For the most part, I have been sharply productive and energetic about preparing for my next bout with HCV medications, combined with the new school year. Robust, definite, in charge.
But an argument tonight about adding yet more things to do to my week has somehow flung me into memories from the first time I took these medications, in 2000. I was teaching, a visiting professor, at UCLA; I was doing a course on music and AIDS, and part way through the semester became suddenly very orange... I thought at the time it was my new HIV medications, which were themselves about the same shade of orange (the original formulation of Kaletra – a funny idea now of course), but no, it was HCV. And I was given needles to inject the new medications... as I've mentioned lately, I remember sitting at one of the sunny outdoor tables of California Pizza Kitchen in Westwood, far from the other patrons, uninterested in the lunch in front me, looking at the bag of hypodermics, and starting to cry, thinking: so it's come to this, this is what's left of my life.
I feel surrounded by those memories tonight. Susan said, later, that I looked as though I might just blow away... it must have shocked the students a bit; I actually became so weak that it was difficult to get all the way from my apartment to the music building on the other side of campus. A bus took me part of the way, but I started to calculate the shortest level distances to go the two or three blocks to my office... an eerie time.
Worst of all, night after night for several weeks, in that quietly barren rented apartment in Westwood, I kept having the strange feeling that lights, or eyes, were flickering behind the blinds. Venetian blinds the length of the apartment, with buzzing, glaring fluorescent lights behind them... I was so tired and ill, and frankly delusional, but I was sure some nights that someone was watching through the windows when I wasn't looking... it was very hard to sleep.
Toward the end of my four months I was feeling stronger and much saner, and went outside once, probably twice, privately reassuring myself that there was no one outside, that other apartments couldn't see in at all. That I had been... well, frankly, losing it.
It is always difficult to clarify, even to my own conscious, alert mind, just what 'losing it' might really mean: but it is indeed possible to become uncertain about apparent reality, to start to experience the waking world as a confusing, shimmering nightmare.
My control, my schedules and spreadsheets and firm requests lately, seem designed to be a sheath over these memories, this fear: alone again, confused again, that possible sense of panic, confusion, chaos... injections and illness through all the winter months...
Yes, I know. I am considerably healthier than that now. But the windows are still here.