Book Review: No Visible Bruises; what we don’t know about Domestic Violence Can Kill Us

It seems like another life sometimes when I handled divorce cases, but it wasn’t that long ago that I regularly worked with clients to develop safety plans. The most dangerous time for a woman and her children is when she is attempting to leave a man, sometimes this means filing for divorce even after years of separation is incredibly dangerous as well because the divorce makes it real.

Let me just stop and say that I’m aware that men are often victims too and that same sex relationships often make bright gender lines even more difficult to draw, but for the sake of this post and the book, the victims of domestic violence that are discussed are female.

Rachel Louise Snyder, in No Visible Bruises; What we don’t know about Domestic Violence Can Kill Us, lays out in chilling detail why the home is literally the most dangerous place for a woman. She shares that while she uses the term “domestic violence,” the correct terminology to capture the entire plethora of issues and experiences is “intimate partner terrorism.” The death toll for women and children rivals the worst wars for casualties and the fact that mass shootings are linked to domestic violence of some kind (either the shooters were victims as children or perpetrators themselves) appears to be something that not many are talking about.

Why women don’t leave is the question everyone asks internally and externally when a women or child is harmed by domestic violence. One partial explanation is that men (and sometimes women) employ “coercive control,” which begins with a variety of activities seem as “grooming” or preparing the target to be abused, and the selection of a person vulnerable to such preparation. While other countries have laws punishing the pattern of behavior that often leads to physical abuse, the United States does not.

The author further states:

Victims who side with their abusers during police calls do not do so out of instability, as many law enforcement officers assume, but out of a measured calculation towards their future safety.

The book illustrates each of these points by recounting a real story of a family where the father escalated from coercive control to violence that took the lives of many of the family. The devastated extended family on both sides were interviewed by the author as the story was put together.

In describing why the victim recanted her story at one point, the author explains:

She recanted to stay alive. She recanted to keep her children alive. Victims stay because they know that any sudden move will provoke the bear.

Victims often view their abusers as being stronger than the system or somehow better able to navigate it, which is further compounded by how the system relies upon the victim to be calm, rational and organized. Most victims of domestic violence are none of these things after a trauma. To expect otherwise, is not reasonable. The personalities, the independence, the personhood of the victims has been whittled away; they are a shadow of their former selves, at times.

As States review the deaths from domestic violence and trace back through the process that the families go through over years and all the people who came into contact with the families, patterns do emerge and some programs have been implemented to close gaps and identify areas of intervention. Each State does this differently and has different issues to deal with. The author, for instance, writes about Montana and how literally everyone has an arsenal at home and regularly openly carries guns. There is an issue in States where it is accepted to carry firearms regularly about how to keep families safe. Additionally, it is often argued that for women to protect themselves, they should arm themselves.

The author debunks this perspective, as follows:

Indeed, this is the single most effective argument I know for why it doesn’t make sense to arm women with guns to protect them against men with guns: because arming a woman with a gun is asking her to behave like a man, to embody the somatic and psychological and cultural experience of a man while simultaneously quelling all that women have been taught. It says to women, if you want to protect yourself from violent men, you need to become violent yourself. To Sinclair, this is exactly the wrong way to the solution. It’s not women who need to learn violence; it’s men who need to learn nonviolence.

Let’s take a small step back from the adult issues and touch on the fact that the vast majority (maybe all of them, but there is probably an outlier somewhere) of batterers and victims have experienced domestic violence in some way as a child. Even if the home is amazing and the violence is at the hands of friends or distant relatives, seeing or experiencing violence when one’s brain is still developing changes that child forever.

Also, the socialization of boys and young men that is pervasive in this country teaches the males among us to behave a certain way towards the world. The author talks about “fatal peril,” which is:

the exact instant when a man’s sense of expectation is most threatened. What the world owes him, what his own sense of self demands. Something challenges him—maybe his partner says something, or does something, and he reacts. Maybe a guy in a bar insults him. Maybe some coworker tells him he fucked up. It’s a split second that changes everything. Eyes narrow, chests pump, fists clench, muscles tense, blood rushes. The body language is almost universal, running across race and class and culture, sometimes even species. A man, a lion, a bear. The body reacts the same way. Fatal peril. A moment that, Jimmy and Donte hope to eventually show these men, is a decision. Violence as a learned behavior. We don’t know it, but we have another word for fatal peril. “Snap.” On the news, the mourning neighbor, the crying coworker: he just snapped. But the snap is a smoke screen, a cliché, a fiction. The snap doesn’t exist.

