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 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. Each parent had three siblings. 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.

 

 

 

 

 

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.

posted by Amy on Nov 20

You don’t need to know the details about my home life as I was growing up. It was, shall we say, not optimal. But I turned out pretty well, and that’s largely because of the greatest thing about growing up in the 60s: kids were routinely allowed to run around completely unsupervised and go pretty much anywhere they wanted, including the library. Like tiny homeless people, we could spend the entire day there if we wanted to. We could also hang out in the woods, or down by the river, doing whatever we were moved to do. A more mischief-minded child might have gotten into trouble. But, in addition to riding my bike all around, and spending long, lovely hours communing with trees, rocks, tadpoles and a sweet little stream near my house, I read books. Lots and lots of books.

First I became interested in animal stories. Horses first, of course:  Black Beauty, The Black Stallion series, Misty of Chincoteague and all its spinoffs, and probably some I’ve forgotten. The part in Black Beauty where the hero (horse) nearly died from someone’s ignorance affected me deeply. It made me understand the importance of excellence–of knowing what you’re doing and doing it right. Then it was dog stories. I especially remember one about a cocker spaniel that was a show dog (though not all that well. . . .) Then, when I was in about the fourth grade, it was Little Women, Little Men and Eight Cousins–stories about families. Different from mine. Happy families that actually had conversations and knew one another. Finally, and most formatively, I spent a long time reading biographies of women.

I read every biography of a woman that I could get my hands on: Julia Ward Howe, Florence Nightingale, Marie Curie, Annie Sullivan, Amelia Earhart, Sacajawea, Nellie Bly, the investigative reporter who got herself committed to an insane asylum so she could expose it, Clara Barton, the founder of the Red Cross, and Jane Addams, the founder of Hull House. All of them inspired me. All of them made a difference in my life. I had been told I could be whatever I wanted to be. Those women were models of possibilities for me.

I also read fiction, especially science fiction. I loved A Wrinkle in Time and all the other books by Madeleine L’Engle, as well as the Asimov Robot novels. Later it was Heinlein and Kurt Vonnegut. I got hooked on fantasy too, and formed a lifelong habit of reading books about alternate realities with dragons, Hobbits, elves, people with leprosy, or people who could time travel.

My parents had a set of Bible stories. I read those. My maternal grandparents had an endless supply of Readers Digest Condensed books. I read those when we visited them in Boulder, Colorado every other summer. They also had tons of old National Geographics. I read them too.

Books opened the world to me. They gave me an escape, but they also sparked my imagination. They made me understand that there were other ways to live than the way I had to live, temporarily, in my crazy family. They made me believe that another life, another world, was possible.

Reading saved me. Reading transformed me. Books and stories were the things I treasured most as a child, and they became what I most wanted to share with my own children. From infancy, when they went to bed, they got three stories and three songs. My husband and I took turns. Every night one of us put the kids to bed while the other did the supper dishes. It was a set, unalterable routine.

One of our sons had a minor reading disability. His second grade teacher told me she was sure he’d keep working to overcome it, “Because he realizes that what he wants to know is in the books.” I remember another son, also in second grade at the time, getting out a book and announcing he wanted to know “all about birds.” I was indescribably happy that they also loved books and of learning.

I treasure the memory of some of the children’s books we read over and over. One son, the musical, poetic one, liked to repeat lovely phrases he heard. From a book called Christmas Bear, he especially liked “Sliding down on a ribbon of morning mist.” (He also, from a very early age, liked to sing the Cheers theme song, especially, “Where everybody knows your name.”) No one had read to me when I was a child, so it wasn’t until I became a parent that I discovered Heidi, and the Little House books, but I also read them beloved titles from my childhood, plus many more recent treasures written for children and youth. Our times reading together are among my favorite memories of family time.

At a rally by and for the Philadelphia Student Union in 2010, a Latina public high school English teacher spoke about the “Cradle to Prison Pipeline®” and how she prepares her students to resist it. (http://www.childrensdefense.org/programs-campaigns/cradle-to-prison-pipeline/) She said she teaches them from the “approved canon” of reading materials, but she uses it and other supplemental materials to help them see how they are being manipulated and marginalized. Her mission is to give her students the critical thinking skills and awareness they need to become autonomous actors and not the powerless, commodified objects that they are destined, by their race and social class, to become. Stories and books could save her students too.

If children love to read, and if they are given the run of any decent library, they can become liberated, educated, humanized, and empowered. But if you make them hate reading with stupid, boring or senseless books, you risk condemning them to the stultified, dumbed-down, unimaginative life that people who don’t care one bit about them think is the best they can hope to have.

