If you were to ask me if I am spontaneous, my answer would be no. I tend to like my adventures to be planned out, preferably several days ahead of time. I like to know where I am going, how long I will be there, what is available to eat in the nearby vicinity and where I am in relation to a restroom at all times. If I’m really lucky I can spend several hours with my mom on the phone the night before discussing everything I may need to bring with me. Sometimes she makes me a list. I love her.

There’s a certain kind of anxiety that rises up in me whenever someone mentions an idea that I do not feel I have had enough time to mentally or physically prepare for. Especially when it comes to that rough-and-tumble outdoorsy stuff. You know, the kind of stuff that you wish you enjoyed more and your cool hippie friends always invite you to: hiking up large hills, going to standing-room only concerts, anything having to do with a boat. If invited to one of these aforementioned events I smile politely and respond with some sort of noncommittal “Oh! Sounds fun!” but secretly I will be panicking. What if I get too tired going up all the stairs? What if I get seasick, what if we’re all in the car and I have to ask to pull over at a gas station- what if I have to poop in a gas station? What will I eat? Should I pack a lunch and hide it in my backpack in case we stop for food on the way home? What if I get really sick and I have to sit down and the band stops playing and my friends are waiting on me and I forgot my medicine at home because my mom never made me a list- but oh yeah, hey! Sounds fun.

Recently I went to a series of short performances with my boyfriend (the venue only had one small toilet, noted) and one of the shorts was focused around the Grand Canyon. The character mentioned that “if you’re hearty enough you can ride a mule down to the center of the canyon,” and I thought, gosh, I would never do that. And then I felt a short pang. I would never ride a mule into a canyon. I would never even consider it. Of course not. The pang persisted. That’s when I realized that I didn’t recognize myself.

For you to understand what I’m trying to get at, I’ll have to explain just a little bit about myself when I was very young. I got sick when I was ten. At least, that’s when I remember my body getting in the way of my normal life. I couldn’t last one day in school. I practically lived at the doctor’s office. I remember my mother’s hushed tones on the phone, talking with the principal about whether or not we should hire a private tutor and allow me to be homeschooled. Both my parents worked. My older brother was in school. Most mornings I would walk down the street to my fourth grade teacher’s house where a folder full of busy work would be waiting outside the door. I’d take it home with me, complete the math problems and read the packets, and walk it back in the evenings. That was how I passed fourth grade. I watched a ton of TV. Talked to my toys. It was lonely. It was a lot for a kid.

But I do have memories from before my gastrointestinal disorder took over my life. I remember always wanting to be outside. I loved camping and fishing. I begged my parents for horseback riding lessons. I was constantly in the water. On career day I proudly asked my second grade teacher how to spell “marine biologist.” Tennis shoes and knobby knees and a knotted brown ponytail- I remember that girl. Suddenly it was clear to me. I lived with an undiagnosed disease for ten years. I thought all kids worried about the same things as I did, and as time wore on it became my new reality. I lived my normal life with an added secret layer of not eating this or that, of missing school one too many days, of keeping close to home for fear of an attack. Now that girl is grown up and she won’t go near a boat. She gets winded on a hike. She thinks twice before riding a mule into a canyon.

Maybe it’s silly, but sitting in that performance about the Grand Canyon I finally came to understand that over the years I managed to forget just how much my illness has shaped me. And not in all bad ways, either. I watched a lot of movies and realized I wanted to act. I wrote a lot in my journal and found out I love to write. On the bad, bed-confinied days stories kept me excited- ones I would read in books or watch on television or make up in my own head. I found a world just as intoxicating as the one of my early childhood and without any of the risk. It’s a beautiful thing, and I’m grateful for it. Mine is a beautiful life, and I’m grateful for it.

But still, I can’t help but wonder how much of myself is authentically Shannon and not molded in place by my illness. If there were no disease, no fear of sickness overcoming me at any moment of the day, no fear of lethargy sweeping over me- just my little girl self getting to live out my life the way I thought it was meant to be: running, camping, fishing, jumping into things without overthinking them, without needing to pack a lunch and three different bottles of pills- what would I be like? How was I going to turn out, and why did I have to change?

My life is a good life. A happy one. And I like who I am. But if I took that one little thing away- if I had always been healthy instead… would I be different?

If you were to ask me if I am spontaneous, my answer would still be no. Not right now. But I was, once. I forgot it for a while, but I remember now. I’m lots of other things, though. I’m articulate, and optimistic, and compassionate. Some people tell me I’m funny. But spontaneous? Not anymore. I think I will be again, though. Maybe someday.