Lisa Brown’s fight for survival lasted six long years.
During that time, people often assumed that the rail-thin woman from Brookfield, Wisconsin, suffered from a severe eating disorder.
“People would say I should eat a burger, and they’d ask me why I was starving myself,” Brown told People magazine. “It was very hard to hear, but I knew the truth.”
The truth was that the onetime model was being slowly starved to death by superior mesenteric artery syndrome (SMAS), a rare digestive system disorder in which a portion of the small intestine is compressed, obstructing food from passing through, according to the National Institutes of Health.
On Saturday – after numerous therapies, surgeries and visits to specialists across the country – Brown, whose inspiring struggle for survival went viral in 2015, died at her home in Wisconsin.
The 34-year-old, who stood 5-foot-10 and weighed 140 pounds when healthy, told People magazine that she had dropped to 77 pounds several days before she died. Family members said she was surrounded by loved ones at the time of her death.
“It’s my time to go,” she told the publication. “I’m done fighting.”
Her husband, Patrick Brown, writing on a GoFundMe Page that he started to help his wife pay her medical bills, said Lisa devoted her final years to helping raise awareness about SMAS. He referred to her as “the most amazing woman I have ever met.”
“Today marks the day where my best friend, my teammate, my wife is finally free from suffering and pain,” he added. “She went to heaven peacefully with her family by her side. I would say an angel got her wings, but she was and is more than an angel.”
Brown’s fight began without warning when she was 28. Until then, she had never worried about her weight and led an active life that included horseback riding, going to the gun range, and having a jewelry business on Etsy and a large group of friends.
“I think she was just a born teacher,” Brown’s mother, Patricia Neuhauser, told The Washington Post. “She loved modelling and would choreograph fashion shows and teach people about modelling. She was also a substance-abuse counsellor and enjoyed helping people and teaching them through her work.”
Neuhauser said her daughter began to notice that each time she ate, she felt full more quickly than usual. After awhile, tight clothing became loose, and her pink sapphire wedding ring slipped off. By the time she weighed herself, she was shocked to find she had dropped from 140 to 112 pounds, Brown told People magazine in 2015.
“It was like my ability to eat quantities had shrunk and shrunk, until eventually I couldn’t eat anything,” Brown told People, recalling that she began to suffer from severe abdominal pain and debilitating nausea around the same time. “I would be in tears from the pain and so angry because it didn’t make any sense.”
As her health worsened, and people began to assume she was suffering from an eating disorder, Brown turned to doctors in an exhausting search for answers. She said she was “passed back and forth” between specialists who performed a litany of gastrointestinal tests, such as gastric imaging, endoscopy and colonoscopy, according to Good Housekeeping.
Despite visits to numerous doctors, at least one of whom hopelessly prescribed her acid reflux medication, Brown’s weight continued to plummet.
“Time kept passing and passing,” she told Good Housekeeping. “It was just insane – and I ended up with no answers.”
Her mother said there were even some health professionals who didn’t believe she was actually suffering from SMAS.
“There was a doctor that thought she had an eating disorder and who didn’t believe the disorder was real,” she said. “The disorder is so rare some doctors don’t know about it, but we were finally able to find health professionals with an open mind.”
A measure of hope would finally arrive in December 2013, when a gastroenterologist at Froedtert Hospital in Milwaukee noticed in a former CT scan and angiogram that a portion of Brown’s intestine was pinched, according to Good Housekeeping.
“She could see the pinched area of my intestine very clearly in the scan and the actual doctors reports,” Brown, then 32, told the magazine. “There were also notations by other doctors about the pinch, suggesting further investigation for superior mesenteric artery syndrome. But nobody ever told me, which is frustrating. Now, I tell people to be their own advocate and check your own medical records.”
She was eventually diagnosed with SMAS.
After undergoing corrective surgery designed to reroute food around her blocked intestine, Brown’s health improved temporarily before the vomiting and weight loss returned. It was a blow to her health as well as her marriage, which was on hold for years: Instead of spending more time with his ailing wife, Patrick Brown was forced to work long hours at his engineering job to cover the couple’s steep medical bills.
“What is it like to watch this?” he told Good Housekeeping. “It’s the hardest thing I’ve ever had to go through. It’s constantly on your mind that your wife is dying but you need to pay the bills. I worry daily, leaving and not knowing what could happen.”
In May, Brown flew to Jackson Memorial Hospital in Miami in hopes of receiving an intestinal transplant, according to People. It was a last-ditch effort to keep her alive, but when she arrived, People reported, doctors informed Brown that she would need to gain 20 pounds to have the surgery.
“I knew then and there I had no shot,” she told People. “I couldn’t take it anymore.”
Throughout her illness, even in the darkest periods, Neuhauser said her daughter didn’t complain about her condition. Instead, Brown made light of situation by dressing up the pole that held her feeding bag in various outfits or used her hospital stays to connect with the people around her, she said.
“She would make jewelry for the nurses and the housekeeping staff and would make people personalized cards that she decorated,” Neuhauser said. “She was very active on an SMAS support board counseling others and doing research on the disease.”
Brown spent her remaining months of life in hospice care, and her husband took a medical leave from his job in December to spend as much time as possible with her, her mother said.
“The hardest part is just sitting here watching her suffer,” Patrick Brown told People. “But I promised her ‘in sickness and in health.’ I was just hoping for the health.”
She tried to savor each day by spending time with loved ones or by savoring small moments, like visiting her favorite coffee shop with her mother, People reported.
“I miss the things we used to do everything together because we are so close,” Brown told People. “The fun things that a lot of people take for granted. Stopping at the grocery store or anything like that.”
Neuhauser said that before her daughter died, she was able to make detailed plans for her own “end of life celebration.” She said her daughter requested that Enya and Bon Iver be played and the food include items she was able to enjoy at times during her illness: soup, mini cupcakes and muffins.
Perhaps most importantly, Neuhauser said, her daughter demanded that nobody could wear the color black.
Neuhauser said her family has been devastated by her daughter’s death, but they take comfort knowing that their loved one is no longer in pain. They hope her story reaches others who may be struggling with SMAS but don’t realise they have the disorder or parents who assume that their child has an eating disorder.
In their small community, Neuhauser said, people were almost always kind, but on occasion, someone would come up to Lisa and tell her that she needed to eat more.
“Lisa would always stay calm and tell them she had a serious disease,” her mother said. “They’d apologise, and she would use the experience as a way to educate people about SMAS.”
“She didn’t want to hide her illness, and I think she’s still educating people even though she is no longer here,” Neuhauser added.