Despite a debilitating disease, Ironwoman Lynn Rogers goes for her 11th Chicago Marathon
Her first clue was when her fingers turned numb.
When Dr. Lynn Rogers set out on an early-morning run in late July 2017, a week before departing for Canada to attempt her second Ironman triathlon, the then-40-year-old noticed that she couldn't feel her fingertips.
The following day, the tingling returned --but in her feet. Her tongue was next. Rogers went to the emergency room, where doctors performed a battery of tests but couldn't find anything wrong.
Rogers had been a fit, healthy, endurance athlete for over a decade. As director of the Neuralplasticity Lab at the Shirley Ryan AbilityLab (formerly the Rehabilitation Institute of Chicago), Rogers studied the brain and how it controlled movement. She was also a faculty member at Northwestern's medical school, balancing her love of scientific research with her passion for running and biking, waking up at 5 a.m. four to six days a week for training runs or rides. She loved jogging alongside her fellow triathletes and marathoners, a run club that had become a close-knit community that often traveled the country to race together.
During her first Ironman, in Madison, Wisconsin, in 2014, Rogers broke her foot as she ran out of the water post-swim. As soon as she mounted her bike, her foot began to swell. But she kept pedaling, trying to push with the quasi-functional part of her foot. After a brief stop in the medical tent post-ride, she ran onward, hobbling through the entire marathon. She finished the race -- and spent the next four months in a foot cast.
These new symptoms, however, were a mystery. At work the next day, Rogers' coworkers at the rehabilitation clinic ran her through several assessments. Rogers, fully sober, couldn't pass a basic sobriety test. She headed back to the ER and endured another series of tests, including a spinal tap. Still, doctors could find nothing wrong. Six days out from the Ironman, Rogers boarded a plane for Whistler, British Columbia, determined to compete. She'd spent the past nine months training, and she had numerous friends and family members flying to Canada to cheer her on.
But as soon as she deplaned, Rogers could barely walk. She reluctantly realized she couldn't race; instead, she cheered her friends from the sideline. By the end of the race, she couldn't stand without support. She went to bed that night and found herself unable to sleep. Horrific back pain felt like a metal band had wrapped around her chest, squeezing her like a constrictor. The tingling she'd experienced off and on had taken over her hands, arms, legs and feet. She began to comprehend the magnitude of what might be happening. And she was afraid.
Aided by friends, Rogers made her way to the ER in Whistler, where doctors coordinated with physicians in Vancouver and Chicago. "They determined that if I could still breathe, I needed to get on a plane immediately," Rogers said. "That was the craziness we were in -- wondering if I would keep breathing long enough to get home." Rogers made it through the flight, and upon landing, she and her boyfriend, Tony, took a cab straight to Northwestern Memorial Hospital. Only this time, she wouldn't leave so quickly.
Rogers ran her first marathon 16 years ago. She had signed up for the 2002 Chicago Marathon while studying for her Ph.D. as a graduate student in Madison, a casual runner who had taken up the sport mostly as a way to stay in shape. But after she crossed the finish line, she was hooked. She had trained alone, so running alongside hundreds of people on marathon day -- cheered by thousands of fans -- was exhilarating. "I thought, 'Wow, this is amazing, the experience of race day,'" Rogers says. "That reinforced the idea: I liked training, having a structure and a goal."
Rogers continued running after moving to Chicago in 2009, and in 2012 she trained for her first half-Ironman, which led to another endurance passion. Rogers met one of her fellow runners, Olivia Castellini, almost 10 years ago, and they have run together ever since.
"Something about Lynn that is unique is that she is so determined, but she is also such a champion for everyone else's goals," Castellini says. "She's the first person to volunteer to do the awful set of 800-meter repeats in the middle of a snowstorm at 6 a.m. so that you can train for your marathon."
Which helps to explain why Rogers didn't leave Whistler, even once she realized she wouldn't be able to compete.
As Rogers exited the cab at Memorial Hospital, she had to walk half a block to the entrance. "That sticks out for me, because that was the last time I would walk," Rogers says. "Tony had to help me, and he got me into a wheelchair. And then, that was it."
Rogers was paralyzed from the chest down. More tests and another spinal tap finally revealed a diagnosis: Guillain-Barre syndrome, a disorder in which the body's immune system attacks the nerves, resulting in temporary and sometimes permanent paralysis. There is no known cause. The disorder affects, on average, one in every 100,000 people, and is most common in adults.
After three weeks in the acute ward, Rogers was moved to the Shirley Ryan AbilityLab rehabilitation clinic -- the same place where she worked as a research scientist. But two weeks into physical therapy, Rogers wasn't improving.
In fact, her condition had worsened, so she was transferred back to Memorial. There, doctors tried a different treatment called a plasma exchange, in which Rogers' plasma is taken from her body via a catheter, run through a machine where her blood cells are matched with donor plasma and then reinserted into her body. She received seven treatments over 14 days and slowly regained mobility. Still, even tiny movements caused extreme pain. Rogers could barely move her ankles -- simply bending and straightening was excruciating. When she tried to sit up, it felt like her hamstrings would rip in half.
