Each year around this time, our family comes together to
begin raising money for the Cystic Fibrosis Foundation’s Great Strides Walk.
This is the annual 5K walk that serves as our big fundraiser to help find a
cure for cystic fibrosis (CF). Our family has lived with disease for 11 years, ever
since that December afternoon when my son Jacob was diagnosed with CF. When I
say “family,” I don’t just mean my wife, Julie, our daughter, Sophie, and
Jacob. I mean my parents, siblings and their respective families, Julie
parents, siblings and their families, plus the hundreds of aunts and uncles,
cousins, 2nd cousins, best friends and distant acquaintances from
years past who have all given what they can to help us in our battle. These
people, all of them, are family in some way. How else can you describe these
people who have shown so much love and support for Jacob and our family?
With every new Great Strides campaign comes the task of
writing a new letter asking people for money. Some years it is a great burden,
as the weight of this illness can bear down on the psyche. Other years the
letters seems to flow easily from my fingers because I’m inspired or because I
am desperate, I’m never really sure. What I am sure of is that each and every
year we have done a Great Strides campaign we marvel at the generosity of those
people we call family.
It’s that time again in which I must reach out to all of
you, my close friends, my Facebook pals, my work colleagues and or course, my
blood relatives. I must reach out to you because, although there have been
great strides made in discovering new treatments that may halt to progress of
CF, these type of medicines do not effect all people with CF… not yet. But they
are close, so very, very close. Someday within Jacob’s near future, a medicine
could be available that will allow him to never have to do another breathing treatment
to break up the sticky- life threatening mucus that forms in his lungs, that
will allow his body to grow and be stronger, that will allow him to throw away
the vest and the medicines that he hates so much (but must do to stay
healthy) and that he’ll live a long and full life just like anyone else.
But it takes donations from people like you, and from the
people you may forward this letter on to.
Each year at this time I put my heart on display for all to
see. I have no pride as I plead for help to raise money for Great Strides. Any
parent in my situation would do the same. I hope that you’ll consider following
this link to the Malchus family CF Donation page and helping my son, Jacob, and
all people living with CF. Someday that medicine will become available. Someday
can’t come soon enough.
This year, Sophie has taken the initiative in creating her
own CF page, in writing letters to her friends, and by working on our family
fundraising video. I hope you will watch this video and feel the love that she
poured into putting it together. My daughter adores her younger brother, as the
pictures in this video show. And, like her parents, she will do anything to
ensure that her brother lives a long and healthy life.
In the next day or two, I will begin my fundraising campaign for this year's Great Strides Walk in Valencia. We tried to come up with a new song for the Malchus family video, but each one chosen was either inappropriate, or Jacob nixed because he didn't want to "ruin" the song by having it become associated with CF.
As Sophie will attest, these songs become reminders of what we're fighting for when we ask for donations. Because of past videos, Sophie can no longer listen to "Here Comes the Sun" or Springsteen's "Workin' On a Dream" because they make her heart hurt too much. For that same reason, we didn't use the perfectly suitable Bruno Mars song, "Count On Me." Jacob loves that track, thanks in part to itsuse in the animated film, A Turtle's Tale (a movie that his dad just happened to work on), and also because it's just a wonderful song.
So, we chose to tweak last year's video (with the One Republic song intact) because it turned out so wonderful. However, thanks to the hard work of Sophie the video was updated with some great pics from our once in a lifetime trip to Disney World and Give Kids the World.
Tomorrow I will post the video, along with my official fundraising letter. For now, enjoy the Bruno Mars song that got rejected, probably the only time that's ever happened to the immensely talented Mr. Mars. Here he is performing on Julie and Sophie's favorite talk show.
I've been a reader of the L.A. Times since we moved here in 1994. The ritual of waking up and reading thenewspaper over a bowl of cereal is something I've done since childhood. With baseball season upon us, I love the idea of reading the box scores and reviewing how my favorite teams did the night before. Additionally, the Times arts and entertainment section is top notch. Since this is an industry town, I guess that's what you'd expect. Anything you want to know about movies, music, theater and television waits for you at the end of the driveway every morning.
Well, not everything. Yesterday I discovered that the Times is no longer listing the daily TV grid in their arts section. Thus, if I want to know what's on TV that day I'll need to go online or scroll through my Directv guide after I turn on the television. I know, it's not that big of a deal. Most cities around the country stopped printing the TV grid years ago. Heck, some cities in the country stopped printing newspapers years ago. I guess I'm just a little saddened that the city that is the home of most television studios and production companies has had to stop this service. For me, I took just as much joy at seeing what movies or TV shows were on that day as I did in reading the league standings in the sports section.
Yesterday the Times also ran a single page of comic strips in color. This was disheartening because a) they used to run two pages, and b) I find something special about the black & white strips and the artistry that goes into creating them. Another sign that the L.A. Times is going to continue cutting costs to compete with the Internet.
