Tuesday, December 25, 2012
Thursday, December 13, 2012
The Joshland Unfiltered Podcast: Episode 3 - Music, Musicians and Cystic Fibrosis: A "Breathe" Reunion
Click here to listen to us on our Facebook Fanpage
HUGE SHOUT OUT to Timmy G for editing this so quickly and being the straw that stirs the Joshland Podcast beverage! Also, love and peace to Matt's friends and family. He and Angie are loved and missed now and always.
Download their albums on iTunes or find out how to purchase your own autographed copy of each of their albums for the best stocking stuffers in the universe!
Here are the links to the UK charity that Matt's family started in his honor and of course the AMAZING Breathe Song Event that features all of us including Matt.
The "Breathe Song Event": http://www.cfvoice.com/info/breathe/index.jsp
Check it out on our Podcast Player and subscribe to us on iTunes so you can download all the awesome shnizz! You're welcome. *ding*
Don't forget to:
Click here to listen to us on our Facebook Fanpage
Peaceful and Podcasting Things,
Friday, December 7, 2012
In order to avoid those angry feelings again (or at least lessen them), I intend to write a few good Christmas memories during December. So, without further delay, here's "Navidad Historia Número Uno":
One Christmas Eve, once we got home from our a traditional spaghetti dinner at Grandma Miller's house, we put out "angel cookies" and a birthday card for Jesus, "Santa Cookies" and carrots for Santa and his reindeer and tenderly placed our letters to Santa in our stocking where we knew he wouldn't miss them.
Like any other child worth their salt on Christmas Eve, we delayed our bedtime for as long as humanly possible. Extended bedtime stories, bathroom breaks, extra prayers and giggly pretending to sleep in the hopes that we'd get a glimpse of the chubby fella with the beard full of cookie crumbs. And then the light threats came:
"If you don't go to sleep Santa won't come, remember?" Mom said with a firm and factual tone.
I looked at my mother like she'd farted in church and thought to myself "Crap, that's right! He's got that sixth sense thing that only moms, animals and the Tooth Fairy have. FINE! I'll go to sleep!" And off to sleep I went, dreaming of…well…I dunno…Stuff little kids dream of.
I awoke awhile later to a strange rustling coming from the living room. It scared the @#$% out of me until I realized it was probably Santa...which, when you think about it, is really messed up. Only on Christmas Eve do we feel like it's okay to let a weird old man in furry pajamas into our home. Any other day and it'd be a "stun gun and call the cops" type of situation. With that in mind, I mustered up the guts to peek around the corner, my plastic moulded triceratops held tightly in my grasp just in case it wasn't Santa. I'd used the triceratops on my sister a few days earlier, so I knew it could cause damage to a human if necessary.
Sure enough, it wasn't Santa…It was my Mom and Dad.
They must have heard the noise before me, so they'd come to check on the situation. There was Dad, examining what Santa brought me: A Castle GraySkull Playset and an Attack-Trak assault vehicle for my He-Man collection. He was pacing around it, making sure it was put together just right. Then he put fresh batteries in the Attack Trak…something Santa must have overlooked in his haste to stay on schedule. I'm sure Dad inspected Angie's toys too, but I couldn't be bothered to pay attention to that stuff. Girl toys were dumb. I'm sure Santa got her something good, though.
I saw Mom taking a bite from one of the left over cookies Santa had half eaten. She knew Santa was probably full of cookies by the end of the night and she didn't want us to be disappointed.
(Joshland Note: I've often wondered: Is Santa diabetic or do you think he's magically immune to insulin dependency?)
While I was watching my parents, I realized they were helping Santa do his job the best he could. It's something that I imagined lots of other parents and loved ones did that night too, making Christmas morning perfect for the kids in their family. A warm fuzzy feeling filled my heart as I ran back to my bed, giddy with anticipation for the butt crack of dawn when I could play with my toys and spend time with my family. The moment the sun shone through my window later that Christmas morning, I leapt out of bed, fell face first on the floor, cried for a minute and then sucked it up so I could head to the living room. With tears of pain and joy on my face, I opened the drawbridge of Castle Grayskull pushing my well-worn He-Man action figure through the door and into my imagination.
