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.