Walk along the Charles

Last week I had a psychiatric consultation in Downtown Crossing, Boston. I felt happy as I left. The consult had taken about 40 minutes. Although I had plenty of tasks to accomplish at home, I decided to walk to the Charles/MGH stop of the Red Line. As is my wont, my walking ambitions grew as I walked; on my way across the Common, I decided to walk along the Charles River and cross the Mass Ave Bridge, heading for MIT; there’s a Red Line stop there.

That morning, I would have said I didn’t have time to walk. But many years ago, Jim advised a stressed-out client to paint his office. Change of pace. Taking charge of a small thing (though painting an office sounds daunting). So, walking toward home through Boston and Cambridge was my painting job. I calculated that I would arrive home about 6:30 p.m.: a four-hour walk, roughly a half-marathon. It was getting dark by 4:30, at about the time I got to the bike path, so I headed towards Mass Ave on Lake St. in Arlington. When my phone battery was down to 6%, I emailed Jim and turned off Runkeeper, my GPS app. Jim called me (4% battery life) just as I passed the Blue Ribbon BBQ restaurant, nine and a half miles into my walk. He suggested we meet there. Perfect timing.

The walk reminded me of a bittersweet experience walking along the Charles River when David was inpatient at Mass General (MGH). It was a lovely spring day and again I was relieving stress by taking charge with a long walk. As I walked along the Charles, I looked across at a playground area that had adult exercise stations. A young man, shirtless in the cool spring weather, was working out. I was both happy for his health and sad for David’s physical deterioration. I savored the hug my Army guy gave me when I saw him at Christmas time before he got sick. We were at a Christmas concert of R’els in Manchester, Connecticut, and he surprised us: walking into the church when we weren’t expecting him. He had his fatigues and Army boots on and his crewcut was a prominent feature of his bare head. Those strong arms and chest and back. I didn't realize how soon they would be gone.

Worldwide Candle Lighting

Join me, if you can, for The Compassionate Friends' annual Worldwide Candle Lighting, this Sunday, December 9th, at 7 p.m. your local time. Imagine the candlelight crossing the country and world in a 24-hour commemoration of all those who died too soon and are sorely missed. Leave a comment if you do it.

Compassionate Friends

I went to Bereaved Parents of Middlesex County tonight. It’s a part of The Compassionate Friends, a support group for parents, grandparents, and siblings of a child, grandchild, or sibling who has died.

I hadn’t been for a long time: nearly a year and a half. But I had an experience last week at our church’s wreathmaking party: the first much-anticipated holiday event of the season. There’s a program (this year it was Benjamin Britten’s A Ceremony of Carols complete with a harpist), and the  optional making of wreaths. (Mine hangs on my kitchen porch.) The congregation sings a few Christmas carols. I love Christmas, especially the music. But as the first chords of the organ sounded, I started to weep, holding myself so I wouldn’t shake with sobs. Slamming into an unforeseen brick wall.

A few days later I was visiting a friend in the hospital and told him of my experience. “There’s no expiration date on grief,” he wisely said.

So, tonight I went to Compassionate Friends. I actually went last night, but found one other mother standing outside the darkened church building. We had a good, healing conversation. She asked, “Does it get better?” I wish I had words for it: better is not quite it. But, yes, I can now feel happiness and even joy and can hear a helicopter without being overcome with gut-wrenching emotion.

We later found out the meeting had been changed to Tuesday. I had received an email about the change, but when I received it I wasn’t planning to go, so I'd forgot about it.

Each story is different: the commonality is the heartbreak and heartache. I had forgotten the closing tradition. We stand together, holding hands around the table and speak our child’s name, “Good night, David.” That is very powerful and catches me off-guard every time. I can barely speak his name. I realize that I’m not able to truly wish David good night. I’m crying right now, as I write this. It’s a lonely, desolate feeling.

It’s a comfort to meet together, in “the club no one wants to join.”

Chord Progression

On Sunday, at choir rehearsal, I was learning the alto part to “O Holy Night” for our Christmas program. Suddenly, my throat seized and tears welled in my eyes. I couldn’t sing.

I try not to be noticed when I cry. But my friend, Christy, noticed and whispered, “Are you okay?”

Afterwards, I told her, “Sometimes the music just hits me.”
“Isn’t that why we do it?”
“But it makes it impossible to sing.”

What are those harmonies? I took a music appreciation class in high school, taught by my beloved orchestra conductor, Mr. Ragno. He was a true mentor and friend to a group of us students. We would sit in his office for hours, talking  with him. He was genuine, compassionate, and took us seriously. But that was 45 years ago, and how much knowledge could he have poured into my brain in one semester?

I just googled 'Ragno Westfield NJ' and found his obituary. He died two years ago, at the age of 86. Jim and I met him on the sidewalks of Westfield back in the early 1980s. He was as gregarious and Italian as ever. I'm glad we saw him. I wish I could tell him that I still think about him. He's a real-life Mr. Holland.

Yesterday, my friend and piano teacher, Cami, helped me pick out the chords in "O Holy Night." E-flat major, c minor, g minor, f minor. Chord progression: I-vi-iii-ii. Intense. I feel pierced and vulnerable.

“Isn’t that why we do it?”

Goofing off!

I promise, next week I'll post!

On Vacation!

Thanks for checking in! We're in Provo, Utah, with Annie and Shawn. Saturday evening we'll attend the Johnston Extended Family Pre-Thanksgiving dinner in South Jordan. Four out of five years running!

On Being Mortal and Hallowe'en

Jim, Matt, Xiomara, and I attended the Good Shepherd Institute dinner, with Atul Gawande as the keynote speaker. His book, On Being Mortal, should be required reading for every American over the age of sixteen.

We heard about the dinner through the Good Shepherd Hospice newsletter. Our son, David, was a hospice patient with them for two weeks before he died. They took good care of him and of us. Their grief counselor helped us through the first year after his death: I still think about things she said.

When introductions were being made around the table, I mentioned David and our connection to Good Shepherd. I also said I had read On Being Mortal when David was sick. A woman remarked that I was very brave to read it in those conditions. But I was grateful for the insight Atul gave me. It strengthened my resolve to have David die at home.

Lori, a friend of mine, told me she hates Hallowe'en and the way it makes death terrifying. I agree to a point: I don't put up scary lawn decorations or dress like a ghoul. But I like the costumes and candy and the chance to meet young neighbor kids.

We live on a busy street at the edge of a commercial district and have rarely had more than two or three trick-or-treaters venture up our long driveway on Hallowe'en night. This year I got proactive: I created a living room in the front yard, setting up chairs and a table with a dark burgundy tablecloth and a stuffed fabric pumpkin and jack-o-lantern my mom made forty years ago. Jim brought out a floor lamp and I mulled 2 gallons of apple cider and dressed in the dirndl I just bought at a second-hand shop in Munich. We handed out full-sized candy: Snickers, Skittles, and Starbursts. (The latter two were MUCH more popular than the chocolate Snickers). About 40 kids visited: quite an increase over former years.

Jim just came home from church in Belmont. In the time it took to drive home he listened to WCRB play Albinoni's Adagio in G minor. A peaceful ending to a rainy autumnal evening.

Speeding Down Route Two

This morning I took three white plastic baskets into our walk-in closet to sort the laundry. I was in a hurry and didn’t want to take the time to pull the hamper out into the bedroom.

As I knelt to reach into the hamper, I suddenly remembered a scene in that closet nearly 23 years ago. On November 5, 1995, in the midst of a head lice infestation and after an autumn of riding high in what we would soon learn was a hypomanic episode, I turned my closet into a sanctuary. Details of that evening are disjointed, but I remember sitting on the floor in the closet together with Jim, who was cross-legged and leaning against the wall. I wanted to show him the perfect Christmas gifts I had bought that week. I now realize I was talking fast and not making any sense. At the time, I studied Jim’s face as I talked and reported to him, minute by minute, his changing thoughts. He later told me I was spot on with many of my observations. I could read every muscle of his face and caught every nuance.

I later learned that Jim was afraid to leave me alone with our six children, ages 4 to 14. He called a friend, Jo, to come and take me to her home. I was thrilled to go: a girls' night out.

At Jo’s house, I became agitated. I was convinced that evil men were conspiring to kidnap my oldest daughter. Don’t ask me how I ‘knew’ this; but I was entirely certain that she was in imminent danger. Jo and Bill had daughters, and I shifted to concern for their safety. Jo and Bill didn’t seem to be paying attention: I couldn’t convey to them the desperate situation we were in.

So, I walked across the room, yanked a framed picture off the wall, and smashed it on the floor. Sometime later, a doctor-friend, Greg, must have come by with his minivan: the next thing I remember is Jo and I sitting in the middle bench seat as Greg drove down Route 2. I imagine he was driving about 60 or so. I was obsessed with my paranoid thoughts and frustrated that no one was listening or taking me seriously.

This I remember quite clearly: I unbuckled my seat belt and reached for the door latch. “I can just get out here,” I said.

I can still feel Jo reaching over me to pull the seat belt back across me. “You don’t have to do that, Mary.” I was younger and stronger than Jo, but I acquiesced and stayed in the car.

