Carol of Joy Mixed with Sorrow

Christmas snuck up on me this year. The distraction started with the trip to Montana for Duane’s funeral, followed by two and a half weeks in Southern California, enjoying Thanksgiving with family, the birth of Eliza Joy Johnston 2 days later, and finally Oma duty, cooking for the new parents and cradling Eliza.

After Thanksgiving the holiday lights started appearing in Maggie’s California neighborhood. I found it unsettling to see Christmas lights and decorations with temperatures in the 70s.

Tonight, on my way home from my weekly temple visit, I stopped to enjoy some houses in Lexington.

  The first is my second favorite house in the world. From each window shines a candle. The first-floor windows are nearly room-length and I've always fantasized being able to walk through one into a front room.

The little girl in me seeks out the multi-colored lights of my childhood in Pennsylvania. They aren’t common in Lexington; home owners (including myself) tend to the New England tradition of white candles in each window or a spotlight on the wreath on the front door.

2017 started out as the year David wasn’t going to turn 30. On Sunday the choir  sang “Carol of Joy” by Eileen Berry. Every time I rehearsed it, I wept, and the performance was no different. Although the carol's ultimate message is profoundly hopeful, pointing to the redemption of the fallen world and the deep joy of the Savior’s birth, the lyrics' depiction of dry, withered leaves, cold, barren hillside, and death holding the lonely, fallen world fast, fills me with sorrow.

Yes, Christmas is a time of joy and my experience with death deepens my hope. But it's intermingled with  pain at the closing of the second full year since David died.

         On a brighter note, we are expecting Peter, Xiomara, and our other two grandchildren, Andrew and Victoria, for the Christmas weekend. They'll bring their stockings to hang over our fireplace mantel. I've got all the ingredients for homemade egg nog and my mom's traditional Christmas lasagna (She hated roasting turkeys. Miss you, Mom!).

Candle Lighting and New Life

For The Compassionate Friends’ Worldwide Candle Lighting, we lit our double-wick maple butter candle along with the first and second candle of Advent. We paused a few minutes to remember David during our Advent supper. Over half of our guests were kids, some too young to remember David at all, the rest having barely known him. Of course, these children don’t know any of our grown children: to them we are grey-haired denizens of a two-person nest. It was a bittersweet moment, realizing that David will make no more memories and that no one new will get to know him: his thoughtful gifts, his dedication to hard work, his funny laugh.

David with Santa Claus at the Arlington Ward 2009

After my trip to Montana to attend my cousin Duane Hazen’s funeral, I flew to southern California to spend Thanksgiving with my sister, her husband, and some of our kids. Two days later, Eliza Joy Johnston was born to Sam and Savannah (Savam!). As a full-time homemaker, I got to spend the next ten days with them. I love the fresh, soft-as-satin skin, the huge eyes, the arch-less feet and tiny toes. Sunday morning Savam went to church while I minded Eliza; Monday they took a lunch date. It was hard to leave.

While staying with my sister, we took several one and two-hour walks along the “Fullerton Loop” trail near her home. Weather in the 70s, sunny and bright. Four days after I returned to Lexington, it snowed several inches, a sudden shock to my system. But on Monday the sun shone into my office window, intensified by the reflective snow in the yard.

Fort Benton, Montana

High on a windswept bluff in Big Sky Country, overlooking the Missouri River, my people are buried, including my dad’s parents, Logan and May Hazen, and May’s parents, Gustav and Augusta Bruesch. And now my cousin, Duane Allen Hazen.

Three years ago, we visited Riverside Cemetery, with my dad, who grew up near Fort Benton, then lived in New Jersey 63 years. When my dad died later that year, and his only surviving sibling, Uncle Herb, moved to Helena, I didn’t expect to return. Then Duane died unexpectedly. Jim and I were already planning to fly to Salt Lake City, so I bought a ticket for the Salt Lake Express to Great Falls. When I set my alarm wrong and woke up just as the van was leaving Salt Lake, Jim drove 80 miles to Tremonton, Utah, to catch it. The 15-passenger van arrived and I climbed into the only empty seat, which was sopping wet and directly under a leaky roof vent. Water dripped on me at every curve in the highway until the rain stopped and the vent emptied, but I was grateful to have a seat at all.

The memorial and graveside service were Saturday morning. Later that afternoon, I returned to the family plots and made a map. Wilbert Freddy Bruesch’s marker, flush with the ground, was covered with dirt, so on Sunday I borrowed a large stockpot and scrub brush from the church kitchen and returned once again. The red granite stone was hard to read: the raised letters are worn. They tell a sad story; my grandmother's younger brother, Wilbert, was five and a half when he died in March of 1913. Her son, Donald, died at age two in 1927. The club no one ever wants to join: my grandmother and great-grandmother lost sons too young.

Amadeus

              Months ago, Jim purchased tickets to the movie Amadeus at Boston Symphony Hall with the orchestra and chorus of the Haydn and Handel Society.

              The  stunning cinematography on a huge screen, coupled with the concert hall acoustics was nearly overwhelming.

Spoiler Alert: Mozart dies at the end. Yes, I knew that.

Near the end of Amadeus, a deathly ill Mozart dictates the Requiem “Confutatis Maledictis” (while the wicked are confounded) to Salieri. Mozart, too exhausted to continue, falls asleep. His wife returns to the apartment and confronts Salieri. When she finally turns to Mozart, she sees his open eyes lifeless and staring.

              After David died, I saw a movie character die on camera. It was such make-believe to me. How could an actor mimic a dead body?

              Tim Hulce could and did. His eyes in that death scene brought me right back to a certain August night.

              The following hearse scene transported Jim and me to our bedroom window, watching the taillights of a long, black hearse recede down the driveway. The amber turn-signal flashed silently a few times and the hearse turned towards the highway. Amadeus captures the anguish.

              Afterward the standing ovation, Jim and I sat back down, as the crowd buttoned their overcoats and moved slowly towards the exits. I nestled my head in the hollow of his shoulder and wept, overcome with emotion.

              Today, as I drove home from the Bedford Library, I realized that I would pass by David’s cemetery. I hadn’t visited his grave in months. The remaining ochre and brown leaves on the trees blended in with the dark pine boughs. I knelt on the damp grass and wiped away a few spindly pine needles and short blades of cut grass from the stone. Even now, it seems unreal.

Sunday, November 5, 1995

Thursday evening, November 2, my 39th birthday. I rode the ‘stake temple bus’ to the Washington, D.C. temple. Before the Boston Temple was opened in 2000, our stake (a collection of 10-12 congregations) sponsored a temple bus a few times a year. We’d board the bus around 9 p.m. and ride 450 miles, arriving at the temple around 5:30 a.m. After a full day of worship, the bus would take us to a motel and early next morning we’d be back at the temple. I’d get back home Saturday around midnight, sleep-deprived.

A dangerous schedule for someone who was hypomanic, but we hadn’t ever heard the term and certainly didn’t know it applied to me.

Sunday morning I was back in my head-lice-infested household. My long hair was at risk. Our dear Finnish friend, Maikku, offered to drop by and nit-pick.

Maikku and I stood in the warm autumn sun at the bottom of our kitchen porch steps. She gently combed out my long brown hair with a very fine-toothed comb. Although she was picking up houseguests at the airport, she took the time to help a desperate young mother.

By Sunday evening, I realize now, I was far gone. I believed that evil men were plotting to kidnap our oldest daughter. I’ve tried many times to describe my paranoia. It felt like certain knowledge, as if I had been in the same room with these evil men and was privy to their conversations. I think I knew I hadn’t heard a conversation, but I was certain of the danger and furious that Jim didn’t take me seriously.
No one took me seriously. They took me to the emergency department instead.

Half a Bubble Off Level

Halloween Day and no frost yet. Late October in 1995 was unseasonably warm as well. The trick-or-treaters love it: no coats over their costumes.

22 years ago was the autumn following my glorious Cross-Country Trip: 15,900 miles in ten weeks with six kids.

