Life Matters

Tony’s heart is broken. Literally. Maybe that shouldn’t surprise us, since when we adopted him as an infant he was suffering from congestive heart failure, a complication of his premature birth. But that, his doctors told us, had resolved with growth. In the 32 years since they pronounced him healed, we’ve rarely given his heart another thought. Until the last couple of weeks.

We just switched family doctors, from one who over the years has grown harried and ineffective, to one who takes the time to notice worrisome details. Like the fact that Tony’s heart isn’t beating with that steady, determined pace we expect of hearts: 100,000 consistent thumps a day, 2.5 billion in an average lifetime. Like everything else about Tony, his heart rate is a continual surprise. Arrhythmia, it’s called, and while it apparently isn’t cause for immediate concern, still, our new doctor wanted it checked out.

So off we all went to an electrophysiologist—a heart doctor who specializes in rhythm disturbances—for an electrocardiogram. My husband Bob came along, of course, and Tony’s autism service dog, Dude, who’s especially important when dealing with the intimidation of a crowded waiting room.

The visit went well, better than I had any reason to hope for with our volatile son. The doctor had an easy manner that drew Tony in. After an abnormal electrocardiogram, he explained, more testing would be needed: a sonogram of his heart to look for malfunctioning muscles or valves, and a heart monitor—a mass of electrodes and wires attached to Tony’s chest that would record his heart’s activity over 24 hours. Despite his discomfort with unfamiliar routines, Tony was intrigued by the possibility of listening in on the lub-dubbing of his heart and the sloshing of blood through its chambers. Good, I thought. I could hope he’d be willing when the time came for the tests.

But Tony had misunderstood. Like an extreme athlete, he was already hyped for the coming tests; any delay stood a good chance of unraveling his hard-won readiness. And unfortunately, the tests would have to be scheduled for another day.

An aide led us down the twisting halls from the exam room toward the waiting area, Tony plowing ahead of me, waving his arms and breathing threats. “I’ve been cheated!” he chanted, his voice and distress level rising with each repetition. “I need a lawyer!” Trailing close behind him, I laid a steadying hand on his back and kept up my own litany of what I hoped were mollifying words.

They weren’t. While I stopped at the checkout desk to schedule a testing date, Tony plunged on into the waiting room, still threatening mayhem. Bob and Dude, who had been waiting for us there, intercepted him and escorted him hastily out the door. Tony’s parting shot, accompanied by a glare at the dozen startled patients still waiting to see the doctor, was a booming, “This isn’t Ferguson!”

Ferguson? The Missouri town where an unarmed black teen was shot dead by a police officer had featured alarmingly in the news in recent weeks. And certainly the issues raised by the protests there had implications for the security of our own ethnically-diverse family. But Tony doesn’t watch the news, since he’s easily panicked by alarming images beyond his comprehension. So how did he know to invoke Ferguson as an instance of supposed injustice? Then again, Tony is a black young man, living in our mostly white world—there’s no way he could remain oblivious to that.

When I finally reached the car, future appointment sheet in hand, Tony was in the back seat with Dude, still blaring his discontent. I knew from experience there would be no reasoning him through this disappointment, so I limited myself to pointing out distractions along the route home: the loader and dump truck at work along the roadway; a motorcycle custom painted with orange and yellow flames; the giant inflatable bull atop a car dealership. Nothing helped. Then suddenly he fell quiet. When I turned around to see what had stilled him, he was staring out a side window, entranced.

“A balloon,” he said, whispering his awe. I followed his gaze and spotted the distant hot-air balloon, Tony’s all-time favorite sight and a godsend if there ever was one. Silent and serene, it rose against the backdrop of the San Tan Mountains and the westering sun, taking Tony’s attention soaring along with it. The rest of the ride home was at least quiet, if not yet entirely tranquil.

Once safe at home, Tony planted himself in the middle of the living room, pensive and withdrawn. After a time he approached me, shoulders hunched. “Sorry about that,” he said, so quietly I had to lean toward him to make out the words.

“About what?” I said, attempting a casual tone.

He turned so he was standing sideways to me, addressing the wall. “About that . . . blow-up.”

“It was hard,” I said, because I wanted to acknowledge the distress it had cost us both. I reached out to hug him, and he let me. “It’s okay now though,” I told him. I felt his nod in my neck.

~

In its news coverage of the racial protests sparked by the situation in Ferguson, the BBC site features a photo of a handsome young black man, one hand raised, the other clutching a sign that reads, “I might be next.” I pause when I see it, chilled by the realization that some of my own sons could proclaim the same.

During the civil rights struggles of the late 60s, I was a young woman, hoping the hateful effects of discrimination would be banished forever. I reveled in the way whole communities plied non-violent civil disobedience like the powerful weapon that it is. Organizers taught the practicalities of focused resistance: how to hug ourselves for safety should the police carry us off to jail; the complications of tear gas, billy clubs and fire hoses; the lyrics to the songs and chants that inhabited our dreams of an equitable society. “We shall overcome.” And to some degree we thought we had. Apparently not, though, because now there’s this: my grandchildren’s generation is fighting the same battle all over again.

