Navigating a World That Sees My Black Son’s Suffering as Incidental

One cause of your son’s seizure, the doctor says, could be syphilis. Ask what’s the basis for such speculation, given that no physical exam was conducted, no blood work drawn, no urine sample taken, and that your son, who is lying on the hospital bed before you looking bewildered, is 12. “Obviously it’s not unheard of for 12-year-olds to have this disease,” she responds, which is impossible for you not to hear as, “You’re black, so I shouldn’t have to tell you this.”

But it is possible, apparently, not to lose your temper. Be grateful for the article you read last month about the benefits of breathing exercises in times of high stress because the one you’re doing now is actually working. Before speaking, take another deep breath, followed by a slow exhale, focusing, all the while, on the air passing through your lungs. There.

Now tell your family it’s time to leave. Marvel at the calmness of your voice and wish you’d discovered this exercise years ago, long before your high blood pressure and reputation for being angry. Pat your son’s shoulder as you nudge him upright. Take him home. Once home, in your study, do some Google searches. Start with syphilis.

Tell yourself you know your son doesn’t have syphilis but you’re curious to see if the doctor was racist and dumb or only racist. Find it hard to decide; syphilis left untreated for a decade can cause meningitis which can cause seizures. Forget the doctor and just search “adolescents and seizures,” but when you reach the part about brain tumors turn off the computer and work on your breathing some more. Come up with your own diagnosis; the seizure was a fluke, a random occurrence, like hiccups or warts. Try to convince yourself there’s no need to worry.

There is need to worry, though, because your wife is in the kitchen screaming. Run there to find her standing next to your son, who is seizing again, his thin quivering arms bent at odd angles like a scarecrow’s. Choke up tomorrow as you recall how your ten-year-old gently placed a hand on his brother’s lower back to steady him but for now keep it together. You need to be strong. You need to be wise, too, which is problematic; the seizure has run its course and your son looks at you with fear in his eyes and says, “Daddy, why is this happening?”

You cannot answer this. Believe a good father could. A good father, if you think about it, would not have bought a house in a small white town so that when medical emergencies arise paramedics take you to the nearby small white hospital instead of to Boston, 30 miles away, where the world’s best hospitals receive black people all the time. And a good father would have just said, “We’re driving him to Boston Children’s,” before his wife beat him to it. Agree with her, at least. At least get the phone so she can arrange a sitter.

The bottom line is you’ll be here a while, maybe all night, unless, that is, your son has another seizure.

It is Saturday, shortly after 9:00 pm. Very few cars are on the highway. Conclude, in other words, that there’s nothing to prevent you from showing your resolve to get answers by driving 90 miles an hour, except for your wife, who thinks she can do so by calling you a lunatic. She can’t. She doesn’t even know what a genuine lunatic looks like. Let a cop stop you; then she’ll know. Just let one stop you. Let a white cop stop you, damn it. A white cop, with some weird-ass sunburn in December, probably, and his mouth full of tobacco. Between the tobacco and a Southern drawl you will barely understand him ordering you to step out of the car, boy, and keep your hands where he can see them. He’ll see your hands, all right. He’ll see them as they’re going upside his goddamn head . . .

Snap out of it. You’re getting worked up and so is your wife, who’s now demanding you to slow down. Go ahead and do it and while you’re at it remind yourself that stress kills. You don’t want to end up like your father, after all, who only lived to be 68, although that was much longer than your brother, who only made it to 47. You’ve outlived your brother by two years but outliving your father will be harder.

You are even more high-strung than he was, a trait greatly exacerbated by fatherhood, or rather by the inadequacy fatherhood often makes you feel, especially when you think of your duty to protect your sons from harm, including, needless to say, racism. You think of this duty all the time. Lately, when thinking of it, your mind plays tricks on you by swapping out your sons’ faces with the face of Travyon Martin, the recently slain black teen. When this happens your breathing exercises do not work. They only work on things like being told your 12-year-old has syphilis.

It’s 10:15 when you arrive at Boston Children’s. Even at this hour the place is packed. Fill out some paperwork at the receptionist’s desk and then sit in the waiting room with dozens of other people, many of whom are black, which is good to see, but wish they were not here. Wish there were no white people either. Or Asian. That woman and infant of dubious ethnicity can stay because there are only two of them but in a perfect world they would not be here either.

The bottom line is you’ll be here a while, maybe all night, unless, that is, your son has another seizure. Hope that he does. A brief one. No more than ten seconds or so, just long enough to get the receptionist to call triage. Or maybe he can fake a seizure. That would be better, now that you think about it, since who knows what kind of damage the seizures are causing his brain, or who knows, as you think about it more deeply, what kind of brain damage is causing the seizures.