For the Fiske Elementary School Halloween party, I dressed up as the nineteenth century poet, Emily Dickinson. I donned a full-length dress and wore my hair in a neat bun. I probably ate orange-frosted cupcakes at the party.

Afterwards, I drove to Sears in the Burlington Mall to shop for a dress. The saleswoman watched me warily. She didn’t confront or even engage me, but I knew she thought I was acting strangely, Emily wandering among the Sears dress racks. She was right.

In the evening, I took the kids to a new neighborhood, on North Ave. I dropped my keys somewhere in the gutter and did a search and rescue: kicking up crisp dry leaves, listening for the familiar jangle of keys. Doesn't sound crazy, but in retrospect, I was “just half a bubble off level.”

          I love that phrase. Makes me tip my head sideways about 30 degrees.

          I was mostly sane, and what I did seemed within normal limits, but soon the squirrels in the attic would take over. (We once had squirrels. Saturday mornings we would lie in bed and hear them scamper after each other behind our bedroom wall.)

          Halloween 1995: in just five days time, I'd be psychotic.

Speared Like a Fish

This memory is from a visit to St. Croix, U.S. Virgin Islands. For years my parents owned two condos on Sunset Beach north of Frederikstead and generously invited me (and many others) to share America’s paradise.

The flesh between my shoulder blades crawled. I was certain that I’d be speared like a fish at any moment.
When Dad suggested a night dive off the Frederiksted Pier, I was delighted: I’d never been on a night dive.
Diver Dan, our friend from the local dive shop, met us at the pier in his pick-up truck to drop off the heavy gear. The dive plan was simple: as dusk fell, we’d each prepare our gear (buoyancy vest strapped to the 3000-psi air tank, regulator screwed on, weight belt around the waist, mask and snorkel in place, fins on feet, and lights on wrists) and jump off the pier into the water. In an hour, Dan would return and be waiting for us in his boat. Climbing onto his boat, we’d be able to get back on the pier easily.
Dan hefted the tanks and weight belts from the truck bed and set them down near the pier’s edge, then stood expectantly. “Need any help?”
“We’re all set, Dan, thanks a lot.”
As we sat at the edge of the pier, a group of four or five teenage boys roughhoused toward us, horsing around, pushing each other and talking loudly. One boy slammed another towards Dad. The second boy’s arm flew out and hit Dad on the side of his head, hard. Dad shook his head slowly and looked dazed.
“Sorry.”
Dad turned to the first boy: “Whatcha do that for?”
No answer; they continued down the pier, jostling and jabbing each other, laughing as they went.
“Are you all right, Dad?”
“Yeah, I’m okay. Let’s go.”
We jumped in the water and started our descent. The sandy bottom sloped gently down to a 25-foot depth at the end of the pier. Brown clawless Caribbean lobsters scuttled along the sand; boxy, improbable trunkfish with big bulgy eyes, honeycomb skin, and tiny fins navigated among the sponges; juvenile French angelfish, bright yellow stripes on black, fluttered past.
Usually during a dive I’d swim slowly, quietly taking in the scene. The beam of my light changed the grey amorphous shapes to bright red, orange, purple, and yellow mounds of sponge and coral. But that night I hardly noticing the beauty around me, obsessed with the space between my shoulder blades. I vividly imagined the pier above us, convinced that evil men with spear guns were waiting patiently for us to swim into range. We’d be easy targets. Usually I was proud of how well Dad and I conserved our air, barely moving our arms and legs, breathing slowly and deliberately to stretch out our time underwater. But a cold, black fear possessed me. Scuba diving was not worth dying for. The dive dragged on, but I was terrified of the moment when we would have to swim out from under the pier.
We swam along the north pillars, then turned around and headed back along the south. My depth gauge dropped from 25 to 20 to 18 to 15. At ten feet, I looked up and saw Dan, leaning over the stern, ready to help us out of the water.
“How’d it go?” Dan asked.
“The dive was wonderful.” Dad replied. “But there were some boys scuffling on the pier. One of them fell into me and hit my head, hard. I saw stars.”
“Who were the kids?”
“Oh, just some local teenagers.”
I listened silently to them, embarrassed at how my imagination had run away with me. The boys were long gone, and no evil men had ever been lurking on the pier.
For years I carried that night dive memory as a cautionary tale, that recreation is not worth dying for. Now, I understand the experience differently. Paranoia is a term bantered around easily. But the cold, black fear I experienced on that dive haunted me for years. Those spear guns were as real to me as the scuttling lobsters with their waving antennae. The skin between my shoulder blades still crawls when I think of that night dive.

Her Leaf Also Shall Not Wither

December 2003

Barefoot, I creep up the carpeted stairs in the dark

Drawn to the far attic corner.

I’m frightened, but am pulled forward.

Something draped in loose linen beckons,

Perfectly silent and still.

My trembling hand reaches out, my fingers grasp the cloth and pull,

Revealing a small, pinkish mass of many folds.

With tender curiosity, I study my brain.

Gently I wrap it in the cloth and cradle it in my arms.

I’m surprised how soft and smooth it feels,

Like a newborn, warm and supple.

Drowsy, I hold it close and lie down on the spare bed.

When I open my eyes again, 

I’m beneath a great oak in a large meadow.

My eyes trace the paths of the crooked limbs,

Spreading out and away into a thousand bends and branches.

Sap feeds every twig and leaf.

A warm breeze brushes my cheek and each leaf responds.

Peace seeps into me from the tree roots.

I close my eyes once more and drift asleep.

Concrete at Alewife

Back in my energetic thirties, every few years I’d get the urge to become a long-distance runner. One sunny day in February, I made a new start. I drove to East Arlington, for a replacement windshield. The shop is about a mile from the Alewife T station (subway), the end of the Red Line. The snow was brilliant in the late winter sunshine, the sky azure, the puffy clouds matching the snow, and the temperature about ten degrees above freezing. I jogged down Varnum Street to the commuter bike path, then past the wide expanse of empty playing fields and under Route 2. My end goal was to touch Alewife’s exterior wall. I crossed the final street with my fists balled and arms pumping. Focusing on a strong finish, I sprinted across the wide sidewalk. Only as I took my third step did I sense something was wrong. Glancing at my feet, I realized with horror that my ankles were embedded in fresh, wet concrete. Behind me were two deep footprints. I started to bolt in guilty panic, but looking up, I noticed, for the first time, three workmen, in splattered tan overalls, watching intently. I was trapped; the young one could easily outrun me. Police lights flashed before my eyes and I saw myself facing jail time, and a huge fine, for destroying public property. How much did a new sidewalk cost? I sheepishly squished back into the street.
“Oh, I’m so sorry.” I grimaced and shook my head in sincere contrition.
“No problema, no problema. The back of the truck.” The smiling workman was pointing to a large tanker truck parked next to the sidewalk. Seeing my confusion, he pointed again.
“Water.”
I saw an old red hose wrapped around a steel wheel on the back of the tanker. Another workman walked to the truck and put his hand on the tap.
“No, it’s okay, I’m okay.” Mortified, I turned back toward the bike path.
“Water, water!” he said, helpfully.
Since they didn’t look poised to call the police, I walked over to the hose. The man turned the tap and I hosed down my legs; the concrete was caked halfway to my knees.
I admired my sneakers, whiter than they’d been in a couple of years. As I pivoted around to face the sidewalk, One of the workmen was smoothing the concrete with a long two-by-four, my transgression completely erased.
Blushing with embarrassment I apologized once more, then resumed my jog back toward my car. Feeling my ankles flex with each step, I gradually realized that by then the concrete would have been hardening around my sneakers and up my jeans. How would I ever have escaped the concrete boots? I was grateful for the kindness of strangers.

Committed?

I was shopping for airline tickets last month; Jim and I are planning a Western jaunt to visit children and relatives in Utah and California around Thanksgiving, so I was looking into travel options.

Friends of ours have TSA PreCheck. For $85, TSA offers 5 years of streamlined airport security lines, leaving shoes and jackets on, and laptops and toiletries tucked into carry-ons. No more worries that I’ll forget my laptop or toiletries on the belt. No more awkwardly putting my shoes back on and hobbling to a bench to tie them.

