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.

Who I am

 I’m going to be controversial here. I don’t mean to speak for anyone else, but I will speak my mind.

A common discussion at my support group, DBSA Boston, over the years is the difference between being bipolar and having bipolar. In introducing myself as a facilitator at the newcomers’ meeting, I soften it even further, saying, I have bipolar disorder.

Most people reject the idea that they 'are' bipolar and opt for 'having' bipolar. But about eight years ago a young woman I know declared, "No, I am bipolar." I puzzled over it, wondering which felt truer to me. At the time I wasn't prepared to embrace her statement. I felt it was limiting.

As research for my memoir,, I just finished is it me or my meds? The author David Karp (whom I know through DBSA Boston) describes a support group meeting:

The meeting began with brief introductions during which nearly everyone said something like, “My name is Joe and I’m a depressive." After all the introductions, a young woman suggested that it would be far better if people said, “Hello, my name is so and so and I suffer from depression.”

A woman David Karp interviewed said:

Every time we take the medication it keeps constructing your identity as bipolar, or as whatever diagnosis, but you know, that is not who I am….It’s not, in any way, the whole of me. It’s a part of me. I am a teacher. I am a writer. I am a lover. I am a woman. [Mental illness] is just [something that] gets in the way a lot.

I have no intention of constructing anyone else’s identity, but lately I’ve been thinking that I am bipolar. (I actually hate that term, but for different reasons than the usual. Manic depression is so descriptive in a way that bipolar is not. I’m not a toy magnet, I don’t consist of two poles. I experience mania and I experience depression. However, I don’t particularly like the term ‘manic depressive.’ That does seem reductionist, as if I am totally in the thrall of those two states. I haven’t come up with a better noun (please suggest some), so for now I’ll use bipolar.

I checked out Word Hippo and found 273 (yes, I counted them: slow-news day here) adjectives for "vacillating between two extremes" and 49 "involving or having two extremes." Nouns are bipolarism, bipolarization, and bipolarity. I suppose it was too much to ask to web-search to satisfy me. (Give it a try, Matt. I so loved wrenmimic!)

Certainly when I’m psychotic or in a debilitating depression, there is something wrong. My life would be better, I could be more productive, better at relationships, if that didn’t happen. But the tendency to mood swings, the highs and lows (the 7-out of-10s and the 3-out-of-10s) seem to be ingrained deeply into the fiber of my being. The woman David Karp interviewed identifies herself as a teacher, writer, lover, woman. None of those identities is the whole of her but they are deep parts of her. They are parts of her identity. My manic depression isn’t the whole me, but it goes deep, very deep.

For the curious, Word Hippo suggests:

volatile, mercurial, oscillating, vacillating, capricious, spasmodic, undulating, two-faced, variable, unpredictable, changeable, unstable, erratic, inconstant, fickle, impulsive, tempermental, flighty, fluctuating, inconsistent, whimsical, mutable, fluid, unsteady, irregular, changeful, uncertain, unsettled, skittish, wayward, flickery, flakey, quicksilver, flaky, blowing hot and cold, irrepressible, wavering, excitable, protean, kaleidoscopic, moody, giddy, labile, active, movable, elastic, up in the air, unreliable, up and down, ever-changing, mobile, yo-yo, up-and-down, undependable, fitful, arbitrary, changing, random, varying, jerky, desultory, quirky, freakish, faddish, ungovernable, wild, haphazard, chance, vagarious, crotchety, constantly changing, ephemeral, shifting, transitory, frivolous, momentary, fleeting, peaky, short-lived, transient, impermanent, full of ups and downs, uneven, fluctuant, aimless, hit-or-miss, indiscriminate, unmethodical, casual, intermittent, chameleonic, sporadic, turbulent, along with waffling, fluky, directionless, orderless, blind, lost, reckless, offhand, iffy, sketchy, unsupported, off-and-on, objectless, quick-tempered, unreasoned, pointless, and more.

Not quite on the mark.

Moodswings

Last week I wrote a high-flying post, full of optimism and confidence. Since then I’ve spent some hours slogging through life. It's not really depression: it’s not the deep dark hole many describe. The self-loathing is absent: I feel a disappointment in my inability to accomplish what seems like reasonable goals on a reasonable timetable, but no self-hate.

 

This week, as my attitude towards my life has swung from optimism to, not pessimism exactly, but disappointment, I’m left wondering: is manic depression deep in my nature? Is it an essential part of my personality? Is it as immutable as my eye color and height?

 

I think it likely all of the above.

Yesterday morning I woke feeling discouraged. Monday is the day I have few outside obligations. When David was sick and I drove him to the Cox Clinic twice a week for leukemia treatments, I made no other commitments on Mondays and Thursdays. After he died, I promised myself I'd continue that schedule. Gradually obligations, freely entered into, crept back into my Thursdays, but I’ve kept Monday free, a ‘stay-at-home’ day. Each week it spreads before me like a field of freshly-fallen snow waiting for my imprint. And many Monday evenings I feel keenly a lack of accomplishment.

