With the afternoon free, I should be getting some homework done and doing something productive. But instead, I am sitting here researching all I can about the new Vertex drugs, somehow thinking that in the next 2 hours, there will be news that Vertex has made a breakthrough drug for DF508 (the most common cf mutation) and that it is being approved by the FDA. Now clearly, I am way over-thinking this and being far too optimistic…. big change will come with time, like years… not right this very second. What I’m finding though, is great hope that it’s in the works, and though it may not be as easy as the first one, it’s getting there (most of my hope came from this great blog which you can view here ).
Once I heard the news about Vertex seeking approval for the drug that will change the lives of those with a rare mutation for CF, I became obsessed. This is really happening. And then, though it brings tears to my eyes every time I hear a story of someone’s PFTs going up 15% and of them planning for their future…I became selfish. I am so so so so so happy that Vertex and CFF have been able to make this incredible improvement. But I’m only human, and of course, I am hopeful that I will be able to be affected by this great progress. The impatience (which is already a chronic problem that I suffer from in addition to CF) is unbearable. Knowing there is something out there, whether it is discovered or not, that is so close to changing 90% of CFers’ lives is like…. some crazy analogy where there is something you are looking for right under your nose but for whatever reason its going to take you a few years to find it (sorry… I’m awful with analogies)….. Frankly, its driving me nuts!!!
But what I need to remember here in my obsessive, optimistic, impatient, hopeful state of mind is that I gotta live for today. Change doesn’t happen over night, and its silly of me to spend so much time wishing and hoping for that to happen. So for now, I gotta live like there’s no great news of a great breakthrough looming over my head…. and right now that’s almost impossible to do! But just because there might be something down the road, doesn’t mean I have to put my life on hold until that day comes. Right now, I gotta keep on living, keep on running, and keep on breathing. I have to keep on doing every thing I have been doing for the last 21 years and worry about the future when it comes.
Getting stuck in thinking about the future has always been a problem I’ve had (I know right, I’m not perfect? Go figure…. Just kidding). The future has always been something that bugs me… whether it was thinking about how little time I had left, planning too much to squeeze everything in, or worrying too much whether the hard work I’m putting in now will even be worth it 10 years down the road. But now it’s bugging me with hope. Its teasing me with promise. It makes me wonder how much more opportunity there may be in my life. It’s like I know that in a few years like 12093823 doors will be opened and I won’t even have enough time to see what’s behind each one. And I think the worst thing is knowing that in a few years, some people with CF will have passed, and will have missed the great news in knowing there may be something that makes them maybe just a little bit better. I don’t want to wait. None of us do. But the cold hard truth that we wish we could just spit out and refuse to swallow is… we have to. Our whole lives have been a waiting game. So what do we do in the mean time? We just keep living. We keep on keeping on. We throw our support in whatever promise presents itself. We keep praying. And most importantly…We love this life with all we got, because there’s no time to waste worrying.
