Claire Wineland My Life Expectancy
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[Claire Wineland My Life Expectancy]
[Claire Wineland:] Source: LYBIO.net
So I’m dying faster than everyone else… [laughs]
So I have cystic fibrosis, if you guys didn’t already know that, which is a chronic illness, meaning I’ve had it my entire life and was born with it, that causes an overload of mucus in all of my organs and they pretty much all just shutdown over time.
Cystic fibrosis is terminal, meaning it ends in death. And it is also progressive, meaning that as you get older, it gets worse.
Someone explained it me a while ago, imagine climbing a mountain and there is a giant like snowball hurling your way, you have to get up the mountain fast before it hits you, right. So you’re climbing of this mountain, but every single, you know, let’s say few miles, you get a giant weight put on your foot. And so as you’re getting higher, it’s also getting harder and harder to climb, but you have to climb even faster because you have to get to the top before that giant snowball comes wacks you off the cliff. That’s pretty much what having CF is like.
Because every year it gets harder and harder for you to fight pretty much because every year you’re getting sicker, the problem was cystic fibrosis and with our whole life expectancy thing is it’s not like any other illness where there’s a treatment you take that either cures it or doesn’t cure it. It’s not death or no death. It is how much you work on your own health, directly determines how long you’re going to survive.
So, if you’re someone who procrastinates in doing treatments and taking care of yourself or doesn’t do it as well as you should, you’re going to die, you’re going to size sooner than everyone else.
And the doctors are probably going to guilt you and make you feel terrible for letting yourself die faster than everyone else. So it kind of sucks in that sense, especially once you get to be a teenager, because I have literally been doing hours of breathing treatments my entire life. And those, the amount of time I’ve been doing treatments has been getting more and more and more and more and more as I go. And I’ve been getting sicker all at the same time and it’s harder than it’s ever been in my entire life.
And when you get to that point and I know, I have my own ways of dealing with it and I’ve met tons of other CFers, who are at the exact same point as me and what do you do. I mean when you really have so much work, so much energy needs to be put into staying alive, but yet you know you’re not really going to. I mean you know really you’re just buying yourself more and more time, but it’s exhausting. So when you know how do – how do you deal with that. And that’s something I wish I hadn’t answered for everyone, but I’m still trying to deal with that.
Someone asked me like you know like what I – what I was going to do after school and all this, and I was getting really into like these stuff that I was doing with my life and things I was really excited about.
And then my friend Rivera goes wait – are you supposed to die in a few months. It’s like, oh right. Thanks, that’s actually another good thing to talk about is because I’ve always had a short life expectancy and it’s always been changing. I kind of zone out to it sometimes. I don’t even like I really would just forget I’ll like live like everyone else does and then I’ll – and you know just be going about my day.
And then something will come up and I will be like, all right I am dying. [laughs] I’m like, oh, I was weird. Okay and then go like back to my real life, it’s weird. I am kind of like, numb to it now, and that doesn’t seem very healthy.
[Claire Wineland:] Source: LYBIO.net
When I was born I had a life expectancy of five years old and then it moved to 10 years old and then it moved to 13 years old and then it moved to 18 years old, and now it’s currently at 19 years old. And every single time that I – that I get close to that point where I’m supposed to die, there’s a new – you know new technology that comes out, new medicine, new ways of treating cystic fibrosis, and then presto I live for another five years.
But really at the end of the day, I can’t believe what the doctors say, but I also can’t believe that it’s all going to be okay. I can’t believe that I’m going to live forever. I don’t necessarily believe that I’m never going to die or the CF is never going to take its toll on me.
I could die in a year or they could come out with a cure and I could live for another 50 years, which kind of actually scares me more than the thought of death weirdly enough because I’ve lived my whole life in this bubble of like you’re going to die soon. You will die before you become an adult. And now like, you know, I could actually become adult and that’s terrifying as well.
So really if I think too far in any direction, I get panicked.
[Claire Wineland:] Source: L Y B I O . N E T
So let’s just live in the moment. Sorry this was so depressing. Here’s a little joke to make a better.
What is the biggest downside of sudden unexpected death; being unable to delete your search history? Thank you. Bam, have a good day.
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Claire Wineland My Life Expectancy. So let’s just live in the moment. Complete Full Transcript, Dialogue, Remarks, Saying, Quotes, Words And Text.