Monday, June 29, 2009

Madness: An Interview with Marya Hornbacher

While in college, I was diagnosed as bipolar II, also known as manic depression, where moods cycle between highs and lows over time. The "manic" episodes in bipolar II, however, are less intense than those with bipolar I. Being diagnosed as mentally ill with all the stigmas attached would have seemingly been a low point in my life but, instead, I was finally able to put a name to the "oddness" in my brain. It was very liberating to find that many others shared the same condition and some of them were even well-known: Kurt Cobain, Lord Byron, Charles Dickens, F. Scott Fitzgerald, Tim Burton, William Faulkner, Sylvia Plath, Charlie Pride, etc., etc. The list goes on and on.

But it wasn't enough for me to know that I had bipolar disorder and that others were in the same boat. I wanted to devour as many books as possible to better understand my condition and one of the best accounts that I've come across is Marya Hornbacher's Madness: A Bipolar Life. Impossible to put down, Madness is a hellacious roller coaster ride that documents Hornbacher's battle with bipolar I disorder in such a manner that it seems improbable that someone could survive such an ordeal for so many years and, yet, she is here to tell the tale. Thankfully. Still, the most haunting part of the book may just be the facts that she compiles at the end regarding bipolar disorder:

*Life expectancy of an adult with serious mental illness: 25 years shorter than that of a person without
*Bipolar patients who have attempted suicide: 25%
*Bipolar patients whose suicide attempts have been lethal: 15-20% (This is the highest suicide rate of any psychiatric disorder, and more than 20 times higher than the rate of suicide in the general population. About half of all suicides in the U.S. can be attributed to bipolar.)
*Odds that a person with bipolar I will also struggle with substance abuse: 60:40
*Odds that a person with bipolar II will: 50:50
*First-marriage divorce rates for people with bipolar disorder: three and a half times higher than the rate of divorce in the general population

To say that I was enormously impressed by her book is an understatement, and she was gracious enough to grant me an interview which I can't thank her enough for.

PopCultureJihad: To me, the moral of your story is one of acceptance. Accepting that you will never defeat this illness and that it will always place limits on your life, but there are so many people out there who refuse to accept the fact that they are mentally ill either because of the stigma surrounding mental illness and/or the pressure to "fit in." You've struggled with this yourself and it's not exactly an overnight transition. What could have possibly helped you to reach the point of "acceptance" at an earlier point in your life?

MARYA: I think if I'd known how much pain I would cause myself and others by refusing to accept the reality of my mental illness, I might have thought twice about resisting it so hard. The simple fact is that a failure to accept is a failure to live fully; in refusing to accept my situation, I made a de facto decision to live in fear, antipathy, and outright battle on a continuous basis. Those are states of mind and emotion that are incredibly corrosive and ultimately destructive of the human spirit. By the time I came to realize that acceptance was the only way I would ever learn to manage my mental illness, I was absolutely beaten down, and beaten down by my own choices. I think if there had been people in my life who also experienced mental illness, but chose to accept and manage it, I might have learned from their example that theirs was the way to a peaceful co-existence with the mind that I have. There's no question that the stigma surrounding mental illness makes it exceptionally difficult to accept, and I believe that continuing to work toward education and understanding about mental illness will lessen the stigma, and therefore lessen the stigma that we internalize ourselves. The less we fear the illness, the less we fight, and the better we manage.

PopCultureJihad: There's a recent article in Newsweek magazine entitled "Listening to Madness" - - that talks about the Icarus Project in Manhattan - a "mad pride" collective - in which its members are forgoing medication and "embracing mental illness as creative force." I count myself as part of the nonmedicated population, but for very different reasons. What are your thoughts on the "mad pride" movement and others who forgo their medication?

MARYA: While it's worth noting that the Icarus Project calls itself "pro-choice" about meds, and suggests that its members can take them or not, at their discretion, I think the general tenor of the movement is fairly firmly anti-med. This is not entirely unfounded, by any means; God knows I've been put on meds that have nearly killed me, that have indeed poisoned me, and that have caused intolerable side effects. But at the end of the day, I need meds, because without them, I'm simply not as highly functional as I want to be. Similarly, I share the Project's antipathy/skepticism toward/about psychiatric hospitalization, diagnoses, et al; but I've also had my ass and life saved time and again by exceptional doctors at hospitals who have had the insight to see what kind of treatment was going to pull me out of a severe episode. I, too, struggle with what Icarus calls forced treatment, and others call mandatory hospitalization; anyone who struggles with these disorders recognizes the deeply discomfiting notion that our minds may cause us to lose control of our choices. The trouble is, our minds occasionally make dangerous and problematic "choices" for us when we're sick, and some of us, some of the time, become a danger to ourselves or others; it's difficult not to see, then, the appeal of mandatory hospitalization on those occasions. I myself would very much like to know that I will be put in a safe place if I am not in my stable state of mind, and am therefore not making safe decisions. I think, in some ways, that the whole struggle with the psychiatric establishment and its treatment modalities comes less from a proactive place, and more from a reaction to the exceptionally, spectacularly bad treatment many of us have received over the years--misdiagnosis, dangerous and poorly chosen medications, disrespectful professionals, ignorant professionals, misguided treatment decisions that gave us little room to move as individuals, and a general sense that we are not actually seen as individuals but as "cases." The psychiatric industry is, forgive me, a total fucking disaster, and the casualties are the people who are treated so poorly. The excellent professionals are definitely out there, but they're hard to find. So, after a certain number of years of poor treatment, it makes sense that people would finally opt out of the entire business and make an attempt to deal with their illness on their own. That said, it's not how I do it, because I can't. I've tried doing this without medication, and it just doesn't work. That's not because I'm being spoon-fed a bunch of garbage about how I'm "sick" when really I'm a "genius"--it's because I have a disease that requires treatment, and medication is part of the treatment I need. I do see mental illness as an illness--it is, in fact, a brain disease, no matter how many "gifts" it may bring. Which leads me to the part of the Mad Pride movement I have the biggest problem with, viz. the idea that madness and giftedness are one in the same. They certainly tend to cluster, genetically, in the same people and the same families; there's no denying there's a connection between mental illness and creativity. But I get tired of the line that my madness is the source of my creative work. Frankly, my madness does nothing but interfere with my creative work, on a practical level. When I'm having an episode, I flat out can't work. I speak for a number of the artists with mental illness that I know when I say that sustained, quality creative work--a lifelong creative career--requires a level of mental clarity that my illness denies me when it's at its worst. People with bipolar often don't want to take their meds because they're afraid they'll lose their highs, and with them their manic artistic productivity. What I've found is that, with my highs gone, I no longer generate reams and reams of manic garbage. I produce more slowly, but I produce better work, and I produce consistently, and over time I build a body of work that is of a higher level of quality than the very mixed bag my manic/depressed work was. Also, simply put, a whole lot of artists with mental illness killed themselves. I'm not interested in doing the same. ALL THAT SAID: I agree with the man quoted in the Newsweek article who speaks to the point that the Icarus Project has created something badly needed within the mental health world: a community of people who connect with one another on more levels than simply "we're sick." The Mad Pride movement may be an important move toward lessening stigma, by virtue of the fact that it sees us as individuals who have a shared challenge, rather than as a massive, unknown, feared, teeming Illness.

