posted by Amy on Aug 17

Last week I read an article in Mother Jones profiling some of the leading female supporters of the men’s rights movement. Several of them work with people who were abused as children, or with men who feel they have to pay too much child support or have insufficient access to their children. I thought about this article as I followed the Michael Brown case on social media.

In the article, one of the women is quoted as saying there is no such thing as rape culture. She passes the idea off as some kind of mass “rape fantasy” by women who believe they are so sexually desirable that all men want them. This remark exposes a fundamental failure to grasp what rape is.

Rape is not about sex. The rapist is not amorous, he’s angry. He doesn’t desire women, he desires restoration of his own sense of entitlement and mastery. Rape is about control. The rapist sees any woman who dares enter his territory (defined as anywhere he is, including public spaces) as fair game. He can leer at her, jeer, catcall, grope, follow, intimidate, proposition, assault or murder if he chooses. He is an “I,” an agent. She is an “it.” Because she dared take up space, walk, talk, dance, yell, sing, sit, be in his presence, anything that happens is her fault. She is to blame, not he. She asked for it. She shouldn’t have been at that party. She shouldn’t have worn those clothes. She shouldn’t have gone out at night or walked down that side of the street. She provoked him. She’s lying. Boys will be boys.

Rape culture is a culture of control, contempt, domination, and violence. It isn’t about sex, though bodies are its theater of operations and sexuality is one of its tools. And it isn’t just about adult relationships or interactions. Rape culture is an ethos, a worldview. The strong may do as they wish. The weak are prey.

The Twitter hashtag #YesAllWomen that emerged after a rich young white man went on a shooting rampage because he was unable to be a successful “pickup artist” represented an unmasking of rape culture. Not all men rape, but all women are affected by rape culture. And so are all men.

According to one of the women profiled in the article, most violent men were abused by their mothers. That may well be true, but it does nothing to refute feminism or disprove rape culture. Rape is violence, not lust. Feminism is not about allowing the rabbit to start hunting down and eating the wolf. It’s about the lion lying down with the lamb. It’s about ending predation entirely, not switching places. The violent, abusive mother was abused when she was small and helpless. She was objectified, stymied, stultified, negated by someone with power over her. If she doesn’t heal from that, she will take it out on her children, who will, as their mother did, internalize both the victim and the perpetrator. As the saying goes, “hurt people hurt people.”

Feminism, rightly understood, liberates both men and women. It cultivates the agency, efficacy, and humanity of every human being. It is about freedom to be oneself, to occupy space, to move from place to place, to be sassy or shy, bold or timid, fat or thin, gay, straight, male, female, gender nonconforming, black, white, biracial, Asian, Latino/a, or whatever. It’s about walking in the middle of the street with your friend if you want to without interference if you’re not endangering yourself or others. The purpose and function of every human being is to develop, to learn, to love, to create, to be a member of God’s family. Rape culture makes all those capacities and rights contingent on the whim of someone who has more power than you, who has a bullhorn or a gun or fists or a belt. Or a penis.

In the aftermath of the murder of Michael Brown, a young black man, by a white police officer in Ferguson, Missouri on August 9, 2014, my friend Kevin Vetiac wrote in his blog:

Racism killed Michael Brown. Racism that refuses to acknowledge people of color as fully human.  Racism that says people of color are to be humiliated, exploited and kept in their place. Racism that says all black men are dangerous menaces to society who need to be locked up or shot dead. Racism that tells white people to be afraid of all black people everywhere at all times. Racism that makes it OK to shoot first and ask questions later. It is this racism that fuels the American way of life and makes white privilege possible. . . .

I am a person. Do you get that? Do you really get that? I’m fully human just like you. I am not a target.  I am not a dog that can be shot down in the street for no reason. I do not exist to serve you or be subordinate to you in any way so don’t expect me to be submissive to you. I’m going to say that again because you really need to hear this white America. I DO NOT EXIST TO SERVE YOU OR BE SUBORDINATE TO YOU IN ANY WAY. I am made in the image and likeness of God. My blackness is not a curse, it is a blessing.  I will never apologize to you for existing, never.

Kevin is right. And, to a surprisingly great degree, you can substitute “woman” for “black man” and “rape culture” for “racism” in those statements, and they still say something true and profound. Racism and rape culture are essentially the same. Both are based on the premise that some lives, some bodies, matter more than others and that some people, solely by virtue of physical characteristics and/or social location, have the right to exert power over those lesser humans.

U.S. culture automatically gives people who have been assigned the status of “whiteness” advantages, privileges, and immunities over non-whites. That is what is meant by white privilege. A stark example of this is how the presumption of innocence is turned upside down and backwards when either the suspect or the victim is not white. Mike Brown, a black teenager, was unarmed. He had his open hands up in a gesture of surrender when he was gunned down by a white police officer. As Kevin Vetiac said, racism killed him. And Michael Brown is not alone. An astonishing number of black people are routinely killed by white people in this country. And every time it happens, the focus is immediately placed on the character, demeanor, dress, drug habits, and history of the person who was killed. That actually cuts both ways. Mike Brown was about to start post-secondary education, but even though that fact keeps getting repeated, it’s utterly irrelevant. Even if he had just committed a robbery, even if he had just done something violent and heinous, he still did not deserve to be gunned down on the street when he put his hands up and said “Don’t shoot.” If he had been white he would still be alive. I know this because James Holmes, who is white, took weapons of mass destruction into a movie theater and committed murder and mayhem. He was taken into custody alive and unharmed. And Jared Lee Loughner, who is white, and who shot a Congresswoman in the head and killed six other people, was likewise taken alive.

Rape culture decrees that every woman’s (and some men’s) bodily integrity and personal safety are contingent upon the will of someone else. White men do not live with this reality. Not all men are rapists, but all men live in a society where every woman knows this fact. Rape culture, like racism, gives people in dominant positions a license to negate the humanity of those they perceive to be subordinate, and to use and abuse the bodies of those subordinate, objectified people. This domination occurs along a continuum of aggressions and demands for subservience. Strangers tell women on the bus to “smile.” White police officers intimidate and bully black people just because they can. Security officers keep an especially close eye on black shoppers. And men feel entitled to control women, even complete strangers.

