Zen Hospice journal, Christmas Week

The Texter: Jean at the Zen Hospice Christmas dinner,
performing a characteristic activity 

We have been enjoying the holidays, thank you everybody has taken time out of their busy lives to visit, send cards, etc.  But all that fun has taken its toll, at least on our hospice journal.  All we can do here is briefly recount some what of made the past week memorable.  If you know of something significant that we've left out, please tell us and we'll make amends.  For an in-depth look at the hospice experience, more incisive piece, please see Jean's "A Tale of Two Woodwinds," posted Saturday December 29.

Sunday, December 23

Oded Angel visited, a colleague of Matt's and a friend of the family for many years.  Oded came bearing gifts, a Glen Gould's Bach Cd, and a copy of Calvin Trillin's Dogfight, the 2012 Presidential Campaign in Verse.  We hope to Trillin's epic will be discussed in a future post; this blog does not take itself too seriously and will not eschew light verse!

Monday, December 24

In the afternoon we took our 2nd trip to the Samovar, where Jean edited a Will prepared by our attorney.  Would you be astonished to learn that Jean found a handful of typos that both the attorney and I had missed?  And by the way, if you have not prepared your own Will yet, consider doing so without being prompted by serious illness

Jean with canna lilies

The photo was taken the small park next to the hospice, on the way back from the Samavor.  We spent a half-hour there, appreciating the chill of winter on our faces, admiring the Canna lilies and a gingko tree with rich yellow foliage,

Christmas Eve

In the evening, Jean had her longest Skypes yet, a total of about two hours with her friends Amy Garber in Michigan and Yao Louis in South Dakota.  We gave Amy a video tour of Jean's hospice room, and if anybody else is interested, just ask and it shall be arranged. Yao was excited at the prospect of spending holiday time with her son Joe, back home from college on semester break.

Christmas Day

On Christmas Day the Hospice had a huge Mexican-themed banquet, including tamales, turkey with mole sauce, and sweet Mexican-style coffee with cinnamon and cardamom.  We held hands around the serving table before we dined.  Daniel, one of the senior hospice volunteers, said words of gratitude about being able to share this moment together.  Words especially meaningful in our circumstances.

Nick Galloro was able to join us at the banquet, before leaving for an evening on the town.  He told us about a movie he liked, Silver Linings Playbook, which takes a humorous look at the world of the bi-polar.

Tara McCulloch and her daughter Pearl came by to visit before the banquet. As she often does, Pearl left us a gift of some her art work.  And like Oded, Tara brought a gift of poetry, Mary Oliver's House of Light.  Some classify Oliver as a nature poet, but her book casts light on the human world too.  Here are a few lines from Indonesia, taking in a tea planation:

...And the pickers balanced on the hot hillsides

like gray and blue blossoms,

wrapped in their heavy layers of clothes

against the whips of the branches

in that world of leaves no poor man,

with a brown face and an empty sack,

has ever picked his way out of...

Wednesday, December 26

Karen Creech, and Andy Brodie and Patricia Seery came by for a repeat visit in the afternoon.  Andy teaches school in West Contra Costa, and his wife Patricia is also a teacher.  After Andy and Patricia left, Jean talked to Karen about playing music, see Jean's "A Tale of Two Woodwinds" for more.

Friday, December 28

Karen Creech came by to visit again, and she, Vivien, and Jean had a great time talking late into the night.  It was one of the longest holiday social events for Jean, and one where she participated fully.

Viven Arnold with a preliminary 
version of her caterpillar fungus print

Vivien Arnold is a friend and colleague of Jean's at URS, and this was her 2nd hospice visit. She brought many gifts.  Vivien is taking a print making class at San Francisco City College, and created a graphic showing what goes by the scientific name of Ophiocordyceps sinensis, yartsa gunby in Tibetan, and Dōng chóng xià cǎo in Chinese ("winter worm, summer grass").  This is the caterpillar fungus that Jean is taking as part of her Tibetan Medicine treatment, and which could be responsible for how well she has been doing at the hospice.

