News & Politics » Feature

Father, husband, schizophrenic

Schizophrenia afflicts three times as many blacks as whites. David Mailey is among its victims, but he’s persevering.

by

18 comments

Early on a July morning, David Mailey and I meet in front of his apartment in Woodlawn and walk a block to 63rd Street to catch a bus. We're heading to Chicago State University on the far south side where Mailey, who's 55, wants to complete a financial aid form and pick up an admissions application. It's a task he's put off for months; he wants desperately to resume his schooling, but the application process daunts him. I've offered to help him with it this morning.

Mailey has a round face, gapped teeth, and a graying beard that's a little shaggy. "I get it trimmed every so many months like a sheep gets sheared," he tells me. "People get on me about it, but I don't have the money to get it trimmed all the time. I say, 'You give me the money, I'll get it trimmed every week.'" He doesn't trust himself to do it. "I go to the barber—he's a professional."

He's in jeans and a T-shirt he got at a giveaway for veterans. "I don't wear the latest fashions," he says. A few short braids are poking out of the back of his baseball cap. (A niece braids his hair every two weeks.) The lenses of his eyeglasses are thick, and the glasses often slip forward onto his sprawling nose. When he was first hospitalized, the medicine he was prescribed gave him double vision, so he stopped taking it, "which I shouldn't have." His vision cleared, but his behavior became bizarre again. "I can either have good sight and be crazy or be sane and not see well," he says.

It's tough to be poor, or black, or schizophrenic. Mailey is all three. His wife is schizophrenic as well. They get by on disability checks, but Mailey doesn't sit back waiting for them. He calls himself a "professional volunteer." For the last 22 years he's done odd jobs at neighborhood hospitals, often five mornings a week. "I don't want people saying, 'See him? He's one of the people just living off our taxes,'" Mailey says. "I'm not leeching off nobody, I'm giving back. I'm working a job, I just don't get paid."

A small silver heart hangs from a chain around his neck—a gift from Michael Reese Hospital for his volunteer work there before that hospital closed. (He now works at Mercy Hospital.) "This is my prize," he tells me proudly, cupping it in his hand. "It says, 'Volunteer, the heart of the community.'"

As we near 63rd, Mailey says, "I have to get up my courage today." Chicago State, at 95th and King Drive, is "out of my perimeter, my safety zone. Everybody has a safety zone—not everybody, some people."

There's a bus stop at the corner, but Mailey wants to walk a block west, to Woodlawn Avenue, because the bus stop there has a shelter. It's sunny and calm today, but he doesn't like standing out in the open.

Across 63rd at Woodlawn is a rambling prairie—fires gutted many buildings here in the 1960s and '70s, and bulldozers leveled them long ago. It was in this prairie that his sister saw Mailey, then 22, performing Shakespeare to a phantom audience one day in January 1978. He'd become acquainted with Shakespeare during a year in college in central Illinois. In the prairie, he was shouting, "To be and not to be! Get thee to a nunnery!" his sister later told him. She'd grown increasingly concerned about her brother since he'd dropped out of college and returned to Woodlawn; she'd also seen him picking up garbage from the street and eating it. On that day in January, she called police. "They put me in a cold paddy wagon, and I curled up in an embryotical position," Mailey tells me as we wait on the bus.

They took him to a state mental hospital in south-suburban Tinley Park. "I knew I was at a hospital, but I didn't believe I was crazy," he says. He went around kissing some of the other patients, and he and another patient tried to break a window because they wanted some air. "Those windows don't break," he says, but one of his fingers did.

He thought his sister was "mean" and "cold" for having him sent to a mental hospital—but now he concedes she was right to do it: "You don't do Shakespeare on 63rd Street."

THE BUS ARRIVES, and we ride a half-mile west to Cottage Grove, where we head to another bus stop shelter.

I've talked with Mailey a handful of times over the last couple of years. He's open and personable, and he makes chitchat easily. When he's describing his past, though, he can be hard to follow. He speaks rapidly, and often omits the context of a particular anecdote, as if he assumes I know it.