It's been a long time coming and I suppose I should appreciate how much of a newspaper I still get to read. Whenever we return to Cleveland for a visit, I'm shocked at how thin the Cleveland Plain Dealer has become. Someday soon there won't be a daily newspaper, just blips on the screen that register in our eyeballs.
What will Joe Jackson have to sing about when that happens?
Just a quick note that the first check from Lulu came last night, as did the first payment from Amazon. Thanks to all of you who've bought the book so far, we've raised over $200 for the Cystic Fibrosis Foundation!
Spring training is upon us, signifying the beginning of the Major League baseball season. Even though official games don't begin until April, I can't help but get excited about my favorite sport now that the players are reporting to camp (especially after the significant moves my team made during the winter). Four years ago I wrote the following as a Basement Songs post for Popdose. It came close to be included in the book and was one of the last cuts before the final edit. I hope you enjoy it.
JOHN FOGERTY
"CENTERFIELD"
The other night I let Sophie stay up past her bedtime to listen to
the last inning of the game between the Red Sox and Indians. One of the
things I love about the Internet is the ability to listen to every
Indians game with the Cleveland radio play-by-play announcers making the
calls — it’s really kept me in touch with my hometown. Ironically,
baseball was not a huge part of childhood in northeast Ohio; during the
’80s, there was little to root for when the Indians took the field. Oh,
each year there was a glimmer of hope for the home team that lasted
until the end of April, by which time the Tribe was usually in the
basement of their division. In addition to the woes of the Indians,
baseball was just never a presence in our house, which is strange,
because if you ask my dad about the ’48 and ’54 championship Indians
teams, he can rattle off players and some of their accomplishments. The
radio was always tuned to music in our house, though, and I found
televised games a bore. I took in the occasional game, but the old
Cleveland Municipal Stadium was a dungeon: cold, damp and cavernous. It
wasn’t a lot of fun to sit in the stands.
The only Indians game I recall vividly occurred in the mid ’80s. My cousin Dave and I rode the rapid
transit downtown to take in a doubleheader, and then hear Crosby, Stills and
Nash give a full-length concert afterward. It was a perfect day: Sun
shining; women roaming around in bikini tops; hippies singing out of
tune at the top of their lungs; and the Tribe won both games. It was
unbelievable.Dave and I returned home around 11 PM and man was my dad pissed. He didn’t realize it was a doubleheader and a rock concert. I think he was just worried.
I credit the movies for stirring my interest in baseball. I cried my
eyes out each time I saw Gary Cooper gave the Lou Gehrig farewell speech
in The Pride of the Yankees; I cheered each time I watched Robert Redford’s Roy Hobbs shatter the stadium lights in The Natural. However, it was the release of Ron Shelton’s Bull Durham
in 1988 that made me appreciate the nature of the game. I don’t believe
any other baseball film has ever captured the essence of life on the
field and off as well as Bull Durham — plus, Kevin Costner, Susan Sarandon, Tim Robbins and the late Trey Wilson are a dream cast. Almost a year later, David S. Ward’s comedy about the hapless Cleveland Indians, Major League,
hit theaters. The film, starring Tom Berenger, Rene Russo, Charlie
Sheen and the incomparable Bob Uecker, is a love letter to the city of
Cleveland, a town with a self-confidence problem ever since the Cuyahoga River
caught on fire in 1969. While both films are very funny, they are also
hopeful, which is what I love about the game. One day, your team can
lose by 10 runs and look like complete incompetents; the next night,
those same players can be in sync and look like champions.
With so many games in the baseball season, every day offers the
possibility that things may turn around. After any great win, you find
yourself saying, “Maybe they aren’t so bad.” True, delusional fans (like
me) repeat this line to themselves up until their team is
mathematically eliminated from the playoffs. When that happens, and the
season is over, you then find yourself muttering that other mantra,
“Wait until next year.”
During the ‘90s I became a hardcore Indians fan. It helped that they
had become a championship team, with great young players like Kenny
Lofton, Omar Visquel, Sandy Alomar, Jr., Jim Thome and that whack job
slugger, Manny Ramirez. I bled Indians red and
blue and proudly wore my ’70s era crooked ‘C’ cap around Los Angeles.
To paraphrase Kevin Costner’s other great baseball film, Field of Dreams,
I died a little when the Indians lost the 1995 World Series; died a lot
when they lost in 1997. I still replay the moment the baseball skipped
off of Indians pitcher Charles Nagy’s glove in the bottom of the 11th and the Florida Marlins’ Craig Counsell ran home to give the Marlins the championship.I fell to my knees in our apartment and sank to the floor. I hate Craig Counsell.
