Thursday, October 31, 2013

Joshland Unfiltered Podcast: Episode 7 - CF In The Workplace



This episode of the JUP is one that most "normies" can relate to. Dealing with an short-term or long term illness while holding down a job is something almost everyone has had experience with. Whether you know of a co-worker on an extended leave of absence or perhaps you've had your own challenge to work through, it's something that resonates with the masses.

The difference here is that with CF—or any chronic illness—the issue never fully goes away. It is an every day occurrence to juggle your health routine with your work life and it rarely comes without sacrifice.

Matt and Leah really went out on a limb and shared a lot of personal stuff about their time in the workforce, including their choices of college majors and how that impacted their future, how they balance their work schedule with their real life responsibilities and we graze the surface on the very broad topic of how much sharing of our life with CF is too much. That last topic is a whole other podcast unto itself.

I personally struggled with the responsibility and commitment to my career. Particularly how hard I would push myself to maintain my job and what it cost me in the long run...how much it would shorten my time on this earth. We also talked about how stubborn people with CF are and how we push ourselves beyond our limits because we don't want to be treated any differently...even though in the long run, we often are. Unless we have an amazing boss and co-workers. If you get that gig, more power to you!

Tim and I are so thankful to have Leah and Matt on the podcast and really share so much of themselves for the greater good of the CF Community.

Enjoy the listen and let me know your thoughts!

JUP on iTunes:

https://itunes.apple.com/us/podcast/joshland-unfiltered/id567358131

Podcast Player on the JUP Fanpage:

https://www.facebook.com/JoshlandPodcast/app_282096688512542

Peaceful Things and Stay Positive,

Josh and Tim

Thursday, October 10, 2013

Finding Humor in Struggle

Joshland Note - There will be a lot of tangents, to-do lists and requests that will require an abundance of your time and energy to make it through this blog post. Do what you must to prepare for this undertaking so you can fully absorb my thought process. 

I normally avoid this kind of gossip column trash-talking that's promoted for website traffic and publicity, but this article from OMG! Yahoo stirred up a little fire in my belly:
...
Rex Reed is refusing to back down in his ongoing feud with actress Melissa McCarthy. The New York Observer film critic, who penned a scathing review [where he refers to McCarthy as "tractor-sized, a "female hippo," and a "screeching, humongous creep"] of her role in No. 1 comedy Identity Thief earlier this year, is standing by his offensive statements, he tells Us Weekly.
"I can only repeat what I have said before -- that I do not have, nor have I ever had, anything personal against people who suffer from obesity," he wrote to Us in an email. "What I object to is the disgusting attempt to pretend obesity is funny. It is not remotely humorous, and every obese comedian who ever made jokes about the disease are now dead from strokes, heart disease, high blood pressure, and diabetes. As a critic whose opinions are constitutionally protected by law, I stand by all of my original remarks about Melissa McCarthy's obesity, which I consider about as amusing as cancer, and apologize for nothing."
...
While Rex Reed is well within his rights to say what he wants (YAY! Freedom of speech in 'Murica!), that means it's within my right to call him a smug, pretentious and mean-spirited ass who has no business waging a personal attack on Melissa McCarthy or her physical appearance. His "job" is to critique the movie and the performance of the actors. If the movie is terrible or she does a crappy job, then say that and only that because the harsh critique on her physical appearance has nothing to do with her chops as an actor. Now that I've got that off my chest, let's look at this particular part of his comment:

"...every obese comedian who ever made jokes about the disease are now dead from strokes, heart disease, high blood pressure, and diabetes."

There are two things that Mr. Reed has completely lost sight of:

1. Self-deprecating humor is often a HUGE part of surviving the most unenviable circumstances. It's called a coping mechanism. 

I have no idea if Melissa McCarthy's comedy comes from personal insecurities about her weight. Based on the quotes I've read from her, she seems VERY secure with who she is. 
BUT...even if she has those insecurities and chooses to play them up in her comedic roles, that's her prerogative BECAUSE...

2. The essence of comedy comes from living through or observing a part of human existence—be it tragic, triumphant or quirky—and then nit-picking it down to the smallest detail until you find a morsel of humor that's relatable to an audience. It's an absolute given that not everyone will think something is funny because comedy and entertainment are subjective things. Here's the solution: If you don't like it, then don't watch it. That's the greatest statement you can make against something you dislike. Don't give it any publicity.

I talked about the above in order to seamlessly segue back into the subject of self-deprecating humor. People have asked me how I've survived all the hardship in my life. While there are a number of things that have helped me—a great support system, tolerance and acceptance of others and allowing myself to feel all my emotions when I need to—the greatest thing I've ever done to cope is maintain my sense of humor.

At this time, I must request that you do a multitude of things for me:

• Read these quotes:

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.”

~ Bill Cosby

"I intend to live forever, or die trying." ~ Groucho Marx

•  Listen to act one of last October's "This American Life" episode entitled  'What Doesn't Kill You Makes You Stronger', where comedian Tig Notaro copes with her cancer diagnosis— and a host of other tragic  life events within the span of 4 months—by doing a stand up show eight days after her diagnosis. 

Joshland Note -  It's 13 minutes long and it's worth every minute of it, especially if you're going to understand the rest of this blog post. A lot of the humor is appropriately dark, so be prepared for that before you listen.

 • Watch her absurdly brilliant and much lighter appearance on Conan O'Brien:



• Download and listen to her funny and honest hour long conversation on the Nerdist Podcast during your commute to and from work. She really gets into some intimate and wonderful details about the importance of carrying on and having a great support system. (Some swearing and sexual/crude humor. Not safe for work.)

