Archive for the ‘Uncategorized’ Category

posted by Amy on Aug 20

Attachment disordered people often have eating disorders. Some of them are sugar addicts. Some are overweight. Some work out obsessively. Some become fixated on the “purity” of what they ingest. Some hoard food. Many keep trying reducing diets and regaining all the weight they lost after the diets inevitably fail. Some either overeat or forget to eat when they are under additional stress. Many, including me, cycle through some combination of those and other food addictions.

I am attachment disordered. I have been healing from it, slowly, for about thirty years. But I periodically seek counseling to help me overcome plateaus or roadblocks. In my most recent counseling relationship, I figured out that I simply can’t tolerate feeling hungry, and I connected that to my insecure attachment. Once I had that insight, I began to play, gently, with not doing anything right away when I notice hunger pangs. It’s not an emergency. There is no tiger. I also started experimenting with whether my hunger can be satisfied with less food: one slice of toast and one egg instead of two of each; half as much cereal; smaller portions (in smaller dishes.) And, when I remember to do it, I try to be more mindful when I eat–saying grace, deliberately slowing down my chewing and noticing how the food looks, tastes, and smells.

There’s no “discipline” in this. I didn’t tell myself I “have” to eat smaller portions, or wait awhile to eat after I notice I’m hungry, or eat mindfully. I have no “forbidden” foods. The key was noticing that for me, hunger triggers a gut-level and largely unconscious sense of impending disaster. Once I became aware of that, I could deliberately choose to tell myself new stories about what’s going on. It was never a “weight loss plan.” It was an effort to shore up a weak spot in my development. It’s the only change I made, yet over a period of four or five months I began to shed some excess body fat.

People heal from attachment disorder through “corrective emotional experiences.” I believe that Twelve Step recovery programs heal attachment disorder (which I believe is the cause of addictive behaviors) by helping people become attached to a Higher Power and to their sponsors. Over time, this builds Basic Trust and helps one come to have compassion and empathy, for oneself and for others. My food issues come from insecurity and distrust. I don’t know specifically what caused that, but I don’t need to know.

Part of the inspiration for this post was a question raised by a clergy colleague. He said a women’s group in his church wants to do a book study on a “Christian weight loss” book that he thought was problematic. I did a quick search on Google and again on a religious book website. I found many health, fitness, and weight control books, but they all seemed to be in the “What Would Jesus Eat” or “Pray Away All Your Problems” categories, which I find theologically and psychologically suspect.

But I do think small groups and spirituality can help people become healthier. Humans are inescapably social. Our self-concept and our behavior are formed in relation to others. Further, the human mind is not separate from the body. What we eat, how we eat, and when or why we eat is part of complex feedback loops influenced by our hormones, our body chemistry, and our personal (social) history. Whatever the current state of your mind and body, it is a system in homeostasis. The way you are right now “functions” in some sense. For example, the vast majority of morbidly obese people have a history of childhood incest. What better way to protect one’s body from unwanted attention and touch than to encase it in a protective layer of fat? Simply eliminating the excess weight, such as through bariatric surgery, doesn’t do anything to heal that, so it will fail.

It could be argued that the way to motivate people to heal is for them to have an easily quantifiable objective: Get married within a year; lose four pounds a month for a year; run a marathon. I have gotten a lot done with setting goals and planning ways to meet them. But since that approach didn’t get at the reasons I was judging myself and punishing myself, there was no happiness or satisfaction in attaining a goal. Obsessive, compulsive, and/or addictive behaviors took over in all the areas of my life that I wanted to improve.

Christianity teaches that the highest law is to love God and neighbor. If I were evaluating a small group curriculum, I think that would be my main criterion. If I could find a “Christian” weight loss book that helped people love God, themselves, and other people more or better, I’d probably approve it. But I might focus more on how the group itself functions. Do the members get to know one another intimately? Do the things they do together in their group help them feel more connected with God and with one another? Does the group help its members experience a more abundant life?

 

posted by Amy on Aug 16

In mid-July my oncologist and I agreed I should stop taking the oral chemo I had been on since the preceding December and go back on Abraxane, which I took when I was first diagnosed, and which, along with an antibody drug, cured my liver metastases. We made this decision hoping that the small amount of active cancer in my body can be cleared away in three to six months. If that happens, then I can stay stable and healthy for a long time with just two antibody drugs, which I tolerate very well and which have few side effects. We are acting from a position of strength. Arguably, I was sufficiently stable on the oral chemo that I could have stayed on it.

Abraxane causes hair loss. This time around my hair loss was quite rapid. One day after the second infusion (three weeks and one day after the first infusion) I had my head shaved because I was tired of molting clumps of hair wherever I went.

People tend to think you’re “in remission” if you have hair and you’re “back on chemo” if you suddenly go bald. I overheard a cousin telling someone my cancer had come back. In fact, it never went away. I’ve been under treatment constantly since June, 2011. I have been on at least one antibody drug the whole time and on some other kind of medication in addition to antibodies for all but six months. I get infusions every three weeks, and PET scans about every three months.

