Adaptive Athlete Maggie Rath on Choosing Limb Loss to Walk Again
Sometimes, letting go of something is the key to gaining what you want. In Maggie Rath’s case, the decision to amputate both legs came from her desire to walk and do CrossFit again. It wasn’t an easy decision, but it was necessary.
Rath’s journey towards elective amputation began in August 2016, when her left pinky finger became stiff, curved, and achy. Her rheumatologist and primary care doctor diagnosed her with carpal tunnel syndrome or arthritis. However, despite taking the prescribed medications, Rath’s situation only worsened.
Over the next few weeks, Rath’s other fingers bent in alien-like ways, and her mysterious symptoms spread to her calves and toes. Her calves became so tight that she couldn’t put her heels on the floor.
By early September 2016, Rath consulted various neurologists and was diagnosed with different disorders, including ALS, multiple sclerosis, and Parkinson’s. Rath received countless medications, four rounds of chemotherapy, and intravenous immunoglobulin infusions as treatment for her various diagnoses. Still, nothing worked.
Her doctors couldn’t figure out what was wrong with her, even as her illness progressed to her legs.
Image: Maggie Rath / Instagram
Nine months after the first symptom showed up, Rath walked on her legs for the last time. It was April 8, 2017—her wedding day. The next day, she woke up and discovered she couldn’t walk anymore.
The rapid degeneration of her legs affected her mental health. She dwelt on the series of events, making her angry at the world around her. But one day, Rath decided to face the cards she was dealt with.
In 2018, she decided to live her life even without treatment. She gathered strength and inspiration from other people with disabilities who were able to live their lives again through CrossFit. Rath decided to ease into the sport again, training three times a week and learning how to perform exercises that were typically done standing while seated.
A new hope
Although returning to the sport she loves seemed like a good happy ending for her story, Rath found hope again in 2019 when a researcher at MIT reached out to her after reading her story on Shape. The researchers suggested she watch a TED Talk by Hugh Herr. Coincidentally, Rath’s uncle, a retired physician, sent her the exact video that night.
After researching above- and below-knee amputations and Googling bionic prosthetic limbs, Rath decided to amputate both legs. To start the process, she reached out to other MIT and Brigham and Women’s Hospital experts who had been conducting studies on a new procedure called the Ewing Amputation. This surgical technique maintains the normal signaling between the brain and the muscles, so patients will feel like they’re still operating their biological limb, not a prosthetic limb.
The Ewing Amputation maintains the normal signaling between the brain and the muscles, so patients feel like they’re still operating their biological limb, not a prosthetic limb.
Over the next few months, Rath discussed her story and goals with the Ewing Amputation research team via Zoom. She also met various medical professionals to ensure that amputation was the last—but best—choice for her condition.
The amputation
Five months before her bilateral leg amputation in March 2022, Rath prepared for the surgery by doing CrossFit six days a week. She wanted to ensure her body was as strong as possible for the amputation and the following recovery period. She also asked for advice on what to expect and how to prepare from another bilateral amputee, who had undergone the Ewing procedure two years before.
Rath was also made aware of the risks associated with her procedure. Although amputating her legs below the knee could eliminate the pain she felt in her calves, shins, Achilles tendon, and feet, there was also a good chance it could be aggravated. Amputation could cause the mysterious condition to “attack” other muscle groups.
However, Rath held tight to her dreams of standing again. She decided to take the chance. So, after nine hours in the operating room, Rath became the first female in the research group to amputate both legs simultaneously.
Rath began physical therapy in a rehab facility in Boston within a week of her amputation. Rath wore immobilizers during her program. The immobilizers are a type of leg brace that keeps knees and residual limbs properly positioned and protected while healing.
Standing again
For the first time in five years, Rath walked again on April 8, 2022. Her recovery was fast, spending only two weeks at the rehab facility. Rath credits her rapid improvement to her positive mindset and CrossFit workouts. And by the end of May 2022, she received her first pair of prosthetic legs on her 35th birthday. She described what she felt at this moment as “feeling liberated.”
As of this publication, Rath still undergoes physical therapy for two and a half hours a day, five days a week, in her home in Virginia. And before 2022 ends, she will have already tested her first bionic legs at MIT.
Rath is determined to do everything she can with her new prosthetic legs, from doing CrossFit to trying new adaptive sports like snowboarding and swimming. She also hopes to meet and compete with other incredible adaptive athletes worldwide, as well as learn how to make the most out of her life from them.
Although things are looking up for Rath, her doctors still don’t know the cause of her mysterious symptoms.
