At the end of 2001, Barbara Ehrenreich, noted feminist author, published a long article in Harper's Magazine. It was sharply critical of the 'breast cancer movement', suggesting that effort was placed into mammography and pink ribbons that could be better used elsewhere.
Ehrenreich was diagnosed with breast cancer and undergoing conventional therapy even while suggesting that she did not believe it was very effective.
HERE IS THE TALK Barbara Ehrenreich gave at Breast Cancer Action in San Francisco, CA:
Actually cancer was not my first run-in with a breast-related disease. About 20 years ago, the American Society of Plastic and Reconstructive Surgeons announced that small-breastedness is itself a disease: "There is a substantial and enlarging body of medical information and opinion to the effect that these deformities [small breasts] are really a disease." They even gave this disease a name—micromastia.
I was myself a sufferer from micromastia. It wasn’t easy. Oh, I managed to hobble around, raise my kids and get my work done, but I knew how ill I really was.
Then just 3 years ago, a doctor told me that I didn’t have to worry about breast cancer too much, because my breasts were small.
Now there’s a doctor who doesn’t have to worry about brain cancer too much…
Here’s another relevant personal fact: In the 70s I was an activist in what we then called the women’s health movement. We campaigned for safe contraceptives, against unnecessary surgery, for the option of unmedicated childbirth, for the right to choose abortion.
In the area of breast cancer, we battled against the practice of proceeding directly from biopsy to mastectomy, without even letting the patient wake up to make the decision herself. We wanted women to have the information and the right to make their own health care decision. We even took on the psychiatrists, with their peculiar theory that ambitious or outspoken women were suffering from “penis envy.”
Anybody here ever envied a penis? Wanted to be one?
Anyway, when I was diagnosed with breast cancer 2 years ago, I did what any veteran of the Women’s Health Movement would do: I started researching, looking especially for support and information from other women who had the disease. I ordered a half dozen book, mostly women’s accounts of their breast cancer experiences. I waded out into the net and found scores of breast cancer websites, which I nervously devoured. I was looking for tips, ways to survive the treatments, questions to ask the doctors, and of course emotional support—sisterhood. I was sure that I would find the Women’s Health Movement alive and well and able to help me.
I found a lot. But what I found shocked me. Yes, I found useful tips and information, but I found something else—that a whole culture (I don’t know what else to call it) has grown up around breast cancer. And it certainly did not contain the sisterhood I was searching for.
How to define breast cancer culture?
It’s very pink and femme and frilly – all about pink ribbons, pink rhinestone pins, pink t-shirts and of course a lot about cosmetics. The American Cancer Society offers a program called “Look Good…Feel Better” which gives out free cosmetics to women undergoing breast cancer treatment. The Libby Ross Foundation gives breast cancer patients a free tote bag containing Estee Lauder body crème, a pink satin pillowcase, a set of Japanese cosmetics, and 2 rhinestone bracelets. And no one, so far as I could determine, was complaining about the strange idea that you can fight a potentially fatal disease with eyeliner and blush.
I found that the culture of breast cancer is highly commercialized. First, in the sense that many apparently grassroots fundraising efforts are in fact sponsored by large corporations eager to court middle-aged females. Among them: Revlon, Avon, Ford, Tiffany, Pier 1, Estee Lauder, Ralph Lauren, Lee Denim, Saks Fifth Avenue, JC Penney, Boston Market, Wilson athletic gear. Where were they, I wondered, when the Women’s Health Movement was fighting for abortion rights and against involuntary sterilization?
More amazing to me though, was the number of breast cancer-related items you can buy today: You can dress entirely in a breast cancer-theme: pink-beribboned sweatshirts, denim shirts, pajamas, lingerie, aprons, loungewear, shoelaces and socks; accessorize with pink rhinestone broaches, angel pins, scarves, caps, earrings and bracelets.
You can decorate your home with breast cancer candles, coffee mugs, pendants, stained glass pink ribbon candle holders, wind chimes and nightlights. You can pay your bills with special “Breastchecks” or a separate line of “Checks for a Cure.”
To me, the most disturbing product, though, was the breast cancer teddy bears. I have identified four distinct lines, or species, of these creatures, including “Carol,” the Remembrance Bear; “Hope,” the Breast Cancer Research Bear; the “Susan Bear,” named for Nancy Brinker’s deceased sister Susan; and the new Nick and Nora Wish Upon a Star Bear, available, along with the Susan Bear, at the Komen Foundation website’s “marketplace.”
Now I don’t own a teddy bear—haven’t had much use for one in 50 years. Why would anyone assume that, faced with the most serious medical challenge of my life, I would need one now? And that wasn’t all: The Libby Ross tote bag that I just mentioned also contained a package of crayons—something else I haven’t needed in many a decade. I began to get the feeling that this breast cancer culture is not only about being pretty and femme—it’s also about regressing back to being a little girl—a very good little girl in fact.
There is, I would point out, nothing similar for me. At least men who are diagnosed with prostate cancer are not given gifts of matchbox cars.
But the worst of it, for me, was the perkiness and relentless cheerfulness of the breast cancer culture. The “Breast Friends” site, for example, features a series of inspirational quotes: “Don’t Cry over Anything that Can’t Cry Over You,” “I Can’t Stop the Birds of Sorrow from Circling my Head, But I Can Stop Them from Building a Nest in My Hair,” and much more of that ilk.
