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Showing posts with the label cystic fibrosis

Coldplay, "Fix You"

The Indians are about to begin the American League Championship Series, and I've been listening to a lot of Coldplay for something I'm writing. Whenever I hear the band, I instantly think of "Fix You" and this post I wrote for Popdose 5 years ago. Here are two phrases I never thought I’d say in this year: “The Indians swept the Red Sox” and “Cleveland is in first place.” Hope  springs eternal each spring when Major League Baseball begins its season. We fans are optimistic even when our team is mid-market and does not have the gargantuan payroll of ESPN favorites like the Yankees and Phillies. A scrappy group of aging vets and wet behind the ears youngsters can show the world that you don’t have to be the richest team to succeed; you can develop talent in the farm leagues and make savvy trades. Yeah, that’s what we fans of smaller market teams tell ourselves each year before the first pitch is thrown. Springtime is a season full of hope in our household, no...

It's never too late to donate. And if you hesitate, think of this guy!

Hi. The Valencia Great Strides walk for the Cystic Fibrosis Foundation is 10 days away. We're inching toward our fundraising goal, but we still need help. I know what you're thinking, because heck, I've thought it myself at times. "I don't have a lot of money to give, so how can it possibly help." My friends, every bit helps. I will use Bernie Sanders as an example.  Not his politics, because this is definitely not about that, but the success of his campaign. Regardless of what you think of Mr. Sanders, he has raised A LOT of money through small donations. People with limited means believe in his cause and give what they can. THAT is what I'm talking about. Most of the money that the Cystic Fibrosis Foundations takes in goes directly into research. So... every bit counts, no matter what the amount. This year, Julie's school held two bake sales, selling cookies and Rice Krispie treats. They sold for a buck each. She doesn't work at a large school an...

Great Strides update 2015

The final amount that Team Jacob raised this year was over $10,000. A stunning achievement. Furthermore, Sophie and Jacob were both in the top five for teens/kids raising money for the walk. The Valencia walk raised over $70,000. That's staggering. Valencia is not a large city, yet our community continues to pull in some big bucks to kick CF's ass.  If you're reading this, thank you for your support and prayers. If you donated, don't worry, chill, cheetah, your thank you note is coming. I made a promise and I will stick to it.   I never realize how stressful the walk is until a week or two after it's done. I feel a weight off of my chest. I've become so accustomed to suppressing my fears and sadness over CF. Yeah, that ain't a good thing. Thanks again. Aloha

Super Heroes and a Real Super HERO

Jacob and I went to see the latest Avengers movie yesterday. He thought it was awesome and had a hard time deciding which he liked better than last summer's Guardians of the Galaxy . Before our screening, there were no less than three super hero movie trailers! This wave of comic book movies has no end in sight. Watching the film, though, I couldn't help but think that Iron Man, Captain America and Hawkeye don't hold a candle to the guy who was sitting next to me. While the stories of extraordinary humans with mighty powers are fun and a great way to escape, the real hero in my life is Jacob. What he lives through on a daily basis is more than any kid should have to endure. I wager to say that Bruce Banner wouldn't complain so much about his anger issues if he was living with cystic fibrosis. CF is a pain in his tookus. Besides the obvious traits of the illness, here's some of the stuff he has to put up with. He misses school because his chest hurts or he's coug...

Flashback Thursday: Don't Be a Turkey!

Here I am in the 90s, when I worked for Tony Gardner and never wore a belt. I was also a bit , ahem, skinnier back then. ANYWAY, I post this pic and ask if you've considered donating to Great Strides this year. You haven't? Well, don't be a turkey. Help change the lives of thousands of children, teens and adults living with cystic fibrosis, like this guy... Jacob thanks you. Here's the link: Jacob's Donation Page Aloha

I have been a jackass; don't hold it against my son

I know. I've been terrible at sending "thank you" responses to all of you awesome people who have donated to Great Strides in the past couple of years. Please... please, please, please... don't let that affect whether you'll make a donation to Great Strides this year. Want to be pissed at me, that's cool. I deserve it. I've been a jackass and let a general malaise hover over me like a storm cloud that refuses to rain. But this isn't about me. It's about Jacob and the thousands of other children and adults living with cystic fibrosis. What can I do to make it up to you? Want a short story? I'll write you one. A short film? May take a little time, but consider it done. A copy of King's Highway ? Send me your address and it's in the mail. A copy of Basement Songs ? Okay. I love my son more than any words on a blog can get across. I do not have thousands of dollars to donate to the Cystic Fibrosis Foundation to continue their groundbreaking...

