Tuesday, August 31, 2010

Life Is Much More Than CF



Another piece of my soul is forever in Seattle.

Last time it was for Breathe. This time (in addition to witnessing some Minnesota Twins victories against the Mariners with the "K Twins Group":-), Carly and I had the pleasure of meeting three very special people. Seeing these kindred spirits in the person was an awesome experience!

First, there was Sarah Morris from Breathe 4 Tomorrow Foundation. Sarah is the real deal. She's one of the most thoughtful and caring people I've ever met. We spoke very little about our illness (she has CF too) because our friendship goes beyond that. We had a great time talking about baseball and life while cool gusts of wind that were blowing in from the Pacific coastline permeated the upper deck of Safeco Field.

It was really hard, but we were very good about staying apart from each other. We had a little help from my wife who we used as the buffer zone and hug exchanger. It broke my heart that I never got to hug Sarah. It's times like these that I hate the damn "3 Foot Rule", but we made it work and still had a fantastic visit. Thanks for spending time with us and for being such a great friend, Sarah. I know a "wife hug" isn't the same as a "Joshy hug", but it's still pretty good. Next time we'll make brunch happen. Oh, and thanks for telling the Mariners to "let the Twins win a few." You are one in a million and I adore you, sister. You are more than CF.

The next morning, Carly and I had brunch with Brad and Sarah Jones - Conner's parents. I had no idea what to expect when I saw them. Would it be too hard? Would it be awkward? I wasn't nervous, but I was prepared for anything because I knew our meeting had the potential to be emotionally overwhelming.

You know what? It was all smiles.

Big hugs, talk of sandals (followed by husband eye rolls), football, baseball, Pike's Place Market, dirty kids at grandma's house, and who does the lawn work in the family filled our breakfast table, save a minute or two when the food FINALLY came. Yes...we talked "CF shop" a little, too. We talked about blogs, about meds, and of course, about Conner. Yes...there were a few tears, but they were brief and needed. I bit my lower lip to hold them back.

Moganko also made the trip to Seattle for a special picture with the Jones duo, which brought smiles again. Sarah shook Moganko's head back and forth which spiked out his hair like he had put his finger in a light socket. A precious chuckle from "Mama and Papa Bear" and I knew Conner was there in spirit. When the waitress brought our check she asked "Is that a Muppet? What do you have that for?" We all just grinned.

The Jones Family are doing well and taking things day by day. The opportunity to give them both a hug was a very special gift that I'll cherish forever. I held that hug for an extra second especially for all of you. They are more than CF. Conner was (and forever will be) WAY MORE than CF.

It's so important that we take the time to define ourselves instead of letting other people and things like CF do it for us. WE ARE NOT CF. Yes...we have a little extra to deal with, but we are people who live our lives the best we can...just like anyone else. Angie, Conner, and so many others have taught me that.

If you have CF and are reading this - whether you are temporarily stuck to an IV pole or an oxygen tank or you just climbed Mt. Everest: YOU ARE MORE THAN CF TOO. Your story is just as important as anyone else's, but don't forget that CF is just a part of your story. Never stop being who you are and looking toward the future. You owe it to yourself.

Much love to Ms. Rabbit and The Joneses. You have a special place in Joshland.

Now, If you'll excuse me, I have other "things" to be. :-)

Peaceful and "MORE THAN CF" Things,

Josh

Wednesday, August 25, 2010

Keeping "A Yard" Away Is Hard: My Thoughts on the CF "3 Foot Rule"




















The CF 3 foot rule (or even further away if desired) is the agreed upon safe distance that the CFers should stay apart from each other since the risk of cross contamination was discovered in the early 1990's. (It may have been discovered before then, but that's when I recall noticing it as a kid.)

The purpose of this rule is to protect the cystic fibrosis community from sharing bacterium with each other, thus creating super bacterium bugs that are immune to our current antibiotic treatments. Think of the movie "Starship Troopers" going on within your body. Yuck.



It also protects us against contracting burkholderia cepacia (AKA b. cepecia) or MRSA from one another. These are two very nasty bacterium that some people within the CF Community have. They can cause a major decline in our health and - in the case of b.cepecia - prevent potential lung transplant candidates from getting on the transplant list! Of course, there are many CFers with b.cepecia and/or MRSA that are doing marvelously, but because these bugs affect everyone differently, people who knowingly have them are restricted from attending CF events. (At least b. cepecia patient are restricted. I'm not sure about MRSA, but I would guess so.)

