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.

Winter sun

January 25, 2022 

All day I’ve experienced an overwhelmingly warm and powerful sense of wellbeing.

I love the Indo-European root kailo-. From that root we get so many nourishing words: wholeness, health, hale (as in hearty and...), wholesome, healing, hallowed, and holy. A depth of wisdom is expressed in a language where health comes from the same root as whole, and where healing and holiness are bound into that same family.

I’m a Self-help Junkie and am perennially dissatisfied with what I can accomplish in an hour, day, or year. This weekend, in yet one more attempt to harness my potential, and very aware, painfully aware, that I’m running out of time and personal resources (on turning 65), I devised a schedule for the week, mapping out what I would do each half hour of the day, from 8 a.m. to 11 p.m.

Jim looked at my list and asked if it were punishment. I can see where he’s coming from, but I really didn’t think it was.

And this first day of the experiment bears it out. I’ve somehow given myself permission to actually accomplish my aspirations, from mundane but satisfying housework: laundry and sweeping and meal preparation, through answering emails, writing up board meeting minutes, and on to my greatest aspiration: writing.

Last winter, with so many activities cancelled or relegated to Zoom, I wrote about Fierce February Light and sunlight Piercing the Windowpanes. Activities still aren't back to pre-pandemic 'normal.' I find myself home all day on many days. I follow the sun's progress, rising in my south window and then falling to the west. It feels like magic. Distinct from a month ago, the sunlight pours into the windows all day with a different substance to it. I can feel without measuring that the sun is reaching higher at its zenith. All day I can tell it will set later than a week ago.

It has now set, making the woods behind the apartment buildings look soft and furry. I’ve always had that false impression, that the winter hills of New England and Pennsylvania (place of my nativity) are covered in brown sable fur and not made of prickly twigs and branches and hard trunks. It's a beautiful illusion.

The sunshine instills me with a deep and peaceful hope. Something is coming unstuck inside me.

Baby boy

Living in Indiana and New Hampshire, back in the 80s, I watched with mild envy during Christmas programs while some other young mother held her newborn baby in the annual nativity tableau. Peter was born too late, in mid-January, Matt and Sam were springtime babies; David was nearly three months old by Christmas.

This month, while we tended two of our grandchildren: Eliza, age 4, and Link (Lincoln), age 1, for nine days, I started learning "Mary Did You Know". I was inspired by our friend, Marilyn Foley Jodoin, who died November 22nd. Many remembrances of her included how she sang that song each Christmas, accompanying herself on guitar, her long, red hair swaying to the music. Eliza sang it to us, impressing us with how much of it she knew by heart.

So, at four in the morning, I sang it, over and over, to soothe wakeful Link. I looked into his clear but troubled eyes and wondered at the miracle of this baby boy. I realized that I'd always focused on the story of one night, but that baby of Bethlehem grew up, day by day: one week, one month, one year. I'm sure his mother marveled each day, long after the shepherds and magi were gone home, just as I had for my own six children and as I do now for our dear grandchildren. I’ve never felt closer to the story of Bethlehem than while looking into the large blue eyes of our babe of Boston.

Ambition

My fairy-tale-princess origin story: the first daughter after three rambunctious boys, my dad rushed out and bought the frilliest dress he could find. A beginning that promised fabulous success and blessings.

I grew up with an ambition to exceed expectations. A burning desire to do the best, be the best, and a deep fear that I couldn’t keep up.

With three older and stronger brothers, I couldn’t keep up. Like Rudolph the red-nosed reindeer, the other reindeer wouldn’t let me join in any reindeer games. At most I could play nurse to their soldiers, sitting in the medic tent (beneath a large lilac bush) while they fought with guns and nerves of steel. I threw ‘like a girl’ and could never play in their baseball games.

At school I found something I was good at. More than academics, it was pleasing grownups. I wasn’t the strongest nor well-coordinated, but I was the most attuned to adult expectations in the classroom. I strove, incessantly, to live up to them.

But, I wasn't always the best. I remember boasting with bravado to my junior-high friends that if I couldn’t get an A, I wanted an F. I'd always gotten As, I declared.

But one day I found a cache of old report cards in my dad's desk. My fourth-grade report card had all Bs and Cs. I was horrified. My self-image tarnished, I strove ever harder to pile on the As and bury that shameful past.

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.