KAFO-nation

Last week I got my KAFO, my new leg brace.

On the whole this is a positive development, because it provides me with support for my knee which my old brace did not offer. It prevents my leg from moving out to the side and my knee from hyper extending (i.e. bending the wrong way), which I apparently had a tendency to do when trying to stand up straight. However, this behavior worried my doctor and therapists; they were concerned it could lead to long-term knee injury (certainly something I would like to avoid). So the positives of the new brace outweigh the negatives. I'm provided with greater stability, which also boosts my confidence in my left leg and allows me to walk a little bit more without the cane, to do such things as carry a glass of water from the kitchen to the family room. The downsides of the brace are that it's a little more cumbersome than my old one, a little more difficult to put on in the morning, and a little more visible, especially in these summer months. Unfortunately, I wasn't able to get the dancing elephant-patterned plastic I wanted, but I did get my second choice (faux jeans). But its visibility does remind me to discuss  the semantics of my condition. Even the word "condition" gives me pause. I was looking at a health survey recently, and it mentioned something about any new health conditions. And I thought, "no, I don't have any new health conditions; I'm in recovery from a series of events." I guess I think of a condition as ongoing. Even my aneurysm didn't feel like a condition: it was an object. My stroke, or at least the effects of it, are an ongoing condition, known as hemiparesis. But I've had a hard time settling into certain terms and/or potential mindsets that go with them. I honestly don't even know that I’ve ever qualified as "paralyzed,"  "crippled," or as an "invalid" (though I did come up with the bumper sticker slogan, "Being an invalid doesn't make me invalid.”). I may have had a heart attack, but even my cardiologist’s office was hesitant to define my "cardiac event." that way (I greatly prefer the phrase “myocardial infarction” anyway. I'm fairly certain that I am “disabled”, since I am collecting disability insurance. I am also pretty sure I am "handicapped," since I qualified to receive a handicap parking placard. I’m too cynical for "handi-capable" or “differently-abled, but I definitely have an appreciation for the sentiment they convey. I spend a good amount of time trying to prove to myself and others that I am capable of more than my circumstances suggest.

In the rehab I can remember a couple of occasions when someone said something about his or her "bad" arm or leg, or about how a "normal” person might be able to do something they couldn’t, and I found myself feeling more like an advocate than I ever had before, chastising them and reminding that we were all still "normal" and that our bodies had done nothing "wrong". Thus, I always refer to my “weak” side, not to my "bad" side. Never mind that being “normal” is hardly anything to envy. It’s so Melvin, man.

Recently, I was perusing Café press.com and happened to search "aneurysm", at which point I found many, "I survived brain surgery and all I got was this lousy T-shirt” shirts. I didn't really feel like I needed to advertise any more than my scarred head , leg brace, and cane already do, so I ended up with a semicolon shirt. (Dear Ken,  The t-shirt would actually be – in the interest of being completely accurate – “I survived two brain surgeries, a cerebral hemorrhage, a heart attack, , a stroke, and a skull replacement surgery; and all I got was this lousy t-shirt.  Love, proof-reading Jamie)

There’s another semantic argument right there: "I survived." I don't deny that as an accomplishment, but I'm uncomfortable with many of the expressions which describe who I am – stroke "victim", stroke "survivor", stroke “sufferer”. I'm not really sure what term I most prefer. I just  really don't want to form a new identity that's beholden to this experience. Strokes are actually catalogued as “cerebrovascular accidents (CVA)”, which puts me in mind of being a guy who was standing on a street corner one day and got sideswiped by a bus, though that's probably close to the truth. I want to continue healing and regaining without dwelling on that random act of fate. I'm also lumped in a group under "brain injuries." A think I hesitate when processing that one, too, because it brings to mind physical trauma, as well as mental incapacitation; I'm fortunate in that the first really only happened to me in a controlled environment, and the second has been relatively mild. I've read reports and seen pictures of Representative  Gabrielle Giffords, whose experience has been similar in some ways to my own (she also now has a plastic skull). But I was lucky enough to not get shot in the head for the privilege. No, there is nothing funny about that, not even in the similarities between what's happened to me and what happened to Brett Michaels.

As usual, thanks for making it to the bottom of the page.