The finished version

Vivien also brought snacks, a wonderful Christmas card made from a montage of photos of her brightly colored oil paintings, and a copy of the latest issue of the New Yorker.  That mag had a review by Bill Wyman of Randy Sullivan's The Strange Life and Tragic Death of Michael Jackson.  Both Jean and Vivien are fans, and Vivien's sister Gina has presented MJ papers at academic conferences.  Wyman presents the King of Pop as the last and greatest crossover act, going where Little Richard could not, and N.W.A. and Snopp Dogg would not. He also presents a glum picture of the last days, MJ's face hollowed out by plastic surgery, claimed for death by the prescription drugs he used to find his way to sleep, evading memories of his "silly, toxic, grasping family."

A Tale of Two Woodwinds

A flute and a piccolo

by Jean Lewis

Your brain controls many functions that contribute to your personality: cognition, emotions, sensation, muscle coordination.  Brain tumors can impair all of them.  You want to resist, to keep your identity, but it’s a struggle to mount a defense or stage a recovery.

I've already experienced a few chapters in this story. In September, I started to have problems with short-term memory, particularly dates.  In the first half of November, I lost the ability to stand up without assistance.  Then on Sunday, December 23, I discovered I could no longer play the flute; after fracturing my left wrist, my hand is just too weak to both hold the flute and do the fingering.  This loss really hurt.  I have been a flautist since I was 10 years old, playing music had always been a source of pride and pleasure, and my flute has a particularly nice tone. When Karen Creech came by to watch Battlestar Galactica with me, I told her that because I couldn’t move my fingers, everything I played would be pretty boring (a single note).  We laughed immoderately at the understatement, though it is sadly true.

I texted Matt the bad news Sunday while he was out doing holiday shopping, asking to talk to my social worker immediately; that person did call and tried to console me.  Later that evening, Matt and I had a long talk about the flute, searching for a positive spin.  Perhaps just the fact that I made the attempt was good news?  After all, it was the first time I had tried to play since the summer.  And my fingers are actually more nimble than they were in November, as anybody who has received my texts can attest. Maybe I could improve with practice?

Or maybe not. The problem is that the left wrist is critical for playing the flute: it not only holds the instrument’s entire weight, it's at an odd angle, and the thumb and first two fingers must hold the keys shut tight, or all of the notes will be out of tune. Right now, my fractured left hand is far too weak to do either of those functions.

I told the hospice staff what had happened, and on Wednesday, the day after Christmas, a volunteer massaged my left hand. It felt good, conceivably it could actually help.  That same day, the social worker came to see me in person, and I asked about physical therapy (PT).  She said she would need to submit a special request. Even though I cannot stand by myself, PT was not part of my treatment plan; most people do not go into hospice care expecting to get better. The request will still take a couple of weeks to process, assuming eventually approved.

I had one other idea.  I wanted to visit an SF music store, Sunset Music Co. or Lark in the Morning, and get myself a piccolo.  A piccolo is a flute that plays an octave higher, but much lighter, with easier fingering.  The truth is that an ebony piccolo had long been on my wish list, but they are so expensive I did not mention it.  This could be my big chance! All that was required was to make arrangements to drive me and my wheelchair to the store, and then power on past the sticker shock.  We made indefinite plans to go, sometime after Christmas.

PanPipes from Karen!

And then, as has happened so often in the past weeks, Karen Creech came to the rescue.  On December 26, after my massage and the visit with the social worker, Karen came by with a present: Pan Pipes! I tried a few notes, she said she was going to buy a set for herself too, and we joked about forming a band.  This in itself was a boost, but a bigger improvement happened when I told Karen I coveted an ebony piccolo.

A San Franciscan, and a musician as well as an attorney, Karen knew the ropes; neither the transport logistics nor the price were the obstacles we’d feared.  Union Music, down the hill from the hospice on Market, had an ebony piccolo for rent, and they agreed to hold it for us.  All we needed to do was ask the hospice staff get me up and into my wheelchair, and then take a ten minute walk down to the store.

