More than two years ago, near-fatal complications from a rare disease interrupted a sophomore’s quest for her degree. Now this brave Gator is back on campus — getting by with a little help from her UF friends.
Tattooed on the wrist of 21-year-old Mariel White (3HHP) are two words: “She persisted.”
That phrase only hints at the epic battles Mariel has fought and won in the last several years.
In September 2017, Mariel was an active sophomore — taking a full load of classes, cheering at Gator games with her Phi Mu sisters, running at the gym, working two part-time jobs — when severe neck pain and a fever landed her in UF Health Shands Hospital. Back home near Atlanta, she was diagnosed with Churg-Strauss/EGPA, an extremely rare vascular disease with only 2 to 5 new cases per year out of every 1 million people. Doctors started her on oral chemotherapy and steroids. But in January 2018, complications from the incurable disease caused Mariel to suffer four strokes.
She lost partial vision in one eye and was permanently paralyzed from the waist down.
Friends and family guarded Mariel fiercely in early 2018, assuring her she “would return to UF one day.” That phrase became the young woman’s rallying cry over the next 18 months as she courageously fought to overcome her physical and cognitive impairments and to master caring for herself as a paraplegic.
“It was never an option not to go back to UF,” Mariel said. “I knew I was going to work as hard as possible to make that happen.”
On August 2, 2019, nearly two years after falling ill, Mariel returned as a student to UF.
Whatever lies ahead, Mariel, now 21, is determined to graduate from UF with a Bachelor of Science in sports management, and a minor in mass communications, ideally in fall 2021.
Her goal is to be a sports reporter and analyst.
“I’ve never let anything stop me from dreaming big and setting big goals and high standards,” Mariel wrote on her new blog. “This is no different.
“I am strong. I am capable. I am not defined by my disability.”
Here are scenes from her first semester back at UF.
“I have so many thoughts of excitement and fear running through my head,” she writes. “I’m excited to be back with my friends, back in school, back to college life, but also afraid of all the what ifs and unknowns.
“I’m worried about what people will think about me and if they’ll accept me. I’m worried I’m not going to be able to keep up in the way I want to. I’m worried I won’t be able to do certain things because they won’t be accessible. And I’m terrified I’m going to get sick or have my symptoms flare.”
August 2, 2019 | Cypress Hall Dorm
Move-in day is monumental for Mariel. It’s equally so for her mother, Jill Olney, who is doing a heroic job of letting go of her daughter for a second time.
“I’m super happy, super nervous to have her here. Really, she is ready for this. Plus I’m only five hours away,” Jill says, reassuring herself.
Another safety net to calm Jill’s fears: every inch of her daughter’s room in Cypress Hall, hailed as “the most accessible residence hall in America,” has been planned and outfitted for people with mobility impairments: a zero-entry shower, a height-adjustable sink, easy door openers and a computerized system to control lights and window blinds. Plus, a personal assistant will be helping Mariel with weekly shopping and room cleaning.
Mariel is already taking charge of her space. Now that she can fully support her own weight with her arms, she no longer needs the room’s overhead lift system. “We can take that down,” she says.
August 22, 2019 | Phi Mu Sorority House
ABBA’s “Dancing Queen” blares as about 150 Phi Mu sisters in sequined disco gear mill about on the front lawn, awaiting the new members on Bid Day. With glitter on her face, Mariel grooves in her wheelchair, Lassie panting beside her in a pink Phi Mu bandanna.
Since Mariel first got sick, friends, family and the Gator Nation have enveloped her in their care and willed her to fight back.
For instance, nine months into her recovery (October 2018), the Tim Tebow Foundation W15H program hosted Mariel and her family in Gainesville for the LSU vs. Florida game. Mariel’s VIP treatment included attending practice with the team and being Tebow’s guest on ESPN’s “SEC Nation.” Tebow also introduced her to ESPN host and sideline reporter Laura Rutledge (BSTel ’11).
But perhaps Mariel has no greater friends than her Phi Mu friends, who live by their sorority’s motto, “The Faithful Sisters.”
When she was first paralyzed, they sat by her hospital bed in Georgia and held fundraisers to help pay for her medical expenses. Now Phi Mu is doing all it can to make her and future sisters with disabilities feel welcome, including installing an elevator and a wheelchair-accessible shower.
