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.Follow the link...


http://basementsongsthebook.blogspot.com/2015/03/basement-songs-rewind-coldplay-fix-you.html

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 and most of the buyers were children. So we're talking a buck or two here and there for a week.

Those two bake sales raise close to $1000.

Every bit counts.

If after reading this you're still hesitant, then look at this kid's face. That smile. The joy. The innocence. The great future ahead of him. Help him.  Help Jacob and kids like him who suffer from cystic fibrosis. You can make a difference.  You DO make a difference. Every bit counts.

Thank you!

Now here's the link: page: http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=2602145&pg=personal&fr_id=5010

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 coughing too much or his stomach is really bothering him. He has to wake up aat 5:30 AM just to fit in his breathing treatments, take a shower (which helps open the lungs, as well as make his hair look good) and squeeze in a couple bowls of cereal. At night, when he's exhausted because his body is working overtime to keep him healthy and he made it through the school day, he does extensive homework and has a snack before it's time for his nightly breathers and then it's off to bed.

By now, this has become a routine for him, for all of us, and while there are the occasional moan and groans, for the most part he weathers it all really well. I question if I could have handled something like this when I was 13. Doubtful.

This kid, throughout it all, is the funniest, most interesting and loving young man I know. I wish I could say that he learned this all from me or Julie, but I believe that it's just Jacob's nature to be a really great kid. He is an example we all should follow when it comes to handling the curveballs that life throws at you, or in his case smacks you upside the head with the moment you're born. I only wish I could do more for him when it comes to raising money for CF. The best I can do is write.

And so I write because it's what I was born to do, and because I can use words to appeal to you. Please, consider helping us find a cure to this monster called cystic fibrosis. Help us prolong the lives of men and women and children.

One of my favorite scenes in a super hero movie is in Spider-Man 2 (the Tobey Maguire one). There's a brilliant sequence when Spidey has to stop a runaway train with every ounce of strength. He manages to save everyone on board, but collapses. The passengers lift him over their heads and carry Spidey back into a passenger car, where he can rest. When he comes to, even though these strangers have all see him unmasked, they tell Spidey that not worry. They have his back and they'll never reveal what he looks like.

This is our chance to help out my hero and show him that we have his back. We can all lift him up by donating to end cystic fibrosis so that he may someday rest without worry.

Jacob's Donation Page

Aloha

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 research on treatments for the disease and progress toward a cure. So I must turn to you, my friends.

I apologize. And I beg you, please consider donating. When we say every little bit helps, I'm not just feeding you a line. If 250 people donate just $20, Jacob reaches his goal of $5,000. That's nothing.

That's all I have for today. Thanks for your time.

Here's the link: http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=2247535&pg=personal&fr_id=3288

Aloha

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 wreak havoc. CF patients often develop lung infections that can be life-threatening. The mucus blocking the pancreas prevents natural enzymes from helping break down food and absorbing nutrients. To date, this has been Jacob's biggest obstacle. But we know families whose children who have to be admitted to the hospital at least once a year.

Every since Jacob was diagnosed with cystic fibrosis at ten weeks old we have participated in Great Strides. In those 13 years, our family has raised over $100,000. This is a figure that I'm very proud of, but until there is a cure for CF we will continue doing whatever we can to raise money and awareness for this horrible illness.

Since 2008, we've been making fundraising videos to help support our fundraising efforts. This year, Jake had a really fun idea that required a little more work on his part and help from his friend, Sam.  I think it turned out pretty cool, and I know that Jacob was very excited about it \.

Please watch the video. Even though he gets a little "animated," I think you'll see that Jake is one great kid. If you listen closely, you can hear his favorite song by One Republic playing in the background.

This year I'm directing people to Jacob's personal fundraising page. I hope you'll go check it out and consider helping us find a cure for cystic fibrosis. Here's the link:

Jacob's Great Strides Fundraising Page

As always, I am humbled by the generosity of my family, friends and the strangers who are kind enough to make a contribution.

