Friday, March 25, 2011

Let Me Relax...

I pride myself on being appreciative of everything in my life, but lately I've noticed the things I took for granted while I was younger and the things I might miss out on as I get older...

If it's not one thing, it's another. If it's not a lung infection, it's muscle spasms in my cerebral palsy-addled leg. If it's not intestinal blockages, it's complications from mal-absorption of fat-soluble vitamins. I constantly need to evaluate what issues to focus on right now, what can be dealt with later, and come to grips with the reality that parts of my body may eventually need to be replaced. I feel like I'm a used car approaching the 100,000 mile mark.

Even relaxing is hard work. Traveling—which used to be a snap—isn't getting any easier on me. I love going on vacations with family and friends, but I hate the act of traveling. The scheduling, packing, driving, flying, deadlines. I HATE IT. It damn near kills me. Once I get to my destination I'm usually good to go, but my last few trips are showing me that there is a cost for joy and pleasure. Change of diet and of climate send my lungs and my stomach for a loop. While everyone else is by the pool enjoying their vacation, I'm doing another therapy, trying not to cause a ruckus or draw attention to myself and stopping the antibiotics from helping the sun scorch my skin. I'm lethargic and frustrated. I'm high maintenance. I am not myself. I am with friends who care, but I feel all alone because of my health. CF doesn't take a vacation, even if I do. Still I appreciate the fact that my body is well enough to travel because I know several people with CF and other illnesses that would give ANYTHING to be where I've been...complications be damned.

I also see families on their vacations spending time together. Little girls on their daddy's shoulders and little boys wrapped in their mother's arms. I see the joy it brings, but I also see the hard work it takes to get there. My wife and I are well aware of what we are giving up if we don't have kids, but we also know we are gaining time together. When my body breaks down on vacation I automatically feel thankful we don't have little ones to worry about. We don't have to explain why Daddy is napping in the bed on vacation instead of playing in the pool with them. I have friends with cystic fibrosis who are phenomenal parents and wouldn't trade that gift for anything in the world. I say more power to them. It's a beautiful thing to see and I envy you with every picture you share and every story you tell. I just don't think we're willing to make that same choice. That makes me so sad, but so peaceful.

When I think of where I've been, I often wonder where I'm going. As a man and as a CF patient.
I'm excited and scared, but that's what makes life worth living.

So, if I might take a moment...

"Please spirits, fates, Gods, and angels: Let the hard times be few and the good times be many. Let the breeze of peace cool me when I'm hot and let love warm me when I'm chilled. Let my body work without the pain and let my mind be soothed by the tranquility that surrounds me. Let me appreciate what I have and forget what I do not. Let me relax...without the hard work."

~ Josh from Joshland


Peaceful Things,

Josh

Sunday, March 13, 2011

Interesting Habits & Phenomena Of Blogging


I've been blogging for some time now and - since I have writer's block the size of Mount Rushmore - I thought I'd share some insights about the experience so far:

• I've noticed a rise in the quality of my story-telling from when I first started. Unfortunately, the grammatical and punctuation errors remain. Note to self: take breaks, let your wife be your editor, and stop using so many damn commas! They breed like rabbits!

• I find it interesting to see which W2J stories or blog posts are the most popular. I often say aloud "Why did people like that story?" Was it because I included a video? Was my story-telling better in one story or another? Was it the topic choice? Perhaps I should entice you with a free box of steaks if you read the posts I LIKE the most...Hmmm? One day I'm going to write a ludicrous title like "How Cystic Fibrosis Treatments and Watching Chimpanzees on YouTube Increases The Dexterity of Your Toes" and then in the body write "GOTCHA!!!" Just to see how many people I fool.

As a matter of fact....



• I find myself checking my Blogger account for comments quite often the first few days after I write a new post and I'll admit I get a little bummed when I don't have any. It's not like I cower in the corner, sobbing and screaming "PLEASE VALIDATE MY HUMOROUS OR HEARTBREAKING ANECDOTES!", but your comments do give me the warm fuzzies. I appreciate them and I thank you for taking the time to write them.

• I wonder if people click on the links I add to my stories? Sometimes I click on those links just to make sure it's headed to the right place. The last thing I'd want you to do is end up at "Wally's Freaky Kangaroo Observatory" website instead of "CFWally's" blog post about CF. I know from experience. Not about the kangaroos, but about the random links...nevermind.

