Her Own Flesh and Blood
She survived her generation’s deadliest plague. Most of her family did not.
I. Prelude, Marianne and Darrell, Gwinnett County, 1999
The ferris wheel and a funnel cake, just after dusk at the fairgrounds. The big lights blink and the metal creaks to life as he scoots closer to her. After the ride she blows powdered sugar on him and he chases her over the mulch, holding a greasy paper plate, trying to blow some back. He helps her up the steps of the other rides; on the Scrambler he sits to her left, knowing the force will squish her into his arms. He wins her a stuffed horse, which she gives to a kid standing in line. The only thing he wants is to be with her—to be as close to her as he can. He is aware of her story, has heard about all the terrible things that happened to her. She’s sure that no one will want to be with her again.
She doesn’t think it’s a date but will later change her mind.
Photograph by Audra Melton
She’s given him rides to their church. She’s cooked him spaghetti and made the sauce from scratch. One night they dress up like the Big Bad Wolf and Little Red Riding Hood and go to a party. He babysits her beagle and sits in the bleachers to see her only living son march with his tuba on the football field. He’s divorced, with five kids, and he considers meeting her some kind of miracle. Her friends call him a Bubba, and his sister warns that she’ll literally be the death of him. At first she isn’t that into him. But tonight she sees him differently, not as the quiet little guy at church, but as a simple man without artifice, powdered sugar on his forehead. He makes her laugh the whole night. She doesn’t want to break his heart, and he doesn’t want her to be alone the rest of her life. He keeps telling her that he doesn’t care about her disease. No kissing, she tells him—not out of fear for his safety, but out of chastity. They’re both in their mid-forties.
There are two stories of her life. One really begins that night, with the Ferris wheel and the funnel cake, just after dusk at the fairgrounds. The other—well, that’s her story alone; she’s lived it. It’s been hers every day: when she gets up to take her pills in the morning; when she passes the pictures on the refrigerator; when her head spins after she takes more pills at night; when she wakes up from the vivid dreams; and when she goes to work and looks at the bulletin board, when the knob turns and her office door opens and . . .
II. Grady Infectious Disease Clinic, Room 188, 2011
. . . another young man comes in. He sits down and the wooden chair knocks against the wall. He’s in his early twenties, with high cheekbones, cornrows pulled tightly behind his forehead. He tells Marianne Swanson that he’s a model, just starting his career. She looks at him, spectacles pushed down below her eyes. She’s fifty-five, a nurse, presiding at her desk. There’s a red ribbon above her name on the left breast of her white lab coat; she had it sewn on at Bass Pro Shops. On her desk sits a rectangular plastic tray filled with gigantic pills.
Though he doesn’t seem completely aware of its implications, the young man is beginning a new life. He scratches his elbow, picks at the hole in the knee of his designer jeans. He briefly reciprocates the eye contact, yawns to reveal a row of perfect teeth. He looks at her calendar, turned to April, with horses stomping through a stream; the faded Polaroids of two children, pinned with thumbtacks to a bulletin board; the drawing of a cartoon boy saying, “I have AIDS, please hug me—I can’t make you sick,” framed on the wall.
“Do you know what T cells are?” she asks in a Brooklyn accent.
The room is small, barely two feet between them.
“They’re the good guys,” she says.
In his bloodstream, the good guys have dwindled to a discomfiting count of 189. Someone with a healthy immune system, by comparison, would have hundreds—maybe a thousand—more.
For months the young man has battled pneumonia and hepatitis B. He’s been in a sickbed at a hospital, where he found out the secret he now keeps from his family and friends, but not his lover. He nods when asked if he was sexually active and engaging in at-risk behavior long before he knew. He is part of a burgeoning group of HIV/AIDS patients in Atlanta, a group particularly hard for doctors and health workers to reach out to: young men who come from a background of poverty, little education, and single-parent families; young men who are disenfranchised and often brutally stigmatized, disempowered compared to the middle-class men who mobilized in the face of their deaths in the eighties. It’s a disease you don’t hear much about anymore, but one that is certainly not going away. This young man doesn’t know where else to go.
One of more than 1,000 names on the state’s ADAP waiting list, he’s been sent to this building adjacent to the Krispy Kreme on Ponce, taking Bactrim twice a day to allay the opportunistic infections. ADAP is the state’s AIDS Drug Assistance Program, and the list exists because there aren’t enough funds to provide for all low-income, underinsured people to get the meds they need.