Aloha

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-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, not just for sporting reasons. The spring also marks the time of year when the Cystic Fibrosis Foundation holds their annual Great Strides walk in our hometown of Santa Clarita, CA. For those of you who have read the Basement Songs over the years, you know why Great Strides is significant to the Malchus family (and the Popdose staff). My son, Jacob, has cystic fibrosis (CF).

CF is a life threatening illness that creates a thick, sticky mucus in the body. This mucus clogs the lungs, creating the potential for infections. It also blocks the pancreas, preventing it from releasing the enzymes he needs to absorb nutrients. There is no cure. Each day, Jacob undergoes three breathing treatments with a nebulizer and dons a chest vibrating device called “The Vest.” He also takes oral enzymes with each meal to ensure that he stays strong and healthy. It’s a hell of a lot for anyone to live with, let alone a spirited nine-year-old boy who just wants to be “normal.” Jacob handles most of his daily routines in stride, although his anger and frustration has risen steadily over the past year.

Each year our family organizes a team of walkers for our local Great Strides. We call ourselves “Team Jacob.” Among the efforts we’ve done in the past is edit short videos to introduce people to Jacob and this dreaded disease. It’s an effective tool, sometimes too effective. Jacob’s big sister, Sophie, can no longer listen to George Harrison’s “Here Comes the Sun” and Bruce Springsteen’s “Workin’ on a Dream,” songs we used in previous videos. Hearing those classic tracks remind her of the images we pieced together and hurt her heart too much. I know how she feels. A couple of years ago a family we know used Coldplay’s “Fix You,” as a part of their campaign and from now on that song will always be associated with CF and that family. Listening to this live version of the song is even more powerful, with the audience singing along with Chris Martin, as I imagine the combined efforts of all CF families and their friends singing as one.

It’s become our tradition to hold a gathering at our home after each Great Strides walk. This is the least we can do to thank our friends and family for joining us in the morning walk and helping support our cause. Over the years our team has grown. In addition to my brother and his family, Julie's brother, Seann, the Cruz family and our neighbors, the Wills, school friends like the Conards, the Boss family and the Stinsons have been there for us. There is also my high school buddy, Jay, and of course, my parents, who drive out from Tucson each year. 2011 was also special because Julie’s mom and dad were visiting from Ohio and were able to experience it with us. I dream of someday having all of the good people who have helped us over the years to come out and join us. As inviting as our small ranch style house is, I don’t think they’d all fit.

Our little party was festive, with music playing in the kitchen, kids running around and tackling each other between belly laughs, pizza and beverages for everyone, and a game of corn hole for all who wanted to play. Meanwhile, with free MLB games on television all weekend, a small group of men sat in the living room and watched the Indians take on the Seattle Mariners. As I’m accustomed to doing during these get togethers I wandered between the small groups and took in bits and pieces of conversations. I sometimes can’t believe how blessed we are to have so many people who care about the welfare of our family. I must admit, though, that I kept getting drawn into the living room, where my brother, my dad and my father-in-law were all enjoying the baseball game.

The Indians are in first place.

What a great feeling for a Cleveland fan. Still, I’d make a major league trade of all the joy I receive from watching my favorite baseball team win some games if I could fix my son’s illness. As much as I like hearing that the Indians are in first, I’d love to hear a different phrase, one that goes like this:

CF stands for cure found.

If you would like to help the Cystic Fibrosis Foundation, you can visit this link to make a donation.

Originally published on Popdose, April 17, 2011

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 returning to has never given me the thrill it did when I was 13.

A few years ago, I wrote a comprehensive overview of the band's history in my Popdose Guide to Journey, reviewing every album by the group. It's an exhaustive read, but I had a good time doing it. One reader commented on Frontiers recommending changing the sequencing of the songs and swapping out one of the lesser tunes for "Only the Young." That song and another soundtrack song, "Ask the Lonely" (featured in the John Travolta/Olivia Newton John movie, Two of a Kind) were recorded during the Frontiers sessions. They were cut at the last minute in favor of "Back Talk" and "Troubled Child" (according to Wikipedia).

