When I was growing up, my family went camping every weekend from April to October and most of the summer. We had a trailer on a seasonal site in southern New Hampshire. There were tons of kids around my age and our parents were all friends so they often planned group outings for all of us. We went to a few different places but my favorite was Salisbury Beach.
Salisbury Beach in the 90s was the quintessential New England seaside town. There were several arcades across the street from the beach with lots of games to play. There were places to get fried dough. Salisbury Beach also boasted a relic pulled out of times long past: an oceanside amusement park with a wooden roller coaster called Pirate’s Park. Together with an annual trip to the newer Canobie Lake Park, it instilled in me an appreciation for roller coasters. You can’t worry about work or responsibilities when you are screaming and barreling down a steep incline. There are a handful of seconds when you are totally and completely free.
For this reason, I have always found amusement parks to be worthwhile distractions. In the spring of 2016, after a particularly stressful few weeks, I spontaneously booked a trip to Disney World for just me. I wanted to go swimming during the day and go to parks at night and just be by myself and not have to say the words “mast cell” for a week. I hid behind a huge black floppy hat and sunglasses for a few days. And of course, I stopped at all my favorite roller coasters.
Nicole and I have made plans to go to Universal Studios several times. Every time, I have been too sick to go. We planned to go this past Tuesday but I ended up in the hospital with CDiff. We resigned ourselves to the fact that this adventure would have to wait yet again but then the storm hit and my flight was cancelled. I couldn’t get a flight back until tomorrow. So when I seemed to be okay yesterday, we decided that we were going to Universal today. The Mast Cell Amusement Park Team was back in business.
It was cooler today than normal for Florida at this time of year, in the low 60s with a nice breeze. It felt like Boston in the fall and the weather could not have been more perfect for us. We got Express passes to get us to the front of all the lines and we went on every single roller coaster they had. I needed to take huge doses of prednisone today anyway to prepare for my flight tomorrow and I banked on that prednisone managing my symptoms enough to go on rides. I banked right. It was such a great day.
I can hold my disease back with medical intervention enough to do something like this but it is very temporary and never lasts more than four or five hours. As anticipated, I crashed around nightfall. I was already pretty sore when the day started and I am now in significant pain. Tomorrow will be rough. It will take days beyond that to get back to baseline. I don’t care. I made this choice understanding that this is part of the bargain. CDiff and the Bomb Cyclone blew epic craters in my plans. But we were able to pull this off, and that is worth celebrating.
Not every choice you make about your disease will be the right one. I struggle with this. With every wrong choice comes a rising sense of culpability. As if you are somehow complicit in your own disease, that you have caused this and deserve to suffer. As if your decision to eat a cheeseburger or go to an amusement park could possibly be responsible for all of the things inflicted upon you by mast cell disease. You are not that powerful. You do not have that much control. Mast cell disease is not something that you made happen. It is something that happened to you.
There are days when I am sure I have nothing left, that I’m hollow from the absence of all the things I have lost. But there are other days. On some of those days, I have roller coasters.