Photo by Laurence Griffiths/Getty Images)
The Invisible Ink of Adversity
Where’s our friggin’ marmalade jar? I’m looking right at the upper left shelf in the fridge where I put it. What’s the peanut butter jar and the bottle of honey doing in here? That’s a waste. Too many cooks in this kitchen. So I call my finder. She takes one glance at the first shelf, moves a jar of salad dressing to the side and bam, there’s the marmalade right behind the salad dressing on the first shelf.
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Usually I stand a better of chance of seeing what I’m looking for, but I have a habit of developing a blind spot for the marmalade jar when I see the other cooks in our kitchen haven’t followed my notions of where things go. We have more than two cooks around here, and my wife is “the finder” in our house, with a knack for seeing not only the missing marmalade but the husband.
Cultures have a similar set of struggles with choosing what to see and not see. People who just a few generations ago were “invisible” in our modern US culture are now hard to miss and dismiss: women as political leaders and CEOs, Blacks in power positions, LGBTQ advocates, the disabled among the employed and in the Paralympics. The last week of July this year brought me hope for another group of people who have been hard to see: victims of extreme childhood adversity.
My week began with reading a front page profile in the Cincinnati Enquirer about Bob Shapiro’s successes at the Cincinnati Childrens’ Hospital to build regional awareness about the scope of childhood adversity as a high priority public health problem, not just in our region but across the country. This article was a good sign for growing public awareness. It reminded me that seven years ago I read a memorable statement in the epilogue of a 400-page book about trauma by Bessel van der Kolk, The Body Keeps the Score: “We are on the verge of becoming a trauma-conscious society.” This was a promising condemnation which said that until recently we have been a trauma-unconscious society, not just ignoring but actively denying the scope and severity of trauma and neglect in our country. For many years the writing has been on the wall, but in invisible ink. Most of us have chosen not to look for, see, and understand the facts about the frequency of childhood adversity and its lifelong consequences. Bessel van der Kolk and Bob Shapiro and others are still trying to make that ink visible and get us to see our trauma problem.
The last week in July the New York Times ran a full-page story on Simone Biles’s journey to Olympic supremacy in gymnastics, beginning with her being abandoned as a toddler by her parents, who were in the throes of addiction. As an adult Biles has spoken up about the toll of the abuse she and her teammates experienced at the hands of their national team physician, Dr. Nassar. These once private struggles, like the struggles of countless boys abused by Catholic priests, have moved from invisible and inaudible to now undeniable and actionable.
Given how child-conscious our culture recently has become, it may be hard to remember that just a couple of generations ago children were to be seen and not heard by most adults. Grade school education was a one-size-fits-all offering. And pediatrics had few names or treatments for the kids who struggled or failed. Learning disabilities, attention problems, and the range of impairments that now fall in the autism spectrum were relatively “invisible” to parents, teachers, and pediatricians. During the 20th century infant mortality in the US has declined from 30% to less than 5%, and maternal mortality has also improved dramatically. Now that childhood is safer from death, maybe we can start to pay attention to how our children live and grow, and to how we treat and mistreat them.
Later that last week of July I met for the first time in our Family Medicine Center a woman in her early fifties I’ll call Marsha, a woman who had been referred to me by her family doctor asking if she might have bipolar disorder as an explanation for her insomnia, bouts of high energy, and racing thoughts. Marsha’s chart impressed me with its 26 items in her problem list, most of them physical illnesses, and the 27 items in her medications list. And Marsha herself then impressed me with her jaunty manner of discussing with me her lifelong struggles with anxiety. She lives with her 23 year-old son who has severe autism, and they both get by on his disability check.
As she talked and I sketched her family tree, we quickly figured out that she does not have bipolar disorder. It became clear how her story had unfolded over her lifespan bringing her to her current burdens of chronic arthritis pain, chronic obstructive pulmonary disease, generalized anxiety, and diabetes. When Marsha was three, her mother took off. A few years later her mother returned married to another man and her father left. After her stepfather left, Marsha’s mother then married Marsha’s stepbrother, who regularly beat her, her older brother, and her mother when intoxicated. Marsha ran away at 16, dropped out of high school in the 10th grade, had her first two children by a husband who cheated on her and her third child by a husband who abused her briefly, until she put an end to that relationship. Over five decades poverty, a threatening home life, tough jobs, tough spouses, and smoking had worn down her joints, her pancreas, her nerves, our her lungs.
Towards the end of our appointment we tallied up that she had experienced 8 of the 10 items listed on the Adverse Childhood Experiences Scale: verbal abuse, physical abuse, sexual abuse, maternal neglect, parental addiction, parental separation, witnessing the abuse of a parent, and family mental illness. Multiple studies have now shown that people with four or more of these experiences in childhood have high rates of over 40 poor health outcomes in adulthood. Marsha already has five poor health outcomes: PTSD, diabetes, lung disease, nicotine dependance, and chronic pain.
And yet, here she was, a survivor of multiple traumas and neglect, having raised three children as mostly a single mother, including one who is severely disabled. She had successfully avoided the grip of alcohol, drugs other than nicotine, the hospital, prison, and some of her family genes. She has an alarming family history of mental illness, including two nephews who died by suicide within the past three years, but all three of her children have managed their inherited anxiety without self-harm. At 53 she was seeing a psychiatrist for the first time. Marsha has climbed a steeper mountain than Simone Biles, and both are survivors of mostly private adversity journeys. In our short appointment the invisible ink of her troubled story became clearer to both of us.
Shame is a blinder that keeps us as individuals from seeing what we would rather not see, from speaking what we would rather not say. Cultures are also capable of shame. Nadine Burke Harris, California’s Surgeon General, has spoken about our national shame over childhood trauma and neglect as one of the barriers to better recognition. It’s hard to believe that in spite of all our social advances over the last century, about one in six children still report four or more of these adverse experiences, rich children as well as poor. We now know that we still neglect or mistreat a sizable number of kids. Marsha and Simone were once among them.
All three of these events in my last week of July could not have happened just a generation ago. Slowly, but with promise, the ink on the wall is coming to life and the once unspeakable is now spoken, in the buzz about the Olympics as well as in the quiet of the office.