Image Credit: National Human Genome Research Institute (NHGRI), part of the National Institutes of Health (NIH)
Interested in the human microbiome? There is an upcoming lecture on this from the Department of Computational Medicine & Bioinformatics (CCMB) as part of their lecture series. (Don’t know much about microbiomes? Introductory information at the end of the post.)
Dynamics of the Microbiome Patrick Schloss
Palmer Commons, Forum Hall (4th Floor)
Wednesday, March 27
3:30 – 4:30 PM
If you don’t know much about the Human Microbiome, or want to have resources to explain it to others, here are some places to start from last week at the Emerging Technologies Librarian blog.
Assuming it to be possible, should organized knowledge, codified understanding, and wisdom play a greater role in the political processes than has so far been the case? Have we perhaps reached limits on how much wisdom can be systematized for use in policy making? Is there such a thing as “wisdom in the wrong hearts”? Evil rulers, cruel tyrants, self-seeking potentates may act wisely on their own behalf but to the detriment of others. If they have at their command a concentrated, organized source of knowledge, understanding, wisdom, then their hold is even harder to break. When is it preferable to use incomplete, imperfect knowledge, understanding, wisdom rather than waiting until such knowledge and its organization is more perfect, though by then the issues may be even more complex? (p. 16)
Comment: One of the aspects of Fred’s work that I most admired was his fervor for illustrating and documenting the potential role of information for good, for positive change, for advocacy, for social welfare, for action. Fred was such a sweet man, so generous and kind to others. This book was published before his most interesting articles in this area, but as a book, it still ended up in my pile of books. I was lucky to get a copy he had inscribed to one of his friends, so you can see some of that sweetness in the inscription.
After Fred’s passing, I watched how the Internet / Web evolved, took shape, formed itself. Over the years, I’ve gone in circles regarding his thoughts in this area. Fred believed that if the general public was given access to the same types of information used by policy makers, decision leaders, and our government, that regular people would indeed select the best information from what was available, and make high quality and well informed decisions on matters of both personal and national importance.
At first, I watched and waited for this to happen. But what happened instead was that all the high quality information was mixed up with biased and inaccurate information, some of which was designed to intentionally mislead. I became disheartened, and thought Fred had been naïve. Little by little, especially watching health information online, I came back around to something closer to Fred’s original optimistic view, which I see as aligning closely with the thoughts of David Brin on the need for diverse views, diverse information sources, and engaged conversations in order to get at truths that may not be popular or credible at the moment they are first proposed. I also see this as respecting the rights of the individual to select their own information sources, make their own choices, and then live with the results of those choice.
The threat to privacy is perhaps the gravest danger of a centralized, coordinated network. Centralization also threatens free competition and the informed choices available to clients, thus weakening quality and competition. It also widens the distance between the server and the client, making servers less responsive to clients and more to one another. Insofar as the service system proposed by Long is aimed at helping the disadvantaged — i.e., those most in need of such help — it is plagued by the basic problem of distrust. … Coordination does not remedy this: those that want business either give poor care, are too expensive, or both. The rare good ones have more cases than they can handle. (p. 5)
Merely to desire to inform is to judge that information is valuable and ought to be more freely available. In fact, that is perhaps in itself the most significant judgment, especially at a time when governments, industry, and social organizations appear increasingly able and willing to impose severe limits on the rights of the citizen to be informed. The desire to provide unbiased information should not be construed as an indifference to values; rather it should be seen as a commitment to the recipient’s right to all pertinent data, as well as the right to make his own judgment. (p. 17)
Comment: Here you see it again. Another book by Fred relating to the same types of concepts, those that led to the birth of the Internet, and shaping our understanding of information access and use as a force for good. Fred really was a formidable thinker in these areas. He is still highly regarded by those who knew him, but is under appreciated by many currently working in spaces that Fred first shaped.
To start off, let’s look at Larry Smarr’s video of how he is studying his own personal microbiome, what he has learned about his own health, and how it has changed his life.
If you are remotely intrigued by what Larry said, then you might want to check into the uBiome project, a citizen science endeavor allowing you to explore your own microbiome.
Now, more videos about the Human Microbiome Project itself. The first is an interview with Dr. Julie Segre, who has oversight of the project; the second from University of Michigan faculty member, Dr. Vincent Young.
