Life at 26,000 feet

I’m not going to live forever. That’s my big revelation for the night. But it’s true. And it has taken me a great deal of time to realize this. I’m not.

I think of my age, 48, cystic fibrosis, and past events. Two collapsed lungs and the small scars on my chest from the chest tubes. A skin cancer removed that left a scar like a bullet hole on my chest because the Vest pulled the stitches apart. A blood clot in my neck that will never go away and required a year’s worth of shots in my stomach to prove itsย permanence. It too has left a mark on my chest, though this one is different from the penetration scars. Blue veins zig zag to create new pathways for blood flow and look like a map of highways across the USA. So my doctor says, the reason they’re there, not what they look like. What I know is that when I take my shirt off there is a story – not all CF scarring is invisible to the human eye.

And there are the hospitalizations. And the episodes of hemoptysis and bouts of C diff. And my irregular heartbeat and mild pulmonary hypertension. And the fact I’ve reached an age that kills healthy people. Cancer, heart attacks, strokes, bad eggs. You name it.

But I need to live 10 more years, to see my daughter graduate high school. That’s my goal. To see her graduate. That was my mother’s goal, to see me graduate high school. She had it easy thanks to my set of defective genes. But now I have my goal and I look out at 10 years and think that is a long time to go and a hard road to travel. How many hospitalizations will there be? 20? 30? What unexpected events will rock me? How many collapsed lungs and how much hemostysis?

I love this mountain

How can I even have the nerve to tempt fate and think that I could make it another 10 years with what life and cystic fibrosis have in store for me? I might as well climb Mt. Everest. Which goal has a better chance of happening? Well, obviously, I can’t climb, so I guess that’s an easy one to answer. But just surviving 10 more years is my mountain to climb, my impossible dream. I may not make it past next month with what’s brewing inside my guts right now.

The question I’ve been spending a lot of time thinking about lately is how I am going to spend the remaining seconds, minutes and hours I have left. I won’t presume to think that I have days left. I’ve learned how the karma of this disease works. Pride and hope and ego get crushed fast and hard. If I just string some of these seconds together, perhaps I’ll get a day. If I’m lucky.

Tonight, denial no longer protecting me, I realize I’m standing at 26,000 feet above sea level in what climbers call the death zone. It’s one step at a time now. It will be a victory when I wake up tomorrow morning. That’s how I’m going to look at it from this point forward.

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15 thoughts on “Life at 26,000 feet

  1. keep focused on seeing your daughter graduate high school my friend, you have defide the crap that CF throws at you for so long keep fighting the fight because in the darkest times that goal will help get you through. And anyway it will take me 10yrs to save up for a ticket to LA! But only enough for a one way flight. ๐Ÿ˜‰ Haha watch out LA me & UC gonna start a riot!

    • You’re funny. I’m hoping that I feel well next year and can bring the family to England to see you. I’d like to see West Ham get there asses kicked at least once in my life. Anyway, that’s my goal.

      BTW, it doesn’t take much to start a riot here. I’ll put the bag on my head, you wear a police uniform and beat me with a baton. We video it and bam, we have a riot cause you beat up a poor crazy person. It’s that simple.

  2. I also want to see my kids graduate high school, but I’ve got 14 years until my youngest reaches that milestone, and at this rate I’m afraid I may not even get to see my youngest get through 1st grade. I’ve also been having thoughts about this “impossible dream”. With every fiber of my being I want to say it’s possible, but is that just denial talking? It’s uncertain, that’s for sure. “Normal” people don’t have to think this way. That pisses me off! I want to be one of those “normal” people. I want you to be one of those “normal” people too.

    • Stacey, Stacey, Stacey,

      I have full confidence that you will not only see your kids graduate high school, but college as well. And grandkids. You’re in a very good position to do this with where you’re at right now. I know the MAC is an issue. However, you will solve that with the help of your doctor. I’ve been in tight spots before that I thought I wouldn’t escape. Keep believing you will make it and you will. Lots of good drugs coming your way and you haven’t had to use some that are available to you now. Lot’s of reason to believe for you.

      I know what you mean about “normal.” I agree. However, you’re closer to normal than I am. I’m a bit . . . I don’t know. Let’s just say I have “crazy” issues. ๐Ÿ™‚

      UC

      UC

  3. I hate to hear you down…..I can hear the defeat creeping in. I cant imagine your struggle until now, I cant imagine how tired you must be….try and hang in there my california friend….keep your eyes on the prize….graduation day will be here before you know it. much love ~j

    • Juli,

      Thank you for the candid opinion. I appreciate it. Gosh, I don’t mean it to sound like defeat, but I am tired. That’s for sure. Once they figure out what’s up with my digestive system, I’ll feel better. It’s definitely wearing on me and wearing me out.

      I always appreciate your thoughts. Football season will make me feel better too. As long as the Broncos win, of course.

      UC

      • Oh im not looking for a repeat, a winning season would do just fine…..Im pretty sure that the Browns stole Fujita from us….hmmmm. I wouldnt mind another underdog team going in for a Superbowl win…..hats off to the Broncos and to the Browns, best of luck to both of your teams this year….dreams do come true ๐Ÿ˜‰ much love ~j

  4. Green Bay and the Colts are playing tonight…..did you know Green Bay has Rogers and Flynn for quarterbacks??? Hopefully they have both improved dramatically….otherwise Green Bay is screwed…..just a random thought. much love ~j

    • Rogers is a pretty good QB. Someone on the radio picked GB to reach the Super Bowl this year. That would be something. Your Saints have history working against them as far as repeating goes.

      • Sorry to butt in….but the Cleveland Browns are going all the way this year! It’s going to happen! I believe it can happen! A girl can dream, can’t she?

      • Stacey,

        I just choked on my chicken and rice soup. The Browns? The only place they are going is to losersville. My Broncos with John Elway crushed their Super Bowl hopes forever. ๐Ÿ™‚ Since you’re a Browns fan, I’ll make sure I don’t root against them unless they play my Broncos or can affect the playoff picture.

        And yes, you can dream.

        UC

  5. It’s a worthy goal and an awesome inspiration!! She’s a lucky little girl. I wish I had something half that meaningful to push toward.

    I can hear the weariness in your words, too, my new CF friend. Completely understandable and at this point, unavoidable. Any new news on the C diff?? When will they decide if your treatment is working?? I’m TIRED of you having to go through this!!

    • Mal,

      I’m glad I’m your CF friend. Nice of you to say. Yeah, I’ve been tired this week. It wears me out to fight the c diff and work. My CF doctor cut off my supply of vanco at 20 days yesterday. The stomach doctor wanted to go to 28. I rolled the dice with the one who brung me to the dance, so to speak. So I stopped the vanco. Now I’m in waiting mode. I think there may be some inflammation or an ulcer somewhere inside. I’m going to have to go in and have them look inside me. Fun. The question is how soon. If I get a bad flare up, it could be asap. We’ll see.

      And I’m tired of soup. ๐Ÿ™‚

      UC

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