IT WAS 6:00 ON a Saturday morning when my husband’s cell phone rang. We were on a weekend getaway in California’s wine country, so the early wake-up was both unanticipated and unwelcome. Confused and groggy, Arno rolled over and pulled the comforter over his head.
“Babe.” I jostled him. “Babe, it’s your phone. Who the heck is calling you?”
Arno slapped one hand on the nightstand, first found his glasses, then his phone.
“Hello?” he croaked.
An instant later he was sitting up, his voice alert and quick. “Yeah, yeah, she’s here. Hang on.”
He thrust the phone toward me. “It’s Sarah. Evan had a stroke.”
What the . . . ? As a doctor, I’m accustomed to getting calls at odd hours from relatives and friends. Occasionally it’s something significant (a friend’s wheezing baby) and I have substantive advice to give (Go to the ER right away!). But more often it feels like I’m running an advice line for the worried well (My two-year-old ate cat poop, what should I do? a cousin asks. Don’t let her eat any more cat poop, I say). So when Arno handed me the phone, the main thing going through my mind was What the heck does she mean by stroke? I pictured my brother falling asleep with a limb tucked under him and waking up with pins and needles or possibly coming down with a case of Bell’s palsy, a scary but benign inflammation of the facial nerve that can leave half your face paralyzed for weeks to months. When I took Arno’s phone from him, I was feeling more skeptical than worried.
“Sarah?”
“Hi, Nadine.”
My sister-in-law’s voice was eerily measured.
“I’m in the ER at UCSF. The doctors here want to do an experimental procedure. They say that it could save Evan’s life, but I would have to sign a consent to be part of a clinical trial. I don’t know what to do. Can you talk to the doctor and let me know what you think?”
My pulse quickened. ER? UCSF? What was going on?
“Sure, sure, put ’em on,” I said, sliding over to perch next to Arno on the side of the bed.
Seconds later, I heard a very authoritative and slightly rushed voice on the end of the line. The tone, more than anything, sent my alarm bells ringing. I recognized it immediately. It was crisp, direct, and concise, a tone I had used many times when I stood by a patient’s bed and could almost see the Grim Reaper standing on the other side. There wasn’t a second to waste.
The doctor briefly introduced herself and then started explaining what the problem was and what they wanted to do. I was taking it all in, nodding and mmm-hmm-ing, until I heard the phrase “blockage of two-thirds of the distribution of the middle cerebral artery.”
My whole body reeled.
“Whaaaaat?” I screamed into the phone.
I knew what that meant clinically; the thing I couldn’t wrap my mind around was the fact that it was happening to my brother. It meant a huge chunk of his brain wasn’t getting any blood. It meant death, most likely. Or, if we were lucky, severe disability. I pictured Evan in a wheelchair with one arm tucked into his chest like a bird with an unusable, broken wing. I pictured adult diapers and home-health aides to help turn him in bed. I pictured applesauce dribbling down the droopy side of his mouth.
I started to sob.
I could feel Arno’s hand gently rubbing the small of my back. I took a deep breath and kept listening.
The doctor paused for a moment and then began again, a little more slowly at first, then picking up the pace. She laid out the survival rates for the standard treatment and explained why she thought Evan’s case was a particularly good one for this new, experimental procedure. I forced myself to take it all in. She explained the risks and the potential benefits, and when she finally wrapped up and told me she was handing the phone back to my sister-in-law, I had to pull myself together. There was no way that I could let Sarah hear the distress in my voice.
“Sarah. Sounds like our best bet is to do this procedure.”
I did my best to sound calm and reassuring.
“Really? Are you sure?”
“Absolutely,” I answered. “It’s our best shot.”
Ninety minutes later, we stepped through the sliding glass door of the neurosurgical intensive care unit at UCSF. Arno carried three-year-old Kingston in his arms. We were escorted to the waiting room, where my parents and my other brothers were keeping a vigil. In the hours that we waited for the procedure to be complete, I could periodically hear the doctors and the nurses in the ICU relaying information about his case: “Forty-three-year-old male with acute stroke, nonsmoker, no risk factors.” The last part echoed and rattled around in my brain. No risk factors.
