I was born with cystic fibrosis and wasn’t expected to make it to adulthood. Yet here I’m 45 years old and you’d think I’m 100% grateful for these three extra decades plus.
Well, I’m grateful but 100% is impossible because of one thing. Survivor’s guilt.
The other day I learned that Noah McFall of Candler, North Carolina passed away. I learn about people passing with cystic fibrosis all the time and sadly unless I was very close with them it doesn’t affect my day but only for a few moments.
When I learned of Noah’s death (I refuse to say passing because that sounds too gentle), I was really hurt. Why? For starters, he was ten years old. Ten!!! The age most of us have just learned to ride a bike. The age many of us have yet to attend middle school. The age of
Granted, we have breakthroughs and more coming but none of them would have saved Noah’s life. Only a cure would. (Noah was on the waiting list for new lungs and a new liver and that may have saved his life too but for how long? We don’t know.)
I’ve written about my guilt regarding my sister Wendy who only lived 16 days because of this disease. The only blessing for her was she likely didn’t remember a thing. Noah did. He suffered and it breaks my heart for him and his family. I know my blogs are generally positive but in this case I want to be real. I’m pissed.
Noah’s passing and my survival guilt are not going to slow me down. They will only push me to work harder and want to live more. I only hope there’s a cure in the next few years. Not for me so much. But for kids who want to live their dreams with cystic fibrosis. Someone like Noah.
Live your dreams and love your life.
Andy
His death is so shocking. As an “older” person we CF, we think our experiences are more common but the reality is that this is still predominantly a childhood disease.
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