 

What if I accepted the ebb and flow of my moods as a part of me, just as the tides are part of the ocean? When I visit the shore, I don’t resist the tide, I carefully survey the beach for signs of the high tide mark, where the sand is completely dry and never drenched in saltwater. That’s where I place my blanket. If I've arrived at high tide, the surf is near the blanket, if low, I must walk a bit to enjoy the waves.

Speed Scrabble

 I’ve always enjoyed the board game Scrabble, though sometimes I’ve become impatient at its slow pace and drawn-out finish. Nowadays, Jim and I (and some of our kids when they visit) play ‘Speed Scrabble.’ Like the board game, each player initially receives seven lettered tiles. Instead of creating one large crossword on a board, each player creates an individual crossword in front of them. Every time any player uses all their available tiles, everyone picks another tile until they are gone. Then the first person to complete their crossword using all their tiles wins.

The last few weeks of working on my memoir have been stressful. Initially, I was weaving a tapestry of my personal narrative. Then I read Bill Stride’s memoir of schizophrenia, Voices Inside Me and realized I needed the recollections of people around me to balance my own distorted perceptions. In my manic mind, everything I thought and did was completely rational, until I was injected with a powerful anti-psychotic, slept for a day and a half, and woke up in a sane mind and shattered heart.

I imagined weaving these recollections into my story, intermingled with my memories for a richer, fuller tapestry.

But the two interviews I’m processing this month point in totally new directions. It’s overwhelming. How can I pull apart this tapestry I’ve woven and start fresh?

Then this morning I thought of Speed Scrabble. In that game, it doesn’t matter at all whether you have ever created words with all your tiles in any of the turns. Only the last round matters, finishing a crossword using all of the tiles in front of you.

Sometimes when I play, I create a beautiful, elegant, long word (maybe even with an X, J, or even Q) and build my crossword around its perfection. Then comes a crisis point where I simply can’t fit more tiles onto the existing structure. With great reluctance, I dismantle my work and start fresh. But it’s not like ripping a tapestry apart or knocking a house down. It’s just playing around with the tiles, experimenting with new combination of letters to form a complete crossword structure.

Realizing that this morning helped me over the latest panic. I don’t have to destroy what I’ve made. I just need to play around with the pieces and discover new connections.

Self-care and smarts

 I’m working steadily on my memoir of my experiences with manic depression (bipolar to those of you under age 40. Have I told you how much I hate the term bipolar?)

Swimming in the memories, processing them in new ways, listening to interviews of Jim, my kids and siblings and in-laws, I’m struck with many things.

One is my ‘recovery’ after my third manic episode in 2003. After seven years of faithful, consistent lithium-taking, I stopped, without benefit of medical advice. No, that’s not accurate: after leaving a voice message at the clinic declaring my decision, I received a reply voicemail, telling me, begging me, to take the medication. I blew off the communication with predictable (though not to me) and disastrous results: a psychotic break and a slow and painful return to the land of the sane.

While in the hospital, I listened carefully in the group therapy sessions and took active part, motivated to glean any wisdom the psychiatric profession had to offer. The sunroom where we met had a miniature greenhouse. I asked permission to take cuttings and brought home three: a variety of Saintpauli (African violet) I’d never seen, with small pointed leaves and delicate lavender flowers, a tradescantia zebrina with dusky purple-and-silver striped leaves, and a purple passion plant. (Note the color theme.)

I brought the plants home as a reminder to take care of myself.

Over the years, as the plants got woody, overgrown, and unmanageable, I would pinch off ends with my fingers, place them in a glass of water on the windowsill, wait for roots, and plant the new slips.

Now, 19 years later (the psychotic break was in January 2003), one variety remains: I have three clay pots of purple passion plants.

But when did my striving for self-care supersede my ambition to remain mentally sharp and smart?

My four surviving siblings graciously agreed to be interviewed for my memoir. There were three things they all mentioned as notable: how big an influence for good our brother Michael was on our family culture and on each of us individually, what a big deal my epic cross-country trip was, and how smart I was as a kid.

I was driven to succeed in academics. I desperately wanted to please my research-chemist father. I took Advanced Placement classes in high school and earned a semester’s worth of college credits at Bryn Mawr College, one of the selective Seven Sisters.

But for years I have struggled to remember things I read when I have the bandwidth to read at all. I’ve taken to listening to audiobooks, which helps, but retention is poor. After a few months I don’t remember what I’ve heard.

No one would call me smart now, not at the level, the caliber, of my early, promising years.

I’m not whining (I hope), just trying to get the facts down. Fact: as attested to by each of my surviving siblings, I was the smart one in the family. Fact, I did very well at an academically competitive college. Fact, I’m nowhere near at that level now. When I started taking psychiatric medications, I noticed a dulling, a dimming of my intellect.

