Monday, May 24, 2010

Joshland Goes Hollywood

Fresh out of "The Joint", I boarded a plane headed for California to visit my cousin, Andy. This was something we had planned months before all the hospital garbage happened. It was a weekend full of movies, video games, late morning cafe breakfasts, and driving around L.A. with one of my best friends. Unfortunately, because I wasn't at 100%, I was pretty lame. I was so exhausted that I couldn't make it past 10:30 without nodding off, which is when things in L.A. are just getting started. I wish I'd had my normal gusto, but IV and oral antibiotics just take it out of you. Still, this mini-vacation was just what I needed because it served a plethora of purposes:

First of all, I got to see Hollywood, CA. I'm a movie buff by choice and circumstance, so its only natural for me to check out the "Magic Store". Being in a place where everyone has the dream of being "somebody" was an interesting experience for a Minnesota boy who keeps things pretty mellow. There are some strange cats out in Hollywood and that was entertainment in and of itself. On a side note - I also have a goal of visiting all 50 states before I kick off, so I am one state closer. 18 out of 50.

Secondly, Angie was there with me. She would have LOVED to go to Los Angeles! Seeing memorials of Marilyn Monroe in person instead of just pictures on her bedroom wall and the dream of being - and I quote - "a six foot blonde with big boobs". Seeing "The Tonight Show" live in the front row rather than on her 12 inch TV while hooked up to her third dose of IV antibiotics would have been a top priority. Spinning the Price Is Right Wheel backstage at CBS Studios (if she could have gotten it around. Damn, that sucker was heavy!). It would have been an amazing experience that she would've treasured, but it wasn't meant to be. While we were sitting in the cavern that is Grauman's Chinese Theater, I told Andy that everything I do always has an "Angie Purpose". Trips, Moganko, my house, my life. I'm living the life she wanted to live AND the life she wanted me to live. She is a great reminder if I ever need a kick in the ass. Live for Ang and for myself. Miss you, sister.

And last but not least...Andy. When I talk about how important having dreams - big and small - are, Andy is a great example. All he's ever wanted to do is make movies and make people laugh. It took a few years for him to build up the courage to move out there, but with his determination and a little encouragement from his family and friends he made a big leap. Regardless if he ever makes it big, he's already successful in my eyes because he had the guts to follow his dreams. Kudos, M'boy!

We've been close since we were little kids, always causing trouble and having fun. I like to say he is like me with the volume turned way up, but the truth is that Andy lives in a world of his own full of creativity and off the wall humor. Sometimes that's the problem. He's always "on" so people rarely get to see the other parts of his personality. On the last day of our trip I challenged him into answer a single question seriously. The answer that I got was pretty special. At least, I appreciated it and I think the people that know him will find it enlightening. Here is that little interview:

In addition to his movie making talents, Andy composes music for all of his film projects. I utilized that talent during my trip and the result was (and hopefully will be) the foundation for a new song made especially for those CF kiddos - young and old - out in "Joshland". Stay tuned for that. Thanks for your help, Roo. There will be a lot of happy families thanks to you.

I'll leave you with this trailer for his web series "Son of A Pitch" and a link to his website for all of the episodes and his other zany antics. THESE ARE NOT APPROPRIATE FOR YOUNGER VIEWERS. Love you, Andy. You are one of a kind. Thank God!

Peaceful and Magical Hollywood Things,


Sunday, May 16, 2010

Making The Best of A Bad Situation

Hemoptysis ~ the coughing up of blood from the respiratory tract.

I saw it hundreds of times from my sister's bedside before I dashed away to get a Kleenex box while she cried from fear and from pain. I've heard of it thousands of times from CF friends, paramedics, doctors, and on televisions shows. It was a word. Until this weekend...

I felt just fine when it happened, but sometimes that can be deceiving. A lot of things could have caused this: allergies, exposure to second hand smoke for a few hours a month ago, stress, and just plain ol' cystic fibrosis. Any one of these can trigger issues, but add them together and......KABLAMO! I'll spare you the gory details because what you are imagining is probably just as bad as anything I could ever write on here. I will tell you it happened three times over the course of a day and was a pretty good indicator that something was wrong. You know what's funny about it? I wasn't scared. I was more upset over ruining a perfectly good pair of cheap jeans and having to put off taking the dogs for a much needed walk than I was over coughing up A LOT of blood. Things like that don't really scare me. I'm not trying to sound tough, but I guess I'm desensitized to all this garbage. I don't know if that's a good thing or a bad thing.