We can and must do better in our homes and in our country. This kind of socialization begins when we say, “boys will be boys” to excuse bad or violent behavior. This kind of socialization begins when we don’t give our boys the freedom to have and express their emotions. This kind of socialization occurs when we don’t give our boys the language to name their emotions and the tools to handle them.

Without interventions, without education, we are doomed to repeat these same mistakes in the future.

The author cites the TED talk about shame by the amazing Brene Brown in this way …

In the now famous TED talk called “Listening to Shame,” Brene Brown, who calls herself a “vulnerability researcher,” talked about the correlation of shame with violence, depression and aggression, among others. She said shame is “organized by gender.” For women, it’s about a competing set of expectation around family, work, relationships; for men, it’s simply, “do not be perceived as … weak.”

With the rise in the #metoo movement and how many women are moving into positions of power, men are having to confront this more and more. A disturbing trend is the rise in familicide, when a member of a family kills the rest of the family and then themselves. The men who do this are usually white, upper middle class, come from affluent backgrounds but encounter a set back. Rather than face the shame of bankruptcy or losing their status, some choose an entirely different path.

Community

Community is so important for everyone at every stage in life. Community becomes even more important when an illness intrudes into “normal” life or when life changes. When one does not find that community amongst the relationships or groups already in place, then the question becomes, where does one find that community.

There have been a few times in my life where I really needed community and I either found it or didn’t.

The first time I really noticed that I needed community was when I got divorced from my first husband. I struggled to find it. I think part of the issue is that I grew up in a Christian bubble where divorce wasn’t copacetic. So when I got divorced, I was ostracized by the people I thought would accept me. This scarred me, much more than I realized.

When my second husband and I started trying to get pregnant and had to go through fertility treatments, I shunned community. I kept our struggle a secret. I missed out on community. I understand now that that was not the best decision for me and I wish someone had said to me …. you need support and community will make you feel less alone. No one did (that I heard in that moment) and I felt very very alone.

The third time I needed community, I sought it out. This was related to pregnancy and breastfeeding. I found like minded people and I clung to them for dear life. There are so many times when a family experiences pregnancy for the first time and those first few months (whether it’s the 1st or 21st child) that are just brutal. The help we sought out and received was life altering and I’m friends with many of those moms today.

The fourth time that I needed community, when I was diagnosed with terminal cancer, I knew that it was necessary. I’ve gotten involved relatively slowly but I truly understand what being part of a community of men and women who understand can provide and how I can contribute.

The really cool thing is that my experiences with community and the realization that I need that community has been codified in an actual study. Some of the key take aways from that study are as follows:

“In the study, groups of 8-10 women [with metastatic breast cancer] met every week. They discussed their fear, their loneliness, and their anger, as well as their desires and their ways of dealing with the disease. They soon learned one of the most fundamental lessons in life: Everyone is wounded, to a greater or lesser degree, and has learned to be ashamed of it. In these support groups, everyone was seriously affected by disease. There was nothing left to hide. The women could speak out and share their innermost thoughts with one another.

For some of them, it was the first time in their lives they had experienced the reassuring peacefulness of such trust. Quite naturally, something of a miracle occurred then: These meetings were neither tragic nor pathetic, but tended to be filled with natural laughter and camaraderie. It was as if in accepting their own wounds, they had opened the way to positive emotions, to joy, to the desire to be alive, to the satisfaction of being together here and now.

Sometimes, of course, one of them was carried off by the disease. Then the women talked about the loss of their departed friend. They recalled her hearty laugh when she described her husband’s blunders, her watchful faze as another participant explained the difficulties of her last surgery, or the grace she maintained even when in pain. They yielded freely to their feelings of grief. These moments were very difficult, but everyone felt that the absent member would go on living in their hearts through these memories. Implicitly, they sensed that when their turn came they too would be honored by such recollections and live on in their companions’ hearts.”

David Spiegel, MD (Stanford University) & Irvin Yalom, MD (Stanford University) “Effect of Psychosocial Treatment on Survival of Patients with Metastatic Breast Cancer,” Lancet 2, no 8673 (Nov. 18, 1989) — Anticancer by Dr David Servan-Schreiber, Chapter 9: The Anticancer Mind

How beautiful of an example, that once we feel safe and once we are in community, fear is lessened and vulnerability is possible.

Where do you find community?

I get the community I need from online support groups mostly but I can’t undervalue the importance of physical contact. Hugs are super important. Crying with someone who gets you is super important. Community is super important.