So, I started the TSA online application. After asking whether you are a US citizen or otherwise documented, it offers this advice:

"If you answer 'Yes' to question 2, 3, 4 or 6 you may want to reconsider applying…Application enrollment fees are not refunded once submitted."

No, problem. I have no criminal record. But question 6 stopped me in my tracks:

“Have you ever been found by a court or other lawful authority as lacking mental capacity or involuntarily committed to a mental institution?”

In 1995 I had a psychotically manic episode. After several hours in an emergency department, Jim signed a paper committing me to a locked psychiatric unit. A powerful anti-psychotic drug wrenched me back into reality: I was truly and quite literally temporarily insane. This was a shattering and life-altering experience. Because of it, I diligently take my psych meds and regularly see my psych nurse practitioner and therapist.

I’m confident that I’m an extremely low risk to the flying public. I love my country; I have no desire to harm other people.

After reading the TSA question, I did some web research. I only found one source addressing Question 6: Katie Rose Guest Pryal . (She also posted here.) Katie Rose applied for the TSA PreCheck and was stopped in her tracks by question 6 as well. But, although she has depression, she has never been involuntarily committed. I appreciate her essay, but I was disappointed not to find more discussion on the web.

According to oyster.com:

"Almost anyone can qualify: It’s not just for diplomats and dignitaries. The only requirements are being a U.S. citizen or lawful permanent resident. Disqualifications may include customs violations, having been convicted of a crime, or being under investigation for a crime (and they will check!)."

This breezy and cheery website doesn’t mention Question 6. I feel angry and helpless.

Post-script

At supper this evening, Jim suggested we apply for the TSA PreCheck. I told him I was blogging about it tonight and we discussed the situation. He came to the conclusion that Katie Rose had:

"(I)n the end, the difference between involuntary commitment and voluntary commitment, so much of the time, is simply having someone tell you these words: “Just go voluntarily because otherwise you will have this on your record.”"

          Too bad we weren't given that advice in 1995.

          Although he didn’t voice an opinion in either direction, our conversation started me wondering: was I being defeatist? Was it worth $85 for a shot at getting the clearance? But, if I were rejected, would that permanently mark me as an undesirable? I might stand a chance in a face-to-face interview, especially if I dress well and have Jim with me. But the online application is the first hurdle and it's a close-ended questionnaire, with no essay options.

I did some more web browsing. This "complete guide" states:

"The US government says it will reject anyone who has been convicted of a crime, has violated customs or immigration regulations, or is under investigation by law enforcement. You will also be rejected if you provide false information on your application, so spend some time getting that right. Of course, customs and border control agents also have discretion to reject anyone they declare isn’t a “low risk.”"

So, dear readers, what do you think? Should I apply for the PreCheck?

Hypomania and Sleep

A man at my bipolar/depression support group, who has “unipolar” depression and never experiences mania, was surprised to hear a group member express deep concern by the lack of need to sleep. This man, who had never experienced mania, couldn’t imagine the brain overriding what seems like an inherent, biological need for sleep.

You would think that lack of sleep would always lead to exhaustion. You might rise to the occasion and deal with a crisis by great effort, but eventually you’d collapse as sleep deprivation took its toll.

For 10 weeks of the summer of 1995 I was energized as I drove our six children, ages four to fourteen, 15,900 miles, to the 48 contiguous states and into Mexico and Canada. I was wise enough to go to bed by 11 p.m., but during the day I went full throttle: taking care of six kids, sightseeing, and driving at least 300 miles most days. By the end of the summer, I had accomplished my goal.

After our return, as the fall progressed, sleep became more and more optional. In hypomania, some people survive, even thrive, on no sleep for days. That fall, I only needed 4 hours a night.

I once told my therapist, David Battit, that I was always grateful that I did the trip before being diagnosed with manic depression (my preferred term for 'bipolar'). I wouldn’t have had the nerve to do it, after learning about mania and sleep triggers. He looked at me sharply and I suddenly realized for the first time, and then admitted, “It’s good I didn’t go manic on the road. All those kids, so far from home.”

I didn’t play the scenario through during that conversation, but now, 13 years later, with more experience of my own, and a knowledge other people’s bipolar stories, I realize that it could have been more awful than I could imagine back in 2004. My behavior could have become so erratic that someone would have called the police. I could have been incarcerated or at least forcibly put in a locked psych unit. What would they have done with the kids? Put them in emergency foster care or police custody until Jim could arrive?

And I would have been devastated afterwards. To have put my kids in danger. To have been totally undependable and unreliable.

Hypomania is a temptation I live with. When I’m having a personal pity party, I complain: Jim can have a great day of high energy and peak experiences with creative flow. When he jumps out of bed before his alarm goes off, he doesn’t immediately think, “Did I miss a dose of my psych meds?” But every time I have a peak experience day, I have to check in with myself: did I take my meds?

Most days it doesn’t bother me, and as I’ve learned to live with the drugs that tamp down my elevated moods, I find that I can still experience energy and creativity, and be productive. Pysch meds aren’t perfect: side effects range from annoying to debilitating; some cause long-term health problems, raising the risk of developing diabetes or kidney disease. But, for me, they’re the best thing I’ve got in my anti-mania toolbox right now. If there weren’t any psych meds, I probably couldn’t have successfully raised my kids; I probably would have spent many months or years in mental hospitals. They’re not perfect, but for me, for now, they are better than the alternative.

Cambridge, Boston, and Ashford, Connecticut

This week Annie’s mother-in-law, Jennifer, and her friend, Joanna, visited. They live in Tianjin, China, the river port of Beijing. I picked them up at the airport on Friday and we spent Saturday together. The highlight of the day was a Boston Duck Tour, narrated by “The Codfather”, very informative and funny.

Made me fall in love with Boston all over again. And quite a contrast to the last time Jim and I were in Harvard Square, two days after Corey Johnson died. We saw Columbus, a movie set in Columbus, Indiana, where we spent four formative years in our early marriage. After the movie, I had no desire to wander: I felt a sad nostalgia as well as grief over Corey's death (and by extension, David's) and just wanted to be home. I felt like I’d never want to be part of the vibrant street life again. But the feeling didn't last.

Sunday morning, I drove Jennifer and Joanna to Ashford, CT. Connecticut has this in common with New Jersey: many people only know the cities and highways, but there are rolling, forested hills and meadows, farmhouses and fields. I tried to see the drive through Jennifer’s and Joanna’s eyes and wanted them to see everything. We had a short English lesson on the difference between a house and a building. Then Jennifer wanted to know what a ‘home’ is. How would you explain that?

Corey Johnson

              The day after I posted last week, tragedy struck a sweet family in our congregation. Corey Johnson, 40 years old, died suddenly and unexpectedly in her sleep, leaving a loving husband and four children, ages 8 to 17. I offered to bring a meal over for them and their visiting family on Friday; I spent all afternoon on it, very therapeutic.

              The funeral yesterday was beautiful, though achingly sad. Corey made ‘best friends’ everywhere she went. Four of them spoke wonderful eulogies and a women’s ensemble of about 30 'best friends' sang her favorite Randy Newman song, “Feels Like Home”. In the foyer there was a slide show and photo display. My favorite item was a wooden block that announced, “You call it chaos, I call it family.” I remember that stage of life.

              Cort and Corey grew up in Great Falls, Montana, met when Corey was 15, and have been madly in love for 25 years.

              I sit on my kitchen porch as I write. A robin is perched on a leafy bush, flitting from one branch to another, then hops down onto the cracked asphalt driveway. It's not a robin; it’s more slender, with a speckled, dusky-golden breast. As I lengthen my gaze to look out over our large circular driveway, there’s another, similar bird and, on the lawn beyond, are two actual robins. A squirrel leaps among the tall grass on a small embankment; I spy another on the far side of the maple trunk in the middle of our driveway. A tiny chipmunk bounces across the asphalt and then a splash of grey and white feathers swoop down the driveway 15 feet in front of me.

