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Marya Hornbacher: Moving Beyond "Madness"

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My guest today is award-winning journalist and best-selling author, Marya Hornbacher. Your most recent book is Madness, A Bipolar Life . This can't have been an easy book to write. Why did you write it? What did you hope to accomplish with it?


[Note: Madness is not my most recent book-- Waiting is. Prior to Waiting, I also wrote a small book for Hazelden called Sane: Mental Illness, Addiction, and the Twelve Steps.]

Madness was, oddly, an easier book to write than my first two. It certainly wasn't comfortable to delve into all the issues or discuss some of the material, but I felt very certain that it was a book I wanted to write, and was clear on what I wanted to say, so there wasn't a lot of teeth-gnashing that went into it. I wrote it because there is so much misperception about mental illness, and so little understanding of what the actual experience of it is. My hope was to give the reader a sense of what it would be like to have a mental disorder, a sense of both the similarities between "madness" and "sanity" and the differences, and in doing so make "madness" a little less foreign and scary and unknown. I also wanted there to be a book out there for people going through struggles with their own mental health, as well as something that might be useful for their families and friends in understanding their experience.  Long story short, I wanted to open the door to a place that feels worlds away for many people, and show that it's not so far off at all--it's just another facet of human experience.

You had to do some preliminary research in order to write Madness . And I'm not just talking about the disturbing statistics at the end of the book.  You had to first reconstruct your own life which was full  of gaping holes. Can you talk about what that's been like - both living with the gaps and filling them in?  

Excellent question.  Filling in the gaps has been easier than living with them. As a journalist, you're practiced in pursuing the question, going deeper into those unknown places, using the tools of fact-finding and putting together what you discover as you go--it's like archaeology. So, as I went into the writing of Madness, I did what I always do when starting a nonfiction piece--research. I researched mental illness generally, bipolar specifically, brain chemistry and pharmacology, genetics and creativity, stigma and social beliefs about mental disorders, and then the material that you find in the back of the book about diagnosis, funding, treatment, and all the rest. 
But the material having to do with my own life required a similar approach--pretty much a journalistic line of questioning into areas I did not recall precisely. I interviewed members of my family extensively about themselves, their history, and to find out the exact historical details and sequence of events that I did not remember, and also to find out how they saw the mental illness and addiction described in the book developing over the years. I also did nearly 50 interviews with people who were present at critical points where my memory was lacking, so that again I could piece it together with accuracy. What I found was that as I did the interviews, went through medical records, photographs, thirty years' worth of my writing notebooks, two decades' worth of emails and letters, and put it all in place, was that my memory was triggered, and those gaps began to fill in. That's the nature of memory--it lies dormant until something, usually something small, trips it, and the details come back. There are certainly periods I remember elliptically or not at all, and those periods are identified as such in the book. Living with the gaps--like I said, is harder than filling them in. My short- and long-term memory these days is much better than it used to be, because of different treatment methods, and because I'm not abusing substances any longer. These days, I feel like my memory is failing at the same rate as everyone else's--getting old is getting old.

You were undiagnosed and misdiagnosed for many years, despite numerous hospitalizations. What was it like to finally find a doctor who correctly interpreted your constellation of symptoms? 

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cover art: Michaela Sullivan

There's a scene in Madness where I describe the conversation during which I was diagnosed. It was a very surprising conversation, for a number of reasons; first, he seemed totally unfazed by the symptoms and situations I was describing, which to me had always seemed simply "crazy," in sort of a general, foggy way, and a way that I understood to be entirely my fault. It had never occurred to me that I might have bipolar--which at that time was still usually called manic depression--because I knew nothing about it. Very few people did, other than clinicians and specialists in the field. 
That's primarily why it took so long for me to be diagnosed correctly, and the still-minimal level of knowledge about bipolar continues to account for the ongoing problem with diagnosing people accurately and in a reasonable amount of time. So when I heard "bipolar" applied to me, I had two almost simultaneous reactions: the first was a sudden flood of relief, that there was in fact something that made sense of the chaos of my moods and life, an illness, a specific reason. But the second reflected my total ignorance of mental illness in general--I really didn't know then that it was highly treatable, and could be very effectively managed. I thought it was essentially a death sentence--a diagnosis that meant I really was permanently and irrevocably "crazy." So, I had very mixed feelings about being diagnosed, and proceeded to behave in a very erratic fashion in terms of following the recommended treatment plan. Which means, of course, that my illness remained unmanaged.

Prior to that belated, spot on diagnosis, you had been treated with anti-depressants. That was not only not correct and unhelpful but dangerous. Why?

