In 2014 our 26-year-old son, David, was diagnosed with leukemia and my dormant blog became a chronicle of our experience. He died August 12, 2015. Now I focus my blog on my post-leukemia life, manic depression (bipolar), and other musings.
Jim and I went on a Pioneer Trek with about 70 of the youth of our church. It was a reenactment of journeys nearly three thousand Latter-day Saints took across Iowa, Nebraska, and Wyoming to the Salt Lake Valley, from the years 1856 to 1860. They packed their belongings in a handcart and walked over a thousand miles. Our teenagers were organized into 7 ‘families,’ each with adult leaders as Ma and Pa. Over three days we trekked 15 miles through the woods of New Hampshire: not quite the Great Plains, but challenging.
I often walk 4-5 miles in a day, so I was actually disappointed that it was only 15 miles total: I had misunderstood it to be 15 miles a day. I did worry about sleeping on the ground: it’s been years. But we bought backpacking air mattresses, which are very lightweight and inflate in 15 breaths.
It was a fun date for Jim and me. As the company's grandma, I wasn't responsible for anything. Except for a slight rain Saturday morning, the weather was great and the rail-trail easy to follow.
Back home on Sunday, two of the teenagers reported to our congregation. One had been quite skeptical of the plan. He named it ‘cruel inefficiency’ to pull a loaded oaken handcart over dirt and rocky trails for three days. But in the end he was glad he’d done it.
For both of them, and for me, it heightened our appreciation of our pioneers. Everyone who has gone before is a pioneer, not only my great-grandfather James Farrell, who walked to western Nebraska and built a sod house, or my great-grandparents Bruesch, who came as children to Wisconsin from Prussia and homesteaded a wheat farm in Highwood, Montana, but my grandparents and my parents. Every generation has its own challenges and forges the way for the rising generation.
I’m grateful to have shared the trek experience with Jim and new-found friends. I’m grateful to live in beautiful New England. And I’m grateful for my parents, grandparents, and all pioneers, for the sacrifices they made to give me a better life.
A musical memorial service was held at Lexington High School for Janet Haas, an exemplary music teacher and accomplished musician, who collapsed in school in early December and was rushed to the hospital. She died a month later of a brain tumor. She was born in 1960 and was planning to retire in June. As one colleague said, “This should have been her retirement celebration.”
The service included a short video and beautiful music, played by her music students, from fourth graders through high schoolers, alumni, and colleagues. It including “Nimrod,” from the Enigma Variations by Edward Elgar, “Over the Rainbow,” played by a string orchestra of elementary students, and Samuel Barber’s Adagio for Strings. The Adagio is a great favorite of mine. It accompanies the David Whyte poem, "Well of Grief" that I wrote about 17 months after David died.
I hardly knew Janet Haas. An avid garage sale customer, I once found a violin for $25. Senior year, our daughter R’el, who played the flute and sang, decided to take it up and joined Mrs. Haas’ intermediate orchestra. To me she seemed a stern taskmaster: at one concert she announced that they would not be playing one of the pieces: it wasn’t ready.
I was pleased to hear of her gentler side, the extra attention she gave students, her interest in early music, figure skating, and gardening. The video showed a home movie clip of her smiling and patiently teaching a little boy how to move on figure skates.
According to Lexington Wicked Local, when Mrs. Haas began teaching in Lexington the high school orchestra had 17 string students. Thirty-one years later there are nearly 200 string players in three orchestras.
The announcement in Lexington Wicked Local reads like the obituary of Doc Graham (Field of Dreams), full of love and admiration for a life well lived:
Haas is remembered not only as a brilliant musician, teacher and colleague but also as a woman of the highest professional, personal, and musical integrity. She deeply wanted her students to experience the fullest passion for music. When she saw a need among her students or in a program she quietly rose to address that need. If a student wanted to learn to play bass at a school that was not in her schedule she would find a way to fit them in. She was a living example to her students of commitment, honesty and perseverance. Praise from Ms. Haas was a precious gift that meant her students had done something special and important.
After the service, we spoke to some of the other music teachers. Mr. Leonard, the music director who worked with us when we donated some of David's insurance money to buy new choral risers, pointed out John, with a bushy red beard, clearing the stage. He said that John was very careful handling the risers and made sure the brass plaques with David's name on them always faced out. Jim and I went up on stage to thank John for his care. We shook hands. It was a sweet moment.
