I look forward to lazy Sundays. Nothing feels more familiar, more like my childhood, more like home. I brush aside any work or obligations, finding comfort in choosing to do nothing. So, whether I’ve been super productive and finished all my work earlier in the week or because I choose to ignore deadlines, I give myself Sundays to enjoy myself, to be home.
On a recent Sunday, I treated myself to a Coke and a bowl of kettle corn. The popcorn’s sweetness almost masked its slightly burnt taste. Apparently, I’m not much of a cook and I can’t even pop popcorn well. I set my snacks on a table within reach, wearing my usual lounging attire: a T-shirt, sweatpants, and my comfortable red sneakers. Dressed in my lounging uniform with my lazy-day snack at hand, I parked my wheelchair next to the sofa and turned on the TV.
A familiar black-and-white movie came on the screen. I struggled to identify the movie. It didn’t dawn on me until the main character called out “Auntie Em!” that it was “The Wizard of Oz.”
Of course, I thought, and continued watching until the film transitioned from grainy and black-and-white to grainy and colorful. Films wouldn’t have vibrant hues until years after this one was made, but the shift is still pretty dramatic.
Dramatic shifts. I can relate to that.
I lost interest in Oz shortly after and switched to my usual, Netflix, but my mind dwelled on the main character’s plight. In the strange new land she found herself in, she longed for comfort, for familiarity. All she wanted was to go home.
Now it seemed uncanny how much I could relate. Shortly after a sudden and unexpected diagnosis, Friedreich’s ataxia changed the world entirely for me. Before, everything seemed dull, humdrum, routine, predictable. After my diagnosis, the world suddenly became much more diverse. Instead of seeing the interest in that, the preteen Matt was unspeakably overwhelmed. I looked around to see what I could hold onto for support while walking, and made sure there was something to hold onto in case I came across steps. I rearranged my daily routes based on which path was least taxing to maneuver.
In this strange new land, I longed for the familiarity of how things were before. I wanted comfort, familiarity, routine. I wanted to go home.
I didn’t know what to do. I was getting more and more stressed and unhappy with my current circumstances. I needed someone or something external — better than and apart from me — to give me answers and peace. Throughout my life, this solution was known by different names. Sometimes Jesus. Sometimes understanding. Sometimes God. Most of the time, I knew it as a cure. Whatever it melded into, it always held the solution. My job was to seek it out.
I was off to find the answer. Honestly, I’m still looking. My movie hasn’t reached its end yet. Life with Friedreich’s ataxia doesn’t get less overwhelming than it was at first, but the shock becomes easier to bear over time. We adapt and we continue.
At times in my journey, I have doubts and insecurities. Regular readers of this column know that all too well. I sometimes am ashamed when I cannot fully comprehend the research information regarding Friedreich’s ataxia, which I know is essentially important to battling this disorder. Or sometimes I am worried that I don’t appear welcoming if I feel like retreating into myself, forgetting things like my best friends’ birthdays or schedules. I especially am ashamed when I get entirely overwhelmed and fearful of the future. Shouldn’t I be braver?
However, when I am most humbled I find that even in my imperfection, maybe I am doing pretty well. Maybe I actually had the brains and the heart and the courage all along.
Maybe only looking for something external to save me overlooks the fact that I am trying to do better. It seems that sometimes that’s enough. You don’t need to be a wizard to know that.
So, for now, I’m OK. I may get overwhelmed by life’s complexities sometimes but I always have my lazy Sundays. I go to get another Coke. Why not? I listen to Toto on my smart speaker. I am home.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.