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. 

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?

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.