              Crumpled brown and green leaves are falling from the maple tree. It’s been ravaged by winter moths for several springs, so it sheds its leaves early. All around me are many shades and hues of late-summer green: forsythia, quince, maple, geranium, chrysanthemum.

          Several years ago, Jimmy and Beth, Johnston third-cousins from the Orkney Islands north of Scotland, visited America and stayed with us a few days. I was excited to host them and had visions of taking them up to the observation deck of the Prudential Building and along the red-brick Freedom Trail. But they had no interest in the big city. Jimmy is a retired lighthouse-keeper and loves the quiet life.

Their favorite activity (activity?) was sitting on this same kitchen porch and watching the squirrels cavort in the grass and trees. I think I understand better now. Sometimes watching squirrels is the best thing to do. And I appreciate the little critters more: there are no squirrels in the Orkneys. Imagine, having to travel to America to watch grey squirrels.

                                                    

              In my experience this week, I find that grief doesn’t ever get better, but the acute stage doesn't last as long. Reacting to Corey’s death, Cort’s widowerhood, and the newly-motherless children, I mourn for them and miss David. Today is the second anniversary of his burial and the 25^th month since his death. When I sob, it’s just as bad as it was that first night. But today I also bought groceries at Market Basket, walked three miles with my Austrian friend, Susanne, and showed her a Duolingo German lesson, my latest enthusiasm. I started an adult religion class and went to the temple. It’s been a full day; I’m living a full life. But the grief can break through at any moment, as it has this week. As Jim asked, “How did we ever get through it?” How will Cort?

New Hampshire State Road 101

Two years ago

In my weekly blogging, I’ve passed a milestone: it’s now more than two years since David died. I’ve ‘unpinned’ my Word document that has all my blogposts from May 2014 to August 11, 2015: I won’t be referring to them weekly anymore.

I’ve been blogging every week for over two years. I pledged I’d post each week and I have. If you want to read how the first year of mourning went, you can go back to those posts. Two years on I am doing much better and I’d like to expand my offerings. I hope you’ll continue on the journey. I love writing to you each week.

When David was three years old

Back in 1991, New Hampshire State Road 101 was a small, two lane highway which ran from Manchester, where we lived, to Hampton Beach, a village on the 13 miles of New Hampshire seacoast. Winding around bedrock outcroppings, it was notorious. Small white crosses dotted the side of the road, some with weathered bouquets of plastic flowers. Grim markers, they identified the location of fatal accidents and warned of the dangers of driving too fast on a small country highway. I was barely aware of them on my carefree drive to the beach, but noticed each one on the long drive back.

The day after Labor Day and there are just two other cars in the huge parking lot at Hampton Beach. I open the blue minivan hatch:
        “Rachel, you take the blanket; Peter, the cooler; Matt, the sand buckets; David…David?...Where’s David?”
        Silent blank stares from each of my children. Incredulous, I frantically lean over and see the empty back seat, then scan the area outside the car.

“Get back in the car!” I bark, and run for the pay phone. No answer at Jim’s home office. Linda and Kayleen: not home. I envision the police finding David and not giving him back.
“Hello?”
“Oh, Sue! This is Mary Johnston, next door. Could you go over to my house? I think I left my three-year-old home alone.”
Over the phone, I hear her kitchen door squeak open, then mine, then her faint footsteps down the carpeted hall of our little white ranch.
“There’s a little boy asleep on the bed. He’s got brown hair.”
I start breathing again.
“I’m at Hampton Beach. I can be back in an hour. Can you wait there?”
“Sure.”
Driving past the grim white crosses, I prep my kids: “When we get home, we’re going to do whatever David wants. If he wants to stay home, we’ll stay home. Whatever he wants.” Dissent is not an option.
David wakes up just as I enter the house. Sue shrugs as I thank her, then walks her cordless phone back to her house.
“Mommy, why did you leave me?” are the first, plaintive words out of his mouth. They cut into my heart.

How did it happen? Before starting off for the beach, I had gone to the bank drive-through, then back home for a forgotten lemonade thermos. Peter jumped out to get his GI Joe; I didn’t see David following him.
Thermos retrieved, I got back in the driver’s seat and watched through the rearview mirror as Peter buckled himself in. Then I sped out of the driveway. David heard the car leave, ran to the door, but couldn’t open it. He pulled a kitchen chair up to the counter and stole a marshmallow from the cupboard, then went in to his little aviator bear, Radar, and fell asleep.

        When he woke up, there was a strange lady in his room, with a phone in her hand. He heard the front door slam and his mom’s footsteps in the hall.

At that time, I hadn’t yet seen the popular movie, Home Alone, but had heard the plot and dismissed it out of hand as unbelievable. How could parents fly to Paris and leave their young son asleep at home? How could a mother go on vacation and leave her child?

I’d done just that.

I love the comedic actor, John Candy, who plays Gus Polinski in Home Alone. Gus and his fellow polka-band members have rented a large van to drive to Milwaukee after their flight is cancelled due to a winter storm. The mom is snowed-in as well, and Gus offers to give her a lift to Chicago, on the way to Milwaukee. Riding in the back of the van with him, the guilt-ridden mother asks:

“Have you ever gone on vacation and left your child home?”

Gus answers:

“No. No...but I did leave one at a funeral parlor once. Yeah, it was terrible too. You know, I was all distraught and everything. You know, the wife and I, we left the little tyke there in the funeral parlor all day. All day! You know, we went back at night, when, you know, when we came to our senses, and there he was. Apparently, he was there all day with the corpse.
"Yeah, he was okay, you know, after six, seven weeks, came around, started talkin’ again. But he’s okay. You know, they get over it. Kids are resilient like that.”

It took a long time before I could laugh about that day. I never asked David what he thought about it. I suppose at first I didn’t really want to hear. And now he can’t tell me.

Mesa Falls Half Marathon

Two years ago

At 11:00 p.m. on August 12, 2015, our identities forever changed. From that moment until the day I die, when I say, “We have six children”, I will wonder: should I mention David? Do I want a total stranger to feel forced to offer condolences? Will sharing my grief cast a pall on a casual conversation? Will I be judged as malingering, wallowing in my grief, not moving on? Will I be the one judging myself harshly?

So, I continue to say, “We have six children”, but constantly debate whether to bring the subject of David’s death into first-time conversations.

Mesa Falls Half Marathon

On Saturday, Matt completed 31 of his 50 planned marathons (His goal is to run one in each state). He had chosen the Mesa Falls Marathon in Ashton, Idaho, since it coincided with our annual Summer Retreat and total eclipse trip. Peter and Matt ran full marathons, R’el, Xiomara, and Annie ran half marathons, Sam and Savannah ran the 5K, and I walked the half (in 3 hours and 44 minutes: my personal best).

Within the first mile of my walk I struck up a conversation with Karen from Indiana, a woman very near my age. We were setting similar paces, so we ended up walking the entire route together. Somewhere near mile 8 of 13.1 the subject of children came up and I said, as I always do, “We have six children.” I didn’t immediately mention David, and debated a bit, but when she asked with sincere interest where each lived, I included David in my tally.

It felt like a turning point. I took a leap and risked the label of malingerer. I realized that part of my story of motherhood is David’s death and my grief. Anyone who thinks about it (including myself) and has a gentle heart will recognize that I never will ‘get over it’. The risk is mostly an internal struggle in me. I build a wall around my heart. I don’t bring it up to preempt anyone else criticizing me, even silently.

Path of Totality

Two years ago

David died on a Wednesday, August 12. Since David donated his body to the U Mass Med School in Worcester, we made no immediate plans for his burial: his body might be in Worcester for up to two years. With no body, we could have no wake and needed no funeral home, so we had visiting hours at our home Sunday afternoon and a funeral at our church that evening. I was deeply touched by all the family and friends who came to mourn with us.

The next morning, Monday, we packed up and left for our annual Summer Retreat with our kids in the Catskill Mountains in New York. Several months before, we had rented the house with the understanding that we might not be able to use the house if David couldn't travel. Sadly, , we were free to spend the week away from home.

