Snow and Hand Bells

Two years ago

While we were in San Francisco, enjoying the temperate weather and green environs, Matt and David drove to NYC to visit R’el. They had a harrowing trip home in a snowstorm and got very stuck at the bottom of our driveway. The day after our return to snowy New England, my left arm ached so much from snow shoveling that I couldn’t sleep.

My journal entry for 10 February 2015:

…just this morning, as I was lying in bed, trying to get the energy to arise and really start my day, feeling the empty depression I seem often to feel in the morning, I fell prey to fear: the fear of my day rather than the promise of it. The burden of my dreams of the night rather than the hope to accomplish something worthwhile with my waking hours.

Not every day was like that, but it was a feature of my life.

Mid-February 2017

We’ve had 2 snowstorms this week. Thursday, February 9th, we got about 9 inches. Then, Sunday into Monday, we got 10 inches more.

I have fond memories of one particular snowstorm, at least 20 years ago, when I strapped on my heavy brown hiking boots one night and tramped along quiet side streets as the snow fell. So, Thursday afternoon, I laced up my grey hiking boots and headed down Bedford St. and onto the Minuteman bike path to David’s grave. It’s a 2 ¼ mile hike.

One of the two flags I had installed at the headstone was at an angle, causing the flag to hit the ground, but I couldn’t budge it in the frozen earth; all I ended up doing was crack the wooden dowel.

I wasn’t the only one on the bike path; I passed a man walking a dog, a few other intrepid souls, and a bicyclist. The wind was sharp, but bearable; the cemetery quiet. A pick-up truck with a snowplow attached was just clearing the road near David’s grave as I entered the cemetery.

The next day my friend Susanne and I drove to the Minuteman National Park to walk on the unplowed Battle Road. We trudged through nearly a foot of snow for a mile and a half.

When we first started on the path, we met a pair of cross-country skiers. The first, a woman of about 30 years old, smiled brightly and passed us easily. The second woman struggled valiantly to keep up. As I watched her, I realized my fantasy of effortlessly skiing through the woods was just that, fantasy. I’ve only been on skis once in my life, back when R’el was about 2 years old. It was fun, but I was in my twenties. At 60, I’m sure it wouldn’t be so easy.

On Saturday I hosted our second hand bell jam. My new friend, Joe, owns a set of hand bells, passed down from his grandmother, Margaret Nichols Shurcliff, who brought hand bells to America. I offered my home as a place to play and recruited some friends. I also made copies of some simple piano tunes and color-coded them for each pair of bells. We had a great time. Although I’ve had a lifetime of amateur musical experience, playing hand bells requires a skill set I don’t yet have. Split-second timing is required: if I am late with a note, every other player is thrown off. And sounding the bells consistently is more challenging than I had imagined. We won’t be doing this any time soon. (And here's Eui Gon Kim playing a solo. I love how three-dimensional her playing is. Just watch!)

Slippers or Crocs

Two Years Ago

David is well enough that Jim and I take a trip to San Francisco to visit his niece, Carla, and husband, Daniel. We get out of Boston just ahead of a snow storm and return before the next one. February broke a record as the snowiest month on record: 64.8 inches.

2017

A week ago, in sacrament meeting, a young married man gave a talk. He described himself as “almost 28”. I struggled, dully and unsuccessfully, with the arithmetic. Afterwards, at home, I finally worked it out: David was 27, “almost 28”. My inability to do this simple math was disconcerting, but not surprising. This young man will probably make it to 28. David never did.

Last night I went to a Compassionate Friends meeting in Concord. Once a month, a husband-wife facilitator team meets with whoever comes through the door, seeking solace as a bereaved parent. It’s a club no one wants to join.

I first attended in August, just before the first anniversary of David’s death. It was profoundly comforting. Last night was my fifth meeting. In January's meeting, I described my rough start to the New Year; this month I’ve been calmer. And, not feeling desperate to talk, what did I get from attending? A time and place set aside for talking about David and listening to other parents talk of their lost children. They want to hear my story, and I theirs.