David played the clarinet. He sat near the back of the section, stage right. I can see him intently blowing into the clarinet, or chuckling with another student. He graduated in 2006, thirteen years ago. It was a bittersweet afternoon.
Peter and Xiomara, with 6-year-old Andrew and nearly-4-year-old Victoria, visited last weekend. On Saturday we went to Bedford Farms, a local ice cream stand. Our congregation, the Arlington Ward, always frequents Kimball Farm in Carlisle, but I’ve heard good things about Bedford Farms and it is nearly 4 miles closer to our house. (The ice cream was delicious. I had a blueberry swirl. Jim had outstanding ginger.)
On the way to ice cream, we passed the cemetery, and Jim turned in. Andrew wanted to know what it was and I explained it in simple terms.
We drove to David's grave and I knelt at the stone with Victoria and Andrew. As I read aloud:
I suddenly realized that Victoria would recognize it as her birthday. Victoria was born at 11:40 p.m., 40 minutes after David died. She will always share that date with him. I wasn't prepared to face that fact with her on the way to ice cream. But for Victoria it was simply a curiosity, that her birthday was on a stone in the grassy ground. Death isn’t tinged with sadness, horror, and longing for her. It’s just a fact: two things happened on the same date, both of them theoretical and mysterious to my three-year-old granddaughter.
Two months after David died, I wrote:
I’m sitting on the soft brown couch in Riverdale (the Bronx), listening to the Mormon Tabernacle Choir, little Victoria kicking her legs and waving her arms. Andrew is munching on Lucky Charms in between kissing his baby sister.
Victoria was born 40 minutes after David died. She’s now two months old. It will always be easy to remember the date. Will I remember it more for the death or the life? The life I think. Every year Victoria will change; she’ll have her first birthday, her fifth, her sixteenth. David’s date will be static, slowly fading into the past, but never forgotten.
And now, nearly four years on, I start having the answer to the question I posed. Both events will always be significant; any mention of that date will immediately bring to mind two events. And, yes, Victoria will change constantly and her birthday will have new meaning each year as she grows up. But we won't forget David. New experiences surround us every day, but the fact of his life will never fade. We continue to have six children.
October 12, 2019 will be the fifth year that we host the Massachusetts General Hospital (MGH) bloodmobile for a blood drive in memory of David, who received many transfusions from MGH in the 15 month course of his treatment there. That has become, by design, the focus of our remembrance of David: the month of his birthday. And on August 12, 2019, Jim and I will be in the Bronx, with a homemade strawberry birthday cake for Victoria.
Spoleto: chamber music, Shakespeare’s Pericles, a Cuban big band, and an all-male dance company of Algerian, Israeli, and Palestinian street dancers. We drove the nearly 1000 miles down to Charleston in one day, stopping only for gas and a short supper. We took a leisurely four days to drive home, stopping for lunch with good friends in Richmond, and supper and an overnight stay at my brother Steve’s in Bethesda. Friday and Saturday we were at Haverford College, Bryn Mawr College (a mile away), Philly, and then drove to Manhattan for a vegan meal with R'el. We spent Saturday evening and Sunday morning with Peter and his family, then headed home.
We stopped at Haverford College for David’s fifth college reunion. At 23, he was the oldest freshman at Haverford in 2010. We know this because he told us, with a chuckle, that the dean, at a meeting of the whole freshman class, had listed interesting facts about the incoming class (how many international students, etc.). The youngest student was 16, the oldest 23. He studied Chinese and Spanish and biology and chemistry. Then he joined the Army in 2011, became a medic, and got leukemia in 2014, a few months before his Haverford class graduated.
Last year, at my Bryn Mawr College 40th reunion, Jim conceived a plan of attending David’s 5th reunion and having a short memorial for him. Jon Schweitzer-Lamme, chair of the Haverford Class of 2014 reunion committee, knew David, it turned out, and was happy to organize it.
Stacie Giles, my dear friend in Richmond, and her husband, Frank, came too. She was going to her own 40th reunion at Bryn Mawr. Stacie's short-story murder mystery was recently published in an anthology, Deadly Southern Charm.