So we spent the first full week after David’s death together in the beautiful Catskills. With all my focus on David for the previous 17 months, I hadn’t planned for the Summer Retreat: I couldn’t predict whether or not we’d actually go. Five days after his death, looking through a picture-window at an idyllic view of meadow and hills, I began a schedule of who would be around for each meal. Days of the week across the top of the paper, a column of names at the side: Jim, Mary, R’el, Peter, Matt--------I plunged into the chasm between Matt and Annie, where David’s name had always been. For 24 years, six was the salient number: six seatbelts, six Christmas stockings, six colored tumblers at the table, (a different color for each child: David’s was a beautiful blue). Suddenly I plummeted into a world of fives. I felt like I’d fall forever.

American Solar Eclipse 2017

Last February, our friend, Lee, told us about the August total solar eclipse. After 40 years, he could still vividly describe the previous solar eclipse he had witnessed. Inspired by his fervor, Jim searched online and rented the last house in Island Park, Idaho, near the path of totality. His cousin, Laura, graciously agreed to host us for the day in Rexburg, Idaho, so we could be in the path of totality. The eclipse coincided with our Summer Retreat, and we all were able to meet in Idaho.

I can state emphatically that being in the path of totality was totally worth the effort. As we watched (with our approved solar eclipse glasses) all the gradations from 1% to 99% of totality, we could see that the difference between 99% and 100% is “like the difference between day and night, literally. It’s like turning a light on and off. There’s no in-between. Either you’re in the path of totality or you’re not.” (nationaleclipse.wordpress.com) As CNN reported, "Even at 99% obscuration, the Sun is still 10,000 times brighter than it would be during totality!"

And what was the difference? The intense view of the sun’s corona blooming out of the pitch-black moon, the dark blue dome of the sky, the horizon still light, like a gentle sunset surrounding us in every direction.

Moon surrounded by the sun's corona (R'el Rodriguez)

I’d heard that the animals and birds in the area would go crazy during the sudden change from day to night. As we experienced totality, we whooped and screamed, mocking ourselves with shouts of: “The animals are going crazy!”

After the eclipse, we drove to Shelley (2 ¼ hours to drive 40 miles in post-eclipse traffic) to visit with Jim’s mom and other relatives. Aunt Arlene is an especial favorite of mine. We share a common bond: her son, Doug, died at age 24 in a horseback riding accident. A very different loss: Doug was riding alone in the wilderness and was missing for days before his body was found. Doug died fifteen years ago, so Peter and Arlene are further along in their bereavement, but it’s still a very tender topic: you never get over it.

And as I reflect on the peak experience of the solar eclipse totality, I feel a twinge of survivor’s guilt, that I’m intensely alive and David is dead. Am I less of a mother to feel such powerful joy? It’s a rhetorical question, but an emotional-charged one. Intellectually I realize I’m not heartless to enjoy my life to the fullness. But there’s a piece of my heart that hurts when I realize I’m not thinking of David constantly.

Happy Birthday, Victoria!

Two years ago

Monday, August 3, 2015, David’s white blood cell count had risen from 1 to 8.29, concerning but still low. But the Thursday blood draw showed the counts had risen to 130. For an older person, that would be lethal. With a 27-year-old who had been Army-fit just 17 months ago, it was impossible to know how long he had, but I pressed Dr. Fathi: he told me he didn’t expect David to live more than a few days. People sometimes complain that doctors predict outcomes and are wrong; I was very grateful for his best guess.
Sam arrived Saturday from California; he hadn’t seen David since April. Matt had accepted a job offer at the admissions department of Clark University in Worcester, less than an hour away from us. So, he put most of his belongings in storage in Chicago and drove home, arriving Saturday afternoon.
Friday night Jim slept on the floor next to David’s bed; Saturday Sam slept on the couch nearby. David alternated between sleeping and lying quietly awake, reading The Economist magazine in snatches and sipping warmed honey water. For weeks he’d had throat pain; now he complained of hip pain, probably a result of lying still too long. Martin, the weekend hospice nurse, didn’t expect it to go away.
Annie arrived home from Beijing Monday night, August 9th.


David’s last days were sacred and intensely sad. I am so grateful we were able to provide a peaceful place for him to die.

August 12, 2017

Victoria was born 40 minutes after David died.  Approaching the second anniversary of David’s death, and Victoria’s second birthday, I was ready to make August 12th a celebration of Victoria’s life and October 4th (David’s birthday in 1987) a celebration of David’s. We plan to hold an annual blood drive for MGH in his memory on the second Saturday in October. (Let me know if you're available.)

Since Victoria’s birthday fell on a Saturday this year, we spent the day at the Bronx Zoo. We picked Matt up in Worcester and found street parking just outside the zoo. (It was because Xiomara was in the car: she's the parking space queen.) At the children’s zoo, Victoria proved fearless as she enthusiastically held out her hand to let the sheep and donkeys fed directly from her hand. A mother chided her six-year-old daughter, "See, that little girl isn’t afraid." I felt sorry for the older girl.

At a picnic table we ate Xiomara’s chicken salad, finishing off with some (very tasty and gourmet) vanilla cupcakes I made. Then we watched the sea lion feeding and show. By closing time I was tuckered out: I had only gotten 5 hours of sleep (anticipation insomnia).

The early evening was harder. We visited my younger brother, Mike, in a hospital in Paterson, New Jersey. A kidney infection had caused extremely low blood pressure (79 over 54).

Mike is severely intellectually disabled. As a child he learned to walk and talk, recite the alphabet, and feed and dress himself. But at age 13, his epilepsy got out of control and he went into a state of constant seizure. When he stabilized, he was never the same. For many years now, he has been wheelchair-bound and unable to speak or do most ADLs (activities of daily living).

It was hard to see Mike in a hospital bed with various tubes entering his body. I wonder what he thought, how he was handling the unfamiliar environment and strangers doing strange and sometimes painful things to him.

The visit brought back memories from May of 2014: while I was in Pennsylvania to walk a half-marathon and then visited my dad in New Jersey, David got a C-diff infection and almost died. The surgeons removed his bowels. When I returned to him in Bethesda, I was confronted with a horrible sight: my son unconscious in a SICU bed, his face smooth, beardless, and ghostly white, his body seemingly lifeless. Just two days before, I had visited Mike, who was in a hospital in New Jersey that same week. The impact of seeing first my little brother and then my son unconscious, with tubes in their bodies, and very sick, pained my heart. Would either of them recover? Would David ever be the same?
Except for his death, that was the lowest time in our 17-month experience with David’s leukemia.

When we returned home Saturday night, there was a bouquet of flowers on the porch from some thoughtful friends and a sympathy card in the mail. The next day another dear friend gave me a hug. I don’t need everyone to remember our loss: life moves on. But it feels good when one or two do.

I was glad the hospital visit was after Victoria’s birthday party. Sunday morning I woke up and cried, but I have experienced healing: I didn’t fall into a gaping chasm.

Boots Among the Pine Needles

Two years ago

On Thursday, July 30, 2015, David was discharged from Lunder 10 at Mass. General, his last in-patient experience. Because he was a 27-year-old young adult and therefore an atypical hospice patient, (hospice, like leukemia, is overwhelmingly an old person’s experience), Good Shepherd Hospice accepted David as a patient while he continued active treatment at MGH to keep the leukemia at bay, receiving blood transfusions and continuing to take the chemo drug, hydroxyurea. I planned to continue driving him to Cox Clinic twice a week, though actually, we only went there two more times. The Lunder 10 discharge was scheduled for 11 a.m., but in true hospital-time fashion, we weren’t cleared to go until 4 p.m. Meanwhile, the hospice nurse, Luis, and a social worker, Robert, waited in our driveway until their shift ended. They went home and later in the evening a night nurse visited and we took delivery on some IV morphine cassettes.

A few days before David was discharged, my friends, Sarah and Birgit, helped me thoroughly clean the dining room in anticipation of David’s homecoming. A medical supply company delivered a hospital bed, tray table, oxygen concentrator, portable oxygen tanks, and a suction machine (to clear throat secretions. Gratefully, I never had to use it.) Moving the dining room chairs to the basement and replacing them with the medical equipment, and taking the leaves out of our antique oak table to convert it for sickroom duty, all made his imminent death more real, though nothing could really prepare us.