When did self-care overtake smart? When smart was no longer an option. I made no conscious decision to give up, but as the years have passed, so has my intellectual sharpness and edge. So it is. 

Reward and Loss

 

December 1^st I signed up for Nerd Fitness One-on-One Coaching. I had stagnated in my fitness goals and needed some outside help. Frankly, aging is encroaching on my resolves.

              This isn’t going to be a post bemoaning lack of fitness, but suffice it to say that over the last 18 months I’ve gained over 25 lbs. At that rate, I soon would be at risk for serious health consequences.

              My new Nerd coach, Heather, suggested I start by simply logging my food intake and giving her access to my data. She reviews it, without comment. I thought that would clinch it: the motivation of knowing someone, even a very sympathetic someone, was reading my log. But it didn’t.

              I asked her about motivation tips and she suggested a non-food reward system. As I considered it, I couldn’t think of anything I wanted (besides ice cream and skittles: I have very simple tastes). I enjoy wearing old clothes, have frugal habits, and these days, with college tuitions behind us, if I really want something, I buy it.

              I mentioned the problem to my psych. nurse practitioner. She suggested finding a therapist who could help me work through the issue. Duh! I’ve had a therapist since my last psychotic break in 2003. Oh, right, she said, of course you do.

              When I saw my therapist, David, two weeks later, I presented my dilemma. What he asked in response took me aback.

What losses have you experienced during the pandemic?

    My immediate reaction was: I haven’t had any significant losses. I haven’t lost any loved ones in the pandemic (my parents died six and seven years ago), I can freely take walks in our leafy ( currently snowy) suburb of Boston; my grandchildren (and children) have been able to visit and enjoy our ‘grandchild magnet.’ But David just sat patiently as I processed his question and I did finally offer that I’d lost the ability to travel freely, attend musical concerts, and meet with people.

              He asked what my church congregation was doing and I admitted that although the in-person meetings were better than nothing, they were highly unsatisfactory: the 30 or so participants sitting in every third pew, unable to congregate, chat, and catch up before and after sacrament meeting. Sunday School and Relief Society are exclusively on Zoom.

    We left it there: the hour was over, but I continued to ponder his question.

    A reward system, as I have always practiced it, is actually a punishment system. My focus has always been giving up something pleasurable unless I straighten up and meet a goal. Similar to lugging books home from college, in my reward system I'm always behind, always inadequate, always falling short.

    Do I really need to punish myself in this time of loss? No, I don't. I've always considered myself an introvert, but even this introvert misses the face-to-face contact, the ability to give and receive nonverbal messages, the immediate feedback which prevents the common talk-over of Zoom.

    Pondering David's inquiry hasn't solved my overeating, but it is giving me a window into my interior world. That's the first step.

A Young Mary Johnston

Last August, I hired my friend, Lori, as editor and cheerleader for my memoir.Then, early in the coronavirus lockdown, I experienced hypomania, that elevated state that can be the precursor of psychotic mania (hypo = below). I wasn't sleeping well and Jim and I were concerned.Perhaps writing about mania was triggering an episode, so I stopped writing it. After two months, I'm ready to restart.

In November of 1995, I woke up in a locked psychiatric hospital, shattered, crushed, devastated. I felt I'd returned from the awful decay and corruption of death. A few weeks later, I sat in a church meeting, convinced that I didn't belong, totally worthless and unworthy. I knew no one who had been psychotic, no one who had manic depression. No one.

I want to be the mentor that I didn’t have. The wiser woman who has been there, lived through it, who can assure the confused, frightened young woman that mental illness is just that: an illness. Unique in it’s effect on the mind and spirit, but manageable.

A few months ago, at Lori’s suggestion, I framed a snapshot that my dad’s cousin took in Washington State the summer before my psychotic break. The Mary in the picture grins, right hand on hip, leaning against the tan tent trailer. Annie leans against her with a five-year-old's grin. Skinny David folds his arms, his black wristwatch visible. Peter smiles from beneath a red baseball cap; R’el stands behind him. Matt’s hand rests on little Sam’s arm. Sam’s blue shorts barely peek below his large white T-shirt.

Mary’s smile is jubilant and confident. She’s in her element, fulfilling her dream of many years: driving to each of the 48 states, dipping into Mexico and Canada, and taking the whole summer vacation to do it. She has spent hundreds of hours pouring over a road atlas, counting the tiny mileage numbers to calculate reasonable day’s mileages, reading travel brochures, planning which National Parks to visit, consulting Woodall's to find campgrounds. Now she's doing it.

In three short months she’ll wake up in a hospital, wrenched back to sanity with an injection of a powerful anti-psychotic. She’ll be told she must take medication for the rest of her life. That she can't control her mind, can't be reliable without a daily dose of  pink pills. They will tamp down her enthusiasm, dull her intellect. But what's the alternative?

During those first dreadful days and weeks, she will feel alone and frightened. I want to be with her.

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.

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.