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.

IS it me or my meds?

 I’m studying a book by David Karp: is it me or my meds? (Harvard University Press, 2006) I’ve been aware of this book for several years, and finally started reading it a few weeks ago. David Karp is a sociologist who taught at the prestigious Boston College for many years. He’s written or co-authored nine books. I met him years ago at DBSA Boston (Depression Bipolar Support Alliance). He graciously accepted my request to read my memoir draft. His comments were insightful and immensely helpful.

 

I had avoided his book because I had the impression that it was exclusively about major depressive disorder: unipolar depression. To me, there is a great divide between unipolar depression and bipolar disorder. In my humble opinion, the two are very separate afflictions.

 

(I’m losing the culture wars: as you know, I object strenuously to the term ‘bipolar,’ but the American language has moved on and ‘manic depression’ seems to be headed for the same dustbin as ‘hysteria’ and ‘childbed fever.’ But manic depression is actually much more specific and effectively descriptive than those other abandoned medical terms.)

 

Although David Karp’s book is largely about depression, he has plenty to say about psychiatric medication more generally. He interviews fifty people who have taken psychiatric medication and explores the interplay between medication and issues of self, authenticity, and relationships, including the relationship formed with the medication itself. He acknowledges the great positive impact many medications have had on alleviating human suffering while exploring the double-edged-choice I make each day as I ingest psychotropic drugs.

 

And it is indeed double-edged. Medication has allowed me to live outside a locked psychiatric unit continually for 19 years. Most probably it has also diminished my mental powers. It may be affecting my metabolism (higher risk of diabetes) and vital organs (lithium is hard on the kidneys and thyroid.). Over time I’ve learned to live within its restraints. Both diminishment and adaptation have existed side by side for the 26 years since I was first prescribed lithium. Am I married to the medications, as David Karp suggests? I’d never thought of it that way, but yes. In what other sort of relationship entered into as an adult is there intimate contact for 26 years, with the expectation of a lifelong commitment?

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.

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. 

Early Rising

I’m a columnist for the Cannon Chronicle, a semi-annual newsletter of the descendants of Alan Munn and Mary Parkinson Cannon. I’m married to the editor of eight years, so I’ve got this plum job.

My recent column focused on meditation. Since the pandemic began I have attended a weekday meditation circle on Zoom, led by Khare, a dedicated DBSA Boston (Depression Bipolar Suport Alliance) facilitator and student of meditation. With few exceptions, I’ve been at my computer at 8:30 a.m. every weekday since April. I’ve seen great strides in my ability to sit still and be present.

In my column, I sheepishly admit that 8:15 a.m. is early to me these days. Then I defend myself: I’m retirement age, why not sleep in?

Early rising is a complicated issue for me. Much like my desire to take as few medications as possible, I’ve always seen it as a moral issue. “Early to bed and early to rise,” Benjamin Franklin wrote, extolling the virtues of early rising.

As a child, I loved to get up early. I remember in second grade getting up at 5:30 a.m. to go to morning Mass with my dad. Then I’d sit on a bench at the bottom of the stairs, navy-blue beret jammed on my white-blond head, and ferociously read Robinson Crusoe. (I was an aggressively good reader from a young age.)

When I was around 14, I would get up early on summer mornings and ride my bike all over the south side of Westfield, NJ. The smell of the fresh new day thrilled my heart and I reveled in enjoying a morning that everyone else was sleeping through.

Having manic depression (bipolar 1), I find myself always second guessing myself. Is my early rising virtuous or is it a harbinger of mania? Certainly a symptom of hypomania, that delicious state ‘below’ mania, is a lessened need for sleep. How does that work? Days and weeks of 6, 5, 4 hours of sleep with ever-increasing energy. A pretty stupendous crash at the end, but a crash of the mind, not the muscles and organs (aside from the brain).

So, there ‘tis, to quote the emperor in Amadeus. The virtue of my youth slams up against current medical advice. When I wake spontaneously at 5 a.m. these days, within seconds I have three thoughts: Did I take my meds? Do I need more? Can I handle this myself without meds?)

 

Cocktails

 I just discovered something about my psychiatric medication regime. I take a cocktail.

Years ago, when I began attending DBSA Boston (Depression Bipolar Support Alliance) during the day, I heard about cocktails. “I take six different medications, a cocktail” someone would say. I would be grateful I wasn’t doing that.

Why was I against taking a cocktail of medication? For one thing, I’ve never really adjusted to the fact that I take any medication every day. “Better living through modern chemistry” has never been a motto of mine.