We arrived Friday evening and went out to dinner with Natalie, a good friend of David’s at Haverford. They studied Chinese and Spanish together and annoyed/amused their friends by speaking Chinspanglish. David was a very private person and I don’t recall him ever talking about his friends. We first knew of Natalie when she walked up our driveway to attend the visiting hours in our home before David’s funeral. She and David had emailed all through his illness and she followed my blog. It was a bold thing for her to come up from New York unannounced, but I was thrilled to learn of her friendship and connection to David and immediately invited her to sit with our family at the funeral.
We spent dinner talking about David and about her present life. Then we drove to Haverford and sat under a big reunion tent between Founders Hall and the old Ryan gym, where I used to practice fencing with the Haverford team. (Bryn Mawr didn’t offer fencing. I had learned it at the YMCA in high school. Since Haverford was all-men at the time, I couldn’t compete with the team at meets, but occasionally got to compete unofficially with women from other colleges.)
The memorial was simple and intimate. Nine classmates stood in a circle near a young tree on Founders Green and talked about David. One woman remembered that David wouldn’t laugh at her jokes. They remembered being surprised that he was the famous 23-year-old: he didn't look that old.
After that sweet meeting, we took a short tour of Barclay first floor. David lived in room 102, the corner dorm room facing Founders Hall. Natalie lived on the same floor. I have fond memories of Barclay: some of my favorite Class of '78 Haverfordians lived in Barclay during our freshman year.
I wasn’t sure how the memorial would go, and how I’d feel about it. Would it be awkward, being the older, bereaved parents of a young man who had only attended Haverford one year? Would anyone but Natalie and Jon recognize David’s name? But it was a sweet experience. Bittersweet, to see these charming, promising young adults living interesting lives and returning to see college friends and roam the campus.
This week, all of eastern Massachusetts is resplendent with pink-lavender rhododendron shrubs. By far the most abundant color of rhododendrons right now, it blooms before the whites, reds, pinks, and oranges. The blessing of a cool (no, cold), rainy spring is that the flowering shrubs bloom for extended periods. The rhododendrons are a towering mass of bouquets of blossoms. Some are fifteen feet tall. It's a pleasure to drive around and enjoy them.
For the fourth year in a row, Jim and I are visiting his sister, Mary, and her husband, John, in Charleston, SC while attending Spoleto events. It’s a two-week-long arts festival: classical music and jazz, dance and drama.
I remember the first year we came. We arrived Friday night. On Monday we attended a concert in downtown Charleston. There were sporadic showers and as we dodged puddles and orange traffic barrels marking broken pavement, I saw an American flag and suddenly realized it was Memorial Day. I hadn’t thought to decorate David’s grave: I felt terrible. I emailed a good friend, Ellen. She not only placed a flag at his grave, but took a sweet picture.
I don’t remember what happened the next year, but I know I didn’t decorate his grave. In 2018, after my request, Ellen helped us out again:
This year, I put it in my calendar. The evening before we left, Jim and I went to David’s grave and placed two flags. We discovered the cemetery staff had placed flags on all the graves, so he had three.
On Monday, another good friend, Amy, sent me a picture: she had placed white flowers and a flag on his grave, alongside ours.
Charleston has a bittersweet connection to David. During the Christmas holiday of 2013, we rented a van and drove with some of our kids to Charleston. David was stationed in Texas and flew to be with us. After our stay, Jim and I drove him to the airport. As he got out, Jim offered to sign the Family Letters book that Jim had written. Then David strode into the terminal. It was the last time we saw him healthy. Less than three months later we met him at Dulles Airport and drove him to Walter Reed National Military Medical Center (which I named WReNMiMiC.). Memorial Day weekend of 2014, David and I were flown to Hanscom Airport, then transported to Massachusetts General Hospital (MGH). We had such high hopes that day. He was ‘in remission’ and Sam was a 10-of-10-match stem-cell donor. David would have a stem cell transplant in mid-June.
Memorial Day 2015 (from my blog):
David returned to Lunder Monday morning, Memorial Day. He hadn’t eaten anything for several days, was dehydrated and terribly nauseated. He had no appetite and severe pain in his throat. Dana, our favorite Lunder 10 nurse, who works weekends and holidays, started IV saline and some Ativan, which is very effective for nausea, (as well as anxiety and insomnia). The Ativan got rid of the nausea and knocked him out minutes after it started flowing into his vein.
