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Adding Another Career to My Cystic Fibrosis Life

Posted Nov 09 2010 12:00am
4th Anniversary

4th Anniversary

Being done with school was a big deal for freeing up my schedule, but now it’s been full again… and it’s about to get more full. Remember, Fatboy is not a victim of cystic fibrosis!

I can tell you more details about my next career move now that things are a LOT more concrete. I’ve mentioned on there and my social networks that I now have a Manhattan PR firm representing me and my public CF interests for advocacy, awareness, internal and external publications, websites, product testing/reviews, media coverage, and public speaking. That got me pretty excited and I was more sure than not that something was going to come of it, but it only took a day.

Gilead (makers of Cayston) will be flying a film crew here to spend the day with me in late November or early December to see what a day in the life of Fatboy looks like, film me training for the 5K in February, and there is talk of coming to film me crossing the finish line (no pressure, Fatboy!!) on race day.

I had another call with the PR firm the next week and they sent me another contact that same evening about another entity of Gilead who pretty much want to “use” me for all of the activities above. They will be sending a welcome packet in the mail now that I did an hour-long phone interview with them today to find out pretty much everything about me to know how best to call upon me for certain opportunities, which I said “yes” to all of.

This would be pretty overwhelmingly exciting and potentially lead to giving me a big head if it wasn’t for my new-found goal for actually using my having CF for good. Not to be morbid, but most CFers make the most difference when they are sick, dying, and after death by impressing their strength, determination, and usually positive attitude on others around them. I have a broader, longer-term goal.

I’m out to change the standard of thinking.

I said this almost two weeks ago after reflecting on my life after my second day of 5K training. Tonight, I shared this with 8 of our closest friends and everyone was very positive about this being a real need. Shoot, one friend wants me to go to Hong Kong and be the face of CF over there because they are definitely under cared for and uninformed of all of the advances we have here.

If that’s not humbling, there’s something wrong with me. It’s finally starting to sink in that we are making a difference together. It’s not just me writing. It’s also you reading and changing your lives. Some have thanked me for leading them to a new medicine or equipment. Others just like the real talk here. It’s down to earth. I try to keep it mostly positive, but I could easily come up with 10 pretty dark posts out of the nearly 200 to date. I’m an eternal optimist, but Beautiful is a realist all the way to the core. We complement each other perfectly that way to keep each other from swinging too wildly to one end of our natural spectrums.

If I can change the mindset of just a handful of CFers, and I’d be blown away by just one to start with, my years of dealing with this crap called cystic fibrosis will already be worth it.

Let’s raise a new generation of CF babies and kids and teens who are compliant, fat, and who exercise relentlessly to keep the deadly aging effects of CF at bay and give them something normal to be concerned about like the rest of the population, like arthritis, memory loss, and being cranky old farts because none of the young people make any sense to them when they’re *gasp* 75 years old.

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