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.

 

 

 

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.

Conversations in the dark

Tuesday Night, 9:30pm

An old woman stands next to me in the tiny kitchenette. She leans forward on her forearms to brace herself while she opens a bag of chocolate-covered almonds.  Her arms are thin and the skin covering them is mottled with brown age marks and the dark blue trails of venus blood and tiny scratches and scabs.  Her nails are longish but shaped and clean.  Her hands shake when she lifts the small paper cup half-filled with chocolate milk to her lips. This is my mom at her “midnight” snack.

“Did I wake you?”  she asks.

“No,” I say. “I was watching tv in the other room.”  She went to bed around 7:30 and slept a little, so I imagine this feels like the middle of the night to her.

I stay now and watch tv for a few hours after she has gone to bed, so she knows I am in the apartment.  Then, after she has gotten up once (or twice) for snacks, I leave her apartment and go to a guest room down the hall to sleep.

A few minutes earlier she had stood in the dining room in her pajamas and disheveled hair and said, “I want something.  But I don’t know what I want.”

I offered her chocolate milk and chocolate-covered almonds.  It is all I have to offer.

Earlier in the living room she said softly, “This may be a silly question, but what happened to Dad?”  She means my Dad, her husband.

“He’s dead, Mom. It’s not a silly question.”

“I know he’s dead.  What happened?”

“His heart failed, Mom.  He had congestive heart failure and his heart was weak and it stopped.”

“Was he in the hospital?”

“No, Mom. He died right here.  In the bed.  You were with him.”

“Why don’t I remember it?”

“It’s your condition.  Your memory doesn’t work all the time.  But if we talk about it enough, after awhile you remember.  You’re doing a great job, Mom. ”

“I don’t know about that,” and her eyes fill with tears.  “Where’s Dad now?”

“His ashes are in the next room.  In the urn.  He’s here.”

She shakes her head and her eyes fill again.  “I’m so confused.”

“You understand a lot, Mom.  But the night, it’s hard. It makes remembering hard. You will remember better in the morning.”  I am on my knees in front of her chair.  I am begging her not to hurt like this.

“I don’t know what to do.”

“Do you want to go back to bed?”  I want her to go back to bed. We have had this discussion maybe a hundred times in the 5 days since my Dad died. It seems to hurt her no less for its frequency.

“Okay. ” Will you be here?” she asks as I walk her back to bed.

“I will be here for a while, Mom.  Then I will go to the guest room and sleep.”

“Will you hear me if I call?”

No. “Well, I will check on you now and again.”

“If I need you should I go out in the hall and yell?”

“No, Mom!  You shouldn’t do that. The door will close behind you.  You’ll be locked out. Don’t leave the apartment!  You will be okay.”

“I’m so confused.”  Her head is on the pillow.  The nights are worse. “I miss Ken so much.”

“Of course you do, Mom.  I love you, Mom.  Please, sleep and don’t worry.  There’s nothing more for you to do.  You have done everything you need to do.  It’s okay.  Please, go to sleep.”

“I love you, too, dear.  Thank you for everything.”

“You’re welcome, Mom. I love you.”  I leave the bedroom door half open. When I was a child we called this “cracking the door,” meaning leaving it open a crack so my sister and I could see the light from the hall through the crack.

That light was always reassuring.  Just the light was reassuring.  It’s all I have to offer.

 

Falling Back

Thursday, November 2

My dad dies at 10:15 in the morning.  My mother is asleep next to him with her hand on his arm. The cat is lying on his legs, purring loudly.  My sister is sitting in my dad’s wheelchair next to the bed. And I am standing next to her.

I was on my way out the door to take some magazines to the recycling bin when she called, “Linda, don’t go!  I think he’s going…”   He had been taking those long breaths followed by longer and longer silences.  Just about the time I would think, he’s gone, there would be a startling catch in his throat and he would take a long gasp.

His head was tipped back and his mouth was opened at that unnatural angle that I see so often in the dead when I am working in the hospital. –As if he is frozen in the act of  taking a large gulp of air.

My sister, like her father, is a scientist: an organized, problem-solving, critical thinker. A few minutes earlier when he took one of those long, gasping breaths she set her phone to work as a stop watch.  I watch the numbers change so quickly, they can only be tenths and hundredths of seconds.  To the left the numbers climb more slowly until at 6 minutes I say, “He’s gone, Nan.”

The odd thing about death is that nothing changes. The cat is still purring, my mother is still sleeping, my sister and I are still waiting.  Everything–and nothing–has changed. He is gone and the world goes on.

Friday, November 3

Mom was up and down all night last night.  I would be watching tv and I would hear the scratchy shuffle of her calloused feet on the carpet. I would look up and there she was at my elbow, looking confused.

I would walk her back to her bed, lightly stroking her back and help her into bed.  Early on, I offered to sleep with her.  She said, no, I didn’t have to do that.

The second or third time as she climbed back into bed I heard her say to herself,  “I just have to get used to it.”

The last few times, as she put her head down on the pillow, she would say,  “Now, where is Nan?”

“She is home sleeping. She will be back in the morning.”

Then, later, again, “Where’s Nancy?”

“Nancy is at home, sleeping.  She will be back in the morning.”

“And where is Linda?”

“I’m Linda, Mom. And I’m right here. I’m not leaving.”

The last time I helped her back into bed and tucked the blanket around her chin, she said, “Do I have everything together?”

“Yes, Mom, you have it all together. You can sleep now.  I’m right here.”

Sunday, November 5

The time changed last night. We “fell back” an hour.

My mother is still in bed, sleeping, I hope.  –Although she has this habit of lying in bed with her beautiful, startlingly blue eyes open, looking at the ceiling and doing, I don’t know what.

