Definition, limination, stagnation

I started this week as someone with fibromyalgia who had a date on Saturday. I'm ending the week as someone who may not have fibromyalgia after all but instead a rare seizure disorder, and someone who does not have a date on Saturday because her upstairs neighbor stood her up. How do we ever define ourselves when the definitions get pulled out from under us? I've always lived me life not being able to be pinned down -- in my education, race, family situation, etc. But sometimes you really want definitions. Definitions can be grounding and liberating at the same time.

Last night my roommate, who often mispronounces words, said inVALid when she meant INvalid. This simple mistake brought to light in a tangible way the way that invalids can be negated, invalidated, and cease to exist because they do not contribute society in the same ways as others. Invalids are invalidated in their quest to be a fully functioning member of the world. They are invalidated by their lack of economic gain, by their inability to function as an independent adult, and by the way they have to come at things in a different manner from those around them.

I'm writing this blog not because I'm seeking a pity party, but because if I don't write right here and right now I feel like I might just cease to exist. No, I have no desire to kill myself and that's not what I mean, but I fear sometimes that my mouth will just close up, and the only way to keep it open is to keep my hands pouring out my thoughts and making poetry on the page. Or at least good prose.

"O" came to the door today forgetting that we had a "date" tomorrow and rescheduling it for some unspecified time in the future. He refused to come in, said he couldn't make the date because he was picking up a piece of furniture while forgetting we had talked about said furniture enthusiastically a few days before, and I'm left knowing that he doesn't desire more than friendship, just like every other man who looks at me with those "you're wonderful" eyes. I am so good at reading others that I can't understand how I so frequently misread them when it comes to matters of my own heart. I feel that I can never say with certainty that someone is interested even when time and time again I am certain that they are.

This might not have come as such a low blow if I wasn't already feeling a sense of "bodylessness" and "personlessness" on account of my neurologist telling me that his diagnosis of fibromyalgia three years ago may have in fact been wrong. While his new guess of a rare form of seizure disorder seems like a much more appropriate explanation for my motor/sensory issues, I've lived the past three years of my life thinking I had one thing and I'm now being told that I may never have had it and may have something else instead. While a seizure disorder diagnosis actually comes as a breath of fresh air, I don't know what to do with all my writing that has been centered around my identity as someone with fibromyalgia. My personal and academic life are defined by my liminal existence in the black and white binary -- being too black to be white and too white to be black. As I've read up on fibromyalgia and conversed with others who have the disorder, I'm finding that the liminal space exists in my medical life as well. I'm too close to a diagnosis of fibromyalgia to be considered healthy, and I'm too far from a diagnosis of fibromyalgia to be considered one who has the disorder. Instead I am left in a purgatory of sorts where I am not sick by name and not well, not black but not white, and not unloved but not loved romantically.

If this post sounds self-deprecating I can attribute it to the fact that I now have to take my anti-convulsant whenever I feel a flareup coming on, which often carries a specific side effect unofficially called "Keppra-rage." I can also attribute it to the fact that I got a face wax for tomorrow, I didn't go to the Tulip Festival to be well for tomorrow, and I've been cleaning my house to make it presentable for O tomorrow, and now all I can do is change into PJ's and count this guy's attention as another misunderstanding... Or perhaps my gay-dar was right on after all.