If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.
So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.
And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)
I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.
This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.
I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.
The Unknown Cystic 
What a weird coincidence that our blog topics were on a similar wavelength…kind of. Have you been copying my paper?
I read this and I’m pissed for you. These are not things we should have to think about right now. Peaceful Things, Unknown.
Oh, by the way…I’m going to live 200 year because I’m going to will it and because I’ve changed my diet to strictly bacon and beer. It worked for the grandpa in “Grumpy Old Men”. I’ll try anything at this point.
Josh,
I am rooting for you to live to be 200, but only if they find a cure. Otherwise, those are going to be 200 long arduous years.
UC
My husband already follows the bacon and beer diet and LOVES it… just sayin’.
This may not be the response you were expecting, but I really liked this post. Don’t get me wrong, I HATE that you are feeling this way, and I HATE the way CF completely hi-jacks our lives sometimes, but I LOVE that you are totally honest about it.
It’s refreshing, in a way, to know that other people get overwhelmed and just plain ol’ pissed off sometimes. The “happy and positive ALL the time” attitude bothers me. I think it’s necessary to allow ourselves these moments of frustration and honesty.
As long as we don’t linger there too long, the land of “fuck this” is a great place to visit. I got a pair of mouse ears with my name embroidered on them the last time I went.
Jenny,
Bacon may be the perfect food. I could eat it every day. Hold it, I do eat it every day on my McGriddle.
Thank you for the comment, which I appreciate very much. I really do hate cystic fibrosis. Some days it gets the better of me.
Dig the mouse ears. I want a pair too.
Best to you and your husband.
John
How did you do that? How did you get inside of my brain like that??? I was just thinking about hard hard it is to “live each day to the fullest” and be “an inspiration to others”, when all you want to say is “Fuck This!”. Lots of love to you, John. I wish I could give you a big, bacteria-free hug…
Stacey,
I would rather live inside your brain. It’s nicer and calm and smarter.
John
You are 100% correct- CF is a giant, inhuman load. It is a wonder that we are able to carry it.
Is there anyone to share the load with you, at least once in a while, to give you a break? Obviously no one can “take it” from you, but it helps me when my husband makes me feel like we’re in this together and that I can tell him ANYTHING (my fears of death, my fear of being jailed in a hospital bed, my fear of leaving my daughter upon death, my fear of CF making me ugly, etc etc). Yeah, sure, I have to be the one that dies and feels like shit a lot of the time, but it comforts me to know that I’m not in the ring all alone.
An exercise I like to practice, that sometimes helps and sometimes doesn’t, is to try and take my life a little less personally. Sounds weird, I know. But when I try to distance myself from the outrage I feel for what is happening (as in, foot stamping, raging, clawing, “How the FUCK is this happening to me?”), and try to see myself as just one of the many millions of people who have walked this earth, it is soothing. Little old me- just one life, no big deal. It helps me get away from the personal desperation of it all, a bastardized Buddhist detachment of sorts.
I wish I could lighten your load, John. (uh oh, does that sound dirty??:))
L,
My wife carries a big portion of the load. She’s the strength of the two of us. I’m the wimp. She’s tough. Without her, I wouldn’t be here. I would have given up long ago.
Thanks for wanting to lighten my load. ;-). Ha.
John