• Read this hilarious article from comedy publisher "The Onion" and tell me this isn't a genius interpretation of Mad Libs for any one who has dealt with a chronic illness or tragedy.

"Man Dies After Secret 4-Year Battle With Gorilla"

• I—like so many other people on our planet—have lost people I love to so many monstrously horrible things...Cancer, cystic fibrosis, car accidents, heart disease, etc...and yet, I can still find humor in sadness. Examples:

Days before my sister died, she was talking to some visitors and the conversation somehow turned to heaven, the afterlife and death...to which she said (and I'm paraphrasing here because I was not in the room for this moment and it's one of the biggest regrets of my life and I trust my sources):

"When I get to heaven, I want to be six feet tall with huge boobs like Marilyn Monroe."

Hilarious! Love my sister! 

• When I die, there will be a point when one or several of my friends will say an interpretation of this classic line from the Princess Bride:




"(Well, Josh is )All dead...and ,well, with all dead there's only one thing to do...go through his pockets and look for loose change."

People will probably be offended, but I'll be laughing my ass off...hopefully from heaven. I hope you do to because if you cannot find humor in struggle, then my heart is broken for you. 

I hope you all find that laughter that I believe we all desperately need.

Peaceful and Humorous Things,

Josh

Thursday, September 26, 2013

30 REAL Seconds To Examine Expectations

Go ahead...imagine how long 30 seconds is. Count it out in your head if you want to.

Now...push play on this video and wait in silence until it finishes or set a timer for 30 seconds.


If you're anything like me, imagining how long 30 seconds will take and physically feeling and embracing how long 30 seconds actually takes are two very different things. Feeling 30 seconds takes A LOT longer than I imagined it would my head.

Over the past few months I've come to realize are my expectations of time, energy and skill are COMPLETELY UNREALISTIC. As unrealistic as Malcolm Gladwell's theory that 10,000 hours of legitimate practice will make you an expert at anything you attempt to do. The truth is that there are so many variables that factor into what we do and who we are that it's nearly impossible to know how long it will take someone to become an expert at something, let alone discover if they even HAVE the ability to reach that expert level people so often covet, but seldom reach. I mean, think about this...If every person in the world reached every lofty goal and aspiration they set for themselves, then there would be a lot more than just 1% of the population who would reach the "wealthy and elite" standard of living or who would become the professional athlete so many pretended to be in their backyard as a child.

My personal struggle with expectations comes from the anxiety of underperforming a task or activity that I believe I should be good at.  I'm afraid that even if I put forth my best effort, I'll still be disappointed in my final result. From complex and time-consuming long term goals like learning to play an instrument, performing in an improv comedy class or editing videos with a brand new software to simple—borderline menial—tasks or chores like keeping on a daily schedule, planting and watering grass seed or planning a date with my wife...the anxiety is there. I have no patience with myself, yet, I don't believe I have a fear of failure. In my mind, fear of failure is when you choose to not attempt something because you're convinced you won't be good at it. I'd like to think that I've grown past that issue because of the challenges I've faced growing up with cystic fibrosis and cerebral palsy. As I've mentioned time and time again on this blog, I've failed at a lot of things and I don't lose any sleep over those failures because I figure they're all part of learning my strengths and weaknesses. If I ever choose not to do something, it would be because I didn't enjoy doing it the first few times I tried it.

No, the constant mistake I make when setting my expectations is forgetting to factor in MY variables. I forget that because of my life with cerebral palsy, cystic fibrosis and the other physical and mental skills I've been given or have been taken from me, the way I learn and function in the real world happens at a slower pace than what's expected of me by the rest of society. I'm just coming to grips with the fact that I ALWAYS get where everyone else is, but it's always going to take a bit longer for me get there. It's been a huge relief to finally accept this truth about who I am. It's allowed me to not only try new things, but actually enjoy the process of trying new things rather than fret about it. To grow as a person with many intricate roles: A husband, son, godfather, friend, family member and role model.

And that got me to wondering...In a world where we're always looking for the bigger, better, faster and stronger way to do something, what could we accomplish if we just slowed down and took in every moment? What could we do if we took the time to learn about things at an individual pace where we could absorb what we're learning on a deeper and fuller level without the expectations or pressures of becoming an expert at something?  What could we understand and learn about ourselves and the world if we actually took REAL time to think about things before we did them?

I challenge you to take 30 REAL seconds or more and think about that. Don't forget that there's a video up above so you don't cheat yourself out of a few precious seconds. They could be the difference between learning something and losing it. 

Trust me. I know from experience.

Peaceful and Steadily Paced Things,

Josh

Wednesday, September 18, 2013

"Cystic Fibrosis Awareness In 10 Minutes Or Less" - A Spoken Word Piece

Whenever I'm asked to be a keynote speaker at any event, it's my responsibility and honor to represent thousands of people living with cystic fibrosis through unique presentations and performances that leave their mark on the every person in the audience. You see, I'm not just sharing my story...I'm sharing OUR story. The 70,000+ members of the CF Community are on stage with me for every word and every moment. They make me stronger and I appreciate their gift to me.

Such was the case when I performed this spoken word piece in New York City at a fundraising event for the Christopher Ricardo Cystic Fibrosis Foundation back in April of 2013. This was the first and (as of this posting) the only time I've ever performed it in front of anyone. As a matter of fact, this is the first and only time I've ever written and performed a spoken word piece in my life. It wasn't a flawless performance, but it was honest, raw and from the heart. At the end of the day, that's all that really matters. If you speak with passion, the rest takes care of itself.