That wasn’t true.
When my brothers and I were growing up, our mother suffered from paranoid schizophrenia, a severe form of mental illness that, unfortunately, went untreated for many years. As it is for most families with that legacy, the story was complicated. In our house, times of intense anxiety and stress were interwoven with moments of love and joy. My mom taught me how to hit a mean two-handed backhand in tennis and was the fiercest educational advocate anyone could imagine, always saying to me, “Get your education, girl, because once you have it no one can take that away from you!” But when it was bad . . . well, it was pretty darn bad. The problem was that we never knew which mother we were going to get. Every day after school it was a guessing game—are we coming home to happy Mom or scary Mom? Needless to say, it created an environment of repeated and unpredictable stress that marked us in different ways, both negative and positive.
That day, as I sat in the waiting room of the neurosurgical ICU, sick with worry, I couldn’t help thinking about how different things might have been if Evan’s ACE score had been a part of his medical history. Folks with significant ACEs are more than twice as likely to have a stroke. How could his care have been different leading up to this moment if his ACE score was treated as a biological indicator just like blood pressure or cholesterol? If we had known how ACEs are related to this particular kind of stroke, could we have modified the risk? Could this knowledge help prevent the next person like Evan from ever having a stroke? All these questions led me to the same conclusion—when it comes to ACEs, we need more research, desperately.
Fortunately for my family, the research to advance the treatment of stroke paid off. As a doctor, I don’t say this lightly: the experimental procedure that saved my brother’s life was nothing short of miraculous. The team at UCSF removed the clot in its entirety and restored blood flow to Evan’s brain. When he woke up in the ICU, he was still extremely weak on the right side of his body, but within a few months, with intensive physical therapy, he was back to riding his bike in the Marin Headlands and playing basketball with his boys.
When we were kids, Evan adapted to the stress at home by being a total charmer. To this day, he has a natural charisma that automatically bubbles up and puts people at ease. Sometimes I still chuckle when I remember the zingy one-liners he delivered as the emcee of our wedding. He had everyone buzzing with joy and laughter. Our brother Louis wasn’t so lucky. Louis and I were a year apart and looked so much alike when we were little that people often asked if we were twins. Louis was smarter than I was, and unlike me, he was actually popular in high school. But he was also sensitive. His unique combination of nature and nurture led to his own schizophrenia; he was diagnosed in 1992, when he was just seventeen years old. Two years later, he got out of my mom’s car at a stoplight and walked away. We never saw him again. He’s been on the national missing-persons registry ever since. Louis is what brought me to Bayview Hunters Point. I see his face, his potential, his fundamental worth in the faces of my patients.
Looking back, I can see now how I adapted to our mom’s illness by becoming more attuned to those around me. For me, quickly figuring out which mom I was coming home to was the key to navigating our household. Now it’s easy for me to tell when there’s something going on with people by reading a whole bunch of nonverbal cues. It’s kind of like a sixth sense. I would never want to repeat the distressing or unpredictable moments of my childhood, but I wouldn’t wish them away either. They are a big part of what has made me who I am. Sometimes I like to think of this ability to tune in to people as my own little superpower. As a doctor, it allows me to gently ask my patients the right follow-up questions and get to the heart of the matter quickly. This has been a huge gift for me in my practice.
My adaptation to my mom’s illness also delivered benefits in medical school and residency. High-adrenaline situations were where I shone. I wouldn’t be surprised to hear that many of my colleagues found a place for themselves in medicine for a similar reason. Where others might have gotten overwhelmed or flustered, my brain and body were accustomed to working in heart-pounding conditions. I’ll never forget the day in the pediatric ICU at Stanford when, as a second-year resident, I was charged with removing the breathing tube of a patient who had received a liver and small bowel transplant and who we believed was recovering well enough to breathe on his own. For the first few minutes, he did well and seemed stable. But after my attending physician left the room, he suddenly and unexpectedly flatlined. My mind and body went into overdrive. Every ounce of training was deployed swiftly and with precision. When my attending came rushing back in to respond to the code blue, she found me up on the bed metering out chest compressions and calling out doses of epinephrine to the nurse. When it was all over, when we got the patient’s heartbeat back and he was stabilized, my attending shook her head as we took a moment to debrief on what had just happened.
