Photo essay

COVID triggered a rare neurological disease and an athlete found her strength

After Anneliese Williams was diagnosed with Guillain-Barre syndrome, she found comfort in CrossFit

Heather Diehl

Published 9/15/2023 5:30 a.m. EDT, Updated 9/15/2023 10:00 a.m. EDT

Anneliese Williams, 22, practices rowing at Push 511 in Canton.
Anneliese Williams, 22, practices rowing at PUSH511 in Canton. (Heather Diehl/The Baltimore Banner)

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.”

Anneliese Williams, 22, gets a new wheelchair. (Heather Diehl/The Baltimore Banner)

Anneliese Williams, 22, does a breathing treatment while she does work on a laptop. Her treatments have become her new normal as she lives her life around them.

Williams does a breathing treatment while she works on a laptop. Her treatments have become her new normal as she lives her life around them. (Heather Diehl/The Baltimore Banner)

Williams prepares her medication for the day. (Heather Diehl/The Baltimore Banner)

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.

Williams tries out the new basketball wheelchair she received through a scholarship. Wheelchair basketball was the first adaptive sport Williams tried, and she could not get enough of it. (Heather Diehl/The Baltimore Banner)

Williams works out at PUSH511 in Canton, a CrossFit gym where the exercises are modified to accommodate her. (Heather Diehl/The Baltimore Banner)

Anneliese Williams, 22, practices rowing at Push 511 in Canton.

Williams practices rowing at PUSH511 in Canton. (Heather Diehl/The Baltimore Banner)

Williams cheers after a workout at PUSH511 in Canton. (Heather Diehl/The Baltimore Banner)

Kevin Carlson helps secure Williams’ grip using “adaptive hands.” Her limited grip strength has the potential to restrict what exercises she can do, but adaptive hands expand her options for what she can safely accomplish. (Heather Diehl/The Baltimore Banner)

Carlson holds Williams steady as she pushes herself during her final crossfit session in MD for the summer.

Carlson holds Williams steady as she pushes herself during her final CrossFit session in Maryland for the summer. (Heather Diehl/The Baltimore Banner)

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.

During Williams’ recent hospital stay, her family was hundreds of miles away and her friends were out of town for multiple days. She navigated the time on her own with friends providing support from a distance. As she endured many sleepless nights, she sought comfort in her stuffed rabbit, Flop. (Heather Diehl/The Baltimore Banner)

Williams’ friend Annie Brandicourt runs down the hospital halls pushing Williams in what has become a sort of tradition for her visits. “It brings a lot of joy because it’s exhilarating,” Williams said. Nurses smile seeing the happiness during a challenging time. (Heather Diehl/The Baltimore Banner)

Williams returns to her home for the summer in Essex riding on Brandicourt’s back. During Williams’ hospital stay, she missed all her pets and found a lot of comfort being back in a space that feels like home. (Heather Diehl/The Baltimore Banner)

Anneliese Williams, 22, makes herself breakfast. Her decreased mobility doesn't stop her from living her daily life.

Williams makes herself breakfast. (Heather Diehl/The Baltimore Banner)

Williams and Brandicourt finish packing up the car in the early hours of the morning for Williams’ departure from Maryland. As they say their goodbyes, they make promises to see each other at Christmas and hope Williams will return back to Maryland permanently. (Heather Diehl/The Baltimore Banner)

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.