Amazing recovery
Loyola's Ditscheit is back on volleyball court after fighting serious illness
CHICAGO -- Loyola University senior setter Lauren Ditscheit is given the option to smile as the photographer begins to take her picture beside the volleyball net in Alumni Gym on a recent afternoon.
The choice is simple. "I like to smile," she says.
This is the Lauren everyone knows. She smiles when she sets an assist. She smiles when her teammates score a point. She smiles on the court, in the classroom and during her numerous campus meetings. She smiles when others smile. She smiles to make others smile.
"The one thing most people know about Lauren is she's a very big free spirit," said Melissa Norstrem, Ditscheit's friend and former classmate at Wauwatosa (Wis.) West High School. "She's always happy, always very positive."
It's that reason everyone who knows Ditscheit felt their hearts sink when her smile disappeared in the spring. In its place stepped a neurological disorder called opsoclonus myoclonus syndrome, better known as Dancing Eyes-Dancing Feet Syndrome, which affects about one in every 10 million people.
It took away her smile, her happiness, her motor skills, her vision and her energy, and there was a definite possibility it would end her successful volleyball career.
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Seeing clumps of her brown hair in the shower alarmed Lauren Ditscheit -- as it would anyone who was just a month shy of her 21st birthday. When others began noticing soon afterward that her hair was not only falling out but also not growing back, she became even more concerned.
Her mother, Julie, said in late March that she thought it was best to see a doctor. Ditscheit opted against it. She was simply too busy for something that seemed minor at the time. She already was trying to balance the end of Loyola's spring volleyball season, her multiple campus meetings, interviews for summer internships, and her upcoming finals. Soon, her health forced her to re-examine her priorities. In addition to losing her hair, she began to lose her appetite. That was followed by an inability to get out of bed without vomiting. She then began to feel nauseated whenever she read a computer screen.
From there, her head began to shake, she had uncontrollable twitches, she struggled to stay awake and the ground felt uneven as she walked.
Despite wondering to herself whether she might have Parkinson's, Ditscheit chose to push on. Her focus was finishing finals and securing an internship. Her health would have to wait.
"I knew something was wrong, but I'm a very bad judge of how serious things are," Ditscheit said. "I didn't know how severe things were. I don't know how I did it. It was kind of like, 'I need to get this done, so I could get healthy.' I needed to take things in steps, and that was like the first step."
Ditscheit still made her internship interviews throughout Chicago. After one appointment at a public-relations firm downtown, she began to feel sick, darted to the office bathroom and vomited.
Ditscheit still took her finals. Because her eyes would bother her whenever she stared at a computer, she looked everywhere else other than the screen when she typed. She completed a 13-page research paper for her statistics class.
One professor later told her that she had forgotten to spell-check a final paper, but she explained that she didn't forget; she just didn't have enough energy left to do so. Somehow she ended up passing all her finals and earning an internship.
"She was really determined," Julie said. "She worked so hard to get to that point. No matter how much we said or people around campus said, 'Don't worry about [school],' she had her own goals."
Soon after beginning her internship in May, Ditscheit finally had to face reality. Her condition had become so bad she wasn't eating, she couldn't look at people, she held her head from shaking so others wouldn't feel uncomfortable, she couldn't do the graphic-design work she was hired to do and barely was able to walk.
Even as she called her father, Larry, to tell him how serious things had become, she fell into the building's wall because she couldn't balance herself.
Her life was unlivable. It was now time for her health to take precedence. She gave up her internship, withdrew from her summer classes and returned home just before Memorial Day.
She knew for certain she would no longer graduate in December as planned. As for anything else in her future, it was up in the air.
"She said, 'This isn't fair,'" Larry said. "I said: 'You're right. This isn't fair.'"
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Lauren Ditscheit didn't know what was wrong with her. Her parents didn't know. Even worse, neither did the doctors.
Originally, it was assumed she had the flu. Then she was said to have an inner-ear problem. Next, she was diagnosed with vertigo. Eventually, her symptoms surpassed each diagnosis.
In early June, just after she returned from Chicago to her family's home in Wauwatosa, a suburb of Milwaukee, Ditscheit was referred to the director of neurology at Froedtert Hospital. Within a few minutes of tests, Ditscheit was told she had opsoclonus myoclonus and was admitted to the hospital.
For the next week, Ditscheit would have her body -- as well as her patience -- tested in ways she never could have imagined. She had a full-body MRI. She went through a radioactive MRI. There were tests of her ovaries. Three times she had to endure a spinal tap, which entails having a small needle inserted into the lumbar portion of one's back and having spinal fluid removed.
