Sacred time and wrapping and connections

It is 7am Christmas morning, and even the dog is still asleep.  I think this space right here is the most wonderful of the year, this time alone, anticipating, thinking about the origins of this day, knowing that my whole family is upstairs sleeping and awaiting the day together.  All is quiet, I have a cup of coffee, I’m in my pjs, and I’m listening to sacred music.  It doesn’t get much better than this.  Maybe I feel this way because this space is so fleeting, but I’ll take whatever time I get.

I’m thinking about last night, Christmas eve, at our dear friends’ house.  This is now a multigenerational house with a lovely suite for the seniors.  The house is big enough to house all sorts of generations for Christmas—adult kids, a sister and her family of four, a married kid and her husband, and then all of us, even my mom.  Somehow, this large space feels so cozy with all of us sitting around a table together laughing, talking, watching our families intertwine and love each other.  What a sight and how lucky we are.

 I think I’ve gotten old enough or perhaps just more aware of everything, because I see the connections between all these people so clearly, from age 11 to 89.  My mom is talking to the new husband of our friends’ oldest child, I’m talking to my friend’s sister, Will is chatting with my friend’s mother about his time in Madrid, etc, etc, etc.  We are thoroughly engaged with these people we have known all our lives and with whom we have shared the wonder of our kids growing up; we have shared multiple hardships and innumerable joys as well.  Last night was joy.  Even though I was sitting next to the chef who also happens to be the pilot I mentioned previously, and I really do envy and hate him so; but I love him dearly.  Have I said this before?  If I were ever in a jam and my dear husband didn’t answer his cell phone, I would call him and he would come.  That is a remarkable feeling.  I know he would come.  I hope he and his whole family know that I would come running for them—always.

So here I am, about to take the presents in the closet down to the tree.  I had planned a very minimalist Christmas, but it always seems to bloom into more than I wanted.  This year we are introducing a new concept that a friend told me about.  We are going to give a little money to each kid, and have them research a local charity and give the money away.  Our lovely city is one of the poorest around; I want us to focus here, even though there are other pressing needs in the world.  I guess I’ll let them choose to give to something outside of Cleveland if they can back it up.  Hopefully some day, Christmas will be stockings only and charity. 

Do you all do stockings too?  All my life, stockings have been the focus of the morning.  Much thought, care, and re-gifting goes into stocking planning.  The gifts in the stocking are small, inexpensive things that are usually funny and are best if they highlight some aspect of the person who is to receive them.  Therefore, they require some thought.  My sister is a master of this; I think she spends some time throughout the year grabbing things she sees.  She is better at this than I, but I have worked a bit on it this year and we shall see.  Also this year, my lovely KT is making pancakes, or so she has said.  You can never be completely sure, but I’m looking forward to them anyway!

So, Merry Christmas to all, and happy holidays and a joyous new year!  I am feeling good.  Had a week off from nasty chemo and I feel as if my hematocrit (level of red cells) is ok.  Hopefully, all my numbers will be ok for treatment Friday. My sis will be here and I’m really looking forward to that.  Uh oh, I hear water running upstairs.  This year, the sacred space lasted about 45 minutes, but it was worth every second.

I sent this poem several years ago, I believe, but it is so right for my particular history with Christmas!  I now know that I am a wrapping control freak, and this poem explains it all……

Cheers!

In the Cold Room on Christmas Eve

Boxes are wrapped with precision,

paper perfect, patterns lined up.

All of us together in the cold room,

freezing behind the bar,

folding, wrapping, drinking

Grandma’s eggnog that makes us

giggle with just a sip of the heady,

nutmeg and whiskey milk.

We make sure the ribbon is curled just so.

I am the youngest, but I have learned.

We use only what paper we need. 

Each piece of tape is divided several times.

This is the way I think everyone prepares,

wrapping each gift slowly,

carefully, into the wee hours,

eggnog and chatter warming us.

Somehow for all of us,

every year the same, each box

wrapped by loving hands,

admired and held up to the light,

kissed with ribbon,

laid down to wait under twinkling lights,

becomes something more.

Some piece of us, some sliver of dream

Lies swaddled deep in the folds of a sweatshirt

for him, or nestles warm and fragrant

in the pages of a cookbook for her,

expectant,

full of possibility.

Just as we are again,

tonight.

Shaking me up

Good morning.  I didn’t get my second chemo treatment last Friday, as my platelet count was too low.  Ok, this was disturbing. This was only supposed to be my second dose!  Hopefully, the lab thing was just a weird snafu and I’m merrily making platelets now so I can receive a full dose of drug tomorrow.  Let’s hope so. 