For months, Rogers followed a frustrating routine: plasma exchange, recovery, relapse, more plasma treatments, more physical therapy, another relapse. By November 2017, four months into her hospital stay, doctors shifted her diagnosis to CIDP, chronic inflammatory demyelinating polyneuropathy, a chronic form of Guillain-Barre syndrome.
"It was terrifying," Rogers says. "It was starting all over again every time."
Rogers' running community rallied around her. Her friends showed up at the hospital each day with food, magazines or simply to keep her company. Castellini says that she'd text Rogers a note of support almost daily. "We all understood that if you got an email, she was feeling crummy, because she didn't have the dexterity to even type on her phone," Castellini says. "But if you got a text, that was a really good day."
In November, Rogers was admitted as an in-patient at the AbilityLab, requesting that she stay on the 23rd floor, the same floor as her own research lab. She had physical therapy several feet away from her desk and the research team of scientists she supervised in studying patients like herself.
Rogers was also determined to run again. She had lost 25 pounds of muscle, and she relied on ankle braces, crutches or a wheelchair for mobility. But in November, she stepped onto an anti-gravity treadmill, wearing a harness to support half of her body weight. "It felt like an elephant running, because I was just smashing down on myself," Rogers says. Each day, she assumed a little more of her weight while trying to run on the treadmill.
On New Year's Eve, she attempted to run unassisted for the first time since her diagnosis. She alternated walking and running, traveling 3 miles in the span of an hour (her previous pace, pre-diagnosis, averaged at about an eight-minute mile).
A CrossFit athlete, Rogers also focused on rebuilding her muscle mass, working with her physical therapists to find strength exercises she could complete with limited mobility. Doctors and therapists told her not to push her body too far. But that advice ran counter to what she believed. "Everyone with this diagnosis is told, 'Don't work, don't push, you can't do anything,'" Rogers says. "But if you are being told that, how in the world will you get out of a wheelchair or build the strength to do anything? I wanted to be the story that someone who is looking for hope could look at and use to push themselves through really bad days."
So Rogers signed up for the 2018 Chicago Marathon on Oct. 7. She designed a running schedule with her good friend and running coach Jenny Hayes. Rogers worked with her CrossFit trainers on strength workouts adapted to her diagnosis. Rest was also critical; initially post-diagnosis, Rogers needed two-plus hours in the morning for her medications to kick in before putting on her ankle-foot orthoses and forearm crutches and attempting any sort of movement.
Slowly, as she has improved, she has relied on less pain medication and fewer devices for assistance. But she still needs eight to 10 hours of sleep to function.
"Because she was so physically fit, it really helped with the endurance aspect of the rehabilitation," says Dr. Elliot Roth, the co-medical director of the Brain Innovation Center at AbilityLab and one of Rogers' main doctors. "She also had the psychological makeup to understand the value and importance of exercise. She never said, 'Leave me alone, I want to stay in bed all day,' as some patients do. She wanted to get up and do more and be active."
Doctors began to stretch out the number of days between her plasma treatments, from seven to 10 to 14 to 21. She has now had over 52 treatments. While she is living at home and working full time again, each day is still uncertain. One morning a month ago, she woke up and couldn't hear. On a recent Wednesday, she slept for 48 hours straight, missing the entire workday.
Rogers walks with a cane and knows that each day brings unforeseen challenges. Perhaps most frustrating, CIDP has no known cure -- and few treatment options. The plasma exchange has a shelf life; already, Rogers says her veins are worn down and won't be able to endure the treatments indefinitely. She can try chemotherapy drugs, which have proven effective in some CIDP patients, but she has been told to prepare to be wheelchair-bound again.
Another major motivation for her to run the 2018 Chicago Marathon, which will be her 11th Chicago Marathon, has been fundraising for both the AbilityLab and the GBS/CIDP Foundation. Through Oct. 1, she has raised about $6,000 total (just under $4,000 for the AbilityLab and $2,000 for the GBS/CIDP Foundation) in the hopes that she can help in finding a cure.
"She continues to amaze us," Dr. Roth says. "It's quite striking how much she's doing and keeping physically active. Her workouts and her activity level are much more than I expected."
Still, no one knows how her marathon day will unfold, including Rogers. She might wake up with partial paralysis or with extreme exhaustion. Despite those potential setbacks, she is determined to compete. She has many supporters who will be with her along the race course -- and thousands more afflicted by CIDP and Guillain-Barre whom she hasn't met, but whom she is inspiring from afar.
"They are all with me -- all the faces I don't know of the people who don't think they can, who haven't had the good luck in recovery that I've had," Rogers says. "They haven't gotten this far, yet. But maybe they'll see that they could -- and that it's possible."