"Laughter Through Tears"

Two years ago

          Jim and I stay in Utah for Thanksgiving, since R'el and David are on a road trip: to Wisconsin to visit Annie in Madison, then to Chicago to help Matt move apartments and enjoy Thanksgiving with Meemaw Charlotte. The guy with leukemia keeps up a good pace as they walk all around Lincoln Park ZooLights.


Post-Thanksgiving 2016

Before sacrament meeting, my friend Elaine asks me how I am. I shake my head as tears well up. Jim is at another chapel (he was called as a counselor in the Cambridge Stake Presidency November 6), so Elaine offers to sit with me. I can’t speak without sobbing, so I scribble a note, “This is an unexpectedly harder holiday season than last year. I just am having a painful time. Not constantly, but intensely.”
Elaine says something that makes me laugh. I ask, “Please make me laugh.” She quotes Steel Magnolias, “Laughter through tears is my favorite emotion.” During the opening hymn, my throat constricts, tears well up, and I can't sing. Elaine puts her arm around my shoulders. I'm grateful.

I have a strange dream. I’m walking in a huge grassy cemetery, with markers flush to the ground. An Army sergeant is showing me a large area under development at the far end of the cemetery. It’s a massive excavation. The soil is slate-colored and textured like flaky clay; the sides are perfectly squared off. The excavation pit is about 20 feet deep and covers many acres. The sergeant explains that they dig the entire area out, then replace the soil in large blocks, about 4 feet by 6 feet. That way the graves are squared and uniform when they are dug.
Where does that dream come from? (I’m open to suggestions.) As I think of it in passing over the next several days, It seems related to the perfectly squared hole the cemetery workers dug for David’s gravestone. I took a picture of it, before the stone was installed, which occasionally appears on my computer screen. (My screen-saver is a random slideshow of all my photos.)

          Other photos that flash by: David in a helmet and blue jumpsuit, strapped to a smiling helmeted stranger with dark googles. David's cheeks look like rubber. It's the sky-diving jump he made, on June 12, 2010, back when he was living with us, before we know what acute myeloid leukemia was. David looks so alive, so happy. Another picture shows him about to enter the small plane, turning back to the camera with a smile and a thumbs up. It makes me smile.

Welcome Respite Then, Loss Now

Two years ago

Before Thanksgiving 2014

David’s medical condition is stable, if not sustainable. He's healthier than he's been for months, so Jim and I fly to Utah for the annual Johnston Pre-Thanksgiving Dinner. Sunday night we drive to Shelley, Idaho, and stay in Charlotte’s house on the Snake River. It’s a welcome respite: a quiet day, with no obligations. We have the spacious house to ourselves. Outside the sliding doors, we watch the shining whitewater flow under a wintry sky with pale white clouds. There’s snow in the grass.

After we return home, we attend an intimate concert of Brahms’ Ein Deutsches Requiem  (A German Requiem) scored for piano-four-hands and chorus. I love this piece: Brahms chose comforting scripture verses, in contrast to the traditional Latin text, with its "Day of Wrath", that Mozart and Verdi used. My favorite is a duet between the soprano and choir. The soprano sings:

                         Ihr habt nun Traurigkeit;
                         Aber ich will euch wiedersehen,
                        und euer Herz soll sich freuen,
                        Und eure Freude soll niemand von euch nehmen.

And ye now therefore have sorrow:
But I will see you again,
And your heart shall rejoice,
And your joy no man taketh from you.

And the choir continues with the words of Isaiah:

Ich will euch trӧsten,
Wie einen seine Mutter trӧstet.

                        As one whom his mother comforteth,
So will I comfort you.

Before Thanksgiving 2016

Next week is the program for our annual wreath-making party in our Relief Society (church women’s organization). A small chorus rehearses Sunday evening. In the middle of a Christmas song, suddenly and inexplicably, I feel a constriction in my throat and tears in my eyes. I mouth the words and resist the craving to double over and sob in grief. It passes, but reminds me that grief lurks, hidden, close to the surface.

