Mind Fixers

I just finished listening to Mind Fixers last week and am looking forward to hearing the author, Anne Harrington, a history of science professor at Harvard, speak at our DBSA-Boston speakers series in 2020. (I’m the coordinator of the series.) I’ve recommended the book to several people, including R'el, my psychiatrist daughter at Bellevue.

The full title of Harrington’s book is Mind Fixers: Psychiatry’s Troubled Search for the Biology of Mental Illness. It’s a thorough history of American psychiatry, from its roots in Europe through the 2010s. She chronicles the jockeying for position between the ‘neo-Freudians’, who advocate psychoanalysis and the psychiatrists who believed in a purely biological cause of mental illness. According to Wikipedia, neo-Freudians have been defined as "American writers who attempted to restate Freudian theory in sociological terms and to eliminate its connections with biology.”

I had a manic episode in the early eighties, when our first child was just turning two and our second was six months old. I had a more severe, more psychotic mania in 1995. When Jim could no longer recognize me, and feared for our children, he signed me into a locked psychiatric unit. When I emerged I was convinced to take psych meds, told that my episodes would get more frequent (than every twelve years) and more severe. Seven years later, against medical advice, I stopped the psych meds, cold turkey, with predictable results: another ambulance ride to the same psych unit. Since then, I’ve taken meds for sixteen years. I don’t like it, but don’t see a viable alternative.

I’m an active member of DBSA-Boston, a local chapter of the national Depression Bipolar Support Alliance and have facilitated support groups about once a week for nearly ten years.

Quite a while ago, based on my own experience and my observations in DBSA groups, I rejected the ‘chemical imbalance’ view of mental illness. As far as I can tell, and as Harrington states persuasively, no one knows the deep cause of mental illness. There’s no blood test, no diagnostic brain scan, just a list of symptoms in the DSM (Diagnostic and Statistical Manual of Mental Disorders). It’s rather like diagnosing an illness by the type of fever produced (that's a effective simile I read). And why do the meds fail so many, especially those who are depressed? Why does cognitive behavioral therapy (CBT) work as well as anti-depressants? Why are the same classes of drugs prescribed for different types of mental illness?

I’m deeply grateful to psychiatry and the efforts of many professionals (including my daughter and my deceased father-in-law) to alleviate pain and suffering. I have been psychotically manic three times in my life. Since I was first prescribed psych meds, in 1995, I have only been severely manic one time, when I stopped taking them (against medical advice). Much of what I have accomplished in my life since 1995 would not have been possible without them.

I highly recommend Mind Fixers by Anne Harrington. And I’d love to hear what you think about it.

St. Davids

I’ve always loved the name of St. Davids in Radnor Township, Pennsylvania (outside of Philly). When my parents and sister came for my graduation from Bryn Mawr, they stayed at St. Davids Inn. Many of the original European settlers were Welsh and they named their church for the patron saint of Wales.

I suppose that’s why the tears sprang to my eyes as I drove past the Battlegreen in Lexington a few hours ago listening to “Ar Hyd y Nos” (“All Through the Night”), the Welsh lullaby we’d just sung as a women’s chorus at church. It’s another Christmas season and my David won’t be visiting.

I find I’ve developed different approaches to talking about my children to newly-met friends. I remember flying west a few months after David’s death. I didn’t mention my children; I had no interest in the role of the mourning mother. Then there was the phase where I’d describe my kids in a way to obfuscate their numbers: “We’ve got a few in New York, one in Massachusetts, and the rest are out west.” But sometime in the last year, I’ve wanted to talk about David. I want to remember him and let new friends know about him, about his existence in our lives.

Sometimes I hesitate, concerned that the other person, hearing about David’s death for the first time, suffers more in hearing than I do in telling. I talk about David without anguish, but I don’t want to cause distress. Do I also worry that I seem heartless and unfeeling in my delivery?

I had lunch with my good friend, Christy, the other day, and I talked about David. She asked if it was painful, talking about him. No, it’s not. In fact, I want to talk about him, keep his memory alive.

Five days after David’s death, we all packed up and went to a rented house in the Catskills. We’d planned our reunion for the customary third week in August, but didn’t know whether or not we’d use the house, since David was so sick. But he died and we used the trip as a time to be together for a week in new surroundings.

As I sat at the kitchen table, looking out a large picture window towards a forested hill, I made a chart for meal planning. Jim, Mary, R’el, Peter, Matt… A bottomless chasm gaped before me, and I struggled to keep from plummeting. For nearly twenty-six years, David had always been between Matt and Annie. I skirted that chasm, with varying success for a long time. Then I discovered I could switch the order of Annie and Sam, but was always distracted from the conversation, nervously counting and re-counting in my head, feeling that I was missing someone. The other day I used my five fingers to count my kids and and wondered that it took over four years to discover the method. But my heart resists fitting my children on one hand. I rebel. I have six children. I always will.

Piano Lessons

Lest you think I’ve been perfect in my self-improvement this week: I haven’t logged my food on MyFitnessPal all week. It’s an exercise in imperfection. MyFitnessPal tracks my recording “streak”: how many consecutive days I’ve logged my food and completed my diary. In the past, to maintain my streak of over 100 days, I’ve lied, just putting in a general calorie count so I could "complete" the day’s diary. But last week I decided that was silly. No one is checking up on me, and is a streak meaningful if I’ve fibbed about it?

So, my streak today will be two days. I’m not overeating, which is the main point, right?

I must be on a self-improvement jag. Last week I decided to start up my piano lessons again. My good friend and piano teacher, Cami, started a major house renovation two years ago and took a break from teaching. Since her house project finished, I’ve felt like I haven’t had time to practice, but decided that signing up for lessons was the way to start again. I had my first lesson last Monday and when I got home, I dropped my music book bag by the door. Three days ago I picked it back up to take it to my second lesson. Yup! My music didn’t even make it into the piano. I wanted to cancel my second lesson, since I wasn’t prepared, but remembered something Matt suggested years ago, when I started taking lessons the first time. I resisted starting, worried that I wouldn't practice and would waste the lesson money. He asked if I could consider the lessons as the full musical experience. My teacher at the time said she had adult students using just that strategy: their progress was slow but perceptible.

When I admitted to Cami that I hadn’t practiced, she said with glee, “Practice as the lesson. Sometimes those are the best.” We had a great session and talked about some strategies to get me to the piano between lessons.

Cami suggested leaving a music book open on the piano, so it is easy to sit down and play for a few minutes. And to plan to do one part of the lesson on one day. Both of those seem really tailored to me. Getting my books out of the bag is a barrier. And I’ve always thought I had to go through the whole lesson in order: scales, exercises, piano piece, hymn. That daunting list keeps me from starting. So what if scales are ‘supposed to’ be to warm up my fingers. Better to work on a piece than do nothing. (Sounds like my dust mopping all over again.)

One reason I resist taking lessons, if I’m not practicing at home, is the memory from my high school days. I played viola and most weeks didn’t practice at all at home. I was very good at sight-reading, so the lessons weren’t a complete disaster. Now I wonder, for the first time, did Dr. Scott know? He never said anything, but he was a very mild, shy, and non-confrontational kind of guy. I did improve, through my weekly lesson.

I resist repeating that method. I'm embarrassed by my history. Now, in my perfectionism, I find the easiest course is just to give up lessons rather than face my choices. The best way to avoid a repetition of the viola experience is to actually practice during the week. Will it be a priority this week?