“What the hell was that?” she asked.
“What do you mean? He was in asystole. The protocol says that when the patient is in asystole, you start compressions.”
She laughed. “I know that. I’ve just never seen a resident respond so quickly and decisively before.”
I shrugged. Well, that is what the protocol says, I thought to myself.
That otherworldly clarity, that extra level of focus and performance, is what my brothers, who are football fans, call Beast Mode. It’s what the fight-or-flight response was designed for. That day, standing just outside my patient’s room in the hallway of the ICU, I smiled. Secretly, I felt as powerful and agile as a running back who had just leaped over a line of defenders and into the end zone. Nadine, 1; Grim Reaper, 0. Doctors don’t get to dance a shuffle like Ickey Woods of the Cincinnati Bengals when they do something they feel particularly good about, but I might have gone into the ladies’ room and done a fist-pump in the mirror.
My experience dealing with both sides of the ACEs coin is in part what drives my work. I know that the long-term impacts of childhood adversity are not all suffering. In some people, adversity can foster perseverance, deepen empathy, strengthen the resolve to protect, and spark mini-superpowers, but in all people, it gets under our skin and into our DNA, and it becomes an important part of who we are.
I don’t think people who grew up with ACEs have to “overcome” their childhoods. I don’t think forgetting about adversity or blaming it is useful. The first step is taking its measure and looking clearly at the impact and risk as neither a tragedy nor a fairy tale but a meaningful reality in between. Once you understand how your body and brain are primed to react in certain situations, you can start to be proactive about how you approach things. You can identify triggers and know how to support yourself and those you love.
This is about understanding how adversity disrupts the delicate ecosystems of family and overwhelm us. It’s about recognizing that when it inevitably does happen, we can use what we’ve learned from science to do a better job helping ourselves and one another so we can better protect our children. As parents and caregivers, we can find it hard to admit when we’re struggling. It’s really easy to get caught up in feeling guilty and ashamed about all the ways, both real and imagined, that we have failed our kids. But one of the things I hope you will take away from these pages is an understanding that how adversity affects you is not a referendum on your character. We don’t need to play the shame game. It doesn’t help.
I’m not saying that any of this is easy.
If you’re someone with an ACE score of your own, learning to recognize when your stress response is getting out of whack can be hard. Taking the time and finding the resources to do self-care and get yourself on the path to healing can be even harder. If you’re a parent with ACEs, or even a parent without ACEs, you have a double challenge because you have to worry about taking care of yourself and protecting your child. Or, as we’ve learned, doing the former so you can do the latter.
I learned about the powerful ability of trauma and adversity to shape who we are and how our bodies work as a physician on a quest to heal my patients, but in a sad and unexpected twist, I got to know it in a totally different way—as a mom.
I know what it’s like to be an impaired parent. When I travel and speak, I often tell folks about our crazy blended family and our four beautiful boys. But that’s a lie I use to make other people feel comfortable. The truth is that we have five boys. One year before Evan had his stroke, I had a medical crisis of my own. Ziggy Harris was born on January 31, 2014, at 5:51 a.m. He lived for fourteen minutes and thirty-seven seconds. The moment the nurse took him—blue and lifeless—from my arms was the single worst moment of my life.
Ziggy had been my secret friend for six beautifully anticipatory months. As any pregnant mother can understand, we were BFFs long before he took his first or last breath. He liked pineapple, hated the smell of cooking meat, and his favorite position was snuggling head-down on the right side of my womb. I was pretty sure he was pursuing a black belt in jujitsu based on the kicks that landed on my left rib cage. When we lost him, to say that I was a mess would be the understatement of the century.
Arno and I grieved very differently. He was focused on taking care of everyone, especially the boys. He made sure they got to school on time, that groceries were in the fridge and food was on the table. I, however, couldn’t function. I couldn’t take care of myself, much less anyone else.
