I’m not cured, but I am healing

Donna Jackson Nakazawa

Donna Jackson Nakazawa

More than 133 million American adults — one in two of us — suffer from a chronic condition, including autoimmune disease, fibromyalgia, digestive disorders, migraines, back pain, depression, diabetes, cancer and chronic pain. A recent study published in JAMA Internal Medicine found that those of us in our 40s, 50s and 60s are twice as likely as our parents were to suffer from debilitating chronic conditions in middle age.

I’m one of those statistics. I’ve spent much of the past decade navigating my life around health crises. Twice I’ve been paralyzed by Guillain-Barre Syndrome, an autoimmune disease similar to multiple sclerosis, but with a more sudden onset and a wider array of possible outcomes. Other diagnoses — low blood cell counts, thyroiditis and the need for a pacemaker — have also complicated my health and my life.

When my kids were younger I coped with bouts of being bedridden by turning my bed into a playground, scattered with board games, Legos and books like A Wrinkle in Time and The Lord of the Rings. One day, my son’s grade school teacher sent home a paper in which she’d circled a line he’d written: “My Mom is the most determined person I know. She’s more determined than Frodo.”

Above all I longed for a normal, ordinary life, that lovely, irreplaceable, gorgeous mess of moment-to-moment reality — to play hide-and-seek with my kids again, to bandage and kiss a skinned knee while rushing to get out the door to a meeting.

I was sure that if I could walk again, tie my kids’ shoes, drive, cook dinner and type, the joy of living would return in high definition. If I could just get back to ordinary life, it would be miracle enough.

But I was wrong. Even after I’d regained the strength to haul myself up the steps — albeit by death-gripping the rail — and drive, cook and write, I was different. Yes, I was profoundly grateful, but it still felt like a half-life. A maybe life.

One day I found myself lying down at the top of the stairs, exhausted by carrying up the laundry basket. That’s when it hit me: These should be the best years of my life. My time to enjoy my kids, who would all too soon be gone. My most productive work years. But the days were whizzing past.

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Illness, I realized, had become my joy thief.

As a health science journalist, I’d written an award-winning book, The Autoimmune Epidemic, on how modern chemicals were overwhelming the human immune system, contributing to rising disease rates. I’d been working with the chronically ill for years, lecturing to groups and exchanging thousands of emails with patients. I knew how many Americans were suffering, despite having benefitted from the best that Western medicine had to offer.

Like me, their lives had been saved, but they felt robbed of joy. Continue reading

Five-minute video primer about Adverse Childhood Experiences Study

Many people have been asking for a short video that explains the CDC-Kaiser Permanente Adverse Childhood Experiences Study, the groundbreaking epidemiological research that revealed the link between childhood trauma and the adult onset of chronic disease, mental illness, violence and being a victim of violence.

KPJR Films, which came out with Paper Tigers last year and Resilience this year, put together this wonderful five-minute overview of the ACE Study. It was edited by Jen Bradwell.

KPJR Films’ executive producer is Karen Pritzker. Its director-producer is James Redford.

“Resilience” premieres at Sundance Film Festival to sold-out houses

(l to r) Dr. Nadine Burke Harris, who appears in Resilience; Robert Redford, father of Resilience director James Redford; Clifford Beers Guidance Clinic site coordinator Laura Lawrence, who appears in Resilience; Resilience producer and director James Redford; Resilience co-producer Dana Schwartz

(l to r) Dr. Nadine Burke Harris, who appears in Resilience; Robert Redford, father of Resilience director James Redford; Clifford Beers Guidance Clinic site coordinator Laura Lawrence, who appears in Resilience; Resilience producer and director James Redford; Resilience co-producer Dana Schwartz

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Resilience, a documentary that looks at the birth of the CDC-Kaiser Permanente Adverse Childhood Experiences (ACE) Study and how it spawned a movement across the world, premiered at the Sundance Film Festival on Friday. The first two screenings — both on Friday — were sold out.

Not bad for a film whose director, James Redford, wasn’t even planning on submitting it to the festival.

The buzz started before the festival even began. Wired.com listed Resilience as No. 2 in the 25 documentaries not to miss. WhatNotToDoc.com also singled it out. Nonfictionfilm.com did a story about the documentary.

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Keeping trauma-informed teachers in Oakland, CA, schools

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Dr. Joyce Dorado, director of UCSF’s HEARTS program

 

by Shane Downing at ChronicleOfSocialChange.org

Last New Year’s Day, when 13-year-old Lee Weathersby III was shot and died in Oakland, CA, nearly 200 of his middle school peers and teachers received therapy.

