Anniversary: November 5, 1995

 On November 5th of 1995, I went crazy, bonkers, insane, out of my mind. Literally.

I once heard Kurt Vonnegut, author of Slaughterhouse Five and other sixties (and seventies) classics, talk about his family history of mental illness. “Bats in the belfry,” he said cheerfully. I loved his bluntness. I don’t judge anyone else’s sensibilities, but I personally don’t like euphemisms, if for no other reason than that they don’t have the intended effect. New terms for old conditions can’t keep up with popular culture turning them into insults.

So on that first Sunday in November (I’m on deadline here), I stood outside the kitchen in the warm autumn sunshine as a kind older mother combed out my long hair to remove head lice nits. I stayed home from church, a very rare occurence, because some of our family were infected with lice. Later that afternoon I started wandering around the house making no sense to anyone but myself. I was convinced evil men were trying to kidnap my daughter. I thought I could read Jim’s mind by studying his facial expressions (and did pretty well with that). When my bizarre behavior escalated a good friend took me to her house. Later a few friends drove me on Route 2, a four-lane highway, to Lahey Hospital. On the way I unbuckled my seatbelt and said I’d get out. Luckily I still could be persuaded by my friend as she said, “You don’t have to do this, Mary,” reaching across my body and calmly buckling me back in the minivan seat.

I spent several hours in the emergency room and then about four days in the psychiatric unit on the 5th floor of Waltham Hospital. I was so naïve that it took me a day to realize the doors were locked.

It was a memorable weekend. I review parts of it most weeks at the newcomers meeting of my support group: DBSA Boston: Depression Bipolar Support Alliance. Just this past Wednesday I told part of my story again. Later, as the other Zoom participants introduced themselves, a young woman thanked me for my story. It gave her hope to hear me share and see that I had survived and flourished despite my illness.

When I woke up from the anti-psychotic-drug-induced sleep twenty years ago, I was in my right mind and shattered. I knew no one, NO ONE, with mental illness. Intellectual disability, (we respectfully called it mental retardation in my childhood), I was intimately aware of. My little brother, Michael, was born severely disabled and I lived with him daily. I knew his classmates and later I trained as a special education teacher.

But I had no such history with mental illness. Soon after my first hospitalization, a woman we met at church generously shared her experiences with Jim and me. I vowed that I would be open about my illness. I wanted to be the person a 'young Mary Johnston’ could turn to. I often have that privilege at DBSA Boston.

I talked on the phone today with my brother, who has been sober for as long as I’ve been married. He started an NA (Narcotics Anonymous) meeting in Butler, PA, many years ago. He told me, with passion, about a man he knew whose life was changed by NA. It reminded me of something I sometimes forget in the administrative throes of being president of DBSA Boston. We do what we do because it changes lives. It makes a difference. That’s what we are here for.

Sadness at McLean

 I had a sobering experience. My DBSA (Depression Bipolar Support Alliance) office key has been dodgy for years. Last week it finally wouldn’t work at all. Our office is located in the cafeteria of McLean Hospital, a world-renown psychiatric hospital that was founded in 1811.

I decided to call my husband, Jim, to see if he had any suggestions. The reception in the cafeteria was poor, so I walked outside towards the parking lot to talk.

A woman came walking by with a companion who was obviously a McLean staff member. I recognized the woman: an acquaintance from long ago at DBSA. She always had a ready smile.

The change in her was striking. She walked very slowly. When I called out her name, she stopped and looked at me. I wasn’t sure she recognized me, so I reminded her of our connection. I rattled on about how DBSA has been on Zoom for three and a half years and how we missed being in person.

She looked at me intently but never said a word. Then I said I had to go (because I had run out of things to say) and she continued her slow walk.

It was tough. I know nothing of her history the past several years. I know nothing of what brought her to McLean this time. She acts so differently from the friendly person I knew way back when.

It made me realize anew what a serious condition mental illness is. I have been blessed: the medications, for all my love-hate relationship with them, have allowed me to have a full life. They are far from perfect. Sometimes I feel like we are in the era that general medicine was in before antibiotics and chemotherapy drugs. Like chemotherapy, psychiatric meds are a blunt instrument with serious side effects. Although researchers continue to learn more about mechanisms, many of the drugs are decades old. I think there are many kinds and causes of mental illness which makes it very difficult to find effective medications that target the specific cause.

Whatever the reason, psychiatric drugs are, in the words of David Anderson, TEDxCaltech presenter, Your Brain is More Than a Bag of Chemicals (January 2013), like trying to change your car’s oil by pouring oil all over the engine hoping some of it reaches the right place.

My encounter at McLean reminds me that mental illness is a terrible illness with huge costs to those who aren’t’ treated successfully. My heart goes out to all who still suffer.

My subconscious is my friend!

 I woke up Tuesday thinking, 'my subconscious is my friend.' Actually, I woke up remembering that I’d had a fitful night of sleep, waking several times during the night and realizing each time that I had been dreaming of editing DBSA Boston board meeting minutes. I didn’t remember details of the dreams, just the impression of spending all night puzzling out how to organize the minutes from the raw notes I had typed during the meeting as I struggled to keep up with the lively discussion.

But instead of adding the fact of my dreams to my stress level, I considered them in a different light. All night my subconscious was working on the minutes in many ways: multitasking in a way I could literally only dream of.