PopCultureJihad: I have reservations regarding genetic engineering in which they may be able to someday tinker with the genes that cause mental illness and possibly eradicate it, creating what I've imagined to be a world of "robotic" humans who all think and act the same. A bipolar perspective is far different than someone who is not mentally ill. A person growing up poor is going to have a far different perspective than someone who grew up wealthy, etc., etc.
On the other hand, I personally do not want to bring a child into this world knowing that I may possibly pass this condition on to my offspring. I'm very conflicted on this issue. With all that you've been through with bipolar disorder, how would you personally feel about bringing children into this world if you could? And, If you knew the child was going to be bipolar and you could eliminate the bipolar gene, would you?

MARYA: In short, yes. If I was having a child, and had the opportunity to prevent that child from having bipolar, I would do it. I would think hard, but I would do it. It's a matter of wanting to prevent what is sometimes an excruciating amount of mental and emotional pain. I wouldn't wish bipolar on anyone. There are people who've asked me if I could go back and live my life over, would I want to NOT be bipolar? Indeed, I would want to not be bipolar. I appreciate some of the experiences I've had; I appreciate that my mind has the advantages it has; but I don't believe those advantages are the sole purview of someone with bipolar, and I'd love to be one of the people who has the advantages and not the bipolar (because I, like anyone else, want life to be easier). But, I'm with you in the uneasiness about the idea of genetic engineering. With our knowledge of genetics in its infant stage (and it is), we still don't know how the genes for mental illness relate to other genes, such as (most obviously) those that are related to creativity. The perception that they are the same genes (madness = genius) is inaccurate, but it is true that the genes are related in some way; until we know what way that is, we need to be careful before we go removing genes willy-nilly, or we're not going to like what we get.

PopCultureJihad: I personally think that any sort of mental health care program should incorporate a neurologist as well as a brain scan to provide a sort of physical landscape of the brain. Though it has come a long way, we are still somewhat in the dark ages of mental health care. If Marya Hornbacher was in charge of overhauling the mental health care system, what would it entail?

MARYA: Research. The amount of money devoted to researching the mental illnesses is positively pathetic. You're right, we're still in the dark ages. We still have the New York Times referring to "mental illnesses" as opposed to "physical illnesses," when for God's sake mental illnesses are physical illnesses. If the Times can't get it right, do we expect the average person to know that mental illnesses are physical diseases of the brain? And if people don't know that, how can they be asked to support research in to these diseases of the brain at the same rate as they're supporting research into other brain diseases, like Parkinson's or Alzheimer's? The three major mental illnesses combined get a fraction of the research money that goes to Alzheimer's alone. (The disease that gets the smallest fraction is bipolar.) Until more research is done, we won't know what we're looking for when we look at the physical brain; there's early research, but very little, because it's wildly underfunded. All of this is a ripple effect of stigma. The perception that mental illnesses are not "real" illnesses leads to the perception that there's no need to fund research for their treatment, prevention, early identification, and (maybe?) eventual cure. So, research is one step. The more immediate step is to pass parity laws in every state that treat mental health care at the same rate that other care is treated. There needs to be treatment available at far-reduced cost to people without treatment through their employers. And there need to be social service centers that are trained in accessing mental health care for un- or underinsured populations, where the need for mental health care is very high. Finally, and I don't know how this is going to happen, but the medical, nursing, and other professional schools for people going into the care professions need to get a whole lot better. There needs to be far less misdiagnosis, improper medication, and poorly-planned care for people who need these services.

PopCultureJihad: There are testimonies in favor of Electroshock Therapy(ECT) as well as testimonies against it. You've personally experienced this treatment a number of times. You've said it's erased alot of your past memories. Do you feel as though it has helped you and would you recommend it to others?

MARYA: ECT has pulled me out of several severe episodes of mania and depression, and I'd do it again. It is a measure of last resort, and I wouldn't recommend it without knowing that all other efforts to break the episode had failed. But it can really be a life-saver. I do think that I've become more forgetful, and there are parts of my history that are very foggy, but on the balance, I'm glad I'm alive, and I think ECT has kept me that way more than once.

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