What I’ve Learned From Beach Trips and My Wobbly Time on the Sand

Young Lee avatar

by Young Lee |

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Rare Disease Day, beach, shoes, year, lessons, legs, describe, light, being present, exercise, grandmother, wariness

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.


Tracy Roberts avatar

Tracy Roberts

Lovely piece. I smiled visualizing the arms flailing, and for me usually a fall or two (thankfully the beach has built in fall protection, i.e. sand), lol

Cyndi Michener avatar

Cyndi Michener

As a beach lover, native North Carolinian now living in Virginia, and also a wobbly CMTer, I appreciated your article. The associated news story is very upsetting personally. As my disability progresses, lack of ability to enjoy the beach is one of my greatest losses.

Dawn avatar


This article hit home! I love the beach, I love the sand! I live in Indiana so any beach is a treat! I recently visited Daytona Beach and I was able to walk the shoreline. The sand is compact, flat and perfect for us CMTer’s! I was able to walk with my head held high, not having to worry about looking down avoiding a trip or fall! My feet did not hurt! I love every beach that I’ve ever visited but Daytona Beach is where my feet are the happiest!!!!! Keep this in mind when planning a beach trip! You will not be disappointed. If your body gets tired you can jump on a golf cart or even get in your car and drive the beach! Simply BLESSED!

Barbara Hofer avatar

Barbara Hofer

My son is 50 years old we found he had this at 9 years old he works 3 job at one time but that was when he was younger he still work today .I never made he had anything wrong with neither did his others sister and brother we always to make him stand on his two feet he having more trouble as he getting older he had toes remove but like I said he still working and I’m very proud of him.


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