When a devastating diagnosis upends her life, Marianne Swanson still finds a reason to rejoice.
By Jon Waterhouse | For the AJC
Shock and confusion swirled in Marianne Swanson’s mind. Like the garbled voice of Charlie Brown’s teacher, the words coming from the other end of the phone made no sense. The message might as well have been fiction, a simple mistake or someone else’s problem.
Her 20-month-old toddler Joshua Paul had died just a few weeks earlier from cancer. But now she was learning that a post-mortem blood test had revealed something more.
Joshua Paul had tested positive for HIV. In all likelihood, Marianne was HIV positive, too.
It was 1987, and Marianne couldn’t have been further from the profile of a typical AIDS patient. A full-time homemaker and mother living in Tucker, Marianne’s only contact with a needle involved a thread or a visit to the doctor. Most of her wine intake took place during communion at church.
A snapshot taken during happier times shows Marianne, husband Jeff Monforti, their 4-year-old son Jonathan and baby Joshua Paul captured in a moment of suburban family bliss. The olive-skinned Italian quartet share the same chocolate brown eyes and bright smiles as they look directly into the lens. A wedding portrait of Jeff and Marianne hangs behind them in an oval frame. Picture perfect.
Her belly swollen with her third child, Marianne cradled the telephone receiver and listened intently as it dawned on her that life as she knew it was over.
Joshua Paul gets sick
Marianne was working as a nurse at St. Vincent’s Hospital in Manhattan’s Greenwich Village when she met Jeff. They performed together in a folk group at their Catholic church in Brooklyn. She was attracted to his humor and his singing voice, and she liked that he was also Italian.
They wed in 1981, and Jonathan was born two years later. The following year they moved to Atlanta after visiting their friend, Braves pitcher Pete Falcone, and falling in love with the city. The young family found a spiritual home at Hebron Christian Church in Decatur, where the intimate congregation became instant family. Young couples, many transplanted from other cities, often socialized together in each other’s homes over potluck dinners. At some point in the evening, Jeff would inevitably grab his guitar to strum and sing as others joined in and children pounced and played around them.
Jonathan had been an easy baby. Plop him on the living room floor with a pile of toys, and he’d play quietly. He only cried when hunger panged or his diaper needed changing.
Joshua Paul, born in 1985 at their Clarkston apartment with help from a midwife, behaved differently. Continuously cranky and needy, he craved a near-constant spot on either Marianne’s or Jeff’s laps. He recoiled from strangers, so babysitters were never an option.
At 15 months, the toddler began showing signs of swollen lymph nodes in his neck. After a flurry of tests, doctors at Scottish Rite Hospital diagnosed Joshua Paul with Burkitt lymphoma, a rapidly growing form of cancer often associated with impaired immunity. Later he also was diagnosed with Cytomegalovirus (CMV), a virus that can be harmless in a healthy adult but devastating for infants born with it.
Joshua Paul underwent treatments including chemotherapy for more than three months. Jeff and Marianne held vigil at the hospital and received regular visits from the Hebron congregation. Their pastor, Bob Lake, was a fixture. Concerned that Marianne, who was now pregnant with their third child, wasn’t getting the nutrition she needed, he often took the worried parents out to lunch.
Joshua Paul died in the summer of 1987, his parents by his side at the hospital. On the way home, Marianne’s screams of grief rattled inside the car.
Reflecting on her child’s short life, Marianne is grateful Joshua Paul had been such a demanding child.
“I was forced to spend so much time with him. It was a hidden blessing,” she said.
How we got the story
Jon Waterhouse first met Marianne Swanson when he was writing a story about careers in HIV/AIDS nursing for the AJC’s Pulse magazine for health care professionals. He had no idea of her personal ordeal when he sat down to talk with her about her job. He was so moved by her story, he knew it would make an inspirational Personal Journey. It’s hard to fathom how one person can endure so much sorrow and emerge not just whole but stronger than ever. Swanson manages to do that with grace and dignity. Waterhouse was correct. Her story is an inspiration that helps put life’s more mundane trials in perspective.
