Meet MS Warrior Caryl Pawlusiak
Written by Caryl Pawlusiak
I wasn’t a stranger to MS when I was diagnosed in 2006. But I also wasn’t a runner. I didn’t predict how MS would change me, and not even my family couldn’t have anticipated the transformation that has come about since my diagnosis.
I am lucky that it took just one bout of optic neuritis to get my diagnosis and begin treatments. Perhaps that is due to my family history. I had heard of multiple sclerosis because my aunt has MS. I didn’t know much more than the abbreviation, so I wasn’t worried. I even joked about it with my mom when she worried that could be the cause of my partial vision loss. The scary part came when I had to go into the hospital for IV steroids and I started learning what MS could mean. At 24, I am grateful I didn’t have the internet at my fingertips like we do today because that would have been a terrifying rabbit hole! My first neurologist told me that I could never change jobs for fear of losing insurance and I would also need to stay free from stress or illness. As a first grade teacher these directives seemed impossible, and since teaching is the only thing I ever wanted to do, I found a neurologist I liked better. My second neurologist made MS much less scary and even joked that I actually only had singular sclerosis since I was diagnosed with a single onset of symptoms, but with the number of lesions present in my brain the medical world would accept it as multiple sclerosis. Lucky me.
My diagnosis didn’t change many things in my life. I was a newlywed (in sickness and in health took on a new meaning!), a new teacher, and a first time homeowner. I was still figuring out how to be a wife, teach full time, and take care of an old house. I knew nothing about diet, didn’t exercise unless it was the new year, and my only running story was when I faked an injury to get out of running the mile in high school. Other than daily injections, MS didn’t affect my day to day life. In the heat of NH summers, I noticed more exhaustion that slowed me down and made me hide inside with air conditioning until I cooled down and could think straight. Otherwise I don’t remember letting MS be more than a diagnosis I had to share when I was updating my medical history.
It took 3 years before I started sharing my MS diagnosis with anyone outside my family or coworkers. In the beginning I was scared, thinking the parents at my private school wouldn’t want a teacher with a neurological disorder. But I had committed to doing Walk MS with my uncle and father to raise money for the National MS Society. My school was generous with so many things so I took a leap of faith and shared my diagnosis….with the entire K-8 community! Needless to say, I raised much more than I ever thought possible and enjoyed the first of many Walk MS events.
My father joined me for every MS walk, that first half marathon and many more races after. We had fun running through all the seasons in NH–cold and snowy winters, rainy springs, hot and humid summers, and brisk falls. Friday nights often involved a text or a call asking “how many miles tomorrow?” At the end of many half marathons he would turn around at the finish line and ask “Can you imagine turning around and doing it again?” The 26.2 miles of the marathon seemed like it would be so much harder.
In 2018 I started thinking about the possibility of 26.2. Other than when the hot summer days took me out and caused me to retreat to the AC, I didn’t think much about my MS. Outside of MRI’s every other year thanks to no new lesions and injections that were now just 3x a week, MS was still just something I shared with others and hoped wouldn’t progress. I enjoyed winter running and made sure to run early if I had to train in the summer for a fall race. In 2019, I entered the lottery for the NYC marathon but didn’t get in and was debating what other option would be the perfect first marathon. A few days later I picked up the NMSS Momentum magazine and read an article all about Cheryl and the marathons she had ran and the team she had created. If she could run a marathon on every continent, I could definitely sign up for Richmond to run my first 26.2 with her and other MS warriors!
RAMMS was the MS support group I didn’t know I needed. I’d never connected with many others with MS, because I didn’t see myself in their stories. Finding so many active MS champions and hearing stories that aligned with mine, or determined individuals who wouldn’t let MS define them, was the story I was living and connected with. I was honored to wear the RAMMS shirt and anytime the miles got hard (mile 18 specifically!) I tried to remember “I get to do this, and I’m stronger than MS with every step.” And now, instead of doing Walk MS to raise funds and awareness, I get to do what I love (running!) and still raise money for the National MS Society with my annual marathon.
I’ve loved running my one and only marathon each year with RAMMS in the fall when my schedule allows me to join the team. After crossing my first marathon finish line in Richmond, I chased a marathon PR in Indianapolis, enjoyed starting off a too hot marathon in Baltimore alongside my father running the 10K, and last year decided to run a half marathon so I could celebrate my husband Jake’s marathon. I started the race in Hartford with Jake and finished with my dad—it was great to cross that finish line together for the first time in years. We barely took time for a picture before hustling out to find Jake on the marathon course and cheer him on to his first 26.2 finish. I’ve always loved seeing the RAMMS shirts on the course, but with running a half I was able to cheer so many more RAMMS members across the finish line that day!!! I saw purple shirt after purple shirt and loved seeing how the team has grown during my 5 years with RAMMS.
Running was never even a thought when I was diagnosed with MS 19 years ago. Not even close to a possibility. But running brought me to Cheryl, and Cheryl made me part of RAMMS, and I have MS to thank for that. Since joining RAMMS I often talk about my upcoming marathon with my MS team. (Looking forward to Grand Rapids now!) On group runs I’ve met other runners with MS, and I know without this team we wouldn’t even be chatting about our diagnosis. I continue to share my MS story in person and on social media so that it will give someone with MS hope that their diagnosis doesn’t have to be what the textbook or one neurologist says. I keep running because I know how lucky I am that my brain is letting me continue to move when others with MS can’t. And I keep coming back to RAMMS because of the magic that Cheryl has done in bringing us all together and the hope that one day we won’t have to raise money to help find a cure.