I hope you enjoy my words and that they inspire you to help our community achieve the greatness we work so hard for every single day.



Peaceful Things,

Josh

Thursday, August 29, 2013

One Lunch A Year For The Rest Of My Life

I could see the people behind him in line shaking their heads in disgust as they looked at this young man...we'll call him "Shawn". From the tattoos that covered seemingly every inch of his exposed skin and the ones the peeked out from beneath his plaid shirt to the piercings on his eyebrows, ears and lip, Shawn stuck out like a sore thumb in the middle of this stereotypical "Leave it to Beaver" suburban town.

The patron's brows were wrinkled as they whispered to one another, clearly passing judgement on not only Shawn's physical appearance, but also his companion. 

"Dad...Dad...Dad...DAAAAAAAAAD?!?!" the little guy squealed.

"What? You're driving me nuts!" Shawn said with a smile.

"Can I have a cookie?" the little boy said with a huge smile in return.

"No. Your mom would kill me because you didn't eat your yogurt like you promised her."

The boy pouted for just a moment and then began to hang on his Dad's tattoo covered forearm, wrapping it around his body while he outlined each speck of ink with his tiny finger, perhaps picturing the day when he could getting a matching tattoo just like the man he so clearly idolized. The man that everyone else in line was condemning because he wasn't what they perceived a "good father" to be. That he was setting a terrible physical example of who and what a man should be to his son.

I was pulled out of my inner rage when the sandwich artist asked me:

"Sir, your sandwich is ready. Will that complete your order?" 

"Actually, I'd like to pay for this gentleman's order as well. And give the kid a cookie, so long as he finishes his yogurt when he gets home." I declared as I smirked at the little boy whose eyes lit up with delight.

Shawn tried to graciously decline my gesture, but I refused to listen. As the sandwich artist rang up the order—complete with a giant M&M cookie— I explained that my father passed away almost two years ago to the day and it was really nice to see a dad and his son love each other so openly and honestly. That since I can't buy my dad lunch anymore, it would be an honor if he would let me buy him and his son lunch today.

Shawn squeezed his son and stuck out his hand in gratitude. As our hands locked together, I could feel his hand trembling. We didn't say another word to each other, but I looked down at his son and said:

"Do me a favor, kid. Go home and eat your yogurt, have a great year at school and take care of your dad for me, okay?"

His son smiled and nodded, scampering out the door with a mouth full of cookie and a lot of questions for his dad to answer on the car ride home.

It felt so good to do that for them that I've decided I'm going to do it every year on or near the anniversary of my dad's passing. To those people in line who were silently judging Shawn: I want you to remember that almost any man can have a child, but not every man can or wants to be a good father. How about we cut some friggin' slack to the one's who are trying to be even if you don't like the way they choose to do it, huh?! Shawn clearly loves his son. Every son should be so lucky and I hope if I ever choose to be a dad I'll be like Shawn. Oh, and I hope they get those matching tattoos someday. :-)

Miss you, Pop. I wish we could've been a little better to each other. Say hi to Angie for me.

Peaceful Things, 

Josh

Friday, July 12, 2013

Fanning the Flames of Stupidity

"Do YOU know what could've happened, Josh?" the firefighter blurted out, his low voice reverberating in my head like a heavy bass line in a Motown classic.

The words sent my head spinning. Did I really know what could've happened? I suppose I didn't, which was a rarity for me.

 I wasn't a rule breaker or a trouble maker when I was a kid. More than anything, I was a worrier and a bit of a baby. For some reason, I would immediately confess my wrongdoings the as soon as they happened. I told my mom about the teddy bear incident minutes after it happened, I apologized to the gas station clerk and tried to pay for the items when I found out my friends had been stealing candy from his place (without ratting them out...I wasn't a tattletale). Even now as a grown adult, I follow the rules a little too much. I went back to the grocery store two weeks later when saw the receipt I realized a few of my groceries never rang up at the register. I even brought the receipt back for proof and I'm pretty sure the checkout attendant thought I was an idiot. Call it a case of catholic guilt mixed in with a bit of goody two shoes, but I don't like to feel that heavy burden on my shoulders. A rebel, I am not.

Yet, that natural reaction of burden was blocked from my brain as I sat in the pitch dark confines of my closet. Through the warm glow of a tiny flame, I could see the pile of burnt matches laying in front of me. The smell of sulfur and smoke filled the air and embedded into my clothes. The flame consumed the charred wick of my poorly made Cub Scout Christmas candle I found among the random array of childhood projects stored in our basement. I was enthralled with catching the melting wax on my finger and letting it dry into a mushy cast that I quickly rolled into a ball and placed on the base of the red and green candleholder. Suddenly, the door folded open and a slight gust of wind quickly blew out the tiny flame.

"JOSHUA! WHAT ARE YOU DOING?! LOOK AT YOUR SHIRTS!!!" my mother screamed.

I looked over and noticed that the lower corner of some hanging shirts were soot black from the flame I had unknowingly placed beneath them. I looked up at my mother like a deer in headlights, unable to speak or move. I honestly had no idea what I was doing was bad or could've ended up in disaster. My mother sat me down and explained the basic premise of fire safety and why I couldn't do what I was doing. I agreed with her, but only because I wanted to stop what seemed like an unending lecture. I didn't see what the big deal was and I wanted to get back to my fun.