Had we known about cross contamination sooner, perhaps some of the people with CF that we've loved and lost would still be here. Perhaps we wouldn't have some of the "super bugs" we currently have in the CF Community. It's little bit of wishful thinking on my part because I want my sister back so badly.

Separation from one another is a good thing for our physical health. Unfortunately, it wasn't until the invention of the internet that we'd regain the small piece of our lives that we'd lost. That piece that everyone needs: real life interaction with our kindred spirits. Relationships that only someone who has walked a similar path would truly understand. For example:

Cancer patients are very susceptible to illness while on chemotherapy, so they are kept a part from others. Hopefully, the chemo works it's magic and makes the cancer goes away (which kicks ass because cancer is a bastard that I don't wish on anyone!). If it does, then those cancer patients can reconnect with each other, embracing like long lost relatives, and showing solidarity by walking hand in hand at the Susan G. Komen 3-Day Walk for the Cure.

That's what we USED to do too...

Before the 3 foot rule, CFers were sharing hospital rooms, going to CF camps, holiday parties, and exchanging affectionate handshakes, high fives, hugs, and smooches. A lot of my sister's life was spent as hospital roommate with her CF sisters, swapping war stories, crying on each others shoulders, and holding each others hands during IV pokes and daily blood draws. This was her "CF family" who just "got it." But it's not like that anymore. Now it's private rooms, isolation, and doctors with masks and gowns that look like hazmat suits. It can make you feel like you are some kind of a freak with the bubonic plague. When the isolation protocol happened, it was a pretty tough transition for a generation of CFers who were so used to the close quarters and camaraderie. It's a security blanket that will never be here again.

When we CFers walk at the CFF's Great Strides Event it's at least three feet away from each other, but sometimes it feels like a mile.

To quote A Tale of Two Cities:

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness..."

Joshland Note: Is anyone else crying from laughter because I used the terribly cheesy sci-fi movie "Starship Troopers" and the classic novel "A Tale of Two Cities" in the same blog post? Sweet Lord, I hope so because I just realized it and I had to stop writing to compose myself. I'm glad I can amuse myself even while I'm being serious. Now, where was I? Oh yes, 3 feet...

It kills me that I can't give my CF friends a hug when I see them because I love them so much. Anyone who has ever met me knows that I'm the huggiest hugger that ever hugged. And, as I recently discovered, now it's even harder for me when I'm at events because those little CF kids love Moganko and want to connect with this puppet who makes them happy. That means they also want to meet the guy that he hangs out with (That would be me for those of you keeping track at home). Believe me, I'd love to be able to sit down and play with you or your kids without worrying about getting them sick. Sadly, I do worry. That's why I do my best to keep my distance...

But when you're in the moment, mistakes can happen. I'm talking to so many people and someone asks for something so genuine and normally harmless - a quick photo with a gentle squeeze or a handshake to wish you well. All of the sudden we'll remember we both have CF and sometimes say "Oh shit, you have CF!" At that point, I'll back away and politely excuse myself to go wash my hands. Or the CF kids who sweetly reach out to touch Moganko even though we are observing the 3 foot rule (I know we are because I measured my arm with Moganko on it and it's over 3 feet at my full puppet/arm extension). If they happen to touch or get too close for comfort, then I go wipe down Moganko while their parents go to scrub off the germs. I do the best I can, but I ain't perfect.

What about CF clinic appointments? CF readers, how many times have you gone to your clinic and wondered how often they really clean the waiting rooms or who was just sitting in the seat you are sitting in right now? What about touching the elevator buttons? What about the door handles? Holy hanna, if you were to dwell on it too much it would make your head spin! I don't usually wear a mask when I go to clinic, but I watch what I touch and where I sit because of the high traffic of CFers and sick people going in and out of there on a daily basis. It's so frustrating to live in "red alert mode" during those CF-related situations. When the first words out of my mouth aren't: "Hello, nice to meet you!", They're often: "Do you have CF and are you sick?"

I'd rarely ever act that way under normal circumstances. Do you think I'd say something like this to a waiter at a restaurant:

"Say there sir or madame, what do you think of the chicken here? Oh, and by the way, do you have cystic fibrosis? If so, could you make sure not to touch anything on my plate or slobber on my chicken? Thanks."