Like many people with eating disorders (even now), an assumption was made in my eating disorder treatment that I would have depression, and that Prozac would help. Prozac was new on the market, and is often the case with new meds, was not as targeted a med as it is now. It was being used too widely, and used almost across the board in the treatment of bulimia in particular. Nowadays, there is substantive research that eating disordered clients often have underlying depression--but virtually no research has been done about whether bipolar may be the correct diagnosis in some cases. I get letters all the time from people who were treated for eating disorders, diagnosed with depression, given antidepressants, and later correctly diagnosed with bipolar. People with bipolar respond differently to different antidepressants, but there is a high risk of triggering mania in bipolar clients if they are prescribed the wrong antidepressant. This risk is particularly high with the SSRI class of meds--and Prozac was the first of those on the market. So, it was indeed unhelpful to put me on an SSRI, and triggered serious manic episodes for all the years I took it.

Our readers may not be aware that you suffered from serious eating disorders starting in your early teens, resulting in multiple stints in the hospital.   Wasted: A Memoir of Anorexia and Bulimia talks about those years. In looking back, do you think there was a connection between your eating disorders and your bipolar? Do you ever wonder if you had been correctly diagnosed from the get go, that might that have lessened the severity or duration of the eating disorders?

[The eating disorder [ED] actually started in childhood, when I was about 9. I was not diagnosed until I was 16.]

I definitely think there was a connection between the bipolar and the eating disorder. The ED was the first method I could find that would in any way channel all the anxiety, mood swings, impulsivity, and a number of other characteristics of bipolar. Also, I do see eating disorders as an addiction, and heaven knows I was prone to those. Trouble is, as with substance abuse, EDs wreak havoc on your brain/body chemistry, and wind up having an inverse effect, worsening the anxiety and mood swings, and turning the initially impulsive ED behaviors into habitual and then compulsive actions. I'm not sure whether an earlier bipolar diagnosis would have lessened the severity or length of the eating disorder. I think it's likely, since research indicates that the treatment of anxiety and depression improves the outcome of eating disorder clients--again, no research on relationship between bipolar and eating disorders, but I do think the treatment of an underlying mental illness is in most cases beneficial. But I think a bipolar diagnosis for an adolescent in the 1980s would have been virtually impossible to come by.

You've taken your show on the road, so to speak. You lecture extensively about mental illness, eating disorders and recovery. With two memoirs, a novel and other non-fiction books under your belt,  what compels you to do this? Didn't you have enough to do already?

Indeed, I have lots to do. But there are really two reasons I do some public speaking on various subjects: 1. I love to teach, and see teaching mostly as a dialogue between myself and people who are kind enough to share their time with me, whether in a classroom or at a speaking engagement. Every time I do public speaking, I learn more, and hope I can take what I learn to the people I speak with next. 2. The speaking I do often focuses on subjects about which I am passionate--whether the subject happens to be mental wellness or writing--and it is an opportunity to share that passion, and hopefully bring something of use to the people I get to speak with, hopefully bring some measure of that passion for the subject--whether recovery, wellness, or writing--to them.

So, it could be said that you actually now have the best of both worlds. You get the satisfaction of doing good at the same time that you are writing and speaking on the things you're most passionate about. Did you ever imagine, when you were plagued by such a mess of aberrant behavior and hospitalizations that your life could look like this?

I would never have imagined my life would be a number of things it is now--simple, peaceful, filled with amazing people, and deeply satisfying--an absolute gift. I am also very grateful, as I think many people who love their work are, that I get the opportunity to do work that means something to me, and, I hope, to a reader here or there. During the years you speak of, when things in my life were so chaotic and challenging for both me and my loved ones, I didn't imagine I'd ever be able to do this work or give back in any way--I felt like an enormous burden, and couldn't fathom it ever being different. Not to be morbid, but I also doubted very much that I'd live to see 30. Now, as I'm pushing 40, I'm just profoundly grateful to be alive.

It is amazing, really. Crassly put,  it costs a lot to be bipolar. Would you mind giving our readers a sense of what your regular medical expenses are?

It's much less expensive now that I'm not in the hospital regularly, and haven't been hospitalized in many years. Back then, I was getting hospital bills in excess of $10K on a regular basis, after insurance payouts. These days, I have to pay for insurance--not horribly expensive, as I'm on Medicare, but still unaffordable to many, and a cost to the taxpayer, which (I should add) it would not be if insurance structures were different (I can't get regular insurance due to the "pre-existing condition" of the brain disorder, and the coverage under the new mental health parity laws is much more limited than most people are aware). Medicare covers a fairly small portion of the cost of my medications, so my annual outlay for medications is about $8,000. So now we're up to about $10,000/year for insurance and medication. Add the co-pays for my psychiatrist, and that adds a bit (about $500/year), and the full cost of therapy ($180/weekly session = $9,360/year). So, all told, we're looking at about $20,000 annually, with insurance. Without insurance, my medications alone would run me over $2000/month, and should I need hospitalization, I wouldn't be able to pay for it. So the more pressing question is not how much my medical bills are--I am lucky enough to have insurance--but how many people do not have insurance (millions), how many of them have mental illness, and how many of those people are dying for lack of basic medical care.