The NIH Common Fund’s Human Microbiome Project. No Longer Germ Warfare. An interview with Dr. Julie Segre, NIH Intramural Researcher, The NIH Common Fund’s Human Microbiome Project. http://www.youtube.com/watch?v=LfeNTQxxn0w
Three videos describing more about the concepts behind idea of the human microbiome. One is a lecture from Stanford faculty member Julie Theriot, another by the most expert Julie Segre, and the third just because I like it and find it one that is relatively easy for people to understand.
Last but not least, a selection of videos looking at implications of the human microbiome in specific areas of the body or of our health, from bowels to brain.
If you are still hungry for microbiome videos, Jonathan Eisen has a fantastic collection in a playlist, there is another playlist from Fora.TV at the Compass Summitt conference in 2011, and Yohanan Winogradsky’s entire Youtube channel is devoted to the topic.
It’s a good article, worth a read, and well intentioned, as is the case with most proposals of rating and ranking systems.
I’ve encountered many kitemarking or accreditation systems (“Good Housekeeping Seal of Approval” type of systems) in the area of online health information. I’ve been watching how they’ve worked in the online healthcare environment literally since the birth of the Web. In my opinion, there is not one I trust. Why? Many reasons.
1) They are typically extremely expensive projects to run in terms of time and costs of analysis.
2) Because of the expense, many marks of approval end up charging for their review time. This backfires because it excludes small groups without a lot of money (this might not apply in pharma.) It also gives the impression that the “mark” or seal of approval has been purchased, thus devaluing its credibility.
3) They are slow. The initial review is slow and time consuming. Then they are slow to respond to changes in the organization or their information. Better Business Bureau reviews of charitable organizations has a good way of handling this, with expiration dates, and transparency about when their reviews were run, with the date of approval, and date the company should be re-examined.
4) These programs are often biased, or ill managed. Almost always they are one of these, if not both. Ill managed usually means a volunteer organization that is understaffed or underfunded. They mean well, they try hard, but it is too big a project.
5) Policing is a problem. Some organizations (especially snake oil salesmen) “steal” the mark and place it on their site without the right to do so, and without following appropriate guidelines for the mark’s use.
I don’t name names in public on these issues, because some of the most offensive stories I know of kitemarking abuse in healthcare involve individuals or organizations that are highly litigious, and sadly also highly trusted. They have lots of money or lots of lawyers or both. I don’t. So for years, even decades in some cases, I sit back, silently simmering over trusted sources of online health information that were trusted mostly because they said you should trust them, loudly and frequently. What I usually end up saying in public is, “Who watches the watchers?”, coupled with a recommendation to ALWAYS question healthcare information, both the information and who says it is good or bad, even if it is peer reviewed. You’ve probably already seen RetractionWatch, and are aware of the increasing rate of retractions in science, which is only one indicator that the current peer review system isn’t accomplishing quite what it was intended to do.
What frustrates me, having seen these systems either fail or mislead over and over again, is the conversations still happening NOW, with good-hearted, well-intentioned people proposing these are needed. I’ve been in several of these conversations lately. Sometimes, people didn’t know any kitemarking systems already existed. Sometimes they knew, but were aware the old systems had failed and thought they could make a new one that works. There is a lot of the “If we build it, they will come” mentality that surrounds these. That has NOT worked so far. The librarians, bless their souls, have tried hard to adopt and embrace quality indicators for online health information. They’ve tried to spread the word and inform the public. Librarians have tried to build their own guidelines for vetting online health information. Enormous manhours have gone into developing tools to help with this. Many of them are excellent, but … now well known. And regarding the semi-official kitemarking system, I’ve found even librarians to be mislead by some of these. I’ve had a number of quiet, offline, private conversations when I was particularly deeply worried by enthusiastic endorsement of some of these.
So, what is it that made the Good Housekeeping Seal of Approval the standard to which all other quality ranking / rating systems aspire? The accountability. Good Housekeeping, to this day, says that if a you buy a product they’ve approved and it doesn’t meet the standards, THEY WILL REFUND YOUR MONEY.