One morning, about three days after we lost Ziggy, I got up at four thirty. I couldn’t sleep. In a cruel twist of biology, my milk was coming in. All of a sudden, I couldn’t stand being in the house anymore. Everything reminded me of the baby. The body pillow that I had used to support my growing belly now lay useless on the floor next to our bed. I couldn’t look at it. I begged Arno to take me somewhere else. I needed to get out of the house.
Arno’s face revealed a mix of deep concern and fear. It was clear that he was worried that his wife might be losing her mind.
“Babe, what are you talking about?” he asked gently. “The kids have to go to school today.”
My eyes fixed on my husband. Why the fuck was he talking about the kids going to school? I needed to be away. I couldn’t stand to be in that house for one. More. Minute.
“Well, if you won’t take me, I’ll go by my damn self!” I screamed, then I grabbed my car keys and stormed out the door, leaving my husband at home with our three sleeping children. I wanted to get out of my skin. I was hoping to drive until I found a place where it didn’t hurt so much. That was a mistake. The only thing worse than being at home was being alone.
An hour later, I found myself sitting in my car in front of the Starbucks on Irving and Ninth, sobbing hysterically into the steering wheel. I had to figure out what the hell I was going to do now.
I looked up and caught my reflection in the rearview mirror. For a moment, I almost didn’t recognize myself. Staring back at me in the mirror, wild-eyed, was the semblance of my mother.
Out of nowhere, there was a tap, tap, tap on my window.
In what I can only call an act of divine intervention, Evan was out for an early-morning run, and, of all the places in the city, he happened to be coming down Irving Street and recognized my car.
I rolled down the window.
“Are you okay?” Evan asked.
And in that moment, I realized that I wasn’t. I really wasn’t okay. I needed help.
The minute I recognized that I was unable to function, my first thought was How do I keep this from hurting my kids? Because of what I’d seen in my work, I knew that my falling apart didn’t affect just me. I also knew that two things would be critical to getting our family through this. The first was making sure the kids had the buffering care and love they needed. The second was getting the support and care that I needed. That knowledge made all the difference in the world.
Later that day, Sarah came to stay with us. She provided the safe, stable, and nurturing environment for our children that I couldn’t. She took care of the kids so that Arno could focus on taking care of me. It wasn’t until that crazy morning that we figured out that he couldn’t do both—we needed the village. I will never be able to express my gratitude to Evan and Sarah for being there for us and for our children during our most difficult moments.
There isn’t a day that goes by that I don’t think about the son that we lost. And despite my tendency toward optimism, I have struggled to find meaning in his passing. But I do recognize that we were lucky. In the moment that I was brought to my knees, I had folks I could lean on to help me get back up. That’s something that I am profoundly grateful for. Sitting in my car, crying in front of Starbucks, I caught a glimpse of what it might be like to lose the ability to be the parent we all want to be. My mother didn’t have the network of support that Arno and I enjoy. She also didn’t have the benefit of two decades of research on toxic stress to tell her what the impacts on her children might be and what she could do to help herself and her kids. She did the best she could with what she had.
But we have more now; we know more. I believe that we can rewrite the story of adversity and break the intergenerational cycle of toxic stress. I wrote this book for all of the parents, stepparents, foster parents, grandparents, and caregivers of all stripes who are trying to figure out how to give the little people in their care the best shot in this world despite the difficulties life throws in their way and, often, despite their own histories of adversity. I wrote it for all of the children and young people in this world facing outsize challenges, and for the adults whose health is being shaped by the legacy of their childhoods. My hope is to inspire conversations—around dinner tables, in doctors’ offices, at PTA meetings, in courtrooms, and at city councils. But my greatest hope is to inspire action—big and small.
Whether it’s simply learning to recognize when your own stress response is activated and figuring out how to respond in a way that is healthy and not harmful to the people you love, or becoming a mentor to a child in need, or talking to your doctor, there is something that every one of us can do to change the way we, as a society, respond to ACEs.
I believe that when we each find the courage to look this problem in the face, we will have the power to transform not only our health, but our world.