I’ve always assumed that it was somehow virtuous to take the fewest medications possible. I often wonder if I really need to take exactly what I do. The cocktail treatment is experimental, as far as I can see. I’m not aware of double-blind studies of the efficacy of any of the myriad combinations of psychotropic drugs. How could there be; there are so many possibilities.

Recently, at DBSA, I asked, “What exactly is a medication cocktail?” Several people assured me that two drugs taken together constitute a cocktail. In that case, I first took a cocktail back in 1996, when my psychiatrist added an anti-depressant to my lithium. And since 2003, I’ve been having cocktails every day: three drugs. Who knew?

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.

Childhood revisited

 I continue to work on my memoir. On November 9th I sent it to my sister Maggie to read. (Thank you, Maggie!) She planned to return it before their Thanksgiving trip to North Carolina.

But they cancelled their trip, Thanksgiving came and went, and she didn’t send it back. Then Lincoln was born and Jim and I drove to D.C., stayed ten days, then drove to Chicago and spent a week with his mom.

Without planning it, Maggie gave me an incomparable gift. From November 9th to January 8th, I entered a magical state of childhood. Each break during college: Thanksgiving, Christmas, even summer, I would cart a heavy suitcase of books home to study. I rarely opened any of them, but the psychic weight was heavier than the suitcase. By the time I graduated from college, the mental habit of always feeling underprepared and inadequate was firmly entrenched.

My third psychotic episode was in 2003. Shortly after I returned home from the hospital, I enrolled in a creative writing class. I dreamed of writing a memoir of our 1995 cross-country trip. Some years later, my focus turned to my manic depression (bipolar). My inaction fed a constant undercurrent of anxiety.

But when I clicked send on November 9th, I was suddenly on vacation. A true six-years-old-and-nothing-to-do-but-ride-my-trike freedom. I couldn’t work on it: it was in Maggie's hands. The weeks stretched on, and I basked in the tranquility.

Is this an indication that I really don’t want to do the project? I don’t think so. I needed the breathing space, the luxury of having nothing to do. The ability to pick it back up on my own terms.

Slowing time down

 I’ve been studying out in my mind the concept of hypomania. That’s the delicious, intoxicating state below (hypo) mania. In my experience, psychosis is terrifying and not in a good way. Horror stories are fun (for some people, not for me) because they are safe. Whatever horrible thing is happening to the characters, we are safe in our living room or movie theater.

But hypomania isn’t terrifying. Food tastes exquisite; thoughts and ideas flow effortlessly; colors are more vibrant. Everything is breathtaking.

I experienced hypomania this past spring. It never got dangerous. It was seductive.

One of the brilliant ideas I had was that I could slow down time. I found the name of the year, twenty-twenty, enchanting. Until age forty, I had better than twenty-twenty vision: I was far-sighted. (I now have to wear trifocals to see my world sharply.) The possibilities in that name (before the virus) seemed endless and exciting. And suddenly I knew, with certainty, that I could slow down time. Not stop time, but take it very slowly, so that I could enjoy and savor the year and accomplish amazing things.

Describing it now, it reminds me of an experience I had one night in high school. I was at a party my parents didn’t know about, smoking something. As I sat in an unfamiliar kitchen, I looked at the white wall clock with black hands. I looked away and about an hour later glanced back at it. To my amazement, only a minute had passed on the clock face. I did it again and again. Time had slowed for me, how cool was that?

Several years later I realized the truth: whatever the speed of time, I had done nothing but sit. What did it matter if time slowed?

March and April were similar. I thought I had learned the secret to lengthening time, but I had nothing to show for it.

Sadly, November rushes by; time has not slowed. I experience what older people used to tell me: the years are flying faster and faster. The illusion of holding time was just that, an illusion. But it was a pretty thought while it lasted.

Clarity?

For my monthly therapy session on July 10^th, I planned to talk about my relationship to my meds.

Working on my memoir, I had remembered an insightful question Thomas, my therapist since 2003, had asked eight years ago. At the time, I was overwrought when a neurologist had suggested my long-term hand tremor might be Parkinson’s Disease.

“What does that mean for you?” Thomas had asked.

I immediately saw the two interpretations the question invited: what would having Parkinson’s mean to my daily life and what did the diagnosis symbolize for me.

I have been terrified of Parkinson’s for fifty years, and his question helped me to see that my mind was spinning uncontrollably towards an imaginary future instead of sitting in the present moment, where the possible diagnosis impacted nothing tangible. I was living in the terror of a constructed, dismal future.