You don’t find a lot of complaining in breast cancer culture. Sure, people acknowledge that breast cancer is a terrible experience in many ways—you’ll lose a breast or 2, you’ll go through chemo and lose your hair and your immune response, you might get lymphedema and lose the use of your arms.
But guess what? You would turn out a better person for it—more feminine, more spiritual, more evolved. You would be something better than a mere cancer-free person; you would be a “survivor.” Some quotes:
As “Mary” reports, on the “Bosom Buds” message board:
I really believe I am a much more sensitive and thoughtful person now… I enjoy life so much more now and am much happier now.
Cindy Cherry, quoted in the Washington Post, goes further:
If I had to do it over, would I want breast cancer? Absolutely.
And I’ve heard even worse on the health channel: gushing descriptions of breast cancer as a form of spiritual upward mobility. Something that a woman should be happy to experience.
Is there any other disease that has been so warmly embraced by its victims? (And yes, I use the word “victim”—that’s another part of the perkiness—the failure to acknowledge that some of us are in fact victims of a hideous disease.) No one thinks TB, AIDS, or heart disease is supposed to be a “growth opportunity” and make you into a better person. No one is thankful for colon cancer, diabetes or gonorrhea. Why, I began to wonder, is a disease that primarily attacks women supposed to be something they should be grateful for?
So when I went looking for the Women’s Health Movement to sustain me in my breast cancer ordeal I found something very different. In the 70s we used to get angry and militant about women’s health issues: we barged into medical meetings, picketed hospitals, showed up uninvited at Congressional hearings. In the case of breast cancer, all that fighting spirit had been transformed into…pink cotton candy.
As for my own mood a year ago, when I was undergoing treatment. It wasn’t sweet or spiritual or “feminine” in the old fashioned sense. I was angry, as angry as I have ever been in my life. I wondered if it was possible to express this anger in the breast cancer culture I’d been exploring. So I wrote a letter and posted it on the message board run by the Komen Foundation, the largest of the breast cancer foundations. What I said was:
I was diagnosed 6 months ago and have been through a mastectomy and chemotherapy. I don’t think of myself as a “survivor” because too many women have gone thru the same “treatments” only to have their cancers recur a few years later.
What I am is angry.
Angry about “treatments” which are in fact toxic and debilitating.
Angry about all the emphasis on “early detection” when there is no way of knowing how early any detection is. Some small tumors are very fast-growing and some big ones are very slow. But no one seems to be making the distinction.
Angry about insurance companies: I’m not battling cancer, I’m battling Aetna, which is still refusing to pay for the biopsy…And what about all people without insurance? (Bush wants to cut help for them in his next budget, and I don’t hear anyone from the breast cancer groups screaming.)
Angry about all the sappy pink ribbons, breast cancer teddy bears and other cute accessories when the fact is WOMEN ARE DYING.
And finally, angry that with all the money pouring into research, no one knows what the cause of breast cancer is. If I want to protect my daughter, we need to know the CAUSE.
Anyone else out there sick of the breast cancer hype?”
That’s what I wrote; that’s what I was feeling at the time.
The responses I got were alarming. “Suzy” wrote to say “I really dislike saying you have a bad attitude towards all of this, but you do, and it's not going to help you in the least.” Several women offered to pray for me to achieve a better state of mind.
“Kitty,” however, thought I’d gone around the bend:
You need to run, not walk, to some counseling…Please, get yourself some help and I ask everyone on this site to pray for you so you can enjoy life to the fullest.
It was at this point that I realized that there is nothing feminist—and not much even sisterly—about the culture that has grown up around breast cancer. Because one of the first principles of second wave feminism was that you honor women’s experience and respect their feelings. You don’t tell a woman who’s been raped or assaulted or subject to medical maltreatment to “cheer up” and stop whining. We thought there was something powerful and constructive about anger—I still think there is—because it was anger, more than anything, that made us into tireless activists for women’s health.
But here I was—expressing my heartfelt feelings—and being told by other women who had been through similar experiences to shut up and put on a happy face. To be a “Stepford patient.” I began to suspect that the purpose of the breast cancer culture—with it’s teddy bears, and crayons and cosmetics and pinkness—is to get us to regress to a child-like state, to suspend critical judgment, and get us to accept whatever the medical profession wants to do to us.
Now of course there are—or have been—rationales for all the aspects of breast cancer culture I found so offensive:
Being cheerful is supposed to save year life. Everything depends on your attitude, I was told again and again by the books and websites I consulted. Anger and sorrow will kills you; being upbeat will save you. Having an upbeat culture of breast cancer survivors—with their public displays of energy and athleticism—is justified again and again as a way of getting women to come forward and have their mammograms. If women neglect their annual screenings, it must be because they are afraid that a diagnosis amounts to a death sentence. I was told by doctors and breast cancer establishment figures that beaming survivors, proudly running races and climbing mountains, are the best possible advertisement for routine screening mammograms, early detection, and the ensuing round of treatments. Trouble is: neither of these rationales holds up under close examination.
The idea that attitude can save your life was based on studies purporting to show that women who participate in breast cancer self-help groups are both happier and live longer than those who don’t. More recent studies show that women in support groups may be happier, but they don’t live any longer than the sourpusses and social isolates who don’t go to groups.
I’m all for support groups—it’s just that they don’t count as form of treatment! And I’m all for being happy, but it won’t save your life.
As for the need to have a highly visible, cheerful, breast cancer culture in order to get women to get “squished”—the Oct 20 issue of the Lancet carried a study of past studies of the effectiveness of screening mammography—a study showing that all the past studies were flawed and that mass mammography screening does nothing to lower a country’s breast cancer mortality rate.
