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Figuring Stuff Out

ThinkingI’ve had a lot on my mind since Sunday thinking about how CF has affected my life. It’s undeniable that it has touched every area possible: personality, geographic location, health, faith, status, and career. All in all, it’s been a very good week of mulling over these thoughts for such a profound amount of time compared to fleeting thoughts that bombard me every hour. Here’s what I’ve come up with this week.


I’m not quite clear what sort of person I’d be if I wasn’t kept in check with my own “thorn in the flesh” that places limits and constant reminders of them into my daily routine. I have a suspicion that I’d be a pompous, overly confident piece of work. Even as it is now, I swing wildly from being a cocky, self-centered jerk all the way to being a depressing, insecure weirdo. I manage to remain fairly grounded in the middle but those other sides rear themselves more often than I care to think about, let alone admit to. Maybe I’m better than average in the general population, but I feel like par for the course is a little flatter than the roller-coaster I would say I’m riding, as tame of a ride as it’s become with maturity.

Geographic location

My life would look completely different now if our family wasn’t introduced to CF. With 2 kids with CF, we moved from Colorado to Ohio to be closer to my mom’s parents, which worked out fine because Dad’s company had another plant about 90 minutes away from them. Ultimately, that career path gave him a choice between moving  2 hours away or 1,000 miles away to Tampa. My vote was quite strong for Tampa if I had to be ripped out of my school of my previous 11 years. Might as well be warm, right?

If we were in Colorado, there is pretty much slim to none chance that I would have ended up where I was at 23 years old, very attracted to Beautiful, at a very good job that honed my corporate skills, and able to marry her when she graduated from college. So much of our lives as individuals also revolves around where we live and who we are near – no different than anyone else – but, for us, our location was very influenced on CF being in the family.


Spending time in the hospital changes you. So does taking over 50 pills per day, using special milk on your cereal, and being a cougher. None of that compares to thinking about when the end will come and wondering if it’s going to be months or years rather than decades. It brings a new perspective to life that 99% of people never think about until they’ve had their first heart attack or skin spot removed.

We really try to not sweat the small stuff now. Sure, it’s “fun” to get riled up over poor customer service, gas prices, and traffic, but we really don’t dwell on those things for days like some do. What’s big now is saving, quality time together, and building our business to be a source of financial security for a rainy spell in our lives.

I don’t let my health dictate my attitude, but it definitely helped shape who I am and how I respond to adversity. For example, I’ll never be a fighter pilot or pro football player, two things I very much wanted to be. If I ever lost my job and wanted to be a waiter for the tips, that’s pretty much out of the question, given how people stare when I cough, especially around their food.


When you are grounded in your faith and then go through crises, you have two ways to go: reject your upbringing and God or embrace it and see if it means anything in reality. It didn’t take long before the answer to the latter became abundantly clear. I see despair in the CF community every day on Twitter and Facebook. I’ve stopped going to the forums and some other sites because you can’t spend all day telling everyone that the sky is not falling and still make a living yourself.

I know what that despair feels like because that’s what it feels like when you’re looking through a paper towel tube (tunnel vision) instead looking around and looking up. It’s a personal choice, of course, but like any personal choice it becomes evident to others how it works for you and you have the ability to look at how it works for others – once it’s clear what kind of foundation is being built upon.


Status is funny, it’s always changing and its influence on your life is, too. In school, I spent long, long years as the oddball, short, smelly kid who did really poor for a few years and then started excelling like crazy. Finally, I found my voice and started to rise in popularity and enjoying the perks that goes with that status.

In work situations, status is a strange mixture of your rank/position in the company and a popularity contest. I almost always seemed to have a knack for having a decent crowd in my corner and a varying number of people in the opposite corner who wanted to knock my teeth out for various reasons.

Now my status is based on the amount of work I do to excellent standards, my online presence on Twitter and Facebook, my expertise in my field, and how much revenue I bring in. More and more, I am making up my own status based on how often I leave the house to work or do other things that entrepreneurs are supposed to do to enjoy themselves.

So far, I haven’t mentioned CF in this section, but it’s always there. A certain (growing) number of my clients know that I have CF with a vast majority of them admiring my determination and grit to excel despite the hand I was dealt. I also have a certain status based on health, work, school, living quarters, and marital status that everyone falls into, but CF automatically puts me into a certain health status, but I refuse to let it pigeon hole me with every category.


It’s been a long, long, long road, but I’m finally where I need to be: being my own boss. I was a fiercely loyal employee… up to a point. There seemed to be a certain point at every job where I knew better than my boss(es) and life became an agonizing daily routine that was eating at my very soul.

Career also had a huge impact on my health because I was often getting up at 4-5am and working until 5-6pm, sometimes 60 hours per week. There was no time to do treatments or get the amount of food I needed in those conditions. I was on IVs more and more every year until 2006 was either 4 or 5 times by October; I eventually lost count. Most evident of that detrimental situation was needing to get a port because they could no longer get a PICC through my valves in my arm. Getting married was the best thing that had happened to my health. I instantly gained 15lbs and went about 13 months without IVs.

Even that doesn’t quite beat the improvements of being my own boss, which actually started out very bad for my health. I wasn’t sleeping and was very depressed over the loss of my job. The dedication to get healthy would not be possible without this working situation, though. I have no excuse for not doing all of my treatments, going to all of my appointments, and eating all day long – within monetary reason.


  1. Good introspective, Jesse. I’m still amazed at how transparent you’ve become.

    It’s amazing how we can look back and think, “Wow! I’m sure glad I’m not like I was 10 years ago.” And then, 10 years later, think, “Wow! I’m sure glad I’m not like I was 10 years ago.” I’ve done it quite a few times now.. 😉 The maturing process should never end.

  2. MiddleAgedLady says

    I love this post! I can relate to every category you defined. And in mostly the same ways. I applaud you for taking the words right out of my mouth, in such an eloquent way.

    • Awww, thanks. I was (for some odd reason) feeling really insecure about publishing this one because I didn’t think it really came around to make a point in the end. I’m glad you enjoyed it, then.

  3. Simply put… CFers have the most beautiful souls that any other human being will ever come into contact. I have always said this since I met my husband 16 years ago and I will say it until the end of time.

  4. Aunt Sandi says

    Good to examine our lives once in a while. Even though there are things that have major affects CF for you, RSD for me. Once you’re over the occasional (or frequent) bump in the road life is pretty darn good. Excellant post.