Later that night I would be admitted into a locked psychiatric unit at Waltham Hospital, near Brandeis. And that’s another story.

Hope

Many Wednesday evenings I can be found at DBSA-Boston (Depression Bipolar Support Alliance); I often facilitate the newcomers group. I orient first-time visitors to our groups and our culture. I always share a five-minute version of my experience with manic depression. I want people to feel comfortable, to know that this is a place where experiences with mental illness can be discussed openly and support can be given and received.

Each group is different: there can be three newcomers or twenty, mostly women, or a more balanced mix. The ages range from eighteen to seventy-something. Usually a majority of the group members have a mood disorder, but sometimes about half are family members struggling with a loved one’s illness. For some an unexpected episode is recent and raw, others have dealt with their illness for years.

It’s a sacred experience, sharing our stories. The time I came closest to tears was when a young woman, perhaps twenty years old, looked at me with tears in her voice and deep pain in her eyes and asked, “Does it get better?” Her vulnerability caught me off guard. Distress and confusion permeated her whole being and I ached for her. I had my first psychotic episode in 1983, and was hospitalized in 1995 and 2003. Over the years my manic depression has informed my identity but I don’t often feel the excruciating pain of those earlier times.

All I could whisper was, ‘yes’, and hope she could feel hope. Without hope, it’s hard to get better.

Describing psychosis

Several months ago, a psychiatrist I know from DBSA-Boston contacted me, looking for people with schizophrenia or schizo-affective disorder. He is a psychiatric consultant for a pharmaceutical company and wanted to have a “Patient Day” where the researchers could meet people with mental illness.

A friend of mine, who has schizo-affective disorder, agreed to present and I asked if I could tag along as an observer.

That morning, it became apparent that they expected me to speak as well. I don’t have schizophrenia, but I have experienced three psychotic episodes, so I did have something worthwhile to share. We each had twenty minutes to talk, after which there would be a Q&A session. Nearly every week I tell a five-minute version of my experience with manic depression to a group of newcomers at DBSA-Boston. I immediately started to compose my thoughts for my presentation.

I expanded my standard five-minute introduction, describing in more depth what psychosis feels like, and expressing my frustration with the side effects of olanzapine (Zyprexa), which probably causes hand tremors that make it impossible for me to handle a sewing needle or a soup spoon. (In my former life I made wedding dresses for my sister and my daughter.) Among side effects, it’s mild, but it does impact my life. My memory problems are probably a mix of meds, the manic depression illness itself, and normal aging. My memory is definitely poorer than most friends my age.

The presentation was exhilarating. I had none of the negative reaction I unexpectedly experienced with the church mental health panel. It felt more akin to my experience at Girls' Camp 2018. I felt a connection to the researchers. Not insignificant is the fact that my dad was a research chemist for Merck, a pharmaceutical company. Besides his work with steroids, I’m very proud of the fact that I inspired his work to find an antibiotic to kill pseudomonas bacteria, after I nearly lost my leg to a pseudomonas infection when I was 18.

Talking to these research scientists about my experience with mental illness gave them insight and inspiration. And the office was just down the street from Joanne Chang's Flour Bakery. I brought home sticky buns, triple chocolate mousse cake, and pecan pie to share with Jim and our niece, Carla.

Berlin and home again

After Dresden, it rained, so on our first evening in Berlin, we had an abbreviated tour of the neighborhood. Afterward, Jim and I wandered and found a vaguely French restaurant, where I had ‘Flammkuche’. Who knew, this rectangular, pizza-like dish: thinly rolled dough covered with white sauce and toppings, is Germanic. According to Wikipedia, it is, specifically, from “Alsace, Baden-Württemberg and Rheinland-Pfalz region. (northeast France, south Germany).” It was ‘lecker’.

Next morning, we took the U Bahn (subway) to central Berlin for a tour. The tour guide was excellent, but I never bonded with the city.

We had to detour around a church where Angela Merkel and other dignitaries were attending a service in honor of “Unification Day”. On October 3, 1990, just ten months after the precipitous fall of the Berlin Wall, the former East and West Germanys reunited. Berlin became the unified capital as it had been before the partition in 1945.

We had the afternoon to ourselves and our first act was to touch the column of the Brandenburg Gate. It is so named because it leads to the city of Brandenburg, made famous by Johann Sebastian Bach’s six concerti. Here's number three. Since the gate was in Soviet-controlled East Berlin from 1945 to 1989, I never imagined I would actual touch the iconic gateway.

We spent quite a bit of time at an outdoor exhibit about the rise of the National Socialist German Workers' Party (Nazi). It is chilling to follow the timeline and realize how quickly they built an efficient and effective political machine and dismantled civil liberties. Within weeks of gaining power, dissidents were being systematically arrested, tortured, and often murdered.

For our last evening, we went to supper with our tour group, all 26 of us seated at a long wooden table in a noisy restaurant called ‘3 Schwestern’ (Three Sisters). As our guide, Caroline, predicted, where twelve days before we had been complete strangers, we were now all friends. It was a delightful evening. I think Caroline was hoping for some nightlife by herself, but she sensed our collective panic at the idea of finding our way back to the hotel without her (none of us had come near to mastering the public transit system), and agreed to lead her ‘ducklings’ home once more.

Next morning, Jim and I arose early, took a street car to an express bus to Tegel Airport. I won’t bore you with the frustrating  details, but we were ‘bumped’ from our flight and spent an anxious time wondering when we'd get home. British Airways took pity on us and their seats were more comfort than those on our outbound flight.

Now we’ve been home five days. Today we were trying to remember each of our hotel rooms. The memories are already fading. I wish I’d taken pictures of each one; it would be so satisfying to have a memory aid.

I so enjoyed practicing my German. I tried to decipher each billboard and sign. Jim said I noticeably improved as the time went on. Returning home, I’ve decided to continue studying German for the next six months and then evaluate. It’s not as practical as Spanish, which is one big reason I haven’t kept it up since college. But it has given me such pleasure and satisfaction to study and improve. I love the German language. And with my German heritage, it could be useful in family history.

And now in Berlin

This evening we said good-bye to our Dutch driver, John. Auf Wiedersehen! Tschuss! He’s been great: flexible, good-humored, an excellent driver. We marveled at the corners he turned and how he skillfully maneuvered the bus into tight spaces. When traffic jams were reported, he spent his break using a paper map to find a better way.

He made a funny joke. I’m not sure it translates well, but I’ll give it a try. In Bavaria, in southern Germany, the common greeting is ‘Gruss Gott!’ (Greet God). Trying to be authentic, I boarded the bus on our Munich morning with a sunny “Gruss Gott!” He replied, “I’m not going that far today.” Confused, I asked him if I’d used the wrong greeting for the area. No, he replied, it’s something we say: we aren't planning to go all the way to heaven today. Dutch dry humor.

It’s been cold all day and then rainy as we entered Berlin. We’ll stay here two nights and fly back to Boston Thursday morning. It’s been a wonderful experience, but we’re both ready to be at home in our own bed.

I’ve fallen in love, again, with Germany and the German language. It’s the land of my heritage: my dad’s mother’s parents spoke German and were born in Prussia. My mom’s mother, Lola Marie Bader, came from German stock as well. Because of that, I chose to study German in junior and senior high school and continued in college, reading Goethe and Schiller.

After Cologne, we stayed at medieval Bacharach, on the Rhine, and toured Rothenburg, another medieval town. Then we rode to Bavaria and toured King Ludwig’s Neuschwanstein Castle, Oktoberfest in Munich (it's so much more than beer), and Nuremberg.

Then we drove into the former East Germany. Having studied German and Germany in the 1970s, when Germany was divided by the Iron Curtain, I never expected to visit this part of the world. Erfurt, a beautiful, modern city with a medieval old town that wasn’t bombed during World War II, is where Martin Luther became a priest and later a monk and professor at the university. In Wartenburg castle, we saw the room where he hid out and translated the New Testament into the modern German language he crafted.

Today we visited Dresden, which has risen from the ashes of the February 13, 1945, fire-bombing, introduced to my generation by Kurt Vonnegut in Slaughterhouse Five.

I’d love to visit Germany again. I could stay in many of these places for longer to enjoy their beauty and explore their history. But I won’t say ‘sicher’. When I was 16 years old, as I prepared to go back home after my summer in Germany, my German mother said she hoped I’d return to Germany and visit them. I enthusiastically said, "Sicher!" “Was meinst du, sicher?” (What do you mean by certainly?)

She explained that she had already had a heart attack (she was about 35 years old) and that nothing was certain in life. It was sobering. A few years later, I learned that she had died. “Was meinst du, sicher?”

Yes, indeed.

Lünenburger Heide

When I was sixteen, I desperately wanted to work on my Uncle Dan’s wheat farm in Montana. My brothers had done it and I wanted a piece of the action. But my aunt and uncle wouldn’t hire me.

My mom suggested I ask their friend, who frequently worked in Germany, to find a German family that I could help out for the summer: a nanny of sorts. I’d studied German for three years in school with the formidable Frau Disbrow.

