And then...

After the last blog, I went back out and had a very different experience.  I kept getting stuck.  This time the snow next to the gravel had turned to hard pan ice and the snow banks from the first plowing would sort of suck the tires sideways.   I dug myself out repeatedly, used rock salt, got pulled straight after being sucked into the retaining wall at the bottom of the driveway, and finally in the dark, got stuck up top, right near the shed I was planning to park in and could go no further.

To give a little context to what happened next, I'd been the last felled by the stomach flu which Sydney had brought into the family the week before.   I hadn't eaten much for a couple days or so.  Friday when I went out to try to get unstuck (of course the shovel and salt were in the cab of the truck which now was encased in ice and unable to be opened)   I was feeling pretty light headed.   My neighbor came and pulled me out (and finished the last pass on the drive)      By then I was feeling short of breath, light headed and some heaviness in my chest.

We rejoin our heroine as dusk descends, with the exit from the garage unplowed, trying to convince herself that if she just goes to sleep, all will be well.  
Wake up moment:  I am alone in this house.  The only body that I am responsible for now, is mine.   Would I ever have gambled with Gil's life?
So I call one, then a second RN friend, who tell me in no uncertain terms, that I need to get a friend to drive me, right now, to the the ER in Dodgeville.   So I do.
First blood test, EKG shows that I'm not having a heart attack at that moment.  But is that enough? Nooooooo.  They want me to stay overnight, have two more sets of tests and then a stress test in the morn.     ARG!!.  I was so convinced I'd be right back I'd left lights and music on, dogs in the house, and, as I remembered at 2:30 am, a pan of brownies on the table.  [I'd had experience with Molly getting up on the counter and eating a pan of brownies in the past.  The house had looked like a tornado had hit it.]
After seriously considering escaping,  the new Kathleen decided to          stay.
I realized that I hadn't spent the night in the hospital as a patient, since I'd given birth to David.  It's quite less comfortable than in the support services role.   I got through all the tests and except for a small electrical anomaly, it appeared that my heart was ok, though they never want to say that because women and heart issues present weirdly (or so they told me).

Then the truck broke it's front axel something or other drive shaft thing, and had to be wired up so it could limp into repair.   and then we got another 3 inches of fluff on top of the ice.

As this long post shows, there is no end and no beginning.  I am in the process of retooling my skills, my attitude toward self care, my perspective about being alive.    I'm growing and learning so much these days that I'm exhausted.   But no rush, I have the rest of my life to do it.

Snowplowing

Who knew?  Snowplowing is hard!! I did it once last winter, much, much less snow,  with a squiggly handwriting note from "the guy" on the door as I returned "I am so proud of you", and a lecture on the niceties of plowing which I had no context to retain. 
He always did it.  It was part of our grand bargain.  He did the wood and the snowplowing; I killed chickens.
This   is a blizzard.       The one down side to my new cabin renter, ace chainsawer, mechanic whiz etc. is that he's a professional snow plower.      That means when it snows he's out on the public byways plowing, not here.   I am going to need to learn how to do it, and since this storm is far from over, my learning curve is continuing beginning today.  Thank God I didn't get stuck!! It happened occasionally with Gil but he'd just get out the old tractor, put me behind the wheel of the truck and pull us out.
I don't want to even THINK about it!
I'll go out again in a little while and try to let the guy's pride in me flow through my hands and judgement.   God, I miss him.

Remembering memories

There's been a shift.  Though there still are wet days, it's more an occasional gentle rain and less the soul shaking sobs I seemed to regularly cycle through.  I find my self remembering memories of Gil these days, seldom are there new ones.  I suppose that's what happens as there are no new experiences going into the memory bank, but it makes me sad.  I knew that he would become a fading shadow of presence as the demands of daily life became louder, but I don't want to lose the sense of him that comes with the pain.

I've chewed and processed memories after memories, have said my regrets, forgiven myself for the most part, focused on the essence of Gil behind the somewhat dessicated  persona his illness had been reducing him to over these last years, and appreciated, savored, spoken all that I've realized he'd given me.  There will be more I suspect, and I'll welcome it.  But mostly I feel like I'm waking up into "this is my life; what I do makes a difference".

I'm starting to find out what my body needs, and taking better care of it.  I have a new cabin renter who is paying partly in labor.  He's a dynamo with a chain saw and able to move heavy logs like a Paul Bunyan.  Gil would have loved working with him.  I'm so sorry he's not here to have that kind of help with his lumberjack projects.   But I have it. And I'm comfortable asking for help!  Who would have thunk!?  I can remember my discomfort of last Spring, but oddly enough, it's gone.  I'm stepping into the rest of my life, and I feel startled by the newness of the experience.

My life has been so intense these last few years, that the relative calm seems almost pleasure.  This poem seems to capture it.

Any Morning

by William Stafford

Just lying on the couch and being happy.
Only humming a little, the quiet sound in the head.
Trouble is busy elsewhere at the moment, it has
so much to do in the world.

People who might judge are mostly asleep; they can't
monitor you all the time, and sometimes they forget.
When dawn flows over the hedge you can
get up and act busy.

Little corners like this, pieces of Heaven
left lying around, can be picked up and saved.
People won't even see that you have them,
they are so light and easy to hide.

Later in the day you can act like the others.
You can shake your head. You can frown.

A gentle man

My Dad was a deeply wounded man.  Adopted into a cold family; he did the best he could, but his emotional scar tissue didn't allow for much real connection.  In death I feel that he and I are free to relate  on a more essential level.
He was an introvert who had a naturalist's eye, as I do.  He saw variations of leaf and color; was able to identify mushrooms.  He loved to dream up projects in wood and other wild stuff.  The cabin he built by hand before I was born, had deer hooves as door handles; whatever you  might think of that aesthetic, it was the way he liked to play with making things out of wild and natural stuff.

He loved to think about how to make things.  Electronic "Heath kits",  cooking with exotics,  peeled grapes, beef kidneys, fiddle heads, he loved to fool around with making stuff.  He definitely had the pallet and curiosity that fostered our family's cooking gene.

But mostly he was a gentle man at heart who had bursts of anger at all the injustice he'd experienced.  He wanted to be a good man who would be respected, but on some level didn't really care what people thought.  He wanted what he wanted and never really learned how to empathize with others. But he wanted to.  Freed of his old psychological scar tissue, I imagine him full of curiosity, ready to be done with this world and move on.

My Dad died today

He was 87 years old.

It's Gil's Birthday today

And my dad seems to be dying, and the election is too unbearably anxiety producing,  and I'm coming to the end of the first phase of grieving, facing whatever is next.
Anniversaries sort of skip me back in time though at a new octave.  I remember all the different Birthday celebrations I did for him over the years.  The octave change is that there is only remembering now, no new memories will form.  And I need to keep moving forward.
That's  why it was so hard the other night.  I hate feeling that way, and almost went back and deleted that post, so I wouldn't have to remember myself in that whinny phase.  But it's part of the process, and if this writing is any good for me or you it needs to be real not pretty. 

I am learning, growing but it's not linear.  I need to remember that.  I also need to remember to, as my beloved Aunt Lou used to say to herself,
"Pull up your socks, Ms. Page!!"

It's hard

I'm coming off a big family reunion which culminated in a Gil remembrance, Gil story sharing around a big bonfire.   Everyone has left.  I'm left with a house full of dishes and chaos and love and the Gil celebration music on LOUD.   It was wonderful to hear all the stories, images, imaginings, LOVE,  that Gil inspired.
And he's not here.  I've finished off the dregs of an open bottle of wine and I can't stop crying.   He would have loved it and he's not here!   It's one more step away from him      and I don't want to.       I'm sorry, please, please come back.
But he's not coming back.
Even the essence of him, he's fading, fading, and it's so hard.  Why is it sooooo hard?   It's just hard.
Celia Cruz on LOUD LOUD;  I can feel him.  He wasn't who he was all the time these last years.  It was hard as he was gone even when he was still here, but I miss who he was at heart, at essence.
Get a grip.  Move on.   But it's so hard,  Why is it so HARD?
There are the dregs of a beautiful sun set over our hill.
The beat goes on.
great music
ask for a copy and I'll send it to you.

Learning curve

I'm an old dog, but I am learning new tricks.  I've gotten comfortable starting the tractor and brush cutting.  I even was able to troubleshoot a tractor problem the other day, and solve it. The world feels a little more three dimensional. Set backs (our bees are too mite ridden and probably won't over winter) or friendship strains feel like just part of the oceanic abundance I'm being pulled through.  There is the uncertainty of being at the beginning of a learning curve without the anxiety I felt when I was young. Now, not knowing feels like just part of the process not inherently better or worse than the things I'm good at.