For more ideas in this vein, see this article (which is satire) on why Neil Gaiman should be the U.S. Secretary of Education. My nice hot link tool isn’t working in WordPress today for some reason, so you’ll have to cut and paste the URL: http://radicalscholarship.wordpress.com/2013/10/17/neil-gaiman-should-be-u-s-secretary-of-education-things-can-be-different/

Want to help save education? How about volunteering at a school to go read to kids? Want some inspiration for how that can work? Watch Princess Bride.

 

posted by Amy on Nov 2

I am a naturally optimistic, cheerful person. I have always had a sunny disposition. I’m also highly skilled at denial. Those traits and that skill have gotten me through plenty of rough spots in my life, but lately I’m coming up empty. I spend too much time reading things I find on the internet, and not enough time on assigned reading. I lurch from one obligation to the next with insufficient preparation or attention. I’ve been faking attention, faking interest, faking enthusiasm. People are starting to notice.

I’m questioning whether this really is how I want to be spending my time. I rarely question commitments I make. I decide and then I carry through, usually without a backward glance. I decided at age 10 that I wanted to be a lawyer, and so I became a lawyer. Four years of college, one year off, then three years of law school, then 28 years of nearly-full time law practice. There were setbacks. I had many reasons to question the decision, many bumps in the road. But I stuck with it all that time.

Then in 2008 I decided to go to seminary in Philadelphia and, while there, decided I’m being called to teach, so I transferred to Boston University School of Theology, where I finished my M.Div. in 2012 and immediately started on a doctorate in social ethics. I did that despite being diagnosed with metastatic breast cancer in May of 2011. The initial decision was made in the context of having excellent health and a robust genetic endowment for longevity. One grandfather lived to be 89; the other made it to 99. One great aunt lived to be 100. I have relatives in their 80s who are still going strong. Obviously, my diagnosis changed things. I thought about it, prayed about it, and consulted wise ones, including pastors, mentors, fellow students and my oncologist. Above all, it was personal. Study and academic work and my BU community fulfill me. I am, at heart, a scholar. I am committed to learning and teaching. I have things to say, and a burning desire to find out more, and a mission to pass on what I know.

But I don’t really feel at home in Boston. Frankly, for those of us living in cancerland, it’s tough to feel at home anywhere, but every day I am reminded that I’m a stranger here. I still don’t have a good mental map of this place. I don’t know how far apart things are, or whether it’s better to walk or take the T. Most of the new friends my age that I’ve made are in my support group and they, like me, are living on borrowed time. Four women that I had grown quite fond of, and enjoyed seeing once a week in group, have died recently. That takes a huge toll.

The real issue is that I don’t know how much time I have. If it’s ten more years, giving me time to finish the doctorate, do some other writing, finish being ordained, start or add to a ministry, then I want to stick with it. It’s great being a student, with the nice breaks between semesters and all the intellectual stimulation of being in an academic community. That’s good for me, and it spurs me on to leave an intellectual legacy of some kind.

If it’s two more years, that’s a different equation. Now, while I still have plenty of energy and feel good most of the time, I should be doing things like organizing photos and videos, discarding unwanted documents and papers, spending time with my kids, traveling, and writing. But would I? Or would I just fritter away the time?

I was talking to a family member on the phone last night, and I realized that I don’t have to decide anything right now, and probably shouldn’t. The days are getting colder, darker, and shorter. I’m feeling stressed, depressed, and anxious, and it’s an especially tough semester. But there’s reason to hope for a turnaround. One of my classes is only meeting one more time. That will free up 7 or 8 hours a week to devote to other work. I’m going to see family in Harrisburg soon, and I’ll be back in Denver for Thanksgiving. Those trips will fortify me and cheer me up. I’ve been on Kadcyla for six months, and although it hasn’t brought about a remission, it does seem to be keeping me stable, with tolerable side effects. For now I can stay the course, count my blessings, practice good self care, do the best I can, and let myself be imperfect and human. Maybe, after all, that’s a good legacy too.

 

 

 

posted by Amy on Oct 29

It was holiday season–Thanksgiving or Christmas. In the checkout line at Whole Foods my eye fell on a magazine called “Spirituality and Health.” I bought it. Inside was an article about groups that knit “prayer shawls” and give them to people who are experiencing hardships. I liked what it said about how the sound of the needles clicking could be meditative. Soon I bought the yarn and needles that I’d need to make one.

