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.