Although racism and rape culture are expressed in individual behaviors, they are not solely personal failings or choices. Racist, misogynist, and destructive behaviors are manifestations of the predatory character of the culture as a whole. If you step back you can see that racism, sexism, misogyny, homophobia, domestic violence, militarism, religious intolerance, mass incarceration, and environmental destruction all emanate from the same ethos of objectification and negation. Erich Fromm called it “necrophilia,” or love of death. The desire to control is the desire to extinguish all spontaneity, creativity, unpredictability, rebellion, and differentness. It is, in essence, the desire to kill everything.

The solution is conscientization, a robust word bequeathed to us by the brilliant Brazilian educator Paolo Freire. It means waking up, becoming aware, reclaiming one’s dignity, agency, and personal integrity. It means listening to oppressed people and recognizing them as fully human. And it means becoming aware that all of us have been shaped by the dominant culture and we all carry oppression, racism, and misogyny inside us. All of us are racist and sexist, even those who are targets of the racism or sexism of others. And all oppressors are diminished, limited, and damaged by oppressive systems. Conscientization means learning to act out of love instead of fear. It means relating to oneself and others in new, nonviolent ways. Conscientization occurs as a dialectical, communal process of acting, reflecting, and acting with and for others. Anyone who wants to overcome embedded racism and misogyny must enter into loving, authentic, dialogical relationships with others who are on the same quest. Each teacher is a learner, and each learner teaches. Conscientization is humanization and liberation.

posted by Amy on Jul 24

There’s a woman with whom I do not have a direct relationship, but who is important to people who are important to me. Last fall I noticed she had “unfriended” me on Facebook, and I sent her a text message asking if there was anything we needed to talk about. She replied, “I just don’t have anything to say to you.” That was a little hurtful, but I thought about it and answered honestly, “I have felt that way about you. Eventually my heart softened.” Not long after that I got a friend request from her, and I accepted it. Then a couple of months ago I noticed she had done it again. I haven’t reached out to her this time, and don’t plan to. I may very well have committed some offense–I rub a lot of people the wrong way, especially her–but since I have no idea what that might be, and I still haven’t been let in on the secret, I’m going to leave it at that. We may never see each other again, and if we do we can deal with it in person (or not).

She and I had a pretty good run right after my cancer diagnosis. I know it’s awkward that I’m still alive over three years later, without a known expiration date. It’s easy to bury the hatchet and be nice to someone who’s not long for this world. I don’t think that means her gestures of love, concern, and caring were insincere. I’m sure they were, and I appreciate it. But practices that are useful for acute situations don’t always hold up for the long haul.

I don’t think it’s compassion fatigue. I think it’s bewilderment. I know the feeling. This liminal space can feel like a prison. Later, when I’m likely to be trapped in a failing body that offers fewer and fewer physical and mental capabilities, it will be even worse. Cancer stories used to be about suffering and dying, or about “beating” the cancer and returning to normal. This business of people hanging around for years, often with no visible signs of their illness, is new. We don’t have customs for it. And it doesn’t seem to matter how many times I explain that my cancer is incurable and I’ll be in treatment for the rest of my life. People just don’t get it.

Not long after my cancer diagnosis I figured out that it’s best to stay in the now and take things as they come. It’s a great life skill, and I recommend it highly, especially in the face of death. Denial, a much-maligned but highly useful life skill, plays a huge role too. It’s really better if I just don’t think about it. But staying in the now and living in denial have some distinct limitations. I keep asking myself the same questions about what I want and what I should be doing with my time: Should I keep working on the PhD? (So far, the answer is still yes.) Should I date? (That answer varies. Actually, it varied before I got cancer. It’s just that much more complicated now.) Should I get a pet? (Similar to the dating question: pros and cons. In theory the companionship would be a plus. In practice there are drawbacks.) Should I pursue ordination? (Again, so far, so good.)

But sometimes it all comes crashing down on me and I get depressed. I should make the most of each passing day, hour, minute. But what the hell does that mean? And what’s the point of striving? What matters most? And does any of it really matter? A hundred years from now I’ll be forgotten. Biologically, I’ve done my part with four birth children. That could all come to naught (biologically) too–so far there are no grandchildren or any prospects for them. Beyond passing on genes, I’ll never know if I’ve accomplished anything of lasting value, even indirectly. I’ve always wanted to make a positive difference in the world–whatever that means. Chances are, knitting dishcloths, reading my Twitter feed (over 2,000 followers!) and watching Treme reruns all day are not the best way to do that.

 

posted by Amy on Jun 23

On Friday, June 20, 2014 I participated in a pilgrimage conducted by the Rocky Mountain Annual Conference of the United Methodist Church. Early that morning I and approximately 700 other United Methodists loaded into buses in Pueblo, Colorado and made the journey to the Sand Creek Massacre National Historic Site outside of Eads, Colorado. We went at the invitation of descendants of the people who were attacked without warning before dawn on November 29, 1864. The descendants all know that the Methodist Episcopal Church (predecessor to the United Methodist Church) had an especially significant, and especially shameful, role both in the massacre itself and in the social and historical context out of which the atrocity arose. Most Methodists don’t.

John Evans, the second territorial governor for Colorado, was a Methodist. He believed the “Indian problem” needed a final solution not unlike Hitler’s “Final Solution” for Jews. John Chivington, the leader of the attack, was a Methodist minister. He was the Presiding Elder for the fledgling Methodist congregations that were founded almost simultaneously with the gold rush into the Colorado area that began in 1858. Chivington and Evans were among the first trustees of “First Methodist Episcopal Church of Denver,” which was organized on July 22, 1863. By 1888, this congregation became known as Trinity United Methodist Church, and is still in existence. Chivington was politically ambitious, and he held Indians in extreme contempt. He wanted a brilliant military victory so he could become a general and then a United States Senator. When ordering his troops to kill and scalp everyone in the encampment on Sand Creek, he famously said, “Nits make lice.”