Arriving at the neurologist's office, I  had believed the tremor was medication-induced and expected it to continue, stable and unchanging. I hoped for a cure, but I had made an uncomfortable peace with it. Suddenly an awful future loomed before me. Can we just go back an hour, my mind pleaded, to when I thought I had a medication-induced hand tremor, not a life-altering, lethal disease?

I’ve struggled with this medication for over a decade, trying multiple times to get completely off , mostly without medical supervision. I’d been trying again (under the supervision of my current psychiatric nurse practitioner (NP) this time) and it hadn’t gone well. No catastrophe, but symptoms that worried me, Jim, and my therapist.

As I talked to Thomas two weeks ago, my question mirrored his earlier one: what meaning does this drug have to me? Why have I struggled so long to remove it from my life? I had promised my NP not to do anything until our next appointment in August and I assured my therapist I wouldn't. But after that, I really wanted to try, again, to taper off it.

Thomas looked thoughtful and said, “I’ve heard from my friends in recovery (a.k.a. Alcoholics Anonymous) that doing the same thing and expecting different results is…”

“Yeah, I know: the definition of insanity.”

That shook me: is my quest insanity? Could it literally lead to that state I've experienced three times in my adult life?  I brought the conversation up in a DBSA-Boston support meeting. I rarely say anything so revealing. Why do I chafe against it, I wondered aloud? Couldn't I just try again, tweak the experiment, get a different answer?

Lucy, a longtime friend, talked about the challenge of getting clarity. After the conversation had moved on to other topics, she circled back to say, with urgency in her voice, that a phrase kept coming into her mind: black-and-white thinking. That’s a cognitive distortion, a warped thinking pattern where one can’t see nuance, options, and different viewpoints and interpretations. Everything in life is simply black or white, on or off, virtuous or evil, Nothing in moderation.

This took me aback: was my thinking irrational? I respect her clarity and added her words to Thomas'. Was my quest to get off the drug dangerous? Couldn’t I just try it one more time? Tweak my procedure a bit and get a different result? Or had I made the definitive trial and found an undeniable need for the drug?

Do I need to SWIM!  (Stop Whining Instantly, Mary!)? I’ve been relatively stable for over ten years. The meds and therapy have kept me out of the hospital. I’ve been able to function, live a full life, even find joy and happiness. What is this impulse to cut back, to take none of this particular medication?

Is it insanity to try to taper down again? Can I find peace and clarity after 25 years of struggle against any and all psych meds?

I haven’t admitted this specific struggle to many. I wouldn’t have brought it up in the group except that I was confident that no one in the group would look to my example and stop taking their meds. I’m 63 years old. I present as a mature adult who has made peace with her circumstances. I’m not a reckless teenager, or am I?

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.

Dry Mouth

At 9 p.m. on October 17, 2020, I developed a side effect.  I can pinpoint the time because I was driving home from what used to be my monthly visit to NYC to see R’el and Peter & family.

I noticed a cut at the tip of my tongue and abrasions on the sides of my tongue. I compulsively rubbed my tongue across my teeth. For the next two and a half months it bothered me. At my regular appointment in January, the dentist assured me it was nothing serious. There were no visible cuts or abrasions. The tongue was ‘shiny,’ which indicates irritation. It was dry mouth. He recommended a mouth rinse and a gel. I left the office swimming in placebo effect. Hearing that it wasn’t fatal and was treatable eased my mind. I’d never had a sore for over two months.

I bought a few products and experimented with them. The symptoms waxed and waned. Back in the Bronx, with Jim, for Presidents’ Day, I woke up at 5:28 a.m. Unable to go back to sleep, I googled dry mouth. It’s a usually a defect of the salivary glands. Neck radiation can cause it. Most often, it is medication-induced. Lithium blocks a neurotransmitter that controls the salivary glands, and thus can cause dry mouth.

Although I was on lithium for seven years after I was first diagnosed, and had been back on it for over eight months without a problem, it seems it must be a drug side effect.

Being able to visualize the problem helped deal with it.

I always thought dry mouth was a wimpy complaint. Just drink more water. I mentioned it in my support group and discover another member had dry mouth. Because of her career choice, which involves a lot of public speaking, she had changed medications. I decided to work harder at overcoming it.

It’s not thirst. Drinking water moisturizes my mouth, but as soon as I swallow I'm dry again, even drinking two quarts of water a day. I noticed that my mouth feels good when I first wake up. My saliva is slightly thicker then and it coats my tongue and mouth. The mouth rinse is viscous as well, the gel even more so.