I've had some good Gil dreams of late, and my hips/knees seem to be taking a turn for the better, but I'm not sure why the equanimity.  Perhaps it's the absence of the background hum of responsibility and anxiety around Gil's health.  The loss of him still can hit me up side the head with little notice, but I no longer wonder if this is normal grieving; it's the grieving I'm doing, and it sure beats hysteria or apathy.

I marvel at the willingness of friends and family to help me, or need me, the interdependent "pack".  Why has it taken me so long to feel like I'm at home in this particular space, time, collection of fellow travelers?? My 87 year old dad appears to be giving up on living after his current spouse was put in a nursing home, no longer there to give him the motivation to live of care taking.  He never wanted to be on the receiving end, to feel the ebb and flow.  Now he's left with numb emptiness.  I wish I could share the relish I feel at this low end of the learning curve with him, but it's not a word/idea kind of thing.  It's the air I'm breathing, what is helping me relax into whatever is next in my life.  "I am not done with my changes".
Here's the poem that line comes from.  I shared it at my retirement party, but it feels even more apt now.

The Layers  by Stanley Kunitz

I have walked through many lives, 

some of them my own, 

and I am not who I was, 

though some principle of being 

abides, from which I struggle 

not to stray. 

When I look behind, 

as I am compelled to look 

before I can gather strength 

to proceed on my journey, 

I see the milestones dwindling 

toward the horizon 

and the slow fires trailing 

from the abandoned camp-sites,  

Oh, I have made myself a tribe 

out of my true affections, 

and my tribe is scattered! 

How shall the heart be reconciled 

to its feast of losses?  

Yet I turn, I turn, 

exulting somewhat, 

with my will intact to go 

wherever I need to go, 

and every stone on the road 

precious to me. 

In my darkest night, 

when the moon was covered 

and I roamed through wreckage, 

a nimbus-clouded voice 

directed me: 

"Live in the layers, 

not on the litter." 

Though I lack the art 

to decipher it, 

no doubt the next chapter 

in my book of transformations 

is already written. 

I am not done with my changes.

He was a good man

I'm listening to his music from the celebration as I do most Sundays, allowing moisture to seep out when it will,  cleaning up from a cooking spree last night.   Things are good.  With a lot of "help from my friends" I'm clearing, cleaning, finishing, sorting.   getting ready for Winter.

I'm finding a balance of alone and communing, busy and open to ?.  I'm learning, paying attention to my body, my hips/knee, trying to figure out what the heck helps, hurts, can be bourn with out harm.   I'm falling into routines of food, watching Netflicks (always open for suggestions!) reading, dreaming, "getting things done".
 
And I miss him.  So much sometimes that it knocks my socks off.   Perhaps the time and distance allow how hard these last few years were and how much I was losing him to the fog, to fade into the past .  I'm left with the overwhelming awareness that he was a good man, something I appreciated less and less as we silted down into just surviving day to day.

I can't go back in time and tap myself on the shoulder and say "pay attention, this man, this relationship,  this time is GOOD, don't go back to sleep".    I am trying to appreciate what I have now, the farm, the friends and neighbors, family, $ and health enough to do and be wonderful things.  But he is no longer here
and I miss him so much.  I'm trying to appreciate the pain of missing him  too.

Dogs barking at the moon

I've been cooking up a storm these last few days. I hosted  a birthday party for the mom of our Uruguayan family who will be returning to Uruguay this November.  There were three families with kids and assorted other adult friends, an outdoor grill and all the magical lights left over from the Gil celebration.  After they all left sated with meat and cake, the dogs were barking at the moon and coyotes chimed in a chorus.  I felt like joining them.  I'm starting to feel that I am a small part, a member of several families,"packs", and  I feel my packs' caring and compensating for me as a slightly disabled elder.  My neighbors have been providing the energy and discipline to plow through the (despair inducing) basement back room and on to cleansing out all the residue left in the top part of the barn by various renters and family over the years.  We're going to set up a community wood working shop there in the barn with all my wonderful unused shop tools and gorgeous wood. Though I can't do the heavy lifting,  I have my role, my contributions.

I feel like I'm becoming aware in a deep part of my body of being part of packs, sort of the way years ago I became aware of being "a wild thing amongst wild things".  Out on the farm in Bell Center, before Adam was born, I noticed I was feeling anxious walking down to shut up the chicken house door after dark. When I asked myself why, I thought "I'm scared of the wild things".  An answering voice in my head said "but you are a wild thing too, with brains and tools instead of tooth and claw, you are a wild thing amongst wild things", and I haven't been afraid of the dark since.
This shift is from feeling separate, alone, to feeling as though I am sought after to fill a niche in a group being, a pack.  Perhaps others have felt this way about me for a long time, but I am only now relaxing into being a small part of a whole rather than independent/self sufficient.  In the past I feared being a burden or dependent.  For whatever reason, it now feels as though my gifts season, bring out the flavor in the gifts of the rest of my packs.  Together we are more than the sum of our parts, and able to feel the joy of pursuing together whatever dream is on the wind of the moment, amplifying each other's voices as we bark at the moon.

A pulse of despair

swept me off my feet just now.  Cleaning the "Oh My God!" basement back room, I'm running into all sorts of Gil byproducts.  It's so hard to find the energy to slog through the crap mixed in with the occasional crucial part of something which had been lost amidst the dietris of our lives these last years.  I can't just shovel it out, so to speak, since who knows what important long lost something I may find? How long has it been since the basement was clean?  Why should I bother?  The weather is gorgeous, the goats are contained (albeit eating my burning bush and balsams to a nub, opps) friends are coming for a Chinese dumpling dinner and I just want to go to sleep and not wake up again.  ever.
Despair, one more layer of the hell called grieving.  I've got to believe there is an other side to this and I will be in it, energized and hopeful a year or so from now.  But it's hard to believe.

Storm

There's a string of thunder storms passing through.  I took my tea up to the rock outcropping by the house (where we will be burying Gil's ashes and planting a Maple tree for him next Spring) .  I'd set up a "club house" shelter  for the 3 billy goats gruff but they hadn't quite gotten it that it was a great place to wile away a storm out of the rain.   They finally joined me and snuggled up toasty warm as the wind and rain, thunder and lightning flailed away.    
I needed that      I am soooo tired
Tired of cleaning and refinancing and  keeping track of things.
Perhaps all I need to do is find some shelter and hang out chewing my cud (or drinking tea as the case may be)  til I find the energy to move on.   Perhaps I'm trying to get on with my life too soon.  I'm having a hard time finding the thread of it right now.  I wonder if I'll ever be excited, inspired again?
Enough.
Midwest storms humble me, make me feel small in the good way that mountains and oceans do.
I found a poem this morning which spoke to me.

War Some of the Time by Charles Bukowski when you write a poem it needn't be intense it can be nice and easy and you shouldn't necessarily be concerned only with things like anger or love or need; at any moment the greatest accomplishment might be to simply get up and tap the handle on that leaking toilet; I've done that twice now while typing this and now the toilet is quiet. to solve simple problems: that's the most satisfying thing, it gives you a chance and it gives everything else a chance too. we were made to accomplish the easy things and made to live through the things hard.

Poems from the Pacific

I've just finished a week of body awareness work on the Pacific coast, which involved a lot of journaling.  Here are some poems from the week. They're not great poems, but they release a little more of who I am becoming.

Harvesting Moisture
from the Fog Bank that ebbs and flows in a dance with
the solidity of the rock cliffs.
My rocks no longer bear weight
They slip out from under me with no notice.
I seep moisture from my deep making them
even more slippery.
From where comes the moisture?
Saved up in a piggy bank of the soul from a long dry life?
Is it clear plasma from a deep wound that is healing,
no longer leaking life feeding blood?
No mind.
It is My Fog Bank wrapping me in it's no man land
of directionless free fall.

I am one fissure of multitudes,  here to release
the yearning,
keening,
despairing
pain
that washes us all into the next life.


The reverberations
in the bowl of my pelvis, ringing it, ringing it
with different harmonics.
This is my base,
in pain or pleasure it holds me.
What shall I fill it with?
sand? feathers? milk weed fluff?
It used to hold eggs-
time to fill it with cool nourishment, with joy.
"Weebles wobble but they don't fall down"
My breath breathes me, rather than me breathing my breath.
Ring it.


Melange of Seaweed salad
kelly green and umber brown
burgundy and moss
wispy waves, bubbles, baubles
veil dancing starfish purple, blue.
Anemones in attendance,
large open mouthed turds and clusters of shell encrusted young ens
amplify the stars.
Jamie's hat immerses me in
Seaweed vision.
My eyelashes sweep me into a kaleidoscope  of wispy color.
I swim my body electric
pulsing with the waves,
discovering my star amongst my weeds.


