Archive for May, 2017

posted by Amy on May 15

I may have to drop out of one of my online support groups. I’m in favor of the kind of companionship, camaraderie, information, and encouragement that can be shared in a support group. A burden shared is that much lighter. I am willing to listen and to offer, as they say in 12-Step groups, “experience, strength, and hope.” I also understand that people facing a terminal cancer diagnosis are grieving, and they need to process that grief. I want to be compassionate and supportive. I want to be loving and nonjudgmental. And of course it’s sad when someone dies. It’s perfectly natural to rage against cruel fate, and to lament.

I hate to say this, though, but I’m getting fed up with it. I recently attended a conference about metastatic breast cancer. It was a good conference, and I’m glad I went. But at one point they were talking about anger (about our diagnosis and reduced life expectancy), and I wrote in my notes, “Is there something wrong with me?” I am not angry that I have cancer. I don’t feel cheated. I don’t resent it. Shit happens. I am not some special snowflake who deserves to get through life unscathed. I don’t know of any such person.

Nobody gets out alive, and no one is guaranteed a certain number of years of life. Furthermore, as citizens of the US, we live in a bubble of privilege and safety. The US certainly has its issues, especially when it comes to healthcare. But we have health insurance. We have disability income because of our diagnosis. We expect safe consumer products, safe roads, safe streets, safe water, clean air, and I’m pretty sure everyone at that conference has all those things. I got a grant from that conference–the trip was essentially free. I’ve been living with this disease for six years, and I’m still doing well. I am better off than over 99% of the people in the world. I am incredibly lucky and blessed.

Yes, it sucks that 40,000 people die from breast cancer every year in the US. That’s not a good thing at all. And I don’t want to get into comparative suffering arguments about this, but it seems incredibly selfish and tone deaf to focus on that to the exclusion of every other kind of misfortune, untimely death, and suffering in the world. I think of all the children who die of infectious diseases, or starvation, or dysentery from lack of clean drinking water or proper sanitation. I think of their grieving parents. I think of child brides who give birth too young and suffer fistulas and all the shame and anguish that goes with that. I think of children sold as sex slaves or forced to be child soldiers. I think of cancer patients in other parts of the world who don’t even have medication for pain as they lay dying. I think of the devastation of HIV/AIDS, of war, of famine, and “natural disasters,” many of them caused or made worse by the lifestyles of people who live in countries like ours.

When I try to decide where to put my time and energy, I think about how I can do the most good with my limited resources. Solving cancer is certainly a worthy goal, but as another speaker at the conference emphasized, the problem is far too large for individual or small-group efforts. The money to tackle that has to come from all of us acting jointly. We need to fund the NIH and the NCI generously, and make sure researchers have the resources they need to do basic science. We need to quit thinking “government is the problem” and go back to seeing government as a way (in some cases the only way) to “promote the general welfare.”

In the US we keep being told we can’t have nice things, while 50% of the discretionary federal budget goes to warmaking. We spend $1 trillion per year on “defense.” The US is the largest purveyor of weapons of mass destruction in the world. I find it hard to feel much outrage over domestic cancer deaths, frankly, when I see how many people have been killed, harmed, or driven from their homes by my government’s endless wars of choice.

I don’t think my life matters more than anyone else’s. If there were some way to divert the funds that go into keeping me alive (and it’s a huge number) to providing food, clothing, shelter, health care, education, and peace for other people, as God is my witness I would do it in a heartbeat. But I can’t do that, so I have to figure out some other way to justify my privilege, and to use the gifts I have to make the world a better place.

“I am cognizant of the interrelatedness of all communities and states. . . . Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” Martin Luther King, Jr. Letter from a Birmingham Jail.

Do keep loving the people in your immediate circle. Do mourn the loss of those you love, especially those who die before their time. Do weep for the ones they leave behind. But for God’s sake look beyond that immediate circle. Stage IV cancer is incurable right now. But there’s a whole lot of suffering, misery, and death that is being caused by policies and decisions that were by no means inevitable. War is a choice. Poverty is a choice. Depriving millions of people of health care and the other necessities of life in “the richest country in the world” is a choice. Other choices were possible. And they still are. Raise your eyes. Raise your voice. Do something.

