I read this blurb about Patrick Swayze and how he wants to live long enough to see a cure for his pancreatic cancer.
I have turned into such a skeptic.
I don't think I ever really believed in a cure for CF even as a kid when my parents used to talk about it. It just seemed like such a moot point - I felt like they could hope all they wanted, but while I was living with this thing I wasn't about to get my hopes up. As I've gotten older and some understanding of pathology and genectics and pharmaceuticals and maybe just common sense, it is completely obvious there will be no cure.
What has been cured? I can't think of anything. Eradicated via vaccination, yes; prevented via nutrition, education, etc., yes; rendered livable via surgery, or pharmacy, yes. But cured, no. People could argue cancer has been "cured" by chemotherapy or radiation - but not really - isn't there always a constant threat of preoccurance, coming out of remission? They surely don't use the word cure to speak of cancer. So what has been cured? Nada that I can think of.
So I read of poor Patrick Swayze, so quick to wear the cloak of disability: the heroic disabled fighting through until there is a cure, and I just felt bad for the guy. It seemd so much easier knowing the cure is intanglible and unreal than to buy into the idea that there is one on the horizon. I feel like it is the wrong way to motivate. Besides, there are much smaller miracles that I can rely on amazing me everyday.
I had a recent conversation about what life could have been without CF. I used to think if I ever got three wishes from a genie (you know, like that same day they find the cure) I would first wish to have had no CF.
I'm not so sure now. I'm certinaly not all oh-I-love-my-Cf-so-much. I hate it. But I can't think of anything that has been a bigger motivating force in my life than that. Sure through pure definace and rebellion, but certainly a driving force.
I don't think my life would be much at all like the one I know now if I had not had CF. And so how can I really want to trade that in? There are parts I would of course like to eradicate, but as a whole, in the whole cosmic scheme of things I think things have worked out for me as they were meant to in much the same way the earth is just the precise distance from the sun. And I think that force has been so much more real. It was intrinsic: there was no waiting on "them" to figure it out for me. I was who I was because of Cf, not because of what life might be like without it.
I hope Patrick Swayze gets his cure and inspires thousands of cancer sufferers to have hope, but I hope they aren't fighting on for some elusive goal but rather fighting for the sake of the euphoria and the chalenge of the fight itself.
5 comments:
I know what you mean - If I could get rid of some major parts of CF, like maybe actually being able to breathe properly, instead of having crappy lungs, and being able to hear rather than having my hearing ravaged by antiboitics, then maybe CF would be more easy to cope with. But I've always thought, if I didn't have CF, would I still be friends with a bunch of fake idiots? Or could I have found my real friends on my own? Xx
I never have nor ever think there will be a cure for CF. Think of the amount of money that the rx companies make from us. I highly doubt they would want to give up that income.
A few years ago, I am gonna say maybe 4-5, I met with a woman from the Delaware Valley CFF to start my Great Strides fundraising. She told me that there was great hope for a cure within the next 5 years. Well here it is 5 years later and we are no closer to a cure. It's just a way to raise money IMO. But I am a true skeptic too when it comes to that. I don't raise money for a cure, I raise money for treatments. :)
I too feel bad for Patrick Swayze. Poor guy, all I can picture in my head is Dirty Dancing and hoe sexy he was. Ahhhhhhhh :)
<3
You would not be Mata Hari?
Shannon, this is such an eloquent and well-written post. You captured all the "good" parts about growing up cystic without sounding like a cheap inspirational speaker.
I remember when a CF mom once told me the story of a convo she had with her daughter about how "once CF is cured, you won't have to do any nebs or treatments." It made me so sad to realize that so many people are looking to be made "normal" by some miracle cure. I would love to see the day, of course, but I also can't imagine a cure would look much different than the treatments.
I guess we're all mutants for life. Go us. And go you for this kickass post.
Very nice blog!
I know what you mean about people being motivated by a cure. In some ways, we are lucky to have had this from birth, to have our hopes in check from an early age. I think if people are diagnosed with a life-threatening disease as an adult this is a really common coping strategy.
I saw one of my classmates get paralyzed diving into a swimming pool at my 10-year reunion. When it became obvious that he had lost most function in his legs, he turned his whole life into a quest to walk again. While this is admirable, having a positive attitude and all, it also seemed like he was deceiving himself - finding a way to be "okay" with the present just because of the chance that his future might be normal.
I don't know...I wanted to tell him what I saw. But then I thought that I should let him have his journey. Who really knows the best way to handle such things? Anyway, that was a long tangent to make my point: to live for the cure makes you stop living in the present. And there's something that seems really sad about that.
laura
ps - my classmate made HUGE progress in the first year after his injury. He awed all the doctors in his will to walk again. He's now able to walk with those hand crutch things and basically lives an independent life. A happy ending, I'd say.
Post a Comment