Our bishop, Elaine Stanovsky, has been working diligently since her appointment in 2009 to educate herself and others about Sand Creek. She began blogging about the pilgrimage on January 15, 2014. Here from her first post is her succinct, brutally honest framing of the issues:

The 150th anniversary of the Sand Creek Massacre falls in 2014. On November 29, 1864 Methodist leaders, committed to living in faithful obedience to Jesus Christ, wielding government and military power, planned and led the slaughter of nearly 200 Cheyenne and Arapaho people peacefully encamped where they were promised they would be safe. Many of the victims were women, children and the elderly. For some descendants of the massacre the word “Methodist” means only massacre of innocents. This year we have an opportunity to change that and to enter into a relationship of honor and respect with people who know us only as the source of their scars.

This is a history of atrocity; a history that has been hotly debated for 150 years, despite definitive findings by congressional and military investigations; a history that has been largely untaught in our schools, lost from the consciousness of the church, and distorted in its telling. It is a history in which respected Christian leaders failed utterly to uphold God’s love for creation and Jesus’ promise of abundant life. It is a history that casts a long shadow of doubt that people who bear the name “Christian” or “Methodist” can be trusted to cherish and protect life at all.

[You can find the blog at http://www.mountainskyumc.org/sand-creek-massacre-journey/previous/2. For some reason my software is no longer allowing me to create links to URLs, but I highly recommend that you visit.]

I prepared for the trip by reading three books recommended by Bishop Elaine. My bachelor’s degree is in history, and I welcomed the opportunity to delve deeply into the history of the massacre itself, the lives of some of the key witnesses (especially George Bent, one of four children of William Bent, a white man, and Owl Woman, a daughter of The Cheyenne Keeper of the Sacred Arrows), and the “back story” behind the 2008 establishment of the National Park Service Historic Site. A large percentage of the time allotted to Annual Conference was devoted to educating the attendees about all of this context. A movie about the massacre was shown on each of the thirteen buses that traveled from Pueblo to Eads. Each bus was accompanied by either a Cheyenne or Arapaho person or a historian whose role was to teach and to answer questions. We also watched a National Park Service video at the movie theater in Eads, and had an opportunity to talk to a Park Service representative.

Until last week I had never made the connection between the Civil War and the Indian Wars. Both were caused by the relentless westward expansion of white settlers. The Civil War arose from arguments about whether or not new territories would allow slavery. Chivington was a hero of the battle of Glorietta Pass, where the Union Army stopped the advance of the Confederate army. Sand Creek is listed on a Civil War monument that was erected in 1909 on the grounds of the Colorado State Capitol. The 1950s-era historical marker at the site of the massacre describes it as a “battle.” As the Civil War ended, the U.S. Army was able to dedicate more military resources to protecting wagon trains and white settlements, and to attacking Indians. Sand Creek was the most famous atrocity, but by no means the only one. Four years later, George Armstrong Custer’s Seventh Cavalry attacked a Cheyenne encampment at Washita, killing Black Elk, one of the few “peace chiefs” who survived the Sand Creek Massacre. At every step of this slow-motion genocide, Methodists played significant roles.

The buses took pilgrims to the site in three groups. It was quite hot by the time I got off my bus. Pastors were available to impose ashes on anyone who wanted them, on forehead or hand, as we do on Ash Wednesday, but in the shape of a circle rather than a cross. We also each received a “prayer card” to use as an aid to contemplation or prayer. Each prayer card was different, and we were invited to trade them with other pilgrims. I got a smudge of ashes on my forehead and the first of several prayer cards.

In the heat and wind I walked out to the end of the trail, stopping frequently to look and listen. The large leaves of cottonwood trees blowing in the stiff breeze rattled together loudly. Although it seemed barren and desolate at first, the land actually teemed with life. Little lizards darted across the path, sometimes getting confused about which way they should go to escape all the tramping feet. Birds called from the scrubby brush on either side of the path. Cacti sported large yellow blooms. Dry-looking grass, almost the same color as the sandy soil, grew in clumps all around. Cottonwoods marked the dry creek beds, where their deep roots found underground springs. Since I had done so much background reading, I didn’t need to spend much time with the informational markers along the trail. Several times I swapped prayer cards with other people. When I got to the end of the trail, after standing awhile in silence, I began chanting “Holy God, holy and mighty, holy immortal One have mercy upon us.” Tears rolled down my cheeks as I chanted, and the hot wind dried them. The guide on our bus had told us that her Arapaho spirits don’t speak English, and four octogenarians are the only fluent speakers living on the Southern Arapaho reservation in Oklahoma. I thought, “The spirits don’t speak English, but surely they understand tears, and ‘sighs too deep for words.’” I fervently hoped that they did.

At dinner that night the descendants were asked to reflect on the day. They thanked us for what we had done. They said it helped them. They said it gave them hope. Some said they had found peace. Some said they felt that healing could now begin. I was incredibly moved by their graciousness, gentleness, sincerity, and dignity. Tears kept welling up in my eyes.

There is no way to make amends for the Sand Creek Massacre. It happened because white settlers invaded Indian lands, killed or drove off the buffalo, put up fences, and murdered Indians. Some died quickly by shooting and infectious diseases. Others died more slowly from starvation, whiskey, poverty, and cultural genocide. It was by no means a one-way street. Indians raided, killed, scalped, and terrorized whites. But they were defending their homeland and their way of life. Before white people started taking over land and other resources, relations between the whites and the Cheyenne/Arapaho people had been fairly peaceful. And, of course, the whites had, as Jared Diamond puts it, “guns, germs and steel,” as well as a lot more people.

I, a white person, was born in Denver less than 100 years after the massacre. I went to public schools that taught about “Manifest Destiny” without interrogating its racist, genocidal foundations and its roots in the Catholic Church’s “discovery doctrine,” which unilaterally declared it lawful for Europeans to steal any land not already occupied by “civilized” people, and to slaughter or enslave any “savages.” Cowboy and Indian movies perpetuated the stereotypes of stupid, savage, murderous Indians and their brave, innocent white victims. Nobody told the Indians’ side of the story.