 Let me clarify something: I wasn't a pyro. It was never my intention to set everything aflame. I just liked the look of the candle and playing with the wax. What's the big deal? At least, that was my thought process when I went searching for a new candle and flame creating apparatus a short time later. It was clear to me that my mother did not share my casual attitude toward the controlled burn in my closet  because she was irate when she caught me again. I had no reason for the "deer in headlights" look this time. I knew what I was doing was not acceptable in our home...I just did it anyway...you know, like any normal little boy would...because I we're all dumb.

I was grounded for a week and Mom hid every candle, book of matches and lighter in our house. I don't remember what I said to her, but I do remember naively questioning where all the candles disappeared to. That was when my mother decided I needed further intervention.

A few weeks later, Mom drove me up to the local firehouse where they were having a fire safety day for the whole neighborhood to attend. We got to look at the fire engines and see all of the equipment they used. They talked about the dangers of fire, how quickly a fire can go from safe to deadly and how important it is to know what to do in case their was ever a fire in our home.  They even had a two story house to simulate a fire and walk kids through all the fire safety steps. Unfortunately, I had the attention span of a gnat at the time. "Ooooooooh....red and shiny things are fun!" I thought to myself as they relayed the information so vital to the next part of the story...

At the end of the presentation it was time for everyone to spilt up into small groups and go through the house simulator to test our knowledge. My plan was to keep quiet, fade into the background and not look like an idiot because I wasn't paying attention. Unbeknownst to me, my mother had taken the time to speak with the firefighters about my candle incident before the day started. She asked them to pull me aside after all the activities were through and have a private conversations about how dangerous fire and playing with matches can be.

That's not what happened...

From the moment I walked into the house the firefighter made sure to call me out by name and be the first one to complete all of the steps.

"Josh is going to check for smoke..."

"Josh is going to check the door handle to see if it's too hot to touch..."

"Josh is going to yell out the window for help..."

And so on and so on...

I had no idea what to do for any of the steps, so the firefighter had to explain it all again to me in front of my annoyed friends. I began to sense a pattern by the time we got to the last room where we found out that, in this scenario, the fire was accidentally started by a kid playing with a candle in his closet.

"WOW. How did he know?!" I thought in my naive little melon.

"Do YOU know what could've happened, Josh?" the firefighter blurted out, his low voice reverberating in my head like a heavy bass line in a Motown classic.

I sat there stunned that he'd called me out in front of a half dozen neighborhood kids that I was going to see for the rest of my adolescence. So I did what any proud and brave little boy would do to save face in front of his peers...I started bawling like a baby and ran flailing out of the house, past my distressed mother, squealing and screaming like a piglet caught by the tail until I made it home a half mile later.

Mom came home a shortly afterward and apologized for the way things happened. She said she would've been home sooner, but she had to have "a talk" with the firefighters. (She told me years later that "the talk" consisted of my mother chewing out the firefighter that embarrassed me for a good ten minutes because that wasn't what she asked them to do at all.)

She continued on to say that while she apologized for the way that it happened, she wasn't going to apologize for why it had to happen:

"You clearly weren't listening to me, so I had to take other measures. Be mad at me all you want, but you needed to understand what you were doing was wrong." she lovingly said.

I hugged my mom, but I didn't speak to her for a few days and I damn sure never touched a match again for years...wuss that I was...and still kind of am. Lesson clearly learned.

Nowadays, my wife will occasionally light a candle...usually after I leave the bathroom for some reason...and the first thought that pops in head is this story, which always makes me smile and think of my mom...and Beavis from "Beavis and Butthead". FIRE! FIRE! FIIIIIIIIIRE!

I swear, I'm not a pyro.

Peaceful and Safe Pyro-esque Things,

Josh

Saturday, June 15, 2013

What A Good Father Does

 A good father...

• Is enamored with their child from the moment they are born.

• Sacrifices anything and everything to keep his family safe and secure.

• Makes time for his children and makes memories with them early and often.

• Makes up for the unfortunate moments when he cannot be there in person for his family and realizes when and if he needs to make changes in his life to be a greater presence in theirs.

• Is a father to his children YEARS before he'll be a friend to them. He loves them unconditionally and, through that love, guides them to be good, generous and caring people. That might mean disciplining them from time to time, making them do chores or stay home for family night or saying the always unpopular "NO", but it'll be worth it in the long run and there will probably a few good stories from it twenty years down the road while reminiscing at family gatherings.

• Supports and encourages his children in whatever they choose to do even if it's something he doesn't understand or have any interest in.

• Expects nothing less than 100% effort from them even in failure. 

• Lets his children know that failure is okay and is a part of life. He teaches them that they can either let failure define them or live through it, learn from it and succeed another day. He instills in them that failure is a temporary setback toward being successful at life.

• Lets his children know that even if he doesn't agree with them, he's never too proud to at least listen to what they are saying and acknowledge their feelings.

• Never stops learning from and about his children.

• Never intentionally degrades his children or hurts them.

• Is man enough to say he's sorry and admits when he is wrong.

• Never knowingly puts his children in the middle of a negative situation.

• Always shows his children that he loves them through his actions and makes sure he says "I love you" once in a while...even though that might be hard for him to do.

• Lets his children experience as much as they can in life and be brave enough to let their children live because that's the gift he gave them. LIFE.

Happy Father's Day to every father and father figure I know. 

Peaceful Things,

Josh


Saturday, May 25, 2013

Joshland Unfiltered Podcast: Episode 6 - Living With B. Cepacia


The newest episode of the Joshland Unfiltered Podcast is up and ready for your hearing aparatuses. Or is it aparatusi? Anyways...

