Page 2 - CMTeen_Volume2_Issue1

Swimming with Dolphins, Finding New Friends

By Erin Black*

Before March 18, I had never met anyone else like me. Meaning, I had never met
anyone who wears big chunky braces, falls down and faces the other terrible and unique
challenges of CMT. Swimming with the dolphins at the Miami Seaquarium was great,
but meeting other people who share my disease was even better.
My adventure began in January. I was scrolling through my social media feed when I
stumbled across a beautiful picture of palm trees posted by the Charcot-Marie-Tooth
Association (CMTA). I was immediately interested, warm weather and the CMTA being two
of my favorite things. The post was about a CMTA Patient/Family Conference in Miami.
Reading through all the information, I soon realized how badly I wanted to be there.
Unfortunately, I am only 15 years old, with not much of a budget. My wonderful family,
including my amazing Aunt Peggy, agreed to help me get there.
On the day of the Dolphin Odyssey, my family dropped me off in the hotel lobby, where
I met a group of 15 kids and chaperones. We started off as strangers. The only thing I
really knew about these kids was that they were around my age, lived in many different
places and, most significantly, had CMT. We hopped (or should I say slowly helped each
other) into a big van and headed toward the Miami Seaquarium. We were warmly
welcomed and ate lunch while learning about each other. The conversation flowed
surprisingly well: When I mentioned physical therapy to the table, everyone moaned and
groaned. That is when I realized, “These are my people.”

After seeing several exhibits and a whale show, it was time to meet the dolphins.
We changed into wetsuits for the swim. Taking off our braces and getting into the cold
pool water was hard for almost all of us. That is the amazing part: I was not alone for once
in my life. It was okay to struggle because everyone else was struggling too, so we just
helped each other and had fun doing it. After we changed, we got in the water with the
dolphins. Swimming with these crazy adorable, yet extremely intimidating, creatures was
incredible. We kissed them, shook their flippers, splashed and played. Just being in the
presence of the 400-pound dolphins was wonderful.
After spending time with the dolphins, we changed into dry clothes and headed for a
luau-themed beach party. On our way, we talked about the perks and struggles of living
with CMT. One of the chaperones asked us each to talk about the best thing about
having CMT. To be honest, I had never thought about it before. I said that overall, CMT
makes me stronger, makes me the person I am and makes me realize how blessed
I am to have such amazing friends and family. Finishing the night off at our luau
was the perfect end to a perfect day. We drank mocktails (non-alcoholic cocktails)
by the ocean and ate what I like to call “fancy kid food.”
It is hard for me to put into words what the day meant. We all started as awkward
acquaintances and ended the night as unique friends. I even met my online friend
Julia for the first time. She wasn’t the only friend I made. In just 10 hours, we all became
friends. To see and hear how CMT affects all these amazing kids made me feel grateful
and appreciate what I have. The chaperones with CMT inspired me to get involved and
reminded me that this disease should not and will not define me.

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