I cooked up a plan to make one for my children’s grandmother (my former mother-in-law.) I’d have each of my five kids knit part of it. Luckily, everyone was home for Christmas. And, because they love her, everyone did at least a few stitches after some quick knitting lessons.

Then came the news that a friend from church, Kathy Burrows, had been diagnosed with metastatic breast cancer a few years after her initial diagnosis and treatment. I was almost done with the shawl, and I decided to give it to her. She knew my kids, and I thought she’d like knowing they had all helped make the shawl. One of my daughters helped me pick out new yarn, and I got to work on a second prayer shawl. Mom appreciated the story about how I gave the first one to Kathy.

The pattern for the shawls is simple: Knit 3, Purl 3. It’s easy to recite psalms or prayers while knitting. I pray or sing hymns while I knit. Anyway, sometimes I do. To be honest, most of the time I let the knitting be the prayer practice by itself. The finished shawl is large–finger tip to finger tip, and about 30 inches wide. The ends are fringed.

I’ve made a lot of shawls. I gave one to my sister, and she promptly lost it. I haven’t gotten around to making her another one. I made a purple one for a long-time friend. I made one during the weeks that, via email, I shared another friend’s experience of his mother’s slow death from cancer. It was finished before she died. I gave it to him the next time I saw him. For that one, I did do a lot of intentional praying. I made one for my brother when I found out he had metastatic lymphoma. Fortunately, that got to him before he died. Oh, and I did make one for myself. I keep it draped over a living room chair.

I made one for a friend whose husband of many years simply decided he no longer wanted to be married anymore. No discussion, no negotiation, just out of there. She told me more than once that she cherished it, even sleeping with it wrapped around her.

The article had a prayer to go with the shawl. Over time I’ve modified it to be nonsectarian but (I hope) still comforting. I print it out and include it with shawls I mail out.

Last February a friend told me about “pocket prayer shawls,” and I made a bunch of them from thin yarn remnants. They’re about 2 inches by 3 inches. You can form a cross shape with alternating blocks of stockinette stitch. I also made some with seed stitch, and a few with the knit 3, purl 3 pattern of the full-sized prayer shawls.

A week ago yesterday, Marilyn came to our support group. She had started on a last-ditch treatment, hoping it would buy her more time. It was such a blessing to see her. Our hour together in the group was amazing; unlike anything else I’ve ever experienced. We were simultaneously crying and laughing, grieving and rejoicing. Marilyn said she’d be back. I gave her a pocket prayer shawl. It was purple, made out of “silk bamboo” yarn, in seed stitch. She tucked it away into her purse. We posed for pictures. She looked thin and frail, but her beautiful smile lit up her face. It was holy.

Friday we learned that Marilyn had died early that morning. Her funeral was Sunday. Four of us from the group sat together near the front. Another member sat farther back with her husband. Hester couldn’t be there, because she was out of town, but yesterday we filled her in on all the details.

It’s still fresh–the grief and sadness over losing Marilyn, as well as the realization that I am on the same path (though I have no idea how long it will be before my time comes.) Since Sunday I’ve been trying to catch up on school work, but mostly all I want to do is knit.

posted by Amy on Oct 12

It’s National Breast Cancer Awareness month. I don’t always blog about cancer, and I usually try not to mention it at all in October because (a) other people are doing a fine job of talking about breast cancer, and especially about “Pinktober” (for example: herehere, here, herehere, and here) and (b) I think everyone is already “aware” of breast cancer, and I don’t want to enable the commercialization of a public health issue and the commodification of women. I put “aware” in quotes because what people think they know about breast cancer is usually wrong. Here is a concise summary of true things about breast cancer that you wouldn’t know if all you did was take in what “Big Pink” tells you. There’s more, but that’s a good start.

But it’s getting personal. I belong to a support group for women with metastatic cancer that meets every Monday at Beth Israel Deaconess Hospital in Boston. Our group leader, Hester Hill Schnipper, is a treasure. She’s been doing this for over 20 years, and she’s known a lot of women who died. Her skill in leading the group, her perspectives on the emotional and social aspects of living with metastatic cancer, and the relationships we form in the group, make it much easier to live in cancerland.

Stage 4 support groups are rare. Also, not very many of the women who could be part of the group choose to do so. The ones who do show up regularly seem to share a feisty/realistic attitude toward their disease. We know we’re not very likely to escape the gravitational pull of cancer; that sooner or later we will run out of options, stop treatment, and face death. But in the meantime we have things to do, people to love (including each other), information to share, gifts to give, and thoughts to express. In addition to that group, I belong to an online support group for people with my particular subtype of breast cancer. That group has members at all stages, but whereas many people diagnosed and treated at a lower stage can (and should) think in terms of getting back to normal, a stage 4 diagnosis imposes a weird, dreamlike “new normal.” They are the ones with whom I have the most in common.