Oh. Now, how would that fly in healthcare? Obviously, it can’t. You can’t refund someone’s limb, or pain, or life. How would it fly with information? Again, it can’t. It isn’t a standardized product with measurable units and production. You can’t guarantee that the person consuming the information digests it in the same way as the next person. There is no typical information physiology. Information consumption is too subtle, too personal, too individual of an experience, too filtered by local circumstance and prior experience and expectation.
Frankly, kitemarking without accountability is rather meaningless. If we can’t have accountability behind systems that endorse online health information, what you have is simply opinion. Some opinions are worth more than others. Some people like my opinions, but I make mistakes, too, and would not want to be held accountable legally for some quick blogpost I whipped up in a few minutes or a couple hours. I want people to question what they read, NO MATTER WHO SAID IT OR WHERE. Even if it’s me. And I want people to help each other, to talk with others about the things that matter, to build understanding as a community. I don’t want to put this process in the hands of some official organization. Not for health information. Build communities, not rubber stamps.
I’ve been tracking the Human Microbiome Project for a few years now. I was going to blog about it, and then the New York Times published articles about it, and I assumed that meant I didn’t need to say anything. Last week I was talking with a few friends about the human microbiome, and absolutely blasted their minds into outer space. Not only had they not heard about it, the very idea was hard for them to wrap their minds around. So, here is a very brief intro, grabbing wonderful pieces from other folk. Brief take-aways.
1. Most of our body, say roughly 99% (by cell count), is comprised of critters that don’t have any human DNA. Surprise!
2. The groups of critters, a.k.a. microbes, that make up most of our bodies are surprisingly different from person to person.
3. The whole idea of antibiotics might turn out to be one of those really really bad social experiments, in that while killing the “bad” microbes, the antibiotics are also killing our good ones, the ones that we need to live and be healthy.
4. The research into what microbes make up part of different people, and how this impacts on physical and mental health, is provocative, potentially quite valuable, and extremely complicated.
5. This area of research brings up yet more challenges to the ideas of personal privacy and transparency in healthcare.
“Before the Human Genome Project was completed, some researchers predicted that ~100,000 genes would be found. So, many were surprised and perhaps humbled by the announcement that the human genome contains only ~20,000 protein-coding genes, not much different from the fruitfly genome. However, if the view of what constitutes a human is extended, then it is clear that 100,000 genes is probably an underestimate. The microorganisms that live inside and on humans (known as the microbiota) are estimated to outnumber human somatic and germ cells by a factor of ten. Together, the genomes of these microbial symbionts (collectively defined as the microbiome) provide traits that humans did not need to evolve on their own. If humans are thought of as a composite of microbial and human cells, the human genetic landscape as an aggregate of the genes in the human genome and the microbiome, and human metabolic features as a blend of human and microbial traits, then the picture that emerges is one of a human ‘supraorganism’.”
Elizabeth K. Costello, Christian L. Lauber, Micah Hamady, Noah Fierer, Jeffrey I. Gordon, Rob Knight. Bacterial Community Variation in Human Body Habitats Across Space and Time. Science (18 December 2009) 326(5960):1694-1697. http://www.sciencemag.org/content/326/5960/1694.abstract
“Elucidating the biogeography of bacterial communities on the human body is critical for establishing healthy baselines from which to detect differences associated with diseases. … Within habitats, interpersonal variability was high, whereas individuals exhibited minimal temporal variability. Several skin locations harbored more diverse communities than the gut and mouth, and skin locations differed in their community assembly patterns. These results indicate that our microbiota, although personalized, varies systematically across body habitats and time; such trends may ultimately reveal how microbiome changes cause or prevent disease.”
Chris S. Smillie, Mark B. Smith, Jonathan Friedman, Otto X. Cordero, Lawrence A. David, Eric J. Alm. Ecology drives a global network of gene exchange connecting the human microbiome. Nature 480:241–244 (08 December 2011). http://www.nature.com/nature/journal/v480/n7376/full/nature10571.html
“Horizontal gene transfer (HGT), the acquisition of genetic material from non-parental lineages, is known to be important in bacterial evolution1, 2. In particular, HGT provides rapid access to genetic innovations, allowing traits such as virulence3, antibiotic resistance4 and xenobiotic metabolism5 to spread through the human microbiome. Recent anecdotal studies providing snapshots of active gene flow on the human body have highlighted the need to determine the frequency of such recent transfers and the forces that govern these events4, 5. … We show that within the human microbiome this ecological architecture continues across multiple spatial scales, functional classes and ecological niches with transfer further enriched among bacteria that inhabit the same body site, have the same oxygen tolerance or have the same ability to cause disease. This structure offers a window into the molecular traits that define ecological niches, insight that we use to uncover sources of antibiotic resistance and identify genes associated with the pathology of meningitis and other diseases.”