On the TV news, protesters mill in the streets of Oakland and New York, waving signs declaring, “Black lives matter.” They do. And so do all the others. Because if your black son is not safe, then neither is mine. And if my black sons are not safe, neither are my white ones. And neither are yours. That’s the nature of our interconnectedness: our very survival depends on the choices we make about how we treat one another.

Tony, it seems, understands more of this than I’ve realized. Even if he hasn’t often shared his observations with us, that doesn’t mean he doesn’t share our memories. They are not all pleasant ones. Like the well-to-do relative who offered Bob and me and our white kids chairs, and pointed our children of color to the floor. Or the black driver who pulled up beside us at a stoplight and spat into my lap as I sat beside Tony in the front seat. There was the endocrinologist who refused to change our black daughter’s insulin dosage because, “You don’t really believe she matters, do you?” And the modish black woman who accosted Tony in the parking lot as he helped load a cartful of groceries into the van. “You want to get away from that white trash?” she screeched at him. “You come with me!”

We all face hurt at the hands of others, and what often follows is misunderstandings and skewed perceptions. Tony can’t control the way he sees the world, and his autism exaggerates his response to fear and frustration. But like everyone else, what he chooses to do about it is up to him. There’s still power to heal in I’m sorry and It’s okay.

~

It’s Christmas Eve, and we’re back again at the cardiology office, this time for the sonogram and a heart monitor. In the waiting room Tony thumbs through dog-eared magazines while I toy with the idea of letting him go into the exam room by himself. I’ve described the process to him and he’s intrigued, eager to explore the mystery of his heart’s invisible workings. In the end, though, I decide my aspiration to see him grow into real autonomy is more my wishfulness than his current reality. When the tech comes to call him back into the maze of exam rooms, I tail along behind.

“I’m Tony’s mom,” I tell the tech, since that’s not obvious. I’m not the caregiver, not the hired help. He nods and motions me to a chair at the foot of the exam table, within reach of Tony’s feet. I lay a hand on his ankle to remind him I’m close by. Absently, I wonder if he even wants me there. We’ll be looking at the real-time beating of his heart—is that too private an experience to share?

At the moment, though, Tony seems oblivious to me. He reclines on his side in the darkened room, his neck craned to view the screen. The show is not disappointing. For the most part it’s a shadow play of strange forms, as evocative as the pictures we used to imagine in the clouds on lazy summer days, except that the valves in Tony’s heart are alive and moving. A bandleader waves his baton. A wind-up toy soldier taps his tinny drum. Along the bottom of the screen the beats of Tony’s heart create an image like sea waves, spindrift blowing from their crests in a steady gale. The accompaniment to all this is the burbling swish of blood through the chambers of Tony’s heart, like the sounds an old dishwasher makes before you decide to replace it with a quieter model. At intervals the screen changes to display a blaze of fiery colors, reds and oranges pulsing and flashing, then glowing blue like the hottest center of a candle flame.

The test finished, we retire to the waiting room until it’s time to be fitted for the heart monitor. The room is crowded, and we take the last two seats. The man beside Tony looks up when he sits down, stares a moment. “Where are you from?” he asks.

A pause while Tony processes the question and formulates an answer. “Tempe,” he finally offers, naming the nearby Phoenix suburb where we live.

The man turns in his chair to face him directly, his gaze intent. “No, I mean, where were you from before that?”

Tony squirms in his seat. I lean across him and return the stranger’s gaze. “Tempe,” I say, firmly, still smiling politely.

The man ignores me and addresses Tony again. “What I mean is, where is your family from?”

I answer him again, leaning even closer. “We’re all from Tempe.” I’m not sure where this conversation is going and I’m hoping this will end it.

It is as though I’m invisible. “Your ancestors, though,” the man continues, directly to Tony. “Like, I’m from Europe. Or I mean, my family is. My ancestors. Way back. Where are yours from?”

I want to say, “Adoption being what it is, he’s from France and Sweden and Germany, and I’m from Africa by way of the cotton plantations of the South.” But I hold my tongue. Now is the only moment we have, the only one we control. We choose, moment by moment, person by person, how we will respond. Lives matter, even boorish ones—and this really isn’t Ferguson, after all.

Later, at home, Tony slips an arm around my shoulders as I’m stirring soup on the stove. He never does that.

“Thank you,” he says. He never says that.

“For what?” I ask, heady with this rare and heartening closeness.

“Putting your hand on my foot,” he says, then thinks a moment longer. “Being with me for the scary parts.”

In that moment, Tony’s embrace reminds me that my life matters too. Even the scary parts.