Phyz Ed

My strongest memory of junior-high-school gym (physical education) is standing in the green grass of the softball outfield with a baseball glove on my right hand. I watched the batter, fervently hoping she wouldn’t hit the ball anywhere near me. I was a below-average softball player and my focus was on avoiding making a fool of myself and angering my teammates. We chose our own positions and right field was mine. The majority of our class were right-handed, who tend to hit into left field, so right field was the plum position for the non-athletic.

When I was about sixteen, my mom suggested I take fencing lessons at the Westfield YMCA. I bought a left-handed foil as well as a mask and white padded jacket. It was a small class. Doug, who lived one town over, bought a sportscar our senior year and he let me drive it once, teaching me how to use the stick shift. Then we lay in the grass of my front yard and talked as the stars came out. I haven't fenced in years, but recently I've impresssed my six-year-old grandson, Andrew, with my swordplay.

In college I fell in love with archery. We traveled in a white van to nearby schools to compete in intermurals. My coach had a habit of saying, “Good girl!” whenever one of us did something well. As a child of the early seventies and a subscriber to Ms Magazine, I knew that I should resist being called a girl at age nineteen, but I soaked it up. I felt her love and great caring. She wanted all the best for me.

In the late eighties, I bought a Kathy Smith aerobics video, washed out two empty one-gallon cooking-oil bottles, and filled them with water to use as hand weights. Then I filled two old sox with rolls of pennies for ankle weights. I got pretty good at the routine, then did it off and on, and now haven't done it for a long time.

Now in my sixties, I’ve noticed my arms are thinner and weaker and I need to huff and puff when climbing outdoor stairs. I used to cart 50-lb. bags of flour, sugar, and oats into the house; now 25 lbs. are a challenge. I would occasionally try to start an exercise habit, but between boredom and busyness, it never stuck.

Two months ago I decided to try it again. I went online to find a routine and some instruction on how to do exercises correctly. I discovered a website that seemed custom-made for me. Nerd Fitness Academy (this isn’t a commercial, just a report of my experience) offered just what I was looking for: a graded progression of exercises complete with instructional videos. And there's fun: the academy is structured like a video game. I chose a character and wrote a story about myself. I get XPs for my accomplishments: calendaring my first week of workouts, getting a ‘dream team’ to report my progress to. When I want to level up to a fresh, harder workout, I do a boss battle to defeat the latest enemy: General DOMS (delayed-onset muscular soreness) was the first.

I’ve only missed a handful of my thrice weekly workouts: I’m taking it seriously. I email my 'dream team' with my progress. And I’ve begun to see results. I can do more knee push-ups (what we used to call girl push-ups) and balance longer on one leg.

Steve Kamb, creator of Nerd Fitness, counseled me to expunge “I don’t have time” and replace it with “It’s not a priority.” Priorities aren’t what we say, but what we do.

I read this idea three weeks ago and it is slowly changing me. I look more deeply into how I’m spending my time. Emergencies arise, but with my new thought: is this a priority? I can move forward with my life. I missed a workout while travelling. Chatting with friends and relatives who live far away became my priority over the workout. But there are choices I make every day that bear scrutiny if I'm serious about my stated priorities.

My Melting Heart

We last saw Eliza at Christmas time, when she was 13 months old. At 21 months old, she is bubbly, bouncy, and verbal. When she first saw me last week and said, “Hi, Oma!” in a high and clear soprano voice, my heart melted.

We had our annual Summer Retreat: a week dedicated to our immediate family. Eliza won my heart; Andrew, age 6, and Victoria, just turned 4, already had. Several months ago, an older friend of mine said, "Grandchildren just melt your heart." I agreed that grandchildren are wonderful (“If I’d known grandkids were so much fun, I would have started with them” quips a tee shirt), but this week I experienced what she was expressing on a deep level. It’s an astonishing thing, to be accepted fully and without reservation by a tiny human being.

I love Victoria and Andrew; our relationships are more complex, in good ways. We can tell jokes and tease and talk about how things work. Andrew is teaching me how to play Pokemon, a game I ignored when his uncle was young and enthusiastic about it. Victoria and I play with kinetic sand and read stories.

Eliza is endearing as only a one-year-old can be. The freshness, the little personality in a pint-sized body: every encounter is magical.

When Victoria was this age, I visited them in New York. She returned from an afternoon doctor’s appointment and came into the living room; she saw me and ran to me, arms outstretched. The love of a child is deeply healing. The love of three is beyond measure.

Hearing aid (singular)

A dozen days ago I took a leap and bought a hearing aid at Costco. Yes, singular. Since high school, my left ear hasn’t heard as well as my right. It has gradually gotten worse. Three years ago I had mild loss; now it is moderate. When I told my daughter, R’el, that I was getting just one, she said, “Classic under-buyer”, the terminology Gretchen Rubin uses in describing personal styles and preferences. Yup, that’s me. (Though I just looked at her Over-buyer/Under-buyer Quiz and she doesn't describe me at all: I have a basement full of storage items: soap, shaving cream, food: things I use; no late-night trips to the store for me. I do consciously put off purchases and cut corners, like buying just one hearing aid.

After the fitting, as I walked through Costco, the aisles seemed noisier and more crowded, though they weren't. As my brain adjusts to the new input, I notice it less and less.

In Portsmouth, NH, after we passed a couple on the sidewalk, I could still hear their voices deep in my ear. I felt like a spy with a covert listening device. Last week in the temple, I could hear a whispered conversation behind me. I turned around, expecting they were just behind my chair, but they were across the large room. It felt like eavesdropping.

Buying a hearing aid is a rite of passage. I’m definitely in my  60s now. I’ve worn trifocals for about 12 years and didn’t feel any reluctance to start, in fact, I asked for them: being able to read anything instantly, without searching for my ‘cheaters’ and getting them on my nose, is more important than looking young. 

Trifocals don’t make me feel old; a hearing aid does. Maybe that’s part of the reason I only got one: makes me half as old, right? I discovered that my hairstyle makes the aid is nearly invisible (though I’m blowing my cover now, aren’t I?). Completely accidental, but I’m quite pleased. I will probably ask my hairdresser to keep the style.

When a nurse sticks an otoscope in my ear, I have to concentrate on relaxation breathing. I've heard some people enjoy the sensation (do you?), but for me it’s barely tolerable. The worst part of getting fitted was that the audiologist had to put thin probe tube in my ear to verify the effectiveness of the aid. I made it worse by cringing: she had to adjust it three times.

So much of interpersonal communication is by voice: I have felt isolation as I've lost my hearing. I’m grateful for the improvement.

Four Years On

A friend of mine, Cami, taught a Relief Society class (women’s group at church) a few weeks ago and sent out a quotation she found on the internet: an old-timer talking about grief. I was organizing my emails and wanted to copy the quotation to save it on my laptop. Where to save it? I searched for grief and found a spreadsheet with a series of questions that Jim, Annie, and I answered in February of 2016: six months after David died. I found no surprises, but one thing stuck out:

Ever since we came back to Lexington in May 2014 I have carried a BOX of tissue in my church bag. I'm always prepared for unplanned tears. David's death is another motivation to living my life more consciously. However, it's hard to get out of bed in the morning and hard to get things accomplished, so that's a frustration.

When did I stop carrying a box of tissue in my church bag every Sunday? Six months ago? Three? The box had gotten pretty banged up and I hardly used it, but for the first three years I felt comforted having it nearby.

