In August 2016, Maggie Rath first began to worry about her health. She informs Shape that her left pinky had suddenly grown tight, painful, and oddly bent. Her primary care physician and a rheumatologist put the strange symptom down to arthritis or carpal tunnel syndrome when it didn’t go away.
But the medications she started taking on prescription for those issues didn’t work. Rath, who was 29 at the time, claims that over the course of the following few weeks, “my other fingers began to flex in these strange, ridiculous, alien-like ways.” “I was just living with being uncomfortable all the time, but eventually it just became terrible,” she said. She recalls that the unidentified symptoms then expanded to her toes and calves, which were so tight that she was unable to wear heels.
By the beginning of September, Rath, an enthusiastic CrossFit competitor, had consulted neurologists who gave her a muddled diagnosis that included multiple sclerosis, ALS, and Parkinson’s disease among other conditions. She endured four rounds of chemotherapy, intravenous immunoglobulin infusions (IV antibodies from healthy donors are administered to keep your immune system from attacking your body), and numerous drugs over the course of the following eight months.
However, nothing was operating. Rath adds, “I simply remember being incredibly angry that I had gone to six different physicians and nobody could figure me out. “Once test results were available, the doctors would practically fire me and refer me to someone else after learning my tale or seeing it. I felt like I was being thrown about like a flyer.”
Rath’s doctors have yet to identify the precise origin of her problems, despite their initial findings.
During that time, Rath’s disease spread to her legs, causing her lower body to change into what she likens to a mermaid’s tail: her feet bowed inward, and her toes curled and wrinkled under her feet. She took her final steps on her wedding day and with her own two feet on April 8, 2017, exactly nine months after her first symptom appeared. I walked down the aisle, but the next morning I was unable to walk, she claims.
Rath claims that the quick deterioration of her legs had a mental toll. She continues, “I really lost all sense of purpose.” She pondered the cause of her mysterious disease, speculating on various explanations in an effort to make sense of her predicament. Rath claims that whichever conclusion she eventually reached, she was almost always furious with the world. “I finally just kind of accepted it one day and told myself, “You’re not intended to be figured out.” You simply have to accept it, “she claims.
Rath claims that in 2018 she made the decision to “live her life as is” (i.e., without any treatments) and to gradually return to CrossFit. She explains that she witnessed firsthand how people with disabilities were able to take control of their life through the sport. Rath adds that instead of dwelling on the illness that had rendered her wheelchair-bound, she once again engaged herself in the pastime she loved. She trained three times a week for several years, learning how to lift a barbell with wrist straps and hooks and perform exercises that were often performed while standing while seated. She even participated in Wodapalooza , an annual Miami CrossFit tournament. “”I don’t need to feel sorry for myself anymore,” I thought. Yes, life stinks, but it’s time to move on and find the best way to live my life with the resources I have available “Adds she.
It may seem like the ideal happy ending—a triumphant return to a physically demanding sport—but Rath’s story was far from ended. By chance, a researcher at MIT came across Rath and suggested she watch a video by TED Talk by Hugh Herr , a man who lost both of his legs in a climbing accident and now uses and develops bionic limbs that resemble natural limbs at MIT’s Yang Center for Bionics. Rath had written a profile about her health journey for Shape in 2019 that led to the researcher’s discovery of Rath. Unexpectedly, the same evening, Rath’s retired doctor uncle sent her the exact same video. I need to learn how to crush it too, I was just reading about this guy and seeing that he’s crushing it, she says.
Rath started researching bionic prosthetic limbs and amputations below and above the knees right away, just like Herr had done. What she discovered ultimately prompted Rath to make a choice she claims she had been debating for years: “chopping” her legs off. “I cut them off with no issues. They would never serve me again, and doctors would never administer a miracle drug that would enable me to stand up and walk once more. I then began to seriously consider the question, “What if I underwent the entire process, for real?””
MARK RATH REGARDING THE DECISION TO HAVE A BILATERAL LEG AMPUTATION I snipped them off with no issues. They wouldn’t ever serve me again, and they wouldn’t ever provide me a miracle cure that would enable me to stand and walk once more.
Maggie Rath on choosing to have both of her legs amputated Rath contacted other specialists at MIT and Brigham and Women’s Hospital who had been doing studies on a novel operation known as the Ewing Amputation a week or two later. According to information issued by the hospital, this kind of amputation keeps the regular signaling between the muscles and brain, giving patients the impression that they are operating their real leg rather than a prosthetic. She was pleasantly surprised to hear back in just two hours. Rath spoke with numerous medical professionals in person to ensure that amputation was the last but best option for her illness, and she communicated with the study team through Zoom over the course of the following few months to describe her experience and her aim of being wheelchair-free.
Rath underwent surgery for bilateral limb amputation scheduled for the following March by November 2021. In order to make sure her body was as strong as possible for the treatment and recovery period, she spent the following five months practicing CrossFit six days a week. According to Rath, she also asked advice from a fellow bilateral amputee who had recently undergone the Erwing surgery about how to prepare and what to expect.
Rath was aware that her operation might have some dangers. The agony Rath experienced in her feet, shins, calves, and Achilles tendon might be eliminated by amputating her legs below the knee, but Rath recalls her doctor cautioning her that there was a good risk it may worsen, causing the still unidentified condition to “target” other muscle groups. Rath, however, chose to take a chance since she had visions of “being vertical” once more and entered her surgery with “zero nerves,” according to Rath. Rath became the first woman in this particular research group to electively amputate both legs at the same time following the nine-hour procedure, according to Rath.
Rath was moved from her hospital room to a Boston rehab center a week after her life-altering surgery. designed to keep residual limbs and knees were safeguarded and correctly positioned while recovering, according to the woman, who began physical therapy while wearing immobilizers, a specific form of leg brace. Ironically, April 8 turned out to be a significant day in her life once more. “The day I married my spouse was the last day I ever walked,” she claims. And now the quest for the day I first started walking again begins on my fifth anniversary.
Rath was transferred from the rehab center to her apartment across the street after just two weeks, which she attributes to all of her CrossFit sessions and a cheerful outlook. Rath received her first set of prosthetic legs by the end of May, just in time for her 35th birthday. For the first time in five years, she claims, she stood up. “There was a total sense of emancipation. The happiest person was me.”
Rath currently works two and a half hours a day, five days a week, conducting physical therapy at home in Virginia, but she doesn’t mind the workload. She claims that as a result of all these sessions, she no longer has to worry about her wheelchair running out of battery when she wants to go shopping or spend additional time getting it into the car; instead, she can simply slip on her legs and go out the door without any hassle. (FTR, Rath does not yet characterize herself as a speed walker, but she also does not describe herself as a “baby giraffe tumbling down”).
Rath will return to MIT in October to test out her first bioengineered legs, which will have separate toes that she should be able to control thanks to the ground-breaking operation. In essence, she continues, “I can still feel my toes, and if you asked me to move my big toe right now, I could.” “It will feel like I have five actual toes once I put on the prosthetics. I would be able to dance and wear pointe shoes if I wanted to be a ballerina.”
Rath is determined to accomplish everything with her new limbs, whether it is returning to CrossFit or trying out new adapted activities like snowboarding or swimming, regardless of the sort of prostheses she is wearing. And she says that she intends to compete on the international level one day using the talents she develops while also getting to know some amazing athletes. The disabled community is my community, and that is who I am, says Rath. “I never thought I would say this,” she adds. I believe it would be foolish of me to pass up the opportunity to network with those who share my outlook on life and adaptability. Up next: Bethany Hamilton, a surfer Creating Inclusive Environments for Adaptive Athletes: The Vital Role