At Union Music, trying the piccolo

Of course they let me try playing it before renting.  The fingering was easier then on my flute, and I could play more than one note, if not an entire tune.  So it’s not a slam dunk, but it’s possible I may play again.  We signed up for a three-month rental, with an option to have the rent applied to the purchase price should we decide to buy.  A year’s rent will be a third of that price.

“Year,”  “three months,” I use those word on purpose; don’t think I don’t understand how they sound from somebody in a hospice.  Or “possible,” that’s been an important one for me lately, usually unspoken, with an “im” prefix in front.  Or if spoken, no prefix, there’s usually an implied negation, as if part of a weightless promise made to recalcitrant girl to get her to go along with the program.

My genes do give me cause for hope; my mom Sylvia was playing gigs well into her 80s.  And all the support and encouragement from family and friends, surely that must count for something, even if it’s not quite a cure for cancer.  Tibetan medicine may not be that cure either, but it does seem to be helping.  So don’t be surprised if you find yourself appreciating the music when you hear me playing on my birthday in March.  But don’t be surprised about the other “possibilities” either, brain tumors are no push-overs.

The walk back to the hospice took significantly longer than the one in the other direction.  Matt has his own serious medical condition, called being sixty-two, and I could hear his labored breathing behind me as he pushed my wheelchair back up the hill; he’s got some exercise lately walking between BART and the hospice, but not enough.  Also, it’s what you might call an “iffy” neighborhood, there’s often debris on the sidewalks to avoid, although not the homeless sleepers you find lower down on Market.  While Matt pushed, Karen went on ahead, clearing debris from the path so we could stay on the sidewalk.  It was a lot of work, but we kept going.  When we got back, we had something new for me to try.

Bay Area Brain Tumor walk 5/4/13 -- support team Jean and Jonathan

Click on the link below to support team Jean & Jonathan in the Bay Area Brain Tumor walk, scheduled for May 4, 2013 in Speedway Meadows in San Francisco.  Readers of this blog already know about Jean; the Jonathan in the team name is for Jonathan Ruben, who passed this year, after living seven years with a GBM. In May, his sister Suzanne Restuch walked with us in the 2012 event, and we were all three energized by meeting thousands of people whose lives had been touched by this terrible disease.  If you could use some of that energy in your own life, come join us for the 2013 event.  Or if you do not have time to walk, but do have money to donate, that works too -- it's an excellent cause.

Brain Tumor walk, May 4 2013, team Jean & Jonathan

Zen hospice journal 12-21 and 12-22 -- for the literary minded

Creative bouquet from Mary Ann and Joan.  Jean knew that
the  white flowers are called flock, the red buds euforbia, and
the thick, feather-shaped white leaves Dusty Miller.

 On Friday Jean was still not feeling like company; Dan Hakim, an old friend and colleague of Jean's from URS corp., had to content himself with a mere phone call.  But Jean was feeling gregarious again Saturday, and not only with visitors who wanted to watch videos   with her.

Why?  People do not go into hospice care because they expect to get better, and serial disappointment has trained us in the arts of pessimism.  But perhaps the Tibetan medicine helps, it is conceivable that Jean's improving.  There's actually some evidence for that in the previous paragraph.  Trying to write this blog, a word kept eluding me, and I decided to try Jean: "Darling, senior moment.  Lost a word, sounds like 'garrulous' but means closer to 'sociable.'".  It took Jean only a second to come up with 'gregarious," me a minute to take in what had happened. Like old times, working together, Jean's editor's mind quick and obliging. We looked at each other and laughed, another emotion nearby.