I awoke in the night and realized I had slept several hours uninterrupted.  Even that much sleep makes a difference in the morning when I wake again.  I get up because I am cold.  How I can be cold in an apartment which is kept at 75 degrees is a mystery.  I don’t try to solve the mystery, I just take a hot shower in what was Dad’s bathroom and lay down on the love seat and stare at the ceiling.

Nan and I both feel Dad’s presence in the apartment, as if he is still here with us.  I don’t think Mom feels that way.  I think it comes at her in waves: lifting her on the crest of realizing his absence–then dropping her into a trough of forgetfulness.  Night seems to be the hardest time. She is like a small boat unmoored and she will ask, “Where’s Dad?”  “What happened?”  “Are we going home tomorrow?”

Nan and I are ruthless, I suppose.  When she asks we answer, “He is at the funeral home.”  “His heart failed.”  “This is home, Mom.”

–“No it’s not,”  she said fiercely, once, last night.  She’s right. This is not her home.  Not really.  Their home is gone.  Her husband is gone.  Their old pets are gone.  Many of their friends are gone.

And the world rolls on.

The clocks don’t stop.  Time doesn’t skip a beat.  We fall “back.”  But “Back” is not a direction time and life recognize.  They move relentlessly forward and we are carried with them, like boats, unmoored, carried on their waves.

 

 

Seeing Stars

I got up last night to crack the window for some fresh air and saw stars I have never seen in Chicago!  Not only Orion’s Belt, but all of him. And a host of pinpricks of light magnificent and calming. The only way to see the stars over the trees was to kneel in front of  the window. That seemed like a fitting posture to be in: kneeling before the stars and creation.

When the maintenance man came on duty yesterday morning at 6:30 am, he found my mother on the floor outside her door.  He helped her in and found my dad on the floor by their bed.  It seems my dad had tried to get up in the night to use the bedside commode and slipped off the edge of the bed onto the floor. He called for my mother and she made her way to the door.  But once outside, the door closed and locked behind her and with her short-term memory loss she did not know why she was outside or what to do.

Later, my father said he thought he had been on the floor for 4 hours.  My mother, thank goodness, appeared not to remember the incident. But later that afternoon, coming in from having her hair done and walking down the hall, she said quietly, “I was in the hall.”  I can’t imagine what it was like to be outside the door: confused, unable to get help, help herself or even understand what was going on.

“I was in the hall.”

Each day seems to bring a new hurdle.  Or maybe it’s that the trail we are on that winds through this dark night of the end-of-life, just descends a little more sharply each day.  I cannot keep my footing.  And neither can my parents.

But the worst of it, I will say, selfishly, is that my sister and I disagree on what these signs mean and how to respond to them.  I am the daughter that has swooped in from afar and said, “Wouldn’t they be more comfortable, more safe, more part of a community they fit into, in a good nursing home?”  My sister who had done all the heavy-lifting is fiercely protective of them and what she believes is their right to die in their (new) home.

My sister said to me yesterday, “I am the person that makes things work.  I will make this work.”  And she will, at whatever cost to herself.

I don’t know who I am anymore.  I believe I am the person who has learned in the last 15 months that I cannot, in fact, force the universe to fit my expectations, or desires or demands–no matter how just those are.  To my sister, I am sure this looks like I give up too easily. As if I am willing to sacrifice my parents’ deepest needs to my comfort.  She may be right.

From my perspective of having been seriously ill, I want my parents to be comfortable, cared for and to avoid the frightening accidents that can happen when you are alone and helpless.  She would say they are not alone.  But in fact they will be, for hours each day, maybe not long hours.  But hours.  And if neither of them moves out of their chair, maybe things will be okay.

Neither of us knows what will happen.  I would choose safety and comfort–even if it is medical and institutional in nature.  (Because I have had very good experiences with that kind of care.) She would choose to preserve what she believes to be their deepest wishes:  to be independent with dignity.  And she is their power of attorney and she has done an admirable job so far.  It will be according to her will.

Yesterday I got off the campus of the retirement home for the first time in 5 very long days. I can tell you, I was getting a little squirrely.  We only went into town to take Mom to get her hair done, and for my sister to get a massage (a late birthday gift from me).  I had 30 minutes alone.  I mean, I had 30 minutes when I was not trying to comfort my mom in her confusion or watch my dad breathing and sleeping. Thirty minutes while Mom got her hair done.

I spent it walking up and down a couple blocks of Maine street (I think that is really how they spell it) in the rain.  I went into 2 different chocolate stores.  (What can I say?  I need comfort, too.)  And, unfortunately, only at the last minute did I discover this awesome, independent bookstore called “Gulf of Maine.”  OMG, as the young people say, OMG.

I never got past the first table, just inside the door. It was filled, books layered on books, standing on edges, laying down, perched on piles.  Books about nature, sustainability, the environment, about wildlife, illness, thoughtful, respectful, award-winning books (ALL of them, award-winning!)  It was like finding a bunch of field guides to living on the earth in a thoughtful, funny, reflective, intelligent way.  It was like finding the end of the rainbow.

I only bought one book.  But I am desperate to go back and write down the titles of the others so I can find them in the library or buy them. What a find. What a gift. Most of all, it awakened my interest in being one of those writers who can look at tiny pieces of her universe and see a larger world reflected in them.  I wanted so much to read it all and learn from them.

Let me tell you, it is quite a gift to be my age and feel like you have found a piece of your passion or a new way to give to the world–to leave something behind.  Especially, if you believe, as I do, now, that it may turn out that I am not, after all, immortal.  That I may be approaching a time when I will only be able to see the stars from a narrow window of life.

If I am approaching a time when I will be on my knees more than I am standing, I want to learn how to kneel–so as to see the stars!