Phillip's Words

“All you have to decide is what to do with the time that is given to you.”

I have that quote tattooed on my left arm. It was a quote made by Gandalf in The Lord of the Rings. I love those movies; I loved those books; I’m into that entire genre of wizardry and fantasy; and I liked the character who said that. But who the hell is desperate enough to suffer the pain of getting the words of some actor permanently inscribed on their own arm?

Read that quote again. Very applicable to my own life. I don’t stumble around with a golden ring on a chain around my neck. I’m not on a quest against evil - my brother isn’t that bad. But I do need to make a decision about what to do with the time that I do have, and not simply sit around and mourn for the time that I was never given.

Friedreich’s Ataxia is not terminal, but the associated heart condition is. I lucked out and got them both - a package deal! I was diagnosed in 1994, just after I turned 10. So here’s a math problem - back then, I read that cardiac arrest usually occurs “...two to three decades after diagnosis,” so what’s my life expectancy? 30 to 40 years of age, and I’m currently 20.

Back to the quote - so I let 10 years of my life roll by while I sat around on my ass, twiddling my fingers, waiting for some underpaid scientist to miraculously discover a cure to save my life. But that hasn’t happened...at least, not yet. We are tantalizingly close to finding a cure, but that underpaid scientist needs some cash. I’m tired of waiting for our restrictive government to make their selective financial contributions to research. It’s my disability, my burden, my life...and I will fight for it!

Last year, we did our first fundraising event. When the event was first conceived, some members were expecting to sell 100 tickets and make a total of $15,000. My mother and I were optimistically shooting for 150 tickets and $25,000 - the cost of a new beneficial drug study. By the end of the evening, we had sold over 219 tickets for a total profit of $38,034. Again, that was our first fundraiser, and that money has gone directly to funding Friedreich’s Ataxia.

Why bother? Why not sit holed up in my room at home like a little hermit, sucking up social security and playing video games all day? After graduating from high school, why not quit there? After having a heart attack one day on the track field during practice, why did I demand on being released from the hospital two days later so I could go back for the team photographs?

Call it “perseverence,” call it “integrity,” call it “utter stupidity,” call it whatever you want. I call it “living.” I want to live. That’s why I graduated from Chabot College with my Associate’s Degree last year. That’s why I transferred to San Jose State University and just finished my first semester. That’s why I’m going after a doctorate in psychology. I want to live well. Life may cut me short someday, but I want to live my life to the fullest until that day comes.

The best way for me to do that would be to end Friedreich’s Ataxia. Hope is a disability’s nemesis, and I hope a cure is found soon. By buying a ticket, or being a sponsor, or making a donation, you give me hope - every penny you give goes toward nurturing the nemesis of Friedreich’s Ataxia.

To the cure!