The 2018 race was one of the most amazing experiences of my life. I have run marathons to achieve only personal goals in the past, and there is no question that running for a cause that you believe in makes the experience infinitely more powerful. As an AbilityLab patient, tackling this challenge was both a testament to the incredible care I have received, and a way to personally help ensure we continue to provide the highest quality of care to everyone who comes through our doors. In every moment where the pain seemed too much, or the miles still remaining seemed daunting I thought about our patients who are fighting with everything they have just to regain the most basic functions. The least I could do was to keep going. For them.
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My name is Lynn, and people keep telling me I’m a survivor. That I am strong. Personally, I think I’m a pretty 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 in Whistler, British Columbia, 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. The numb tongue was my breaking point I headed to the doctor and after days of testing was released with a note saying that “there was nothing neurologically wrong with me.” I will eventually frame that note. I left the hospital 12 hours before my flight out to Whistler 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 and had to crawl to get down stairs, 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. No question. Without the muscles I had built through training I’d still be in a wheelchair instead of walking unaided at home, and with a crutch or two in public depending on the environment.
That’s not to say that I didn’t need every minute of treatment and therapy I received both during 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. I now consider myself a stage hand that has been suddenly thrust into the spotlight. I am a faculty member in the Northwestern Medical School who has spent weeks paralyzed and in pain in the Neurology Department. I am a research scientist at the Shirley Ryan AbilityLab (formerly the Rehabilitation Institute of Chicago) who lived, sweat, and cried as a patient on her own floor. Just eight weeks before my symptoms appeared, the AbilityLab moved into our new home, the first-ever “translational” research hospital where clinicians and scientists work together in the same physical space applying research to rehabilitation medicine. My lab was still being unpacked when I moved in as a patient on the other side of the floor. As such, the last year has been an eye-opener. I never intended to be a living embodiment of the AbilityLab mission to integrate research and clinical care, but 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 started with the aid of an AlterG treadmill and some creative, hard-working therapists. I am lucky as hell. Two months after we started with harnesses and air pressure assistance 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 on January 2nd 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 as hell, 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 for me recovery 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 at the AbilityLab and 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 so many others can’t. I am running to raise money that will benefit us all. I know how hard it is to secure funding to research better rehabilitation methods for even the most prolific diseases in our culture. It’s what I do for a living. Our scientists and therapists tackle the most difficult questions and complex cases in rehabilitation medicine. They need our help. I need your help. Please help me support the great work done by a hospital that has helped rebuild my life, every step of the way. The AbilityLab is dedicated to pushing the limits of human ability they need our help to make that happen for every patient who comes through the door. Even me.