From the Blogposts » inbox

What Drives You?

DriveI’ve been having an heart-felt back and forth with a concerned mom via my contact form whose 16-year old son has become non-compliant recently. He’s described as wonderful and smart, but just doesn’t care to do many, if any, of his treatments any more and stopped a sport he had played previously. I got to wondering what drives him, because I’ve been there, done that, and bought the t-shirt.

I had to burn that t-shirt the day I knew I wanted to marry Beautiful, but it still didn’t fully change what I was doing to make sure that I gave us the most time together. I’ll place a lot of the blame on my eFlow not working properly to allow me to actually have the time in the day to do my treatments (and I probably wasn’t getting the meds as I should when I did them most nights). Since that’s a cop-out, I’ll admit that I should have been more aggressive in doing whatever it took to get to a solution to be able to do my nebs properly. I take full responsibility for that end of the deal. It was stupid and will never happen again. Now, let’s get back to the underlying issue at hand: drive.

“If you do not change direction, you may end up where you are heading.”

โ€” Lao Tzu

Where are you heading by doing what you’re doing? How is that working for you? Where do you see yourself in 5 years doing what you’re doing? 10 years? If the answer to either of those is, “I’ll be dead,” then it’s time for an intervention, my friend. You are severely lacking a purpose-driven life.

You don’t have to know the purpose for your life, but you do need to have a purpose for your life. For me, that was Beautiful. It doesn’t have to be the woman of your dreams. It could be to get a certain degree, attain a certain level in a career, or something as materialistic as wanting to earn enough money to have a Ferrari some day. The point is to have a direction to head and then have the intestinal fortitude to make headway towards that goal.

I almost failed at my goal when I got so sick before we got married. I was on IVs something like three or four times that year. It was a horribly stressful year that ended on the high notes of getting married at the end of October and having our first Christmas together with our new Christmas tree. Everything before that day in October took everything I had to make it there. I was fresh off IVs for our wedding and able to sleep all night without coughing every 5 minutes, but I was a roller-coaster of PFT results until this year because I wasn’t compliant. Since then, things have gone nothing but up, up, up. Amazing how the meds work when you take them all, isn’t it?

I had my direction, but I hadn’t put the car into “Drive” yet

Until Beautiful made it abundantly clear to me how much I mean to her and how she would feel to be without me (after repeated attempts at telling me this same feeling), I thought that doing what I was doing was good enough and what happened with my health was going to happen anyway, and in its own time. I was being an inconsiderate jerk thinking that way, but it doesn’t feel like that to the person thinking that until they have their own epiphany.

It was a serious, honest to goodness “I am not going to let CF happen to me. I am going to take this bull by the horns, wrestle it to the ground, tie it up, and shoot it to have for dinner” attitude that I had to put on that night that I decided to turn things around.

Sick and tired of being sick and tired

I’ve heard that phrase at least 100 times on The Dave Ramsey Show podcasts I listen to every morning. Until you are sick and tired of being sick and tired, you are not going to change your ways. After Beautiful said her piece and went to bed, I set into reading the account of someone who had received a lung transplant from having CF. There was a video on her site that told her tale of literally being at the last hour when new lungs came – but what got me all torn up inside was seeing her struggle for a breath. Then her husband put the camcorder down and went to the head of the bed to run his hand through her hair and kiss her and comfort her. He was about to lose his best friend. I put myself in his shoes and thought about how he was going to feel the next day, week, month, year… that was what I was going to be putting Beautiful through at my own hands if I didn’t change.

I was no different than an addict who was destroying his life in that respect, only I was going about it by not doing something.

At that moment I decided that scene would not play out for us because I was negligent in taking care of myself from that point on. If it’s going to happen, it’s going to be because CF is a horrible disease and it would happen knowing that I did everything I could to ensure that doesn’t happen since March 2nd, 2010. 3-2-10: the day I woke up.

  • What is driving you?
  • Are you in “Drive” yet?
  • Are you sick and tired of being sick and tired yet?