Suzanne Van Atten
Personal Journeys editor
Compassion and support
Following the revelation about Joshua Paul’s HIV status, the rest of the family was immediately tested.
Marianne and Jeff both tested positive; Jonathan did not.
Early in the couple’s marriage, Jeff had confessed to having a same-sex affair while Marianne was pregnant with Jonathan. Now they were facing the consequences.
“I had walked through, making the choice to stay together, overcoming it as a couple and continuing to raise our son together,” said Marianne. “Then boom, this hits.”
By 1987, the AIDS epidemic had just begun to turn a corner. In March of that year, the FDA approved the use of AZT, the first anti-HIV drug available for use in this country. Still, patients continued to die in dramatic numbers. Just a year earlier, U.S. Surgeon General C. Everett Koop compared AIDS to the Black Death. Unfounded fear of contagion and anti-gay sentiment were rampant.
Still, Marianne and Jeff stuck together, drawing support from each other. She had dealt with Jeff’s betrayal years earlier, and she refused to play the victim now.
“I could never, ever point a finger of accusation like, ‘You did this to us.’ I never did that,” Marianne said.
She did, however, need to talk to someone. She didn’t want to burden her parents. They were still reeling from the loss of Joshua Paul and preoccupied with caring for Marianne’s aging grandmother in New York.
Marianne and Jeff decided to confide in Lake, the pastor who had walked alongside them during Joshua Paul’s illness. She and Jeff set up a meeting with Lake and his wife and told them everything.
If I lose my whole congregation, I don’t care, Lake told the couple. I’m going to stand behind you guys and support you.
With Lake’s help, Marianne and Jeff composed a letter explaining their ordeal and mailed a copy to every member of the congregation. A pamphlet on HIV/AIDS was tucked inside each envelope.
The couple were stunned by the congregation’s love and support. “There was nobody who turned away, nobody who ran scared, nobody who felt they wouldn’t want to be near us,” Marianne said.
Instead, piping hot meals arrived, financial support came in, babysitters stepped up. Any need that arose was filled.
Pressed to reflect on that time in her life, Marianne admits to bouts of anger, sorrow and frustration. But she prefers to remember the times she managed to channel her emotions in an unexpected way — by rejoicing.
A Bible passage from Philippians became her mantra. Rejoice in the Lord always. I will say it again: Rejoice!
In the middle of church service, Marianne could be seen raising her hands high and praising God.
“It was like therapy for me, something I was determined to do. It didn’t matter where I was, in church, at home, I praised God in the midst of my suffering,” she said. “I met the Lord in the darkness and found him there with love, comfort, wisdom, forgiveness and all that He is.”
Reasons to rejoice
- Marianne’s office at Grady Hospital’s Ponce de Leon Center features her “wall of inspiration,” a collection of famiy photos, and an AIDS poster given to her when her daughter was struggling with the disease. Photos: Curtis Compton /firstname.lastname@example.org
- Marianne with her cat Drizzle.
- A 1987 family photo captures Marianne, pregnant with daughter Annalisa, husband Jeff Monforti, and sons Joshua Paul, 20 months, and Jonathan, 4, not long before Joshua Paul’s death.
- Marianne in 1987, pregnant with daughter Annalisa, with sons Joshua Paul, 20 months, and Jonathan, 4, not long before Joshua Paul’s death.
- Marianne holds Annalisa shortly after her birth. She died five months later.
- Jeff shows Annalisa her first birthday cake. She died five months later.
- Marianne poses for a family photo with Jonathan, when he was a senior at Shiloh High School in the band. Her goal to see him graduate helped her power through dark times.
- Marianne gets a hug from clinic assistant Jerry Catchings at the Ponce de Leon Center, where the sickest of the sick AIDS patients receive treatment for the disease, as well as dental care, mental health care and nutritional education.
- A ray of sunlight breaks through a window and envelops Marianne Swanson in a bubble of light while she makes her rounds during her shift at the Grady Ponce de Leon Center in Midtown.