Getting sick is inevitable thing when you have this disease. It's how long one can make it between hospital stays that's the goal for most CFers. I figured I was due to go in for a "tune up" sometime soon, but I wish I could have had some warning. All of the other times I have ever gone into the hospital, they were predictable and I literally packed a bag before my wife and I headed to see the doctor...hoping for oral antibiotics, but preparing for a short stay in "The Joint." Not this time. I figured the doctor would have me pop some extra vitamin K and I would be on my way to a fun weekend that ended with the Cystic Fibrosis Great Strides Walk. No such luck, says the doctor. I was in for observation until further notice.

I missed everything this weekend. I cried a little bit. I swore and I snapped at people. I was so out of character because I just hated to see hear the sound of worried voices from my friends and family. I hated to leave them without answers because I truly didn't have any. I hated the way cystic fibrosis threw my whole life up in the air for no good reason other than because it could. Most of all, I hated the look on my wife's face. So brave, but so anxious as well. It's the same look I have right now. So I had my moment to be pissed. I had to allow myself that luxury. I'm human after all.

Once I got it out of my system, I was fine. I took advantage of the situation. I watched some Twins games (we don't have cable), caught up on some movies, wrote some stories, and just relaxed while the medicine did its job.

This bump in the road also gave me the gift of time. Time to send a "Moganko Message" to my little CF buddies out there who need to smile. I hope you'll take the time to watch this episode, share it with friends, share it on your blogs, and share it with your children. It's by far my favorite thing I've created with my little orange buddy. It shows that I'm NOT invincible. I DO go in the hospital just like they do and that I get through the tough things in life with three things: Love, humor, and honesty.

Cystic Fibrosis...I hate what you do, so I won't let you win. Even if you take me down piece by piece. Kiss my ass...I'm taking you down with me.

Thank you to my friends and family for the well wishes. I'm on the mend and I love you for the love you give me. Now feel free to laugh away at this video.

Peaceful and Positive Things,


Wednesday, May 12, 2010

What is Inspiring?

The term inspirational is thrown around a lot. So much so that the meaning of it gets lost in the shuffle. In a world filled with so much negativity and hate, people cling to these rays of light that peek through the darkness. The whole concept raises some questions for me...

Why does it often take a tragic situation or a life altering event for people to come out of the woodwork and support one another so openly? It's a shame that we miss these special people when their stories were just "average". That we don't open our eyes to the remarkable until the end instead of the beginning. This makes me sad.

What makes something inspirational? I'll use myself as an example. I've been called inspirational more times than I can count, particularly in the last year because of some of the things I've been graciously asked to participate in. I can't imagine how people with a much broader audience than I have deal with this admiration because I feel like the amount of admiration that I've been getting has been so overwhelming and undeserved. There are so many other people more deserving of your praise. Believe me, I'm humbled and thankful for it because I'd rather have people love me than hate me, but I've got news for you: I'm just a regular guy living my life one day at a time. I do what I do because I enjoy it and it gives me purpose. Does that make me inspirational? I don't think so. I do my best to be a good person. Isn't that how everyone should be? I feel guilty because I wish I could do a better job for myself and for others. I know inspiration is a subjective thing and perhaps I have self esteem issues, but that's how I feel.

Finally, why is admiration so black and white? Shouldn't praise transcend our differences? What about those who deserve praise that never get it? For instance:

I'm inspired by those that risk their lives to help others: soldiers, police officers, firefighters, etc...They have my utmost respect.

I'm inspired by people who go outside their comfort zone. The ones take the moment to listen. Ignorance comes from fear. The moment people figure out how to understand one another on a respectful level, then the world will be a better place. People don't have to agree, but they should at least attempt to put themselves in someone else's shoes. Be good to one another and respect each others right to exist without persecution.

I'm inspired by those that sacrifice certain things in their life so their loved ones can be happy. They go without because they want to, not just because they have to.

I'm inspired by people who are well off, but share their success with others. I'm not just talking about money either. I'm talking about their time, their possessions, their blueprint for success, and their connections so that others can reach their own goals.

I'm inspired by the eight year old boy who used his Make-a-Wish to give food to the food shelter for no other reason than "just to be nice."

I'm inspired by a woman who forgave the young man that killed her son. Together this mother and and this young man share their story with others to help those who've lost someone through violence. They are stronger than I will ever be. Forgiveness is a noble gesture and love is even greater.

I'm inspired by people who do good things anonymously and with great love. It's a truly awesome person that gives to others without the need for recognition or praise.

I'm inspired by my grandmother who walks on the treadmill - bad knees and all - in her 80's. She doesn't have to. She wants to because she wants to be here for herself and her family.

Sometimes the crosses we bear aren't visible to the naked eye. I'm inspired by the people who get up every morning whether they have the mental and physical strength to or not. I love each of you...even the ones I don't know.