Angie joined me a short time later to play with her whatchamacallit girly toy, followed by my sloth-like parents. They were smiling ear to ear, Mom clinching her coffee and Dad nodding off in the corner of the couch. They looked exhausted as if they'd been working all night to prepare some kind of big to-do, but I knew better. I knew they helped a little bit and I was grateful, but Santa did all the work and Jesus kept him safe. Both working together to share the spirit of Christmas. We sang "Happy Birthday" to Jesus, had pancakes for breakfast, and spent time together as a family giving lots of hugs and kisses and being thankful for everything that we had in our lives.
Little did I know how different our lives would become a few years later. Once I started writing this story, I was amazed at how vividly everything popped into my head and how precious that memory is to me.
As an adult who participates in both the religious meaning of Christmas and the traditions of Santa Claus, I can tell you they've influenced who I am. For every "Santa Claus is Comin' To Town" there was a "Hark! The Herald Angels Sing". For every Christmas cookie there was a prayer. For every stocking on the fireplace there were statues of wise men bearing gifts and a little baby in a manger. Both are people who we cannot see, but do things with great love in their hearts. God represents love, forgiveness, compassion and acceptance...things I believe in to my very core. Santa Claus is a wonderful example of generosity and giving without the need for reciprocation or acknowledgement…again, things I believe in to my very core.
Whether you're religious or not, the meaning Christmas is always within your power. It is love, generosity and goodwill to all. How can that be wrong?
P.S. - Speaking of the spirit of season…
There's a 9 year old little boy named Dalton DIngus in Kentucky that needs a little extra love this Christmas. He's been sent home from the hospital early this year because he's in the end stages of his life with cystic fibrosis. His Christmas wish is to get a ton of Christmas cards. His friends and family want to make his dream come true and he's currently at 15,000+. It'll take a moment of your day to make this little guy smile forever. Here's the address, the rest is up to you. Send your amazing and happy cards to:
Dalton Dingus HC
62 Box 1249
Salyersville, KY 41465
For those of you questioning if it's a hoax, it's not. He's been on Fox news in Kentucky and the local fire department shared a picture with him on their Facebook page. Besides the fact that it's a flippin' card and you're out a few bucks, a little creativity and a stamp. I think it's worth the risk.
Tuesday, November 20, 2012
P.S. - I said "That's what she said." out loud to myself and laughed a lot. I need to get out more."
I'll miss the spongy substances that you called baked goods and remind me of my childhood. The way that Wonder Bread would return to it's original form even after I squished it in my hand. The way you inadvertently planted the seed for the erotic cake industry by using a drawing of a Twinkie mascot wearing a cowboy hat, bandana, boots and nothing else while twirling a lasso.
There's a Hostess store a block away from my house. Today I'll buy and eat one last pack of TRUE Hostess Twinkies, sacrificing every vital organ in my body to process a "product" that has more preservatives and chemicals in it than Keith Richards of the Rollings Stones.
I presume that's how Keith is still alive...a diet of Twinkies that absorbs all the drugs."
Tuesday, November 13, 2012
Well...it's here! The first REAL episode with our guest panelists, Emily and Kelsey as well as the music of CF rapper Bobby "B.Fos" Foster is uploaded for your listening pleasure. I'll let the episode about transitioning from the pediatric to the adult CF care team speak for itself. You can listen to it here, but it would really help if you subscribe to us on iTunes as well.
Click here to listen to us on our Facebook Fanpage
I also want to make sure you go to the Joshland Podcast here on Welcome to Joshland and consider donating a few bucks to purchase headphones for our guests. Listen to the podcast or read this link to see why...
ABOUT THE JOSHLAND PODCAST
Now...I wanted to talk for a moment about taping a podcast...
I give Emily, Kelsey and every future podcast guest a ton of credit for being on the show. Sitting in front of a microphone and sharing your thoughts isn't easy because when you're on a recorded podcast or a radio show, what you say is out there to be heard and critiqued forever. They're wonderful people and I'm proud to have them as guests on our first podcast. I applaud their bravery and honesty, therefore, I must be brave too. Here it goes...