Good point, Marya. Which brings us back to the statistics about bipolar that you've included at the end of your book.  Tell us about what you discovered in your research.

The biggest concerns are under- and misdiagnosis, and insufficient or misguided treatment. On average, people go 10 years from the onset of symptoms to an accurate diagnosis of bipolar; obviously, a decade of untreated bipolar can create quite a lot of pain and suffering in the lives of those affected. And an enormous problem exists in that at any given time, only half of those with bipolar are being treated at all. The rest are often unable to get correct medication, psychiatric care, therapeutic care, hospitalization when it's necessary, etc., usually because of insufficient insurance coverage (or no coverage at all). Emergency room visits for psychiatric problems have skyrocketed since insurance restrictions on mental health care have gotten tighter and tighter. These stop-gap measures result in higher costs to the taxpayer--bipolar alone has an annual cost in the U.S. of about $40 billion (check--it may be slightly higher). That is a combination of direct costs (things like emergency room visits) and indirect costs (like lost work hours). In both cases--whether we're talking about direct or indirect costs--they can be radically lowered by making basic medical care for a physical brain disease (like bipolar) available to all.

Why did you decide to write the book the way you did?

There's an extent to which you don't decide to write a book a certain way, but rather it evolves and takes shape in its own way and on its own time. I didn't realize the book was going to be funny (at least some people think so) until I wrote that first scene that's incredibly dark and full of macabre humor; after that, the rest of the book followed suit, and kept that same madcap, roller-coaster-ride pace. There are passages obviously that aren't funny or rapid paced at all--but the book, like any other book, developed certain rhythms, certain recurring themes, threads that ran through it, tones of voice and shades of light that come and go and come again--books have a kind of language and music (one hopes, at least) that develops internally to the book, follows the book's own logic, and makes sense for the voice and message of that book. 
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If a book lacks those internally consistent things, it sort of collapses under its own weight and lack of cohesive structure. So--point being--I didn't decide to write it in a certain way, but I did follow pathways that opened up and looked promising. As is the bummer of all writing, some pathways look very promising and turn out to be a total nothing, while other pathways have to be pointed out by your editors, and then you can't believe you missed them. 
But a few things: I did keep the macabre humor that developed because it is reflective, I think, of the sense of absurdist humor that one keeps, or often needs to keep, when dealing with a life or mind gone off on its own.  I used the present tense a great deal to give the reader that sense of things happening right now, in this very moment, which is a device that can give momentum and speed to a passage that needs it. I made great overuse of the comma, and the run-on sentence, in passages where I needed to show the way the mind works in mania or similar states; likewise, I wrote in shorter, plainer structures in passages where I wanted to reflect the brevity and hollowness of thought that depression can occasion. The most carefully-constructed passages are those that describe almost entirely interior states of mind, and those were written carefully for two reasons: one is that in any memoir, you are doing your best to report accurately on things that you remember, and memory is always subjective; those passages where my own memory was compromised were prefaced with the caveat that I was remembering a mental state, not reporting a news event. 
The other reason is that in the entirety of the book, I was hoping to give readers a sense of what it is like to have a mental illness, rather than show what a mental illness might "look" like to them. It was a way of letting the reader into the mind of someone (for example, myself) who has a stigmatized and poorly-understood disorder of the brain, and allowing that reader a chance to identify with the person rather than observe, and judge, that person, those people, the condition we have.

Yes, stylistically, it was very effective. I felt like I was inside the experience rather than just an observer.  What are you up to now, Marya? What are you working on? Do you have another book up your sleeve?

I'm actually working on several books right now. I've got a new nonfiction book I can't talk about yet, unfortunately, but ask me soon. I'm completing a manuscript of poetry, and have two novels on deck. In the meantime, I write articles and such, and I teach in the graduate writing program at Northwestern University in Chicago, where my students continue to blow my socks off.

Well, I guess I shouldn't worry about any moss growing under your feet, Marya! What haven't we discussed yet?  

I think we've pretty much said it all--let's do an interview on my latest book sometime--it's a finalist for the Books for Better Life Award (tba March 12) and the Minnesota Book Award (tba April something).

It's a deal! Congratulations on the award nominations. Thanks so much for talking with me, Marya. It's been fun. Good luck with all your projects, including the top-secret one.

***
Marya's website: http://maryahornbacher.com/home.html

photo of Marya courtesy of Mark Trockman/ www.trockstock.com
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Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of (more...)
 

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