Weaving Change

Sunday, January 21, 2018

Morning. Again. I woke up this morning around 4am to record a dream.  In it I had returned to my apartment in a huge, old building only to discover that, “I don’t…..”.

“–live here anymore,” my dream companion finished for me.

Not scary, not dramatic.  But I realized in the dream he had been kindly accompanying me all night, already knowing that I was returning to a place I didn’t live anymore.

What I remember is his warmth, his lack of surprise or judgment and his willingness to let me show him what was so important to me — where I thought I lived.

No, I don’t know what it means.  And coming before the prospect of a major surgery, I refuse to let it spook me.  But it has reinforced for me that things are always changing.  The best laid plans of mice and men….

Where do I live?  — Where things are always changing. Right now that is most clearly illustrated in my health.  In fact, it feels at times that my health journey is driving the entire show.

Regarding the metastasis of her breast cancer, a friend said,  “One day I’m at work and the next day I’m in the hospital and they are pumping fluid off my lungs.”

My cancer has not returned or awakened, yet.  But the consequences of the initial disease and chemo are coming home.  One day I’m weaving away on my first 3-day weekend, and the same night I’m in the ER and the next day the word “surgery” is on everyone’s lips.  Major surgery.  Weeks of recovery.

If I have not learned the Buddhist lesson of change, life is passing, that even our emotions are just clouds before the moon, I am being given another opportunity to absorb it.

The instinct to anticipate as a way to prepare is so deep.  And yet, anticipation takes me out of the moments in which I am not post-surgery, not in pain, still able to cook and clean and weave and even work.  What to do?  I wish I knew.

Today, I will pick more things up off the floor, so that when I am hobbling around here clutching my poor, beleaguered abdomen, I will be safer. I will check the finances and pray for just enough to get by. I will stock up on cat supplies, vacuum the rugs and file the mountain of papers on the dining room table so I don’t feel so overwhelmed when I return from the hospital. So clearly, I am practicing anticipation.

But at the same time, I am planning my next weaving project — in a smaller format (2″ by 2″) on my little, hand-held looms.  It’s not the format I had envisioned, but it still involves making choices about colors, shapes, size, types of fiber and design.   I am still finding joy in the process of learning how to translate feelings and ideas into tapestry.

In the ER last week, I could look out my room door and across the bank of computers in the center to the wall and rooms opposite me.  On the wall hung what I guess was a painting.  (I don’t wear glasses when I feel bad;  I prefer a slightly out-of-focus world.)  I could not see any detail, but it was an abstract painting, darker on the top third and lighter below.  As the Fentanyl and nausea meds kicked in I began to weave it in my mind to make it more interesting.  I put in some sequences of complementary colors of similar value in the large light section and tried some shapes in the darker section.

A good friend who was with me in the room was dozing slightly while holding my hand. I leaned over the bedrail and explained, “I’m weaving.”

She looked at me quizzically and patted my hand.  “Whatever,” the pat said.

Life goes on, said Kurt Vonnegut.  Life as Weaving goes on, I say.

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The Drill and the Moment

Wednesday, January 16, 2017

It’s one week from my 62nd birthday. And I’m in the Center for Care and Discovery (CCD) at the University of Chicago Hospitals.  This is an unremarkable admission in some ways.  On Saturday night I came into their brand-new ER with symptoms of a bowel obstruction.  I have had this twice before, once where it passed while I was still at home, and once when I was hospitalized for a week.  That was in the early stages of my initial chemotherapy. I was terrified and convinced I was dying.

This is quite different.  The inevitable Naso-Gastro (NG) tube insertion is no different, and nothing to be envied once it’s in (a tube inserted up the nose, down the throat and into the stomach, is not comfortable).  But I was not terrified this time and not angry at everything and everyone, so that even the NG tube insertion, though it involved gagging, vomiting and crying was still not as traumatic somehow. Everyone was kind, I knew “the drill” as my sister and my oncologist call it.  “The drill,”  as if I were an emergency worker called in the middle of the night to the ER to assist with some minor accident scene –instead of being the minor accident scene.

