be more honest about the scale on which I'm sliding.  I will find stronger faith and better bootstraps.

I'm lying here with my laptop propped on my belly and my cervical pillow wrapped around my head to eek out some words.  I think it is important because I've been writing in my head all day.  (Note to self.  Must get some kind of of modern electronic thing to dictate into when I am too sick to type.)  I haven't been writing blog posts, because I really don't want to do this anymore.

I haven't had a pressure incident since the last really big rain.  I moved it down on my ever changing list of medical priorities hoping I could get through the summer and nicer weather without seeing my neurosurgeon about a shunt.  A storm rolled in yesterday, and it began building in my body and then my chest and then my head.  I could not sleep.  I felt tortured.  Today I have been in the bathroom no less than ten times emptying every possible thing.  I am dehydrated.  I am nauseous.  I feel like I may have a stroke.  My eyes bubble and pop.  My head is numb and my face is red and hot and my cheeks have no feeling.  If you're still reading this blog you know I will not call anyone.  I won't go to the emergency room.  This may eventually be my demise.  In the meantime there is nothing anyone can do.  I keep a record of these.  I try to tell Dan, although I know he has to be tuning it out to survive.  I want someone to know.  It is never any less scary.  Ever.

I am on the last few chapters of reading a memoir titled Until I Say Goodbye written by Susan Spencer-Wendel, a remarkable woman who was diagnosed with ALS.  It's about her "year of living with joy."  I've gleaned many things from her very personal story I will carry with me in my own journey of losing myself and the life I wanted.  One of the most profound was the decision she and her husband made not to chase radical treatment.  In essence they eventually resigned themselves to the truth about her condition and got busy living and loving in a different way.  It's one way to deal.  It is a beautiful way to navigate unspeakable suffering and loss.  I admire it, and I wish I knew how to find the same path.  Still, missing from this book is the strangling in-between minutes and hours and days when the coping mechanism will undoubtedly fail, and you have to find something else to sustain you.

When there is no firm resolve in my human spirit I can only say His name, "Jesus, Jesus, Jesus."  This power and Life and Hope gives me breath.  I can only pay attention to the good He gives in spite of all this inexhaustible pain.  There is so much love.  There is so much good.  It tips the balance every time, and I choose life. Again. For you it is something that just comes like air, but for me it is a battle.  Truly.  I don't want to do this anymore, yet He makes me want it more than anything.  It's the invitation I accept because it's His party, and I'm an honored guest no matter what.  These are my bootstraps.

(There is much to update on my appointments, procedures, our financial need and hard decisions.  There are also beautiful stories of peace and joy already written quietly elsewhere that will be shared in time.  I promise to write an informational post soon for you.  Thank you for praying.  Tonight, please if you only ask God for one thing  for me will you ask for some relief for my brain pressure?  We suffer gratitude most of all and can scarcely move through the love you show us.)