Kjersti Aagaard, Joseph Petrosino, Wendy Keitel, Mark Watson, James Katancik, Nathalia Garcia, Shital Patel, Mary Cutting, Tessa Madden, Holli Hamilton, Emily Harris, Dirk Gevers, Gina Simone, Pamela McInnes, James Versalovic. The Human Microbiome Project strategy for comprehensive sampling of the human microbiome and why it matters. FASEB Journal March 2013 27(3):1012-1022. http://www.fasebj.org/content/27/3/1012.abstract
“In the future, human microbiomes will be defined at many body sites and during different periods in the human life span. A metagenomic survey alone can describe the microbial communities present, but clinical data are required to understand the factors that affect community composition. Studies must consider the role of sex, diet, race/ethnicity, age, residence location, use of medications, dietary supplements, and hygiene products, and many other factors that shape and cause fluctuations in individual microbiomes. Current NIH-funded demonstration projects are exploring differences in microbial communities and whole metagenomes in disease states.”
As Larry Lessig says, “A political response is possible only when regulation is transparent.” And there’s more than a little irony in the fact that companies whose public ideologies revolve around openness and transparency are so opaque themselves. (p. 229)
Comment:The Filter Bubble is deservedly famous. Like several other books in this post, choosing one quote was a real challenge, there is so much of value in the work as a whole.
The issue is whether or not research and development should continue to proceed solely in the direction of information-dispensing systems. By this we mean the providing of efficient procedures for dispensing pertinent and only pertinent information in immediate response to queries by researchers at the frontiers of their specialty. The stand taken here is to suggest an alternative goal for information-retrieval systems which deserves greater priority than the dispensing of information. This alternative is to assimilate and weld newly generated knowledge into a coherent overall image at sufficient speed, so as to counteract the tendency of knowledge to scatter centrifugally into isolated fragments; to impart understanding rather than dispense information; and to aim to serve primarily the interested nonspecialist and only secondarily the skilled specialist. Whereas the keyword of most enterprises and projects in information retrieval is access, the keywords proposed here as an alternative as evaluation and synthesis. (pp. xi-xii)
Comment: If you only get one book by Fred Kochen, make it this one. Look at this! 1967! And this was when he first collected thoughts that shaped his vision of what became the World Wide Web. In the 1980s, when I took a class with him, he still was requiring portions of this as readings, and it was still mind-blowing. We talked about this collection and the related concepts fairly often, since this is where both of us shared so much intellectual passion and excitement. I was able to share with him one additional piece that he wanted to add to this collection if he ever reworked it, which never happened, due to his unexpected death not long after. The piece I shared was a section of Gordon Dickson’s The Final Encyclopedia, around page 100 and for several pages following, where Dickson first describes the shape and function of the ultimate encyclopedia.
A rough backroom brawler, [Vannevar Bush] inspired public support for pure research and helped to create some of the most terrible weapons ever known. The paradox of his career left him seeking a more benign, even avuncular image. Now the press helped him to construct one. This was no act of generosity; it was difficult for ordinary people to square how the finest among them could be both visionaries and killers, fiercely independent themselves and yet demanding of conformity in others. (pp. 355-356)
Comment: Vannevar Bush’s essential essay, “As We May Think,” electrified me when I first read it, close on the heels of the first article I ever read by Manfred Kochen. Together, they changed my world. This book tells the larger story around Vannevar Bush, giving the context that made his essay possible. I find it fascinating how his life encapsulated many of the conflicting dynamics of science communication with which we continue to struggle.
