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200th Article: Changing the Standard of Thinking

Well, we’ve done it! Fatboy has 200 cystic fibrosis posts out to press since March that have changed my life and many of yours, and I couldn’t have done it without you reading, commenting, and spurring each other on to become better than we were the day before. Sure, there are times of two steps forward and one step back, but think of where you and I were when we started, each at our own time. We’ve encouraged and informed until our collective body is better for wear rather than letting nature take its course on us.

Congrats! Sit back and relax (if you can) for this long, evolving brain dump with an excellent climax and conclusion that won’t disappoint. (Or you can join my Changing the Standard of Thinking campaign now, knowing you want to without reading this).

Time for a major change

If there is one thing certain about my life it is: your life will always be in a state of change, no matter how hard you try to stabilize everything. I started this site with the two-fold goal of journaling my journey to 23BMI and to test the waters to see how I handled essentially “coming out of the closet” about my CF in a much more public way than ever before. My weight has come back down the low to mid 120s, but my doctor is very happy with things as they are, and other life events are preventing me from keeping eating as my primary full-time job. In order to ensure being able to put any food on the table, I’ve had to concentrate on completing the work that is scheduled and leave eating to mealtimes. But there is good change in the air…

The future is bright

PaperThe last paper I wrote as a college student in May could have been confused with a manifesto of sorts to gain a following for my opinion. It would be either loved or hated, but little in-between. My professor didn’t agree with my stance but could not avoid the power and passion of the words, saying I had a sincere enthusiasm and perfect word choice to accomplish the goal of the paper… but I didn’t stop there.

I’ve written several calls to action and pieces for inspiration that have both bared my soul and made me more aware of my thoughts and feelings. Recently, I realized that writing and conveying these is quite possibly my greatest strength. That was when I decided to contact a PR company that I was put in contact with for another project. They gladly accepted to represent me, and so now I have a second and third (who know how many in the future) avenue to finally do what may be my purpose in life: help others with cystic fibrosis and those who know or care for those who fight the fight every day.

What good can come from having CF?

DespairI don’t know how many times I’ve heard recounts of someone telling a new acquaintance that their son or daughter has CF only to have the other person’s response be, “oh, I’m sorry.” Sorry for what!? I don’t want someone to be sorry for me or my wife, parents, grandparents, or aunts and uncles. When the time comes, I sure as heck don’t want someone saying that to my kid(s). It’s meant out of kindness, I’m sure, but think about it… what an awful thing to say. Sure, it’s terminal in the sense of medical conditions (I hate even using that term), but not one with absolute certainty that denies one from living a full and productive life.

I’ve gone on for hundreds or thousands of words so far about the fracture in the community of those of us who go for life with gusto, getting advanced education degrees, high-power jobs, getting married, and having or adopting kids while others live at home with their parents, never go to college, and never bother to get a job. There are also compliant and non-compliant CFers, though who those are is a mixed bag of the previous split because some are non-compliant because they are so busy and some are compliant because they’ve never bothered to fill their life with anything of meaning (who can’t do aerosols when their day is filled with TV and video games?).

HEARTI’d also be remiss to not mention parents who are just getting into this new life because of newborn, toddler, or even a teen who has just been diagnosed. I see the freak-outs on the CF forums. I see the despair and anguish on Facebook and Twitter every day. It’s got to be rough to be hit from so many angles. My heart is full of a strange mix of sympathy, empathy, and apathy – my heart goes out to parents who are uncertain of the future but want their child to have as normal of a life as they had and go through nebs, Vest treatments, and a special diet for them all in the name of a better life. You know who you are. – HEART –

This is good

My parents were in the same boat 32 years ago next month. I was diagnosed at birth because of that stupid meconium ileus that kept me in the hospital and on watery formula for weeks… but what about my 18-month old sister? Yup, she had it, too – and now things started to make sense about her failure to thrive and the other things associated with having CF without taking enzymes or doing aerosols. She lost her battle after only 51 months on earth. How is that good?

