It had been nearly half of a decade since Lisa Brown began a battle with her own body when her mother, Pat Neuhauser, walked into the kitchen and found Lisa acting strangely.
“She was in the process of hooking up her pain pump and I was reading my book and she was in the kitchen for the longest time standing by her pump,” Pat said. “I went in there and she didn’t answer me. She just kind of went into a trance.”
It was the beginning of the end of Lisa’s brave battle with superior mesenteric artery syndrome, a rare disorder that makes patients unable to retain body fat.
In the summer of 2012, Lisa Brown was a normal, healthy woman living a normal life with her husband of two years, Patrick. She weighed approximately 125 pounds.
It was that summer that she found herself having difficulty eating and keeping food down. An initial consultation with her doctor led to over-the-counter medication for acid reflux, but Lisa continued to struggle.
By December of that year Lisa was having trouble filling out her clothes. She didn’t own a scale, but by that winter, she weighed herself at her parents’ house and was stunned by the number staring back at her: 112.
Lisa and her family began to desperately seek doctors and answers. Eventually, a gastroenterology specialist at Froedtert Hospital recognized her symptoms and pulled up an angiogram scan.
Superior mesenteric artery syndrome, or SMAS, occurs when two arteries located in the abdomen pinch a portion of the small intestine, resulting in food not being able to drain from the stomach. The disorder is rare enough that Lisa found herself often having to explain it to her own doctors.
Prior to SMAS, Lisa had struggled with pre-existing conditions that made her more vulnerable to SMAS including scoliosis and Marfan syndrome, a mitochondrial genetic disorder which causes a person to have a thin frame.
By spring 2015, Lisa Brown weighed 86 pounds.
Eventually, local media helped to shed some light on Lisa’s struggle, which led to her first visit at a Cleveland clinic that specializes in treating SMAS.
Much of Lisa’s life consisted of trips back and forth to Cleveland, but in her spare time, she made sure that her disease didn’t stop her from living.
For much of her time fighting against SMAS, Lisa found solace in helping others who were also struggling with the disorder.
While being confined to her home for most of the day due to having to be fed by tubes, she was a permanent fixture on Facebook groups and online forums for people suffering from SMAS or seeking information about the disease.
“We’re so incredibly proud of her for advocating as much as she did,” Pat said.
The level at which Lisa touched the lives of others around the world with SMAS was on display when her family hosted a celebration of her life Jan. 28.
“One of the gals that knew Lisa from the SMAS board Lisa had told her, ‘You have to get to the Cleveland clinic.’ She told them all the medical team’s names,” said Jack Neuhauser, Lisa's stepfather. “She went and the procedure was a positive for her. She was at Lisa’s celebration.”
“They came to her celebration of life and the mother said ‘It’s because of your daughter that I still have my daughter,’” Pat said.
Other well-wishes included another fellow SMAS patient who had written a song to commemorate Lisa’s life. Patrick also received a card from someone in New Zealand who wished to express their condolences.
“She touched so many peoples’ lives,” Patrick said.
At this time last year, Lisa and her family had been searching the country for a method by which they might be able to obtain a small intestine transplant.
The clinic in Cleveland was out of network for Lisa and her insurance would not cover the procedure.
The search led them to the University of Miami transplant center, but soon, Lisa had seen enough.
“That was in May. It was sad going in there because it just seemed like a sad place. When she saw all the people waiting around she just said ‘I don’t want my life to be like this. That’s no life,’” Patrick said. “We tried to keep an open mind, but they also told her she would have to gain 20 pounds in order to get a transplant and that wasn’t going to happen.”
By September, Lisa was undergoing hospice care.
“It was just to get her symptoms somewhat taken care of,” Patrick said. “It was her thing, she would say, ‘No, it doesn’t mean I’m dying. I’m just taking care of my symptoms.'"
In the months that followed, Lisa’s condition continued to worsen. By December her husband decided to take off of work in order to spend as much time as possible with his wife of over six years.
“We went from praying to find a medical team to help her to find a surgery to just towards the end that the good Lord would take her because she was in so much pain,” Pat said. “But even though she was in so much pain, she would never complain. Never.”
“She tried to keep a positive attitude, but she was just getting tired of it all,” Patrick said. “It wasn’t that she was giving up, there was just nothing left to give.”
On the afternoon of Saturday, Jan. 21, Pat walked into the kitchen and found her daughter struggling.
Pat called Patrick and Jack and Patrick called Lisa’s nurse.
“The nurse came over and checked her vitals and said her blood pressure was falling and her heart rate was falling and this was probably it,” Pat said.
True to her spirit throughout her battle with SMAS, Lisa wouldn’t let it have the last laugh.
“I bought her a smart TV for the bedroom and she used it once. She refused to just lay in bed all day even though she was in so much pain,” Patrick said.
“That last day, when I saw she was in stress, I said, ‘Why don’t we go into your room?’” Pat said. “She wasn’t talking, but she refused to lay in bed. So we went to the couch.”
For the next few hours, Lisa remained conscious but unable to speak. So her loved ones did the talking.
“Jack and I had both prepared a letter for her and we each read out respective letters to her and she would smile,” Pat said. “I know she was comprehending it because you could see her smile and one time she had a tear in her eye.”
Lisa Brown died at the age of 34. She had been born in Brookfield Oct. 30, 1982 and graduated from Brookfield East High School in 2000.
What you leave behind
The Neuhausers and Patrick Brown say that once they have time to recover from their loss, they would be more than happy to continue to champion the fight against SMAS, beginning with raising awareness about the disorder.
“We want people to know that if they’re sick and the doctors are telling them there’s nothing wrong, not to give up. Lisa went undiagnosed for a long time,” Pat said.
“One doctor told her, ‘You have an eating disorder,’” Jack said.
In the years to come, Patrick has talked about possibly writing a book to tell his wife’s story. He hopes that the funds from that book might be able to help start some sort of SMAS foundation.
The portion of Lisa’s life story that she personally was capable of writing may be at an end, but there are many around the world who will carry on her legacy.
“We just want people to remember her for how she fought, not only for her own life, but also for other people's lives,” Pat said. “She was so brave.”