Each spring, when the birds begin chirping and trees spout new
leaves, when the winter coats are cast aside and the sun hangs longer in
the sky, you begin to hear the crack of the bat and the smack of leather gloves.
There are crowds cheering and players shouting, “Hey batta batta,” and
from the open windows of speeding cars and through the massive sound
systems of baseball cathedrals, you hear the rock and roll of John Fogerty’s“Centerfield.”
Baseball is back, summer is just around the corner, and every team has a
chance to be a champion. With 162 games to play, anything is possible.
There is hope.
Because of my obsession, Sophie and Jacob have also taken to the
game. I’m not ashamed to admit how thrilled I am that they’re Indians
fans. They’re free to root for any team they choose, yet they can’t help
but feed off of my enthusiasm. Sophie keeps track of wins and losses
with different color markers on a team schedule and sometimes sits on my
lap in the office while we listen to the Tribe play ball. I never had
the experience of hanging out with my dad, listening to the game and
discussing what’s happening on the field. We never bonded like that.
Moreover, I never had that comforting arm when defeat was so
overwhelming I cried.Two years ago, the Indians came one
game from making it back to the World Series. That was when I knew that
Sophie was in love with this game, and that was when she learned that
things don’t always work out the way you want them to. As the Indians
slowly walked to their dugout and the Boston Red Sox celebrated their
victory, Sophie broke down and cried. “It can’t be over. They have to
win.”
I took her in my arms and she sobbed into my shoulder. “It’s only a
game,” I said to her, hoping this line would somehow ease her pain. Then
I told her what I told myself:
This weekend my brother and I took down an old pine growing in my backyard. The tree had grown so big that it was pressing against the wall separating our yard with my neighbor's. The task was, at times, a little nerve racking, as we worked around power lines in both yards and we had to avoid getting crushed by thick falling tree limbs. After a long day of sawing (marked by a brief excursion to buy a treadmill), the tree was gone and we all ate a hearty Mexican dinner cooked by Julie and my sister-in-law.
Working with us were my two nephews, who seemed to get a kick out of cutting wood and using a hand saw. Watching them, coupled with the sound of cracking branches and the smell of dead pine, conjured memories of my youth. The old Malchus house had a huge backyard full of trees. I can remember many autumn days standing under a ladder while my father climbed up and clipped off branches for kindling. Those were long, boring afternoon and I shivered quite a bit, pounding my feet on the hard, cold ground, praying we could go inside soon.
I've been thinking about my father a lot this past week. I spoke to him recently and he said that he can't play the clarinet as well he used to. His fingers aren't as quick and his eyes can't always read the music. My heart sank when he told me this, as playing music has been his lifeblood for as long as I can recall. Life in the old Malchus home in North Olmsted would not have been the same without the regular sounds of my dad's clarinet playing, either to figure out a new arrangement he was working on, or showing one of his students how they should play their parts.
I'm sure my relationship with my father is no different than most men my age. When I was a boy, he was an imposing figure, but I loved being by his side, especially when we accompanied him to marching band camp and stood on the sidelines while he barked out instructions to his students. I was constantly afraid of disappointing him, a fear I carried with me into college. It wasn't until he had heart surgery in 1992 that I began to see him more as a man and less as this mythical figure called "Dad." As I've gotten older, although we don't always agree on everything, I have come to love him more and respect him for all that he did for the family. I may not agree with all of his choices, but I understand why/how he came to his decisions a little better.
Hearing him talk about losing some of his musical skills saddened me. I know how much he loves playing and how alive it makes him feel. The reality of my dad getting older really hit home during that conversation and reminded me once again that I need to call more often to talk to my folks. I've said it many times, but there would not be a Basement Songs book without my mom and dad.
I know that they read the book over Christmas, and I'm sure some of what I wrote may have surprised them (but come on, Mom & Dad, you had to know some of the things that were happening while you were away on vacations), but everything I put in the book was done so out of love.
Anyone reading this, make sure you contact you parents this week and tell them you love them. If your parents aren't a part of your life then call those people who mean the most to you. Life is unpredictable, as we all know, and we shouldn't let a day go by without telling the people who helped us grow into men and women know how important they are in our lives.
Whenever I hear this song by Springsteen, as with many Springsteen songs, I think of my dad.
I’m sure many people have seen the American Idol episode
that aired last week featuring Kayden Stevenson, a sixteen-year-old boy with cystic
fibrosis. The kid has guts and swagger and he was given a golden ticket and put through to the Hollywood
week (meaning, the cattle call in which everyone who was accepted in their
respective audition cities begins competing for a spot in the actual show).