She had four tests a day for a full week. She weighed 140 pounds, down 25 from a month before, and looked sickly and thin.
"I remember her laying in the bed on morphine in a fetal position," Larry said. "I'm just thinking, 'Oh, my goodness.' That was probably the scariest time for me."
Ditscheit's worst memory at the hospital occurred as she was going to another test. She was being pushed in a wheelchair by a nurse when she was handed a container of iodine and told she needed to drink it. Ditscheit said she would vomit if she did. The nurse told her the other option was to have a shot of the iodine put down her throat.
"I did that and just puked everywhere," Ditscheit said. "I was yelling at the doctor. I was yelling at everybody. The doctors were upset. My parents were upset. They were all upset. I was at the point where, 'I don't care what happens after this. I just can't be here anymore.'"
The tests did result in some good news. She didn't have cancer, a tumor or an infection that can be linked with opsoclonus myoclonus. Instead, it was considered a virus. The bad news was there wasn't a specific cure and she would have to wait for an entire year for it to leave her body.
The only known way of countering the virus was plasmapheresis, a treatment in which a person's plasma is taken out, cleansed and returned to the body. The process removes potentially damaging immune cells.
As Ditscheit discovered, plasmapheresis takes time to produce positive results and saps a person's energy -- but it does work. Throughout June and much of July, her energy was at a minimum. She would sleep for as many as 18 consecutive hours.
When she was awake, she'd have 30 minutes to an hour before she would need to return to her bed. She needed to take a nap in the car midway through her sister's eighth-grade graduation. She talked to her parents with eyes closed. She couldn't write, pour anything or braid her own hair.
"What's going through my head [is], 'Will she get any better?'" Julie said. "Because there was no treatment protocol for this thing. You're watching for any tiny bit. Can she hold a cup to drink? Could she hold the brush? Our goal setting was so tiny.
"She would ask constantly the hardest question which was, 'Will I ever be normal again?' As a parent, you want to say, 'Yes,' but you can't lie to a 21-year-old. You want to offer the child hope, but you don't want to lie. 'We'll just take it in baby steps.' That was the big thing for the whole summer. It was baby step after baby step. The hope was if Treatment A doesn't work, then go to Treatment B, then try something else."
The progress was minimal. "I remember one time I came home from work, and she said, 'Dad, I went for a walk today,'" Larry said. "I asked, 'Lauren, where did you go?' She said, 'Across the street.' Across the street is 50 yards."
Aside from Ditscheit's family, her high school friend Melissa Norstrem was there throughout everything. Norstrem came over nearly every day and provided her company. The two would sit outside together, take walks and talk. It was the kind of support that helped Ditscheit carry on.
"I probably wouldn't have gotten through it if she wasn't there," Ditscheit said. Norstrem did it because she knew Ditscheit would have done it for her or anyone else.
"She's done such good for so many people all the time," Norstrem said. "She's done a ton of mission trips. She's always been there to help you out. I wanted to spend time with her to show her that respect, knowing she just needed someone."
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In time, Lauren Ditscheit's motor skills slowly returned. She was able to take longer walks. She stayed awake for more hours. Her increased energy allowed her to volunteer as a volleyball camp counselor at a local school. With her progress, Ditscheit began thinking about returning to Loyola in the fall as a student and as an athlete.
All physical signs -- she couldn't even catch a softly tossed ball in the backyard when playing with her sisters -- pointed to her not being able to play this season, but her mind was telling her differently.
In late July, Loyola sophomore teammate Natalie Pounovich visited Ditscheit so they could play in a grass volleyball tournament in the Wisconsin Dells. It would be Ditscheit's first competitive experiment. It didn't go well. She missed the ball when attempting to set. She would constantly double-hit it. She would whack the ball out of bounds.
"I would tell her, 'You're going to do it,'" Pounovich said. "You're trying to be positive to keep her positive. I didn't honestly think she would back to where she was."
Ditscheit shared those same fears. "I was not OK by any means," Ditscheit said. "I could not do anything. You just need those days to feel like a normal person. That was my day. I couldn't even serve the ball over the net because I didn't have enough physical power. I felt like a fourth-grader.
"I'm like, 'There's no way I'm going to be able to compete at a Division I level. There's no way. I can't even play against my little sister, who is in sixth grade."
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Lauren Ditscheit reported to school with the rest of Loyola's volleyball team on Aug. 9. Before she arrived, Ditscheit's parents and the Ramblers' coaching staff discussed whether it was safe for her to play. There was concern over whether she would trip herself or someone else.