In the infusion center, my lovely chemo nurse, Lee, came in to draw my blood, and I told her why my blood was boiling just the tiniest bit this fine morning. I left the cancer center the week before feeling as if I had been flung a lifeline so I would never get caught unable to reach someone if I had pain.  Well I had a question for the palliative group, so I called the number on the card.  Guess what?  It was the main cancer center number, and I was put in a queue over and over again.  I hung on for what felt like hours and hung up.  I tried again; same thing.  The next day, with my question still banging around my brain, I called again.  I spoke to someone who said the NP would get back to me.  That evening she did, and said she would check with the physician and call me the next day.  Which she did not.  I now understand that this was a funny week and someone was out sick….but what I got was the abrupt severing of the most vital of lifelines.  Oh, the experience made me feel vulnerable and teary and angry and just generally awful. 

What does the little guy do, I ask you?  I know this system inside and out, and it is broken.  Good people try really hard to put band-aids over the cracks, but in general, the system does not work so well for the patient.  What would the world be like if all patients in need of palliative care were given someone’s beeper number to call instead? In all my years as a cancer patient, the only place I really have had repeated trouble is accessing the system.  Isn’t that silly?  This is the place most people get caught, especially those who don’t understand the crazy system.  Again, all those fabulous nurses and doctors and others generally want to help more than anything. Problem is, they don’t know you are calling and calling and calling, or banging your outchy little head against a wall just trying to ask if you might increase this or change that.  And I still get called  “McKinley” when being called back for an appointment, after I’ve raged against this machine over and over again. I know I have talked about this previously, but please, anything but this!  Call me Ms or Elizabeth or doctor McKinley.  I wish I had the cajones to walk up to the woman who has just screamed “MCKINLEY”, and tell her that I will not move from my spot in front of her face until she announces me across the waiting room as GODDESS OF GOODNESS AND LIGHT!”  (I might have said this in a previous blog, but bear with me).  Ah, it makes me giggle just thinking about it.  She has no idea what her words do.  She needs to know.

Anyway, I feel like I need to shake off all these muddled feelings of frustration and disappointment and, ok…rage.  I’m generally pretty upbeat and happy, but I’ve been sitting on my rear for days feeling quite disgusted –mostly with myself. I want to jump up and down and do the hokey pokey for a few minutes to dispel the bad karma.  Not so sure it will work, but I am thinking about working on it. I really just want to watch more episodes of The Wire, or escape to Middle Earth and become Aragorn.  But mostly I’m just eating.  I have a winter farmer’s market delivery every other week, and I am not sure I can find another way to cook kale or beets or brussel sprouts.  I have to eat like a maniac just so I don’t waste it all.  My husband will nibble on a brussel or two, but beet greens and kale?  Dream on, sister.  What was I thinking?  So here I am feeling angry and disgusted while stuffing kale into my mouth. As you can tell, I’m feeling out of sorts and a bit twitchy all over. Someone needs to shake me.

And then along comes this poem from the internet depths, and I am shaken.  Poetry is a miraculous thing.  See what you think of this and these:

TIRED OF SPEAKING SWEETLY (Hafiz)

Love wants to reach out and manhandle us,

Break all our teacup talk of God.

If you had the courage and

Could give the Beloved His choice, some nights,

He would just drag you around the room

By your hair,

Ripping from your grip all those toys in the world

That bring you no joy.

Love sometimes gets tired of speaking sweetly

And wants to rip to shreds

All your erroneous notions of truth

That make you fight within yourself, dear one,

And with others,

Causing the world to weep

On too many fine days.

God wants to manhandle us,

Lock us inside of a tiny room with Himself

And practice His dropkick.

The Beloved sometimes wants

To do us a great favor:

Hold us upside down

And shake all the nonsense out.

But when we hear

He is in such a “playful drunken mood”

Most everyone I know

Quickly packs their bags and hightails it

Out of town.

In the Middle (Barbara Crocker)

of a life that's as complicated as everyone else's,

struggling for balance, juggling time.

The mantle clock that was my grandfather's

has stopped at 9:20; we haven't had time

to get it repaired. The brass pendulum is still,

the chimes don't ring. One day you look out the window,

green summer, the next, and the leaves have already fallen,

and a grey sky lowers the horizon. Our children almost grown,

our parents gone, it happened so fast. Each day, we must learn

again how to love, between morning's quick coffee

and evening's slow return. Steam from a pot of soup rises,

mixing with the yeasty smell of baking bread. Our bodies

twine, and the big black dog pushes his great head between;

his tail is a metronome, 3/4 time. We'll never get there,

Time is always ahead of us, running down the beach, urging

us on faster, faster, but sometimes we take off our watches,

sometimes we lie in the hammock, caught between the mesh

of rope and the net of stars, suspended, tangled up

in love, running out of time.