I paid my own airfare and lived with the Bauer family in a tiny village, Nierswalde, part of a slightly larger town, Goch, near Nijmegen, Netherlands. As an experienced mother, I now recognize that I was more of a burden than help: my German parents basically added a moody teenager to their family of three active boys.

For me, it is still the trip of a lifetime. Being immersed in German, I became Frau Disbrow's star student that following fall of my senior year. (I had been afraid of her up to this point, and I'm pretty sure she didn't like me.)

My German parents took me on trips to see a Roman amphitheater and the nearby castle at Kleve.

We also drove on the Autobahn to the Lünenburger Heide (Heath), stopping at the medieval city of Celle (established by 985 C.E.). In the Heide we visited some farmer friends. They invited us to their cherry orchard, where we spent several hours picking  from ladders, then sat around a huge bowl of cherries and ate as evening fell.

I have never eaten my fill of cherries since. We sat and talked until dark, a magical day during a wondrous summer.


Jim and I are on a Rick Steves “Best of Germany” 13-day tour. We flew into Hamburg on Saturday. Monday morning, I discovered that we would be travelling through the Lünenburger Heide. In fact, our prima tour guide, Caroline, had arranged for us to visit a working dairy farm, Hemme Milch. As we drove through the countryside I reveled in my return to the Germany of my youth. Northern Germany is not usually a tourist destination for Americans, but it won my heart long ago.

Tonight we’re sleeping in the medieval town of Bacharach on the Rhine River after touring the Cologne Cathedral. Cologne was the farthest south I got in 1973 and the cathedral was the most magnificent building I had ever seen (and I grew up just 25 miles from Manhattan). I was a little apprehensive that it had grown too large in my imagination, but the vaulted ceiling still hung impossibly high above me, a marvel of stone in air.

A Casket

August 31 was an odd anniversary: the day UMass Medical Center called Jim to say they were finished with David’s body and we could have it back. Jim and I were on a Boston On Foot walking tour of Beacon Hill in Boston. Jim took the call while we were outside the Statehouse.

In an immediate panic, I thought we had to answer them right away, make plans to immediately take possession of the body. Jim was calmer and convinced me that we could wait to respond until we did have plans in place.

Now, I realize there was no rush. The medical center must have a refrigerated morgue for such cases. I was badly thrown off: just as I'd gotten used to the idea that they might keep David’s body for two years, they were finished. I had struggled with his body being in some strange and unknown place, then suddenly had to deal with burial arrangements, 19 days after they took him away.

It all worked out. The burial was Saturday, September 12.

The morning of the burial, there was a heavy ground fog in the cemetery. As we stood near the open grave, a small flock of wild turkeys sauntered by. Some colleagues of Jim’s were there: I was touched. The Jones’ brought a small basket of purple flowers to decorate the grave.

Peter and Xiomara came from the Bronx. Victoria was exactly a month old and I felt joy through my tears as I held her. Andrew had played a similar role at my mother’s funeral, two years before. I remember my bereaved father holding his newest great-grandchild.

I have never wanted an elaborate casket. Funerals are for the living, and many people find comfort in choosing a beautiful hardwood casket with a satin interior for the body to rest in. I prefer a plain pine box. So I chose the most inexpensive casket available at the funeral home. At the cemetery, I suddenly had second thoughts. I was embarrassed at having scrimped on the casket. I was relieved that it was covered by the large American flag. (David had been in the army, so he had a military honor guard.) However, after the prayer, two soldiers stepped to the casket, removed the flag, and reverently folded it. They marched over and presented me with it.

Looking back, I’m sure no one was judging me and my frugality. I was among friends and family, who wanted to share this sad moment with us. They didn’t care what the casket looked like. They cared about us and mourned with us early on that foggy morning.

In the Dust

Yesterday I tripped and fell on the dusty Fullerton Loop Trail in California, walking with my sister, Maggie, back to her house. I felt myself stumble and instantly started to run, hoping to overcome gravity. Just as Maggie said, “Good catch!”, I realized that gravity had won. I braced myself with my hands, hoping to protect my face, but no, thud went my heavy skull, just like a toddler, contacting the ground with my chin.

I immediately assessed the damage: nothing badly hurt but my vanity. Maggie came running up and I quickly said, “I’m okay.” Then I rolled onto my back in the sandy dust, my hand resting on my chest, feeling my racing heart.

There was only a drop or two of blood, where my metal glasses cut into the bridge of my nose. Minor abrasions, now blooming with colorful bruises. About a minute after I fell, I asked Maggie to take my phone and stop Runkeeper, the fitness app that uses GPS to track my mileage and speed. Until my tumble, I was averaging a 16 minute, 34 second mile on our 4-mile walk. I didn’t want to lower my average while lying in the dirt.

The mind/body connection is fascinating. Today, each time I relive my fall, even for a moment, I feel an acute shock at the level of my tailbone. I don’t know if chakras exist, but I know that when I think about a disaster, real or imagined, pain to myself or a young child, I instantly feel it. When I see a child teeter, it’s as if I am falling. There are regions in my body that react to even a transient thought of disaster.

Impressions and Portraits

Last month, Jim and I attended the annual barbeque at DBSA-Boston (Depression Bipolar Support Alliance).

As we sat eating (my) hot dog and (Jim’s) hamburger, we watched the open mike karaoke in the front of the cafeteria. The young husband of a friend of ours went up to sing to his wife. As I glanced up at the makeshift stage, I had the distinct impression that David was standing there. Not in a miraculous way; I know full-well that David is dead. But the impression of his presence was strong. I mentioned it to Jim. I don’t think he felt it as powerfully as I did, but he saw the striking resemblance as well.

I was greatly comforted, looking upon this young man with his short haircut and lanky physique. It was as if David were in the room, untouchable, unreachable, but present as a living being.

In the prologue of my mother's memoir, she quotes Elizabeth Bennett, speaking to Mr. Darcy, "Think only of the past as its remembrance gives you pleasure." This memory gives me pleasure.

David’s birth year is receding into the past. The photo we have in our kitchen: our rogues’ gallery (as my mother called her lineup of photos of her children) is getting dated. And I will be able to update the other photos. But for David no updates are possible.

When I was a young girl, the local newspaper ran little boxes of photos on the obituary page. They were remembrances of family members, with captions like, ‘We miss you!’ and ‘your loving parents’. The hair styles and clothes were dated: these weren’t pictures of living daughters. These were long-dead daughters, oddly memorialized in the newspaper.

The photos and captions gave me an uneasy, queasy feeling. And now I feel uneasy as I realize my young guests will perceive David’s picture that same way, as my other children’s pictures are replaced with photos of aging adults. David’s will remain the portrait of a young man.

Girls' Camp 2018

Last week, Jim and I spent two days at our Church Girls’ Camp. For the Tuesday evening devotional, Jim planned to speak. That afternoon, he asked me to speak as well. The request caught me off-guard; I couldn’t think of anything I would say. But, that evening, as I sat listening to a youth leader, Jennifer, give a sweet and honest talk about failing to pass the law bar and what spiritual lessons she learned, I suddenly had a brain storm (and, yes, I took my meds that morning, so I was mostly confident (can’t ever be 100%) that my thinking was sound): pick five things to talk about briefly. I have a thing about five fingers, I’ll tell you about that in a later post. Here’s what I said:

There are five things I want you to know about me. I hope there are more than five worthwhile things about me, but I just want to share five.

First: my parents were wonderful, loving people with strong faith. They raised me in the Catholic Church. As I get older, I am more and more grateful for them and appreciate their wisdom.

Second: when I was nineteen, I learned about the Church of Jesus Christ of Latter-day Saints. I love this Church.

Third: 39 years ago I married a wonderful man. Yes, it’s the same man that is sitting right there: he’s my first and only husband. And I’ll tell you something I wish someone had told me. Even after 39 years, it’s hard. There are many things that are fun, but it can be really hard, too. I don’t know how it is for others, but it’s hard for me.

Fourth: in 1995, I had a manic episode. I have manic depression, called bipolar these days. I was hospitalized. What that means is that I was taken by ambulance to a psychiatric unit and was locked in and couldn’t get out until a doctor said I could. It was shattering. I’ve only been hospitalized one other time, and that was because I stopped taking my medication. That was in 2003. I see a therapist, I have a psychiatric nurse, and I take my medication. I hate it. I hated taking it this morning and I’ll hate taking it tomorrow, but I’ll take it.

I can’t tell the future, but it is quite likely that some of you in this room will either have emotional problems, or have loved ones with emotional problems, or maybe someone you work with will.

Fifth: three years ago, on August 12, our 27-year-old son died of leukemia. It was hard and it’s still hard. We prayed that he would get better. In fact, our Cambridge Stake had a fast that he would get better. But he died. And is it okay? Depends what you mean; it’s complicated.

You will probably have hard things happen in your life. You will have leaders and friends, in the Church and out, who can help you. Reach out to them.

If any of you ever want to talk to me, I’d love to talk. I’m quite open about my life and if I can help you, I want to.

Reach out when you are in trouble. I’ve had hard times and I’ve received a lot of help.

I love the gospel and I love my Savior. And I say this in the name of Jesus Christ, amen.