I've considered this reader's comment many times over the years (and if you're the person who wrote it, please chime in and take credit), and can only recall a couple of changes he suggested, in particular moving "Frontiers" to the top of side 2 and placing the power ballad, "Faithfully" into the second to last slot on side 2 (where "Frontiers" had been placed).

Over Christmas I gave this a try, and then began toying with the album even more. In addition to "Only the Young," I wanted to find a way to include "Ask the Lonely," which is one of my top 10 Journey songs. This week I came up with a track order that not only included these songs, but gave the record new life, bringing attention to songs that were buried on the second side and omitting two inferior tracks.

Here's how my reimagined Frontiers album looks:

Side 1:

1. "Separate Ways (World's Apart)" - No need to mess with perfection here. This is a great song to kick off any record.

2. "Only the Young" - Originally, "Send Her My Love" filled the second slot. Moving it down one and placing "Only the Young" here gives the record the flow of a concert. Two fast songs in a row keeps the energy up before moving into the first ballad on the record. "Only the Young" is also less angry that "Separate Ways," and a nice break before getting into the bittersweet "Send Her My Love."

3. "Send Her My Love" - Although technically a ballad, I'd call this song a mid-tempo rocker, similar to "Who's Crying Now" from Escape. Although it has quiet moments and is driven by Jonathan Cain's piano playing, the song moves at a fast pace and Neal Schon has an soaring guitar solo at the end.

4. "Edge of the Blade" - My toughest decision was to cut "Chain Reaction" from the album completely. While it's a fun, hard rocking song that appealed to me as a 13-year-old, it really doesn't add anything musically to Frontiers that isn't already covered by other songs. Following "Send Her My Love" with a blistering rocker is still the way to go, though, and shifting "Edge of the BLade" (which originally kicked off side 2) is a great way to achieve that. Additionally, it pulls one of the songs that were relegated to side 2 (often never listened to by casual fans because of the front loaded first side) into the spotlight. In a way, it replicates what "Keep on Runnin'" does on Escape.

5. "After the Fall" - This sometimes forgotten hit is a good way to close out the first side. It brings you down nicely from the assault of "Edge of the Blade," and has an excellent fade out that you can imagine ending with a needle lifting off of vinyl or a cassette deck snapping off.

Side 2:

1. "Frontiers" - An odd, experimental song, I never understood why "Frontiers" was shoved to the end of side 2. It has a really interesting percussion pattern by Steve Smith, Journey's excellent drummer. The way the song opens with the sound of wind and ends with the band a capella makes it a fine way to begin the second side.

2. "Ask the Lonely" - Inserting this great rocker as the second song of side 2 brings you back to the trademarks of Journey. It features the band's great harmonies, an impassioned vocal performance by Perry, and one of Schon's most succinct and melodic guitar solos. It also replaces the inferior "Back Talk", which was never a good song. Aside from the great drum beat on "Back Talk," the song does nothing for the album.

3. "Troubled Child" - The original track number two is nudged into the three slot. This is an overlooked slow rocker that also uses an unusual time signature for a rock album. I wonder if this could have been a single if the band had continued touring into 1984.

4. "Faithfully" - One of Journey's most enduring songs. Placing it as the penultimate song would have given listeners reason to listen to most of Side 2. And with this new song order, which I believe is stronger, it could have made Frontiers an even bigger success than it already was.

5. "Rubcion" - The original album closer and still the best way to wind down Frontiers,


I've been listening to this new version of Frontiers for awhile now. After getting my mind to adjust to not hearing certain songs following others (especially the original side 1), I've grown to love the reimagined Frontiers and actually look forward to listening to is when I'm in the mood for some Journey. In my mind, this song order flows better and provides the listening experience of Escape, which is a near perfect melodic rock album. Besides reconfiguring a Trevor Rabin album back in the late 80s (using a cassette deck), I've never toyed with an artists work like this before. I don't know if it's a challenge I'll continue with other albums, but I think this experiment was a success.

Give it a listen and let me know what you think.

