Archive for December, 2015

posted by Amy on Dec 27

The lectionary text from the Gospel for today is the story in Luke about Jesus and his parents going to the Temple in Jerusalem, as they did every year. On the way back, Mary and Joseph notice Jesus is not with the group. They go back to look for him, and find him in the Temple, talking to the scholars and holy people. When Mary and Joseph ask what’s up, Jesus says he’s going about his father’s business.

First, why did it take them so long to notice he wasn’t with them on the return trip? That’s easy. The men and women would have walked in sex-segregated groups. The children would be with the women. Jesus was 12–about the age a Jewish boy is considered an adult, so he had the option of walking with the men. Most likely Mom thought he was with Dad, and Dad either wasn’t used to keeping track of him, or assumed he was with his mother.

I heard a children’s sermon on this text today. It started out fine. The man said we don’t know what kind of childhood Jesus had, because the Bible doesn’t say. That’s true, but I think we can guess how it was. Both Mary and Joseph were visited by angels before Jesus was born, and they were each told the child would be the special, chosen son of God. Magi from the East came to visit Jesus when he was two years old. They brought extravagant gifts and worshiped him. So I’m pretty sure Mary and Joseph respected, protected, and adored Jesus. They treated him as God’s precious son. They showered him with love. They gently taught and led him. You would not humiliate, frighten, or beat a child you knew to be holy and anointed. You’d take very seriously your role as a steward of the Savior of the world.

Then the man giving the children’s message said he thought the point of the story was that Jesus obeyed his parents and returned home with them when they found him in the Temple and asked him to leave. The speaker went on to observe that the commandment to “honor your father and mother” comes with a promise: “so your days may be long upon the earth.” That’s all well and good for honorable, mature, loving parents who treat their kids kindly and take responsibility for the precious child that God has put in their care. Unfortunately, the vast majority of children in the world are treated harshly and cruelly. Their humanity is denied. Their feelings are discounted or dismissed. They are beaten, sometimes starting in infancy, to make them obedient. The man said the children should respect, honor, and obey their parents. He said where he comes from, the teachers carry sticks that they use to beat the children, to make them obey.

The flip side of “so your days may be long upon the earth” is, “or your parents might have to take drastic measures.” The Old Testament provides for putting disobedient children to death by stoning.

Furthermore, the promise of long life is fraudulent. Being required to honor and defend dishonorable parents, having to forget the terror, rage, confusion, and suffering they caused you when you were small and defenseless, struggling to make sense of the violence and hatred, being told it is “for your own good,” cause an untold amount of suffering throughout life, and lead to premature death. Psychologists and psychiatrists are just beginning to recognize something they call “complex developmental trauma” that results from habitual child abuse. Addiction, risky behavior, depression, domestic violence, and all sorts of life-threatening illnesses, especially autoimmune diseases, pulmonary diseases, and cancer, disproportionately affect people who were maltreated as children.

Every human being is a precious child of God. Every person deserves love, attention, respect, kindness, and gentle, warm, safe contact with his or her caregivers. Every parent is, or should be, a steward of God’s precious gift of life. Children raised compassionately and nonviolently love their parents naturally and unconditionally. They don’t have to be commanded to honor them. They merely reciprocate the honor they’ve been shown. They obey because they trust and respect their parents. They trust and respect their parents because their parents are respectable and trustworthy.

It’s never too late to reparent yourself, and give yourself the love, kindness, compassion, and respect that you deserve. It’s also never too late to begin treating your children as precious children of God. You probably can’t do it alone, but there are good, effective therapies for repairing the weak spots caused by uneven parenting. If you can’t afford therapy, join a Twelve Step group and get a good sponsor.

Edited for clarity January 3, 2016

 

 

 

 

 

posted by Amy on Dec 22

Here we are again. Another trip around the sun. Another winter solstice, when those of us in the northern hemisphere can look forward to the days slowly getting longer again. We are in the deep midwinter now, though the coldest, snowiest days are still ahead. It’ll take a few months for those extra rays of sunshine to warm the soil and wake up the plants.