Great Strides 2015... with an AWESOME video

Jacob has pneumonia again. He has a cough that causes him to double over, shaking his entire body. He's had trouble sleeping through the night thanks to the cough. Well, thanks to CF. A simple cold can quickly turn into something else with CF kids, as it did in this case. But Jake is a champ. Although he's in a lot of pain, he still manages to  crack jokes and make us laugh. I bring this up as a segue into the following announcement: The Cystic Fibrosis Foundation's Great Strides walk for Valencia, CA (which is where I live) will be on May 9, 2015. This post is the beginning of my fundraising for Great Strides. Here are some facts that you probably know, but I'm going to repeat them: Cystic fibrosis is a life-threatening illness that effects the lungs and digestive systems of people born with it. In people with CF, the body produces a thick, sticky mucus that clogs the lungs and obstructs the pancreas. Because of the mucus in the lungs, bacteria likes to grow and wrea...

Basement Songs Rewind: Coldplay, "Fix You"

The 2015 Valencia Great Strides is a little over a month away. Among the things I want to do this year (including personally thanking everyone who donates-- sorry!) is repost some of my CF related posts and columns from the past years. This year is kind of exciting because Jacob and I are working on a special fundraising video that we hope to have completed this weekend. Fingers crossed, Anyway, here is a 2011 BS entry for Coldplay's "Fix You." Every time I hear this song, it's hits me with an emotional wallop, especially the live version. This entry ran in April of that year, so there are references to the Indians already playing winning baseball (they would finish 80-82 that year, bleh). Thanks for reading. Aloha Here are two phrases I never thought I’d say in this year: “The Indians swept the Red Sox” and “Cleveland is in first place.” Hope  springs eternal each spring when Major League Baseball begins its season. We fans are optimistic even when our team is mid-ma...

Journey "Frontiers" Reimagined

It's no secret that I'm a diehard Journey fan. Besides growing up listening to their music, the song and story behind their hit from the Vison Quest  soundtrack, "Only the Young," has a special meaning to me and the cystic fibrosis community. I frequently go back to their studio albums featuring Steve Perry, although I tend to listen to the first four with Perry ( Infinity, Evolution, Departure  and Escape ) more than the others. Although 1983's Frontiers  came out at the peak of their world domination (stadium tours! music videos! two video games!), and although I saw them for the first time on the tour to support that album, I've rarely listened to the LP in the past 32 years. It's not that there are bad songs on Frontiers (mind you, I'm speaking as a Journey fan; Journey haters keep your snide comments to a minimum), it's just that the album is so front heavy with the hits and ballads, and there is a cold bitter tone throughout the record, that ...

Great Strides 2014 was a HUGE success!

Before I get into any more news about Legendary and when it will begin posting, I MUST give an update about this year's Great Strides. Team Jacob raised over $9,000, and the Valencia Great Strides walk has raise $112,000 to date! That's frickin' amazing. Our small community raised a butt load of money!! The walk day was hot and wonderful. This year we were in a new location at the mall, one that was a little removed from the "in your face" presence we've had in years past, but the flip side was that the traffic was a little safer. The turnout for the walk was exceptional, and our team had close to 50 walkers. I owe all of you personal "thank yous," and they will be forthcoming. For now, I'm sending out a HUGE, universal "thanks" to all of our family and friends. It's your love and support that has kept our family afloat and filled with optimism. I wish I could hug each and every one of you. Alas, that would be costly and some of yo...

Great Strides 2014 is Tomorrow!!

The radio silence on my end is typical around this time of the year. Besides the other stuff going on in my life - work, podcasts, family - fundraising and stressing out about cystic fibrosis tends to consume everything. This year we started out slow in raising money for Great Strides, the annual Cystic Fibrosis Foundation fundraiser to find a cure, but things really kicked into gear these last two weeks. Our team set a goal for $5K, and we surpassed that by over $2,000. Among the ways that we had people contribute (beside the usual soliciting of money through emails and posts) were a fund rasier at Jacob's school, a bake sale at the school where Julie works, Sophie's own efforts, and a bucket I placed on a table at my office. All of these proved to be successful ways to raise money. It was very, very thrilling. One of the coolest things that happened was the contributions by Brave New World, the comic store in Santa Clarita where Jacob buys his comic books. Portlyn, the owner,...

