I adored the sounds of the crickets at night in Kokomo, though I loathed the sounds of cicadas in Delmar and how they would find their way into my bedroom in the mornings. I hated the smell and feel of car exhaust when I grew up in Pittsburg which I am reminded of since I moved to San Antonio, it’s a childish remembrance that I wish to chuck back into the black hole of distant memory.
Last month I was flying into Oakland with Alaska Airlines to stay with my best friend and his family for his birthday, one of the airlines I have yet to fly with up until then. I was quite thrilled that they were offering complimentary coffee on the flight (I cringe at the amount I’ve been charged for 6oz of drip while flying) and I joyfully sipped it in between reading a book. I had hardly slept a wink, actually awakening that night repeatedly to stress dreams about missing my flight—in a state of cognitive dissonance from the start, I was rather unaware as to why my face and neck had begun to itch. I made the detrimental assumption that it pertained to the lack of sleep, and had another cup. Then another on my connecting flight.
It turns out, that the coffee they were offering was from a brand called Stumptown that cannot guarantee there is no mingling with gluten or other types of allergens from where they source their beans. Those with peanut allergies choose to avoid them, and Stumptown claims to be safe for Celiacs without a guarantee regarding the PPM it might contain. In the coming days, I reacted as though I’d consumed all my dominant trigger foods: soy, gluten, and peanuts. My head was throbbing, my coordination was off (I have ataxia, not celiacs), my skin broke out with cysts and sores, and my sleeping was out of control as peanuts induce narcolepsy in me.
What a joyful way to spend a weekend with a dear friend that I hadn’t seen since moving to Texas. It has taken time to recover, and during this time the memories of my upbringing drown me of all the opportunity lost from an illness I have yet to receive a formal diagnosis to this day. I may have received the diagnosis of fibromyalgia at 12, but later another rheumatologist told me they thought that was not so. My Mother and her father were diagnosed with Fibromyalgia, my grandfather hails from a full bloody German ancestry—17% of Germany has MCAS, and it is also believed that 20% of Americans have it as well. That is 1 in 5 individuals, and likely is the case in most countries but is underreported due to a lack of medical literature and knowledge. Much like Autism (which it is also associated with) there is a spectrum to this very common disease, that I had not heard about until I was about 18 years old. There is the implication that COVID could allow MCAS to emerge, and from my own experience with COVID, it was like a severe flareup where I had a full-body migraine; I’ve had plenty of migraines that moved to my stomach, but I had no idea that a migraine with aura was possible on the entire body.
As I am writing this now, I have had the misfortune of discovering that Glyceryl Stearate is often derived from soybean oil, as I recover from the spraying of a “natural” mosquito repellant that had this ingredient. Immediately I felt sick to my stomach, and gradually my left eye began to swell as if I had taken a blunt weapon to my temple. The way MCAS reactions exist in a separate spectrum from IgE allergies makes this a tad sinister, as these highly processed ingredients do not have to state what they are derived from as they lack the FDA-recognized composition that causes an IgE reaction.
Even while growing up with a parent who understood the pain I was experiencing, there was still an abject isolation due to the severity of its progression. The unknown aspect that had me consistently referred out for psychological help that I adamantly refused because I hadn’t a clue how that’d help with the physical pain I had always experienced. The repercussions of doctors and school authority figures implicating me as a troubled kid spitting falsities to skip school is not something I will be elaborating on here, as these layers of trauma are something I am still understanding a decade later.
I’m quite frustrated, as I cast doubts on the possibility of receiving adequate treatment within the US American system after becoming traumatized before the ripe old age of 18. I hardly had a voice as a minor, with a parent beside me often dominating the conversation that I struggled to speak up on for myself. SSRI’s that made me insane, the opioids that had me nodding out in high school, the stupid migraine medications that made them worse before better—if I didn’t live in a state with medicinal marijuana, I would have been done for. Psilocybin is a new world of possibility that I wish I had discovered sooner, as the pain from my head would get so bad growing up that bloodletting was the only tool in access to ease it. The days when I would get a reaction to cannabis became some of my most helpless.
While I am primarily in remission, each day is like walking on eggshells because I cannot control the environment, or the lack of sufficient FDA regulations, and especially how inaccessible the public is for me because it does not take ingestion to spiral into a systemic reaction. I still have tried to live as normal, which was my inevitable downfall while living and taking public transportation in the Bay Area. Presently while I am living down the street from various fast food restaurants, I cannot help thinking about my favorite manga artist, Ito Junji, and how he refers to the saturation levels [of oil] in Glyceride.
Much of his work is reminiscent of my experiences growing up and the transition into adulthood with this invisible illness that is cancer hiding in another universe until it overflows into this one to take our lives. The recent insight that it affects 1 in 5 of the population has come as no surprise in a society existing with countless epidemics that if you get down to the root of it, stem from dissatisfaction with one’s body that is often malfunctioning; more than dissatisfaction, there is a lack of control when there is a lack of understanding with the systems hidden beneath our largest organ.
Surviving violence from the trio that is sexual, psychological, & physical—as well as from the self-inflicting weapon that is substance abuse, with that social contagion to feel a part of something. There is nothing I fear more than myself, that is why I have moved all over the country to discover all the different ways it kills me slowly. How I love it, the thrill of surviving in a world not designed for me—a level of masochism required to move on after experiencing the highest thresholds of pain on repeat during the most formative years of my development.
What’s worse than this pain felt, is how none of it is real unless someone with more education is there to tell me that it is so.
I love hearing the scampering and calls of birds in the bamboo out back of my home in San Antonio, it reminds me of all the walks I took from my apartment complex in Delmar, Delaware, into Delmar, Maryland. I was in a perpetual flareup living there, the superstitious side of me says it’s from living beside a cemetery, but the reality was all the soy crops in the immediate area.
Thank you to my dear friend, Jasper Ezekiel, as well as my partner, Romeo Gutierrez, for reading this over to confirm clarity.