After a Zoom meeting Jim pointed out that I make funny noises and move my mouth in an unbecoming way. It seemed impossible to stop: my mouth is constantly irritated. But, I don’t want to be the weird woman who is always sucking her teeth and pursing her lips. So I went on a campaign. I sipped water constantly. I found a mouth care kit: a mouth rinse, gel, and a small spray bottle. I stopped swiping my tongue against my teeth. After about a week, the cut on my tongue disappeared. There is still one tender spot, on the gum inside my front teeth. I’ve burned it countless times since childhood, usually while biting into a hot, cheesy pizza. I’m sure the tissue is permanently damaged and more susceptible to injury. I compulsively suck it.

I'm using the spray bottle often. Sugarless cough drops occupy my tongue, so I laid in a supply of sugarless cough drops and candies.

It’s a small problem. But it feels good to have some control and fight it.

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

A Diagon Alley, of sorts

I just spent 198 minutes (I’m tracking my time, have been for 4 years) ‘moving’ my desk.

It started with a Zoom problem. I’ve been spending a lot of time on Zoom: two weeks ago I realized I’d been on five Zoom calls that day. The last, a 2-hour DBSA-Boston support group for people with manic depression (bipolar), was too much. Thankfully, I wasn’t facilitating, so I gave my apologies and signed off for the night.

I usually join the Zoom meeting in my office, which is in the southwest corner of the second floor of our Queen Anne house. My desk had been sensibly placed facing the southern window, looking out towards a huge maple tree. To my right was the western window, looking out beyond the driveway to our ‘soccer field,’ the back part of the yard where we play soccer, frisbee, croquet, and badminton.

The problem is that the morning light from the southern window washes out my face during my weekday meditation session. The afternoon light from the western window does the same to the side of my face. I love the view of the outside, so I didn’t want to draw the blinds.

So, I moved the desk to be diagonally between the two windows. Yup, it took over three hours. The actual desk moving didn’t take that long. Moving all the stuff surrounding the desk, and ‘rewiring’ the phone, internet router, lamps, computer power supply, etc. did. And the sweeping and dusting and mopping that I can’t help but do when a heavy piece of furniture is dislodged after years of dust settling.

After I finished, and logged my time, I felt elated. (But not TOO elated. That’s a calculus I constantly have to make: am I feeling good (like a neuro-typical woman) or TOO good (like a woman in hypomania)).

And then the questions began: Did I spend too much time doing an optional activity? Will I finish the job and organize all the displaced stuff (which is currently on top of the regular clutter that has been accumulating on the guest bed in my office)? Will I follow FlyLady’s counsel and attack the clutter in 15-minute segments or will I try to clean it up all at once? Will I crash and burn then?

Those questions can wait till tomorrow. For today, I feel light and airy. I love the new view: I can see out both window better than before, with the laptop screen now covering the bare wall in front of me. I can look straight up and see David’s portrait. Maybe I’ll add a few more pictures, now that I’m facing that corner.

Jim once advised a business client to paint his office. The man was stressed with running a start-up company and stuck. By painting his office he could choose to do something within his control. He was being master of his fate.

That’s exactly how I feel.

Purple Passion Plant

A few months ago, I moved my purple passion plants to the sunniest window in our house. Peeking over my laptop screen, they make me happy.

Purple has always been my favorite color (In grade school I was known as the Purple Phantom.). I kept a purple passion plant in my dorm room in college. I love the deep purple fur on the dark green leaves. The deep purple intensifies in strong sunlight.

In 2003, I ended up in a locked psychiatric unit. When I returned to sanity, I attended group therapy sessions in a dayroom with a small greenhouse. I came home with cuttings from a purple passion plant and a saintpaulia, a type of African violet, with small downy leaves and lavender flowers.

As I put these little purple houseplants in a sunny window, and watered and pruned them, they reminded me to nurture myself. Keeping them alive symbolized my pledge to do the hard work of healing my mind.

Somewhere along the way, the saintpaulia died. I neglected it a little too long one too many times. The purple passion plant is hardier. Even when the main plant is neglected, I’ve been able to preserve a few tender tips and grow a new plant. Some mistakes in life come with a second chance.

A few months ago, Jim received a bonsai tree. We kept it near a window in our kitchen, but the new leaves came in progressively bigger and paler. I learned that large leaves are a symptom of light starvation. I moved the tiny tree to a sunny window. As it recovered, I gradually trimmed off the larger leaves. New leaves came in, tiny, shiny, and dark green.

My plants and I can survive neglect, but to be vibrant, intense, and truly alive takes care.

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.

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!

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.)

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.