Thanksgiving

Thanksgiving is a national holiday in the United States, celebrated yearly on the fourth Thursday of each November. I didn’t know that George Washington issued a proclamation after a request from Congress to recognize the holiday in 1789 but it wasn’t officially declared a holiday until 1863 by Abraham Lincoln.

What is Thanksgiving?

In the US, while it started as a harvest festival, the underlying purpose of taking time to sit back, look over the progress of the year beforehand, acknowledge and appreciate those who made it possible and take a breath, together, has always been present.

Together.

For me, Thanksgiving is about family, about being together, whether or not there is any blood relation. I’ve heard a few times that people without large extended families or when family is not close, will invite friends over for a Friendsgiving. I like that concept.

Sometimes it is hard to think about something to be thankful for when so much is dark about the world and my diagnosis, but there is legitimately always something to be thankful for and I know from experience that cultivating an attitude of thankfulness is important for many reasons.

Am I really making a difference?

Translating the world of living with a terminal illness to the world of the healthy is fraught with pitfalls and odd experiences. Language and details that I’m so used to now feels like a foreign language to healthy people. Yet, despite all of the talking and blogging and sharing articles about how to talk to someone who is dying, I still have inexplicable conversations.

For instance.

A few months ago, I wished someone a happy birthday or something on LinkedIn. This is a person who I knew generally, professionally, but not well personally.

Her response was …. “I hope you are well.”

I sat and looked at her message for a bit. I think I talk about living with a terminal diagnosis an awful lot. So much so that sometimes I do try to dial it back, to not constantly remind people that I’m dying. And then I realized, I haven’t gotten through to everyone.

So, I responded … “well? I’m dying of Stage IV metastatic breast cancer and I will never be well. Think about that in October and think before you pink.”

I was actually rather proud of myself because the first response I drafted in my head was not nice, full of profanity, and had lot of questions that were probably not fair to ask this person. I didn’t send that one. I tried to think hard about who this person is and how little she knows.

Her response? “I’m very sorry to hear that your health hasn’t gotten better.”

Wtf. Literally, wtf.

I just said that I’m terminal, that I’m dying and this is the response? I’m desperately raising money and pressuring people around me to give to the right places and dealing with a whole lot of pain and medication and doctors and she’s surprised that my health hasn’t gotten better?

Sometimes, when something like this happens, I wonder if I’m making any kind of difference with my advocacy. I meet people every day and talk about metastatic breast cancer, I’m used to working hard to educate people. But sometimes it feels like all I’m doing is talking to myself or the people who already know.

Clearly, I’m not as effective as I’d like to be.

So, dear readers, help me. Give me ideas. Tell me what else I could be doing.

I don’t want to just speak to the converted. What should I be doing differently??

Book Review: The Vagina Bible

“Power and health are inseparably linked.”

Dr Jennifer Gunter didn’t say the above quote until the end of the book, but it sums up all of the nitty gritty details she reviews, debunks and explains in exquisite detail. I can’t say enough about how important it is for all people with vaginas and those people who live up close to a vagina to read this book. Yes, the details are good for everyone to know!

One theme throughout the book is Dr Gunter’s disdain for the patriarchy and the efforts by said patriarchy to convince women that their vaginas are dirty, that feminine hygiene products are necessary. News flash, they aren’t! Also, many of the “medication” whether oral or topical that is sold for the vagina is unnecessary or, at worst harmful.

An additional theme, which I’m seeing so much more about recently, is the correlation in the media and popular culture between menopause and all things negative. Women’s bodies change as we age and the powers that be have grasped tight to the idea that women need to be fixed and have sold us a bill of goods that we keep buying and buying and buying.

Bottom line, buy this book! I’ve purchased copies for my nieces and plan to give them out at Christmas. We should all be more informed about our bodies and the miraculous things it can do without help from anyone or anything!

Stop Comparing!!

A little while ago, during the month of Pinktober, Rethink Breast Cancer shared this meme on Instagram.

The mission of Rethink breast cancer is embedded in their name, for people to rethink what breast cancer is and, if I’m allowed to extrapolate a little, to think beyond the pink fluffy stuff touted by the pink machine. They meet that mission in a variety of ways, including sharing factual information like this meme.

There are a lot of memes like this that many of us living with metastatic breast cancer share regularly. I do understand that some of them are shocking. Some of them are designed to be shocking. The shock factor should never be underestimated in terms of making a difference; it often jars people out of complacency.

However.

For purposes of this blog post and my urging for people to stop comparing, the meme is not the story, the comments on the meme are the story.