Ours was an unscheduled visit, and the infusion room was full. Dana put us in the patient and visitor lounge and taped a sign on the door, ‘Lounge Closed’. Last May, late in our time at Walter Reed, there was a night when David 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 patient sleep in the lounge. Such a simple pleasure, to get out of bed and nap on a couch.
In the Lunder lounge, David was quite comfortable. Dana said, as she worked, “I’m trying to keep him out of the emergency department.” She succeeded. He moved into room 1092 Monday afternoon.
David hadn’t taken his clinical trial drugs Monday morning. On Tuesday I arrived at Lunder 10 around 9 a.m., to deliver the refrigerated BYL719 study drug. That was unnecessary: Dr. Fathi stopped the MEK 162/BYL 719 clinical trial. The drugs were not lowering the white blood cell count and were probably causing the throat pain, nausea, and lack of appetite. It’s disappointing.
Tuesday they took a chest x-ray to investigate his hoarse cough and discovered pneumonia. Later in the day they did a CT scan, which showed a large consolidation (not a good thing) in the upper right lung and little dots scattered throughout the lungs. Since a lung infection could be TB (tuberculosis), we all have to wear heavy-duty masks, which are hot and bothersome. But I certainly don’t want to either contract or pass along TB (or any infectious disease). It’s quite unlikely he has TB, but they must take precautions.
At 5:30 p.m. this evening David was sleeping soundly. He was in good spirits yesterday, and sounded chipper on the phone this morning, but now he’s conked out. Yesterday afternoon he spiked a fever of 104°. When Jim arrived to visit, the nurses were busy applying ice packs in an effort to lower his temperature.
R’el, Peter, Xiomara, and Andrew drove up from NYC Friday night for the holiday weekend. David enjoyed playing with Andrew and made some videos on his iPod. Happily, Andrew has decided to enjoy his Uncle David’s company, even when his mother isn’t in the room.
Saturday night we watched a Captain America movie,Winter Soldier. R’el synchronized the start of the movie with Matt in Chicago. At our house R’el, Peter, and David sat at their laptops (as did Matt in Chicago) and messaged commentary as the movie progressed. I was content to just watch the movie. David did comment afterwards that he missed a bit of the action while typing and reading comments.
The goal for now is to get David strong enough to come back home, one day at a time.
And now, in 2019, we’ve spent four Memorial Days without him.
Jim and I went to a concert of Haydn music a few days ago. Jim remarked that one of the violinist looked a lot like Andy H., the father of one of David’s elementary-school friends. I agreed. Later I looked at the program and found that it was indeed Andy. I was anxious to go up and talk to him after the concert. He didn’t recognize me at first, but remembered that David and his son were friends. I asked about his son and he then asked about David. “David died of leukemia four years ago.” He looked shocked and said, “I’m sorry. I didn't know.” I had wanted to let him know, but then it felt awkward, so I changed the subject.
The next morning I woke up feeling anxious. As I replayed the conversation, I worryied that Andy thought me callous for changing the subject so fast. But really, my unsettling feeling was from my grief. Seeing Andy brought out my loss and what more could I say to Andy?
I’m glad I went up to talk to him. I hunger for connections to David’s life: there are very few.
I took a long walk the next day and realized that compounding my grief was the fact that a few days before I had taken my first solo trip to New York since my brother Mike died. I had stressed about how I was going to schedule it now that it didn’t include a trip to the nursing home in New Jersey. It wasn’t complicated, but it seemed very complicated. Three days after I returned, I realized that Mike's death, the fact that he was dead, was affecting me, below my consciousness.
Last week the facilitator at Compassionate Friends, my bereaved parents support group, talked about why support is important as time goes on. Each stage is a new stage: one year after, four years after, ten years after. It’s always a new experience. When she said it, I didn’t think it applied to me, but after the experience with Andy and my New York trip, I see that it is true. My life is full of many wonderful things. But there’s a loss to recognize and deal with, a loss that doesn’t go away.
We heard that a friend of ours recently died of an inoperable brain tumor. She only lived about a month after her initial diagnosis. Another loss.