Listening
to the feel in the knee, the hip,
as I shift weight onto them,
are they fluid, aligned, able to bear me?
Am I?
Listening
to my appetite
Is it scarcity or abundance calling me?
Is it treats or Life I'm hungry for?
Listening
to the meaning behind the words,
to the action within the action,
the current within the channel pulling me   where???
Listening
to the whale songs within me
Whooooo are you?
Whyyiyyy are you?
Whaaaaaaaateee do you want?

I want   to hear.


REDWOODS
ARE
deeply rooted in time and place.
A fairy ring of young ens rise
around the dead.
I will be that empty center
someday
grateful for those who eat my residue
and reverberate with my good intentions,
as they grow into their own
sacred space.


The Fog Bank seeps
as layers within layers within layers,
as am I.
The ocean currents carry me deeper
"than soul can hope or mind can hide".
I dream I am releasing my particleness into the waves,
breaking, swelling, holding, frittering away energy on the shore,
awash with oceanic abundance.
There is no going back (longing, aching, exhaustion)
only forward,
diving into the Great WHAT IS
emerging to dance once more
in a new form of this thing called LIFE.
"I am not done with my changes"

Essence

I've been trying to commune with the essence of Gil,  I write as I watch the sunrise hit the western    fog above the blues and white caps of the Pacific.  I've come to a seaside haven called Sea Ranch for a week long  ?exploration? of what is essential to me.
I remember wondering in the early days, as I was learning what lay under the skin of my oh so foreign new love,  what his essence would have been without the culture of Jewish Bronx youngest son of an overpowering judgemental, loving and abusive father.  Gil was one of the most courageous men I've ever known, but it hid under passivity so as not to attract wrath.  Some of his impulsive generosity was to mask his neediness but much of it was his true delight in sharing the largess of the Universe, and his playfulness and profound joy in mastery of his body were all of his deepest self.  Now that that husk is powdered ash in the box by the stereo, I can focus more easily on who he was/is? on that more essential plane.  I would love to meet this most truly Gil in a dream and tell him how I saw him, and loved him and needed, needed, needed him to make me whole.
As I write the sun is creeping up from the blue, over the rocks and into the ever  green.    So    who is the essential me?  As I fuzz my eyes and try to see my deepest self as I have been seeing Gil, it's so much harder.  I've always thought of myself as an introspective, reflective sort, but I think I've been so preoccupied with care taking my tribe these last 40+ years, that I've neglected my inner sky.  That is my task now, this week, this year.  As I practice this eye fuzzing, it's so interesting to see friends and new folk and not get distracted by their packaging, their stories about who they are but just to feel their under the skin pulse.  I have no illusion that I am seeing all, but my nose is tuned to the essential.  
I look forward to the sun hitting my ever green essence.

Exploring

I'm living in the land of "I knew a man called Gil Miller, years ago", yet still mist up when I think about him.  What's up with that? One foot in getting on with life, another not wanting to leave the moisture of the loss.  I've gotten a few more days where I get an appetizer of the solitude in my future, enough to know I'll like it.  My mantra of "yes" is taking me out to a ??somatic/body workshop?? in California the week of my 63rd birthday.  It seems auspicious as I try to find the way into being more "embodied".
The WHO are you, WHY are you, WHAT do you WANT? still plays in the back room of my mind but it seems to need less thinking and more tentative exploring what's possible, tuning into how I feel as I try it.
Grieving is the oddest experience I can recall this lifetime, but perhaps there are many others equally surprising if I can just stay open and risk trying them,

Wake up call

I feel like I've been sleeping my whole life and am only just now being called to "wake up, wake up, this is your life, what you do makes a difference".   I used to say that about my middle schoolers, why it was that they were at that "ripe moment of desperation" where true change was possible.   I hope real change is still possible for me too.

I've noticed that I have a body, and that it's mine and that it's not in very good shape for the home stretch.  How to take care of it? Why to take care of it? Do I really want to live?  I have so little sense of what I (which one? the farmer, caretaker, poet, house designer?) want, in contrast to unconsciously gravitate toward (chocolate, giving away too much, imagining and then {exhaustion} trying to actually do it).

An old refrain, "WHO are you? WHY are you? WHAT do you WANT?"  is playing on the radio in the back room of my mind.      I don't know.      And I'm not sure how to find out, except to have patience with my patience.  I am still newly born to this single life where everything is newly experienced.  Newly, the same old with a different perspective.

This I know
I want to want to wake up; I'm willing to risk discomfort and put in effort to wake up.
I don't want to waste this ephemeral act of breathing.

The Gil Celebration is over

I just took Chris to the airport.
And now I'm facing the rest of my life without him.   I knew this would be one more level of realization but it still is knocking me off my feet. I know this is normal, I guess.  But not for me.  I'm not the emotional type. Has he changed this about me too? Am I ever going to get back to my old normal?  What the hell is normal? What am I going to do with all this left over food? He's not around to eat it!!! What guiding principal will inform my use of Time?  Will it ever get easier!?! How long? How long??
I just woke from a dream fragment where I found him in an attic apartment and he called out my name.
I want to go back to sleep and not wake up.

The Gil party is ON!!

My invites have been scattershot, apologies.  For those of you still reading, pass it on.

I've been focused on getting ready and may get back to musing on life and the hereafter,  after.

Getting ready

I'm getting ready for the party
and for guests who are coming
getting ready for a mortgage appraiser to say what our house is worth
I'm getting ready to start exercising and losing weight, learning a new relationship to my body, my only true responsibility right now
I'm getting ready to get my financial house in order, and to do my 2011 postponed taxes, to figure out if I can live on my retirement or will I need to use savings or go back to work.
I'm getting ready
to think and write and explore what's important about my living my life, to me
Perhaps mostly, I'm waiting like Ferlingetti in Coney Island of the Mind,
waiting for my rebirth of wonder
I have days of dry busyness
dreams where I'm hoping, searching for contact
wondering is it possible?
I'm in Limbo, not quite here or there, somewhere else instead
I'm waiting, getting ready for the next phase, the next step, the next "right thing"
but loath to leave the "vale of tears"
I know I have a precious resource, me, my mind, my body my idiosyncratic way of being and digesting my experience.
but I'm still just getting ready, I'm not there yet
waiting
waiting
for the rebirth of my wonder

Family

I just returned from a week out East with family.  It was an odd mix of overstimulating and busy and quiet  and slow.  It was good.
I found it interesting to watch the reflection of our family's genes, in all their different permutations, over the generations.  I saw my dad, almost 87, rigid and anxious yet wanting to want to get back on the self care wagon so he can continue caring for and snuggling his wife, and the marriage of a nephew who is obviously willing to give his soul to take care of his new bride who is recently blind.  We Pipers love to caretake, and vary in our skill levels of self care.  Each family member has his or her own take on the themes of creating projects, often around food and self sufficiency, athleticism, music, but with a large dose, for the most part healthy, of being of service to others.

But my Family is not only my root stock, it's also the folks I love who I've chosen to graft onto my life and share my life force with.  Gil's family has become mine.  Though we are very different by our nature/nurture inclinations, they profoundly enrich and feed my life, as I hope I do theirs.  Sometimes in my busyness I haven't relaxed into the openness and acceptance/curiosity to fully experience their world, but I want to; they're my family.

I returned to Wisconsin, and immediately was struck by how loving and generous my wonderful circle of Friends/family are.  Friends are the family I choose and though we don't share the same inborn life habits, their gifts support me, shift me, strengthen parts of me which may not be as strong as theirs are.

I became aware out East, that though we can get on each other's nerves big time, and though it's so easy to be critical of each other (it's so much easier to judge our own weaknesses in our sibs), seeing our family themes played out through many lives is comforting.  Just as I've been thinking that I need to shift from focusing on Gil as a particle, with all his specific in time attributes, to Gil as a wave, rippling through all the lives he touched,  so too I can feel all of my families influencing and carrying me forward into the future.
Progress.