We can’t forge a new path forward without knowing where we’ve been. The descendants were not seeking apologies, and they emphasized that they were not seeking to assign blame or make us ashamed. But they wanted us to know their story. They also wanted us to know that, despite the best efforts of our white ancestors, they survived and they are still here. They spoke of their strength and resilience as a people. They seek recognition as people of equal dignity, people of sacred worth. They want sovereignty. I want that for them too, and I agree that they deserve it.

But they’ve lost so much. I’m especially sorrowful about the impending extinction of the Arapaho language. Language is not just a “tube for communication.” It carries lifeways and culture. It would be tragic to lose the knowledge, wisdom, and goodness embedded in Native ways of life and perspectives on what’s really real and what really matters.

No culture is all good or all bad, and all cultures adapt to specific circumstances and contexts. But we heirs of the European/Enlightenment project of conquering and transforming Creation, treating it as a lifeless machine, have much to learn from peoples who believe that everything the Creator made is alive. As Moses said to the Israelites before they crossed into the Promised Land, “Today I have set before you life and death, blessings and curses. Choose life so that you and your descendants may live.” (Deut 30:19) Our Indian brothers and sisters can help us choose life, for humans, for other creatures, and for the Earth herself. I pray that we put aside our hubris, cure our amnesia, and decide, finally, to choose life.

 

 

 

 

 

 

posted by Amy on Jun 12

I recently got into a pissing contest on Twitter about cancer and cancer treatment. I’m not sure how it started, but some guy was fomenting two of the most common cancer myths: that cancer is caused by having an overly-acidic body from eating the wrong foods and that cancer “feeds on sugar” and you can prevent or cure it by cutting back on sugar. On his profile, and in some of his comments, he completed his cancer conspiracy trifecta with the claim that chemo is nothing but a pharmaceutical company conspiracy and kills people instead of helping them. Twitter is the worst possible place for nuanced and detailed attempts at persuasion, and I doubt anybody ever gets persuaded, but I sometimes wade into arguments anyway. It must be fun for me.

I absolutely do believe we eat too much sugar, other sweeteners, and artificial sweeteners in the U.S. today. Something like 80% of all processed food has added sweeteners. That can’t be good. But the “cancer feeds on sugar” myth is easily busted. Every cell in your body feeds on glucose, which is what the body converts food into. Eating no carbohydrates at all can force the body to burn fat and muscle for energy. That is actually a tested treatment for severe childhood epilepsy, and it used to be the only thing that could be done about Type 1 diabetes (and not for long–you have to have insulin to stay alive.) But humans evolved as omnivores eating a predominately plant-based diet. Plants have carbohydrates, which get converted to glucose in the body. The Twitter guy said somebody who got a Nobel prize in the 1930s “proved” his sugar theory. Thirty seconds on Google was enough to show that the Nobel laureate had done no such thing.

The acid/alkaline hypothesis is just as bogus. You can influence the Ph of your urine (which is how the quacks test your “body”) but the natural acidity of blood doesn’t budge much, and there’s no way to digest food without the very strong stomach acid that we all have. Again, it’s a fine idea to eat lots of fruits, vegetables, and whole grains. The fiber, vitamins, minerals, water, and phytates in those foods are good for you. Have at it. But you stand a good chance of getting cancer anyway, and if you do, you should go see a real doctor and follow her advice.

They used to think cancer was one disease that affected different body parts. Cancer is not one single disease. In fact, breast cancer isn’t a single disease. There are at least fifteen different subtypes of breast cancer, for example. That’s true of every other kind of cancer that I’ve read about. Cancer is caused by a combination of heredity, epigenetic changes, and environment. Cancer starts with gene mutations, and it’s very clever about continuing to mutate and outsmart treatments. Learning about how cancer supports itself, so to speak, gives researchers ideas about designing treatments that can interrupt or reverse those processes. The more it’s researched, in finer and finer detail, the more science is able to figure out exactly what is going on at the cellular level. Since each human being is unique, then everyone’s cancer is also unique. Eventually, cancer treatment will be customized to each person’s specific disease. That is a million miles in the opposite direction from saying [__fill in the blank__] cures cancer or [__fill in the blank__] causes it.

In the meantime, we have to make do with what we have. The standard treatment for breast cancer is “slash, burn and poison” (surgery, radiation, and chemo), plus, since the discovery of Tamoxifen, endocrine therapy for people whose breast cancer is hormone-receptor positive. That’s not because cancer doctors are all sadists, it’s because the evidence shows that people who get those treatments live longer than those who don’t. It doesn’t always work. There are always side effects, and some of them are debilitating. There are also all the usual hazards of being in hospitals–infections, mistakes, etc. But that is no reason to reject the whole enterprise.

The reason we haven’t won the “war on cancer” is the opponent is a shape-shifter, and is incredibly complex. It’s not because science is hiding anything. The woman who leads my support group sends us articles from peer-reviewed medical journals. All you have to do to believe in this complexity, and in the sincerity of the people publishing those articles, is to read a few of them. This is tricky stuff, folks, and highly technical. These people are actual scientists who base their work on facts, not folklore. The competition for research money is fierce, so real cancer researchers are very, very careful in designing experiments and reporting on them, because they are being very carefully watched. It is idiotic to think anything is being suppressed.

Another fallacy that comes up pretty often is the “personal exceptionalism” fallacy. A newly-diagnosed member of my online support group said she was thinking of skipping chemo and radiation. The group is for people who have a subtype of breast cancer that used to be the “bad kind.” Before there were targeted treatments for it, it was very aggressive and deadly. It metastasizes much more readily than other types, even when it’s diagnosed and treated at early stages. The standard of care now is to give chemotherapy plus a targeted treatment. The targeted treatment is not chemo, and it’s not approved to be given all by itself until after a course of chemo has been given. She said she was contemplating this approach because she’s “fiercely independent.” I told her that her cancer is more fiercely independent than she is. I didn’t tell her she’s being an idiot, because that’s rude. But she’s being an idiot.