Most likely, I will continue to be under treatment until my cancer becomes uncontrollable (or until I die from some other cause.) Stage IV cancer is (still) incurable. The goal of treatment is to control it as well as possible for as long as possible with the best quality of life possible. I’ve had this “incurable but treatable” illness for over four years, and so far I’m a poster child for the new “cancer as a chronic illness” phenomenon.

Maybe there should be another term for it. At the moment “Stage IV” is synonymous with “terminal,” “end stage,” and “advanced.” Once a solid tumor cancer spreads to other parts of the body that’s the end of the line. There’s no “Stage V.” But there’s an obvious difference between someone like me, who’s still basically healthy (except for the cancer. . . ) and someone in hospice a few weeks or months before she dies.

Although I’m doing well physically right now, I’ve seen a lot of people with breast cancer go from “doing well” to “it’s all over” in relatively short order. There is no way to predict when and how I’ll make that transition. Just don’t make any assumptions about my health from how I look or how much hair I have. Right now I have the colorful headscarves and knitted chemo caps, but I’m doing much better than those “traditional” signifiers of cancer might indicate. Some time in the future I might have a full head of hair and look fine, but be close to the end.

Come to think of it, since all humans are mortal, that actually applies to everyone. Life is short and uncertain, so go ahead and be more kind than you absolutely have to be. Because you never know.

 

 

 

posted by Amy on Apr 12

I belong to a support group for women with advanced cancer that meets every other Monday at the hospital where I’m treated. The group is facilitated by a wise, witty, funny, caring woman named Hester Hill. Hester’s office is in the same suite as the hematology/oncology suite, so it’s convenient for patients, but anyone can come to the sessions whether they get their treatment there or not. There is no charge for attending the group.

Cancer is clever. It begins with mutations and it keeps on mutating. Once they metastasize, most cancers eventually outsmart all available treatments. For some cancers there can be a fairly long interval between diagnosis and the day the cancer ultimately has the last word in the story. I know a few people with stage 4 breast cancer who are still alive ten or more years after they were diagnosed. But people with lung cancer usually only last a year or two with treatment.

Obviously, the one thing a group of advanced cancer patients has in common is we’re all going to die from our disease. Two of our members who had lung cancer both died recently. One was Jewish, and died the morning of the first day of Passover. One was Christian and died in her husband’s arms on Easter. Neither of them had been coming to group recently, but once a member always a member. These losses were not unexpected, but they are still indescribably painful. Why would I, or anyone facing her own grim cancer diagnosis, willingly make friends with other people who are going to die? Doesn’t that just make living with cancer all the more difficult?

It’s difficult anyway. It would be worse if I tried to do it alone. I have gotten support, encouragement, sympathy, useful information, and joy (yes, joy!) from the group. I have also been able to love and serve others. I have gone from being a scared, stunned newcomer to being one of the role models. A few years ago several of us wrote entries for a “book of writings” that was published in connection with an annual event. Writing my own essays, and reading what others wrote, were profoundly moving and illuminating. Especially in our culture, which seems to be based on avoiding death at all costs, it’s healing to find companions who are willing to help each other face the truth and keep dancing with it. It really is better to have loved and lost than never to have loved. It’s better to realize that not only is there no time like the present, there really is no time BUT the present. Here, now, I’m alive. I can think, feel, pray, learn, knit, read, and write. The things I create–what I write and what I craft–are my legacy.

Hester writes a daily(!) blog. Last Monday she wrote about our latest losses, and about our group. She says, in part, “I feel especially tender about my relationships with women who attend my group for women with advanced cancer. It is remarkable to watch them care for each other and teach how to live in the looming presence of death.” Her post about losing these two women is wise, wonderful and illuminating. You can read it here.

Last night I watched the third episode of The Emperor of All Maladies on PBS. It’s called “Finding the Achilles Heel.” It deals with ongoing advances in treating cancer, but it also shows a remarkable young oncologist talking to two of her patients about death. One is an older man who seems quite ill and frail. She gently suggests they stop treatment and try to get him well enough to go home, and then decide if he wants to try more chemotherapy. Another is a woman who has just been diagnosed with lung cancer. Rather than mislead her, the doctor gives it to her straight. Lung cancer is treatable but not curable. Treatment will buy her time, but not a whole lot. The patient is sad and shocked, but she says she’s grateful for the information. This way she can figure out her priorities for the time she has left, and live as well as possible under the circumstances.

 

posted by Amy on Apr 9

I had “departed from myself”(a phrase from the story of the Prodigal Son) so early in childhood that I was unaware of how inauthentic my life was. My family of origin lived in a story of life, love and God that left me in a constant state of anxiety and fear. I had no foundation, no anchor, except my own self-reliance and self-will. I did not trust anyone because I didn’t know anyone trustworthy. To me, love meant pain, suffering, punishment and abandonment. “God is love” was not a very comforting idea in that context. Neither was the idea of God as a parent.

But I changed. At any given moment the life I have, and my character, are the result of my past and present practices. By practices I mean embodied actions including speech, and by speech I also mean self-talk. I change every day. The stories I tell myself about my life, about my intentions and purposes, and about God, shape the way I receive and integrate each new experience as it occurs. The people I hang out with, and the ways I interact with them, also change me from day to day. My practices form me spiritually, for good or ill. Slowly, over many years, I began living in a different story. Returning to church in 1985 after a 15 year hiatus was a major reason that I changed.