We haven’t heard the last word on this, and the breast cancer establishment is scrambling to find some new evidence that mammograms are worth it. But for now: fact is, they don’t seem to do much, as some doctors have suspected for a long time. Ten years ago, the famous British surgeon Michael Baum called routine screening mammography “one of the greatest deceptions perpetrated on the women of the western world.”
In other words, the establishment breast cancer culture—represented by the races for the cure, the pink ribbons and teddy bears—rests on a paradigm that has been disproved and discredited.
We don’t need to be cheerful. And we may not need to get those mammograms every year—which means we don’t need all this breast cancer “awareness’ that the corporations and the foundations are always encouraging.
So what does it hurt to have this massive breast cancer culture? You could say: whatever gets you through the night…
But there are at least 2 major problems with it:
First, the breast cancer culture has encouraged a dangerous complacency about current medical approaches to breast-cancer treatment. Implicit in all the pink ribbons and the drumbeat for regular mammograms was the promise that your cancer could be cured—if only you bring it to the doctors' attention early enough. In other words, there’s nothing wrong with the so-called treatments—the burden is on you to get your tumor detected “early.”
But as I wrote to the Komen message board: not all small tumors are "early" and more easily treated. In fact, there is no single disease “breast cancer”—probably a multitude of diseases of various degrees of virulence. But right now, they’re all being treated as a single disease.
Worse, current treatments—surgery, chemotherapy and radiation—carry no guarantee of long-term survival and are notoriously debilitating and disfiguring themselves. Every year, more than 40,000 American women die of breast cancer, large numbers of whom had duly submitted to screening mammograms and to the nightmarish treatments that ensued.
Even mammograms are something to worry about: Only one carcinogen has been definitely established as a cause of breast cancer, and that is ionizing radiation of the kind emitted by mammography machines.
A second big problem with the pink ribbon culture: While they want a cure—we ALL do—they say almost nothing about the need to find the CAUSE of breast cancer, which is very likely environmental. This omission makes sense: breast cancer would hardly be the darling of corporate charities if its complexion changed from pink to green.
But by ignoring or underemphasizing the issue of environmental causes, the pink-ribbon crowd function as willing dupes of what could be called the Cancer Industrial Complex: by which I mean the multinational corporate enterprise which with the one hand doles out carcinogens and disease and, with the other, offers expensive, semi-toxic, pharmaceutical treatments. Breast Cancer Awareness month, for example, is sponsored by AstraZeneca (the manufacturer of Tamoxifen) which until 1999 was also the fourth largest producer of pesticides in the United States, including at least one known carcinogen.
So the more I immersed myself in the pink ribbon culture – during those awful months of chemo last year—the more disgusted I got. But I had one lifeline, one source of hope and genuine sisterhood: My cousin happened to send me three back issues of the Breast Cancer Action newsletter. I read them cover to cover, absorbing information, thrilled to find other women who had confronted the disease and managed to keep their wits about them and their dignity intact.
I am deeply grateful that Breast Cancer Action was there for me when I needed it most. It is one of the few voices of clarity and consistently feminist determination within the vast sea of pink ribbons out there, and I’m here to ask you—implore you, in fact—to help it not only survive but grow.
I know it can, because when I published my thoughts on the pink ribbon culture—in Harpers last October—I was deluged with letters from women saying: Thank god, somebody feels the same way I do! Here’s a project I’d like to see BCA have the resources to launch: a website for women don’t want teddy bears and ribbons, who want ACTION! I’d like to see an interactive website to connect these women to each other, because this is what I needed a year ago—not to mention probably for the rest of my life. I’d call it “bad girls of breast cancer”—like the BCA t-shirt. This is MY dream for BCA and I hope you’ll help make it possible.
Because we don’t need to be infantilized when we’re dealing with a potentially fatal disease, we don’t need to be patronized with cosmetics and jewelry, and told to keep smiling, no matter what.
We don’t need more “awareness” of breast cancer—we’re VERY aware, thank you very much. We need treatments that work, and above all, we need to know the cause of this killer, so we can stop it before it attacks another generation.
And we certainly don’t need a breast cancer culture that, by downplaying the possible environmental causes of cancer, serves as an accomplice in global poisoning—normalizing cancer, prettying it up, even presenting it, perversely, as a positive and enviable experience.
What we need is a truly sisterly response to this ghastly disease—one that is both loving and militant, courageous and caring, willing to confront the Cancer Industrial Complex and, when necessary, the entire $16 billion a year breast cancer industry, including the medical profession.
Are you with me? Will you be with me if my cancer returns?
Good!—then this is the time to stand with BCA and give them what you can—your time, your talent, your money!
www.bcaction.org
Saturday, October 30, 2010
Friday, October 29, 2010
Scared Witless
Today I had a needle aspiration of an enlarged and highly suspicious lymph node which might be the sentinal node, the catcher's mitt/drain of cancer cells that get infected first. Not pleasant, but using meditation, I went through it with a compliment by the radiologist who asked what I was doing, since I was so quiet and calm during very very deep penetration of the needle.
As I entered Sloan-Kettering accompanied by British granddaughters, I noticed a table dedicated to integrative medicine at MSKCC. I was overjoyed, since I had been told that S-K was way behind in alternative/integrative methodology. Not so, and I was very pleased as she described their offerings. Every session I take is prepped by the entire team to my specific medical records and treatment, even the relaxation massages. The one thing they are cautious about is the use of herbs, since it is not yet known how they interact with the traditional therapies, and we often don't know what their true content might include. I asked if the director, Wendy Miner, had heard of Ken, and indeed she had.