He sometimes lurches from one subject to another without transition. Often he'll lean forward and shift into a confidential whisper, which isn't always audible. It can take pointed follow-up questions to understand his stories, but ultimately they almost always make sense. There's a whiff of psychospeak on occasion—you can tell he's spent years talking with counselors. "The reason I socialize is, it's part of my therapeutic concept," he says.

Mailey is just under six feet tall and heavyset—he weighs 270. "A lotta ladies like my physique, 'cause it's built—I haven't been broken down with drugs and stuff," he says. But some addicts resent him for the same reason, he thinks. "This lady at the food pantry always says, 'Something wrong with him.' That means, 'He crazy.' And people don't want to deal with crazy people, 'cause they don't know what crazy people gonna do—they hear about deranged killers, and this, that, and the other. By her saying that, it puts me in a box—I have to go run with other crazy people. So-called normal people, they drink, do drugs—and I'm the crazy person, 'cause I look normal."

As is often the case, Mailey has two shopping bags with him today. He's brought a peanut butter and jelly sandwich, a banana, a bottle of ice water, his pills—he also has diabetes and hypertension—and a rain poncho, which doubles as a pillow when he naps in a park. "You gotta be self-sufficient," he says. "Some people always got their hand out—'Gimme, gimme, gimme.' If people don't give you what you want, what are you gonna do, starve?" He also has various papers in the bags, and his "memory books"—small spiral notebooks in which he's written childhood memories that he likes to read from time to time when he's out somewhere. If he's not going to be taking a bus, he may carry his stuff in a folding shopping cart instead of the bags. His therapist at the Woodlawn Mental Health Center has been trying to get him to stop using the cart and the bags, but no luck. "He thinks it makes me look like a different class of person," Mailey says. "Which I am."

Mailey has come a long way in his life since doing Shakespeare on 63rd. His future looked grim in his 20s, when he was in and out of state hospitals, drifting from one relative to another, staying in shelters, and sometimes living on the street. But he hasn't been hospitalized in 24 years now. He got married in 1992; he has a 17-year-old daughter, a 23-year-old stepdaughter, and two grandchildren. Fourteen years ago he started taking classes at Kennedy-King College, and after 12 years he got an associate in arts degree. He was told there were no more classes he could take at Kennedy-King for free, which is why he's applying at Chicago State.

"A lot of people with his history of mental illness disappear and become isolated," says Jan Gilmore, Mailey's therapist for ten years at the Woodlawn Mental Health Center before he retired in 2009. "But he's out there every day pursuing something. Having a wife with a history of mental illness and having children—it's phenomenal how he's been able to hold it together during all that. He's always been resourceful. He's integrated into the community. And he's street-savvy, which has helped him a lot in his environment."

"He's a pooh bear, a very sweet and loving person," says Shirley Pope, 64, one of Mailey's closest friends. They met at Osteopathic Hospital in 1991 when both were volunteering there. They talk on the phone three or four times a week, and Pope often helps Mailey with his errands. "He loves school and he tries very hard to learn," Pope says. "He tries to do a whole lot of things that are hard for him. There's nobody like David. He just has these issues, through no fault of his own."

THE TERM SCHIZOPHRENIA—"splitting of the mind"—was coined in 1908, but more than a hundred years later much remains uncertain about it. Schizophrenia typically makes it hard to distinguish between the real and the unreal, to think logically, and to behave normally. Schizophrenics may hear voices or hallucinate, and many suffer paranoia. They may have trouble paying attention, and their thoughts may jump from topic to topic. Internationally, schizophrenia afflicts about 0.5 percent of the population, but it's one of the world's most expensive disorders because it strikes early and causes lifelong disability for most sufferers. It usually manifests in a victim's late teens or early 20s, and it afflicts men a little more often than women. Medicine can greatly improve things, but schizophrenics often have difficulty holding jobs and maintaining relationships.