At its best, and when it is most faithful to the Gospel, Christianity lives in a counter-cultural story which is passed on through its practices. The Gospel replaces idolatry with holiness, competition and enmity with love, self-centeredness with adoration of and submission to God, and tribal identity with an expansive view of all humanity and all creation as being under the dominion of Christ as the Lord of all.  This happens primarily through ritual. People go to church and say things, do things, hear things, and think things that make them part of a story of love and grace as members of God’s family. Participants in worship and Christian education experience falling short or missing the mark, confessing, being forgiven, remembering they belong to God, and going out to practice love of God and neighbor.

The life I have now is the life I have designed for myself and have spoken into existence in concert with the people around me. If I want a better life—more joy, peace, beauty, patience, kindness, forgiveness, love, and light, then I have to do physical things that will prepare me to receive God’s sanctifying grace. If I am not experiencing the abundant life that Jesus promised, if I do not see the fruits of the Spirit in my character, and if I want those things, then I have to change what I do. God gives the growth, but I must do my part. I think that’s what Jesus meant by telling us to seek the kingdom of God first, and by saying we have to give up our life to find it. The interesting thing is how it works. It is not necessary to think it all through first. It is not even necessary to believe or understand. All you have to do is show up and pay attention. All you have to do is act as if it might be true. Ron Sider tells of taking an atheist on a mission trip. He agreed to let the young man go, on condition that he participate in all the activities, including prayer and worship. By the end of the trip, the atheist believed in God.

As I kept showing up, going through the motions, and paying attention, it began to sink in that I am God’s precious, unique daughter, that my body is a temple, and that God has a purpose for me. How would God’s precious daughter conduct herself? How would she expect other sons and daughters of God to treat her? How would she speak? I began paying attention to God outside of church. I would pray to God to make me a better mother, lawyer, and wife. When problems arose I would remember that a Love/Intelligence far greater than I can completely grasp was there to help me. Sometimes I would just sit and wait for a good idea. More and more, I felt befriended.

Just making the effort to get up, get ready and show up at church every Sunday morning is an enormously significant and important practice. When I first began taking my kids to church in the mid-80s I started out deciding every week if we would go or not. It soon became apparent that it would be easier on all of us if I just made it a habit, like going to work every Monday through Friday. Occasionally we would do something else on a Sunday morning. I noticed that the weeks I didn’t go to church on Sunday just didn’t go as well. Putting God first one day a week somehow changed everything else. Maybe I’d be more patient or kind. Maybe I’d be more sensitive to injustice. Maybe I’d just be more calm. This new way of living was like a plant that needed to be watered every week.

Sometimes it was the sermon. A good sermon makes you think. It sticks with you all week and asks you questions. You examine your assumptions. You hear something that burrows in and keeps nagging. Sometimes it nags in a good way, for example, if I hear that “There is no fear in love,” then I might figure out that somebody trying to control me with threats may not really be acting out of love. Often it was the music. I am especially attuned to music. I usually have a song running through my head. When I added the practice of showing up for choir I added the dimension of the discipline of studying music and of striving for excellence. We worked hard and did the very best we could to transmit the composer’s intention because we understood ourselves to be worship leaders. The choir’s motto was the same as Bach’s, soli Deo gloria¸ to God alone the glory. I once had the privilege of taking a group lesson from a renowned choir director. He said, “Nobody worships during a bad anthem.” I would add that some people only worship during the anthem. The choir is especially mindful of those people.

Components of the practice of showing up:

Keep doing it

Pay attention

Take yourself seriously

Take other people seriously

Understand that a relationship requires time on task and physical presence.

posted by Amy on Mar 28

I live in three-month intervals between PET scans. When I get a “good” scan I can quit worrying and go back to pretending I’m perfectly healthy. My latest scan showed that my cancer is stable: no new lesions, and not a whole lot of change in the size or glucose avidity of the areas we’ve been watching. That’s excellent and happy news.

I was worried about this scan because just a couple of weeks before I went in to get it I began getting markedly more winded when climbing stairs or hills. Admittedly I’m overweight and out of shape, but the change was sudden, and came on for no apparent reason. I was also experiencing unusual levels of fatigue. And the voice production problem I’ve been having for about 16 months was getting worse. Sometimes while talking or singing I run out of air abruptly, and the sound cuts out. That was an acute problem a year ago and had gotten quite a bit better, until recently.

About a month before the scan I went to a cabin in Vermont for the weekend. It was a lovely retreat, but there was a lot of wood smoke, and I’m allergic to smoke. Then two weeks before the scan I spent three nights and four days in a building that has what I assume is mold contamination. I am extremely sensitive to mold, and I had a severe histamine reaction. My nose ran like a faucet. My head hurt, my body ached, I was exhausted, and I was coughing and congested.

I had the scan on March 20 and got the results on March 23. The report said that an area in the lower lobe of my left lung had collapsed because of pressure from the inflamed tissue in that area. Ah! A collapsed lung! That could explain the breathing and voice production problems.

