I have always been one to push the boundaries of what someone with cystic fibrosis is capable of doing. So, it wasn't a surprise when I came to clinic and started the conversation with, “I am moving to St. Thomas in the Caribbean.” Since that bold move, the messages I have received have ranged from “Wow, I love what you are doing” to “Have you fully lost your marbles, Chelsea?!” I never claimed to have all my marbles to begin with, but I'm here to share how growing up and dealing with CF actually prepared me to live on an island.
A little back-story: I grew up on St. Thomas in the U.S. Virgin Islands. For the better part of my childhood, I assumed everyone ran on the beach after school collecting seashells. My point being, as crazy as this move was, it wasn't the craziest thing for me to return “home.” So, the idea of living as a CFer on an island wasn't completely foreign to me.
I'm sure the question that first pops into your mind when I say I live in the Virgin Islands and have CF may be “How?!” There is no CF clinic on a 31-square-mile island, but I am extremely thankful to have an amazing clinic team at Johns Hopkins who sees the benefit in not only staying healthy, but also living my life to the fullest. I spent many clinic visits and phone calls having hard conversations with my CF care team, discussing how to make this work and “what if” scenarios before I moved so that I would thrive on island.
I receive my medications via mail through my specialty pharmacy, as well as from my hospital's pharmacy. I do my treatments the same way I have for years with all of my equipment with me. I am thankful to have family that lives only an hour from Hopkins, so -- every three months -- I fly to see my dad, friends, and my CF family at the clinic. And, if I can feel an exacerbation is coming, I return earlier to get checked out. I essentially have my entire CF team on speed dial in case anything begins to feel off. And, if something does happen where I need to get off the island ASAP, we have emergency transportation at the ready. So, the short answer to “how do I live on an island and have CF?” is plan, plan, plan, and then plan some more!! Thankfully, the salt air has done me well and I have not had to go back to clinic, aside from planned visits, thus far.
Island life to most mainlanders seems like a 24/7 vacation, and it is a lot of the time. Looking at the beautiful beaches, crystal clear water, views for days that never get old, and fun in the sun may have you planning your own escape, too. Beyond the beauty, this amazing island is also a running tally of Murphy's law examples. There are power outages every other day, cistern water leaks, roads with potholes to China, stores so out-of-date we still have a Kmart, being so isolated an Amazon delivery date is simply “eventually,” hurricanes, and work that never seems to end. I'm not complaining, simply shedding the light onto the part that most vacationers never deal with. It is certainly not for the faint of heart. And that's exactly why I fit in.
Living with CF has instilled a never-give-up mentality in me that has allowed for a rather seamless transition back to island living. CF can be the most unpredictable monster out there, so it's only natural to learn how to roll with the punches. CF forces you to not only think about Plans A and B, but Plan A through Plan X all at once. Having multiple plans comes in handy when you have to figure out how to get medications to an island in the Caribbean and then how to do those meds if the power goes out that day. With CF and island life alike, you have to take things day by day. How am I feeling today? Is there a storm coming today? With both questions, you must adapt a level of patience beyond normal. “Let me call the pharmacy, again, to see if my medication is ready. Oh, the ferry is running on island time this morning? No problem!"
In a strange way, this island feels like the exact place I should be. I am forced to constantly stay active by working around the house, teaching yoga, swimming, or snorkeling. I live in -- quite literally -- a hypertonic saline bubble, which my lungs love. I am using the skills that I developed by living with a life-threatening disease to live peacefully in a place I love. More than anything, CF has shown me that just because something is hard, it isn't necessarily unachievable. Living every single day with CF is hard: every treatment, every reminder of what the future could hold, every cough that makes you think, “Is this an exacerbation cough or a regular cough?” Living with CF makes living on the Island -- with all of its quirks, adjustments, and foibles -- seem like a walk in the park.
CF, as many of us know, instills a distinctive understanding of life from a young age: Our time on earth is limited. Though this is true for everyone, CF slaps you in the face with this reality long before the rest of the world. For me, this slap in the face caused me to reevaluate everything, who I am, what I want, and what brings me happiness. It was this reevaluation and deep understanding that I am not promised tomorrow that drove me back to the island.
I knew I wanted to make the most of my life. I want to follow my dreams and use the courage that CF has given me to take the road less traveled and live an unbelievably beautiful (still slightly crazy) life. My dad has always made the joke that I am a “fun sponge” because I have to suck up all the fun from every experience I have. I guess you can also call me a “life sponge,” trying to suck every experience and moment out of this life I was given. So, from this sponge to you, follow those dreams. Nothing is ever too crazy!