Meet MS Warrior Jeana Clary Nozykowski
Written by Jeana Clary Nozykowski
“You see these spots on your brain?” the doctor squinted at me. This can’t be good, I thought. Nothing she says after this is going to be good. I was cold sitting there on the hard examination table, but the goose bumps were more likely from the fear of what she was about to say next.
“You have MS. Multiple sclerosis. Do you know what that is?”
And there it was. The only thing I knew about MS was that Annette Funicello had had it: she was one of the original Mickey Mouse Club members and then a 60s movie star as an adult. She’d been in a wheelchair for years, before she died as a result of complications from the disease. Other than that my knowledge was sketchy, at best. My eyes began welling up with tears. I didn’t want to be in a wheelchair! I’d barely turned 30! What was happening?
Just a couple of weeks prior, I thought I’d just needed glasses. I’d had kind of blurry vision, like looking through fog out of one eye. Everyone else in my immediate family already wore glasses, even my much younger sister. Big deal, I thought. I’ve gotten away with 20/20 vision this long, but it’s finally my turn. But the ophthalmologist revealed that my eyes and vision were just fine. It was my optic nerve that was the problem. I had optic neuritis, and he said I would need an MRI and a referral to a neurologist. And not long afterwards, there I was in her office, the bomb had been dropped, and visions of wheelchairs and walking canes danced menacingly in my head.
It took some time to get over the initial shock, but a few doctors and more confirming tests later, I’d learned a lot more. I was assured I wouldn’t necessarily be in a wheelchair, and it certainly wasn’t going to kill me anytime soon. I soon began a course of medications that had not-so-pleasant side effects, not to mention the fact that I had to give myself injections. Symptoms came and went, mostly mild, none of them serious. They say that MS is, for many, an “invisible” disease. Other than sometimes intense fatigue, the symptoms I experienced were most often known only to me. Other than to closest friends and family, I kept my diagnosis to myself, and preferred it that way. I didn’t want to be perceived as having a “weakness.” If I ever had to call in sick, I didn’t want people to think I was using MS as an excuse to miss work. I’d brush off fatigue or vision issues as “getting older” with a little laugh. It was like having a dirty secret.
Fast forward many years, and I’d been managing the disease pretty well. I would tell myself that, on a scale of annoying to debilitating, my symptoms were decidedly in the “annoying” category. An occasional tingling arm, blurry vision, an overactive bladder…. not trouble walking or talking, NOT Annette Funicello. Still, not many people knew I even had it. I continued to let it be invisible.
And then something happened that would change my life, yet again, as I’d previously known it. I learned about an organization called Meat Fight that, aside from being an all- you-can-eat-and drink BBQ and beer extravaganza that raises money for the National MS Society (making it a no-brainer for this foodie to participate in), also donates bikes to people living with MS. After two years of participating in and donating to the fun and gluttony, in 2017, as one of the lucky recipients of my very own “Meat Bike,” I took on the challenge of training for my first Bike MS and 150 miles over two days. Little did I know, it would be More Than Just a Bike. I quickly became a part of a community of MS Warrior riders and supporters who are now like my family. Cycling was a learning process that was sometimes hard, but mainly it was FUN. I was getting out and doing something for me, to better my health and my MS, and I was having a blast doing it.
Not long after completing my first Bike MS, as I continued to ride regularly, I was asked to substitute for a teammate who was to take part in an Ironman 70.3 relay in Galveston as part of Project 13, an offshoot group of Meat Fight that sponsors those living with MS to do a triathlon, or run a half marathon or marathon distance. I completed that leg of the relay along with other badass MS warrior relay teams and individual athletes. It was exhilarating! Everyone then tried to convince me that I’d want to do the whole thing someday and a half Ironman on my own. “No way,” I told those people. “I’m not a runner. I don’t run. I’d rather gouge my eye out with a sharp stick than go for a run.” But you know what? They were right. In Galveston I got caught up in the electricity, the excitement, the absolute joy on athletes’ faces as they crossed the finish line. I saw many of my teammates who also had MS do these epic things. They’d inspired me and I left Galveston thinking it wasn’t impossible.
With the great training of Kelly Williamson, who had coached my cycling for the 70.3 relay, I decided to go for it and signed up for my first 5K; I did it as more of a walk/run, but then decided it wasn’t terrible. I didn’t die. I signed up for another 5K, which was faster and more running than walking. Then I signed up for a 10K, and then another one. Eventually, a sprint triathlon, then Olympic distance tri. I just kept increasing the distance goals bit by bit and, to my continued amazement, I got a little better and faster each time and was having FUN. It wasn’t like poking my eye out at all!
In December of the same year as Galveston, I completed my first half marathon with Project 13 in Dallas, step-by-step and, for the finish, hand-in-hand with fellow MS Warrior Angela Brandt! I was on cloud 9! Shortly after that, I saw the call for runners to participate in the RAMMS event in Richmond. I had heard about Cheryl and RAMMS through some amazing folks I met at a Bike MS in California. So, while still caught up in the euphoria of completing a half marathon, I decided, “Why not try for a marathon next?” If I could go from my Urst 5K to a half marathon in less than a year, maybe I could go from my Urst half to a full in less than a year! All while training for that 70.3, mind you! (Man, I gotta quit drinking this Kool-aid!)
Richmond was an experience I will never forget. I was nervous about finishing, but my main goal was to have fun. I was elated that my Bike MS buddies from Texas, DJ and Michael Moberly, were going to be there too, and DJ and I would be running our very first marathon together! We had so much fun running together, and crossing that finish line was incredibly emotional! I think part of it was because of how much running has continued to surprise me. I never saw myself as a runner, even as I started completing longer and longer distances – and even before my diagnosis, I would have never in a million years thought that I’d complete a MARATHON! But just as I’m not letting MS be my “dirty secret” anymore, I can confidently say now that I AM a runner!
At the RAMMS team dinner in Richmond, one of the speakers talked about her experience and it brought me to tears because it mirrored mine so well. She said, “When I was first diagnosed with MS, all I could think about was how much it would take from me. Now I reflect constantly on how much it has given to me.” Wow! How true that is for me! What I first perceived as weakness has become strength. It’s not a walk in the park, by any means; some days I feel fine and healthy, but others I feel fatigued or have pain or numbness or other symptoms. Heat affects me tremendously, and training in Texas summers is HARD. But whenever any MS symptoms rear their ugly heads, I remind myself of how far I’ve come and how strong I am. Just as importantly, I remind myself how grateful I am that I can do things that many who have MS cannot: I swim, bike, and run for all of them, and I will continue to do what I can, as long as I can, to raise awareness and fundraise for a cure for us all. I may have MS, but it doesn’t have me.
Take that, MS.