Last Thursday I dreamt of David. I don’t recall ever dreaming of him in the 3 ½ years since he died. In my dream, I was coming down the stairs. Our 1895 house has a charming feature: near the bottom of the stairwell is a landing in front of three windows. There the stairway splits into “Jack and Jill” stairs. Turn right and the Jill stairs take you to the kitchen, turn left and you go into the front room, our library. As I stood on the landing, facing the library, I saw a little boy, about six years old, in a pressed burgundy sports coat, sitting on the bottom step. I knew it was David. I stood silent, afraid that if I moved he would disappear. I kept looking at his back and wondering if he was about to disappear. From the kitchen, Jim called out: two of our adult children had entered the house. I wanted go see who had arrived: I wondered if it was the adult David, but I didn’t want to lose young David. I was frozen in place.
When I awoke, I wanted to cry out in pain. I hadn't experienced that intensity of pain for a long time: I'd forgotten what it felt like. Pain like that doesn't disappear: it's just somewhere below the surface.
At church on Sunday, I was walking along the foyer just outside the chapel door when I saw Joan, who is some years older than me, ask a young woman where the restroom was. "Sure, it's right over there," she cheerfully answered. She took a few steps and pointed, so that the restroom door was visible to Joan. As I approached, I smiled at Joan. She looked at me intently and said, “I know you.” "Yes," I said. “I know you. What’s your name?” "Mary." “What’s your last name?” "Johnston."
I was pleased she recognized me. She hasn’t for a long time, although we've been in the same congregation for 26 years. For most of those 26 years, she's known the layout of the church building. I watched her walk over and stand by the women’s room door, staring at the placard. I followed her. "Yes, that’s the women’s room. See, it says women. And the picture has a dress on." She still looked unsure, but finally opened the door and went in.
It must be terrifying to have so little concept of what used to be a familiar world. Imagine, standing in front of a restroom door, uncertain whether to go in. Having some vague dread of embarrassment, perhaps not even knowing why you are hesitating. I’ve walked into men’s rooms before, (more than once), realized my mistake with the sight of urinals and rushed out, hoping to get a safe distance from the door before anyone saw me. It’s deeply ingrained, the dread of being found out. What if I lost the ability to escape and avoid that embarrassment?
Last week I learned that Lois Earnshaw unexpectedly died on April 19. She stumbled and struck her head, but didn't seem seriously hurt. However, she gradually lost consciousness, was taken to the hospital, and died. She was 89 years old, but in good health, so it is quite a shock.
I first met Lois when we moved to New Hampshire; I was 28 years old. She had children about our age. She was talented and articulate and self-confident. A role model.
What is life for? To help each other through, for sure. To find worthwhile things to do. And we’re meant to enjoy our life, to appreciate the people and the beauty around us.
Four days ago, as I was driving into Lexington Center, I saw a hedge of brilliant purple azalea and then a tree with cascading white blossoms. A few days later, I passed under a row of flowering trees and remembered walking among the pink clouds of cherry blossoms in Washington the first spring that David was sick and in the hospital. It's a magical memory from a dark time. Since Patriots' Day, all around us, tree branches are tinged with many shades of delicate green. The trees haven't leafed out, but the promise is there. We don’t have the profusion of blooms southern cities like Washington, D.C. have, but the contrast between the winter bareness and the flowering shrubs and budding trees delights the heart.
I missed my blog deadline last week. The third Monday in April is a state holiday in Massachusetts and Maine, to commemorate the Battles of Lexington and Concord. Three-tenths of a mile from our house is the Lexington Battlegreen, where His Majesty’s troops meet the local militia of Lexington. Each year the battle is re-enacted. We open our acre yard for friends, and friends of friends, and anyone who has the least connection to us, for parking. One year we parked 60 cars, and no cars were blocked. This year the forecasted rain lowered our attendance: we parked only 30 cars and hosted about 100 people for breakfast.
Yesterday I walked into our guestroom and had a magical experience. The bed was so neatly made I thought I had stepped into a five-star hotel. The cotton comforter was as smooth as satin. Jim’s cousin was our guest Friday night. He’s a former Air Force pilot and it shows. I was touched by the care he took in the simple act of making the bed.
As I sit here writing, a “Christmas” cactus that decided to bloom for Easter gracefully bends towards my laptop screen. The blossoms are an improbably rich pink. The purple hyacinth I picked this morning perfume the kitchen.