Karen Creech visited again on Saturday, and of course she and Jean enjoyed an episode or two of Battlestar Gallactica (BSG to initiates).  But before that, we listened to one of Karen's favorite NPR podcasts, readings of short stories called simply Selected Shorts.  Isaiah Sheffer hosted the show, reading many stories himself, until his death from stroke complications last November 10.  He will be sorely missed.  The show we listened to Saturday was a Sheffer tribute first broadcast November 26, featuring him reading T. C. Boyle's Heart of a Champion (Lassie reconsidered) and Ian Frazier Dating Your Mom (described as humor, but like Lassie, with bite).

Mary Ann Koory (workshop leader); Joan Gibson
(talented workshop participant); Jean (another talent);
and bouquet 

The other visitors were Mary Ann Koory and Joan Gibson, from the novel writing workshop Jean was taking at the time her tumor was discovered in April 2011.  They brought the bouquet shown in the photos, an excerpt from Joan's novel, writers' talk, and poetry print-outs.  A shamelessly literary occasion, but of general interest; writer’s talk made it easier to ask big Jean questions about what made her Jean.

One question was inspired by a description of herself she wrote for the hospice when she moved in: "Want to save everything, especially cat, roses, and music."  This need to preserve, to save from extinction -- did it come from the friends she's lost to suicide?  In April 2011 Jean was trying to write about her friends John and Sandra, who took their own live seven years before.  Sandra had told Jean about her plans, that she not try to intervene, that nothing Jean could do would stop her.  Should Jean have ignored Sandra’s instructions and tried to step-in?  A question that's haunted her, which she wanted to explore in a novel.

  

But Jean had a much simpler answer or the origins of her need to save, avoiding all that heavy drama.  One day in young girlhood, her mom Sylvia became so exasperated with the mess in her room that she cleaned it by tossing out everything that wasn't put away. A Pyrrhic victory for mom; as now, Jean was willful.  A packrat was born, starting by hoarding toys, progressing to other saves.

  

Mary Ann's experience teaching Shakespeare led to the second big Jean question.  The students recite sonnets as part of the class, but they seem uncomfortable, even when they have them memorized.  Because of a lack of assertiveness, perhaps stemming from the same source that could cause a very talented editor to not get all the recognition she deserved in the work place?  But again, Jean eschewed self-dramatization.  It was not that she needs assertiveness training, Jean thought her problem was lack of focus.  Before the tumor was discovered, she was going to a therapist for diagnosed her problem as Attention Deficit Disorder (ADD).

  

The poetry was really fun, and brought in another set of big questions.

All Shall be Restored by Kay Ryan, quoted in full below, has an interesting slant on that vast topic, loss.

On first impression, Charles Bukowski's A 350 dollar horse and a hundred dollar whore offered a needed correction to the Zen hospice experience; how many tinkling temple bells can a person take? But to be fair, the hospice is not heavy on sanctimony. Indeed, if you read Rumi's Guest House (which appears to be the inspiration for the name of the hospice facility), one could almost imagine Rumi as a 13th century Bukowski, minus the flair for the racetrack idiom: The dark thought, the shame, the malice,/meet them at the door laughing,/ and invite them in.

Finally, one poem, Columbus in Retirement, was unattributed.  It seems that in his golden years, the great explorer reconsidered his discovery of the shape of the world.  The last line is Sailors all, we sail only and ever forward to the edge.  Readers of early 20th century American novels may catch an echo of Fitzgerald's famous line from The Great Gatsby: So we beat on, boats against the current, borne back ceaselessly into the past.

And now, without further ado, here's Kay:

All Shall Be Restored

The grains shall be collected

from the thousand shores

to which they found their way,

and the boulder restored,

and the boulder itself replaced

in the cliff, and likewise

the cliff shall rise

or subside until the plate of earth

is without fissure. Restoration

knows no half measure. It will

not stop when the treasured and lost

bronze horse remounts the steps.

Even this horse will founder backward

to coin, cannon, and domestic pots,

which themselves shall bubble and

drain back to green veins in stone.

And every word written shall lift off

letter by letter, the backward text

read ever briefer, ever more antic

in its effort to insist that nothing

shall be lost.

.