If one identical twin has schizophrenia, the chances are almost 50-50 that the other will as well. This shows the significant genetic component of the disorder but also the role of one's environment. The strongest risk factor for schizophrenia is having a close family member with it.

People born and raised in cities are significantly more susceptible to schizophrenia. Why that's true isn't proven, but some research has linked schizophrenia to a lack of "social connectedness" in urban neighborhoods—of bonding with neighbors and a sense of safety.

Schizophrenia also is more common among the poor. It isn't yet clear whether this is mainly because poverty leads to the disorder, or because the disorder leads to poverty. Child abuse and neglect, and childhood head injury in particular, are potential culprits. Prenatal risk factors for schizophrenia—a mother who suffers from diabetes, hypertension, viral infections, malnutrition, iron deficiency anemia, and bereavement—are common among poor women.

Being African-American is another major risk factor: African-Americans are three times as likely as whites to be diagnosed with schizophrenia, according to a 2007 study in the International Journal of Epidemiology. Even after the study's authors adjusted for blacks' lower socioeconomic status, the rate for blacks was twice the rate for whites. A study of U.S. military personnel published in Schizophrenia Research this year also found the rate for blacks to be double the rate for whites.

Then there's the "two hit" hypothesis, which suggests that genetic factors disrupt early development of the central nervous system—the first hit—causing vulnerability to the disorder. The second hit may be any of the environmental risk factors mentioned above, or an accumulation of several of them.

Mailey with his mother and father. He thinks he was about nine. - COURTESY DAVID MAILEY
  • Courtesy David Mailey
  • Mailey with his mother and father. He thinks he was about nine.

THE COTTAGE GROVE BUS grows crowded as we head southward. By 79th Street it's standing-room-only, and noisy. A small girl in colorful barrettes sitting next to us is practicing her counting out loud; a baby near the rear is crying. The man and woman sitting across from us are discussing her boyfriend's recent release from prison for kidnapping.

Mailey seems unconcerned by the crowd and commotion. He's telling me quietly about his childhood, which was spent in three families. It strikes me that the difficulty I sometimes have understanding him isn't due only to his conversational style; it's also a function of how chaotic his early life was. At 83rd Street he points out the window and says one of the boys he lived with as a child stays nearby—but he hasn't been the same since he was beaten senselessly on the street as a teen. "You would think he's a"—he drops to a whisper—"re-tard." Another relation also lives nearby, but he hasn't been the same either since a long stint in prison for "something to do with a murder."

Where Mailey grew up, there were plenty of chances for "second hits" for anyone with a predisposition toward schizophrenia or other mental disorders. In the 1960s, vast stretches of the south side were almost entirely black and overwhelmingly poor, and suffered from high rates of crime, unemployment, infant mortality, diabetes, hypertension, alcoholism, and drug addiction—the usual products of concentrated urban poverty. That's changed little in half a century. Much of the south side remains poor and virtually all African-American. (Everyone on the bus this morning is black except me.)

Mailey's parents and eight of his ten siblings are dead now. He talks occasionally with his two surviving sisters, but he doesn't consider them close. He was the youngest. Neither of his parents worked regularly. The family got by on welfare, but Mailey says he often went hungry.

When he was four, he was struck by a car crossing Kenwood Avenue and was hospitalized with a head injury. He says he was unconscious for some time. "I got a taste of what heaven felt like," he says on the bus. "I went up, up, up, up, and then—God just sent me back here, 'cause he wasn't ready for me yet." He allows that this "could have been a dream." He thinks the head injury left him "messed up from day one."

His dad was a drinker who told interminable stories about the Korean War, enlisting David as his audience. "He used to grab my wrist and hold it real tight—if you look close you can see some of the marks. If I tried to get away he squeezed harder." The stories "would have made a lot of sense if it wasn't so much pain in it," Mailey says. "He'd be in his bed with his bottle of white port in one hand and me in the other, and he wouldn't let either of us go. I'd be sitting on the edge of the bed listening to his stories until he went to sleep, and then he would loosen his grip and I got away. I know so much about Korea it's like I was there."