He confides, almost with a shrug, that he started taking his antiretroviral therapy every night when he was diagnosed in November, three medications that gave him vivid nightmares, made him dizzy. Sometime later he stopped taking the meds, then got back on them, and now they’ve run out.
He’s wearing a leather belt with a huge silver skull for a buckle and appears healthy, but for a persistent sniffle.
“I want you to understand about the virus in your body,” she says. “If you don’t take your medicine properly, it can become resistant.”
In the past two weeks the young man has missed three doses of the drugs.
“I don’t like taking four pills a day,” he says.
She puts down the laminated chart with colorful pictures she’s been showing him, as if it’s become too heavy to hold.
He has no idea.
Twenty years ago, the young man would’ve left this office with a different prognosis. He would not have left the clinic with a crumpled paper bag full of any number of almost thirty medications that could prolong his life, thanks in part to the Ryan White CARE Act. Lest anyone forget, there was a time when there wasn’t any medication, a time when a generation of young men like this one were diagnosed and then died quickly thereafter, painfully, sometimes with no one by their side. There was a time when Ryan White was a ghost of a little boy with weary eyes who wasn’t allowed to go to school because the people in his Indiana town were terrified that he could kill the other children by taking a drink from a water fountain; a time when HIV wasn’t just some chronic disease, because it chronically left everyone dead in its wake. No, this young man, tall and fit, wearing sneakers with no laces, would not have left this office with a smile, as he readies to stand now, in this new age; he would’ve left with nothing but the horrific clarity of what awaited him.
This is a story about then and now.
“Thank God we have these meds,” she tells him. “Years ago, everyone was dying.”
He looks at her and has no idea.
He puts on his headphones and walks out the door.
III. The Beginning, Marianne and Jeff, 1981–1987
They were a normal family until the baby got sick. A mother, a father, three children, only for a moment in time. She met Jeff Monforti at a church in Brooklyn and married him in 1981. He was a funny guy, he could sing, and he was Italian. They went to the same church, were saved there. In two years they had a son, Jonathan, and moved to Atlanta, into the spare room of a large house owned by their friend, Pete Falcone, who was also from Brooklyn and was a pitcher for the Atlanta Braves. They settled into a new church, called Hebron Christian, which was made up of young families that met in the YWCA on Lawrenceville Highway. Jeff was always willing to laugh at himself; he loved to talk politics and watch boxing and was a competitive tennis player and brought his twelve-string acoustic guitar to services. He was good with numbers and didn’t love to read. The other men in the church immediately liked him, connected with him; he was like their lead singer. When he laughed, they could hear him all the way out in the parking lot. He struggled to find work, landing odd jobs, roofing houses, and then took technical courses and got hired at a print shop. He was always spending time with Jonathan and taught him how to play baseball.
Marianne, who was a stay-at-home mom, shopped for groceries. She would sit down at the kitchen table and figure out where the sales were, gather coupons. She cooked covered dishes for church picnics, and the pastor laughed that the Italians would all sit together, the Falcones and the Monfortis, their espresso machine with an extension cord that ran the length of the picnic table.
Joshua Paul Monforti was born in an apartment in Tucker, Georgia, in the winter of 1985. Marianne squeezed Jeff’s hands and a midwife knelt on the plastic sheets at the foot of the bed. She had a feeling they’d get another boy and named him Joshua because of the Bible and Paul after her uncle. He slept in an old wooden crib with a gingham-and-rainbow design. He was a normal baby, but only long enough to give them a glimpse of what he would never become. His hair sprouted black. A row of teeth poked through the slender pink ridge of his gums. He learned how to walk. They bathed him in the kitchen sink. She propped him on the soles of her feet as she lay on the floor with her legs straight up in the air, twirling him until he squealed. For his first birthday, she baked him a chocolate cake. He cried a lot, made the same mischievous face over and over. Sometimes he danced. He sat in a high chair and ate Cheerios. He almost spoke his first word, pointing to a ball, but all he ever managed was “baw” before he stopped trying to speak altogether.
One day, when he was fifteen months old, his lymph nodes started to swell from his armpits, eventually growing to the size of lemons. He was treated for the mumps, though he had been immunized right after he was born.
