Have you ever watched Ultimate Fighting? It’s a simple concept: two fighters enter a caged ring and beat the living daylights out of each other until one of them is knocked out, gives up, or time runs out. It’s pretty brutal and blood is often spilled. I watch 30 seconds before I switch channels.
What strikes me about the cage match is how similar it feels to being boxed in or trapped by cystic fibrosis. Years ago, the cage was much larger and my opponent, cf, much weaker and inexperienced. It was a mental game. But my opponent has grown stronger and learned to punch and cheat and kick me in the groin. The cage walls have moved closer together, too
Over the years, some great weapons have been tossed in the cage: TOBI, Pulmozyme, Hypertonic Saline, AZLI. With them I have been able to give the hulking mass of bacteria a good beating. Or, perhaps, at least moved it back to its corner to regain its strength.
But the cage feels tiny now and my opponent stronger and craftier. The marks of two collapsed lungs scar my right chest, but most of the damage inflicted has been internal, though I’ve seen plenty of the blood. And yet, I am so lucky, as it has hit others much harder and earlier in life. But I still feel trapped by it, as it affects each decision and limits my choices in life. Just the stress it causes alone, is suffocating some days.
But I am lucky, very lucky. I have my family, the CFF, my Twitter friends, my CF team, and Sharktank.org. I know that soon another weapon will be thrown in the ring. And better yet, one day someone will throw in the medieval battle mace of cf weapons.
With my spiked weapon in hand, I am going to beat the living shit out of this terrible disease for all the lives it has taken and the suffering it has caused. And then I’m going to beat it some more. No horror movie ending here where the bad guy gets up again and again. I’ll make sure of that.
Then I’m going to open the cage door and walk out, bloodied but still standing, the enemy defeated. What a day that will be.
Yeah! BTW, I asked my coordinator what my full mutation is, and she said I have double F508, so I’ll be able to take full advantage of whatever new genetics come down the pike.
That’s good news. A silver lining. Are there any studies you can get into now?