Jim has been feeling more intense loss this week as well. Perhaps it’s the shorter days. Sunset is at 4:15 p.m. this week. It’s a season of loss, despite the Thanksgiving and Christmas holidays.

Veterans Day 2016

Two years ago

Except for a few family trips, David has not gone anywhere but his twice weekly appointment at Mass General. It’s been five months since the transplant, five months of avoiding public places. David still has a minimal immune system, that's not going to change, but I ask Dr. Fathi if he can at least go to church. David starts attending, wearing a face mask. One Sunday a visitor comes up to us. I expect him to say something sympathetic, but he looks at David suspiciously and obviously wonders if he has Ebola.

Veterans Day 2016

Jim and I walk to Lexington Center, arriving moments before the Veterans Day parade steps off. (We usually jog the last few blocks, since we never leave home early.) We shake hands with Bill Mix, a longtime Minuteman who started the William Diamond Jr. Fife and Drum Corps. (Annie and Sam joined at its inception in 2002.) On this glorious bright autumn day we walk alongside the high school band as they march down Mass Ave.
Mr. Jeffrey Leonard, long-time band director Coordinator of Performing Arts for the Lexington Public Schools, steps aside for a moment to tell us that the chorus risers are in. They were purchased in part with a donation from David’s insurance money.
The parade winds around the Lexington Battlegreen, then heads back down Mass. Ave to Cary Hall. The program starts at the eleventh hour of the eleventh day of the eleventh month: the 98th anniversary of the Armistice that ended World War I. The police color guard posts the colors; the veterans of each branch of the military stand as the high school band plays their respective service song. Two Vietnam vets speak as part of the 50th anniversary commemoration. They remind us that they did not come home to a hero’s welcome, but faced public anger and bitterness.

As another speaker, Gina Johnson, is introduced, I realize that she made a pencil drawing of David from a photo. We received the original drawing. For her volunteer mission, Operation Home Ties she draws a “memory portrait” of each fallen serviceman and woman with ties to Massachusetts; she posts a copy on her travelling tribute wall.

We hadn’t noticed it, but in the foyer is a large display, about 8 feet tall and 30 feet long, of penciled portraits. After the program, we view the wall and find a small copy of the same line drawing that  hangs on my office wall. We walk over to Gina and show her David’s picture. Through my tears I’m able to thank her for her thoughtful service to us.

Transformative Music

Two years ago

On October 23, 2014, David starts a ‘phase one clinical trial’ of cabozantinib. He takes a pill each morning and we go to MGH twice a week for bloodwork. For the first two weeks, David is allowed to take hydroxyurea, a standard workhorse of a drug (first synthesized in 1869). It doesn’t act on the bone marrow, where the leukemic cells are produced; it just keeps the white blood cell count low.
We drove to New York a few weeks ago, visiting Peter, Xiomara, and little one-year-old Andrew, R’el, and my dad. R’els Oratorio Society of New York performed Haydn’s The Creation. His depiction of the creation of light radiates splendor.

From my blog:

David was happy and talkative. Saturday morning, he carried Andrew from the apartment to the car a few blocks away. Sunday, he walked to church (8 blocks) and back (E. 95th St. to E. 87th St.). He just sounded like the old David, sparring with Peter, saying interesting, intelligent things. I savor it.


First week of November 2016

Sunday morning, November 6, radically changes Jim’s and my life. Jim is called to be a counselor in the Cambridge MA Stake. The Cambridge Stake consists of thirteen congregations. We don’t know all that his new role will entail, but it will include counseling with individual stake members and leaders as well as administrative duties. We do know it will be a spiritual stretch for us, and a great blessing in our lives.

Last night, Jim, four of our friends, and I shared an evening with 2600 others at a concert by the Boston Philharmonic Youth Orchestra at Boston Symphony Hall. According to Wikipedia, Symphony Hall is one of the top three concert halls in the world. The shoebox design creates an unparalleled acoustical experience.

