28 February 2013

Chronic Instability

Is it really true that the night is darkest just before the dawn? Or is that just a metaphor about emotional processes? It's definitely pretty dark out there, though there's a riot of birds chirping; clearly, they know light is going to return soon.

I've been awake for the past four hours, alternately tossing and turning, getting work done, panicking about how little sleep I've had, and fretting about the inconsistency of my own body's responses to medication.

Last week, I got a cold.  Sometimes, I get a cold, I keep biking and running and going to the gym all through it, and it goes away.  Other times, it takes hold of my chest and ties a rope around it and makes it difficult to get breath in, get breath out.

At which point, I get a prescription for predisone, a kind of steroid that doesn't give you big muscles or superhuman sports ability.  It's just supposed to make me breathe.  But the effects of the prednisone aren't consistent, either.  It usually makes me pretty high, but if it's working well, I get a lot done during the day and I don't get quite enough sleep and I recover and move on.

This time, though, it's knocking my sleeping schedule to hell.  I think maybe I got five hours once night this week.  Tonight (last night? do I admit to it being over, or do I still think I'm going to try again to court Morpheus?) I've had three.  I don't function well on less than six or seven even when I'm not sick, and trying to let my body rest and recover when I feel like I've had a few gallons of coffee is impossible.  I'm trying hard not to get cranky with my family and colleagues; getting weepy in the car is fine, but not getting sleepy.

The pharmaceutical model is that if a medication worked well in enough of a test population to get approved, then it's assumed that it will work that way, consistently, in all of the bodies for which it's subsequently prescribed.  That's what the marketing will tell you.  The reality is, medications work differently in different bodies, and sometimes they work differently in the same body at different times.

Inspire: to influence, motivate, animate.  Expire: to die.  Breathe in, breathe out, breathe in, breathe out.

I've been re-reading Simi Linton's Claiming Disability, and I don't want to disagree with any of the important points made by the volume, in particular the key point that people with disabilities must control the discourse.  But somehow the book does not speak to my own embodiment of dis-ease.

It might be because, while Linton is very careful to avoid identifying disability in general with any one physical or mental condition, she does discuss the visibility of disability as a crucial component in its construction, though she acknowledges, in a discussion of "passing" as non-disabled, that disability is not always visible.

My dis-ease is invisible.  I "pass" unless I make a distinct effort to inform the world that my body works differently.  Those around me would be aware that I'm having difficulty breathing only if I tell them: there's no visible marker.  For me, "claiming disability" requires making an assertion about something that no one else can see.  It's subject, then, to belief -- or to disbelief.  "My smoking won't hurt you." "It's all in your head."  "Just take the stairs."  It's not a matter of passing as disabled, it's a matter of having to assert a disabled status when everyone else can "see" a person without markers of physical difference and therefore a person who must not be disabled.  Plus, no one likes a whiner.

And here's the dawn.  The taxicabs and the buses and the trains over the Williamsburg Bridge will soon drown out the chatter of birdsong.  And  I'll give up on ontology for another day, and perhaps try again to sleep.