Instead, I was consumed by fear of the unknown. I received no explanation for the many doctors’ visits, nothing to combat my wild imagination that created stories each night to prevent me falling asleep
Twenty years after my diagnosis, I’m still discovering new details about the mystery that’s called Marfan Syndrome.
In a world without Internet, my parents had neither information nor advice on how to tell a six-year-old that her life would be very different from the perfect one they had planned. Unable to face their child’s pain, my parents chose denial.
No wonder: during the many consultations — about my eyesight, my height, my heart — my parents were fed the misinformation that I would die from my condition. In their desire to make my stunted life as carefree as possible, they decided to leave me in what they hoped was peaceful ignorance.
But instead, I was consumed by fear of the unknown. I received no explanation for the many doctors’ visits, nothing to combat my wild imagination that created stories each night to prevent me falling asleep — in case I wouldn’t wake up again. One story had me almost believe that I was adopted; in another, I had a hole in my heart; another dream had me kidnapped and miraculously healed by my kidnappers.
Like the big C or other euphemisms for cancer, my parents couldn’t bring themselves to say the M word. Instead, when I reached age sixteen, and they were ready to hand over some of my medical decisions to me, they gave me a pile of Marfan magazines. In the glossy pages of the Marfan Foundation’s monthly magazine, I read about other people just like me — living regular lives, with an understanding of their weaknesses. Although it took years for me to fill in the blanks, it was a start.
Marfan’s, I learned, is a genetic condition, passed down from a parent, or, as in my case, created through a spontaneous mutation during pregnancy. Around one in 5,000 people have the Marfan gene, which affects fibrillin — a protein and building block in the connective tissue. Since the whole body is held together by connective tissue, this mutation can lead to many different symptoms, including problems with the heart (aortic enlargement/dissection), eyes (myopia, lens dislocation), bones, joints, and more. Although heart issues can be fatal, with early medical intervention, I and others like me can live a regular life. Intelligence is not affected by Marfan syndrome. As a child, I was acutely aware that my life was in some kind of danger, and I also possessed a vague sense of not belonging.
I wasn’t excluded or bullied in school, but I was encouraged not to attend too often. I wasn’t there enough to be a part of anything, and to a young me, it felt like I was a wispy ghost, unseen by the world around me. I spent every recess in the same spot, perched on a low wall at the side of the playground, watching my classmates play ball. I read a book and munched pretzels — two forbidden items during outdoor recess — but the teachers never seemed to see me, no matter what I had in my hands. I watched girls cheer each other on and prayed that their ball would roll near me so that I could throw it back to them and have some part in the game.
Miracles do happen. Halfway through one recess, the ball actually landed just by my feet. I waited, desperate to hear my name said out loud, to be noticed, acknowledged as a person, and asked to throw the ball back. But that remained a dream. One of my classmates jogged over, picked up the ball, and ran back to join the game. She could have walked through me without seeing me there — she belonged to the world of ordinary humans, while I seemed to live on a planet of my own.
I sat in my lonely spot, fighting back tears, trying to distract myself with dreams. I shrank into my coat, wondering where I belonged, and if there was any place that I could fit in, if I could be noticed and accepted the way I was.
“You have a 100-degree curve — and 60 is considered critical. Miraculously, your internal organs are still intact, but we need to do surgery before it’s too late…”