Upon arriving at home after a fancy East Side NY luncheon with my two gorgeous charges and a day at the Met, I noted that there is a class called Grace and Grit!! I immediately left a message with the LCSW who teaches the program, since the book is at my side constantly now.
Treya's journey began with a lump; I began with an abnormal mammogram which I endure faithfully every September. As with my care providers, her doctor decreased her fear that the lump could be serious, but sent her to a surgeon nonetheless, as did mine. He examined her much as mine did, with similar findings:
p. 31, Treya's diary: "If malignant there is often a slight puckering of the skin over the lump. Since my skin does not do that and the lump is unattached to anything, this doctor also feels that it is probably just a cyst." But when he tries to aspirate with a needle, he hits something hard, and recommends its removal within 3 weeks. Being advised not to treat it lightly, she sees a cancer specialist who recommends a lumpectomy the next day.
How do you feel about the operation, her doctor queries; do you want somethihng to calm you down?
p. 34 "That won't be necessary. I feel fine." (Studies have shown that women who are most afraid before having a lumpectomy for suspected malignancy are less likely to have cancer; those who are calm are more likely to have cancer.)"
Why is this?
I am presuming that it is because the cells "know" in some way whether there is a disease process at work. I will be writing and reporting on this aspect of the UL/UR as the days, weeks, and months go on.
When Ken and Treya receive the aweful news about the lump, Ken writes:
p. 35: "Strange things happen to the mind when catastrophe strikes. It felt like the universe turned into a thin paper tissue, and then someone simply tore the tissue in half right in front of my eyes....A tremendous strength descended on me, the strength of being totally jolted and totally stupefied...As Samuel Johnson drily commented, the prospect of death marvelously concentrates the mind."
My own reaction was guided by old patterns born from a lifetime of dealing with unpredictable psychotic breaks by relatives: I became stone cold hard. As the nurse fussed around me asking how I was doing hearing the very bad news, I shot back at her dismissively by holding out my steady hands: "Does it look like I'm not handling the news?" But of course I really was not handling the news well at all.
I was stone cold hard angry. At everyone. At the cancer. At the professional environment that over 2 1/2 years of harassment caused my immune system to cease protecting me and that led the doctor to inform me that such an environment was "a recipe for breast cancer." At some of my colleagues who were too nervous to come to my defense.
I was vaccillating wildly between flight and flight. From childhood I had learned ther clever adaptive trick of dissociation. I could feel the tug on my self to flee, to blank out, to become numb. I could register no emotions at that time, but knew that somewhere there was a child tugging at mommy's skirt pleading to get away from this scary place.
I stalked out of my local cancer center, so beautifully, tastefully and softly appointed to soothe the most frazzled patient. "You don't fool me", I warned it mentally as I glared back at it over my shoulder. I'm in for a horrible time and nothing is going to substitute for the pain and fear that will engulf my life from here on out.
The other thoughts spearing me as I got into my car to return home did not include, "why me?" Of course it was me. The shitty things in my life just keep on coming, don't they? And here I thought magically that once healed of a virulent form of PTSD, I had done my time in hell. Wrong, solider, you have to re-up, this time in the Cancer Zone. Bad karma? Prior life I did something really really aweful? Maybe my mother was right, and there IS a curse on our family?
p. 39-40 From Treya's diary: "This is real. This is happening to me. I lie in bed rigid with shock and disbelief as the world lies quiet around me....I have cancer. I have breast cancer. I believe this is true and, at the same time, I do not believe it; I cannot let it in....
"CANCER. CANCER. CANCER. This cannot be undone, this cannot be erased. CANCER. A cloud of voices, images, ideas, fears, stories, photographs, advertisements, articles, movies, television shows arises around me, vague, shapeless, but dense, ominous. These are the stories my culture has collected around this thing, 'the big C'"
p. 42: "Illness" versus "sickness"....This distinction stayed with me since my first reading. Ken defines "illness" as the actual disease process facing the person, be it a broken bone or a malignant tumor. It has medical and scientific dimensions, and is more or less value-free. A typical LR entity.
"Sickness', on the other hand, is how the person's culture faces him with that illness, with all the judgments, fears, hopes, myths, stories, and values---typical LL entities. "If the culture treats a particular illness with compassion and enlightened understanding," writes Ken, then sickness can be seen as a challenge, a healing crisis and opportunity. With the recent publication of books on ther "breast cancer enterprise", we would do well to look closely at the LL aspects.
As of tonight, I have been able to rest pretty staqbly in Kosmic consciousness, supported and surrounded by being aware as a manifest being experiencing this pain, and an infinite being who hasd never entered time or space. Neither can be held alone; both must be understood, or else there exists spiritual bypass OR endless suffering.
As I entered Sloan-Kettering accompanied by British granddaughters, I noticed a table dedicated to integrative medicine at MSKCC. I was overjoyed, since I had been told that S-K was way behind in alternative/integrative methodology. Not so, and I was very pleased as she described their offerings. Every session I take is prepped by the entire team to my specific medical records and treatment, even the relaxation massages. The one thing they are cautious about is the use of herbs, since it is not yet known how they interact with the traditional therapies, and we often don't know what their true content might include. I asked if the director, Wendy Miner, had heard of Ken, and indeed she had.
