I have this theory about CF and survivors guilt.
I know I have it; but I’m not sure about other CF people.
I’ll explain it for those who are confused.
Survivor’s guilt is known for people who’ve been through dramatic experiences that others have died but by chance (actually God) they have lived.
I think people with CF have survivor’s guilt of some sort. I know CF is a difficult disease to explain because it affects people in different ways. I believe there’s like what, 1000 mutations of the disease? Obviously some will have worse symptoms then others. And therefore die earlier.
I knew a CF girl who was 2 years younger then me; she died at the beginning of this year. A couple months before that a guy my age died from CF, he lived about ½ hour away from my place. That’s when I felt guilty for being alive, I asked God “why wasn’t that me?” it so easily could have been.
I know there is stuff out there that helps CF but people just don’t know about it or are so ignorant that they refuse to give it a chance.
My parents always told me that God let me have CF for a reason. I know that reason now – to share with others who have CF that there is hope. But how do I effectively get that message across? I’m not doing so well because of luck or because I have one of the lesser kinds of CF. I’m this well because I’m doing something about my health! You can have as good as quality of life as me if you WANT it!
PARENTS take responsibility for pity sake! The doctors are not responsible for your child’s health, YOU ARE! Your doctor’s are there for guidance, but they are NOT all knowing. They DON’T have all the answers. YOU have to find them. First place I’d go look is for others who’ve had success with their CF. such as I. I’m not the only one.
Do this for your kid, or yourself.
www.freewebs.com/cflife - my life with CF. What I’ve done to be proactive about my health.
I liked this quote so much I also put it on my regular blog – Life is a Vapor
The first step to getting the things you want out of life is this: Decide what you want.