Sorry, I'm not that big of a germophobe. I have to live my life, for goodness sakes! I could get sick anywhere I go, but not going to fret about going to a public place just because I MIGHT get sick or run into another CFer. I can't control my environment, I can only control my reaction to it and do my best to prevent illness by washing my hands, covering my mouth when I cough, and keeping my distance from sick people.

If you have kids with CF, you need to take care of them. I get that. While I think it's really important to be cautious with your kids health, they also need to live their lives! They will get sick. It's a certainty. Find your boundaries by letting them explore the world. Let them build their immune system. Let them go play and get dirty. Let them be in sports or after school activities. Let them have sleepovers without worrying about germs at other people's houses. LET THEM BE KIDS! You only get one crack at that in life. I'm so glad my parents let me be a kid. It's one of the best things they ever did for me. Love you, Mom and Dad.

Joshland Note: I fully realize that some of my readers and/or their kids have immune systems that are compromised for one reason or another and, therefore, they have limited public activity. I have nothing but respect for you because I watched a life similar to yours through Angela. She was restricted too, but she did her best to be social when she could because she needed to live her life and feel normal. Be smart and do what's best for you.

The "living life" state of mind is why there are CFers that don't necessarily follow the "3 foot rule". They just live for each day and feel like if they don't give energy to things like cross contamination, then it won't happen. I see their point. Who the hell wants to live there life in fear? I used to be that way too. Most of the CFers I know who don't follow the rule are VERY RESPECTFUL of those that do. That's all we can ask of them.

Here are some of the well-meaning questions I've been asked regarding the CF 3 foot rule:

Q: Why can't you be around other CFers? You and Angie lived together and you both had CF.

Yes we lived together, but we were brother and sister, so cross contamination happened by circumstance. This happens with all relatives and it can't be avoided. However, CFers outside of our family circle have different bugs surrounding them that our immune systems might not be able to combat because it's new to our environment. It's like introducing an new animal into ecosystem that can't sustain it's needs. It wreaks havoc on that environment and can wipe out a whole area if it's not controlled.

Q: Can you (insert activity here) together?

We CAN do anything our hearts desire as long as we maintain that three foot distance. Sometimes we'll even don masks so we can get a little closer, but more often than not we stay away from one another to protect ourselves. The invention of the internet has given us blogs and social networking sites like Facebook, MySpace, Skype, and - the CF social networking site - CysticLife to keep connected to one another. Thank goodness for all of them! However, nothing will ever replace that face to face contact and those moments where all you need is a hand on the shoulder or an embrace to shelter you from pain that only another CF patient can understand.

Q: If cross contamination is so bad, can CFers get married?

Yes, but you run the same risks of swapping bugs and such as a family with multiple CFers in it. There are CF adults who have gotten married to one another. I say more power to them. Sometimes the heart wants what it wants and we can't control who we fall in love with. If they are happy, that's all that matters. They are adults and can make their own decisions.

Q: But weren't you all in the same studio for the "Breathe Song Event"?

Yes, but on different days. Each individual would record their part and then the CFvoice.com crew would go through and sterilize the begeezus out of everything in the studio several times over before the next person came to record a day or so later. We were never really supposed to meet each other in person, though I saw Tess in the lobby as she was leaving and Rose and I had a drink one night at the bar where we sat at opposite ends of a table, which was very hard for both of us to do because she is a hugger too.

In closing, If you have CF and you ever get to meet me out and about, it's my top priority to be safe around you. It would absolutely break my heart if we got each other sick. I stay three feet away from you because I love you. Again: I'm not a germaphobe. I'm just taking care of myself. You would too if you lived my life and you've seen what I've seen.

Your best rule of thumb as a CFer is to use the "3 foot rule". If you choose not to follow that rule, please respect others who do and ask before giving that great big hug or firm handshake you want to give. Respecting boundaries is an important part of life, CF or not.

Check out my buddy Colleen's blog about cross contamination. She's much less wordy than I am. :-)

http://seeingsnowflakes.blogspot.com/2010/08/cross-contamination.html


Peaceful Things, Lots of Love, and "Safe Distancey" Things,

Josh & Moganko

Tuesday, August 10, 2010

Moganko's Summer Vacation & W2J Buttons

So....I do all of these Moganko episodes in my spare time. From concepts and brainstorming to shooting and editing, it's all for fun. I'll shoot a scene or two one day and then edit them while I do my treatments or while I have a moment to myself. I've been able to film them with very simple and low budget techniques that I've learned from my cousin Andy and from YouTube. It's become a lot more work than I ever anticipated...in a great way. I've had a lot of fun shooting these episodes and I'm happy that both kids and adults enjoy them.