My minute-editing career had come to a crisis the week before. Through a series of events, 95% of which were of my own creating, I had to send a 4-month backlog of minutes to the board a few days prior to Monday’s monthly meeting.

Each month for several now I’ve promised myself to edit the minutes within two days of the meeting, while the discussions are fresh in my mind. With my current memory abilities, recall becomes much tougher as time passes.

And each month for several I’ve procrastinated and sent the minutes days before the next meeting rather than days after the previous.

Arising Tuesday morning with the new thought, that my subconscious is my friend, freed me to work on the edits of the Monday meeting with energy and confidence. My subconscious had attended that meeting and was hard at work processing it, not only the actual notes and memories but the emotional baggage and stress I've chosen to carry: all the resistances I have to sitting down and doing the task.

By Tuesday night I had emailed the draft of the minutes to my board members. And now I have 25 days to relax and enjoy and savor the experience of having a dreaded task completely, entirely, and utterly done. (And hope no one sends back any edits, I chuckle to myself.)

Another Day, Another Walk

In this morning’s meditation circle, I find myself distracted, focusing for only two or three minutes at a time. I then spend the rest of the morning ‘cleaning up’ my office. It looks better than it did an hour into the project, but it isn’t the fantasy office of last night. But I have made a dent in the disorder.

In the early afternoon I’m ‘tech buddy’ at DBSA-Boston (Depression Bipolar Support Alliance). The facilitator directs the conversation, while I admit people from the ‘waiting room,’ watch for electronic blue hands (and lower them after the member speaks), and hang out in case there are technical problems, which there aren’t. Chuck, our president, likes to say, “We’re building the plane as we fly it.” That made someone nervous: “How about we’re building the plane in the hangar?” Doesn’t quite do it for me. Then I hear, "We’re flying the plane in the hangar." That’s exciting.

When I’m done with the Zoom group, I step out of my office and the fragrance of baking bread wafts up the stairs. Jim comes over from the coach house and soon we’re buttering fresh slices.

In the early evening, two friends from church start a conference call with me as I walk. Then R’el calls. I planned to walk an hour, but I have no desire to turn around. I walk down the Battle Road, which has become my favorite route. After about 50 minutes, it seems I really should turn around and come home. Five and a half miles. It feels so good to be outdoors and on the move.

I’ve adjusted pretty well to being at home. Being a homemaker, I’ve spent a lot of time at home. But I still haven’t adjusted to the idea that most other people are home all day. When my friends called, I had to remind myself that they’d been home all day: I just picture them at their job sites. This evening our ‘ministering brothers’ from church scheduled a meeting for 8 p.m. I came home and was in my office when Jim called at about 8:05 p.m. They were all on the video call. I was waiting for a knock on the door

Flagpoles and Spines

I apologize for being AWOL (absent without leave) for four months.

Today I read a ‘morning musing’ email from  FlyLady Marla Cilley: "You Might Be a Perfectionist If..." I’ve been a perfectionist about my blog. If I can’t dedicate several hours to it, I don’t post. So, here’s an experiment: I pledge to post here daily, by 9 p.m. through April. I just changed my email signature:

Blog “updated DAILY in April”.

I am a proud member of DBSA-Boston (Depression Bipolar Support Alliance). When Jim and I started self-isolation on March 13, I felt secret relief that my volunteer commitments, including facilitating at DBSA once or twice a week, would halt and I could re-set. I felt overbooked but unwilling to give anything up. To my dismay, The DBSA Board swung into action. They met in video-conference each day for over two weeks and launched online support groups for people with mood disorders and their family and friends. It was an intense experience for me, in fact, I started going hypomanic for the first time in many years. Now that the online program is in place, the time commitment has lessened (and the hypomania has receded (dang!)).

I’ve discovered, in an unexpected and deep way, that I am part of a community of generous, caring people who understand mental illness because of ‘lived experience.’ Many people have stepped up and given time and effort to maintain our connections with each other during an uncertain time when many people are experiencing anxiety and isolation.

Khare, DBSA-Boston's technical guru, works every day to improve our online experience. For years he has been our meditation specialist, generously guiding a weekly Meditation Circle. Now he offers one every weekday.

How comforting it was to  see familiar friends this morning. Khare suggested an image I've been thinking about all day: a flagpole and flag. The flag is whipped by a strong wind, then ruffled gently, then hangs limp. The experience of life can be as disruptive as strong winds, but I can be the flagpole, not the flag.

I've never bonded with the standard meditation metaphor that my thoughts are clouds to be observed dispassionately, letting them drift by without trying to prevent them or hold them. But this has possibilities. My thoughts can be like wind: coming and going, unbidden and, unpredictable. They can be benign, helpful, practical, distracting, distorted, depressed, or hypomanic. My spine can be my flagpole. My backbone gives my body structure and strength. It supports me, whether I sit, or stand, or lie down. It isn't brittle and in danger of breaking, but strong and supple. With a healthy spine, I can be solidly grounded.

I’ve never stayed with meditation; I'd get restless and bored. But this practice is different. I awoke this morning feeling anxious, fully awake but unrested, and reluctant to get out of bed and face my life. After twenty minutes with my eyes closed, I was ready to start my day afresh. Not energized, exactly, but fortified.

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.