Earlier this year, due to my hosting site’s exorbitant prices, I made the decision to move my site to a more affordable host. In the process, my site was lost. I’ve been too sick, too concussed and perhaps too apathetic to fight through the process of attempting to restore all that was lost. My whole online professional landing page wiped away in a moment; a technological glitch akin to shifting sand.
It’s apt to be back here with just this blinking cursor and a fresh start I didn’t ask for or believe to be needed…feels like a (forced?) return to my first love: writing.
It’s almost the end of November. Almost the end of this calendar year; I have mixed feelings. On one hand, f*cking goodbye 2025, don’t let the door hit you on the way out. On the other hand…I have so little to show for this year, so little to account for my time and existence that a part of me wants to pull the emergency break, demand a halting of time, while I shine a flashlight on the past 300+ days to see if it’s possible to recover the life that seems lost.
In April, I got the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)–after over two years of battling and trying to figure out what was causing my debilitating executive dysfunction, brain fog, energy collapse, etc. it was helpful, affirming and validating to have doctors say “Yes, we believe you. There are hundreds of thousands like you. This is the name for what is going on and here’s how we’re going to proceed.” At the very least, my family finally believed me and was more sympathetic to my distress.
But after the relief of a diagnosis & some semblance of a plan…on May 5, 2025, while doing the very low-key practice of qi gong in our living room, I passed out, hit my head on the floor and suffered a concussion. 10 days out, with a few back-to-back days of (accidentally) over doing it…my whole world caved in. Severe light, heat and sound sensitivity had us hanging towels, sheets, & grocery bags over every light surface of our home so that I could exist.
It’s been over two years since we had to close the therapy practice due to all this going on but I still have a hard time writing about it, still have a difficult time telling you the intimate details of how I lost all functioning, how my once healthy and able-bodied self became…unable, unhealthy, inadequate to do not just the things life demands of us all but all the simple, basic tasks of living too.
Is it internalized ableism that makes me want to keep this hidden? Is it because the conversation inevitably leads to how in our home and lil friend/fam group we’re still practicing taking COVID precautions? Is it because culturally I already know we despise disabled and sick people? Is it because I’m weary of people’s reactions and the (unspoken) ask to take on your grief & discomfort when you become aware of my grief and discomfort? Likely some combination of all of the above, but regardless of the reason…it’s kept me quiet.
I’ve tired of that now.
And have survived a period of time where writing was impossible, where my ability to communicate was lost, where all that was of my internal world was gone. For a time, I was just a shell of a body trying to find my way back to a functioning brain…
And now… I am grateful to any story I get to tell…
Jordan says, “It’s been like living in a casino.”
For almost seven months now, it’s been dark in our home. I saw summer come and go from the blackness created of curtains and behind a dense eye mask.
This is my first attempt at returning…I’m tired now and will try again soon to tell more of this story.
EMILY LORIN 