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How ‘Welcome to Holland’ Helped Me Travel With a Chronic Illness

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It had been a very long school year, and I was ready to get away. During that time, I was hospitalized twice during the fall semester and missed two other weeks for out-of-state travel for specialist appointments. In the spring, I went to the hospital less than two weeks into the semester, and it didn’t end there. Numerous emergency room trips, and eventually surgery, filled my calendar when it should’ve been filled with meetings with students, research projects and scheduling my dissertation proposal.

But the semester finally did end. My husband and I had been planning a cruise to Alaska for almost a year to celebrate my brother’s graduation from college. We were looking forward to a week away and taking a break from life. Then, a couple weeks before we left, my mom posed a question to me. I don’t remember the exact wording, but it was something along the lines of this:

“Are you ready to go on the cruise with mast cell activation syndrome (MCAS)?”

At first I was confused and wasn’t sure what she meant. Of course, I was ready. I had doctor’s notes stating I needed to carry medically necessary liquids through airport security and onto the ship. I had made list after list of supplies to make sure I didn’t forget anything essential. I had what we hoped would be more than enough epi-pens and emergency medications to manage any reactions. We had contacted the ship ahead of time to make sure they were capable of handling my extremely limited diet. Plus, we checked to make sure there was an extension cord in our cabin to charge my feeding pump. All the normal necessities like clothes, toiletries and, of course, cameras were ready to be packed. Why wouldn’t I be ready?

But when we got to the airport, what my mom asked me finally made sense. After an anaphylactic reaction on a plane two years earlier, my doctor decided I should pre-medicate prior to flying to hopefully prevent any reactions before they start. All my medications are liquids so I can put them down my feeding tube, which is no big deal at home. However, in the airport bathroom, it was much more complicated.

I stood in the bathroom and tried to balance my syringes and a cup of water on the edge of the sink. At the same time, I was trying to keep the end of my feeding tube from touching anything and getting contaminated with who knows what kind of bacteria and germs. It was so frustrating. I was on vacation. Things were supposed to be relaxing and fun, and I wanted to feel like I had gotten away from the craziness in our lives. I wasn’t supposed to dealing with my feeding tube medications in an airport bathroom while people stared at me as they washed their hands.

And that’s when I realized what my mom meant. She wasn’t asking if I was physically packed and ready to go, she was asking if I was ready to take my chronic illness with me on the trip. It wasn’t that I actually believed I would all of a sudden be healthy just because I was going on vacation, but there was a part of me that was perhaps subconsciously expecting things to be easier since I was on vacation. That moment in the airport bathroom made me realize that we may get breaks from our every day schedules and routines, but for those of us dealing with a chronic illness (or any special need), there’s no vacation from being sick.

It’s just like Emily Perl Kingsley’s essay, “Welcome to Holland,” where you plan a trip to Italy and end up in Holland instead. You step off the plane and feel out of sorts and upset that your trip isn’t what you had planned. But if you take a minute to look around, you realize that while Holland might not have the canals of Venice, the Sistine Chapel or the Leaning Tower of Pisa, it has a beauty of its own in the canals in Amsterdam, the countryside windmills and the colorful tulips. Holland might not be as flashy as Italy, but there’s still beauty in slowing down and taking in the sights.

And that’s what I learned on this cruise to Alaska. When I was young, our family vacations were always fast-paced and busy. This trip was different. I needed more down time to recover after one activity before moving on to the next. After a day of kayaking, I needed the evening to relax instead of going out again after dinner. After hiking a technical trail in the sun, I spent the next day just sitting out on the balcony, looking at the mountains and glaciers in Glacier Bay. Instead of staying up late each night to see the shows, I made sure to get a full night’s sleep so I could enjoy activities the next day.

Kylene Boka

Would this trip have been different if I weren’t sick? Yes. Was this trip fantastic in its own right, and did I have a great time? Absolutely! I would even say that being slowed down by my chronic illness gave my husband and me the chance to just enjoy being on vacation and not feel like we were rushing around to get to one activity after another. It might not have been the Italy that I was used to and was expecting, but I found Holland to be just as incredible with a beauty all on its own.

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Originally published: June 10, 2015
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