Kid Duplicate asks you to Be a Hero!

Kid Duplicate was designed by Jacob. He asked me to draw it for him. I just helped him achieve his vision as an artist. Before I started, Jacob chose the pose I should use and gave me diagrams of Kid Duplicate's accessories. Jacob colored it. Please help Jacob and Kid Duplicate beat CF! Donate today! http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=1769201&pg=personal&fr_id=2067

Great Strides is around the corner.

May 3 is the Valencia Great Strides and there's still plenty of time to donate. Please check out our team page, watch Sophie's wonderful video, and consider making a contribution to ending cystic fibrosis. http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=1769201&pg=personal&fr_id=2067 Aloha!

Chapter Preview: The Beatles, "Here Comes the Sun"

It's been awhile since I posted a chapter of the book. Readership of the blog has had a bit of an uptick, so for those of you who are curious about the content of Basement Songs, here is the chapter I wrote about my son, Jacob. I hope you enjoy it.  Aloha. THE BEATLES "HERE COMES THE SUN"   The phone rang sometime in the middle of the day.   I was at my desk prepping materials for an upcoming record session at the animation company where I worked.   It was busywork to keep my mind occupied while I awaited this call from Julie.   She had taken our son, Jacob, then under a month old, to see the pediatrician. Jacob’s failure to thrive had been a cause for concern, and the doctor wanted to rule out the disease cystic fibrosis as the cause of his lack of growth.   It was early December 2001. When I answered, I could hear it in Julie’s voice that she was fighting back tears.   What we had feared was confirmed… Jacob did indeed have cystic fibrosis. Cystic f...

"Sir, Now You've Upset Me." Happy BDay, Vladika

Last weekend my friend, Brett, turned 43. I've known him since high school, where we began our association with each other as enemies. I can't tell you why we didn't like each other. I was the band director's kid, so maybe that had something to do with it. I recall an incident with an Eagles LP, which could've been the source of my anger. It was the hastily compiled "Greatest Hits, Vol. 2" which I received from the Columbia Record Club. In other words, cheap vinyl that I got for a penny. Hardly a reason to get pissed at a guy. Then again, I was 14/15 at the time, so I wasn't very logical. The strange thing about the animosity between the two of us was that we had the same mutual friends: Alex, Tom, John, Phil, Sally, Kathy and Kerry. We all hung out together. At some point Brett and I buried the hatchet (probably over a couple of North Olmsted Coolers, a primitive version of a Shandy) and became good buddies. During my high school senior year emotiona...

Bates Motel and CF

It's taken me a long time, but I've finally started watching Bates Motel , A&E's sort of prequel series to Psycho . I say sort of because the series takes place in modern day and not the 1960s. The show is well written and has the look and feel of Twin Peaks . I believe that's what the producers were trying to achieve. Toward the end of the pilot a young girl named Emma introduces herself to a teenage Norma Bates. She's walking around with an oxygen tank and tells him that she has CF. That's it, just 'CF.' It's not until the second episode that Emma explains that CF means cystic fibrosis and how it is destroying her lungs. Needless to say I was immediately intrigued. Emma is one of the main characters on the show and I was curious to find out why the writers chose to include a character with cystic fibrosis in their show.A little research and I discovered that one of the show's writers, Bill Balas, actually has CF. According to Wikipedia (the...

100K and counting

I feel like this was a great Mother’s Day, but I’ll have to let Julie tell you that. Both of the kids sang in church this morning, and afterward Sophie made the family brunch. She’s becoming quite the cook.   She prepared biscuits (a favorite of hers to cook) and scrambled eggs. At her age I could barely make peanut butter and jelly for myself (occasionally with a slice of American cheese in the middle). I’m so impressed with the young lady she is becoming and the confidence she has in herself. Do I fret over her entering high school next year? Hell yes. It’s not her I’m concerned about, it’s the boys. I was a stupid teenage boy at one time. Hopefully the young male population has progressed in the thirty years since I was a freshman in high school. God, I hope so. We spent most of the day lounging around, watching TV. The temperature outside was 103 degrees! I’ve lived in L.A. nearly twenty years and I can’t recall a May when it was this hot. 103? That’s insanity. We went to an ea...