And when did it become easier to get out of bed? I suppose it was gradual. I’m in a much ‘better’ place now. What does that mean? We Americans are so afraid of painful emotion. I’m grateful for the grief, even the intense grief. I want to feel; I want to miss David.

And I do miss him. Just an hour ago I looked up at the pencil drawing of him, smiling and ‘extremely presentable’. It’s becoming obvious that the picture isn’t aging and his siblings and cohorts are. I’m becoming one of those weird grieving mothers with the old photo of a long-dead child. He’s not long-dead yet, but it’s coming.

Doing further surveying of my computer files on grief, I found a document I made of bereavement support groups. During the last two weeks of his life, David received care from Good Shepherd Hospice. Part of their service is to provide grief counseling support to family members for 13 months after the death. Jaye was our counselor. At the time of his death, that seemed very generous and more than adequate. However:

18 Jul 2016. I’m in a panic that the Good Shepherd Hospice grief counselling will be over in another 7 weeks. I have only been to see Jaye twice, but both of those were so significant. I’m going again. I wanted to go on the 11th monthiversary, but she has conferences on Tuesdays, so I’m going this Friday. Can I tell her I’m panicked, that I’m afraid of what Kimberly told me, that the second year is the worst? I hope I can. I hope I can be honest with her and find healing in the honesty. I hope she can help me navigate this unknown territory. It will remain unknown for a long time, for my whole life, but I hear it will get less intense. Life will get better.

Called Mt. Auburn Social Work asking about a bereavement support group. Left a message, while breaking down into tears and a squeaky voice. Apologized in the voicemail for the tears. “She will think I’m a basket case: it’s already been a year.”

Found A Compassionate Friend website and a monthly support group in Concord, 16 minutes away. “Well, if it’s only once a month, they must not expect you to be over it in 13 months.”

It’s hard not to distract myself. Hard to know whether it’s healthy. Hard to know who I can share this with.

Two days later I wrote:

I am feeling much calmer today. Maybe reading these grief books has been too intense; maybe it’s healthy; I just don’t know.

I’m glad I wrote this down. It’s hard to imagine now how panicked I was, how distraught and overwrought. That isn’t happening anymore.

Another document I found was a transcription of a voice memo I made a year ago, on the third anniversary of David’s death. I was bothered that I couldn’t keep in mind whether it was three years or four. And how I felt that

as a grieving mother I should be crying and I should be watching the time, and I should be aware that this is the anniversary of the last time he did this, the last of that.”

I remembered arranging the words from “If You Could Hie to Kolob” to Ralph Vaughan Williams' Five Variants of Dives and Lazarus while washing dishes when David was sick. I had fantasized about singing it in public and wondered if I could ever sing without tears.

In early grief it feels like it’s never going to change, that it’s always going to be excruciatingly raw. Even though people tell you it won’t be, you can’t imagine it. That’s the cognitive distortion of strong emotion. It’s one that I wouldn’t try to talk anyone out of. I would say, “in my experience”, there has been healing of the raw wound and hope they find comfort in that. Who can predict the emotional life of another person?

So, as the fourth anniversary of David’s death approaches, I can say that there has been healing. I miss David and am terribly sad that he is missing out on the mortal experience of adulthood. But I’m not overwhelmed with grief and sadness.

Another entry I made in July 2016, 11 months after David’s death:

So, how will I breathe as Victoria lives her life forward while all there is of David’s life is to live it backward? Is this why I can’t go visit them? Is it the truth I guessed at earlier in this 11-month journey, that Victoria’s birthdays will surpass David’s death anniversaries? Part of me sees that as inevitable, as I did intellectually when I thought of it months ago, but a deep emotion wells up inside of me that it’s not fair, that there could have been both: Victoria and David growing older together.

Now, with three more years past, I can breathe, and freely. Seeing Victoria grow into a loving, curious, vivacious four-year-old doesn’t make me sad; it fills me with deep joy. Of course, I wish David could be alive and enjoy the niece he never met. But I'm not in debilitating agony. What I can do to honor David is to live my life fully and be fully present in the lives of his beloved nieces and nephew, our grandchildren.

The Zaandam

As I gazed down at the St. Lawrence River from the Greyhound bus, I saw a white and blue cruise ship moving slowly away from us. Painted on the stern, I could just make out the name: Zaandam. For the first time in my life, I longed to be on a cruise ship.

In 1989, my mom bought a neat one-bedroom condo on a beach in St. Croix while my dad was scuba diving from a boat offshore. She later bought the unit above and my parents frequently invited their children and relatives to share their piece of the Virgin Islands. When Sam was one and R’el ten, they invited our whole family. The kids and I spent three weeks in paradise; Jim joined us for the final week. Their backyard was a beach and reef. We snorkeled and had hermit crab races, visited Whim Plantation and enjoyed freshly-fried johnnycakes.

After that trip, I went down every February. I loved mile-long swims along the shore, scuba diving among the coral reefs, and having dinner with my parents. A mile from the condo was Frederiksted and the pier where the cruise ships docked. We would see the tourists scurry off the boat for their shore time. Spending 17 hours each day on a boring ship for just a few hours on shore had no appeal. I was content with visiting the same reefs (and there were several) and loved staying on the same island all week.

An Alaska cruise appealed to me. My dad and grandpa, discerning world-travelers, went on one and thoroughly enjoyed it. About eight years ago Jim and I did the same. The glaciers were magnificent, Anchorage's dusk at 11 p.m. unworldly.

When Jim’s mom suggested a New England and Canada cruise for all her children and spouses, I looked forward to it: I’d never been to Nova Scotia and love Quebec City. The cruise ship would simply be the vessel to get me there: easier than driving. We boarded in Boston and headed north to Maine and eastern Canada: Nova Scotia, Prince Edward Island, and Quebec. After a day in Montreal, Jim and I would return home by bus though Vermont and New Hampshire.

But as we rode over the Cartier Bridge in Montreal, I found myself wistfully watching the Zaandam as it glided back towards Quebec City, with a fresh load of passengers. It had been our home for seven days. Every evening at 5:15 p.m. Robert, our head waiter, had cheerfully greeted us and taken our orders; there was a different menu each night. George, the wine steward, gave up asking for our wine order and quietly removed the long-stemmed glasses the staff had set at our places. Jim and I soaked up the showtunes and sing-alongs with Jamm the piano man: he knows many hundreds of songs. We listened to a jazz quartet from Greece. I laughed at the ventriloquist, Mike Robinson, and was convinced there were two distinct personalities on stage, even though Terence arrived and left the stage in a suitcase. (My favorite joke from Mike Robinson (there are so many to choose from): Gaming, that’s the preferred term for gambling. Gambling suggests you might win.)

I grew attached to the ship in a way I never had to a hotel. Of course, I’ve never stayed in a first-rate hotel for a week: I usually choose a hotel for low price. The ship had rooms to explore. It took me days to go directly and confidently to the dining room, and a few more to understand where the Mix piano bar was. To the end, I was still guessing how to find the Hudson Room and the main stage and needing to check with the ‘you are here’ map to confirm which staircase I was at. Every evening after dinner, we'd find a creature folded from a large towel with googly eyes in our stateroom. One evening it was a monkey hanging from a skirt hanger; another it was a dear little mouse on our couch.

What was that wistful feeling? The feeling an only child might have on acquiring a younger sibling. I thought the Zaandam was mine. Who knew that two hours after I locked my stateroom and rolled my purple carry-on to the gangway there would be 1400 people waiting to board and take our place?