Upon arriving at home after a fancy East Side NY luncheon with my two gorgeous charges and a day at the Met, I noted that there is a class called Grace and Grit!! I immediately left a message with the LCSW who teaches the program, since the book is at my side constantly now.
Treya's journey began with a lump; I began with an abnormal mammogram which I endure faithfully every September. As with my care providers, her doctor decreased her fear that the lump could be serious, but sent her to a surgeon nonetheless, as did mine. He examined her much as mine did, with similar findings:
p. 31, Treya's diary: "If malignant there is often a slight puckering of the skin over the lump. Since my skin does not do that and the lump is unattached to anything, this doctor also feels that it is probably just a cyst." But when he tries to aspirate with a needle, he hits something hard, and recommends its removal within 3 weeks. Being advised not to treat it lightly, she sees a cancer specialist who recommends a lumpectomy the next day.
How do you feel about the operation, her doctor queries; do you want somethihng to calm you down?
p. 34 "That won't be necessary. I feel fine." (Studies have shown that women who are most afraid before having a lumpectomy for suspected malignancy are less likely to have cancer; those who are calm are more likely to have cancer.)"
Why is this?
I am presuming that it is because the cells "know" in some way whether there is a disease process at work. I will be writing and reporting on this aspect of the UL/UR as the days, weeks, and months go on.
When Ken and Treya receive the aweful news about the lump, Ken writes:
p. 35: "Strange things happen to the mind when catastrophe strikes. It felt like the universe turned into a thin paper tissue, and then someone simply tore the tissue in half right in front of my eyes....A tremendous strength descended on me, the strength of being totally jolted and totally stupefied...As Samuel Johnson drily commented, the prospect of death marvelously concentrates the mind."
My own reaction was guided by old patterns born from a lifetime of dealing with unpredictable psychotic breaks by relatives: I became stone cold hard. As the nurse fussed around me asking how I was doing hearing the very bad news, I shot back at her dismissively by holding out my steady hands: "Does it look like I'm not handling the news?" But of course I really was not handling the news well at all.
I was stone cold hard angry. At everyone. At the cancer. At the professional environment that over 2 1/2 years of harassment caused my immune system to cease protecting me and that led the doctor to inform me that such an environment was "a recipe for breast cancer." At some of my colleagues who were too nervous to come to my defense.
I was vaccillating wildly between flight and flight. From childhood I had learned ther clever adaptive trick of dissociation. I could feel the tug on my self to flee, to blank out, to become numb. I could register no emotions at that time, but knew that somewhere there was a child tugging at mommy's skirt pleading to get away from this scary place.
I stalked out of my local cancer center, so beautifully, tastefully and softly appointed to soothe the most frazzled patient. "You don't fool me", I warned it mentally as I glared back at it over my shoulder. I'm in for a horrible time and nothing is going to substitute for the pain and fear that will engulf my life from here on out.
The other thoughts spearing me as I got into my car to return home did not include, "why me?" Of course it was me. The shitty things in my life just keep on coming, don't they? And here I thought magically that once healed of a virulent form of PTSD, I had done my time in hell. Wrong, solider, you have to re-up, this time in the Cancer Zone. Bad karma? Prior life I did something really really aweful? Maybe my mother was right, and there IS a curse on our family?
p. 39-40 From Treya's diary: "This is real. This is happening to me. I lie in bed rigid with shock and disbelief as the world lies quiet around me....I have cancer. I have breast cancer. I believe this is true and, at the same time, I do not believe it; I cannot let it in....
"CANCER. CANCER. CANCER. This cannot be undone, this cannot be erased. CANCER. A cloud of voices, images, ideas, fears, stories, photographs, advertisements, articles, movies, television shows arises around me, vague, shapeless, but dense, ominous. These are the stories my culture has collected around this thing, 'the big C'"
p. 42: "Illness" versus "sickness"....This distinction stayed with me since my first reading. Ken defines "illness" as the actual disease process facing the person, be it a broken bone or a malignant tumor. It has medical and scientific dimensions, and is more or less value-free. A typical LR entity.
"Sickness', on the other hand, is how the person's culture faces him with that illness, with all the judgments, fears, hopes, myths, stories, and values---typical LL entities. "If the culture treats a particular illness with compassion and enlightened understanding," writes Ken, then sickness can be seen as a challenge, a healing crisis and opportunity. With the recent publication of books on ther "breast cancer enterprise", we would do well to look closely at the LL aspects.
As of tonight, I have been able to rest pretty staqbly in Kosmic consciousness, supported and surrounded by being aware as a manifest being experiencing this pain, and an infinite being who hasd never entered time or space. Neither can be held alone; both must be understood, or else there exists spiritual bypass OR endless suffering.
Tuesday, October 26, 2010
In Situ Experience
In situ, for those with some medical/biological knowledge, is the "best" kind of breast cancer to have. It refers to tumots that have not grown beyond their site of origin and have not invaded neighboring tissue. I did not have that type of limited cancer, which they can basically scoop out. The other meaning of in situ means "in the site of", and it is that situated awareness that involves me tonight. I wanted to go back to Grace and Grit which I had put off reading until just a few years ago. It is an unforgettable, moving and unbearably touching love story for the ages. But I am not situated anywhere near that tender, frightening, ennobling, and transformational context. As my doctor told me, "You have run-of-the-mill breast cancer." I am going back into Ken's and Treya's story to glean what I can of the spiritual journey taken by both of them, and to understand where I am situated, personally, medically, and culturally.