When I speak in front of an audience, I have a rehearsed and well crafted speech. I'm never nervous in front of people and I think that's because it's a gift I've been given. It's something I was meant to do. Share my story and support others with my words. Not to sound arrogant, but when it comes to public speaking...I'm damn good at what I do.
A podcast is a different animal.
When anyone is asked a question on the spot or they're under a little pressure to come up with the right words, they use what are called "filler words"—umms, aaaahs, and ya knows—while they're trying to convey their thoughts. Because of my cerebral palsy I do this all the time...pressure or not. I tend to talk my thought process out loud and my true thoughts and or message gets discombobulated through my verbal vomit. I know I'm doing it while I'm doing it, but it's really hard to control. Sometimes I cry because I know what I want to say in my head, but it doesn't come out that way at all. Then the CF lung issues kick in and I sound like a hyperventilating imbecile.
That's why I waffled over whether or not to start this project. I'm not afraid to be honest and say what I think when needed because nothing I say is ever intentionally malicious or hurtful, but as I said before...this is out there forever. I can change what I say in a blog post, I can craft a response on Facebook or in a chat room, but not on a podcast. Would it hurt me as a public speaker? Would I say something that might ruffle some feathers? Would I say something that might upset parents who have kids that love Moganko? All because I can't control my words?
Then I thought about it a little more and I decided I can't worry about what others think of me. I have to be myself. Thanks to my friend and producer, Tim Grossklaus, I have the opportunity to give people a voice that haven't had the opportunity to share their story. I have the opportunity to grow as a person and face my challenge of cerebral palsy head on. To listen to Tim and learn patience, how to slow down and speak clearly to my audience and still be the fun-loving guy people expect me to be. We really are having a good time when we're recording. You can't fake laughter and fun and I hope that comes across in each episode. Thank you, Tim, for the opportunity.
I hope you'll tune in each and every podcast to learn about these people, their life with CF, their life beyond CF and to listen to me turn those umms and aaahs into beautifully crafted and conveyed thoughts over the coming months and hopefully years of this podcast. Beating CF and CP at the same time. Sounds good to me. Literally.
Don't forget to:
Wednesday, November 7, 2012
What if the ground trembled and the earth opened up, sending everything down into a ravine of darkness, hate, and fear? What if you saw me hanging from my fingertips off the edge of that ravine? Would you save me?
What if - not five minutes beforehand - I told you something about me.....What if I told you that I was a (Insert race, religious/non-religious belief, socio-economic class, sexual orientation, etc...here.) person? What if I told you that I don't agree with (Insert race, religious/non-religious belief, socio-economic class, sexual orientation, etc...here.) people? What if the thing I told you was against every moral fiber in your being? Would you still save me?
My Blogger Profile reads:
"I'm a young man who has seen so much and so little that I decided to record the events of my life - big and small. The stories in this blog are honest, true, and sometimes graphic in language and events. There is not a story posted on this blog that is intentionally malicious or hurtful. Please keep in mind that while I may refer to my Christian beliefs from time to time, I have learned so much from so many fantastic people with different beliefs than my own and I cherish those people and experiences."
I believe in the power of being good to others regardless of their beliefs, the way they live their lives, and their opinions on the "taboo" topics. As long as you are caring, helpful, respectful, and do not spread hate in the world, then you are good to go in my book.
I'm honored to have people from all different walks of life reading my stories. In my heart, I think it means maybe we ARE willing take the time to listen to each other. Even if we aren't convinced by someone else's opinion, MAYBE we can respectfully agree to disagree while learning a little bit ourselves and those around us.
Could we even develop a friendship despite those differences? GASP! How bizarre!
The gift of listening is priceless. Unfortunately, few give that gift unconditionally. But based on all the diversity of my readers, I still have hope. Call me an optimistic realist, but I just want the world to figure it out and get along. I know it's a long shot, but forgive me...I'm one of those "Shiny, Happy, People" that REM was singing about.