It's a wet day

As I prepare to go East with family,     it's only me      packing.  I've been wanting to note that this grieving isn't all pain, it's only a small part and in an odd way almost a pain/pleasure.   There is also an altered state kind of lightness and disorientation of time and place.  I'm learning to appreciate this sense of groundless freedom (I have so much time! and so little obligation!) though at times I do still feel slightly nauseous from it.  I am overwhelmed by the love folks are showing me, and I feel slightly drunk from it all.
I'm listening to the music we put together for Gil's visitation and weeping as I water plants and fix the chicken fencing.  After days of busyness, it feels sort of good to be immersed in the pain of missing, missing, wanting him.  I imagine getting to the point where the pain will be less intense and wonder if I'll miss it.  I suspect I will since it makes me feel him so deeply.  You know, I was with Gil more than a third of his life, and he was even more of mine.  And I am so different than when he found me. But I'm a glutton; I want more!  I love weeping to his music.  Perhaps next winter I'll find the time to go through and listen to ALL of it, as he had started to do in that last month.  Now THAT will be a wet day!
I hope to have the Gil Celebration full to bursting with all of his music, and if I can really channel the Miller I'll have burned copies for folks to take.  He'd want me to, but I'm not sure I can without him

What the dead have to teach

Death is real; he is not coming back.  He won't be here again even if I really need him.  His body is gone, gone, gone; his hand will not use that handkerchief, or fix that remote.  I don't really believe how final this is.  I'm holding on to little things (some gross like his blood stained handkerchiefs) because I can't quite grasp this death thing.  It makes me aware of how, though we think we know with the front part of our brains, things like birth (there's two people and then, there's three, where the hell did that person come from!?!) and death (the magical thinking that somehow he's just gone away for a while and then we'll get a chance at a do over and he'll still be able to play billiards and fix the TV remote when it gets moody with me),    my body is going to take a looong time to realize it.

I wonder a little more about is there still a specific Gil in the hereafter, though I feel even more strongly that it is irrelevant to us on this side of the divide. What ever it is,   it's not for our knowing.  There may be     all sorts of possibilities, but where I am is here, now, with my life to be responsible for living.  All I can hold on to is the way Gil changed me and the way I live in this body now.   I'm still swimming in denial but I can feel the shore of acceptance in the distance.
Here's a poem (slightly edited by me) which seemed to speak to this.

Letting Go of What Cannot be Held Back by Bill Holm Let go of the dead now. Let them fall, sink, go away, become invisible as they tried so hard to do in their own dying. We needed to bother them with what we called help. We were the needy ones. The dying do their own work with tidiness, just the right speed, sometimes even a little satisfaction. So quiet down. Let them go. Practice your own song. Now.

Five weeks ago

He was alive.  The hardest thing for me right now is the odd, odd, odd way I slip between the pain of his absence and feeling like he died years ago and is just a memory.  When I get moving on tasks that need to get done, I can think about him and it feels so long ago that he was here and sharing this with me.  In an odd way that's harder for my heart than minutes later when I'm weeping from some bump of familiarity such as "his hands were the last that touched this gas can, grease gun etc".
I am such a newbie with this grief thing.  I had no idea what it would be like.  Thank God I like solitude and the pain of growing into undeveloped parts of myself, or this grief time would be even more devistaiting.  It's just not consistent; I never know how I'll feel.
But I seem to be growing into asking for help, and being open to whenever/however the help may come.  I took a truck load of dead hoses and broken plastic to the dump yesterday, and I have a plan for slowly, slowly making greater order out of the chaos or at least making it more my mess so I know where the hell things are!  I'm using "yes" as my mantra, when folks or circumstances offer me succour in whatever the form is at the moment, and then pull back before I am over full.  I'm trying to not offer loved ones more help than I can afford to give.  In short, I'm cleaning up my psyche's house and trying out new self care "habits".
I don't want to waste the fact I am so untethered, unmoored by this change; I want to use this loss to move forward into becoming more of who I can be.   And I also want to go to sleep and not wake up.  You know, he wanted both too.  And got them.   both.

It's so odd

I'm moving forward, mowing, taking tools in for sharpening. repair.  I'm making another attempt at refinancing our mortgage, and have applied for a credit card in just my name.  I feel like I'm moving into owning my own life, and it feels good and new and mostly dry.
Yet this morning I'm in a puddle because
every step I take forward into my new life
is a step away from Gil and my life with him at the center.
I know it has to be, and it is vast with possibilities, but I feel like a ground hog who has seen his shadow, I want to run back to burrow my head under the pillows and not wake up.  I don't want to lose the pain.  I don't want to look back on Gil as a memory from my past.   I'm not there yet, but it's coming.  
There's a ton of work around the farm and challenges like how to move the tractor and of course finally getting in the grove about his party.  The more I'm focusing on tasks the more I've got my feet on the ground.  I'm not ready yet to stop the free fall, but it's coming, and it makes me cry.  It's just too odd.

correction

The Celebration is June 23rd  (NOT June 27th as first printed)

A celebration of Gil

I'm going to rise to the occasion and have the party that Gil and I planned before he died.  It's not a memorial, it's a play date with him.  Spread the word, everyone is invited.

You are invited to a CELEBRATION

of what Gil Miller loved most,

People, Latin music, billiards, old friends, drumming, FOOD, games, new
friends, Jazz, dancing, and getting to know people.

On June 23rd  from 7 pm on.

Potluck

We will provide bonfires, music, a billiard parlor,  a grill and 
assorted foods and sodas (BYOB)

And a slide show of pictures from Gil’s life

Gil helped plan this party before he died

His request was that we invite

EVERYONE 

And that we play his favorite music

He wanted to come to it.

Please do, to celebrate him.

Come out 18/151 to Barneveld,  turn north on Co K  6 miles, left to 8470 Pinnacle rd.

Questions 608 795 4224

And then a crash

A tsunami of grief hit me late yesterday after a great, hopeful, empowering few days.
Go figure.
I started to question whether I could survive this.  My head knows I can, I will, but I'm afraid I won't be able to live without him.
Your mission, should you chose to accept:
Look at your partner.  See his/her pain in the butt characteristics, acknowledge the non thrilling tedium of day to day living together, accept the fact that actually it's very much tied in with how you relate to your own  pain in the butt qualities and the day to day tedium of yourself.
Then look at the marvel of this other being, body, pleasure/pain experiencer.  You have a fellow life traveler.  You have someone's needs and feelings to be tuned to and who is tuned to you.  You have a warm body to touch when you're feeling cold.  Feel full of gratitude for the package deal of who they are, and that they are with you; you are not alone.
Then tell them,  daily, not so much because they need to hear it, as that you need to hear it.  Love them in all their imperfection, because you can.

A glimpse

In the White Sky

by William Stafford

Many things in the world have
already happened. You can
go back and tell about them.
They are part of what we
own as we speed along
through the white sky.

But many things in the world
haven't yet happened. You help
them by thinking and writing and acting.
Where they begin, you greet them
or stop them. You come along
and sustain the new things.

Once, in the white sky there was
a beginning, and I happened to notice
and almost glimpsed what to do.
But now I have come far
to here, and it is away back there.
Some days, I think about it.

I've glimpsed  how it would be to be on my own, to own my life.  Today I helped two friends, men, take down and cut up three large hickory trees. I piled brush and logs.  I had intentions of overcoming my fear of chainsaws, of learning to use the little electric saw that Gil got for me last fall.  I didn't because,        I didn't need to, I have other ways to carry my weight.  It's not sexist to know that I won't be able to, don't need to, do everything.  Living my own life doesn't mean I have to do everything myself,   it means I need to decide what I want, what I can do, how to get help when I need it.  To decide what I want to give, because I want to, choose to, not because I have it to give and there is a need.  

I glimpsed something that I haven't seen since the days before my first marriage and children, me stepping into my own life.  I want to greet it, this beginning, and see where it leads me.

Three weeks

Since he died.  It feels like a year, except that I am still so intermittently, surprisingly wet.  I can't quite imagine in an actual year who and where I'll be in my life.  Warning, this blog is morphing from being a Gil updates to a Kathleen's confessional blog.  Consider discontinuing following it.
What I've learned so far:
*people are so kind and generous with me that I'm actually sort of uncomfortable
*I have a fear that being needy will make me vulnerable which gets in the way of my asking for help
*pride in my identity of being a self sufficient giver, may also get in my way
* I can learn how to handle new things like mechanical problems, if I ask for help.  
 So get over it Piper, join the real world of give and take, expectation and disappointment, "we all get by with a little help from our friends".  Because it is the real world, and the one I need to live in without Gil.

One of the oddest sensations is that I have few responsibilities tying me down.  I am free to go places, visit folks, spend the night, stand on my head (so to speak) I am not carrying the weight of his needs and limitations anymore, but, damn, I want it back.
Who would have thought I'd miss even the restrictions he put on my life, so much, so much?  I feel like the old Kathleen is dying and the new one has yet to be born.

I'm open to new poetry describing this birth, if you have a favorite.
Perhaps I'll need to write my own.

