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A Heart That Has Been Touched and a Life Changed

A Life ChangedI got a personal e-mail today that touched my heart like none that I can remember. Maybe there have been others in the past related to something I’d been going through or something that I had recently accomplished at the time. This one was different. Since I’ve not asked permission to reproduce it, I will leave the person anonymous and edit it for the heart of the matter. I want to get my feelings out in pixels before they fade away into sleepy oblivion.

I was diagnosed fairly late in life (around 20) and have had my ups and downs since then. Most of my struggles have been with gaining weight and keeping a good fitness routine. My baseline weight was around 105, and I’ve dipped up and down around that number for years now.

A little over two week ago at a clinic visit, my weight was 99.7 pounds, and FEV is 42% with basically no daily exercise. I decided “enough was enough” and committed myself to a regimen that included gaining lots of weight and getting in shape. Your site was actually one of the first I found that helped get me in the mindset that I could do this.

Over the past 13 days, I’ve gained 10 pounds back and have hit the gym (both cardio and weight training). I’ve been posting on CysticLife and other sites, and many people have recommended I try to get in contact with you personally…

Mindblow! He’s, like, my brother or something. Do those weights sound familiar? How about that “enough is enough” attitude? I felt like I was reading a mirror of my thoughts back in March when I had my epiphany. Back then I had no possible idea that I’d ever make a difference in anyone’s life. I was just writing to the interwebs about my weight, more for my own tracking because of my poor memory than anything.

Mac Keyboard

I’ve had a few sincere (and definitely not under-appreciated) comments from people who I’ve grown to know and call fibros and cysters in CF, but this one stopped me dead in my tracks of what I was doing on the computer – a ton of work, as usual.

Did you miss what he said? Thirteen days… 10lbs because he changed his mindset! Did you grab onto it that time. I said “mindset.”

Mindset alone isn’t enough, though

Mindset needs to prompt action. I have had my FEV1 down to 24% during a bad infection and have hovered in the low- to mid-30s for a decade. A decade, I tell you! One third of my life living with one third of the lung function that I should be enjoying as a red-blooded, God-fearing, tax-paying, contributing member of society. Fine, give me two thirds and I’ll shut up. NO! No, I won’t stop at 66%.

There will be medication, treatments, exercise, speaking, writing, motivating, and accountability until everyone who is willing and able to read, listen, and participate in changing the standard of thinking about CF improves their lives, just like he is!

What is your life motto?

I was asked this week what my life motto is. Loaded question, anyone? Sounds like an AP English essay question that you have 3 minutes to plan things out and start writing like a mad man. I’ve been asked dozens of times what my life verse is, so sure, I have my few Bible verses that mean a lot to me for inspiration, grace, salvation, and joy… but I didn’t consider any of those to be a life motto (Rom 8:28 on to 32). Over the last two days, it’s dawned on me, just tonight. So here, for the first time on public record will be written Fatboy’s – Jesse Petersen’s – life motto for this phase of his life:

Change the standard of thinking about cystic fibrosis.

which I may shorten to:

Change the standard of thinking.

The time has come where too many of our fibros and cysters are under siege by their bacteria, their lack of family support, health insurance coverage that is soon to die from, and a lung transplant waiting list that finds more of my new friends 6 feet under than wearing new wings from their surgery. I will gladly lead the way, but our numbers must be known.

Comments

  1. Today I read an article that said the typical “so and so suffers from CF,” and I was like, “why is it always ‘SUFFERS’?”- even when the article is about how someone is kickin butt? Can these wordsmithes* really not think of a way to write an article that raises awareness/prompts donation without defining a teenager in an article who is on a sport, in the arts, doing treatment (sound familiar?) as a SUFFERER? Why not highlight all s/he does and congratulate him/her for being wise beyond their years, and commiting to health EVEN IF there are ups and downs in a this progressive illness?!

    Grr. I love your soap boxes. I always try to climb up and join.

  2. Kristi Bowers says:

    I now call my son a CF WARRIOR and FIGHTER instead of a sufferer. YOU changed my MINDSET on that one ๐Ÿ™‚

  3. It’s emails like those that confirm you’re doing a good thing – what’s awesome, is it only takes one ๐Ÿ™‚ Keep up the good work my man!