• When I write a blog post/ story, sometimes I try too hard to be funny and totally miss the mark. Other times, people laugh at parts that I never intend to be funny. You are all a bunch of weirdos. Just kidding...you are all very nice weirdos.

• I recently confirmed a suspicion: Some of my closest friends and family rarely read my blog.
I've always suspected this to be true. I think some can't handle the CF parts, some are just too busy, and some have heard the stories a million times. Perhaps the most common answer is "Why read it when we lived it with you?" Good point, my friends. I understand completely and I'm not mad at all. On the other hand, people from all phases of my life have found my blog and complemented me on my honesty and my writing style. You should see some of the touching letters and emails I've received. You know who you are and I am saying thank you. Love you all regardless if you read this or not.

• I worry too much about offending people when I write my stories. If people don't like what I write, then they should stop reading it. I'm not going to start writing malicious and slanderous things, but if I find something amusing I'm going to post it from now on.

• As an avid blog reader, I don't enjoy when I see people trying to make their blogs seem bigger and better than they are. Don't do those things. It makes you look petty and small. Come by your readers by the content of your character and the creativity of your posts, not false pretenses.

• If you like something someone else writes, link to their blog and give them some credit rather than reposting what they said on your site. They should extend the same courtesy to you. That way you''ll share readers which is a great and fair thing. At the very least, you should ask permission to post someone else's work.

• I'm having writer's block right now, which usually means I'm preoccupied with other issues. When I have writer's block, I get a little nervous. I need suggestions for stories. Please comment on this post if you have any ideas.

Finally....

• I have 4 main goals for this blog:

1. To write my story in my own words and publish a book about my life with "unpublished stories". Ooooooooooh. Aaaaaaaah.

2. To make people happy. That's more of a life goal.

3. To promote CF Awareness. When I started blogging this was not a goal of mine. W2J just kinda grew into a "CF blog". I had no idea about the power of the CF blogging world, but I've happily added this goal to the list. Thank you for reading my stuff, CF Community.

4. To continue to book speaking gigs that help people struggling to find their place in the world. I've done a handful of these gigs and I've heard nothing but positive reviews. I hope they are telling the truth because my hope is that if one person hears my story - the story of an average guy who does the best he can with what he's given every single day - and believes in themselves and their future because of it, then I will leave this earth a happy man.

Thanks for everything, Joshland Readers. I'll keep writing as long as I can. I hope you'll keep coming back.

Peaceful and Thoughtful Blogging Things,

Josh

Peaceful thoughts go out to anyone and everyone affected by the devastation in Japan. Here are several ways you can help out:

Japan earthquake and tsunami: How to help

Tuesday, March 1, 2011

Diminutive Driving Determination


Angie excelled at any subject she studied and driver's education was no exception. She had that driver's ed manual memorized from front to back. If it were a category on Jeopardy! , she would have been the annoying person in the room answering Alex Trebek in the form of a question before anyone else finished reading the answer. At that point in her life, going to class every week was not easy on her, but she was determined to reach her goal. Earning her driver's license would give her the freedom that her body never did every time she hit the road.

If her written test was a walk in the park, then her behind-the-wheel training and her eventual road test were like swimming in the deep end without her water wings. Standing at a diminutive 4' 9" (though she would claim to be 4'11"), operating any vehicle up to the standards of the DMV was a tall order...pardon the pun. My family gave Angie every opportunity they could to let her drive, but the majority of her hours behind the wheel were at the helm of a late 60's/early 70's banana yellow Buick LeSabre with my mom in the passenger's seat gripping the "holy shit handles" so tightly that her knuckles turned bright white. When the irresistible force that was my sister met this monstrous vehicle affectionately known as "The Dinosaur", something had to give and it sure as hell wasn't going to be Angie.

Angie used everything she could to her advantage. She'd peer over and/or through the steering wheel of the "Tyrannosaurus Wreck', adjusting her mirrors to the perfect angles and shifting her seat to the point where her feet, housed in thick-soled sneakers or 6 inch heels, were barely grazing the pedals. Two fluffy throw pillows cradled her back and rump for optimal driving performance. She looked like she was strapped into a rollercoaster, she had so many pads around her. Her determination to succeed far outweighed the disdain she had for her small stature. She wouldn't let ANYTHING stop her from getting her license!