The most ridiculous thing is not trusting science but trusting some quack with a website and a Paypal account. People accuse real doctors and researchers of being self-interested and untrustworthy, but are perfectly willing to believe the “testimonials” that snake-oil salesmen write to convince people to buy their potions. Even if somebody’s Aunt Edna actually did go into permanent remission after she took some quack’s advice or bought the special vitamins, that’s still not proof of anything. As they say, the plural of anecdote is not evidence.

 

 

posted by Amy on Jun 9

My scan results were, as usual, “mixed.” That can be hard to take, especially the first few times it happens. After some practice, I have decided that the thing I care about most is whether or not there are new lesions. To me, no new lesions, along with not much new at known sites, translates to “stable.” Stable is good. With metastatic cancer, most of the time changes are for the worse. So my scan shows no new lesions, and everything else is either slightly better or slightly worse, which averages out to “stable.”

My oncologist agrees, so for now I’ll stay on the same treatment. I have the information. It’s good news (or at least it’s not bad news). I feel fine physically. And my anxiety level is dropping.

I’m lucky. I’m 60, not 30. I have kids, and they are all adults. They have college degrees. They have each other. They will be OK. I have known people who died from cancer who were not so lucky.

There’s really no point in comparing levels of misfortune and suffering, but everyone seems to do it anyway. My niece told me her father (my brother) justified his treatment of her and her brother by saying he had it worse as a child. Even if that’s true (and how can anyone validly judge another person’s suffering?) what difference does that make? If what he did to them was wrong, then it’s wrong. “Let me tell you what real suffering is like” is a nonstarter.

We all have challenges, misfortunes, setbacks, pain, and suffering. We are all going to die. No one’s life is comparable to anyone else’s. But having metastatic cancer makes it impossible to deny that life truly is not fair. I live in Boston and I have great health insurance. I get state-of-the art medical care, with the newest, best drugs for my disease. Millions of people with cancer worldwide don’t even get pain medication to ease their suffering, never mind treatments that will give them more time with their children, more days of living. That’s not fair.

I’m lucky that I’m able to respond to this disease optimally (under the existing state of knowledge), but I’m terribly unlucky anyway, because I have it. A couple of weeks ago two Facebook friends posted a hoax “article” about how “John” Hopkins had finally revealed the truth about cancer. One of the people who posted it said, “Do this; you’ll live longer.”  Some of the “secrets” were pure nonsense, and the rest was the usual good advice about how to stay healthy–eat more fruits and vegetables and less meat, get some exercise, control stress, etc. Only I’ve always done all those things, and I got cancer anyway. The friend who was pushing that nostrum does none of those things and is obese, sedentary, anxious, depressed, and cancer-free.

I usually end on an positive note. I really am happy about my scan results. I can go back to paying attention to other things that I find more interesting and less scary. Death still rides around on my shoulder, whispering in my ear, but at the moment we have a cease fire.

posted by Amy on Jun 8

One of the interesting new ideas I got from seminary is the concept of “liminal space.” It came up in the context of considering the story of the crucifixion and resurrection of Jesus as a trauma narrative. Seen this way, the Saturday between those two pivotal events takes on new significance. One of the hallmarks of traumatic experience is it gets frozen in time. It isn’t integrated into memory in the same way as non-traumatic events. Also, quite often, the person who experiences trauma has no conscious memory of the event, but only has psychological or physiological signs of having gone through trauma. In liminal space, one feels suspended between the past and the future, in a strange state of expectancy and dread.

Some Christians heavily emphasize the events of Good Friday. Although I have not seen it and have no plans to do so, Mel Gibson’s “The Passion of the Christ” is in that vein. The “restitutionary atonement” theory of salvation holds that Jesus had to suffer and die because there was no other way to pay the price for the iniquity of humankind and redeem all of creation. Many Christians emphasize the resurrection. Death didn’t have the last word. What looked like defeat became a victory. Good triumphed over evil. Jesus is the “first fruits” of the general resurrection when God will make all things new. But there is not a whole lot of scholarship on the second day of the “triduum,” as it’s called.

I do not have a tradition for observing Holy Saturday, the liminal space between the crucifixion and the resurrection, except maybe for finishing shopping for new Easter clothes or dyeing eggs. I don’t recall pastors suggesting devotions or observances for the day. That may have a lot to do with the lack of information on what the followers of Jesus were doing then. It was the Sabbath. Presumably they were praying for their dead leader. They were also undoubtedly terrified. He had been executed. They might very well be next. The crucifixion would have been extremely painful to witness. Their world had come crashing down. Their friend and teacher was tortured and killed in a humiliating and horrific way. It can readily be argued that the reason there are no accounts of the events of that day is no one remembered it.

Real life involves many of these transitions and liminal spaces. That is especially true for residents of Cancerland. About every three months I get a scan. Then a few days later I go see my oncologist and find out what it shows. I had a scan last Thursday, and I’ll see her tomorrow morning to talk about it. I’ve kept worry at bay pretty well this weekend, but now it’s only a few more hours until I find out. I can tell myself it’s just information, it is what it is, but there’s still some sense of cramming for a test. What can I do to be ready? Nothing.

I already know I have metastatic cancer. Compared to the day in May, 2011 when I found that out, this should be a piece of cake. My cancer is either better, worse, or stable. If it’s better or stable, I’ll stay on my current treatment. If it’s worse, we’ll talk about how much worse, and what, if any, changes we will make. I’ve already beaten the odds. Median survival after a diagnosis of metastatic breast cancer is around 23 months. I’ve been at this about 37 months, and I’m doing well. However, with so few exceptions they don’t really count, everyone with this diagnosis is on treatment for the rest of his or her life, and will die from it. So even if I’m “better” it won’t mean that anything much will change. My life will always be organized around treatments and scans until I either die from something else or every available treatment has stopped working. “Beating the odds” doesn’t mean I can count on having a normal lifespan. Every time I’m waiting for scan results that all comes back to me, along with the pain, worry, fear, and trauma of the first diagnosis and the staging.

