SOUTH BEND, Ind. (AP) - Anna Norquist launches from her wheelchair, her new prosthetic legs quivering with each step down a straight line through her parents’ kitchen.
It is practice lap No. 1, exactly two years since the day that an ambulance rushed the gymnast to Indianapolis with a rare, nearly fatal - and still mysterious - case of toxic shock syndrome.
Lap No. 2. The singer Charlie Wilson, whom she fondly calls “Uncle Charlie,” comes on the smart speaker. He’s the same R&B artist whose concert she’d gone to in Chicago just before she fell ill with the bacterial infection that triggered toxic shock, requiring medical procedures that took all her limbs.
On this day, the tune loosens her face into a playful smile and moves her body into a relaxed but slight sway, as she concentrates on each tender step.
“That may be one of my best walks ever,” Anna says.
From behind, her brother Jimmy, 26, follows closely with her wheelchair. Ahead, her brother Patrick, 35, steadies the walker where she rests her only forearm and hand - her left one, which also is a prosthetic.
Jimmy and Patrick ditched jobs in Florida to become her full-time caregivers. Now they take turns sleeping on a couch by her bed, all of them living together in their parents’ home in South Bend because of what their parents had always taught them: “Family first.”
Peggy and Gordon Norquist watch their kids in a cathartic moment they call their daughter’s “Anna-versary.”
By the fourth of five laps, Anna lip-syncs to her favorite Wilson tune, “Life of the Party.” She adds a hint of dance to her step and plops down in her wheelchair with the smile that her family has fought to keep through two years of infections, setbacks and terrors.
They knew this much: The family could survive trauma only if they came together, even when they disagreed.
Anna knew persistence.
Until now, 32-year-old Anna hadn’t given any interviews to media outlets, as her mind still struggles to process the ordeal and what it means to lose her limbs.
Even on recent nights, her brothers say, she woke with phantom pain in her middle finger, or she said, “My left ankle is killing me.” Anxieties about the future race in her mind. Patrick has talked her through the wee hours of sunrise.
The end of the infections this fall marked a turning point that finally allowed her to walk with the prosthetics.
The future holds dreams of independence - a fully accessible house for the three siblings and a service dog that, among other things, could fetch her prosthetics and allow her to be alone safely. She wants a Doberman Pinscher, she says, “because they’re badass.”
She and her family know it could take more than a year.
It all started in a way that, Jimmy recalls, “felt so slow and so fast at the time.”
Anna, a 2006 graduate of St. Joseph High School, had competed in gymnastics throughout her youth, including at a national level, and later worked as office manager and coach at a gym in Austin, Texas, for three and half years, then coached at a South Bend gym for five months.
On Dec. 3, 2018, flu-like symptoms on the drive home from the Charlie Wilson concert led her to the emergency room at Saint Joseph Medical Center in Mishawaka. The family learned her condition was so severe that she’d die if she didn’t make it to a hospital with more advanced resources. So she was loaded into an ambulance, headed for IU Health Methodist Hospital in Indianapolis.
“That was the longest three and a half hours of my life,” Jimmy says.
Anna had been infected with the bacteria Streptococcus A, generating toxins that threatened systems throughout her body. This toxic shock syndrome came with a “very high risk of dying,” says Dr. Whitney Pratt, who specializes in physical medicine and rehabilitation at IU Health in Indianapolis, where she runs the amputee clinic.
Doctors needed to preserve blood flow to Anna’s heart and brain - to save her life, Pratt says. But it meant giving her medications to reduce blood flow to her extremities, causing her limbs to die.
It’s unclear how she was infected, Pratt said, though the use of tampons - often a speculation with toxic shock - was ruled out. Generally, the syndrome has been linked to skin burns and cuts, surgeries, vaginal products, and viral infections like the flu or chickenpox.
“She was so swollen you couldn’t tell who she is,” Jimmy recalls.
The brothers abruptly departed the life they’d known. Jimmy had been nestled in Florida for two years, Patrick for 11, where they worked as salesmen, representing tree-trimming contractors, and lived down the street from each other.
Soon, they were staying in the hospital with Anna because she needed someone with her around the clock while she lay in a chemically induced coma. They sang in case she might hear. At one point, she opened her eyes and cried but couldn’t speak.
After the coma, Anna would stay at IU Health hospitals in Indianapolis, her brothers at her side, until the three of them moved into their parents’ two-story home on South Bend’s north side in March 2019.
Their younger brother, Bryan, who’d been with them in the hospital, returned to Florida to salvage college studies that the illness had derailed.
It would launch Anna’s many car trips back to Indianapolis, often three times a week, for therapy and follow-up care.
Meanwhile, Anna’s fellow gymnasts, classmates from St. Joseph High School and other friends held fundraisers to help with the medical bills.
News outlets around the country and even in England reported on Anna’s case. A new Facebook page, Anna’s Army, would soon be on its way to 3,100 followers, many of them strangers inspired by her progress.
Dr. Pratt met Anna a month after she was hospitalized. Outside of Anna’s room, she examined pictures of the amputations. Anna still had both knees, but Pratt was convinced - both then and for months to come - that the left one was unsalvageable, telling the wound therapist, “She needs to get a higher-level amputation.”
Anna would resist that, with support from her mom, knowing that having the knee would give her more mobility in the future.
“It is much, much, much more difficult to use above-knee prosthetics,” Pratt says.
But the decision to save the knee would lead to ongoing infections that were difficult to heal, thanks to the ample skin and fat. Surgeries continued until this spring while her pain level seemed to rise.