Forgive me if this is too facile an analogy, but living with cancer is like experiencing seasons, including the “flywheel effect” of not seeing results until later. I had that great scan in October, but I’m still bald, I still have neuropathy, my stomach still hurts, and I still get slammed with fatigue, diarrhea, and other random annoyances. I’m still getting the heavy chemo that brought me that beautiful scan. I will have one more treatment, then wait three more weeks, then get another scan. If that scan shows “no evidence of disease,” then I’ll drop the heavy stuff and seek stability (and some sort of longevity) on the two antibody drugs that I also get. I’ll still be getting infusions every three weeks, but it will be easier to tolerate. And my hair will grow back.

Of course the major difference between the seasons and this cancer roller coaster is the intervals are impossible to predict. I saw a post last week about a young woman with metastatic breast cancer who died recently. Four months ago she was “NED” (i.e. she had “no evidence of disease.”) Another woman with a diagnosis similar to mine had no evidence of disease for two years on the same two antibody drugs that I get, but her cancer has come roaring back and is making her very sick. Most likely, something like that will happen to me. Not yet, but at some point.

I don’t know what will happen, or when, or exactly how; however, I can be sure I will die from some cause at some point, and it won’t necessarily be this cancer. I always wear a seat belt. I look both ways before crossing a street. I use a hand rail on stairs. I got rid of a pair of shoes that were a bit too large and tended to make me trip. I had my first colonoscopy.

As Aristotle might have said, “All women are mortal. Amy is a woman; therefore, Amy is mortal (which means she will die.)” Everyone “knows” that, but if you’re healthy it’s easy to put off thinking about it. With stage IV cancer it’s always in view. Sometimes it’s staring me in the face. Most of the time I just glimpse it in the corner of my eye. But it’s almost always there.

My wish for all of us is to be just a bit more conscious of our mortality. Don’t put off doing what makes you feel most alive, most connected, most real. At a high school reunion in 2001 a man made a speech to that effect. He must have known he was sick–within six months we heard he had died. And don’t take your relationships for granted. Especially me. I don’t want you constantly worrying about my health, and I don’t want you to suffer. But remember I’m on borrowed time. Given a choice between doing something together now and putting it off until later, let’s choose an earlier date. Because you never know.

And don’t wait until you get sick to start living fully, because then you might not have the time, money, energy or physical ability to do those things you always wanted to do. Seize the day, or the hour, or the moment. Live. Breathe. Be grateful. Be aware.

Here comes the sun. Praise be.

 

posted by Amy on Dec 11

I moved across country at the end of August, 2015, so I had to get a new oncologist. When I was first diagnosed my first oncologist told me her goal for me was “permanent remission, normal lifespan.” And why not? Just because very few people with my diagnosis even make it five years (22%) doesn’t mean we shouldn’t try to beat the odds. For the record, my cancer was diagnosed 56 months ago, and I’m still here.

The last time I saw my new oncologist, we were planning the schedule for my next two infusions. Because of my travel schedule and Thanksgiving I ended up with a 4 1/2 week interval between visits. (We’re making up for it with a 2 1/2 week interval on the next round. The “standard” is three to four weeks between infusions.) The doctor said something odd, though. She said, “If we were treating you with curative intent I’d insist on sticking to the schedule.”

“Curative intent” is a term of art in cancerland. It’s one of those phrases doctors use that should never be uttered in the presence of patients. (Another one is “salvage,” to refer to third-line, fourth-line, and later treatments after the ones that seemed most promising either didn’t work or quit working. To a lay person, that’s just a horrible word.) I think she was referring to the fact that with an early stage breast cancer diagnosis there’s a reasonable chance of making the cancer go away forever. It works that way about 70% of the time. But for someone like me whose cancer has metastasized, the intent is palliative and not curative.

Palliative care is a holistic, integrative effort to give a person the best possible quality of life, controlling pain and other symptoms effectively and using medicine judiciously, keeping in mind the difficult balance between benefits and costs. It doesn’t mean, as I used to think, that the underlying illness is not treated. It just means a different calculus is applied than in situations where the doctors can say, “This course of treatment will be hellish for you, and it will rock your world for a year, but there’s a good chance that when it’s over you’ll get to go back to what you were doing before your diagnosis.”