I wasn't super supportive of Angie's driving, mostly because it was like being in prison. Mom and I had a conversation prior to Angie getting her learner's permit where she asked me to be on my best behavior and that if I couldn't say anything nice to Angie, then I shouldn't say anything at all.

You see, when you took a ride with Angela: Student Driver, there were a few rules:

1. We observed radio silence.

2. I was not allowed to make smart ass comments or laugh at my sister while she was behind the wheel. In fact, not a peep was to be heard from the backseat, as it could cause our demise.

3. If I absolutely HAD to make a sound, only requests for a bathroom break or food stops were tolerated.

You can imagine the hell I was being put through. I'd have rather been punched in the nether regions several times in a row than be a passenger in that car. I was petrified to climb into the belly of that prehistoric beast no matter who was driving, but when my "fun-sized" older sibling was behind the wheel I felt like I was a live crash test dummy. It took every ounce of energy I had, but I followed the rules like a trooper.

Joshland Note: I remember being a trooper, but I wouldn't be surprised if I was a whiny little snot. Anyone with a sibling knows exactly what I'm talking about. "Selective memory" is a magical skill, people. As long as it is used for good, then I suggest you use it whenever possible. :-)

My face turned ghost white when I heard the click of the seat belt and growl of the engine. When Angela turned her head to back out of the driveway, I feigned a pitiful "I'm being supportive" brotherly grin. The scowl that Angie shot back at me said "I hate that you are in the car right now and, for God's sake, brush your teeth before you leave the house!"

We clomped onto the road, swallowing what seemed like a lane and a half as we headed toward the on ramp to the highway.

Oh my God, the highway.

My sister can't see over the steering wheel and we are about to merge with semis and road raging pick ups. I started praying to every god possible as "The Dinosaur" roared onto Hwy 5. When I opened my eyes a few minutes later, I was pleased to notice we were still breathing! Not only that, but Angie was kicking ass! She was changing lanes with ease, never hesitating to honk if needed, and exuding the confidence of an experienced driver. I was very proud of her and took a sigh of relief while we cruised the highway on the way to the mall. (Where else would a sixteen year old girl want to drive to?)

I decided to cash in one of my "get out of jail free" cards and request that my "chauffeur" swing through the nearest fast food drive-thru before we headed to the mall. After all, I was famished from all the praying. It's hard work being a brother. This was a first time experience for Angie, so even though it was my request, she happily obliged anyways.

Pulling into the drive thru lane was simple enough. We placed our order and started to make our way to the pay window. This is where things got a little tricky. You see, driving "The Dinosaur" in a straight line was hard enough, but when your vehicle has the turn radius of a parade float, a drive thru is the last place you should try to navigate your way through. We got stuck a quarter of a way between the building wall and the bright yellow pillar. Angela's calm demeanor had turned to uncontrollable laughter. Red-faced and flustered, she shifted gears back and forth from 'R' to 'D', inching around the corner ever so slighty with every cycle while horns were honking and people were ignorantly yelling out their windows. She even snickered while ordering me to stop giggling in the back seat. I couldn't help myself. We'd been stuck in the drive thru for what seemed like an eternity. Even my mother was holding her sides from busting a gut. A few layers of paint and scraped wheel wells later we made it out alive and pulled over to park and eat our cold burgers and fries while we cranked up the tunes and enjoyed a rare moment of normalcy.

Angie passed her driver's test with flying colors a few months later and it was one of the proudest moments of her short, but memorable life. You should have seen her face light up when she showed me that yellow slip of paper. "Told you I would pass, you dork!" she said as she bolted out of the room with her tongue stuck out in my direction. I was annoyed and proud of her too.

DID YOU HEAR ME, ANGIE?!? I WAS PROUD OF YOU, BUTTHEAD! :-)

This story exemplifies the person Angie was. Full of life and perseverance, Angie tried her best even in the face of adversity. Please remember to appreciate the little things in your life that you might otherwise take for granted. And remember: somewhere out there is a young lady just like Angie, sitting on pillows and beaming with pride because she just got her license.

Heaven help us all.

Peaceful Things,

Josh

What'd You Think?

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Peaceful Things ~ Josh
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