Caregiving and the fight-flight-freeze response

Judy Long
Judy Long

Fight, flight or freeze. Those are the three traditional options we humans have when confronted with dangerous or overwhelming situations. Judy Long suggests a fourth: challenge. For caregivers whose stress levels often keep them on a high-fight-or-flight alert, this new option can come as good news.

Long spoke recently on Caregiver Resilience and Well-Being: Sustainable Caregiving at a meeting in San Francisco. “The ‘challenge’ response,” she told members of the San Francisco Bay Area Network for End of Life Care, “can actually have biological benefits. When you can look at (your stress) as excitement you can actually perform better.”

Judy Long, who is currently Palliative Care Chaplain in the Department of Neuropathy at the University of California San Francisco, has an extensive list of credentials in things like Mindfulness-Based Stress Reduction and Mindful Self-Compassion – the academics underlying today’s insights into the caregiving business. And for those in the trenches of caregiving, small suggestions can offer big help.

“Sustainable caregiving,” Long says, involves “all of the things we do for ourselves when we’re involved with caregiving. I know how exhausting it can be. But we can all be doing things that have great meaning, that are nurturing and nourishing for ourselves.”

Long tells of completing her chaplaincy training, which included a year of training at the University of California San Francisco. One year later, she says, she was asked to take on a six-month chaplaincy at UCSF – assigned to the neonatal intensive care unit, commonly referred to as NICU. “I wondered how to keep myself centered in all that terrible suffering.” The patients in NICU are mostly premature or very sick hands-with-heartsinfants, lying in “isolettes.” While extraordinary progress has been made, and continues to be made, with successful treatments, having a newborn in NICU is stressful for parents, and many infants die. It falls to the chaplain, much of the time, to tell a parent his or her baby will not survive, or will have permanent damage. “I found out I was okay with that,” Long says, partly for having had some time in between training and actual chaplaincy work in a difficult setting.

“I’m a pragmatist,” Long says; “I always ask what works.” She was determined not to fall into the trap of many caregivers: “overwhelm, shutting myself off from caring by building an armor. Caregiving also points back to ourselves.”

Long credits one of her teachers and mentors, Roshi Joan Halifax of the Upaya Zen Center in Santa Fe, NM, with offering guidelines she uses to guard against the common pitfalls of isolation – “there are a lot of opportunities to be isolated while trying to do good” – and the sense of helplessness. “I call them my three points: purpose, connection and control.”

Long’s audience at the recent meeting included many who have chosen, as Long herself has, a career path in the caregiving field. It also included three older women, among whom is this writer, who are fulltime caregivers for their husbands: one with peripheral neuropathy, one with both cancer and progressive memory loss and one with Parkinson’s disease. For the family caregiver, purpose and connection are clear. But control? An elusive element at best.

Which brings us back to the fight-flight-freeze business. Challenge may still be an option.

 

Willie Parker vs Reproductive Oppression

Dr. Willie Parker
Dr. Willie Parker

“The Racialization of Abortion,” Willie Parker titled his talk; “A Dirty Jedi Mind Trick.” He then spent about 45 lively, provocative minutes elaborating on the theme.

The occasion was a recent Grand Rounds presentation at the University of California, San Francisco School of Medicine, where he addressed a standing-room-only crowd of (mostly) young interns for an event that more commonly draws a smattering of attendees. But when Willie Parker comes to town, it’s a good idea to bring in extra chairs. Parker is an African American physician, a provider of abortion and reproductive health services to women who would otherwise be denied them, current board chair of Physicians for Reproductive Health, a ferocious defender of women’s rights and fearless citizen. He is also this writer’s personal hero.

Parker explained in his opening remarks that his “is heart work and head work. Dr. Martin Luther King said the heart can’t be right if the head is wrong. (King) also said we have guided missiles and misguided people.” On the podium, delivering a rapid-fire lecture in behalf of reproductive justice, Parker is akin to a guided missile consisting of equal parts passion, outrage and statistics. The youngest of six children whose mother sent them to church three times a week, he speaks with the cadence and conviction born of those roots.