Page 19: "The essence pf mysticism is that in the deepest part of your own being, in the very center of your own pure awareness, you are fundamentally one with Spirit, one with Godhead, one with the All, in a timeless and eternal and unchanging fashion."
I grew up in a schizoid-inducing household which required the greatest adaptive talents my little self could muster in order to keep Spirit alive. I was, from my earliest memories, a mystic, and was encouraged to follow this aspect of myself by my wildly creative mother. I received no direction for my own development, but heard enough family-authenticated stories to know that my mother was capable of rare, esoteric mystical abilities which I could never match. She was such an adept at self-hypnosis that universities would call on her to demonstrate her rarest of abilities: cessation of bleeding when a knitting needle passed through her arm; writing with both left and right hands simultaneously; and having eye surgery with no anesthesia at 87 years of age while in a self-inducedf trance with rapid healing, no pain, and no bleeding. I knew that some people could access these rarified states of consciousness, but it seemed to me at the time that they were joined with severe pathologies. It was not until adulthood that I came to tease apart my mother's mystical abilities from her pathologies. In other words, why would I want to follow her in developing mystical abilities if it seemed to be joined with pathologies?
What a relief it was later in my life for me to read about mysticism, and the Self! What a gift to be offered a clean, clear Identity!
But decades had been lost to my constricted attitude towards any "development" or exposure to mysticism. Instead I turned to political science and law, which I saw as bright line understandings of the highest level of human development and action. Growing up in the South, in Dallas, with the John Birch Society, White Citizens' Council, KKK, and Kennedy's assassination framing my maturation, I was more drawn to that pathological aspect of humanity and what caused it. How might the Lower Right be best designed to contain and to elevate those who hated? Surely education and understanding of the brilliance of our Founding Fathers could provide a rational framework to demonstrate to those capable of "right action" to work for the reparations of the poor and marginalized, and thus marginalize those who hated.
I basically walked through the '60s enamored of Amber values. One reason that I eshewed the sex/drug/guru influences was that I had intuitively reckoned with Green's misunderstanding of its Red followers. I saw it again and again, in Dallas, in New Orleans where I went to college, and at Columbia where I did my graduate work. If Green could not *grok* the toxic effects of its Red camp followers, then I certainly had no respect for the group and had no interest in following along. So I missed out on the benefits of the hippies' parade, and dubbed myself a "situationist", meaning that I would assess each event on its own merits, and either concur or turn my back.
We will pass through more decades, with the '70s containing my employment and marriage and increasingly unbearable personal life from within and without. The miracle at the end of the decade was the birth of my daughter, and my final embrace of "cutting-edge" health ideas centering around childbirth. I did my usual obsessive informational search when I found myself pregnant in 1979, and discovered that there was a birthing method that had the safety of the hospital with a more natural birthing experience. I became trained in the Bradley Method, and fought with the hospital to permit me to give birth sitting up. For those much younger readers, the doctors had imposed on women in labor that they do calesthenics by doing sit-ups: lay down, then pop up for a contraction and push, then lay down again, and repeat....I won my battle, and can proudly state that I was the first woman to be permitted to give birth while sitting up!
I feel compelled here to explain my lag in accepting and understanding what so many have grown up knowing and practicing when it comes to alternative methods of healing and birthing. I was no pioneer until 1979, and had to do years of catching up, including with my situation today.
In the '80s I became a lawyer with a heavy matrimonial and ctiminal practice. At the same time my personal life deteriorated into a daily battle to get out of bed and face.....well, let us try to compare it with being at war without the bullets, death, and physical destruction. I do not wish to recite the daily grief to which I was exposed, since I feel that is not in service of my current need to heal and strengthen. But by then I was on a search for someone...very special...who could synthesize the inner and outer experiences of my life. I found Ken's work in 1982, and followed a slow but steady path by reading through his bibliographies. I was so desparate for something to make my unmanageable life coherent. I figured that since neither law nor political science had the framework I needed, I would read through quantum physics, which I did, dfevouring over 100 books and taking copious notes, writing articles I never published, and creating lesson plans I never got to teach.
Yet there was Ken cautioning that modern physics was niot mystical and that adoption of a quantum theory would suffice for a spiritual worldview.
p. 21-2: "To use Plato's analogy of the Cave: physics gives us a detailed picture of the shadows in the Cave (relative truth), whereas mysticism gives us a direct introduction to the Light beyond the Cave (absolute truth). Study the shadows all you want, you still won't have light....If you hook your God to today's physics, then when that physics slips, that God slips with it." So quantum phsycis is a really neat thing to understand and to chat about with others, but it isn't IT. Where to next?
Finally, in 1990 with the death of my beloved father, I am plunged into learniung all about my Jewish roots which had not grown very deep in the hard red texas soil, learning to say Kaddish for him, joining the temple choir, reading, reading, reading, and then hearing Deepak Chopra talk about quantum physics and meditation. I began to watch him on TV, read his books, and took meditation lessons from his top aide. I then found out that Jews mediate too, gee, who knew? I began a daily and negative meditation practice while keeping a log as they had advised. Each day I wrote about my pitifully sad attempts to meditate, how I was one of those who would never get it "right"; it became hard to read my entries of defeat and I threw the journal away. But I kept trying, really really hard.