David appreciated not having to climb up and down stairs: the microwave and drink supplies were now in the next room. Our couch was just on the other side of his bed, so he could come in and watch a movie with us. I don’t remember if he ever did.

I spent at least three hours studying the procedure for giving David sterile dextrose water by IV. I read and re-read the instructions, made myself a spreadsheet with detailed and thorough, step-by-step instructions, reviewed and edited it over and over again. And still I was nervous every time I did it.

R’el brought two-year-old Andrew up from NYC for a four-day visit. Xiomara was due to have their baby any day, so she and Peter had to stay close to home. David enjoyed seeing his curly-haired nephew and Andrew reciprocated by being sweet and adorable.

David spent the rest of his time napping and reading The Economist magazine and Woman Warrior by Maxine Hong Kingston, our family book group selection. He did live long enough for the discussion, but didn't talk much or maybe not at all; because of his terrible throat pain he avoided talking.

And so we quietly prepared for the inevitable.

8 August 2017

Jim and I are at Zion’s Camp in Raymond, New Hampshire. Originally owned by the Boy Scouts, our church bought it about 15 years ago and converted it into a regional Young Women’s Camp. With a waterfront on the shores of Lake Onway (having spent many years as a Girls’ Camp waterfront director, I appreciate a well-appointed boathouse and swimming area), a large dining room with a commercial-grade kitchen, both rustic and electrified cabins, an archery range with girl-size bows, and a rifle range with girl-sized rifles, it’s much different from my Girls’ Camp experience in Sharon, Vermont, thirty years ago, where we camped in tents, cooked over fires, and did crafts beneath large blue tarps in the rain.

I haven’t been camping in years, and it is bringing back fond memories of hiking in the woods, roasting marshmallows over a campfire, and swimming in lakes or the ocean.

As I walk through the woods and look down at my old sneakers, a vivid memory of my old hiking boots comes to mind.

On November 5, 1995, I went psychotically manic. I was extremely paranoid and agitated. My whole personality changed: Jim didn’t recognize me and asked some friends to take me to their house, away from our children. After some time in the local emergency room, I was transferred by ambulance to a locked psychiatric unit at Waltham Hospital (more on this in future posts).

By summer, I had weathered an intense bout of bipolar depression. R’els Young Women’s leader invited me along to help on a two-day canoeing trip down the Saco River in New Hampshire. I was thrilled.

We rented canoes in the White Mountains and paddled all day, setting up camp along the river in the evening. After supper, I walked into the woods alone. As I breathed the pine-fresh air, I watched my boots crunching the long, bronze pine needles in the dry, sandy soil. I smiled. I was back. Back from the dead, practically. Back in the land of the living, watching my brown hiking boots tramp among the pine tree roots.

Last Hospital Stay

Two years ago

Friday, July 24, 2015, David was admitted inpatient to Lunder 10 for belly pain. He was weak and thin: six feet tall and 135 pounds. Over the next eight days, I posted to my blog five times. Matt and I spent time with David in the hospital; Matt decided to postpone his return to Chicago; R’el called from NYC; Annie called from China. In the hospital, the doctors identified the source of the belly pain and with a simple, five-minute procedure the blockage was cleared. With the belly pain gone, David’s throat pain came back, full-force, so Matt and I slept in David’s hospital room overnight.

Meanwhile, Jim spent a few well-deserved days in Shelley and Blackfoot, Idaho, enjoying the fruits of a huge, two-year labor of love: the Alan and Mary Cannon Family Reunion. Alan and Mary Cannon were Jim’s mom’s parents. 168 people enjoyed the weekend, including our Sam and Savannah from California, Jim’s mom, aunts and uncles, and three generations of cousins.

Late July 2017

I’ve had much calmer emotional weather this week. Reading a few lines from Melissa Dalton-Bradford’s On Loss and Living Onward last week pulled me right back into the intense grief. But it didn’t last. I am in a much different place, a better place, than two years ago. The intense, double-over-in-pain attacks haven't happened for a while. When I cry, I feel really sad, but the feeling dissipates.

Re-reading the late July blog posts from two years ago is painful. So many hopes that died. For example, in the hospital, David had a clear, juice-like version of the protein drink Ensure. Desperately wanting him to get nourishment, we ordered a case of it online. By the time it arrived, the window of opportunity had closed: he never took a sip.

Today I walked 14 miles on the Minuteman Bike Path with my friend Susanne. The sky was blue and the trees lining the path the mature green of early August. In 25 days I’m going to walk the Mesa Falls Half Marathon in the Caribou-Targhee National Forest near Ashton, Idaho, not far from Yellowstone.There’s a coupon for a free huckleberry milkshake waiting for me at the finish line.

Mucositis

Two years ago

Another first: on July 21, 2015, David doesn’t walk into Cox Clinic; I park at the Fruit St. Garage and wheel him in on a borrowed wheelchair. (Thank you, Deb Butler!) He doesn’t bring his laptop, just the most recent issue of The Economist. He hasn’t eaten in several days (a ‘last time’ we didn’t notice: his last meal), just sips of warm milk and honey water. All day long he coughs about every 10 minutes and his throat pain is 8 out of 10. Dr. Fathi thinks the leukemia is causing the painful inflammation.

Second Half of July 2017

I spent some time with my old blogs this week, preparing this post. Two years ago, David had less than 3 weeks to live. We lived day-to-day, not knowing when he would die, how he would die, where he would die. Dr. Fathi warned me that final-stage leukemia could cause a patient to bleed to death. Would that happen as I drove him home from MGH on Storrow Drive? Would Annie make it home from Beijing before David died?

It’s painful to sort through the blog posts of the final three weeks. I weep, overcome by acute pain, trying to process those final days.

Yesterday I woke up to rain falling outside my bedroom window. Usually this is the hottest week of the summer, but the temperature was only 59 degrees. I decided to read the ‘living onward’ chapters in Melissa Dalton-Bradford’s book On Loss and Living Onward. Now that David’s death is almost two years ago, I thought I was ready to re-read her thoughts on the next phase. But as I glanced at a bookmarked page, comparing grief to the feeling of physical drowning, it all came rushing back, the wrenchingly intense sorrow. I turned to Jim and cried in his arms.

In my journal last November I asked myself, “what is the balance between acknowledging, accepting, and fully experiencing strong emotion and moving on? Is misery always self-imposed?” At this point, I’m living onward, functioning well, but right now, July 2017, the grief is close to the surface. I want to feel, want to acknowledge the loss, experience the grief, not pretend it’s not there. I've lost my son. That's not going away.

Three Julys

Two years ago

We continue to live day-to-day. David has severe throat pain and can't eat or drink anything but warm honey water, getting weaker daily.

Rockport 2017

Jim and I spent two days in Rockport on Cape Ann, (the other Cape), at a charming AirBNB. I had a ‘German Shepherd' hot dog at Top Dog (befitting the Hot Dog Queen of the East) and in the evening we heard David Deveau  in a piano trio concert.
Saturday we stopped in Gloucester for lunch at the Blackburn building, now housing the restaurant Halibut Point. Howard Blackburn was a Nova Scotian fisherman whose rowboat was separated from the main fishing vessel; he bailed and rowed for five days in the frigid open sea and survived by letting his fingers freeze in a curled position so he could keep rowing. Although he lost all his fingers and parts of both thumbs, years later he sailed solo across the Atlantic, twice (two times), setting time records.

Like the underground Lost River in Indiana, I can feel a quiet current of grief  beneath my day-to-day enjoyments. The memories of Julys past: 2014 with a cautiously tentative hope as we inched toward the 100-day mark after the stem cell transplant, 2015 as David got weaker and stopped eating, and 2016 with the anticipation of the first anniversary of his death.

Now, when I plan to work on my blog, the weight of those Julys make it difficult to start. So far I’ve been able to keep my pledge to blog every week. I appreciate you reading it.

