My husband, Markezuma, made this graphic for me to help express my pain levels when I am not able to articulate on my own behalf. It’s the face for pain at 10 out of 10 with “jazz hands” to emphasize that inadequacy of the pain scale depiction.
Some time last year (I literally do not remember when), I tested positive for Covid-19. My entire household shared in this illness. Everyone else got better. I tested negative for Covid-19 on multiple occasions. But my nausea did not abate. For months, I was just nauseated and tired. I sought answers. I endure went expensive medical tests that told me what was not wrong with me. I’ve been waiting for next round of testing for over a month.
When this test, which I’m still waiting for, was scheduled, my pain levels were consistently at an 8. For context, my “10” was set by having open-heart surgery when I was 7. The pain I experienced post-op after having my chest cracked open was the worst pain I have ever experienced. In all fairness, I died during surgery (they had to kill me to save me). Since then, childbirth, emergency gall bladder surgery, and post-op infection has all refined my definitions of pain. Not to mention the chronic pain of fibromyalgia.
Yes, I am in pain. All the time. Everywhere. That’s nothing new. Nor is it particularly remarkable. I know quite a few people who could say the same. I’ve been living like this for years and I am far from alone.
I’ve also died. Literally. I’ve nearly died twice since then. Excluding near-suicides. Because I cannot even remember all of those.
I know pain. I know what dying feels like. I also have a master’s degree in written communications. I have zero need to use hyperbole to put my experiences into words.
Until my experiences steal my words.
I am experiencing pain levels so severe and so constant I cannot even feel it most of the time. It’s just noise. My nerves are sending signals of pain so frequently that my brain cannot process them. When the pain peaks, my body shuts down.
Literally.
I feel a wooziness creeping over me. If I am at home, I stop whatever I am doing and go up to bed. I lay down. Often, I do not have the energy/time to even turn off my lights. My body goes to sleep, but my mind does not. If I have the energy, I focus my mind into a state of meditation. If I don’t, my mind just wanders.
When I am able to reach a state of meditation, I can focus myself on experiencing individual sensations of pain. Most of my pain is in my abdomen. Over the course of the day, my abdomen bloats to the equivalent of 6-9 months of pregnancy. Not only are my insides being squished, but my muscles and ligaments are being stretched, perhaps torn. My core wasn’t particularly strong before Covid-19, but it is getting noticeably weaker with each week that passes.
I have also felt several passages within my intestines that feel constricted or partially blocked or both. Sometimes my stomach feels like a clenched fist. Other times it feels more like a flat tire trying to roll.
I feel like I am dying. My doctors have no proof that I am. One has even assured me that I am not. But so far the things that she has recommended under the belief that I am experiencing IBS have not improved my results. I continue to deteriorate.
My family is not ready for me to die.
This isn’t about personal preference. Yes, they want me to live just for the sake of me living. But that’s not what I mean. My family does not have the support they would need to survive my death.
But what makes this worse is that the brain fog that wrought so much damage on my life when I was in crisis is back. I lack the cognitive functioning I need to make a “playbook” I’d like to leave behind on how to survive my passing. My husband’s parents have already had to step in to handle some of the consequences and interpret the pieces from my lost functioning.
I know this is part of my journey for receiving the secrets necessary to heal my whole self. I know I am in a cocoon, undergoing a transformation process. I am hopeful that I will succeed. I must.
If I fail, I will die.
I will slay my tummy demon and then the words will flow once more.
Stephanie Allen Crist 