Because there is one thing that we all have in common regardless of our personal beliefs:
So I ask you...
What if the ground trembled and the earth opened up, sending everything down into a ravine of darkness, hate, and fear? What if you saw me hanging from my fingertips off the edge of that ravine? Would you save me? What if - not five minutes beforehand - I told you something about me that was against every moral fiber in your being? Would you still save me?
Because I would save you.
But what do I know? I'm just a nerd who hangs around with a puppet.
Peaceful Things and LOTS of love,
Saturday, November 3, 2012
Eric's podcast has a very raw and honest feel to it. He asks thoughtful and interesting questions that travel into topics many would try to avoid. The truth is that CF is a hard and individual disease. People do their best to survive and thrive through it. Sometimes that means navigating over some bumps in the road by making personal choices others might not agree with. Promoting CF Awareness from all aspects and opinions is something I'm very interested in. I believe in supporting anyone who has a honest, powerful and positive message even if it might not be all "duckies and bunnies". CF is all about that gray area. The highs and lows that make up the unique people in the CF Community. It's a big reason I agreed to be on the podcast. Eric is using his talents to provide yet another avenue to the CF Community to get our story out there. I'm happy to be a part of that.
I hope to take aspects of the CF Pioneers Podcast and incorporate them into the Joshland Unfiltered Podcast. I also hope that Eric with accept my invitation to come visit Joshland with Timmy G and I in the future. We just have to find the right topic.
FYI - Our conversation was so long Eric had to split it up into two parts. I'm sure he'll post the second part soon and I'll link to it on this blog post. It just goes to show you...if you put a mic in front of me, then I'll talk until the cows come home. Thanks for having me on, Eric. It was an honor, my friend.
Here's Part One:
Josh Mogren Part One - CF Pioneers Podcast
Thursday, October 4, 2012
• The 3 Foot Rule
• The ups and downs of Social Media
• CF Couples
• CF Parents
• Spouses of the CF Community
• Myths and Reality of Transplant and Organ Donation
• Transitioning from a Pediatrician to an Adult Doctor
• Relationships and Friendships
• Gender Roles
• And many, many more
We'll also have different reoccurring segments each episode to bring a little laughter and lighten the mood after some serious discussions.
Click here to listen to and subscribe to us on iTunes
Click here to listen to us on our Facebook Fanpage
Please don't worry. Moganko won't be a part of this podcast. He'll always be a kid-friendly character to teach wonderful lessons to families. I just needed an adult outlet like this blog to share my adult side too. I swear I have one!
Peaceful and Podcasting Things,
Tuesday, October 2, 2012
I hear that a lot when people feel they're at their darkest hour. It's a legitimate question. Yet, for every person that says "Why me?", I can find ten more people who probably have a better reason to ask that question on this particular day. For instance...
I couldn't breathe very well today and I started to feel sorry for myself. Then I logged onto Twitbook and saw a post from a friend who's waiting for a lung transplant and is losing the ability to focus on things for more than five minutes at a time thanks to their lack of oxygen.
Humbled back to earth, I took a moment to appreciate my frustrating but minimal struggle for breath, then hopped in my car to head to a meeting with a former teacher. While I was driving, I coughed up something akin to "Slimer" from the Ghostbusters and I naively snapped back into "Why me?" mode.
Internally wallowing in my self-pity, I sat down to talk with my wonderful teacher and mentor who I hadn't seen in almost two years. During our visit she told me about one of her former students—10 years my junior—who just had a tracheostomy (a tube surgically placed in the windpipe that gets hooked to a ventilator) because they've lost the ability to breathe independently thanks to Duchenne-type Muscular Dystrophy. My teacher said this person was still pretty positive despite all of their struggles.
Even though I still felt justified to say "Why me?" today, after I heard that story I felt pretty foolish about overly dwelling on my cough and my trouble breathing.
Life is hard sometimes and we all have "Why me?" moments. 99% of the time they're justifiable reasons and we have every right to feel the way we feel...for a moment. And I did. Then I thought of my friend waiting for lungs and I thought of this young person with DMD who's still fighting even after all the bullshit life has thrown their way.
