The (Dis)Abled Traveler: Lupus Heads to St. John Island

It was a red wine filled Tuesday night and we were halfway through our second bottle. My best friend, roommate and sometimes caretaker Rich, was sitting next to me as I searched for flights to the US Virgin Islands. I say sometimes caretaker because I have a disease called Lupus. The good days make me feel like I can take over the world. But the bad ones leave me feeling like a failure as I can’t even get out of bed. The roller coaster that is lupus wreaks havoc on my body, mind, and spirit. My one saving grace where I seek my sanity is in traveling to new destinations.

Preparing for the destination is probably the biggest thing when going out on holiday. Bringing flat walking shoes, plenty of sunscreen, and always my favorite hoodie. Having either cool clothing for where it is warm, or warm clothing for where it is cold, can be the key to comfort when layered properly. As a rule, I am pretty much always cold. Even 80-degree weather with a cool breeze can send goosebumps straight up my arms. I thank lupus for my non-working inner thermostat.

Everything I do has to be thoroughly thought-out with a back-up plan of “what if?” What if I get sick while I am there? What if I have an arthritis flare-up and can’t walk? What if my face flares up and I am embarrassed to go out in public? What happens to the show tickets for whatever I’ve decided I want to see? Or the non-refundable airline tickets? Should I take my cane or let pride rule my trip and try to get through it on my own? All of these questions are asked before I even pick a destination.

Yet pick one I had, as I was going to see the Caribbean islands for the first time. And so, expressing my desire to “Get the Hell out of here before I lose my mind,” I sought a friend living on St. John Island, and within thirty minutes it was settled. Sun, fun and debauchery were now typed into my calendar.

With my suitcases packed and my cane in hand, we headed for the airport. I was quickly checked in and given a wheelchair for the duration of my time in the airport. I’ll preface this by saying I haven’t used my own wheelchair in over a year and I keep it hidden under a tarp in the garage. To be honest, I hate the sight of it and typically my cane will do. But at the airport I have no pride nor shame. Just a desire to get from point A to point B without killing myself from over-exertion before I get there. This trip to the Virgin Islands was especially harrowing due to the 22 hours of travel time, that I hadn’t realized until the day before the trip. Reminding myself yet again, it’s about the journey, not the destination.

Two plane changes later and I was grateful for two things. One, Xanax, and two, that damn wheelchair. By midnight that evening I was sleeping in the Chicago airport, literally dreaming of the moment I would step foot on the that sandy beach. Having never been to a Caribbean Island, I had no frame of reference other than a few trips to Mexico and my one trip to Maui. None of which came close to what I saw upon landing on St. Thomas Island.

The view from the plane was breathtaking and I couldn’t believe, in my exhausted state, that I was awake and not dreaming. The plane landed in St. Thomas, on what literally looked like a long concrete drive-way with weeds in the cracks. The runway was about fifty feet from the ocean and I was instantly taken aback by the beauty of the water. I climbed down the rickety aluminum staircase, careful not to lose my footing. Then walked with cane in hand around the full length of the airport, unsure of the procedures at this tiny little airport. It was humid and balmy, smelled liked salt water and coconuts, and I was truly in what I would consider heaven. It took about an hour to get my bags and another half hour to get to the ferry. The ride to the ferry took us completely through the city of Charlotte Amelie. Built while under Danish rule and then later sold to the US, Charlotte Amelie is bright and colorful. It is tucked in and around a long forgotten volcanic arch that pushed up many of the islands to where they are today, including St. John.

The thirty-minute ferry ride went by quickly, as I scanned the distant islands and took pictures.  I could see the bottom of the ocean floor long before we reached the ferry dock of St. John Island. Coral reefs surround the entire island and all I could think about was jumping into that water, and not ever coming out. I pulled my sunblock out my bag, a must have for someone who literally gets sick from the sun , “NO, NO!” a man yelled out from behind the plastic shield separating passengers from the ships captain. “No sunblock, it’s bad for our coral reef.” Well, damn. This vacation just took a nosedive. How was I supposed to swim and snorkel without my SPF 5000? I packed five swimsuits all so I could end up wearing long sleeves while I snorkeled. Um, yeah, thanks lupus.

We headed to the beach first, and the waves were like nothing I had ever seen. Quite literally as I was standing ankle deep in the water, a star fish bigger than my hand slowly drifted over. I say slowly because the waves there are almost non-existent. I’ve seen lakes with bigger waves than the ones I saw there. It was the kind of white washed beach that was perfect for snorkeling. I wish I could say I had pictures from under the water, but that camera hung from my wrist without being used once.

Even one blink might have caused me to lose just a tiny bit of this underwater fantasy. Somehow in the back of my mind, I knew no camera could capture the elegance of form that I was seeing underwater. The beautiful colors, shapes and sizes. The way they moved and flitted about, completely unafraid of the human that was stalking them. The coral reef alive, hiding discreetly yet peeking out ever so slowly. I wish I could have spent my entire time snorkeling, but there was so much to do, and so little time to do it.

One night while out walking around, a few people shouted out that they were going to watch the glow in the dark fish on the shore. It turns out they were bioluminescent plankton, and it was like seeing an entirely new world.  We sat for hours, watching the plankton and then seeing the shooting stars in a sky so dark it looked like a black blanket with twinkling Christmas lights peeking through. We sat there until the sun came up.

The next day we traipsed through jungles and sugar plantations galore. Always ending up at a different white washed beach, jumping in for a quick cool off and then heading back to the jungle for the sake of my skin and illness. There was literally a party in the streets, every single night.  Which for someone with sun sensitivity was helpful and awesome.

From celebrating their Independence Day to the Christmas in July party, I have never experienced such a relaxing time filled with so much love and fun. When I got home, I, of course, was on bed rest for 2 weeks while my body cleansed out the rum and the sun, but never lost the fun I had during those 6 days on St. John Island. While Lupus may be my giant roller coaster in life, I’ve come to realize that everyone has some form of a roller coaster they are on. While my dips and lows are treatments and bed rest, my highs are the experiences I have when I am travelling. And I wouldn’t change that for the world.

The Dis(Abled) Traveler shares how her lupus did and didn't affect her vacation to St. John Island.

 

Bridget Gardiner
Bridget Gardiner resides in Savannah, Georgia, having moved from the mountains of Santa Cruz, with her two boys and two fur babies. Her wanderlust for new places and adventure is what truly keeps her going. She is the founder of the Facebook support community and blog “My Mountain, My Lupus” where she uses stories of her everyday adventures to bring greater support, awareness and education to all lupus warriors throughout the world.

Single mother, activist, adventurist, mentor, lifetime lover of learning, lupus warrior.

Bridget Gardiner

Bridget Gardiner

Bridget Gardiner resides in Savannah, Georgia, having moved from the mountains of Santa Cruz, with her two boys and two fur babies. Her wanderlust for new places and adventure is what truly keeps her going. She is the founder of the Facebook support community and blog “My Mountain, My Lupus” where she uses stories of her everyday adventures to bring greater support, awareness and education to all lupus warriors throughout the world. Single mother, activist, adventurist, mentor, lifetime lover of learning, lupus warrior.

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