It’s one thing to say, “I understand my chances of living long enough to die of something else are not good,” and quite another to have the true meaning of “end stage” continually slap you in the face. People I care about have been dying lately. It hurts. It’s hard. I miss them. I ache for their families. And I really don’t like having my defenses breached time and time again. Most of the time I really can live joyfully or at least busily in the moment, and not think too much about how this is going to turn out for me and the ones who will be left behind when I die. But watching cancer keep claiming lives of people who matter to me makes that impossible.

I don’t know what else to do except talk a bit about two of the unique, irreplaceable, funny, good, kind, smart, feisty women who have come into my life for no other reason than our common medical condition and who are now past the “treatment” phase.

First there’s Marilyn, who has been a fixture in my in-person group as long as I’ve been a member. She brings a breath of fresh air and sparks of energy with her every time she walks into a room. She was getting tired, from both the cancer and treatment, so she got a prescription for stimulants, and she called them “supplements.” That always made me laugh. She knew full well it was speed, not vitamins. She wore outlandish but always stylish outfits–cowgirl boots, mini skirts, a magenta wig, hats, jackets. I never knew her before she had cancer, but I think it was a not-so-subtle message: “Look at me. I’m here. I’m alive. I’m not dead yet.” Some people don’t know what to say to someone with a terminal illness, or don’t want to deal with that reality, so they fade away, or they act like you’re not there. It’s impossible to do that with Marilyn.

But she’s dying now. She went through the drill for 10 years after her cancer metastasized, but finally nothing worked anymore and she had to stop treatment. She was in the ICU for four or five days, but went home Wednesday. Hester sent us an email saying she saw Marilyn and her husband, and that Marilyn looked and sounded like her normal self, including her sense of humor. I would like to have seen that. Hester gave us Marilyn’s address and invited us to write to her. Yesterday I spent three hours coloring a mandala for her, and I mailed it with a letter saying a bit about what she means to me, and obliquely saying goodbye.

This morning I logged on to my online support group and learned that “Mandamoo” had died. Oh, man. That’s really hard. She had three little kids. Her cancer progressed from stage 3 to stage 4 while she was being treated for stage 3. Nothing ever worked very well, or very long, for her. She lived in Australia. She was thoughtful, kind, supportive, and smart. She was diagnosed at about the same time I was. She stopped treatment in late September, and she’s already gone. She was 41. Her last post was in response to a member who staunchly insists that we “make our own reality.” Here’s what she said, on September 25:

Andi

So many of those words in your prayer have been said by me over the past 2-3 years. I have always known I would get better.

Today the doctors told me there is nothing more that can be done by them apart from making me comfortable. The chemo which I have been determined would work (number 9) hasn’t helped as the disease has continued to take over my lungs now resulting in quite severe symptoms.

I have not caused this to happen. I have pursued TCM and acupuncture, changed my diet, upped my exercise even to swimming ocean races. I have worked with a spiritual healer and metaphysical counselor, I meditate regularly.. I have lived and loved fully, always believing I would be a miracle survivor.

 I do believe thoughts have an impact and I have had a wonderful 41 years but it is not enough. I will not give up my knowing unless I can know no more.

I haven’t been on the forum recently, and I missed seeing that. I wish I could have said goodbye to her.

There are so many others, but this is getting long. I’ll name the ones in my in-person group who are no longer with us in body: Lynn, Mary, Joyce, and Pam. And some of the online friends who have died: Chris, Jessica, Pam, Brenda, Amanda.

Goodbye, friends. I’m glad we met, though not glad about the circumstances, and so sorry your voices have been stilled. I’ll speak for you as long as I can.

 

 

posted by Amy on Sep 15

In May I attended a workshop on chanting meditation at Glenstal Abbey in southwestern Ireland. After that I stayed at the Abbey for a few more days, attending the chapel services where the monks prayed the hours, wandering the beautiful grounds, and enjoying the company of the other guests and of the Guestmaster, Father Christopher. I enjoyed the workshop while it was going on. It was held in a circular room above a library. About six women, one man, and the facilitator participated. I especially liked the other participants. The theme of the workshop was “gratitude.” The facilitator has a masters degree in sacred chant, and she led us in a number of chants, including one we did while walking around the “Ladies’ Garden” near the library.

