When You Know Something’s Wrong

Exploring the space between searching for answers and confronting the truth

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I had a recent conversation with writer Karen DeBonis, a friend I met a few years ago through social media and hung out with last summer at a writers’ conference. Like my own memoir-in-progress, Karen’s memoir of personal growth is wrapped in the story of her (now-adult) child’s medical drama.

It’s something she and I have discussed as both writers and moms—the idea of one person’s boundaries intersecting another’s, and how to walk the line between honest disclosure and protection of privacy.

Karen and I each write with the consent of our kids—her son, my daughter—and with the intention of keeping the focus on our individual journeys as moms and women. By the way, I cringe every time I use that word “journey”—it’s been ruined by The Bachelor and well-meaning marketing directors promoting cancer centers (I may or may not be guilty of doing this).

Unfortunately, journey is the best word to describe what each of us underwent, first trying to determine why our kids were not acting typically, and later, learning how to cope with our new realities.

When Karen’s son, Matthew, was eight years old, he developed a strange, eye-rolling tic, which she mentioned to the pediatrician, only to have her concerns brushed off. As more symptoms surfaced, Karen tried to get her husband and pediatrician to see what was happening, but they dismissed her worries. It took three years of her son steadily deteriorating until Karen, a self-professed people-pleaser, finally demanded answers. Shortly after that, an MRI revealed the cause of all his symptoms. Matthew had a brain tumor.

I asked Karen to tell me more about that period of time between symptoms and diagnosis. I wanted to know how she handled the lack of answers as well as the refusal of everyone around her to acknowledge her questions. Following are excerpts from our conversation, edited for clarity.

On Matthew’s symptoms that led to his diagnosis:
First he had his eye tic, and then he developed all kinds of tics—face scrunching and wrist rolling, hip grinding, all kinds of things. He was always very bright. We called him our Little Einstein. But then his grades started slipping and his penmanship became terrible. He grew forgetful and distractible. And even though he was always so hyperactive, he started getting clumsy and lethargic.

On the response from his pediatrician:
Since Matthew was born, we loved her. She was great. When I came to her about his tics, she said, ‘You know, they’re actually common, especially in boys ages 8 to 11.’ One of the difficulties was that I worked in an elementary school at the time, and I started paying attention to the other children and saw, yeah, lots of kids do have tics. Everything that happened, the doctor was able to justify in some way, and I started rationalizing, too. I would go to my school and say, ‘Yeah, some kids do put on weight between these grades.’

I’d complain a bit more and the doctor would do a blood test and it would come back negative. I asked for referrals to occupational and physical therapy, and she said insurance won’t cover it, she wasn’t going to provide them. So I paid out of pocket. The reports came back and basically said he’s just a bit clumsy, but he’s fine. One therapist wrote, ‘He reminds me of my son.’ The pediatrician kind of dug her heels in and stopped listening after a while.

I asked Karen, “Did you find those responses frustrating? Did you find them reassuring because you wanted to believe everything was fine? Or did their answers brush up against your intuition, which was telling you something more was going on?”

It was all of that. It was reassuring, but that just fed my self-doubt. Like, maybe I am making too much out of this. Maybe he’s just a little quirky. Maybe, maybe, maybe. All my people-pleasing kept me from being willing to be wrong—to cause a fuss and then have to admit, ‘Sorry, I guess he is fine. I was mistaken.’ But I just couldn’t push back until two months before he was diagnosed, when I got the pediatrician to refer us to a neurologist.

All my people-pleasing kept me from being willing to be wrong—to cause a fuss and then have to admit, ‘Sorry, I guess he is fine. I was mistaken.’

The neurologist referral was a turning point for Karen’s family, the beginning of serious testing for diseases and entire clusters of possible diagnoses, from muscular dystrophy to Tourette’s syndrome to OCD and schizoid personality disorder. Karen later learned at one point her pediatrician considered Munchausen syndrome by proxy—a form of mental illness and child abuse in which a parent (usually a mother) causes her child’s illness to get sympathy and attention from doctors.

I thought about Karen’s situation long after we spoke. I process ideas by comparing and contrasting. I turned her experience over in my mind, held it up against my own, considered all the angles. And it hit me. Boiled down to its essence, what remained after the specifics of our stories evaporated was rationalization.