There’s another sense in which I’m living on a threshold. After six years of deliberately not thinking about life after school, I have put some plans in place. In two weeks I will be commissioned as a Provisional Elder in the Rocky Mountain Annual Conference of the United Methodist Church. (That’s still subject to a final confirmatory vote, but as I understand it, the approval hurdle I cleared last March should suffice). I expect to be “appointed” to school from July 1 through next June 30. That should give me enough time to clear all the remaining hurdles to becoming “ABD” (all but dissertation) in my academic life. Then I plan to return to Denver, get a part-time appointment to a church as its pastor, and get to work writing my dissertation.

When I was in Philadelphia I often felt lonely and isolated, especially after I decided to transfer to another school. It seemed futile to make friends or socialize; I’d be leaving soon. My pastor/mentor convinced me I needed community and human connections regardless of how long I was going to stay. I made some very good friends in Philadelphia, and it feels like a second home town. Now I have cancer perched on my shoulder, and someday I’ll find out that the end is near for me. That’s not likely to happen in the next year, but in any event I’ll be leaving Boston anyway. This “grow where you’re planted” stuff sounds good on paper, but it’s hard to do. Since I am entering ministry in a denomination with a tradition of itinerancy, which means the pastors go wherever the bishop tells them to go, I need to get better at it.

Edited 6/23/14 to correct a spelling error.

 

 

 

 

posted by Amy on May 22

Carl Sagan said, “Particularly today, when so many difficult and complex problems face the human species, the development of broad and powerful thinking is desperately needed. . . . Instead we find. . . an almost reptilian ritualization of the educational process” [Sagan, The Dragons of Eden, 1977]. He said (nearly 40 years ago) that the world needs more polymaths, but seems to be producing fewer and fewer of them. He said (and I agree) that for creative, multidisciplinary competence and mastery to develop in a child, he or she needs to grow up with “little or no pressure for conformity” and with real, rich opportunities to pursue whatever is of interest–no matter what it is–athletics, art, poetry, science, literature, music, philosophy, theology. We need people of vision, with the confidence and understanding to lead us out of the morass of the failed Enlightenment project and into a better, saner, more loving and intelligent world. That is definitely not a priority in the materialistic, market-based, “career or college ready” society of today. We need more Bertrand Russells, Rosemary Radford Reuthers, Wendell Barrys, Howard Thurmans, and Rachel Carsons, and maybe they are out there, but they probably aren’t coming out of public schools, or out of homeschooling that is focused on indoctrinating children into a narrow, reactionary worldview. And, arguably, we’d all be much better off if the bond traders and hedge fund managers and Wall Street market manipulators took up fine arts, or at least quit gaming the economy. What “college and career ready” has gotten us is Lloyd Blankfein and his ilk.

I am a polymath. No brag, just fact. I’m interested in everything, and I always have been. I read all the time, and I always have. I feel blessed and lucky to have spent the last six years in seminary. Theology is a primary discourse. To be a competent theologian, you need to be become acquainted with philosophy, history, sociology, anthropology, psychology, economics, political science, biology, neuroscience, and literature, in addition to the “traditional” seminary courses, and you need to keep thinking about how everything fits together.

Which brings me to the main reason I wanted to write about polymaths. The man who was the subject of my May 4 post gave a talk about two months before he died, and it was posted on YouTube. I just watched it today. The topic was nominally the Puritans and their relationship to the town in which he was living, but he covered a huge amount of ground: Luther and Calvin, Jonathan Edwards, William Faulkner, Perry Miller (his mentor), language, history, American Studies, AA, and William James, among other things. Oh, yes, he also talked about oxytocin. Except for one little segment, where I couldn’t quite follow his train of thought, I was completely on board. And it all relates to what I think I’ll be writing about for my doctoral dissertation.

Now I’m even more sad that he’s gone.

 

 

posted by Amy on May 4

I blogged a few months ago about the joys and foibles of dating at my age. I didn’t actually mention the suitor I liked the best. Maybe I was trying not to jinx it. That, and he had read and commented on my blog. It’s awkward to write about people who might actually read what I say.

Like all the other subjects of my dating essays, I met him through Craigslist. He was staying on Prince Edward Island for the summer, as he had done for many years, so at first we communicated mostly by email. Early on, I said to him, “tell me a story.” This is how he responded:

Once upon a time there was a young man who was going to America to study. Because his stepfather didn’t want to pay for the trip, he pulled strings and the young man ended up as a supernumerary galley boy on a freighter, getting his passage free. The chef, who had worked in a hotel close to the school where the young man grew up, decided to give the young man a hard time. The chef had taken much arrogance and condescension from the boys’ parents over the years and now was payback time. The young man got up at four, helped make coffee and rolls for the crew and then spent the rest of the day preparing food and cleaning up. Day after day he filled the deep sinks with herring bones and scales. He was free at eight o’clock at night. Then he would go up to the forecastle and when the ship plunged down he would leap up in the air and for a few ecstatic moments hang suspended in air, just laughing and laughing in delight. One night he turned around and up on the bridge were officers and crew laughing at the young man who became known on the ship as the Mad Professor.

 One day when the wind was blowing fiercely from the north, the young man took a bucket of herring bodies to throw them overboard. He threw them as far as he could into the wind and there they stood for a fraction of a second. The young man saw what was happening and his right leg began to move but all too late. A second later the herrings, blood, bones and all were plastered all over him.

Best of all was the morning when he opened the door to a sunlit Atlantic with big swells but no stormy waves and saw hundreds of dolphins making their curves , always leaping just at the top of the wave completing the perfect arc of wave and dolphin. One ecstatic moment after another. He asked the chef who by that time had become a good friend if he could stay and the chef permitted him to watch for four hours. Then suddenly, as if at the clap of hands, the dolphins were gone, every one of them.

And still they leap in the young man.

