Because of Charcot-Marie-Tooth disease, I’m always a bit wobbly whenever and wherever I walk. But if you think I look unsteady walking on pavement, you should see me walking on a sandy Carolina beach.
For me, it’s like trying to drink a too-thick milkshake through a too-small straw. I work really hard while making very little progress. And I probably look somewhat comical doing it. Yet, I still find the experience nostalgic and comforting in its own way.
The beach always reminds me of childhood. When I was a kid, like many folks in central North Carolina, my family would take a trip to the beach almost every year. However, unlike many others, who would take their trips during the summer months, my family was always more likely to go during winter.
As a child, I never really minded it, because the simple fact that the hotels had cable television was a treat enough for me. However, I did think it was odd that we weren’t like other families. I always assumed my parents adopted this practice to save money, as hotel rooms are oftentimes cheaper during off-seasons.
Now that I’m a little older, I think somewhat differently. And I wonder if my parents didn’t just do it because of their frugal nature, but also because they were discerning in their taste. They never cared about swimsuits or sunbathing or splashing in ocean waves. No, they loved the sunrise on the ocean horizon, long walks, and moments of quiet contemplation — things that big summer crowds would only diminish.
To this day, I always associate the beach with those childhood trips. And when I think about those times, I remember to pursue the things I find important and meaningful to me, not necessarily what’s popular and trendy.
A couple weeks ago, I decided to take a solo day trip to one of North Carolina’s beaches. I had gone two or three years without visiting, and my body was craving a salty ocean breeze, the sound of waves, and the way the vast ocean can make you feel small.
It was a cool and windy day, much like the winter trips from my memories. I spent the day reading with my feet in the sand.
It was really, really nice.
At the beach I visited, a local nonprofit made sure there was an accessibility mat available every summer. The wide plastic mat lay on top of the sand and encroached into the middle of the beach. It provided an even surface, large enough that it allowed folks in wheelchairs and with limited mobility to better enjoy the beach.
Thus, at least during the summer, as long as I stayed on the mat, I didn’t need to wobble as much as I do on the open sand. It was a gesture I always appreciated, even though I never really took advantage of it.
Recently, I heard that state officials may no longer permit the nonprofit to place the mat on the beach every year for fear of disrupting the wildlife. And although I’m sympathetic to the needs of local wildlife, it’s a bit of a shame.
Because although I don’t consider myself much of a “beach fanatic” like some other North Carolinians I know, I recognize how much of an impact those childhood trips to the beach have had on me and how much they have taught me.
The steps I’ve taken while “wobbling on the sand” remind me that a step forward is progress, no matter how long it takes or how small it is. The way my arms flail as I try to maintain balance reminds me not to take myself too seriously. And the growing calluses on the side of my right foot that deaden the sensation of sand against my feet serve as reminders to never take things for granted.
Indeed, it would be nice if everyone had access to a beach — to learn, to meditate, and to develop their own memories and connections. I’m certainly appreciative of the time I’ve spent on the sand.
Note: Charcot-Marie-Tooth 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 other 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. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.
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