Then I looked in the mirror and said:
"Say 'Why Me?', Josh. I dare you."
Monday, September 24, 2012
I was at the airport about 2 hours early for my flight out of Austin. That may seem excessive to some, but I hate the act of traveling and I've have had far too many nearly missed flights thanks to airport security, gate changes and my worn out body to risk anymore mishaps. It also gave me time to reflect on how traveling to and from an event is a journey in and of itself.
You see, I'm only "Josh from Joshland" for one day of my entire trip. It could be in Kansas City as the keynote speaker for CF Education Day at Children's Mercy Hospital,where I was warmly received with hugs and appreciation. Or maybe it's CF Family Education Day in Austin, TX at Dell's Children's Hospital where I'm proud to say that I received a standing ovation from the adult crowd and lots of giggles from the kids. During the day, I'm connecting with strangers and sharing my perspectives on living my life with cystic fibrosis. I'll cherish these experiences forever and I'm grateful for the opportunity to share my story and learn from everyone I meet as I try to be present for the gifts life gives me everyday. For instance...
I sat alone in my hotel room later on that night, listening to the rev of the air conditioner abruptly click on and off and I thought of how lucky I am. I know there are others with CF who want to be speaking like I am, but they don't know where to get started, they haven't been given an opportunity to or they simply aren't physically able to right now. What makes my story any better than theirs? Nothing. It's just a different path. All I tell them is keep working hard and putting yourself out there. Be uniquely you and the rest will fall into place...
I propped my feet on my upright HFCC treatment bag and waited at my gate as a bird that somehow made it into the building shot past my head and landed on the floor near me. It anxiously hopped along and then disappeared into the shadows. I laughed out loud thinking how all the kids I'd seen during my travels would've laughed at the way I jumped when the bird scared me half to death. I'm sure it would've been the same way they laughed when I danced around, played games with them and made silly faces in pictures we took with three feet between us. They saw that CF, though scary, could still be silly sometimes too.
To pass the time and calm my soul, I started listening to the homilies of one of my mentor's—Fr. Greg Tolaas. He was a gifted speaker and his message almost always revolved around love, being present, and being peaceful. He also happened to have CF, but rarely made mention of it unless it was pertinent to the conversation or a tool to deliver a greater message to all within earshot. I happened to click on one of his best homilies. In it, he said:
"A breath has not fully been breathed unless you have been grateful for it."
Those words resonated in my left ear while my right was listening for updates on our flight. And then...it happened again:
"I'm sorry again, y'all." the flight attendant conveyed with a weary drawl. "This flight has been grounded until further notice. Please get in line to be rebooked so you may reach your destination."
Like a herd of elephants, the passengers on my flight trampled and pushed their way in line just to be sent off in different directions. It reminded me of a really lame joke:
Being the very small and scrawny elephant that I am, I had very little trunk space to put my luggage in, so I ended up at the back of the line.
I listened to the passengers bitch and moan about the flight being cancelled and the airline being the spawn of the devil. I almost got caught up in it myself, until Fr. Greg's words got me to thinking...
Life is full of simple complexities. The act of breathing is involuntary, yet our bodies must do hundreds, maybe thousands of things to process that one breath. Carbon dioxide into oxygen that fliters through the lungs, and keeps our blood flowing so we can move our extremities and react to the electrical impulses that we send from our brains. Brains and bodies that keep our world going, fix our planes when they are grounded and allow me to speak at these events from time to time.
"I don't want to be on this plane!" she emphatically replied. "It was struck by lightning in June and has been fixed 4 times since then. It's never working. I.DON'T.FEEL.SAFE."
"So....things are good at the workplace right now, huh?" I awkwardly chuckled.
"Honey, the flight attendant told me she doesn't feel safe on the plane, so just in case we don't make it back...I love you."
Carly, subdued as ever, said. "Why would she say that? That's dumb. I love you and I'll see you in three hours."
