So there's this video going around starring this girl, Claire Wineland, who "uses her positive attitude and social media to normalize death." Watch it really quickly, then come back and read the rest.
Done? Cool. Okay, so Claire has some pretty good points, and her Youtube videos aren't that bad, actually. I enjoy them a lot. Claire, in this video, covers the very uncomfortable yet very real topic of death. I like that. People pussyfoot around death so much and they try to make themselves, or me, forget that CF comes with that very real possibility. However, the problem I have with Claire's video, and the reason I won't share it (besides on here, but I don't know if that actually counts) is because she makes it seem like death is the only thing on her mind, and the only thing CF means. To her (I'm interpreting, of course), having CF is being given a death sentence and forces you to live almost hopelessly. Even without CF, she sees everyone's death sentence. To her, just because she has CF doesn't mean she's the only one who is going to die.
To me, Claire is giving up.
Claire is accepting the fact that CF will kill her. That's a crappy way to live.
As cheesy as it sounds, I have CF, but CF doesn't have me. Thinking that CF will be the ultimate killer and going through life accepting that CF "ends in death" is surrendering to cystic fibrosis, allowing it to take over and define and control you.
To me, that'd be too easy.
It's like David and Goliath. The 1980 US Men's Olympic hockey team. The tortoise and the hare (but not the rematch. Yikes the tortoise gets his butt kicked). Everyone loves a good underdog story. I don't want CF to kill me, not because I don't want to die young, but because it's just too easy. It's too obvious and too predictable. I don't care if I live to be 85 with grand kids and great grand kids or 20 and not even halfway done with college. I'd rather die in a car crash tomorrow than die at 80 from CF. I do not want my cause of death to be what the doctors expect. What my family and friends expect. What my body expects. I was born in 1997 and was given a curse. It was a death sentence, sure, Claire, but I'm doing my time and plan on getting out early on account of good behavior and I'll be on probation. That's a weird, probably faulty analogy but you get the idea. Just because I have a life-threatening, terminal illness doesn't mean that CF "ends in death." What a pessimistic way of looking at life. Dangit, scientists and doctors are getting so freaking close to finding a cure, I am so confident that although I may not be cured of CF by the time I die, I will be so healthy despite my CF that it will be practically scientifically impossible for CF to kill me.
I'd rather die in like a car crash or obesity. (lol can you imagine?)
This whole death thing really hits home. As I've mentioned in previous blogs, I have a tough family history in terms of dying from terminal diseases. The suckiest thing is, my friends, my girlfriend, and, worst of all, my nieces and nephews know that and think about it way too much. My nieces and nephews say things all the time about how Anna had CF and died and that I also have CF and my lungs aren't healthy. Imagine hearing essentially a death sentence from a three year old, even though to them they're just stating facts and don't think anything of it.
The potential of death from cystic fibrosis also ruins the mood on multiple occasions with my friends. Noelle, the biggest supporter in my life, still struggles with the thought of losing me too early. Sometimes I will just casually bring up the idea (don't ask me how, because I honestly don't know. It just happens.) and I have to comfort her because it brings tears to her eyes. I try to make it better by trying to convince her that she or I could die any day we get in the car or something, though I don't think that is very effective. I think that's what Claire is trying to do in the video, but more pessimistically.
My new friends at Morris are still learning about my CF and all it entails. Again, in previous blogs the topic of conversation has been the difficulty in finding people who will accept me and my CF. When my friend, Parker (who wanted to be mentioned by name here) made a light joke (something I do a lot and honestly welcome) about CF, the room just kind of went silent and everyone said they just felt sad then and they all felt bad. We were having a great time and then my CF and potential death came up and it ruined the mood. This is why I make jokes sometimes about my CF. I need to be able to laugh at myself and lighten up the seriousness people surround CF and death with, or I will live my whole life completely depressed. Trust me, it's happened. I've found things that work well for me, and that includes joking and just being open about it. I love talking about my CF and answering questions about it because I don't want people to feel uncomfortable around me or anything. So, Parker, or anyone reading this for that matter, please ask me questions. I will not bring it up on my own because I don't like pity parties, but I love informing people.
I appreciate Claire's attempt at normalizing death. I think it's very important for people to understand that yes, we will all die, and no, we don't know how or when. That includes me and all people with any disease. It shouldn't be different talking about death with me than it is with someone without a disease. The difference between Claire and me, however, is that she expects CF to kill her. I can't stand the thought of it killing me. I want to be David, slinging a bunch of rocks and defeating a giant. I want to be Herb Brooks, winning an impossible hockey game for the gold. I want to be the tortoise, so focused on the ultimate goal (living) that he doesn't let even the fastest, most threatening opponent (CF) intimidate him. I want to be an underdog. Because those are the best stories. And dying from cystic fibrosis would just make my story boring.