In 2001 I found I could no longer subscribe to Judaism and went into deep reading on zen, which suited my emerging understanding of what Ken had been writing about. In 2003 I started to work with Ken on Integral University and was exposed to so many brilliant teachers who basically continued the rewiring that Ken had begun on my consciousness. I began to pedal faster and faster to catch up with my age cohort, all who had had deep spiritual experiences and practices over decades. I was really a beginner, with more in common with the 20-somethings.
In 2006, with only 2 years left in my teaching career before I could retire with full pension and continue my legal and Integral careers, I entered a time at work of such bleakness and woundedness that it still inspires nightmares. Jealousy, revenge, power, all came into play in a situation where I had no means of fighting back or even leaving the game. I became chronically ill, and my doctor told me that my immune system had become so taxed by daily stress that it could no longer protect me. He blatantly told me that I would not live out 6 months of my last year of teaching. My lawyer told me my situation was the worst case of workplace harassment he had seen in his 25 year career against major corporations.
I left teaching on Dec. 21, 2007 with a confidentiality agreement and settlement in tow. I was diagnosed with PTSD and after leaving one therapist found THE one who could give me the spiritual healing that I badly needed. I finished this past summer, and was in the leave-taking part of therapy when I got a bad mammogram in September.
Treya's lump was discovered shortly before her wedding to Ken. As with me, she and I were assured by every medical provider that it was probably nothing. In my case I was repeatedly told that 80% of women with my...[name your symptom]...did not have cancer. Next bad news, and I was assured that 80% of that group did not have cancer....until I was told that 80% of women who have cancer have my type of cancer.
Off to Sloan-Kettering tomorrow for more testing and more information that I really do not wish to hear, much less absorb.
Page 19: "The essence pf mysticism is that in the deepest part of your own being, in the very center of your own pure awareness, you are fundamentally one with Spirit, one with Godhead, one with the All, in a timeless and eternal and unchanging fashion."
I grew up in a schizoid-inducing household which required the greatest adaptive talents my little self could muster in order to keep Spirit alive. I was, from my earliest memories, a mystic, and was encouraged to follow this aspect of myself by my wildly creative mother. I received no direction for my own development, but heard enough family-authenticated stories to know that my mother was capable of rare, esoteric mystical abilities which I could never match. She was such an adept at self-hypnosis that universities would call on her to demonstrate her rarest of abilities: cessation of bleeding when a knitting needle passed through her arm; writing with both left and right hands simultaneously; and having eye surgery with no anesthesia at 87 years of age while in a self-inducedf trance with rapid healing, no pain, and no bleeding. I knew that some people could access these rarified states of consciousness, but it seemed to me at the time that they were joined with severe pathologies. It was not until adulthood that I came to tease apart my mother's mystical abilities from her pathologies. In other words, why would I want to follow her in developing mystical abilities if it seemed to be joined with pathologies?
What a relief it was later in my life for me to read about mysticism, and the Self! What a gift to be offered a clean, clear Identity!
But decades had been lost to my constricted attitude towards any "development" or exposure to mysticism. Instead I turned to political science and law, which I saw as bright line understandings of the highest level of human development and action. Growing up in the South, in Dallas, with the John Birch Society, White Citizens' Council, KKK, and Kennedy's assassination framing my maturation, I was more drawn to that pathological aspect of humanity and what caused it. How might the Lower Right be best designed to contain and to elevate those who hated? Surely education and understanding of the brilliance of our Founding Fathers could provide a rational framework to demonstrate to those capable of "right action" to work for the reparations of the poor and marginalized, and thus marginalize those who hated.
I basically walked through the '60s enamored of Amber values. One reason that I eshewed the sex/drug/guru influences was that I had intuitively reckoned with Green's misunderstanding of its Red followers. I saw it again and again, in Dallas, in New Orleans where I went to college, and at Columbia where I did my graduate work. If Green could not *grok* the toxic effects of its Red camp followers, then I certainly had no respect for the group and had no interest in following along. So I missed out on the benefits of the hippies' parade, and dubbed myself a "situationist", meaning that I would assess each event on its own merits, and either concur or turn my back.
We will pass through more decades, with the '70s containing my employment and marriage and increasingly unbearable personal life from within and without. The miracle at the end of the decade was the birth of my daughter, and my final embrace of "cutting-edge" health ideas centering around childbirth. I did my usual obsessive informational search when I found myself pregnant in 1979, and discovered that there was a birthing method that had the safety of the hospital with a more natural birthing experience. I became trained in the Bradley Method, and fought with the hospital to permit me to give birth sitting up. For those much younger readers, the doctors had imposed on women in labor that they do calesthenics by doing sit-ups: lay down, then pop up for a contraction and push, then lay down again, and repeat....I won my battle, and can proudly state that I was the first woman to be permitted to give birth while sitting up!
I feel compelled here to explain my lag in accepting and understanding what so many have grown up knowing and practicing when it comes to alternative methods of healing and birthing. I was no pioneer until 1979, and had to do years of catching up, including with my situation today.
In the '80s I became a lawyer with a heavy matrimonial and ctiminal practice. At the same time my personal life deteriorated into a daily battle to get out of bed and face.....well, let us try to compare it with being at war without the bullets, death, and physical destruction. I do not wish to recite the daily grief to which I was exposed, since I feel that is not in service of my current need to heal and strengthen. But by then I was on a search for someone...very special...who could synthesize the inner and outer experiences of my life. I found Ken's work in 1982, and followed a slow but steady path by reading through his bibliographies. I was so desparate for something to make my unmanageable life coherent. I figured that since neither law nor political science had the framework I needed, I would read through quantum physics, which I did, dfevouring over 100 books and taking copious notes, writing articles I never published, and creating lesson plans I never got to teach.