Before I could make anymore calls, we were told to store our electronics and prepare for take off. As I stored my baggage in the overhead, my mind was racing. All of my big problems disappeared. I thought of my family and my friends. Most of all, I thought that I've had a very good life with only a few regrets. It all made me feel surprisingly peaceful.
The plane was half empty because so many passengers had been rebooked on other flights, so I had my pick of the seats. This time I chose the window seat. For simple complexities sake. For most of the three hour flight, I was looking out the window and feeling...calm. It was nice. I wanted it to happen more often. I wish I could figure out how to make it so. I'll keep working on it.
Clearly, I'm home and I'm safe. I'm lucky and I'm loved.
I hope you are too.
Monday, August 27, 2012
As soon as you saw the title of this blog post, I know you got a little curious. And now, as you look at the picture to the left, you're asking yourself two questions:
1. What are Josh's Pulmonary Function Test (PFT) numbers?
2. Why aren't they posted as a part of the photo?
Both are valid questions, so let me start answering them by telling you a story I've only referred to in previous blog posts:
It was 1991. I was a "tweenager" at the time and the routine was always the same. If my sister, Angie, happened to be in the hospital for one of her extended stays, then my mom and I would go visit her as soon as my CF clinic appointment was done. We would stroll into her room and I'd have a big smile on my face, so proud that my numbers were off the charts and that my health was at it's peak, despite being a teenage fool and skipping many a med and treatment.
Angie's first words to me were the same at every visit, spoken out of concern and curiosity: "Hi (insert sisterly insult here), how was your appointment and what were your PFT numbers?"
Without a second thought, I trumpeted my numbers to her with such a callous tone as if they were no big deal and took little effort to accomplish. Not because I meant it that way, but because at the time it was the truth and I took it for granted. Normally, Angie would say something encouraging to me, giving me a high-five and a big smile. This time she was silent, but she managed to force a smile to her lips. I thought nothing of it as I maliciously changed the channel on Angie's hospital TV from "Oprah" to "Chip n Dale's Rescue Rangers". Our visits continued on their normal path without another awkward pause, save the needless argument about what to watch on the boob tube.
Later on that evening, many hours after we came home, I could hear my mother's voice as one side of a conversation trying to soothe the caller on the other end of the line. She was talking to my sister.
"I know it's not fair. You should be as healthy as he is too. I don't know why that's not the case."
"Don't you worry about his numbers. You're doing a great job taking care of yourself. I'm so proud of you and so is your brother."
"Okay. I'll be there as soon as I can tomorrow. I love you, Totsie."
The next time I had a clinic appointment, Angie was thankfully at home, curled up on the couch watching a movie. When I walked in the door, she asked me that same question: "Hi (insert sisterly insult here), how was your appointment and what were your numbers?"
"They were good." I replied. "How are you feeling?"
Before we could reply, our friend Jim would always say:
"It's just a number."
Wednesday, August 22, 2012
By default, I'm the eldest grandchild. I'm certainly not the best writer of the bunch, that distinction goes to Molly and you'll find out why during what I'm sure will be a lovingly crafted eulogy you'll hear later. That being said, I can hold my own when it comes to delivering a message…especially when the message needs to make it all the way to heaven. So Grandma, listen up! This is a letter I wrote to you on behalf of all of your grandkids.
Not only was Angie the first grandchild, but she was the first girl born in the Mogren family after a VERY LONG drought. It's fitting that your first shot at being a grandmother would start off on a different foot all together than your time as a mother. The next part of your amazing journey...You wore many hats as a grandma and supported us in every aspect of our lives. You were an advocate of many causes, a cameo guest star on Bizzare Foods, an executive producer of a movie based on real events about terrorist bears on an airplane, a multi-performance attendee of every play and recital known to mankind, a front row cheerleader at hundreds of sporting events, a counselor of broken hearts, a healer of scraped knees, a booster of secondary education and you had an amazing lap where you told the best stories, both written and from memory. You were also the best candy sharin', soda purchasin', Christmas, Birthday and everyday spoilin', Minnesota Twins watchin', slot machine pullin', Florida visitin' , theme park takinest, meal feedinest, song singinest, bestest Grandma in the whole wide world.
