Being my own hero is a difficult thing. I don't have a path already cut out for me to follow, like so many people seem to have. I have to be my own experiment sometimes. I'm on medication that has never been tried before, and that takes a lot of guts. I'm somehow keeping control of a disease that isn't supposed to be very controllable, and for some reason I represent less than 1% of the CF population when it comes to health. In fact I'm so healthy, people frequently accuse me of lying. I take pride in that!
I think it takes a little insanity to live this kind of life. I'm already fully aware that I have at least one screw loose somewhere. If I didn't, then I wouldn't own a dirtbike. Perhaps that is why I'm alive. My willingness to try even the wildest things, has led me to try some lifesaving medication that I didn't know for sure would work. Some of those medications would've had dire consequences if they did not work. It took a lot of faith and a lot of guts to leap so confidently into uncertainty like I have. I'm the only one that I've ever known of who has done such things to stay alive.
People have called me stupid and reckless for trying out non-conventional CF treatments. I've been told that what I'm doing is suicide, and as I mentioned earlier, many big CFers on social media have blocked me from ever seeing their faces again, on the basis that I'm some sort of illness faker. It may sound painful, but I actually feel better about whatever I'm doing, whenever someone who is or knows of a dying CFer takes time out of their day to let my mom and I know that I'm an idiot.
It hurts to know that there's so many people out there with my disease that are suffering so much worse than I am. I can't get their faces out of my head, and I often see them in my nightmares. It's not like I can ever meet them face-to-face to give them a hug as much as I want to, for fear of cross-contamination. CF is worse than anything really, since patients can't even meet up each other for just a simple chat over lunch. I never have and probably never will meet another CFer, and neither will they.
I'm alone and isolated, stuck fighting a disease no one can fight except me. But, I'm not depressed or in pain. My life is far from being restricted to medical treatments and beds. I'm healthy, able, and rather content with life. I'm proud of who I am, and how I turned out to be. I'm a fighter; God's chosen soldier to fight a disease only 70,000 people in the world can fight, and one of the few thousand in the world who can actually win this fight against an incurable and progressing disease. It's a lonely life, but loneliness builds character, and character builds hope (Romans 5:3-5 is one of my favorite Bible verses).