A few girls thanked me afterwards. I was happy to talk to them. I had none of the negative feelings that followed the mental health panel last month. I felt in my element. I want girls to know about mental illness, to see it’s not a death sentence, to see it doesn’t have to be a shameful secret. Even if none of them ever asks me anything, I’m confident I’ve made a difference in someone’s life. Some girl (or adult leader), maybe years from now, will look back at that evening devotional and gain strength from the memory.

Third anniversary: August 12, 2018

On Sunday, August 12th, on my way to church, I made a voice memo about David’s death anniversary. For several months, I’ve noticed that I have to count to determine how long David’s been dead. It’s been exactly three years, but it feels like four years, or five. I calculate: it’s 2018 and he died in 2015; I’m sure of that. 18 minus 15 is three. I’ve gone through that arithmetic many times. I mentioned it to Jim. He suggested that it’s because so much has happened in our lives since then. Spoleto USA, three years in a row. The total eclipse in Idaho. A reunion in Maine last month, preparing for our own in a week. The lives of our three grandchildren: Andrew, age five, Victoria, who turned three on August 12, and Eliza. We spent Thanksgiving with my sister Maggie and her husband, and saw dear Eliza on the day of her birth.

Victoria was born 40 minutes after David died. Everything we’ve done with her has happened after David’s death. Sometime after David died, I restarted my frequent drives to the Bronx to see Andrew and Victoria. (Oh, yeah, and I see their parents, too…)

This week, I’ve had an email exchange with my friend Cort. A year ago, on August 6th, his wife, Corey, died unexpectedly in her sleep. She was exactly a month shy of 41. David had been dead just two years. Although I’ve been emailing about grief to Cort, I hadn’t made the connection that Corey died just six days before David’s anniversary. And it will always be so. Maybe I’ll remember Corey’s easier that way, knowing her death was 23 months after David’s.

Friday, we took a guided tour of Lexington’s Old Burying Ground. The earliest graves date from 1690. It’s a recurring guided tour; I chose the day that Jim was available. I didn’t realize that it would be so close to David’s death date. That’s the thing about the third anniversary: I keep being reminded that I’ve forgotten. If someone would ask me when David died, I would say, instantly, August 12th, 2015. It’s there, but somehow, emotionally, it hasn’t been in my consciousness as much, frankly, as I feel it “should be”.

Early grief feels like it’s never going to change, that gut-wrenching searing pain. Even though people told me it would change, it would be easier, I couldn’t really imagine it. That’s the cognitive distortion of powerful emotion. It’s one that I wouldn’t try to talk anyone out of. I would only say, in my experience, there has been healing of the raw wound and hope they can find comfort in that. Healing has happened, is still happening.

EIght days on

Eight days after our mental health panel, I’m still recovering. I’m not overwhelmed by the reaction, but there definitely is a reaction.

The impact on me of telling my story to a room full of people surprised me. More powerfully than ever before, I was confronted with my madness. For the first time I was speaking it aloud, not to a group of sympathetic fellow sufferers or newcomers at my support group, most of whom are reeling from their first disturbing, excruciating experience of mental illness, either of their own or of their son or daughter or husband or wife. This time I was speaking to a room full of 'normal' people, who had never dealt with psychosis. The fact of my insanity hit me square in the face. Three times in my otherwise very responsible adult life I had been completely out of control.

It didn’t help that I couldn’t see many familiar faces. Every Sunday, I teach nine and ten year olds while the other adults meet together for classes. New graduate students and professionals routinely move into our congregation while others move away. There were many unfamiliar faces.

And it wasn’t just the madness. It was my description of my physical and mental limitations, the result of psych meds. To demonstrate the tremor, I tried to spoon water into my mouth. I tossed the empty spoon away halfway to my mouth. (Jim said later that it was hard to believe I wasn’t doing it on purpose, though he did believe me; it made an effective demonstration.) I expend a good deal of effort on masking my tremor. I don't drink soup in public and I’ve become expert in controlling the tremor when eating anything else. I eat only crisp and crunchy iceberg or Romaine lettuce salads: I can’t spear baby spinach or leaf lettuce.

Speaking my experience aloud, removed me far enough to see my behavior the way ‘normal’ people would, people with no history of losing their minds and sanity. It was sobering and disturbing.

I’ve written about two of my psychotic episodes in memoir-writing classes I’ve taken online with Gotham Writers Workshop. (I love GWW! Their online classroom structure is brilliant.) The student comments have been positive, and not just because that’s part of the ground rules, to be kind and empathetic, to find the good in every piece. I believe I have the skill to convey the madness and involve people emotionally. Many readers comment that mine is an important story to tell. It's exhilarating to write about the episodes.

But the panel was emotionally exhausting. A week later, as I spoke with a good friend who attended, I was still processing the experience. At first I had thought it was because I didn’t recognize many faces in the audience, that I was afraid of being dismissed as a human being by so many strangers. But, I soon realized that I’m afraid of being dismissed by myself. Can I trust myself to know the difference between mental health and mental illness? A therapist, back in 1996, when the ‘diagnosis’ was still a fresh, raw wound to my psyche, said there was a fine but  definite line between sanity and mania. He was trying to calm me, to assure me that I could trust myself and that I could function in the real world. And in most ways, I can. I don’t second-guess myself about everything; I just live life. But how do I balance the desire for creativity with the need for sanity?

Living in my body

At church on Sunday, Jim and I were part of a panel; the topic was mental health. Jack, the moderator, showed a video of Latter-day Saints talking about their personal experiences with depression. Then a young married man spoke of his depression and anxiety, which started in high school. Jim talked about manic depression (I’m not a toy magnet! I'm a person who experiences mania and depression.) and some of our specific experiences with mania, which freed me to be subjective, to try to convey a little of what it’s like to live in my body.

I have had many psychiatrists and therapists over the past 35 years. Although I hate taking psych meds, I realize that had I been born 40 years earlier, before the drugs, I probably would have spent years in locked mental institutions. My manias have been severe and debilitating. Psych meds, for all their limitations and side effects, have allowed me to live a full and rich life.

I’ve been psychotic three times (or, as Jim says, two and a half): in 1983, in 1995, and in 2003. During the last two, I was sent from the emergency department to a locked psychiatric unit.

In 1995, I was given Haldol, a powerful anti-psychotic, and slept for 18 hours. When I awoke, I felt wrenched back from the dead; it was horrible. My brain had failed me. How could I ever trust myself again?

I resisted taking meds. I had birthed six children without as much as a Tylenol. I didn’t want to take pills every day. But, I trusted what the professionals said, that other episodes would follow, in more rapid succession, if I didn’t medicate against them.

Psychotic mania is terrifying. However, in hypomania (literally: below mania) I'm more productive and creative and need little sleep. My confidence soars.

Close your eyes for a minute and remember a time in your life where you were very happy. It could be monumental, like the day you got engaged or married. It could be the birth of your child, the birthday you got the best present ever, or learning to ride a bike. It could be looking into a baby’s eyes and getting a smile, receiving a bouquet of hand-picked flowers, or seeing the afternoon sunlight through autumn leaves.

With my diagnosis, I got the message that that level of happiness is dangerous for me. Without taking pills every day to prevent hypomania (and therefore mania), I wouldn’t be trustworthy, reliable, or dependable. I wouldn’t stay sane enough to be a good marriage partner, raise children, and live a normal life.

Even on medication, any really big, creative idea of mine is suspect. I constantly second-guess myself. If I feel elated and energized, have a rush of ideas, or just wake up early, I have to question myself: did I take my meds last night? Do I need to take more?

These pills dull my edge, harm my memory, make me tremor like an 85-year-old Parkinson’s patient. I have to hold onto the railing while walking downstairs.

It took me two days to recover from the panel. That surprised me. Today, I realized why. I’ll tell you about it next week.

40th Reunion

Last month, on our way back from Spoleto USA in Charleston, SC, we drove to my alma mater for my 40th college reunion.

My mom’s older sister, Helen, didn’t graduate from college. Mom once commented that Helen was embarrassed about that, but Mom said it wasn't as important as Helen imagined it was. A degree didn’t define a life.

I graduated college, but never went to graduate school. I chose to be a full-time homemaker and mother to eventually six children. I don’t regret that, but I often wondered if I could have done more: sought an advanced degree and career when my youngest entered first grade.

Bryn Mawr is one of the Seven Sisters: an elite all-women’s college, on the Main Line outside of Philly. From 1974 to 1978, when I was there, the issue of what a college-educated woman should do with her life was a contentious one. An undocumented quotation of M. Carey Thomas, the first dean and second president of the college, had two versions: "Our failures ONLY marry" or  "ONLY our failures marry."

So, when I chose to get married a year after graduation, and had my first child two years later, I struggled with the expectations of what I should do with my life.

At our 40th reunion, the class of ’78 held a meeting. After elections (the current board ran unopposed and were reelected) and business (including a report on donations and a plea for more), the president suggested we all take a few minutes to introduce ourselves. I was sitting in the second row, and looked to be about the third speaker. Adrenaline flowed as I debated what to say. I had consciously avoided reunions, attending my 5th and 10th but none since, to avoid facing the issue of M. Carey Thomas’ expectations.