At first, after the post went up, a few early stage survivors started commenting, talking about how the meme was shocking, that it made them uncomfortable, that they didn’t want to be reminded of their own danger of becoming metastatic. Some of the comments also contained an effort by the same women attempting to share their own experiences, that they too have been indelibly marked by their experiences with breast cancer, that their ongoing side effects have changed their lives forever and that scaring them isn’t accomplishing the goal of recruiting allies.

And then some stage IV women jumped all over them. Minimizing their experiences and shaming several of them for speaking up. Sometimes directly and sometimes covertly, many of the stage IV women objected to early stagers comparing their reality to the reality those of us with Stage IV live in all the time.

I’ve written quite often about how I feel ignored and sidelined by not only the charities focus on early stagers only but also how many in the breast cancer community who had/have early stage breast cancer are antagonistic towards those of us who are dying. My experiences, while not universal, contains some themes that resonate with many metastatic patients; for instance, the often significant divide between early stagers and those of us who are metastatic.

I don’t write about these things to shame anyone but to bring awareness and to hopefully encourage everyone to do better next time.

What hurt my heart about the exchanges in the comments on this meme on that particular day was the decided lack of empathy and compassion on both sides. Comparing does that. To compare your position to that of another person is literally preventing both parties from fully seeing the other person’s reality.

Are the experiences of metastatic patients worse? Maybe.

Is it horrible to be dying and watching your friends dying all around you? Absolutely.

Is it horrible to have your life upended? To no longer recognize yourself in the mirror? Absolutely.

Do many of the early stagers experience the same side effects as those of us who are metastatic? Yes!

What drove these points home for me was a public exchange in the comments between two friends of mine. These women didn’t know that I know both of them and I wasn’t planning to insert myself into the discussion until I saw one of my metastatic friends comparing the experiences of the metastatic patient to my early stage friend’s attempt to show how her life has been indelibly impacted.

Both of these women have had different experiences with cancer and yet both of them are living with the consequences of breast cancer, the treatment for breast cancer and figuring out how to have a new/different life afterwards. Yes, my metastatic friend has a terminal diagnosis and watches friends die every day. Yes, my early stage friend will probably outlive both of us and she knows that.

I commented on the exchange, highlighting my relationships with both of them and affirming how my early stage friend is an ally to the metastatic community.

Because she is. She’s one of the women who has experienced early stage breast cancer, who knows her risk of becoming metastatic, and who leans into the issues that we metsters face.

We need to recruit men and women who have been touched by breast cancer who will outlive those of us who are dying. This is the obvious consequence of dealing with a terminal diagnosis. It means our life expectancies are cut horribly short.

Compassion and empathy are more important than winning the comparison game.

STOP COMPARING!!

Reflecting on 3 Cycles of Piqray

We’re halfway through November, 2019, and I just picked up my fourth cycle of Piqray from the specialty pharmacy at my cancer center yesterday.  I also found out yesterday that my first PET scan since starting Piqray demonstrated that my cancer has had a partial response to the medication over the past three months. While I’m not satisfied with partial (because I want the whole enchilada), it’s definitely better than hearing progression again.

It’s a good place to be, three cycles in, to know that the medication appears to be working.  At this point, here’s an update of where I’m at with the experience of Piqray:

  1. Sticking to a low carb, keto-like diet has been helpful to support the efficacy of the medication and keep my sugar levels in the right range.  When I’ve cheated, my body has absolutely let me know.
  2. The nausea is here to stay, it’s low level, thank God, and manageable, but I do have to eat like a pregnant person.  Lots of little, protein rich, meals throughout the day and I keep my ginger ale handy.
  3. I spent a lot of time trying to figure out Metformin and how to tolerate Metformin and then, my medical oncologist ran across thisletter to the editor in the New England Journal of Medicine and now I’m on Jardance instead.  The side effects seem generally the same but I’m still adjusting to a new medication.  I’ve reached out to Novartis to see if theirrecommendations will change and haven’t heard anything yet.  
  4. The rash so many people struggle with has not shown up, but I do still have a lot of dry skin.  I pretty much have the skin on my face under control, but inside my nose is still super dry and easily irritated.  I’m still taking Claritin every day and will continue to do so–that’s also probably contributing to the dryness in my nose!
  5. Piqray is still a very weird name.

I’ve a meeting planned with Novartis next month at the San Antonio Breast Cancer Symposium, so let me know if you have any questions about Piqray and I’ll be sure to pass them along and then get them answered and disseminated.