In a discussion about what we’re grateful for, one woman said we should be grateful for dark things. The seminar leader seemed uncomfortable with that idea. She said something about creating our own reality and not dwelling on what we don’t want in our lives. I think she missed the point. Dark things have their place in life. They bring gifts of their own. If we didn’t ever die or suffer we wouldn’t have any basis for knowing when we are blissful. If we never died we’d be selfish, lazy, self-centered jerks. There’d be no need for babies, and babies are the best thing in the whole wide world. So, despite the leader’s misgivings, I made a list of dark things for which I am grateful: cancer, death, abandonment, loss, fear, loneliness, making mistakes, and crying, and I prayed a prayer of gratitude for those dark things. As the great Sufi poet Hafiz said,

“My Eyes So Soft”

Don’t surrender your loneliness so quickly.

Let it cut more deep.

Let it ferment and season you

As few human or even divine ingredients can.

Something missing in my heart tonight

Has made my eyes so soft,

My voice so tender,

My need of God

Absolutely

Clear.

The seminar leader is not religious, but simply cherry picks the things she likes from every religion. I didn’t get the impression she actually knows much about any religion. In the seminar she didn’t talk about what chanting does. How does it differ from silent meditation? Is it different in a group? What happens to the body and brain when people chant? She says we “make our own reality.” Apparently, she prefers her reality to have no dark side.

But one of the handouts she gave us said, “Every breath, moment, action, every thought is sacred.” I had a strongly negative reaction to that statement, because it’s utterly, dangerously false. Raping someone isn’t sacred. Thinking, “I deserve this more than the person it belongs to” and stealing isn’t sacred. If everything is sacred then nothing is.

All the great religions that she samples and reappropriates have ethics and morals, and they all deal with evil. All have some notion of a path to virtue. Glorifying and deifying oneself is dangerously narcissistic. Pursuit of personal desire divorced from awareness of and respect for the existence, truth claims, and rights of the rest of creation is sociopathic. I do not, in fact, make my own reality. My identity and my reality are socially constructed. We humans are social, political, interconnected, moral beings. The seminar leader’s self-centeredness and narcissism were on display in other subtle ways throughout my stay there. She made me uneasy.

By contrast, I loved the monks and their chanting. They are not self-absorbed navel-gazers. They are doing what they do in reference to, and reverence for, the Master of the Universe. Like clockwork, their day is a cycle of prayer, work, and study. They are loving and serving God and one another. They form and nurture habits that become virtues: faith, hope, love, humility, gratitude, hospitality, self-discipline, compassion. It is outward-focused, not selfish or egocentric. (Which is not to say that people never use religious practices for selfish reasons, or to bolster their own addictions–they certainly do.) But I think I can sense the difference. There is a genuineness to authentic religion that is absent from mere formalism.

 

posted by Amy on Sep 8

On August 21, Robin Olson, the director of the spiritual life office at BU School of Theology, sent me this link to a news story about a woman she knows. I saw Robin yesterday, and she said the story has gone viral, with extensive news coverage and with numerous interviews. Robin and I talked briefly about the issues that raises, and then we both had to go.

There’s a fine line between “brightsiding,” that beautiful word that Barbara Eherenreich coined for the enforced cheerfulness and positivity that our culture demands of everyone, especially people facing grim medical diagnoses, and deciding to go ahead and dance with cancer. It might be impossible to tell one from the other from the outside, but there is an important distinction. Maybe someone with an inside view can explain it.

I wrote an earlier post about the cruelty of positive thinking that might have made it sound like I was targeting “New Age” or “New Thought” thinking styles, but the cruelty and bad theology are much broader than that, as I explained in “Bad cancer theology.”

People want to believe they can control their fate. This is especially true in present day culture, where public health problems are being addressed with fundraisers, “awareness raisers” and marketing campaigns, and where the focus is almost exclusively on lifestyle and other individual prevention strategies. Corporate sponsors like positive, uplifting messages. Donors want to believe that they are making a positive difference. And people with cancer will try anything to get well, including magical thinking. If I just want something badly enough and if I program my thinking to realize the preferred outcome, I’ll get it.

People also hate to think about sickness, suffering and death. Death is invisible in our culture. Cause marketing has helped remove the stigma from breast cancer, but it has replaced it with the stigma of not getting well. Some 39,000 people die of breast cancer every year in this country, so there’s an obvious disconnect between all the shiny happy pink images and the reality. Even the “survivor tents” at Race for the Cure hide from the truth about breast cancer: that you can do everything right, and still have a recurrence or be metastatic at diagnosis. That you are 98% sure to die from it sooner or later if you do get to Stage IV. And that something like 30% of those diagnosed and treated at an earlier stage wind up at Stage IV.

