How has Lyme disease affected your life? What inspires you?
I just want to feel human again. I feel like a shell of the person I once was. It’s not just energy, or the lack thereof, but a loss of emotion. ~Journal entry 11/9/17
Lyme Disease Awareness Month
In honor of Lyme Disease Awareness Month, I will write a series of posts that share honest insights of my Lyme disease treatment. My hope is to offer enlightenment as to the true severity of this disease and its treatment. For the two months that I stumbled around the dark chasm of Samento and Banderol I felt alone, vulnerable and dissociated from the world. I hope by sharing these truths, others won’t feel so frightened of the scary things going on in their minds and their bodies. Remember, though you may feel alone in this, you’re not alone. Others have walked, or are still walking, a similar path. I hope you can find some peace in our shared experiences.
Entering the abyss
I didn’t fully realize on the morning of October 5, 2017, that I had taken my first steps into the dark chasm of Samento and Banderol. My journal entries from those two months serve as my memory. The reality of the sensory deprivation that surrounded me like a veil reveals itself in my entries from those lonely days. As I walked around like a stoned corpse, my mind was swallowed by illusion. For two months I floated, helplessly, in that sea of delusion.
On October 4, 2017, I took my first drops of Samento and Banderol. The day before my doctor had warned my husband to watch for brain herxing, such as cognitive issues and depression. However, it was hard for him to fully gauge my mind’s rapid slide into the chasm of these two seemingly innocuous herbal extracts:
~Irritability (noise), difficulty driving again, brain fog, chilled, shaky~
I ran to the grocery store today and nearly got into two car accidents along the all too familiar route. I felt completely out of it, like I was super stoned. The world around me felt like it was moving at hyper-speed while I was moving in slow motion. While I was pulling out of the grocery store I nearly collided with another car. I didn’t even see him there. I’m not sure I even looked before pulling out. It’s like I was the only person in the world and then suddenly I wasn’t. My mental dissociation is alarming. If I could feel scared about this development, I probably would be. I don’t think I should be driving.
~So tired yesterday, took 2 naps. Increased dose this a.m. to 3 drops, feel weird already. Left foot numbness, wobbly, disconnected from my body.~
It feels like my head isn’t attached to my body. I have very little control over my legs. They wobble around like they have a mind of their own, completely separate from the commands of my brain. Through it all, I feel surprisingly comfortable in my delirium.
~Increase to 4 drops. So far, feel a bit out of it. Hard to concentrate, dizzy, and of course tired. Feel nervous. Kind of difficult to walk. Feel jell-o-ie, out of breath. Pain in left rib/breast continues. Left foot weird still. Cut back to 3 drops tonight, 4 drops this a.m. really fucked me up.~
My husband was speaking to me as he cooked me breakfast this morning. I couldn’t concentrate on what he was saying. I’m certain he was speaking English, as that is the only language he speaks, but he could have been speaking Mandarin for all that I comprehended of his words. When it was my turn to talk I opened my mouth, but no words came out. I’m certain I had thoughts but I was unable to speak them. My mouth moved like a fish as it swims along, absorbing oxygen from the water, and my words were released and carried away with the carbon dioxide.
~Feel weird…woke up with wet clothes, night sweats. Hard to focus, to talk. Catching my breath while walking. Headache again. Chest pain.~
I have to take Ollie for a walk. After I attach his leash I have to remember to grab the string attached to my head so I can carry it along with us. I draw a smiley face on it for the sake of congeniality, as it floats and bounces about, above the rest of my body. I wish the dissociation would reach my body. At least then I would be less aware of the heat that pounds on my body like a sudden heart attack.
~Slept good. Feel lost this morning, like I’m stoned, forgetful. Tinnitus, achy, tired. Hot flashes, headache, pain behind left eye. Difficulty swallowing.~
I’ve just stood up from the comfort of my brown recliner. I search about the room, looking for clues as to why I decided to stand up. Did I hear something? Am I thirsty? Does Ollie need to go out again? Do I need to go pee…aaah, yes that’s it. I need to go to the bathroom. I wonder, if I hadn’t had the inclination to stand up, might I have wet myself? That would be embarrassing. I need to remember to get some more water before I sit back down. I am thirsty as well. Get water, you’re thirsty. Don’t forget water, you’re thirsty. Get water, you’re thirsty. Aaah, back in the comfort of my brown chair. Aw, shit. I forgot to get more water…
~My brain feels weird. I feel oddly numb yet super sensitive all at the same time. I feel like my mind is a rogue agent right now. And, through it all, I am almost oblivious to it. It’s all very strange. Will is gone hunting right now, left two days ago…and I don’t miss him! This is not because I don’t miss him, it’s because I don’t really realize he’s gone. It’s like I’m stuck in some bizarre alternative reality… and unaware I’m stuck in it. The saying “ignorance is bliss” has never held more reality for me than now.~
This journal entry has always been the most telling, and the most eerie, of my recollections. I remember feeling this sort of elation in my ignorance of what was going on around me. Mostly, I really was rather comfortable in my delirium. I’m not sure if I should have been scared by this or not. All I know is that after I finished with this disarming protocol I was able to speak again and remember words again. It didn’t all come back at once, but my brain was on its way out of dis-ease into a place of ease. After the dark chasm of Samento and Banderol, the fog that followed me everywhere gradually began to wane.
The shell of a human
“I feel like the shell of a human.” This phrase comes up in my journal over and over throughout my treatment. For the two months that I took Samento and Banderol I lived in a constant state of nothingness. I was an androgynous avatar of myself, swaying in blackness, waiting for someone to select me and breath awareness into my eyes.
In my book, the title of the chapter where I discuss my journey through the chasm of Samento and Banderol is Brain-Fucked. That is a crass but all too true description of how I felt at the time. My consciousness was altered in a way that I had never experienced before or since.
If you find yourself swimming in the Sea of Fog, reach out your hand and know that you’re not alone. You’ll find your way back to shore. And when you do, things will be so much clearer. The sun will shine brightly on your face again.
Follow this Lyme warrior’s blog; United By Lyme and purchase her memoir here.