I think it’s the thing people in the thick of this most want to hear from someone on the other side: I’m doing well. Not perfect. But well. And a year or two ago, “well” felt like a world I was never going to be allowed back into.
For the “now” to mean anything, you need the “then.” I was close to losing my job. I was going through the motions at work like a ghost of a person, hoping nobody would look too closely. My relationships were strained to the point where I genuinely worried about my family, about whether the people I loved could keep living alongside this version of me. I was waking up in the night in a panic, my whole body buzzing, sensitive to light and sound and basically to being alive. That was my normal and it sucked.
Now I have my life back, at least to a certain degree. I work without faking being a person. When I’m with my family, I’m actually there, not just surviving in the same room. It’s quieter inside, I can even sleep sometimes ! What a feeling.
I’m not saying I’m 100%. I’m not. There are still days, still moments where my brain does a little “zap zap” but being not 100% and being okay are not opposites. You can be both. I am both. That turned out to be one of the most important things I learned: that “healed” doesn’t have to mean “flawless”.
And I’m really not saying I found a miracle cure. Flumazenil was a huge stepping stone for me, maybe the biggest, at least from my experience of n=1 and I’ll spend a lot of this blog talking about it. But there are other that I want to talk about more, like sleep entrainment. I think that most of us who get PAWS have a bit of an inherent “weakness” in our nervous system that make us susceptible to BIND.
So all in all, I’m not perfect, but good, there is hope friends !