A biopsy proved inconclusive, but after more tests Joshua Paul was diagnosed with something called Burkitt’s lymphoma at Scottish Rite Hospital in 1987. Doctors drained spinal fluid and stuck chemo lines into his groin. The families at Hebron Christian took turns visiting him at the hospital, holding him, singing to him, and babysitting Jonathan. Marianne was pregnant again. Jeff slept in a chair in the hospital room filled with get-well cards and balloons and plush animals. Everyone at the church prayed this mysterious cancer would go away. Jeff and Marianne were with him when he died. They left the hospital and she screamed when they got to the car, the ordinary act of opening the door and going back home, only empty-handed.
He did not die of cancer.
IV. Darrell, 1999–2000
The first time they kiss is at her house, sitting on the sofa, watching TV. It’s like he’s waited all this time, has played this game in his head to try and figure out if she’s really into him, and then, finally, decides to ask her, “Do you mind if I kiss you?” She turns to him and says, “What took so long?”
She takes him to New York to meet her family. Her aunts can’t get enough of him. They try and teach him how to speak Italian. How to say “beautiful face,” which is faccia bella, and so he tries, his Midwestern tongue sliding around in his mouth. Don’t say faccia brutta, they tell him, which means “ugly.” He comes up to her later and tries to say faccia bella but can’t remember.
His father and mother treat her like she’s a daughter from the first moment they meet her, never pretend that the disease is a big deal. But one of his sisters tells him that she won’t come to the wedding because it would be like meeting his murderer.
He doesn’t really propose. That is, he doesn’t get down on a knee. He just keeps telling her that he loves her, and that he’s going to marry her, until finally he does, not a year after the fair. They get married at Lawrenceville Church of God. His five kids are there, and so is Jonathan, who gives his mother away. When the pianist starts the “Wedding March,” she just starts laughing hysterically, even though walking down the aisle is not funny, it’s wonderful. They each have written personal vows to address the other’s children. “I know I will never replace your father,” Darrell reads to Jonathan, “but I hope to carve out a place of my own in your life.”
And he does.
He sits next to Marianne on the bus as it drives to football away games and he takes them to a cabin in the woods where they drink fake Champagne and eat pizza rolls and he teaches Marianne how to shoot a gun. He and Jonathan play chess for hours, and Jonathan calls him “Darrell” and not “Dad.” He helps Jonathan cut the grass, take out the trash; helps him build a poker table and an entertainment center. When Marianne gets on to Jonathan, Darrell sticks up for him. If Jonathan wants to watch a guy’s movie, well, that’s what they do.
V. Annalisa, 1987–1989
A few weeks after Joshua Paul’s death, there was a message on the answering machine for her to call the doctor. And the doctor relayed the news over the phone, as if the message was too difficult to utter in person: Joshua Paul tested positive for HIV, and your whole family needs to be tested. One of the things that defined the disease was its mystery, and it had fooled every doctor and family member and friend who had watched Joshua Paul succumb to it. The public wasn’t sure how it was spread, wasn’t sure who could get it. And no one was sure how long a person could have it before it awoke inside their bloodstream and killed them. This was a middle-class family living a Christian life in Georgia. She and Jeff kneeled by the bedside and wailed in prayer that it was a mistake.
Her test came back positive. So did Jeff’s. They were not offered counseling, because there weren’t any counselors. Her stomach was round with the baby, and she was told there was a fifty-fifty chance it would be born with HIV. They didn’t tell her parents. The first person they told was their pastor. The secret was too heavy to hold, and they were desperate. Listening to them, the pastor realized it was as if their world had come to an end.
The pastor and his wife decided that they had to tell the small congregation; that they risked losing everyone, but it had to be done, because they were part of a family. The pastor wrote a letter. He asked the CDC for an information packet on AIDS and then planned to share all that with the men and women of Hebron Christian.
Annalisa was born at Douglasville General Hospital in December, the nurses dressed in thick, green protective space suits as she came into the world. There was a big sign on her door that warned against blood-borne disease; Marianne flipped that sign over, and it said “AIDS” in red letters on the back.
Annalisa would live for almost two years.