Vannevar Bush(1890-1973), Understanding American S&T Policy: the emerging crisis in historical perspective [Talk at KAIST(Prof. G. Pascal Zachary)] https://www.youtube.com/watch?v=82QHlhmoQXE
As standards for trustability continue to rise, the companies, brands, and organizations shown to lack trustability will be punished more and more severely. But the sting of the transparency disinfectant will be greatest when the wounds are new. Very soon, for competitive reasons, all businesses, old and new, will beging to respond to the increase in demand for trustability by taking actions that are more worthy of trust from the beginning — that is, actions that are more transparently honest, less self-interested, more competently executed, less controlling, and more responsive to others’ inputs.
Extreme Trust (2012), by Don Peppers and Martha Rogers.
Comment: The concept of extreme trust derives closely from David Brin’s work on transparency, and supports it, in a very earthy, realistic, and practical way.
Bora: The main appeal of the Open Laboratory anthology to the bloggers is that it is a community-based project, and entirely transparent in its execution. … But there is something more to it than just how much bloggers love this book. It is seen as a bridge between the online and the offline worlds. Everyone involved buys extra copies to give to friends and relatives who are not as Web-savvy and may not realize what amazing writing transpires on science blogs. (pp. x-xi)
Jennifer: Far from being irrelevant , science blogging has emerged as an essential activity for science writers as we find ourselves with a professional presence on Twitter, Facebook, and Google+, not to mention “microblogging” platforms like Tumblr. And it’s become an equally essential tool for scientists themselves to connect and communicate with the general public. (p. xiv)
Comment: I love it when I observe similar thoughts being expressed by many different people before those ideas have yet hit mainstream. This signals the gradual emergence of a paradigm shift. In this series of books, the essays and authors they represent, the conference which gives them face to face time, and the enormous numbers of award-winning science books that come from these same authors and are birthed in part on their blogs, in these I believe I see the emergence of a paradigm shift in science publishing and scholarly publishing. Track this. They are important.
Influence, on the other hand, is often the currency that makes social processes work toward helping people attain what they value. Intellectual influences nourish and structure the growth of knowledge. Friendships help people obtain jobs, hearings from people in power, votes, advice, and so forth. “It is not what you know but whom you know that helps you succeed” is not all pejorative. People with great wisdom often also know and are known by a great variety of people. Among these are also included people with even greater wisdom. (p. 195)
Comment: Fred Kochen was one of my mentors in grad school, and probably the one who most strongly influenced my vision of who I wanted to be and what I wanted to be able to accomplish in my career, the WHY rather than the WHAT or HOW. Fred was a true visionary, discussing, many decades ahead of their emergence, many of the issues that have become critical to our most important current debates on social dynamics and structures, information access, and more. He predicted the World Wide Web decades before it happened, and spent much of his career trying to build towards that. I have always found it ironic that he died the same week as the release of the first Web browser, Mosaic 1.0. He was a genius at collecting voices together to emphasize issues that would become important. This book, Decentralization, is one of those collections. Many of the most important ideas expressed in this book are ones he gather from or inspired in others. The thoughts that I’ve distilled from it coalesce in forms that I remember as being from the book, but which were never actually said there. I still find this an important collection.
I wrote a chapter on transparency and privacy for the forthcoming Barbara Fister Festschrift. I mentioned this here before. Monday I got the word that the book is in the final stages and getting closer! I really spent a lot of time on that book chapter, and it was harder to write in many ways than my own book. I ended up with pages and pages of notes and quotations I wanted to use the chapter, roughly five times more pages of notes than actually went into the book chapter. And two very heavy bags of printed articles. And uncounted more downloaded articles. So I came home and took a picture of the stack of books I had kept handy while writing.
Wow. I didn’t manage to fit them all in to the chapter, but they really are wonderful books. Here are just a few tantalizing tidbits from these great thought-provoking works, with (where available) videos of the authors on the same or related concepts. Because when I finished this post, it was as long as a short book, I have broken this up into several posts.