Aloha

The Backstory of "Legendary," Pt. 2

The early 2000's were hectic and full of potential. Within a five year span, I wrote and directed King's Highway, we bought a house, Jacob was born, I sold another script, I took a new job at Cartoon Network, and I ran two marathons. 

The life changing moment in our lives was the day Jacob was diagnosed with cystic fibrosis (CF). When you’re told that your newborn child has a life threatening illness, your outlook on the world becomes radically different. His well being becomes priority number one. This is one reason I began working at Cartoon Network. The company offered stability and health benefits, in addition to the opportunity for growth.

I felt limited in what I could do to help spread the word about CF, a relatively unknown disease, and how to raise money for the Cystic Fibrosis Foundation. Running a marathon became a way to get people's attention and raise money. Around this time, I discovered a new way the Internet was allowing people to communicate and express themselves, something called "web logging." It sounded like a cool way to keep family and friends up to date on my marathon training, as well as providing information on Jacob's health. And so, I began blogging.

My first blogwas strictly about my training. I kept it for three years. When my body finally told me to "cut this shit out" and quit running, I began a second blog, ''thunderbolt." It was on that website that I created "Basement Songs," the periodic column about the songs that were essential to my life. It was through “Basement Songs” that I met Jeff Giles, Jason Hare, and several other wonderful bloggers who were supportive of my writing and my family’s pursuit of finding a cure for CF. When Jeff approached me about becoming a charter member of the Popdose group staff, I didn't hesitate. I brought along "Basement Songs," and published my personal stories for over 100 weeks.

A couple years after "Basement songs" began running, I was in a conversation with a family friend. At the time she was a junior editor at Simon & Schuster in their Young Adult division. She, too, was a fan of "Basement Songs," so when I remarked that I'd always thought about writing a novel (which is true), she said, ''If you ever have anything, I'd be glad to read it.''

I took her words to heart. For two months I worked on adapting one of my more recent screenplays, the story of a teenage girl with a sibling who has CF, into a novel. I wrote about fifty pages before I hit a wall. If I'm being honest, I wasn't prepared to write about cystic fibrosis just yet, not the way this character me needed me to. However, I didn't want to give up. I really wanted to try my hand at prose. I had nothing to lose. In need of a story about teenagers, I went into my files and pulled out that old script of mine. I decided to adapt "Finding the Way" into a novel.

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 you might not like getting a big embrace from a sobbing father.

Tell you what, next year you're all invited to the Walk and we'll have a blow out in our backyard.

Not sure where we'll fit everyone...

Who cares!!

Seriously, though, thank you one and all. Your generosity instills hope in the lives of so many people you do not know. God bless you.

Aloha

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, donated a basket for the walk raffle, and she posted a wonderful note on her weekly email blast to all of her customers. It was amazing for me to read, but for Jake it was one of the coolest things ever. In the comics world, I feel like he has found kindred spirits and a way to escape being the boy with CF. The folks at Brave New World have embraced Jacob and his cause and made him feel like one of their family.

I can't believe that it's been 12 years that we've been doing Great Strides. I can barely recall the first one. I know I was emotional, as I will be tomorrow. No doubt I will have to escape to a bedroom at some point tomorrow night during our annual dinner with all of the walkers and weep over the outpouring of love our family has been show. I've been in a funk all week; the tears have been on the edge for a couple of days.

To all of you reading this, thank you for giving your love, support and money to find a cure. We are optimistic about what is in store for CF people in the next 10 years. Your money has helped in the development of new therapies that will someday put an end to this damn illness.

Thank you, thank you, thank you.

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 fibrosis (CF) is an inherited chronic disease that affects approximately 30,000 children and adults in the United States (70,000 worldwide).  Due to a defective gene and the protein it produces, a CF patient’s body produces thick, sticky mucus that clogs the lungs and obstructs the pancreas.  This mucus can lead to life-threatening lung infections that must be combated daily with a regimen of medicines inhaled via a nebulizer machine, as well as percussive vibrations on the chest and back, usually performed with a device called the Vest.  Because the pancreas is obstructed, the natural enzymes used to help the body break down and absorb food are ineffective.  A CF patient must take supplemental enzymes with each meal and snack.