The December scan report was the first one to label the inflamed areas in my lower lungs as “neoplasms,” and the first to describe “atelectasis” in the lung. When I read that report I emailed my oncologist and her assistant to say,

As thrilled as I am overall with my latest PET report, reading it reminds me that there is still some unfinished business with the pneumonia, interstitial lung disease, pneumonitis, or whatever you want to call it in the lower lobes of my lungs. This radiologist calls them “neoplasms” and concludes that it’s a tumor causing the atelectasis. He might be right, but he’s not basing that on a definitive diagnosis. As Dr. W said about a year ago, we’re treating an image.

I think I should have a workup done by a pulmonologist (one who doesn’t simply assume he/she knows what it is without investigating). That inflammation might be a chronic infection. Even if it’s cancer, given the good responses in other parts of my body, maybe we should think about local treatment. And in any case I’d like to have a plan for clearing out the goo and reducing or stopping the coughing.

Although my oncologist responded, “I agree,” nothing happened. When I met with her assistant on March 23 to talk about the next scan report I again said I wanted to be referred to a pulmonologist. I said my breathing had gotten worse, and I was experiencing fatigue. I said I was concerned about my collapsed lung. She said she’d talk to Dr. W and get back to me, but she didn’t. She also pushed back on my idea about local treatment for the cancer. She said that isn’t done with Stage IV cancer. I told her I know there is research showing that surgical removal of lung metastases prolongs survival. The next day I sent Dr. W a follow-up email that said,

I want to preserve lung function and breathe better, cough less. That may involve treating the inflammation and/or blocked airways. That might entail physical therapy. That might involve some kind of local treatment of cancer in my lower lobes. We don’t actually know what all is going on. . . . [but we do know that] (a) all the cancer drugs I’ve been on can cause lung damage (and so can GERD), (b) Kadcyla seems to have been the hardest on me, and the other side effects it caused are only now resolving, over a year after I quit taking it, and (c) it’s possible I have some other, or additional, disease or condition that’s causing (or exacerbating) the pneumonitis besides cancer.

I went to my primary care provider and got a referral to a pulmonologist. She cautioned me that it might not be possible to “fix” whatever the problem is. I said I understand that, but since we don’t really know for sure what the problem is, it is irresponsible to conclude that it’s not fixable. In any event, I am entitled to palliative care. I then called and scheduled an appointment for March 30 in the pulmonolgy department of the hospital where I am being treated for cancer.

In the meantime, I Googled atelectasis and learned that it can be helpful to: sit up straight, breathe deeply, and cough deeply. I also read something that made me decide to try periodically taking a deep breath and then holding it while thumping with my fist all around my ribcage on the left side. I do this “thumping” when I notice my exhales have become “ragged” or when I have a voice production problem. It usually makes me cough up some goo. My yoga teacher also suggested things I can do to improve my posture and my core strength, to keep from compressing my lungs.

Whether from those efforts or just because I’m farther out from the last allergic reaction, I am already getting better. My ability to climb stairs without stopping to catch my breath has returned. (That’s especially important because to get from the trolley to my front door I have to climb 93 steep stairs.) More dramatically, my singing is the best it’s been in over a year. My voice is stronger and clearer, it’s not cutting out, and I’m more easily hitting the high notes.

I don’t think Dr. W has been stonewalling me on this issue. I just think she’s too busy with her other work. But this is not the first time I’ve noticed that I’m far more interested in my health than anyone else is. I don’t find that scandalous or surprising, and I’m good at looking out for my own interests. But what about people who don’t have three college degrees or who have been acculturated to defer to and obey people in white coats?

With the internet it’s both easier and harder to be one’s own advocate now than it used to be. On the plus side, there’s a lot of good information, such as the article from the Mayo Clinic that I found about atelectasis. On the other hand, there is every sort of charlatan, flake, con artist, conspiracy theorist and snake oil salesperson on the web, and the stuff they put up is totally unfiltered and unregulated. Health care professionals probably hear all kinds of wacky things that patients found online, and no doubt get tired of debunking it all.

I did get just the slightest hint from both the oncologist’s assistant and my own primary care provider (a Nurse Practitioner) that they think I might be in denial. I’m not. I know I have Stage IV breast cancer. I know I’m most likely going to die from it eventually. But that doesn’t mean I shouldn’t keep trying for the best possible quality of life I can have. I’m not alone in my assessment. Dr. W has also expressed puzzlement about what’s going on and has shown interest in getting more information.

A PET scan is a good but blunt tool. It shows where there is inflammation, but it can’t distinguish between different kinds of inflammation. For example, I have a nodule on one side of my thyroid that also lights up on PET scans. It has been biopsied and found to be benign, yet it displays glucose avidity that “waxes and wanes,” to quote one radiologist. When, two years ago, I asked to have a biopsy of the left lower lung lobe, the cancer board originally said no, because it didn’t look like cancer. Then they agreed. The biopsy was positive, but the report said the cancer cells were “scant.” I know people shouldn’t go around getting biopsies willy-nilly, but I think it might be time to revisit that question.

