Growing up in the grounded middle class environment that I did there were always sign posts along the way that I told myself I was supposed to follow, life sign posts, check boxes. Four years of college (being 2000 this was still possible), career, house, marriage, kids. Not wanting to appear different I never let myself believe that my friends would be the one to pass these sign posts and I would be left miles behind. Deny, fight, suppress, move on.
Turns out this was a bad view to hold onto, particularly when battling CF. While clinging to this view I ended up too far behind to catch up. Never conceding to a notion that I should take another route in life, one more suited to living with Cystic Fibrosis and all it’s pauses and disappointments. College; never finished. Career; Never started. I still get asked what I do and receive either a blank or baffled face when I say I don’t work. More on this topic, if I may…. I never realized how much people define other people by there place in society through one’s job. When I tell someone I’m not working they really don’t know where I fit in and this is a problem for them.
    “Ok, well, what would you like to do?”, always the next question.
    I’ll say, “I think I’d enjoy writing speeches.” More often than not this will be interpreted as I have written or will be writing speeches in the near future. No, this is not the case.
House: My parents
Marriage: Limbo
Children: Infertile

    Don’t let me lead you on, I’ve made some mistakes. I have an oppositional defiant vein that runs deep, strengthened by Cystic Fibrosis; it’s untimely and joy destroying whims. Ok, to be completely honest I have a oppositional defiant vein that is big enough to wrap my laissez faire vein within it. Guess I should have taken into account these characteristics also. Things blurred. I’d fight, move forward, stop moving forward, sabotage myself, get sick, move back, feel great, feel bad, experience anxiety, joy.

    Of course, if you’ve been following along, there came a time not long ago when my life became a hyper focused, compacted sub atomic particle of denial, sickness, love, fear and the strangest of dreams spaces. It was a pseudo-existence. Death was sitting on my shoulder. Being the person I am it took several people to force me to look at in the face. I love these people and owe them my life. Their vision was 20/20.

    So here I am. Thirty six years old. Nine months out from lung transplant and experiencing a very awkward rebirth. It’s Athena falling not fully realized from Zeus’ head (missed too many sign posts for that), but flopping gracelessly down on the clay, lacking some vital stats and experiences but having new breath and legs that are ready to stumble in a forward motion.

Simple Health Update: I’m doing very well. My last chest X-ray showed clear lungs and my recent labs indicated good levels. I have my 9 month bronchoscopy on 5.28.2018 and hope to have some of meds lowered or stopped if the bronchoscopy shows I’m doing well.