Pioneer Trek

Jim and I went on a Pioneer Trek with about 70 of the youth of our church. It was a reenactment of journeys nearly three thousand Latter-day Saints took across Iowa, Nebraska, and Wyoming to the Salt Lake Valley, from the years 1856 to 1860. They packed their belongings in a handcart and walked over a thousand miles. Our teenagers were organized into 7 ‘families,’ each with adult leaders as Ma and Pa. Over three days we trekked 15 miles through the woods of New Hampshire: not quite the Great Plains, but challenging.

I often walk 4-5 miles in a day, so I was actually disappointed that it was only 15 miles total: I had misunderstood it to be 15 miles a day. I did worry about sleeping on the ground: it’s been years. But we bought backpacking air mattresses, which are very lightweight and inflate in 15 breaths.

It was a fun date for Jim and me. As the company's grandma, I wasn't responsible for anything. Except for a slight rain Saturday morning, the weather was great and the rail-trail easy to follow.

Back home on Sunday, two of the teenagers reported to our congregation. One had been quite skeptical of the plan. He named it ‘cruel inefficiency’ to pull a loaded oaken handcart over dirt and rocky trails for three days. But in the end he was glad he’d done it.

For both of them, and for me, it heightened our appreciation of our pioneers. Everyone who has gone before is a pioneer, not only my great-grandfather James Farrell, who walked to western Nebraska and built a sod house, or my great-grandparents Bruesch, who came as children to Wisconsin from Prussia and homesteaded a wheat farm in Highwood, Montana, but my grandparents and my parents. Every generation has its own challenges and forges the way for the rising generation.

I’m grateful to have shared the trek experience with Jim and new-found friends. I’m grateful to live in beautiful New England. And I’m grateful for my parents, grandparents, and all pioneers, for the sacrifices they made to give me a better life.

Janet Haas 1960-2019

A musical memorial service was held at Lexington High School for Janet Haas, an exemplary music teacher and accomplished musician, who collapsed in school in early December and was rushed to the hospital. She died a month later of a brain tumor. She was born in 1960 and was planning to retire in June. As one colleague said, “This should have been her retirement celebration.”

The service included a short video and beautiful music, played by her music students, from fourth graders through high schoolers, alumni, and colleagues. It including “Nimrod,” from the Enigma Variations by Edward Elgar, “Over the Rainbow,” played by a string orchestra of elementary students, and Samuel Barber’s Adagio for Strings. The Adagio is a great favorite of mine. It accompanies the David Whyte poem, "Well of Grief" that I wrote about 17 months after David died.

I hardly knew Janet Haas. An avid garage sale customer, I once found a violin for $25. Senior year, our daughter R’el, who played the flute and sang, decided to take it up and joined Mrs. Haas’ intermediate orchestra. To me she seemed a stern taskmaster: at one concert she announced that they would not be playing one of the pieces: it wasn’t ready.

I was pleased to hear of her gentler side, the extra attention she gave students, her interest in early music, figure skating, and gardening. The video showed a home movie clip of her smiling and patiently teaching a little boy how to move on figure skates.

According to Lexington Wicked Local, when Mrs. Haas began teaching in Lexington the high school orchestra had 17 string students. Thirty-one years later there are nearly 200 string players in three orchestras.

The announcement in Lexington Wicked Local reads like the obituary of Doc Graham (Field of Dreams), full of love and admiration for a life well lived:

Haas is remembered not only as a brilliant musician, teacher and colleague but also as a woman of the highest professional, personal, and musical integrity. She deeply wanted her students to experience the fullest passion for music. When she saw a need among her students or in a program she quietly rose to address that need. If a student wanted to learn to play bass at a school that was not in her schedule she would find a way to fit them in. She was a living example to her students of commitment, honesty and perseverance. Praise from Ms. Haas was a precious gift that meant her students had done something special and important.

After the service, we spoke to some of the other music teachers. Mr. Leonard, the music director who worked with us when we donated some of David's insurance money to buy new choral risers, pointed out John, with a bushy red beard, clearing the stage. He said that John was very careful handling the risers and made sure the brass plaques with David's name on them always faced out. Jim and I went up on stage to thank John for his care. We shook hands. It was a sweet moment.

David played the clarinet. He sat near the back of the section, stage right. I can see him intently blowing into the clarinet, or chuckling with another student. He graduated in 2006, thirteen years ago.

It was a bittersweet afternoon.

Carved in Granite

Peter and Xiomara, with 6-year-old Andrew and nearly-4-year-old Victoria, visited last weekend. On Saturday we went to Bedford Farms, a local ice cream stand. Our congregation, the Arlington Ward, always frequents Kimball Farm in Carlisle, but I’ve heard good things about Bedford Farms and it is nearly 4 miles closer to our house. (The ice cream was delicious. I had a blueberry swirl. Jim had outstanding ginger.)

On the way to ice cream, we passed the cemetery, and Jim turned in. Andrew wanted to know what it was and I explained it in simple terms.

We drove to David's grave and I knelt at the stone with Victoria and Andrew. As I read aloud:

I suddenly realized that Victoria would recognize it as her birthday. Victoria was born at 11:40 p.m., 40 minutes after David died. She will always share that date with him. I wasn't prepared to face that fact with her on the way to ice cream. But for Victoria it was simply a curiosity, that her birthday was on a stone in the grassy ground. Death isn’t tinged with sadness, horror, and longing for her. It’s just a fact: two things happened on the same date, both of them theoretical and mysterious to my three-year-old granddaughter.

Two months after David died, I wrote:

I’m sitting on the soft brown couch in Riverdale (the Bronx), listening to the Mormon Tabernacle Choir, little Victoria kicking her legs and waving her arms. Andrew is munching on Lucky Charms in between kissing his baby sister.

Victoria was born 40 minutes after David died. She’s now two months old. It will always be easy to remember the date. Will I remember it more for the death or the life? The life I think. Every year Victoria will change; she’ll have her first birthday, her fifth, her sixteenth. David’s date will be static, slowly fading into the past, but never forgotten.

And now, nearly four years on, I start having the answer to the question I posed. Both events will always be significant; any mention of that date will immediately bring to mind two events. And, yes, Victoria will change constantly and her birthday will have new meaning each year as she grows up. But we won't forget David. New experiences surround us every day, but the fact of his life will never fade. We continue to have six children.


October 12, 2019 will be the fifth year that we host the Massachusetts General Hospital (MGH) bloodmobile for a blood drive in memory of David, who received many transfusions from MGH in the 15 month course of his treatment there. That has become, by design, the focus of our remembrance of David: the month of his birthday. And on August 12, 2019, Jim and I will be in the Bronx, with a homemade strawberry birthday cake for Victoria.

Haverford College Class of 2014

Spoleto: chamber music, Shakespeare’s Pericles, a Cuban big band, and an all-male dance company of Algerian, Israeli, and Palestinian street dancers. We drove the nearly 1000 miles down to Charleston in one day, stopping only for gas and a short supper. We took a leisurely four days to drive home, stopping for lunch with good friends in Richmond, and supper and an overnight stay at my brother Steve’s in Bethesda. Friday and Saturday we were at Haverford College, Bryn Mawr College (a mile away), Philly, and then drove to Manhattan for a vegan meal with R'el. We spent Saturday evening and Sunday morning with Peter and his family, then headed home.