I decided to forge ahead, to stick my neck out, to be honest. I said my name and then said, “I became a Mormon, got married, and had six kids." Then, I rather militantly continued, "If you look down on me for that, I don’t want to hear about it." I might have been shaking when I sat down.

As my other former classmates (about 30 women, none of whom I knew well or shared classes with) introduced themselves, I discovered that some of them are having outwardly ‘ordinary’ lives.

Over the course of the weekend several woman approached me separately and thanked me for saying what I did. They said that my honesty had helped set the tone. I wasn’t the only one who had struggled over the years, not ‘measuring up’ to the Bryn Mawr standard: not getting a PhD or producing a new translation of The Iliad (Greek is a thing at Bryn Mawr, ancient, of course.)

The general consensus was that, at age 61, we've come to terms with life, our choices and circumstances. Life is much more complicated than our 20-year-old selves could have imagined. There are heartaches and disappointments, but also triumphs, and deep joys, with or without accolades or a tenured position at a major university.

I discovered that a classmate I’d never known before lives in Arlington, about 6 miles from me. We meet a few weeks ago and had a lovely walk on the Minuteman Bike Path, which coincidentally goes near both my home and hers. As at the reunion, it was wonderful talking to someone who in some way shared that formative experience. She also had felt the weight of “Mawrter” expectations, but had come to a place of peace with her life. Have we learned a little wisdom?

Vortices

I listened to Joan Didion’s The Year of Magical Thinking a few weeks ago. It’s in the standard bibliography of grief books. I didn’t read it three years ago, because her experience seemed so different from mine: her husband had a massive heart attack. A husband of thirty-nine years, dying at the dinner table. A world apart from a 26-year-old son dying of leukemia. But, she’s an excellent writer, articulate, honest, and insightful, and her memoir of grief helps me process mine.

Without warning, memories suck her into a powerful vortex of grief. It happens in places with a connection to her husband. She tries to avoid the places, but there are too many memories in too many places.

My vortices are fewer and further between these days. The most constant is listing my children. The winter before David died, we rented a house in the Catskills for our annual family ‘Summer Retreat’ in August. Not knowing if we would even use the house, we had done no further planning. He died Wednesday, August 12th. On Sunday we had the visiting hours at our former-funeral-home house, followed by a service at church. Monday we packed quickly and left for the Catskills That afternoon, as I sat in front of a large picture window in the country kitchen, I started a menu plan and grocery list for the week: days across top of the page and people down the side. Jim, Mary, R’el, Peter, Matt... and I was plunged into an emotional chasm that took my breath away. For 26 years, there was no hesitation. It was always Matt, David, Annie. Now there was a gaping black hole after Matt’s name and before I could get to Annie’s.

That vortex remains. Early on, I’d name my children in random order, but that would confuse me and I’d desperately count, unsure if I was missing a living child. Without consciously thinking about it, I settled into naming the three oldest (David is the fourth), then the sixth and fifth. That still leaves me befuddled: it feels like way fewer the six minus one. But I just can’t go in age order; my heart rebels. Trying to avoid a vortex, I find myself teetering on the edge.

Thoughts in a waiting room

Eleven days ago, I was sitting in a large wooden armchair enjoying the sound of water burbling over the artifical rocks in the four-story atrium of St. Vincent Hospital in Worcester, waiting for my son, Matt, to get out of surgery. When my friend, Amy, heard that I was escorting Matt, she asked, “Are you OK with this, or will it give you flashbacks from the time you spent in hospitals with David?

I was surprised by her question. I hadn’t consciously connected the two. But, hadn’t I? When Matt offered to take a 6:30 a.m. Uber to St. Vincent, so I could do the hour drive to Worcester a few hours later, I knew I wanted to be with him from the start. That’s what moms do.

In Maxine Hong Kingston’s memoir, The Woman Warrior, she describes her Chinese grandmother going to the airport hours before a plane carrying her relatives would land, sitting, waiting, willing the plane to cross the Pacific from China to Los Angeles. Trusting in the power of concentration and attention.

I love that image, though I didn’t expect my presence to change any outcome, (the surgery went well, by the way), but I knew I wanted to be there. The father of a friend of Matt’s, years ago, stopped breathing during a minor surgery. His friend’s mother was at the hospital, alone, so I went and sat with her in the ICU waiting room. She recounted an amusing incident: when he woke up in the ICU, he asked how it went. "You stopped breathing," she told him, and his eyes widened in wonder. Five minutes later he asked, “How did it go?” She told him again: his eyes widened. Over and over this scenario played out, until his short-term memory returned.

Waiting for Matt, the memory of that day came into my mind. I was glad to be there.

I pondered Amy’s question; as I did, I was grateful Matt wasn’t at Walter Reed or Mass General. That might bring back ghosts. The restroom at St. Vincent uses the same automatic paper towel dispenser, from Georgia Pacific, as Mass General. How many times I washed and dried my hands, waiting for the results of David’s lab work, or for his blood transfusions to be completed. For fifteen months, I kept my Mondays and Thursdays open, never knowing how long the appointments would last, or if the day would end with an overnight stay.

All of that is fading into the past. It was so much of our lives, as we lived through it, and as treatments failed, and David lost weight, weakened, and died. Next month will be three years, it feels recent and in the distant past at the same time.

The longest day

All year long I wait for the longest day of the year. I love living in New England, but the price I pay are the dusks that fall at 4:30 p.m. in mid-December. But I feel like I missed it this year. I look back on last week. June 21: a morning appointment to help Marissa with family history research, early afternoon facilitating at DBSA-Boston, my manic-depression and depression support group. Supper with Jim, then a panel of entreprenuers speaking in Jim’s office in the evening. So, as the late dusk fell, I was in a small group, fully absorbed in a fascinating presentation.

Next morning, I was up at 5 a.m. to drive to Worcester and be with Matt for his surgery. Saturday was spent with our daughter and friends. Busy days, that’s wonderful. The last two days have been busy too. And suddenly it’s five days after the longest day and I can feel in my bones the days getting shorter.

Maybe I’m being morbid. Maybe it has to do with listening to The Year of Magical Thinking by Joan Didion. In beautiful and insightful prose, she chronicles the year after her husband’s sudden death by massive heart attack. Of course, I thought about David, especially when she mentions, several times, dilated pupils: a physiological sign of death. More on all of that in a later post.

I just looked it up: yes, my imagination is running away with me. The longest day was June 21st, but today was a mere minute shorter. And the latest sunset, at 8:25 p.m., occurs June 24-29 this year. I was out in my garden at dusk tonight, watering my tomatoes and tying back my red raspberries. I’m glad to know I was enjoying one of the latest dusks of the year.

Another Death

The daughter of a friend died last week. I offered to visit and talk to her, experienced bereaved mother to newly one.We had a long, intimate conversation.

This morning came the reaction. Not the gut-wrenching, bend-over-in pain, can’t-catch-my-breath reaction, but a renewed awareness of our loss. I feel guilty: I find I go days not thinking about David. On the wall of my office, a little above my sightline, is a line drawing of him. An artist drew it from our favorite photo, taken on our daughter’s wedding day. He had pronounced himself “extremely presentable”. He never spent much time worrying about fashion. When he was on his mission, he described a haircut a member of the church gave him. It was in the backyard and the amateur barber finished the job with a leaf blower. Writing this, I look up at the grey drawing in its pewter-tone frame. I haven’t looked at it for months. Nearly three years on, it takes longer for the grief to settle in; it’s easier to ignore it and keep it at bay.

My heart goes out to my friend. That’s so cliché, but words are inadequate. Another cliché. The thing about clichés is: they can be true. My daughter objects to people on Facebook responding in reaction to a death: my thoughts and prayers are with you. “What does that even mean? How much time are they spending actually thinking and praying?”

She has a point, but being on the other side, watching a friend be thrown into grief, I don’t know what to say either. The cliché at least gives me something, allows an exchange of words and feelings.

I know I’ve quoted this post before: Annie Lamott speaks to my heart. It’s who I want to be.

Gravity yanks us down…We need a lot of help getting back up. And even with our battered banged up tool boxes and aching backs, we can help others get up, even when for them to do so seems impossible or at least beyond imagining. Or if it can't be done, we can sit with them on the ground, in the abyss, in solidarity.

My friend doesn’t live close, so it’s not practical to visit every day. But maybe I can text. I’m not an avid texter: with my hand tremor (another side effect of psych meds, just like the cognitive limitations) it’s slow and laborious to type out words with one finger. My thumbs are especially affected by the tremor, so the fast typing with two thumbs my friend Cami does, Googling with ease, is something I watch with awe.

Eradicating Poison Ivy (and other weeds)

Today I faced the poison ivy in my yard. As soon as I realized, three weeks ago, that I had a poison ivy rash, I started wondering how to get rid of the plants. I got the rash while weeding garlic mustard from my north yard. Today I learned, from careful observation, that there were three ‘leaves of three’ species in our yard. The one I identified that fateful day was tiny wild blackberry brambles. Another plant I noticed today was small, with serrated leaves. I’m pretty sure it isn’t poison ivy, but I was taking no chances: I pulled every last one. And of course, there was actual poison ivy, which initiated the allergic reaction that sent me to urgent care after a week of toughing it out.

