Saturday, August 27, 2011

My Fondest "Dad Story"...

Tuesday, 8/30/2011 - It is with a heavy, yet thankful heart that I let you all know my father passed away last night. After a VERY rough day, we were able to make him comfortable in his final hours. It was quite beautiful and peaceful, just as he wanted. He did not lose his battle to cancer. Everyone who lives each day against all odds will NEVER lose their fight against any evil. I love you, Pop. Say hi to everyone for me...especially Angie.

My family recently had an "anointing of the sick" for my father who is walking the path of terminal cancer. For those who aren't catholic or particularly religious, here is a synopsis of the sacrament:

"The anointing of the sick is administered to bring spiritual and even physical strength during an illness, especially near the time of death. It is most likely one of the last sacraments one will receive. A sacrament is an outward sign established by Jesus Christ to confer inward grace. In more basic terms, it is a rite that is performed to convey God’s grace to the recipient, through the power of the Holy Spirit."

I watched as my family placed their hands on him. I saw tears and trembling lips. I heard heavy sighs and nervous chuckles, but I never heard a word of that blessing that came out of the priest's mouth. Don't get me wrong...I felt the positivity and love in the room, but I was deep in my own world dwelling on my fondest memory with my father.
It's been very hard to think about (let alone write about) our time together without stirring up a lot of pent up emotions. Since he was diagnosed I've been trying to find a story that would best sum up our relationship. No matter what thoughts I came up with, my words would spiral out of control. That is until I thought of this particular story:

..........

My father picked me up early on a cold Saturday morning in 1994 to work at the Christmas tree farm our family owned just outside the metro area. I was excited because it was an opportunity to make a few bucks for Christmas shopping, but I was also leery because it was the first time in a long time (maybe since my sister passed away a year earlier) I was going to be alone with my Dad. This wasn't just a ball game or a movie. This was hours upon hours with a man I had little in common with. All I ever wanted was for him to be proud of me and—though I don't know if I was aware of it at the time—this was my opportunity to show him I could be a hard worker. I could be a man. At least...I could try.

We drove in unbearable silence, broken only by my father's inquires and sighs. The tension was so thick you could cut it with a hacksaw. I didn't have the answers to the questions he asked. Even if I did, I knew he wouldn't have liked whatever answer I gave him. He groaned and looked down at his half a pack of Marlboros, then tucked them deep into his overalls. He never smoked near me. Never...even when he was stressed to the hilt. He bit his lip and countered his cravings with a swig of diet soda. I was tempted to give him the okay to smoke a carton if it would start our day off on a good note, but instead I looked out the passenger's window and silently counted down the seconds until we're headed home. Not a good sign at 8:00 AM.

When we got to the tree farm, the doors of the Pontiac Riviera burst open from the pressure of our silence. There were several men my father's age running around the farm. All of them dressed in flannel shirts, orange stocking caps, overalls and dirt brown, worn down snow boots that had seen several holiday seasons come and go. I looked severely out of place in my neon colored nylon ski jacket and dark blue snow pants. The only similarity between us were my boots that were two sizes to big. I had to wear two pairs of wool socks to make up the difference.

The snow wasn't too deep, but it was deep enough to slow my snow waddle down to a pitiful crawl. I was so embarrassed I couldn't even look at my dad. I only imagined the look he gave to the rest of the guys and the possible tinge of regret he might have had bringing me with that day. In an insanely stupid move to prove myself, I decided to be on tree shaking detail. You see, after families came back with their tree in tow, I was supposed to pick it up and place it in the shaker that rustled the snow and loose pine needles from a freshly cut "ornament hanger". It was a short lived assignment because—as strong as I was—the combination of over-sized boots, slippery terrain and my case of spastic diplegia sent me falling flat on my face and nearly smashing my head on the metal shaker. I was red from the combination of snow and embarrassment. My cheeks were wet from sweat and tears. I didn't want to get up and was ready to stay there forever with my head buried in the snow like a newly discovered species of winter ostrich, when all of the sudden I was hoisted up by my armpits by my father. He smiled, gave me a one armed hug and said with sincerity:

"Nice try, bud. You almost made it. Why don't you head over and help tie the trees on the cars and collect the money."