Mailey recalls his father working only once, as a janitor in a restaurant when Mailey was 12. "I walked past it sometimes, I said, 'That's where my dad works'—he was mopping the floors, and I was proud.

"He wanted me to be tough," Mailey goes on. "He couldn't stand me 'cause I was a coward. I was the type of person that people used to rob all the time, or they would con me—a girl rub up against me and go in my pockets, or a dude chase me—'Give me your money.'"

He rummages through his bags for something he wants to show me. "It's in here, I know it, unless somebody stole it," he says. "Hope they ain't took it. People take things, they do—they go through your stuff, take what they want and leave you whatever they don't want." Then he finds it—a small, scratched photo of his parents, with Mailey, at age nine or so, off to one side.

His mother was a loving parent, he says. She was also a diabetic, and when Mailey was 12 she was hospitalized and the children were parceled out to various relatives and family friends. The family Mailey went to was another large one—Mailey says there were 12 kids—but it had more money. "I got to eat regular meals and everything."

When he was 13, an older sister had him move in with a family friend, a woman who stayed on the southeast side and who needed someone to watch her children while she worked the streets. Mailey's sister had her own baby to take care of. Mailey dropped out of school in seventh grade and didn't return for a year. He took care of the woman's three younger children through much of his teens. "Sometimes we wouldn't see their mother for days at a time," he says. "I was good at watching the kids, believe it or not. I'm still good with kids, but I stay away from them, 'cause I don't want nobody to get no wrong ideas."

He graduated from DuSable High School in 1976, at age 20. Then he joined the army, but that didn't go well. In basic training at Fort Jackson in South Carolina, a drill sergeant called him a mama's boy and belittled him endlessly. One day Mailey ran away and hid under the barracks. He says he was discharged after just six weeks for "nonproductive performance." He chuckles. "My army papers say, 'This boy need help. He needed help before he got here, we didn't do it to him.'"

A counselor at DuSable got him a scholarship to Eureka College, a small Christian school in central Illinois. He liked being away from Woodlawn—"There was no broken glass around." But he had trouble focusing on his studies and flunked out in less than a year.

He returned to Woodlawn, feeling bad about himself because of his failures and because he was "coming back to the broken glass." He was also growing increasingly paranoid. "I thought every car and everyone was watching me, and chasing me—even little specks of things was out to get me. Somebody was after me. This one particular lady threatened me with a gun, but I don't want to talk about that."

The bus reaches 95th and turns west. "This is our stop," Mailey tells me. He rises, lifts his bags, and we get off at Eberhart. Mailey takes a deep breath. "I know what I gotta do," he says as we cross 95th to the campus. "They're gonna set me up at a computer, and this time I'm gonna get over my fear of using it. I'll have to have that $25 registration fee next time, but the main thing today is filling out the financial aid." Then he abruptly shifts subjects. "The other volunteers at the hospital dress nice," he says. "Dress shirt and ties, so sometimes I wear that too. I want to fit in."

Chicago State's campus is large and wooded, nothing like the cramped quarters of Kennedy-King College in Englewood. "Look at all those trees," Mailey says as we walk toward the administration building. He laughs nervously. "This is way out of my zone."

MAILEY SPENT ONLY 13 DAYS in Tinley Park during that first hospitalization in 1978. He was released to his mother's care. But she herself was soon hospitalized, again because of her diabetes, and she died in 1980. Mailey stayed with a series of relatives but got the feeling they didn't want to be bothered with him. "It was as if I had this terrible disease and they did not want to catch it and they did not want their children to catch it either," he later wrote. A half brother took him in at one point, but he was also schizophrenic. "All he did was collect rent from my little public aid check and half my food stamps, and I had to make it as best I could at the soup kitchens," Mailey says.

He was hospitalized off and on in the 1980s. He was arrested a few times for misdemeanors—theft and disorderly conduct. The owner of a small grocery on 63rd caught him trying to take some snack cakes and "he bust me upside the head. I've been hit in the head so many times I'm lucky I still got a brain."