This past March, Anna had just been released from one of the surgeries when, while sipping coffee at the kitchen counter, she fell out of her wheelchair. Gordon, her dad, found her on the floor with a big lump on her head, wondering if she was dead because she’d stopped breathing. Peggy admits she was “screaming.”
Roused from sleep, Patrick recognized it as a seizure because he’d seen it in his prior work marketing for mental health services. After an ambulance ride, she suffered another seizure in the emergency room. One doctor, Patrick says, felt that anesthesia may have been a factor in the seizures, though Anna’s high stress levels could have been too.
Pratt had long ago ordered Anna’s right prosthetic leg, but Anna wouldn’t use it, frustrating the doctor because her lack of movement could stiffen her muscles, making it harder to stand. But Anna wanted to wait until she could use both legs.
The left one had to wait. The skin had to heal before it could lodge into the prosthetic’s socket because the pressure could irritate the lingering infection.
Wound care became critical. Patrick learned the delicate art, as prescribed by the wound therapist - sending photos and asking questions via FaceTime - and taught the rest of the family, from the gentle cleaning to the strips of medical fabric that spur new skin to grow.
Pratt says the “meticulous” care paid off by September, with the infection so tiny that it was time to don the prosthetic legs.
“Twenty months of doubt and 23 surgeries later, she finally got her legs,” Patrick posted on Facebook. “And when she stood for the first time, I could not hold back my tears.”
Pratt says Anna will continue to face the risk of skin breakdown at the prosthetic’s socket, especially because she has so much scar tissue. To avoid that, the sockets need to fit the skin perfectly. They will need to be changed over time as the limb morphs with muscle loss and age.
“She’s stubborn; we say in rehab that’s a good quality,” Pratt says. As for Anna’s progress on prosthetics, the doctor says, “She’s actually rocking it out.”
She’s progressing faster than her physical therapists expected.
Anna’s mood has flipped “100%,” Pratt says, adding, “She went from being an understandably miserable person that didn’t see a future for herself.”
“I never imagined it,” Anna says about taking steps. Sitting in her chair, she pumps her lower legs up, smiles and adds, “These legs got me going.”
She believes her residual strength as a gymnast has helped in visits with the prosthetist and physical therapists.
A year ago, Anna caught a tennis ball with the prosthetic hand she had received that fall. More recently, she’s been climbing stairs. When she stepped with her legs into a car in November, she recalls, “That was really fun.”
Just more than a week after her Dec. 3 “Anna-versary,” she stayed overnight at a friend’s home without her brothers. And she’s been walking without the walker, just a brother at her side.
Asked what she’d say to others who try to move beyond a disability, she replies: “I don’t want to say try, but you can do it. There’s no one way to do this.”
Today, the brothers swap duty every 24 hours at about 4 p.m., and they help Anna to bathe, dress, fix her short blond hair, put on makeup, take her medications and do most daily activities, plus medical and therapy appointments. They help don the big hoop earrings that she likes and the burgundy watch she puts on her prosthetic arm.
Their parents can pitch in because they’re working at home more during the pandemic.
The brothers try to keep Anna laughing, like offering high-fives when her prosthetic arm is off. At Anna’s suggestion, they once carried her upstairs in a laundry basket.
Goofiness and music bridge them over tough waters.
“There are times when you hit your limit,” their mom, Peggy, admits. “It has not been perfect. There are times when we disagree, we’re mad and scared. It’s intense. Then you have to get up (the next day) and get along. You get in your corner and come back when you’re good.”
Jimmy credits his dad, Gordon, an entrepreneur, with being “extremely level headed.” (Patrick adds, “and funny.”)
“He slows everything down,” Jimmy says, “brings us back to Earth and says, ‘This is why we do this.’”
Peggy, a self-employed dietitian who’s completed 34 marathons in 26 states, is a “powerhouse,” Patrick says. “She’s always the first one to go to bat for any one of us. She gets sh— done.”
“It brought us closer together as a family,” Gordon says.
“We’re a team,” Anna says. “A really good team.”
To blow off steam, the family built a recording studio in the basement where the brothers and a few friends jam as a band twice a week.
“Our family survival depended on those boys having that room,” Peggy says.
The house where Anna, Jimmy and Patrick dream of living would have to be fully customized for her. So would the car she hopes to drive one day. She’s dreamed of raising llamas, too, but for now the goal is to raise money through a GoFundMe campaign and gain financial stability, along with stability on her new legs.
Anna still watches gymnastics on TV and stays in touch with her gymnast friends. Eventually, she’d like to return to the sport as a judge.
“Anna wants her own life,” Patrick says of his sister.
“I think she helps me,” Jimmy says, “more than I help her.”
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TOXIC SHOCK:
Toxic shock syndrome is a rare, life-threatening complication from bacterial infections. It often stems from toxins caused by Staphylococcus aureus (staph) bacteria, but it may also stem from group A streptococcus (strep) bacteria. The syndrome can affect anyone, including men, children and postmenopausal women.
RISK FACTORS: Skin wounds, surgery and tampons and other devices, such as menstrual cups, contraceptive sponges or diaphragms.
SYMPTOMS: Sudden high fever; low blood pressure; vomiting or diarrhea; muscle aches; seizures; redness in eyes mouth and throat; a rash (like a sunburn), especially on palms and feet.
Call a doctor immediately if you have symptoms, especially if you’ve recently used tampons or if you have a skin or wound infection.
Source: Mayo Clinic
SEEKING HELP: Anna’s family has established a GoFundMe page to help her find a house and live independently.
Go to www.gofundme.com and search for “Anna Norquist.”
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Source: South Bend Tribune
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