“There are over six million pregnancies per year in the U.S.,” he says. “Half of them are unintended. Of the unintended pregnancies, half end in births; half in abortions. One in three women under 45 will have an abortion. While unintended pregnancies have fallen among the upper classes, they have increased 29% among the poor. Blacks and Latinos are disproportionately likely to have unintended pregnancies…”

And it is at this point that Parker’s inner preacher takes over. “People,” he says, “we’re gonna get ugly for Jesus.” It is his challenge to those who attack him, most often fundamentalist Christians, for protecting the reproductive rights of his mostly young, Black clients. Often they also accuse him of participating in “Black genocide.” It is this myth — that abortion is a government plot to eradicate the Black race – that leads to the Dirty Jedi Mind Trick theme.

“It is epidemiological mischief,” he explains. “They take data, put a spin on it that is not intended, and then start a ‘call-and-response’: You have white people saying abortion is racist, getting Black people to say Amen. They can put a cultural war in your framework. It’s important that we recognize the significance of this message, and debunk it.”

In addition to the epidemiological mischief there are outright lies. Former presidential candidate Herman Cain, an African American Tea Party Republican, said in one speech that 75% of abortion clinics were in Black neighborhoods, to encourage African American women not to have children. Parker says the correct figure, according to the Guttmacher Institute, is 9%.

“At its core,” Parker says of these efforts, “it is patriarchal and insulting. They assume a woman is not capable of making her own decisions about her own body.”

What’s needed now, to combat all this, Parker says, “is a new framework, to define this community problem as Reproductive Oppressionon. Reproductive oppression is the control and exploitation of women and girls and individuals through our bodies.” Parker cites the long history of reproductive oppression that includes “forced breeding during slavery, sterilizations, and human experimentation on Puerto Rican women for the contraceptive pill.

“Current examples of reproductive oppression,” he says, “include limiting access to reproductive healthcare, family caps in welfare, and federal and state laws restricting access to abortion.”

But there is hope. Parker cites Atlanta-based SisterSong and its formidable co-founder Loretta Ross as embodying the principals of reproductive justice. Parker lists these as:

1 – Every woman has the right to decide when to have children.

2 – Every woman has the right to decide if she will not have a child.

3 – Women and families (deserve) the resources to parent the children they already have.

4 – Every human being has the right to primary sexual pleasure.

Anti-abortion forces would certainly argue against at least the first two. Parker’s message to the young interns was that it’s not just argument, but twisted myths and dirty tricks that are being used to deny those rights. He maintains it’s the responsibility of the medical community, among others, to stand up for women who are suffering from being denied, to fight against reproductive oppression.

In all likelihood, Willie Parker will keep right on leading that battle.

  *   *   *   *

(Read Dr. Parker’s statement on the recent Supreme Court ruling against restrictive Texas abortion laws: http://prh.org/)

 

There’s Hope for Reproductive Justice

Art by Megan Smith
Art by Megan Smith

Let’s hear it – one more time – for the Millennials. Especially the youngest Millennials, just now reaching or approaching voting age. A generation unto themselves.

Invited to speak at a recent “Awareness into Action” day at Drew School, a private college preparatory day school in San Francisco, this writer went with some trepidation into a classroom set up for about ten high school students. Who – when she hasn’t been a high schooler in more than a half century – knows high school students today?

My workshop was on Reproductive Justice. Other choices the students could make included workshops on Mindfulness, Parks Conservancy, Anti-Racist Dialogue, LGBTQ issues and Immigration Law (to name a few.) I figured if 5 or 6 girls showed up it would be fine. By the time we were ready to start there were 14 girls and two brave (and handsome) guys around the table and sitting on chairs and tables in the back corner, plus one teacher keeping an eye on it all.

For openers, I’d written several facts on the whiteboard:

A woman dies of cervical cancer almost once every two hours. HPV vaccine prevents most cases of cervical cancer.

17 states mandate that women be given counseling before an abortion that includes information on at least one of the following: the purported link between abortion and breast cancer (5 states); the ability of a fetus to feel pain (12 states); long-term mental health consequences of abortion for the woman (7 states.) None of the above are true.

Then I told my own story. The story of a 22-year-old who had never had sex – after all, nice girls did not have sex before marriage in 1956. A victim of what would today clearly be workplace rape, I did all the dangerous things that women desperate to end an unwanted pregnancy are increasingly doing today. When nothing else worked, I had a back alley abortion by an untrained man who probably had not even washed his hands.

