How do you prove you're not disabled?

I am constantly amazed that I can't just tell myself to "get on with it" and get something productive done. Sure, I'm on sick leave, but that's because of the work I do, not because having someone rearrange the bones in your hand and remove bone from your hip is actually disabling. That's the problem with having a disability for me; I spend most of my time trying to prove to myself that I have no lack of ability in anything and that disability doesn't mean "not able", no matter how the word derivation breaks. Any non-productive time risks being defined as "unable".

Of course, that means any limitations are a threat to that self image. Tuesday I went to a concert by the Oregon Army National Guard Band with my husband and his parents. I think we were one of a dozen people who weren't getting the AARP newsletter, though the place was 2/3 full. Which was a real shame, because they were a very talented and diverse set of instrumentalists and they gave a good concert to over a hundred people who couldn't join the National Guard after the Zombie Apocalypse took everyone out that could play anything above kazoo. Next time they really need to work on their publicity.

 The brochure about the band at the concert talked about all the benefits, the travel, the extra money, but nowhere did it explicitly state you were actually joining the armed services. I think they may have seen it as not a big selling point. However, the one handed pushups and the physique of this band made it clear that they had to be physically fit; even the pregnant lady was in good shape. Maybe a decade of war will do that to you. That was definitely not the case with the band in the 80's.

I think the Guard Band is a great idea and an awesome way to make money for school doing something you enjoy with other talented people. The regular National Guard might be mobilized to go to Afghanistan and shoot people, but no one mobilizes a band to a war zone. Piccolos don't even hold a pitch in extreme heat or cold, so what would be the point? That's why I joined the Idaho National Guard Army Band in college, despite having been recently diagnosed with a progressive genetic disease that affected joint stability and wound healing. Hang on, I wasn't drunk or anything, I really did think this was a good idea. We were in and out of wars back then too, only back then the danger came from the Soviet Union and Reagan's love of nuclear weapons. He tried to collect nuclear weapons like Paris Hilton collects shoes, and  I was sure we were going to end up with a draft to make buying all these bombs and planes make sense. Being on the tarmac playing the flute seemed the safest place to be.


I knew a couple of students in the band, and the worst place they'd ever had to go was Savannah in the summer. They weren't any more likely to run without being chased than I was. Both of them were gay, and one of them was trying harder to be pretty than I was.  Most of the members were middle aged and looked as much like Rambo as I look like Angelina Jolie. All I had to do was get through basic training and I would be golden. Ehlers-Danlos Syndrome wasn't on the list of disqualifying conditions, which I assumed meant that I'd be able to handle it; wasn't it "benign hypermobility syndrome" after all? They must have really needed a first flute badly, since a history of ulcers and flat feet are both disqualifying conditions, and I told them about those as well. They really didn't look too closely at the physical; all they cared about was if I made weight. I ate more nasty tasting concoctions and diet bars that summer than actual food to get to the right weight. I think I was born heavier.

I never did get to basic training. One of the last recruits had gotten a stress fracture during basic but was allowed to complete without doing any of the hard stuff, and I figured that I would easily manage a stress fracture and get through if he could. But before I could go, one of my doctors stepped in. He pointed out that a stress fracture in my spine was just as possible, but with more serious complications. A couple of months after that I injured my knee and it became entirely too obvious that if I couldn't walk to the store without damage, I probably couldn't do basic. The commanding officer withdrew my application before I could go. I have an honorable discharge from the military, and for many years refused to admit it was my decision to leave the service, blaming it on overly cautious doctors. I wanted so badly to prove I wasn't disabled.

I now know that's a little like calling Wayne Gretsky a bad athlete because he couldn't score touchdowns. (For non-hockey fans, check Wikipedia). I don't have to be good at everything, or heal as quickly as someone else, or even get as much done as I think I ought. I just have to keep trying to be me. EDS doesn't define me, I do. I don't have to suffer through basic training to prove it.