The CF gene was discovered in the late ’80s, leading to advancements in treating the disease.  While medications have bettered and prolonged the lives of people who live with the disease, it is still a daily battle to stay both physically and emotionally healthy.

Julie and I were familiar with some of this CF information following the dramatic events of Jacob’s birth.  He was delivered at thirty-six weeks and immediately placed in the Neonatal Intensive Care Unit at the same Burbank hospital where Sophie was delivered and had her own stay in the NICU.  After he was born, it was determined that Jacob’s intestines were blocked by a meconium plug which was preventing him from having a bowel movement.  The NICU doctor wanted to operate and remove the obstruction, but when no operating room was available the morning of the scheduled procedure, our tiny infant son was loaded onto a helicopter and flown to UCLA Medical Center where a different doctor would do the operation.

We packed up our things, and even though Julie was still recovering from a C-section, prepared to relocate.  Sophie was placed in the care of her aunt and uncle while we drove across town to UCLA.  Maybe it was the altitude from the helicopter ride, or perhaps it was some higher power stepping it to stop an unneeded medical procedure, but Jacob finally passed the meconium and the operation was put on hold.  Two days later, we were discharged from the hospital.  This incident seemed just a bump in the road, and we were on our way home to become the typical American family.

The morning Jacob was released from UCLA, the surgeon spoke to us, the first and only time we met him.  It was a routine exchange of information, and although I tried to focus on everything he said, I really just wanted to go home.  Then he made a comment that pricked my ears: he said that he believed a cystic fibrosis test had been administered and that he’d forward the results to our pediatrician.  Those two words registered somewhere in the corner of my memory.  Wasn’t cystic fibrosis the disease my cousin Kenny’s son had?  Wasn’t that the disease that took his son’s life when he was just a boy?

I tabled those thoughts for the time being.  Jacob was coming home, that’s what mattered.  “Everything is fine,” we thought.  

Obviously, it wasn't.

On that December afternoon, when I hung up the phone with Julie, my initial thought was, “I should have been there.”  Julie shouldn’t have been alone to receive this news.  But deep down we didn’t believe it was CF.  It had to be a virus or something easily treatable.  The optimist in me was certain Jacob would be fine, because everything always seemed to work out for us.  

Damn it, I was so wrong.  I should have been there.

I told my boss the news, and as I spoke those words, “cystic fibrosis,” I felt removed from my body, as if watching myself in a movie.  This unreal feeling continued for the next hour as I left work and drove home.  I could only imagine what Julie had experienced. She described the room beginning to spin and the doctor’s words swirling around her head, try as she might to remain composed.  

I should have been there.

Information I’d picked up from the Internet ran through my head.  Clogged lungs?  Malnutrition?  One fact cut the deepest: Statistics had the average life expectancy of a CF patient living into his/her early 30’s.  Dear Christ, I was 32 years old.  Was it possible that my precious boy would not make it to his 32^nd birthday?  How could that be?

When I arrived home, I walked in the front door and found Julie.  I just wanted to hold her and the kids.  I felt like if we curled up in a ball, this dream would end and we would awaken the next day to a different test result.  You become a parent with an understanding that there will be challenges every single day, but the challenges will be worth it because of the love you get in return from your child.  It was difficult to wrap my head around this bigger challenge.  Yes, I would never waver from being there for my son, but what did the future hold?  Was I a weaker father for even questioning these things?  That’s how I felt.

The rest of the evening was spent making phone calls.  Our friends and family offered encouragement along with promises to be there whenever we needed them.  My mom said she would drive out from Tucson at the drop of a hat while Julie’s mother was ready to hop on a plane.  When I called my friend Matt, he was speechless. Normally a man full of an unabridged dictionary of words, he suddenly had none.  Of all the conversations I had that night, I won’t forget the call I got from my cousin Kenny, telephoning from his home in Alabama.  Even though Kenny’s beloved son had lost the battle with CF, Kenny was the most hopeful person I spoke to that night.  He told me of the advances made to prolong the lives of people with CF and better their quality of life.  This man, who had suffered so much, was trying to lift Julie and me up.