Zen hospice 12/19 - 12/20

 Jean drinking tea, appreciating  plants

Hearing that Jean was in a hospice, one of her friends said that it was impossible to imagine Jean without her garden. But it could be worse; Jean has been assembling a collection of bouquets and indoor plants, a small taste of our lives on Wood St.  Two indoor evergreens are in the back right corner of the bed table in the photo, in the foreground the yellow freesias Nick Galloro brought at lunch time on Wednesday 12/19.

Back massage from Daniel

 

Before Nick came, Jean has a massage from Daniel, one of the hospice volunteers.  In the afternoon, Jean had a visit from Tara McCulloch.  By the way, Tara and her husband Derek are working on a project to provide holiday cheer to the homeless.  If you are interested, find out more through Derek's Facebook page.

In the evening, Jean Skyped with Jill Irwin, a URS colleague based in Oregon, but she was too tired to talk much.  She was also too tired to socialize when Ann Cornell came to visit Thursday morning 12/19, and Gabe Kurt-Pico said Jean was not very talkative when he saw her that afternoon.  Many have suggested it's possible Jean's tired from having too many visitors over the weekend.  It could also be something like depression; Jean says she's disappointed to be able to go to Florida for the holidays.

Zen Hospice Journal - Tuesday December 18, 2012

Pearl Door rose, thanks Brian

Jean's new manicure

It was a quiet day at the hospice, perhaps because in the evening the volunteers had their annual holiday party.  During the day Jean had her done in a deeper reddish hue.  In the evening, Brian Vahey came by with a rose from his garden.

A happy couple photographed by
Brian Vahey, March 21,1998

Brian Vahey bringing rose

Brian is a colleague of Jean, who met her in 1990 when he started as a word processor for an engineering firm called Dames and Moore.  They have worked together on many projects, at Dames and Moore, as free lancers (Jean was laid off at Dames and Moore in 1995, not rehired as a regular employee until 2001), and at URS (who acquired Dames and Moore, and Jean's services in the process).  Brian is also an accomplished photographer, and in 1998 he took the pictures at our wedding.

For those who have not seen the hospice, here are some pictures of Jean's room.  It's single occupancy, about 15' by 15', with a sink and a closet.  The light fixture, artwork, and the hospital bed itself are all pleasant touches. The night nurse said she hears the drops hitting the skylight when it rains.

2nd story skylight outside Jean's room

Sink with devotional picture

Ye Olde EZ chair

Our plan is to get more evergreen shrubs to create a minature Christmas forest around the sink.












The view from across the hospital bed, with ez chair and window in background (below).  Note the wooden railings.  To take them own, fold out and then slide under the bed, very Zen.

Hosital bed

Zen hospice journal - Monday, December 17

  At the Samovar Café.
From left: Sophie, Chris, Matt, & Jean

The Samovar is on the corner of Page and Laguna, two doors down from hospice; Chris and Sophie are affiliated with the hospice.

This was actually a momentous occasion, the first time Jean has been out of the hospice,  since her arrival on 12/7, and also the longest she has remained in a sitting position.  Jean had herbal tea, and shared a salmon Cesar salad with wasabi dressing with Chris and Matt.  Delicious!







 
Andy Brodie, Pam Cory, Gabe Kurtz-Pico, and Patricia also visited, alas no pictures.  Andy and Patricia presented Jean with a book she had been wanting, a Russian language translation of Jane Austen's Sense and Sensibility. No details on Pam's visit, but just having the free time to do it seems like a positive development.  Gabe and Jean watched the John Lennon/NYC documentary that Pamela brought over yesterday.

Zen Hospice Journal Sunday December 16

Phil Cushway with strawberry shortcakes

Jean had many visitors today, which raised her spirits, but also tired her out.  It also meant she did not have the chance to try a wheelchair excursion, or to walk a few steps with assistance.  In the future, if too many people show up at once, some may need to take turns.