This is a story of clashing ideologies and dizzying technologies. The ideologies did not arise with the popularity of America Online or the merger of Vivendi and Universal. In fact, they are among the oldest ideologies still around: anarchy and oligarchy. … These ideologies are rapidly remaking our global information ecosystem, and the information ecosystem is remaking these ideologies. … Freedom can be terrifying. Cultural and technological trends are increasing freedomg in ways many people find threatening. Yet the reactions (or more accurately “preactions”) to these trends are extreme, ill-considered, and imposed unilaterally without public discussion or deliberation: easy answers to difficult problems. More often than not, we have used technological quick fixes to avoid complex, serious discussion of the dangers posed by the increasing speed and amount of information. (pp. xi-xii)
Comment: I was lucky enough to actually see Siva speak when he came to campus last year to present about his newer book on Google. I had come in late, not realizing how exceptional the presentation would be, and ended up standing in the back of the room in my heavy winter coat, tweeting madly on my phone to try to take notes. At this point I suspect anything he writes is worth a read!
Consider what’s coming. Your genetic code will be imprinted on an ID card … for better and worse. Medicines will be tailored to your genes and will help prevent specific diseases for which you may be at risk. (But … your insurance company and your prospective employer may also find out that you are genetically disposed to, say, heart disease, or breast cancer, or Alzheimer’s.)
Comment: This book does make a number of useful points, and provides a very quick high level synthesis of some of the relevant emerging technologies. Personally, I found the layout (creative graphic design, heavily broken up text, massive amounts of white space) irritating and frustrating. I suspect it was designed to slow down the reader and force them to pay closer attention to the text. In my reading, I felt that the design of the book interacted with the words to undermine the significance of content, to not give sufficient deep thought to the issues raised. I found it a useful exercise, as I was reading in these issues, to read through parts of this and watch for the moments when I wanted to jump up shouting at the author, since those helped me explicitly target some of what I felt needed to be said.
Today is International Women’s Day. I already did a post highlighting a tiny portion of the information being shared around IWD, much of which has centered around issues of violence against women. While I had followed much of the debate around reauthorizing the Violence Against Women Act (VAWA), and cheered when it passed, I didn’t realize that President Obama signed the reauthorization yesterday in connection with IWD activities.
I didn’t expect to cry so much while I watched the video of the reauthorization of the Violence Against Women Act, but listening to the speeches brought back such memories. You see, I was a battered wife back in the 70s, long long before the original passing of VAWA in 1994. Things were different then.
2. Victims and their families have access to the services they need (this includes funding the National Domestic Violence Hotline 1−800−799−SAFE(7233) or TTY 1−800−787−3224)
3. VAWA created positive change.
I’d like to take just a moment and share some personal stories illustrating each of these. What was it like before VAWA, and what does VAWA really mean.
Criminal Justice Response
Just for the record, I was extremely lucky, in very many ways. A couple years afterward, I was on a panel of domestic violence survivors, and realized just how lucky. I wasn’t one of the women who ended up in the hospital, or required facial reconstruction surgery. I didn’t end up with broken bones. I didn’t have children. I was only married a little over a year, so this was a very brief experience. I was an undergrad student, and had access to campus resources that would not have been available to most women. And I got out.
But getting out wasn’t easy. The legislation at the time restricted what service providers were allowed to do in cases of domestic violence. Even if they wanted to do more, their hands were tied. I encountered this over and over.
My husband had been threatening to kill me for years, from the first time I tried to break up with him while we were dating, and throughout our betrothal and marriage. I was used to that. I had tried to get away many times before, but nothing ever worked. I had gotten to the point where threatening to kill me meant very little, because I didn’t care if I died. I actually had tried to kill myself once following an argument with him, because I felt I could not live like this any more. Completely spontaneously, I guzzled a fifth of hard liquor in seconds, and ran upstairs to get the sleeping pills. He realized what I was doing, chased me, and locked me out of the bathroom. I begged for the pills, but he wasn’t going to let me near them, and the moment was past.
My situation went to pieces not long after that, one evening in early Spring. I don’t remember what we were arguing about, but I remember the moment I realized everything had changed. He had shifted beyond threats to action. His whole body spasmed with anger, his face turned red. When he regained control of himself enough to move, he headed upstairs. To our bedroom. Where he kept his collection of knives. I realized he was going to kill me RIGHT THEN. I shouted something snarky up the stairs, hoping it would again immobilize him briefly with rage. While shouting, I quickly threw on my coat, grabbed my purse and backback, and quietly slipped out the front door.