Rationalization is a covert form of denial—when you accept one explanation, you effectively eliminate the rest.

A few months after her first birthday, my daughter started changing. She was slowly dropping weight. Soon, her once plump limbs were reduced to sticks, her tummy painfully distended. She had blowout diapers and lost her appetite. She stopped playing and laughing. She fell off the growth chart and the light faded from her eyes.

While Karen had been pushing for answers, I was the opposite. I was just as concerned, but when our pediatrician raised the alarms and started ordered tests, I unleashed a litany of excuses to explain away her symptoms.

We had moved recently, switched daycares. She was still adjusting. One test revealed an intestinal infection—boom, that’s why she’s losing weight. I had an answer for everything because my intuition was screaming that something terrible was wrong and I was in no way prepared to face it directly.

When we finally took her for a sweat test for cystic fibrosis at the order of our doctor, I cavalierly announced, “We’re ruling it out.” She tested positive and I was knocked sideways.

In that gap between recognizing something was wrong with our kids and knowing the truth of what it was, there were rationalizations, both reasonable and absurd. Matthew’s doctors and therapists offered Karen a rope to cling to and she did, sometimes against her better judgment. But all the same, she gripped it for dear life because the alternative was unthinkable.   

In that gap between recognizing something was wrong with our kids and knowing the truth of what it was, there were rationalizations, both reasonable and absurd.

Uncertainty is a void, and as humans we are remarkably intolerant of being in the presence of a space without somehow trying to jam something inside it. We rush to fill the silence. We reach for our phones in the millisecond we detect the possibility of boredom. We strain our eyes in the darkness to discern a recognizable pattern.

And the moment we suspect there is something with us in that darkness that threatens our safety, we rationalize. Fear turns us into little children bargaining to keep a parent in the room at bedtime. Pretty pleeease, just one more drink, story, song, hug, silly dance, prayer. Anything to avoid the monster in the dark whose ragged breath echoes loudest when we stop explaining things away.

I won’t leave you with that bleak thought. Because here’s another truth I’ve discovered. When someone finally flips the light on and your eyes adjust to what’s in front of you, that’s when things slowly start to get better. You can find where to place your next step. You can see that you aren’t alone. You have a clearer sense of purpose as you continue on your “journey.”

Karen’s book, Growth: A Mother, Her Son, and the Brain Tumor They Survived, will be in stores next month and is available now for preorder.

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Three Things That Entertained, Intrigued, or Inspired Me

1) Normal Gossip is back! As with many podcasts, I was late to discover this one, which meant I could binge three seasons before I had to wait with everyone else for season 4. The storytelling is fun and engaging, never mean-spirited, and feels like hanging with friends.

2) I still need to watch part 2, but found the first half of the Hulu documentary, Pretty Baby: Brooke Shields riveting, sad, and like a weird trip in a time machine. Even as I recoiled watching footage of talk show hosts like Mike Douglas incessantly comment on 12-year-old Brooke’s beauty, I found myself uttering nonstop, “Wow, I forgot how stunning she was.” I liked Brooke back then and like her even more now. She seems remarkably grounded and I’m interested in hearing what it was like for her to be the object of such public … adoration isn’t quite the word I want. Desire? Entitlement? I find myself revisiting interactions with certain men from back in my twenties. At one ad agency I worked for, my creative director pulled me aside one day to tell me I was a good writer. I was an art director at the time but always piped up during brainstorming sessions with headlines and copy ideas. He told me he could see me writing a book one day. His partner, the account guy, used to walk into my office to announce he had an erotic dream about me the night before. Back then, I just laughed it off. On my last day, he wished me well and told me he would miss my beautiful green eyes.

3) The latest issue of Craft Talk by Jami Attenberg inspired me. Talking about making “good art,” she says, “But still, I think this is the thing we should be striving for, that one of our ultimate goals, if we take on any kind of project for ourselves, is to make something that we will feel proud of.” My take: you don’t have to be a writer or an artist for this to resonate. It’s not about aiming for perfection, but acting with intention. Giving what we make and do the attention and respect it deserves enriches our daily lives and puts more positivity into the world.