“We’re really, really happy to have her back,” says senior Riley Marshall (4ENG), who has been known to carry Mariel piggyback. “It was so incredibly hard when she was ill.”
At 6 p.m., 80 new Phi Mus come running down the hill to their new home. Three years ago, Mariel was one of them.
“I’m glad my friends are learning about accessibility and how it really impacts me,” Mariel writes later. “It’s something I never even noticed or considered before, but now I have to think about it everywhere I go.”
Living with Churg-Strauss syndrome means accepting limitations.
“I’m learning more how my autoimmune condition affects me on a daily basis,” Mariel writes. “On days where I go nonstop or stay up later than usual, I start to have lots of pain. The pain sucks, but it forces me to stop what I’m doing and go to bed, so I guess it’s kind of preventing anything worse from happening.”
Then there is the bittersweet realization that time hasn’t stood still for the Class of 2020:
“I’ve loved being back, but it’s been really hard knowing that a lot of my friends are going to graduate in May and leave me behind,” she writes. “Hearing everyone talking about being seniors and graduating, and their plans for after college, it’s really hard.”
September 2, 2019 | Student Rec Center
The gym is Mariel’s domain. It was in her freshman year, and it still is — except now she favors different workouts and equipment.
“Before, I would always be on this side of the gym,” she says, nodding at the banks of Stairmasters and elliptical machines. “I mainly worked my legs.”
Triceps flexing, Mariel grasps her wheels and propels herself to the free-weight section, where she grabs a pair of 15-pound dumbbells.
“Now, I mainly focus on upper body,” she says between push-press reps, bicep curls and pull-ups.
Prior to returning to UF, Mariel worked with a personal trainer to build her upper body strength and lose the 50 pounds she had gained from her prescribed steroids. Key to her success was Disability Icon (DI), an online program with customized fitness, nutrition and lifestyle coaching for wheelchair users.
The work paid off. Mariel’s confidence soared in September 2019 when she flew on her own from Jacksonville to Salt Lake City to attend a four-day DI empowerment workshop for women in wheelchairs.
September 13, 2019 | Rinker Hall
To anyone observing today’s Intro to Public Speaking class, Mariel appears to be just another bright, articulate student who freely shares her opinions in discussions.
Classmates don’t realize that her disease brought on learning issues.
“I’m more disabled because of my strokes and chronic illness, the things you can’t see, rather than the spinal stroke (paralysis) and wheelchair, the things you can see,” she writes in her blog.
Immediately after the strokes, Mariel had problems recalling words. “I couldn’t tell you what my favorite food was, my friends’ names, or what I called my grandmother,” she writes. “I also had to relearn how to read; I didn’t even know what the letter W was called.”
Other skills she had to relearn include basic math — starting with 2+2 — and the practice of scanning a text, made difficult by the loss of peripheral vision in her right eye.
Today after considerable rehab, therapy and practice, Mariel’s cognitive impairments are greatly improved; but she still has farther to go. In fall 2019, she reduced her schedule to two classes to ease her transition. Even so, she finds herself caught up in familiar anxieties over grades, homework and tests. But this time, her perspective is different.
“I’m grateful that now I’m able to stress about school,” she writes.
Accessibility at UF
September 20, 2019 | Phi Mu House
It’s the annual reveal, when the new “little sisters” find out which older Phi Mu has become their mentor, or “big sister.”
Until a week ago, Mariel wasn’t sure if she would be called on to participate. Then she got a text message and sprang into action, ordering custom items from Etsy (a T-shirt, a cozy blanket, and more) and dropping them off each evening for her little at Phi Mu, anonymously.
On the front lawn, the new members walk in circles — once, twice — around the veterans, singing “We are the sisters of Phi Mu.” Each little cradles her latest gift. When she spies someone with a matching item, she has found her big sister.
At the third pass, sophomore Danielle Murphy of Atlanta is still searching. Then she runs to the bottom of the hill, having spied Mariel there holding an identical glass.
“Oh my god, thank you so much! I love the blanket,” Danielle gushes.
“I’m so glad,” says Mariel. “I still have the blanket my big gave me.”
Later, Mariel writes on her blog: “Life is hard for everyone at times, but it’s so important to take a step back and get perspective. Appreciate where you are. Appreciate where you’ve been. Dream and prepare for where you to want to go. Perspective is the key to joy.”
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