MANSFIELD – Rachel Barr’s life changed dramatically when she lost her leg from neurofibromatosis, but it’s never stopped her from doing the best she can with everything she still has.
When Barr saw a post on Facebook from Richland Source about the Strive to Thrive contest, she did not hesitate to enter.
“I don’t think I may have ever really processed it (losing her leg) because I just kind of get up and know I have to keep going,” she said.
Barr had her amputation in 1993 after having complications for years while in high school when she began to feel pain in her right knee. At the same time, she’d also been doing weight training.
“My parents just said to cut back,” Barr said. “They didn’t take me to the doctor or anything and then flashforward to 1988-1989, I stood up one time and fell down, and my boss was standing right in the doorway.”
After taking herself to the doctor, she was told that they couldn’t find anything because they only checked her knee. Eventually, the pain worsened for Barr and then the doctors discovered she had a tumor in her leg. In addition to that, Barr also found out she was pregnant with her first child. And at only 23 weeks, Barr had her prematurely.
Barr went twice a day for radiation in 1989, once in the morning and later in the day after visiting her daughter in the NICU.
“The radiation caused a lot of damage,” Barr said. “It gave me a third degree burn and then in 1990 we found that the cancer had spread to my lung and my back and I tried to do chemotherapy. I did two rounds of chemotherapy and, on the third one, I quit.”
In 1991, after receiving radiation on her left lung and back, Barr’s doctors discovered that the radiation killed the circulation in her leg. Trying to reverse the damage, Barr went through four or five femoral bypass surgeries to save her leg. Near the end, they even took arteries out of her arms to place into her leg, but they didn’t take. It was also around that time Barr discovered she was pregnant with twins.
“It was either try and save the leg again or try and save the babies, and I went home in tears because my doctor didn’t want to do the surgery. He called me up and said if I had been there at a certain time he would’ve done it,” Barr recalled.
Originally, Barr was sixth in line for the surgery, but to her surprise, all of the patients before her received word about her condition and decided to give up their spots so that she could be first in line.
When Barr delivered her twins, immediately afterward her doctors discovered she had an infection in her leg and needed a debridement (removal of damaged tissue or foreign objects from a wound).
Barr lost her leg below the knee on Feb. 3, 1993 during a surgery where she had to be awake. Today, she still has PTSD from mini-circular saws.
In the January and February months, Barr finds it the hardest to think back to the day she lost her leg, as well as when she almost decided to turn off the life support machine for her first-born.
“I didn’t tell anyone until she turned 30 last year. I sat down with her and her dad and said, ‘you guys don’t realize how close I was to taking my own life if you (her daughter) hadn’t made it,” Barr said.
Barr has gone through many revisions and debridements—her last one being in 2006—since losing her leg. Her amputation has now reached to her upper thigh.
“They (the doctors) think that all of the damage was in the radiation field, so that’s why they had to go up so far,” Barr said.
Despite all of the setbacks and circumstances in her life, Barr continues to get through life the best way she can and challenges herself. She’s involved in church groups, online forums, owns her own blog and is currently working to get in shape through the Strive to Thrive contest along with a weight loss support group she joined.
“If I try and say, “OK, I’m going to do better than person A and I don’t, then it’s going to be like I failed. I have to set goals for me,” she said.
With the Strive to Thrive contest, her many support groups and influences such as her grandmother and step-dad who inspire her to be the best person she can be, Barr uses that as a pillar to lift herself up.
“People look at me and say, ‘poor you,’ but no, not poor me,” Barr said. “There’s people that have more things going on than I do and I’m grateful.”
