November 21, 2014

When I was first diagnosed with a seizure disorder about thirty years ago, I learned three rules very quickly:

1. Never under any circumstances tell anyone you have epilepsy.

2. If you are somehow if forced by circumstances beyond your control to reveal that you have epilepsy, refer to it as a "seizure disorder." This sounds much less threatening and will possibly mislead people into thinking you do not have epilepsy.

3. Under no circumstances should you ever reveal that you have a seizure disorder.

You get the idea.

Furthermore, I picked up a cute little bit of usage during those days, one I first tried to reject, but finally embraced: Epilepsy is something I have, not something I am. In short, this is an objection to the use of the word "epileptic" on the grounds that it reduces a person to a disease. Most who lodge this objection prefer "person with epilepsy" as less punishingly reductive.

While I got that, really I did, for a time at least I toyed with perversely reversing the formulation on some half-baked grounds that involved seizures being a way of experiencing the world totally legitimate in their own terms, and so of course I told one and all that Epilepsy is not something I have, but something I am, the problem being that I told this to exactly no one, see Rule #1 above. Fortunately, it didn't take me too long to come to my senses and see that romanticizing my seizure disorder, see Rule #2 above, was as bad or worse than applying it as a simplistic label to me as a human being, so thenceforth, person with epilepsy it was. Again, the problem being that, strictly speaking, I was not a PWE, but rather a PWSD, except that I shared this with exactly no one, see Rule #3 above.

When I started My Parkinson's Diary it was with nary a thought of such considerations, in large part because the language simply doesn't afford me the status of being reduced to an ailment in the case of Parkinson's Disease. While I've seen at least one insistence on the Internet that it should be called (insert first name of PWPD here) disease, not Parkinson's, on the grounds that my loved one deserves better than to have someone else's name attached to the disease that afflicts him, you'll have to run that by relatives of those with Alzheimer's before it gets any traction with me. In other words, when the Reagans start calling what took old Dutch from them Ronnie's Disease, then I might consider calling what I have John's Disease. Also, because Parkinson's Disease is one of those tricky diagnosis-by-defaults, what I actually have is part of a constellation of conditions that all fall under the common rubric of Parkinsonism which, thank God, does not require any such silliness as Parkinsonism is something I have, not something I am.

So what do I call myself? Well, in a world in which what once were Indians became known as Native Americans before being referred to as indigenous peoples and who, as far as I am concerned, might just as well go by "people who lived on this land prior to settlement by those of the dominant culture," except that we're all probably better off keeping it simple and calling them what they called themselves which, as I understand it, was The People, in that world, I've decided I can live with being called That Parkinson's Guy.

Let me be honest: when I first started writing this blog it was clearly at least partially with the idea in mind that it would be my ticket to stardom. That's right, I thought, there I'll be with Robert Downey, Jr. dashing off my J. William Hanley on the red carpet! However, once I got more than a few entries down the road I realized that I had kind of painted myself into a Parkinsonian corner. In fact, pretty soon I started thinking I'm gonna be That Parkinson's Guy, and who the fuck wants to hear about that? I don't even want to write about that most days!

And yet. Here I am. My steel trap mind has snapped shut on this topic and I don't think it's gonna let go. Furthermore, I'm not sure it should. It would serve J. William Hanley's pathetic, self- aggrandizing ass right. In fact he should be so lucky!

Why? Three reasons:
1. He's not That Parkinson's Guy, umm, that would be Michael J. Fox, dumbfuck.

2. It allows him to keep teaching, only minus all those pesky student interactions.

3. He's actually following through on a long-term, substantial writing project. If being That Parkinson's Guy is the cost, so be it!