It took some time for me to realize how gracious it was for Kenny to make that call.  Julie and I soon learned that all CF families support each other, and the day Jacob was diagnosed we had instantly become members of a much larger family.  Sadly, it’s one we wish we weren’t a part of.

2001 crawled to an end. Whatever holiday cheer we mustered was dampened by the news about Jacob.  Thank God for Sophie and her cousins to remind us of the joy and love of the holiday season. We didn’t travel to Ohio that year and spent our first Christmas in the new house.  I tried to hold on to my optimism, to counter our fears with a determination to make sure Jacob would outlive everyone.  Throughout this period, I found myself humming George Harrison’s “Here Comes the Sun” from the Beatles album, Abbey Road.  Harrison was in the news as he’d succumbed to cancer in late November which is perhaps why I found myself with the song on my mind.  Or perhaps it was because my brother, Budd, had latched on to the song, sometimes saying to me, “Hey, bro, here comes the son,” when referring to Jacob.  At other times, I know he was expressing the hopefulness of the composition.

During that sad, tearful Christmas season, one moment remains frozen in my memory.  It was this night that “Here Comes the Sun” played on the stereo in our living room while Budd held Jacob up in the air, my son’s tiny frame swimming in a onesie.  Budd stared at him with such intensity, as if he might be able to will the illness out of Jacob’s body, before handing Jacob off and leaving the room to collect himself, away from the rest of us.  It was only one of a couple occasions that I’ve ever seen Budd tear up.

“Here Comes the Sun” quickly became one of Jacob’s anthems. The same optimism that Harrison sang about is the same optimism that our family has that a cure for CF is just over the horizon.  Since Jacob was diagnosed, our family of friends and relatives have been involved with many fundraisers, from our yearly participation in the national CF Foundation fundraiser, Great Strides, to running marathons, climbing stairs, selling hats and even holding a couple screenings of King’s Highway, the feature movie that I wrote and directed.  Our efforts may sound like a lot of work, but it never feels that way.  

When your child has an illness, especially one that seems so close to a cure, you willingly do anything you can to make sure that he will see many, many more sunrises in his lifetime.

(I love this remix of "Here Comes the Sun" almost as much as the original).

"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 emotional void, when I thought the world would end because my heart was broken, I took a memorable camping trip with my friends Tom, James and Brett. We drove out into the middle of nowhere, parked our car and hiked down the side of a forest hill to pitch a tent. It was a fun adventure until the rain began. We wound up crashing at Brett's house the next morning, laughing about the complete failure of the trip. From that point on, Brett and I hung out more frequently.

After high school and into college, the same group of us saw each other during winter and summer breaks. There were never any "plans" to do stuff. Someone would show up at another person's house and we'd just hang out. At this point, Matt was a part of the gang. Man, Matt and Brett together were a pair. One particular night, Brett was over to the house and I began expounding on the brilliance of "My Sharona." Brett laughed as I went on and on about the musicality of the song; I even jammed it on the drums for him.

Later in the night, while the two of us were in the Malchus family room, shooting the shit over a couple of beers, my father entered the room. At that moment, Brett set his beer on the wood arm rest of the couch, or maybe it was an end table, I'm unclear. Wood was involved.

My father flipped.

"Sir, now you've upset me," he snarled at Brett. It was the most irrationally response I'd ever heard my dad direct at one of my friends. He spoke to Brett as if the guy was one of those punks that get under his skin during each school year.  But he liked Brett (still does, as far as I know). The look on Brett's face was priceless. Utter shock. Once my dad left the room, we both shared a WTF look and went about our business.

