I

stared at the pages in my hands, froze for a moment, and then turned and ran to my room, holding tight to that precious bundle. It was a day like any other, but in that one innocent moment, everything changed.

“Shira, come here.” I’d followed my mother’s voice to the study, where she stood holding a yellow folder. “Here, read these. I’ve been reading them for you these past few years.” I’d peeked inside and then made a beeline for my bedroom, locking the door behind me.

I took out the first magazine. What was this exactly? I was confused as I looked at the front cover, with a cute picture of a giraffe and the name: Marfan Magazine. I opened it.

Page one. Staring up at me were pictures of people who looked disturbingly similar to me.

Page two. Marfan syndrome is a genetic disorder that affects one in five thousand people and causes symptoms that include scoliosis, eye issues, heart defects…

Wait. Wait.

It was describing me. It talked about My experiences, about all the parts of My body that the doctors had poked. It was All About Me. And I wasn’t alone. I was confused, then relieved, and finally angry. Why had I lived for so long in fear of the unknown? And why did I have to feel so alone, when there were others out there just like me?

Page three. A picture of a heart. The aorta is the pipe that carries blood from the heart to the rest of the body. Every heartbeat puts huge pressure on this pipe, which is usually very strong. In people with the Marfan’s gene, the weakened connective tissue leads to a weaker pipe, which is then in danger of tearing open.

So this was why they were so concerned about my heart; this was why the doctors warned that I could die.

Page four. In memory. A list of people who had died of an aortic dissection that year. Goodbye illogical fear of dying, hello fear of my heart exploding.

Page five. Oh, this was why I was continuously bumping into things. The internal lens in the eye is held in place by two delicate threads which adjust the lens for near and far vision.

Again that connective tissue thing came up again, again the things that were supposed to be strong were weak, this time leading to a lens that slowly slipped further and further out of place. I was blanketed in sadness. Did this mean I would eventually go blind?

No! I needed to see the world. NO! Why was there no hope in these unrelenting pages?