Kiss MeMy parents survived. I don’t remember a thing about it, but I felt the effects every March and June. They stayed together. I learned what love was, not at the time, but when I got married to the love of my life, my Beautiful. I won’t go into the details in this one, but being sure that she was sure she wanted to continue with the idea of being hitched to me to the end, no matter when that would be or what it’d look like was paramount on my mind over the summer of 2006. We had many discussions with quite a few that left both of us in tears of fear, excitement, and unconditional love for each other. Those still happen when life gets rocky and uncertain due to my epic chromosomal failure.

My health continued to be a roller coaster of decent health followed by a crazy infection and 2 weeks of home IVs every few months. I had a very high-stress job with early hours followed by evening classes and homework – and later late night freelancing to help pay some bills. I was regularly working 60-70 hours per week between the three for months at a time. I was quite non-compliant. Doing treatments just wasn’t happening. My eFlow wasn’t working right, so nebs took forever, so I didn’t always do them, we couldn’t have afforded everything we do now, I’m sure, and I wasn’t taking vitamins or exercising.

A series of epiphanies can change everything

For the hundredth time (okay, maybe only the 99th) time, Beautiful tried to get me to do everything I was supposed to… you’ve heard the story before. A wife’s love and parents’ love – they will do anything to keep you around. It’s staggering to think about how many hours of manual chest PT we did when I/they/we were dead tired. Morning nebs and PT would start at 5 or 6 am on school days – I can still remember hearing crickets outside in the dark. I’m so expensive and high maintenance in order to be compliant, it’s embarrassing and guilt-inducing. Some time late that night reading the lung transplant story and watching their video of how they were just a day or two from death’s door changed everything in my mind about having CF – some immediately and some things paved the way for later thoughts. I could not bear to think of putting Beautiful by my bedside while I struggle for every breath.

Something had to change. Everything had to change.

Change the standard of thinking

If we don’t, individually and collectively, change the standard of thinking about how to approach life with CF, how to approach others who have CF, and how others perceive us, we are selling ourselves short. We can’t wait for medical advances to take us to the next level of health because we need to start heading there on our own with what we’ve been given so far!

Here’s what we have and what we know:

  • antibiotic and anti-inflammatory inhaled meds
  • chest physiotherapy
  • vitamins
  • high-calorie supplements
  • hormone therapy
  • exercise increases overall pulmonary function
  • BMI above the danger zone can prevent pulmonary function losses that would otherwise be experienced on an annual down slope
  • we are not on our journeys through life alone

Barring some freaky resistances or extreme bugs, if we realize and utilize those things we are almost certain to improve our lives and not settle for the CF status quo! Do you know what the CF status quo is?

“Your PFTs start up here and gradually slope down to here. At that point, you can decide to get listed for a double-lung transplant or we’ll keep you comfortable as you die.”

That’s it, people! That’s what we’ve been told. That’s what I’ve been told and my parents have been told – by more than one CF specialist – and it’s unacceptable! Fighting doesn’t mean to do this or that knowing that things will get worse, so just deal with it when worse numbers happen at clinic. That’s what “CF sufferers” do. Are you a “CF sufferer” by mindset? I’m tempted to call those people “losers” right here and now, but I’ll refrain. I’m going to have to use some strong language and a powerful tug as I go forward with this, so I’ll think of something soon.

Who is with me? I know some of you are feeling the fire in your belly because you’ve e-mailed me. I’ve seen you getting riled up on your sites about these things, too. You’re starting to exercise and aiming for a 5K, too. I am simultaneously pumped and humbled by the reaction. Let’s take it a step further. Join my Change the Standard of Thinking campaign and I’ll send you updates and information on spreading awareness, joining programs, and getting access to the right people and programs as I start my new journey as a patient ambassador. I foresee prizes, too.

Take care, and breathe easy.