In this episode we chat with Diana and Lauren about living with CF and the "big-bad-bug" that is burkholderia cepacia. They make no bones about the fact that b. cepacia is a serious respiratory bacteria that comes with many life-altering consequences, but they aren't going to let it stop them from living their lives and achieving their goals.


In non-CF babble...err...content, we talk about stupid things people say to CFers, dogs dancing to dubstep and Barry Manilow? Yes, Barry Manilow. 

This was an interesting episode for me since I know very little about b. cepacia. In fact, the only thing I was told about it is that it's a terrible bug that know one wants to get because it can do major damage to your health and limit your options for care and transplant during the end stages of cystic fibrosis.

In other words, it's a nameless, faceless monster that has everyone freaking out about who they're around and what they touch...which is completely understandable because I, for one, don't want to get it and I certainly am frustrated for Lauren, Diana and anyone else who cultures it.

At the same time, B. Cepacia has a lot of different strains and affects every person who has it differently. You can't predict how it will grow or change, you can't predict what your health will be like in one year or ten years, so I think Diana and Lauren are great examples of two people who are making the most with their lives despite the tough hand they've been dealt. 


I took more from their very happy go lucky attitudes on and off air than I did from the b. cepacia talk. Don't get me wrong, I learned a lot from them about B.C., but I found their joyful presence to be so uplifting.

There was no hesitation in their voices and there was no sound of constant fear in their voices. These two women were honest with their thoughts, the reality of their futures and the happiness they live in today. As with all of our guests, I feel more inspired for having known them and sharing our conversation with all of you. Together we're educating the masses and we're showing the world that people with CF are just normal people who like videos of dancing dogs and are HUGE Barry Manilow fans. 

We are more than CF. 


JUP on iTunes:

https://itunes.apple.com/us/podcast/joshland-unfiltered/id567358131

Podcast Player on the JUP Fanpage:

https://www.facebook.com/JoshlandPodcast/app_282096688512542

For a more technical explanation of B. Cepacia check out the CFF website:

http://www.cff.org/LivingWithCF/StayingHealthy/Germs/Bcepacia/

Check out Diana and her husband George's care care products that benefit the CF Foundation:

http://www.65rosescarcare.com/

And check out Lauren's blog:

http://ihavecfsowhat.blogspot.com/


Peaceful Things and Stay Positive,

Josh and Tim



Saturday, May 4, 2013

Turning Red-Faced: Explaining My CF Cough


I didn't have a constant and noticeable cough until I was in my mid-twenties, but now—healthy or sick—it's a daily occurrence.

In my younger days, I'd try to suppress my cough in public so I wouldn't look stupid in front of other people. As an adult, I just stopped caring because I decided breathing comes before personal aesthetic concern.

Sometimes my CF cough is like a natural disaster, easily predictable because the slow build up is there for all to see. When it hits, it wreaks havoc on any occasion—wedding ceremonies, holiday dinners quite movie theaters and quite restaurants— then disappears as quickly as it came.

My friends who know me best will look at me with mild concern, cocking their head like a dog who heard a funny noise until I give them the high sign that everything's cool. My family will outright ignore me unless I give them a reason to worry or the cough becomes more prolonged than usual. For the most part, they just let the chaos ensue without a flinch because they know I hate the attention.

But then, there are the people that stare. The strangers who glare but make no attempt to help. Sometimes they'll make a half-hearted gesture of concern, but I can see them trying to recall the Good Samaritan Law in their head, weighing the risks and benefits of helping this pitiful guy out. I don't blame them...I'm certain I've done the same thing in my lifetime, but it doesn't make it okay.

That's when I just let it fly... over exaggerating my situation, pretending to play the most violent game of charades known to man, smiling with sinister delight because I'm so tired of being stared at for something I can't control. I have no guilt over this because sometimes freaking people out who gawk like I'm a sideshow attraction is the only way to have control of an uncontrollable necessity.

People liken having CF and coughing to drowning, but I've never felt that way. If I had to describe it to a normal person, I compare it to something more relatable...like choking. You know the feeling...the gag sensation and that involuntary panic you have when something goes "down the wrong pipe". You scamper around the table searching for a a glass of water to help you dislodge the offender or hope that— if you do collapse despite your best efforts—someone with graciously perform the heimlich maneuver on your prone carcass before you completely pass out of oxygen deprivation. Suddenly, the food moves through your esophagus, your face goes back to human form and you sit there embarrassed that it happened...regardless if you're by yourself or in a crowded restaurant. The CF cough is just like that, except instead of food...it's mucus. At least for me, that's how it goes.

Until recently, I never realized how I looked when I cough. Perhaps I just forgot because I'm rarely in front of a mirror on those occasions, but I hadn't seen what I looked like when it happens in years. My face turns fire truck red, which is fitting because my entire face feels like it's engulfed in flames. My eyes turn bloodshot and my body trembles, convulses and contorts in an effort to clear this wretched, infected fluid from my lungs. I hated how I looked, I hated how it felt and I hated knowing that it will happen again...that happens all the time.

While I hate it, I understand it's purpose. As Dr. Abosaida from Blanks Children's Hospital so bluntly and eloquently put it during his presentation at CF Education Day:

"You cough, you live. You don't cough, you die."

I laughed my ass off while many of the parents in attendance listened in mild shock. I laughed because it was so simple, but so very, very true.

So I apologize ahead of time if I ruin our outing, our dinner or our matinee. I hope that my phlegm-purging hasn't hindered your theater experience or put a damper on your evening out. You'll have to forgive me...I'm trying to breathe...trying to live...and it looks @#$% ridiculous and frightening. You're welcome.