After Julie and I got married and moved to California, I never thought I'd see Brett again. Through mutual friends I learned that he was married and living in Colorado. The, sometime in the early 2000s, Brett contacted me to say he was going to be in LA for a couple of days. We had dinner, got caught up on each others lives, and suddenly the friendship was renewed. He's been to LA a few more times, and he happened to be in Ohio a couple of summer's ago while we were also visiting Julie's family. In a period of five years, I believe I've seen him more that any of the old gang. Pretty funny considering we used to hate each other.

This past December I finally met his lovely wife, Leah. At the fundrasier held in the memory of Seann, Brett and Leah showed up, along with the Koziols. Although we all only got to spend about an hour together, it was one of the best parts of an emotional evening.

Throughout the years, Brett and his family have supported Great Strides and my marathon fundraisers, which makes them extra special in my book. This year I was shocked to learn that Brett is battling Leukemia. He's been in chemo throughout the spring and I can only imagine the emotional toll it is taking on Leah and their two beautiful children. If anyone I know can kick this disease's ass, it's Brett. He's always been one of the fiercest people I know, a quality I truly admire.

There's not much I can do for my old friend except send my prayers and support his way. Oh, and I can remind him how fucking awesome "My Sharona" is and why it should always be cranked up on the radio.

Happy Birthday, Brett.

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 only place I can find a bio), Balas received a double lung transplant when he was in his late teens or early 20s.He's originally from Cleveland (go figure) and moved to LA to pursue a career in film and television. Congratulations, Bill.

As a CF parent, I'm always aware about how accurate the portrayal of CF is done in films and television. If there's one thing I want, it's that CF gets wider known and that more people will help support the foundation. However, I also hope that writers including CF in the films and TV episodes don't just uses it as a disease of the week and that the depiction is accurate.

Now I know, when you're dealing with TV some liberties are taken in order to make things a little more dramatic. Still, I'm very excited to see the rest of this first season of Bates Motel to see where they take this character and how close the portrayal of someone having CF resembles the life I know. With a writer on staff able to tap into his own experiences for the character, I have faith that this will be realistic look at CF... as much as a show about a crazy mom and the effect she has on her off balance son can be realitic.

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 early dinner, which was nice, and returned home for a round of Rock Band. I don’t know what inspired Jacob to pull that game out of the cobwebs in the toy room, but it was a blast jamming with the kids. Someday, perhaps, I really will bring my drums down from the rafters and set them up in the garage. I do miss playing them.

The past couple weeks were hectic. Julie’s parents were visiting for one of them, which meant that Jules and I slept in the living room on an air mattress. Something about not sleeping in my own bed screws with my writing rhythm. However, my writing partner, Jeff, and I completed a new TV spec script, so some good did come from that week. As for last week, it was an odd one. It was a busy one at the office and I found myself lacking energy and motivation when I got home at night.

The week did bring some fantastic news, though.

This week the CF Foundation had their annual Volunteer Appreciation Night in Hollywood. Julie and I rarely go to any of the CF events because they tend to fall on a weeknight and the drive sucks getting to and fro Los Angeles. Once again, we didn't attend this year, but we wish we would have. Team Jacob was recognized for reaching the "Century Club," which means we've raised $100,000 through our fundraising efforts over the years.

Can you believe that?

This is quite an accomplishment for our small little team. That means we've raised around 10K a year since we began our fundraising work. And with 90 cents of every dollar going to research, our money is making a difference!

I checked out the sales of Basement Songs this evening and the book has sold around 80 copies. I wish is was more. But I'm just some nobody. The key is trying to get people to read it and buy it, people who don't already know who I am. The column was never the most popular one on Popdose, but it did have dedicated followers. Would it help to write more Basement Songs columns? I'm not sure if I have any in me. I wish I did.

So if you're reading this now and you haven't bought the book, why is that? What can I do to inspire you to pick up a copy? Yes, there's a certain part of me as a author that really wants to reach that mass audience, but the fundraising aspect is sincere. I'm not making a dime off of this book. 


Anyway, I'm starting to ramble. My mind is alive after the latest episode of Game of Thrones (only 3 episodes until the season is done!). I hope that all of you were able to celebrate Mother's Day.

Aloha