I was shocked. I expected to receive the normal avalanche of teasing that was never meant to be mean-spirited, but sometimes went too far and broke my heart. Not this time. Maybe he saw how embarrassed I was or perhaps he knew how sensitive I had become after Angie died. Whatever the case, he never even smirked in my direction. Another rush of relief passed through my body as I headed over to metal cash box to get some change for my new collections assignment.

From that point on, Dad and I were actually having a good time together. I remember telling knock-knock jokes and throwing snowballs at one another while moving tree after tree off the lot. The wind was bitter cold on my cheeks, ripping into my skin with every gust, but I didn't complain. Things were going so well I didn't want to screw it up. I collected money from many happy families taking their perfect "Grizwold Family Christmas Tree" home to decorate together. I can't speak for my father, but it made me happy knowing that people would be spending time together creating family traditions, even if it was harder for us to do the same.

As the sun set in the golden purple sky, I wiped the snot from my nose and took my boots off inside the car. I couldn't see my dad...just the blurry figure beside me thanks to my fogged up lenses. I took them off to defrost by the window when I heard my father say:

"Good job, bud. You worked hard today."

"Thanks, Pop. I tried." I replied trying to hold back my tears and biting my quivering lip.

Dad put the car in drive and slid a cassette of Johnny Horton: The Battle of New Orleans into the tape deck. "Comanche the Brave Horse", "Rock Island Line", "Sink the Bismark" and "North to Alaska" blared on the stereo while we howled our predetermined verses at the top of our lungs and continued the chorus in harmony. The closer we came to home, the louder we sang. We wanted to hold on to that day for as long as we could.

W
hen the music ended, so did the state of euphoria. I stood in my driveway and smiled at my father as he backed out of the drive way, speeding up the hill and out of site. We were instantly back to reality and the struggle of being a father and son that never quite got on track.



Regardless of where my father and I have been, where we are now or where we are going, I'll never forget the day I knew that my dad was proud of me...and that my dad IS proud of me. I'll cherish that memory for the rest of my life.

...........


When the anointing was finished, I could sense the relief in the room. An aura of peace that only happens when we open ourselves up to it. That's why I appreciate when people ask me if they may pray for me. Of course you may! I'll take any form of love and positivity sent my way because regardless of what kind of prayer or well wishes you want to send, I know your gestures are ALWAYS sent with pure intentions. I send them back to you every time
I sign off "Peaceful Things" on a Joshland blog post. I believe that phrase transcends all facets of faith and goodwill because as I've said many times before: I do my best to love and accept everyone regardless of our differences.

It's in this spirit that I ask you to please send peaceful and healing thoughts to those who are struggling right now. Bring them the strength to live each day the best they can and continue to prove the world wrong. Peaceful things and lots of healing love to everyone...especially to my Pop. I love you, Pop...very, very much.

Love,

Josh

Monday, August 22, 2011

Moganko & Josh VS. Emily in "DRUM WARS" & The Story Behind It

Joshland Note: This is a long post with several videos, so find a chunk of time where you can really sit and absorb it. It'll be worth it, I promise!

When I started making these episodes, I wanted to pay tribute as best I could to the essence of "The Muppet Show"by putting my own CF-spin on them. I hoped they would inspire your children to take care of themselves and motivate the general public to research different aspects of cystic fibrosis on their own. This episode does all of those things and I'm so pumped to share it with you. But first, the inspiration and the back story...

Posted below are segments from two of the original "Muppet Show"episodes that gave me the idea for my newest Moganko adventure:

(These are videos from other people's YouTube accounts and are property of Disney/MuppetStudios who now own the creative genius of Jim Henson and his fellow Muppeteers)

Animal VS. Buddy Rich



Animal VS. Harry Belafonte



They speak for themselves, don't they?

