posted on 6.1.20 / posted in After

Recognizing lost significant moments

Outside, the world is on fire. Inside is where we sleep. If I were a better person, a more complete person, I would be out there with a hose in my hand.

I’m not.

I’ve put myself back together so many times I’m not sure any of the original pieces are left. I hear how that must sound, from the outside. There’s no way to tell you the last thing I want is to slip out. The world could be down to its last ember, and I’ll fight to keep myself balanced on top of it.

I haven’t always been this way.

I have though.

As many things have changed as have stayed where I last left them.

I was in my basement apartment in Astoria. I’d moved my bed back into the front room after painting the walls a soft blue. Something to calm me at night. This, like so many things, was before diagnosis, treatment. I had nightlights and peaceful audio to combat the inevitable fear and hallucinations that would come as soon as I tried to sleep.

Hallucinating, at least for this narcoleptic, meant every available object became something else, something with an infinite potential for paralysis and panic. I remember describing it in detail to my parents growing up and being told over and over that it was “just a dream.”

They weren’t wrong. They just didn’t know for an untreated narco, dreams and reality coexist at all times on a single layer of perception.

Life was as much of a struggle then as it is now. Now that I sleep without visions, without fear or panic. Sometimes it seems like more of a struggle, despite this new stability and, can I call it sanity? I created so much of my life when I was out of my goddam mind.

But, baby with the bath water. don’t do it. it’s cold outside.

Everyone has it harder and as the world burns and real danger remains poised and ready to take real lives, what do my struggles matter? They don’t really. I want to get through them, so I can be of more help than cash to the ACLU and my name and email on petitions.

I was in my basement. Meredith was still alive. Jack and I were still friends. I was training for and running marathons. The nightly hours were there, the horrors, the lack of sleep, but I was managing. Pretty well, seemed like.

with cool blue rooms and an infinite loop of the calmest episodes of Northern Exposure – an old VCR but no TV, hooked up to an even older Sony amp. This setup so when I woke up to hundreds of spiders the size of baseball mitts, crawling across the ceiling, I could tell myself it wasn’t real, ground myself in the people whose love I could feel, familiar art I could put myself in and dim the things that were not there, into the background.

After I painted, the room was just a bed for a week or more. Then, an old entertainment center I’d found on the curb. Finally a place other than the floor for the VCR, the amp, the tinny speakers. I was hooking up the antenna, testing it on WFUV and got this. Only a few minutes in and no way of knowing it was almost half an hour long. I froze in place and stood there with the antenna in my hand and listened until the end, and cried, because somebody put the ups and downs in a huge orchestral movement and even a classical dope like me felt it in his bones.

All for only a few minutes. Before a mad scramble to find pen and paper as the DJ told me what and who it was. The pen was easy, but I couldn’t find anything to write on in my bare room, so I just kept repeating the one-word title over and over so I wouldn’t forget: Nevertheless. Nevertheless. Nevertheless.

Gidon Kremer, violin. Album: From My Home. Track: Nevertheless.