Sunday, October 14, 2018

Remembering Death

Some good news.

About a year ago, in the thick of my battle with Lyme, I videotaped a science-themed event at a research institute in Boston. About 24 hours after this event, I had an "episode" where I thought I was either losing my mind or dying or both. You can read about this "episode" in greater detail in my blog entitled LYME BRAIN but to sum it up briefly, it felt like my brain was completely short-circuiting. I would look at my Facebook and see posts from friends but I would have no idea who they were. My brain couldn't connect how I knew them. I also had weird deja vu sensations where everything I did seemed "familiar", like I had already done it before. Or, in other words, it was like everything that happened in the present was being remembered as something that already happened in the past. So weird. It was seriously like a taste of dementia.


This "episode" triggered a downward spiral that lasted for a few weeks, up to Halloween, where I seriously thought that my body was gradually shutting down, little by little, and by Halloween weekend I was absolutely convinced that I was going to die. I have a vivid memory now where I return a book or DVD to the local library, I'm feeling so weird and awful, and then I drive home and I have this thought in my head that it's the last time I'll ever drive this familiar route home ever again. There was a 1990s-era song by Primitive Radio Gods playing on the car radio called "Standing Outside a Broken Phone Booth with Money in My Hand". The song had never done a whole lot for me in the past but, as it played in that particular moment, it sounded so powerful to me. The song sounded like something a man wrote and sang knowing he was about to die. So, to me, the song was essentially the sound of me dying. It was a strange, sobering, humbling, sad, depressing but somehow beautiful moment. It's so hard to put the experience into words but it felt like everything that I thought mattered in life or everything that I ever worried about, in the end, didn't matter...because this was my unavoidable fate anyway: death, right now, at age 35. I guess it's kind of like what that Linkin Park song says: "In the end, nothing really matters."


I obviously didn't end up dying, but the experience has haunted me ever since, in kind of a traumatic way but also a good way. I listen to the Primitive Radio Gods song here and there to remind me of how close I got to death. I know most people would probably avoid a song that reminds them of death but, for me, it reminds me of a rather frightening yet beautiful moment in life.




Anyway, this past week, I went into Boston and videotaped the exact same science research event I did as last year. I experienced much fear and anxiety leading up to the day because I thought it may trigger another downward spiral like it did last year. But I overcame that fear and, other than feeling pretty exhausted afterwards, I survived and I didn't have any episodes where I thought I was going to die or lose my mind or both. 


This is progress. 

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