When I was first diagnosed a good friend who had also had breast cancer suggested that a “battle” metaphor for dealing with the disease might not be appropriate. I agree with her. Cancer is not a foreign invader. It is my own cells gone astray. They’ve outwitted the mechanisms that usually keep cells from growing out of control, but they meant well. Cancer is disordered healing. I think hating my cancer could all too easily become self-hatred and self-blame. I’d rather find a way to live with all the less-than-optimal parts of myself than kill them off. Cancer is like the physical manifestation of a character defect: excessive zeal, excessive perfectionism, excessive self-reliance, impatience, laziness, or hubris. I can’t escape my character defects, but I can learn from them. I am who I am because of how my particular body and mind have interacted with my environment through time. Cancer is not the only maladaptive thing about me. Maybe finding a constructive approach to one issue will generalize to the others.

Making friends with cancer is not the same as brightsiding. In my case, anyway, it is a decision not to let the cancer kill my spirit before it finishes off my body. I don’t want it to rob today of any of its joy, wonder, or beauty. I don’t want to focus on one scary, negative thing and lose sight of all my blessings. I don’t want it to define me. I don’t want it to change me for the worse.

No amount of worry or anger will change my future. All it can do is poison my present. I choose not to let that happen. “Positive thinking,” in the way I use it, is deliberate self-deception. It’s grasping at straws. I am not the least bit delusional about my medical status or my prognosis. I don’t believe that a “good attitude” can save me from dying of cancer. I’m 100% sure there’s nothing I can do to avoid dying of something. But I’m not dead yet, and I plan to use the time I have left extracting as much joy and delight from this beautiful world as I can.

 

 

posted by Amy on Sep 7

My sister-in-law posted on the Legacy.com memorial site for her deceased husband, my brother Ross, on the occasion of the 31st anniversary of their wedding. I don’t mind her doing that, of course. It’s one of the reasons I paid for a funeral notice and then kicked in a little extra to keep the site live for a year. Since Ross didn’t interact with me very much over the last 30 years, it might also be a means for me and other family members to learn more about his adult life. But it’s not working out that way.

Almost everything she has posted has a boring, repetitive sameness to it. Here’s what I mean:

From April 30:

My Wonderful loving husband I miss you so much I miss our talks our holding hands and all the excitement you brought into my life you are my love my world my soul mate it’s you and only you until we are together again you will always be in my heart and soul. You are an amazing person you are so missed by me and your family. I know you are in God’s arms. Always and Forever

From May 1:

Oh! My beloved soul mate Ross,

I thank God for I had you in my life. I thank god for the soulful and divine moments I was able to share with you. The most romantic moments are when I was in your arms and I forget the whole world. The most sensual moments are when I was able to cuddle with you and feel you breathing next to me. The most beautiful moments are when I saw you smiling all because of me. The most special moments are when I was able to cheer you up and make you feel proud of me. The most unforgettable moments are when I was able to fight the whole world for you. The most fabulous moments are when I simply was able to be a part of your life.

On May 26:

Now that you are gone and I am having to carry on my memories alone will have to see me through. Memories of all the days we spent together how blessed I will always feel that I was so lucky to be your wife for 30 years. Sept 4,1982 what a wonderful day that was and so many days that were great after that.NO ONE will ever measure up to you why God took you at such a young age who knows I guess God needed you. It’s been quite an adjustment living without you I am hurting so bad I say good morning to you every morning and good-nite every night to you. I will always think about our days together I know we will meet again you are my sweetheart, my true love, my soul mate I will love you deeply for all eternity.

On September 4:

I feel you all around me at church at home at work I am always feeling your love. So many people tell me how lucky we were to have each other and that some people never have or never will have the love that we shared for each other. We were always joined at the hip always together hardly ever did we do our own thing separately, we enjoyed each other that much even after all the years we were together always joined at the hip even you use to say it. I never pictured every minute without you in it you went so fast. I’m so lucky to have loved so much and be loved so much by you. So many memories I wish we could do it all again now I’m on my own I just take it day by day no one said it would be easy I need to learn to be strong again I need to find where I belong there is such a pain in my heart that will never go away until we are reunited again.

In only one post did she describe a specific event, their first date. But that one post shows she knows how to do it. And it does not surprise me that she doesn’t talk about him as a person, or about their life together. She never did that while he was alive, nor did she make more than cursory attempts to interact with me. She sent a few school pictures of my niece and nephew. She sent Christmas cards most years, but there was never any note or family letter. She posted quite a few pictures on the Legacy.com site. She never sent me any of those.

