The norm in my high school was to graduate at 16 and head to a British seminary, but that meant my parents allowing me to go away from home. The norm in the Marfan’s community was to be on a heart medication to prevent an aortic aneurism, but that meant doing the almost unthinkable: putting trust in doctors. I was 15 and my parents and I had some big decisions to make.

My parents and I never did have an official talk, but at night, George the teddy bear snuck out of retirement to talk things through with me. In the security of my dark bedroom, I pondered the bits of information I did know about Marfan’s. I thought about the secret that was my life, the secret I just knew I wasn’t allowed to share, the secret that somehow made me an outsider. I tried to figure out what I wanted from a life I might actually, possibly, get to live.

I considered the idea of trying to follow the expected path, of trying to follow my friends to seminary — fitting in with the norm sounded good in my head, but it didn’t really seem possible. If I dared think even further ahead, the other M word came up. Marriage. I felt like there would never be a person who could accept the whole me, so marriage seemed unlikely. I thought about maybe focusing on a career path that could occupy me. I couldn’t think of what I wanted to do, but I liked books, so figured I could start with specializing in English. 

As my classmates confidently mapped out the rest of their lives, I kept quiet. I watched silently as one by one my small group of friends got their acceptance letters to seminary and others chose sixth form: two years of pre-college courses. I closed my eyes, prayed I knew what I was doing, and chose losartan. My parents picked sixth form. We would protect my heart with medication and they would protect me by keeping me near home. 

The new medication was awesome and awful. At first, it made me dizzy, and I felt myself spinning in a haze as the teachers began preparing us for our final exams. Slowly, eventually, the fog began to lift and with the extra muscle strength, I tried to make the most of my last weeks of being a child. Pizza parties with friends I had finally made. I had tasted life as an outsider, and as I matured, I was able to notice others on the periphery. I pulled them closer, creating my own circle of friends, giving me a taste of taking control of my life circumstances.