Yesterday, when he brought over chocolate mousse, Phil said he would come back soon with strawberry shortcake.  He was as good as his word.  Phil also brought a binder contaianing page mock-ups for his "Poetry and "Protest" project; a few of the mock-ups were possibilities for displaying Rita Dove's "Lady Freedom Among Us."  Phil read the poem to us out loud, see below for the text.

Karen Creech

A frequent visitor, Karen came bearing gifts of soft, sibilant, comfortable clothes: shirts, a sweater, socks, and shoes.

Susan Martinez with camellias

Susan is a friend of Jean's from her Math Reviews era in the 1980s, who goes swimming with Pamela Michaud.  Recently Pamela and Susan were talking, and discovered that Jean was a mutual friend.  That's when Susan found out that Jean was in the Zen Hospice.
 
Susan told us a few things about the Mathematical Reviews days. In some ways it was the most social job she ever had, she was very fond of her fellow proof editors, and even some of the mathematicians were friendly.  But she also describes it as a very physical job, were she and many of the other proof editors would work in their own worlds, listening to their own music on headphones, hunting for math symbol typos.
 
Susan also told us a few things about herself.  She's a volunteer coordinator at Children's hospital in Oakland, and at the end of January, along with other health care professionals, she'll participate in a state department sanctioned tour of Cuba.  She promised to come back and tell us her impressions of the forbidden isle, and expects to be seeing us before then. On leaving, she asked us if there was anything else we needed, besides camellias (roses are always welcome, as are plants that thrive in indirect light).

Pam Cory with MJ icon

Pam is an old friend and colleague of Jean's at URS, making her first appearance at the Zen hospice. She had wanted to come before, but -- no surprise to those of us in the technology world -- work's been crazy.  She brought the Michael Jackson icon with her, knowing that Jean's a serious fan who has danced in several "Thrill the World" events.  Pam, Susan, and Jean did some editors' shoptalk, discussing the positions of editors at URS--not quite part of the engineering team, not quite support staff.  Like "governesses" in an English estate was how Pam described it, not upstairs, not downstairs, but in on a landing in between.

Matt Garber, bearing a gift of cerry-corn scones
preoared by hs wife Cindy Fressola

This was Matt's first appearance at the Zen hospice, but he and Jean have Skyped, and they've communicated through Facebook.  Matt G. is part of the URS engineering world, but he knows Jean because he's an old folk dancing and bicycling buddy of Matt P.  BTW, Matt G. is no stranger to the realm of serious disease. Diagnosed with multiple sclerosis in the late 1990s, he continues to work, be a family man, and an intrepid bicyclist; every September he raises money for the cause by riding in the Waves to Wine fundraiser.

Doug Flock and Pamela Michaud

In the evening Doug and Pamela brought several videos for Jean, including a documentary on John Lennon in New York.  By that time Jean was too tired to watch, but she intends to get to them soon.

The poem Phil Cushway read to us, intended to be included in his book "Poetry and Protest."  I head it as a vision of the spirit of freedom dressed in drabs by harsh circumstances, not chic, not happy, but never to be ignored.


Lady Freedom Among Us
 by Rita Dove

don't lower your eyes
or stare straight ahead to where
you think you ought to be going

don't mutter oh no
not another one
get a job  fly a kite
go bury a bone

with her oldfashioned sandals
with her leaden skirts
with her stained cheeks and whiskers and heaped up trinkets
she has risen among us in blunt reproach

she has fitted her hair under a hand-me-down cap
and spruced it up with feathers and stars
slung over her shoulder she bears
the rainbowed layers of charity and murmurs
all of you  even the least of you

don't cross to the other side of the square
don't think  another item to fit on a tourist's agenda

consider her drenched gaze   her shining brow
she who has brought mercy back into the streets
and will not retire politely to the potter's field

having assumed the thick skin of this town
its gritted exhaust its sunscorch and blear
she rests in her weathered plumage
bigboned  resolute

don't think you can forget her
don't even try
she's not going to budge

no choice but to grant her space
crown her with sky
for she is one of the many
and she is each of us

.