I have two things to say about that. First of all, I don’t think it’s ever possible to “go back” after something as devastating and momentous as cancer diagnosis and treatment. It changes everything. It forces fears, doubts, existential questions and past trauma to the surface, and the ways people with cancer and those closest to them choose to handle those things will inevitably alter the course of their lives. Secondly, a crisis like cancer presents an opportunity to think about big questions of meaning, purpose, and legacy. There may be stuff you were doing that was not serving you well, or not leading to worthy outcomes. Confronting one’s own mortality can be traumatic, but some people experience “post-traumatic growth.” To the extent that happens, then it’s appropriate to say they’ve been healed. If “cure” means putting everything back the way it was, it may be too limited a goal. Maybe you were merely surviving before. To me, healing means choosing to thrive. And for a human being to thrive, there has to be a sense of meaning and purpose, and there has to be loving interaction.

Regardless of whether health care providers think there’s “curative intent” in a given situation, we can all choose healing. Whatever was toxic, destructive, or bad before can be replaced with better choices, better thoughts, and better behaviors, and that will result in a better life. Something about my prior life resulted in me getting cancer. Maybe that’s just a matter of bad luck, but I’m not fatalistic. Whatever cards I’m dealt, I have choices in how to play them. The past is an illusion. It’s over and done. I can’t go back, nor do I want to. The future–for anyone–is uncertain. The only thing I have any control over is the present moment. And in every moment of now, I choose to rise above fear, anger, bitterness, regret, and envy. I choose to cultivate awareness, equanimity, creativity, forgiveness, compassion, and kindness. I choose to stay in the light.

Whether or not that means I’ll get that “permanent remission, normal lifespan” is almost beside the point. If I’m living on borrowed time, then I definitely want to make the best of it. If I luck out and get another twenty or thirty years to dance on this beautiful, broken, mysterious, crazy planet, then so much the better.

posted by Amy on Dec 5

Last summer I read two books that explicitly connect trauma and illness. One, by the late Swiss psychiatrist Alice Miller, is called The Body Never Lies; The Lingering Effects of Hurtful Parenting. The other, by Bessel van der Kolk, is called The Body Keeps the Score; Brain, Mind and Body in the Healing of Trauma. Miller wrote many books about what she called “poisonous pedagogy,” the utterly normal but toxic methods of raising children in certain European/American cultures. Van der Kolk is an expert in trauma and healing. I first learned about him in a seminary class called “Theology and Trauma.”

In his book, van der Kolk describes in detail a landmark study conducted by the Centers for Disease control and Kaiser Permanente. In its initial phase from 1995 to 1997, thousands of Kaiser patients were asked about ten specific “adverse childhood events” and then their answers were linked with their medical records. The ten questions related to physical, emotional, and sexual abuse and other sorts of adverse experiences. Each yes answer is scored as one point; therefore, a person’s ACE score can be any whole number between zero and ten. Van der Kolk says, “The ACE study revealed that traumatic life experiences during childhood and adolescence are far more common than expected.” In a mostly white, middle class, middle aged, relatively prosperous sample, only one-third of the respondents had a score of zero.

Van der Kolk describes many correlations between adverse childhood events and adult outcomes. For example, 66% of women and 35% of men with an ACE score of four or higher are chronically depressed, whereas the overall rate of chronic depression for people with an ACE score of zero is 12%. But I was diagnosed with melanoma in 1999 and metastatic breast cancer in 2011, so the finding that most engaged me was this: Those respondents with an ACE score of six or higher were four times as likely to have cancer. Van der Kolk says, “the ongoing stress on the body keeps taking its toll.”  (As sometimes happens to me when I blog, WordPress won’t let me insert a link, but if you go to http://www.cdc.gov/violenceprevention/acestudy/ you can get current information about this research.)

The book tells of many new and innovative approaches to helping people heal from trauma. It is a hopeful, encouraging book, and I recommend it enthusiastically. But right now I want to focus on what van der Kolk says about the ACE study. The study authors concluded that they had “stumbled upon the gravest and most costly public health issue in the United States: child abuse.” They calculated that “eradicating child abuse in America would reduce the overall rate of depression by more than half, alcoholism by two-thirds, and suicide, IV drug use and domestic violence by three-quarters.” Besides all the suffering, harm, and early death that would be alleviated, the economic effect in reduced medical costs and increased productivity would be worth many billions of dollars. Yet the study has not led to changed child rearing practices or changed priorities in public health.

