Saturday, May 30, 2009

Victory Lap

:: project earthala, work in progress ::

At 67 and still going strong, after bypass surgery, Wayne is a poster boy for how to tackle a debilitating muscular dystropy, one of about two hundred known varieties. In his case, cardiomyopathy is less likely the problem than the usual plaque buildup. Since he's not using that leg much, the femoral artery was repurposed with gusto.

Wayne pioneers wheelchair dancing as an art form, works on both modifications and green field development projects. Of course I've been hyping the latter, hooked on my own vision of high desert XRLs, art-engineering colonies for skilled individuals wishing to remain productive, help maintain a server farm, practice permaculture, sort through estate papers for web archiving, other such knowledge worker jobs (Carewheels?). He's especially energized by Gershwin, got that from his mom.

As Katie Couric wisely pointed out the other evening, some forms of cancer get less focus simply because their chief advocates don't manage to survive long enough to mount an effective lobby, a kind of vicious circle when you think about it.

Wayne's affliction isn't cancer, yet he's hoping his MVP status within the community might somehow motivate more research into this condition. It's not just about "finding a cure" (although that's certainly worthy), it's also about designing rewarding lifestyles for people accommodating to these new restrictions, looking to sustain a high quality of life.

Wayne knows a lot about staying independent. We should consider casting him as a role model, as a teacher and life coach, once he's finished with rehab.