She turned out to be a baby who didn’t fuss a lot. They put a tape recorder inside the crib and played Christian songs; they took her to the National Institutes of Health in Washington, D.C., for an experimental study of AZT. There were so many children there with AIDS; one father pushed his son by their door in a wheelchair and said, “We’re going to get beers and meet chicks!”
VI. Marianne and Darrell, 2000–present
He takes her on a cruise. Four cruises, to be precise—including one on their honeymoon, to the Caribbean; one to the Bahamas; and two more to the Caribbean with the kids. They start this exciting life together, an adventurous life, a type of life that she’s never lived before. Standing on top of a ship and looking at the ocean, taking a safari, riding a zip line. In the jungle, they see big iguana lizards loose in the wild. In Belize, in a cave, they wear hard-hat lights that shine beams into a place as dark and sonorous as anywhere a person could ever imagine. They go to the beaches, to the tropics, run around in the sand. He wants her to live more than she ever has. They go to the Mayan ruins. They go to the North Georgia mountains and taste wine all day. This is not how she was before they were together. She’s never even been out on a lake. So he rents a boat and takes her.
VII. Marianne, Jeff, Jonathan, 1988–1996
The congregation read the letter, heard what the pastor had to say. Hebron Christian decided to support the Monfortis, even though AIDS was such a frightening word.
Of course, everyone wondered how they got it. Everyone asked. Their friends asked, the doctors asked; her parents were incessant in their asking. For a while they told a fib, just to quiet everyone down, to keep up some kind of normal-family facade; she said that she probably got a needle stick somewhere along the line, being a nurse, but she didn’t believe that. When Jeff was in New York, before they were married, he’d lived another life; he’d slept with men. This was something he’d told her, but he’d also told her he stopped when he found God. But then he’d confided to her, and to the men in the church, that he still had a lot of conflicting feelings, and that while she was pregnant with Jonathan, he’d been unfaithful with another man. It made sense; Jonathan was the only one who tested negative. She loved Jeff and had decided to stay with him when he told her all this.
Is that how they got it? Jeff believed so. Two things happened to him in between the deaths of his two youngest children: He became an activist, speaking across the country about what it was like to have acquired the dreaded disease, and he became angry.
A group of men from the church would take him out to a bagel place on North Druid Hills Road once a week. Often they did not talk about the fact that he was getting sick, or that he was losing his sense of humor, or that he had stopped talking as much as he used to. The church members brought the Monfortis food and gave them money and took turns coming over to rock Annalisa every day before she died. He doubted whether people were telling the truth when they told him they didn’t look at them differently, because of course they did; he knew that some members of the church refused to eat the food out of their covered dishes.
At church, as he died, Jeff would sing this song, called “Home Free,” by an artist named Wayne Watson. It became his anthem; it came to somehow define him. He would sing it any chance he could, and it would often move his friends to tears. “I’m trying hard not to think you unkind / But Heavenly Father / if you know my heart / surely you can read my mind . . . ”
She buried him in a black three-piece suit in the summertime. “I want you to bury me in a pine box,” he told her. “I don’t want you to spend a lot of money on it.” They’d never had a lot of money. So she honored his request. She went to the funeral home and asked for the simplest thing they offered, which turned out to be a pine cremation casket, meant to go straight into a furnace instead of the ground. She got dressed up and went to see him on the morning of the funeral, stared inside the open lid. He was forty years old.
As a younger man he’d been in the Navy. She unfurled a big American flag and draped it completely over the pinewood, which helped hide how modest it looked. Near the end, she had visited him at Haven House hospice and fed him orange juice and tucked the blankets over his withered legs, had stared at him when his eyes rolled up in his head and sat quietly when he moaned for her to take him home. He’d let his hair grow long and his beard wild; he’d always been such a meticulous man.
She had been married to Jeff for fifteen years. At the end, he had started smoking, out of the blue, and would sit out on the front porch until four in the morning in nothing but his underwear, staring at God knows what. He began yelling at her and arguing about everything. He stormed through the house. Jonathan would lock the doors behind him whenever he went into a room, for fear his dad would barge in. Her church friends, whether she knew it or not, used to call her Saint Marianne, because she not only didn’t leave him, she cared for him.
But she could hardly bear what he’d turned into. She tried her best to see the man who had sung so beautifully in church and spent hours with Jonathan out in the backyard, kneeling on the dirt, wearing a catcher’s mitt.