In the meantime, I’ll keep working on my breathing, and hoping for the best.

 

posted by Amy on Mar 21

One of my professors maintains, quite stoutly (and rather often), that theology and the wisdom traditions have a great deal to contribute to solving the enormous challenges and difficulties of modern life, but theologians are nowhere to be found in policy making or planning processes. Not only is theology no longer considered the “queen of the sciences,” theologians are routinely mocked and marginalized. Theologians talk only to each other or, sometimes, to our own ecclesial bodies. We suck at demonstrating to anyone outside our inner circle that we know anything useful. This is partly because we are so defensive these days, now that Christendom is crumbling. This professor also thinks, and I agree, that it has a great deal to do with specialization and compartmentalization in education. In order to talk across disciplines a person has to have some understanding of more than one discipline.

It’s been a very long time since anyone trained in theological discourse pulled any weight in the halls of power. Theologians don’t even have a place at the table in their own universities.  A major reason for this shift is the neoliberal takeover of education. Listen to any speech, by anybody, about “education reform” or the objectives of education today. They always say it’s so students can “compete” in the “world market” and maintain some sort of exceptionalism or hegemony for the United States. Universities keep talking in terms of “value propositions” and “return on investment.” Both so-called liberals and conservatives see education, even public education, as a commodity, and students as products, but it’s more blatant in conservative circles. Scott Walker, the Republican governor of Wisconsin, recently tried to change the mission of the University of Wisconsin by adding language about workforce preparation and removing language alluding to the common good and “the search for truth.”

Theology is the human encounter with ultimate concerns. This quest is open to anyone, not just religious people or theists. Theology asks questions like, What is the best way to live? What is a good and just society? What’s wrong with us? How do we know what we know? How can we be better? What matters? How do we make moral judgments? How do we teach our young right from wrong, good from bad? What are the limits of knowledge? How can be we happy? What is excellence? You won’t get any help wrestling with these questions from pundits or politicians or professors these days. But we’re all fascinated and captivated by them, aren’t we? (At least the people who have the luxury of time to think are captivated.)

The wisdom traditions have a great deal to say about all of these things, and about happiness and virtue, about suffering, about evil, about love, about transcendence. Judging from the kind of pop theology that gets repeated publicly these days, not many people are being exposed to these rich traditions.

If you want to practice thinking theologically, especially if you are turned off by easy answers and black-and-white moralizing, you’d be much better off reading fantasy and science fiction, going to plays, or even watching TV than going to church or even taking a college ethics class. Yesterday after watching a YouTube video of Ursula K. Le Guin accepting a lifetime achievement award, I got The Lathe of Heaven on my Kindle and read it. It’s a short book, but it’s packed with brilliant insights into social ethics and human nature, plus it’s a wonderful story.

I’d love to teach an ethics class based on movies and TV shows, especially shows with morally complex (or dubiously moral) main characters–gangsters, outlaws, outcasts, revolutionaries, or spies. That’s where theology and ethics get interesting–in real-life situations, where people are more often forced to choose the lesser of two evils than presented a clearly delineated good/bad dichotomy.  In a class I took on cross-cultural religious ethics at Boston College the curriculum included two novels and a movie, all about clashes of Christianity with indigenous, non-Christian cultures. It was an effective way to engage with ultimate questions contextually and meaningfully.

People think metaphysically all the time. The trouble is, they usually start from thin, fragile, inadequate metaphysics. That is where we find ourselves today, and we keep getting stuck in fruitless and largely pointless arguments among people insisting that they are right and the people who disagree with them are wrong. We’re asking the wrong questions, and we’re drawing the wrong conclusions. We’re measuring the wrong things. We’re beating dead horses. And it’s all because we’re not starting from a sufficiently robust platform. What the Abrahamic religions and Buddhism (among others) can do is provide that robust platform.

Updated 3.28-15 to fiddle with my definition of theology and make a couple of other tweaks. Also, I have no idea how comments came to be closed. I didn’t do it, and I can’t figure out how to change it.

posted by Amy on Mar 11

I was recently hijacked emotionally by people who have power over me and misused it. They criticized and chastised me for failing to do things that they had never told me I was expected to do. It was reminiscent of multiple instances in my childhood, although this time nobody screamed, beat me, or washed my mouth out with soap. But it was enough like those childhood hijackings to induce a state of panic, almost dissociation, in me. I was flooded with fear and shame. All I wanted to do was get away from my accusers. My rational adult brain was not in charge. The abused eight year old who knew an existential threat when she saw one got me out of there as quickly as possible.

There was a time I would have just sucked it up and kept all of that to myself. I would have accepted the other people’s negative judgments of me and their characterization of the chain of events that led them to do what they did. I would have blamed myself for not knowing better how to please them and avoid punishment. Although I didn’t stick up for myself while the event was occurring, I also did not abandon myself. Beginning the next morning, I talked. I told quite a few people what happened. Without exception, they all confirmed that the other people’s behavior was inappropriate and regrettable. Everyone I talked to was shocked about the blatant misuse of power and lack of courtesy or empathy that I experienced. Many offered insights into what might have led to that unprofessional behavior, and most gave me helpful ideas for what to do now. I am very glad to have had support, guidance, kind affirmations and wise counsel from these friends,  colleagues and mentors. Also, I am very glad I did not become immobilized by the fear and shame that arose when it first happened. My ability to speak out (albeit belatedly) is evidence that I am continuing to heal from my emotional wounds.