That being said, I decided to take a break from Moganko for a little while this summer. I needed to take a step back and refocus my energy toward my personal life so that I could come back and use Moganko (and this blog) with a balanced and positive perspective.

Now I'm back filming episodes and (thanks to A LOT of happy volunteers) I've gotten into shooting more complex stuff. It'll take some time, but I'll be bringing you some new episodes very soon. Please be patient with me...it'll be worth the wait.

This latest Moganko short was a test shoot to see if I could create an episode using Chroma Key technology AKA Green Screen:

I had a little help from my seven year old buddy, Alex. He's always asking me to shoot things with Moganko, but because of the limited time we've had to hang out, we're never able to fit it in. Well, this time we made it work. I showed him all the ways that I create a video and we even made him a puppet. :-) Funny story about that:

At first Alex wanted to call him "Coxis", which sounded like coccyx - the tailbone part of your spine. Then he changed his mind and came up with - I KID YOU NOT! - "Snakey the One-Eyed Snake". The thought of either of those names on a kids-focused video was both unbearably funny and awkward all at once. After he stopped asking me why I was laughing at the name "One Eye", we finally settled on "Snakey The Chameleon Snake". Ahhh...to be innocent again.

The episode you are about to watch was a lot of fun to shoot. It was totally improvised and came from the mind of little boy with a great imagination. :-) Enjoy:



I'd like to do more episodes from the "Land of Whatnot" that will eventually tie into our CF adventures in the real world. More details on that idea to come, but for now I do have a request for your kids:

I need some more backgrounds for the "Land of Whatnot". If your kids (or you grown ups) are interested in creating a "Land of Whatnot" background, you can do so by taking a picture of or scanning in your drawings and posting them on my new Facebook Page:

Welcome to Joshland: The Blog & The YouTube Channel

I'll choose my favorite drawings to appear as backgrounds in a future episode, but I'll acknowledge all the contributions I receive! :-)

Joshland Note: I hated when I would enter a contest as a kid and my entry was ignored. No more I say!

The "Land of Whatnot" can be anything you imagine because that is what "Whatnot" is supposed to be. Here are the only rules:

- Crayon drawings on letter sized or legal sized pieces of paper. Keep the colors bright!

- Let me know the first name of the person who drew it so I can acknowledge them at the end of the video. :-)

Looking forward to seeing what you come up with!

FYI on a similar topic - W2J on YouTube has now has blog buttons that you can pull off of the page (I give you permission. :-) and use them to link to My YouTube channel! Click here for 3 different color choices:

http://www.welcometojoshland.com/p/w2j-on-youtube.html

Peaceful and Imaginary Things,

Josh

Tuesday, August 3, 2010

My Cousin's Straightforward Answer To A Complicated CF Question


I'm pleased to share another guest post with you. One of the questions I've been asked my whole life is "How did your extended family - especially the children - deal with all of your cystic fibrosis hulabaloo?" (Okay, maybe they didn't say hulabaloo, but you get what I mean.) Who better to ask than my cousin (and one of my closest family members) who grew up right along side Angie and I? Take it away, Molly Marie...

Have to be honest, when I got Josh’s email I was immediately overwhelmed. What he’s looking for seems pretty straightforward (to quote the man himself, “an unbiased, non-agenda pushing, humorous, honest, and real perspective on how our family dealt with CF appearing in our lives, Angie's legacy, and your honest opinion on whatever else you want to talk about). But it’s a little more complicated than that.

Full disclosure: I didn’t really “get” what cystic fibrosis was as a kid. I thought everyone had cousins who unloaded weird mask treatments, handfulls of pills at every meal, and contraptions that beat your chest and back so hard they’d cough their lungs out every time they came over to your house. Trying to have a conversation about well, anything, was pretty funny when the other side of the conversation sounded (and kind of looked) like Darth Vader.