W2J's "DRUM WARS"—featuring Emily Schaller from the Rock CF Foundation—highlights one of the original way airway clearance therapies ever used to help people with cystic fibrosis. It's called manual chest physiotherapy, AKA CPT. Without getting too technical, CPT is a form of therapy where a respiratory therapist (RT) or caregiver places a CF patient in several different positions on a large table. From there , the RT/caregiver pounds on different areas of the patient's chest for several minutes at a time to loosen mucus from their lungs so they can cough it out. While I don't use this type as much anymore (which must be disappointing to my wife because I know there are days she'd love to have permission to pound on me...hee hee), I know many people who use manual CPT as a effective form of airway clearance. Here's a link to explain what CPT is in greater detail:

http://www.uwhealth.org/uw-cystic-fibrosis-center/cystic-fibrosis-cf-treatment-manual-chest-physiotherapy/13791

I have lots of childhood memories of both my parents and other loved ones pounding on me while we listened to music to pass the time during treatment. Every so often they'd pound to the beat and do a mini drum solo to make me laugh and enjoy what was otherwise a pain in butt to tolerate as a little kid.

And then the idea popped into my head: What about a drum battle between a drummer and caregiver/happy pounder Moganko using me as his "drum"?!?! But who would be the real drummer? I'm friends with several drummers and even though I know they'd be up for helping me, I wanted someone with a connection to CF that would believe in what I was trying to do. Enter CFer Emily Schaller. When I started reconnecting with the CF Community a few years ago, she was one of the first faces to cross my path. I saw how involved she was in numerous CF awareness projects and fundraising events including playing drums at a CF benefit in her home town of Detroit. We eventually connected through our mutual friend—Rose from the Breathe Song Event—and a distant friendship was born.

When I explained what I wanted to do, Emily was on board without hesitation. She understood the concept and was open to all of my ideas. Most importantly, she wasn't afraid to be silly because she understood what this was all for...YOUR CF CHILDREN and CF Awareness. Like me, Em has an affinity for kids and wants to help them see a bright light in the often dark world of cystic fibrosis. It took almost a years worth of emails, conversations, snail mail and file sharing (oh my god, the file sharing...ugh...Em you are a saint. I'd have quit after a week. :-) to get her part in place, but damn it...we did it! Thank you for believing in me, Emily! I'm grateful for your humility and friendship. Click on this link to learn more about this wonderful woman:

http://www.letsrockcf.org/

But there's even more to this story...

I had to shoot Moganko performing CPT on me for the video, but I had no idea how I was going to do that...until my mother, Christine, and her husband "Big D" volunteered to puppeteer Moganko for this episode. They helped me set up lighting for the green screen, they hid behind the table and moved Moganko's arms...they did everything I asked of them and beyond. Shooting these episodes is NEVER easy, but they never complained. Why? Because they love me and believe in what I'm doing. Mom and "Big D"...I love you both too!

Last, but certainly not least... lots of love goes out to my wife who spent many hours this weekend being my "creative consultant" and putting the finishing touches on this episode. From the creating green screen backgrounds to moments of puppeteering, my wife was simply amazing. She does it because she knows it makes me happy and consequently makes all of you happy too. Carly, you are my sunshine and I love you more every day.

My final thoughts: After six months of being so sick I wasn't able to do any Moganko stuff, "DRUM WARS" was so important for me to finish...especially since we're hot off the heels of the FOX 9 news report last week. I'm proud of the work I did here and I can see things improving with each episode. Is this episode perfect? No. However, where it lacks perfection it exudes passion. I gave it my all. I love what I do and I love your kids...so does every person who has ever helped me shoot an episode of this silly little Youtube show.

So...after damn near a year of work...I proudly present to you..."DRUM WARS"!





Peaceful things and lots of love,

The "DRUM WARS" Crew

Wednesday, August 17, 2011

Moganko's FOX 9 News Debut!