We stopped at Haverford College for David’s fifth college reunion. At 23, he was the oldest freshman at Haverford in 2010. We know this because he told us, with a chuckle, that the dean, at a meeting of the whole freshman class, had listed interesting facts about the incoming class (how many international students, etc.). The youngest student was 16, the oldest 23. He studied Chinese and Spanish and biology and chemistry. Then he joined the Army in 2011, became a medic, and got leukemia in 2014, a few months before his Haverford class graduated.

Last year, at my Bryn Mawr College 40th reunion, Jim conceived a plan of attending David’s 5th reunion and having a short memorial for him. Jon Schweitzer-Lamme, chair of the Haverford Class of 2014 reunion committee, knew David, it turned out, and was happy to organize it.

Stacie Giles, my dear friend in Richmond, and her husband, Frank, came too. She was going to her own 40th reunion at Bryn Mawr. Stacie's short-story murder mystery was recently published in an anthology, Deadly Southern Charm.

We arrived Friday evening and went out to dinner with Natalie, a good friend of David’s at Haverford. They studied Chinese and Spanish together and annoyed/amused their friends by speaking Chinspanglish. David was a very private person and I don’t recall him ever talking about his friends. We first knew of Natalie when she walked up our driveway to attend the visiting hours in our home before David’s funeral. She and David had emailed all through his illness and she followed my blog. It was a bold thing for her to come up from New York unannounced, but I was thrilled to learn of her friendship and connection to David and immediately invited her to sit with our family at the funeral.

We spent dinner talking about David and about her present life. Then we drove to Haverford and sat under a big reunion tent between Founders Hall and the old Ryan gym, where I used to practice fencing with the Haverford team. (Bryn Mawr didn’t offer fencing. I had learned it at the YMCA in high school. Since Haverford was all-men at the time, I couldn’t compete with the team  at meets, but occasionally got to compete unofficially with women from other colleges.)

The memorial was simple and intimate. Nine classmates stood in a circle near a young tree on Founders Green and talked about David. One woman remembered that David wouldn’t laugh at her jokes. They remembered being surprised that he was the famous 23-year-old: he didn't look that old.

After that sweet meeting, we took a short tour of Barclay first floor. David lived in room 102, the corner dorm room facing Founders Hall. Natalie lived on the same floor. I have fond memories of Barclay: some of my favorite Class of '78 Haverfordians lived in Barclay during our freshman year.

I wasn’t sure how the memorial would go, and how I’d feel about it. Would it be awkward, being the older, bereaved parents of a young man who had only attended Haverford one year? Would anyone but Natalie and Jon recognize David’s name? But it was a sweet experience. Bittersweet, to see these charming, promising young adults living interesting lives and returning to see college friends and roam the campus.

This week, all of eastern Massachusetts is resplendent with pink-lavender rhododendron shrubs. By far the most abundant color of rhododendrons right now, it blooms before the whites, reds, pinks, and oranges. The blessing of a cool (no, cold), rainy spring is that the flowering shrubs bloom for extended periods. The rhododendrons are a towering mass of bouquets of blossoms. Some are fifteen feet tall. It's a pleasure to drive around and enjoy them.

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?

Spring

Last week I learned that Lois Earnshaw unexpectedly died on April 19. She stumbled and struck her head, but didn't seem seriously hurt. However, she gradually lost consciousness, was taken to the hospital, and died. She was 89 years old, but in good health, so it is quite a shock.

I first met Lois when we moved to New Hampshire; I was 28 years old. She had children about our age. She was talented and articulate and self-confident. A role model.

What is life for? To help each other through, for sure. To find worthwhile things to do. And we’re meant to enjoy our life, to appreciate the people and the beauty around us.

Four days ago, as I was driving into Lexington Center, I saw a hedge of brilliant purple azalea and then a tree with cascading white blossoms. A few days later, I passed under a row of flowering trees and remembered walking among the pink clouds of cherry blossoms in Washington the first spring that David was sick and in the hospital. It's a magical memory from a dark time. Since Patriots' Day, all around us, tree branches are tinged with many shades of delicate green. The trees haven't leafed out, but the promise is there. We don’t have the profusion of blooms southern cities like Washington, D.C. have, but the contrast between the winter bareness and the flowering shrubs and budding trees delights the heart.

Making the bed

I missed my blog deadline last week. The third Monday in April is a state holiday in Massachusetts and Maine, to commemorate the Battles of Lexington and Concord. Three-tenths of a mile from our house is the Lexington Battlegreen, where His Majesty’s troops meet the local militia of Lexington. Each year the battle is re-enacted. We open our acre yard for friends, and friends of friends, and anyone who has the least connection to us, for parking. One year we parked 60 cars, and no cars were blocked. This year the forecasted rain lowered our attendance: we parked only 30 cars and hosted about 100 people for breakfast.

Yesterday I walked into our guestroom and had a magical experience. The bed was so neatly made I thought I had stepped into a five-star hotel. The cotton comforter was as smooth as satin. Jim’s cousin was our guest Friday night. He’s a former Air Force pilot and it shows. I was touched by the care he took in the simple act of making the bed.

As I sit here writing, a “Christmas” cactus that decided to bloom for Easter gracefully bends towards my laptop screen. The blossoms are an improbably rich pink. The purple hyacinth I picked this morning perfume the kitchen.

Indecision

Before David got leukemia, I had a habit of driving down to the New Jersey/New York area regularly. I would make a loop, staying in the Bronx with Peter, Xiomara, and Andrew, then driving to New Jersey to be with my parents. On my way back home, I’d stop by and see my brother, Mike in his residential facility. With David’s illness, those trips stopped. Sometime after his death, I resumed the trips. Mom and Dad had both died, so the loop changed: I’d visit Mike in New Jersey, feed him supper, drive to Manhattan to have supper with R’el, then onto the Bronx to spend a few days with Peter, Xiomara, and the kids.

Mike died in January, a week after I had visited him in his New Jersey nursing home and made the loop. In February, R’el and Peter’s family went to Florida for February vacation, so I took the month off. Next week, Jim and I are going to take a two-day trip to the Bronx. My first solo trip since Mike's death will be in May. I’ve been paralyzed about it. It should make things simpler, to drop the trip to New Jersey. But it makes it more complicated emotionally.

Isn’t it an odd thing. Much like my indecision about which support group to attend, or whether to just go home, eight days after Mike's death, the question of how exactly to do these trips, the logistics, the when and where, overwhelm me. I emailed R’el with my dilemma and she cheerfully wrote back, suggesting travel options and offering to look into anything I needed help with. All of which I could have easily researched myself, but which seemed beyond my capacity.

A friend of mine at Compassionate Friends, my bereaved parents’ support group, said she thought she’d been holding it together until she looked at a restaurant menu and realized she couldn’t decide what to order. Yes, it’s exactly like that.

For our monthly family book group, we read and discussed Remains of the Day by Kazuo Ishiguro. Jim and I also watched the excellent 1993 film, starring Anthony Hopkins and Emma Thompson. The main character, Stevens, is a butler in a great English country house in the 1920s to 1950s. He is extremely proper and reserved: he values “dignity” above all else, including human relationships. It’s a heartbreaking story. At times of great emotional crisis, all Stevens can express, even to himself, is that he is ‘tired’. That’s how his emotions find expression. For me, indecision is the expression of my grief.

Envy

Last Sunday Jim and I heard Terryl Givens speak at church in Cambridge. He’s a professor of English at the University of Richmond and a prolific writer. Listening to him speak, it's obvious he is also a prodigious reader. Jim took careful notes, which I transcribed two nights ago.

