Jan 29, 2015Comeback Athlete: Lauren Ditscheit
Loyola University Chicago
By Kyle Garratt
Kyle Garratt is an Assistant Editor at Training & Conditioning. He can be reached at: [email protected].
Larry Ditscheit has seen his oldest daughter, Lauren, compete in countless volleyball matches. She started playing in fifth grade, continued through high school, and had been Loyola University Chicago’s primary setter as a sophomore and junior. But last September, he awoke at 3 a.m. and drove 14 hours to see Lauren play in Chattanooga, Tenn.
This match was special, and not just because it would be her first game action of the season. For much of the previous summer it appeared Lauren would never play NCAA Division I volleyball again. That’s reality for someone struggling with involuntary eye and hand shaking–someone who watched her hair fall out, constantly felt nauseous and fatigued, and started many mornings by vomiting.
Last April, Ditscheit began feeling symptoms of opsoclonus myoclonus syndrome (OMS), a rare neurological disorder better known as dancing eyes-dancing feet syndrome. “The day after our spring [2009] season, it hit me really hard,” she says. “I started lying around a lot and sleeping for 12 or 14 hours a day. I would get up in the morning and literally start puking, and then I wouldn’t eat during the day because I felt sick to my stomach. Anytime I was walking or on a bus I had really bad vertigo symptoms. I felt like I was going to fall, and I even walked into a pole once. I felt like I was walking on sponges and I couldn’t get my balance.”
Final exams were approaching, she had interviews for summer internships, and she participated in several university groups, including Christian Life communities and Colleges Against Cancer. She thought the symptoms were stress-related and would soon pass. They didn’t.
“At the end of finals week I started getting really shaky, which I thought was from not eating,” Ditscheit says. “Once school ended I noticed that my eyes were moving back and forth really fast. If I stared at somebody, my eyes would shake and eventually my whole head started shaking. That’s when I knew something was really wrong.”
But she didn’t know what was attacking her, and more troubling was that neither did anyone else. Her first three diagnoses were the flu, an inner-ear infection, and vertigo, but her symptoms were worse than for any of those conditions. She was prescribed balance exercises that didn’t help, and one doctor after another couldn’t tell her what was wrong.
“It was the most frustrating thing ever,” Ditscheit says. “I was doing the summer program with the team, but I couldn’t even walk into the room without running into the door. Once, I was working on my reflexes by throwing a ball against a trampoline and catching it, and it hit me in the face. I was so embarrassed.”
In early June, doctors referred her to a neuro-opthamologist at Froedtert Hospital near her hometown outside Milwaukee. There, she finally received the correct diagnosis, but that was only half the battle. In adults, OMS is typically caused by a tumor, so Ditscheit underwent three days of tests to see if she had one.
“At that point, I finally felt like they were actually doing something,” Ditscheit says. “Rather than saying, ‘Oh, you’ll eventually get over it,’ at last they were going to figure out what was happening to me. I was grateful, but I kept puking and felt like a guinea pig for the doctors. I would see doctor after doctor and have to re-explain how I felt.” By the time she was correctly diagnosed, she had lost 25 pounds.
For someone whose entire life seemed to be hanging in the balance, Ditscheit was very lucky. The doctors found no tumor and determined that a virus caused the syndrome. But on the other hand, she was incredibly unlucky to have the syndrome at all–OMS is most common among children with cancer of the nervous system and least common among people in her age group with no tumors. It affects one out of every 10 million people.
The antibodies in Ditscheit’s immune system were attacking her brain, which caused the shaking of her eyes and hands. Initially, she was treated with plasmapheresis–a procedure that involves removing blood plasma, cleansing it in an attempt to filter out the damaging immune cells, and returning it to the body. She went to a blood clinic three times a week for three weeks.
Once during this treatment, air entered her plasmapheresis tube and caused her blood pressure to dip dangerously low. She went into cardiac arrest, her parents called 911, and an ambulance took her to the hospital, where she remained for the rest of the day.
“It felt like someone was sitting on my chest, and there was sharp pain from my heart shooting down my arms and abdomen,” Ditscheit recalls. “I couldn’t stand up or breathe. It was terrifying.”
After three weeks of plasmapheresis, her body adjusted to it and it ceased being effective. The treatment helped with most of the symptoms, but she was still chronically fatigued. In mid-June, she started IVIg (intravenous immunoglobin) therapy, which suppressed abnormal immune proteins and helped increase her energy. Much of the summer was a rollercoaster of expectations and experiments. In July, she felt well enough to play in a grass tournament, but performed poorly. The next day, she fainted while coaching grade schoolers at Loyola.
“The problem was that every day was different,” Ditscheit says. “I would wake up one morning feeling great and think things were getting better. The next morning, I would crash and sleep a lot. I had a false sense of hope the whole time.”
Ditscheit began practice on Aug. 9 with the rest of her teammates, but it was a struggle. As a junior she had led the team in assists and the Horizon League in service aces. But in those early practices she sometimes missed the ball completely.