I'm inspired by my friends and family. Without them I am nothing.

I'm inspired by my wife who loves me and reminds me to be Josh and not just "CF Josh", because that is the man she fell in love with. I love you too, my sweet wife. (She just threw up in her mouth a little bit as she read this. :-) )

But ultimately, I believe deep down that we have to inspire ourselves. If you don't like the person you see in the mirror, it's up to you to make those changes so you do like what you see. No one is going to do it for you. Change what you are able to and do the best you can with what you can't. I try to live that way every day of my life. I don't always succeed, but damn it, I try. You know why? Because dreams are worth having and goals are worth the effort.

INSPIRE YOURSELF. You'll be glad you did.

Peaceful Things,


Friday, May 7, 2010

A "Grand" Mother's Day Story: A Tribute To "Sparky" Carmella

This is a story about a woman I really didn't know. When she was with us I was still a child living in my own little world, so focused on my activities and my problems. These things were paramount in my life. I wish I would have been a little older because I missed the opportunity to cultivate a friendship with my grandmother on my mother's side, Camella, AKA "Sparky"...

She was a renaissance woman at a time when they were scarce. She worked hard to better herself. She went to college for bookkeeping, stenography, and teletype operating because she believed that everyone should be able to make an honest living for themselves. On top of that, she was able to take care of the household chores with some help from her daughter. But it was the love for her family that was the foundation of her life. Even when she lost her first husband - my biological grandfather - in a car accident, her faith and love of her family never faltered. So when I decided to write about my grandmother, I went right to the people that knew her best: Her husband (and the man I've know all my life as "Grandpa") and her daughter:

"Your grandmother loved you. She wanted the best for you. She was always so proud of you and always looked forward to your visits. Whether they were for moments or for hours they were her favorite things. She shared your life story with others because you were so precious to her." ~ Grandpa

"Your grandma was there for our family from day one. She came to visit you every weekend you were in the hospital as a baby. She visited every week to help me prepare medicine and learn how to do your bronchial drainage therapies. She always got you socks and underwear for Christmas in addition to a "cool" gift, she always read to you, and she was always there to listen. She was my mother and I modeled my nurturing after her." ~ Mom

The more I heard about her, the more I remembered her passion. She was so sweet and caring. Whenever she saw me, she made a mad dash in my direction just so she could give me a big hug and pinch my cheeks until they turned bright red. Grandma could cuss a blue streak if something irked her right way. I rarely heard it myself, but the stories of it are legendary. I'd like to think this is where my fondness for cursing came from, but I could just be a potty mouth at heart. She would take me out for my birthday to Old Country Buffet, where I could stuff my face while we talked about life. There was no dumbing down of topics, just a filter on the number of them. It's something I always tried to emulate when I speak to children. Grandma knew that honesty always worked, no matter what age you were.

The best example of this was our final conversation. It was, to put it lightly, intense. We came over to visit so my mother could help straighten up her house. Grandma lacked the strength to do this on her own because she was nearing the end of her fight with leukemia. When Grandma called me downstairs for a chat I took notice of her weakened state. Her body looked frail and her hair was spotty, but her soul burned strongly behind her bright blue eyes. She told me in no uncertain terms that her life was ending. She would not be here to comfort my mother while her granddaughter was dying. That would be my job.

"It's up to you to be the man of the house and take care of your mother. She needs you and you need her. Your sister needs you too, Joshua. Promise me you'll take care of things when I am gone?" she said.

Even though I was fourteen and I didn't fully understand what was happening, I accepted the responsibility. This was a serious request. She was asking me to make a transition. A transition from being her grandson to her friend. Growing from a boy to a young man. Whether I wanted to or not, I needed to do this for her. I gave her a big hug and told her I loved her, then I headed upstairs so she and my sister could speak alone. I don't know what was said between the two of them, but I know from Angie's own words that she and Grandma had bonded because of their impending futures. They both passed away within days of each other only a few months later.

Grandma...I hope I've lived up to my promise. I love you and I miss you. I wish I could have grown as close to you as I have your husband and my other grandmother. How special it would have been to really get to know you in my adult years. I think of you often when I look at my wife. She's got bits of all the strong women I grew up with mixed with her own marvelous personality. I think you'd dig her. And, of course, I see you in my mother - eccentricities and all, which is a good thing.

To all of the mothers, "mother-like" figures, and children out there reading this: Be thankful for the time you spend together. It can never be replaced.

P.S. - Check out my Mother's Day post from last year. :-)

Peaceful and Happy Mother's Day Things,


What'd You Think?

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Peaceful Things ~ Josh
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