Comments

  1. Very good post my man. That is the key in our life's journey with CF, what's the driving force that will kick us into a “grab the bull by the horns” lifestyle. I'm so thankful that that moment hit you like a ton of bricks in March, I want you around for a LONG time, and I know that wife of yours would agree with me ๐Ÿ™‚

    Ronnie

  2. Thanks, Ronnie. It was a big bag of bricks. Yes, she does agree. She hasn't chimed in yet, but she does agree, as sad as the post is when you think about the possibility that I needn't write it in the first place if I had always been compliant. Stubborn people just need to learn the hard way about certain things in life. At least I don't feel the need to try heroin to see if it's bad for me. ๐Ÿ˜‰

  3. rhondab30 says:

    When I first read this post I had tears in my eyes. I am not an overly emotional person, just so there isn't the perception of female = crying. It is easy to envision John being the one in the hospital bed clinging to those last moments and then me being stuck with the minutes/hours/days to come. Jesse tweeted about his clinicians stats regarding compliance and age of patient and I replied that there has to be a motivator to be compliant. No one in their right mind would want to wake up each day and take several multivitamins, medications, and nebulizer treatments. I don't pretend to know what it's like to have CF. I know the frustration I see when those above mentioned things get in the way of family time, work, and school. There are days when non-compliance is necessary (if allowable) just to have a break. People who are on diets and work out routines to better their health get “cheat” days. What each CF'er has to figure out for themselves is when they can afford to take a day off, if they can. I know that without saying a word, when J is doing a treatment or popping a pill it is not because he wants to feel great or have a high PFT. While those things are an end result, it's because he loves us. That speaks volumes.

  4. I used to show up at the lab at 5am when I was 22. There is no way I could do that with all of my treatments. Back then, it was literally, get up, shower, cereal, teeth, and go in 20 minutes. If I'm moving at my fastest, it takes me about 80 minutes to shower, do my nebs, fix and eat my omelet, and get in a 30 minute Vest. I was built like a boxer back then, but I doubt it was doing my lungs any good to have that job for 3 years. Things didn't really get any better in Corporate America, either, so I'm blessed to be able to stay home and work full-time or more AND do all of my treatments. I sure don't take it for granted when I remember how little time and energy I had when I wasn't my own boss.

  5. Cysticgal says:

    One little piece of advice – when this has come up on my blog- is to try to remind parents not to try to solve all of the rebelliousness of adolescence through the discussion of CF. See if these issues can be separate. Not doing treatments is NOT the same as staying out late. Quitting a sport is only negative if it's not replaced by other activity (maybe the kid's not an athlete, I wasn't one!).

    If kids feel like taking care of themselves is an all or nothing proposition, they might just pick Nothing.

  6. Cysticgal says:

    Also, that for adults, a lot of CFers end up single. So, it might work for you to wo”for Beautifiul” – but really, it's for you to live YOUR life, with her. A teen has to choose to be healthy for themselves- for their own choices to remain open.

  7. That's some pretty salient advice. Thanks for that, CG. I went to bed with a heavy heart last night wondering if I was giving good advice, not being a parent, let alone a parent of a CFer. Beautiful assured me that advice is just advice – I don't have to “be right” and giving the “right answer” to everything isn't my responsibility. I'll just be answering things as best I can – as I would do it if I were in their shoes.

  8. Very true, again. Wow, you nailed it and me again with that little clarification. I would like to see stats on male/female CFer marriage rates and what ages they got married. As a stat freak, that would fascinate me. I honestly never thought I'd find someone who could even overlook my scar to marry me, let alone deal with my coughing and other issues. It was when I gave up looking that I found my best friend for life. That may have to be Beautiful's second post, if she agrees to write about our dating and pre-dating years.

    Looking at my blogroll, I think I'm running half and half married and single, with a slight bias toward single because quite a few are in college, and nearly half and half men and women being the one with CF, even though it may be the spouse doing the blogging.