The young players, all under 22 years old, play with fire, intense energy, and passion. Benjamin Zander is a force of nature; he inspires his musicians to musical heights I’ve never heard before. (Watch his 21-minute-long TED talk, "The Transformative Power of Classical Music".

The crowning jewel of the concert is the Sibelius Violin Concerto, played by Mo Yang, a young Korean violinist. For nearly 40 minutes, his every move holds us captive.

I love listening to classical music recordings, but I’m not sure I can ever listen to this concerto on a recording again. I don’t want the whole body experience of last night to be overlaid with anything else.

New Calculus

Two years ago

Early November 2014

On October 15th, Dr. Fathi states that once the conventional treatments stop working, David will probably die within two months. I live with a new calculus to my life: every week that the treatments keep the leukemia at bay pushes back that two month deadline.

Approaching my 60th birthday

I’ve successfully navigated writing about the toughest week of David’s illness, mid-October and the pronouncement, 'infinitesimal'. (When he died was tougher, but then his illness was over.) Now begins the remembrance of living week by week, blood test by blood test.

I haven’t had any gut-wrenching pulls into intense grief since that sunny day on an Arlington sidewalk two weeks ago. I do often wake up with a diffuse anxiety. I don’t even try to tease it out: does it matter whether the grief of David’s illness and death is 30% of my pain or 80%? I don't think so.

I had a wonderful evening last Tuesday. Twice a month I host a women’s writing group. Sometimes I’m the only one attending. The first few times that happened, I took it very personally: Nobody Likes Me, Everybody Hates Me. My Bryn Mawr friend, Stacie, taught me that song when I was feeling sorry for myself, forty years ago. (Yes, I just counted them on my fingers: exactly forty.). Now I’m at peace about it. When no one else comes, I sit down and write by myself. If one other person comes, we have a cozy tête-á-tête. Three of us changes the dynamic: not better or worse, just different. I show up every time; often another friend or two joins me.

          On Tuesday, Jennifer came for the first time, with her adorable six-month-old. She worked on the story of her daughter's birth; I worked on my blog. We wrote separately for a while, then read aloud to each other. Her insight improved my post. We promised to keep writing and meet again next month.

The Romance of Route 62

Two years ago

There’s no news this week. Dr. Fathi is researching clinical trials that David might qualify to join. We continue to drive along the Charles River on Storrow Drive to Mass General every Monday and Thursday. I know every manhole cover along the scenic parkway.
His white blood cell count says it all. On October 6, David’s WBC count is a very low 2.2: only 2.6% are leukemic blasts. By October 26, the WBC count is 15.5: 65% are blasts. Likelihood of a cure: infinitesimal.

Late October 2016

          The stressful month-long anticipation approaching the second anniversary of Dr. Fathi's pronouncement, "infinitesimal", melts away and Jim and I enjoy two autumnal outings this week.

Hartford Temple

Wednesday, we go to the open house of the Hartford Connecticut Temple (The Church of Jesus Christ of Latter-day Saints). The drive west on the Mass Pike and Interstate 84 is glorious; trees of flame-orange, yellow, and red, dazzling in the bright sunlight; a new vista over every hill. After our tour we stop for lunch at the Elbow Room--an American Joint restaurant in West Hartford. The day is fine and the rooftop dining is open. Fondly we remember the many visits to R'els during the four years of her psychiatry residency here.

Route 1 last month, what next?

On Friday we take a central Massachusetts foliage trip. Rain threatens, but we press on. I’ve planned our trip: Massachusetts Route 62 all the way to its western terminus at Barre, east of the Quabbin Reservoir, in central Massachusetts. I’ve great affection for Route 62. It intersects our street just 3 miles north of our house. In the road atlas it wends its way through small towns and countryside. The actual experience is enchanting. Each town has a white-steepled church along one side of a neatly-kept common.