Of Poetry and Art and Chemo

Ok, I'm sitting here in the chemo chair again, and I'm trying to feel gratitude.  But I don't.  I feel like throwing something through the beautiful new windows here in the beautiful new cancer center's infusion center.  My seat heats up, which is fabulous for this cold girl, but it doesn't really make up for being here.  The view is nice too -- I see the gorgeous church across Euclid and the top of the crazy Gery building sparkling in the sunshine.....maybe that helps a little.  My old chemo nurse Lee walks up to take care of me, and I burst into tears.  Ugh, this is even more loaded for me than I thought.  I am an idiot; of course it is!  I have just been trying to ignore that the whole thing is happening. In some ways, I have even convinced myself that I am looking forward to this day, as I haven't been feeling great and I know I need the chemo, but I have been in these seats--old cancer center and new-- too many times.  Even though the sun is shining in these big windows, I am in a dark place, and this recognition has awakened in me a bit of violence.  Thank goodness I didn't meet a breast cancer chemo "newbie' wearing pink; I might have thrown her out a window.  Isn't that mean?  Ugh.  The peanut butter crackers are helping a little, though.

And I got lots of help, and I needed it.  The infusion, as usual, takes much longer than the reported half hour.  My labs need to be checked, the doc needs to weigh in on doses if labs aren't perfect, which mine are not, and there just is more to do than just hang a drug; therefore, i have lots of time for lots of people to swing by.  I am usually quite happy sitting by myself, typing, reading, watching something on my computer.  Today, Lee picked up on lots of need and contacted the appropriate people.  I know my oncologist and I had talked about pulling in the palliative care people to work on all the weird neurologic symptoms and pain I had been having from the tumor that was radiated in my neck, but I hadn't met them yet.  So in walked the palliative care NP, who was thoughtful and lovely--therefore i wept crazily for her too....oh well.  I told her how much trouble I had had with weird pain that scared me and adjusting all the meds when I was feeling loopy, and she listened (that is such a wonderful thing), and she helped.  I left with some medication changes, but more than that, I left with a life line if pain is a problem. Lovely.

And then, in walked my friend Sally who is a minister and works in the cancer center as the pastoral care director.  She also is so nice, she makes you cry.  Or she makes me cry.  But she is also upbeat and supportive and encouraging. You know, I left forgetting that I had even had the drug dripped into me.  I left feeling that I had been heard and loved, and I was able to walk out of that dark place.  I have to say, I get great care.  I clearly have needed a place to grieve about all of this, and I don't feel like I can allow myself to do this very easily at home.  So I watered the floors of the cancer center....and felt much better.  Just as all the nurses and docs told me, I haven't experienced any terrible problems from this chemo so far, and I actually feel better today, the day after chemo, than I have in a long time.  Clearly our heads need to be cared for as much as our bodies, or perhaps better said, health and healing really depend on taking care of the whole person.  Such a duh!  But I'm always amazed at the power of our heads to help us or hinder us from healing.

I want to go back a little and talk about a little party  that took place a few nights ago.  A group of friends got together to support me before chemo started, but there was a twist.  We all had to make an artist trading card, a small blank card that could be adorned with writing or paint or collaged paper, and bring a poem.

Now I have a small group of friends who would identify themselves as "art-friendly" without too much prodding, and others who would not.  But friends came and valiantly stretched their artistic bones amidst much laughter and wine.  We had a wonderful time.  When we sat down to read the poems, I was a bit overcome.  So many of them I have heard before and love,, and others were new and delicious....some funny, some not.  But all seemed to cut through all the crap and say a clear, "I love you" in their marvelous way.  Went home and wept about that, but did a good job of keeping it all together while there!  I am getting some help putting poems and trading cards on our original canvas:

Here are all the trading cards people created:

And finally, how about a selection of those wonderful poems?

Introductions (Moya Cannon)

Some of what we love

we stumble upon—

a purse of gold thrown on the road,

a poem, a friend, a great song.

And more

Discloses itself to us—

A well among green hazels,

A nut thicket—

When we are worn out searching

for something quite different.

And more

comes to us, carried

as carefully

as a bright cup of water,

as new bread.

Sonnett XXIV  (Pablo Neruda)

You are the daughter of the sea, Oregano’s first cousin.

Swimmer, your body is as pure as the water;

cook, your blood is quick a the soil.

Everything you do is full of flowers, rich with the earth.

Your eyes go outward toward the water, and the waves rise;

your hands go out to the earth and the seeds swell;

you know the deep essence of water an the earth,

conjoined in you like a formula for clay.

Naiad; cut your body into turquoise pieces,

They will bloom resurrected in the kitchen.

This is how you become everything that lives.

And so at last you sleep, in the circle of my arms

That push back the shadows so that you can rest—

vegetables, seaweed, herbs: the foam of your dreams.

From ee cumings:

I thank you God for this most amazing day, for the

leaping greenly spirits of trees, and for the blue true

dream of sky and for everything which is natural,

which is infinite, which is yes. 

cheers!

Lissa