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.
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