This boy said something about his disease that has been sitting heavy on my mind ever since it was broadcast. When describing CF as a terminal illness, he said that he has a life expectancy of 35. As soon as he said this I felt like something was left out. That is, "the average life expectancy age is 35." I knew there might be some misunderstaniding about this fact. Indeed, some TV critics picked up on what Kayden said and wrote things like, "he has Cystic Fibrosis, which means he probably won't live past the age of 35" (Zap2it) and "Ridiculously cute kid with cystic fibrosis and a life expectancy of only 35" (TV Line).
I've never met any CF'ers who tell you that they're only going to live until they're 35. Every person I've ever met who has CF recognizes what the average life expectancy is and how they plan to do whatever they can to live well beyond that age.
The average life expectancy doesn't mean that a person with CF will only live until 35. In fact, with the medicines that are on the horizon, people with CF may live very long lives, well beyond the average expectancy. And all CF parents know this. A person of Kayden's age should know this. Watching the video that American Idol presented about this young man made me a little angry because I felt like they were trying to manipulate the audience into thinking that this boy was on the verge of dying, when that may not be the case.
Maybe I'm being overly sensitive because I'm a parent of a CF kid. Maybe I'm being cynical because I work in the entertainment industry and I know how video can be edited to elicit a particular feeling (and, let's be honest, it makes for better ratings when you have a kid fighting a chronic illness audition). But I want people who watched that show to understand that having CF doesn't mean you will die at 35. Not if I have anything to do with it.
Kayden's appearance on the show will surely inspire millions of
people, in particular those kids who live with CF. Hopefully it will also inspire people to find out more about CF and ways they can help find a cure for the disease.
Yesterday I began the process of submitting the book for review considerations. Much like querying agents to read the novel I completed a year ago, I can only hope that the introduction letter I've written provides enough to draw interest and request a book. It's a nerve wracking procedure, although after you've sent out a couple and received your first rejection response (which I did yesterday) it gets a little easier.
Monday was a very difficult, with Jacob's health causing me concern all day long. He had to come home from school, complaining of tightness in the chest. We believe it has to do with one of his new medicines, so we have stopped it until the weekend so that if it is the medicine it doesn't cause him to miss more school.
Ever since Jacob was born I've struggled with being the one at work while Julie makes herself readily available to get the kids from school and take them to the doctor. Especially when it comes to my son, I feel so inadequate at times, which is how I felt all day Monday. As I rode home in the pitch black night, the moon sat low in the sky and I could feel it tugging at my heart. I was so discouraged Monday night, ready to throw in the towel on all of my artistic aspirations.
This is the tortuous process that writers and other artists go through. We work so hard on our craft and hope that someone will discover it and like it. But there are days, days when you want to give up, days when it doesn't feel worth the emotional exhaustion. Those are the days I turn in to bed early and sleep off the shit. Usually I wake up the next morning with fresh eyes and a stronger heart. I hate having these feelings of doubt and letting my nerves get the best of me. Hate it.
Today I read an interview with Dave Grohl, the leader of Foo Fighters and the former drummer of Nirvana. Grohl has just released a documentary he directed about a recording studio in the San Fernando Valley that was the birthplace of some of the greatest albums ever recorded, including Damn the Torpedoes by Tom Petty and the Heartbreakers, Rumours by Fleetwood Mac and Nevermind by Nirvana. Grohl went around to many of the great artists who recorded there, including Petty. In the interview, Grohl remarked that he was apprehensive about approaching Petty. But he found the courage to call the man anyway.
"I've
finally realized that in those moments you have to let go of that
bullshit and say, 'I can't ruin this moment by being scared or by being
nervous, or by being insecure or thinking that I'm not going to be able
to do it. It'll be much more rewarding if I actually just do it.' I
would be terrified to ask Tom Petty to be in my movie, but God, I'd be
an idiot not to, and when I finally did he said, 'Well, you can't have a
movie about Sound City without me in it, now can you?'"
When I read something like that, it encourages me. Even renowned musicians struggle within themselves. I'm not so alone. I'm not so alone.
The other day I inquired whether I should transfer all of my old blog posts to this new one. A couple of my friends suggested that this book blog should be used as a means for readers to interact with me and discuss the book, while one of my old blogs be used for my soul searching. I thought that was a great idea. However, in many ways this blog continues the conversation I started in the book. This blog and the book are about my life and I don't think I can continue to make entries if I don't continue to open up like I do. If anything, I hope that people who are coming to the blog out of interest in the book will read these entries and like the sound of my voice.
And the truth of the matter is I just don't have the time or energy to keep multiple blogs while I keep writing for Popdose, working on scripts, hopefully starting another book and put in 40 + hours on the job.
So my friends, if you're new, I hope you'll indulge my long winded entries. And if you're a returning friend, I hope you'll pass the word about Basement Songs.
Here's one of my favorite Foo Fighters songs, and one of Jake's, too. If there is one person who teaches me courage on a daily basis, it's my son.