It took me nearly three hours to actually get out and work in the yard. Constructive procrastination, Jim's dad used to call it. I was apprehensive that I’d break out again. As I procrastinated, I improved my strategy. I prepared some poison-ivy herbicide. Even Amy, a suburban homesteader who promotes natural remedies for gardening challenges, recommends chemical herbicides for tough cases of poison ivy. She does recommend leaving the plants where they don't disturb human activity: they protect against erosion, make good boundaries for forests, and produce berries that some birds eat.

Last week, I bought two disposable Tyvek suits, complete with attached booties. The supplied black gloves were as thin and short as exam gloves, and I couldn’t keep my wrists protected, so I added a pair of long purple rubber gloves.

I’m very frugal (ask my kids) and thought of reusing the $10 Tyvek suit and $5 purple gloves.  However, the suit was nearly worn out after six and a half hours of bending, kneeling, pulling weeds and cutting brush. It was fun to peel myself out of the suit, roll it up inside out, and trash it.

After 6 1/2 hours: 4 bags full of weeds

I used my best Red Cross First Aid glove-removal technique.Sweat came streaming out of them. My finger pads were prunes. Cheap spa treatment.

I’m pretty confident that I didn't touch any poison ivy, but I’ll only be certain in three days, if I don’t develop any rash. I’ll keep you posted.

Elbows and Steroids

Two weeks ago, I did some ambitious weeding, eradicating the extremely invasive garlic mustard (such an innocuous name) from my north yard. I worked on it several hours.

I saw some wild raspberry brambles, which produce small, dryish berries, and I pulled them. There must have been some other ‘leaves of three’, but I didn’t notice them.

Two days later, driving to Charleston, South Carolina, for Spoleto Music Festival, I developed a large welt on the inside of my upper arm and a small patch of rash below my elbow. I thought it was an allergic reaction to a spider bite. Over the next six days, more and more tiny red bumps erupted on the inside of my arms, little pin-pricks, smaller than mosquito bites, developing into archipelagos surrounded by seas of hot, angry red skin. By Wednesday, I could barely bend my arms. After our last concert, a sweet usher noticed me leaving. She pointed to my arms and said, “Is that poison ivy? It looks very painful. I've had that. The only thing that works is steroids.”

We found an urgent care office and I got a steroid shot. I'm sure it didn't have an immediate effect, but I felt instantly better: the desperation of the past six days melted away. Oral prednisone promised steady recovery.

My dad, Dr. George G. Hazen, received a patent in 1963 for a process simplifying and speeding the production of steroids (particularly A-anhydrosteroids from ll-hydroxy-steroids). I'm grateful for his careful and creative research.

I hoped our vacation would include time reading and writing. However, the rashes on my arms made it painful and difficult to bend my elbows enough to use the keyboard, hold a book, or even help with a jigsaw puzzle.

I never realized what a blessing elbows are. I spent several days with my arms out straight, careful not to bump them on anything, and several nights sleeping on my back, Ziploc bags full of crushed ice tied to both arms with long black sox.

The concerts were wonderful: the Miami City Ballet, Samuel Barber's Adagio, an Australian circus troupe, Backbone, taking on gravity and other myths. But there were many uncomfortable hours of inactivity.

I understand how useful opposable thumbs are in making and handling tools. But elbows: I hope I never take them for granted again.

Sad News

Sunday evening, our daughter, Annie, shared some very sad news with us: Jim’s cousin’s youngest son died in a motorcycle accident on Saturday. He was 25.

What else is there to say?

SWIM!

I’ve continued to think about my campaign to end whining in my life. “Stop whining!” developed into “Stop whining, Mary!”, then “Stop whining immediately, Mary!” and finally: “Stop Whining Instantly, Mary!” I love acronyms and I love swimming. “SWIM”. I love the feeling of moving through the water; I want to move through life.

And what have I been whining about? My inability to read and retain information. Last week, I had a break-through. Jim and I were driving his sister, Mary, (the original Mary Johnston) to O’Hare airport in Chicago. They were talking about books. Instead of envying them, unable to join in the conversation, I quietly listened, enjoying their knowledge and appreciation of good writing.

Where did my disability come from? I remember quite clearly, 22 years ago, when I first started taking a psych med, feeling dull and slow-thinking. I could only read comics in the Boston Globe, no articles and certainly not a book. Kay Redfield Jamison, my hero memoir-writer, describes a similar symptom. My ability improved and I don’t have clear recollection of the intervening years. About ten years ago, I told a woman at DBSA-Boston (Depression Bipolar Support Alliance) that I struggled with reading. It was all I could do to read my scriptures. She smiled and said, "I'm glad you can read your spiritual writings." I hadn’t appreciated what I did have. She had just returned from Israel and had brought back small gifts for her friends at DBSA. Even though she hardly knew me, she gave me a small, translucent stone with the word “miracle” etched in it. Perhaps looking at the stone would help make a change in my life.

I appreciated her optimistic attitude and, over time, reading has gotten easier.

I’m at the point in my life (I’m 61), that I can’t say for sure what causes any of the problems I deal with. Back in 1995, when I was 39, I could see clearly that the psych med changed my thinking and abilities. Later I learned that manic depression is a progressive disease. The psych meds keep the symptoms at bay. Is the underlying illness contributing to my symptoms? I have a harder time reading when I’m depressed.

And now, in my sixties, age starts playing a role. If my symptoms worsen, perhaps it’s the age-factor.

Whatever it is, and it must be a combination of factors, whining does nothing but slow me down.

Each time my son Matt suggested audiobooks, I resisted. I won’t be able to remember what I’ve heard; I will get distracted and miss things. But, when I stopped whining and to took his advice, I was excited with the results. Listening to an excellent narrator read with energy and expression, I am able to follow and retain. As the weather improves with the change of season, I look forward to long walks accompanied by great ideas and literature.

Worst-case Scenario

I was first introduced to cognitive behavior therapy (CBT) by David Burns, in his best-seller, Feeling Good, where he identifies10 cognitive distortions. I practice all of them on a regular basis, despite years of 'understanding' their negative effects. Fortune-telling, a subset of Jumping to Conclusions is perhaps my favorite.

Last week I spent a beautiful spring day in New Jersey with my sister Maggie, who lives in southern California. We visited our disabled brother, Mike, at a LTACH (Long Term Acute Care Hospital) in Newark, then drove 22 miles south to our parents’ grave in Perth Amboy, provincial capital of the colony of New Jersey. We planned to meet another brother (we have four), Carl, for supper at Ruthie’s Bar-B-Q and Pizza, in Montclair. Susan had told Maggie that parking was tight. As I drove the 26 miles north on the Garden State Parkway, I struggled to talk myself down. To avoid rush-hour traffic, we planned to arrive at Ruthie’s 2 hours before our date and take a long walk in the lovely township of Montclair. If we parked in their parking lot so early, would someone from the restaurant notice us walking away and call a tow truck? My attempts to quiet my mind failed, so as we got off the parkway, I admitted my fears to Maggie.

“You always go for the worst-case scenario, Mary.”

I was taken aback. I recognize (sometimes) my modus operandi, but I didn’t realize I was so transparent about it.

As it turned out, there is no parking lot at Ruthie's and we parked on the street. Checking my GPS, we found Eagle Rock Reservation and drove to the 9/11 memorial with it's stunning view of the NYC skyline.

Back at Ruthie's, we again parked just across the street and enjoyed a lovely supper with Carl before I headed back up to Lexington.

What's your quirk that is obvious to everyone around you? (or at least to those who love you)?

Stop Whining!

No, I’m not talking about bereavement. I will be bereft of our son, David, until I die and meet him again.

I’m talking about some other whining in my life, specifically having to do with the side effects of taking manic depression medications. (For another post: why I hate the term ‘bipolar’.)

It has to do with subscribing to audible.com, after months or years of another son recommending it to me. I recently finished my third audiobook, A Town Like Alice by Nevil Shute. I saw a PBS miniseries back in my late teens and later read the book. I thoroughly enjoyed revisiting it. Listening to it brought me in touch with Mary Hazen. The one who wasn’t afraid of mania or depression, who didn’t have to worry about drug side effects.

What would she think of my whining? She would have no tolerance for it. So why should I? Habits are hard to break, but I’m ready to live onward without this one.

Wish me luck! I’ll let you know more about it next week.

Patriots' Day 2018

Yesterday, the third Monday in April, Massachusetts and Maine celebrated Patriots' Day. The Lexington Minutemen held their annual reenactment of the Battle of Lexington.

As has been our tradition since 2003, Jim and I invited people to park on our property. Our yard is the perfect place to park and walk to the Battle Green, where colonists gathered and awaited the arrival of the red-coated army early in the morning of April 19, 1775. Our Sunday night was very cold and full of sleet. By 4:00 a.m. it had changed to heavy rain and, as expected, we had a small  turnout: 30 cars. (We have the capacity to park 65.) 

At 3:30 a.m. I was in the kitchen, making 2 gallons of hot cocoa and preparing for our breakfast guests. The reenactment takes place at 5:30 a.m., as did the actual battle. However,as a concession to the modern American custom, we now celebrate Patriots’ Day as a Monday holiday.