Alice Miller’s thesis, that “normal” child rearing practices are abusive, toxic, and harmful, and that they cause severe, lifelong damage to the emotional, psychological, and physical health of millions of people, is controversial. She spent her entire career railing against conventional psychoanalysis and trying to get people to take poisonous pedagogy seriously. She wasn’t able to make much of a dent in conventional “wisdom” about child psychology or child rearing. It seems obvious to me that the ACE study goes a long way towards vindicating her. But this is an extremely touchy area. As Miller describes in detail in her books, most people who were abused as children deny it vehemently. And they get extremely defensive whenever they come close to the truth.

I have cancer and I want to heal from it. If possible, I want the cancer to go away. Even if that doesn’t happen, I want to have as healthy, vital, strong, serene, and rich a life as possible in the time I have left. Participation in groups and other work I have done since my diagnosis have led me to a deeper understanding of healing. The body, mind, and spirit are not separate, and healing is not simply a matter of correcting an identified physical malady. One reason I blog and participate in support groups is to share what I learn in hopes of benefiting others.

One day last summer when I tried to talk about Miller, van der Kolk, poisonous pedagogy, childhood trauma, and the ACE study in a group session, the leader forcefully silenced me. She interrupted me twice to make me quit talking. I was not saying that “trauma causes cancer,” though maybe that’s how she heard it. I was trying to say that there is hope for people who have experienced trauma. Brains and nervous systems can be rewired, and brain chemistry can be corrected. She said this line of inquiry was “interesting” but “irrelevant.” She was very agitated. There were only two other patients there that day, and one of them was trying to participate in the discussion as well, so she was silenced too.

I was very hurt. I felt demeaned and rejected. I wanted to walk out, but I stayed until the end of the session and haven’t raised the issue again in that setting. But I’m writing about it because it’s important.

When you get cancer treatment they don’t ask you about past trauma. If you ask for it you can get prescriptions for anxiety or depression, and you can see people who specialize in the psychological care of cancer patients, but as van der Kolk, a psychiatrist, says in his book, psychoactive drugs have their uses, but they only treat symptoms. That can be a significant first step to healing, but it’s not sufficient.

Treatment for people with Stage IV cancer is palliative; there is no “curative intent.” The goal is to control the cancer as well as possible for as long as possible, with acceptable side effects. I understand that. I know it’s based on science. It’s been working quite well for me, and I have no complaints. It appears that, in the same vein, psychiatric treatment for cancer patients is palliative and not curative in intent.

But, as I said, my personal objective is to heal completely (whether or not the cancer goes away, though that is my preferred outcome). Trauma gets lodged in the body, and probably requires some bodily, kinetic solutions such as yoga, walking meditation, and other activities in order to be dislodged. It distorts the “fight, flight, freeze” circuitry of the nervous system. I was in my late 30s before I realized it’s not “normal” to be in a state of heightened alertness all the time. I had to learn to like being in a “resting” state. I had to learn to like serenity. When, in my mid-40s, I figured out I had PTSD, I learned techniques for interrupting the “flooding” that occurs when my PTSD is triggered. Through prayer and meditation I have been cultivating a new baseline state.

I am also much more aware of how certain people and relationships affect me, and I am more willing to protect myself from toxic people and interactions. Growing up, I didn’t expect anyone to take care of me or protect me from harm. As a matter of fact, the people closest to me caused me tremendous harm. Now, as I work on growing up again, I am learning to be a good parent to myself.

When I was first diagnosed in 2011 I worked with guided imagery to heal from cancer. I also obtained imagery and affirmations for trauma, but I only did it a couple of times. It was very, very intense. It seemed too daunting. I didn’t know if I’d live long enough to get that stuff resolved. Recently I’ve revisited the trauma tape, and, as promised in the introduction, the “story” has changed and softened over time. It (along with in-person therapy and journaling) has helped me figure out how I really feel, and what I really want and need. I am becoming more comfortable in my own skin, more authentic, and more real.

 

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