He was in the Tinley Park hospital again in 1986 when he was interviewed by a woman named Ruth Rogers who directed a halfway house for the mentally ill in Woodlawn. Rogers invited him to live at Woodlawn House on his release. Except for several months back in Tinley Park in 1987, Mailey lived in Woodlawn House for the next five years. In 1988 Rogers got Mailey to attend a day program for the mentally ill at Osteopathic Hospital; the next year he began volunteering in the mailroom at the hospital. When Osteopathic closed its inpatient services in 1995, he started volunteering at Michael Reese. And when Reese closed in 2008, he switched to Mercy Hospital, where he volunteers today.

Mailey met his wife in Woodlawn House. She prefers that her name not be used; I'll call her Debra. Mailey credits a staffer for suggesting that he and Debra go out on a date. "We would have never had enough nerve to like each other ourselves," he says. They visited the Museum of Science and Industry, took in a movie at the Omnimax, and had milk shakes afterward. "We went slow—we just hung out together like buddies at first." In 1992 they snuck away to City Hall and got married. Mailey says it was against the rules of Woodlawn House for clients to get married, so when Rogers found out, he and Debra had to move. Rogers helped them find an apartment. They lived in Woodlawn briefly, then in Chatham for 12 years before returning to Woodlawn in 2006.

Mailey says he and Debra "help each other cope. I just can't imagine the world without her."

Debra had a two-year-old daughter when she and Mailey began dating—the daughter who's now 23. Mailey says he's been the only father she's known. She and her two children live on the south side. In 1994 Mailey and Debra had a daughter who's now 17. She dropped out of school a year ago, to Mailey's disappointment. She's thinking about joining the military. Mailey worries about her. "She's spent her whole life around her dad and mom," he says. "You know what that would do."

David Mailey at the Woodlawn Mental Health Center - JEFFREY MARINI

Rogers also connected Mailey with the Woodlawn Mental Health Center, one of the dozen outpatient clinics run by the city. Mailey meets periodically with a psychiatrist there to review his meds. He used to resist taking the antipsychotic he was prescribed. "It made you stiff like a zombie," he says. In hospitals he'd often "do the abracadabra with the medicine," pretending to take his pill but throwing it away. He has since been switched to a pill with milder side effects. "It used to be you could tell when somebody was on medication, but now you don't know who's on medication 'less they tell you. That's why some people can go to work now."

The Woodlawn Mental Health Center has been "invaluable" to him, he says. He especially appreciates the group of six or eight clients he meets with weekly to chat or play cards. "It's our family," Mailey says. "The group does things that family is supposed to do but isn't doing because they don't accept us. And maybe a couple group members are strong enough, and not schizoid enough, to show up at your funeral or your hospital bed." He often makes brownies for the meetings, even though he can't eat them much because of his diabetes. "I know how good a piece of cake can taste when you been talking."

His wife is a recluse; Mailey is anything but. "Socializing is like medicine to me," he says. "It's like taking a pill. I have to socialize, I have to eat, and I have to take my medicine, not necessarily in that order."

"I'D LIKE TO FILL OUT the financial aid," Mailey timidly tells a young woman at the front desk on the second floor of the administration building at Chicago State.

"You know you can fill out that application online," the woman says.

"No, I want to do it here," Mailey says. He doesn't have a computer at home. He could have done it at a library, but he prefers to fill it out in person.

The woman has him sign in, then leads us around a corner to a monitor at a small desk.

The form Mailey has to fill out is the FAFSA—the Free Application for Federal Student Aid. He started filling it out here months ago with the help of Jan Gilmore, his former therapist at the mental health center, but they didn't quite complete it. Mailey asks me to do the typing. We're able to figure out how to pull up his application and finish it up in less than a half hour. With its 106 questions, the FAFSA can be intimidating for any applicant, but it's a lot easier for a person with no earned income, assets, or investments. Mailey notes that he has an AA degree and will be pursuing a BA.

