Friday, May 18, 2012

Random Updates

Do you know how hard it is to write when you don't know what to say? I do. It's pretty hard. Thanks to the constant badgering mildly curious email from my fellow blogger, The Unknown Cystic, asking for an update, I'm going to give it a shot. He made me think of my Great Aunt Sue, a fiery Italian lady who used to call my mother on the phone and say: "Where have you been? I hadn't heard from you in a while and I thought you were dead!" I apologize ahead of time for the randomness and untrained thoughts I'm about to spew out at you...

• The IV vitamins I've been on for the last month seem to be working. I mean, I guess they're working since I can see at night...which is nice because seeing is fun and I would miss it because my wife is a hottie...especially in the moonlight. My long term healthcare plan is still a work in progress since there isn't much data about my unique case. What else is new? Telling someone with a chronic illness they are an "unique/rare/interesting case" is like seeing me laugh when someone falls down. It's a pretty common occurrence. All and all, I'm realistically optimistic about the future and I truly believe things are on the upswing for me.

(By the way, if I ever do go blind (which would totally suck), I'll need kick ass sunglasses or at least really big clown sized wear and embarrass those around me. Better yet, maybe I'll still wear my glasses just to confuse others. You've been warned.)

• When I ask my dogs "Do you want to take a walk?", I feel stupid because what I actually mean is "Do you want to go for a ride in the car to the park that's 5 minutes away because there aren't any sidewalks on low traffic streets near our house and then go for a walk?" It's a good thing they don't care.

• My early twenties and early thirties are two very different times. A birthday party in my early twenties consisted of karaoke, booze, screaming conversations about incoherent nonsense and falling asleep wherever you could find a place—on the couch if you were lucky, but more than likely on the floor—at 5:00 AM only to get up at 10:00 AM with little or no lasting effects. A birthday party now is a very low key affair with quiet conversations over soft background music or the occasional serenade of karaoke followed by reminiscing about parties in our early twenties. Those memories are intertwined with work talk, house projects and politics that end by 11:00 because their sitters have to get home at a reasonable hour and because everyone must sleep in their own bed because we're old and might not recover if we slept on the floor again. Being old is hard.

• I'm continually thankful for my wife, especially when I learn about the trouble others are having in their relationships. It's never fun to hear "I love you, BUT...". Thank you for sticking by me through everything, Carly.

• I read an article that said if you're in your thirties and you're wearing t-shirts with cartoons on them, you're trying too hard to be young. If that's true, I wonder what they'd think of me for hanging out with a puppet on a regular basis?

• I'm in the planning stages of two, possibly three, new Moganko episodes. Two are still in the writing and planning stage, while the other is simply waiting for this IV to get out of my arm and the volunteers to shoot it midsummer. I've got a few songs in the works too, but that may take a while. I'm really looking forward to sharing all of it with you. Moganko gives me such a sense of purpose and accomplishment. I can't tell you how many times I've smiled and cried from your wonderful emails and the heartwarming videos of your kids watching Moganko and doing their CF care because of it. You validate all of my work. Thank you.

• I'm considering (CONSIDERING) the possibility of expanding my creative talents outside of Moganko too. I feel like I have a lot to offer on the adult side of living with this disease and I know there is an audience that will appreciate a more self-deprecating and mildly wicked humor. We need to be able to laugh at ourselves and the unpleasant and sometimes terrifying things we go through with this disease. Our views change and mature as we grow older, and I want to reach people of all ages to help them laugh a little bit. Nothing too risque, mind you, but definitely not kids stuff. This may or may not include a podcast and a separate YouTube Channel in the very near future.

How will I balance these two different worlds within Joshland? By making sure they are kept as separate and unique entities. I promise you that Moganko will only be for the kids. He'll never venture to the "dark side" of Joshland. Think of it as putting the kids to bed and then watching an R rated movie.  I figure if Eddie Murphy can do "Shrek" and "Coming to America" and Jack Black can do "Kung Fu Panda" and "Tenacious D", then I should be able to pull this off too. Let me know what you think of this idea.

• I'm privileged to be a keynote speaker at a few different CF events across the country this year. I hope to have each of my speeches recorded and posted to share as well. I'm sincerely honored and humbled to be a part of these events. Stay tuned!

• Congrats to many of my friends who have received their new lungs in the past few months. Organ donation is a truly amazing thing! Go sign up to be an organ donor if you haven't do so yet!

• Look for more stories in the upcoming weeks about graduating from college, stupid kid adventures, and a few CF-related opinions.

• What I want more than anything right now is to be at peace in my heart and mind. I'm still working through some personal issues and I'm still hurting from the losses I've had over the past year. If you have the time, send a little peace my way. I need it.

Enjoy the beginning of summer!

Peaceful things,


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  1. Your Great-Great-Aunt Sue had it right, because when people who care about each other stay connected, they are available for each other's needs big and small. But we all need our privacy as well. I wish you peace and joy, my son. I love you.
    Mom xoxox


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