But you were so much more.
You were sweet and wise. You were kind and generous. Grandma, you loved us so much and beamed whenever you talked about your grand babies. Plus, your heart was open to each and every person we ever brought over to your house, so you ended up having many more grandkids than just your special bunch. Those extra grandkids may not have been blood, but once they met you…they were yours forever.
The older grandkids got to experience something very special with you as adults. You, darling Grandma, were our friend. We asked you questions, we laughed and cried with you, we confided in you, and we got to know you as more than just our "bestest grandma". It breaks my heart that the younger grandkids won't be able to learn more from you and see first hand what a truly wonderful and brilliant woman you were and will always be. Don't worry, we'll do our best to share your spirit with them as they grow up.
Just last year, when my father passed away, I looked at you and asked why things happen the way they do. You looked back at me for a moment, paused your soap opera stories and said…"I don't know, Joshua. They just do and we just have to keep on living a good life."
So all of your grandkids—Josh, Molly, Andy, Chelsey, Jocelyn, Vincent, Corey, Kyle, Joe, Maggie, Katie, Alex, Carter, Macie, and your great grandkids Reese, Baby Addie and whomever else may come along—make you a promise here and now to keep living a good life while you cradle Angie in your arms as Grandpa, Steve, Gregory and the rest of our friends and family look on with a smile.
All of you watching over us from above.
Gramma, Grammy Grams, Gramma Mogs, Granny….You are loved and will be dearly missed until the day we meet again.
Monday, August 6, 2012
My non competitive nature also comes from the examples I see from the ultra competitive people in my life. A lot of them are just jackasses who have no humility and no tact. There's a difference between being confident and cocky. A confident person is in the zone before they compete and then embraces their competitors the moment the competition ends. A confident person embraces a win with pride and humility and handles defeat with grace. A cocky person feels the need to rub their success in other people's faces. Or maybe they like to antagonize their competitors with their words and actions rather than deal with their own issues. The only positive thing that kind of attitude provides is the bulletin board material that will be used as motivation. So, in that vein, I say "Thank you, jackasses."
I used to compare myself to others all the time. Thoughts like "Why don't I have those things in my life? That person doesn't deserve it. How unfair!" would constantly run through my mind. I worried myself sick—literally and figuratively—thinking about what I couldn't do or what I didn't have. It was bitter time in my life that I look back on and shake my head in shame. Too often in the world we get angry at others achievements in life. The CF Community is no different. For every person that's inspired by a public figure for accomplishing a goal in the face of CF, there are detractors who lambaste them every step of the way. These detractors perceive it as a personal slap in the face or a sign weakness if someone is telling them how they can reach their goals and do great things. What they perceive may not be the reality...
More often then not, when a public figure shares their message or story, it's simply an example of what you can do when you set goals and work hard. Do some come off as the cocky jackasses I mentioned earlier? Yes, but most of the time I don't think it's done intentionally or maliciously. Regardless if we're talking about exercise, professional or personal achievements, they share their stories because they care about you and they want you to do the best you can with what you're given just like they have. Does that mean you have to run a race, have a baby or work 50 hours a week to be a successful person with CF? No. It means they want you to set YOUR OWN GOALS and achieve them. Sometimes I wonder if that's the message that gets lost in translation.
I received an email recently that said:
I hate CF and I feel like I'll never be able to do anything because of it. How do you stay so positive and how have you been able to do so many interesting things?
I think my answer fits very well into this post, so I thought I'd answer publicly:
Despite what people think of me and my persona as a public figure in the CF Community , I am a HUGE WORRIER. I worry all the time about money, my health, my relationships and my future. The one thing that keeps me peaceful is that I always seem to survive whatever it is I'm worried about. Life has a way of keeping me going even if I end up with some lifelong scars. It sounds weird, but my track record of hardships has become my saving grace.