Despite the rain, about 100 people came for breakfast. They carefully wiped their shoes, so the floors hardly got wet at all.

I’ve been thinking of our history with David. By Patriots’ Day in 2014, David had been at Walter Reed Military Medical Center for 27 days. He didn't tell us not to go, so we returned home for Patriots' Day. Jim posted a picture in the living room of David, smiling and sitting up in his hospital bed.

By 2015, David was living at home and very sick. The stem cell transplant had failed over 10 months before. We went ahead with the breakfast. In 2016, we had the first Patriots’ Day without him. Matt ran the Boston Marathon later that day, raising money for the Leukemia and Lymphoma Society. Since 1897, the Boston Marathon has been held on Patriots' Day. (The first modern marathon was run in Greece just the year before.) Last year, R'el ran for LLS.

It's a relief to have the Patriots’ Day breakfast over. I enjoyed it, but the preparation and execution takes a lot of time and energy. It’s pleasant to be one of the ‘old-timers’, sharing a bit of town and national history with people who are interested enough to arrive at our yard between 4:00 and 5:00 a.m. It’s also pleasant to take a nap in the afternoon and then savor a full night’s sleep.

The Gift

The Cambridge Stake choir and orchestra presented their audiences with a gift this past weekend: Rob Gardner's oratorio: Lamb of God. With practice, prayer, and the wisdom I wrote about on March 20th, I sang in the choir with just a few tears. When emotion would start to well up, I’d stare at the back wall, focus on supporting my sound, and concentrate on the gift.

The copyright arrangement included permission to stream the performances live on Facebook and leave the video up until 11:59 p.m. on Monday night.

Monday morning, I spent an embarrassingly long time identifying the timestamps of my appearances for my family. My silver hair and face were occasionally on camera, hovering behind the pewter-grey post of a floor lamp.

Early in the evening, I listened to the entire piece with Jim, then spent the rest of the evening working on my computer while listening to my favorite parts for hours on end, knowing that the next day the video would be gone. As I listened, I let the beauty of the music and message wash over me and my pent-up emotion flow out in tears. It was my turn to be moved and gratefully accept the gift.

One of the disadvantages of performing is that you don’t get to hear the production. At my skill level, I'm absorbed with technique: counting, coming in at the right time, singing the right notes and words, attending to dynamics and phrasing. What a luxury to spend the evening opening the gift, over and over again.

Oratorio Next Weekend!

April 7 & 8, 2018, I will be singing in the choir of Lamb of God, an oratorio by Rob Gardner. I blogged about it two weeks ago.

If you can't make it to 65 Binney St. in Cambridge, Massachusetts (near MIT and the Red Line Kendall Square stop), watch it live here:

http://bit.ly/LambofGodCambridge

Easter Sunday 2018

I remember our first Easter after David had died. A sweet friend of mine remarked that the day must be especially wonderful and meaningful for me. She meant that the Easter message of hope and resurrection must be resonating deeply in me.

I was not feeling joyful; I was missing David painfully and feeling the loss to him of all the experiences mortality has to offer a young man in his late twenties. I smiled and thanked her: I would never want her to know she added to my misery. I didn’t have the self-possession to talk about my deep feelings.

This year is different. I still miss David and mourn the loss of him and to him. Random experiences bring tears to my eyes and emptiness to my heart. But they are fewer, further between, and shorter in duration. I sang “Christ, the Lord, Is Risen Today” with our ward choir with no pang of sorrow, no uncontrollable tears.

Last night, at bedtime, Jim really wanted to watch a movie. We are on a Fred Astaire kick (sorry, couldn’t resist. No, I could have, but I didn’t.) For Christmas, Jim gave me Fred Astaire’s autobiography, along with a book about his early career with his sister, Adele, and an over-sized, comprehensive book about each of his many films, with hundreds of screen shots from the dances. We’ve been working our way through the Astaire/Rogers movies (all of which we own), while dipping into this comprehensive tome.

Spoiler Alert!

Next in the chronological queue was The Vernon and Irene Castle Story. I remember vividly the first time we watched it, sometime after David died. As the final credits rolled we sat silently, stunned and frozen. We had trusted Fred Astaire to deliver a light-hearted confection. But suddenly, Vernon Castle is killed during a routine military plane exercise, hours before a long-anticipated reunion with his wife. I looked him up today: he was 31. David was 27.

We didn’t finish the movie last night, not out of sorrow but sleepiness. I probably will cry at the end: I usually do. But it won’t be devastating; I won’t feel abandoned by Fred Astaire.

To Give a Gift

On April 7^th and 8^th, our Cambridge Stake (the group of 12 congregations we belong to) is presenting Lamb of God by Rob Gardner. It’s a moving oratorio about Jesus Christ’s life, sacrifice, and resurrection.

I have the privilege of singing in the choir, conducted by Nicolas Giusti, a world-class musician from Rome, Italy, who now lives in Boston. He is great leader: he inspires the best in us. From the initial rehearsal, he focused on expression, not just hitting notes and beating out rhythm. Musical dynamics now has a new, deeper meaning. Before, dynamics had simply meant the volume of the music: soft or loud or some gradation. But, the origin of the word is Greek, dunamis, power, which derives from dunasthai: to be able. I’ve never thought of this, but that technical term, ‘dynamics’, expresses exactly what Nicolas is drawing out of us: the life, the movement, the soul of the music.

On Sunday evening, the choir rehearsed for the first time with the vocal soloists and narrators. I was overcome: I couldn't control my emotions while hearing and singing such powerful music.

At the end of the rehearsal, I caught up with one of the soloists. I choked up as I told her how close to the surface my emotions were. We sat on the couch in the foyer and she shared her wisdom with me.

In singing, you are giving a gift to the audience. They will be able to accept the gift and feel in themselves the emotion and beauty of the music. But if you lose your composure, the audience gets nervous. They’re not sure what is going to happen. This detracts from the gift.

As I listened to her, drying my tears and welling up again, I nodded, still uncertain how to proceed. She suggested praying about it: praying for the strength to give the gift with composure.

I have 18 days to practice. I dearly want to perform. What she was telling me is: it’s not about me: it’s about the audience and giving them a musical and emotional gift.

I had a sweet young mother over for lunch today. As I was describing my family, I said that Sam, our youngest was nearly 27. Just Sunday I heard Jim mention David: “Our 27-year-old son, David, died of leukemia.” And in a few weeks, our youngest will be that age. And in 11 months, David's younger siblings will both be older that David will ever become in this life.

Ticking off the Days

I didn’t post last week. I avoided writing until Tuesday afternoon and then was completely uninspired.

Yesterday, I realized why: I’m approaching the fourth anniversary of March 19, 2014, the day my life changed forever, March 19, 2014. The day David phoned me from the hospital in Seoul, Korea, and told me he had leukemia. Seventeen months later he was dead.

I hadn’t consciously thought of the date, but something inside me has been ticking off the days.

I’ve fallen back into the trap of expecting the grief to ‘be over’. Although I say to close friends, ‘you never get over this’, I’ve yet to completely accept that. Or I fear I’ll turn into a whiner. But that’s not the underlying danger: forgetting is. Deliberate forgetting to avoid the pain of remembering and the natural forgetting as memories fade over time.

I don’t have clear, extensive memories of what our children were really like as they grew up, just brief vignettes and memorable incidents. I regret not keeping a ‘mother’s journal’.

My friend, Susanne and I took our weekly walk yesterday, on the bike path. Today there’s about a foot of snow on the ground and it’s still falling. I’ve been inside the house, watching the snow fall and hoping no more large limbs fall from our moribund trees. We have wonderful tall maples and evergreens on our acre lot, but many of them aren’t healthy. Last week, during a heavy snowfall, a major maple tree limb fell into our circular driveway, missing Jim’s car by inches. Before we’ve had a chance to hire someone to remove it, we’re in the middle of another nor-easter. Last night I spent a half an hour dragging the moderate-sized limbs to our big compost heap so our snowplow driver can clear most of the driveway.

Unfinished Business

Two weeks ago, Jim’s mom and I spent the day at Temple Square in Salt Lake City. In the Joseph Smith Memorial Building, originally the luxurious Hotel Utah, (built in 1911), we saw 'The Craftsman', a film about Danny Sorensen. A little older than me, Danny has loved flying all his life, is an accomplished show pilot, and has hand-built two planes. The opening shot of the nose of Danny’s bright red plane, “Unfinished Business,” brought sudden and unexpected tears: David has sixty years of unfinished business.

And then, one of Danny's and Alynn's daughters developed a brain tumor at age four.

I admire the faith, courage, and wisdom of the Sorensens. And the aeronautical cinematography is stunning on the big screen. (I love airshows!)

In my Compassionate Friends group (a support group for parents and siblings who have lost a child or sibling to death), one mother described how her deceased son energizes her to live life more fully and do significant, hard things: "for Nick". His unfinished business has become her inspiration.

What’s your inspiration this week?

Genealogy Heaven

Early last Tuesday morning, I joined about 40 other passengers to board a Southwest plane to Milwaukee. We each got an entire row to spread out in. Almost as good as first class!