“I think,” I said to the roomful of attentive faces, “we’re going straight back to the dark ages.”

Not if these young people have anything to say about it.

Aware that they are among the lucky ones, they are concerned about the unlucky. They seemed a little taken aback by statistics like this one:

In 2006, 49% of pregnancies were unintended. The proportion of unintended pregnancies was highest (98%) among teens younger than 15.

. . . and by other data about how widespread is the denial of access to reproductive healthcare for poor women and girls (and men and boys) in more than half of the U.S. “It’s just wrong,” said one student.

So what do you think you can do to change things, I asked.

“Vote,” came the first answer, before I even finished the question.

“We have to learn to listen to people we disagree with,” said another student, who had been rather vocal in her description of political villains. “You may have to bite your tongue,” I said. “Yeah, I know,” she replied. “Because we have to learn how to have dialogue.”

“We just have to know the laws,” said another, “and work to change them.”

“We need to support these organizations, too,” commented another student, tapping the table with some of the materials I had distributed from groups like Advocates for Youth, Planned Parenthood and Sea Change.

For this writer, who lived through the worst of times, the workshop brought hope for the future of reproductive justice in the U.S. Returning to the worst of times is not on the agenda for these Millennials.

 

 

Looking Globally at Death – & Life

Buda-conf.5In Japan the shift from Buddhism to secularism is complicating life and death. Ireland has launched a nationwide effort to encourage end-of-life planning. A Celtic Storyteller now based in Canada draws on her training as a nurse in helping people through illness and grieving. And at the University for the Creative Arts in Farnham, UK, one researcher/textile artist explores the intricate usefulness of cloth in the mourning process.

These were a few of the insights into end-of-life issues around the world shared at a recent Inter-Disciplinary.Net global conference in Budapest, Care, Loss and the End of Life. The conference provided a perfect excuse – once the abstract for my own paper was accepted – for this writer to take off several weeks for a memorable trip to Paris, Cologne and (eventually!) Budapest. The latter two ancient and wonder-filled cities I had never visited. More on travels later. This essay is a severely abbreviated commentary on a remarkable event, and explanation of the absence of any other commentary in this space over recent weeks. (The digital world does seem to have kept right on turning without my assistance.)

Inter-Disciplinary.Net was founded in the late 1990s by Dr. Rob Fisher, who gave up a tenured position at Oxford (not something many people would be inclined to do) to devote his entire and considerable energies to bolstering the “interaction of ideas, research and points of view that bear on a wide range of issues of concern and interest in the contemporary world.” The recent conference was the second global Inter-Disciplinary.Net event this writer has been privileged to attend, and they seem just to get better. As with more than a decade of conferences on end-of-life (and several other) issues, Care, Loss & the End of Life was organized and run by Nate Hinerman, PhD, Dean of Undergraduate Programs at Golden Gate University in San Francisco.  The following brief glimpses into end-of-life matters in other countries are summarized from three out of nearly two dozen presentations.

ancestor altar

Tomofumi Oka of Sophia University in Tokyo spoke on “Making Peace with Grief Through Indigenous Wisdom: A Case Study of Japanese Family Survivors of Suicide.” Oka illustrated his presentation with clips from Japanese films (thankfully with English subtitles) showing several Buddhist altars to departed relatives. The tradition of ancestor worship that has for generations been part of Japanese culture, Oka maintains, was helpful both in confronting death and in dealing with grief. As the country has become increasingly secular, though, the business of helping survivors through the grieving process has been turned over to nonprofits that are largely funded by the government – and Oka is dismissive of their usefulness. “You join a group of other survivors, talk about your loved ones for a while until you are ‘graduated’ into another course in which you’re supposed to get on with your life,” he told me. “The nonprofits don’t know what they’re doing, and the system just doesn’t work.” Japanese Buddhists seem to have it better.

One of the most moving presentations was titled “The Materialisation of Loss in Cloth,” given by Beverly Ayling-Smith. An award-winning textile artist and researcher, Ayling-Smith illustrated her presentation with images of burial cloths and related textiles, including some elegantly ethereal images of shrouds. “Cloth has its own language as curator Julia Curtis has written,” she comments, “‘. . . fold, drape, stretch, stain and tear – it signifies an emotional range from intimacy, comfort and protection, to more disquieting states of restriction fragility, loss and impermanence.’ It is this range that allows cloth to be used as a holder of memories of events, experiences and people.”