But from the time it happened over a week ago until this morning I was physically ill. When my “Bodhi & Mind” yoga instructor came over for our scheduled appointment, she listened carefully to my story and proposed that we do some breathing meditation, restorative poses, and an extra-long yoga nidra practice. (Learn more about the program by clicking here.) After helping me get back into my body with sitting, breathing, and a brief body scan, she helped me into a restorative pose and suggested my mantra should be some version of “there is no tiger, ” such as, “it’s OK to relax,” or “I am safe.” When the session was finished I sat up and spoke to her. My voice sounded clear and normal, not raspy and breathless as it had before. I felt more focused, centered and calm. I told her that, and she said, “We just had to reset your system.” I had been stuck in “fight or flight” mode. I wasn’t consciously aware of that, but my body was madly signalling its distress with physical symptoms.

They say it’s not stress per se that damages people’s mental and physical health, but the way we respond to the stress. Although I was not consciously aware that I still felt threatened, I had slipped into an old pattern, and it was operating just below my awareness.

I do not blame the “hijackers” for what happened in my head. I understand that they have their own fears and anxieties, and were obviously not at their best at that time. The incident showed me that I need to keep working to be aware of what I am feeling and what I need. Next time I will be more proactive in honoring my own feelings and needs, and trying to get them met in real time, not simply afterwards.

Humans are hard wired to assess threats quickly and act on them. We make sense of our world by classifying new experiences based on what has happened in the past and what seemed to work to assure our continued survival. Someone who was abused as a child tends to be extremely sensitive to the kinds of unease, anxiety, fear and anger in others that can be precursors to violence, and to react in accordance with the perceived threat. While the “sensors” operate instantaneously without conscious thought, and are extremely accurate, the stories our prefrontal cortex tells about what’s going on are not infallible. Certain triggers can even cause emotional “flooding” that completely overrides rational thought. If something like this happens again I hope I will be more prepared to choose neither fight nor flight, but dialog and further clarification. And I know for a fact that relaxation, mindfulness, and breathing can help me remember that there is no tiger.

 

posted by Amy on Dec 14

Recently a friend asked me why I want a PhD. I fumbled for an answer, and ended up saying several things: Because I love being a graduate student, surrounded by smart, passionate people and swimming happily in an ocean of knowledge. Because I hope to help make the world a better place, both by participating in academia now and, if I live long enough, by what I do next. And, finally, I said it was because the sum total of all the advice my high school guidance counselor gave me was, “With your IQ, you should get a PhD in something.”

I am constantly reevaluating my decision. I transferred to BU in 2010 with the intention of finishing my M.Div. and going on somewhere to get a doctorate in something. I had recently done primary source research for a paper on Methodist church trials. It combined my love of history with my knowledge of the law, and I thought I might do a dissertation on that. But in my first semester at BU I took a class from Elie Wiesel. He meets individually with all his students. When I went to chat with him he asked me what I planned to do, and I told him about my interest in Methodist church trials. He looked bored, and I suddenly realized I wasn’t very passionate about it either. Over the next two years I took four classes in ethics from Norm Faramelli, and I figured out that I am very passionate about ethics.

Near the end of my second semester at BU I was diagnosed with metastatic breast cancer. I didn’t know if I would be able to stay in school. I thought I might die soon. (Median survival after this diagnosis is around 23 months). Most importantly, I thought it might be selfish to go on for a doctorate after I graduated in 2012. Everything was up in the air as the deadline for applying to doctoral programs approached. I was bald from chemo, ten pounds heavier from steroids, and still reeling from the diagnosis and its implications. I thought maybe I should go back to Colorado after graduation and take an appointment as a licensed local pastor. Maybe God was calling me to use my experiences as a cancer patient to minister to others.

I raised this concern when I met with Dr. Farmelli and his teaching assistant. The TA assured me that I would be in ministry as a doctoral student. In my work as a teaching assistant, research assistant, and classmate I would be helping prepare future pastors for their work while supporting the academy and the church. I had thought my desire to continue graduate studies was essentially selfish and self-indulgent. Maybe it is, but she convinced me that in following my own deepest longings I also serve others. I applied to the BU School of Theology, to BU’s (secular) graduate school of religion, and to Iliff School of Theology. The BUSTh application was accepted, and I decided to go ahead with it.

The question is far from finally settled, though. I have a long way to go yet, and I am getting increasingly homesick for my family, my friends, and my hometown (Denver). My health continues to be an issue. Thankfully, I don’t have any cognitive impairment from cancer treatment, but Stage IV cancer is “treatable but not curable.” I still have cancer. I still have to get infusions every three weeks and swallow 6 big pink pills a day every other week. My cancer is “stable” for now. No one can say how much longer that will last. I don’t think about cancer constantly anymore. But I never manage to get very far from it.