“When she first came back, I thought there was no way she could go through a whole practice, let alone a whole game,” says Amanda Buchanan, MS, ATC, the team’s Athletic Trainer. “We discussed getting back to just being a practice player. We really didn’t think she would be able to improve at that point.”
Ditscheit started by participating in one of the two-a-day practices each day, and even then she didn’t perform every drill. She talked with Buchanan frequently about how she felt and the possibility of taking a medical release and not playing volleyball. The athletic department reassured her it would honor her scholarship regardless of what she decided.
“Amanda told me, ‘Do whatever is best for you,'” Ditscheit says. “‘If you don’t think you can play, then that’s probably the best decision.'”
Ditscheit hated sitting out, but knew she wasn’t healthy. She met with Buchanan before each practice to go through a battery of balance and proprioception exercises prescribed by her doctors. She would stare at a dot on the wall and shake her head side-to-side and up-and-down, or simply follow Buchanan’s moving finger to retrain her visual focus. She also walked forward and backward with one foot in front of the other, sobriety-test style, while shaking her head horizontally and vertically to improve her balance.
“Her inability to focus on the ball was always the main problem,” Buchanan says. “When she was playing, you could tell she was just using motor memory instead of actually seeing the ball.”
Ditscheit had to re-learn the most basic skills. “I had a lot of trouble with hand-eye coordination,” she says. “When setting, I would double-hit the ball all the time or it would hit me in the face because I didn’t know exactly where it was. Just as it approached, my eyes would shake back and forth really fast. So I would lose the ball in the air at the last second and have to adjust.”
Buchanan talked frequently with Head Coach Marcie Wolbeck to keep her apprised of Ditscheit’s progress. When she would mis-hit a ball or appear fatigued, the staff knew it was time to hold her out of practice.
“Lauren put up a very tough exterior and wanted to prove she could do everything,” Wolbeck says. “That’s just her personality, and it really helped her in volleyball in the first place. However, it didn’t allow everyone on the team to understand what she was going through.”
As the IVIg treatments took effect and the coordination exercises began paying off, Ditscheit’s return to a semblance of normalcy was slow. “She eventually accepted her disorder and started working with it,” Buchanan says. “That was the biggest step forward. She would set three balls in a row perfectly and the next one would go way off. She got very frustrated with herself and I would pull her aside and say, ‘It’s fine. We’re going to keep working on this.'”
“I had to accept where I was at the time, and that was the hardest part of the whole process–learning how to play with the illness,” Ditscheit says. “I just relied on my natural instincts a lot more. I got in position, stuck my arms out, and hoped the ball would be there. I was playing without sight.”
While she was getting better at accepting her illness, she wasn’t content not practicing or playing. She sat on the bench for the first eight contests of her senior season, waiting for the team physician to clear her. Her personal physician told her she was well enough to play, but she was still restricted during some practices. Her frustration mounted and she argued with her coaches for the first time.
“I felt like I was getting better and they weren’t pushing me any more because they were afraid I was going to faint or get sicker,” Ditscheit says. “If they treated me like a normal player and I didn’t perform, then I would know I didn’t deserve a position. I was frustrated because I felt like I wasn’t getting anywhere.”
When she was finally medically cleared to play in Chattanooga against Southern Illinois University-Edwardsville, she contributed 31 assists in her first match. Loyola won the tournament and she made the all-tournament team.
“I thought, ‘This is where I belong, I belong with my team,'” Ditscheit says. “Just give me a chance and see what I can do. I was excited to be back, and the whole sickness was overcome by looking at everyone else on the court and feeling like they had my back and knew what I had gone through.”
Ditscheit had to become a different player. She relied less on her skills and power and more on rallying her teammates, or as she puts it, being that loud, annoying person who gets everybody pumped up.
“When she got out there in her first game, you could see the dramatic impact she had on the team,” Wolbeck says. “It was really a neat moment to see her spirit permeate through her teammates and elevate our play. Lauren is one in a million for recovering and competing in her final season.”
Ditscheit managed a 4.0 GPA during the fall semester despite having trouble reading. Stress and reading still trigger eye and hand twitching, but her doctors say that should dissipate this spring, a year after her symptoms started. She now coaches at youth camps, taking extra time to warm up as she deals with lingering visual focus problems.
Set to graduate in May with a degree in advertising and public relations, she will then begin a public affairs internship at a place she once hated–a hospital. “I completely changed my internship to work at the Chicago Children’s Memorial Hospital because this experience made me appreciate the medical world a lot more,” Ditscheit says. “That’s something I never thought I could be involved in. I wanted to design and be creative, but I found that you can be creative by helping other people, too.”
She briefly considered becoming a physical therapist, though she now says that’s unlikely. But if her illness has taught her anything, it’s that intentions can quickly be rendered irrelevant.
“I had a four-year plan for what I wanted to do and who I wanted to be,” Ditscheit says. “Once I got sick, I had to re-evaluate everything I wanted to do and take it moment by moment to see what each day brought. It calms me down and makes me appreciate everything I have in front of me, because sometimes that’s all you have.