Peaceful Things,

Josh

Wednesday, May 1, 2013

Squeezing Wisdom From a Ripe Avocado

An elderly woman frantically started waving her arms in front of my face while I was picking out avocados at the grocery store. I couldn't hear her because —being the youngster than I am—I was being anti-social and listening to a podcast while I was shopping. I quickly pulled out my earbuds, gently grabbed her arm and said:

"WHAT'S WRONG?! ARE YOU OKAY?!"

As the entire produce section stared at me, I realized I still had half an earbud in, so I was yelling loud enough to wake the dead. I'm an idiot.

"I'm sorry to bother you. I see you're shopping for avocados and I was wondering if you know how to tell if one is ready to eat?" she replied.

"Well, I'm not a avocado eater, but I can sure help you pick one out. I do it all the time because I buy them for my wife. She loves them." I confidently stated.

"Oooooh, you go to the grocery store and know what your wife likes too?! He's a keeper." she proclaimed to anyone within earshot.

"Well, I do my best. She's my sunshine and I adore her. You know, I'm happily married to my wife...at least until she finds somebody better." I sarcastically quipped, telling this woman how that's our running joke and our ability to poke fun at each other is one of the best things about our marriage. 

All of the sudden, this woman started crying.

"It's so nice to hear that from a man. That you love her and would do anything for her. That you don't take your marriage for granted. It's rare nowadays. People get divorced at the first sign of trouble, but marriage is hard work and it's nice to see that you appreciate that."

As I blushed with humility, she went on to tell me that her husband died two decades ago and she's been so lonesome for him every day since then. That she sits alone at dinner and talks to the chair he used to sit in at their table. That her grandson died of Chronic Obstructive Pulmonary Disorder a few years ago and she wished he'd had the chance to meet a girl like I have. That she has conversations with anything and anyone that will listen because she loves people and she's afraid to be alone. 

I took a deep breath and shared a summary of my life with CF. How—even though I've had and continue to have a lot of darkness in my life— I've been blessed with so much in 34 years, more than most people have had in their lifetime. I told her that I didn't understand COPD, but I could understand not being able to breathe. That I know how precious life is and I cherish every day with my wife. I promise that I'll never take our time together for granted.  I gave the woman a hug and a kiss, then I took our picture together to share our moment with you.

I get scared that I'll die young. That my wife will be a widow and that if we ever choose to have children, they will someday be without their father. I know they'll be okay without me because life goes on and people have lived through worse. Perhaps someday Carly may get remarried to a "normal" guy without all the extras. That things would be simpler for her than they are right now. And that's what I'd want for her...but that's forecasting a future that no one can predict. We don't know how much time we have and it's unfair to the present to try and predict the future.

So I'll spend each day of the rest of my life loving her. The sparkle in her eyes. The way she has a slight dimple in one cheek that only appears when I really make her smile. The way she asks me how to wear her hair when we go to my speaking events, not because she has to, but because she wants to look her best for me even though I think she's gorgeous no matter what she wears.

Joshland note: Honestly, she could be on her third day without showering, wearing sweatpants and a dirty old t-shirt and I'd still try to put the moves on her.

I adore how we lovingly tease each other and she does so with a playfully evil giggle. How she always pushes me to be a better person while making sure I protect my health and my heart. How she loves me for me, she doesn't care about my CF bullshit and is my link to my real life. She reminds me that life is more than just CF and that I need to separate my role in the CF Community from my role as a regular man who has a whole other universe to tend to and love on.

She will love me forever because that's what she promised to do, just like this woman promised her husband years ago. That's an amazing gift to have.

Life provides little reminders of what's important at the most unexpected places...even at the grocery store squeezing avocados.

Carolyn, you're a beautiful angel. Thank you for loving me when I unknowingly needed it. Thank you, Carly for being my angel and the boss of me. I've never been happier.

Peaceful Things,

Josh

Monday, March 18, 2013

Joshland Unfiltered Podcast: Episode 5 - Being a Parent with Cystic Fibrosis



Hey Folks! Here's the latest episode of the Joshland Unfiltered Podcast. The discussion topic is Parenting with CF and features super parents Brian J. from CF Riders and Jenny L. blogger extraordinaire at "My Life As A Livingston". They did an fantastic job on the podcast, sharing their stories—good and bad—as parents and the constant challenge to find balance between CF care obligations and experiencing life to the fullest.

The podcast is starting to find it's footing. Tim and I are becoming more and more comfortable with the format of the show,  how we work together and the conversations with and between our panelists are more free flowing and natural. The best part is that the open dialogue is creating new avenues for future material. Plus...I'm getting better about not talking so much and rambling incoherently...at least, I think I am.

 This episode was challenging for me because the subject of family and children in Joshland has been on my mind for a long time...but it's really coming to the forefront as of late. My wife and I are godparents twice over to two beautiful children—Princess Chloepants and Mr. Small Fry Ry-Ry. We love them both so much and we love to spend every moment we can with them, but I wonder...will that be enough love to fill the rest of our days?

When a couple or friend adds a child into the fold, there's a natural and completely understandable need for them to sacrifice many things outside the family bubble and gravitate toward people who are on the same path. It leaves me feeling a little bit lost and makes me think...should we be doing this too? Is this a wise choice for us when it comes to my journey with CF? I can't answer any of those questions right now, but one thing is for sure: This podcast has certainly given me and many of my kindred spirits in the CF Community lots to think about.

