My name is Lynn, and people keep telling me I’m a survivor. That I am strong. Personally, I think I’m a normal person who ended up in extraordinary circumstances. I am a Biomedical Engineer and Rehabilitation Neuroscientist professionally, and a strength and endurance athlete recreationally. In July of 2017, ten days before I was to race Ironman Canada, I noticed a pins-and-needles tingling in my fingers. The next day it was in my toes. The following day my tongue went numb. I headed to the doctor and after days of tests and monitoring I was released with a note saying that my problems were due to bulging disks and that “there was nothing neurologically wrong with me.” I left the hospital 12 hours before my flight – I packed like a lunatic and got on the plane.
With all the optimism and delusion of someone who has trained their ass off and is unwilling to let go of the dream, I flew out to Whistler and checked into the race. By race morning I needed help just to walk, had to crawl to get down stairs, and spent every night kept awake with the most excruciating back pain I have ever experienced. I say this with confidence, and I have broken a vertebra. So I switched my goals to that of leading our cheer squad. By the time we were headed for the finish line it took two people to hold me up. Another trip to the ER leading to an emergency overnight flight back to Chicago, I would be admitted into the hospital, and not see my home for 3.5 months.
At the worst I was paralyzed from the chest down, with trouble speaking and swallowing, limited use of my hands and arms, and a breathing capacity cut down by half. I would lose more than 20lbs of muscle. I was in constant, excruciating pain. There is no question that being an athlete saved my life. One of the biggest worries with Guillan-Barre syndrome (a diagnosis that would eventually be changed to the chronic form: CIDP) is losing the ability to breathe. This is an autoimmune disease where the body attacks the nerves, disrupting muscles’ ability to function. Without the monstrous lung capacity training had created I would have been on a respirator. Without the muscles I had built through training I’d still be in a wheelchair instead of walking either unaided or with a crutch.
That’s not to say that I didn’t need every minute of treatment and therapy I received both during all of my inpatient hospital stays, and outpatient recovery. I came into this illness with what I thought was a first-hand point-of-view on healthcare, but I know now how little I had previously understood. I am a faculty member in the Northwestern Medical School who has now spent weeks paralyzed and in pain in the Neurology Department. I am a research scientist at the Shirley Ryan AbilityLab (SRALab, formerly the Rehabilitation Institute of Chicago) who lived, sweat, and cried as a patient on her own floor. In doing so I now understand better than ever how critical research advancements are to improving the recovery prospects for patients. There are so few funds available for research in rare disease – and it is new research that pushes forward new advancements. The two most common and effective treatments for GBS|CIDP have been around for decades. The dialysis-like plasma exchange treatment I rely on was state-of-the-art in the 1960s. Studies that investigate rehabilitation therapy methods for GBS|CIDP are few and far between. Having nearly every question you ask as a patient be answered with “we don’t know” is a terrifying place to be. We can do better.
So here I am. I’m getting stronger every day, but at best am about 2/3rds of the way back. I’ve been riding my bike nearly every day since Thanksgiving. I’ve been working with my Crossfit coaches since the day I was released to rebuild strength, coordination, and balance. And of course, I’m running. I am lucky as hell. Two months after we started with harnesses and air pressure support I was able to start unaided treadmill workouts that alternated running and walking. After almost 6 months of illness, recovery, and rehab, I was back to work again January and ran my first road race – an 8k- in March. My coordination is crazy. I’ve lost nerve innervation to some of the muscles of my feet and calves – they are atrophied, but I can still get them to do work. All day, every day, since that fateful day in July my feet are an insane combination of pins-and-needles, stabbing, burning pain and numbness. It feels like horrible frost-bite – as if they are frozen blocks that just came in from running a 22 miler in sub-zero temps and they are starting to do that painful thaw. All day, every day.
The Chicago Marathon has been a mainstay in my life for the last 16 years. There was no question that Me Being Me meant running, and the best way I know how to celebrate running in this city is to “Run like el” on the first Sunday in October. I am running my 11th Chicago marathon to say thank you to all of the therapists, staff, and friends throughout this city who have been integral to my recovery and ongoing disease management. I am running the Chicago Marathon because I can. I am running because there are so many that can’t. Or don’t know that it is possible. I am running to raise money for all of us – to fund the research that will lead to better understanding of our rare diseases, and the treatments that come from knowledge. I know how hard it is to secure funding to research for even the most prolific diseases in our culture. It’s what I do for a living. The scientists and therapists trying to tackle the most difficult questions and complex cases in rehabilitation medicine are working on GBS|CIDP. They need our help. I need your help.