"Our Look Over the Brink"

Two years ago

July 2nd, David woke at 7:00 a.m. coughing heavily, consistently bringing up small amounts of blood. When our friend who lives on the third floor went downstairs on her way to work, David asked her to get him help. She came up and knocked on our bedroom door. Jim went to talk with David, who was waiting for an ambulance. Jim rode with David to Mass General. David’s sense of humor shone through: when the paramedics transferred him to the emergency department hospital bed, he said, “The hospital certainly has nicer beds than you do.”
He had nearly constant coughing, with blood, then got an hour of relief. When the coughing started again, there was more blood than before. An ENT (ear, nose, and throat) doctor came and probed with a camera via his nostrils. The ENT doctor’s best guess became that the blood was coming from his lungs and was related to the two-month-old pneumonia. The next diagnostic step would be a bronchoscopy, with sedation and intubation to maintain the airway, hoping to locate the source of the bleeding.
About this time, Dr. Fathi, David’s main oncologist, came by. He gently suggested to Jim and David that a bronchoscopy was a possibly irreversible step toward being permanently intubated and in the intensive care unit until the end of life. David vetoed the bronchoscopy.
With the decision not to do the bronchoscopy, , David was allowed for the first time all day to drink. He said over and over how good the ginger ale tasted. Then he fell into a restful sleep sitting up in his hospital bed.

Later that afternoon, David was transferred to Room 2004 of Phillips House: MGH’s deluxe hospital accomodations, since Lunder 10, the leukemia unit, was full. Phillips feels like luxury condominiums, with beautiful dark woodwork and high-end wooden doors. Each tastefully appointed private room includes a flat-screen satellite TV, and they serve specially prepared meals. David’s room had a glorious view of Beacon Hill and downtown Boston.

Jim emailed our kids, with the subject line “Our Look over the Brink.” He chronicled David’s day: the end of David’s life felt very near. His pneumonia couldn’t be cured; he had internal bleeding; and the leukemia was barely being kept in check by increasingly high doses of hydroxyurea. He was also steadily losing weight.

From the start of his illness, 15 months earlier, David didn’t want to talk about death, pain, his feelings, or his wishes for his end-of-life. However, in the hospital, he talked to Jim about his funeral, saying that he wanted nobody to feel pressure to travel long distances for it. He said he was glad that his younger sister Annie had gone to China to study that summer and that he didn’t think she should come back for his funeral. He wasn't in denial; he had thought carefully about these things.

July 4, 2017

On the fourth of July this year, the founder of a RSS service (which compiles summaries of blogs) commented on my blog that his reviewers had named my blog one of the “top 50 leukemia blogs.” I googled the service: ‘Is this legit?’ Although I found a favorable PCmag review, I also found a Better Business Bureau rating of ‘F’ and numerous complaints about hijacking email contact lists and spamming invitations to join the service at $24 a year.
I clicked through and found my blog (which was truly listed as #10), but since I couldn’t read it without providing my email address, that's as far as I went: I’m not taking any chances. So, just so you know, according to one (perhaps shady) RSS website, I’m #10!

Continuing to browse the web, I googled Leukemia blogs. Mine did not come up. But the search brought back memories of David’s illness, with websites describing the types of leukemia, survival rates, and answering questions like, ‘What’s it like to have leukemia?’, ‘What do you die of?’ and describing‘What happens immediately after death.’ These aren’t pressing questions any more. I just wish the answers had been different.

Step Three

Two Years Ago

        On July 2nd, 2015, I read step 3 in the LDS version of the 12 steps:

“Decide to turn our will and our lives over to the care of God the Eternal Father, and His Son, Jesus Christ.”

Then I wrote in my journal:

I need to stop being “consumed with feelings of fear, discouragement, and despair.” It's going to be hard.


July 4th, 2017

Jim and I took a whirlwind trip, starting with a church youth conference in Palmyra, NY (site of the founding of the LDS church) on Thursday, a six-hour drive to NYC Friday afternoon, the Mormon Arts Center Festival at Riverside Church Friday evening and Saturday, a delightful supper at Kitchenette Uptown with our NYC kids and grandkids, and ending with the 4-hour drive home Saturday night.

I thoroughly enjoyed the trip and am thoroughly enjoying being home.

Last night, July 3rd, our evening walk turned into watching the excellent and entertaining town fireworks (always scheduled early so as not to conflict with the big Boston Pops concert and fireworks on the 4th). Afterwards we took the long way home to avoid the throngs on the sidewalks of Worthen Road.

July 2nd, I went with Jim to church at the Kendall Square stake center. While he attended the Spanish-speaking congregation, I went to the English-speaking Cambridge 2nd ward, since I only understand about 5% (generous estimate) of Spanish-language meetings. It was Fast and Testimony Meeting, when anyone in the congregation can stand at the pulpit and speak briefly. I spoke of manic depression and David’s illness and death. Afterwards, a young man approached me to say that he remembered David. He and another young man were in the University Ward with David, back in 2010. It was heart-warming to hear their memories of David. Most of their cohort have finished their schooling and moved away years ago. Even in our home ward, there are few left who ever knew David before he was a leukemia patient.

As I considered this, I emailed Peter’s wife, Xiomara, asking when she met David. She sent a sweet email, listing the many times she had been with David over the years. The first time was about eight or nine years ago, at R'els Brooklyn apartment. David had returned from his mission and he and Jim and I had driven down for a visit. Xiomara happened to visit R'el that same day.

        She has a very good memory; I appreciate it.

House of Mourning

Two years ago

     For Christmas R'el gave me a long weekend in New York City, where she lives. I bought a roundtrip ticket on a double-decker Megabus, reserving the top front seat, for $26. I spent six days in Manhattan with R'el; my sister Maggie flew in from southern California.

     We got half-price tickets to the Off-Broadway show STOMP after we didn’t win the ticket lottery for Wicked and headed downtown. Before the show we had hot dogs and tropical-fruit drinks at the Papaya King. (Maggie is the Hot Dog Queen of the West; I’m the Hot Dog Queen of the East. We prefer hot dogs to steak.)

     I clocked over 18,000 steps (6 miles and more) on each of three different days. The morning of Maggie’s return flight, she and I walked to Randall’s Island and to the top of the pedestrian bridge alongside I-278 that Matt had told us about, enjoying great views of the NYC skyline to the southwest and Long Island to the northeast.

Solstice 2017

I drove to New Jersey and New York, a circuit I used to do monthly when my dad was alive and before David got sick. Saw my brother Mike, who’s severely intellectually and physically disabled, and spent time with Peter, Xiomara, and grandkids Andrew and Victoria. They live 4 blocks from a great playground that has a big concrete sprinkler area for running around and getting wet. So, Wednesday I played Oma (German for Gramma) and bought the kids squirt guns and water sandals. Then we took the bus to the Bronx Zoo. Walking home from the bus stop, a cheery bike bell rang: it was Peter, coming home from work. When he heard about the shopping expedition he remarked, “I guess it’s true what they say about grandparents.” Yes, I was never a big spender with my own children. One of the perks of being an Oma: I don’t have to worry about feeding eight people and sending six of them to college.

On the drive home, I listened to a Freakonomics podcast. When that ended, I told the phone to open a podcast, and it randomly selected a Moth Radio Hour piece I had listened to previously and saved. The House of Mourning , is a true story, experienced and told by Kate Braestrup, a game warden chaplain in Maine. It’s about family members wanting to see and touch the dead bodies of their loved ones recovered after drownings or fatal accidents in the wilds of Maine. It’s all about the desire we have to tend to the bodies of our loved ones, as a final physical act of love. I started to sob, right there on I-84 north of Hartford, blinking to keep my eyes clear enough to see the road. We live onward, but that memory of the perspiration slowly evaporating off the scalp remains, and will always remain, with us.

Music and Tears

Two years ago

I attended our Arlington Ward Spring Sing, an annual tradition when the ward choir, small groups, and soloists come together and present an evening of light, entertaining music. Nearly every year since we moved into the ward in 1992 I’ve sung in the choir, but when David got sick I took a leave-of-absence. In March of 2015 I was in Bethesda full-time. When I got back home, I cried every time I tried to sing a  hymn, so I didn't rejoin choir.