Knowing the drill is immensely helpful.  It helps me to not make things harder, if that makes sense.  Just the week before I had met with my Spiritual Director and we had talked of staying in the moment, paying attention, trying to appreciate what I have.  I tried to practice that in the ER.  I asked for and focussed on my friend Sara’s hand as she held mine. I listened to the relatively quiet sounds of the room and the sounds beyond. After I got pain and nausea meds I dozed a couple of times. I thought of a gentleman across the hall who was very ill, as my surgeon went back and forth between us. I knew my situation was not life-threatenening; just unpleasant.

It struck me, almost like a voice, when the surgeon was preparing the tubes to be inserted in my nose, “Even this….”  Meaning, even this I need to concentrate on and be present to, not to try to flee into anger or sadness or panic, but just to be present. The surgeon encouraged me to take deep breaths, and though not something I could maintain, it helped me think that staying in this moment would be better than fighting it.

And then it was over and I was up in a room on the Oncology ward and beginning the wait for gas and any sign that the bowel was waking up, loosening up and “resolving” as the docs say.  As if, by using this word, that not just the obstruction itself, but my constricted, unhappy bowel and the larger universe that holds it were charged with relaxing, unknotting and “re-solving” this micro problem.  My obstruction would “resolve” and I could go “back” to my life.

Right?

No. That’s the corollary of Living in the Moment — “Back” is not a direction.”  The Moment – moments of life – don’t repeat themselves.  (Maybe that’s even the definition of Life – that which moves relentlessly forward.) No, I don’t go “back,” I go wherever the new moment opens up into. It is not a reward system:  if I stay open to the moment, if I am “good” then I don’t get back or get to go back to where I was before this interruption.

What I get is the next moment and all it will open up into.

 

 

 

Music Group: Another Day in Paradise

“Well, this is what my life is like now.”

This is David.  He sits at the long table with me and several others.  He wears glasses with large lenses, he has a sprinkling of hair on the top of his head.  He has a bandage on the side of his neck, one of those split kind that are meant to hold the edges of open wounds together so they can heal shut.  It is not a large bandage, but not a tiny one either. On his right hand covered in tape is one of those plastic things they put in your hand or arm, so an IV can be inserted at need. It has a plastic end like a big, clear bead.

He, like everyone else at the table wears a hospital gown tied at the neck and, in some cases, tied half-way down the back.  For modesty, people can wear another gown over the one “covering their nakedness,” as the King James Version would say.  But often on my floors this second gown is missing and one of the things I, and other staff, do is to offer to tie gowns shuts at essential places.  For modesty.  For dignity.

David is bent over a rather tattered blue paper folder, the kind with a 3-hole tab in the middle to hold papers.  The pages in this folder are printed in large type, the better to see them, and have numbers at their bottom margin.  There are no pictures, except on the first two pages, the Title pages, you could say.  Here there are small black and white images of Tupac, Aretha Franklin, Sam Cooke, Louis Armstrong, The Beatles, Boyz to Men, Ben King, Marc Antony, Mahalia Jackson, Simon and Garfunkel, Tamala Mann, Beyonce, R Kelly,  Phil Collins.

It’s Phil Collins’ song David is talking about, “Another Day in Paradise.”  David’s voice is soft and so is mine when I respond.  He looks as if he could sit through this entire group without saying a word.  Not withdrawn or hostile, just half here and half inside himself, as if inviting the world to go on around him, pay him no heed.

“You were singing along,” I say.  “You know all the words.”

“I used to have the album,” he says.  Used to.  The song is a picture in words of a man walking by a woman on the streets who is asking for directions to a place to stay for the night.  Not asking for money for alcohol.  Not asking for money for drugs.  Not asking for money, at all.  Not asking for a handout.

 “Can you tell me some place to stay?”  she asks in the song.  A person looking for shelter.

I am often taken by the details in this song.  Phil Collins has “seen” these men and women, the way I would say God sees us.  Sees us into being.  Sees our need, our poverty — and our inherent dignity.  — As the source of that dignity, I believe.