Everything happens for a reason. I don't know why it does, but I believe it JUST DOES.

Before I go any further, it's important that I mention my friend and high school classmate, Amy, who was the main reason this story even happened in the first place. She is remarkable in her own right and if you take a moment to click on this link you'll see why:

Woman Conceives Despite Brain Injury

Amy talked me up to FOX 9 reporter Scott Wasserman—the reporter who told her story—and encouraged him to contact me for a future segment. After a few phone conversations, Scott the Reporter, Tim the Camera Man and Josh the "Puppeteer" ( I use that term loosely) ended up filming on Monday morning. Together we created a great story I am proud to share with you. Take a look:

Maplewood Puppeteer Cheers Children with Cystic Fibrosis: MyFoxTWINCITIES.com

I loved this story. Not because I was on the news or because people sang my praises, but because it made me feel like what I'm doing matters. Not just to the CF Community, but to people who have very little knowledge of what CF is and what it does. That is the entire point of Moganko and the essence of the "Moganko CF Project". That puppet teaches children about CF, facilitates conversations between CF patients and their loved ones and provides CF awareness to general public in a unique way. Guess what else? You were all there with me. Every person who had ever read this blog or watched my videos was sitting beside me on that couch Monday morning. You make me the man I am and this whole thing couldn't have happened without you. Period.

If the past 24 hours is any indication of the kind of support I've got behind me for the "Moganko CF Project", then I know I'll have nothing to worry about when I finally finish our long awaited "masterpiece". Thank you to Scott Wasserman and FOX 9 News for spending your valuable time sharing our story with Minnesota and the world. To all the people that found my blog because of it: Welcome to Joshland. Stay tuned and get ready because the little orange dude and I are just getting started.

Update: As of 4:45 PM on 8/17/2011, my story has 1000+ Facebook recommendations! I sent an email to Scott Wasserman and asked him if that was a good number. His reply: "100 is a good number and the most I've ever recalled having was 1,000, so, yeah, I'd say people liked it." :-) You, my Facebook friends, are A-FREAKING- MAZING! I love you all very much. I promise I won't let you down!

Peaceful things and lots of love,

Josh

Tuesday, August 2, 2011

Piper's "Blogger Challenge"

This blog is my participation in Piper Beatty's "Blogger Challenge" which you can read about at the bottom of this blog post. Here it goes....

There is a scene in Jurassic Park where Dr. Hammond and Dr. Sattler are sitting around a dining room table eating ice cream. Why are they eating ice cream, you ask? Well, because the world has gone to hell in a hand basket. The power has been shut down allowing the carnivorous dinosaurs to escape their enclosures and turning all of their loved ones trapped in the park into dino-snacks.

Despite the peril they are in, Dr. Hammond is still trying to convince himself that he can regain control of the park and the unknown dangers within...

John Hammond
:Now, the next time everything's correctable. Creation is an act of sheer will. Next time it'll be flawless.

Ellie Sattler
: It's still the flea circus. It's all an illusion.

John Hammond
: When we have control again –

Ellie Sattler: You never had control! That's the illusion! I was overwhelmed by the power of this place. But I made a mistake, too. I didn't have enough respect for that power and it's out now. The only thing that matters now are the people we love. Alan and Lex and Tim … John, they're out there where people are dying.

I must have watched that movie nearly a hundred times, but until recently I never realized how much this relates to cystic fibrosis. Control implies a sense of certainty. A complete and utter belief that we can predict what's coming and know EXACTLY how to handle it every single time. And THAT is our illusion. No matter how prepared we are, no matter how type A our personalities may be, there will be times with CF will knock us on our asses leaving us confused and wondering where to go next. Do I think CF is a controllable disease? No.

I can see the expressions on your faces. Pale as a hospital bed sheet, you're thinking: "Holy hannabarberra! Josh has given up, waved the white flag, cashed in his chips, pulled the fire alarm, abandoned ship! " To that I say, NAY, my good friends. I'm just being honest because if there is one thing I've learned in my 32 years living with CF, it's that the only thing for certain about this disease is uncertainty.