In the Oakland Unified School District, Sandra Simmons’ job is to help coordinate that therapy on school campuses. As a behavioral health program manager for the district, Simmons oversees crisis response across the district. She has organized behavioral health training and counseling for students, teachers, staff, and administrators for the past five years.

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“Resilience” an official selection of Sundance Film Festival

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He wasn’t even planning on submitting Resilience to the prestigious Sundance Film Festival, says James Redford, whose production of Paper Tigers has been screening to sold-out audiences around the U.S. this year.

But late this summer, he shuffled some papers aside on his desk, and there was the application. It was due the next day. What the heck, he thought. I’ll submit it, as I have every other film I’ve made, but I won’t tell anyone. Why get people’s hopes up…again?

Two weeks ago, he was astonished to hear that Resilience was chosen to be an official selection. This gives the documentary great visibility and considerable boost for further distribution. It also brings information about the CDC-Kaiser Permanente ACE Study, its import and how it’s being used to another large and influential group of people.

Resilience: The Biology of Stress and the Science of Hope looks at the birth of the CDC-Kaiser Permanente ACE Study and how it’s spawned a movement across the U.S. It focuses on the work of pediatricians, therapists, educators and communities. It features interviews with several leaders in the ACEs movement nationally and in communities, including Laura Lawrence and Laura Porter, and Drs. Robert Anda, Vincent Felitti, Nadine Burke Harris, Victor Carrion, Jack Shonkoff and David Johnson.

Dr. Nadine Burke Harris and a patient.

Dr. Nadine Burke Harris and a patient.

The ACE Study measured 10 types of childhood adversity, those that occurred before the age of 18. They are physical, verbal and sexual abuse; physical and emotional neglect; a family member with mental illness, or

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Esta Soler elevates child trauma to national policy stage

Esta Soler, CEO of Futures Without Violence

Esta Soler, CEO of Futures Without Violence

By Jeremy Loudenback, ChronicleOfSocialChange.org

As the sounds of an abusive husband interrogating his partner intensify off-screen, a camera pans up a flight of stairs.

A young boy, maybe 3, sits in knitted pajamas at the top of the staircase, cradling a plastic yellow truck. He listens intently as the sickening cacophony grows, while his parents’ shadows dance off the walls.

Screams and shouts turn to tears and pleading before the sharp crack of a blow reverberates throughout the house.

Though we never the see the punch, the impact is clear. The boy drops the toy truck, and the camera follows the boy’s stunned and searching face as the screen goes black.

This 30-second “There’s No Excuse for Domestic Violence” ad first ran in the summer of 1994, part of the first national public service campaign aimed at preventing domestic violence.

For longtime domestic violence advocate Esta Soler, the ad that her organization helped produce represents both a historic achievement in the drive to halt domestic violence and a trenchant reminder of the current struggle to recognize and prevent child trauma.

“That little kid on the stairs tells that story really clearly,” Soler said in a recent interview with The Chronicle of Social Change. “We’ve actually been talking about child trauma and exposure to violence in the home going back to the very beginning of when we started to do this work.”

In 1994, when the arrest of footballer and screen celebrity OJ Simpson drew unprecedented attention toward violence against women, Soler sat ready, armed with well-produced television ads and the stories of victims of domestic violence that would enter the zeitgeist at just the right moment to drive sweeping policy reform.

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Who helps our helpers? Vic Compher’s “Portraits of Professional Caregivers” documents their passion, pain

ACompher2Vic Compher, director and co-producer of Portraits of Professional Caregivers: Their Passion. Their Pain,” didn’t start out as a filmmaker. This documentary — his fourth — was inspired by his 20 years working in child protective services, and another 10 years working in hospice and clinical social work with older adults.

During that decade, he learned that many professional caregivers who work with traumatized people experience secondary trauma  — also known as compassion fatigue or vicarious trauma. This includes firefighters, emergency medical crews, ER nurses, doctors, police, and others.

The first part of the documentary — which was co-produced by  Rodney Whittenberg, who teaches filmmaking, and who also composed the music for this film — focuses on secondary trauma, or what caregivers experience when they respond to and care for people experiencing trauma.

“Secondary trauma, or compassion fatigue, is one more layer of the trauma experience,” says Compher, “a parallel process for many professional caregivers with symptoms that at times can somewhat resemble what their clients may be experiencing.

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