Taking care of business

Some of you have asked about contributing to Multiple Myeloma research.  I wish I'd posted it earlier, but there is a wonderful UW Hospitals fund called the Trillium Fund (Foundation?) that focuses exclusively on Myeloma research.  It was started by one of the founders of our support group.  Unfortunately, some of the others that say they do myeloma research, myeloma its self is somewhat of an add on.
I'll get more specific info by my next posting.

I'm making progress on closets, had my first head to head with "machines" when our riding lawnmower had 2 flat tires and a dead battery.  A neighbor helped, but I am coming face to face with
a) my discomfort around feeling, hell, being needy
b) Machine care, use, maintenance (I'm starting a learning log book to write down whatever advise I'm given in this category so I can read it later when I'm trying to remember the random number/nonsense syllables that I experience when folks talk about such stuff)  (better get over that!!!)
c) fear that I won't be able to afford to "hire out" those Gil tasks that  I have no natural affinity for.

SO
a) I think I may do as a friend suggested and develop an email list of those folks who have offered to help. When I decide I really need to use a "lifeline" I'll send out an email and see if anyone responds.  I won't have the discomfort of asking people directly and fearing that they are too polite to say "no", and hopefully being one of a crowd should make it easier for them to not offer.
b)  I've written down the numbers for buying the right oil filter and air filter for the lawn mower, and plan to change them this weekend, the start of my more nurturing relationship with machines!
c) I'm meeting with a financial person this afternoon to figure out how to manage my reduced income and see what I've got to spend to just pay people to do some of this stuff.

I'm starting to take care of business.
It still feels so odd.  Perhaps I've been keeping myself a little too occupied with activities and time with people I love.  I think I may need a little more time alone with the oddness of his absence,  to start to take baby steps into my life without him.

I had no idea it would be like this.

continuing

I will continue
writing, crying, cleaning, noticing, wondering
I am no saint; Gil is no saint.  Our relationship was not perfect.  But we were in relationship like two trees who are so close together that they start grafting into each other.  Perhaps greater distance, being a little more centered in my own life might have been "healthier", I might not feel so completely lost and disoriented now.  But I'm glad of the grafting.  I needed it, him, to become the more whole soul I hope to be.
His death is birthing me out into the world of credit card glitches and firewood and (heaven forbid!) machinery, alone, alone alone.  I need to step into being more than I've been before.  Without his death, would I ever have?  Not likely.   Do I want to?  NO WAY!  Birth is painful, not a choice, but it opens up a world of possibilities, another gift from him.

I remember when I finally decided to marry him.  We'd been together for 2 years, and I loved all the joy he was bringing into the lives of me and my boys. But I was terribly ambivalent.  I'd been married for 15 years before and when that ended, I'd felt like I was dying, feared for my guys, never ever wanted to put them or me through that again.  And Gil was soooo different than any man I'd known, not at all like the kind of man that Page/Piper women marry.  How could I ever risk committing my life to him?
I told him that I'd marry him "when I resolved my ambivalence".   But 2 years in, in the midst of a workshop we were doing, I realized,  I was never going to stop being ambivalent,  but commitment wasn't about knowing for sure the outcome, or the weather like quality of my emotions at the moment.  It was about possibilities, would marrying him open up vast possibilities for a life that I'd unlikely experience without him? yes   And it sure did.

Page/Piper women marry intellectuals, with spiritual and introspective leanings, men of authority who know the right way to do things and don't hesitate to instruct.  (obviously it's far more complicated than that but I'm sort of describing my step father)
Gil was a body man.  He played his body like a virtuoso musician.  Sports, music, dancing, he said that was the closest he could get to experiencing the spiritual connection I spoke of.  He felt his connection to the Divine in those moments.  His experience of his body was a psalm.   And he was gifted with the ability to enjoy.  Food, FUN, fooling around, games, people, people, people,  he was a joyful noise unto the Lord.  [listen to Cassandra Wilson singing Soloman Sang from New Moon Rising]

Neither body nor fun were my native language.      And they still aren't .  But he made me passingly bilingual  in them, a great moistening in my life!   And he was safe.  I never worried about him leaving me; I could count on one hand all the times in 27 years where he made belittling comments.  I'm afraid I was not so parsimonious.  But he would call me on it, and work through how he heard my unsolicited suggestions and what my intent was.  He didn't let me get away with too much shit, for which I'm eternally grateful.  He could have pulled me in more,  probably should have, but he didn't.  He freed me, to become so much more than I was when I met him.

So the pain I feel is a welcome side effect of how we grafted our lives together.  And I pray that I can keep the life force flowing through my Gil self so I can keep his wholeness in me, in my life.   Help me, I don't know if I can do it without him.

Disconcerting

Chris leaves today. I've bagged up most of his Goodwill clothes (actually from Goodwill as well as returning there. My guy was no clothes horse, and was sort of slipping towards "bag lady" fashion choices toward the end)

The "weeps" are more intermittent now, and unpredictable. I've actually felt the first wisps of anger (I've heard that's good) at the mess of empty CD cases and too jury rigged for me to use electronic spaghetti. I feel like I've been left holding the bag. But I'm mostly still stunned, and overwhelmed. I feel the need to get on top of...... fill in the blank with almost everything from our daily life, and also want to bury my head and not wake up. So much has been postponed or put on the back burner during this last stretch.

Slowly, gently, in time, in time, let the river carry you, there is love all around you, let it soak in, but I miss him! Slowly, gently, in time, in time. Life goes on.

One week

A week ago I woke up next to the guy in his hospital room and watched the sun rise with my yerba matte in hand. And now I am a lifetime away.

Someone asked about my "do over" comment. Here's what I was wishing.

If I'd known the Monday that he was first in the hospital, that it would be the last time to really have a conversation, oh the things that I would have wanted to talk with him about!! I started sleeping next to him Tues night, I wish I'd been next to him and snuggled him when he could have communicated more.

I wish I'd known we could have been more on top of the pain management. They were giving him morphine shots into his IV but that gave him ups and downs not the steady pain prevention of the continuous feed.

I wish, I wish, I wish I could have honored his desire to be back at the farm. If I'd known perhaps we could have gotten all set with Hospice before this last crisis and it wouldn't have been too painful for him to move.

I wish I could have realized how profoundly, deeply he was rooted in my body and soul, I would have wanted him to know how central he was to my life. He knew, I knew, but not like I do now.

I'm having more time where I'm dry. We had the baptism of his billiards parlor yesterday. All his pool buddies came and whooped and hollered,, God, he would have loved it!! We'll be putting out an invite for any and all who want to learn and be part of a monthly Billiards Bash.

And there'll be a firewood bee, and of course the Gil celebration in June.

Lot's

I wish he were here for

One step forward

Into my life without Gil. The emotional rainstorms abated for about 5 hours around the visitation, and have been only intermittent since then.

Is it time? or busyness that moves me one step forward from the loss?

I still speak everything as "we" but that's to be expected. Is it finally dawning on me that I will be continuing so "Pull up your socks, Ms. Page!!" as my Aunt Lou used to say??

The visitation, for those of you who couldn't come, was a perfect mix of music, food, pictures deep and funny and, of course, amazing people, from near and far, in miles and relationships.

I read all the cards that night, but am embarrassed to say that it wasn't til 2/3rds of the way through that I realized that the $ was getting separated from the cards. What an odd and wonderful tradition the gifts are, it's not so much a New England custom, but it feels so, so, that the community is helping to carry the cost of burying him, And I am grateful for that help. Just cremation was so much more than either of us expected. (but hey, what did we know?and never asked?)

The messages in the cards were dear and the food, great. Whomever made the marzipan bars and the nut macaroon bars, I want the recipes! and the chicken soup from my ex who never used to like to cook. It's a sign that people grow on. Perhaps I'll love to chainsaw.

Anything is possible, kind of like the Dr Seuss book "McElligets Pool" (If you don't know it, you should, with or without kids!)

Gil's bother Bob leaves today, Chris next week. It's the start of the next step.

A week ago he was still alive.

orbiting

Watching bluebirds nest, listening to "our music" one of our earliest and deepest bonds, I finally found a way to describe what I'm feeling. I've been orbiting Gil's mass, his needs and desires, areas to be careful of, passions, for so long , that it has become my gravitational center, what holds me in orbit. And I've lost it. I feel as though I'm shooting out into darkest space, without gravity to hold my feet to the ground except in fleeting moments.

I know that I need to find my own gravitational center in my own life, but it has been a long long time. I barely remember it.

And my fear, that this constant wet sadness will recede, and I'll be left high and dry with my body in the real world but I'll have lost the connection to him that this sadness gives me.