When they got to Newport News, the young man lined up with the crew to go ashore.. He had an inch-thick file. He had his x-rays, his passport, his seaman’s book, his sworn statement that he was not a Communist and would not overthrow the US Government. He had recommendations from the American ambassador to his country and from his professors at the University of LanceauxMeadows, and, most humiliatingly of all, he had his fingerprints, which, in his country, were only taken from criminals. When he came up to the immigration inspector he handed him the file. The inspector looked up at him and asked :”Syphilis?” “No,” the young man stammered and so syphilitic-free he entered the promised land where to paraphrase Robert Lowell who saw his father around every street corner, the young man hoped around every American street corner to find his father. He was now in the company of Barack Obama, and Huck Finn, and Luke Skywalker, and Augie Marsh and all those other lost American boys who were searching for their daddy.

This was quite unexpected, and quite delightful. He wrote to me at first with the pseudonym of “Lance A. Meadows.” That, it turns out, was a clue. From Wikipedia, the source of all useful bits of information:

L’Anse aux Meadows (from the French L’Anse-aux-Méduses or “Jellyfish Cove”) is an archaeological site on the northernmost tip of the island of Newfoundland in the Canadian province of Newfoundland and Labrador. Discovered in 1960, it is the most famous site of a Norse or Viking settlement in North America outside Greenland.

Dating to around the year 1000, L’Anse aux Meadows is the only site widely accepted as evidence of pre-Columbian trans-oceanic contact. It is notable for its possible connection with the attempted colony of Vinland established by Leif Ericson around the same period or, more broadly, with Norse exploration of the Americas. It was named a World Heritage site by UNESCO in 1978.

Later, after we revealed our true names to one another, he sent me a draft of the first few chapters of his memoir. He was originally from Denmark, and the story he told me was autobiographical, making him a modern-day Viking settler. I was a bit concerned about his age–20 years older than I. He was a widower, and he was still very distressed about his wife’s death about 18 months before we “met,” so he was understandably concerned about my health status. Nevertheless, we kept emailing and talking on the phone. We agreed that we were very well matched intellectually, emotionally, and spiritually. We were sure we’d always be good friends.

He had retired from teaching at a Boston area university, but he planned to teach a course there in the spring semester if enough people enrolled. He talked to me about how he was going to teach it. His specialty was early American literature, and he included Indian stories and culture in his definition of “early American.” I thought that was awesome. He also read and critiqued a term paper I was working on over the summer. Later he suggested I write a play about a deeply moving experience I told him about. I did that, as a final project for my Theology and Trauma class. He asked to see it, and he gave me both specific, positive feedback and suggestions for making it better. It was wonderful to have that kind of mentoring and encouragement. No one else has ever done that for me.

Not long after he got back from PEI he took me out to a lovely dinner and gave me a beautiful necklace. I visited him at his house in Annisquam for a weekend in the fall. I enjoyed his company very much. We were friendly, open, and companionable, but not physical. We slept in separate rooms. He cooked for me. We went for walks on the beach with his little dog. He made space for me to get school work done. It was a memorable, joyous weekend.

Then winter break came. He went to Granada, as was his custom. I went to Denver. We kept in touch. In January we met for lunch in Boston. He gave me a beautiful wooden box full of art supplies. I gave him marmalade, homemade bread, and a pair of socks that I knitted for him, the second pair I had made for him. He had big feet, and I knit socks from the top down, so when I got near the end of the second sock I ran out of yarn. Rather than start all over, making the cuffs shorter so there’d be enough yarn for both feet, I finished the second sock with a different color. He loved them, or said he did. He said they made him laugh.

The winter weather was brutal, and the house he was renting was cold, shabby, and drafty. He hated it so much he took to sleeping in a motel, and then he found a different house to rent. I had to go back to Denver in mid-March, and he went to California for two weeks. So he said the earliest we’d see each other again would be April. That made sense.

Then communication dropped off a bit. I emailed to ask if everything was OK. He said he was fine. He was still in California, and busy. About a week later I phoned him. It went straight to voice mail.

A day or so later he hadn’t called back or emailed, so I checked his Facebook page.

There was a lovely photo of him with his eldest granddaughter in California, along with her sad and shocking news that her grandfather had just died. It happened the morning I left that last phone message. He was walking across campus on his way to teach his class, and he simply dropped dead.

His daughter posted on Facebook that there would be a memorial service in the Boston area April 26 or 27, a little over three weeks after he died. On the 25th I checked on Facebook for information, and there was none. So I Googled his name and found an obituary. As I read it, I saw all the things he had told me about himself–his stepchildren and children, his wife who had preceded him in death. Then, at the end, it said he was also survived by a newly-engaged fiancée, naming her. It also said when and where the memorial service would be.

I was very surprised about the engagement.

I went to the memorial service. They handed out a thick booklet containing remembrances and photos. It was a lovely, touching ceremony. The speeches confirmed for me that he had been honest with me about who he was, what he cared about, and what kind of person he was. I had formed an accurate impression of him. That was a relief, under the circumstances. One of his friends, who had been his student years ago, and whom he had told me about, wrote the most revealing essay, and one of the most touching. She said he had been very intense, private, and rather intimidating at first, and that he had evolved over time. She attributed that to his long, happy marriage and family life, and his lifelong quest for spiritual healing and transcendence. She closed by saying:

This slow dismantling of emotional defenses through love, this opening more and more deeply to the pulsating center of all life from which this love blooms, is the essence of the legacy [he] leaves to us. His wish for us would be to open ever more fully to each other, to step out of our fears and risk real closeness, to move through the portal into the bliss which awaits us all and where he is now enfolded.

That’s a good legacy.

His wife was a poet, as was his fiancée. From comments at the memorial service and in the booklet, I gather that the romance blossomed very quickly, early in the year. He proposed one day, not long after he got back from California, and the next day he died. One daughter wrote that he didn’t even tell her about the “last great love of his life.”

I am sad, and I miss him, and I’m very sorry I won’t have more conversations and meals with him, or more encouragement to write and create and minister. I’m going to assume he was planning to tell me about his engagement, and just ran out of time. I didn’t know for sure that I had been moved into a “friend zone,” but I don’t mind. He was a great friend, to me and many others, and his death leaves a gaping hole.