I actually have more memories of her life with Ross than she’s been sharing on the legacy site. There was the time my second husband, my son Ben, and I went to Santa Rosa for her daughter’s wedding. They did all the catering themselves, and they were busy, busy preparing food for the reception the next day. But nevertheless Ross found time to cook a perfect whole chicken (he butterflied it so it would cook evenly) and corn on the grill. Ben had a great time getting to know his cousins. There was the time they came to visit us in Denver for Thanksgiving, which is also my youngest son’s birthday. Ross gave his youngest nephew a Walkman, which was a hot new thing that year. There was the time I picked my oldest son up from college in LA, and we decided to drive the 900+ miles to Santa Rosa to visit Ross and Eve.

In those times, and in our few interactions on Facebook, I learned that Ross had thought through a lot of public and private issues. He read a lot, and he was extremely intelligent and sensitive. In one of our last email conversations, I sent Ross the famous Brene Brown TEDx talk about vulnerability, and he thanked me and said he realized that vulnerability was an issue for him.

Ross’s personality doesn’t come through in what Eve writes. Neither does hers, except for how telling it is that it is all about her: her emotions, her gratification, her sadness. Of course a widow would be sad, but who, exactly, is it that she misses? What was he to her? What does she mean by “soul mate?” On her wedding anniversary, you’d think she’d have some memories: What the cake tasted like, what they danced to for their first dance, what music they had, and who was there. What was it like to blend their families? How did he help? What was his greatest virtue as a man? What drove her crazy? What joys and sorrows did they share? What, exactly, did they do together, besides hold hands and gaze into each other’s eyes?

My take on it is this: She isn’t doing this to memorialize him; she’s doing it to claim him for herself. In the Sept. 4 post she says she was there when Jesus came to take him away. (The first time I had any indication she likes Jesus is when she put a cheesy “Euro-Jesus petting a lamb” picture in the photo album on the legacy.com site.) Ross chose to conform to her demands of him, including the demand that he beat his kids. He chose her over them, and over his aunts, uncles, cousins, and siblings. Ross and Eve were separated several times, but he always went back. He spent his entire adult life trying to win the love of a harsh, punitive, narcissistic woman who, not surprisingly, looked quite a bit like our mother. Over time his idealization of Mom increased, as did his demonization of Dad. Instead of integrating the good and bad sides of his parents, and himself, he did more and more splitting. I knew the truth, and I was not only willing but eager to talk about it. That’s why he avoided me.

In their 30+ years together Ross tried to differentiate from Eve. He tried to make a real career for himself, as a photographer or a chef. He tried to be a real person. But she always overpowered him. Finally, the only way he could get away from her was to die.

She is not a loving person. I’m sure her inability to love extends to herself as well, and I do feel sorry for her. But they were not soul mates. They had a very strong trauma bond, but that isn’t love. He was not her knight in shining armor, he was her serf, and she despised him for his weakness. He was not her beloved true companion. He was her source of narcissistic supply, and her supply got cut off.

On May 11, Eve sent me this message on Facebook:

Hello Amy

I just wanted to say thank you for the thoughtfulness of the card and the book I received today. It might take a few months to get the things to you but I will. My life is really hard right now and I am trying to figure things out. Your brother and I had a great life together over thirty years everyone said we were joined at the hip even Ross said that. I can not tell you how empty I feel and how lost. I am also sorry for your loss in losing a brother everything happened so fast. God says don’t judge me because you do not know what path God has put me on. I just want you to know that I am sorry I didn’t call you or anyone when all this happened. I have been a mess I have lost my best friend, my soul mate I hope you can understand he was my whole world. Thank you again for your kindness.

There it is–the same stereotyped language. Notice there’s no mention of her mendacity–actively concealing the fact of his death from his son, daughter, and siblings, just “God says don’t judge me.” She didn’t publish a funeral notice. She had a memorial service three days after he died. A week after he died Eve’s son posted something on Ross’s Facebook page saying he’d call him Monday as always. She says she’s “sorry” she didn’t call, but she shows no awareness of how messed up it is to do that to other people–including his son and daughter–who loved him too. Even in death, she kept trying to claim him for herself. I asked her whether she somehow felt judged, or whether she thought maybe I didn’t have a grasp of the Christian doctrine of forgiveness. She didn’t reply.