I think I stay positive because I try not to measure my success against other people. I try my best to understand why someone says or feels the way they feel and why they do what they do, but if I feel it's a negative, I eliminate it or them from my life. I don't have time to waste my energy on negativity. I ALWAYS cheer on my CF kindred spirits (whether I agree with them or not) who are living their dreams despite our illness, but I feel no pressure to be them or emulate them because that's THEIR LIFE. I see what they do and it inspires me to be they best Josh I can be. And that attitude has opened tons of doors for me.
So, I guess you could call me a self-competitor. I've worked hard to survive life and to achieve the goals I set for myself. Sometimes I fall short of those goals, but then I regroup and try again. I know there are somethings I'll never achieve, but as I've said before, I'd rather try and fail than fail to try. When those moments that hurt my heart pop up from time to time, I take a step back and count all the good things in my life.
A roof over my head.
Food on my table.
My family and my friends.
I have the medicine I need and the doctors to take care of me.
Everything else is insignificant.
Always remember: You're a unique and talented. You're loved and lovable. You'll find your place in the world. Be inspired by others, but believe in yourself. Those who inspire us can only give us incentive. The rest of the hard work is in our hands. Set realistic goals, believe in yourself and do your best to achieve them. After all, if you don't believe in yourself, then why should anyone else?
Peaceful Things and Lots of Powerful, Positive Energy,
Thursday, July 5, 2012
A few Monday nights past, my wife and I swayed down the Embarcadero near Pier 33.
"Can I offer you folks a ride down to Market Street? You just missed the cable car and it's a great night for a ride." the young buck chattered, pedaling swiftly and going nowhere.
"Actually, we're really good. I've had a couple beers, so I can't feel my legs and feet right now. We may pay for it in the morning, but I think we're gonna hoof it." The cabbie bid us adieu and disappeared into the night, save his blinking red tail lights and high pitched bell that made me want ice cream in a weird Pavlovian way. I looked down at the sidewalk and began trying with all of my might not to break my mother's back on the cracks below me. After saving my mother from her unknown fate for several minutes, I looked up at my sweet wife and babbled:
"Sorry, sweetie. I know we should've taken that ride because we've been walking all day, but I wanted to walk with you tonight. I want this to be one of those nights we look back on when we're older and smile. Years from now, when my body won't let me walk anymore, I don't want to say 'I wish we would've walked that night in San Francisco.' So we're walking. And we're holding hands. And that's that." She rolled her eyes and kissed me. It was nice.
This state of euphoria was yet another realization that I am doing good things with my life. I'm making people happy. I'm sharing my CF story and my thoughts on life to help the CF Community in whatever way I can.
This particular trip was about two things. The first was being the guest speaker at the A Night of Wine and 65 Roses event benefiting the Northern California Chapter of the CF Foundation. I hope my words were one of the reasons the night was so successful. I did my best to speak with passion and honesty. I believe when someone speaks from their heart, the audience can feel that and the imperfections melt away. I try to be real because that's what CF is...real. It was a special evening for me and I have Helen, Amanda and the hard working staff at the Northern California Chapter of the CFF to thank for it. If you're in the area next summer, I highly suggest you make it there. Love to you all.
The second was about connection. I was a bit embarrassed by the wonderful reception we received the moment we arrived in Petaluma. Carly and I loved the time we spent with CF Families that we'd only seen in pictures. They went out of their way to make us feel the same way Moganko makes their children feel: Special. We also met up with a few friends (What up Rosie Posey, Leeners and Jess!) and strengthened our already strong relationships. I love each of them with all my heart. We made memories from this trip that will last a lifetime. The kind of moments that erase the "shoulda, coulda, wouldas" and turn them in to "dids". I'm truly a blessed man. It doesn't take a moonlit walk down the street in San Fran to realize that.
I wanted to post the entire speech, but it's 16 minutes and that made YouTube angry for some reason. So I posted a snippet of the speech instead.
Look for me as a guest speaker at CF Education Days in Missouri, Texas and Virginia in the upcoming months. I'm looking forward to many more experiences full of love, honesty and humor that I can cherish for the rest of my life. Thank you for everything in advance. My life makes my heart happy.
If you'd like to have me speak at your events, please email me at: firstname.lastname@example.org
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