Yet there was Ken cautioning that modern physics was niot mystical and that adoption of a quantum theory would suffice for a spiritual worldview.
p. 21-2: "To use Plato's analogy of the Cave: physics gives us a detailed picture of the shadows in the Cave (relative truth), whereas mysticism gives us a direct introduction to the Light beyond the Cave (absolute truth). Study the shadows all you want, you still won't have light....If you hook your God to today's physics, then when that physics slips, that God slips with it." So quantum phsycis is a really neat thing to understand and to chat about with others, but it isn't IT. Where to next?
Finally, in 1990 with the death of my beloved father, I am plunged into learniung all about my Jewish roots which had not grown very deep in the hard red texas soil, learning to say Kaddish for him, joining the temple choir, reading, reading, reading, and then hearing Deepak Chopra talk about quantum physics and meditation. I began to watch him on TV, read his books, and took meditation lessons from his top aide. I then found out that Jews mediate too, gee, who knew? I began a daily and negative meditation practice while keeping a log as they had advised. Each day I wrote about my pitifully sad attempts to meditate, how I was one of those who would never get it "right"; it became hard to read my entries of defeat and I threw the journal away. But I kept trying, really really hard.
In 2001 I found I could no longer subscribe to Judaism and went into deep reading on zen, which suited my emerging understanding of what Ken had been writing about. In 2003 I started to work with Ken on Integral University and was exposed to so many brilliant teachers who basically continued the rewiring that Ken had begun on my consciousness. I began to pedal faster and faster to catch up with my age cohort, all who had had deep spiritual experiences and practices over decades. I was really a beginner, with more in common with the 20-somethings.
In 2006, with only 2 years left in my teaching career before I could retire with full pension and continue my legal and Integral careers, I entered a time at work of such bleakness and woundedness that it still inspires nightmares. Jealousy, revenge, power, all came into play in a situation where I had no means of fighting back or even leaving the game. I became chronically ill, and my doctor told me that my immune system had become so taxed by daily stress that it could no longer protect me. He blatantly told me that I would not live out 6 months of my last year of teaching. My lawyer told me my situation was the worst case of workplace harassment he had seen in his 25 year career against major corporations.
I left teaching on Dec. 21, 2007 with a confidentiality agreement and settlement in tow. I was diagnosed with PTSD and after leaving one therapist found THE one who could give me the spiritual healing that I badly needed. I finished this past summer, and was in the leave-taking part of therapy when I got a bad mammogram in September.
Treya's lump was discovered shortly before her wedding to Ken. As with me, she and I were assured by every medical provider that it was probably nothing. In my case I was repeatedly told that 80% of women with my...[name your symptom]...did not have cancer. Next bad news, and I was assured that 80% of that group did not have cancer....until I was told that 80% of women who have cancer have my type of cancer.
Off to Sloan-Kettering tomorrow for more testing and more information that I really do not wish to hear, much less absorb.
Integral Experience with Breast Cancer
I am now in my 4th week after my diagnosis of infiltrating breast cancer and already have had to digest more technical and biological information than I can handle emotionally and cognitively. I have a frightening diagnosis, although not terminal (at least at this point), I have a top-notch surgeon and a surgery date of Nov. 4th, more tests that will be somewhat uncomfortable prior to surgery, and then after surgery I drop off into a liminal space of drugs, pain, discomfort, shocks to my body-mind, and decisions which I will probably make in line with my surgeon's and oncologist's recommendations. I will do my usual job of researching but not to the point of total confusion. I am falling into the "she-ro" role already of being the happy, upbeat patient with the little pink ribbon on my blouse and tons of great laugh-lines that will uplift me and my companions.
But I am also deeply embedded in an Integral perspective and have begun the first Integral seminary program at One Spirit Seminary in New York City. I have students for whom I will be a role model and source of authenticity, and I must also learn to continue investing in my own deep self-knowledge. I had wanted to start this blog on the day of diagnosis, but frankly, found it very difficult to sort through the cultural and personal feelings. A new book has just been published called "Pink Ribbon Blues" about the "tyranny" of the pink ribbon corporate culture that has pushed women into what the author feels is an imposed role of idealized patient who is assertive and boundlessly optimistic while remaining feminine and sexy despite the depredations of disease and treatment.
I want to walk this walk with as much clarity as possible, and see through into my body, my psyche, my family and my culture, and perhaps shine yet another light as guidance to the women who share an Integral perspective and who may be faced with this disease.
But I am also deeply embedded in an Integral perspective and have begun the first Integral seminary program at One Spirit Seminary in New York City. I have students for whom I will be a role model and source of authenticity, and I must also learn to continue investing in my own deep self-knowledge. I had wanted to start this blog on the day of diagnosis, but frankly, found it very difficult to sort through the cultural and personal feelings. A new book has just been published called "Pink Ribbon Blues" about the "tyranny" of the pink ribbon corporate culture that has pushed women into what the author feels is an imposed role of idealized patient who is assertive and boundlessly optimistic while remaining feminine and sexy despite the depredations of disease and treatment.
I want to walk this walk with as much clarity as possible, and see through into my body, my psyche, my family and my culture, and perhaps shine yet another light as guidance to the women who share an Integral perspective and who may be faced with this disease.
Subscribe to:
Posts (Atom)