First in a series of reflections on a recent vacation to an amazing resort on Providenciales island in Turks and Caicos.
In the cramped seat of the plane, nothing was going right.
Moments earlier, in the tunnel that connected the airport to the plane, I was hoisted from my wheelchair into the narrow and rickety aisle chair that fits in the row between seats on the plane. Once I was clunked down clumsily in this chair, I was wheeled backward by two airport employees to the airplane itself. There was, and always is, a large step up to board. My feet, not used to being so firmly held to the seat I’m in, constantly flailed out in front of me, making the ride to my assigned seat midway through the fuselage even more awkward.
At least no one but the flight attendants saw this circus of clumsiness, as people requiring aisle chairs are typically the first to board and the last to exit the plane. Because of that, I go to the bathroom in the airport right before I board my flight. Airplane bathrooms are tiny, and it’s not feasible for a wheelchair user to use them. Thankfully, I’ve never needed to use the restroom during a flight. Knock on wood.
All of this fueled my self-pity, as I bemoaned my current state, arms crossed and pouting on the gray vinyl of my seat. As I watched the rest of the passengers fill the empty seats, I remembered what it felt like to be one of them. I used to love everything about traveling. The adventure of it. Having to adapt to whatever unfamiliar circumstances I found myself in.
The erosion of my adaptability is, without a doubt, the hardest aspect of this disease to accept. Even — maybe especially — living with FA, I want my spirit to be adventurous, buoyant. Planning early for accommodations for my special needs is aggravating. At times, it feels utterly defeating.
I arrived on the island in this woe-is-me state, and I took my first look at the special needs room of the resort that was to be my home for the next week. I couldn’t ignore the lump in my stomach, the dry gulp in my throat. This room wasn’t familiar: The bed and the bathroom were accessible but different to me. The bitter truth is that to me — with my subtly progressive disability — familiarity is best. It goes against my adventurous longing, my nomadic self-goal. But my muscle memory in transferring from my wheelchair to my bed, bathtub, or toilet at home goes a long way toward my maneuverability. In an unfamiliar place, I am reminded that I am limited. And I hate that.
I hoped that a change of scenery would help my bad mood. I strolled the resort and made my way to a wooden pier jutting out into the ocean. The sun was setting on the island, and the bright blue sky was beginning to redden. The colors seemed more vivid there than I remember them being anywhere else, from the virginal white sand to the water transitioning from a clear aqua to a shadowy black as I watched.
As corny as it is, I really like twilight — the time when the brightness of the day transitions to the somberness of night. In the final rays of daylight, I saw the different spots of the ocean’s shade — the water was light azure and clear where it was shallow, and swaths of water were dark blue where the ocean floor was deeper. I realized that this was where the water changes — and like the sea, my attitude should shift too.
As I sat in my wheelchair on the pier, I looked out at the pinkening sky. I said something to myself, more of a promise than a statement. “I’m going to make myself be happy here. I’m going to be all right.”
And it turns out, I was. More next week …
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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