- Marianne holds treasured gifts from her AIDS patients she keeps in her office. The African angel was from one of her first female patients while the porcelain angel was from a male patient who could not easily afford to give a gift.
- Marianne at home with her husband, Darrell Swanson.
- After a particularly hard day at work, Marianne relaxes with Darrell on the love seat in the living room of their home. On the table is the framed Bible verse Psalms 116:7-9.
- After a hard day at work, Marianne falls asleep in the arms of her husband, Darrell Swanson, with her cat Drizzle on her lap. Marianne, who was exposed to HIV by her first husband, sometimes struggles with fatigue.
Eye on the future
The year ended with the birth of baby Annalisa. Doctors predicted she had a 50 percent chance of being healthy. At six weeks of age, the infant was diagnosed with full-blown AIDS.
Annalisa’s medical fragility kept her in the hospital for half of her brief life. Doctors fought, the Hebron folks rallied and her ailing parents dug in deep.
On Annalisa’s first birthday in 1988, Marianne dressed her in a pink and white dress with lace and a bow on it, a matching headband stretching across short raven hair. In a family photograph, Jeff is pictured holding the child as she gazes at a massive cake coated in thick pink icing.
Five months later she was dead.
Jeff’s health began to deteriorate soon after. He developed Kaposi sarcoma, a cancer once common to AIDS patients that causes tumors on the skin. There was a laundry list of other medical problems, so many Marianne can’t recall.
Over the next several years, Marianne was Jeff’s primary caregiver, which left little time to care for Jonathan or herself. She battled severe fatigue and for an entire year wrestled with an unrelenting cough. The family relocated from their apartment in Clarkston to a ranch in Snellville so she wouldn’t have to climb stairs.
At one point Marianne was diagnosed with pneumocystis pneumonia, a fungal infection. Doctors wanted to hospitalize her, but she refused to go. Who would take care of Jeff and Jonathan? Her physician gave her antibiotics and steroids, and had oxygen delivered to her home. It was the early 1990s and photographs of Marianne from around this time show a woman on the brink of fading away but with a marathon runner-like distance in her eyes.
At one of her sickest moments, Marianne received a visit from a girlfriend who tried to bolster her sick friend’s resolve. She told Marianne to imagine dancing at her son’s wedding one day and embracing a sweet-smelling grandchild in her arms. Holding on to those images of future happy moments helped Marianne carry on.
By then, Marianne’s handsome, well-groomed husband had grown disheveled as he continued to decline. AIDS-related dementia began to gnaw on his sanity. As he became increasingly more unreasonable, the couple argued frequently. Memory loss set in, and Marianne would find herself repeating the same statement dozens of times over. Jonathan grew frightened by his father’s erratic behavior.
It’s all your fault, Jeff would moan at his wife.
Eventually Jeff moved into Haven House hospice. Marianne often visited him there until he died in 1996.
I’m next in line, Marianne thought.
Marianne got everything in order and signed all the appropriate documents, including one designating a guardian for Jonathan. That, she says, was the hardest of all.
Jonathan was 13 at the time and had already watched two siblings and a parent die. The thought of him losing his mother and becoming an orphan was devastating for Marianne.
“We relied on each other so much during those days,” said Marianne. “I think he resented having to grow up a little quicker than others, but he was always willing to help out with stuff I could not do. He needed me. I was all he had. And I needed him.”
The goal of watching Jonathan graduate high school was the carrot on the stick that kept Marianne going.
‘I could never, ever point a finger of accusation like, "You did this to us." I never did that.’
A safe haven
Grady Hospital’s Ponce de Leon Center is in a non-descript boxy, brick building just a doughnut’s throw from the flagship Krispy Kreme in Midtown. Established in the early 1990s, it offers primary medical care to the sickest of the sick HIV/AIDS patients, most of whom are poor and uninsured. Many of them are in advanced stages of the disease by the time they come here to receive a variety of services, including mental health services, substance abuse treatment and dental care.
Marianne first came to the Ponce de Leon Center not long after it opened. Her T cells, a type of white blood cell that plays an integral role in cell immunity, were at an all-time low. So she sought treatment at what continues to be the largest infectious disease program in the Atlanta area. For Marianne, it was the place to go.
