Memorial Day 2019

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.

Concerts and trips

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.

Dreaming of David

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.

Restroom Door

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?