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

A memoir about surviving ACEs

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I became a professional reader long before I was a writer when I was living in homeless shelters, subsidized housing, and welfare hotels with my mother in New York City.

Most of the middle class and affluent black folks I would come to know in the future would wince and give me a look I couldn’t read when I would tell the story that I outline in my new memoir, The Beautiful Darkness: A Handbook for Orphans. All some intolerant, ignorant bigots need is to continue to hear about the dysfunction of black families or the lie that we are all poor (living in inner cities) and broken and hopeless. But unfortunately, in my case, the dysfunction was just part of what I lived through as a kid.

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Racing ACEs gathering and reflection: If it’s not racially just, it’s not trauma-informed

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The following memo was written by a group of people who participated in the Racing ACEs gathering. 

It’s 2016. Local and national protests rise against an ongoing stream of state-sanctioned murders. African-American lives are being lost at a frequency and in a manner that decry ethnic cleansing. Sacred Indigenous land is being desecrated for profit. African-American, Native American, Latino American, Asian American, and poor communities are facing dislocation, police violence, and a range of traumas that compose the frayed ends of America’s historically racist national fabric.

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Juvenile transfers to adult court: A lingering outcome of the super-predator craze

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By John Kelly, ChronicleofSocialChange.org

Twenty years ago, in a speech at Keene State College in New Hampshire, then-First Lady Hillary Clinton made a comment about juvenile crime. Discussing the need for a top-level fight against gangs that harkened the mob-busting of previous decades, Clinton told reporters that “they are not just gangs of kids anymore.”

“They are often the kinds of kids that are called ‘super-predators,’ ” Clinton continued. “No conscience, no empathy; we can talk about why they ended up that way, but first we have to bring them to heel.”

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Kids and drugs: A new theory

By Karen Savage
NEW YORK — Author and reporter Maia Szalavitz, who writes about substance use and related issues recently spoke with Youth Today and JJIE about her experience and her newest book: “Unbroken Brain: A Revolutionary New Way of Understanding Addiction,” released in April. Here’s Szalavitz’s take on addiction and its complexities, from her own experience and in her own words.

A sin or a learning disorder?

There’s traditionally been two ways of seeing addiction. Either it’s a sin and you’re a horrible bad person and you are just choosing to be a hedonist, or it’s a chronic progressive disease. While I certainly believe addiction is a medical problem that should be dealt with by the health system, the way we’ve conceptualized addiction as a disease is not actually accurate. Continue reading

Best-selling memoir “Hillbilly Elegy” tells an inspiring story of overcoming ACEs

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In search of insight into the country’s stark cultural divides in preparation for a week of potentially difficult conversations in Kentucky where I’d be attending family reunion and 50-year high school reunion, I dove into “Hillbilly Elegy: A Memoir of a Family and Culture in Crisis” by J.D. Vance. Throughout this mesmerizing, painful, and hilarious memoir, I kept wondering if the author might know about the ACE Study. The answer was found on page 226 when “ACEs” jumps out at me and continues for several pages. I leapt from the living room sofa and darted to the kitchen to tell my fiancé Bill about it—and practically jump for joy.

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Assisting refugees: Lessons on trauma and resilience

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Lao wedding in the U.S.

Making do with what you’ve got

 There are a lot of stories about refugees in the news. Some years ago, I helped resettle refugees from the Vietnam War. Trauma and resilience define what it means to be a refugee. All of them had lived through years of warfare. They had seen friends and family members killed. They had to flee the familiar towns and villages they had lived in all their lives. They arrived in a new country with hardly any resources, in a land where nobody spoke their language or understood their customs. Could you do that?

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