Name: John Cernosek
Age: 38
Where do you call home? Silver Spring, Maryland
Education/Career: Bachelor of Science in Decision and Systems Sciences from Saint Joseph’s University.
Who do you live with? My partner, Yiomarie Rodriguez, and I live in an apartment.
What is a typical day for you? A relaxing morning with news and Jeopardy from Alexa; coffee, banana, cereal. Two or three days a week I go to the gym in my building. I move through my own version of physical therapy in the style of about a million different symptom-battling activities in the apartment. I will talk about them soon. I read, write, and research most days for a pamphlet I’m hopefully wrapping up soon. Yiomarie and I eat dinner and watch TV in the evening. At night, I shower and water the garden; or work on a puzzle; or putz around with headphones blaring.
How long have you known you are living with FA? I was diagnosed in February 2003 at age 19 via blood test.
Describe an adaptation and/or transition you have had to take due to living with FA. It’s been ongoing for about 13 years. I got my first set of wheels, a manual wheelchair, in 2008. I still have it, and I’ve never been comfortable in it. The first couple years, at least for short distances, it was easier to walk than use the wheelchair. I was taking classes on a big campus, and had decided that the quiet of the summer semester would be a good time to transition from “Guy Who Clumsily Plods With A Cane” to “Guy In A Wheelchair.” One time, I rolled into class for a test. When finished, I automatically stood and walked my paper to the front of the room. I later thought how people who didn’t know anything about what I was going through, everyone, must have found it so strange. I moved to a city 11 years ago, and began using a scooter about town, and a walker inside. That’s more less where I am today. I have a Whill Ci2, which can go anywhere, inside or out. I also recently got a U-Step walker. It’s different mechanically from other walkers I’ve had, so I’m in a period of adjustment – super slow and deliberate. Not too different from before. I try to ambulate down the hallway a couple times a day.
What do you like to do to stay active and what type of exercises work for you to stay strong? I have a bike in my room, a gym in my building for weight lifting, and a floor core-stretching routine. I walk in my apartment with a walker. I do speech exercises. I play the piano to help with dexterity. WiiFit is in the rotation. Something everyday. My favorite exercise is swimming. The water is liberating. The strokes, I swim breaststroke, use every muscle. I’ve been swimming my whole life. Not since the pandemic, and now the pool is being renovated, so my triumphant return will wait until spring.
Do you have any hobbies or special interests? I created and moderate a group on Facebook called Cannataxia — an awesome community for folks interested in medical cannabis. I make collages of cool animal pictures I cut from National Geographic magazine. An internet company converts them into puzzles I give my nephew for Christmas. I tend a little garden on the balcony. Strawberries were the big cash crop this year. Eight strawberries! I love baseball, but the Orioles are horrible and nearly unwatchable this season. I water ski and snow ski with Baltimore Adapted Recreation and Sports a few times a year.
What is a good trick to make daily life easier? Live in a city, ideally one recently built. It’s not a simple trick. Where I am, Silver Spring, just outside Washington DC, every essential and more is half a mile or less from my apartment. The Metro station is across the street if I want to visit my sister; or take a field trip to the Smithsonian. Because it’s a modern city, everything meets ADA code. I seldom fret over accessibility. As soon as you leave the building, you’re on the scene interacting with people. This helps with feelings of isolation and depression.
When FA gets you down, what do you think/do to feel better? Deep breathing exercises. Practice mindfulness. Briefly cry. Talk Yiomarie’s ear off.
What is one way living with FA has POSITIVELY affected your life? Because of FA, I have a unique perspective, and a lot of wisdom; and a lifelong membership to a few great communities.
What is a favorite motivational quote of yours “Your attitude should never go into a slump. Your effort should never go into a slump. There are certain absolutes you control.”- Former Baltimore Orioles Manager Buck Showalter.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Read “Reclaiming Natural Movement,” by Dr. Tom Clouse. Twice. The material in that book has changed my life in myriad ways over the last 12 years.
“I have FA but FA doesn’t have me.” What does this statement mean to you? How do you live your life in the face of adversity? I never lose sight of my luck — my family, my upbringing, my genes (FA notwithstanding; though even there, I’m spared several symptoms.) I have endless reasons to always try my best. That said, it’s not easy. Sometimes it’s overwhelming. I’d rather not be living with all this. I didn’t ask for it. Here I am. Either find some joy and purpose or don’t. The world will go on. That might seem cold. It’s motivation for me to keep doing what makes me happy. Every day I wake up with two pursuits: physical and intellectual. The physical is all the exercises I mentioned above. The intellectual side is reading, writing, following the news; engaging with my communities; anything that requires critical thought. If I can focus on my running micro-goals, and allow myself plenty of personal time, I’ll have a good day. String enough together, and it’s a positive lifestyle. When I fail, there’s another opportunity tomorrow.
Tell us a little more about you… I have a nice magnet collection from adventures dating back to 2011. I will spend too much time in any reputable gift shop. My top three fruits are blueberry, banana, and pineapple. The first day of Intro to Macroeconomics, the professor, who literally wrote the book we were using, started the class by asking, “What makes the world go ‘round?” He called on an eager chap who confidently answered, “Money.” “Who agrees?” Said the professor, and most of the students raised their hands. “No, you’re wrong.” Dramatic pause. “Money drives the economy. Love makes the world go ‘round.” One of life’s most important lessons.
Interview by
Andrea Kiess