In order to save the $400 premium for travelling on President’s Day weekend, I chose 11 hours of travel time to get from Boston to Salt Lake City, via Milwaukee and Los Angeles (yeah, California). Have Kindle, will travel! I remained on the same airplane all day and had a unique experience in Milwaukee. After refilling my water bottle in the terminal, the gate agent waved me through to re-board the plane before the waiting new passengers. I walked down the jetway alone and directly into my chosen seat: no line, no waiting. What a feeling of power and privilege, to board before anyone else, without showing a boarding pass. (I’m easily amused.)

That afternoon I rented a car and drove to see Savannah and dear little Eliza, who are visiting Utah from L.A. (I practically flew over their apartment building, but they weren’t there.) The eagles were gathering (Luke 17:37) for a double baby blessing for Eliza and her month-younger cousin, Leo.

Over the next two days, I spent over eight hours at the huge Family History Library (FHL) on Temple Square.

I had no idea what to expect: over the last nine years, millions of records have been digitized and are available, free of charge, from home through FamilySearch.org. What could the FHL have to offer?

What I found bowled me over: several floors, each with a huge corps of experienced volunteer genealogists, eager to guide me to the next level of research.

A seasoned genealogist helped me find an image of my great-grandfather’s handwritten baptismal record, dated October 27, 1860, from Poznan, Prussia, now part of Poland. There are records going back to 1558.

Another volunteer, experienced in Lithuanian and Polish research, introduced me to research tools for Polish locales. Amandus Gustav Bruesch and his parents, Gottlieb and Justine, spoke German, but his birthplace, Poznan, is now a Polish province, 100 miles from the current German border. I’ve daydreamed about visiting the Bruesch homeland: turns out I’ll have to travel to the middle of Poland.

With family activities, I won’t be able to return to the FHL this trip, but I’ll be back. Imagine an entire building of seasoned genealogists, united in their desire is to share their expertise.

Georgette Dione Boucher, 1921 - 2018

Around 3 a.m. on Thursday, January 25, Georgette Dione Boucher died at age 96. I never met ‘Georgie’, but my friend, Diane, was her next-door neighbor and took care of her for many years. Diane loves to say that she was on her trike the first time she met Georgie, when the Bouchers moved in. It was a close-knit neighborhood, where Georgie and Diane’s parents and the other adults kept an eye out for all the children as they played outside with a freedom that's a rarity today.

Georgie never had children and her husband died many years ago. Diane took care of her like a daughter. All of Georgie’s needs: the headaches of house and yard maintenance, the complications of home health care, the intricacies of financial planning and organization, fell on Diane, who willingly served her. Diane did more for Georgie than many daughters ever need do for their own mothers.

After Georgie died, I met Diane at the Keefe Funeral Home to help her make arrangements. Unfortunately, I know about funeral arrangements. I planned the Funeral Mass and my friend, Amy, and I interviewed Diane and one of Georgie’s Canadian nieces for the obituary. I organized a women’s a cappella quintet to sing the closing hymn at the Mass at St. Agnes Church in Arlington Center

For five days I worked on the myriad of details that seem to pop up between the death and the funeral. I was grateful for the chance to help my friend, but it was exhausting. I looked forward to January 31, when the funeral would be over and I could relax.

What I didn’t anticipate was the emotional reaction when it was all over. The funeral was on Wednesday, January 31. On Friday, I saw my friend, Jen, at a craft store. Jen asked me how it went. As I told her about my week, I was amazed, incredulous that the funeral had only been 50 hours previous. It felt like a month ago. More accurately, it felt like it had taken a month out of my life.

I’d gladly volunteer for the job in an instant; I'm grateful I had the expertise and time to help my friend.

The emotional exhaustion was due to the personal subtext: my mother's, my father's, and David’s deaths, funerals and burials, the grief for all of these losses, a grief I still feel, and most poignantly for David, who died so young.

As I move onward in my life, I now experience what I couldn’t imagine at all: what it’s like to have a son who’s been dead for nearly 30 months. There’s a symmetry in that: he would have been 30 in October, and now it’s been 30 months. A month dead for each year alive.

I suppose it will always be a strange thing. How can my son’s body, once strong, vibrant, and alive, now be lying in the cold frozen ground of New England?

Powerful Music

I heard Shankar Vedantam's Hidden Brain podcast last week, "Fresh Starts". In 2006, Derek Amato struck his head after diving into the shallow end of a swimming pool and woke up to discover that he could compose music at the piano. An acquired savant. He can’t pick out “Twinkle, Twinkle”, but he can spontaneously create intricate pieces and play them fluidly.

I don’t watch television, so maybe I’m the last person in America to hear about Derek. He’s teamed up with a jazz singer, Mandy Harvey, who totally lost her hearing in college. Derek wrote a song for her, "The Script".

As I listened to Derek play on the "Fresh Starts" podcast, I remembered a George Winston album: Winter (1980). Winston was creating beautiful albums at the same time Jim and I were creating of our marriage and family. I listened to that tape countless times in the 80s, in southern Indiana and New Hampshire. We chose to have no television, so radio and tapes were my window on the world.

I love classical music: Bach, Mozart, Brahms. But there is something in George Winston and Derek Amato that touches me deeply as well.

Snow covered the ground this morning, brilliant white and light as feathers. Massachusetts is in a George Winston mood.

Freezing Rain

I was first aware of the freezing rain on the top step of my kitchen porch. Balancing a black plastic bag of clothes to donate to Goodwill on top of a box bound for the same destination, I sensed the sole of my shoe slide, just a quarter inch, enough to wish I had a free hand to grab the bannister. Leaning on my elbow, I was able to balance the load and inch my way down to the sidewalk.

It’s been a long time since I’ve seen freezing rain. More often, in winter, it either snows, sleets, or just straight-out rains.

A layer of ice coated my blue car. As I scraped the windshield, it broke into large, ragged pieces the size of dessert-plates, like impossibly thin, delicate sugar candy.

On Mass. Ave. I had a sweet David moment. A pedestrian with a large blue umbrella crossed the street ahead of me. I stopped, as is Commonwealth law, and waited until he arrived safely at the opposite curb. I could hear David telling me, disparagingly, that the law said you had to stop until the walker’s foot touched the opposite curb. “I guess that’s in case he decides to turn around and go back across.”

As part of his end-of-year accounting, Jim wrote to each of our kids, reporting the balance in their ‘HeirBanks’, where we keep track of their loans and debts. His email to me was brief:
            "I’m missing David..."

The Little Green Guestroom

I woke up this morning in the small guest room in Riverdale (the Bronx). at Peter's and Xiomara's. The last time I slept in that room was March 18, 2014. How do I know with such certainty, without consulting a calendar? Because the following morning I was lying in bed, waking up luxuriously slowly, when my cell phone rang. It was David, calling from Korea, where his Army unit was stationed. Only, he wasn’t on base; he was in St. Mary’s Hospital in Seoul, where he had just been diagnosed with leukemia.

I must have driven home that day; but I don’t remember it. A week later we picked him up at Dulles Airport and drove to Walter Reed National Military Medical Center, which I dubbed WReNMiMiC. (I wanted an acronym and Matt found one: a real word, wrenmimic, that fit perfectly.)

My thoughts last night weren’t morbid; there was just an awareness of the significance of the moment. I also had in mind an old friend of mine, who is suffering from a rare and very aggressive cancer. I had just read the latest CaringBridge post from her daughter. The highlight of the post was that she'd taken a shower after days of excruciating pain.

My friend Kimberly, whose husband died of pancreatic cancer much too young, remarked once that cancer steals a person’s dignity. That’s true. The autonomy we so cherish, or would cherish if we didn’t take it for granted, evaporates. We lose the ability to get dressed and go out to the grocery store, watch a movie without pain, enjoy the pleasure of taking a shower independently, cook a meal, and eat raw fish at a sushi restaurant (if you like that sort of thing. I do.).

The memories last night haven’t sent me down into the abyss of grief. I’m feeling quite calm.  Life goes on: there are meals to cook, sushi to eat, grandchildren to play with.

Although I returned to my near-monthly routine of driving down to New Jersey and New York City about a year ago, I hadn’t sleep in the guest room again until last night. Peter and Xiomara have been trying to close on an apartment for over a year, and had filled the little green room with furniture and appliances destined for the new apartment in North Riverdale. On earlier trips, I've slept on their couch.

But yesterday, the bed had returned to a horizontal position, with a lovely comforter on top. The extra furniture and appliances are in the new apartment, which is being painted.

I was worried about sleeping in that little room, haunted by the ghosts of the past, but I've developed a little stratagem. After lights out,  I count by threes. I’ve always had some dyscalculia, so its a challenge to  get past 39. The concept is to focus on the task of counting and let other thoughts and worries drift through my relaxed mind. I start playing with the numbers, noticing when familiar numbers come up: 54, 60, 81 and checking that the digits always add up to a multiple of three. I know, it’s elementary stuff, but it works. The concept is to keep enough focus to let go of agitation and let my mind drift in and out of consciousness. I don’t know if this will work long-term, but right now it’s a useful tool in my mental toolbox.