Thursday, August 14th, 2008

Basement Songs: Coldplay, “Strawberry Swing”

by Scott Malchus

I am running for my son.

That is the mantra I repeated to myself in times of exhaustion when I was training for my first two marathons back in 2003 and 2004. The early morning runs, the aching joints, the self doubt, all of these things played a factor in wearing me down and making me want to quit. But then I would repeat those six words to myself and I would find some buried reservoir of energy and continue moving forward.

I am running for my son.

The reason behind my sudden urge to run a marathon was raising money to find a cure for cystic fibrosis, the deadly disease that Jacob was diagnosed with when he was barely a month old. Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. To combat the disease, Jacob must do daily breathing treatment with a nebulizer and a machine called “The Vest,” which vibrates his chest to break up any mucus build up in his lungs.

Additionally, he must take enzyme supplements to help him digest food. Jacob takes a total of 13 different medications daily to keep him a healthy little boy who loves to play with his older sister, Sophie.

After a two-year hiatus, a simple jog through a rain-soaked parking lot last Thanksgiving lit a spark in me to begin running again. Between 2003 and 2006, over $20,000 was raised for the Cystic Fibrosis Foundation through the marathon fundraisers I ran. The time felt right to make another go at it. New shoes were bought, a slow steady regime was adopted, and on November 16, I will participate in the Pasadena half marathon, just two days after Jacob’s 7th birthday.

This past summer, we visited family in Ohio and I stuck with my training as best as possible. The very first morning, as I cut a path through the memories of my childhood jogging through the neighborhoods where I grew up, an epiphany hit me. I vividly recall a Coldplay song chiming through my headphones and I had a clear vision of the future. Jacob and his loving sister, Sophie, were sitting together on a swing, reading, he with his head on her shoulder. They were older, in their teens, and the sun was setting behind them. In this vision, I stood, observing, feeling blessed for the wonderful life I have and the beautiful family I love. And it occurred to me, suddenly, that I am not just running for my son.

I am running for my family.

As this thought came over me, I had to stop running, gasping for air and trying to hold back tears. Any passerby would have thought I’d injured myself. CF affects everyone in the family. As parents, that daily routine of 13 different medications can get overwhelming. But we do it because we love our child, and would go to the ends of the Earth to ensure his good health. And then there is Sophie, our precious daughter, who sometimes seems to carry the weight of the world on her shoulders. She loves her brother so much, it brings tears to your eyes when you observe the way they interact. I dread the day the two of them begin asking questions about the statistics, like median life expectancy and the fact that only half the people with cystic fibrosis live to be in their mid-30s.

I am running for my family.

This new mantra has given me renewed strength on my weekly runs and when I am in need of an extra push, the lyrics from that Coldplay song echo in my head:

“The sky could be blue, I don’t mind / Without you it’s a waste of time.”

Without my family I’m a waste of time. That’s why I’m asking for your help.

That’s why I’m running for my family.

We need your support. Please consider making a donation to the Cystic Fibrosis Foundation by clicking on this link. I’m not asking for much, 10, 20, maybe 50 dollars, whatever you can afford. Every little bit helps; every little bit goes a long way in finding a cure for this dreaded disease. It truly is a matter of life and death for people with CF.

My family and I, we thank you with all of our hearts.

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This entry was posted on Thursday, August 14th, 2008 at 9:30 am and is filed under Basement Songs, Music. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

  • It's a sweet song. And a very sweet image.

    I have a serious question to raise. My Dad died of cancer last year. We have had the "war on cancer" since Nixon. Hundreds of billions in research. Still, the odds are not really that good, comparing apples to apples. (Prevention is still the best cure, and if it gets to a certain stage before detection, your chances are not good. The treatments are often worse than the disease. In most situations, I myself would never take chemo, as I find little evidence that it will help that much more than it hurts, overall.)

    Is there something wrong with our research paradigm, where all this effort is expended, and results seem so incremental and spotty?

    I have another, kind of snotty question. Undoubtedly there are researchers in diabetes who have family members affected, and their motives are basically oriented toward solving this for their loved ones. There are cancer researchers who are primarily motivated by wanting to fix this disease for the sake of those in their family who have suffered from or are at high risk of cancer. But it looks to me as if most research is focused on patentable substances, and not at the whole range of substances that might be effective, even though some of them might not be profitable for some corporation. For example, I know several people who have survived cancer after receiving a death sentence from orthodox oncologists, who recovered using non-patentable regimes, supplements, substances, lifestyle and diet changes. My Dad first had cancer at 45. He died at age 81. He did not take any conventional cancer treatments, except surgery about two years before he died. I believe without those unconventional treatments, he could not have survived all those years. I believe conventional treatments would actually have shortened his life. I cannot prove this, but that is my best guess.

    It seems as if medical research is concentrated in one area (vastly profitable schemes) and very little is being done to look at a larger universe of possible solutions. I don't know anything about CF research, but in cancer research there is very little thinking outside the box. No money in it. Also, there's something unseemly about the taxpayers and private donors funding basic research, used by persons/companies who develop a treatment, lock up the patent rights, and get all the rewards.

    If a maverick does come up with a cheap cure (for example, the physicians who proved that a bacterium caused most ulcers, and a cheap antibiotic would fix the problem permanently), that will be fought, ignored, and resisted. Although the science has now been accepted, at the clinical level it is not fully implemented. Docs are as likely to write an Rx for Nexium as order a test for h. pylori bacterium.

    I say this not to discourage anyone. But it is a little discouraging to me.

    Scott, I wish every blessing for your son, that he may survive and thrive. Thank you for sharing the song and story.
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