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No Half-Life

Monday, April 15, 2013

By Alissa Butterfass

Recently I read a memoir by a man who was a year ahead of me in high school. At age 19, he was paralyzed when a truck slammed into the bus he was riding. The author decided to write the book as what he termed his “half-life date” approached—the day when he would have lived exactly half of his life pre-accident and half post-accident. Throughout the book, he reflects on what his life was like before the accident, and describes how life has changed for him since then. As I read Half-Life: Reflections from Jerusalem on a Broken Neck by Joshua Prager, a few ideas struck me in particular.

  1. There is no half-life for me. I was born with my heart defect. I cannot compare life with a heart condition to days when I was completely heart-healthy. I do not recall a time without scars crisscrossing my body. Or when I could easily run without getting short of breath. For me, there is no half-life, there is just life.
  2. Is there an upside to CHD? The author discusses how he tried to keep a positive attitude towards life and remain optimistic about his recovery, even when he was, for a short time, quadriplegic. He quotes psychologist Daniel Gilbert, “As soon as our potential experience becomes our actual experience—as soon as we have a stake in its goodness—our brains get busy looking for ways to think about the experience that will allow us to appreciate it.” I try to think what in my life, especially the good stuff, is a direct result of my having been born with TGV. The kindness and generosity of friends who visited me in the hospital. The gift of life brought through surrogacy. An entry into the supportive world of ACHA. A killer college admissions personal essay. Through the prism of positivity, life with CHD can be accepted and appreciated.
  3. “Even more dangerous to live is to not live.” I loved this line. This is the sentiment that guides me to the ski slopes each winter. The one that led me to a trek in Chiang Mai, white water rafting in Australia, the beaches and temples of Bali and a semester in Israel. My parents were once told that I’d never ride a bicycle. But they had a choice—listen to the naysayers or let me try to live life to my fullest, letting me trust my own heart (metaphorically and literally) to know my limitations. This isn’t to say I should live dangerously or worry-free. It means to live my life my way.

I am like everyone else. I have my moods. I get grumpy. I grow frustrated with aspects of CHD. But just like there is no half-life for me, there is no reason for me to live just half a life.

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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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