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Before Ferguson Beyond Ferguson, a nonprofit racial equity project, is telling the story of families in 63106 during the pandemic. This is the third chapter in Jones’ story, one of a number of timely stories that will be shared with St. Louis media outlets. Find an archive of other stories at beforefergusonbeyondferguson.com.
We are not talking much about COVID-19 anymore. That was the assignment, to follow Steven Jones through the pandemic. He has a rare form of epilepsy, and the lockdown cost him a job that had been hard to find. Plus he lives in 63106, the North City ZIP code made infamous when social science researchers at Washington University and Saint Louis University compared it to 63105, wealthy and mostly white Clayton, and found an 18-year difference in life expectancy—67 years old in 63106 and 85 in Clayton. And this was before the pandemic.
But the topic is wearing on both of us.
“I still don’t know anyone positive, do you?” he asks—and I do, sad to say, even someone who died. “And now they are saying it’s mutating,” he adds with a sigh. “Well, that’s what viruses do.” He is hopeful about efforts to strengthen the immune system: “T cells remember. They still have a warrant out for your arrest!” But other than losing his chance at a job because who needs a janitor when you can’t have public events, his main concern is his four daughters’ well-being, especially his eldest, who lives in another state with her mom. Given the pandemic, Jones can only rely on phone calls to stay in touch, and his daughter is impatient with the constraints: “She argued with me for 40 minutes ’cause I didn’t have an iPhone to FaceTime her!” he says, laughing.
He reads up on COVID-19 for the girls’ sake, worried they won’t take precautions. He is also worried about their education. One of his daughters jumped ahead two grades after a special program; he knows the difference schooling can make. “Take the America’s Center,” he urges, “and let the schoolkids spread out. There aren’t any conventions anyway.”
The next time we talk—which is always hit or miss, because Jones’ electricity keeps getting shut off when he can’t scrape together money for the utility bill—the conversation deepens. When it comes to religion, Jones says, “I have more questions than answers. One little book I can get is Job. I can get Job all day long. But I still have way too many questions. At the end, I just hope everybody gets to go up.”
We talk a bit about human nature. After I admit trying and failing to write mysteries because I can’t plot worth a damn, he calls back with three clever concepts for me. In real life, we agree, evil can be banal. “You don’t get the Dexters,” a reference to a popular series about a serial killer on the premium channel SHOWTIME.
“Or Hannibal Lecter,” I add.
“Hannibal, I had to watch three times. Updated, I’d say he’s the Joker.” From there we move to Black Panther: “So you telling me the world could have been good a long time ago?” Jones says. “Let us all find out there is a Wakanda.”
Escapism can be a form of hope, and thus has its virtues—especially during a pandemic. “The mind needs to go somewhere else, or we will lose it,” Jones remarks. “All at once. Collective consciousness. It’ll be the opposite of Babel—instead of us all building a tower together, we’re all going to tear it down.”
His prediction sounds a little too close to plausible. “Why do human beings so often take things in the wrong direction?” I ask.
“Scientists found out that our thoughts can influence an experiment,” he says slowly, “so we should be able to create good.” Build a tower, not always tear it down. “But it’s a question of balance. Every atom is broken into positive and negative energy. And like with electricity—when you plug in a light bulb, if there’s too much energy, the fuse will blow; too little, and the light won’t come on. There’s either too much good or too much bad. If the world was just good and utopian, it would be boring.” He chuckles. “Y’all really think you are going to go to heaven and it’s not an open bar?”
We laugh about angels on a cloud playing harps; he’d rather have 70 virgins. But his point is, we need to stay in balance. “I don’t think we have ever had a software update as humans,” he says wryly. “I think we are still the iPhone 1.”
I ask about his tooth—it has been hurting for months, but he can’t afford to pay for dental work, and the only clinics that take adults with Medicaid coverage “will just pull it,” he’s sure of it. Medicaid covers extractions, not bridges or complicated dentistry, and it’s a front tooth.
“It only hurts at night,” he assures me. “That’s how I know it’s bedtime.” Brushing makes it worse, he admits, “and after a while salt doesn’t work, and you bite your tongue ’cause your whole mouth is numb from the Orajel.”
What about the epilepsy, I ask. Are the seizures under control? “It’s better than it was. My definition of ‘controlled’ is I don’t have them in the daytime or abruptly, as I did at first. Now, one might wake me from sleep, but I’m usually home in a place where I have damage control, not on the bus or at work.” He is one of very few people who have had this kind of epilepsy. “It has to do with voltage-gated potassium channels,” he says. “I take two medicines twice a day, highest dosage you can take.”
Physicians from the Mayo Clinic were interested, he says. He sees his neurologist regularly. But now the Social Security Administration’s SSI program wants him to see an internist. “I just got informed that as Black men we don’t have regular doctors, and that’s why we are leading in all these diseases,” he says. “Well, who tells us we need to go? We didn’t learn that in health class, that we needed to go to the doctor even if something wasn’t wrong with us. If y’all let me know these things, I will do these things.”