This storyteller bonded early in the conference with Celtic Storyteller Mary Gavan, whose mastery of the oral form is both challenge and inspiration to a practitioner of the written form. Gavan grew up “as a Celtic storyteller tramp,” delighting in the ancient tradition as she heard it from grandparents and friends across Scotland and Ireland. Her presentation was told as story from her two personal perspectives: community palliative care nurse and Celtic Storyteller. It served as a vivid demonstration of how effective the well-told story can be in communicating and understanding the complex emotions brought to bear at the end of life.

Buda-conf.3

There were many more: perspectives on loss and grief offered by participants from Turkey, Spain, Norway, Slovakia and elsewhere, and one mesmerizing – if not for the squeamish – illustrated discussion of an anonymous 15th century Middle English debate, “A Disputation Between the Body and the Worms.” On that latter, presenter Martin Blum of the University of British Columbia Okanagan read the ancient text “not only as a contemplation of the transitory nature of life, but also as an affirmation of life.”

Which was, in effect, what this conference managed to achieve: pulling together diverse global perspectives on death to create a giant affirmation of life.

 

 

 

To Have (or maybe not) a Stroke

Heart attack

“You’re not leaving here with your blood pressure that high,” the doctor said. It was 189 over something equally ridiculous. It was not interested in coming down. Finally she said, “Okay, pick up this prescription on your way out and take it the minute you get home.”

Vividly running through my head were images of my mother, who suffered a series of strokes that eventually killed her in her 70th year. Plus images of assorted aunts and others who suffered debilitating strokes and often early deaths.

“But . . . but,” I said to the doctor, as I have repeatedly said since my carefree youth; “I don’t have high blood pressure. My three older sisters? They all had high blood pressure. They also all had beautiful auburn curls, while I got the utterly straight, dishwater blond hair. So, shortly into our adulthood, I took to saying, ‘OK, keep your gorgeous curly hair, I’ve got the good blood pressure.’ It seemed like a pretty fair trade.” My physician said, not unsympathetically, “Those genes may have caught up with you.” And just like that, I joined the ranks of the hypertensive. That great mass of humanity waiting apprehensively for the stroke or heart attack that might swoop in and end it all.

By the time I got home I was visualizing an immediate demise.

Unlike my mother’s generation, though, today’s hypertensives have internet encyclopedias worth of information and an arsenal of drugs bewildering enough to induce a small stroke if you really try to figure them all out. Beta blockers. Diuretics. Angiotensin II receptor blockers. Vasodilators. A good doctor, whose advice you can follow, at least on which meds to take, is a great boon. french fries

The rest of the try-not-to-have-a-stroke business is fairly straightforward. Quit with the nicotine, and moderate the booze (or quit that too.) Watch the weight – extra poundage, especially around the midsection, can increase your stroke probability rather dramatically. Walk for at least 30 minutes a day, increasing the distance as you can. (Swim, bike, exercise.) Salt can do you in fast; if you’re trying to stay within the recommended 1,000 to 2,000 mg per day, a large order of fries (350 mg) might not be a wise choice.

This writer is good with most of the above – excepting an occasional uncontrollable urge for a small order of fries. Plus whatever that was I picked up from the Kaiser pharmacy definitely worked. One tiny little pill, and the next day my blood pressure was 114 over 85.

Maybe I’ll stick around for a while.

Women, Abortion Rights & Willie Parker

Dr. Willie Parker
Dr. Willie Parker

Noted physician/activist Willie Parker was in San Francisco recently explaining why he does what he does.

What Willie Parker does is regularly put his life on the line in behalf of poor women and their reproductive health. Why does he do it? “It’s the right thing to do.” Among other things Parker does is to fly regularly into Jackson, MS to provide abortions at the one remaining clinic where Mississippi women without power or resources can go for this constitutionally-protected health service.

