One of my favorite stories is Frankenstein. I have probably read it hundreds of times. I first read it in high school and really didn’t like it. I revisited it in college when taking a Horror Story class and had a completely different experience. I suppose I grew into it.
One of the most interesting aspects of Frankenstein is that it is a story within a story within a story. It is Victor Frankenstein telling a story to an explorer, who then tells the story to his sister via letters. It contains the horror, reminds you that this is not happening in real time, but is instead being recounted later. It makes it less frightening to know that he survived.
I think of my own life in this same way. It is less frightening because I know I have survived this long. It is less frightening if I can build frames around the hard times.
In 2012, I flew 2200 miles to Seattle and found out while I was there that my colon was no longer functioning. Then I had these two years of endless struggle to stay one step ahead of my disease. I had surgery and anaphylaxis and so much medication. The stakes got higher and higher. If it was bad, it was very bad, and if it wasn’t bad, it was amazing.
Last week, I went back to Seattle. It involved a lot of complicated logistics and hefty doses of antihistamines and steroids. I was exhausted and sore and I threw up in an ice cream shop. And it was amazing. It was amazing. We had pie and beautiful weather and lounge dancing and pretty dresses and conversation with this wonderfully eccentric woman who I hope to be like when I am older. I got to live an alternate reality in which I was roommates with two of my dearest friends in Portland, Oregon. I drank alcohol and played several games of pinball and inhabited this Seattle counterculture for a few days. I stayed up very late and needed a nap every day. I had some issues with my PICC line and had some help changing my dressing and administering my IV meds from my best friend. It was, basically, an accurate representation of my life, if my life were more opulent.
The stakes for this trip were very, very high. The risk for damage, physical and psychological, when you are sick, is very real. Every loss, every limitation is magnified. If this trip didn’t go well, I was probably not going to do any serious travelling in the future.
On my first morning in Seattle, I got a text from a friend saying, “I’m so glad you’re travelling again!” And I thought, “That’s right, I’m somebody who travels.” It was like a knot unravelled inside of me and returned this part of me to my soul.
I appreciate symmetry, in literature and in life. I like framing things so that they have a beginning and an end. Two years ago I went to Seattle and started myself down this road, and tonight I came back from Seattle, and it’s over. My disease isn’t over and my life isn’t over, but that period is over. This whole trip was powerful. It made me feel powerful. As my plane touched down tonight, I felt transcendent. It feels like I transcended, and now I can move on.
In its simplest form, when you look past all of these frames, my story is about a girl, who loves some people and is trying to have a good life. I am not sick or brave or special. I am just ordinary. I realized on this trip that the reason these last few years have been so difficult is because it was hard to find my real story outside of my disease. It is hard to remember who I am when nobody else can remember either.
I am not my disease. I am just me.
Thank you, Seattle.