That being said, I do believe this disease is MANAGEABLE. How? By being compliant. Doing therapies, taking our meds, going to doctor's appointments, being active in some way. These are the tools we use to slow progression and to aide us in our quest for a "normal life".

But there is that word...compliance. Man, I wish I had the actual definition of compliance handy to share with you, my dear readers. Oh wait.....I DO! MMMWWWWWWAAHAAAHHH! (as I rub my hands together in a villainous "I-fooled-you" manner.)

Definition of COMPLIANCE

1
a : the act or process of complying to a desire, demand, proposal, or regimen or to coercion b : conformity in fulfilling official requirements
2
: a disposition to yield to others

I know this is not literally what our healthcare team (i.e. doctors, nurses, social workers, and to a larger extent our family and friends) wants us to do...but doesn't it feel like that sometimes? There are times when I think my healthcare team wants to leave a trail of Reese's peanut butter cups from my house all the way to a hospital room. Then, the moment I walk in room they slam the door and refuse to let me out until I agree to do IVs or some other form of sadomasochism.

When it comes to my healthcare, I do not have a disposition to yield to others. If I did everything my doctors ever told me to do, I would never leave my house. I would be on a strict regimen of treatments, medicine, drug studies and nothing else could get in the way. When I was a kid, sometimes my doctors made me feel like they were the "fun police". I can't blame them. My doctors became family. Sometimes a family is overprotective. I think that is one reason I went through my rebellious phase as a teenager. I was definitely a "screw compliance and screw CF" guy for a while. I figured what's the point if I was going to die young like my sister anyways? I skipped treatments, I lied about taking meds, and I did things that have had very negative and lasting consequences on my body. I was tired of being told what to do. I wanted to believe I was invincible. Oh, how foolish I was.

As an adult, I found that middle ground and the true definition of CF compliance:

Definition of CF COMPLIANCE

1. A combination of quality of life and healthcare management.

I feel a responsibility to take care of myself, but I know whether or not I can miss that treatment ONE TIME to hang out with friends. I'm brave enough to stand up for myself in the doctor's office while being open to opinions I might not want to hear. I may not have complete control of my CF life, but I certainly have control over how I handle it.

On a final note...

I want the guilt in our community to go away. I don't want people who are labeled "healthy CF patients" to feel bad for being that way and I don't want people to be angry and judgmental towards others for being healthy. They didn't choose to be healthy to spite you. Be happy for them. Cheer them on. Love them because they are living the dream every day just like you would if roles were reversed. I also don't want people who are really sick to feel guilty when they read, hear about, or see others running marathons or working 50 hours a week. As long as you are doing the best you can, that is all that matters. CF is an individual disease. The only similarities we really have are in our symptoms and the labels we are given (CFer, Fibro, Cyster, etc...). The severity of those symptoms and the way they manifest in our bodies are different. You don't believe me? Read about my sister. We had the same parents. The same mutation. The same environment. TOTALLY. DIFFERENT. DISEASE.

Most of all, I want the fear of the unknown to disappear from the CF Community. I don't want CF to hold you back, but I want you to know your limits. The only way you know those limits are if you TRY THINGS and LIVE LIFE. Have dreams, for heaven's sake. Will all of your dreams come true? Probably not, but as I've said before, I'd rather try and fail than fail to try. Life is too short to not live, try and dream.

Peaceful Things,

Josh

How to participate in the "Blogger Challenge":

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

What'd You Think?

One of my favorite things about my blog are the comments I receive on my posts. I am so thankful that you take the time to write them. I may not respond personally to everyone, but make no mistake...I read every single one.

If you'd like to leave a comment, but don't have an account that's listed in the drop down menu, choose the "Name/Url Anonymous" options. Then write your comment, fill in the word verification and click "Post Comment". I will receive an email and post your comment once I've approved it. :-)

Peaceful Things ~ Josh
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