Here's how you can listen:

Click here to listen to and subscribe to us on iTunes

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Peaceful Things and Stay Positive,

Josh and Tim

Thursday, February 21, 2013

This One's For The "Triers"


Over the years I've been blessed to have an amazing support system in place. One that many would give anything to have and hope for everyday. From time to time the occasional doubter has crossed into my support system. Worse yet, this doubter is a two faced liar who earns my trust, only to break my heart and abuse my friendship. Those are the most dangerous people to let in because they'll do the most damage to your life if you let them. To my knowledge, my life is purged of those kinds of people and has been for years. However, if there are any of you hiding within or lurking around the borders of Joshland, I hope you read this and I hope you take it to heart.

This post is dedicated to the "Triers".

.........

You tell me that I'm an inspiration, then you second guess me when I tell you my dreams. You say you support me, then you tell others how you're worried I'm in over my head. You're talking to an adult who handles more on a daily basis than most people could ever imagine, but then you treat me like a child that can't tie their shoes. I need your help and I ask for your support and you only give me condescending pity.

Tell me I can't do something..I dare you. 

I'll make a mental note of everything you don't have the guts to admit to me, but I know you believe in your heart. Then, I'll take that dare and one of two things will happen: 

I will succeed and shove your doubts right back in your face. I won't gloat or boast. I won't trash talk or brag. I'll do it all with my actions and my determination. I might hope for an apology, but I won't expect one because you're too proud and stubborn for that. 

Or maybe I'll give it everything I've got and I'll still fail. I will not reach my goal. I'll fall flat on my face. Maybe everything you expected would happen will happen. Even though you won't make a sound when you see me, the look on your face will tell me all I need to know…"I told you so. I'm sorry it happened this way, but I told you so."

You'd think that might bother me…and you'd be right. I'll be heartbroken because my dream didn't come true…because sometimes that's how life works. So I'll dust myself off, dry my tears and find another dream to chase, but it'll scar me even more that someone I trusted…someone I believed in…doesn't believe in me. 

Still…while I'm thinking about that…I'll also be smiling. See, while you sat on the sidelines warning me about the perils of having my dreams crushed by disappointment, I was out there trying to make my dreams come true. I was out there because I never wanted to wonder "what if?" for the rest of my life. I never wanted to be you and because I tried…I never will be you. 

I don't wear my smile to mock you. I don't have time for that nonsense. I wear my smile because I'm proud of what I did and who I am. That's worth a grin for a moment or two.


"I'd rather try and fail, than fail to try." ~ Anonymous

..........

Peaceful Things,

Josh

Monday, February 11, 2013

Joshland Unfiltered Podcast: Episode 4 - Cystic Fibrosis Couples


I didn't forget to post this podcast. I just needed a break before I did. This was one of the hardest and best things I've ever done as a member of the CF Community...and it sometimes hurts to face.


This episode is focused on adults with cystic fibrosis who choose to be in a romantic, long-term relationship. In the case of our to guest panelists, Kev and Rhiannon, that relationship turned into a wonderful marriage...but it was not without it critics. Romantic relationships between people with CF are not encouraged because of the risk of cross infection and cross contamination. In fact, some people in the CF Community speak openly against this choice because - based on scientific studies - it's a potential danger to the health of both adults and - in their opinion -it's a bad example to others in the community. It needed to be talked about and Rhiannon and Kev were up for the challenge.

However, this episode almost didn't make it to air. Here's why:

Rhiannon had some CF related health issues shortly after the taping of this episode that landed her in the hospital. To the shock of many of her family and friends, Rhi's body could not recuperate from these issues and she unexpectedly died. It was heartbreaking to all of us, but no one felt more pain than her husband, Kev.

After Rhi died, Tim and I told Kev that he wasn't obligated to share this podcast with anyone and that we'd happily edit it together as a gift for him and those he chose to share it with. Kev insisted that we share this podcast with everyone because this story was too important to go untold. That somewhere out there are people who misunderstand what it means to be a CF couple and that it is VERY important it is to weigh the options before making such a life changing decision...but to never let cystic fibrosis stop you from being happy. More importantly, he wanted to give people the opportunity to hear Rhi's voice just one more time.  

Kev and Rhiannon are two of the many reasons why I'm so proud of this podcast and why thankful to my friend and producer Tim Grossklaus as well as the CF Community for giving of their time and energy to something worthwhile. Every story needs to be told...even the ones we might not want to hear or agree with. I could rave on and about this podcast, but it wouldn't do it justice.Please take your time to listen to the story and share the lives of two people who happened to have CF...and fell in love.

Thank you to Kev and Rhiannon for this gift and their bravery. Thank you, Rhiannon, for just "being". The world was brighter while you were here.

JUP on iTunes:

https://itunes.apple.com/us/podcast/joshland-unfiltered/id567358131

Podcast Player on the JUP Fanpage:

https://www.facebook.com/JoshlandPodcast/app_282096688512542


Peaceful Things, Stay Positive and Love Always,

Josh and Tim

Wednesday, January 23, 2013

What Words We Use And How They Are Defined

When I hear the word "pity', it's like nails on the chalkboard. In my head, if you pity me, you think less of me and what I can do. That without your help I'd wither away and die...that it's pointless to even make an effort. 

Early this morning I was looking for an inspirational quote that used the word "pity" in a way showed my thoughts above, but I couldn't find anything. I searched and searched for it on the interwebs, but every quote I came upon used pity in a positive context. I was so confused, so I looked up "pity" in the dictionary and here was the definition:

....