Both his wife’s and his fiancée’s books of poetry are available through Amazon from third-party sellers. I ordered them. I’ll put them on the shelf next to the copy of Women in Praise of the Sacred that he gave me.

The dolphins still leap.

Edited 6/8/14 to change the title.

 

 

posted by Amy on Mar 22

Human beings are story-tellers. Story telling is essential to how we make meaning, and how we pass on culture to subsequent generations. Listen carefully when someone is talking to you about an important event or person. You will hear stories. They won’t always be very interesting, believable, coherent, or uplifting, but when we describe our lives we do it in story form. There’s a setting, a mood, a genre. There are characters. There’s description.There’s some kind of conflict or tension. There’s action that rises. There’s some kind of crisis, reversal, conflict or other peak to the action. Then there’s “falling action” and a denouement, or resolution.

Identity is tied up in story too. In our early years we store up mental models of the world and of the kinds of relationships that are possible. These models are profoundly shaped by how well or how poorly our attachment to significant caregivers goes. The next phase involves collecting images. The next phase is forming ideology. And the final phase, which goes on for the rest of our lives, is narration. Unless we’ve gotten trapped into chaos or rigidity, the stories develop and change as we keep having experiences that validate or refute the original mental models.

If a person or family experiences trauma, narratives become “broken.” A traumatic event gets frozen or encapsulated. It remains unavailable to the part of the brain that integrates experience into a narrative whole, with coherence, plausibility, characters, a plot line, and underlying themes. Instead, it intrudes on the trauma survivor, taking the form of pre-verbal feelings and automatic “fight or flight” reactions. The way trauma is stored, in the body and/or the limbic system instead of in the frontal cortex, inhibits the normal meaning-making and narrative-constructing processes. Broken narratives don’t get reshaped or reworked. They are driven underground, where they indirectly and subconsciously fuel unhealthy behavior. People and family systems remain captive to the broken narratives, and they see no way out.

Neither side of my family had very good stories. A few meager anecdotes got told over and over again. Once in awhile there’d be a hint of something that could have been a founding myth or a cautionary tale, but it would be fragmentary–more like a bullet point than a tale of any sort. Occasionally little tidbits of data broke through the screen that usually obfuscated the past, but they would not be contained in story. I heard rumors about a great uncle, but without any context. An aunt tells of one odd punishment, and how she used her imagination to blunt the force of it. There’s very little else. My mom had three sisters. My dad had one surviving brother and a sister. (His older brother died in infancy, before he was born). I have no idea what kinds of things they and their siblings did as they were growing up. There are brief, sketchy details, characterizations of relationships, but no narration.

We had “no talk” rules about feelings or grievances, and particularly about alcoholism or addiction. Although some triangulation, and lots of gossip, took place, direct questions were discouraged. To this day I don’t know why my father failed to finish his college degree. He got to his fourth year and something happened. I don’t know what. My parents didn’t talk about their jobs or their adult friends. I don’t even know if they had friends. I know for awhile they were in a bowling league. And Mom sometimes sang in the choir at our church.

I am beginning to sort out my own story. I have always had an excellent memory, but there are blank spots. There are some things I can’t even consider thinking about or writing about without triggering a sense of dread. Considering how scary some of the things I do remember are, it makes me wonder what’s been suppressed.

Edited 5/4/2014 to add a missing preposition and correct a misstatement about my father’s siblings.

 

 

 

 

 

posted by Amy on Feb 22

After 9 1/2 months on the new cancer “miracle drug,” called Kadcyla, I’m moving on. I’ve had several scans that showed what could be characterized as “progression,” but until the one I had last Tuesday there were never any new lesions. This time a couple of new places lit up, and some established areas of concern are more active, so my oncologist and I decided I should move on.

I’m not sorry to see Kadcyla go. I’ve had neuropathy, breathing problems, and some other side effects on it. In fact I suspect that the drug might be causing some of the areas of concern in my lungs. In a little over 32 months of cancer treatment I’ve had medications that can cause lung problems for all but 8 months.

I get PET/CT scans. They work by combining the imaging of a CT scan with pictures of areas that are more glucose-avid than surrounding tissue. About an hour before the scan I get injected with radioactive glucose. The machine traces where the glucose goes. Some organs, such as the brain, kidneys and bladder, always suck up glucose. And cancer cells love it.

Increased avidity is not diagnostic of cancer. It just means there’s inflammation. But then you have to decide what might be causing the inflammation. With me, since I have metastatic cancer, that’s a prime suspect. But, as my oncologist said when I met with her Thursday, “we’re treating an image.”

That is, and has always been, the issue with me. I’m a new kind of cancer patient who was diagnosed solely with medical technology–images and biopsies. I feel and look great. I am strong and full of energy. I don’t look or feel sick. I’ve never had any impairment caused by cancer itself, only by the treatment. I don’t get tumor markers in my blood, so I can’t be monitored that way. There is a huge amount of dissonance between the normal ways of assessing health and my true status as someone with a terminal illness. Obviously that is preferable to feeling sick, but it’s also weird. I live in a twilight zone.

I thought I could shake it off and keep forging ahead with all the work I have undertaken as a PhD student and teaching assistant, but because of anxiety about the scan I skipped class last Wednesday. Then Thursday and Friday I did basically nothing except knit. (At least when I knit I make something tangible. It’s better than surfing the web all day.)

I got no treatment at all on Thursday. My oncologist and I had settled on a new course of treatment, but when I went back to see my nurse she explained that one of the drugs is too dangerous to administer through the small veins in a hand. If I’m going to be getting it, I need to get a port. So I’ll go back and talk to my oncologist on Monday, and start something else on Friday.

Thursday night I went to church. (My congregation regularly meets on Thursdays.) I was happy there. Being with people I know and love, moving through the liturgy, thinking about something bigger and more important than myself, singing and praying, brought me joy and peace. I remembered that there’s no cause for alarm. “From dust you were made and to dust you shall return” is oddly comforting. If I do it right, I can pack an entire lifetime of wonder and gratitude into one hour, or even one minute. The “really real” exists outside of time. It’s accessible in every moment of now.

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