Comments

  1. I’m metaphorically giving you a righteous fist pump!! You’ve been such a Godsend to me on my family’s CF journey. Never accepting the status quo, speaking up and acting out, a bullhorn for ‘the community’.
    It gets hard, sometimes, not to get weighed down by it all. I’ve been having a hard time lately coming out of ‘crisis mode’. I want to thank you for being compassionate but not patronizing. It’s incredibly hard for me to not feel ‘tough’, and J’s diagnosis has been a public exercise in vulnerability. In you and others, I find that I can be both, without losing ground. And that makes it so much easier to find my voice and add to the growing noise. I will not sit back. I will not accept status quo. My child will not be a victim of CF. I’ll end with a quote that’s been on my mind all week.

    “Speak your mind, even if your voice shakes.”

  2. Great post Jessee! It is so empowering.

  3. Hey Dude! I think your positive attitude will help push the message forward, and we’re with you every step of the way. Excellent post, and looking forward to reading the next 200 articles. ๐Ÿ˜‰

  4. WOW! Well done, Jesse. You have my total support!
    Now, if you’ll excuse me, I’m going to go share this on facebook.

  5. Wow, Jesse! I don’t know where to start. What a revolution you’ve had in your mind lately. This might get a little long, but a long post deserves a long comment. And I hope you don’t mind me telling a story or two that might encourage some other parents.

    Your mom remembers that when we’d take you to to clinic in Toledo they would ask how many times in the last week you’d missed your aerosols. She’d say, “None! Why should he miss them, if he needs them?” I don’t think we did PT with you all the time. You didn’t have that much lung involvement early on – partly because of your particular mutation, but I’m sure part of it was how incredibly active you were. But from time to time it was necessary. I always liked the manual PT, both with you and with Rachel. It was very demanding and I didn’t especially look forward to it, but it gave us time to talk and that was really special.

    I know we pushed you hard as a kid and more so as a teen, probably me a lot more than your mom. And I also know you resented it sometimes. (All the time?) I was really scared that I’d end up alienating you for life, but I couldn’t bear the thought of you becoming passive, feeling sorry for yourself, and just waiting to die when there was every likelihood that you could live longer than me. But you hung in there. God gave you a special internal toughness and determination. It just took the right combination of loving and prodding and all of a sudden you had that epiphany. I’m not at all surprised, but I have to say, I was a little scared sometimes. ๐Ÿ˜‰

    Moms & dads, don’t be afraid to push your CF kids a little. I know it will feel terrible, and only you can judge how tough your kids are, but don’t be surprised if they are tougher than you think. Keep them as active as you can and try not to let them feel sorry for themselves. We saw a movie not long ago about a mom who was like that with her autistic daughter. It’s called Temple Grandin and you might find it inspiring. Mildred & I sure did.

    I saw the difference between Jesse & Rachel the day they were each born. Jesse’s heard this lots of times before, but I want to tell you, his readers.

    For those who don’t know the very earliest of our family’s history with CF, Jesse and his older sister both went into infant ICU the day they were born – Rachel with pneumonia and Jesse with his glorious meconium ileus. When they stuck Rachel in the heel for blood gas, she would scream and draw back. Jesse screamed too, but he didn’t draw back, he kicked the techs in the hands. And at feeding time, Rachel would keep falling asleep and it took forever to get her to finish her bottle. Jesse wasn’t so good at digesting, but he’d nailed the eating part. He practically sucked the nipple off the bottle and finished faster than any other baby they had there. And then he’d belch loud enough to be heard in the hall. The nurses joked that they wished he could give eating lessons to the other babies.

    He’s a little more polite now, but otherwise, he hasn’t changed a lot.

    Even when they got older there was a huge difference. Rachel was wonderfully compliant and just a stern look would bring her to tears. But if Jesse was given the choice of doing a chore he didn’t like or getting a spanking, he’d usually choose the spanking. It took a ton of God’s grace and a pile of love from his bride to turn Jesse’s negative stubbornness to positive drive. Very cool to see!

    I love you Jesse, and I’m incredibly proud of you. I always have been. God might get the glory, but you’re getting a big hug when we see you in a few weeks.

  6. Proud of you Jesse. Blessed and amazed with your sharing big brother. Thank you both.