My Bad Week, and a Messenger, a Cloud, and an Encounter

Ok, I have had an awful week.  I have felt so week that I have had to get my son to carry me up the stairs, I am short of breath most of the time requiring oxygen support, and I am frustrated because a week ago, I was walking to the beach very happily and feeling completely different. What has changed?  Ah hah!  Only my steroid dose.  My Doc rightfully had put me on a steroid taper, as I described in the last blog, to help me gain some leg strength back, reduce the thinning skin and swelling in my legs,  and stop me from looking so much like a chipmunk.  But clearly there is a balance here, and I’ve passed it, or I’ve arrived at a new dose too quickly for my body to adjust.   Luckily, we have gone back up to the previous dose and we’ll see how that makes me feel.  May take a few days, but I’m thrilled.

I tell you, sometimes you just need a kid.  Two days ago, before I recognized the steroid taper might be responsible for how horrible I had been feeling, my husband and I got a bit of a dressing down from our kids, and rightly so.  I was told that ever since I returned from Mass. I had been grouchy and unapproachable and this made the kids sad and unsure about what was going on.  They also gave it to the hubby about being around a little more and helping with whatever was going on with me.  Then, they both said that we needed to go back to the family dynamics that were so wonderful in May—eating together, being open and clear about what is going on as best as possible, being patient, and just being a family together in the face of the unknown, like we all are. Had I somehow forgotten all of this as I felt worse?  I know I had, and what good lessons to learn and keep learning. 

And then, today, there was the quick visit from my dear, dear buddy (the purple high top gal) who stopped my tears and made me laugh out loud at 8am this morning.  There is nothing like a belly laugh to change the whole day.  Add to this please that the hospice nurse arrived a few hours later, and changed my life again.  She goes right for symptoms and wanted me to increase the steroids even more because what are we doing here?  We are most interested in quality of life!  Yes, she is so right.  She addressed my difficulty in tasting, she upped the steroids, she gave me something for anxiety with the shortness of breath, and she gave me a way to take oxygen around in a car or a walk just in case.  She addressed me.  Ok, I love her.

How about some poetry:

Messenger (Mary Oliver)

My work is loving the world.

Here the sunflowers, there the hummingbird—

            Equal seekers of sweetness.

Here the quickening yeast; there the blue plums.

Here the clam deep in the speckled sand.

Are my boots old?  Is my coa toarn?

Am I no longer young, and still not half-perfect?  Let me

            Keep my mind on what matters,

Which is my work,

which is mostly standing still and learning to be

            astonished.

The phoebe, the delphinium.

The sheep in the pasture.

Which is mostly rejoicing, since all the ingredients are here,

which is gratitude, to be given a mind and a heart

            and these body-clothes,

a mouth with which to give shouts of joy

            to the moth and the wren, to the sleepy dug-up clam,

telling them all, over and over, how it is

that we live forever.

Cloud (Kay Ryan)

A blue stain

creeps across

the deep pile

of the evergreens.

From inside the

forest it seems

like an interior

matter, something

wholly to do

with trees, a color

passed from one

to another, a

requirement

to which they

submit unflinchingly

like soldiers or

brave peope

getting older.

Then the sun

comes back and

it’s totally over.

Encounter (Czeslaw Milosz)

We were riding through frozen fields in a wagon at dawn.

A red wing rose in the darkness.

And suddenly a hare ran across the road.

One of us pointed to it wit his hand.

That was long ago.  Today neither of them is alive,

Not the hare, nor the man who made the gesture.

Oh my love, where are they, where are they going

The flash of a hand, streak of movement, rustle of pebbles.

I ask not out of sorrow, but in wonder.