His belief that it would be morally wrong not to help the women who come to him, Parker once told this writer, was rooted partially in a sermon Martin Luther King, Jr. preached on the good Samaritan (who stopped to help a stranger after others had passed him by.) “What made the good Samaritan ‘good’ was that instead of thinking about what might happen if he stopped to help the traveler, he thought about what would happen to the traveler if he didn’t stop. I couldn’t stop to weigh the life of a pre-viable or a lethally flawed fetus against the life of the woman sitting across from me.”

Parker headlined an event celebrating the 43rd anniversary of Roe v Wade that was organized by Carol Joffe, PhD, of the University of California San Francisco’s Bixby Center for Global Reproductive Health – and which quickly sold out.

“Most (abortion) providers keep a low profile,” Joffe said in her introductory remarks; “but Willie has chosen to be very public. (Despite his multiple degrees and honors, everybody seems to call Dr. Parker ‘Willie.’) He is building bridges to the past and to the future.” Joffe went on to speak of Parker’s connections to progressive causes, faith communities and, most recently to the Black Lives Matter movement. “What he is doing,” she said, “helps all women to live lives of dignity.”

Parker, who treats the issue of personal danger as not worth his time to worry about, calls the anti-abortion efforts “domestic terrorism,” especially with the murder of providers. The incessant efforts to overturn Roe, and passage of more and more unnecessary state laws making abortion inaccessible for women without power or resources are, he maintains, in the same “domestic terrorism” category.

The author with the doctor
The author with the doctor

So in return Parker says he tries to “radicalize” every young woman he sees in Mississippi. Since the state mandates he spend time with her, unnecessarily and repeatedly, before allowing her to have the abortion which is her constitutional right, Parker considers it only fair to put that time to best use. “I tell her, ‘these people who are trying to close this clinic – they don’t think you’re smart enough to make your own decisions.’ And I explain change will only happen if she fights for it. Then I tell her to go vote.”

All of which helps explain why Willie Parker does what he does. This writer is among the uncounted others, women and men believing in humanity and justice, who give thanks.

 

 

Dying On Your Own Terms

Mileva Lewis with the author
Mileva Lewis with the author

Do Not Resuscitate? Allow Natural Death? Do everything to keep me alive? Whatever happens, I don’t want tubes down my throat! Keep me out of Intensive Care Units!

End-of-life decision-making gets tougher every day.

Dying – that straightforward, universal human experience – now often involves a bewildering assortment of choices and decisions. And most of us are poorly prepared. We have core values (and usually more than a few fears and family histories) that come into play in making end-of –life choices, but too many of us are caught unawares.

At a recent Commonwealth Club of California event Mileva Saulo Lewis, EdD, RN, used a “values history” approach to explain how these difficult decisions are made, and to help audience members walk through the process. “Values history” translates: What matters to you? Why? It was developed at the Center for Medical Ethics and Mediation in San Diego.

“Values,” Lewis explains, “are the criteria by which you make decisions.” They might be rooted in your home and family, your faith community, college or university, workplace or elsewhere, but one’s values underlie all decision-making. And the reason all this matters today, especially with end-of-life decisions, is that medicine and technology have made seismic shifts over the past half century.

Lewis spoke of how the patient/physician relationship, one of these shifts, has moved from the paternalistic, “father knows best” model to what is now often termed “patient-centered” care – shared decision-making. This new model requires patients not only to be well informed, but also to be proactive and to make their values known.

The goals of medicine, Lewis explains, include curing disease, relieving symptoms and suffering, and preventing untimely death. The patient’s part is to make sure the healthcare provider explains and counsels adequately, and respects the patient’s expressed wishes. Ideally, decisions will be made in concert.

Lewis outlined some of the factors to consider in end-of-life decision-making such as how important to you is independence, being able to communicate with others, being pain-free and other end-of-life circumstances that have been frequently discussed in this space. She suggested one tool that has not been mentioned here, and is an excellent aid: the Ottawa Personal Decision Guide. However you make (and record) your personal choices, she stresses the importance of thinking through your values, writing down your wishes and – most important of all – talking it all over with friends, family members and your healthcare provider.

“Know yourself,” Mileva Lewis says. “Communicate. Trust yourself, and your healthcare provider. And be proactive.”

Heeding Lewis’ advice can help protect your values, and insure that your end-of-life wishes are respected.