The first few days were rough on Ditscheit. Her frustration mounted as she committed mistake after mistake on the court. After each practice session, she would return to her room and cry. On the third day, she forced the tears to stop because they weren't helping.
Loyola coach Marcie Wolbeck brought Ditscheit along slowly. Like Ditscheit's parents, Wolbeck was worried about her health. Everyone was amazed she was even back on the court.
"In my mind, it was a miracle she was able to participate fully," Wolbeck said. "She's a very brave girl. It was really, really amazing to see her persevere and set those goals for herself and push through any challenge put in front of her."
Ditscheit thought differently. She had focused on school in the spring, her health in the summer and now she had moved on again.
"For me, it was volleyball," Ditscheit said. "For Coach, it was my health. For my parents, it was my health. For me, it wasn't anymore."
Ditscheit knew right from the start that she couldn't contribute as the team's primary setter, as she had in her previous two seasons. She expected to see some minutes, though, and was shocked when she never left the bench in Loyola's first eight matches.
One day, she couldn't hold back her anger anymore. She couldn't stand not playing, nor that a well-intentioned assistant coach had been telling her to stay positive and she would prevail. Ditscheit had clung to those words for hope. Now, she felt it was all a lie.
"I just blew up," Ditscheit said. "I've never blown up on coaches before. I just freaked out. 'That's a bunch of crap. Everything you said is crap. What does [the other setter] have that I don't? I've worked so hard for this. I've had it taken away because I was sick.' I just lost trust in the coaching staff as a whole. You can't say one thing and do another."
Ditscheit's teammates watched as she departed the coaches' office.
"I remember she ran out of the office, and she was just bawling," Pounovich said. "I never saw Lauren like that. She's always positive. We ran after her and asked her what's wrong. She said nothing. We kept asking, and she told us how much she loved volleyball and how she just wanted to play. To see her break down like that was hard to watch."
The next day, Ditscheit apologized to her coaches. Wolbeck let her know it was OK. They understood. The following week, Ditscheit saw her first action during a tournament in Chattanooga, Tenn. Her parents had originally planned on making the trip but canceled their airline tickets when it seemed doubtful she would play. At the last minute, Larry got in the car at 3 a.m., drove 14 hours and arrived in time for Loyola's opening match with Southern Illinois-Edwardsville.
Ditscheit came off the bench shortly into the first games and would contribute 31 assists in the Ramblers' victory.
"I didn't even know she was going to play, but I had to go down to support her," Larry said. "That was emotional to see her on the court."
Julie witnessed her play at Loyola the following week.
"Everyone around me was thumping my back," Julie said. "Just to see her out there was incredible. It was just … I was speechless; [that's] all I can really say. Just to see her walking on the court with her uniform was unbelievable.
"She just had a smile on her face that wouldn't stop. This was her gym; this was her team. I couldn't tell you what the score was. I didn't care."
Ditscheit did have to transform her game. Fatigue set in quicker. Her serves weren't as accurate. She made more errors than in the past. Yet, she was playing volleyball.
"It was so exciting," Ditscheit said. "You put in all that work, then you finally get out there, and you're like, 'Welcome back,' and you get your team back. It's just something you love to do. I wouldn't have it any other way. You still love to do it after being how old, after doing it for how long and you're putting that time in.
"I remember getting done and saying, 'That felt great.'"
Last Saturday, Ditscheit was one of three Ramblers to be honored in her final home game at Loyola. She had her parents, Norstrem and other family and friends in the stands at Alumni Gym in Rogers Park. That, coupled with Halloween, Ditscheit's favorite holiday -- she and six of her teammates dressed as the Seven Deadly Sins -- made it a memorable weekend.
Afterward, she couldn't help but reflect on all that had occurred in her life since March. She even flipped open the journal she had kept throughout the summer.
"It was interesting," Ditscheit said. "It wasn't what I remember writing. I thought I was a little more positive than what I was in it. I just saw how upset I was this summer. It didn't look as hopeful as I thought I was this summer. Reading that and comparing it to where I was, wow, I can't believe how far I've come, how far my family has come with me.
"Yeah, I've been happy. I've been able to do a lot more things. I've been having a good time. I think Senior Night and Halloween was the best weekend up to date so far. It was after coming off a high like that. You could say I'm returning to normalcy and happiness."
Scott Powers covers high school and college sports for ESPNChicago.com and can be reached at spowers@espnchicago.com.
