Graduate fought to return to SUU after coma took reading ability
Jordan Williams knew it should mean something. The letters should form a word.
But as she watched her mother solving a word-search puzzle, it was as if there was a brick wall in her brain.
"I just got these big eyes, 'I can't read it, I can't say it,' " she said. Her mother held up the puzzle and pointed to another word.
" 'I don't know. What is that word?' " she said. "I had the knowledge in the back of my head that I had known how to read, but I couldn't."
Williams, then 19, was just waking up from an 11-day coma caused by lupus. Her struggle to regain what she'd lost took her back to elementary school and changed her life. More than four years after the coma, she will graduate from Southern Utah University with a teaching degree Friday.
"Sometimes when you get old, you forget how you felt when you were in the second grade, how it felt to look at something and just be totally lost," said Williams.
Relearning how to read has given her the "empathy and understanding â¦ to help."
'I didn't feel good' • Growing up in Parowan, Williams was a strong student and especially liked science. One of her most memorable classes was in the fifth grade when her teacher performed a baking-soda-and-vinegar "volcano" experiment.
"We'd gathered around the sink to watch, and I remember thinking, 'Oh my goodness, that's so cool,' " she said.
About a year later, Williams was diagnosed with scleroderma, an autoimmune connective tissue disease that left her with dark spots on the right side of her body and unable to make a fist or flatten her hand.
It also caused her joints to swell, but it didn't outwardly slow her down. Her sixth grade teacher, Kim Doubek, remembers Williams as a popular girl who did well in class.
"She was always very happy," Doubek said. "She wasn't sick at all, very healthy and active."
Williams managed the disease through high school, where she played softball and volleyball and ran track.
But during her senior year, as she performed with the Parowan High School Rannettes drill team, Williams realized she was weakening.
"I couldn't do the splits or all the things I had been doing," she said. Eventually, she couldn't get up or down without help.
Treated with an autoimmune suppressant, she moved in with her best friend after graduation to study nursing at SUU. She'd always known her illness could get worse, but it also seemed something else was wrong.
"I was just sick all the time, I didn't feel good and I didn't want to go out and do anything," she said. "That's not the way you want to start out your freshman year."
She took a year off school and was diagnosed with lupus, an autoimmune disorder. Her health continued to decline until she weighed just 82 pounds on her 5-foot-6-inch frame.
Rare ailment • By Christmas 2008, Williams was living with her parents again. A few days after the holiday, the family gathered for a game of Monopoly. She won, but as she walked back to her bedroom a feeling of massive pressure descended on her head.
"I've never had a worse headache before or since," she said. Lupus had caused a severe blood pressure spike and seizures. At University of Utah Hospital, she was put in a coma due to swelling in her brain.
A lack of oxygen apparently killed support cells that connected her brain's visual input to the language center, said U. neurosurgeon Phil Taussky.
"It's what we call a disconnect," he said. "That specific syndrome, to be able to speak but not to read, is very rare because you have a hit, an injury, to a very specific part of your brain."
Those help and support cells, however, can be rebuilt. "Different parts of the brain can take over from other parts â¦ it just takes a long time," he said.
'Just so frustrating' • Williams was released from the hospital after 40 days of physical and speech rehabilitation. When she returned home, she called Doubek, now a reading specialist at Parawan Elementary.
The first time they met, Doubek tried testing Williams at the fifth- to sixth-grade reading level the skills she'd helped her master years ago.
"I just had to keep dropping down and down," she said. "It was hard not to let her know how low I was going."
Williams had the reading ability of a first-grade student, comprehending only the smallest words.
"I could tell her brain was jumbling everything up," she said. "She might know the word 'excited' but she wouldn't know the word 'of.' "
Williams had to relearn how letters worked together to make sounds.
"It was just so frustrating to know how I could do it before," she said.
Doubek struggled to find practice passages that would be at her repeat pupil's reading level, but still be interesting to an adult.
"I knew I could help her. She was so determined to get well," she said. And she found a solution: The Twilight teen vampire books, which are written on a fourth-grade reading level.
'Finally here' • Williams progressed quickly over the next several months. In the fall of 2009, she enrolled again in SUU, but with a new major.
"I didn't want to do nursing. I didn't want to be in the hospital," she said. "I wanted to do something I liked, and I thought being a teacher would be a good job."
Williams, 23, recently finished her student teaching in an elementary school classroom, reading books such as Diary of a Wimpy Kid and Ralph S. Mouse. She saw some students pick up concepts quickly, like she did the first time around, and others struggle as she did just a few years ago.
Brian Ludlow, one of her education professors, said her ordeal made her a better teacher.
"By the time we get to be adults, we've forgotten how we learned most of what we learned," he said. "When you're an adult and you have to re-teach yourself like she did, you remember what a struggle it is."
Spelling is still hard for Williams, and she has some physical challenges in the classroom. Her joints ache, she still can't fully close her hands and breathing tubes used when she was in the coma left her voice raspier.
But she can go running every day, and she's settled in Washington with her husband, Tyson Williams, who she started dating after returning to SUU. She is job searching and is ready to don a cap and gown.
"I'm super excited," she said. "I can't believe it's finally here." Walk to End Lupus Now
The Walk to End Lupus Now and Run for Lupus 5K will be held Saturday, May 4 at Liberty Park in Salt Lake City. The event begins at 7:30am. For more information, call (810) 972-7800.