At the resort, I found a spot where the cement path was very close to the shoreline. The lapping waves, so blue that they seemed visually edited, steadily crashed onto the sparkling sand. I had the option to rest in the shade under the nearby cabana, but I preferred to sit in the direct sunlight. The heat was not overbearing, and the sea breeze kept cooling me and reminding me that I wasn’t in the sticky humidity of Louisiana anymore.
The coziness of the atmosphere enveloped me. With a chuckle, I realized a truth that made me feel like a hypocrite: I’m not a big fan of the beach.
That sad fact is most likely entirely associated with Friedreich’s ataxia (FA). Sand and wheelchairs do not mix. There are beach wheelchairs to rent, which are very convenient. For me, though, a proper trip to the beach is lacking if one does not venture into the water. The waves call to me and invite me in, but I know that immersing myself and then getting back to the shore, with the constant ebb and flow of the waves adding to my biological disorientation from ataxia is … trying. It would not only be difficult for me but difficult for whoever helps me.
Accepting help from others, even now in my moderately progressed disability, is something I try to avoid doing. I blame my grim stubbornness.
As I looked at the picturesque scene of the sparsely populated island, my walkie-talkie, which my family used to communicate internationally, crackled to life.
“Bug?” Mom said, using a nickname she’s called me since I was a baby.
I pressed the button to respond. “Yes ma’am,” I realized then that she is one of my greatest sources of help — even when I don’t ask for it.
It was Christmas Day, 2017, and I thought everyone had finished opening Christmas gifts. But Mom had one other surprise: She handed out plastic Easter eggs to each of us — me, my two sisters, and my two brothers-in-law. In each egg was three strips of paper with a different letter on each. We all put our letters on the table to unscramble the message. I’m thankful my sister figured it out because I had never heard of the words it spelled out: Turks and Caicos.
“It’s been a rough year for me,” Mom said. “I wanted us all to go on a family vacation together. Bug, I know you’re not a big fan of the beach, but I hope you come with us.”
Mom’s rough year began with a spot the doctors found on her pancreas, which turned out to be cancer. She immediately began intense treatments — both chemotherapy and radiation. After long months of increasing sickness and fatigue, she was declared cancer-free. She stopped the treatments and slowly but surely became healthier than ever before. This is amazing because pancreatic cancer is one of the most lethal cancers there is.
I decided then that no matter what stupid insecurities I had about the beach, I would go. For her.
Since my FA diagnosis, Mom has never wavered in supporting me. She’s gone above and beyond to ensure I had need of nothing. She smoothed my transition to a wheelchair after high school, to college, to grad school, to trying (and failing) to find a job using my degree, to settling in working at my family’s company. She has been my North Star, always there, always watching, always guiding.
Mom, I found myself, because you found me first.
On the beach, near the glistening sand, I heard through the walkie-talkie, “Just checking on you, Bug.”
I smiled. “OK, Mom. I’ll see you soon.”
I put the walkie-talkie out of sight on the side of my wheelchair and realized how lucky I was, and am, that I always have her support, even if I stubbornly don’t ask for it.
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.
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