October in Central Massachusetts

At Barre we walk into the folksy Colonel Isaac Barre Gift Shop. Wooden signs with whimsical sayings,

My favorite saying in the Barre gift shop

home decorating items, candles, knick-knacks, and old books. A wall-size historical map of Barre illustrates the mansions of prosperous, nineteenth-century Barre. We chat with the shopkeeper, who loves the small-town living. In the back of the store garments wrapped in plastic hang on a long rack. She explains: the shop used to be a dry cleaners. Now she accept clothes during the day and a van takes them to the next town every evening. Sometimes a customer comes in after the pick up, but before the driver has left town. The shopkeeper takes the clothes and puts them in the back of the van. There are apartments above the shop and sometimes someone will call her: the cell phone coverage is spotty and he needs to get a message to his wife at home. She runs upstairs with the message. Mayberry R.F.D. right here in New England.

Our last stop is Petersham. Another white church, another town green with granite war memorials.  We wander into the Memorial Library, another throwback to an earlier era. Behind the circulation desk is a huge marble slab honoring its citizen-soldiers of the Civil War. Across the green is a small monument, marking where Shays' Rebellion (1786-1787) ended.

Shays' Rebellion plaque in Petersham

I've only seen these signs in New England

          We wander north and drive back on Route 2, stopping at a roadside farm stand in Concord for a pumpkin and some local apples.

Total distance: 143.3 miles. Total driving time: 4 hours, 4 minutes.

That evening I see 'James Madison', in frock coat and wig, discuss the contentious political climate around 1800, not unlike today. Much as I love the Broadway musical Hamilton, I realize Lin-Manuel doesn’t do him justice. Madison, an articulate, genteel, and refined Virginian gently chides us for the rough, even rude character of the citizens of Massachusetts. But he graciously spends the evening enlightening our minds.

Ambushed by Grief

Two years ago

            Jim, David, and I sit in a small windowless room.Dr. Fathi says there is no known treatment likely to cure the leukemia: David’s chances of survival are “infinitesimal”. He speaks of keeping patients alive for a certain event: a child’s graduation or a wedding, for example.

A few days later David sends an email to our families:

            “You should probably sit down again. My doctor concludes that my chances of recovering from leukemia are extremely low. I probably have on the order of a few months left to live. I am unsure what to think of this. I definitely haven't been overwhelmed by negative thoughts at this news, which is good.
I love you all
David”

Mid-October 2016

Disclaimer: I want to emphasize that what I write here is not the majority of my experience. 95% of the time I function well. I laugh; I learn; I enjoy beauty. I go for walks; I brush my teeth. The grief attacks are short-lived, but brutal.

I walk down the sidewalk, away from my writing coach's apartment, enjoying the perfectly blue October sky, sunshine on my hair and face. In the sky to the north, I hear the faint beat of helicopter blades. In a quarter of a microsecond, several memories flood in. Last week, as I researched for my blog post, I had watched a YouTube video of a short section of Mr. Holland’s Opus. As Mr. Holland describes Beethoven’s experience as a deaf composer to his music appreciation class, the second movement of Beethoven's 7th Symphony  plays on the phonograph. Mr. Holland is silently processing the recent news that his own young son is deaf and will never be able to hear music.
          In the last few seconds of this YouTube selection, the sound of beating helicopter blades is heard. I know the movie well: the beats segue into scenes of the raging Vietnam war and then the military funeral of a former student. I hadn’t thought about this scene for years. Since then, I’ve been in a cemetery with a flag-draped coffin. Two cemeteries. Three coffins: my Navy veteran mom in 2013, my Navy veteran dad in 2014, and of course David in 2015. I’ve heard taps, played in a rain-soaked cemetery in December, wafting through a September fog; I’ve watched earnest young men in uniform fold the coffin-sized flag. I’ve been handed a flag for safekeeping by an earnest Army sergeant, so moved he couldn’t express himself.

So, here I am in Arlington, ambushed by grief. Again.