I left the talk feeling the joy of scholarship. I fantasized of reading every author and thinker that he mentioned, of studying New Testament Greek, of understanding philosophy and theology as well as he. It was pure fantasy, which I realized even as I aspired. And I didn’t descend into envy: I consciously chose to celebrate his accomplishments and appreciate the enrichment he gave me through his lifetime of study and thinking. He possesses an extraordinary intellect: I do not. I want very much to respect him for that and be grateful for his generosity in sharing his learning and insights.

Our congregational choir is rehearsing for our Easter program April 21. Tess, our director, is a consummate musician (she plays harp professionally) and has an ambitious program in mind, including a chorale from Bach’s St. Matthew’s Passion. Last week I practiced my part and even listened to the whole piece on YouTube. I am not at all familiar with it: my experience has been with orchestral and instrumental works more than choral.

Last Sunday’s rehearsal was painful. There were only about eight of us, including just two altos. Although I had mastered the first page, much of the rest was beyond my grasp and I muddled through. Later in the day, at home, I practiced my part some more. As I thought of the rehearsal, I realized that other singers are much more familiar with the work as a whole and with the chorale specifically. In my new-found mode, I found myself appreciating the musical studies they have made and recognizing that it blesses my world.

 And what is envy? Part of it is embarrassment and inadequacy. It’s a painful awareness of what I don’t have and haven’t accomplished. How much more generous, and pleasant, to be delighted with the gifts of others around me.

As I started this blog post, I realized I've written about this nearly a year ago. I'm swimming!

Anxiety

Saturday our Relief Society, the women’s organization at church, held a brunch after a morning at the temple. I arrived a bit later than others and as I walked through the parking lot I felt a low-grade anxiety. What if there were no empty seats at the tables? Would I have to sit alone at an empty table? I assured myself that wouldn’t happen, but when I entered the room, sure enough, three tables were full, with an empty fourth table.

Someone saw me approach and waved me over. “Pull up a chair, we’ll move over.” I felt great relief.

It might surprise people that I suffer any social anxiety. I’ve been an active member of this congregation for 27 years and it feels like home: certainly I should feel relaxed and confident in entering a room for a social event.

But it takes me right back to seventh grade: the first year at Thomas Alva Edison Junior High in Westfield, New Jersey. At my very first lunch hour, I arrived at the cafeteria after my friends and found to my horror that all the tables of seventh graders were full. The cafeteria monitors did not allow more than six to a table. I was assigned a table with five ninth-graders. It’s hard to say who was more put out: me or them, but they expressed their disgust openly. They called me Gertrude (in tones that made it clear that only fat and ugly old ladies and former Nazis possessed that name) and made my lunchtime miserable.

Perhaps a more confident girl would take it in stride and win them over, but I was not that girl. My resolution was to keep my head down, literally, eat as fast as I could, and rush out to the school yard to wait for my friends to finish eating.

How do we get over the hurts of years past? When two more women arrived after me, I quickly got up and helped form the fourth table. Be part of the solution.

They're really saying I love you

Saturday Jim and I attended Linda Huppi's memorial service. We knew Linda from our church congregation. She was soft-spoken and unassuming, but a force to be reckoned with musically. For many years she accompanied musicians on the piano and the congregation on the organ, as well as serving in the church organizations for children, youth, and adults. Every year for thirty years she wrote and organized both a Christmas program and a Spring Sing concert. She even wrote her own memorial service, beginning with prelude music by Sounds of Grace Hospice Choir she belonged to, filled with musical offerings, and ending with a trombone solo, “What a Wonderful World”, which became a favorite of mine when we sang it for a Spring Sing several years ago:

I see friends shaking hands, saying how do you do,
They're really saying I love you.

Such a sweet thought. And just like Linda. All her quiet service was her way of saying to everyone she met, “I love you.”

Linda was just twelve years older than me. My walking buddy, Susanne, remarked this week, “Our children are going to weddings; we go to funerals.” Just two weeks ago, while I was in California, a friend of mine, just five years older than me, died of a sudden heart attack.

But life isn’t completely dreary. I was able to spend time in sunny California with my sister, her husband, and dear little Eliza while her parents took a vacation in London and Edinburgh. Although spring flowers and green leaves are still many weeks away, daylight savings time makes the days seem suddenly longer and full of light.

There's plenty of sadness, but it is a wonderful world.

SWIM! part two

While scrolling through my blogposts, I noticed Stop Whining! and SWIM! (Stop Whining Instantly, Mary!), which I wrote last April and May. So how am I doing on my campaign? Last Spring, I’d been whining about my inability to read and retain information. Embracing audiobooks has helped me reenter the world of books. It’s still frustrating when I struggle to read, but I have a new avenue for information to enter.

A perennial challenge is my hand tremor. Markedly worse in my left hand (and I’m left-handed), I can’t keep my hand steady without support, can’t handle a spoon or a camera or a needle and thread (this from a woman who made her sister’s elaborate wedding dress.). I don’t have an exact date of onset, but, to the best of my knowledge, it developed after my second psychiatric hospitalization, sixteen years ago, when I was put on a new medication. I’ve asked psychiatrists and neurologists about it and tried various drugs, but nothing has helped. Since the med protects me against mania, and does that very well, I have felt I had no recourse.

I recently consulted a psychiatrist in Boston. He suggested a medication that would probably be effective against mania, could possibly be better for my brain, and might, just might, let my brain heal and diminish the tremor. It wouldn’t be immediate and there are no guarantees, but I’m excited to try. The change will take a few months: gradually taking more of the new medicine then tapering off the old. And then just waiting to see if there is any improvement.

It's scary to change medication. If it ain't broke, don't fix it. But this has been broken, for a long time. Wish me luck!

Tending Eliza

I spent all of last week at RootsTech, the largest family history conference in the world. I attended presentations from 8 a.m. into the evening and learned about immigration records, German surnames (my two grandmothers were German), maintaining research logs, and helping others with family history.

I thought I’d write this week, while tending 15-month-old Eliza in southern California. What was I thinking? I’m staying with my sister and her husband, which gives me some breaks now and again, but Eliza's favorite activity is climbing the staircase. She crawls up fine, but hasn't learned the art of gracefully descending and insists on walking down, so I hold her hand. There's no child-gate and it's her go-to area to roam. Since she lives three thousand miles away, it’s precious time to be with her, but I do wish her once-a-day nap was a bit longer. Today I made the mistake of taking a long stroller-walk at 10 a.m. She slept in the stroller and her nap was shortened by an hour. Tomorrow's forecast is for rain. Thursday's game plan? Take my stroller-walk after her noontime nap.

Black Armbands

A few mornings ago, I woke up and lazed in bed with my eyes shut. I’m not sure how awake I was. I just tried to feel comfortable in my skin. As I finally opened my eyes, I let them stare and was immediately reminded of seeing Michael in his bed at the nursing home, awake, eyes open, curled up on his left side, staring at his knees. I felt a kinship. I felt a peace that I hope Michael felt.

I want to be at peace.

I think I have to name this grief: that it has to be labelled, has to look a certain way. “I don’t know how I feel”, I keep saying. But I am feeling whatever I’m feeling. The label isn’t important.

A friend of Jim’s, commenting on David’s death three and a half years ago, said that in the 19th century, people were not expected to take on social obligations for a year after the death of a close family member. Wikipedia says British siblings worn mourning clothing for six months. Michael died less than a month ago. Maybe I need to get my psychological black armband on.

When I say, “I don’t know how I feel,” I think that if it doesn’t feel like sadness it doesn’t ‘count’. I can’t use it as an ‘excuse’ not to do something unless it has me doubled over in pain.