I don't want to lose this pain.

Silly

How silly of me to think that his pain in the butt qualities and the exhaustion of the last few months (years?) would mitigate the enormity of this loss. It's a little terrifying to realize how unprepared I am for this.

I want him back!

I want a "do over" of this last few months.

I want him back.

Putting one foot in front of the other

Pictures for the slide show, "arrangements" for the body, feeding the family, moving the chickens into summer pasture, it's all so foreign without him. I'm moving but it's hard to feel where I am in space and time. Thank goodness for all the help from friends and family.

Hope to see you at the visitation on Thursday, and the party in June. His spirit will be there.

Visitation

We are going to do a visitation on Thursday evening from 6 to 8 at the American Legion Hall in Barneveld. We'll have a slide show of pictures, and feel free to bring cookies or a snack if you want; we'll have soda. No open casket, just us, and a lot of folks who loved the guy.

We're still planning to do a Party/memorial here at the farm in June that Gil and I had been planning for a while. It will be all the music and games and drumming and food that he loved, and EVERYONE will be invited. He had hoped that he would be here to enjoy it; but his spirit will be.

When I can get my feet under me, I'll write some more about this last phase. There were some powerful moments. I am surprised by the awe full size of this chasm in my life. I still can't believe it.

Death

Gil died at 12:30 today, Easter Sunday. He had about a half hour of eyes off and on open, perhaps some recognition. Chris's recording of our chimes and rooster crowing seemed to bring him back to the room and then he let go.

Learning Curve

I'm learning a whole new way of looking at benefits and costs with Gil now. It's not about future benefits it's only about now. I used to be so ON turning and massaging, "greasing" his butt to prevent skin break down/bed sores. Now, the pain it costs him to turn is not worth it; his body won't be around long enough for bed sores.

When they discontinued the IV antibiotics I feared we'd be setting him up for secondary infections , pneumonia, return of the knee infections etc (which might indeed happen) but the pain of those, IF they happened, could be handled with morphine, and indeed pneumonia might help him slide over the edge, gently, they say. Who knew?

He started spiking a fever (probably the myeloma, it truly IS a raging fire now) and I had them give him a Tylenol suppository. Yes the fever came down but turning him hurt him. They said a fever doesn't hurt him. We can keep him comfortable through morphine and Haldol, the fever costs him nothing now; it's part of the process.

I'm on the bottom of a whole new learning curve. All my hyper vigilance to avoid problems, to minimize pain, maximize possibilities has changed. There are no more possibilities beside a gentle death. Now needs far less intervention than the future used to.

The Madison skyline over the lake is starting the magic moment of blushing. I AM going to get at least one more delicious sunrise from the best room on B6. (I thought it was going to be overcast/raining today) I am such a sunrise addict. I almost feel a physical tingle as the blush grows, hear a faint change in "the hum". I have tried so many times to catch the tricolored blush/gold/blue. Haven't captured it yet in wax or fabric. yet.

The first step in my new learning curve is just the realization that all my old ways of relating to his body, our joint plans and projects , my future, need to be learned all over again, with a whole new calculus. Everything has shifted and the first step in my new journey is just to remember that moment to moment. The next step of the learning will make it's self known as the first one soaks in.

Multiple personalities

There are only a few of the many people Gil is, left in the room. This thing is going so fast. Each day is like a week. Gil's ability to communicate was pretty much gone by Weds. Thursday we knew he could hear some of what was going on but not much of any response. When pushed to take meds or be turned, a flash of anger and resistance showed there was still somebody in there claiming ownership of the body. On Friday he was a little more present opening his eyes occasionally but not clear what/if he was seeing. He did blow a kiss to Chris and has been responding to our palm to palm pulsing hand holds which a friend just showed us, very soothing.

For the faint of heart, skip the next paragraph. As his body shuts down, amongst other things, fluid is collecting around his lungs and in his throat. The resulting gurgle is pretty disturbing, though they say it isn't to him.

But this brings out an odd assortment of my multiple mes. I woke up next to him gurgling and felt like Munches "The Scream". Fear is not a particularly big presence in the room for either of us I sense, except the awe/fear of staring into the complete unknown. There is a big part of me who is curious, another trying to be competent, and then there's sadness that sometimes sneaks up when I'm least expecting it and brings me to my knees with tears. I can't quite imagine life without Gil.

But that will be happening soon, very possibly today.

I wish I were good with the pictures in the blog thing, because we have the most beautiful view of the lake and the eastern sky from his bead. I wish he could see it, and the poster size photo of the farm view out the field that we have at the end of his bead. Perhaps he can feel them. I have been soaking up sunrises all week

Pain

Pain. Perhaps his gout came back and is making his joints so tender. Perhaps kidney stones can explain some of his symptoms. But the bottom line is we are in pain and trying to manage it with morphine and anti anxiety meds, and stroking and spooning in his hospital bed.

We're not going back to the farm unless/until we get on top of the symptoms and can back off on the pain meds enough so he can be

at the farm. The pain seems so unfair but what does fairness have to do with this passage? Gil is reaping the harvest of his heart in all the folks, in hospital and out whose love of him surrounds us both.

I feel so lucky to be included in the love he engenders in people. I wonder if I can internalize that reaching out to strangers and friends that Gil does? it seems so hard for me to do, but he has changed me.

I am not who I was when I met him, he's made me so much more open to people and pleasure and fooling around, indulging. I've been throwing money at him this last month or so. I want him to have the things that give him joy, he's so gifted at enjoying new things, new toys.

And games, bless his playful heart. My guys were so hungry for a playmate when he came on the scene, playing pickup stix or connect four, cards and magic tricks. I wonder if I can get into playing billiards? His beautiful new billiards parlor, can I embody him by learning to play?

I will be so much less without him. On our first anniversary we did the Meyers Briggs personality type inventory. We are exact opposites. We always said together we made a whole well rounded person. I want to keep him in me.

I am in pain, but mine can't be be helped with morphine. His finally seems to be. Bless persistent nurses.

Hospice

We spoke with Dr Callander and we're going with Hospice support. We hope to move him back to the farm on Friday, but if the move would cost more trauma than the joy it could bring, we'll stay on B6 with all the Gil groupies attending.

I've had lots of experience with Hospice during my mom's final years; this feels different.

It's hard

to believe

he's going to die

soon

(though the Ever ready Bunny has fooled us before!)

But now our support team is Hospice, and all the love he's engendered. We are being held in a warm and nurturing space. We can feel your love; it's alive.

Whiplash

Just as I posted yesterday's blog, the ortho resident came in and said that they thought that he didn't have a knee infection. Yea, relief!

[and I notice myself immediately putting my "we may be able to manage our way through this crisis" head back on]

And then the Hemo NP whom I have a lot of respect for came by and said that she thought they weren't interpreting the data correctly and she thought that he did.

[and my head whips back into "we're on the slippery slope"]

The day progressed, I checked in with Hospice again; they're just waiting for the word. Despite the pain meds and antibiotics, he's more confused, more in twilight sleep/dream land, and calling out with moans.

Clarity came later in the day:

Theory 1

He has a blood infection which is landing in several sites in his bod, perhaps even his heart valves. 48 to 72 hours of IV antibiotics should confirm or refute that hypothesis. If he isn't getting better by tonight, then infection is not the main culprit.

Theory 2

He's having an awful fallout to the intense chemo he got last Thursday. The worst would be this weekend and then he'd start getting better, but then I wouldn't ever want to uses them again which leaves us pretty naked chemo wise I think.

Theory 3

The Myeloma is back in it's roaring dragon form.

Theory 2 or 3 means Hospice as soon as we can get him home. After a phone call with Dr Callander, who's on vacation this week and we want to be part of this decision conversation. Gil is not able to be an active conversant right now; I'll need to channel the Gil that I've internalized all these years.

But it's time to decide. today I hope

I will post tonight

The moon woke me

around 3 am, and would not let me sleep. I cycled through my wanting to know (what quality of life is possible fighting a knee infection, what are the odds, should we do more or is it time for Hospice???) briefly on regrets (wish we hadn't done the knee replacements, perhaps it would have been better to quit with pneumonia than sepsis) and then just came in to be with him.

Who knows? We are where we are. Perhaps this and perhaps that but here is now, and that's where we are. He's getting a variety of antibiotics and fluids and time. He sweats, and then is dry. His knee hurts but is basically dealt with by pain meds and ice. He's present and then not. He's agitated some and then relaxed.

I'm going to look into Hospice and how that would work, pain management wise, if we went home. No decisions 'til it's clearly time to decide but the info junky in me wants to know what I can about options. Unfortunately I was never very good at chess and seeing multiple moves down the board. Good NYTimes op ed today by David Brooks about leaving the future it's options.