She logged many hours in the center’s large waiting room where she paid close attention to the pediatric patients, whose young faces reminded her of Joshua Paul and Annalisa.
Nevertheless, it was a safe haven to Marianne, a refuge from a world that couldn’t comprehend her suffering, a place where caregivers weren’t afraid to touch her and where medical miracles were beginning to happen.
“The care that is given behind closed doors is what makes that place so special,” she said. “The caring touch, the time taken to listen to dreams and stories — whether sad or happy, a compliment given, encouragement, validation. If it were not for the staff there, I would probably have never made it.”
The mid-1990s saw a major breakthrough in HIV/AIDS treatment. Combination therapy — the administering of multiple complementary medications — was the first real hope for those battling the disease. With the arrival of protease inhibitor anti-viral drugs, AIDS patients began to do more than survive. They were beginning to thrive.
Jeff was too far gone to benefit from the new treatments, but Marianne began taking handfuls of these new medications under the care of her doctors at Ponce Center. Slowly, she began regaining her strength. By the late 1990s, she was hitting the gym and shedding unwanted pounds on Weight Watchers.
About the reporter
Jon Waterhouse has been a regular contributor to the AJC for 12 years. His work has appeared in Esquire, BlackBook and MTV.com. He also blogs for Graceland and Elvis Presley Enterprises, and periodically hosts and produces segments for the Elvis Radio channel on SiriusXM satellite radio. Jon served as host and producer of the award-winning “Pop Culture King Show” for six years on AM 1690 The Voice of the Arts in Atlanta and is working on a book about his family.
Finding love again
“When someone asks how long we’ve been married, we say, ‘We’ve been married 30 years, but only 15 together,’” said Darrell Swanson, whose barrel chest gives him the appearance of a former defensive lineman.
The same year Jeff died, Darrell found himself at loose ends. His wife had just divorced him and taken their five children with her. The restaurant where he worked in Texas shuttered. At a loss for what to do next, he packed his bags and moved to Georgia, where he had family.
Hoping to make new friends, he attended a singles group meeting at Lawrenceville Church of God in 1998. That’s where he first met Marianne.
“I had honestly thought I would never, ever get married again,” said Marianne. “I was out there about my HIV from the get-go. Everybody knew it, everyone in the church, everyone in my personal life. I thought, ‘Nobody’s going to want to marry a girl with HIV, so I just need to (get) used to being single.’ I was involved in the singles group, but not really looking for anybody.”
Darrell would prove her wrong. Drawn to Marianne’s enormous heart, he fell for her right away. He was astounded by her devotion to Jeff in spite of everything that happened, and he admired her love for Jonathan. Plus, she made some serious biscotti.
“Anything I could’ve asked for and wished for [in a woman], she was,” he said.
Marianne talked openly about the disease with Darrell early on. His reaction put her at ease.
“He didn’t really care about it.” Marianne said. “He’s never made HIV define me. He knew I had suffered all of this loss. That sorrow meant a lot and shaped me into who I am. But AIDS doesn’t define me. It never did.”
The Swansons wed in 2000. Darrell moved into the Snellville home Marianne shared with Jonathan and brought fresh life into it by knocking down walls, adding windows, laying tile.
The addition of a gas stove provides the focal point for the kitchen they designed together. It serves as the hub of Marianne’s culinary adventures featuring webs of pasta and her trademark cheesecakes. During warmer months they garden, growing bold red tomatoes that find their way into Marianne’s pasta sauce.
The pair shares a love of music, too. Chatting in their kitchen one day last month they talked about their favorite songs in a lively conversation punctuated by laughter and Marianne’s thick New York accent.
Then Marianne turned serious. For years she said couldn’t bring herself to sing the church hymn “Great is Thy Faithfulness.” She struggled with the line: All I have needed thy hand hath provided. But not anymore.