The table is quiet.  The other men and women around it sit quietly, listening to us.  Our table is near the doorway of this large room with a few chairs against the far wall,  chairs bolted together.  Outside the door are the sounds of the daily chaos of a hospital floor.  People calling out, other people walking by rapidly.  Doors creaking, pagers going off, voices raised in direction, repeating directions, “Wait in your room.”  “The Doctor is coming.”  “Kevin, can you help me here?”

The man in the song is embarrassed by the woman’s request, maybe he is embarrassed at being addressed by her at all, and so he crosses the street, whistling to cover his embarrassment.

“Is there anything else you would like to say?” I ask David.  The silence is hard.

I am the man in the song.  I am embarrassed by the dignity of a man who says, “This is what my life is like now.”  Who says simply, “I used to own this album.”  And doesn’t ask me for anything in return.  Who doesn’t even ask to be heard.

I have the audacity to come into a room of people whose lives I cannot even imagine, to ask them who they are.  In doing so, hoping to suggest that God has not crossed the street to avoid their questions.  That God hears and sees them, as I hear and see them.

I ask a lot of the men and women I work with.  And they almost always graciously respond to my questions.  Because I am the woman in the song asking for directions.  And they see me and share their dignity with me.  They direct us to shelter.

 

 

 

 

 

Portrait #1: The Setting

I want to write, finally, about what I do, when I am Doing Something.  When I am working.  My friend, Lorie, gave me a small “Decomposition book” to begin what she calls “portraits” of my people, the people I work with and who, with great graciousness, work with me.  The word itself, “portraits” helps make the endeavor less intimidating, more discreet.  A portrait: a picture within a frame — not a book, not an essay.  Only what I see before me, nothing more.

It’s Friday, four days after Christmas,. The hospital census is low, and two of my four floors are closed. This has never happened before in my 5-year experience. Some med-surg floors are closed too, 5 and 8, I think. In the administrative huddle this morning, the hospital ceo seemed genuinely stressed, rubbing the top of his head as he discussed the possibility of further cost-cutting measures.

We have just been bought out (again) by a more financially-stable hospital group.  It is one that appears to value their spiritual care department judging by their website at least.  But I think we, like everyone else, still feel vulnerable.  When the dust settles, will we be cut or “down-sized” or re-organized or whatever euphemism will be used to balance a budget that inherently counts spiritual care as non-essential?  My professional future is at least as unpredictable as my health future. Maybe I should be getting used to this.

I like holidays and weekends and other out-of-the-ordinary times in the hospital. I can feel the hospital slow down at these times, as if it were a living organism, slowing to a walk from its usual run. There is just a little more room for greetings, gossip, catching up with people and letting my groups run over-time as people need, instead of as institutional schedules determine.

Oddly enough, it’s an at-home feeling.  As if I were moving around these clean, linoleum floors in my slippers and sitting down with people over a cup of coffee (as there is no caffeine on my floors, this is only a sweet dream).  As if we were gathered around a table in some large institutional kitchen – but gathered together all the same -12 floors above quieter city streets.  We, patients and staff, are also are on holiday.  This binds us with the outside world. We celebrate the holiday by being more casual, more relaxed.

At one point in my music group, as we listen to a recording of Tamela Mann singing, “Take Me to the King,”  Misty, a nurse on-loan from one of the closed floors, walks in and, unexpectedly, starts singing along.  She belts it out with Tamela, swaying as she sings, and then throws open her arms as if to embrace us all,

            “Take me to the King, I don’t have much to bring …Truth is, I’m tired, Options are few,

I’m trying to pray, But where are you?”

                          “But still my soul, Refuses to die,                                                  One touch-will change-my life”

We are looking at her as if she were a diva, come to us as someone’s unlikely idea of a holiday gift for the hospital’s psych floors. When the song finishes, she says, “Oh! I love that song!” We, patients and staff,  look at each other as if to say, “Did you see that, too?”

To bring us back to reality, Louise, to my right says in her most disgusted voice, “Pain pill!”  Silence. “I said I want a pain pill, is anyone listening to me? How many times do I have to say it?”

Instinctively I reach out to her and put my hand on her arm, her back is exposed beneath the worn hospital gown.  She is not mollified and raises her voice, “I said I want a pain pill, a pain pill. I get them three times a day. Where the hell is my nurse?”