Several folks have called and wanted me to call back. I just don't have it in me. Please make do with the blog for now. We/you'll never have the ultimate good bye conversation; chew some more on the conversations with him that you remember and get whatever remaining relationship nutrients you can. He's already given you what he had to give. If there's more, believe me, I'll let you know.

a little food for thought:

The wilderness is not just a desert through which we wandered for forty years.

It is a way of being.

A place that demands being open to the flow of life around you.

A place that demands being honest with yourself without regard to the cost in personal anxiety.

A place that demands being present with all of yourself.

In the wilderness your possessions cannot surround you.

Your preconceptions cannot protect you.

Your logic cannot promise you the future.

Your guilt can no longer place you safely in the past.

You are left alone each day with an immediacy that astonishes, chastens and exults.

You see the world as if for the first time.

Rabbi Kushner

Lots of little joys

Bluebirds are nesting in the box out in front of the house

ALL the blossoms in the world are blooming right now, wild plum, and the pear and apples

The view down our ridge is gold with lush green stripes

The "billiards parlor" is painted a limestone gold and the carpet charcoal grey, with a lovely hanging fixture centered exactly over the teal green felt and his new 3 balls (billiard balls that is)

We've eaten well this last week, the best steak in Madison and the meat heaven called Samba for our 24th anniversary last Tuesday

I was blessed with three full out smiles (for real, this was no gas) by a 2 and 1/2 week old Sydney; God that girl has got me in her pocket now!

We took a brief road trip to Ohio to see David and it was wonderful, he's so, so ....centered, accepting, open and so loving with my guy, it was a delight to watch them together.

Watched "The Hunger Games" and had Shrimp Scampi.

And when we got Back from Ohio, Chris and Miya and Salla (C&M's beloved golden retriever) are here! for the week!

But

As we pulled into the farm last night it became apparent that Gil's knee was getting infected, pain, swelling, low grade fever

a late night run to the ER and he was admitted

the talk by the ortho team is of surgery.

It's our mid January issue of how do you handle a knee infection which if it's on the metal knee replacement, would require surgery.

And we're not going to do that.

We'll try antibiotics and see what happens with fresh blood.

His #s this morn an appalling red 7.1, white .6, platelets 3! arg

So we're back to harvesting as many little joys as possible

which will be a hell of lot easier if we can get

out of the hospital!!

to be continued, as they say, after more info from Docs. Dr Callander is on vacation for the week. But she will be very much involved by phone.

We're getting our "sea legs"

This weekend as a case in point.

On Thursday Gil got 2 units of red and one of platelets as well as additions to his chemo cocktail. He's now getting the sub cutaneous Velcade, oral Cytoxin (same but smaller than when inpatient) and a heavy dose of prednesone (100mg)

Friday was pretty good, though he didn't sleep much. Saturday was awesome! As the busy helper bees swarmed around working on the billiards parlor or running a water line so the new fridge could make ice, the guy was all over it. He even at one point decided to walk from our porch down the drive and around the barn to build his strength. And hit a few golf balls out the ridge as he went by!! He taught some folks the game of billiards and dove into his new project going through all his CDs (chaos!)

There were a couple of bumps in the road with some intense GI fallout from the chemo but we had the appropriate med so no biggy.

A good friend was taking us out to the best steak house in Madison per Gil's request and 2/3 rds through Gil was snatched into the Twilight zone mentally and physically and couldn't find his way back. He was so wiped that he couldn't even get himself undressed and into bead at home that night.

You may recall this happened last week and both times my gut says something is seriously wrong here . But this week I wondered if it was just going to be an up and down slow rise like last week, as the side effects of the chemo throw him around. Sunday had some stronger moments and Monday even more.

His numbers yesterday red (9.8, white 1 and platelets 9) Dr Callander tweaked the cocktail a bit, adding back Revlimid and some increased meds to hopefully get him more on top of the mouth sores. And a small dose of prednesone two days after the big one to see if it's the sharp ups and downs of the steroids which as causing us the turbulence. I'm realizing that this up and down of energy may be our new norm for a while.

So the future holds some potential adventures. If Gil looks stable this Thursday and gets tanked up on transfusions, we're going to do a mini road trip this weekend!! It's David's 33rd birthday this Saturday, and he and Gil haven't seen each other since last June, so with the help of David's best friend Sean, we're going to leave Thursday after the hospital, spend the night at my cousin's house on the near north of Chicago and then leave the next morn for Elkton Ohio. We should get there in time to visit Friday eve, Saturday day and Sunday morn before heading home. This is a pretty important visit for both of them. I think I have the supports and comforts in place to make this work and Dr Callander is, as always, encouraging us to go for it. So we will.

When we get back, Chris and Miya will have arrived to spend their Spring Break with us, and help get the billiards experience smooth and in the groove.

I suspect there will be some crash and burn moments in these next couple of weeks, but as we breathe into our new norm I think we can weather them. Denial helps. It really is all about enjoying life even if you have to do it in between rushes to the bathroom so to speak.

And, with a little help from our friends , the new refrigerator with ice maker, is IN! Life is GOOD.

The "C" word

The Cancer word sure get's people's attention But not all cancers are created equal, so to speak. Here's my non professional overview to the territory.

What the "C" word does is usher you through a portal into being aware of your mortality, a wonderful gift, and as long as your road is not horrifically painful, I'd say well worth the "fear" price of admission! "Cancer magic" as I like to call it gives everyone close to it a whiff of the JOY of being alive, of how good air tastes to breath.

There are benign cancers, "non invading and conquering the world of your body" tumors. But as in real estate it's all about "location, location, location". Gil's brain tumor wrapped around the base of the brain stem, or his desmoid tumor taking over the grand central station of all the nerves to his right arm as cases in point, with benign tumors like that, who needs enemies?

There are malignant tumors who have hopes of consuming as much of your body as they can, but they vary widely in aggression, appetite, speed and ease of being intercepted in their mission. Many, many cancers are slooow growing, no rush in nailing the puppy. Many cancers have no great plan of doing in the host, they just want a chance at sharing the food source, also able to be dealt with with minimal sweat. The most important thing is how early in the cancer's growth was it discovered, and how aggressive is it. There are cancers who are consuming as fast and furiously as they can and others who are tricky, tricky tricky.

Myeloma falls into that category. It's hard to get at, residing basically inside the marrow of bones, and disrupts the body's ability to make good, life sustaining blood, amongst other nefarious side effects such as kidney destruction, and bone fractures, two that Gil has largely been spared so far. The bitch is when you've found a drug which seems to keep it in a manageable sleeping state, it can and probably will eventually figure a way around that chemical road block and continue to take over the bone marrow, so new drugs must be found, All well and good as research attempts to keep churning out viable treatments.

Until it morphs, as Gil's did this winter into a house afire, blazingly aggressive form. Now the question is, can you impede the cancer without killing the host or making him want to die, which is just as bad.

Dr Callander is our knight in shining armor figuring out battle plans and tools. We trust and I'd say love her for her clarity about what's important here, quality of LIFE, and Gil's gift of enjoyment. I'm the man on the ground giving her feedback on the enemy's overt progress and how the battle plan is working for the guy. I feel like I'm a respected part of the team, which is a marvel after some Dr's attitudes in the past, specifically Mayo Clinic which was beyond arrogant and dismissive. But I digress.

So how do you talk to someone with cancer? I know the hesitation, not wanting to impose or seem to have a morbid curiosity about a private matter.

My rule of thumb is if you care enough about the person and what he's going through to listen, then ask! It's not like you're bringing up a painful subject which they wouldn't have remembered if you hadn't mentioned it. Believe me, it's a constant companion, and kind of like the details of child birth, they probably have more info to share with you than you may even want to hear. But if they're exhausted, or don't seem to want to get into it, then

just ask how they are. It's an open question which they can answer to whatever depth they want. And the kind thing is, to just listen. Beware of the urge to tell them about all the stories you've heard about folks beating that kind of cancer or of how GOOD they look. (it can leave the feeling that they don't look bad enough to be getting all this fuss, they must be exaggerating it) Unfortunately, looks, weight gain or loss, skin color etc may have nothing to do with how they are faring in their fight with cancer.

And ask is there anything you can do to help. Frequently the mundane "dirty laundry" so to speak can weigh folks down more than the hospital vigils. I can attest to the tremendous gift value of non guilt producing offers of help around the farm. I have never felt so loved or supported, and by extension Gil can feel that folk's love of him is a gift he can give to me to ease my burden.