I could head north or south. There was more initial cover to the north, but only for a little ways and then there was nothing but open fields for miles. To the south, it was open fields for about a ten minute walk, and then cover for miles, with campus and resources. I headed south, walking briskly, as fast as I could, hands in my pockets, head down. I had just passed the bridge over the river into the next group of buildings when I heard his bellow of rage. He had figured out I was gone. I shuddered, but kept moving. That night, I slept on a couch in a women’s restroom on campus.
Unfortunately, it all happened so fast, I didn’t even think of trying to grab anything else, and had left my class and work schedule taped to the fridge. The second night, at work, he phoned me.
Since threatening to kill me wasn’t working to control me anymore, he had to find some other threat that would accomplish the same ends. He explained this to me very carefully, and in great detail. He had weapons. He had knives. He had guns. He had ways to get more guns. He would not kill me, oh no. He would kill my family. And my friends. He listed them by name, in the order in which he would kill them, describing how he would kill them. He had a detailed plan, well worked out, credible, possible, doable. And after he killed all of them, he planned to kill himself, but leave me alive. If I didn’t want this to happen, he needed me to come back. That night. He graciously gave me some time to think it over.
First, I phoned my boss at home. I had a crisis on hand, and I could not do what I needed to do and take care of the library. My boss came as fast as she could, and I set to work while she helped patrons.
I phoned the local hotline for help. They could talk to me, and they could make a referral to a counselor to help me cope with my situation. That was all.
I phoned all the numbers they provided, but of course it was evening and no one answered.
I phoned both of our families and as many friends as I could reach, to warn them they might be in danger.
I phoned the police, and relayed his plan. They said there was nothing they could do. I actually remember part of the conversation.
Me (in utter disbelief): But he has GUNS!
Police: “Sorry, ma’am, there’s nothing we can do until he actually shoots someone.”
Me: You think he’ll MISS?!?!
I ended up calling him back, and agreeing to talk to him, but outdoors, not inside. He negotiated. No observers. No family. He knew their cars. Bad things would happen if he saw their cars. I agreed. I phoned my family. They lost it. Someone else HAD to be there! I couldn’t see him alone! My boss offered to be the watcher. He didn’t know her car. Heck, I didn’t know her car. It looked like a large refrigerator on wheels.
He and I talked for a little over an hour, on the street outside our house. It was cold, but not freezing. I shivered a little. The refrigerator on wheels went around the block, over and over and over again. He never noticed. He only looked at me. Eventually, I agreed, miserably, to go back in. I could tell he was past the fit of anger, and would not be violent for a while. I had a little space. I made a couple phone calls and called off the family crisis alert.
That night he held me very gently and very close while he slept. I lay awake for hours.
Access to Services
I was lucky here, too. A few months after I’d married, the stress was already getting to me, and was impacting my health. I was a music major, in composition, and my composition teacher, Gary White, could tell something was wrong, even if he didn’t know what. He insisted that I see a counselor on campus. At that time, I told my husband that my seeing a counselor was a condition of my being allowed to stay a music major. He grumbled, but as long as everything was confidential, he didn’t care what I told the counselor, as long as he didn’t have to go also. That saved my life, already seeing a counselor before the crisis started. And I had access to the counseling free through student services. Again, most women would not have had this. They wouldn’t have had access to counseling, wouldn’t have been able to afford it, wouldn’t have been able to find a way or time or travel to get to the services they needed. My counselor knew the situation. He knew I wasn’t the one who needed to be there, but we kept those weekly appointments just for my safety, as a way to track what was happening.
That cold Spring night was when I realized there was absolutely no way out. I could not protect my friends and family. I could not protect myself. I had asked for help, and exhausted all resources available to me, to no avail. I could not come up with any other ideas or ways to get help. No one I talked to could come up with any ideas I hadn’t already tried, or resources I hadn’t contacted. Someone was going to have to die.
I thought about trying to kill him, but I really didn’t think I could do it. He was freakishly strong, had a large capacity for drugs and alcohol, and slept lightly. I didn’t believe I could catch him off guard; I didn’t believe I had the physical strength to do it; I couldn’t think of a way that would work; and being compulsively honest, I didn’t think I could trick him into taking poison or anything along those lines.