Our family book group selection this month included listening to an audiobook, narrated by the author, David Rakoff, entirely in rhyming couplets. He describes the daily life of a young man, Clifford, who is dying:

And so the concern with the trivial issues:
Slippers nearby and the proximate tissues

When Matt, in our conference call discussion, mentioned David's experience, I was surprised that I hadn’t consciously thought of my son while listening to this chapter. David, who rated nurses on whether or not they carelessly kicked his beloved crocs under the bed and thus out of his reach. He was obsessive about having his crocs nearby, just as Clifford became about his slippers.

The description of a young man dying was just too close to make the conscious connection and let it all the way in.

Psalm 22

Two Years Ago

End of January 2015

David starts his second 5-day round of decitabine infusion. It’s a fairly gentle chemotherapy; his beard continues to grow and he looks good. Decitabine is slow-acting, so we wait and hope it is attacking the leukemia factory in the bone marrow.

Last week of January 2017

A few weeks ago I listened to a episode of On Being, with Krista Tippet, a podcast I subscribe to. She interviewed Eugene Peterson and discussed his book, The Message: The Bible in Contemporary Language. I was gut-wrenched by his Psalm 22. In the King James version, which I am very familiar with, the psalm begins:

My God, my God, why hast thou forsaken me?
Why art thou so far from helping me, and from the words of my roaring?

Peterson's translation:

God, God . . . my God!
Why did you dump me
miles from nowhere?
Doubled up with pain, I call to God
all the day long. No answer. Nothing.
I keep at it all night, tossing and turning.”

The emotion is raw and powerful.

Today’s the last day of the first month of 2017. After a rocky start, I decided to take it easy and start my New Year on February 2nd, Groundhog Day. (Bill Murray’s movie may be my all-time favorite, which is saying something from a woman who can't ever decide: peach? blueberry? strawberry? I want all of them!) That movie is deeply spiritual to me.

So what does it mean to me, to start my new year? I’ve spent a month thinking about what I do and what I want to do. I’m grappling with the big question: how do I choose what to do among so many good, wholesome, and worthwhile activities?

I think it will be a long-term project.

Points of Light

Two Years Ago

January 23, 2015: David’s white blood cell count is very low: 3.42. Of these, 23% are leukemic blasts. [Spoiler alert: the percentage blasts will never be that low again.] Semi-weekly clinic appointments populate our weeks.

From my blog, January 19:

So, we continue trying to remember to appreciate each uneventful day. As Jim wrote in his summary of the past year: “Except for a few days of severe intestinal pain just before Christmas, the past five weeks have been the best since March. Mary, David, and I each seek in our own way to deal with the prospect of imminent death mixed with the ordinariness of one pretty good day after another.”

Mid-January 2017

This past week I’ve felt, at times, slow-moving and irritable. When I experience these feelings, I fear that it isn’t grief, but the dark side of manic-depression returning. (Like Richard Dreyfuss, I prefer ‘manic depression’ over ‘bipolar’. So descriptive of my actual experience.)
Since David’s death, and after my parents' deaths,I often facilitate the newcomers support group at DBSA-Boston (Depression Bipolar Support Alliance). I explain that for me, there is a distinct difference between grief and depression. I’ve been trying to come up with an analogy. Here's my latest attempt: it’s like the difference between a broken arm and a bone infection. They both can cause pain and swelling, but the etiologies are different and the conditions require different treatments.
When I am actively grieving, it hurts; I double over in pain. Grief is intense feeling; depression is a deadening, an emptiness I can’t fill.
So, am I getting depressed? I hope not. I’ve been stable for several years and I’ve gotten used to it. The prospect of going down into those depths frightens me.

But today I feel energetic and hopeful. It’s laundry day again, (it’s always laundry day on Tuesday, same day as my blog post), and laundry is a very satisfying activity, with a concrete and visible positive result.

Saturday evening, at 5 p.m., Jim took me for a spin in his new car. It was still light out; a welcome change from a few weeks ago when darkness fell at 4:30. We tooled down Lincoln St. and into the quiet town of Lincoln as dusk fell. Returning home, we drove around the block to survey our house from all sides in the dark. Jim bought replacement window-candle bulbs this year: LEDs. They are energy-efficient and will last a long time. They are also dimmer than the old incandescent ones and I wanted to see them from my neighbors' vantage. Their dim light looks more like real candles, little points of light in the winter night.

