Minutes before receiving the genetic test results for my unborn son, Conley, I was driving a stroke victim — an 81-year old woman named Claire — to the hospital in an ambulance. The traffic was unusually thick for 2:30 on a Tuesday afternoon. I had to swerve into oncoming lanes multiple times, switching the siren between “wail” and “yelp” to ensure non-attentive drivers heard me coming.
When we picked up Claire (not her real name) in front of her apartment, she was on a bench. Her body was sagging to the left. The left side of her face was drooping, her speech was slurred and she couldn’t lift her left arm. Yet she insisted everything was fine. “There’s nothing wrong with me,” she said. “Don’t put me in an ambulance.” Eventually, we convinced her to go, and off we went, lights and sirens, through uncommonly busy streets. The sky was cold. The December light made the automobiles shimmer.
I don’t know why I’m telling you about the ambulance trip. Maybe because it seems connected on some vague level to the news I received after delivering Claire to the ER. I was sitting in the back of a firetruck in a Walmart parking lot while the rest of my crew was buying groceries for our New Year’s Day meal the following shift. Greens, black-eyed peas, that sort of thing. I was on a conference call with my wife (Caitlin) and a doctor from UNC-Chapel Hill. Caitlin and I weren’t expecting the test results until after New Years, and we were fine with this, because it allowed us to temporarily pretend like everything was normal. But the results came back early, so there we were, learning about the fate of the creature that’s been growing inside Caitlin’s uterus for the past seven months. There was a gristly knot in my stomach. A tough hunk of meat bubbling in oil.
There was a gristly knot in my stomach, tight and burning. A hunk of meat bubbling in oil.
What does it mean to hit the genetic lottery? On one end of the spectrum, it results in supremely gifted athletes, 6-foot-5, 250-pound linebackers who can run 40-yard dashes in 4.6 seconds. Likewise talented and beautiful actors, with symmetrical faces and uncommon powers of emotion and sensuality. On the opposite end, there are the forgotten. The lottery nobody wants to win, but must be won by some. The unluckily lucky ones, the one-in-a-million that nobody wishes to be.
The doctor is on the phone with us. She’s saying a word Caitlin and I can’t understand. Vanmelderjam? Vannaldergim? What’s that? How do you spell it? OK, Van Maldergem Syndrome. What’s that? Explain it to us, Doc. Extremely rare, she says. Like a bolt of lightning hitting this gene, this FAT-4 gene. Clubbed feet, clenched hands, possible intellectual disability, possible hearing loss, possible soft trachea requiring surgery after birth, difficulty eating, slow physical development, she says, in so many words.
Finally, a diagnosis. After months of not knowing, we now know. But it doesn’t make us feel better. In fact, we feel worse. Within that “knowing” are many unknowns. Encouraging that the most recent ultrasound of his brain looked normal, she says. Not everyone with this disorder has an intellectual disability. But some do. Who knows when we’ll know if Conley is one of them? Just another waiting game, like the one we’ve been playing for months, since an ultrasound at a specialist exposed our son’s concerning abnormalities. Back then, they were just that: concerning, but unspecific. Now we know the specifics. Sort of.
Finally, a diagnosis. After months of not knowing, we now know. But it doesn’t make us feel better. In fact, we feel worse. Within that “knowing” are many unknowns.
My crew walks out of Walmart. Our driver, Joey, carries a bag of enormous collard greens. Big leafy things. Symbol of a New Year. The guys move quickly across the asphalt, eager to get out of the cold. Joey opens the door and hands me the collards. “What kind of news did you get?”
I tell him, and see the water pool in his eyes.
I go home. I mean, my crew tells me to go home. Take the rest of the night off. To hell with this place, says the battalion chief. Family comes first. As I drive down the interstate, 45 minutes back to my brick rancher in a idyllic Appalachian holler, I’m numb. The December light seems paler now. It casts haunting shadows on the soft yellow mountains. I’m floating above it all. The scenery through the windshield is a movie. It’s not a death sentence, I tell myself. There’s still hope. But the knot remains in my gut. The hunk of meat bubbling in oil. How rare is this thing, this Vanmelderjam, no, Vannaldergim, no Van Maldergem Syndrome? Turns out, the doctor was wrong: it’s more rare than being struck by lightning. Lightning hits one in 500,000 people each year, according to the CDC. Van Maldergem has apparently been diagnosed 19 times total. Nineteen. From what I’ve read, only one person in Australia has it. One. Perhaps some of the milder cases have gone undiagnosed, thus making the disorder appear more infrequent than it actually is. But nevertheless. I tried to conduct research online, tried to find potential support groups. But there’s not much out there. What’s the life expectancy for someone with this disease? I don’t know, can’t find that information. What are the chances of intellectual disability? Don’t know that, either. Most of the data is skewed toward the more severe cases, where kids are born with low IQs and look as though they have Downs Syndrome. Don’t let what you see online scare you too much. Those are the more intense cases, the doc said. But prepare yourself for what you might be in for.
Caitlin is torn up, lying in bed. I drop my stuff on the living room floor and crawl under the comforter, still clothed. The abnormal gene, the FAT-4, the one that’s causing the Vanmelderjam, or whatever, came from her. She cries; is hysterical. It came from me, she says. You were perfect. You could have had a normal child with someone else. I wouldn’t want a kid with anyone else, I tell her, and mean it. But don’t you have resentment toward me? she asks. Well, if the script was flipped, and it was me who supplied the funky gene, would you hate me for it? No, I would feel so sad for you. Well, there you go, I say.
And then we just lie there, the curtains pulled tightly over the windows, our room an impenetrable cave. Apropos of nothing, I tell her that I drove an ambulance earlier in the day, about how that was the first time I’d seen a person with obvious stroke symptoms. Why didn’t she want to go to the hospital? Caitlin asks. I don’t know, I say, sometimes people are proud, sometimes people don’t want to believe anything is wrong with them. We lie in silence for a few minutes. Outside our cave, the cold December light is fading and the mountains are darkening. The world is spinning to disappear then emerge again tomorrow, bathed in the pale light of winter.
We should play the lottery, she says, breaking the silence. I mean, what are the chances?
I tell her that we’ve already won the lottery. The chances of winning twice aren’t so good. Impossible, even. Perhaps you’d have a better chance of being struck by lightning. But one can never know anything for sure, now can one?
If not Italy or Holland, then where are we headed?
Wes Chiller’s sophomore EP is the chillest music ever recorded about raging wildfires.
Every time something major is poised to happen in my life, my wife, Caitlin, and I split for the coast. This is a deliberate action.