At the Spring Sing, in 2015, I made the mistake of sitting in the front row of the chapel. I quietly wept through the entire program. Afterwards, I apologized to my friend and fellow alto, Kimberly. She said she just wished she could do something for me to ease the pain.

June 2017

I came back to the choir last fall. I’ve had a few tearful moments, when a lyric or a harmony would tug at my heart, but mostly I’ve just been normal. Two weeks ago, I agreed to be the chorister at Sacrament Meeting, standing in front of the congregation, directing the hymns. One or two catches of the throat, but mostly relaxed and confident, glad to share my talents again.

Gardening and Hand Bells

Two years ago

June 9, I drove David to Jamaica Plain campus of the Veterans Administration Healthcare System, about a 40-minute drive. I didn't know why we had to go into Boston; there’s a VA hospital 10 minutes away, in Bedford. But I braved Boston traffic, parked in the VA garage, and we waited patiently in a dark, drab corridor on the third floor of a large medical office building. When we finally went into the social worker, she also couldn’t understand why we were there; the excursion was a complete waste of time. At least the parking was free.

On June 11th, the blood tests showed that in just 3 days the percentage leukemic blasts in David’s bloodstream had risen from 79% to 89% and the white blood cell count had more than doubled, manifesting in his low energy level. We had a frank discussion with Dr. Fathi and a conversation with a hospital social worker about hospice.

I re-read Being Mortal: Medicine and What Matters in the End by Atul Gawande, an articulate and thoughtful Boston-based surgeon who discusses how current American medicine fails to realistically deal with end-of-life issues. I went into this new phase with eyes wide open, or so I thought. How does one prepare for the unimaginable.

Early June 2017

I opened the online newsletter of TCF (The Compassionate Friends), the club no one wants to join. Unexpectedly, I read his name, “David Johnston”: the newsletter had a list of August death anniversaries. As evening fell, I sat at my desk, listening to hand bell Youtube videos, writing and weeping in the gentle glow of my laptop.

Two years ago I did no gardening: I was paranoid about microorganisms in the soil. Last year I didn't have the ambition. I'm glad I didn't: I'm often inconsistent with watering and with the drought, any new plants would have shriveled and died. As it was, I almost lost my perennial rhubarb from my neglect. When I finally looked at them in August, they were languishing and limp. This year, after debating all spring, I bought tomatoes and basil and petunias. But it was cold and rainy while we were in Charleston; they hardly grew. My rhubarb, however, is glorious. I bottled 7 pints of cranberry rhubarb jam.

Another glorious thing in my life right now is hand bells. I mentioned this in February: a new friend of mine owns his grandmother’s hand bell set. She, Margaret Shurcliff, brought English hand bells to America in 1902. At this point, our intrepid little hand bell choir is really just messing about. That's a quote from a favorite book of mine, The Wind in the Willows: Rat asserts to Mole, "Believe me, my young friend, there is nothing — absolutely nothing — half so much worth doing as simply messing about in boats." I feel the same way about hand bells. The feeling of power, flicking my wrist and producing a huge ringing sound: there is nothing like it.

If you didn't watch it in February, check out Eui Gon Kim's solo. And Kevin Mazimas Ko, who plays six bells at once!

Start with Spoleto, end at a Motel 6

Two years ago

June 2nd, 2014, our youngest, Sam, and Savannah Eccles got married in the LDS temple in Bountiful, Utah. Back in Massachusetts, David was recovering from pneumonia in the hospital, but Matt took the train from Chicago to Boston and brought David home. Annie flew to Utah from Beijing; she was on a summer study abroad in Tianjin, China. The wedding was lovely and some of us spent the time between the ceremony and the wedding dinner at Nielsen's Frozen Custard stand.

When we returned home June 3rd, David was in a good mood, though weakened by the pneumonia. He was chagrined when Matt beat him at the board game “Ticket to Ride”. His throat pain and nausea were gone: probably they were caused by the clinical trial drugs.

Spoleto USA 2017

For the second year Jim and I drove down to Charleston, South Carolina, to attend concerts at the Spoleto USA Music Festival and again we stayed with Jim’s sister Mary and her husband John. Mary showed us some of the impressive memoirs she has helped produce. We visited John’s lab and observed barnacle larvae under a microscope. They are crustaceans; I didn’t know that. John is the world’s expert on sea turtle barnacles and always cheerfully answers any questions we have about the natural world in all its complexity.

We immersed ourselves in five days of 17-day festival: Mahler’s 4th Symphony, Tschaikovsky’s opera, Eugene Onegin, string quartets and piano trios. The most unusual show was "While I Have the Floor", a tap dancing memoir by Ayodele Casel. Like her, Jim and I love Fred Astaire and Ginger Rogers; like her, we’ve watched Top Hat and Swing Time dozens of times. Here's a sample of her thought-provoking show.

For our 38th anniversary, we stayed overnight at a Motel 6 in Roanoke Rapids, North Carolina, on our drive back home, reminiscent of the years when staying at a cheap motel was a big step up from camping or sleeping on relatives’ floors.

Memorial Day 2015 and 2017

Two Years Ago

On Memorial Day, May 25, David returned to Lunder 10. He hadn’t eaten anything for several days and was dehydrated and terribly nauseated. He had no appetite and severe pain in his throat. Dana, our favorite Lunder nurse, who works weekends and holidays, started IV saline and some Ativan, which is very effective for nausea as well as anxiety and insomnia. (I took it briefly during and after my psychiatric hospitalization in 1995). The Ativan knocked him out minutes after it started flowing into his vein.

The infusion room was full, so Dana had set us up in the patient and visitor lounge and taped a "Lounge Closed" sign on the door. It reminded me of May 2014, late in our time at Walter Reed. One night, after David had been there about two months, he couldn’t sleep. We walked down the hall to a lounge and he lay down on the couch. “This feels so good!” he said. The sweet nurse on duty let us stay, even though it was against procedure to have a leukemia patient with a minimal immune system sleep in the lounge. Such a simple pleasure, to get out of bed and nap on a green vinyl couch.

As Dana worked, she said, “I’m trying to keep him out of the emergency department.” She succeeded. Later that day he moved into room 1092.

The next morning, Dr. Fathi discontinued the MEK 162/BYL 719 clinical trial. The drugs weren't lowering the white blood cell count and were probably causing the throat pain, nausea, and lack of appetite. Another failed attempt.

Also on Tuesday, they took a chest x-ray to investigate his hoarse cough and discovered pneumonia. Later, a CT scan showed a large consolidation (not a good thing) in the upper right lung and little dots scattered throughout the lungs.

The previous Friday, R’el, Peter, Xiomara, and Andrew had driven up from NYC for the holiday weekend. Two-year-old Andrew had decided to enjoy his Uncle David’s company, even when his mother wasn’t in the room.

On Saturday, we watched a Captain America movie,Winter Soldier. R’el synchronized the start of the movie with Matt in Chicago and at our house R’el, Peter, and David sat at their laptops (as did Matt in Chicago) and messaged commentary as the movie progressed. David commented afterwards that he missed a bit of the action while typing and reading comments.

Memorial Day 2017

For the second year in a row, Jim and I drove to Charleston, South Carolina, to stay with Jim’s sister Mary and family and attend performances at Spoleto USA. Today we saw Geoff Nuttall and friends in a chamber music concert, including the Mendelssohn Piano Trio in C minor, opus 66.

I wrote about transformative music back in November. It’s an experience I have over and over again. The piano trio players performed with energy and passion. I’m grateful to share the earth with such talented, dedicated human beings.

Also, for the second year in a row, we didn’t visit David’s grave for Memorial Day: we drove to Charleston instead. I was at the cemetery a few weeks ago and straightened the flags flanking his headstone. The grass over his grave is lush and green; my lawn should look so good.

Happy Memorial Day

Right after David was buried, I thought I’d visit the cemetery once a week. It felt disloyal not to. But now I don’t feel the need to go so often, though with the warmer weather, I’ll probably make the 2 ¼ mile walk on the bike path more often.