Carl emailed everyone a sketch for a stained glass design he is working on. It's three angels: Dad and Mom with a smaller, child angel between them: Michael. Carl  wondered what color to make Michael’s angel. Maggie reminded us that Mom made an afghan for Mike that was like Joseph's coat of many colors. She had made afghans for each of her children as they married and used the remnants for Mike's. It's wonderful symbolism: we each are a part of him, he's a part of each of us. Years ago I cross-stitched "Merry Christmas" in German: Frӧhliche Weihnachten, and gave it to Maggie. Since our last name is Hazen, I hung two stockings on each of the four Hs: green for Maggie's, purple for mine, brown and blue for Carl's, yellow for Timothy's, red for Steve's, a blue one for Mom, a red one for Dad. And a mix of all the colors for Michael's, to go between Maggie's and mine.

Yes, Mike was a part of each of us. He helped make us who we are.

Bobby Moses

I dreamt of Bobby Moses. His sparkling brown eyes smiled at me and I instantly exclaimed, “Bobby Moses!” I hadn’t seen Bobby Moses since I was in high school.

The summer after my brother Michael moved to Woodbridge State School, later named Woodbridge Developmental Center, I was 17 and couldn’t find a full-time summer job, just a part-time janitorial position at a local restaurant and bakery, Geiger’s. My mom, always a source of creative ideas, suggested I volunteer at Woodbridge. I liked to swim and got an assignment to help at the on-site swimming pool.

Early in the morning I’d clean toilets and vacuum the dining rooms, then I’d spend the afternoon with the Woodbridge residents at the pool.

Bobby Moses was a large young man, probably about twenty. He had a mischevious grin and a gregarious nature. His favorite activity was belly-flopping into the pool and splashing everyone who wasn’t paying attention to him. He had a long, ugly scar across his abdomen. I never asked him, but the head lifeguard said it was a gunshot wound. It was hard to imagine Bobby being in a brawl, he was so easy-going and sweet-tempered, but we had no details, just the fact of the scar. I loved calling his name. There is something wonderfully stirring about that name.

As I reminisce, I hear our snow-plower’s pickup truck rumble up the long drive and around the center tree. It looks like fun, swinging around the circle, slamming into the snowbanks he is creating. Hard to imagine the hot New Jersey sun beating down and the aroma of chlorine on my skin. And Bobby Moses.

Processing grief

Wednesday, Jan 30, 2019, eight days after Michael's death

I debated about whether to go to DBSA-Boston tonight. I left the Lynnfield Family History Center, where I volunteer, at 6 p.m.: plenty of time to make the 7 p.m. support group meeting. When I arrived home, I realized that it was Mill St Open Mic Night, so groups wouldn’t start till 8 p.m. At about 7, I got my coat on and went out the door. The wind was whipping snow onto the porch and the flag was flapping wildly, cracking like a whip. It was much colder than a half an hour before. So, I went back inside. Sat at my computer, then decided that I shouldn’t be a wimp. These are my friends: I should be there for them.

When I arrived, the last performing group was singing “House of the Rising Sun”. I leaned against a pillar, not wanting to commit to a chair. The group coordinator walked by and told me that G. was facilitating the Newcomers Group, which I often do. I thought about leaving, but at home I had decided that if I didn’t facilitate I should go to a group and talk about my weird state of mind. I was undecided. I thought I’d go to the Depression group: the Mania/Bipolar group can be pretty energetic and might not be the best place for a discussion of grief. I approached the room of the Depression group and saw a few empty seats, but hesitated. I turned around and walked toward the area where the Mania/Bipolar group was forming. There was a large square pillar between me and the circle of chairs, easy to hide behind, and I stood for a minute, uncertain of what I wanted to do. I turned around and walked toward the Depression room, but there were no longer any empty seats. I turned and walked towards the exit. Maybe I should just leave. But I drifted back toward the Mania/Bipolar group. Seeing friends around the circle, I decided to risk it.

At my check in, I said my younger brother had died last week and I just wasn’t sure what I felt. I couldn’t articulate it in a few words, so I said, I’d like some time after. That’s the protocol: check-ins are for a brief update, after which we can spend more time focusing on issues. The check-in continued, and then the facilitator asked me if I wanted to speak.

I said I wasn’t sure how I felt. Perhaps it was something about the fact that in the past 5 years my mom, then my dad, then my son died. Perhaps I was protecting myself from the pain. I wasn't having the double-over-in-pain reaction I'd had when my son died; I didn't want to have it again; it was awful.

T. said, give yourself time, lots of time. He said that when his mother died he didn’t feel anything at first. Several months later something reminded him of her and he cried for an hour.

I know one thing that complicates my feeling: I feel guilty that I’m free of the burden of visiting him every month.

In November I met a mother at church who’s young adult daughter had been killed in a bicycle accident. When I saw this mother, desperate and grief-stricken, I recognized that I am no longer in that desolate place. I fear that facing the grief of Michael’s death will send me back again.

Thursday, January 31, 2019

I’ve been in shock. I’m still in shock. T., my friend from DBSA, pointed this out to me after the meeting last night. And that’s exactly what it is. I’m in shock from my younger brother Michael dying. I’m also feeling the shock of his life. All those years of limits on him: physically being delayed in walking and talking, never being able to do the things we take for granted: middle school, high school, college. And then, after he came out of the state of constant seizure when he was 13, more limitations. I lost part of my brother that summer. And have been slowly, over 46 years, losing him further.

Tuesday, February 5, 2019

I just got home from Compassionate Friends, my support group for grieving parents and siblings. I told them about Michael and about my experience at DBSA. I've never been so indecisive about going to a group as I was last Wednesday. The facilitator could identify. She said she had felt, after her son died, that she was holding it together, until she went out to dinner and stared at the menu, unable to make a selection. Exactly.

I'm grateful for the connections I've made, the friends I have, at these two groups. I have a place to go to process my feelings and not be judged. Not that anyone anywhere is judging me, except myself.

(Name initials have been changed to maintain confidentiality.)

Michael John Hazen, 1959-2019

Tuesday night, January 22, I got a call from my brother, Carl: My younger brother, Mike had died. Jim and I had planned to spend the next day with Mike but stayed home instead and made plans to drive to New Jersey Thursday evening for a Friday wake and Saturday funeral and burial.

Carl had asked me, before Mike had died, if this was very hard for me. “It’s sad, but not devastating.”

Grief after Michael’s death isn’t like anything I’ve ever experienced. And, of course it isn’t. I’ve never been at this place before: my mother has been dead for 5 ½ years, my dad 4 years, and David 3 ½. And now my disabled brother has died at age 59.

I keep looking over my shoulder, wondering what this new grief looks like. I’m not having grief attacks; I don’t double over with pain. There are no tears; just brain fog. I manage my routine, but I can’t seem to focus, settle down, or concentrate. For a week I’ve wanted to write memories of Mike, but I can’t find many. They are buried deep underneath 40 years of living away from Michael. I hope if I keep listening, they’ll come to me.

For the funeral on Saturday, January 26, all of Michael’s five siblings, several nieces and nephews,, three grandnieces and two grandnephews were gathered. On a bright January day, his body was buried in my parents’ plot. In a few months his death date will be carved into the headstone at St. Mary's cemetery in Perth Amboy, New Jersey.