She took one last look. And then she forgave him.
VIII. Jonathan, 1996–2002
He grew up. She was certain that she wouldn’t be there to see it. One Easter she had pneumocystis pneumonia, had barely the energy to rise from her bed, was lugging an oxygen tank around the house, and decided to hide treasure maps in plastic eggs in order to make that last holiday memorable. She took Combivir twice and Crixivan three times a day but figured it was only a matter of time. The first year after Jeff passed away, Jonathan was terrified that the medicine his mother was taking would eventually fail her, like there would never be anything to halt his family’s cursed disease. But the medicine worked. The fatigue went away. A child, he implored her not to miss a dose, so she didn’t. That first Christmas she asked him to drag the decorations down from the attic, which is something his father had always done. She taught him how to mow the lawn. She taught him how to drive their Ford Explorer, which they shared. He bought a Toyota Celica stick shift after he saved enough money. She watched him take pitching lessons and took him to a meeting at the booster club, a single mother in a room full of fathers, lobbying that her son should get more playing time. She tried to keep his childhood normal as much as she could. She was supportive when he gave up baseball. She took him to Braves games, to band practice, went with him to Savannah when he made all-state tuba, watched him perform with the Atlanta Youth Symphony Orchestra. They ate seafood on River Street and rode the go-karts at Pigeon Forge and she sat on the bus with his bandmates, toting around a bag full of extra uniforms should anyone need one. They taught each other how to use the Internet. His life became her life. He was the only thing she had left, and so she tried not to allow herself to imagine losing him. He was an only child, and his mother and grandparents bought him just about anything he wanted.
He didn’t tell her things, which she would find out later—for instance, that he didn’t want to tell his friends, for fear they would stop hanging out with him; and then, as he grew a little older, that he’d changed his mind and thought if they were going to be his friends, they should know everything.
Over a campfire discussion at a retreat in school, he told some of his friends that his parents didn’t divorce; his dad died of AIDS. Afterward people would look at him with pity, with a deep sorrow in their eyes; sometimes they wouldn’t drink after him at the fountain.
When he graduated high school, she went to work again. Her doctor said it was time. She was assigned to care for the sick babies at Grady and immediately knew she couldn’t do it. Then she became a nurse who counseled HIV patients. It was all very strange, because she hadn’t planned on living. To go back into the workforce was as unexpected as having the medicine work. She was a survivor, and even the survivors back then had AIDS take most of their dreams. In those days, that’s what it did. People gave up career paths. Sold their homes. Watched those around them die. Planned for the end. There was no treatment. And then all of a sudden they had to live again.
IX. Marianne, 2011
She takes two pills with lukewarm coffee after she eats breakfast, and one pill at bedtime on an empty stomach. That’s the way it’s been, her life for more than ten years. Viread and Videx in the morning, fished from a rectangular plastic container, along with some vitamins; Sustiva at night. She’s always had issues with her therapy; it’s never been perfect, and it never is, for anyone. Sustiva causes dizziness and drowsiness and makes her depressed and irritable. “I don’t laugh now like I used to,” she says. In April she found out she had to switch medications, because her doctor told her there’s a chance of some long-term effects from Videx, which can potentially cause peripheral neuropathy, which is a type of nerve damage. She’s had an undetectable viral load since 1999. The new regimen calls for nine pills a day instead of three. Darrell wonders how, or if, the switch will change her mood, or give her nightmares, or what exactly they’re in store for. She wonders, too; there’s always a risk, and it’s frightening. Through the years, the medicine has slightly deformed her, raised a little hump on her back and made her swell around the middle—but that’s pretty much what it does to everyone. That’s what the new patients find hard to understand, until they live a little while. A chronic disease? Sure. They have no idea.
She has dark circles under her eyes and silvery hair. She asks Darrell what kind of cheesecake he wants her to make. She still cooks most every night. She and Darrell live in a little house in Snellville with an American flag displayed above the porch and an apple tree in the yard and a row of tall irises they planted near the walkway.
“My mom is the strongest woman ever,” Jonathan says when he comes over for dinner. He’s twenty-eight, married, a software engineer with a degree from Georgia Tech who plays Ultimate Frisbee for a traveling team. When he told his wife about his family’s story, she held him and asked, “How did you turn out normal?” He’s got dark skin, dark eyebrows, looks like his father. There’s a picture of him dressed in his black wedding tux, dancing with his mother, who’s wearing a beautiful dress; it’s the backdrop on her computer at work. He helps Darrell clean up the kitchen and asks him for tips on putting sod in the front yard of his new house.
