By Guest Blogger Matthew Rodreick
Parent & Advocate
These last few months of lobbying for legislation to fund SCI research have been awfully tough. To use the old adage, ‘everyone likes a good sausage but nobody wants to see how it’s made’, sums it up. I told a friend of mine today that I’ve been having some trouble finding my legs, meaning that I’ve been struggling to get and stay motivated. It wasn’t until I started writing here that I recognize the stark irony of that phrase when talking about paralysis and its cure.
One of the things that I’ve been struggling with is the transition away from directly caring for my son, Gabe. It’s kind of an amped up empty nest syndrome. After leaving my career, traveling around the world and altogether retooling everything in our lives toward the effort of finding the most recovery for Gabe after his accident 5 plus years ago, that chapter is closing. I’m left looking at the ledger of choices we made, feeling frustrated that Gabe’s physical recovery is not where I’d hoped it would be. And also frustrated that in those five years there isn’t any change in the options for healing after a spinal cord injury.
But ledgers can be deceiving, and sometimes you need to cook the books to get by. While there is certainly no deliverable curative therapy out there for people living with paralysis (I can’t cook that well), there are other ways and means. I just came from a club in Minneapolis where Gabe’s band, Treading North, played to a medium sized crowd of friends, family and fans all. And let me tell you, if you live here in Minneapolis and haven’t seen them, you need to make the trip out into the nightlife to listen. It will be well worth your time.
If someone had told me a few years ago hat my son would find his way back to playing music, I’m not sure that I could’ve imagined it. I would probably have painted a picture of the guy in the wheelchair who was given the patronizing dispensation of that inspiring individual who was making the most of his limitations. But that’s not what I witnessed tonight. Tonight I listened to a tight soulful band whose songs have been well crafted, and performed with passion, and in my opinion better than anybody they’ve shared the stage with. The songs were all written, arranged and sung by Gabe, in a chair.
So, he’s further along in his ‘recovery’ than I ever expected and am thrilled that he’s doing what he has always wanted to do and doing it well. Here’s where I get the tendency for some in the SCI community to hold up individuals who push forward and do great, and for the able bodied, unexpected things. But I’m not going to pursue legislation to make sure that every club in the US has ramps leading up to the stage. That would be a bit shortsighted.
I’m always a bit uncomfortable with the ‘happy cripple’ message because it reminds me of all the status quo messages out there in the culture. There’s nothing wrong with our current version of capitalism because look at these unfortunately born folks who pulled themselves up by their boot straps: There’s nothing wrong with your theology of a God who’s in control of everything, you just need more faith to explain away all the evil in the world. The list could go on but what they all seem to have in common is a lack of criticism of the systems that define our choices.
We don’t have any curative therapies for SCI because the system is not built to deliver us one, and we haven’t been critical enough to turn that big machine in our direction. I’m going to continue to pursue legislation that helps to move the system towards a cure. So, I’m happy to extol the virtues of my son’s unexpected accomplishments but always with an eye toward helping him find his legs, fingers and diaphragm…I wanna hear his full voice. Then I won’t have to cook the books anymore.
Local Story about us and the legislation