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.

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.

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.

Describing psychosis

Several months ago, a psychiatrist I know from DBSA-Boston contacted me, looking for people with schizophrenia or schizo-affective disorder. He is a psychiatric consultant for a pharmaceutical company and wanted to have a “Patient Day” where the researchers could meet people with mental illness.

A friend of mine, who has schizo-affective disorder, agreed to present and I asked if I could tag along as an observer.

That morning, it became apparent that they expected me to speak as well. I don’t have schizophrenia, but I have experienced three psychotic episodes, so I did have something worthwhile to share. We each had twenty minutes to talk, after which there would be a Q&A session. Nearly every week I tell a five-minute version of my experience with manic depression to a group of newcomers at DBSA-Boston. I immediately started to compose my thoughts for my presentation.

I expanded my standard five-minute introduction, describing in more depth what psychosis feels like, and expressing my frustration with the side effects of olanzapine (Zyprexa), which probably causes hand tremors that make it impossible for me to handle a sewing needle or a soup spoon. (In my former life I made wedding dresses for my sister and my daughter.) Among side effects, it’s mild, but it does impact my life. My memory problems are probably a mix of meds, the manic depression illness itself, and normal aging. My memory is definitely poorer than most friends my age.

The presentation was exhilarating. I had none of the negative reaction I unexpectedly experienced with the church mental health panel. It felt more akin to my experience at Girls' Camp 2018. I felt a connection to the researchers. Not insignificant is the fact that my dad was a research chemist for Merck, a pharmaceutical company. Besides his work with steroids, I’m very proud of the fact that I inspired his work to find an antibiotic to kill pseudomonas bacteria, after I nearly lost my leg to a pseudomonas infection when I was 18.

Talking to these research scientists about my experience with mental illness gave them insight and inspiration. And the office was just down the street from Joanne Chang's Flour Bakery. I brought home sticky buns, triple chocolate mousse cake, and pecan pie to share with Jim and our niece, Carla.

EIght days on

Eight days after our mental health panel, I’m still recovering. I’m not overwhelmed by the reaction, but there definitely is a reaction.

The impact on me of telling my story to a room full of people surprised me. More powerfully than ever before, I was confronted with my madness. For the first time I was speaking it aloud, not to a group of sympathetic fellow sufferers or newcomers at my support group, most of whom are reeling from their first disturbing, excruciating experience of mental illness, either of their own or of their son or daughter or husband or wife. This time I was speaking to a room full of 'normal' people, who had never dealt with psychosis. The fact of my insanity hit me square in the face. Three times in my otherwise very responsible adult life I had been completely out of control.

It didn’t help that I couldn’t see many familiar faces. Every Sunday, I teach nine and ten year olds while the other adults meet together for classes. New graduate students and professionals routinely move into our congregation while others move away. There were many unfamiliar faces.

And it wasn’t just the madness. It was my description of my physical and mental limitations, the result of psych meds. To demonstrate the tremor, I tried to spoon water into my mouth. I tossed the empty spoon away halfway to my mouth. (Jim said later that it was hard to believe I wasn’t doing it on purpose, though he did believe me; it made an effective demonstration.) I expend a good deal of effort on masking my tremor. I don't drink soup in public and I’ve become expert in controlling the tremor when eating anything else. I eat only crisp and crunchy iceberg or Romaine lettuce salads: I can’t spear baby spinach or leaf lettuce.

Speaking my experience aloud, removed me far enough to see my behavior the way ‘normal’ people would, people with no history of losing their minds and sanity. It was sobering and disturbing.

I’ve written about two of my psychotic episodes in memoir-writing classes I’ve taken online with Gotham Writers Workshop. (I love GWW! Their online classroom structure is brilliant.) The student comments have been positive, and not just because that’s part of the ground rules, to be kind and empathetic, to find the good in every piece. I believe I have the skill to convey the madness and involve people emotionally. Many readers comment that mine is an important story to tell. It's exhilarating to write about the episodes.

But the panel was emotionally exhausting. A week later, as I spoke with a good friend who attended, I was still processing the experience. At first I had thought it was because I didn’t recognize many faces in the audience, that I was afraid of being dismissed as a human being by so many strangers. But, I soon realized that I’m afraid of being dismissed by myself. Can I trust myself to know the difference between mental health and mental illness? A therapist, back in 1996, when the ‘diagnosis’ was still a fresh, raw wound to my psyche, said there was a fine but  definite line between sanity and mania. He was trying to calm me, to assure me that I could trust myself and that I could function in the real world. And in most ways, I can. I don’t second-guess myself about everything; I just live life. But how do I balance the desire for creativity with the need for sanity?