Later that evening, Marianne tries to find the note they wrote to the church but can’t. She finds something else, though, that she didn’t mean to come across; a poem that Jeff wrote right before he lost his mind. People had asked her why she stayed with him, had told her they wouldn’t have blamed her if she’d left.
It reveals so much about him, so much she’d almost forgotten. She couldn’t remember that he’d ever written anything else.
I often wonder what life would have been like, with my children three.
This would not have happened if not for me.
I’m so ashamed of what I’ve done, and often wonder what could have been.
Now looking back on all my three, there were none as smart as these.
The first looks just like his mother and then there is little sis and brother.
He had this little cute dance, she had a smile that put me in a trance.
I think a lot of what he might be or should I say what he could have been.
I think of the young girl I’ll never know, and cry for my wife whom I love so.
I know she says it’s not my fault, but it wouldn’t have happened if not for me.
You need to know it breaks my heart, to know I’ve hurt the things I love so.
There will never be a time when I will not forget the pain I have caused.
No words could express my grief.
So now you know why a little bit better, I don’t talk so much.
There are not words sufficient enough to let you know
How sorry I am.
The week after she switches medication, she gets a terrible rash all over her body and can’t sleep.
X. Memories, 2011
One night Marianne is flipping through some family albums with dinged-up covers and stickers peeling from the spines. She looked for the books, searching shelves and closets where she’d stored things that she never meant to open again, like the little box full of the kids’ toys and shoes and get-well cards and the clothes that she had picked out for them, the tuxedo outfit Joshua Paul wore, the denim wallet his grandfather had given him with three one-dollar bills still folded inside. She had to shut the lid after only a moment of peering in.
The album pages hit each other with a soft plastic snap.
Jonathan being baptized (snap) . . . Jeff in a suit with his collar unbuttoned at a wedding (snap) . . . Jonathan’s first day of school (snap) . . . Annalisa strapped into her Jolly Jump-Up, a little girl with dark hair and dark eyes, in the kitchen (snap), in the living room (snap) . . . Jeff in a V-neck shirt and then playing tennis (snap) . . . Jonathan sitting in his lap, wearing huge, cartoon-sized sunglasses (snap) . . . Jeff holding Jonathan above his head with both of his hands, like a trophy, then Jeff holding Joshua Paul, his fingers touching the child’s face, touching the papoose, feeling the skin (snap)—a dozen bound volumes laid out and taking up nearly half of the long wooden kitchen table, the wind chimes moving silently through the glass window on the back deck—(snap) . . . and Jeff sitting on the couch beside Jonathan, his beard thick but trimmed, his elbow resting on the couch, Jonathan sucking his thumb (snap) . . . a birthday cake (snap) . . . a trip to the zoo (snap) . . . and their old car parked in the drive (snap) and the family standing outside the house (snap) and Annalisa, in a polka-dot dress, her mother’s hands coming through the frame and clutching the girl who sits beneath plush clouds, one eye halfway shut and the other open, reaching for her mother . . .
XI. Epilogue, Marianne, 2011
She explains it again. That’s all she does, explain. What’s it’s going to be like, what it was like, sometimes alluding vaguely back to the days of her biblical suffering. Sometimes the young men listen, and sometimes they don’t. The guy she’s staring at now is wearing a black baseball cap and a green jacket; he was stabbed a few weeks ago. He does not appear to be scared by the things she is telling; he only listens, looks down at his feet, nods.
“Are you having any problems with your meds?” she asks.
“I may have missed one or two doses. It got so late . . . I was out.”
“I’m not here to finger-point you,” she says. “You think I’m being nosy?”
He laughs and shakes his head. He’s on Bactrim, too, because his T cells are down in the 200s.
“Do you know about viral load?”
She’s using a laminated, flip-open informational sheet about HIV, has it open like a pop-up book in front of his face. It shows exactly how HIV replicates. An undetectable viral load is less than seventy-five. Not long ago, this man had a viral load of almost 30,000.
He looks at her.
“Tell me again?” he asks.