So there you have it, Kathleen's handy dandy guide to talking with someone fighting the "C" word. Take the gift of feeling your own mortality through your caring about their's.

And NOTICE how good it feels to breathe.

We all get by with a little help from our friends

It's been a week, and then some.

We left the hospital last Thursday aft and after initial unpacking, while making dinner, I noticed that one of the rear tires in our new Prius was going flat very and fast.

I had nothing left in my energy bank so I used a neighbor life line. And even though he was in the middle of cooking his own dinner, he came. and puffed up the tire and followed me into Barneveld so I could drop it off at the tire repair place. Bless him.

And the next morning another neighbor showed up and helped me take down the porch storms and bring out the glider. Bless him!

Saturday Gil really seemed to be getting back to his old self, personality wise, albeit with a hoarse whisper as the mouth sores had moved to a new level of hellishness and gone down his esophagus. ARG!! Great visit with Adam et al for dinner Saturday night, Adam getting Gil untangled from all his electronic spaghetti. (there should be a special blessing for a computer geek son who is willing to refrain from rolling his eyes at his parent's incompetence in his domain, and still solves the problem!)

Then on Sunday two great visits where he talked and played and even "helped" a friend get the plow blade off our truck. There is a stiff learning curve awaiting me in the domain of "farm machinery" I suspect I'll be using a lot of mentor/helpers to "get by".

Monday was labs and transfusions but Gil started to slide into a profound exhaustion. By dinnertime he was basically unrouseable. We had another dance with "should we or shouldn't we come in" with the on call doc and opted for staying home. The fatigue continues but with longer reprieves.

We had been in conversation with a fellow who sells and fixes pool and billiards tables, who was planning to deliver a billiards table on Weds. I called a dear heart friend who is a professional house painter to get some advise about materials and method to finish off the drywall in the garage (to make it worthy of the grand table!) And he offered to come

and DO IT, with my unprofessional assistance. We were up til 12:30 Tuesday night and then Wednesday with Tom Kavanaugh, aka "a friend in need" we mudded drywall, laid the indoor/outdoor carpet I got and helped the billiards folk get the table all set. They were going to finish the painting this morning while we're at the hospital. I can't wait to see it!!!

Then last night my refrigerator died. I ferried the stuff still frozen enough into the deep freeze and called our local service man/friend who will check it out but thinks it's dead.

When things like this and the flat tire keep happening, all I can do is think "you've gotta be kidding!" It's actually kinda funny from a certain point of view. Besides, I'd been meaning to clean out the fridge; now I may get the ultimate in clean refrigerators!! and a chance to toss out goodies which have been lurking in the freezer longer than they should!

At the hospital today, red blood is stable at 9.4 (that's 10 days) needed platelets, some small change ups with the chemo and a request by Dr Callander for patience; it takes time to see results (though his IGG continues to slowly decline) and a request by us for no more quality of life suckers for treatments. Agreed.

So I am learning how to ask, be open to help.

I am learning to trust that if I need help and ask for it, I won't overwhelm folks with my neediness (my prime fear) . That people won't do more than they want and resent me (another big reason I avoid asking). But perhaps my biggest learning is that there is so much love around, for Gil, for me, for the act of helping a beloved friend. It's a kindness to let it be given, and to notice and appreciate and not take it for granted. I'm good at that.

It's oddly unnerving territory for me, along with saying "no" when I can't do something, or even (Heaven forbid!) claw back offers I've made during better times.

I am an old dog, but I am learning!

There are a couple other blog themes I've been working on: Tips for how to comfortably talk with someone who has a terminal illness and Conversations with Death as a regular companion. Look for them in future postings!

Writing this blog has been a great way for me to figure out what all is going on. Thank you for caring enough to read it. Several folk have said it's been impossible to write comments. I'll try to get the simple steps to do it and post it.

enough, The End

Better

He's better; the pneumonia is starting to clear. The mouth sores are still awful and the weird way the doxol messes up his taste buds, but no fevers and his immune system is starting to show signs of life. So he'll be heading home on Thursday night, barring any new bump in the road.

And I'm feeling more alive.

A friend came and spent the day with me reconnecting goat fencing and starting to clear the porch so we can set up the glider and Gil can sit looking out our field. It was so satisfying getting something done! And though I have no idea how the Spring will unfold, I can feel it coming.

Here's another poem a friend reminded me of which seems to capture my learning of the other night.

Zero Circle

by Rumi

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace
to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we're lying.
If we say No, we don't see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

I don't know

I've lived my life trying to know, to understand, to gather info and perspectives until something(s) become clear. I'm a "know it all" wanna be, who even knows so much, that I know that I don't know, as I like to mock myself by saying. But I'm finally starting to get it, that no matter how hard I try, there is too much, too, too much that I'll never understand, and accepting that is the only peaceful way forward.

As I was face to face with last night. Gil had been feeling worse as the doxol coated his mouth with sores and kicked his energy and immune system to bits. Yesterday he didn't really eat and had a hard time even staying awake. At bedtime he had some chills, very low grade fever, and then as high as 100.1. Dr Callander's nurse had said that should be the cut off to call into the hospital because he might not have enough immune system to make a higher fever (interesting, I didn't realize that swelling and fevers were the immune system at work, who knew?) Anyway, I called the on call doc who was up in the air about our coming in, and post call his fever dropped to 99.6, so I got him in bed. Then as he made noise in his sleep and had mini sweats I lay there thinking "I don't know what to do, I don't know, I don't know , somebody tell me, because I DON'T KNOW what to do". The not knowing was more than whether or not to go to the hospital, it was "do we keep on with these treatments or any treatments, do we hold on for the potential bump which could allow one more season of appreciating all the little joys which we've taken so for granted??" And I still didn't know but then I noticed that I was getting up and starting to dress, and I realized I WAS going to take him in. I didn't need to know if it was right, I was just going to do it and not knowing was OK. I think maybe I've been humbled into being OK with not knowing. Wouldn't that be a gift!? This guy's passage has certainly rocked my base way of being in the world.

So just the facts:

The guy's in the hospital with a low level pneumonia, and basically no immune system (to be expected with the doxol) and it's probably going to get a little worse before getting better. And yet he is already feeling better than yesterday. He got 2 units of red and one platelet and IV antibiotics and is back on B6 the unit he's spent so much time in that, I'm embarrassed to say, it feels safe and almost homelike in it's familiar faces and routines. (the nurses were all sad and glad to see him, and the cleaning ladies and food folk too!)

We hope to be back on the farm by Thursday or so. again. And I'm just watching it all and curious about what the heck is going to happen next. Because I sure the hell don't know.

Calling the question

After five days of dexamethasone, and the new chemo doxo, which we knew would be a body slam of exhaustion, perhaps nausea, mouth sores etc., yesterday was not a happy day. Though not full out psychotic as in the hospital, Gil was wandering without his feet on the ground of who he is, and he was getting air sickness, so to speak. Top that off with feeling weak and woozy, and the guy was saying he wanted to quit, and die.

We were heading in to see Dr Callander so it seemed the perfect time to once again call the question, is it time to let go and fade to black? Her response was, of course, it's up to us but we should factor in:

His numbers are improving, red blood 10.4, platelets 19, white 2.5, and even more importantly his IGG was down to 2800 from a crisis high of 4800 and his remission cruising norm of 1600.

His feeling lousy is an expected, temporary side effect of an aggressive treatment, not an indication of a steady decline.

His myeloma flare up is recent and we've only just started different treatments which, in her experience, could have several strikes before possibly finding one which could still hit it out of the ballpark.

We can stop at any point, and can (have) decide to stop any part, specifically, no more dexamethasone; it's just not worth it.

And remembering even last week, pre dex, life, the new car, playing pool, visiting with loved ones, food, listening to Celia Cruz, watching movies, snuggling with his well cushioned wife, ALL made life worth living. She thought that after these side effects fade, he should be at least as able to enjoy these as he had been before.

He decided to continue with those treatments which didn't take more life than they gave.

And so I am "calling the question" myself.

Though I don't have an illness which, without intervention, would end my life in a predictable time, I still have a choice. I can float through these rapids, and let myself get beaned by whatever rocks are in the way (which in many ways is what I've been doing these last months) (and which may not have been an all bad way to deal with sudden onset white water)

or perhaps I can take a little more responsibility for managing the well being of my body and soul, and try to steer a little bit. Perhaps this is the time to grow in some areas of my life which, up til now, I could get away with leaving on the automatic pilot of my early life coping habits. I don't want to waste the fact I have a potentially longer life trajectory than Gil. The only oar I have is curiosity/openness. I find myself asking, why chose to live??? I'm going to be really listening for what answers.