Last week I attended a meeting where a BU professor came to talk about getting books and articles published. He said anyone who wants a PhD should go ahead and do it. If nothing else, you get 100,000 words you wrote that will always be there. Looking at me, he said there’s no upper age limit for scholarly work. One of our professors is 75, and he has written 13 books, including a massive three-volume set that he started when he was 70. Writing is a way to make a permanent mark on the world. Whatever I write will still be speaking for me after I’m gone.

He was also enthusiastic about the job prospects for people with PhDs. Yes, good jobs in higher education are scarce, but, according to him, private business loves doctors of philosophy. I have heard doctoral studies likened to an extended hazing. The fact that you put in the time, made the effort, jumped over all the hurdles, and stuck with it sets you apart. And, especially with interdisciplinary work, it makes you uniquely able to address real-world problems. To get a doctorate, you have to learn how to write, think and analyze complex ideas. You learn to stand in front of audiences and speak, teach, persuade, and motivate others. These are eminently marketable skills. He told us about a colleague who quit his professor job and got a job with a consulting firm. He’s still writing and publishing academic work, as a sideline, while making vastly more money than BU pays its professors. Most of the other attendees were young people who had all been strongly discouraged from pursuing doctoral studies. There are very few tenure-track positions in academia, and adjunct professors work for less than minimum wage, with no benefits and no job security. They were thrilled to get some encouragement for a change.

I was encouraged too. One purpose of the meeting was to talk about how to position oneself to apply for tenure-track academic appointments. There are conventions that must be followed. I do not want that life, which means I have a lot more latitude in what I research and what I write about.

Right now I’m still writing papers, reports, and this blog. One way I know I’m an ethicist is everything I write comes around to ethics and the local church. (That statement, “ethics and the local church,” is far from simple. It encompasses theories of knowledge, human nature, God, church, society, law, social change, personality, meaning, value, systems theory, embodiment, practice, virtue, and moral formation.) I wrote a paper on liturgy and sacraments last semester. It was about ethics–the ethics of doing liturgy well, and the role of ritual in forming character. I just wrote a report about my research for a study of clergywomen in leadership, and it also ended up being about ethics and the local church.

I had a scan last Thursday. I’ll get the results tomorrow. I will find out whether the cancer is better, worse, or about the same. Except for the first one, in 2011, all my December scans have shown progression. Whenever I’m waiting for scan results I try to maintain a posture of cautious optimism, tempered with a healthy dose of denial. I have learned to consider “stable” a good result and, as far as I’m concerned, even a scan that shows some progression is “stable” if there are no new lesions.  I feel fine. I can function. The cancer is not yet affecting the way my body and mind work. Someday I will find out that the cancer is advancing and there are no more options for trying to control it, but not yet. Not yet.

 

 

 

posted by Amy on Oct 11

On September 27, 2014 I went to the Living Beyond Breast Cancer annual fall conference in Philadelphia. I got a travel grant which waived the registration fee and will reimburse me for my airfare, and I stayed with friends in town, so it was a free trip. Later I learned that the Susan B. Komen Foundation funds the travel grants. I have concerns about Komen, “Big Pink” breast cancer “awareness,” the politicization and commodification of breast cancer, etc., etc., but it was lovely to get a free trip to the conference, so I’m either a hypocrite or a typical human being, fully capable of holding two conflicting convictions at the same time. Or maybe those are two ways of saying the same thing.

The sessions I attended were informative and worthwhile. I met some great people. I reconnected with a seminary classmate who is now also a member of the club no one wants to join. That was a very nice surprise. There were over 500 people there, so it was busy and big. One of the oncologists who spoke specializes in treating young women who have breast cancer. That seems to be an expanding category, and it’s pretty scary. Living Beyond Breast Cancer seems to be an all-around wonderful organization. Their site is chock-full of helpful information. They do seminars all the time. The conference was being live-streamed, and the videos are still available online. I am glad that LBBC exists, and I am grateful for all that they do. The presenters at the conference were top-notch. I’m glad I went.

But I’m kind of crabby about the whole pink ribbon culture, and I’m impatient with the public image of breast cancer. I didn’t realize how touchy I am until another participant innocently asked me if I’m a survivor. I should have just said yes and let it go–she was just trying to make conversation–but the “survivor” label pisses me off. I don’t like the implication that I’m in a “battle” that can be “won.” Some people don’t even consider me a “real” survivor because I have late-stage breast cancer and will presumably succumb to it at some point. In other words, I’ll “lose.” As if I had any power at all to change that. As if I could just cop a positive attitude, close my eyes, nod three times and make it go away. Bah.