Pit·y
  

/ˈpitē/
Noun
The feeling of sorrow and compassion caused by the suffering and misfortunes of others.
Verb
Feel sorrow for the misfortunes of.
Synonyms
noun.  compassion - mercy - sympathy - ruth - remorse
verb.  commiserate - sympathize

....

I read the definition over and over again thinking it was wrong. "Compassion" is NOT a synonym of "Pity. When I hear the word compassion, I envision the love and generosity of mankind. That people see someone working so hard to follow their dreams in spite of all their struggles and are so moved that they want to help that person reach their full potential in whatever way they can. They help because they believe in someone's potential.

 In an effort to soothe my soul, I looked up the word "compassion":

....


Com·pas·sion  


/kəmˈpaSHən/
Noun
Sympathetic pity and concern for the sufferings or misfortunes of others: "the victims should be treated with compassion".
Synonyms
pity - mercy - sympathy - commiseration - ruth - clemency

....

My mind was blown. 

How can two words that mean the same thing by written definition, yet illicit such different emotional interpretations in my heart? It's been two hours and I still can't wrap my mind around it.

My only thoughts are that words are powerful and, like everything in life, they are open to individual interpretation. They have the ability to empower or destroy what someone has worked so hard for. They have the strength to fill our hearts with love or agony that can rattle even the most strong-willed soul. And yes, when those words are dark you can live through them, but—just like physical trauma—those words can leave emotional scars. I know they have in me...I just didn't know how deep those scars were until recently.

When I speak at events, I know how tempting it is to latch onto a phrase because it's simple, powerful and memorable. I know it's important to make a mark on a person by showing the darkness that can be a part of our lives. That's all part of being real, but I don't want the true essence of a person, place or thing to get lost in a well meant and impassioned effort to compel others to help us. 

I don't want anyone to feel sorry for me or my sister. I just want people to know our story and the story of thousands like us who live life with passion and overcome so much...even in loss or death. A belief that we are more than what we're labeled with...two little letters that can go to hell.

These aren't just words in a blog, lyrics in a video, phrases in a graphic or a message in a speech. We represent the memory of who someone was or is, what something is and what we see for the future. It's not a game, a campaign or a trendy catch phrase. It's real life and it's important to respect that.

I know almost everything in life is open to individual interpretation, and thank God we all have free will to make those interpretations. All I'm asking is that when you do interpret something...take everything you can into consideration. 

And above all: Have compassion...and not pity. In my mind there is a difference.

Peaceful Things,

Josh

Tuesday, January 1, 2013

Resolutions


I have a list of resolutions for 2013:

–––

1. Make more lists and leave myself helpful reminders.

• I don't hate very many things. Only snakes, heights, birds and Regis Philbin. I mean, come on! Regis is so annoying on TV, yet he has more hours on television than anyone in history. That just doesn't make a lick of sense to me. I don't hate him as person, just as an annoying person he portrays on my TV. He's been gone for a few years now and he still bugs the hell out of me...Anyways...

I've recently become aware that I hate lists. Maybe it's because they're so long and never ending, maybe it's because I'm a stubborn jackass who refuses to believe I can't store everything in my brain and get it done without reminders. Maybe it's because I'm embarrassed to admit that my mind doesn't work quite like everyone else's thanks to cerebral palsy.

Whatever the case, I'm going to be like Santa up in this muthafluffer and make a list every day that I can check twice...or probably more than that.

2. Stop multitasking so much.

• I play on the internet while I watch TV and I spend too much time looking at my phone when I'm out with friends. I really don't like the fact that I can't just watch a show anymore—that my brain needs to be doing something else too. The more I think about it, the more it annoys me. What did I do before the internet? God forbid I actually had an attention span that was longer than a toddler or that I didn't need my phone attached to my hand 24 hours a day. It stops today.

3. Spend a set time blogging, puppeteering, podcasting, creating presentations and and being on social media.

• I'm going to allot myself time to do each thing during the week because I love to be creative and I love connecting with the CF Community. However, that creative time will have a definitive start and end point. It has to or I'll lose myself in all this CF stuff. Being engulfed in one thing and neglectful of other equally important things isn't healthy.

4. Gossip less and encourage others more while still being respectfully honest.

• I ain't perfect. People, places and things piss me off, but I know can deal with my feelings better than I do sometimes. I just gotta be like Thumper from Disney's "Bambi":



Negativity is an evil time and energy sucker. It's time I worry more about what I'm doing rather than complaining about what other people are doing.

5. and 6. Take better care of myself so I can give more of my time to others AND lessen my guilt over things I cannot control.

• Still trying to find the balance I need on these two. Hoping I'll get closer in 2013.

7. Read 12 books this year.

• More words from a page, less late night YouTubes.

8. Write more funny stories on my blog.

• Too many sad stories this year in Joshland. Time to bring back the silly.

9. Be more active.

This is a pattern I seem to fall into every year. The snow hits and I worry more about preventing a cold than I do about replacing my daily exercise routine of walking the dogs and pushing my physical limits in daily chores or activities. I'd also like to give running another shot, but with a less intense training regimen than the last time.

10. Take the time to be happy every day, even in the worst of times.

• No matter what happens in my life, there is always something to smile about every single day. It doesn't have to be for very long, but I need to be open to accepting those gifts when they come. That's why it's called "being present".

____

I'm sure I'll add more, but for now that's my list. Hey! I just made a list for the day! Who's productive and smells like cheap body wash? I do! I do! Self high-five!

Peaceful Things,

Josh

What'd You Think?

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Peaceful Things ~ Josh
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