If he has brain damage that’s not a tumor assume it occurred at Mercy General, another small white hospital, where your wife’s seven-hour labor culminated in him being stuck in her birth canal. The doctor held off for so long to have a C-section that it became more of a life-threatening proposition than continuing to try to suck your son out with a vacuum. When the vacuuming presented itself as the greater threat, an emergency C-section was ordered, but right before your wife was rushed to the OR the doctor made one final attempt, yelling push, push, push as you whispered please, please, please and with that your son plopped free with a blue face and his head smushed into a cone. Now he’s having seizures.

And now, unlike then, when you wept with gratitude while hugging the staff, let this thought enter your mind: if your family had been white, a C-section would have been performed at the first sign of trouble.

“Are you okay?” your wife is asking. “I’m fine.”

“Then why are you doing your breathing exercise?”

Tell her it’s precautionary. Tell her that even though Boston Children’s is one of the world’s premier heath institutions, the doctor you get could be a screwball, a real nut-job who somehow slipped through the cracks, and then notice your son’s wide eyes and realize this was the wrong thing to say. Put your arm around his shoulders. Tell him not to worry. Assure him that the doctors here are as sane as you are and that, if he wants this proved sooner rather than later, he must fake a seizure. He chuckles, because he thinks you are joking.

Two hours pass before a nurse calls his name and leads your family to an examination room. After she takes his vitals, your wife describes the seizures from earlier today before mentioning another, the one that occurred when he was two because, you later learned, of a temperature spike. You hadn’t thought of that for some time but the memory returns with awful clarity, the way his body went rigid as you were buckling him into his car seat, how his eyes rotated in their sockets until only white remained. You yelled for your wife to call 911 and while you were snatching your son into your arms you pictured your father, who was epileptic, thrashing about on the floor with blood oozing from his mouth as he involuntarily bit his tongue.

You will never forget that blood. You were still thinking of it when the paramedic admonished you for risking being injured by forcing a finger between your son’s clamped teeth, but you knew, if necessary, you would do it a thousand times more. You would have done it today. You would have, but all your son did was tremble, his mouth slack but also—as if he were trying to keep you from stressing out, from completely losing it, from dropping dead like your brother of a massive stroke—fixed into a sad little smile. You will never forget that sad little smile either.

The clerks are speechless. They look aghast. They are staring at you with gaped mouths as if you’re a lunatic but they have no idea.

Your wife finishes giving his medical history. The nurse, before leaving, says a neurologist will be in shortly. Wonder what she meant by that two hours later. Your son is asleep. You are angry. Your wife is legendary for her patience but she is getting angry too. Do not bother suggesting she join you in doing a breathing exercise because when you first mentioned its benefits she said it was not for her. It is for you, though. It’s helping you stay alive. Decide that all it needs is a modification. Leave the room.

There are no nurses at the nurses’ station but two clerks are sitting there talking. When you reach them, inhale deeply, and then slowly exhale. Do this once more. Now tell them you have been waiting to see a doctor for three goddamn hours. Tell them this is unacceptable, this is some bullshit, and then insist on seeing someone right now, just as you should have insisted that the paramedics bring you here and you should have told that syphilis doctor to fuck herself and you should have, all those years ago, demanded a C-section as soon as there was trouble.

The clerks are speechless. They look aghast. They are staring at you with gaped mouths as if you’re a lunatic but they have no idea. You could show them what a real lunatic looks like. You definitely could. Instead, as you back away, show them more deep breathing.

A moment after you return to the room a doctor bursts in, already apologizing. There was a mix-up, he says, at the change of shift; no one informed him that you were here. Maybe this is true, maybe it’s not. Decide for the time being it doesn’t matter. All that matters is that he’s here now and your son is having seizures and you want to know why.

In five days you will. One referral will lead to another which will lead to a diagnosis of Paroxysmal Kinesigenic Dyskinesia, a neurological disorder that can trigger petite seizures when the body is suddenly thrust into motion. It strikes pubescent children and can last through their late teens or early twenties. It’s a rare disease, largely unknown to the medical profession, and next week, standing before you in this very room, as fate would have it, will be the neurologist credited with its discovery.

There are medicines to control the seizures, he will say. He will say everything will be fine. The neurologist standing before you now does not say everything will be fine, but he knows enough, after thoroughly examining your son, to say this: “The seizures themselves, while frightening to experience, and no doubt even more so for parents to witness, are harmless.”

Look at your wife and son. See how their faces have broken with relief. Yours has too, but only for an instant before stiffening again, the result of another modification you add to your breathing exercise. From this point on, whenever you are under high stress, after you have blown off a little steam between deep breaths and slow exhales, think of something you have done, as a father, that is worthy of the title. Right now think, once again, of your son’s first seizure. Picture yourself clutching his rigid little body. See yourself staring into the void of his eyes. “I’m here, I’m here,” remember whispering, as his teeth bore into your skin.

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