Supposedly, breast cancer is a non-political “cause” that everyone can get behind, and everyone understands. Nothing could be further from the truth. Because of the Komen model of “awareness” and “early detection,” as well as the organization’s very flexible thinking about who might be an appropriate partner, the public face of breast cancer is severely distorted. Big Pink wants money any way it can get it. Komen has gone from being “for the cure” to being “for itself.” This is not specific to Komen. Most organizations experience that kind of mission creep. But the marketing of breast cancer makes me angry. To raise money, Big Pink first exaggerates your risk of getting breast cancer, then plays down your risk of dying from it. A one in eight lifetime risk of getting it does not mean one in eight women (and a few men) will get it. (Go to http://www.breastcancer.org/symptoms/understand_bc/risk/understanding for a complete explanation of the “1 in 8″ figure). And early detection turns out to have virtually no effect on overall survival in developed countries. U.S. statistics are a bit hard to track, because of the way breast cancer is classified, but something like 20% to 30% of all people diagnosed and treated at an earlier stage will eventually get to Stage IV, which is almost 100% fatal, and 5% to 10% are Stage IV at the outset. That means at least one-fourth, and maybe far more, people who get breast cancer will die from it. The death rate has started to edge downwards, but that is from better treatments, not early detection. The only thing early detection does is enlarge the amount of time you know you have cancer. Those are not happy, victorious, triumphant, rite-of-passage facts, so they get buried in the avalanche of “awareness” every October.

It isn’t cancer in the breast that kills you. Breasts are not vital organs. It’s when it spreads to distant organs (including the brain) that it becomes deadly. So real “awareness” is not about saving “hooters” or “ta-tas” or “boobies.” It’s about a deadly killer that takes close to 40,000 lives every year in the U.S. and is the number one cause of cancer death worldwide. Many parts of the world don’t even have Tamoxifen. Scratch that. They don’t even have pain medication for people who are dying of cancer. And here in the U.S., poor women, uninsured women, and African-American women all have far worse outcomes than white women with insurance. Breast cancer highlights all the race and class health injustices and disparities that exist today, but nothing you hear in Pinktober is going to remind you of that. The inconvenient truth is that people die from this disease, and no matter how many pink ribbons you wear or pink-themed walks or sleepovers you take part in, that won’t change without science.

Dr. Clifford A. Hudis, who led a session on treatment of metastatic breast cancer at the conference, made the best point of the day. He said the thing that makes this country great is its scientific achievements, and the funding for the National Cancer Institute has not been increased in ten years. Its annual budget is a pitifully small amount–less than we blow through in a few days of bombing Libya or Syria or Iraq or occupying Afghanistan. Cancer affects almost every one of the 330 million people in the U.S. We should be spending a whole lot more money figuring out how to deal with it. Dr. Hudis also said that the cost of a breast cancer drug does not correlate with efficacy or number of side effects or any other drug-related criterion. The number one predictor of what a cancer treatment costs is the year it was approved. We should be investing significant public funding and brain power into hard research and drug development. Breast cancer is a public health issue. It isn’t a “cause.” Getting people to take walks or buy pink tschotskes is pointless and stupid.

One way to look at a gathering like this is, “We may all be different in terms of age, race, social class, type and stage of disease, and so forth, but we all know what it’s like to have breast cancer, and it’s great to have that bond.” I don’t see it that way. In 2006 I went on a week-long, 450 mile bike ride in Colorado called Ride the Rockies. I had no illusions that all 2,000 of us who signed up for it were all alike–one look around proved that was not the case–but it was cool to spend a week riding a bike and camping out with 2,000 other people who thought that was a fun way to spend a week. We all had our own definitions of fun, but we were all riding bicycles along the same route. The “breast cancer journey” isn’t like that. The vendors in the sponsorship area that we had to pass through at the LBBC conference–like running a gauntlet–proved that. No, I don’t need lymphedema sleeves, though it’s nice to know that those who do need them can get pretty ones. No, I don’t want a pink ribbon refrigerator magnet. (I’m not sure anyone was actually selling those, but there was a general impression of trivialized kitsch about some of the booths.) I don’t need a mastectomy bra. And, really, who needs to know about a private, for-profit cancer treatment business that does none of its own research but does engage in quackery and snake oil? We don’t “all know what it’s like to have breast cancer.” Some of us have great doctors and some don’t. Some of us have responded well to treatment and some haven’t. Most have had surgery, chemo, and radiation, but not all. Some of us are doing well and some are not. Breast cancer isn’t even a single illness. It is at least fifteen different diseases, with different characteristics. But it bears repeating: at least one-fourth of the people who get breast cancer will die from it, and not because they missed a mammogram or didn’t have a good attitude, but because there is no cure for metastatic breast cancer.

This is my fourth October since my breast cancer diagnosis. I used to buy the dominant narrative. Heck, I own a “Race for the Cure Team Captain” baseball cap. Now I see that the pink haze obscures the seamy underbelly of for-profit health care, especially pharmaceutical research, and of unequal access to health care. Genentech makes all three of the drugs I’m on right now, and they are very, very expensive. (Genentech didn’t have a booth at the conference, but they did give me a lovely white journal in the goodie bag, and I appreciate both the gift and the fact that their drugs are keeping me alive). But I’m not a “survivor” or a “warrior” or brave or noble or anything. I’m a person who has a disease that far too many people get and far too many people die from.

The last LBBC conference I attended was also in Philadelphia, in the spring of 2013. It was specifically about metastatic breast cancer, and I saw my friend Denise there. She and I met through an online support group for people with our specific subtype of breast cancer. She died not long after that conference, about a year ago. I felt her absence keenly.

 

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.

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