I’ve always known that our family was different, because of Mike. We each had to take our turn watching Mike, keeping him out of danger, but Mom and Dad made living with Michael perfectly natural for us. They loved Michael and fought hard to get the best for him. For them it was a strange and bewildering new world. For me it was the way life always had been.

I grew up more responsible and compassionate because of Mike. Carl said, at the wake, that Michael changed everyone who met him. He had a sweet innocence about him. If nothing else, Michael could help each person realize their blessings, the bounty in life that they had. The things he couldn't ever have.

My little brother, Mike

My younger brother, Mike, was a happy child He loved to run and play, sing the alphabet, and talk. He had a great sense of humor and could make us laugh.

When Mike was an infant, it became apparent to my parents that he was severely developmentally disabled. My mom would recount how the pediatrician reacted when Mom voiced her concerns that her baby, Mike, was not passing the normal milestones. She was told he was ‘within normal limits.’ That infuriated her. Even thirty years later, describing this would raise her hackles. As a skilled mother of four children, and a well-trained registered nurse, she was well qualified and competent to assess her baby’s lack of progress. Unfortunately, she was right. At his best, Mike gained the intellectual capability of an average three- or four-year-old.

His gait was uneven from cerebral palsy, but that didn’t slow him down: he was full of energy and vitality. He has epilepsy and when he was thirteen, he went into a state of constant, uncontrollable seizure. He survived but was never the same. He eventually had to be in a wheelchair all the time to prevent a fall during a seizure. Even now, with seizure medication, he often has a small seizure while I am visiting him. He hasn’t spoken for many years. Over the years since then his health has declined.

In the past year, he has lost a lot of weight and had several illnesses. He can no longer sit up and must either be in bed or in a reclining wheelchair. He needs to be spoon-fed. He lives in a nursing home, near one of my older brothers, Carl.

Mike has been especially lethargic for a few weeks. Today a palliative-care doctor confirmed what we all have known on some level: Mike is dying.

Mike has blessed many people over his 59 years. As I love him, he continues to give me the gift of a deeper ability to love and have compassion.

Being an older sibling can be a character-building experience, from the jolt of being displaced as the baby of the family to the  (hopefully) eventual overcoming of the attendant envy. Growing up with a little brother who never was older than three or four gave me many opportunities to give care and gain responsibility.

When Mike was about two years old, Mom and Dad decided to try a doctor in Boston who was specializing in developmental disabilities. I wasn’t part of that decision, but I do remember the result: Mike got to fly ON AN AIRPLANE to BOSTON with Mom. As a four-year-old, I had never been to Boston.

Now it makes me smile. Much like the older brother in the Prodigal Son, I envied my younger brother. As an adult, I understand that Mike has never had what I have: a healthy brain and body.

Mike is truly without guile. As a child, he could be naughty, never mean. He was childlike in all the best senses.

Of course, that meant he needed the tending of a three- or four-year-old. He could eventually dress and feed himself, and walk down the sidewalk, but he had to be watched to make sure he didn’t run out into the street.

I believe that we all lived as spirits before our birth. As newborns we are incapable of doing wrong. We develop a conscience and with it both the ability to do evil and the desire to do good. Gradually an average child is able to recognize right and wrong and act with some responsibility.

Mike has never attained that level. When I was a child, my mom taught me that Mike is assured of going to heaven, because he doesn’t have the capacity to do evil. The question of this mortal existence is whether I’ll make the choices necessary to live in heaven with him.

Mike has been my inspiration. I believe he will be whole, in body and mind, after his mortal life ends. I want very much to be with him in that glorious state.

Another talk about my manic depression

On Sunday, January 6, we had our first meeting of 2-hour church. (From 1980 to 2018, members of the Church of Jesus Christ of  Latter-day Saints met for 3 hours each Sunday. Before that, there were three separate church meetings on Sunday in addition to children's Primary and women's Relief Society during the week.)

I had forgotten it was fast Sunday until Sunday morning. Members who are physically able abstain from food and drink for 24 hours. I'm always happy not to have to fix breakfast. I don't mind fasting; I do it often. Though, as I age, going a whole 24 hours has become more difficult.

Sacrament meeting on Fast Sunday has no assigned speakers. Anyone in the congregation may speak and bear testimony. I decided to bear my testimony.

I spoke of my experience following the counsel of the president of the Church, Russell M. Nelson. He challenged the girls and women of the Church to read the Book of Mormon between October and December. I gave it a shot and succeeded. I listened to much of it on my monthly drives to New Jersey and New York City.

Our congregation has a lot of turnover. Young families move in for advanced schooling or jobs and then move on a few years later. So, there are always people I haven't met.

I said that I wanted them all to know is that I have manic depression, or bipolar disorder. A thing that has been a real struggle for me is that one of the classic symptoms of mania is that it feels like an intense spiritual experience. That has happened to me in each of my three psychotic manias.

Each time, when I awoke sane again, I was shattered. I immediately recognized that the experience was mental illness, not deep spiritual truth. My spiritual radio set was broken. That has been difficult for me. But I do believe that I can have true spiritual experiences. When I think about the restored gospel and my forty-four years in the Church, I know I'm a better person for it. I look back on my life and know this for certain.

Bearing my testimony two days ago was more like the experience this summer at Girls Camp, and in contrast to my experience at our Church mental health panel and my reaction to it. Afterwards, I felt a little apprehension: did I say too much? Would parents want me as their child’s teacher? Did I reveal things too personal? But, I’m glad I did it. It was easy to do in part because I have told my story many times, week after week, as a facilitator at DBSA-Boston Newcomers support groups. I work to give the story spirit each time. It’s like a memorized poem: I recite it with feeling. Unlike a poem, I can easily include or leave out details each time.

For over a dozen years, I have dreamed of writing a full-length memoir of my experience with manic depression. As the new year begins, I intend to focus on how I can be helpful and supportive here and now. The reason for a book would be to reach out to those confused and frightened young 'Mary Johnstons' trying to make sense of temporary but real insanity. That I can do that right now.

"A day late and a dollar short"

Happy New Year! I'm a day (or two) late and a dollar (or two weeks) short on blog posting, but here I am!

New Year’s Day, I awoke at 3:50 a.m. to drive Annie and Shawn to Logan Airport, then back to a quiet house, where I napped for a few hours. I spent the day quietly, doing laundry and cleaning up.

Everyone was at home for at least part of the holiday. A friend of mine recently remarked, "Grandchildren are such a delight!" Of course, our own little ones were a delight, but grandchildren come without the burdens of how to feed and cloth and educate them. I don’t fret when it’s past nap time or struggle through a transcontinental plane ride, trying desperately to entertain and quiet a rambunctious one year old.

Thoughts of David flitted through the holiday time, but no sudden spasms of grief, just bittersweet memory of Christmases past and an awareness that there will be no more memories to make with him.

We hosted about 34 people on each of the first three Sundays of Advent, sharing a meal, reading Christmas scriptures, and singing carols. On the last Advent Sunday, we were joined by several of our children and our grandchildren.

And now, the New Year. Jim has a colleague who stopped setting goals several years ago. He has ‘intentions’ now. I’m intrigued. In years past, I made a show of going to bed before midnight and ignoring the New Year's arrival. I pretended not to set goals, but really, I was always setting goals and feeling failure.

Yet, I feel a surge of excitement at the pure-as-the-driven-snow 2019. Can I move forward without saddling myself with unattainable goals?

I want to be realistic. Not commit to 'never again' and ‘from now on,' but be open to new habits and the possibility of being more consistent in the things that matter most to me.