18 months ago…
It’s late. All I know of time is my room is black except for the “sleep inducing” orange tint of my computer screen. The world has that quiet abandoned hum it gets deep in the night. It’s now the only time I can even attempt to write. I’m typing, frantically, trying to capture whichever thoughts can break through the thick haze and reverberate to the surface just a little bit clearer.
Brain issues aren’t new. M.E. attacked my brain with a passion when I got sick: passing out, walking into walls, memory loss, but this… this is different. This monster has burrowed down deep. It’s damage an earthquake, my brain the epicenter.
Thoughts, words, speech, they’ve become an experience, not an action, – an act in humility, not communication. They’ve become… fireflies.
Every summer as a kid, when the first fireflies appeared at dusk, my sister and I would leap through the scratchy wet grass over and over again to catch our twinkling prize. I’d beam as I opened my palm to see my hard fought prize, often to find nothing there. I race through the grass in my mind but when I open my mouth nothing is there: nothing at all, nothing close to correct, nothing anyone understands, nothing.
Beep! BEEP! Beep! BEEP!
I jump from the very loud, excessively obnoxious dueling alarms flashing across both my phone and laptop jolting me back to my room. (Alarms so important there must be two of them, but who refuse to give me the courtesy of syncing up no matter how hard I try).
I turn on the light. An army of orange pill bottles lines my bedside table waiting for me. I could fight a war with these tubular soldiers: their sheer number is impressive, not to mention their sizes now rival small Gatorade bottles. But it’s the intensity with which you are lectured to never be more than an hour late for a single dose (of drugs I rotate every 3 hours for the sake of my poor gut) that make you feel like your soldiers must be the “right pill bottles for the job“… right?
The orange soldiers are a new development.
The dueling alarms are a new development.
The wordless fireflies are a new development.
The constant trips to the E.R. and stays in the hospital are a new development.
I can’t finish the blog. I don’t post it.
The new developments have become a new reality.
* * * * *
“You and I live in the margins”. I laughed. I’m not sure I’ve gotten a more accurate text this year. This was Thelma and Louise driving off the cliff with my brain and immune system in the front seat holding hands (I’m guessing my brain would be wearing the head scarf?) So my friend Em is right, it has felt like I’ve been living in the margins, on the sidelines of the community with others battling bizarre issues we don’t hear about, that no one could diagnose, let alone say was connected to M.E., caused by M.E., something else, something new?
So I stopped blogging… because… because I had no choice. Because my body had hung on for 2 long misdiagnosed years. It had been a good sport and now it was pissed, the “attacks” cycled faster and harder than I could endure. Because I needed to let go of everything and simply hang on as I raced to find answers while flying off the cliff.
I stopped blogging because, between the powerful meds and the attacks on my brain, I was no longer a me I recognized. I stopped because I was scared, because I didn’t have the ability to blur the sharp edges of what I was going through, because I couldn’t censor the fear, it was too raw. Because I didn’t want people I loved to see or feel what I was going through. I stopped because I didn’t want to be judged by those standards. I stopped blogging because.
In the past year I have finally received a correct diagnosis that ticks off all the boxes and doesn’t lop off chunks of symptoms for a (now laughable) initial diagnosis. I have fought hard to get answers and treatments and find myself again. In all of that I found out maybe a lot of us only think we fit in the margins?
I realize the obvious question is: what were the attacks? What was the diagnosis? It’s nothing I can explain in a sentence so I’d rather devote a blog just to that topic and the other discoveries I made this past year.
So I’m going to try to blog again and hope you accept my apology for simply disappearing. I hope you’ll bear with me, looking at a computer screen for too long puts me at a higher risk of having an attack so I might be a little slow. But I’m here and this time around I’m determined to blog the truth like no one is watching!