Second choice. Me. If I died, he would have no one to bully. He’d have no reason to kill my family or friends, because he could no longer control me. He still usually allowed me to go to class and work, so there was some freedom of movement. I could pick up my previously aborted impulsive suicide attempt where it left off, but hiding in the woods under a tree somewhere, where it would take days or weeks for someone to find me. All I had to do was pick up the necessary ingredients after work some day and take a detour on the way home.
I explained this logic, and my plan to my counselor. He was unable to find a flaw in either. I told him that given his previous patterns, we probably had a couple weeks before my husband would explode again. Each time now was escalating. If I was going to defuse matters, I couldn’t wait too long. I didn’t want to die, but I was willing to. I did not expect to survive. I expected to die, one way or the other, within a month.
My counselor did all the right things. We knew that I would not be able to hide things from my husband, so whatever was happening needed to happen without my knowing about it. I was asked to sign a piece of paper that I carefully did not read beforehand. Afterward, my counselor contacted both families, and got my parents and my husband’s parents to sign the same paper. I received a phone call, telling me not to go home until a few hours late on one particular day, and to phone our families as soon as I arrived. When I did go home, there was a note on the kitchen table from my husband. The police had taken him away in a straightjacket, and he was on his way to a hospital for observation. It was over, mostly.
There were more services needed, though. I moved out as fast as possible, taking only what belonged clearly to me and had before the wedding, abandoning everything else, even the large things that were mine, like my grandfather’s player piano. His family took responsibility for fixing the townhouse we’d rented. Every wall, door, and window in the place was broken except for the two walls that adjoined the neighbors. It was going to be an enormous expense. I was then, and remain, deeply grateful that his family offered to take care of this. I felt awful later when I realized that doing so had put their family in an insurmountably bad financial situation. You see, it isn’t always just the DV survivor or the survivor’s family who need help. Help is needed for everyone connected with the situation. Both sides of the couple, their families, their friends, all suffer, all need support, all need resources to rebuild their lives.
Positive Change
It took me a while to realize I wasn’t going to die. The whole world was bright and sparkly for a while. I jumped at loud noises. Had nightmares. Shook when something reminded me of things that had happened. But less and less over time.
It might surprise you to hear that I didn’t even realize I was a battered wife until a couple years later when I was working on some added copies in the library. There were several copies being added of the Lenore Walker book, The Battered Woman. I checked one out, read it, and went into shock. When I started telling folk I was a battered wife, everyone looked at me quizzically, and said, “Of course. We knew that.”
I became an advocate, a supporter, someone who shared info about domestic violence with others, spoke on panels, called the police when I heard terrified screaming through the neighbor’s walls.
If I hadn’t survived that month, I wouldn’t be here now. I wouldn’t be helping others. My two kids would never have been born. I try to make it worthwhile for others that I survived. I try to make a difference, to make things matter. But the idea of dying doesn’t scare me as much.
Obama: “[#VAWA] didn’t just change the rules, it changed the culture. It made it possible for people to speak out.” youtube.com/watch?v=LoxL7J…
Obama is right. It’s real. Changing the culture makes a HUGE difference.
When the police took my then husband away in a straightjacket, it made quite an impression on him. Frankly, he had never really understood there was anything wrong with what he was doing. The laws at the time supported that understanding. Being taken away made it crystal clear that this was not OK.
I didn’t stay in touch with either him or his family, although to this day, I still think of them often. From time to time I’d hear something about them. What I heard were things like this.
He lost all his friends.
He never hurt ANYONE ever again.
He made new friends, but very different people.
He worked hard and became a good, decent, law-abiding man.
He was very gentle, soft spoken, kind, but always retiring and unassuming.
At one point, someone asked me if I’d want him back, as the person he had become. I winced, shuddered, and said, sorry, no, I can’t get past what happened. But I wonder if VAWA had been around then, if the culture change had started a couple decades earlier, if my story, and his, might have been completely different, if he might have become the kind gentle person he evidently was somewhere inside before we got to the point of involving crisis services and law enforcement.
DOMESTIC VIOLENCE STATISTICS
“One in every four women will experience domestic violence in her lifetime.
An estimated 1.3 million women are victims of physical assault by an intimate partner each year.
85% of domestic violence victims are women.
Historically, females have been most often victimized by someone they knew.
Females who are 20-24 years of age are at the greatest risk of nonfatal intimate partner violence.
Most cases of domestic violence are never reported to the police.”
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