 

posted by Amy on Sep 2

The Music Man opens with salesmen on a train saying, “You gotta know the territory.” They aren’t talking about knowing where the train tracks run or knowing the names of the towns. They’re talking about the people in the towns, and what’s going on with them.

When Henry Hill shows up in River City he asks what’s new. When he finds out that the billiard parlor has just installed a pool table, he tells a story about the trouble that will ensue as their young men fall prey to the evils of pool, first letting them vividly imagine their own sons’ moral decline, and then offering a solution. This calamity can be averted if they start a marching band and get music lessons for the kids. First came the narrative of impending disaster, then he told about how other people had avoided the same fate by accepting his offer. First he hooked their attention and created heightened awareness. Then he made an offer that fit into their own context.

Good sales people know that selling is not a matter of explaining features and benefits, and then bluntly asking if the prospect wants to buy. They build relationships first. They make themselves useful. They learn about their customers’ concerns and then they tell stories that hook the attention of the customer and demonstrate how what the salesperson is offering can meet a concern. It isn’t persuasion or “overcoming resistance.” It’s getting into step together.

Sales people also know not to waste time with prospects whose life situation doesn’t line up at all with what the salesperson is offering. The process of “qualifying” a lead is a kind of judgment, to be sure, but there’s no need to take it personally if there just is not a fit between salesperson and customer.

Selling is not linear. It is not a matter of cold calculation: “I have something you need, so you should buy it from me.” It is relational. It’s like dancing. I’ve taken a few swing dance lessons, from several instructors. My favorite instructor made a point of saying it was a matter of the leader and follower being connected with touch and eye contact, and that it’s up to the leader to establish that connection. The follower has to trust the leader, and for that to happen the leader has to demonstrate trustworthiness and respect. He has to be relaxed, attentive, and skillful. He has to show that he knows what he’s doing.

A first date is a sales call. But you aren’t there to describe features and benefits. You are there to see if there’s alignment between you and the “prospect.” She is there for the same reason. You are being evaluated on everything you do and say. Your goal is to make a connection, to tell stories into which the other person can imagine entering. How you present yourself and how you behave are inescapable elements of the story. I’m there to find out how you are dancing through life, and if you have the skills to do that well.

Like it or not, you are being evaluated and judged all the time. Everywhere you go, whatever you do, people see you and are aware of you. Are you smiling or scowling? Are you neatly dressed or sloppy? Are you punctual or chronically late? When you talk, your stories demonstrate your orientation toward life. Do you live out of love or fear? Are you forgiving or vindictive? Do you have a sense of agency and personal power, or have you given up your power to something or someone else?

I can tell a lot about a man on our first date. I learn more from how he presents himself and how he acts than what he says, but that, too, is important. His worldview, orientation to life, attitude towards women, and personal ethics are on display in what he says and does. Anything that comes up in the first few conversations, no matter how fleeting or seemingly trivial, is usually quite telling.

We all have frailties and shortcomings. Things over which we have no control happen all the time; however, we make choices about how to respond. I can tell a lot about you by how you are currently dealing with important human domains and with breakdowns in any of those areas: health, fitness, career, aesthetics, community, family, spirituality, and personal development. I can tell on a first date, from what you say and how you act, whether you have learned from your mistakes and take responsibility for the consequences of your choices. For my part, I try to be forthcoming enough in the first few dates to let a prospective partner see where I am in those domains. How he responds to those revelations is another important source of information.

On a first date I want to find out how real the man is. Can I get a sense of his true self, or is he closed down, scripted, and artificial? Does he make eye contact appropriately? Does he smile genuinely? Does he have self respect and respect for others? Is he polite but not smarmy or obsequious? Is he sincere? Is he trustworthy? Is he honest?

A real man or woman is self-aware. A real person has a sense of how the past influences the present and future, and takes responsibility for how personal choices contributed to any past or present breakdowns. A real person continually revises her life story in response to new experiences and relationships. She can see patterns and can modify practices based on that awareness. By contrast, phony people can’t do that. They have not reflected on meaning or sought any kind of transcendence in their lives. They sell themselves short, and they also do that to others. They and everyone else are objects, not subjects. Relationships are “I/It,” not “I/Thou.” Their stories are two-dimensional and scripted.

Your character comes through in everything you do and say. You continually signal what you really love and how you really see yourself, whether or not you think you are doing that. Your eyes give you away.

Love is not a transaction or an exchange. It’s more like a dance. In putting myself forward as a potential partner to someone I just met, I am not offering “features and benefits.” I am offering a possibility of dancing through life with me. On a first date, I am evaluating whether you know how to do that and whether you want that too.

 

 

 

 

 

 

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