“Who is your nurse?” I ask.

“I don’t know.  How should I know?” Behind her, out of her sight, Misty, points to herself and silently mouths, I am.

“I’ll get your nurse, ” I say.

Behind her, Misty says, “She’s bringing it now.”

“Hmmph,” says Louise, “It’s taking long enough.”  Then, after a long pause, “I’m not always this crabby, I just need my pain pill.”

“So lord speak right now,  Let it fall like rain”

Welcome to my world:  the sacred and the profane sitting down next to each other and not-having a cup of coffee together for the holiday.

Hunting Memories

December 22, 2017

I guess I thought this first Christmas without Dad would be the same–just with him absent.  As if he were in another room, or perhaps away on the annual hunting trips he took with his father and uncles and cousin in the Adirondack mountains.

He took an entire week of his vacation every year to hunt, only a few times coming home with a deer.  The longer he hunted, the older he got, the less interested he seemed to be in the hunt and the more invested he became in just being in the woods.  He used to tell the story of unexpectedly coming upon his father one afternoon on the back of the mountain.  How he stood and watched my grandfather sitting with his back up against a Hemlock tree in the sun sleeping.  And how after that, hemlocks always made him think of his father, asleep there in the autumn woods.

He would come home changed.  He would have grown a beard, or the scratchy start of one.  He would be tousled and strange like an ascetic who could not communicate what it was that he had been seeking or had found.  He spoke of the dinners his cousin would make: huge (beef) steaks marinated for days and cooked outside.  A strange kind of asceticism, perhaps.  But the long days out of doors had worked something in him: gratitude, I think.  Gratitude for his silent father and the company of men.  And gratitude for the wonder of the woods: of moving for hours by compass and sun on the back of the mountain;  doing the work of  listening and watching, being part of the forest itself.

He would say in later years, that he was relieved when he did not see deer and have to decide whether or not to shoot.  And that after his father was gone, every year, he would look for a hemlock tree to sit beneath and sleep.  As if what he was hunting were not deer at all, but some communion with the memories the woods held.

These are my father’s memories.  –And, yes, my memories of his memories.  So I walk with him –or after him–in those woods.  Now it is my turn to look for a place to sit in the sun and commune both with what is gone and what is left.

It really had not occurred to me before this, that this would be a different holiday altogether.  That along with my father, and my parents’ home, that a time was gone, too.  And while some of the traditions of the holiday remained for us to enact, we were the ephemera now.  We were what was passing, while the forest of the holidays would remain.

Is this what it is like to age?  To see discrete lives within the times we live?  –Like a patch of sun beneath a great hemlock tree, a patch of brief ground illuminated, then gone?

Pause

It’s 8:45am and I am, blessedly, still in my pajamas, in my apartment with a cup of coffee within reach.  It is gray outside and the two large spruce trees, of which I can see two-thirds from my second-floor windows, are still.  Only occasionally  with the ends of some high branches nod or a slender branch lean in toward its sister tree as if to communicate.

It seems on a morning like this that it is possible to sit and pause.  And life outside the window also pauses.  No birds fly overhead, no thunder from the garbage trucks in the alley, no dogs barking, no steps on the back stairs.  Just a long moment.  Quiet; a stillness in me as much as outside of me.

But even so, my mind is doing the math: what time do I need to leave the house? What should be done before I leave?  What is on my list to do at work?  What am I forgetting?

I am forgetting how to be still. How to sit and watch the trees which are moving their arms now, and now quieting.  To sit and wait in this time of Waiting is no small challenge. I want to wait, but cannot.  To wait means to receive, to open, to be present to something I cannot see or know just yet. And that is too…frightening?  Or maybe it just requires of me more simple time than I feel I can afford.  As if I could hoard these minutes and seconds and spend them at another more importune  time in something that makes a reassuring noise and weight in my hand.

Not enough time.  Not enough time, I chant to myself as if it were a prayer. When the prayer could be: just enough, just enough time.  Or even, enough. Enough.  Even this brief pause is enough.