“I don’t understand why my two kids aren’t here, but I don’t have to right now. It’s almost like God’s saying, ‘You can’t have those right now; they’re with me. But here’s five more,’” she said, referring to Darrell’s children, whom they see often. “So now I can bellow it out. Great is your faithfulness. All that I’ve needed your hand has provided. All.”
Although she sometimes struggles with fatigue, Marianne’s health remains solid and stable thanks to her medication regimen — just four pills daily after breakfast.
“It’s a lot simpler than what I was doing maybe a year or two ago. I’m trying to hang around long enough to get it even simpler,” she said with a chuckle.
She has a successful career now, too. Back in 2002, when Jonathan left home for college, Marianne decided it was time to return to nursing. She knew a place that had an opening; it was a place she knew very well.
About the photographer
Curtis Compton joined the AJC as a photo editor in 1993 before returning to the field as a staff photographer. Previously he worked for the Gwinnett Daily News, United Press International and the Marietta Daily Journal. He has a bachelor’s degree from the University of Georgia and won a World Hunger Award for his coverage of the famine in Sudan.
Gift of empowerment
Dressed in a white lab coat, a brightly colored button with the letter “M” pinned to her lapel, Marianne walks the halls of the Ponce de Leon Center. For more than a dozen years now she’s worked as a nurse educator, informing patients on what the disease is doing to their bodies and how their treatments work.
Her first day on the job was surreal, she said.
“I just remember being scared to death and being really nervous, wondering if I still had the skills.”
She fell back into the nursing groove quickly and settled into a routine helping AIDS patients navigate the rocky road she had traveled herself. She was heartened to see the tides turn as more and more patients began to survive and flourish on the combination therapy treatments. Still Marianne watches a steady stream of new patients flow through the Ponce Center doors, many of them in their 20s.
“There are a lot of people putting themselves at risk,” she said. “They think, ‘Oh, HIV. If I get that, there’s a pill for it.’” Part of her job means reeling patients into reality.
When first-timers arrive, Marianne kick-starts the conversation with an ice-breaking chat and listens to their stories.
Many times patients are worried about revealing their diagnosis to family members because it means disclosing their sexual preference for the first time. Marianne will role-play the patients’ mothers to help them prepare for the conversations.
One day while she was collecting medical history on a patient, he looked at her and said, “You have three kids.”
Marianne’s eyes widened.
“How do you know that?” she asked.
“Your ring,” he said, pointing to her hand.
A trio of tiny stones line a thin band — an emerald, a topaz and a citrine — each representing the birthstones for Jonathan, Joshua Paul and Annalisa.
That line of conversation might swing open the door to Marianne’s own story. Maybe not. It depends on the patient.
Marianne often sees herself in her patients. Although HIV doesn’t consume her life like it once did, a patient might say something that triggers a memory that yanks her back to the past. When a client recently told her he was hesitant to tell his mother of his HIV diagnosis because she was busy taking care of his aging grandmother, Marianne remembered processing those same thoughts years ago.
Her primary goal at work is to give patients what the Ponce Center gave her: a sense of control and empowerment. Watching patients regain their strength and health is the greatest gift of the job.
“Their success is always my success,” she said.
In her tiny office space, Marianne surrounds herself with photographic evidence of her journey. She calls it her “wall of inspiration,” a hodgepodge of snapshots and portraits of beloved family members: the bronzed faces of her and Darrell on their honeymoon; a group shot of their collective kids from a road trip; Jonathan’s senior high photo.
On the wall facing the patient’s seat, a poster commands attention. A childlike drawing of a little girl scrawled in crayon shares space with the words: “I have AIDS. Please hug me. I can’t make you sick.” Patients probably assume the message is for them. In reality, the Pediatric AIDS Foundation gave the poster to Marianne and Jeff after Annalisa was born.
“I recently read how sorrow can be the plowshare in people’s lives that unearths things,” Marianne said. “You can choose whether you’re going to be bitter or better. It’s just a letter, an ‘i’ or an ‘e.’ Are you going to allow the situation to shape you and mold you? Or are you going to let it steamroll over you? I had to make a lot of those choices early on.”