A minute later, he says, “The people that are up there in the office, have they ever been down here?”
I’m not sure which office he means, and then I realize it doesn’t matter. There’s always an “up there” and a “down here.” Could be the social services bureaucracy, could be the healthcare provider, could be any realm of life.
Epilepsy is what’s making it so hard for Jones to find work. “I have to avoid extreme temperatures, picking up heavy weight, standing on my feet longer than eight hours without breaks—and they never want you to take a break. It’s not that physically I can’t do it; it’s the change in blood pressure that happens with everyone. When you stoop, then stand up fast, you get lightheaded. I just get lightheaded a lot easier—my brain is having to do more work to regulate the blood flow. My brain already has, let’s say scars, on many nerve endings from the previous seizures.” He pauses. “I’m more susceptible to Alzheimer’s, they say.”
For safety’s sake, we always talk by phone, but I can practically hear him shrugging this off. He is more interested in current events than his own future. “I’m really not impressed with the NBA putting ‘Black Lives Matter’ on the floor,” he says. “People like me feel like that was almost like saying there’s no more need to kneel. Black Lives Matter has become a brand to sell; it’s no longer about revolution.” Consumerism can do that, he adds, thinking of all the BLM products that appeared instantaneously. He is tired of the buy-buy-buy of this culture. “I’m not paying money for Italian leather till I meet a cow that moos in Italian,” he adds with a chuckle.
I am still trying to figure out a comeback when he turns serious again: “Flint, Michigan, still doesn’t have clean water, you know? This country was built on being No. 1, and then all of a sudden we gave the kids participation trophies that were all the same size. There’s no more striving to do better.
“I let my girls do whatever they are interested in,” he continues, “because the quicker they figure out who they are, the quicker I can help them. Once you find yourself, baby girl, then we can take off. I give them the idea that I’m really going to let them free, but I’ve got an evil eye on them. The eldest, oh! Once we got through with the menstrual thing, I thought, OK, it’s gonna be good now. My mom said, ‘You’ve got four girls!' I thought, well, once I figure it out with the one... She said, ‘You’ve got four different girls.’”
They compete on the phone for his time and attention, he says. “I’m here ’cause I’d rather them get it from me than be searching for it later. That’s that void, when women are looking all the time for a man who really cares. Some may do it in their own weird, drunk way at the club, but that’s not what they are looking for really; it’s just the only way they know to get your attention.”
Having four girls has opened his eyes wide. “To find out how many girls have been molested at that age. I had to have the talk with their two moms: Look, there’s a lot of stuff that goes down.” He knows he’d kill anybody who ever hurt one of his daughters. “And I’m not trying to go to jail forever. So what I really need you to not do is put my daughters in any situation where they could get hurt. ’Cause they’re all I’ve got. And I’m all they’ve got, when it comes to protecting them from the big bad wolf.”
When the big bad wolf is a pandemic, though, there is only so much he can do. And that does not bear thinking about, so we turn back to politics, the limits of the electoral college and two-party politics, the financial barriers that keep anybody who’s not a billionaire from running for president, and how people were once afraid that the late Tupac Shakur would run.
“People underestimated him,” Jones says. “The dude loved Shakespeare. I’m probably the only other Black person I know that knows Shakespeare plays. Having that wide spectrum gives you a better sense of overall reality.” (Jones is comparing Shakur to the incumbent president, who as far as he can tell knows only a certain sliver of the business world.)
People come by their reactions naturally, he adds. “Why don’t my kids like the police? We were at the McDonald's across the street when Mike Brown was shot. We hear all this gunfire, and I’m trying to cover them up, make sure they good, and then it just unfolds into that raggedy mess. I knew him personally—my girls knew Mike from coming over doing music with Daddy. So now they are super aware.”
As is he; he says police shot one of his friends at a MetroLink station. “But I can understand the cop’s thought process,” he adds. “All he sees is the guerilla warfare environment. You can’t bring a cop in from somewhere else. If I drop you off in my neighborhood, you ain’t gonna know how to operate.”
The next time we talk, Chadwick Boseman has just died from colon cancer. “The Black Panther! I’m 33, and he is older than me and a millionaire and still felt like there was no need to have a doctor,” Jones points out, guessing at this and finding the notion reassuring. “Most Black men don’t go to a doctor if there is nothing wrong. And colon cancer, you can’t even tell you’ve got it until it’s too late.”
On a hunch, I check the stats while we talk. African-Americans are 40 percent more likely to die from colorectal cancer. “It’s because of later-stage diagnosis, it’s because of systemic racism and all that this population has been dealing with for hundreds of years,” Rebecca Siegel, scientific director of surveillance research at the American Cancer Society, told The New York Times.
“And it even got the Black Panther,” Jones says glumly. All the technology in Wakanda—or the U.S.—did not save him. The cancer was already Stage 3 when it was diagnosed.
“Good thing you’re doing this,” Jones adds, “because people have no idea.” Nobody in his world compares notes on all those checkups, the way women bug each other to get mammograms. “I don’t know anybody with good health care.”
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