Your 'Why'

Two years ago
David’s white blood cell count continues to be low, though the percentage that are leukemic blasts goes up: from 5% to 16%. Every Monday and Thursday I take Storrow Drive to MGH for lab work while we wait to see if the decitabine therapy will work.

Mid-January 2017
Jim shows me a Michael Jr. video, where he explains that "when you know your ‘why’ you have options on what your ‘what’ can be." Watch this to hear “Amazing Grace” illustrate his point.

What’s your ‘why’ this month?

New Year, Week Two

Two years ago

On December 1, David began a round of decitabine chemotherapy. He had an infusion daily for five days, then a month off to let his blood counts recover.
Then, on January 2, David began a second round. He had some nausea and fatigue, but his red blood cell and platelet counts remained relatively stable. After the five days of infusion, he took three weeks off while his blood counts recovered.

New Year, Week Two

Friday afternoon, my therapist asked me for clarification: does the grief feel like an attack?
Yes, I feel ambushed. But what if I called them 'David moments', like Jim does? Grief hurts, but perhaps I can experience it differently.

Monday, I went to The Compassionate Friends meeting in Concord. Each person there has lost a son or daughter to death. It's a club no one wants to join. I told of my pain in trying to sing “Ring Out Wild Bells” the day before. Since my therapist's question on Friday, I’ve started re-framing. Yes, it’s the start of the second whole year without David. But it’s also the start of a new year of my life.

Matt spent the weekend with us before his big trip to Hawai'i with R'el. Now they've been in all 50 states. Next weekend they'll run a marathon on Maui: her third, his twenty-ninth. Unfortunately for him, his early Sunday flight was cancelled due to the big snowstorm on Saturday, however, we enjoyed his company for an extra day and a half. Monday morning we had a great discussion about anxiety and choice and enjoying life. Today both Jim and I feel differently about our day, more conscious of taking charge and making deliberate choices. I did little things: conquered the mare's nest of cords under our bed, laundered our clothes, played the piano.
I’m taking it slow: I made no dramatic resolution on January 1st, didn't promise myself to never miss a day of exercise or to read a book every two weeks. I'm gently considering how to live my life more fully. Can I appreciate the great gift of life I have?

"Ring Out, Wild Bells"

Two years ago

            New Year’s Eve, 2014, Matt drove David down to Manhattan to spend the holiday with all the siblings at R’els Manhattan apartment. Some went in costume to the midnight 4-mile run through Central Park.

New Year 2017

As I wrote last week, we had a lovely and quiet Christmas. The anticipation was hard; the actual experience sweet.
And then, on New Year’s Day, at the beginning of the closing hymn in sacrament meeting at church, I was in tears. I mouthed the words for half a verse, then gave up and concentrated on not completely breaking down.

The trigger? My favorite New Year’s hymn, “Ring Out, Wild Bells”. (the only one I know of). Every year, on the first Sunday in January, we sing it at church. It has beautiful, hopeful words and fun-to-sing harmonies, ending with a Picardy third. (For those of you that don't have Wikipedia handy, a Picardy third is a major (happy) chord at the end of a piece in a minor (sad) key.) It’s very satisfying to sing in four-part harmony.

“Ring out, wild bells, to the wild sky…The year is dying, in the night; ring out wild bells, and let him die.
“Ring in the valiant men and free, the larger heart, the kindlier hand. Ring out the darkness in the land...”

Later, as I wonder why that hymn hit me so hard (Jim calls them ‘David moments’), I realize that the dying year, 2016, was the first full year of David being dead. 2017 begins as the second full year. There’s one fewer valiant men, a missing heart, a kind hand stilled. Not only that, but he would have turned 30 this year.

New Year’s is not a holiday I think much about. This grief reaction feels like slamming straight into a brick wall I hadn't seen. I anticipated Christmas preparations would be hard; singing “Ring Out Wild Bells” blind-sided me.

Later, after dessert at our Weekly Gathering dinner (every Sunday we have dinner for about 20 guests), Jim gathers everyone into the family room for some singing. As I sit down, he starts to sing “Ring Out, Wild Bells”. Surprisingly, I can sing with gusto and enjoy the wonderful Picardy third at the end. Note to self: sing “Ring Out, Wild Bells” throughout the year, as exposure therapy.