There is something moving in me, very like the fine tips of spruce in the air and also like the leaning of their fine trunks in and away again.  In the midst of this pause I feel it moving, that’s all.

 

Ice skating

Saturday, December 16, 2017, Beethoven’s Birthday

Last night, for the first time in maybe 20 years, I put on a pair of rented skates and stepped–very reluctantly–on to the ice rink downtown beneath an enormous, lit Christmas tree.  It was much worse than I had imagined.

I had hoped a couple of times around the rink holding on to the rail and I would balance well enough to wobble around sans handrail.  No.  It was not exactly like I had never been on skates before–but it was a very close relative to it!  I shuffled and clung and pictured bones snapping like twigs as I went down.

I had not wanted to go from the beginning.  At 3:00 pm I had texted Thomas, Are we still doing this? Yes, he texted back.  Period.  Later, as we waited in line, Thomas apologized for the wait to rent skates.  Oh, no, I said, this is the best part:  my bones are still intact and my legs are under me–no complaints!  Really, I kept looking at the people walking by, including one in a baby carriage, and thought, they don’t have to skate.  Why me?

I continued to enjoy every minute–up until the skates were on and I hobbled out to the rink.  If I can’t balance on them on dry land how will I ever manage on frozen water?  (I prefer my water in soluble form.)  And then we waited again, for the Zambonie machine to finish and for the rink to open. Finally, I had to sit down. My ankles were going to snap before I ever got out there!

Once on the ice it was, as I said, worse than I had imagined. I had hoped for the old, “it’s like riding a bicycle” thing to happen.  No.  Instead, it’s like I am a 5 foot and 120- pound 6 year-old–only this time my skates are not double-runners and my mom is not skating backwards holding my hands.  Seven months of chemotherapy, 3 months of physical therapy and this is how I treat my body?  My oncologist is going to kill me if I break a bone.

So I shuffle around the rink remembering only one thing, try to push off sideways with the blade, like I was cross-country skiing.  Of course, they have given me “boys” skates:  hockey skates, instead of figure skates. So every time I reach out to put the tip of my skate in the ice to push off, I nearly go head over heels.  I shuffle along behind a young man who shuffles behind a little girl who has 8 legs, going in every direction except forward.  I am thoroughly shocked when I find I have circumnavigated the rink once.  Oh my god, I am still alive and intact!

My second time around a gentleman my age standing outside the rail (on unmoving ground) looks me in the eye as I struggle by and says, “The Black Hawks are looking at you!” It is not long after that that I hear the music playing, Christmas carols, traditional versions and not too loud, but loud enough to hear over the squealing, laughing, and jibing of ice skaters.

And on the far side of the rink–the City’s Christmas tree glows enormous out of the darkness, ringed by skyscrapers with red and green lights, and even a few tiny lit trees in windows overlooking the park.  Snow has started falling, a light brush of flakes, almost imperceptible except on my face and against the street lights.  A hundred kinds of laughter ring up from the ice.

It is a United Nations on the ice, some Asian Indian or maybe Pakistani young men clinging to the rail, all with the stylish dark, big glasses young people are wearing, smiling self-consciously as I careen into them.  The young hispanic father with his tiny daughter sweeping the ice in front of him, Asian couples holding hands and skating freely in the center.  A hispanic parent watching her teenage girls calls out to me as I lurch past, “You are doing it!”  Couples speaking Polish, German, Spanish.

And all the young people who, as I bear down on them saying loudly, “I’m coming around you…watch out! Here I come around you,” as I  let go of the rail and strike out alone to navigate a tiny semi-circle of ice around their little group–in order to get to the rail again.

All the young people who look up at me, or down on me: my legs splayed, ankles turned in, bent over and wobbling, calling, “Watch out! Here I am! Coming around you!”

–All the young people who look up at me and smile, who extend hands and gloves and mittens, arms and bodies and say, “Here!”  Who reach out to me–reach out for me–smile as I careen into them or edge shakily around them, who extend themselves with their eyes and voices, “Here!”  –To me, as if they were so many young, welcoming shores and I an aging, rickety craft struggling against waves of ice and time,  “Here!”  Here.  In this moment.  Now.  God incarnate.