 

 

 

posted by Amy on May 13

Two years ago I posted this on Facebook:

I don’t have any pictures of just me and my mom, partly because I was her second child, and partly because she was the family photographer.

My mother was beautiful, intelligent, creative, funny, talented, and driven. Unfortunately, she was born a generation or more too early to get effective help for her troubled and volatile mind, nor did people talk much in those days about gentler, more loving and peaceful ways to raise children. She often wrestled with overwhelming rage, and took it out on her kids, especially me and my older brother. The realization that alcoholism is a disorder that affects the whole family and needs to be addressed as a system of interlocking behaviors also came too late to help her–and us–and especially my dad. In those days, people kept addiction and mental illness secret, and dealt with it as best they could in isolation.

On the other hand, my mother also went to extraordinary lengths to help us kids with our activities and projects–Den Mother, Room Mother, typist, facilitator, creator of unique and fantastic Halloween costumes. She loved celebrations and road trips. I get my love of museums and festivals from her. She had all kinds of practical knowledge, much of which she passed on to me, along with a can-do attitude. She told me I could be whatever I wanted to be when I grew up, and encouraged me to get an education. Everyone loved her spontaneity and sense of adventure, and I inherited some measure of that same gutsy, proto-feminist spirit.

As I look back I realize that there have always been wise, strong, loving women in my life who reinforced the places in my psyche that needed shoring up and who showed me there were alternatives to the way things were at home. Parents aren’t the source of our Love, just one expression of it. I have been blessed with grandmothers, aunts, teachers, Girl Scout leaders, and friends of all ages who have provided the positive regard, wisdom, and loving kindness that I needed.

Even small, infrequent doses of sanity and encouragement can make a huge difference in how a child’s life unfolds. To repeat what a wise Facebook friend put in her post just now, “Happy Mother’s Day to all women who love, protect, teach, or care for children big or small.” Blessings and love to all mothers, with all their faults and frailties, and to all the “other-mothers.”

All of that was true, and it still is, but it isn’t the whole truth. I made it sound easy, maybe even automatic. I downplayed the negatives in that Facebook post because I wanted to offer encouragement and hope to others, and consolation to people who had complicated (or bad) relationships with their own mothers.

The rest of the story is that my childhood environment was highly detrimental to my mental and physical health. I experienced what is now being called “complex developmental trauma.” Its effects can be muted, but not completely overcome. My mother was quite narcissistic, and she was abusive. All the “good mom” stuff she did was for public consumption. It was helpful, and it was a good model for me when I became a mother. It was especially good to have the guts to tackle some big project at the last minute and pull it off. That’s a valuable life skill for almost everyone. But behind closed doors she was a monster. You don’t need to know the details.

All her life my sister put our mother’s face on me. She feared and loathed me. She also loved me, or wanted to love me. The burden of being a screen for her projections of the mean mom inside her head could be unbearably heavy to bear. I learned not to take it personally, and to calibrate my expectations of her to (mostly) avoid being hurt. But I may never get over my sadness that we couldn’t enjoy being together and were never friends.

There’s a very good chance the trauma I experienced caused epigenetic changes that I unwittingly passed on to my children in their DNA. Past traumas haunt our family like ghosts. It also influenced my choices of marriage partners, and my ability to parent. I honestly believe I have healed to a great extent, and I think my children had a happier childhood than I did and are healthier than I was. But the scars will never go away. We can work around them, but they’ll always be there.

Nevertheless, I stand behind the motivation for the Facebook post. People can change. People can learn better ways of being with one another. One major reason I am as functional as I am is the “other mothers” I talked about in the Facebook post. You can be an “enlightened witness” for an abused child. You can be a beacon of sanity, love, joy, and beauty, whether the child is related to you or not, and whether you get much of a chance to be with the child or not. Just let your light–the light of  God/dess, who is Love, shine forth. Be a model of good self-care. Be a  model of faith, hope, compassion, and love every chance you get.

Happy Mothers’ Day.

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