“I began my vacation today,” Jake told me over video chat. That lazy Sunday seemed like a great start to a vacation. It was a week after I had returned from Turks and Caicos. I had no plans for the day, and I liked it that way. I was ready to be lazy though I was looking forward to returning to work on Monday. I love the part of me that is an adventurous wanderer, but I cannot deny the part of me that relishes the dependable, the familiar.
As I began to settle into my normal routine, Jake was doing the opposite. We met the day after my rainy ride on the catamaran. I parked my wheelchair next to the rows of lounge chairs surrounding one of the many pools at the resort. The sun was beating down on my head, which would have been uncomfortable if not for the constant sea breeze from the nearby Atlantic. My feet were wrapped awkwardly in a towel because I realized grimly that my feet still do, in fact, get painfully sunburned. I raised them up on the nearest chair, leaned back in my wheelchair, and was about to try to relax in that position.
Apparently, other people looking at me could tell that my position wasn’t ideal. A voice with a Filipino accent asked, “Would you like to sit in a beach chair?” I opened my eyes and saw a guy about my age, wearing blue-tinted sunglasses and the cap and collared shirt of the resort employees.
I felt my familiar stubborn drive for independence, but I put it aside: I would be much more comfortable lying in a beach chair than my wheelchair.
After he helped me transfer to the beach chair, he went around the pool, doing his job of tidying up unused beach chairs and picking up discarded towels. I took off my sunglasses, closed my eyes, leaned back, and dozed off.
I opened my eyes to Charleen, my personal care assistant, who asked me if I needed anything. I assured her that I didn’t, so she left. As she walked away, I heard her walkie-talkie crackle to life so my mom could ask, “Is Matt all right?”
I grinned. I didn’t hear Charleen’s answer, but I realized how fortunate I was to have my mom, and even Charleen, to give me the help I need, even when I don’t ask for it.
I saw the employee who helped me transfer standing near, so I called him over. He expected me to ask for help getting back in my wheelchair, so he was surprised when I asked for his name. “Jake,” he said, pointing to his name-tag, “like from State Farm.” We talked about our lives, how I was about to return to my home in Louisiana, and how he planned to work three more years at the resort, then return to the Philippines to be with his family and his girlfriend. He told me that he loved his work there, and I told him about Friedreich’s ataxia — my reason for using a wheelchair.
In the middle of our conversation, my nephew Jace and my brother-in-law Derek said hello on their way to the nearby Elmo’s Beach Party event. Jace, excited to see Elmo and unwilling to stop, rushed by us. I almost felt a pang of hurt, but I remembered our night getting ice cream, and laughed. True, I was no Elmo, but Jace loved his uncle, regardless of my wheelchair use.
Another employee noticed that Jake and I were still talking, even though Jake’s shift ended 20 minutes prior. He brought three pink lemonades. Jake introduced him as his friend Arvin.
Drinking my lemonade, I was reminded that all of my personal insights are great, but don’t mean anything in a life spent alone. Not romantically, just socially. People are at their best in relation to others, be they friends, family, or even strangers. I thanked Arvin for the lemonade.
The next day, I again faced the trial of traveling with a disability, then was welcomed home by Louisiana’s steamy humidity, less an oppressive sentence and more a familiar embrace.
A week later, on that Sunday evening, Jake sent me a picture of his catch after he spent the first day of his vacation fishing with Arvin. The silvery flounders seemed very foreign from the local brownish-green catfish.
Even that picture helped remind me that the connection between people is what matters, no matter if they are in your family or across the world, childlike or elderly, abled or disabled. Knowing others makes me better.
“When this hourglass has filtered out/Its final grain of sand/I raise my glass to the memories we had.” –The Ataris
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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