Anneliese Williams, 22, lies in a hospital bed for the fourth day in a row. She can’t talk louder than a whisper but uses her breath to say she can’t wait to get back to CrossFit.
This stint at Johns Hopkins in July is not Williams’ first extended hospital stay. The Indiana native spent months in a hospital last year after developing Guillain-Barre syndrome, a rare neurological disorder in which the immune system attacks the nervous system.
When Guillain-Barre occurs, it’s often after an infection. Doctors told Williams they think a bout of COVID-19 in January 2022 triggered the syndrome, which can cause numbness, weakness and sometimes paralysis.
In Williams’ case, numbness and weakness in her feet and ankles progressed into paralysis from her chest to her toes. There were times last year when breathing support and feeding tubes kept her alive.
“There became no real distinction between day and night, and it just felt like this kind of abyss of time,” Williams said.
When she was released from the hospital, she was a full-time wheelchair user.
Williams described feelings of hopelessness that accompanied being newly disabled: “It becomes like you’re trapped in your body.”
Williams was living in her hometown of West Lafayette, Indiana, and attending Purdue University at the time of her diagnosis. She started channeling her frustrations into advocacy work with the EveryLife Foundation For Rare Diseases. And Williams, a lifelong soccer player, rediscovered her passion for sports through wheelchair basketball.
“Sports are one of the few times when I really, truly don’t think about my disability, because adaptive sports are not really about your disability,” she said. “They are designed in such a way that you’re not thinking about what you can’t do and instead thinking about what you can do.”
At Purdue, however, she was unhappy with her limited options..
“There’s just a general lack of opportunities, which can be really frustrating,” Williams said. “It’s a lot of time and energy to create those opportunities.”
With her classes and work both remote for the summer, she moved in with friends in Maryland, where she found a CrossFit gym that helped her adapt workouts to her abilities.
Williams exudes joy when she enters PUSH511 in Canton. Her positive energy is contagious, and her dancing to the Taylor Swift music in the gym between sets brings smiles to the faces around her. Attending individual and group CrossFit sessions there became part of her routine this summer. She even branched out into mountain biking and wheelchair rugby.
Unexpected health issues halted her active routine midsummer. In July she made two trips to the emergency room, the second resulting in a weeklong stay at Johns Hopkins Hospital. Doctors were concerned that her breathing issues and the droopiness in the muscles on the right side of her face might be the result of another rare disease. She underwent dozens of painful tests, blood draws and restless nights, but never received a diagnosis.
Williams created a routine to help with her mental well-being during her recent hospital stay. Each morning she would get dressed, brush her hair and teeth and proudly put on her new Air Force 1s. These seemingly small actions gave some semblance of normalcy and control during a challenging situation.
When Williams left Hopkins, she resolved to spend her final week in Maryland being as active as possible. Swimming with friends, practicing basketball and, of course, lots of CrossFit brought out her positive energy once again.
“Finding the wealth of opportunities here and how inviting and welcoming the [adaptive sports] community has been, has been really affirming and allowed me to become a little more confident in a lot of ways,” Williams said reflecting on her summer in Maryland. “I have such a great community here, and it will be hard leaving that.” Williams will take what she learned from these spaces as she returns home. She hopes to do advocacy work to address accessibility issues at Purdue while also working with a CrossFit gym to create a space for her and athletes like her.