Mailey thanks the woman who set us up at the monitor, then picks up an admissions application and we head out.

We catch a northbound bus on King Drive—a different bus back because Mailey has an appointment on the near south side with a podiatrist. "I can't believe it took me all this time to get back up here," he says. But he seems relieved and exuberant about having finally taken this step.

Mailey had gotten bad news a few months ago—Mercy Hospital cut his volunteer time from five mornings to two. He says he's still not certain why, but that he was assured it wasn't because he'd done something wrong.

He's stayed busy nonetheless. "Schizo­phrenics sleep a lot, some of them 12 hours a day, but not me," he says on the King Drive bus. He's usually in bed around 9 or 10 and he rises as early as 4 or 5 AM. "If I sleep till 8 I feel like the day is gone." In the early-morning hours he reads or writes in his notebooks and listens to the radio.

When he's not volunteering, he's out doing errands in the morning—grocery shopping, laundry, visits to doctors, the public aid office. (His food stamps didn't arrive last month.) The apartment he and his wife live in is subsidized and they both get food stamps, but they've still struggled to make ends meet, what with their other expenses and the help they give their daughters. Mailey supplements food stamps with visits to neighborhood pantries. "The light bill, I let it build up sometimes," he says. "Ooh, which reminds me—I got to pay $30 on it. I hope I got it in the bag; if not I'll pay on it tomorrow."

He often spends afternoons hanging around the mental health center. His current therapist there has been telling Mailey he needs to get better at looking people in the eye. "But it depends on who the person is," Mailey says. "'Cause it's some shady characters out here you don't want to look in the eye."

WE STOP AT A MCDONALD'S at 64th and King Drive for a late breakfast before he heads on to the podiatrist. Mailey has a southern chicken biscuit, hash browns, and an orange juice. He tells me he took just one course a semester when he was going to Kennedy-King—that was among the reasons it took him so many years to get his degree. Some of his friends at the mental health center teased him—"You gonna go to school for the rest of your life?"—but he stuck with it. "I knew I was gonna graduate one day if I lived," he says. "I had setbacks—some classes I had to manipulate around—but I made it."

When he went to school as a youth, "I wasn't learning nothing; I was just a doofus. Now I learn just like everybody else, but at a slower rate. I understand things that people don't think I understand. I been trying to tell people, 'Just 'cause you have a mental problem don't mean you can't be intelligent.'

"Now I'm going to get my bachelor's degree and do something with it," he says. "And if I don't I'm gonna die trying."

He hopes to get a paying job one day to help support his family. His friend Shirley Pope thinks that's a long shot, as much as she'd like to see it happen. When they were volunteering together at Osteopathic Hospital, "I'd send him to copy something, and he might do something else," she says. "It's a matter of focus. He has the intelligence, but he just can't hold his attention."

Mailey allows that he's always been distractible. "My mind wandered even when I wasn't mentally ill," he says. He thinks there must be a regular job he could fill despite this shortcoming. "I just ain't found it yet.

"People say that if they would have known they was gonna live this long, they would have done this or that," he continues. "I'm sick of hearing that. You don't know when you're gonna die—so you gotta live for the moment, but you also have to plan for tomorrow."

Mailey scoops up the remainder of his hash browns and washes them down with the last of his orange juice. "I still think ain't nothing wrong with me, but I don't tell the doctors," he says. Then he laughs and disputes that idea himself. "It's been over 30 years—if ain't nothing wrong with you, you been fooling a lotta people. So I kinda accept it. When I did Shakespeare out there in that field? Something was wrong with me. I wasn't on medicine then. Medicine makes a big difference, it always has—but you gotta be able to take it."

All things considered, he's not complaining.

"I'd rather be working in a hospital as a volunteer and go home than be living in one," he says. "I got a life now. It ain't much of a life, but it's my life."

Comments (18)

Showing 1-18 of 18

Add a comment
 

Add a comment