My brother and I would try on Angie and Josh’s therapy vest— this life jacket-esque inflated and shook so hard that eventually your chest, arms and neck started to go numb, and then eventually began to itch. I remember visiting Angie in the hospital and taking rides through the hallways on her IV stand. Now as an adult, I know that none of this was actually fun. This was ongoing, frustrating, often painful treatment. But rare were the times a complaint was heard, and I think that says a lot about Angie and Josh. They always had a smile on their face, never letting on to their two younger cousins that they were sick. We were just ordinary kids, doing regular stuff.

One day, I was shopping with my mom at Maplewood Mall. We were perusing the hosiery aisle at Carson Pier Scott when I started asking my mom some pressing questions. Why did all my aunts always take Angie shopping? Why did Grandma buy her the awesome Hyper Color t-shirt? Why does everyone treat Angie different than me? Angie was like the big sister I never had, and I suppose like sisters get, I was a little jealous of all the attention. My mother explained, matter-of-factly, that Angie was sick. Very sick, the prognosis was not good, and, in all likelihood, she didn’t have much time left with us. I understood. I was nine.

I remember Angie’s last few days. My parents brought my brother and I to the hospital every night. Even then, she always had something funny to say (talk about finally getting to have big boobs in Heaven still makes me laugh). I remember the last hug she gave me, the last time we said I love you, and I remember two days later when her little brother whispered in my ear, “She’s gone.”

It’s 17 years later, and I still think of Angie all the time. Whenever I hear the song, Get Out of My Dreams (Get into My Car), I think of us riding around in Grandpa’s Ford Galaxy with Unkie Bri-Bri filming our flirtatious giggles. I had her bedroom set until I graduated from high school (I wish I could still have a waterbed). I still have the copy of Shel Silverstein’s Where the Sidewalk Ends she and Josh gave me for my birthday. Angie inscribed it, signing her name in bubbly cursive letters, all of the i’s dotted with hearts and smiley faces. I remember thinking how totally cool her penmanship was, and failed miserably in my attempt to recreate her signature. I signed “Angela Nicole” three or four times, right there on the same page. It never looked quite right, and I hid the book from my parents because I thought I’d get in trouble for writing in it. And just four days ago, while cleaning at the cabin, WJJY played her favorite song, River of Dreams. I feel like that song was intended for her, and for everyone she left behind. I think I can speak for much of our family in that it eased a situation we weren’t ready to face. Every time I hear it, I have a different reaction. Sometimes tears, sometimes just a smile. If I’m with someone, I always tell them about her.

Angie, Josh, my brother and myself always had a special bond. Angie and I, the know-it-all, big sisters who liked to gossip and wear matching outfits. Josh and Andy, the goofy, wrestlin’, video game playin’ little brothers who wore sweat suits and imitated the Bushwackers. We girls were constantly annoyed with those boys, yet always managed to have fun.


Josh, I know she is so proud of you and everything you’re doing. You bring genuine love and laughter to kids, parents, cousins and friends who need it. Finding humor in a crummy situation sometimes seems inappropriate, but it’s when you can’t muster a laugh or crack a joke that hope is lost. That’s the great thing about laughing—even if it’s for just a moment—it makes everything else in the world disappear.

Joshland Note: Thank you for this post, Molly. I know this must have been hard for you to write, but what you just shared will be so helpful to the people who read this little blog. Being the writer that you are, you know the power of words and the magnitude of emotions they can bring. That's a special gift that not everyone is able to use.

The four of us were and always will be very close. Angie is always watching over you and I can tell you for damn sure that she loves your wit and charm. She loves the way you live your life and the ease in which you take on even the largest tasks. And that is why she loves you, that's just one of the many reasons I love you, and that is why "I kicked your leg out of your leg!"

(Sorry readers, that last line was an inside "wrestling nerd" joke. Only a select few have the privilege of "getting it".)


FYI - Check out Molly's blog on AndrewZimmern.com. She is Andrew's mediamonger and the editor of his website.

Andrew Zimmern is the co-creator, host and contributing producer of Travel Channel's hit series, Bizarre Foods with Andrew Zimmern and Andrew Zimmern's Bizarre World. He travels the world, exploring the food in its own terroir, wherever it's found. From restaurants to jungle markets, it's all about discovering the authentic experience.

http://www.andrewzimmern.com/blog/molly

Peaceful Things,

Josh & Molly

What'd You Think?

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Peaceful Things ~ Josh
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