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Posted by on Aug 24, 2014 in Blog, GU-SU, GUSU, SCI CURE, SCI Research Fund Bill | 0 comments

Upside Down

 

Here it is, the last day of our vacation with family in Sedona AZ and I had one of those moments not traditionally associated with the joys of hiking, laughter, beautiful scenery and good food with good people. It started with me recognizing that for all the obfuscation, I live in Panem….the Capitol city of the Hunger Games universe. After malingering through a multitude of tourist boutiques and T shirt shops on the main drag where 90% of everything available for purchase was made in China, India or Bangladesh. You know…turquoise jewelry, cowboy hats and all manner of trinkety Americana chatchki….you can’t help but pause and think about who paves the roads on which we walk (metaphor). So, I was already getting kinda pensive.
We’ll, I’m looking away out at the mesas that surround Sedona and started to tear up while thinking of all the places I had been that day that my son can’t go. And even some of the paths that he could make it to or through if he had one of those amped up all terrain wheelchairs, he can’t go the way he was made to go, and the way he loved to go…running, leaping, climbing, because most of his body doesn’t answer him when he calls.
The feelings are like a flash flood of emotions about the pain of injury, the pronouncement of diagnosis both in the world at large from Ferguson to Gaza and SCI to ALS. I think of my friend Michael who died a couple of years ago from that devastating progressive disease and my friend Derek whose bright eyes still light up his Facebook posts while his body slowly moves away…and of course, daily, of my son’s journey with paralysis.
While I am excited that ALS is getting the attention it deserves, I find myself feeling ashamed that I wish it was SCI that was exploding across social media. But of course there’s a long list of people affected by diseases and injuries who probably feel as I do and I’m sure everyone is thinking ‘how can we get on that viral train?’
What I really want is a reorientation of our priorities. We lay down ungodly amounts of money to feed our appetite for war while we rely on buckets of ice coupled with $10 here and there to eradicate a horrific disease (wonderful expression that it is…and kudos to those who put that ice tray in the internets freezer). Someone please try and convince me that we wouldn’t see faster cures if we gave Research half of the military’s budget.
It makes me wonder how much effort is required to keep us blind to the price we pay for the perks of Panem and forget the folks who live in District_____? This world needs to be turned upside down, so that it can be put right side up. I wish my hands were big enough to shake this blue ball but that’s why I’m writing you. With enough hands we might get a few good shakes…so join us. Subscribe, share, donate, attend our upcoming Gala (following post), find our Facebook page, Twitter account, tell your friends and lets get shakin’.

M

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